Annotated bibliography

profilefdsa123
NursingEthicsAcrosstheCurriculumandIntoPractice5thEditionbyButts978-1284170221.pdf

Nursing Ethics Across the Curriculum and Into Practice

F i f t h E d i t i o n

Nursing Ethics Across the Curriculum and Into Practice

F i f t h E d i t i o n

Welcome to

Nursing Ethics: Across the Curriculum and Into Practice, Fifth Edition drives comprehension through various strategies that meet the learning needs of students while also generating enthusiasm about the topic. This interactive approach addresses different learning styles, making this the ideal text to ensure mastery of key concepts. The pedagogical aids that appear in most chapters include the following.

The Pedagogy

Objectives These objectives provide instructors and students with a snapshot of the key information they will encounter in each chapter. They serve as a checklist to help guide and focus study.

© Gajus/iStock/Gett y Images

Introduction to Eth ics

Karen L. Rich

A seed will only become a flowe

r if it gets sun an d water.

—Louis Gottsc halk

▸ Introduction to Ethics

In the world tod ay, “we are in the

throes of a

giant ethical leap that is essentially

embracing

all of humankin d” (Donahue, 19

96, p. 484).

Scientific and te chnological adva

nces, eco-

nomic realities, pluralistic world

views, and

global communi cation make it

difficult for

nurses to ignore the important et

hical issues

in the world com munity, their eve

ryday lives,

and their work. A s controversial an

d sensitive

ethical issues con tinue to challenge

nurses and

other healthcare professionals, ma

ny profes-

sionals have begu n to develop an a

ppreciation

for traditional ph ilosophies of eth

ics and the

diverse viewpoin ts of others.

Ethical directives are not always

clearly

evident, and peop le sometimes disa

gree about

what is right an d wrong. These

factors lead

some people to believe ethics ca

n be based

merely on pers onal opinions.

However, if

nurses are to en ter into the glob

al dialogue

about ethics, they must do more th

an practice

ethics based sim ply on their per

sonal opin-

ions, their intuitio n, or the unexam

ined beliefs

proposed by othe r people. It is im

portant for

nurses to have a basic understan

ding of the

concepts, princip les, approaches, a

nd theories

used in studying ethics throughou

t history so

they can identify and analyze ethic

al issues and

dilemmas relevan t to nurses in th

e 21st cen-

tury. Mature, ethi cal sensitivities ar

e critical to

OBJECTIVES

After reading th is chapter, the r

eader should b e able to do the

following:

1. Define the t erms ethics and

morals and discu ss philosophica

l uses of these t erms.

2. Discuss syst ems of moral re

asoning as they have been use

d throughout h istory.

3. Evaluate a v ariety of ethica

l theories and a pproaches to u

se in personal a nd professiona

l

relationships.

3

CHAPTER 1

97812841712 04_CH01.indd

3

26/11/18 12: 37 pm

ii

ethical practice, and as Hope (2004) proposed, “we need to develop our hearts as well as our minds” (p. 6).

The Meaning of Ethics and MoralsWhen narrowly defined according to its origi-nal use, ethics is a branch of philosophy used to study ideal human behavior and ways of being. The approaches to ethics and the meanings of related concepts have varied over time among philosophers and ethicists. For example, Ar-istotle believed ideal behaviors are practices leading to the end goal of eudaimonia, which is synonymous with a high level of happiness or well-being; on the other hand, Immanuel Kant, an 18th-century philosopher and eth-icist, believed ideal behavior is acting in ac-cordance with one’s duty. For Kant, well-being meant having the freedom to exercise auton-omy (self-determination), not being used as a means to an end, being treated with dignity, and having the capability to think rationally.As a philosophical discipline of study, ethics is a systematic approach to understand-ing, analyzing, and distinguishing matters of right and wrong, good and bad, and admirable and dishonorable as they relate to the well-being of and the relationships among sentient beings. Today, even relationships between people and their environment have entered the realm of eth-ics. Ethical determinations are applied through the use of theories, approaches, and codes of conduct, such as codes developed for profes-sions and religions. Ethics is an active process rather than a static condition, so some ethicists use the expression doing ethics. When people are doing ethics, they need to support their beliefs and assertions with sound reasoning.Feelings and emotions are a normal part of everyday life and can play a legitimate role in doing ethics. However, people sometimes allow their emotions to overtake good reason-ing; when this happens, it does not provide a good foundation for ethics-related decisions. Evaluations generated through the practice of ethics require a balance of emotion and reason.

Throughout history, people, based on their culture, have engaged in actions they believe are justifiable only to have the light of reason later show otherwise. Following a charismatic but egocentric leader such as Adolf Hitler is an example of such a practice.

ETHICAL REFLEC TION Consider a person who believes abortion is wrong based on the position that human life is sacred. Can this same person logically justify that the death penalty is a moral action? Discuss.

As contrasted with ethics, morals are specific beliefs, behaviors, and ways of being derived from doing ethics. One’s morals are judged to be good or bad through systematic, ethical analysis. The reverse of morality is im-morality, which means a person’s behavior is in opposition to accepted societal, religious, cultural, or professional ethical standards and principles; examples of immorality in-clude dishonesty, fraud, murder, and sexually abusive acts. Amoral is a term used to refer to actions normally judged as immoral, but the actions are done with a lack of concern for good character, one’s duty, or the conse-quences. For example, murder is immoral, but if a person commits murder with absolutely no sense of remorse or maybe even with a sense of pleasure, the person is acting in an amoral way. Acts are considered to be nonmoral if moral standards essentially do not apply to the acts; for example, choosing between cereal or toast and jam for breakfast is a nonmoral decision.When people consider matters of ethics, they usually are considering matters about freedom in regard to personal choices, one’s obligations to other sentient beings, or judg-ments about human character. The term un-ethical is used to describe ethics in its negative form, for instance, when a person’s character or behavior is contrary to admirable traits

4 Chapter 1 Introduction to Ethics

9781284171204_CH01.indd 4

26/11/18 12:37 pm

or the code of conduct endorsed by one’s so-ciety, community, or profession. Because the word ethics is used when one may actu-ally be referring to a situation of morals, the process-related, or doing, conception of ethics is sometimes overlooked today. People often use the word ethics when referring to a collec-tion of actual beliefs and behaviors, thereby using the terms ethics and morals interchange-ably. In this text, some effort has been made to distinguish the words ethics and morals based on their literal meanings; however, because of common uses, the terms have generally been used interchangeably. The following features regarding the con-cepts of morals and ethics were adapted from Billington (2003):

■ Probably the most important feature about ethics and morals is that no one can avoid making ethical decisions because social connections with others necessitates that people must consider moral and ethical actions. ■ Other people are always involved with one’s ethical decisions. Private morality does not exist.

■ Ethical decisions matter because one per-son’s decisions often affect someone else’s life, self-esteem, or happiness. ■ It is difficult to reach definite conclusions or resolutions in ethical debates. ■ In the area of morals and ethics, people cannot exercise ethical judgments with-out being given a choice; in other words, a necessity for making a sound ethical judg-ment is being able to choose an option from among a number of choices. ■ People use moral reasoning to make moral judgments or to discover right actions. Types of Ethical InquiryEthics is categorized according to three types of inquiry or study: normative ethics, metaeth-ics, and descriptive ethics. The first approach, normative ethics, is an attempt to decide or prescribe values, behaviors, and ways of being

that are right or wrong, good or bad, admir-able or dishonorable. When using the method of normative ethics, inquiries are made about how humans should behave, what ought to be done in certain situations, what type of char-acter one should have, or the type of person one should be.

LEGAL PERSPEC TIVE Common law is based on customs and previously decided cases rather than on statutes.

Outcomes of normative ethics are the prescriptions derived from asking normative questions. These prescriptions include ac-cepted moral standards and codes. One such accepted moral standard identified by Beau-champ and Childress (2013) is the common morality. The common morality consists of normative beliefs and behaviors that members of a society generally agree about and are fa-miliar to most members of the society. These norms develop within the context of history and form a “social compact” (p. 3) about how people should behave. Because it forms what can be thought of as a universal morality with a wide scope, the common morality provides society with a framework of ethical stability. The common morality contains rules of ob-ligation, character traits, and common moral ideals. The beliefs that it is moral to tell the truth, exhibit loving-kindness, and be charita-ble are part of the common morality, whereas abortion is not a part of the common morality because of the many varying positions about its rightness or wrongness. Gert, Culver, and Clouser (2006) contended that many people mistakenly believe there is little agreement about moral matters, whereas in reality, con-troversial issues are actually the focus of only a small part of ethical decision making.Particular nonuniversal moralities ad-hered to by specific groups can be distinguished

Introduction to Ethics 5

9781284171204_CH01.indd 5

26/11/18 12:37 pm

chose to die by drinking poisonous hemlock rather than deny his values.Plato, Socrates’s student, is believed by some to have been the most outstanding phi-losopher to have ever lived. Plato’s reasoning is based on his belief that there are two realms of reality. The first is the realm of Forms, which transcends time and space. According to Plato, an eternal, perfect, and unchanging ideal copy (Form) of all phenomena exists in the realm of Forms, which is beyond everyday human ac-cess. Plato believed the realm of Forms contains the essence of concepts and objects and even the essence of objects’ properties. Essences ex-isting in the realm of Forms include, for exam-ple, a perfect Form of good, redness (the color red), or a horse. In the realm of Forms, the es-sence of good exists as ideal Truth, and redness (a particular property of some objects, such as an apple) exists as the color red in its most per-fect state. A horse in the realm of Forms is the perfect specimen of the animal that is a horse, and this perfect horse contains all the horse-ness factors that, for example, distinguish a horse from a cow. Plato considered the world of Forms to be the real world, though humans do not live in this world.The second realm is the world of Appear-ances, which is the everyday world of imper-fect, decaying, and changing phenomena; this is the world in which humans live. The under-lying purpose, or goal, of imperfect phenom-ena in the world of Appearances is to emulate their associated essences and perfect Forms. For example, a horse’s purpose in life is to strive toward becoming identical to the perfect specimen of a horse that exists in the world of Forms. Plato also proposed that humans have a tripartite soul. The three parts of the soul con-sist of the Faculty of Reason, associated with thought and Truth, which is located in one’s head; the Faculty of Spirit, which expresses love, beauty, and the desire for eternal life and is located in one’s chest; and the Faculty of Ap-petite, which is an expression of human desires and emotions and is located in one’s gut. Plato

believed the influences of these three parts of the soul exist in greater to lesser degrees in each person. Therefore, one person may be more disposed to intellectual pursuits as com-pared to another person who is more inter-ested in physical pleasures.Plato associated the tripartite soul with three classes of Greek society and one’s best-suited occupation. People were believed to have an individual aptitude particularly suited to them and their purpose in society: ■ Philosopher kings were associated with the Faculty of Reason and wisdom. ■ Societal guardians were associated with the Faculty of Spirit and protecting others. ■ Artisans and craftsmen were associated with the Faculty of Appetite and technical work.

FOCUS FOR DEBATE If Florence Nightingale were alive today and she took the position that nurses represent Plato’s guardian class and physicians represent the artisan class, would she be correct?

Florence Nightingale, the founder of mod-ern nursing, was a passionate student of an-cient Greek philosophy. Nightingale may have aligned the function of nurses with the Faculty of Spirit (LeVasseur, 1998). Because of her ed-ucation in classical Greek literature and culture and her views about nursing, LeVasseur pro-posed that Nightingale might have compared her purpose as a nurse with the role of a societal guardian. In contrast, early physicians, whose profession developed through apprenticeship guilds, which emphasized technical practices, might be compared to the artisan class.One of Plato’s most famous stories about reasoning is his allegory of the cave. In this story, a group of people lived their lives chained to the floor of a cave. Behind them burned a fire that cast shadows of people moving on the wall in front of the people who were chained.

Values and Moral Reasoning 9

9781284171204_CH01.indd 9

26/11/18 12:37 pm

Ethical Reflections Develop your critical thinking skills with these discussion-based activities that revolve around nursing ethics.

Legal Perspective Read and think critically about legal scenarios in the world of nursing.

Focus for Debate Weigh in on interesting scenarios relevant to the field of nursing and engage in ethics-related debates.

The Pedagogy iii

rules of etiquette, such as proper gr

eetings and

social rituals. Yi e mphasizes the im

portance of

one’s motivations toward achievin

g rightness

rather than emp hasizing consequ

ences. Sin-

cerity, teamwork, and balance are c

ritically im-

portant to ethical behavior. The pri

mary virtue

of Confucian eth ics is jen, which i

s translated

to English as bene volence or human

goodness.

Overall, Confuc ianism is a com

munitarian

ethical system in which social goa

ls, the good

of society, and th e importance of h

uman rela-

tionships are valu ed.

KEY POINTS

■ Ethics refers to the analysis of

matters of righ t and wrong, w

hereas morals r efer to actual b

eliefs and

behaviors. How ever, the terms

often are used interchangeab

ly.

■ Values refer to judgments abo

ut what one be lieves is good o

r makes someth ing desirable. V

alues

influence how a person’s chara

cter develops a nd people thin

k and subseque ntly behave.

■ Normative eth ics is an attemp

t to decide or p rescribe values

, behaviors, and ways of being

that

are right or wro ng, good or ba

d, admirable or dishonorable. W

hen doing norm ative ethics, pe

ople

ask questions s uch as “How ou

ght humans be have?” “What sh

ould I do?” and “What sort of p

erson

should I be?”

■ Ethical thinkin g, valuing, and

reasoning gene rally fall along a

continuum be tween ethical r

elativism

and ethical obj ectivism.

■ The study of va lues and ways o

f moral reasoni ng throughout

history can be useful for peop

le living

in the 21st cen tury. Specific va

lues and ways o f moral reasoni

ng tend to ove rlap and conve

rge

over time.

■ Virtue ethics e mphasizes the

excellence of o ne’s character.

■ Deontological ethics emphas

izes one’s duty rather than the

consequences of one’s action

s.

■ Utilitarian ethic s emphasizes th

e consequence s of one’s action

s in regard to a chieving the m

ost

good for the m ost people affe

cted by a rule o r action.

■ Eastern philoso phies and syste

ms of ethics oft en are insepara

ble.

References American Hospit

al Association. (2 003). The patient

care

partnership: Und erstanding expec

tations, rights, a nd

responsibilities. C hicago, IL: Autho

r.

American Nurse s Association. (2

015). Code of eth ics for

nurses with interp retive statements.

Silver Spring, MD :

Author.

Annas, J. (2011). Intelligent virtue

[Kindle version] . New

York, NY: Oxford University Press.

Aristotle. (2002). Nichomachean e

thics (C. Rowe, T rans.).

Oxford, UK: Oxfo rd University Pre

ss.

Beauchamp, T. L ., & Childress, J.

F. (2013). Princi ples of

biomedical ethics (7th ed.). New

York, NY: Oxfor d

University Press.

Billington, R. (20 03). Living philoso

phy: An introduct ion to

moral thought (3r d ed.). London, U

K: Routledge.

Bohman, J. (2005 ). Critical theory.

Retrieved from h ttp://

plato.stanford.ed u/archives/spr20

05/entries/critica l

-theory/

Brannigan, M. C. , & Boss, J. A. (20

01). Healthcare et hics in

a diverse society. Mountain View, C

A: Mayfield.

Brookfield, S. D . (2005). The po

wer of critical t heory:

Liberating adult l earning and teach

ing. San Francisc o,

CA: Jossey-Bass.

Buckle, S. (1993). N atural law. In P. Sin

ger (Ed.), A compa nion

to ethics (pp. 161– 174). Malden, MA

: Blackwell.

Charon, R., & Mon tello, M. (2002). In

troduction: The pr actice

of narrative ethics . In R. Charon &

M. Montello (Eds .),

Stories matter (pp. ix–xii). New York

, NY: Routledge.

Donahue, M. P. (1 996). Nursing the

finest art: An illus trated

history (2nd ed.). St. Louis, MO: M

osby.

Gert, B., Culver, C . M., & Clouser, K

. D. (2006). Bioet hics:

A systematic ap proach (2nd ed.

). New York, N Y:

Oxford Universit y Press.

Gilligan, C. (1982 ). In a different vo

ice: Psychological theory

and women’s dev elopment. Cambr

idge, MA: Harva rd

University Press.

24 Chap ter 1 Introducti

on to Ethics

97812841712 04_CH01.indd

24

26/11/18 12: 37 pm

RESEARCH NOTE: TUSKEGEE SYPH

ILIS STUDY

During the late 1920s in the U

nited States, syp hilis rates were

extremely high in some areas.

The private

Rosenwald Fou ndation teame

d with the Unit ed States Public

Health Service (USPHS) to beg

in efforts

to control the d isease using the

drug neosalvar san, an arsenic

compound. Ma con County, Ala

bama,

particularly the town of Tuskeg

ee, was targete d because of its

high rate of syp hilis, as identifie

d through

a survey. Howe ver, the Great D

epression derai led the plans, a

nd the private f oundation with

drew from

the work. The U SPHS repeated

the Rosenwald survey in Maco

n County and id entified a syphi

lis rate

of 22% among African America

n men in the co unty and a 62%

rate of congen ital syphilis case

s. The

natural history (progression) o

f syphilis had n ot been studied

yet in the Unite d States, and th

e surgeon

general sugges ted that 399 Af

rican American men with syph

ilis in Tuskegee should be obse

rved, rather

than treated, an d compared wi

th a group of 2 00 African Ame

rican men who were uninfecte

d. The men

were not told a bout the partic

ular details of th eir disease. The

y underwent p ainful, nonthera

peutic

spinal taps to p rovide data abo

ut the natural h istory of syphili

s and were told these procedu

res were

treatments for “ bad blood.” The

men were give n free meals, m

edical treatmen t for diseases ot

her than

their syphilis, an d free burials. E

ven after penic illin was discov

ered in the 194 0s, the men we

re not

offered treatme nt. In fact, the U

SPHS researche rs arranged to k

eep the uninfo rmed study par

ticipants

out of World W ar II because th

e men would b e tested for syp

hilis, treated wi th penicillin, an

d lost from

the study. The u nethical researc

h continued fo r 40 years, from

1932 to 1972. D uring the 40 ye

ars of

research, an ast onishing numb

er of articles ab out the study w

ere published i n medical journ

als, and

no attempt wa s made to hide

the surreptitiou s terms of the r

esearch. No on e intervened to

stop the

travesty. Finally , a medical repo

rter learned of t he study, and th

e ethical issues were exposed.

After reading th is chapter and r

esearching mo re information

on the internet about the Tusk

egee

research, espec ially the contrib

ution of Nurse Evers, answer th

e following que stions:

1. What were the main socia

l issues with eth ical implication

s involved in th is study?

2. Which bioe thical principle

s were violated by the Tuskege

e study? Explain .

3. How do va rious ethical ap

proaches relate to the Tuskege

e study? (See C hapter 1.)

4. Which pro cedures are in p

lace today to p revent this type

of unethical re search?

included the rul e now commonl

y known as

the principle of n onmaleficence, th

at is, to do

no harm. The rep ort contained gu

idelines re-

garding how to ap ply the principles

in research

through informe d consent, the as

sessment of

risks and benefits to research partic

ipants, and

the selection of re search participan

ts.

In 1979, as an ou tgrowth of the B

elmont

Report, Beaucham p and Childress pu

blished the

first edition of the ir book Principles

of Biomed-

ical Ethics, which featured four bioe

thical prin-

ciples: autonomy, nonmaleficence,

beneficence,

and justice. Curre ntly, the book is in

its seventh

edition published in 2013, and the

principle of

autonomy is descr ibed as respect for

autonomy.

Doing ethics b ased on the u

se of

principles—that i s, ethical princip

lism—does

not involve the use of a theory

or a formal

decision-making model; rather, eth

ical princi-

ples provide guid elines to make jus

tified moral

decisions and eva luate the morality

of actions.

Ideally, when us ing the approach

of princi-

plism, no one prin ciple should autom

atically be

assumed to be su perior to the othe

r principles

(Beauchamp & C hildress, 2013). E

ach princi-

ple is considered to be prima facie

binding.

Some people ha ve criticized the

use of

ethical principlism because they bel

ieve it is a

top-down approa ch that does not

include al-

lowances for the c ontext of individu

al cases and

stories. Critics c ontend that simp

ly applying

principles when m aking ethical dete

rminations

results in a linear way of doing eth

ics; that is,

the fine nuances present in relatio

nship-based

situations are not considered adeq

uately. Nev-

ertheless, the app roach of ethical

principlism

Ethical Principle s 29

97812841712 04_CH02.indd

29

26/11/18 12: 49 pm

© Gajus/iStock/Gett y Images

Case Studies Working throug

h the following c ase studies

is intended to b e done using thi

s book and

the American N urses Associatio

n’s (2015)

Code of Ethics for Nurses with

Interpretive

Statements. Res earching supple

mental in-

formation also may be helpful

to expand

learning opport unities and pro

vide more

complete answer s to questions.

▸ Chapter 1

1-1: Which Patient ’s Needs

Should Be Given Fi rst Priority?

Over several yea rs, Suzie has bee

n the nurse

for 50-year-old M rs. Gilmore, who

has been

frequently admit ted to the oncol

ogy unit in

the hospital wh ere Suzie works

. Suzie and

Mrs. Gilmore hav e developed a clo

se relation-

ship based on tr ust and respect.

During her

current admissio n, Mrs. Gilmore

’s condition

has been deterior ating, and she ha

s elected to

initiate a do not resuscitate (DNR

) order. To-

day, she is experi encing agonal br

eathing and

is nearing death. On a number o

f occasions,

Mrs. Gilmore sta ted that she is af

raid of dy-

ing. She asked Su zie to promise to

be with her

when she dies if s he is in the hospit

al and Suzie

is working at the t ime. Mrs. Gilmor

e’s daughter

is alone with her mother in the ho

spital room,

and the daughte r is frightened.

While Mrs.

Gilmore progres ses toward imm

inent death,

Suzie’s newly pos toperative oncolo

gy patient,

Mr. Statten, sudd enly and unexpec

tedly has a

grand mal seizur e. Suzie just met

this patient

when he returne d from surgery e

arlier in the

morning. Mr. St atten’s wife is hy

sterical. As

Mr. Statten’s prim ary nurse, Suzie g

oes into ac-

tion caring for hi m and notifies h

is physician

about the seizure . Jennifer, the nu

rsing assis-

tant working with Suzie today, com

es to Suzie

to tell her that M rs. Gilmore is ab

out to die.

The nursing assis tant also has a clo

se relation-

ship with Mrs. G ilmore and her da

ughter. The

wheels of Suzie’s mind begin to tu

rn trying to

figure out how to care for both of

her patients

who need special attention as well

as the other

three patients she is caring for toda

y. Suzie has

a high regard for Jennifer’s intellec

tual abilities

and aide skills, bu t Suzie knows the

re are limits

to what can be d elegated to unlice

nsed, assis-

tive personnel. It is a busy day for

all the staff

on the unit.

Questions 1. What should

Suzie do about c aring

for both her patie nts who need her

at the same time a s well as properly

caring for her oth er three patients?

What are the mo st ethical actions

?

What are her p atients’ and thei

r

significant others ’ most important

needs, especially regarding ethica

l

nurse–patient rel ationships?

Appendix A

319

97812841712 04_APPA.indd

319

26/11/18 12: 49 pm

Case Studies Read and analyze real-life situations dealing with nursing ethics. Then use your critical thinking skills and knowledge from the text to answer questions.

Key Points Review short, bulleted summaries of key points at the end of each chapter.

Research Note Additional readings and sources are provided for further learning.

iv The Pedagogy

Nursing Ethics Across the Curriculum and Into Practice

F i f t h E d i t i o n

Janie B. Butts, PhD, RN The University of Southern Mississippi

School of Nursing Hattiesburg, Mississippi

Karen L. Rich, PhD, RN The University of Southern Mississippi

School of Nursing Long Beach, Mississippi

World Headquarters Jones & Bartlett Learning 5 Wall Street Burlington, MA 01803 978-443-5000 [email protected] www.jblearning.com

Jones & Bartlett Learning books and products are available through most bookstores and online booksellers. To contact Jones & Bartlett Learning directly, call 800-832-0034, fax 978-443-8000, or visit our website, www.jblearning.com.

Copyright © 2020 by Jones & Bartlett Learning, LLC, an Ascend Learning Company

All rights reserved. No part of the material protected by this copyright may be reproduced or utilized in any form, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without written permission from the copyright owner.

The content, statements, views, and opinions herein are the sole expression of the respective authors and not that of Jones & Bartlett Learning, LLC. Reference herein to any specific commercial product, process, or service by trade name, trademark, manufacturer, or otherwise does not constitute or imply its endorsement or recommendation by Jones & Bartlett Learning, LLC and such reference shall not be used for advertising or product endorsement purposes. All trademarks displayed are the trademarks of the parties noted herein. Nursing Ethics: Across the Curriculum and Into Practice, Fifth Edition is an independent publication and has not been authorized, sponsored, or otherwise approved by the owners of the trademarks or service marks referenced in this product.

There may be images in this book that feature models; these models do not necessarily endorse, represent, or participate in the activities represented in the images. Any screenshots in this product are for educational and instructive purposes only. Any individuals and scenarios featured in the case studies throughout this product may be real or fictitious, but are used for instructional purposes only.

The authors, editor, and publisher have made every effort to provide accurate information. However, they are not responsible for errors, omissions, or for any outcomes related to the use of the contents of this book and take no responsibility for the use of the products and procedures described. Treatments and side effects described in this book may not be applicable to all people; likewise, some people may require a dose or experience a side effect that is not described herein. Drugs and medical devices are discussed that may have limited availability controlled by the Food and Drug Administration (FDA) for use only in a research study or clinical trial. Research, clinical practice, and government regulations often change the accepted standard in this field. When consideration is being given to use of any drug in the clinical setting, the health care provider or reader is responsible for determining FDA status of the drug, reading the package insert, and reviewing prescribing information for the most up-to-date recommendations on dose, precautions, and contraindications, and determining the appropriate usage for the product. This is especially important in the case of drugs that are new or seldom used.

17120-4

Production Credits VP, Product Management: Amanda Martin Product Manager: Tina Chen Product Specialist: Christina Freitas Director of Production: Jenny L. Corriveau Director, Relationship Management: Carolyn Rogers Pershouse Project Manager: Lori Mortimer Digital Project Specialist: Rachel Reyes Senior Marketing Manager: Jennifer Scherzay Production Services Manager: Colleen Lamy

Product Fulfillment Manager: Wendy Kilborn Composition: S4Carlisle Publishing Services Cover Design: Kristin E. Parker Cover Image, Title Page, Chapter Opener: © Gajus/iStock/Getty

Images Printing and Binding: LSC Communications Cover Printing: LSC Communications Media Development Editor: Troy Liston Rights & Media Specialist: John Rusk

Library of Congress Cataloging-in-Publication Data Names: Butts, Janie B., author. | Rich, Karen L., author. Title: Nursing ethics : across the curriculum and into practice / Janie B.  Butts and Karen L. Rich. Description: Fifth edition. | Burlington, MA : Jones & Bartlett Learning,  [2020] | Includes bibliographical references and index. Identifiers: LCCN 2018052313 | ISBN 9781284170221 Subjects: | MESH: Ethics, Nursing | Nurse-Patient Relations--ethics Classification: LCC RT85 | NLM WY 85 | DDC 174.2--dc23 LC record available at https://lccn.loc.gov/2018052313

6048

Printed in the United States of America 23 22 21 20 19 10 9 8 7 6 5 4 3 2 1

Substantial discounts on bulk quantities of Jones & Bartlett Learning publications are available to corporations, professional associations, and other qualified organizations. For details and specific discount information, contact the special sales department at Jones & Bartlett Learning via the above contact information or send an email to [email protected]

© Gajus/iStock/Getty Images

Contents Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xii

PART I Theories and Concepts 1

Chapter 1 Introduction to Ethics . . . . . . . . . 3

Introduction to Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

The Meaning of Ethics and Morals . . . . . . . . . . . 4 Types of Ethical Inquiry . . . . . . . . . . . . . . . . . . . . . . 5 Ethical Perspectives . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Ethical Relativism . . . . . . . . . . . . . . . . . . . . . 6 Ethical Objectivism . . . . . . . . . . . . . . . . . . . . 7

Values and Moral Reasoning . . . . . . . . . . . . . . . . . . . . . . 7

Ancient Greece . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 The Middle Ages . . . . . . . . . . . . . . . . . . . . . . . . . . .10 Modern Philosophy and the Age

of Enlightenment . . . . . . . . . . . . . . . . . . . . . . . .11 Postmodern Era . . . . . . . . . . . . . . . . . . . . . . . . . . . .12 Care-Based Versus Justice-Based

Reasoning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .12 Learning from History . . . . . . . . . . . . . . . . . . . . . .13

Ethical Theories and Approaches . . . . . . . . . . . . . . . . .13

Western Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13 Religion and Western Ethics . . . . . . . . . . . . 13 Virtue Ethics . . . . . . . . . . . . . . . . . . . . . . . . 14 Natural Law Theory . . . . . . . . . . . . . . . . . . 16 Deontology . . . . . . . . . . . . . . . . . . . . . . . . . . 16 Consequentialism . . . . . . . . . . . . . . . . . . . . 17 Prima Facie Rights . . . . . . . . . . . . . . . . . . . 19 Principlism . . . . . . . . . . . . . . . . . . . . . . . . . 19 Casuistry . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Narrative Ethics . . . . . . . . . . . . . . . . . . . . . . 20 Critical Theory . . . . . . . . . . . . . . . . . . . . . . 21 Feminist Ethics . . . . . . . . . . . . . . . . . . . . . . 21

Eastern Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .22 Indian Ethics . . . . . . . . . . . . . . . . . . . . . . . . 22 Chinese Ethics . . . . . . . . . . . . . . . . . . . . . . . 23

Chapter 2 Introduction to Bioethics and Ethical Decision Making . . 27

Introduction to Bioethics . . . . . . . . . . . . . . . . . . . . . . . .27

Ethical Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .28

Autonomy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .30

Informed Consent . . . . . . . . . . . . . . . . . . . . . . . . . .30 Intentional Nondisclosure . . . . . . . . . . . . . . . . . .32 Patient Self-Determination Act . . . . . . . . . . . . . .34 The Health Insurance Portability and

Accountability Act of 1996 (HIPAA) Privacy and Security Rules . . . . . . . . . . . . . . . .34

Nonmaleficence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .36

Futility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .36 Rule of Double Effect . . . . . . . . . . . . . . . . . . . . . . .37 Slippery Slope Arguments . . . . . . . . . . . . . . . . . .38

Beneficence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .38

Paternalism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .39 Second Victim Phenomenon . . . . . . . . . . . . . . .40

Justice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .40

Social Justice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .41 The Patient Protection and Affordable

Care Act . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .42

Professional–Patient Relationships . . . . . . . . . . . . . . .43

Unavoidable Trust . . . . . . . . . . . . . . . . . . . . . . . . . .43 Human Dignity . . . . . . . . . . . . . . . . . . . . . . . . . . . . .44 Patient Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . . .45

Moral Suffering . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .45

Ethical Dilemmas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .46

Introduction to Critical Thinking and Ethical Decision Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .47

vii

Critical Thinking . . . . . . . . . . . . . . . . . . . . . . . . . . . .48 Moral Imagination . . . . . . . . . . . . . . . . . . . . . . . . . .48 The High, Hard Ground and the

Swampy, Low Ground . . . . . . . . . . . . . . . . . . . .50 Reflective Practice . . . . . . . . . . . . . . . . . . . . . . . . . .51

The Four Topics Approach to Ethical Decision Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .53

The Healthcare Team . . . . . . . . . . . . . . . . . . . . . . .55

Chapter 3 Ethics in Professional Nursing Practice . . . . . . . . . . . . 59

Introduction to Nursing Ethics . . . . . . . . . . . . . . . . . . .60

Professional Codes of Ethics in Nursing . . . . . . . . . . .62

ANA Code of Ethics for Nurses . . . . . . . . . . . . . . . .63 ICN Code of Ethics for Nurses . . . . . . . . . . . . . . . . .64 Common Threads Between the ANA

and ICN Codes . . . . . . . . . . . . . . . . . . . . . . . . . . .64 Professional Boundaries in Nursing . . . . . . . . . .64

Ideal Nursing Ethical Competencies . . . . . . . . . . . . . .67

Moral Integrity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .67 Moral Distress . . . . . . . . . . . . . . . . . . . . . . . 68 Honesty . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69 Truthfulness and Truthtelling . . . . . . . . . . . 69 Benevolence . . . . . . . . . . . . . . . . . . . . . . . . . 70 Wisdom . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72 Moral Courage . . . . . . . . . . . . . . . . . . . . . . 73

Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . .75 Mindfulness . . . . . . . . . . . . . . . . . . . . . . . . . 76 Effective Listening . . . . . . . . . . . . . . . . . . . . 77

Concern . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .77 Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . . . 78 Power . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79 Culturally Sensitive Care . . . . . . . . . . . . . . 79

Nursing Professional Relationships . . . . . . . . . . . . . . .82

Nurse–Physician Relationships . . . . . . . . . . . . . .82 Nurse–Nurse Relationships . . . . . . . . . . . . . . . . .84

Horizontal Violence and Wounded Healers . . . . . . . . . . . . . . . . . . . . . . . . . . . 85

Improving Nurse–Nurse Relationships . . . 85 Nurses and Social Media . . . . . . . . . . . . . . . . . . . . . . . . .86

Moral Spaces and Blurred Lines . . . . . . . . . . . . .86 Social Media, Email, and Cell Phones . . . . . . . .86 Benefits of Using Social Media . . . . . . . . . . . . . .87

Perils of Using Social Media . . . . . . . . . . . . . . . . .87 Actual Cases of Violations . . . . . . . . . . . . . 88

Strategies for Using Social Media . . . . . . . . . . .90

PART II Nursing Ethics Across the Life Span 97

Chapter 4 Reproductive Issues and Nursing Ethics . . . . . . . . . . . . . . 99

Introduction to Ethics in Reproductive Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100

Reproductive Health . . . . . . . . . . . . . . . . . . . . . . 100

Moral Standing of Humans . . . . . . . . . . . . . . . . . . . . 101

Potentiality View . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102

Biological View . . . . . . . . . . . . . . . . . . . . . . . . . . . 103 Interests View . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103

Maternal–Fetal Conflict . . . . . . . . . . . . . . . . . . . . . . . . 104

Conflict of Rights Issues . . . . . . . . . . . . . . . . . . . . . . . . 105

Reproductive Rights . . . . . . . . . . . . . . . . . . . . . . 105 Civil Liberties and Legal Decisions . . . . . . . . 105

Abortion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107

Federal Abortion Ban Preventing Partial-Birth Abortion . . . . . . . . . . . . . . . . . . . 108

Pro-Choice Versus Pro-Life Views . . . . . . . . . . 109 Pro-Choice View . . . . . . . . . . . . . . . . . . . . 109 Pro-Life View . . . . . . . . . . . . . . . . . . . . . . . 110

Speaking Out . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111

Reproductive Technology . . . . . . . . . . . . . . . . . . . . . . 113

Ethical Issues of Reproductive Technology . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114

Issues of Other Reproductive Services . . . . . . . . . . 116

Genetic Screening and Testing . . . . . . . . . . . . 117 Maternal Substance Abuse . . . . . . . . . . . . . . . 118

Nursing Care of Childbearing Women . . . . . . . . . . 119

Chapter 5 Infant and Child Nursing Ethics . . . . . . . . . . . . . . . . . . . . . 125

Mothering . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125

Foundations of Trust . . . . . . . . . . . . . . . . . . . . . . . . . . . 126

Universal Vaccination . . . . . . . . . . . . . . . . . . . . . . . . . . 127

viii Contents

Children of Immigrant Families . . . . . . . . . . . . . . . . 129

Global Problems of Poverty and Infectious Diseases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131

Abused and Neglected Children . . . . . . . . . . . . . . . 133

Surrogate Decision Making . . . . . . . . . . . . . . . . . . . . 134

Withholding Information from Children . . . 135 Refusal of Treatment . . . . . . . . . . . . . . . . . . . . . . 135

Impaired and Critically Ill Children . . . . . . . . . . . . . . 136

Quality of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 136 Withholding and Withdrawing

Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137 1971: Johns Hopkins Cases . . . . . . . . . . . . 138 1984: Child Abuse Amendments

(Baby Doe Rules) . . . . . . . . . . . . . . . . . 138 Baby Jane Doe: Kerri-Lynn . . . . . . . . . . . 139 1993: In the Matter of Baby K . . . . . . . . . 141

The Influence of Nurses: Character . . . . . . . . . . . . . 141

Chapter 6 Adolescent Nursing Ethics . . . . . . . . . . . . . . . . . . . . . 145

The Age of Adolescence . . . . . . . . . . . . . . . . . . . . . . . 145

Ethical Issues and Concerns Involving Adolescents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146

Adolescent Relationships and Communication . . . . . . . . . . . . . . . . . . . . . . . 147

Confidentiality, Privacy, and Trust . . . . . . . . . 147 Trust–Privacy–Confidentiality

Dilemma . . . . . . . . . . . . . . . . . . . . . . . . 148 Limits of Confidentiality . . . . . . . . . . . . . . 148

Respect for Autonomy and Consent Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149

Adolescent Risk-Taking Behaviors, Nonmaleficence, and Beneficence . . . . . 150 Prevention Education for Adolescent

Risk-Taking Behaviors . . . . . . . . . . . . . 152 Pregnancy and Abortion Related to

Unprotected Sex . . . . . . . . . . . . . . . . . . 155 HIV and Other Sexually Transmitted

Infections Related to Unprotected Sex . . 155 Alcohol and Other Drug Abuse

Related to Adolescents . . . . . . . . . . . . . 156 Eating Disorders Related

to Adolescents . . . . . . . . . . . . . . . . . . . . 158

Depression and Suicide Ideation Related to Adolescents . . . . . . . . . . . . . 160

Sexual Abuse Related to Adolescents . . . . 160 Facing Death . . . . . . . . . . . . . . . . . . . . . . . 161

Nursing Care of Adolescents . . . . . . . . . . . . . . . . . . . 163

Trustworthiness . . . . . . . . . . . . . . . . . . . . . . . . . . 163 Genuineness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163 Compassion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163 Honesty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 164 Spiritual Considerations . . . . . . . . . . . . . . . . . . 164

Chapter 7 Adult Health Nursing Ethics . . . 169

Medicalization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 169

Compliance, Adherence, and Concordance . . . . . . . . . . . . . . . . . . . . . . 170

Valuing Self-Determination in a Medicalized Environment . . . . . . . . . . . . . . 171

Cultural Views on Medicalization and Treatment Regimens . . . . . . . . . . . . . . . . . . . 172

Chronic Disease and Illness . . . . . . . . . . . . . . . . . . . . 173

Ethical Concerns and Suffering . . . . . . . . . . . 175 Providing Ethical Care . . . . . . . . . . . . . . . . . . . . 176

Organ Transplantation . . . . . . . . . . . . . . . . . . . . . . . . . 177

Organ Transplant Ethical Issues During the Early Years . . . . . . . . . . . . . . . . . . 177

Organ Procurement . . . . . . . . . . . . . . . . . . . . . . 178 Fair Allocation of Organs . . . . . . . . . . . . . . . . . . 179 Ethical Issues of Death and the Dead

Donor Rule . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179 Nurses and Organ Donors . . . . . . . . . . . . . . . . 181

Chapter 8 Ethics and the Nursing Care of Elders . . . . . . . . . . . . . . 185

Aging in America . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 185

Life Meaning and Significance . . . . . . . . . . . . . . . . . 187

The Search for Meaning . . . . . . . . . . . . . . . . . . 188 Updating the Eriksonian Life Cycle . . . . . . . . 189

Moral Agency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 190

Decisional Capacity . . . . . . . . . . . . . . . . . . . . . . . 190 Autonomy and Paternalism . . . . . . . . . . . . . . . 191 Vulnerability and Dependence . . . . . . . . . . . . 193 Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 193

Contents ix

Virtues Needed by Elders . . . . . . . . . . . . . . . . . . . . . . 194

Courage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 194 Humility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195 Patience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195 Simplicity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195 Benignity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195 Integrity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195 Wisdom . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195 Detachment and Nonchalance . . . . . . . . . . . 196 Courtesy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 196 Hilarity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 196

Quality of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 197

Assessing the Capacity to Remain at Home . . . . 199

Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 200

Elder Abuse . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 202

Humanistic Nursing Care of Elders . . . . . . . . . . . . . 203

Chapter 9 Ethical Issues in End-of-Life Nursing Care . . . . . . . . . . . . . . . 207

What Is Death? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 208

The Ideal Death . . . . . . . . . . . . . . . . . . . . . . . . . . . 209 The Concept of Human Suffering

of Dying Patients . . . . . . . . . . . . . . . . . . . . . . . 210 Responsibility of Nurses Toward

Suffering Patients . . . . . . . . . . . . . . . . . . . . . . 211 Euthanasia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 211

Salvageability and Unsalvageability Principle . . . 213

Historical Influences on the Definition of Death . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 213

The Definition of Death . . . . . . . . . . . . . . . . . . . 214

Decisions About Death and Dying . . . . . . . . . . . . . 216

Advance Directives . . . . . . . . . . . . . . . . . . . . . . . 216 Surrogate Decision Makers . . . . . . . . . . . . . . . 217

Medical Futility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219

Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 221

The Right to Die and the Right to Refuse Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 222

Withholding and Withdrawing Life-Sustaining Treatment . . . . . . . . . . . . . . 223

Alleviation of Pain and Suffering in the Dying Patient . . . . . . . . . . . . . . . . . . . . 226

Rule of Double Effect . . . . . . . . . . . . . . . . . . . . . . . . . . 227

Terminal Sedation . . . . . . . . . . . . . . . . . . . . . . . . 227 Physician-Assisted Suicide . . . . . . . . . . . . . . . . 228

Rational Suicide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 228

Care for Dying Patients . . . . . . . . . . . . . . . . . . . . . . . . 230

Compassionate Nurses and Dying Patients . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 232

Physical and Emotional Pain Management . . . . . . . . . . . . . . . . . . . . . . . . . . 232

Types of Pain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 232

Spiritual Considerations . . . . . . . . . . . . . . . . . . 233

PART III Special Issues 239

Chapter 10 Psychiatric/Mental Health Nursing Ethics . . . . . . . . . . . . 241

Characteristics of Psychiatric Nursing . . . . . . . . . . . 241

A Value-Laden Specialty . . . . . . . . . . . . . . . . . . . . . . . 242

The Practice Area of Mental Health: Unique Characteristics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 244

Ethical Implications of Diagnosis . . . . . . . . . . 245 Stigma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 248

Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 250

Boundaries . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 250

Whose Needs Are Being Served? . . . . . . . . . . 252

Privacy, Confidentiality, and Privileged Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . 253

Privacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 253 Confidentiality . . . . . . . . . . . . . . . . . . . . . . . . . . . . 255 Privileged Communication . . . . . . . . . . . . . . . 255

Decisional Capacity . . . . . . . . . . . . . . . . . . . . . . . . . . . . 256

Statutory Authority to Treat . . . . . . . . . . . . . . . 256 Competence and Informed Consent . . . . . . 257 Psychiatric Advance Directives . . . . . . . . . . . . 257 Person-Centered Approach . . . . . . . . . . . . . . . 257 Humanistic Nursing Practice Theory . . . . . . 258 Human-to-Human Relationship Model . . . . 259 Recognizing Inherent Human

Possibilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . 259

Chapter 11 Public Health Nursing Ethics . . . . . . . . . . . . . . . . . . . 263

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 263

Setting the Stage: Public Health Is Controversial . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 265

x Contents

Ethical Approaches to Public Health . . . . . . . . . . . 266

Kantian Ethics (Deontology) . . . . . . . . . . . . . . 266 Utilitarianism (Consequentialism) . . . . . . . . . 266 Communitarian Ethics . . . . . . . . . . . . . . . . . . . . 267 Social Justice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 268

Virtue Ethics: Just Generosity . . . . . . . . . . . . . . . . . . . 269

Health Disparities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 270

The Precautionary Principle . . . . . . . . . . . . . . . . . . . . 272

Environmental Justice . . . . . . . . . . . . . . . . . . . . . . . . . 274

Communicable Diseases . . . . . . . . . . . . . . . . . . . . . . . 275

Malaria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 276 Tuberculosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 276 HIV/AIDS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 277

HIV Testing . . . . . . . . . . . . . . . . . . . . . . . . 278 Confidentiality . . . . . . . . . . . . . . . . . . . . . 279 Duty to Provide Care . . . . . . . . . . . . . . . . 281

Pandemic Influenza . . . . . . . . . . . . . . . . . . . . . . . 281

Terrorism and Disasters . . . . . . . . . . . . . . . . . . . . . . . . 288

Genomics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 290

Public Health Nursing: Contributing to Building the World . . . . . . . . . . . . . . . . . . . . . . . . . . 292

Service Learning . . . . . . . . . . . . . . . . . . . . . . . . . . 292 Servant Leadership . . . . . . . . . . . . . . . . . . . . . . . 293

Chapter 12 Ethics in Organizations and Leadership . . . . . . . . . . . 299

Organizational Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . 299

Organizational Culture and the Ethical Climate . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 300

Organizational Integrity and Trust . . . . . . . . . . . . . . 301

Jennings’s Seven Signs of Organizational Ethical Collapse . . . . . . . . . . . . . . . . . . . . . . . . 303 Pressure to Maintain Numbers . . . . . . . . . 303 Fear and Silence . . . . . . . . . . . . . . . . . . . . 303

Young ’Uns and a Bigger-than-Life CEO . . . . . . . . . . . . . . . . . . . . . . . . . . . . 303

Weak Board . . . . . . . . . . . . . . . . . . . . . . . . 303 Conflicts . . . . . . . . . . . . . . . . . . . . . . . . . . . 304 Innovation Like No Other . . . . . . . . . . . . 304 Goodness in Some Areas Atones for

Evil in Others . . . . . . . . . . . . . . . . . . . . 304 Compliance and Ethics Programs . . . . . . . . . 304 Occupational Fraud and Abuse . . . . . . . . . . . 305

Conflicts of Interest . . . . . . . . . . . . . . . . . . 306 Healthcare Fraud . . . . . . . . . . . . . . . . . . . 308

Leadership Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 311

Normative Leadership Theories . . . . . . . . . . . 312 Servant Leaders . . . . . . . . . . . . . . . . . . . . . 312 Transformational Leaders . . . . . . . . . . . . 312 Authentic Leaders . . . . . . . . . . . . . . . . . . . 313

Leader Challenges . . . . . . . . . . . . . . . . . . . . . . . . 313 Using Power to Achieve Leader

Success . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 315 Collaboration . . . . . . . . . . . . . . . . . . . . . . 316 Quality . . . . . . . . . . . . . . . . . . . . . . . . . . . . 316 Leader Succession Planning . . . . . . . . . . . 316

Appendix A: Case Studies . . . . . . . . . . . . . . . . . . . . . .319

Appendix B: ICN Code of Ethics . . . . . . . . . . . . . . . . .343

Appendix C: Mississippi Advance Directive Planning for Important Healthcare Decisions Caring Connections . . . . . . . . . . . . . . . . . . . . . . . . . . .349

Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .355

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .367

Contents xi

© Gajus/iStock/Getty Images

Preface Rules and theories matter little without the formation of good character.

We are honored by our book’s pop-ularity among nurse educators, students, and other nurses. Our highest compliments came from two users of the previous editions: “I have never found any- one who said it better than Butts and Rich” and “You provide one of the best and most accessi- ble overviews for students of how the common 4-principles framework can be both sensitive to many of the issues that care ethics raises and compatible with the development of particu- lar ethical competencies in nursing practice.” We hope readers will find the Fifth Edition an even better resource for teaching and learning nursing ethics.

This is a very exciting time in the hist- ory of nursing. Although nurses continue to experience many difficulties in their prac- tice, they have more autonomy than ever be- fore. With autonomy comes responsibility. For the front cover, we chose a flower planted in soil lying in the hands of a nurse or nurse ed- ucator. This choice is a metaphor for nurses’ cultivating and shaping the ethical practice of nurses or students. To practice ethically, nurses must be able to apply practical wis- dom and critical thinking, which are best cul- tivated through habit and education. Virtues such as compassion, truthfulness, benevo- lence, and justice make up a nurse’s cultivating tools. The reader will notice the rich soil sur- rounding the healthy flower. We hope the con- tent in our book will help nurses and students

to cultivate the wisdom and virtues needed to bring a healthy moral climate to their practice.

▸ American Association of Colleges of Nursing Recommendations in 2008

The American Association of Colleges of Nursing’s (AACN’s) Essentials of Baccalaure- ate Education for Professional Nursing Prac- tice (2008) recommends an inclusion of nursing ethics and ethical decision-making strategies in nursing curricula. The AACN (2008) stated the following in the rationale for Essential VIII, Professionalism and Pro- fessional Values:

Baccalaureate education includes the development of professional values and value-based behavior. Under- standing the values that patients and other health professionals bring to the therapeutic relationship is criti- cally important to providing quality patient care. Baccalaureate gradu- ates are prepared for the numerous dilemmas that will arise in practice and are able to make and assist others in making decisions within a profes- sional ethical framework. Ethics is an integral part of nursing practice and has always involved respect and

xii

advocacy for the rights and needs of patients regardless of setting. Hon- esty and acting ethically are two key elements of professional behavior, which have a major impact on patient safety. (p. 27)

Some of the moral issues nurses encoun- ter on a daily basis leave nurses on uncertain ethical ground. When nurses become bogged down in ethical situations, such as death, abor- tion, or saving premature infants, nurses will most likely experience moral distress. Nurses must be prepared to attach their own mean- ings to life and death, and nursing students and practicing nurse clinicians need to acquire foundational knowledge about ethics, ethi- cal reasoning, and decision-making strate- gies to prepare them for the ethical issues they will encounter daily. Included in this book are decision-making approaches and models, ra- tionale for decisions, and various topics about ethical patient care.

▸ NCLEX-RN® Test Plan for 2016

The National Council of State Boards of Nurs- ing’s 2016 NCLEX-RN ® Test Plan has as its goal for nursing care in any setting “preventing ill- ness and potential complications; protecting, promoting, restoring, and facilitating comfort; health; and dignity in dying” (p. 3). Examples of the integration of ethics into the test plan in- clude the following:

■ NCLEX-RN Test Plan: Safe and Effec- tive Care Environment—Management of Care (p. 6)

■ Ethical practice ■ Ethical dilemmas ■ NCLEX-RN Test Plan: Psychosocial

Integrity (p. 7) ■ End-of-life care

■ Grief and loss ■ Religious and spiritual influences on health

▸ Purposes and Readership

We have four purposes for this book. First, we wanted to provide a nursing ethics book with an exploration of a wide array of ethical is- sues in nursing. We included bioethical issues nurses encounter every day—the ones Fry and Veatch (2000) stated are the “flesh and blood” issues (p. 1)—but we also covered issues from a humanistic perspective. In the body of the text, we included theoretical foundations, the most current scholarly literature and clinical evidence, related news briefs, research notes, ethical reflections, and legal perspectives sur- rounding ethics topics.

Second, a prominent feature of this book is its “across the curriculum” format for un- dergraduate nursing students. The book can be used as a supplementary textbook in each nursing course. We believe that if ethical con- cepts and bioethical issues are integrated in the beginning of nursing programs and through- out curricula, students will become more mindful of the myriad of ethical challenges they will face in practice and then become ha- bituated to resolving conflicts ethically. Ulti- mately, we believe nurses with knowledge of ethics will want to find ways to participate in the large-scale bioethical deliberations and de- cision making regarding their patients’ and families’ life and death issues.

As a third purpose, RN to BSN students also can use this book in their curricula, espe- cially in ethics, professional development, or leadership courses. Even though RN to BSN stu- dents bring a wealth of real flesh-and-blood ex- periences with them to share in the classroom, they often return to school without substantial exposure to ethics classes or ethical content.

Preface xiii

or questions concerning the book, questions about ethics, or any questions you may have regarding the case studies in Appendix A or the multiple choice questions in the instruc- tor’s materials. We appreciate your support!

▸ References American Association of Colleges of Nursing (AACN).

(2008). The essentials of baccalaureate education for professional nursing practice . Retrieved from https:// www.aacnnursing.org/Portals/42/Publications/Bacc Essentials08.pdf

Fry, S. T., & Veatch, R. M. (2000). Case studies in nursing ethics (2nd ed.). Sudbury, MA: Jones and Bartlett.

National Council of State Boards of Nursing. (2016). NCLEX-RN ® detailed test plan for 2016 . Retrieved from https://www.ncsbn.org/2016_RN_DetTestPlan _Educator.pdf

The last part of the book’s title, “Into Prac- tice,” is related to the book’s fourth purpose. Nurses’ work is nursing ethics. The content of the book will stimulate the moral imagination of nurses so they can integrate ethical princi- ples, theories, and decision-making skills into their everyday practice.

▸ Comments and Feedback

We are dedicated to making this book the one that will meet your needs for the future. We are interested in your comments about the book. Please email us at [email protected] .edu or [email protected] with feedback

xiv Preface

1 © Gajus/iStock/Getty Images

PART I

Theories and Concepts CHAPTER 1 Introduction to Ethics . . . . . . . . . . . . . . . . . . . . . . 3

CHAPTER 2 Introduction to Bioethics and Ethical Decision Making . . . . . . . . . . . . . . . . . . . . . . . . . 27

CHAPTER 3 Ethics in Professional Nursing Practice . . . . . . . 59

© Gajus/iStock/Getty Images

Introduction to Ethics Karen L. Rich

A seed will only become a flower if it gets sun and water.

—Louis Gottschalk

▸ Introduction to Ethics In the world today, “we are in the throes of a giant ethical leap that is essentially embracing all of humankind” (Donahue, 1996, p. 484). Scientific and technological advances, eco- nomic realities, pluralistic worldviews, and global communication make it difficult for nurses to ignore the important ethical issues in the world community, their everyday lives, and their work. As controversial and sensitive ethical issues continue to challenge nurses and other healthcare professionals, many profes- sionals have begun to develop an appreciation for traditional philosophies of ethics and the diverse viewpoints of others.

Ethical directives are not always clearly evident, and people sometimes disagree about what is right and wrong. These factors lead some people to believe ethics can be based merely on personal opinions. However, if nurses are to enter into the global dialogue about ethics, they must do more than practice ethics based simply on their personal opin- ions, their intuition, or the unexamined beliefs proposed by other people. It is important for nurses to have a basic understanding of the concepts, principles, approaches, and theories used in studying ethics throughout history so they can identify and analyze ethical issues and dilemmas relevant to nurses in the 21st cen- tury. Mature, ethical sensitivities are critical to

OBJECTIVES

After reading this chapter, the reader should be able to do the following:

1. Define the terms ethics and morals and discuss philosophical uses of these terms. 2. Discuss systems of moral reasoning as they have been used throughout history. 3. Evaluate a variety of ethical theories and approaches to use in personal and professional

relationships.

3

CHAPTER 1

ethical practice, and as Hope (2004) proposed, “we need to develop our hearts as well as our minds” (p. 6).

The Meaning of Ethics and Morals When narrowly defined according to its origi- nal use, ethics is a branch of philosophy used to study ideal human behavior and ways of being. The approaches to ethics and the meanings of related concepts have varied over time among philosophers and ethicists. For example, Ar- istotle believed ideal behaviors are practices leading to the end goal of eudaimonia, which is synonymous with a high level of happiness or well-being; on the other hand, Immanuel Kant, an 18th-century philosopher and eth- icist, believed ideal behavior is acting in ac- cordance with one’s duty. For Kant, well-being meant having the freedom to exercise auton- omy (self-determination), not being used as a means to an end, being treated with dignity, and having the capability to think rationally.

As a philosophical discipline of study, ethics is a systematic approach to understand- ing, analyzing, and distinguishing matters of right and wrong, good and bad, and admirable and dishonorable as they relate to the well-being of and the relationships among sentient beings. Today, even relationships between people and their environment have entered the realm of eth- ics. Ethical determinations are applied through the use of theories, approaches, and codes of conduct, such as codes developed for profes- sions and religions. Ethics is an active process rather than a static condition, so some ethicists use the expression doing ethics. When people are doing ethics, they need to support their beliefs and assertions with sound reasoning.

Feelings and emotions are a normal part of everyday life and can play a legitimate role in doing ethics. However, people sometimes allow their emotions to overtake good reason- ing; when this happens, it does not provide a good foundation for ethics-related decisions. Evaluations generated through the practice of ethics require a balance of emotion and reason.

Throughout history, people, based on their culture, have engaged in actions they believe are justifiable only to have the light of reason later show otherwise. Following a charismatic but egocentric leader such as Adolf Hitler is an example of such a practice.

ETHICAL REFLEC TION

Consider a person who believes abortion is wrong based on the position that human life is sacred. Can this same person logically justify that the death penalty is a moral action? Discuss.

As contrasted with ethics, morals are specific beliefs, behaviors, and ways of being derived from doing ethics. One’s morals are judged to be good or bad through systematic, ethical analysis. The reverse of morality is im- morality, which means a person’s behavior is in opposition to accepted societal, religious, cultural, or professional ethical standards and principles; examples of immorality in- clude dishonesty, fraud, murder, and sexually abusive acts. Amoral is a term used to refer to actions normally judged as immoral, but the actions are done with a lack of concern for good character, one’s duty, or the conse- quences. For example, murder is immoral, but if a person commits murder with absolutely no sense of remorse or maybe even with a sense of pleasure, the person is acting in an amoral way. Acts are considered to be nonmoral if moral standards essentially do not apply to the acts; for example, choosing between cereal or toast and jam for breakfast is a nonmoral decision.

When people consider matters of ethics, they usually are considering matters about freedom in regard to personal choices, one’s obligations to other sentient beings, or judg- ments about human character. The term un- ethical is used to describe ethics in its negative form, for instance, when a person’s character or behavior is contrary to admirable traits

4 Chapter 1 Introduction to Ethics

Antonio Thomas
Antonio Thomas
Antonio Thomas
Antonio Thomas
Antonio Thomas

or the code of conduct endorsed by one’s so- ciety, community, or profession. Because the word ethics is used when one may actu- ally be referring to a situation of morals, the process-related, or doing, conception of ethics is sometimes overlooked today. People often use the word ethics when referring to a collec- tion of actual beliefs and behaviors, thereby using the terms ethics and morals interchange- ably. In this text, some effort has been made to distinguish the words ethics and morals based on their literal meanings; however, because of common uses, the terms have generally been used interchangeably.

The following features regarding the con- cepts of morals and ethics were adapted from Billington (2003):

■ Probably the most important feature about ethics and morals is that no one can avoid making ethical decisions because social connections with others necessitates that people must consider moral and ethical actions.

■ Other people are always involved with one’s ethical decisions. Private morality does not exist.

■ Ethical decisions matter because one per- son’s decisions often affect someone else’s life, self-esteem, or happiness.

■ It is difficult to reach definite conclusions or resolutions in ethical debates.

■ In the area of morals and ethics, people cannot exercise ethical judgments with- out being given a choice; in other words, a necessity for making a sound ethical judg- ment is being able to choose an option from among a number of choices.

■ People use moral reasoning to make moral judgments or to discover right actions.

Types of Ethical Inquiry Ethics is categorized according to three types of inquiry or study: normative ethics, metaeth- ics, and descriptive ethics. The first approach, normative ethics, is an attempt to decide or prescribe values, behaviors, and ways of being

that are right or wrong, good or bad, admira- ble or dishonorable. When using the method of normative ethics, inquiries are made about how humans should behave, what ought to be done in certain situations, what type of char- acter one should have, or the type of person one should be.

LEGAL PERSPEC TIVE

Common law is based on customs and previously decided cases rather than on statutes.

Outcomes of normative ethics are the prescriptions derived from asking normative questions. These prescriptions include ac- cepted moral standards and codes. One such accepted moral standard identified by Beau- champ and Childress (2013) is the common morality. The common morality consists of normative beliefs and behaviors that members of a society generally agree about and are fa- miliar to most members of the society. These norms develop within the context of history and form a “social compact” (p. 3) about how people should behave. Because it forms what can be thought of as a universal morality with a wide scope, the common morality provides society with a framework of ethical stability. The common morality contains rules of ob- ligation, character traits, and common moral ideals. The beliefs that it is moral to tell the truth, exhibit loving-kindness, and be charita- ble are part of the common morality, whereas abortion is not a part of the common morality because of the many varying positions about its rightness or wrongness. Gert, Culver, and Clouser (2006) contended that many people mistakenly believe there is little agreement about moral matters, whereas in reality, con- troversial issues are actually the focus of only a small part of ethical decision making.

Particular nonuniversal moralities ad- hered to by specific groups can be distinguished

Introduction to Ethics 5

Antonio Thomas

from the common morality (Beauchamp & Childress, 2013). Particular moralities, such as those based on a certain ethical theory or ap- proach (see those discussed later in this chap- ter) or a profession’s moral norms and codes, are heavily content laden and specific rather than general in nature. Yet these nonuniversal moralities generally are consistent with socially sanctioned beliefs falling under a common morality. The Code of Ethics for Nurses with Interpretive Statements (American Nurses As- sociation, 2015) is a specific morality for profes- sional nurses in the United States. A normative belief posited in the code is that nurses ought to be compassionate; that is, nurses should work to relieve suffering. Nurses have specific obli- gations that are different from the obligations of other people. As risks and dangers for nurses become more complex, the profession’s moral- ity must evolve and be continually reexamined. Nurses might ask themselves these normative questions: Do I have an obligation to endanger my life and the life of my family members by working during a highly lethal influenza pan- demic? Do I have an obligation to stay at work in a hospital during a category 5 hurricane rather than evacuating with my family? The answers to these questions may generate strong emotions, confusion, or feelings of guilt.

ethically related concepts and theories, such as the meaning of good, happiness, and virtuous character. For example, a nurse who is actively engaged in a metaethical analysis might try to determine the meaning of a good nurse– patient relationship.

Descriptive ethics is often referred to as a scientific rather than a philosophical ethical inquiry. It is an approach used when research- ers or ethicists want to describe what people think about morality or when they want to describe how people actually behave, that is, their morals. Professional moral values and behaviors can be described through nursing research. An example of descriptive ethics is research that identifies nurses’ attitudes re- garding telling patients the truth about their terminal illnesses.

Ethical Perspectives Though it may seem somewhat contrary to the contention that there is an understandable common morality, ethical thinking, valuing, and reasoning are believed to fall somewhere along a continuum between two opposing views: ethical relativism and ethical objectiv- ism. After reading the following discussion about ethical perspectives, it probably will seem sensible to reflect on the meaning of phi- losophy and why ethics is a philosophical pur- suit. Ethical issues and discussions frequently have blurred edges. They do not fit into a circumscribed mold. However, this does not make doing ethics merely an opinion-based endeavor, though one can reasonably argue that extremes of ethical relativism come close.

Ethical Relativism Ethical relativism is the belief that it is accept- able for ethics and morality to differ among persons or societies. There are two types of ethical relativism: ethical subjectivism and cultural relativism (Brannigan & Boss, 2001). People who subscribe to a belief in ethical subjectivism believe “individuals create

LEGAL PERSPEC TIVE

Some actions may be legal, but people do not agree that the actions are moral. Research and debate issues such as the following:

Breaking promises Abortion Palliative or terminal sedation

The focus of metaethics, which means about ethics, is not an inquiry about what ought to be done or which behaviors should be prescribed. Instead, metaethics is con- cerned with understanding the language of morality through an analysis of the meaning of

6 Chapter 1 Introduction to Ethics

Antonio Thomas
Antonio Thomas
Antonio Thomas
Antonio Thomas

their own morality [and] there are no objec- tive moral truths—only individual opinions” (2001, p. 7). People’s beliefs about actions being right or wrong or good or bad depend on how people feel about actions rather than on reason or systematic ethical analysis. What one person believes to be wrong might not be viewed as wrong by one’s neighbor, depending on vari- ations in opinions and feelings. These differ- ences are acceptable to ethical subjectivists.

Ethical subjectivism has been distin- guished from cultural relativism. Pence (2000) defined cultural relativism as “the ethical theory that moral evaluation is rooted in and cannot be separated from the experience, be- liefs, and behaviors of a particular culture, and hence, that what is wrong in one culture may not be so in another” (p. 12). People who are opposed to cultural relativism argue that when it is practiced according to its extreme or literal meaning, this type of thinking can be dangerous because it theoretically may sup- port relativists’ exploitative or hurtful actions (Brannigan & Boss, 2001). An example of cultural relativism is the belief that the act of female circumcision, sometimes called female genital mutilation, is a moral practice. Though not considered to be a religious ritual, this act is considered ethically acceptable by some groups in countries with a Muslim or an Egyp- tian Pharaonic heritage. In most countries and cultures, however, it is considered to be a grave violation in accordance with the United Na- tions’ Declaration of Human Rights.

Ethical Objectivism Ethical objectivism is the belief that univer- sal, or objective, moral principles exist. Many philosophers and healthcare ethicists hold this view, at least to some degree, because they strictly or loosely adhere to a specific approach in determining what is good. Examples of ob- jectivist ethical theories and approaches are deontology, utilitarianism, and natural law theory, which are discussed later in this chapter. Though some ethicists believe these theories

or approaches are mutually exclusive, theor- ies and approaches often overlap when used in practice. “Moral judgment is a whole into which we must fit principles, character and intentions, cultural values, circumstances, and consequences” (Brannigan & Boss, 2001, p. 23).

ETHICAL REFLEC TION

Where does your personal worldview fall on the continuum between ethical relativism and ethical objectivism? Defend your position.

▸ Values and Moral Reasoning

Because ethics falls within the abstract disci- pline of philosophy, ethics involves many per- spectives of what people value as meaningful and good in their lives. A value is something of worth or highly regarded. Values refer to one’s evaluative judgments about what one be- lieves is good or makes something desirable. The things people esteem to be good influence how personal character develops and people think and subsequently behave. Professional values are outlined in professional codes. A fundamental position in the American Nurses Association’s Code of Ethics for Nurses with In- terpretive Statements (2015) is that professional and personal values must be integrated. Values and moral reasoning in nursing fall under the domain of normative ethics; that is, pro- fessional values contained in the code guide nurses in how they ought to be and behave.

Reasoning is the use of abstract thought processes to think creatively, answer questions, solve problems, and formulate strategies for one’s actions and desired ways of being. When people participate in reasoning, they do not merely accept the unexamined beliefs and ideas of other people. Reasoning involves thinking for oneself to determine if one’s conclusions

Values and Moral Reasoning 7

Antonio Thomas
Antonio Thomas
Antonio Thomas
Antonio Thomas
Antonio Thomas

are based on good or logical foundations. More specifically, moral reasoning pertains to rea- soning focused on moral or ethical issues. Moral reasoning for nurses usually occurs in the context of day-to-day relationships between nurses and the recipients of their care and be- tween nurses and their coworkers and others within organizations.

Different values, worldviews, and ways of moral reasoning have evolved throughout history and had different points of emphasis in various historical periods. In regard to some approaches to reasoning about moral issues, what was old becomes new again, as in the case of the renewed popularity of virtue ethics, or the concept of reasoning as would be practiced by a person with good character.

Ancient Greece In Western history, much of what is known about formal moral reasoning generally be- gan with the ancient Greeks, especially with the philosophers Socrates (ca. 469–399 BCE), Plato (ca. 429–347 BCE), and Aristotle (384– 322 BCE). Though there are no primary texts of the teachings of Socrates (what we have of his teachings were recorded by Plato), it is known that Socrates was an avid promoter of moral reasoning and critical thinking among the citizens of Athens. Socrates is credited with the statement “the unexamined life is not worth living,” and he developed a method of reasoning called Socratic questioning, or the Socratic method, which is still used today.

In using his method of inspiring open- mindedness and critical thinking, Socrates posed challenging questions and then would ask another question about the answers he received. A goal of participating in a Socratic dialogue is to investigate the accuracy, clarity, and value of one’s intellectual positions and be- liefs. An example of his method of questioning is as follows:

Socrates: Why should a nurse study ethics? Nurse: To be a good nurse. Socrates: What is a good nurse?

Nurse: It means my patients are well taken care of.

Socrates: How do you know your patients are well taken care of ?

This line of questioning should continue until the concepts and positions stemming from the original question are thoroughly explored. Socratic questioning does not mean one ends up with a final answer; however, this form of discussion encourages people to continually expand their thinking in critical and reflect- ive ways.

ETHICAL REFLEC TION

In small groups, begin a Socratic dialogue with classmates or colleagues. Develop your own questions, or use one of the following examples. A Socratic dialogue should be civil, nonthreatening, and supportive of learning; it is not a means to belittle people who have beliefs different from one’s own. After your dialogue, share your understandings with other groups.

■ What does caring mean in nursing? ■ What does competence mean in nursing? ■ What is academic integrity?

Socrates had many friends and allies who believed in his philosophy and teach- ings. In fact, Socrates was such a successful and well-known teacher of philosophy and moral reasoning in Athens that he was put to death for upsetting the sociopolitical status quo. Socrates was accused of corrupting the youth of Athens who, under his tutelage, be- gan to question their parents’ wisdom and reli- gious beliefs. These accusations of corruption were based on Socrates’s encouraging people to think independently and question dogma generated by the ruling class. Though he was sentenced to death by the powerful, elite men within his society, Socrates refused to apolo- gize for his beliefs and teachings. He ultimately

8 Chapter 1 Introduction to Ethics

Antonio Thomas

chose to die by drinking poisonous hemlock rather than deny his values.

Plato, Socrates’s student, is believed by some to have been the most outstanding phi- losopher to have ever lived. Plato’s reasoning is based on his belief that there are two realms of reality. The first is the realm of Forms, which transcends time and space. According to Plato, an eternal, perfect, and unchanging ideal copy (Form) of all phenomena exists in the realm of Forms, which is beyond everyday human ac- cess. Plato believed the realm of Forms contains the essence of concepts and objects and even the essence of objects’ properties. Essences ex- isting in the realm of Forms include, for exam- ple, a perfect Form of good, redness (the color red), or a horse. In the realm of Forms, the es- sence of good exists as ideal Truth, and redness (a particular property of some objects, such as an apple) exists as the color red in its most per- fect state. A horse in the realm of Forms is the perfect specimen of the animal that is a horse, and this perfect horse contains all the horse- ness factors that, for example, distinguish a horse from a cow. Plato considered the world of Forms to be the real world, though humans do not live in this world.

The second realm is the world of Appear- ances, which is the everyday world of imper- fect, decaying, and changing phenomena; this is the world in which humans live. The under- lying purpose, or goal, of imperfect phenom- ena in the world of Appearances is to emulate their associated essences and perfect Forms. For example, a horse’s purpose in life is to strive toward becoming identical to the perfect specimen of a horse that exists in the world of Forms.

Plato also proposed that humans have a tripartite soul. The three parts of the soul con- sist of the Faculty of Reason, associated with thought and Truth, which is located in one’s head; the Faculty of Spirit, which expresses love, beauty, and the desire for eternal life and is located in one’s chest; and the Faculty of Ap- petite, which is an expression of human desires and emotions and is located in one’s gut. Plato

believed the influences of these three parts of the soul exist in greater to lesser degrees in each person. Therefore, one person may be more disposed to intellectual pursuits as com- pared to another person who is more inter- ested in physical pleasures.

Plato associated the tripartite soul with three classes of Greek society and one’s best-suited occupation. People were believed to have an individual aptitude particularly suited to them and their purpose in society:

■ Philosopher kings were associated with the Faculty of Reason and wisdom.

■ Societal guardians were associated with the Faculty of Spirit and protecting others.

■ Artisans and craftsmen were associated with the Faculty of Appetite and technical work.

FOCUS FOR DEBATE

If Florence Nightingale were alive today and she took the position that nurses represent Plato’s guardian class and physicians represent the artisan class, would she be correct?

Florence Nightingale, the founder of mod- ern nursing, was a passionate student of an- cient Greek philosophy. Nightingale may have aligned the function of nurses with the Faculty of Spirit (LeVasseur, 1998). Because of her ed- ucation in classical Greek literature and culture and her views about nursing, LeVasseur pro- posed that Nightingale might have compared her purpose as a nurse with the role of a societal guardian. In contrast, early physicians, whose profession developed through apprenticeship guilds, which emphasized technical practices, might be compared to the artisan class.

One of Plato’s most famous stories about reasoning is his allegory of the cave. In this story, a group of people lived their lives chained to the floor of a cave. Behind them burned a fire that cast shadows of people moving on the wall in front of the people who were chained.

Values and Moral Reasoning 9

Antonio Thomas

The chained prisoners believed the shadows were actually real people. When one of the prisoners was freed from his chains, he left the cave. First, he was blinded by the brightness of the sun. After his sight adjusted to the light, he saw objects he realized were more real than the shadows within the cave. The freed person re- turned to the cave to encourage the other pris- oners to break their chains and enter the more expansive world of reality. The meaning of this story has been interpreted in many ways. Whatever Plato’s intended meaning, the story does prompt people to think about the prob- lems that result when they remain chained by their closed minds and flawed reasoning.

Plato’s student Aristotle developed sci- ence, logic, and ethics to world-altering pro- portions. Though he was influenced by Plato, Aristotle took a more practical approach to reasoning than believing in an otherworldly realm of ideal Forms. He was guided in his  reasoning by his belief in the importance of empirical inquiry. He also believed all things have a purpose, or end goal (telos), sim- ilar to Plato’s proposition that the goal of all things is to strive to be like their perfect Form. In Nicomachean Ethics, Aristotle (trans. 2002) discussed practical wisdom (phronesis) as being necessary for deliberation about what is good and advantageous if people want to move toward their human purpose, or desired end goal, of happiness or well-being ( eudaimonia). Aristotle believed a person needs education to cultivate phronesis to achieve intellectual excellence.

Aristotle’s conception of phronesis is sim- ilar to Plato’s conception of the virtue of pru- dence. Wisdom is focused on the good achieved from being wise, which means one knows how to act in a particular situation, deliberates well, and has a disposition embodying excellence of character. Therefore, in ancient Greece, pru- dence is more than simply having good inten- tions or meaning well; it is knowing what to do and how to be but also involves transforming knowledge into well-reasoned actions. Aris- totle believed people are social beings whose reasoning should lead them to be good citizens and friends and to act in moderate ways.

The Middle Ages After the Roman Empire was divided by bar- barians and the Roman Emperor Romulus was dethroned (ca. 476 CE), the golden age of in- tellectualism and cultural progress in Western Europe ended. The next historical period was the Middle, or Dark, Ages, which lasted until about 1500 CE. In the gap left by the failed political system of Rome, Christianity became the dominant religion in Western Europe as the Catholic Church took on the powerful role of educating European people. Christianity is a monotheistic (one God) revelatory religion, whereas ancient Greek philosophy was based on the use of reason and polytheism (many gods). Because Greek philosophy was believed to be heretical, its examination was discour- aged during the church-dominated Middle Ages. However, it is interesting that two Cath- olic saints, Augustine and Aquinas, who pro- vided the major ethical influence during the Middle Ages, were both influenced by the an- cient Greeks.

Saint Augustine (354–430 CE) is often considered to be the Plato of the Middle Ages. Though Augustine was a Christian and Plato was a non-Christian, Augustine’s belief in a heavenly place of unchanging moral truths is similar to Plato’s belief in the realm of ideal Forms. Augustine believed these Truths are

ETHICAL REFLEC TION

Compare Plato’s allegory of the cave to critical thinking in nursing. Think of a few personal examples when you were chained in the cave. What were the circumstances? What were the outcomes? What made a difference in your thinking?

10 Chapter 1 Introduction to Ethics

Antonio Thomas
Antonio Thomas

imprinted by God on the soul of each human being. According to Augustine, one has a duty to love God, and moral reasoning should dir- ect one’s senses in accordance with that duty; being subject to this obligation is what leads to moral perfection. Generally, Saint Augus- tine believed in the existence of only good, similar to how the essence of good would exist if it were an ideal Form. Therefore, evil is present only when good is missing or has in some way been perverted from its existence as an ideal Truth.

Augustine was 56 years old during the fall of the Roman Empire. In one of his most fa- mous writings, The City of God, Augustine used the fall of the Roman Empire to explain a phi- losophy sometimes compared to Plato’s concep- tion of the worlds of Forms and Appearances. People who live according to the spirit live in the City of God (world of perfection/Forms), whereas people who live according to the flesh live in the City of Man (world of imperfection/ Appearances). To move away from evil, one must have the grace of God. Augustine viewed humans as finite beings who must have the divine aid of grace to bridge the gap required to have a relationship with the infinite being of God.

The Crusades influenced Europe’s ex- odus from the Dark Ages. When Christians entered Islamic lands, such as Spain, Portugal, and North Africa, they were reintroduced to intellectualism, including texts of the ancient Greeks, especially Aristotle. The moral teach- ings of Saint Thomas Aquinas (1224–1274) are sometimes viewed as a Christianized ver- sion of Aristotle’s ethical teachings. Aquinas tried to reconcile Aristotle’s teachings with the teachings of the Catholic Church. Like Aristotle, Aquinas believed people have a de- sirable end goal, or purpose, and develop- ing excellences of character (virtues) leads to human happiness and good moral reasoning. Aristotle’s non-Christian moral philosophy is based on humans moving toward an end goal, or dynamic state, of eudaimonia (happiness or

well-being) through the cultivation of excel- lent intellect and moral character.

Aquinas expanded Aristotle’s concep- tion of the end goal of perfect happiness and grounded the requirements for happiness in the knowledge and love of God and Christian virtues. Aquinas replaced Aristotle’s emphasis on the virtue of pride with an emphasis on the virtue of humility. Aristotle believed pride is an important characteristic of independent, strong men, whereas Aquinas valued the char- acteristic of humility because it represented to him one’s need to depend on the benevolence of God. In addition to virtue ethics, Aquinas is associated with a belief in reasoning accord- ing to the natural law theory of ethics. Both of these ethical approaches are covered later in this chapter.

Modern Philosophy and the Age of Enlightenment The period of modern philosophy began when the Catholic Church, the major intellectual force during the Middle Ages, began to have a diminishing influence within society while the influence of science began to increase. The sci- entific revolution began in 1543, when Coper- nicus discovered that the Earth and humans are not the center of the universe, but this rev- olution did not rapidly advance until the 17th century, when Kepler and Galileo moved sci- entific debates to the forefront of society.

With these changes came a new freedom in human moral reasoning based on people being autonomous, rational-thinking crea- tures rather than primarily being influenced and controlled by Church dogma and rules. During the 18th-century Enlightenment era, humans believed they were coming out of the darkness of the Middle (Dark) Ages into the light of true knowledge.

Some scientists and philosophers were bold enough to believe humans could ulti- mately be perfected and all knowledge could be discovered. As the belief in empirical

Values and Moral Reasoning 11

science grew, a new way of thinking was ush- ered in that compared both the universe and people to machines. Many scientists and phi- losophers believed the world, along with its in- habitants, could be reduced through analyses into their component parts. These reduction- ists hoped that after most or all knowledge was discovered, the universe and human behavior could be predicted and controlled. People still demonstrate evidence of this way of thinking in health care today when cure is highly valued over care and uncertainty is considered to be something that can or needs to be eliminated in regard to health and illness. A mechanistic approach is one that focuses on fixing prob- lems as if one is fixing a machine, as contrasted to a humanistic, or holistic, approach, in which one readily acknowledges that well-being and health occur along a complex continuum and some situations and health problems cannot be predicted, fixed, or cured.

According to people who believe in the truth of the fact/value distinction, the chance of Sara spreading her fleas to the sofa might be a fact if she sleeps on it, but determining that having fleas on the sofa is a bad thing is based on only one’s values or feelings.

Postmodern Era After the scientific hegemony of the Enlight- enment era, some people began to question whether a single-minded allegiance to science was creating problems for human societies. Postmodernism is often considered to have begun around 1950, after the end of World War II. However, some people trace its begin- nings back to German philosopher Friedrich Nietzsche in the late 1800s. Pence (2000) de- fined postmodernism as “a modern movement in philosophy and the humanities that rejects the optimistic view that science and reason will improve humanity; it rejects the notion of sustained progress through reason and the sci- entific method” (p. 43). The postmodern mind is formed by a pluralistic view, or a diversity of intellectual and cultural influences. People who live according to a postmodern philos- ophy acknowledge that reality is constantly changing and scientific investigations cannot provide one grand theory or correct view of an absolute Truth that can guide human behav- ior, relationships, and life. Human knowledge is thought instead to be shaped by multiple factors, with storytelling and narrative analysis being viewed as core components of knowl- edge development.

Care-Based Versus Justice-Based Reasoning A care approach to moral reasoning is often associated with a feminine way of thinking, and a cure approach is usually associated with a masculine, Enlightenment-era way of think- ing. In 1981, Lawrence Kohlberg, a psychol- ogist, reported his landmark research about

ETHICAL REFLEC TION

Identify examples of mechanistic practices in health care today.

During the 18th century, David Hume (1711–1776) proposed an important idea about moral reasoning. Hume argued there is a distinction between facts and values when moral reasoning is practiced. This fact/value distinction has also been called the is/ought gap. A skeptic, Hume suggested a person should not acknowledge a fact and then make a value judgment based on that fact because one logically cannot take a fact of what is and then determine an ethical judgment of what ought to be. If Hume’s position is accepted as valid, people should not make assumptions such as the following: (1) if all dogs have fleas (assuming this is a known fact) and (2) Sara is a dog (a fact), then (3) Sara ought not to be al- lowed to sleep on the sofa because having fleas on the sofa is a bad thing (a value statement).

12 Chapter 1 Introduction to Ethics

Antonio Thomas

moral reasoning based on 84 boys he had stud- ied for more than 20 years. Based on the work of Jean Piaget, Kohlberg defined six stages of moral development ranging from childhood to adulthood. Interestingly, Kohlberg did not include any women in his research, but he ex- pected to use his six-stage scale to measure moral development in both males and females.

When the scale was applied to women, they seemed to score at only the third stage of the sequence, a stage in which Kohlberg de- scribed morality in terms of interpersonal rela- tionships and helping others. Kohlberg viewed this third stage of development as somewhat deficient in regard to mature moral reasoning. Because of Kohlberg’s exclusion of females in his research and his negative view of this third stage, Carol Gilligan, one of Kohlberg’s associ- ates, raised the concern of gender bias. Gilli- gan, in turn, published an influential book in 1982, In a Different Voice, in which she argued that women’s moral reasoning is different but not deficient. The distinction usually made between moral reasoning as it is suggested by Kohlberg and Gilligan is that Kohlberg’s is a male-oriented ethic of justice and Gilligan’s is a more feminine ethic of care (covered later in this chapter).

Learning from History Often, it is only in hindsight that people are able to analyze a historical era in which there is a converging of norms and beliefs held in high esteem or valued by large groups within a society. Like the overlapping approaches used by some ethical objectivists, the influences of historical eras also build upon each other and often are hard to separate. Christians still base much of their ethical reasoning on the phil- osophy generated during the Middle Ages. At the same time, it is evident that individualistic ways of thinking that were popular during the Enlightenment remain popular today in West- ern societies because autonomy (self-direction) is so highly valued. Because varied histor- ical influences have affected moral reasoning,

there is a pattern of rich and interesting values, perspectives, and practices evident in today’s globally connected world.

▸ Ethical Theories and Approaches

Normative ethical theories and approaches function as moral guides to answer the ques- tions “What ought I do or not do?” and “How should I be?” A theory can provide individuals with guidance in moral thinking and reason- ing as well as justification for moral actions. The following theories and approaches are not all inclusive, but they represent some of the most popular.

Western Ethics Religion and Western Ethics A discussion of Western ethics systems likely prompts some people to want to include monotheistic Western religious traditions, such as Judaism, Christianity, and Islam. Mo- rality in each of these religions is based on sacred texts—the first five books of the Old Testament of the Bible (Torah) in Judaism, the Old and especially the New Testament of the Bible in Christianity, and the Qur’an (Koran) given by Allah to the Prophet Muhammad in Islam. Pleasing God, according to sacred laws and traditions, dominates prescribed moral behavior in each of these religious groups. In addition to sacred scripture, there are histor- ical figures who heavily influenced religious ethical systems, for example, the Catholic saints Augustine and Aquinas and the medie- val Jewish philosopher Maimonides.

The politically, socially, and intellectually focused ancient Greeks provided the most de- veloped system of ethics in the Western world until the Middle Ages when religious doctrine became the primary focus. Then, as people moved into the Enlightenment period and

Ethical Theories and Approaches 13

Antonio Thomas

again viewed human intellect as being trust- worthy for providing moral guidance, secular systems of ethics overtook religious systems. Today, among many people, the lines between sacred and secular ethics are blurred. It is a key point of understanding ethics, however, that in a post-Enlightenment world, ethics falls under the umbrella of philosophy rather than religion. The ethical systems discussed in this chapter are those considered to be classic theories and approaches in Western ethical philosophy, though some of them do stem from religious traditions.

well. If one needs the services of a knife, it is probably safe to assume a knife that exhibits excellence in cutting would be the type of knife one would want to use; most people want to use a knife that accomplishes its purpose in the best way possible.

For humans, virtue ethics addresses the question “What sort of person must I be to be an excellent person?” rather than “What is my duty?” Virtues for humans are habitual, though not routinized, excellent traits inten- tionally developed throughout one’s life. An- nas (2011) outlined a description of how to spot virtue. In regard to a person, a virtue is a “lasting feature” (loc. 138); it is “active” and de- velops “through selective response to circum- stances” (loc. 142). Virtue “persists through challenges and difficulties, and it is strength- ened or weakened by . . . responses” (loc. 142). “A virtue is also a reliable disposition . . . it is no accident” (loc. 146).

A person of virtue, consistent with Aris- totle’s way of thinking, is a person who is an excellent friend to other people, an excellent thinker, and an excellent citizen of a commun- ity. Aristotle’s (trans. 2002) approach to virtue ethics is grounded in two categories of excel- lence: intellectual virtues and character, or moral, virtues. According to Aristotle, “the in- tellectual sort [of virtue] mostly . . . comes into existence and increases as a result of teach- ing (which is why it requires experience and time), whereas excellence of character results from habituation” (p. 111). The habituation Aristotle had in mind is an intelligent, mind- ful attention to excellent habits rather than a thoughtless routinization of behaviors.

Though Aristotle (trans. 2002) divided virtues into two kinds—those of the intellect and those of character—the two categories of virtues cannot be distinctly separated. Aristotle proposed “it is not possible to possess excel- lence in the primary sense [that is, having excel- lence of character] without wisdom, nor to be wise without excellence of character” (p. 189).

Aristotle realized good things taken to an extreme could become bad. He therefore

FOCUS FOR DEBATE

Does a person need to be religious to be moral? For example, can an atheist be moral? Can or should ethics be separated from religion? Defend your positions.

Virtue Ethics Watch your thoughts; they become words. Watch your words; they become actions. Watch your actions; they become habits. Watch your habits; they become character. Watch your character; it becomes your destiny.

—Various attributions but author unknown

Rather than centering on what is right or wrong in terms of one’s duties or the consequences of one’s actions, the excellence of one’s character and considerations of what sort of person one wants or ought to be are emphasized in virtue ethics. Since the time of Plato and Aristotle, virtues, called arête in Greek, have referred to excellences in regard to people or objects being the best they can be in accordance with their purpose. As the ancient Greeks originally con- ceived the concept, even an inanimate object can have virtue. For example, the purpose of a knife is to cut, so arête in regard to a knife means the knife has a sharp edge and cuts very

14 Chapter 1 Introduction to Ethics

Antonio Thomas
Antonio Thomas

proposed that there is a Golden Mean in ways of being. Most virtues are considered to exist as a moderate way of being between two kinds of vices or faults: the extremes of excess at one end and deficiency at the other. For in- stance, Aristotle named courage as a virtue, but the extremes of rashness at one end of a continuum and cowardice at the other end of the same continuum are its related vices. An- other example is the virtue of truthfulness, which is the mean between boastfulness and self-deprecation. The mean for each virtue is unique for each type of virtue and situation; in other words, the mean is not a mathematical average.

Other examples of virtues include benev- olence, compassion, fidelity, generosity, and patience. Plato designated the four virtues of prudence (wisdom), fortitude (courage), tem- perance (moderation), and justice as cardinal virtues, meaning all other virtues hinge on these four primary virtues. Prudence corre- sponds to Plato’s idea of the Faculty of Reason, fortitude corresponds to the Faculty of Spirit, and temperance corresponds to the Faculty of Appetite; the virtue of justice is an umbrella virtue encompassing and tying together the other three.

The ancient Greeks are most frequently associated with virtue ethics, but other philos- ophers and ethicists have also proposed views about virtues. The Scottish philosopher David Hume (1711–1776) and the German philos- opher Friedrich Nietzsche (1844–1900) each proposed an interesting philosophy of virtue ethics that differs from the philosophies of the Greeks, though Hume’s and Nietzsche’s are not the only other approaches to virtue ethics.

Hume, whose approach is used by some feminist philosophers, believed virtues flow from a natural human tendency to be sym- pathetic or benevolent toward other people. Virtues are human character traits admired by most people and judged to be generally pleas- ing as well as being useful to other people, use- ful to oneself, or useful to both other people and to oneself. Because of Hume’s focus on the

usefulness of virtues, his approach to ethics is also associated with utilitarianism, which is discussed later in this chapter. Hume’s phil- osophy of ethics is based on emotion as the primary human motivator for admirable behavior rather than motivation by reason. However, Hume did not propose that ethics is based merely on personal opinion. Virtu- ous behavior is validated by the consensus of members of communities according to what is useful for a community’s well-being.

A different and more radical view of virtue ethics is based on the philosophy of Nietzsche. Rather than viewing people as caring, sym- pathetic beings, Nietzsche proposed the best character for people to cultivate is grounded in a will to power. Nietzsche believed the will to power rightly should motivate people to achieve dominance in the world. Nietzsche praised strength as virtuous, whereas so-called feminine virtues, such as caring and kindness, he considered to be signs of weakness. This means, according to Nietzsche, that virtue is consistent with hierarchical power or power over other people, which makes the Christian virtue of humility a vice. It is believed another German, Adolf Hitler, adopted the philosophy of Nietzsche as his worldview. Though Ni- etzsche is a well-known and important person in the history of philosophy, his approach to virtue ethics has little place in nursing ethics.

ETHICAL REFLEC TION

Partner with a colleague, and list several real-life examples related to each line of the quotation at the beginning of the “Virtue Ethics” section.

Although virtue ethics is popular again today, over the years interest in this ethical ap- proach experienced a significant decline among Western philosophers and nurses (MacIntyre, 1984; Tschudin, 2003). Many Western philos- ophers lost interest in the virtues when they became entrenched in the schools of thought

Ethical Theories and Approaches 15

popularized during the Enlightenment era that emphasized individualism and autonomy (MacIntyre, 1984).

Over time, nurses concluded it was not helpful professionally to follow the tradition of Florence Nightingale because her view of vir- tues in nursing includes a virtue of obedience (Sellman, 1997). However, Nightingale’s valu- ing of obedience needs to be viewed within the context of the time in which she lived. Also, Nightingale’s liberal education in Greek phil- osophy may have influenced her use of the virtue of obedience to reflect her belief in the value of practical wisdom as conceived by Ar- istotle (LeVasseur, 1998; Sellman, 1997). In connecting obedience to practical wisdom, some nurses now understand Nightingale’s conception as approaching something akin to intelligent obedience rather than a subservient allegiance of nurses to physicians.

Greeks. In fact, natural law theory is complex, and attempting to present its essence would be to oversimplify the theory (Buckle, 1993). Even the terms nature and natural are ambiguous.

Aristotle’s conception of natural law the- ory is a universal type of justice grounded in the laws of nature rather than human law. Most modern versions of natural law theory have their basis in the religious philosophy of Saint Thomas Aquinas. Because he believed God created everything and implanted all things with purpose and order in concert with His will, Aquinas deduced that people could investigate nature and find God’s expectations there. Consequently, people who use natural law theory contend the rightness of actions is self-evident because morality is inherently implanted in the order of nature and not re- vealed through customs and preferences. To- day, natural law theory is the basis for religious prohibitions against acts some people consider unnatural, such as homosexuality and the use of birth control.

Though natural law theory and divine command theory sometimes are confused, they have a fundamental difference. According to divine command theory, an action is good because a divine being, such as God, com- mands it, whereas with natural law theory, a divine being commands an action because it is moral irrespective of said divine being.

Deontology Deontology, literally the study of duty, is an approach to ethics focused on duties and rules. The most influential philosopher associated with the deontological way of thinking was Im- manuel Kant (1724–1804). Kant defined a per- son as a rational, autonomous (self-directed) being with the ability to know universal, ob- jective moral laws and the freedom to decide to act morally. Kantian deontology prescribes that each rational being is ethically bound to act only from a sense of duty; when deciding how to act, the consequences of one’s actions are considered to be irrelevant.

FOCUS FOR DEBATE

Can a limited set of virtues be identified as essential for members of the nursing profession? Which virtues are most important in nursing? Search the American Nurses Association’s (2015) Code of Ethics for Nurses with Interpretive Statements, and identify a list of virtues discussed directly or indirectly in the document. Remember, virtues are excellent qualities of character, such as being compassionate, courageous, truthful, and humble.

Natural Law Theory There is in fact a true law—namely, right reason— which is in accordance with nature, applies to all men, and is unchangeable and eternal. By its commands this law summons men to the performance of their duties; by its prohibitions it restrains them from doing wrong.

—Marcus Tullius Cicero, The Republic (51 BCE)

Natural law theory has a long and varied hist- ory, dating back to the work of the ancient

16 Chapter 1 Introduction to Ethics

Antonio Thomas
Antonio Thomas
Antonio Thomas

According to Kant, it is only through du- tiful actions that people can be moral. Even when individuals do not want to act from duty, Kant believed they are ethically bound to do so. In fact, Kant asserted that having one’s actions motivated by duty is superior to acting from a motivation of love. Because rational choice is within one’s control as compared to one’s tenuous control over personal emotions, Kant was convinced that only reason, not emotion, is sufficient to lead a person to moral actions.

Kant believed people are ends in them- selves and should be treated accordingly. Each autonomous, self-directed person has dignity and is due respect, and one should never act in ways that involve using other people as a means to one’s personal ends. In fact, when people use others as a means to an end, even if they believe they are attempting to reach ethical goals, Kant believed people could be harmed. An example of this today is the failure to obtain informed consent from a research participant even when the researcher stead- fastly believes the research will be beneficial to the participant.

for instance, if I want to become a nurse, then I have to study during nursing school.

Where moral actions are concerned, Kant believed duties and laws are absolute and un- conditional. Kant proposed that people ought to follow a universal, unconditional frame- work of maxims, or rules, as a guide to know the rightness of actions and one’s moral duties. He called these absolute and unconditional duties categorical imperatives. When de- ciding about matters of ethics, one should act according to a categorical imperative and ask the question “If I perform this action, could I will that it should become a universal law for everyone to act in the same way?” No action can ever be judged as right, according to Kant, if it is not reasonable that the action could be used as a binding, ethical law for all people. For example, Kant’s ethics imposes the cate- gorical imperative that one should never tell a lie because a person cannot rationally wish that all people should be able to pick and choose when they have permission not to be truthful. Another example of a categorical im- perative is that suicide is never acceptable. A person, when committing suicide, should not rationally wish that all people should feel free to commit suicide, or the world would become chaotic.

Consequentialism Consequentialists, as distinguished from de- ontologists, do consider consequences to be an important indication of the moral value of one’s actions. Utilitarianism is the most well-known consequentialist theory of ethics. Utilitarianism means actions are judged by their utility; that is, they are evaluated accord- ing to the usefulness of their consequences. When people use the theory of utilitarianism as the basis for ethical behavior, they attempt to promote the greatest good (happiness or plea- sure) and to produce the least amount of harm (unhappiness, suffering, or pain) possible in a situation. In other words, utilitarians believe it is useful to society to achieve the greatest good

ETHICAL REFLEC TION

Review the American Nurses Association’s (2015) Code of Ethics for Nurses with Interpretive Statements. Is the code based primarily on a deontological approach to nursing? Is it based primarily on a virtue ethics approach? Both? Discuss specific examples in the code that support your answer.

Kant identified rules to guide people in thinking about their obligations. He drew a distinction between two types of duties or ob- ligations: the hypothetical imperative and the categorical imperative. Hypothetical impera- tives are optional duties, or rules, people ought to observe or follow if certain ends are to be achieved. Hypothetical imperatives are some- times called if–then imperatives, which means they involve conditional, or optional, actions;

Ethical Theories and Approaches 17

Antonio Thomas
Antonio Thomas
Antonio Thomas

for the greatest number of people who may be affected by an action.

British philosopher Jeremy Bentham (1748–1832), a contemporary and associate of Florence Nightingale’s father, was an early promoter of the principle of utilitarianism. During Bentham’s life, British society func- tioned according to aristocratic privilege. Poor people were mistreated by people in the upper classes and given no choice other than to work long hours in deplorable conditions. Bentham tried to develop a theory to achieve a fair dis- tribution of pleasure among all British citi- zens. He went so far as to develop a systematic decision-making method using mathematical calculations. Bentham’s method was designed to determine ways to allocate pleasure and di- minish pain by using the measures of intensity and duration. This approach to utilitarianism has been criticized because Bentham equated all types of pleasure as being equal.

John Stuart Mill (1806–1873), another Englishman, challenged Bentham’s views. Mill clearly pointed out that particular expe- riences of pleasure and happiness do have dif- ferent qualities and different situations do not necessarily produce equal consequences. For example, Mill stated that higher intellectual pleasures may be differentiated from lower physical pleasures. The higher pleasures, such as enjoying a work of art or a scholarly book, are considered better because only human beings, not other animals, possess the mental faculties to enjoy this higher level of happiness.

According to Mill, happiness and pleasure are measured by quality and not quantity (dur- ation or intensity). In making these distinctions between higher and lower levels of happiness and pleasure, Mill’s philosophy is focused more on ethics than politics and social utility.

Mill believed communities usually agree about what is good and things that best promote the well-being of most people. An example of an application of Mill’s utilitarianism is the use of mandatory vaccination laws— individual liberties are limited so the larger society is

protected from diseases, and the consequence is that people are happier because they are free of diseases. People who use Mill’s form of util- itarian theory often can use widely supported traditions to guide them in deciding about rules and behaviors that probably will produce the best consequences for the most people, such as the maxim that stealing is wrong. Through experience, humans generally have identified behaviors that produce the most happiness or unhappiness for society as a whole.

Over time, people who subscribe to a theory of utilitarianism have divided them- selves into subgroups. Two main types of utilitarianism have developed over the years: rule utilitarianism and act utilitarianism. Rule utilitarians believe there are certain rules— such as do not kill, do not break promises, and do not lie—that, when followed, usually create the best consequences for the most people. Based on this definition, someone might ask, “What is the difference between rule utilitar- ianism and deontology?” The answer is that all utilitarian theories of ethics, whether based on rules or individual actions, are predicated on achieving good consequences for the most people. Deontologists, on the other hand, make decisions based on right duty rather than on right consequences.

Act utilitarians believe each action in a particular circumstance should be chosen based on its likely good consequences rather than on following an inherently moral, univer- sal rule. The utility of each action in achieving the most happiness is the aim of act utilitari- ans, whereas rule utilitarians are willing to ac- cept causing more suffering than happiness in a particular situation to avoid violating a gen- eralized rule. For example, promise breaking is permitted according to act utilitarianism if the consequences of the action (breaking a prom- ise) cause more happiness than suffering in a particular situation. In the same situation, a rule utilitarian would say a promise should be upheld because, in most cases, promise keep- ing causes more happiness than suffering.

18 Chapter 1 Introduction to Ethics

Antonio Thomas
Antonio Thomas
Antonio Thomas

Prima Facie Rights The term prima facie means on one’s first impression, or on the face of things; that is, something is accepted as correct until or un- less it is shown to be otherwise. For example, promise keeping is considered an accepted ethical rule. However, if a nurse promised her spouse she would be on time for dinner but, as she was about to leave the hospital, she was told the nurse replacing her would be late for work, it is expected that the nurse would break her promise to be on time for dinner so she could attend to her patients until the other nurse arrives.

Prima facie ethics is associated with the philosopher Sir William David Ross (1877– 1971) and his 1930 book, The Right and the Good. Ross is called an ethical intuitionist because he believed certain things are intrin- sically good and self-evidently true. Ross un- derstood ethics to suggest that certain acts are prima facie good—keeping promises, repaying kindnesses, helping others, and preventing dis- tress. However, when these prima facie good actions conflict, one has to decide where one’s actual duty lies. Ross conceded that human knowledge is imperfect and the best people can expect to do is use their imperfect knowl- edge to assess the context of each situation and make an informed judgment, although they are uncertain about the correctness of their choices. Ross’s approach to ethics has quite a bit of relevance for nurses who frequently must make quick determinations of how to priori- tize important actions that can cause distress for one person while helping another.

Principlism Principles are rule-based criteria for conduct that naturally flow from the identification of ob- ligations and duties. Consequently, the theory of deontology is a forerunner of the approach of principlism. Principles usually are reducible to concepts or statements, such as the principle of beneficence or respect for a person’s auton- omy. Often, principles are used as the basis for ethically related documents, such as documents reflecting positions about human rights. Exam- ples of principle-based documents include the American Hospital Association’s (2003) The Patient Care Partnership and the Universal Dec- laration of Human Rights, formulated in 1948 by the United Nations. Principlism is discussed in more detail in Chapter 2.

Casuistry Casuistry is an approach to ethics grounded in Judeo-Christian history. When people use casuistry, they make decisions inductively based on individual cases. The analysis and evaluation of strongly similar or outstanding cases (i.e., paradigm cases) provides guidance in ethical decision making. A paradigm case is a benchmark, or landmark, case against which decisions in similar cases are compared and that provides guidance in similar cases.

When people use casuistry, their ethical de- cision making begins as an inductive, bottom- up approach in considering the details of spe- cific cases rather than beginning from the top down and applying absolute rules and prin- ciples. Long ago, Jewish people often tried to sort out the relevance of sacred laws in specific situations in ways that were practical and case based rather than absolute and inflexibly rule based. In Catholic history, the practice of people individually confessing their sins to priests to receive absolution reflects the use of casuistry. Based on the confessor’s specific case (i.e., the circumstances surrounding the occasion of sin- ning) a person receives from the priest a per- sonal penance that is required for absolution.

LEGAL PERSPEC TIVE

Conduct a search about the theory of utilitarianism; infectious diseases, such as Mycobacterium tuberculosis; and the law. Discuss your findings.

Ethical Theories and Approaches 19

Antonio Thomas
Antonio Thomas

LEGAL PERSPEC TIVE

Search the internet for information on the 1986 Florida legal case Corbett v. D’Alessandro. How is the final legal decision in this case related to the ethical approach of casuistry and the later case of Schindler v. Schiavo?

ETHICAL REFLEC TION

Discuss several specific stories in books and movies that have affected your moral views or made an impact on your way of thinking ethically. What are the themes and symbols used in the stories?

BOX 1-1 Narrative Learning

1. Divide into small groups. 2. Choose a children’s book from the list

below or another similar type of short children’s book.

3. Read the book, and as a group, apply the book’s message(s) to nursing practice.

4. Share your application with other groups. You might want to develop a creative display or activity to help illustrate your points.

Books:

■ The Little Engine That Could (Original Classic Edition)

■ The Juice Box Bully ■ Have You Filled a Bucket Today? ■ Lacey Walker Nonstop Talker ■ The Fall of Freddie the Leaf ■ What If Everybody Did That? ■ Thanks for the Feedback, I Think ■ Stone Soup ■ Old Turtle ■ The Three Questions

Today, casuistry is often the method used by healthcare ethics committees to analyze the ethical issues surrounding specific patient cases. The Four Topics Method of ethical deci- sion making is based on a casuistry approach (see Chapter 2).

Narrative Ethics Because it is a story-based approach, narra- tive ethics has similarities to casuistry. Also, according to one of the foremost modern-day virtue ethicists, Alasdair MacIntyre, narrative thinking and virtue ethics are closely con- nected. Both narrative ethics and virtue ethics are firmly embedded in human relationships. MacIntyre (1984) proposed that a human is “essentially a story-telling animal”; a person is “a teller of stories that aspire to truth” (p. 216). Narratives, such as novels and literary stor- ies, change us in remarkable ways (Murray, 1997). From childhood, most people obtain moral education about character development from stories, such as fairy tales and fables (see BOX 1-1). When using a narrative approach to ethics, nurses are open to learning from a storied, nuanced view of life; that is, they are sensitive to how personal and community

stories evolve, are constructed, and can be changed. Narratives are stories being lived, read, watched, heard, discussed, analyzed, or compared.

Narratives are context or situation bound. For people to decide what they should do in particular circumstances, they may first iden- tify how their moral character and actions fit within the greater stories of their culture. Peo- ple are situated within their personal life nar- ratives, and their stories intersect with and are interwoven into the narratives of other people with whom they interact. Nurses who use nar- rative ethics are aware that there is more to a patient’s story than is known or discussed among healthcare providers. People are not solitary creatures, and as they interact with other people and their environment, they must make choices about what they believe and how they will act. They create their own stories.

20 Chapter 1 Introduction to Ethics

Antonio Thomas
Antonio Thomas

When using a narrative approach to eth- ics, nurses realize that individual human stories are being constantly constructed in relation to the stories of a greater community of people. In nursing, a good example of narrative ethics involves nurses with sensitive awareness en- countering each patient’s unfolding life story in everyday practice. These nurses know that their actions while caring for patients influence the unfolding stories of those patients in both large and small ways. A “narrative approach to bioethics focuses on the patients themselves: these are the moral agents who enact choices” (Charon & Montello, 2002, p. xi). In narrative ethics, patients’ and nurses’ stories matter; how- ever, no one story should be accepted without critical reflection.

Critical Theory Critical theory, sometimes referred to as critical social theory, is a broad term identi- fying theories and worldviews addressing the domination perpetrated by specific powerful groups of people and the resulting oppression of other specific groups of people. There are a number of critical theories included under one broad heading. In citing the group of German philosophers who originated the concept of critical theory, Bohman (2005) stated that crit- ical theories can be distinguished from tradi- tional theories because the purpose of critical theories is to promote human emancipation. Specifically, the purpose of using critical the- ories is “to liberate human beings from the cir- cumstances that enslave them” (Horkheimer, as cited in Bohman, 2005, para. 1). According to Brookfield (2005), there are three core as- sumptions in critical theory that explain how the world is organized:

1. That apparently open, Western de- mocracies are actually highly un- equal societies in which economic inequity, racism, and class discrim- ination are empirical realities

2. That the way this state of affairs is reproduced and seems to be normal,

natural, and inevitable (thereby heading off potential challenges to the system) is through the dissemi- nation of dominant ideology

3. That critical theory attempts to un- derstand this state of affairs as a nec- essary prelude to changing it (p. viii)

One critical theory widely used by nurses is a feminist approach to ethics. Under this broad feminist approach is the ethic of care originating from the Gilligan–Kohlberg de- bate discussed earlier in this chapter.

Feminist Ethics According to Tong (1997), “to a greater or lesser degree, all feminist approaches to ethics are filtered through the lens of gender” (p. 37). This means feminist ethics is specifically fo- cused on evaluating ethically related situations in terms of how these situations affect women. The concept of feminist ethics tends to have a political connotation and addresses the pat- terns of women’s oppression as this oppression is perpetrated by dominant social groups, es- pecially socially powerful men.

Ethic of Care. An ethic of care is grounded in the moral experiences of women and feminist ethics. It evolved into an approach to ethics that gained popularity because of the Gilligan– Kohlberg debate about the differences in women’s and men’s approaches to moral rea- soning. Rather than being based on duty, fair- ness, impartiality, or objective principles (ethic of justice) similar to the values popularized during the Enlightenment era, an ethic of care emphasizes the importance of tradition- ally feminine traits, such as love, compassion, sympathy, and concern about human well- being. The natural partiality in how people care more about some people than others is acknowledged as acceptable in an ethic of care. Also, the role of emotions in moral reasoning and behavior is accepted as a necessary and natural complement to rational thinking. This

Ethical Theories and Approaches 21

Antonio Thomas
Antonio Thomas

position distinguishes an ethic of care from an ethic of justice and duty-based ethics that em- phasize the preeminence of reason and min- imize the importance of emotion in guiding moral reasoning and the moral nature of one’s relationships.

focused on individuals’ innate but unrecog- nized perfection and the ability to transcend earthly suffering and dissatisfaction through one’s own abilities. Therefore, Eastern ethics is not imposed from outside of a person but in- stead is imposed from within oneself. Eastern ethics tends to be a discipline of training the mind and includes the concept that unethical behavior leads to karmic results (i.e., the qual- ity of one’s actions results in fair consequences according to the universal law of cause and ef- fect). The four largest Eastern ethical systems, which contain myriad variations and now ex- ist in a number of countries, are Indian ethics (Hinduism and Buddhism) and Chinese ethics (Taoism and Confucianism).

Indian Ethics Hinduism. Hinduism is an ancient ethical sys- tem. It originated with writings called the Vedas (ca. 2000 to 1000 BCE), which include magical, religious, and philosophical teachings, and existed long before the well-known ethical phil- osophy of the ancient Greeks. The main em- phasis in Hindu ethics is cosmic unity. Because of reincarnation, people are stuck in maya, an illusory, everyday, impermanent experience. The quality of one’s past actions, karma, influ- ences one’s present existence and future incar- nations or rebirths. Therefore, people need to improve the goodness of their actions, which will subsequently improve their karma. Liber- ation, moksha, means the soul of each person is no longer reincarnated but becomes one with the desirable cosmic or universal self, atman, and the absolute reality of Brahman.

Buddhism. The historical Buddha, Siddhartha Gautama (6th century BCE) was a Hindu prince. Because Siddhartha’s father wanted to prevent the fulfillment of a prophecy that Siddhartha might become a spiritual teacher, he tried to shield his son from the world outside his palace. However, Siddhartha left the confinement of his palace and saw in his fellow human beings the suffering associated with sickness, old age, and

FOCUS FOR DEBATE

Is caring a virtue?

ETHICAL REFLEC TION

Review the theories developed by nurse theorists. Which ones are based on an ethic of care?

■ Compare and contrast these theories. ■ Discuss whether the theories are ethics

theories. Defend your rationale.

Eastern Ethics Ethics in Asian societies has similarities to and important differences from Western ethics. In both cultures, ethics often is intertwined with spiritual or religious thinking, but ethics in Eastern societies is usually indistinguish- able from general Eastern philosophies. Both Eastern and Western philosophies of ethics examine human nature and what is needed for people to move toward well-being. However, some of the differences in the two cultural sys- tems are quite interesting and distinct.

Whereas the goal of Western ethics is generally for people to understand themselves personally, the goal of Eastern ethics is often to understand universal interconnections, be liberated from the self, or understand that people really do not consist of a self at all (Ze- uschner, 2001). Ethics viewed from Christian or other theological perspectives tends to be based on a belief in human flaws that require an intermediary (God) to transcend these im- perfections. Eastern ethical systems are usually

22 Chapter 1 Introduction to Ethics

Antonio Thomas
Antonio Thomas

death. He decided to devote his life to under- standing and ending suffering.

In Buddhism, there is no creator God. The Buddha’s core teachings, the teachings that all Buddhist sects profess, are called the Four No- ble Truths. The First Noble Truth is that un- satisfactoriness or suffering (dukkha) exists as a part of all forms of existence. This suffering is different from the common Western no- tion of physical or mental misery; suffering in a Buddhist sense, for example, arises when people are ego centered and cling to their impermanent existence and impermanent things. Suffering is emphasized in Buddhism not to suggest a negative outlook toward life but instead as a realistic assessment of the hu- man condition. The Second and Third Noble Truths suggest that the cause of suffering is attachment (clinging or craving) to imperma- nent things and suffering can be transcended (enlightenment). The Fourth Noble Truth contains the path for transforming suffering into enlightenment or liberation. This path is called the Eightfold Path, and it is composed of eight right practices: Right View, Right Think- ing, Right Mindfulness, Right Speech, Right Action, Right Diligence, Right Concentration, and Right Livelihood.

Because of the central place of virtues in Buddhist philosophy, one interpretation of Buddhist ethics is to identify Buddhism as an ethic of virtue. There are four virtues singled out by Buddhists as being immeasurable be- cause, when these virtues are cultivated, it is believed they will grow in a way that can en- compass and transform the whole world. The Four Immeasurable Virtues are compassion (karuna), loving-kindness (metta), sympa- thetic joy (mudita), and equanimity (upekkha).

Chinese Ethics The two most influential Chinese ethical sys- tems were developed between 600 and 200 BCE during a time of social chaos in China. The two systems are Taoism and Confucianism.

Taoism. The beginning of Taoism is attributed to Lao-Tzu (ca. 571 BCE), who wrote the Taoist guide to life, the Tao Te Ching. The word tao is translated to English as way or path, meaning the natural order or harmony of all things. Like Buddhists, Taoists do not believe in a creator God. Instead, Taoists have a very simple per- spective toward reality—the underlying pur- pose of humans and the underlying purpose of nature cannot be separated. Based on the cy- clic nature of life observed by ancient Chinese farmers, Taoist philosophy underscores the flux and balance of nature through yin (dark) and yang (light) elements. Living well or ethic- ally is living authentically, simply, and unself- ishly in harmony and oneness with nature.

Confucianism. K’ung Fu-tzu (551–479 BCE), who was later called Confucius by Christians visiting China, originated the Confucian eth- ical system. The teachings of Confucian ethics are generally contained in the moral maxims and sayings attributed to K’ung Fu-tzu along with the later writings of his followers. Confu- cian ethics is described through the concepts of li and yi (Zeuschner, 2001). Li provides guidance in regard to social order and how hu- mans should relate to one another, including

ETHICAL REFLEC TION

The Buddhist Avatamsaka Sutra contains a story about how all perceiving, thinking beings are connected, similar to a universal community. The story is about the heavenly net of the god Indra. “In the heaven of Indra, there is said to be a network of pearls, so arranged that if you look at one you see all the others reflected in it. In the same way each object in the world is not merely itself but involves every other object and in fact is everything else. In every particle of dust there is present Buddhas without number” (Japanese Buddhism by Sir Charles Eliot © 2000, Psychology Press [Taylor & Francis]).

How is the story about the net of Indra related to ethics?

Ethical Theories and Approaches 23

Antonio Thomas
Antonio Thomas
Antonio Thomas
Antonio Thomas
Antonio Thomas
Antonio Thomas

rules of etiquette, such as proper greetings and social rituals. Yi emphasizes the importance of one’s motivations toward achieving rightness rather than emphasizing consequences. Sin- cerity, teamwork, and balance are critically im- portant to ethical behavior. The primary virtue

of Confucian ethics is jen, which is translated to English as benevolence or human goodness. Overall, Confucianism is a communitarian ethical system in which social goals, the good of society, and the importance of human rela- tionships are valued.

KEY POINTS

■ Ethics refers to the analysis of matters of right and wrong, whereas morals refer to actual beliefs and behaviors. However, the terms often are used interchangeably.

■ Values refer to judgments about what one believes is good or makes something desirable. Values influence how a person’s character develops and people think and subsequently behave.

■ Normative ethics is an attempt to decide or prescribe values, behaviors, and ways of being that are right or wrong, good or bad, admirable or dishonorable. When doing normative ethics, people ask questions such as “How ought humans behave?” “What should I do?” and “What sort of person should I be?”

■ Ethical thinking, valuing, and reasoning generally fall along a continuum between ethical relativism and ethical objectivism.

■ The study of values and ways of moral reasoning throughout history can be useful for people living in the 21st century. Specific values and ways of moral reasoning tend to overlap and converge over time.

■ Virtue ethics emphasizes the excellence of one’s character. ■ Deontological ethics emphasizes one’s duty rather than the consequences of one’s actions. ■ Utilitarian ethics emphasizes the consequences of one’s actions in regard to achieving the most

good for the most people affected by a rule or action. ■ Eastern philosophies and systems of ethics often are inseparable.

References American Hospital Association. (2003). The patient care

partnership: Understanding expectations, rights, and responsibilities. Chicago, IL: Author.

American Nurses Association. (2015). Code of ethics for nurses with interpretive statements. Silver Spring, MD: Author.

Annas, J. (2011). Intelligent virtue [Kindle version]. New York, NY: Oxford University Press.

Aristotle. (2002). Nichomachean ethics (C. Rowe, Trans.). Oxford, UK: Oxford University Press.

Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.). New York, NY: Oxford University Press.

Billington, R. (2003). Living philosophy: An introduction to moral thought (3rd ed.). London, UK: Routledge.

Bohman, J. (2005). Critical theory. Retrieved from http:// plato.stanford.edu/archives/spr2005/entries/critical -theory/

Brannigan, M. C., & Boss, J. A. (2001). Healthcare ethics in a diverse society. Mountain View, CA: Mayfield.

Brookfield, S. D. (2005). The power of critical theory: Liberating adult learning and teaching. San Francisco, CA: Jossey-Bass.

Buckle, S. (1993). Natural law. In P. Singer (Ed.), A companion to ethics (pp. 161–174). Malden, MA: Blackwell.

Charon, R., & Montello, M. (2002). Introduction: The practice of narrative ethics. In R. Charon & M. Montello (Eds.), Stories matter (pp. ix–xii). New York, NY: Routledge.

Donahue, M. P. (1996). Nursing the finest art: An illustrated history (2nd ed.). St. Louis, MO: Mosby.

Gert, B., Culver, C. M., & Clouser, K. D. (2006). Bioethics: A systematic approach (2nd ed.). New York, NY: Oxford University Press.

Gilligan, C. (1982). In a different voice: Psychological theory and women’s development. Cambridge, MA: Harvard University Press.

24 Chapter 1 Introduction to Ethics

Antonio Thomas
Antonio Thomas

Hope, T. (2004). Medical ethics: A very short introduction. New York, NY: Oxford University Press.

Kohlberg, L. (1981). The philosophy of moral development moral stages and the idea of justice. San Francisco: Harper & Row.

LeVasseur, J. (1998). Plato, Nightingale, and contemporary nursing. Image: Journal of Nursing Scholarship, 30(3), 281–285.

MacIntyre, A. (1984). After virtue: A study of moral theory (2nd ed.). Notre Dame, IN: University of Notre Dame Press.

Murray, T. H. (1997). What do we mean by “narrative ethics”? Medical Humanities Review, 11(2), 44–57.

Pence, G. (2000). A dictionary of common philosophical terms. New York, NY: McGraw-Hill.

Ross, W. D. (2002). The right and the good. Oxford, UK: Oxford University Press. (Original work published 1930)

Sellman, D. (1997). The virtues in the moral education of nurses: Florence Nightingale revisited. Nursing Ethics, 4(1), 3–11.

Tong, R. (1997). Feminist approaches to bioethics: Theoretical reflections and practical applications. Boulder, CO: Westview Press.

Tschudin, V. (Ed.). (2003). Approaches to ethics: Nursing beyond boundaries. Edinburgh, UK: Butterworth- Heinemann.

Zeuschner, R. B. (2001). Classical ethics East and West: Ethics from a comparative perspective. Boston, MA: McGraw-Hill.

25References

© Gajus/iStock/Getty Images

Introduction to Bioethics and Ethical Decision Making Karen L. Rich

The tiniest hair casts a shadow.

—Johann Wolfgang von Goethe, German poet and dramatist (1749–1832)

▸ Introduction to Bioethics

The terms bioethics and healthcare ethics sometimes are used interchangeably. Bioeth- ics, born out of the rapidly expanding technical environment of the 1900s, is a specific domain of ethics focused on moral issues in the field of

health care (see BOX 2-1). During World War II President Franklin D. Roosevelt assembled a committee to improve medical scientists’ co- ordination in addressing the medical needs of the military (Jonsen, 2000). As often happens with wartime research and advancements, the work aimed at addressing military needs also affected civilian sectors, such as the field of medicine.

OBJECTIVES

After reading this chapter, the reader should be able to do the following: 1. Discuss the history of bioethics. 2. Use the approach of ethical principlism in nursing practice. 3. Analyze bioethical issues in practice and from news media. 4. Identify criteria that define an ethical dilemma. 5. Consider how critical thinking is used in ethical nursing practice. 6. Use selected models of reflection and decision making in ethical nursing practice.

27

CHAPTER 2

Between 1945 and 1965, antibi- otic, antihypertensive, antipsychotic, and cancer drugs came into common medical use; surgery entered the heart and the brain; organ transplantation was initiated; and life-sustaining me- chanical devices, the dialysis machine, the pacemaker, and the ventilator were invented (Jonsen, 2000).

However, with these advances also came increased responsibility and distress among healthcare professionals. Patients who would have died in the past began to have a lingering, suffering existence. Healthcare professionals were faced with trying to decide how to allocate newly developed, scarce medical resources. During the 1950s, scientists and medical pro- fessionals began meeting to discuss these con- fusing problems. Eventually healthcare policies and laws were enacted to address questions of who lives, who dies, and who decides. A new field of study was developed called bioethics, a term that first appeared in the literature in 1969 (Jonsen, 1998, 2000, 2005).

▸ Ethical Principles Because shocking information surfaced about serious ethical lapses, such as the heinous World War II Nazi medical experiments in Europe and the unethical Tuskegee research in the United States, societies around the world became particularly conscious of ethical pit- falls in conducting biomedical and behavioral research. In the United States, the National Research Act became law in 1974, and a com- mission was created to outline principles that must be used during research involving hu- man subjects (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). In 1976, to carry out its charge, the commission held an intensive 4-day meeting at the Belmont Con- ference Center at the Smithsonian Institute. Thereafter, discussions continued until 1978, when the commission released its report called the Belmont Report.

The report outlined three basic principles for all human subjects research: respect for per- sons, beneficence, and justice (National Com- mission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). The principle of beneficence, as set forth in the Belmont Report, is the rule to do good. However, the description of beneficence also

BOX 2-1 Early Events in Bioethics

August 19, 1947: The Nuremberg trials of Nazi doctors who conducted heinous medical experiments during World War II began.

April 25, 1953: Watson and Crick published a one-page paper about DNA.

December 23, 1954: The first renal transplant was performed.

March 9, 1960: Chronic hemodialysis was first used.

December 3, 1967: The first heart transplant was done by Dr. Christiaan Barnard.

August 5, 1968: The definition of brain death was developed by an ad hoc committee at Harvard Medical School.

July 26, 1972: Revelations appeared about the unethical Tuskegee syphilis research.

January 22, 1973: The landmark Roe v. Wade case was decided.

April 14, 1975: A comatose Karen Ann Quinlan was brought to Newton Memorial Hospital; she became the basis of a landmark legal case about the removal of life support.

July 25, 1978: Baby Louise Brown was born. She was the first test-tube baby.

Spring 1982: Baby Doe became the basis of a landmark case that resulted in legal and ethical directives about the treatment of impaired neonates.

December 1982: The first artificial heart was implanted into the body of Barney Clark, who lived 112 days after the implant.

April 11, 1983: Newsweek published a story about a mysterious disease called AIDS that was at epidemic levels.

Data from Jonsen, A. R. (2000). A short history of medical ethics. New York, NY: Oxford University Press, pp. 99–114.

28 Chapter 2 Introduction to Bioethics and Ethical Decision Making

RESEARCH NOTE: TUSKEGEE SYPHILIS STUDY

During the late 1920s in the United States, syphilis rates were extremely high in some areas. The private Rosenwald Foundation teamed with the United States Public Health Service (USPHS) to begin efforts to control the disease using the drug neosalvarsan, an arsenic compound. Macon County, Alabama, particularly the town of Tuskegee, was targeted because of its high rate of syphilis, as identified through a survey. However, the Great Depression derailed the plans, and the private foundation withdrew from the work. The USPHS repeated the Rosenwald survey in Macon County and identified a syphilis rate of 22% among African American men in the county and a 62% rate of congenital syphilis cases. The natural history (progression) of syphilis had not been studied yet in the United States, and the surgeon general suggested that 399 African American men with syphilis in Tuskegee should be observed, rather than treated, and compared with a group of 200 African American men who were uninfected. The men were not told about the particular details of their disease. They underwent painful, nontherapeutic spinal taps to provide data about the natural history of syphilis and were told these procedures were treatments for “bad blood.” The men were given free meals, medical treatment for diseases other than their syphilis, and free burials. Even after penicillin was discovered in the 1940s, the men were not offered treatment. In fact, the USPHS researchers arranged to keep the uninformed study participants out of World War II because the men would be tested for syphilis, treated with penicillin, and lost from the study. The unethical research continued for 40 years, from 1932 to 1972. During the 40 years of research, an astonishing number of articles about the study were published in medical journals, and no attempt was made to hide the surreptitious terms of the research. No one intervened to stop the travesty. Finally, a medical reporter learned of the study, and the ethical issues were exposed.

After reading this chapter and researching more information on the internet about the Tuskegee research, especially the contribution of Nurse Evers, answer the following questions:

1. What were the main social issues with ethical implications involved in this study? 2. Which bioethical principles were violated by the Tuskegee study? Explain. 3. How do various ethical approaches relate to the Tuskegee study? (See Chapter 1.) 4. Which procedures are in place today to prevent this type of unethical research?

included the rule now commonly known as the principle of nonmaleficence, that is, to do no harm. The report contained guidelines re- garding how to apply the principles in research through informed consent, the assessment of risks and benefits to research participants, and the selection of research participants.

In 1979, as an outgrowth of the Belmont Report, Beauchamp and Childress published the first edition of their book Principles of Biomed- ical Ethics, which featured four bioethical prin- ciples: autonomy, nonmaleficence, beneficence, and justice. Currently, the book is in its seventh edition published in 2013, and the principle of autonomy is described as respect for autonomy.

Doing ethics based on the use of principles—that is, ethical principlism—does not involve the use of a theory or a formal

decision-making model; rather, ethical princi- ples provide guidelines to make justified moral decisions and evaluate the morality of actions. Ideally, when using the approach of princi- plism, no one principle should automatically be assumed to be superior to the other principles (Beauchamp & Childress, 2013). Each princi- ple is considered to be prima facie binding.

Some people have criticized the use of ethical principlism because they believe it is a top-down approach that does not include al- lowances for the context of individual cases and stories. Critics contend that simply applying principles when making ethical determinations results in a linear way of doing ethics; that is, the fine nuances present in relationship-based situations are not considered adequately. Nev- ertheless, the approach of ethical principlism

Ethical Principles 29

using the four principles outlined by Beau- champ and Childress (2013) has become one of the most popular tools used today for ana- lyzing and resolving bioethical problems.

▸ Autonomy Autonomy is the freedom and ability to act in a self-determined manner. It represents the right of a rational person to express personal decisions independent of outside interference and to have these decisions honored. It can be argued that autonomy occupies a central place in Western healthcare ethics because of the popularity of the Enlightenment-era phil- osophy of Immanuel Kant. However, it is note- worthy that autonomy is not emphasized in an ethic of care and virtue ethics and these also are popular approaches to ethics today.

The principle of autonomy sometimes is de- scribed as respect for autonomy (Beauchamp & Childress, 2013). In the domain of health care, respecting a patient’s autonomy includes obtaining informed consent for treatment; facilitating and supporting patients’ choices regarding treatment options; allowing patients to refuse treatments; disclosing comprehensive and truthful information, diagnoses, and treat- ment options to patients; and maintaining pri- vacy and confidentiality. Respecting autonomy also is important in less obvious situations, such as allowing home care patients to choose a tub bath versus a shower when it is safe to do so and an elderly long-term care resident to choose her favorite foods when they are medically pre- scribed. In fact, if the elder is competent and has been properly informed about the risks, she has the right to choose to eat foods that are not med- ically prescribed. Restrictions on an individual’s autonomy may occur in cases when a person presents a potential threat for harming others, such as exposing other people to communicable diseases or committing acts of violence; people generally lose the right to exercise autonomy or self-determination in such instances.

Respecting patients’ autonomy is im- portant, but it also is important for nurses to

receive respect for their professional auton- omy. In considering how the language nurses choose defines the profession’s place in health care, Munhall (2012) used the word autonomy (auto-no-my) as an example. She reflected on how infants and children first begin to express themselves through nonverbal signs, such as laughing, crying, and pouting, but by the time children reach the age of 2 years, they usually “have learned to treasure the word no” (p. 40). Munhall calls the word no “one of the most im- portant words in any language” (p. 40). Being willing and able to say no is part of exercising one’s autonomy.

Informed Consent Informed consent in regard to a patient’s treat- ment is a legal and ethical issue of autonomy. At the heart of informed consent is respecting a person’s autonomy to make personal choices based on the appropriate appraisal of infor- mation about the actual or potential circum- stances of a situation. Though all conceptions of informed consent must contain the same basic elements, people present the description of these elements differently. Beauchamp and Childress (2013) outlined informed consent according to seven elements (see BOX 2-2).

BOX 2-2 Elements of Informed Consent

I. Threshold elements (preconditions) 1. Competence (to understand and

decide) 2. Voluntariness (in deciding)

II. Information elements 3. Disclosure (of material information) 4. Recommendation (of a plan) 5. Understanding (of 3 and 4)

III. Consent elements 6. Decision (in favor of a plan) 7. Authorization (of the chosen plan)

Data from Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.). New York, NY: Oxford University Press, p. 124.

30 Chapter 2 Introduction to Bioethics and Ethical Decision Making

Antonio Thomas

Dempski (2009) presented three basic ele- ments that are necessary for informed consent to occur:

1. Receipt of information: This in- cludes receiving a description of the procedure, information about the risks and benefits of having or not having the treatment, reasonable alternatives to the treatment, prob- abilities about outcomes, and “the credentials of the person who will perform the treatment” (Dempski, 2009, p. 78). Because it is too de- manding to inform a patient of every possible risk or benefit in- volved with every treatment or pro- cedure, the obligation is to inform the person about the information a reasonable person would want and need to know. Information should be tailored specifically to a person’s personal circumstances, including providing information in the per- son’s spoken language.

2. Consent for the treatment must be voluntary: A person should not be under any influence or coerced to provide consent. This means pa- tients should not be asked to sign a consent form when they are under the influence of mind- altering medications, such as narcotics. Depending on the circumstances, consent may be verbalized, writ- ten, or implied by behavior. Silence does not convey consent when a reasonable person would normally offer another sign of agreement.

3. Persons must be competent: Per- sons must be able to communicate consent and to understand the in- formation provided to them. If a person’s condition warrants trans- ferring decision-making authority to a surrogate, informed consent obligations must be met with the surrogate.

It is neither ethical nor legal for a nurse to be responsible for obtaining informed con- sent for procedures performed by a physician (Dempski, 2009). In discussing a lawsuit, nurse and healthcare attorney Carolyn Bup- pert (2017) reported that some physicians try to delegate informed consent to other health- care clinicians, such as nurses, nurse prac- titioners, and physician assistants. In 2017, the Pennsylvania Supreme Court ruled on a lawsuit involving informed consent obtained partially between a patient and a physician assistant and partially between the patient and her physician. The Pennsylvania court upheld a state law that informed consent is a physician’s responsibility. Nurses may need to display the virtue of courage if physicians attempt to del- egate this responsibility to them. Though both nurses and physicians in some circumstances may believe nurses are well versed in assuring that the elements of informed consent are met for medical or surgical invasive treatments or

LEGAL PERSPEC TIVE

Nurses should not obtain informed consent for a provider who will perform a patient’s invasive procedure. However, nurses may be legally liable if they know or should have known informed consent was not obtained and they do not appropriately notify providers or supervisors about this deficiency.

LEGAL PERSPEC TIVE

Assault and battery are two legal terms describing offenses against a person. Both terms are relevant to the ethical requirement of informed consent. Assault is the threat of harm; for example, someone commits assault if he or she acts or talks in a way that causes another person to feel apprehension about his or her physical safety. Battery consists of one person offensively touching another person without the person’s consent.

Autonomy 31

procedures performed by a physician, nurses must refrain from accepting this responsibility.

On the other hand, it is certainly within a nurse’s domain of responsibility to help iden- tify a suitable person to provide informed consent if a patient is not competent; to ver- ify that a patient understands the information communicated by the professional performing the procedure, including helping to secure in- terpreters or appropriate information for the patient in the patient’s spoken language; and to notify appropriate parties if the nurse knows a patient has not given informed consent for a procedure or treatment. In fact, it is ethically incumbent upon nurses to facilitate patients’ opportunities to give informed consent.

Advanced practice nurses are legally and ethically obligated to obtain informed consent before performing risky or invasive treatments or procedures within their scope of practice. In everyday situations, all nurses are required to explain nursing treatments and procedures to patients before performing them. Nursing procedures do not need to meet  all the re- quirements of informed consent if procedures are not risky or invasive (Dempski, 2009). If a patient understands a treatment or proced- ure and allows the nurse to begin the nursing care, consent has been implied. A competent person may convey implied consent when the person participates in or cooperates with an action without explicitly verbalizing consent or formally signing a consent form. Implied consent often is used for low to essentially nonrisky procedures. Healthcare providers need to know when implied consent is ac- ceptable and full informed consent must be obtained. Nurses should keep a heightened awareness to assure that the person is com- petent to consent to an intervention and does not feel intimidated or coerced into consenting to a procedure performed by the nurse or any other healthcare worker.

When treatments and procedures that normally require consent need to be per- formed in an emergency situation, informed consent should be obtained from the patient

BOX 2-3 Four Elements of Malpractice

1. The professional must have a duty to the patient.

2. The professional must have breached that duty.

3. The patient must experience harm or damages.

4. The patient’s harm or damages must be directly connected to the professional’s negligence. This fourth element involves a situation in which 100% of harm or damages are attributed to the professional’s negligent action or maybe only a partial amount is attributed to the action of the professional. For example, the patient also may have contributed to the harm or damages (i.e., contributory negligence).

To decide about malpractice, expert witnesses are used to determine what a similar healthcare professional would do or would have done in a situation similar to the case at the center of the lawsuit.

if possible. If this is not possible, informed consent should be obtained from the patient’s next of kin or surrogate. When reasonable efforts have been made to obtain informed consent but no one is competent or available to provide the consent or time does not allow for informed consent because of the threat of death and/or disability, it is permissible to pro- ceed with treatments and procedures without informed consent. However, it is important to keep in mind the four main elements that jus- tify a malpractice suit (see BOX 2-3) and what a reasonable healthcare professional would do in a situation. The four elements of malpractice are evaluated in all malpractice cases.

Intentional Nondisclosure In the past, medical and nursing patient care errors were something to be swept under the

32 Chapter 2 Introduction to Bioethics and Ethical Decision Making

rug, and care was taken to avoid patient dis- covery of these errors. However, in the 1990s, when healthcare leaders realized that huge numbers of patients, as many as 98,000 per year, were dying from medical errors, the In- stitute of Medicine (IOM) began a project to analyze medical errors and try to reduce them. One outcome of the project is the book To Err Is Human: Building a Safer Health Care System (IOM, 2000). The IOM project committee de- termined that to err really is human and good people working within unsafe systems make the most errors.

Based on the IOM’s work, it is now ex- pected that errors involving serious, prevent- able adverse events be reported to patients and through other organizational reporting systems, and possibly external reporting sys- tems, on a mandatory basis (IOM, 2000). This should be easy to understand from an ethics standpoint, but reporting near misses has been more controversial (Lo, 2009). “In a near miss, an error was committed, but the patient did not experience clinical harm, either through early detection or sheer luck” (Agency for Health- care Research and Quality [AHRQ] Patient Safety Network [PSNet], 2018, para. 5). An ex- ample provided by PSNet is a nurse trying to administer medications to the wrong patient. The patient notices that the medications are not correct for him and harm is avoided. If the patient had been less aware of his correct med- ications, harm may have occurred.

Some professionals tend to avoid telling patients about near-miss errors because no harm was done to the patient, but ethicists rec- ommend disclosure of these events. Being hon- est and forthright with patients promotes trust, and secrecy is unethical (Jonsen, Siegler, & Winslade, 2010). In addition to the direct eth- ical implications of being honest with patients, much can be learned from investigating the root causes of near-miss errors. Trying to pre- vent errors is an ethical issue unto itself, which falls under the principle of nonmaleficence (see discussion of this principle later in this chapter).

Intentionally withholding information from a patient or surrogate is legal in emer- gency situations, as previously discussed, or when patients waive their right to be informed. Respecting a patient’s right not to be informed is especially important in delivering culturally sensitive care because a person not wanting to know about serious illnesses is sometimes cul- turally based. Other, more legally and ethically controversial circumstances of intentionally not disclosing relevant information to a pa- tient involve three healthcare circumstances (Beauchamp & Childress, 2013). The first cir- cumstance falls under therapeutic privilege. The second relates to therapeutically using placebos. The third involves withholding in- formation from research subjects to protect the integrity of the research.

By invoking therapeutic privilege, physicians were traditionally supported in withholding information from patients if physi- cians, based on their sound medical judgment, believed “divulging the information would potentially harm a depressed, emotionally drained, or unstable patient” (Beauchamp & Childress, 2013, p. 127). Standards about what constitutes therapeutic privilege have differed among legal jurisdictions with standards rang- ing from withholding information if the physi- cian believes the information would have any negative effect on the patient’s health to with- holding information only if divulging it is likely to have a serious effect. The American Medical Association’s (AMA, 2018) current opinion statement, included as part of the AMA’s ethics code, indicates that “withholding information without the patient’s knowledge or consent is ethically unacceptable” (para. 2). The AMA’s opinion statement clearly directs physicians to be honest and open with patients about their healthcare status unless a patient has asked not to be informed or the situation is an emergency. A physician does have the leeway in some cir- cumstances, however, to delay telling patients pertinent facts about their condition until the time is deemed safe and appropriate to do so. Disclosure should be delivered in a way that

Autonomy 33

meets the patient’s needs and according to an explicit plan to be honest with the patient.

Placebos, when used therapeutically, are inactive substances given to a patient in an attempt to induce a positive health outcome through the patient’s belief that the inert sub- stance really carries some beneficial power. The patient is unaware that the substance (pla- cebo) is inactive. It is interesting that at least one study has shown placebos can have a pos- itive effect in a majority of patients even when the patients know they are receiving an inert pill (Scuderi, 2011). Proponents of using place- bos say the action is covered under a patient’s general consent to treatment, though the con- sent is not entirely informed. However, there is a general consensus that the therapeutic use of placebos is unethical (Jonsen et  al., 2010) be- cause it violates a patient’s autonomy and can seriously damage trust between patients and healthcare professionals. The use of placebos is ethical when used properly during experimen- tal research. Participants in a research control group often are given a placebo so they can be compared to an experimental group receiving the treatment being studied. Research partici- pants are fully informed that they may receive a placebo rather than the actual treatment.

Strict rules apply to research studies re- quiring that research subjects be protected from manipulation and personal risks. Thus, informed consent in research has stringent requirements. Withholding information from research subjects should never be undertaken lightly. Intentional nondisclosure sometimes is allowed only if the research is relatively risk free to the participants and the nature of the research is behavioral or psychological and disclosure might seriously skew the outcomes of the research.

Patient Self-Determination Act The Omnibus Reconciliation Act of 1990 (OBRA-90) advanced directives provisions are usually referred to as the Patient Self-Determi- nation Act (PSDA). These provisions provide

passed by the U.S. Congress in 1990, is the first federal statute designed to facilitate a patient’s autonomy through the knowledge and use of advance directives. Healthcare providers and organizations must provide written information to adult patients regarding state laws covering the right to make healthcare decisions, refuse or withdraw treatments, and write advance direc- tives. One of the underlying aims of the PSDA is to increase meaningful dialogue about patients’ rights to make autonomous choices about re- ceiving or not receiving health care.

It is important that dialogue about end-of-life decisions and options is not lost in organizational admission processes and paper- work or in other ways. Nurses provide the vi- tal communication link between the patient’s wishes, the paperwork, and the provider. When an appropriate opportunity arises, nurses need to take an active role in increasing their dialogue with patients in regard to patients’ rights and end-of-life decisions. In addition to responding to the direct questions patients and families ask about advance directives and end-of-life options, nurses would do well to listen to and observe patients’ subtle cues that signal their anxiety and uncertainty about end- of-life care. A good example of compassionate care is when nurses actively listen to patients and try to alleviate patients’ uncertainty and fears in regard to end-of-life decision making.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy and Security Rules “Within HHS [Health and Human Services], the Office for Civil Rights (OCR) has respon- sibility for enforcing the [HIPAA] Privacy and Security Rules with voluntary compli- ance activities and civil money penalties” (U.S. Department of Health and Human Services [HHS], n.d.b, para. 2). The HIPAA Privacy Rule is a federal regulation designed to protect people from disclosure of their personal health

34 Chapter 2 Introduction to Bioethics and Ethical Decision Making

information other than for the provision of health care and other need-to-know purposes on a minimum, necessary basis (HHS, n.d.c, 2003). The intent of the rule is to ensure pri- vacy while facilitating the flow of information necessary to meet the needs of patients.

The Privacy Rule protects all “individ- ually identifiable health information” held or transmitted by a covered entity or its business associate, in any form or media, whether elec- tronic, paper, or oral. The Privacy Rule calls this information “protected health informa- tion (PHI)” (45 C.F.R. § 160.103, as cited in HHS, 2003, p. 3).

The Security Rules of the act operation- alize the Privacy Rules. These rules contain standards addressing privacy safeguards for electronic protected health information (HHS, n.d.b). The rule is designed to “assure the con- fidentiality, integrity, and availability of elec- tronic protected health information” (HHS, n.d.b, para. 2).

All patient-identifiable protected health information is to be kept private unless it is be- ing used for patient care; a patient agrees to a release; or it is released according to legitimate, limited situations covered by the act. It is in- cumbent on all healthcare professionals to be

familiar with the content of the act. To gain a better understanding of HIPAA, visit HHS.gov, and answer the questions in BOX 2-4. Other, spe- cial health information privacy issues addressed by the HHS (n.d.a) include the following:

■ Public health: Sometimes, there is a legiti- mate need to release medical information for the protection of public health.

■ Research: Private information is protected, but processes are used to allow researchers to conduct well-designed studies.

■ Emergency preparedness: As with other public health issues, sometimes access to protected information is allowed to facili- tate emergency preparedness.

■ Health information technology: The con- fidential maintenance and exchange of information via electronic formats is sup- ported by the act.

■ Genetic information: The Genetic Infor- mation Nondiscrimination Act (GINA) of 2008 identifies genetic information as health information and requires Privacy Rule modifications to ensure that no one is discriminated against in employment or for insurance coverage based on genetic information.

BOX 2-4 How Well Do You Know HIPAA?

1. May physician’s offices or pharmacists leave messages for patients at their homes, either on an answering machine or with a family member, to remind them of appointments or to inform them that a prescription is ready?

2. Can the phone number of a patient’s room be released as part of the facility directory? 3. May a healthcare provider discuss a patient’s health information over the phone with the

patient’s family, friends, or others involved in the patient’s care or payment for care? 4. Does the HIPAA Privacy Rule change the way in which a person can grant another person

healthcare power of attorney? 5. How are covered entities expected to determine what the minimum necessary information is

that can be used, disclosed, or requested for a particular purpose? 6. Does the HIPAA Privacy Rule permit healthcare providers to use email to discuss health issues

and treatment with their patients? 7. Do the HIPAA Privacy Rule protections apply to the health information of deceased individuals?

Find complete answers at FAQ for Professionals. Retrieved from https://www.hhs.gov/hipaa/for -professionals/faq/index.html

Autonomy 35

▸ Nonmaleficence Nonmaleficence is the principle used to com- municate the obligation to do no harm. Em- phasizing the importance of this principle is as old as organized medical practice. Healthcare professionals have historically been encour- aged to do good (beneficence), but if for some reason they cannot do good, they are required to at least do no harm. Because of the two sides of the same coin connotation between these two principles, some people consider them to be essentially one and the same. However, many ethicists, including Beauchamp and Childress (2013), do make a distinction.

Nonmaleficence is the maxim or norm that “one ought not to inflict evil or harm” (Beau- champ & Childress, 2013, p. 152), whereas be- neficence includes the following three norms: “one ought to prevent evil or harm, one ought to remove evil or harm, [and] one ought to do or promote good” (p. 152). As evidenced by these maxims, beneficence involves action to help someone, and nonmaleficence requires “inten- tional avoidance of actions that cause harm” (p. 152). In addition to violating the maxim to not intentionally harm another person, some of the issues and concepts listed by Beauchamp and Childress as frequently involving or requir- ing the obligation of nonmaleficence are in- cluded in BOX 2-5.

Best practice and due care standards are adopted by professional organizations and regulatory agencies to minimize harm to pa- tients. Regulatory agencies develop oversight procedures to ensure that healthcare providers maintain the competence and skills needed to

properly care for patients. Nonmaleficence has a wide scope of implications in health care, includ- ing the need to avoid negligent care and harm when deciding whether to provide or withhold or withdraw treatment and considerations about rendering extraordinary or heroic treatment.

Futility The distinctions included in Box 2-5 often are associated with end-of-life care. Violating the principle of nonmaleficence may involve issues of medical futility. Though it sometimes is difficult to accurately predict the outcomes of all interventions, futile treatments are treatments a healthcare provider, when using

LEGAL PERSPEC TIVE

Negligence: Failure to render reasonable care, which results in damages or injury. Malpractice: A negligent act by a professional, usually someone licensed. See the four elements of malpractice in Box 2-3.

BOX 2-5 Issues and Concepts Associated with the Principle of Nonmaleficence

1. Upholding standards of due care means abiding by the standards that are specific to one’s profession, the acceptable and expected care a reasonable person in that profession would render.

2. Negligence is “the absence of due care” (Beauchamp & Childress, 2013, p. 155) and imposing a risk of harm; imposing an unintended careless risk of harm or imposing an intentional reckless risk of harm.

3. Making distinctions of and rules governing nontreatment and end-of-life decisions (Beauchamp & Childress, 2013, p. 158): a. Withholding and withdrawing life-

sustaining treatment b. Extraordinary (or heroic) and

ordinary treatment c. Sustenance technologies and medical

treatments d. Intended effects and merely foreseen

effects (rule of double effect) e. Killing and letting die

Data from Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.). New York, NY: Oxford University Press.

36 Chapter 2 Introduction to Bioethics and Ethical Decision Making

Antonio Thomas

good clinical judgment, does not believe will provide a beneficial outcome for a patient. Consequently, these treatments may instead cause harm to a patient, such as a patient hav- ing to endure a slow and painful death that may have otherwise occurred in a quicker and more natural or humane manner. Clini- cal judgments usually are made in the face of uncertainty (Jonsen et al., 2010), even though medical probabilities often are fairly clear.

Healthcare professionals are not ethically bound to deliver futile treatments. A simplistic example follows: a patient or surrogate cannot legitimately demand that a provider adminis- ter an antibiotic to a patient to treat a virus. Antibiotics are not biologically plausible treat- ments for viruses. Hence, the treatment would be futile, or ineffective. Antibiotic treatment involves risks to patients as well as to the pub- lic through the development of drug resistance when antibiotics are used inappropriately. This example is fairly easy to understand, but as the complexity of potentially futile treatments in- creases, the likelihood of needing to navigate confusing situations with ethical and legal pit- falls also increases. Cases of potential futility that involve differing recommendations be- tween healthcare providers or healthcare pro- viders and/or patients and families should be referred to and discussed by ethics committees. Often, when the potential patient outcomes are obscure, ethics committees err on the side of recommending the treatment desired by the patient and/or family, especially to avoid legal repercussions and maintain the goodwill of the family and the larger community.

Rule of Double Effect The rule, or doctrine, of double effect is mentioned in Box 2-5. This doctrine is at- tributed to the Medieval saint Thomas Aqui- nas (1224–1274) from his book Summa Theologica (Aquinas, 1947). Aquinas op- posed St. Augustine’s earlier position that it is unjust for a person to kill another person in self-defense. Details of both arguments can be

found in Summa Theologica, but Aquinas’s ba- sic premise for justifying killing in self-defense is that an act can have two effects—one effect is the intended effect (self-defense) and the other effect is “beside the intention” (killing another person during self-defense actions) (para. 64). Aquinas argued that moral acts are judged on what is intended, not what is acci- dental. He further stipulated that the person acting in self-defense should use force only in proportion to what is needed for one’s personal defense and that it should not be done with “private animosity” (para. 64).

In healthcare, performing some actions may have two potential outcomes. One is the intended good outcome, but to achieve the good outcome, a second, less acceptable out- come also might be foreseen to occur. In these situations, one has to gauge and balance ac- tions according to their good, intended effects as compared to their possible harmful, ad- verse effects. For example, although research has shown that giving morphine in regular, increasing increments for pain or respiratory distress at the end of life rarely causes com- plete cessation of respirations, it is possible for respiratory arrest to occur in this type of situation. It is legal and ethical for healthcare professionals to treat pain and respiratory dis- tress, particularly at the end of life, with in- creasing increments of morphine even though it is foreseen that cessation of respirations may occur. “The nurse should provide inter- ventions to relieve pain and other symptoms in the dying patient consistent with palliative care practice standards and may not act with the sole intent to end life” (American Nurses Association [ANA], 2015, p. 3). The terms killing and letting die raise issues of legality,

ETHICAL REFLEC TION

Research examples of using the rule of double effect in health care. Debate the ethics of these examples.

Nonmaleficence 37

Antonio Thomas

ethics, homicide, suicide, euthanasia, acts of commission and omission, and active–passive distinctions, which are beyond the scope of this chapter.

Slippery Slope Arguments Often, a slippery slope argument is a met- aphor used as a “beware the Ides of March” warning with no justification or formal, logi- cal evidence to back it up (Ryan, 1998, p. 341). A slippery slope situation is one that may be morally acceptable when the current, primary event is being discussed or practiced but later could hypothetically slip toward a morally un- acceptable situation. A slippery slope situation is somewhat like a runaway horse that cannot be stopped after the barn door is left open. People using a slippery slope argument tend to believe the old saying that when people are given an inch, they eventually may take a mile. Because it is argued that harm may be inflicted if the restraints on a particular practice are re- moved, sometimes, the concept of the slippery slope is considered to fall under the principle of nonmaleficence.

Slippery slope arguments may move to- ward illogical extremes. Therefore, people who are afraid of a dangerous slide to the bottom of the slope on certain issues need to find ev- idence justifying their arguments rather than trying to form public opinions and policies based only on alarmist comparisons. One ex- ample of a slippery slope debate occurred with the legalization of physician-assisted suicide (PAS), such as the acts legalized by the Oregon Death with Dignity Act. Proponents of the slip- pery slope argument say allowing PAS, which involves a patient’s voluntary decision and self-administration of lethal drugs in well-de- fined circumstances, may or may not in itself be morally wrong. However, slippery slope proponents argue the widespread legalization of PAS may lead to the eventual legalization of nonvoluntary practices of euthanasia. The Oregon Death with Dignity Act was passed in October 1997, and as of 2018 no slide toward

the legalization of nonvoluntary euthanasia has occurred in the United States even though other states also have legalized PAS or physi- cian-assisted death (PAD). Opponents of slip- pery slope arguments believe people proposing these arguments mistrust people’s abilities to make definitive distinctions between moral/ legal and immoral/illegal issues and exercise appropriate societal controls.

FOCUS FOR DEBATE

Though the procedure currently is illegal in the United States, other countries, such as the United Kingdom and Ukraine, have allowed in vitro fertilization using the DNA from three people to prevent mitochondrial diseases in babies.

1. Search the internet, and check the status of the ethical positions and laws regarding three-parent babies.

2. Is this type of procedure a slippery slope issue? Why or why not?

▸ Beneficence The principle of beneficence consists of per- forming deeds of “mercy, kindness, friendship, charity and the like” (Beauchamp & Childress, 2013, p. 202). Beneficence means people take actions to benefit and promote the welfare of other people. Examples of moral rules and obligations underlying the principle of benefi- cence are listed in BOX 2-6.

Whereas people are obligated to act in a nonmaleficent manner toward all people— that is, not to harm anyone—there are limits to beneficence or the benefits people are expected to bestow on other people. Generally, people act more beneficently toward people whom they personally know or love rather than to- ward people not personally known to them, though this certainly is not always the case.

Because of professional standards and so- cial contracts, physicians and nurses have a

38 Chapter 2 Introduction to Bioethics and Ethical Decision Making

Antonio Thomas
Antonio Thomas

responsibility to be beneficent in their work. Nurses are directed in Provision 2.1 of the Code of Ethics for Nurses with Interpretive Statements (ANA, 2015) to have their patients’ interests and well-being as their primary concern. Therefore, though sometimes there are limits to the good nurses can do, nurses have a more stringent obli- gation to act according to the principle of benef- icence than does the general public. Doing good toward and facilitating the well-being of one’s pa- tients is an integral part of being a moral nurse.

Paternalism Occasionally, healthcare professionals may experience ethical conflicts when confronted with having to make a choice between respect- ing a patient’s right to self-determination (au- tonomy) and doing what is good for a patient’s well-being (beneficence). Sometimes, health- care professionals believe they, not their pa- tients, know what is in a patient’s best interest. In these situations, healthcare professionals may be tempted to act in ways they believe pro- mote a patient’s well-being (beneficence) when the actions actually are a violation of a patient’s right to exercise self-determination (auton- omy). The deliberate overriding of a patient’s opportunity to exercise autonomy because of a perceived obligation of beneficence is called paternalism. The word reflects its roots in fa- therly or male (paternal) hierarchical relation- ships, governance, and care. When pondering paternalism, one might think of the title of the 1954 television show Father Knows Best.

If a nurse avoids telling a patient that her blood pressure is elevated because the nurse be- lieves this information will upset the patient and consequently further elevate her blood pressure, this is an example of paternalism. A more ethical approach to the patient’s care is to unexcitedly give the patient truthful information while help- ing her remain calm and educating her about successful ways to manage her blood pressure.

Two types of paternalism are listed in BOX 2-7. Although paternalism once was a

BOX 2-6 Rules of Beneficence

1. Protect and defend the rights of others. 2. Prevent harm from occurring to others. 3. Remove conditions that will cause harm

to others. 4. Help persons with disabilities. 5. Rescue persons in danger.

Data from Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.). New York, NY: Oxford University Press, p. 204.

BOX 2-7 Types of Paternalism

■ Soft paternalism: The use of paternalism to protect persons from their own nonvoluntary conduct. People justify its acceptance when a person may be unable to make reasonable, autonomous decisions. Examples of when soft paternalism is used include situations involving depression, substance abuse, and addiction.

■ Hard paternalism: “Interventions intended to prevent or mitigate harm to or to benefit a person, despite the fact that the person’s risky choices and actions are informed, voluntary, and autonomous” (Beauchamp & Childress, 2013, p. 217).

According to Beauchamp and Childress (2013), the following is a summary of justifiable reasons to practice hard paternalism:

1. A patient is at risk of a significant, preventable harm.

2. The paternalistic action will probably prevent the harm.

3. The prevention of harm to the patient outweighs risks to the patient of the action taken.

4. There is no morally better alternative to the limitation of autonomy that occurs.

5. The least autonomy-restrictive alternative that will secure the benefits is adopted. (p. 222)

Data from Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.). New York, NY: Oxford University Press.

Beneficence 39

victims” along with patients who are the “first and obvious victims of medical mistakes” (p. 726). Though Wu did not directly mention the principle of beneficence (doing good) or the virtue of benevolence (being kind), he did advocate that second victims need help from their colleagues to navigate the “grieving pro- cess” that occurs after one makes a serious mis- take (p. 727). Two well-publicized cases of the second victim phenomenon center on nurses Julie Thao and Kimberly Hiatt. Mistakes made by these nurses resulted in patient deaths and tragic outcomes for the nurses, especially in the case of Hiatt.

common practice among healthcare profes- sionals, in general, healthcare professionals are discouraged from using it today. Paternalism is still a common practice in certain situations and among people of some cultures who, for example, believe people with authority, such as physicians or male family members, should be allowed to make decisions in the best interests of patients and patients should not be given bad news, such as a terminal diagnosis.

ETHICAL REFLEC TION

1. Search the internet, and learn about the cases of nurses Julie Thao and Kimberly Hiatt.

2. List and discuss lessons that you and all healthcare professionals can learn from these two cases.

3. Describe how the principle of beneficence and the virtue of benevolence could be applied to these cases.

4. In addition to benevolence, which other virtues exhibited by their colleagues might have helped Thao and Hiatt?

5. Discuss personal virtues that might be helpful to second victims themselves to navigate the grieving process.

▸ Justice Justice, as a principle in healthcare ethics, refers to fairness; treating people equally and without prejudice; and the equitable distribu- tion of benefits and burdens, including assur- ing fairness in biomedical research. Most of the time, difficult healthcare resource alloca- tion decisions are based on attempts to answer questions regarding who has a right to health care, how much health care a person is enti- tled to, and who will pay for healthcare costs.

LEGAL PERSPEC TIVE

Motorcycle helmet laws vary among states from no law to a law based on age or a law for all riders. Should it be legal to mandate that motorcycle riders wear a helmet if they do not want to wear one? Is it ethical?

Second Victim Phenomenon A situation when the principle of beneficence is needed, which may not often be recognized but should be discussed more often, involves the second victim phenomenon. As discussed earlier in this chapter, the IOM began a project in the 1990s to study and reduce the plethora of healthcare errors. Findings from the project revealed that well-intentioned professionals in the midst of flawed processes and commu- nication systems make many preventable er- rors. Real people are involved in these flawed healthcare systems, and errors committed by these people take a personal toll on them (Scott, 2011).

A physician, Albert Wu (2000), coined the term second victim in an editorial in the British Medical Journal. He provided an example of a medical resident who made a serious error in interpreting a patient’s electrocardiogram, and the resident consequently was labeled as being incompetent. Wu lamented the fact that physicians are the victims of “an expectation of perfection” (p. 726). He proposed that health- care professionals, including nurses and phar- macists, who make mistakes are the “second

40 Chapter 2 Introduction to Bioethics and Ethical Decision Making

Antonio Thomas

Remember, however, that justice is one of Pla- to’s cardinal virtues. This means that justice is a broad concept in the field of ethics and con- sidered to be both a principle and a virtue.

Social Justice Distributive justice refers to the fair alloca- tion of resources, whereas social justice rep- resents the position that benefits and burdens should be distributed fairly among members of a society or, ideally, that all people in a society should have the same rights, benefits, and op- portunities. The mission to define and attain some measure of social justice is an ongoing and difficult activity for the world community. One only needs to think about the obligations of beneficence to identify how these two prin- ciples are related. For example, what are the limits of the obligation that people have to do good in distributing their assets to help others?

consider how basic health care for all people can be provided and what can be done to pre- vent social injustice worldwide, such as ways to alleviate poverty and hunger.

In his book A Theory of Justice, John Rawls (1971) proposed that fairness and equality be evaluated under a veil of ignorance. This concept means that if people had a veil to shield themselves from their own or others’ economic, social, and class standing, each person would be likely to make justice-based decisions from a position free of biases. Con- sequently, each person would view the distri- bution of resources in impartial ways. Under the veil, people would view social conditions neutrally because they would not know what their own position might be when the veil is lifted. This not knowing, or ignorance, of per- sons about their own social position means they would not be likely to try to gain any type of advantage for themselves by their choices. Rawls advocated two principles of equality and justice: (1) everyone should be given equal lib- erty regardless of their adversities, and (2) dif- ferences among people should be recognized by making sure the least-advantaged people are given opportunities for improvement.

In 1974, Robert Nozick presented the idea of an entitlement system in his book Anarchy, State, and Utopia. He proposed that individ- uals should be entitled to health care and the benefits of insurance only if they are able to pay for these benefits. Nozick emphasized a system of libertarianism, meaning justice and fair- ness are based on rewarding only those people who contribute to the system in proportion to their contributions. People who cannot afford health insurance are disadvantaged if Nozick’s

FOCUS FOR DEBATE

Debate the following issues as they relate to obligations of beneficence. What should be the limits of beneficence in these cases?

■ Rescuing a person who is drowning. ■ Alleviating global poverty. ■ Working as a nurse during a highly lethal

influenza pandemic. ■ Defending the rights of immigrants.

An analysis of social justice mostly has been used to evaluate the powers of competing social systems and the application of regula- tory principles on an impartial basis. Theories of social justice differ to some extent, but most of the theories are based on the notion that justice is related to fair treatment and similar cases should be treated in similar ways. Peo- ple who take a communitarian approach to social justice will seek the common good of the community rather than maximize individ- ual benefits and freedoms. If people think be- yond borders in promoting social justice, they

FOCUS FOR DEBATE

Is it ethical to ration health care to stretch healthcare dollars? Consider the different ways rationing criteria can be established; examples include age, income, social status, and diagnosis and treatment.

Justice 41

Antonio Thomas
Antonio Thomas
Antonio Thomas
Antonio Thomas

entitlement theory is used as a philosophy of social justice.

In his book Just Health Care, Norman Daniels (1985) used the basis of Rawls’s con- cept of justice and suggested a liberty principle. Daniels advocated national healthcare reform and proposed that every person should have equal access to health care and reasonable ac- cess to healthcare services. Daniels suggested there should be critical standards for a fair and equitable healthcare system, and he provided points of reference, or benchmarks, for this ap- plication of fairness in the implementation and development of national healthcare reform.

The Patient Protection and Affordable Care Act Signed into law by President Obama on March 23, 2010, the Affordable Care Act (ACA) was intended to enact comprehensive healthcare reform in the United States, including improv- ing quality and lowering healthcare costs and providing greater access to health care and new consumer protections (HHS, 2014). The ACA HHS website indicates that the act puts members of the American public in charge of their own health care. For a good overview of information about the law, the insurance mar- ketplace created by the law, prevention and well- ness benefits, and facts and features of the law, visit the HHS.gov website at https://www.hhs .gov/programs/health-insurance/index.html.

Before the enactment of the ACA, the long-standing U.S. healthcare system was based on a philosophy of market justice, that is, distributing health care as an economic good rather than a social good. The chang- ing U.S. philosophy related to the distribution of health care has prompted a battle between people who tend to be libertarians (concerned about individual freedoms) and people who tend to be communitarians (concerned about the common good). Pence (2015) outlined some of the main issues, questions, and pos- itions in regard to the ACA:

■ Will the ACA provide better efficiency in providing health care, or will the system be bogged down in federal bureaucracy? Medicare, Medicaid, and the Veterans Ad- ministration system are cited as success stories, even though each agency has gener- ated both quality and economic concerns. Overall, these federal programs have pro- vided fairly comprehensive health care for large numbers of people and have yet to go broke, as people have feared. On the neg- ative side, historically the federal govern- ment is not known for being efficient. The internet provides a plethora of information about wasteful federal expenditures.

■ Will the ACA make medicine rational? On the positive side, the ACA is an effort to control costs, equalize coverage, and make health care a moral endeavor. People against the act say, “the more we move to perfect equality, the more individual lib- erty vanishes” (Pence, 2015, p. 347). An- other point of contention is whether the better availability of health care will prompt more people to use resources indiscrimi- nately rather than rationally. This concern is founded somewhat on a slippery slope argument. This position cannot be sup- ported or refuted until data is gathered.

■ Is health care a right or a privilege? Many people in the United States consider Medi- care coverage to be a right. It is interesting that some of these same people are against a move toward universal coverage under the ACA. Rawls (1971) contended that justice is consistent with fairness within social structures. Health care falls within the American social structure; thus, on the surface of things, it is a right for all citizens. Recall from earlier in this chap- ter that Rawls’s veil of ignorance is a test of how to determine what is just and un- just in an unbiased way. One can ponder, under the veil, how many people would choose to be without basic healthcare cov- erage when the veil is lifted. Libertarians who are against the ACA contend that

42 Chapter 2 Introduction to Bioethics and Ethical Decision Making

Antonio Thomas

America was founded on negative rights of noninterference: rights to be left alone, to pursue happiness, and to think, speak, assemble, and worship without interference from govern- ment. Such “freedom from” differs dramatically from “freedom to.” The latter is a positive right to some service from others, that is, an entitlement. (Pence, 2015, p. 347)

One of the conundrums underlying this point of debate is whether minimum or basic health care can be defined at all to determine how far one’s rights should be extended. Does the ACA generate a situation of intergenera- tional injustice? People who oppose the ACA say young generations will be enslaved by taxes to pay for health care for older Americans. People in favor of the ACA say many young people are “free riders” (Pence, 2015, p. 354) of the system and some type of means testing process can be used for more financially secure seniors to pay more for coverage.

▸ Professional–Patient Relationships

The quality of patient care rendered by health- care professionals and patients’ satisfaction with health care often depend on harmonious relationships between professionals and pa- tients and among the members of professions themselves. If healthcare professionals view life as a web of interrelationships, all their rela- tionships potentially can affect the well-being of patients.

Unavoidable Trust When patients enter the healthcare system, they usually are entering a foreign and frightening environment (Chambliss, 1996; Zaner, 1991). Intimate conversations and activities, such as being touched and probed, that normally do

FOCUS FOR DEBATE

Take the points of debate offered by Pence, and investigate the issues further. Organize and engage in evidence-based debates around these issues and other ACA issues in the literature and on the internet. Examples for debate include the following questions, but there are a number of other issues that can be debated:

■ Is supporting versus not supporting the ACA a matter of ethics?

■ Is the social structure of America based on negative or positive rights? Which type of rights supports a more ethical social structure?

■ Is health care a right or a privilege? ■ Can minimum or basic health care be

defined? ■ Does the ACA provide a more efficient

system of health care? ■ Does the ACA set up a situation of

intergenerational injustice? ■ Does Rawls’s veil of ignorance provide

a good rationale for why people should support the ACA?

■ Does the widespread availability of health care lead to a waste of scarce resources (i.e., can Americans be trusted to use good judgment in how resources are used)?

LEGAL PERSPEC TIVE

After passage of the ACA, some politicians engaged in a prolonged attempt to repeal the act or delay implementation based on the premise that the law is unconstitutional; that is, the federal government cannot mandate individuals to purchase health insurance. After the election of President Trump, in December 2017, the individual mandate for insurance was repealed beginning in 2019 by the Tax Cuts and Jobs Act of 2017. Senator Orrin Hatch indicated this repeal started the end of the ObamaCare (i.e., the ACA) era. As of mid-2018, this is yet to be determined.

Professional–Patient Relationships 43

not occur between strangers are common- place between healthcare professionals and pa- tients. Patients frequently are stripped of their clothes, subjected to sitting alone in cold and barren rooms, and made to wait anxiously for frightening news regarding the continuation of their very being. When patients need help from healthcare professionals, they frequently feel a sense of vulnerability and uncertainty. The ten- sion patients feel when accessing health care is heightened by the need for what Zaner called unavoidable trust. In most cases, when they need care, patients have no option but to trust nurses and other healthcare professionals.

they can be. According to Zaner, healthcare professionals must promise “not only to take care of, but to care for the patient and family— to be candid, sensitive, attentive, and never to abandon them” (p. 54). It is paradoxical that trust is necessary before health care is rendered, but it can be evaluated in terms of whether the trust was warranted only after care is rendered. To practice ethically, nurses must never take for granted the fragility of patients’ trust.

Human Dignity In the first provision of the Code of Ethics for Nurses with Interpretive Statements, the ANA (2015) included the standard that a nurse must have “respect for human dignity” (p. 1). Typi- cally, people refer to maintaining dignity in re- gard to the circumstances of how people look, behave, and express themselves when they are being watched by others or are ill, aging, or dying; in circumstances of how people re- spect themselves and are respected by others; and in the honor accorded to the privacy of one’s body, emotions, and personhood. Nurses are charged with protecting a person’s dignity during all nursing care, and often a patient’s nurse is the primary person who guards a patient’s dignity during medical procedures. Healthcare settings can be scenes of profes- sionals rushing through treatments so they can efficiently move on to the next patient and job to be done. Nurses have many opportunities to be mindful of the person who is the patient: a person who wants to be respected.

Shotton and Seedhouse (1998) said the term dignity has been used in vague ways. They characterized dignity as persons being in a position to use their capabilities and pro- posed that a person has dignity “if he or she is in a situation where his or her capabilities can be effectively applied” (p. 249). For example, a nurse can enhance dignity when caring for an elderly person by assessing the elder’s prior- ities and determining what the elder has been capable of doing in the past and is capable of doing and wants to do in the present.

ETHICAL REFLEC TION

Suggest nursing actions to decrease patients’ uncomfortable feelings when they are experiencing unavoidable trust.

ETHICAL REFLEC TION

Find the poem “The Operation” by Anne Sexton online at https://www .poetryfoundation.org/poems/53113/the -operation-56d232209c14d. Read the poem reflectively, and do the following:

1. Analyze the story, symbolism, and feelings conveyed by Sexton in the poem; discuss and provide specific examples.

2. Discuss your perception of the quality of healthcare provider–patient relationships reflected in the poem; provide specific examples.

This unavoidable trust creates an asym- metrical, or uneven, power structure in rela- tionships between professionals and patients and the patients’ families (Zaner, 1991). Nurses’ responsiveness to this trust needs to include the promise to be the most excellent nurses

44 Chapter 2 Introduction to Bioethics and Ethical Decision Making

Antonio Thomas

A lack or loss of capability is frequently an issue for consideration when caring for pa- tients such as children, elders, and persons who are physically and mentally disabled. Having absent or diminished capabilities is consistent with what MacIntyre (1999) referred to in his discussion of human vulnerability. According to MacIntyre, people generally progress from a point of vulnerability in infancy to achiev- ing varying levels of independent, practical reasoning as they mature. However, all people, including nurses, would do well to realize that all persons have been or will be vulnerable at some point in their lives. Taking a “there but for the grace of God go I” stance may prompt nurses to develop what MacIntyre called the virtues of acknowledged dependence. These virtues include just generosity, misericordia, and truthfulness and are exercised in commun- ities of giving and receiving. Just generosity is a form of giving generously without keeping score of who gives or receives the most, mi- sericordia is a Latin word that signifies giving without prejudice based on urgent need, and truthfulness involves not being deceptive. Nurses who cultivate these three virtues, or excellences of character, can move toward pre- serving patients’ dignity and working for the common good of a community.

Patient Advocacy Nurses acting from a point of patient advo- cacy try to identify unmet patient needs and then follow up to address the needs appropri- ately (Jameton, 1984). Advocacy, as opposed to advice, involves the nurse’s moving from the patient to the healthcare system rather than moving from the nurse’s values to the patient. The concept of advocacy has been a part of the ethics codes of the International Council of Nurses (ICN) and the ANA since the 1970s (Winslow, 1988). In the Code of Eth- ics for Nurses with Interpretive Statements, the ANA (2015) continues to support patient ad- vocacy by elaborating on the “primacy of the patient’s interest” (p. 5) and requiring nurses

to work collaboratively with others to attain the goal of addressing the healthcare needs of patients and the public. Nurses are called upon to ensure that all appropriate parties are involved in patient care decisions, patients are provided with the information needed to make informed decisions, and collaboration is used to increase the accessibility and availability of health care to all patients who need it. The ICN (2012), in its Code of Ethics for Nurses, af- firms that the nurse must share “with society the responsibility for initiating and supporting action to meet the health and social needs of the public, in particular those of vulnerable populations” (p. 2).

▸ Moral Suffering Many times, healthcare professionals experi- ence a disquieting feeling of anguish, un- easiness, or angst that can be called moral suffering. Suffering in a moral sense has sim- ilarities to the Buddhist concept of dukkha, a Sanskrit word translated as suffering. Dukkha “includes the idea that life is impermanent and is experienced as unsatisfactory and imper- fect” (Sheng-yen, 1999, p. 37). The concept of dukkha evolved from the historical Buddha’s belief that the human conditions of birth, sick- ness, old age, and death involve suffering and are suffering. Nurses confront these human conditions every day. Not recognizing, and in turn struggling against, the reality that imper- manence, or the changing and passing away of all things, is inherent to human life, the world, and all objects is a cause of suffering.

Moral suffering can be experienced when nurses attempt to sort out their emotions when they find themselves in imperfect situations that are morally unsatisfactory or forces beyond their control prevent them from positively in- fluencing or changing unsatisfactory moral situations. Suffering occurs because nurses believe situations must be changed or fixed to bring well-being to themselves and others or alleviate the suffering of themselves and others.

Moral Suffering 45

Antonio Thomas
Antonio Thomas
Antonio Thomas

Moral suffering may arise, for example, from disagreements with imperfect institu- tional policies, such as an on-call policy or work schedule the nurse believes does not allow relaxation time for the nurse’s psycho- logical well-being. Nurses also may disagree with physicians’ orders that the nurses believe are not in patients’ best interests, or they may disagree with the way a family treats a patient or makes patient care decisions. Moral suffer- ing can result when a nurse is with a patient when the patient receives a terminal diagnosis or when a nurse’s compassion is aroused when caring for a severely impaired neonate or an el- der who is suffering and life-sustaining care is either prolonged or withdrawn. These are but a few examples of the many types of encoun- ters nurses may have with moral suffering.

Another important, but often unacknowl- edged, source of moral suffering may occur when nurses freely choose to act in ways they, themselves, would not defend as being morally commendable if the actions were honestly an- alyzed. For example, a difficult situation that may cause moral suffering for a nurse would be covering up a patient care error made by herself or himself or a valued nurse friend. On the other hand, nurses may experience moral suffering when they act virtuously and cour- ageously by doing what they believe is morally right despite anticipated disturbing conse- quences. Sometimes, doing the right thing or acting as a virtuous person would act is hard, but it is incumbent upon nurses to habitually act in virtuous ways, that is, to exhibit habits of excellent character.

The Dalai Lama (1999) proposed that how people are affected by suffering is often a matter of choice or personal perspective. Some people view suffering as something to accept and transform if possible. Causes may lead to- ward certain effects, and nurses are often able to change the circumstances or conditions of events so positive effects occur. Nurses can choose and cultivate their perspectives, attitudes, and emotions in ways that lead toward happiness and well-being even in the face of suffering.

The Buddha was reported to have said, “Because the world is sick, I am sick. Because people suffer, I have to suffer” (Hanh, 1998, p. 3). However, in the Four Noble Truths, the Buddha postulated that the cessation of suf- fering can be a reality through the Eightfold Path of eight right ways of thinking, acting, and being, sometimes grouped under the three general categories of wisdom, morality, and meditation. In other words, suffering can be transformed. When nurses or other health- care professionals react to situations with fear, bitterness, and anxiety, it is important to re- member that wisdom and inner strength are often increased most during times of the great- est difficulty. Thich Nhat Hanh (1998) wisely stated, “without suffering, you cannot grow” (p. 5). Therefore, nurses can learn to take their disquieting experiences of moral anguish and uneasiness—that is, moral suffering—and transform them into experiences that lead to well-being.

▸ Ethical Dilemmas An ethical dilemma is a situation in which an individual is compelled to choose between two actions that will affect the welfare of a sentient being and both actions are reasonably justified as being good, neither action is readily justi- fied as being good, or the goodness of the ac- tions is uncertain. One action must be chosen, thereby generating a quandary for the person or group who is burdened with the choice.

Kidder (1995) focused on one character- istic of an ethical dilemma when he described the heart of an ethical dilemma as “the ethics of right versus right” (p. 13). Though the best

ETHICAL REFLEC TION

Have you experienced moral suffering during your work as a nurse or student nurse? Explain.

46 Chapter 2 Introduction to Bioethics and Ethical Decision Making

choice about two right actions is not always self-evident, according to Kidder, right versus right choices clearly can be distinguished from right versus wrong choices. Right versus right choices are nearer to common societal and per- sonal values, whereas the closer one analyzes right versus wrong choices, “the more they begin to smell” (p. 17). He proposed that people generally can judge wrong choices according to three criteria: violation of the law, departure from the truth, and deviation from moral rec- titude. Of course, the selection and meaning of these three criteria can be a matter of debate.

When a person is facing a real ethical di- lemma, often, none of the available options feel right. Both choices may feel wrong. For a daughter trying to decide whether to withdraw life support from her 88-year-old mother, it may feel wrong not to try to save her moth- er’s life, but allowing her mother to suffer in a futile medical condition probably will also feel wrong. On the other hand, for a healthcare professional considering this same case, there may be no real dilemma involved—the health- care professional may see clearly that the right choice is to withhold or withdraw life support.

possibilities or reframing the problem itself ” (p. 99) to solve the problem. As an example, he presented the classic case of the Heinz di- lemma used by Lawrence Kohlberg in his re- search. The story is about Heinz, whose wife is dying of cancer. She needs a particular drug to save her life. The pharmacist who makes the drug charges much more than it costs him to make it. The cost is way beyond what Heinz can afford to pay. Heinz tries to borrow the money needed but is not successful. He asks the pharmacist to sell him the drug at a lower cost, but the pharmacist refuses his request. Fi- nally, Heinz robs the pharmacy to obtain the drug. The question is whether Heinz should have done this. Did Heinz face a dilemma? Weston discussed the Heinz dilemma with his students, and they generated some very cre- ative ways of approaching the problem that did not involve robbing the pharmacy.

▸ Introduction to Critical Thinking and Ethical Decision Making

In healthcare and nursing practice, moral matters are so prevalent that nurses often do not even realize they are faced with minute-to-minute opportunities to make eth- ical decisions (Chambliss, 1996; Kelly, 2000). It is vitally important that nurses have the ana- lytical thinking ability and skills to respond to many of the everyday decisions that must be made. Listening attentively to other people, in- cluding patients, and not developing hasty con- clusions are essential skills for nurses to conduct reasoned, ethical analyses. Personal values, professional values and competencies, ethical principles, and ethical theories and approaches are variables to consider when a moral decision is made. Pondering the questions “What is the right thing to do?” and “What ought I do in this circumstance?” is an ever-present normative consideration in nursing.

FOCUS FOR DEBATE

Abortion is legal, but many people believe it is not ethical. Does the legality of abortion affect whether it presents an ethical dilemma?

Considering the preceding explanations, it is important to note that the words ethical dilemma often are used loosely and inappro- priately. Weston (2011) stated, “today you can hardly even mention the word ‘moral’ without ‘dilemma’ coming up in the next sentence, if it waits that long” (p. 99). He called an ethical di- lemma “a very special thing” (p. 99), contend- ing that often, when people believe they face a dilemma, they are facing a “false dilemma”; the person needs only to work on identifying “new

Introduction to Critical Thinking and Ethical Decision Making 47

Critical Thinking The concept of critical thinking is used quite liberally today in nursing. Many nurses prob- ably have a general idea about the meaning of the concept, but they may not be able to clearly articulate answers to questions about its mean- ing. Examples of such questions include the following: Specifically, what is critical think- ing? Are critical thinking and problem solving interchangeable concepts? If not, what distin- guishes them? Can critical thinking skills be learned, or does critical thinking occur natu- rally? If the skill can be learned, how does one become a critical thinker? Is there a difference between doing critical thinking and reasoning?

Socrates’s method of teaching and ques- tioning, covered in Chapter 1, is one of the oldest systems of critical thinking. In modern times, the American philosopher John Dewey (1859–1952) is considered one of the early proponents of critical thinking. In his book How We Think, Dewey (1910/1997) summar- ized reflective thought as

active, persistent, and careful con- sideration of any belief or supposed form of knowledge in light of the grounds that support it, and the fur- ther conclusions to which it tends. . . . Once begun it is a conscious and vol- untary effort to establish belief upon a firm basis of reasons. (p. 6)

Paul and Elder (2006), directors of the Foundation for Critical Thinking, defined crit- ical thinking as “the art of analyzing and evalu- ating thinking with a view to improving it” (p. 4). They proposed that critical thinkers have cer- tain characteristics:

■ They ask clear, pertinent questions and identify key problems.

■ They analyze and interpret relevant infor- mation by using abstract thinking.

■ They are able to generate reasonable con- clusions and solutions that are tested ac- cording to sensible criteria and standards.

■ They remain open minded and consider alternative thought systems.

■ They solve complex problems by effect- ively communicating with other people.

The process of critical thinking is summarized by Paul and Elder (2006) as “self-directed, self-disciplined, self-monitored, and self-corrective thinking [that] requires rigorous standards of excellence and mindful command of their use” (p. 4). Fisher (2001) described the basic way to develop critical thinking skills as simply “thinking about one’s thinking” (p. 5).

Moral Imagination [Persons], to be greatly good, must imagine intensely and comprehensively; [they] must put [themselves] in the place of another and of many others. . . . The great instrument of moral good is the imagination.

—Percy Bysshe Shelley, Defense of Poetry

The foundation underlying the concept of moral imagination, an artistic or aesthetic ap- proach to ethics, is based on the philosophy of John Dewey. Imagination, as Dewey proposed it, is “the capacity to concretely perceive what is before us in light of what could be” (as cited in Fesmire, 2003, p. 65). Dewey (1934) stated that imagination “is a way of seeing and feeling things as they compose an integral whole” (p. 267). Moral imagination is moral decision mak- ing through reflection involving “empathetic projection” and “creatively tapping a situation’s possibilities” (Fesmire, 2003, p. 65). It involves moral awareness and decision making that

ETHICAL REFLEC TION

Perform a written self-analysis of your critical thinking skills. What are your strengths? In what ways do you need to improve? Be specific with your analysis.

48 Chapter 2 Introduction to Bioethics and Ethical Decision Making

goes beyond the mere application of stan- dardized ethical meanings, decision-making models, and bioethical principles to real-life situations.

The use of empathetic projection helps nurses be responsive to patients’ feelings, at- titudes, and values. To creatively reflect on a situation’s possibilities helps prevent nurses from becoming stuck in their daily routines and instead encourages them to look for new and different possibilities in problem solving and decision making that go beyond mere habitual behaviors. Although Aristotle taught that habit is the way people cultivate moral virtues, Dewey (1922/1988) cautioned that mindless habits can be “blinders that confine the eyes of mind to the road ahead” (p. 121). Dewey proposed that habit should be com- bined with intellectual impulse:

Habits by themselves are too organ- ized, too insistent and determinate to need to indulge in inquiry or imagi- nation. And impulses are too chaotic, tumultuous and confused to be able to know even if they wanted to.  .  . . A certain delicate combination of habit and impulse is requisite for observa- tion, memory and judgment. (p. 124)

Dewey (1910/1997) provided an example of a physician trying to identify a patient’s di- agnosis without proper reflection:

Imagine a doctor being called in to prescribe for a patient. The patient tells him some things that are wrong; his experienced eye, at a glance, takes in other signs of a certain disease. But if he permits the suggestion of this special disease to take possession prematurely of his mind, to become an accepted conclusion, his scientific thinking is by that much cut short. A large part of his technique, as a skilled practitioner, is to prevent the acceptance of the first suggestions that arise; even, indeed, to postpone

the occurrence of any very defin- ite suggestions till the trouble—the nature of the problem—has been thoroughly explored. In the case of a physician this proceeding is known as a diagnosis, but a similar inspection is required in every novel and com- plicated situation to prevent rushing to a conclusion. (p. 74)

Although Dewey’s example is about an in- dividual physician–patient clinical encounter, the example is also applicable for illustrating the dangers of rushing to conclusions in the moral practice of the art and science of nurs- ing with individuals, families, communities, and populations. The following story provides an example of a nurse not using moral imag- ination. A young public health nurse moves from a large city to a rural town and begins working as the occupational health nurse at a local factory. The nurse notices that a large number of workers at the factory have de- veloped lung cancer. He immediately assumes the workers have been exposed to some type of environmental pollution at the factory and the factory owners are morally irresponsible people. The nurse discusses his assessment with his immediate supervisor and an official at the district health department. Upon further assessment, the nurse finds data showing the factory’s environmental pollution is unusu- ally low. However, the nurse does learn that radon levels are particularly high in homes in the area and a large percentage of the factory workers smoke cigarettes. The nurse plans interventions to increase home radon testing and reduce smoking among employees.

In the following example, a home health nurse uses moral imagination. The nurse visits Mrs. Smith, a homebound patient diagnosed with congestive heart failure. The patient tells the nurse she has difficulty affording her med- ications and she does not buy the low-sodium foods the nurse recommends because the fresh foods are too expensive. However, the patient’s television set broke, and she bought

Introduction to Critical Thinking and Ethical Decision Making 49

a new, moderately priced television she is usu- ally watching when the nurse visits. The home health aide who visits the patient tells the nurse, “No wonder Mrs. Smith can’t afford her medications—she spent her money on a tele- vision.” Rather than judging the patient, the nurse uses her moral imagination to try to em- pathetically envision what it must be like to be Mrs. Smith—homebound, consistently short of breath, and usually alone. The nurse decides Mrs. Smith’s television may have been money well spent in terms of the patient’s quality of life. With Mrs. Smith’s physician and social worker, the nurse explores ways to help the patient obtain her medications. The nurse also works patiently with Mrs. Smith to try to de- velop a healthy meal plan that is affordable for her. Finally, the nurse engages in a construct- ive, nonthreatening discussion with the home health aide about why negative judgments and conclusions should be carefully considered. She is a mentor to the aide and teaches her about moral imagination.

Dewey (1910/1997) seemed to be trying to make the point that critical thinking and moral imagination require suspended judgment until problems and situations are fully explored and reflected upon. Moral imagination includes engaging in frequent considerations of “what if ?” with regard to day-to-day life events and novel situations. In a public interview on July 22, 2004, immediately after the U.S. Congress released the 9/11 Commission Report, former New Jersey governor and 9/11 Commission chairman Thomas Kean made a statement with regard to the findings about the probable causes of the failure to prevent the terrorist at- tacks on September 11, 2001 (Mondics, 2004).

The commission concluded, above all, that there was a “failure of imagination” (Mondics, 2004, p. A4).

An important role for nurses is to pro- vide leadership and help create healthy com- munities through individual-, family-, and population-based assessments and program planning, implementation, and evaluation. When assuming this key leadership role, nurses continually make choices and decisions that may affect the well-being of both individ- uals and populations. Opinions should not be formed hastily, nor should actions be taken without nurses cultivating and using their moral imaginations.

The High, Hard Ground and the Swampy, Low Ground It is generally agreed that nursing is based on the dual elements of art and science. Schön (1987) postulated that professional decision points sometimes arise when there is tension between how to attend to knowledge based on technical, scientific foundations and indeter- minate issues that lie beyond scientific laws. Schön (1987) described this tension as follows:

In the varied topography of profes- sional practice, there is a high, hard ground overlooking a swamp. On the high ground, manageable problems lend themselves to solution through the application of research-based theory and technique. In the swampy lowland, messy, confusing problems defy technical solutions. The irony of this situation is that the problems of the high ground tend to be rela- tively unimportant to individuals or society at large, however great their technical interest may be, while in the swamp lie the problems of great- est human concern. The practitioner must choose. (p. 3)

Gordon and Nelson (2006) argued that nursing has suffered by not emphasizing the

FOCUS FOR DEBATE

Do members of the nursing profession focus too much on nursing virtues and caring, thus minimizing a focus on nurses’ scientific knowledge and thereby hurting nursing’s public image?

50 Chapter 2 Introduction to Bioethics and Ethical Decision Making

profession’s scientific basis and the specialized skills required for nursing practice. These au- thors proposed the professional advancement of nursing has been hurt by nurses and others (including the general members of society) fo- cusing too much on the virtues of nurses and the caring nature of the profession, essentially the art of nursing:

Although much has changed for professional women in the twenti- eth century, nurses continue to rely on religious, moral, and sentimen- tal symbols and rhetoric—images of hearts, angels, touching hands, and appeals based on diffuse references to closeness, intimacy, and making a difference.  .  . . When repeated in

recruitment brochures and cam- paigns, appeals to virtue are un- likely to help people understand what nurses really do and how much knowledge and skill they need to do it. (pp. 26–27)

Reflective Practice Schön (1987) distinguished reflection-on- action from reflection-in-action. Reflection -on-action involves looking back on one’s ac- tions, whereas reflection-in-action involves stopping to think about what one is choosing and doing before and during one’s actions. In considering the value of reflection-in-action, Schön (1987) stated, “in an action present—a

ETHICAL REFLEC TION

Use the Gibbs Cycle (FIGURE 2-1), and reflect on a challenging, personal, ethical situation that occurred during your nursing practice or personal life..

Description

What happened?

The refective cycle (after Gibbs, 1988)

Analysis

What can you learn from the event?

Action plan

If it happens again what

would you do?

Conclusion

What could you have done

differently or in addition?

Feelings

What were your feelings?

Evaluation

What was good and bad about

the experience?

FIGURE 2-1 Gibbs’ Reflective Cycle. Courtesy of Graham Gibbs. (1988). Learning by doing: A guide to teaching and learning methods. Oxford, UK: Oxford Polytechnic.

Introduction to Critical Thinking and Ethical Decision Making 51

period of time, variable with the context, during which we can still make a difference to the sit- uation at hand—our thinking serves to reshape what we are doing while we are doing it” (p. 26). Mindful reflection while we are still able to make choices about our behaviors is preferable to looking backward. However, as the saying goes, hindsight is 20/20, so there is certainly learning that can occur from hindsight.

Because ethics is an active process of do- ing, reflection in any form is crucial to the practice of ethics. Making justified ethical decisions requires healthcare professionals to know themselves and their motives, ask good questions, challenge the status quo, and be continual learners (see BOX 2-8). There is no one model of reflection and decision making that can provide healthcare professionals with

BOX 2-8 The Five Rs Approach to Ethical Nursing Practice

1. Read and learn about ethical philosophies, approaches, and the ANA’s Code of Ethics for Nurses. Insight and practical wisdom are best developed through effort and concentration.

2. Reflect mindfully on one’s egocentric attachments—values, intentions, motivations, and attitudes. Members of moral communities are socially engaged and focus on the common good. This includes having good insight regarding life events, cultivating and using practical wisdom, and being generous and socially just.

3. Recognize ethical bifurcation (decision) points, whether they are obvious or obscure. Because of indifference or avoidance, nurses may miss both small and substantial opportunities to help alleviate human suffering in its different forms.

4. Resolve to develop and practice intellectual and moral virtues. Knowing ethical codes, rules, duties, and principles means little without being combined with a nurse’s good character.

5. Respond to persons and situations deliberately and habitually with intellectual and moral virtues. Nurses have a choice about their character development and actions.

Intellectual virtues Moral virtues

Insight Compassion

Practical wisdom Loving-kindness

Equanimity

Sympathetic joy

Insight: Awareness and knowledge about universal truths that affect the moral nature of nurses’ day-to-day life and work

Practical wisdom: Deliberating about and choosing the right things to do and ways to be that lead to good ends

Compassion: The desire to separate other beings from suffering Loving-kindness: The desire to bring happiness and well-being to oneself and other beings Equanimity: An evenness and calmness in one’s way of being; balance Sympathetic joy: Rejoicing in other people’s happiness

Considerations for Practice ■ Trying to apply generic algorithms or principles when navigating substantial ethical situations does

not adequately allow for variations in life narratives and contexts. ■ Living according to a philosophy of ethics must be a way of being for nurses before they encounter

critical ethical bifurcation points.

52 Chapter 2 Introduction to Bioethics and Ethical Decision Making

an algorithm for ethical practice. However, there are a number of models professionals can use to improve their skills of reflection and de- cision making during their practice. The Four Topics Method, discussed here, is an example of reflection-in-action.

▸ The Four Topics Approach to Ethical Decision Making

Jonsen and colleagues’ (2010) Four Topics Method for ethical analysis is a practical ap- proach for nurses and other healthcare profes- sionals. The nurse or team begins with relevant

facts about a particular case and moves toward a resolution through a structured analysis. In healthcare settings, ethics committees often resolve ethical problems and answer ethical questions by using a case-based, or bottom-up, inductive, casuistry approach. The Four Topics Method, sometimes called the Four Box Ap- proach (TABLE 2-1) is found in the book Clinical Ethics: A Practical Approach to Ethical Deci- sions in Clinical Medicine (Jonsen et al., 2010).

This case-based approach allows health- care professionals to construct the facts of a case in a structured format that facilitates critical thinking about ethical problems. Cases are an- alyzed according to four topics: “medical indi- cations, patient preferences, quality of life, and contextual features” (Jonsen et al., 2010, p. 8). Nurses and other healthcare professionals on

TABLE 2-1 Four Topics Method for Analysis of Clinical Ethics Cases

Medical Indications

The Principles of Beneficence and Nonmaleficence

1. What is the patient’s medical problem? Is the problem acute? Chronic? Critical? Reversible? Emergent? Terminal?

2. What are the goals of treatment?

3. In what circumstances are medical treatments not indicated?

4. What are the probabilities of success of various treatment options?

5. In sum, how can this patient be benefited by medical and nursing care, and how can harm be avoided?

Patient Preferences

The Principle of Respect for Autonomy

1. Has the patient been informed of benefits and risks, understood this information, and given consent?

2. Is the patient mentally capable and legally competent, and is there evidence of legal incapacity?

3. If mentally capable, what preferences about treatment is the patient stating?

4. If incapacitated, has the patient expressed prior preferences?

5. Who is the appropriate surrogate to make decisions for the incapacitated patient?

6. Is the patient unwilling or unable to cooperate with medical treatment? If so, why?

(continues)

The Four Topics Approach to Ethical Decision Making 53

Quality of Life

The Principles of Beneficence and Nonmaleficence and Respect for Autonomy

1. What are the prospects, with or without treatment, for a return to normal life, and what physical, mental, and social deficits might the patient experience even if treatment succeeds?

2. On what grounds can anyone judge that some quality of life would be undesirable for a patient who cannot make or express such a judgment?

3. Are there biases that might prejudice the provider’s evaluation of the patient’s quality of life?

4. What ethical issues arise concerning improving or enhancing a patient’s quality of life?

5. Do quality-of-life assessments raise any questions regarding changes in treatment plans, such as forgoing life-sustaining treatment?

6. What are plans and rationale to forgo life-sustaining treatment?

7. What is the legal and ethical status of suicide?

Contextual Features

The Principles of Justice and Fairness

1. Are there professional, interprofessional, or business interests that might create conflicts of interest in the clinical treatment of patients?

2. Are there parties other than clinicians and patients, such as family members, who have an interest in clinical decisions?

3. What are the limits imposed on patient confidentiality by the legitimate interests of third parties?

4. Are there financial factors that create conflicts of interest in clinical decisions?

5. Are there problems of allocation of scarce health resources that might affect clinical decisions?

6. Are there religious issues that might influence clinical decisions?

7. What are the legal issues that might affect clinical decisions?

8. Are there considerations of clinical research and education that might affect clinical decisions?

9. Are there issues of public health and safety that affect clinical decisions?

10. Are there conflicts of interest within institutions and organizations (e.g., hospitals) that may affect clinical decisions and patient welfare?

Reproduced from Jonsen, A. R., Siegler, M., & Winslade, W. J. (2010). Clinical ethics: A practical approach to ethical decisions in clinical medicine (7th ed.), p. 8. New York, NY: McGraw-Hill. ©2010 by McGraw-Hill Education.

TABLE 2-1 Four Topics Method for Analysis of Clinical Ethics Cases (continued)

the team gather information in an attempt to answer the questions in each of the four boxes. The Four Topics Method facilitates dialogue between the patient–family/surrogate dyad and members of the healthcare ethics team or committee. By following the outline of the questions, healthcare providers are able to in- spect and evaluate the full scope of the patient’s

situation and the central ethical conflict. Af- ter the ethics team has gathered the facts of a case, an analysis is conducted. Each case is unique and should be considered as such, but the subject matter of particular situations of- ten involves common threads with other eth- ically and legally accepted precedents, such as landmark cases that involved withdrawing

54 Chapter 2 Introduction to Bioethics and Ethical Decision Making

or withholding treatment. Though each case analysis begins with facts, the four fundamen- tal principles—autonomy, beneficence, non- maleficence, and justice—along with the Four Topics Method are considered together as the process and resolution take place (Jonsen et  al., 2010). In Table 2-1, each box includes principles appropriate for each of the four top- ics. To see an analysis of a specific case, go to http://depts.washington.edu/bioethx/tools /cecase.html.

ETHICAL REFLEC TION

Civility involves treating others with courtesy and kindness, whereas incivility is consistent with exhibiting rudeness and disrespect. Incivility seems to be pervasive in society today. Acting with incivility involves a decision. Sometimes, people develop such an ingrained habit of acting without civility that being rude and disrespectful to others seems to be automatic. Using the five Rs of ethical nursing practice model in Box 2-8, consider ways that incivility among nurses and nursing students can be reduced.

Frustration, anger, and other intense emotional conflicts may occur among health- care professionals or between healthcare professionals and the patient or the patient’s surrogates. Unpleasant verbal exchanges and hurt feelings can result. Openness and sensi- tivity toward other healthcare professionals, patients, and family members are essential behaviors for nurses during these times. As in- formation is exchanged and conversations take place, nurses need to maintain an attitude of respect as a top priority. If respect and sensi- tivity are maintained, lines of communication more likely will remain open.

The Healthcare Team When patients and families are experiencing distress and suffering, often it is during times

when decisions need to be made about risky procedures or end-of-life care. Family mem- bers may want medical treatment for their loved one, whereas physicians and nurses may be explaining to the family that to continue treatment most likely would be nonbeneficial or futile for the patient. When patients are weakened by disease and illness and family members are reacting to their loved one’s suf- fering, decisions regarding care and treatment become challenging for everyone concerned.

In caring for particular patients and inter- acting with their families, nurses sometimes find themselves caught in the middle of con- flicts. Though nurses frequently make ethical decisions independently, they also act as an in- tegral part of the larger team of decision mak- ers. Many problematic bioethical decisions will not be made unilaterally—not by physicians, nurses, or any other single person. By partici- pating in reflective dialogues with other pro- fessionals and healthcare personnel, nurses are often part of a larger team approach to ethical analysis. When a team is formally assembled and composed of preselected members who come together regularly to discuss ethical issues within an organization, the team is called an ethics committee. An organization’s ethics com- mittee usually consists of physicians, nurses, an on-staff chaplain, a social worker, a represen- tative of the organization’s administrative staff, possibly a legal representative, local community representatives, and others drafted by the team. Also, the involved patient, the patient’s family, or a surrogate decision maker may meet with one or more committee members. See BOX 2-9 for examples of the goals of an ethics committee.

Members of the healthcare team may ques- tion the decision-making capacity of the patient or family, and the patient’s or family’s decisions may conflict with the physician’s or healthcare team’s recommendations regarding treatment. Sometimes, a genuine ethical dilemma arises in a patient’s care, difficult decisions must be made, difficult and unpleasant situations must be navigated, or no surrogate can be located to help make decisions for an incompetent patient. When these situations emerge, a team approach

The Four Topics Approach to Ethical Decision Making 55

BOX 2-9 Goals of an Ethics Committee

■ Provide support by providing guidance to patients, families, and decision makers

■ Review cases, as requested, when there are conflicts in basic values

■ Assist in clarifying situations that are ethical, legal, or religious in nature that extend beyond the scope of daily practice

■ Help clarify issues, discuss alternatives, and suggest compromises

■ Promote the rights of patients ■ Assist the patient and family, as appropriate,

in coming to consensus with the options that best meet the patient’s care needs

■ Promote fair policies and procedures that maximize the likelihood of achieving good, patient-centered outcomes

■ Enhance the ethical tenor of both healthcare organizations and professionals

ETHICAL REFLEC TION

In class or on your own, watch the HBO movie Wit starring Emma Thompson.

1. Apply as many concepts to the movie as you can from what you have read about and learned in this chapter and Chapter 1.

2. Discuss your reflections with your peers in a classroom setting.

At times, nurses do not agree with phy- sicians’, family members’, or surrogates’ deci- sions regarding treatment and subsequently may experience moral suffering and uncer- tainty. When passionate ethical disputes arise between nurses and physicians or when nurses are seriously concerned about the action of patients’ decision-making representatives, nurses are the ones who often seek an ethics consultation. It is within the rights and duties of nurses to seek help and advice from other professionals when they experience moral un- certainty or witness unethical conduct in their work setting. This action is a part of the nurse’s role as a patient advocate.

KEY POINTS

■ Bioethics was born out of the rapidly expanding technical environment of the 1900s. ■ The four most well-known and frequently used bioethical principles are respect for autonomy,

beneficence, nonmaleficence, and justice. ■ Paternalism involves an overriding of autonomy in favor of the principle of beneficence. ■ Social justice emphasizes the fairness of how the benefits and burdens of society are distributed

among people. ■ Ethical dilemmas involve unclear choices, not clear matters of right versus wrong. ■ Nurses often experience a disquieting feeling of anguish, uneasiness, or angst in their work that is

consistent with what might be called moral suffering. ■ It is paradoxical that patients often must trust healthcare providers to care for them before the

providers show evidence that trust is warranted. ■ When acting as patient advocates, nurses try to identify patients’ unmet needs and help to address

these needs. ■ Nurses may develop good critical thinking skills by thinking about their thinking. ■ It is part of a nurse’s role as a patient advocate to make or suggest an ethics committee referral

when indicated.

to decision making is helpful and in accordance with the IOM’s (2003) call for healthcare pro- fessionals to work in interdisciplinary teams by cooperating, collaborating, communicating, and integrating care “to ensure that care is con- tinuous and reliable” (p. 4).

56 Chapter 2 Introduction to Bioethics and Ethical Decision Making

References Agency for Healthcare Research and Quality [AHRQ]

Patient Safety Network [PSNet]. (2018). Adverse events, near misses, and errors. Retrieved from https://psnet .ahrq.gov/primers/primer/34/adverse-events-near -misses-and-errors

American Medical Association (AMA). (2018). Withholding information from patients. Retrieved from https:// www.ama-assn.org/delivering-care/withholding -information-patients

American Nurses Association (ANA). (2015). Code of ethics for nurses with interpretive statements. Silver Spring, MD: Author.

Aquinas, T. (1947). Summa theologica (Benzinger Bros. Edition). (Fathers of the English Dominican Province, Trans.). Retrieved from https://dhspriory.org/thomas /summa/SS/SS064.html#SSQ64A7THEP1

Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.). New York, NY: Oxford University Press.

Buppert, C. (2017, September 18). A major court decision: Only physicians can obtain consent. Retrieved from https://www.medscape.com/viewarticle/885579

Chambliss, D. F. (1996). Beyond caring: Hospitals, nurses, and the social organization of ethics. Chicago, IL: University of Chicago Press.

Dalai Lama. (1999). Ethics for the new millennium. New York, NY: Riverhead Books.

Daniels, N. (1985). Just health care. New York, NY: Cambridge University Press.

Dempski, K. (2009). Informed consent. In S. J. Westrick & K. Dempski (Eds.), Essentials of nursing law and ethics (pp. 77–83). Sudbury, MA: Jones and Bartlett Publishers.

Dewey, J. (1934). Art as experience. New York, NY: Perigee Books.

Dewey, J. (1988). Human nature and conduct: The middle works, 1899–1924 (Vol. 14) (J. A. Boydston & P. Baysinger, Eds.). Carbondale, IL: Southern Illinois University Press. (Original work published 1922)

Dewey, J. (1997). How we think. Mineola, NY: Dover. (Original work published 1910)

Fesmire, S. (2003). John Dewey and moral imagination: Pragmatics in ethics. Bloomington, IN: Indiana University Press.

Fisher, A. (2001). Critical thinking: An introduction. Cambridge, UK: Cambridge University Press.

Gibbs, G. (1988). Learning by doing: A guide to teaching and learning methods. Oxford, UK: Oxford Polytechnic.

Gordon, S., & Nelson, S. (2006). Moving beyond the virtue script in nursing. In S. Nelson & S. Gordon (Eds.), The complexities of care: Nursing reconsidered (pp. 13–29). New York, NY: Cornell University Press.

Hanh, T. N. (1998). The heart of the Buddha’s teaching: Transforming suffering into peace, joy, and liberation. New York, NY: Broadway Books.

Institute of Medicine (IOM). (2000). To err is human: Building a safer health care system. Washington, DC: National Academy Press.

Institute of Medicine (IOM). (2003). Health professions education: A bridge to quality. Washington, DC: National Academies Press.

International Council of Nurses (ICN). (2012). The ICN code of ethics for nurses [PDF file]. Retrieved from http://ethics.iit.edu/ecodes/sites/default/files/Inter national%20Council%20of%20Nurses%20Code%20 of%20Ethics%20for%20Nurses.pdf

Jameton, A. (1984). Nursing practice: The ethical issues. Englewood Cliffs, NJ: Prentice-Hall.

Jonsen, A. R. (1998). The birth of bioethics. New York, NY: Oxford University Press.

Jonsen, A. R. (2000). A short history of medical ethics. New York, NY: Oxford University Press.

Jonsen, A. R. (2005). Bioethics beyond the headlines: Who lives? Who dies? Who decides? Lanham, MD: Rowman & Littlefield.

Jonsen, A. R., Siegler, M., & Winslade, W. J. (2010). Clinical ethics: A practical approach to ethical decisions in clinical medicine (7th ed.). New York, NY: McGraw-Hill.

Kelly, C. (2000). Nurses’ moral practice: Investing and discounting self. Indianapolis, IN: Sigma Theta Tau International Center Nursing Press.

Kidder, R. M. (1995). How good people make tough choices: Resolving the dilemmas of ethical living. New York, NY: Quill.

Lo, B. (2009). Resolving ethical dilemmas: A guide for clinicians (4th ed.). Philadelphia, PA: Wolters Kluwer.

MacIntyre, A. (1999). Dependent rational animals: Why human beings need the virtues. Chicago, IL: Open Court.

Mondics, C. (2004, July 23). 9/11 report details failure. The Sun Herald, pp. A1, A4.

Munhall, P. L. (2012). Nursing research: A qualitative per- spective (5th ed.). Burlington, MA: Jones & Bartlett Learning.

National Commission for the Protection of Human Sub- jects  of Biomedical and Behavioral Research, (1979). The Belmont report [PDF file]. Retrieved from https:// www.hhs.gov/ohrp/sites/default/files/the-belmont -report-508c_FINAL.pdf

Nozick, R. (1974). Anarchy, state, and utopia. New York, NY: Basic Books.

Omnibus Reconciliation Act of 1990 (OBRA-90), P.L. 105-108, advanced directives provisions, §§4206 & 4751 (1990).

Paul, R., & Elder, L. (2006). The miniature guide to critical thinking concepts and tools (4th ed.). Dillon Beach, CA: Foundation for Critical Thinking.

Pence, G. E. (2015). Medical ethics: Accounts of ground- breaking cases (7th ed.). New York, NY: McGraw-Hill.

57References

Pozgar, G. D. (2010). Legal and ethical issues for health professionals (2nd ed.). Sudbury, MA: Jones and Bartlett Publishers.

Rawls, J. (1971). A theory of justice. Cambridge, MA: Harvard University Press.

Ryan, C. J. (1998). Pulling up the runaway: The effect of new evidence on euthanasia’s slippery slope. Journal of Medical Ethics, 24, 341–344.

Schön, D. A. (1987). Educating the reflective practitioner. San Francisco, CA: Jossey-Bass.

Scott, S. D. (2011). The second victim phenomenon: A harsh reality of health care professions. Retrieved from https://psnet.ahrq.gov/perspectives/perspective/102 /the-second-victim-phenomenon-a-harsh-reality-of -health-care-professions

Scuderi, B. M. (2011, February 21). Placebos found to have posi- tive effects. Retrieved from https://www.thecrimson.com /article/2011/2/21/study-placebos-group-medicine/

Sheng-yen, M. (1999). Subtle wisdom: Understanding suffer- ing, cultivating compassion through Ch’an Buddhism. New York, NY: Doubleday.

Shotton, L., & Seedhouse, D. (1998). Practical dignity in caring. Nursing Ethics, 5(3), 246–255.

U.S. Department of Health and Human Services (HHS). (n.d.a). Special topics in health information privacy. Re trieved from https://www.hhs.gov/hipaa/for -professionals/special-topics/index.html

U.S. Department of Health and Human Services (HHS). (n.d.b). Summary of the HIPAA security rule:

Introduction. Retrieved from https://www.hhs.gov /hipaa/for-professionals/security/laws-regulations /index.html

U.S. Department of Health and Human Services (HHS). (n.d.c). Understanding health information privacy. Re- trieved from https://www.hhs.gov/hipaa/for-individuals /guidance-materials-for-consumers/index.html

U.S. Department of Health and Human Services (HHS). (2003). Summary of the HIPAA privacy rule. Retrieved from https://www.hhs.gov/sites/default/files/privacy summary.pdf ?language=es

U.S. Department of Health and Human Services (HHS). (2014). Key features of the Affordable Care Act. Retrieved from https://www.hhs.gov/healthcare/about -the-aca/index.html

Weston, A. (2011). A practical companion to ethics (4th ed.). New York, NY: Oxford University Press.

Winslow, G. (1988). From loyalty to advocacy: A new metaphor for nursing. In J. C. Callahan (Ed.), Ethical issues in professional life (pp. 95–105). New York, NY: Oxford University Press.

Wu, A. W. (2000). Medical error: The second victim, the doctor who makes the mistake needs help too. British Medical Journal, 320, 726–727.

Zaner, R. M. (1991). The phenomenon of trust and the patient-physician relationship. In E. D. Pellegrino, R. M. Veatch, & J. P. Langan (Eds.), Ethics, trust, and the professions: Philosophical and cultural aspects (pp. 45–67). Washington, DC: Georgetown University Press.

58 Chapter 2 Introduction to Bioethics and Ethical Decision Making

© Gajus/iStock/Getty Images

Ethics in Professional Nursing Practice Janie B. Butts

OBJECTIVES

After reading this chapter, the reader should be able to do the following:

1. Differentiate nursing ethics from medical ethics and bioethics. 2. Delineate key historical events that led to the development of the current codes of ethics for

the American Nurses Association (ANA) and International Council of Nurses (ICN). 3. Explore professional nursing boundaries and ways nurses cross those boundaries. 4. Review the concept of nursing as praxis. 5. Propose scenarios that require a stench test before the nurse can make an ethical decision. 6. Summarize the three major nursing ethical competencies: moral integrity, communication,

and concern. 7. Discriminate among the ethical competencies that comprise each major ethical competency:

(1) moral integrity: honesty, truthfulness and truthtelling, benevolence, wisdom, and moral courage; (2) communication: mindfulness and effective listening; and (3) concern: advocacy, power, and culturally sensitive care.

8. Contrast moral distress from moral integrity. 9. Recall ways to discern when a nurse fits Aristotle’s description of the truthful sort.

10. Define truthtelling in relation to three ethical frameworks: deontology, utilitarianism, and virtue ethics.

11. Examine the nursing ethical implications involved when a physician, through exercising therapeutic privilege, does not disclose the whole truth to a patient who is in the process of dying with cancer.

CHAPTER 3

(continues)

59

12. Create scenarios that would prompt a nurse to respond with moral courage. 13. Describe the connection in communication between mindfulness and effective

listening. 14. Relate patient advocacy, power, and the provision of culturally sensitive care to nurses’

everyday ethical work. 15. Characterize two types of relationships: the nurse–physician relationship and the nurse–nurse

relationship. 16. Explain how nurse recipients of horizontal violence progress to the walking wounded and then

transform to the wounded healer. 17. Evaluate nurses’ use of social networking in terms of the ANA guidelines for professional, ethical

conduct. 18. Imagine an incident of social media use in which a nurse violated the ANA Code of Ethics for

Nurses with Interpretive Statements.

OBJECTIVES (continued)

▸ Introduction to Nursing Ethics

Nursing professionals from the very early years constructed the meaning of nursing around ethics and ethical ways of caring, knowing, and acting. The meaning and scope of nursing ethics expanded as a result of unique nursing issues, but the road to a greater nursing voice has been difficult. Bioethical issues are rel- evant to nurses’ work in everyday practice, yet in matters of bioethics nurses are not always autonomous decision makers.

During the birth of bioethics from 1947 to the 1970s, nurses’ voices were left out of the dialogue of ethics. Complex ethical issues in medicine prompted in-depth medical ethics discourse among physicians, philosophers, and theologians. Pinch (2009) noted that

mainstream ethics was slow to recog- nize and include the voices of nurses as both scholars and practitioners who faced innumerable dilemmas in health care . . . [but] this lack of wide- spread acknowledgement did not

mean that the profession of nursing failed to address ethical issues in practice. (pp. 238–239)

Nurses began to place emphasis on par- ticular ethical issues that stemmed from com- plicated bioethics, such as pain and suffering, relationships, and advocacy. In fact, nurses led the way in the 1980s in conducting empir- ical research on ethical issues (Pinch, 2009). These initiatives strengthened nursing’s role in bioethics.

Today, nurses in all roles engage in ethical decision making and behaviors arising from morality, relationships, and conduct issues surrounding patient care and in relationships with each other and other healthcare profes- sionals. Some experts support the view that nursing ethics is distinctive from bioethics in other disciplines (Fry, Veatch, & Taylor, 2011; Holm, 2006; Volker, 2003; Wright & Brajtman, 2011). Additional views indicate everyday eth- ical practice in nursing as being situated within an interdisciplinary team.

Johnstone’s (2008) definition of nursing ethics is consistent with the perception of a strong connection between nursing ethics and

60 Chapter 3 Ethics in Professional Nursing Practice

nursing theory, which distinguishes nursing ethics from other areas of healthcare ethics. Johnstone (2008) defined nursing ethics as “the examination of all kinds of ethical and bioethical issues from the perspective of nurs- ing theory and practice, which in turn rest on the agreed core concepts of nursing, namely: person, culture, care, health, healing, environ- ment and nursing itself ” (p. 16).

The nursing profession embraces all the roles that characterize nursing whether or not in practice. Nursing ethics permeates all those nursing roles. Nurses’ professional relation- ships in patient care and within the healthcare team bring about ethical issues that are unique to nursing.

Effective praxis in nursing requires that nurses make morally good decisions, with indistinguishable means and ends to follow through with those decisions; nursing as praxis means ethics is embedded in prac- tice and all activities of nursing. For everyday ethical decision making in work roles, nurses should begin by first referring to the Code of Ethics for Nurses with Interpretive Statements

(American Nurses Association [ANA], 2015) as a nonnegotiable guide for ethics and then as needed, branching out for more support to other literature and experts on the topic. Tak- ing an ethical stance is always about justifying the chosen position by backing it up with sup- port from codes of ethics, moral experts, and the premium and original literature on eth- ical topics; this position is threaded through- out this text. Moral philosophers argue in a highly complex structure in venues such as moral philosophy articles or verbally for and against various issues. As nurses, it is not plausible to come to a strong, justified pos- ition about an ethical dilemma or issue with- out substantially more in-depth reading and wide-ranging consideration of the historical arguments within the moral philosophy and bioethical literature.

For good ethical decision making through praxis, nurses must be sensitive enough to recognize when they are facing seemingly ob- scure or uncomfortable ethical issues in every- day work. One such obscurity occurs when a nurse, such as a novice graduate, feels extreme

RESEARCH NOTE: LAABS’S STUDY ON NEW GRADUATES’ PERCEPTIONS OF MORAL INTEGRIT Y

In 2011 Laabs (2011) explored how newly graduated baccalaureate-prepared nurses perceive moral integrity and how prepared they feel to manage challenges. The new graduates described a person with moral integrity as a person practicing virtue ethics, “acting like, becoming, and being a certain kind of person who was honest, trustworthy, consistently doing and standing up for what is right, despite the consequences,” but paradoxically, they also perceived the expectations of administrators were for nurses “to set aside their values and beliefs and do what others ask, even if this would mean acting contrary to their conscience” (p. 431). These confounding statements form a level of dissonance, which leads to moral distress and burnout. The ethical challenge for new nurses is to learn how to maintain moral integrity and preserve mutual respect in an environment that trivializes and discounts nurses’ work as an important contribution to care. Nurses who act contrary to their own values and beliefs to do what another person asks of them without questioning are at risk of becoming morally desensitized to their own conscience. Some nurses actually begin to think they will never be the kind of ideal, moral nurse they aspired to be.

Data from Laabs, C. (2011). Perceptions of moral integrity: Contradictions in need of explanation. Nursing Ethics, 18(3), 431–440.

Introduction to Nursing Ethics 61

ETHICAL REFLEC TION

Kidder (1995) introduced nine checkpoints for ethical decision making. In his checkpoint for right versus wrong issues, he provided four ways for people to test for actions of wrongdoing. One way is the intuition test, also known as the stench test. Some actions or solutions do not pass a nurse’s stench test. Nurses should test the stench by first asking this question: Does the intended action have a smell of moral wrongdoing, such as feeling not quite right, feeling wrong or uncomfortable, having an air of corruption, or making one cringe? If the answer is yes, nurses probably should not engage in the action. Nurses will develop a more intense moral sensitivity when they regularly practice ways to test for wrongdoing by way of intuition, or the gut.

FOCUS FOR DEBATE: TESTING FOR STENCH—SHOULD YOU SET ASIDE YOUR OWN BELIEFS AND VALUES?

Form two groups for a live or online classroom. Each group will provide a stance to the following question: Should you set aside your own beliefs and moral integrity values to carry out an action requested by an administrator? Suppose a transporter and an EMT dropped an unconscious patient to the floor during a transfer back to the nursing home. Deb, a new registered nurse in charge of this patient’s care, witnessed the incident. A hospital nursing administrator under extreme pressure for meeting safety performance benchmarks asked the nurse not to document the patient fall or file an incident report.

In your opinion, does this request pass the stench test? There are definite safety implications in this scenario, but putting aside the legal aspect for a moment, consider the ethical issues of truth versus deception, truth to self versus loyalty to the organization, or promoting good versus doing harm.

■ One group will take the side favoring the nurse standing up for what she values as the moral and right thing to do, no matter what the outcome is.

■ The other group will take the side of the administrator.

The members of each group will discuss the ethical issues. Spokespersons for each group will present and argue the group’s position. The groups should constructively argue while discussing the ethical issues arising from the positions. Apply an ethical theory or framework for your justification. Get creative with your stance and rationale.

pressure to conform to a hospital administra- tor’s less than morally desirable decision over an action that would sustain the nurse’s own moral integrity.

▸ Professional Codes of Ethics in Nursing

Professional nursing education began in the 1800s in England at Florence Nightingale’s school with a focus on profession-shaping

ethical precepts and values. By the end of the 1800s, modern nursing had been established, and ethics was becoming a discussion topic in nursing. The Nightingale Pledge of 1893 was written under the chairmanship of a Detroit nursing school principal, Lystra Gretter, to establish nursing as an art and a science. Six years later, in 1899, the International Council of Nurses (ICN) established its own organiz- ation and was later a pioneer in developing a code of ethics for nurses.

At the turn of the 20th century, Isabel Hampton Robb, an American nurse leader,

62 Chapter 3 Ethics in Professional Nursing Practice

wrote the first book on nursing ethics, titled Nursing Ethics: For Hospital and Private Use (1900/1916). In Robb’s book, the titles of the chapters were descriptive of the times and moral milieu, such as the chapters titled “The Probationer,” “Uniform,” “Night-Duty,” and “The Care of the Patient,” which addressed nurse–physician, nurse–nurse, and nurse– public relationships.

The emphasis in the code was initially on physicians because male physicians usu- ally trained nurses in the Nightingale era. Nurses’ technical training and obedience to physicians remained at the forefront of nursing responsibilities into the 1960s. For example, the ICN Code of Ethics for Nurses reflected technical training and obedience to physicians as late as 1965. By 1973, the ICN code shifted from a focus on obedience to physicians to a focus on patient needs, where it remains to this day.

ANA Code of Ethics for Nurses In 1926 the American Journal of Nursing (AJN) published “A Suggested Code” by the ANA, but the code was never adopted. In 1940, AJN published “A Tentative Code,” but again it was never adopted (Davis, Fowler, & Aroskar, 2010). The ANA adopted its first official code in 1950. Three more code revisions occurred before the creation of the interpretative state- ments in 1976. The ANA added the word eth­ ics to the publication of the 2001 code. The seventh edition, published in 2015, is the latest revision.

The ANA outlined nine nonnegotiable provisions, each with interpretive statements for illustration of detailed narratives for eth- ical decision making in clinical practice, education, research, administration, and self-development. Deontology and norma- tive ethics largely serve as the basis for the code. Although they are detailed enough to guide decision making on a wide range of topics, the interpretive statements are not in- clusive enough to predict every single ethical

decision or action in the process of nurses carrying out their roles. A clear patient fo- cus in the code obliges nurses to remain at- tentive and loyal to all patients in their care, but nurses must also be watchful for ethical issues and conflicts of interest that could lead to potentially negative decisions in care and relationships with patients. Politics in institutions and cost-cutting strategic plans are among other negative forces in today’s environment.

The ANA (2015) explored a variety of topics in the code: (1) respect for auton- omy, (2) relationships, (3) patients’ interests, (4) collaboration, (5) privacy, (6) competent practice, (7) accountability and delegation, (8) self- preservation, (9) environment and moral obligation, (10) contributions to the nursing profession, (11) human rights, and (12) articulation of professional codes by or- ganizations. The interpretative statements illustrate many moral situations. For example, Provision 6 illustrates wisdom, honesty, and courage as essential virtues to produce an image of a morally good nurse. When these

ETHICAL REFLEC TION: CODE OF ETHICS APPLICATION

■ In the Code of Ethics for Nurses with Interpretive Statements, the ANA (2015) currently emphasizes the word patient instead of the word client in referring to recipients of nursing care. Do you agree? Please explain your rationale.

■ Take a few minutes to review a copy of the ANA Code of Ethics for Nurses with Interpretive Statements.

■ After reviewing the interpretive statements in the code, create and discuss some random, brief ethical issues on how nurses justify their actions using the following bioethical principles: autonomy, beneficence, nonmaleficence, and justice.

Professional Codes of Ethics in Nursing 63

virtues are habitually practiced, they promote the values of human dignity, well-being, re- spect, health, and independence. These values reflect what is important for the nurse personally and for patients. Notable in the code is the reference to moral respect for all human beings, including the respect of nurses for themselves.

Another feature of the code is the empha- sis on wholeness of character and preservation of self-integrity. Wholeness of character relates to nurses’ professional relationships with patients and a recognition of the val- ues within the nursing profession, one’s own authentic moral values, integration of these belief systems, and expressing them appro- priately. Personal integrity involves nurses’ extending attention and care to their own requisite needs. Many times, nurses who do not regard themselves as worthy of care can- not give comprehensive care to others. Recog- nizing the dignity of oneself and each patient is essential to providing a morally enhanced level of care.

ICN Code of Ethics for Nurses In 1953 the ICN adopted its first code of eth- ics for nurses (see Appendix B for the 2012 ICN Code of Ethics for Nurses). The multiple revisions illustrate that the code is a globally accepted document for ethical practice in nursing. Since 1953, nurses in many coun- tries have adapted the ICN code. The funda- mental responsibilities of promoting health, preventing illness, restoring health, and al- leviating suffering emanate from the role of nursing. The code serves as an action-based standard of conduct related to four key ele- ments: nurses and people, nurses and prac- tice, nurses and the profession, and nurses and coworkers. Similar to the ANA code, the elements in the ICN code form a de- ontological, normative ethics framework for

nurses to internalize before using it as a guide for nursing conduct in practice, education, research, and leadership.

Common Threads Between the ANA and ICN Codes Common threads exist between the nine pro- visions of the ANA code (2015) and the four elements of the ICN code (2012). The codes, which apply to all nurses in all settings and roles, are nonnegotiable, ethical nursing stan- dards with a focus on social values, people, relationships, and professional ideals. Both codes share values such as respect, privacy, equality, and advocacy.

Nurses should protect the moral space in which patients receive care and uphold the agreement with patients on an individ- ual and collective basis. Protecting the moral space of patients necessitates that nurses provide compassionate care by endorsing the principles of autonomy, beneficence, non- maleficence, and justice. Within the codes, nursing responsibilities include promoting and restoring health and preventing illness, but a significant emphasis is alleviating suf- fering of patients who experience varying degrees of physical, psychological, and spir- itual suffering.

Professional Boundaries in Nursing Professional, ethical codes serve as useful, sys- tematic, normative guidelines for directing and shaping behavior. The ANA and ICN codes apply to all nurses regardless of their roles, al- though no code can provide a complete and absolute set of rules free of conflict and ambi- guity, which is a rationale often cited in favor of the use of virtue ethics as a better approach to ethics (Beauchamp & Childress, 2012).

64 Chapter 3 Ethics in Professional Nursing Practice

Some people believe that nurses who are without a virtuous character cannot be de- pended on to act in good or moral ways, even with a professional code as a guide. In the 30th anniversary issue of the Journal of Advanced Nursing, the editors reprinted a 1996 article by Esterhuizen (2006), titled “Is the Professional Code Still the Cornerstone of Clinical Nurs- ing Practice?”, and the journal solicited comments from three contributors for the reprinted article. This information is most relevant today. One respondent, Tschudin (2006), agreed with Esterhuizen that nurses lack opportunities for full autonomy in moral decision making. Nurses have abun- dant ground to engage in moral decisions, but they still do not have enough opportun- ity to participate. In the current, uncertain moral landscape, nurses often wonder about the benefit of codes of ethics. Tschudin’s key message was that when virtuous nurses ex- perience full autonomy and accountability, they have an internal moral compass to guide their practice and do not necessarily need a code of ethics for guidance.

However one perceives the value of codes of ethics for nurses, they still serve as man- dates for accountability in all roles of nurs- ing, whether or not in practice. Professional boundaries are limits that protect the space between the nurse’s professional power and the patient’s vulnerabilities. Boundaries facilitate a safe connection because they give each person in the relationship a sense of legitimate con- trol, whether the relationships are between a nurse and a patient, a nurse and a physician, a nurse and an administrator, or a nurse and a nurse. The National Council of State Boards of Nursing (NCSBN, 2011a) explained the power of a nurse as follows:

The power of the nurse comes from the professional position, the access to private knowledge about the patient

and the patient’s need for care. Estab- lishing boundaries allows the nurse to control this power differential and allows for a safe interaction to best meet the patient’s needs. (para. 2)

The blurring of boundaries between per- sons in a relationship is often subtle and un- recognizable at first. Even so, two distinct types of departures from professional boundaries occur. The first type of departure is bound- ary violations, which are actions that do not promote the best interest of another person in a relationship and pose a potential risk, harm, or exploitation to another person in the re- lationship. Boundary violations widely vary, from misuse of power, betrayal of trust, disre- spect, and personal disclosure to more severe forms, such as sexual misconduct and exploit- ation. The second type of departure, bound- ary crossings, is a lesser and more short-lived type that accidentally or intentionally occurs during normal nursing interventions and will not necessarily happen again. The ANA (2015) included numerous boundary issues in its code of ethics. Social media boundary issues are presented later in this chapter in the sec- tion on social media.

The obvious question is how nurses know when they have crossed a professional bound- ary. In 2003, Maes asked oncology nurses this question. Years later, some of their responses are still relevant for today’s nurses. Maes ob- served the line in the sand is blurry.

In addition to the ethical guidelines in the code of ethics, nurses also must follow the board of nursing’s legal regulations and standards for practice in his or her state of residence. Every country has its own code of  ethics, and each state and country has a set of legal rules and regulations for nurs- ing practice. Each state board of nursing is “responsible for enforcing the nurse prac- tice act to promote safe and competent care”

Professional Codes of Ethics in Nursing 65

(NCSBN, 2011c, p. 2). Violations can result in voluntary surrender, suspension, or revoca- tion of a nurse’s license and prohibition from practice. The boards of nursing function not to protect nurses but to protect the public and ensure safe and competent patient care. Refer to state boards of nursing websites for examples of how boundary violations result in the suspension or revocation of a nurse’s license.

The ANA Code of Ethics for Nurses with Interpretative Statements (2015) specified pro- fessional boundaries and moral obligations for clinical practice. Moral obligations include (1) respecting patients’ dignity, (2) right to self-determination, (3) delegating tasks ap- propriately, (4) practicing good judgment, (5) accepting accountability in practice, (6) alle- viating suffering, (7) being attentive to patients’ interests, and (8) working with the nurse practice acts and nursing standards of prac- tice. Professional practice boundaries include (1) maintaining authenticity in all relationships with others, such as nurse–nurse relationships, nurse– physician relationships, nurse–patient relationships, and multidisciplinary collab- oration, and (2) addressing and evaluating issues of impaired practice; fraternizing inap- propriately with patients or others; accepting inappropriate gifts from patients and families; confidentiality and privacy violations; and unhealthy, unsafe, illegal, or unethical envi- ronments. In the Code, the ANA (2015) also offered self-care and self-development bound- aries and obligations.

Legal suits are less likely to be filed if pa- tients distinguish nurses as caring, compas- sionate, kind, and respectful (Diemert, 2012). If patients or families file legal suits of negli- gence or malpractice in a civil court against a nurse, the plaintiff ’s lawyer must prove injury or harm to the plaintiff as a result of the nurse’s negligence or malpractice. Negligence is fail- ure of the nurse to give care as a reasonably prudent and careful person would give under

similar circumstances. Malpractice is im- proper or unethical conduct or unreasonable lack of skill by a nurse or other professional that results in damages.

ETHICAL REFLEC TION: HOW DO NURSES KNOW WHEN THEY HAVE CROSSED A PROFESSIONAL BOUNDARY?

Maes (2003) interviewed several oncology nurses to ask them how they know when they have crossed a professional boundary. Their comments are provided in the following list. All of these nurses discussed the difficulty of trying not to cross boundaries.

■ Emily Stacy, a hospice nurse, stated, “One danger sign could be when you ‘dump’ your own problems and stressors on patients or their family members because you feel close to them” (p. 4).

■ Jane Hawksley, a nurse manager, added, “New nurses have not developed their own boundaries yet; this can lead to a slippery slope of sympathy versus empathy, making crossing the line easy to do. Usually, the red flag is there . . . [so] be aware of your internal responses, and if in doubt at all, check it out because these responses are a red flag that need to be understood” (pp. 5–6).

■ Barb Henry, a psychiatric nurse practitioner, provided a description of dumping problems on patients: “My job is to help patients deal with their ‘black clouds.’ On one visit, I was carrying around my own black cloud and was really focused on it. The patient innocently asked me a question related to the issue, and I ended up sharing my black cloud. . . . The boundary line is difficult to maintain” (pp. 4–5).

Reproduced from Maes, S. (2003). How do you know when professional boundaries have been crossed? Oncology Nursing Society, 18(8), 3–5.

66 Chapter 3 Ethics in Professional Nursing Practice

of being, acting like, and becoming a certain kind of person. This person is honest, trust- worthy, consistently doing the right thing and  standing up for what is right despite the consequences” (p. 433).

Features of moral integrity include good character, intent, and performance. Said an- other way, nurses of good character consist- ently use their intellectual ability and moral

LEGAL PERSPEC TIVE: CATEGORIES OF NEGLIGENCE THAT LEAD TO MALPRAC TICE LAWSUITS

Nurses increasingly are named defendants in malpractice lawsuits. From 1998 to 2001, the number of payments for nursing malpractice lawsuits increased from 253 to 413. Even though nursing educators have made strides in educating nursing students about legal responsibilities, safe care and actions, and limitations, Croke (2003) argued there are no signs of a decrease in malpractice suits because of numerous factors, including the following: (1) delegating too much and inappropriately, (2) discharging patients too soon, (3) nursing shortages and hospital downsizing, (4) increasing responsibility and autonomy of nurses, and (5) patients being more informed and families having higher expectations for safe care.

In an analysis of legal cases between 1995 and 2001, Croke outlined six categories of nursing negligence that result in malpractice suits:

■ Failure to follow standards of care ■ Failure to use equipment in a responsible

manner ■ Failure to communicate ■ Failure to document ■ Failure to assess and monitor ■ Failure to act as a patient advocate

Data from Croke, E. M. (2003). Nurses, negligence, and malpractice: Continuing education. American Journal of Nursing, 103(9), 54–63.

▸ Ideal Nursing Ethical Competencies

The ethical competencies identified in this section tend to be interrelated in meaning, yet each competency has a degree of distinc- tiveness. Together, they characterize a well- defined, ideal nurse. This section comprises 13 competencies divided into 3 major categories: (1) moral integrity: honesty, truthfulness and truthtelling, benevolence, wisdom, and moral courage; (2) communication: mindfulness and effective listening; and (3) concern: advocacy, power, and culturally sensitive care.

Moral Integrity The foremost ethical competency is moral integrity, a virtue often considered the fiber of all other virtues. Most of the time when people speak of a person’s moral integrity, they are referring to the quality and wholeness of character, which is why some people believe moral integrity is necessary to realize full hu- man flourishing. Plante (2004) stated that al- though no one is mistake free, people with moral integrity follow a moral compass and usually do not vary by appeals to act immor- ally. A person with moral integrity manifests a number of virtues. Presented in this section are five of those virtues: honesty, truthfulness and truthtelling, benevolence, wisdom, and moral courage. Moral distress is also presented in this section, not as a virtue, but as a problem related to nurses feeling constrained by their workplace to follow a path of moral integrity in their actions.

People with moral integrity pursue a moral purpose in life, understand their moral obligations in the community, and are com- mitted to following through regardless of con- straints imposed on them by their workplace policies. In Laabs’s (2011) qualitative study, nurses described moral integrity as a “state

Ideal Nursing Ethical Competencies 67

propensity accompanied by pragmatic appli- cation to execute good and right actions.

Moral Distress Nurses’ work involves hard moral choices that sometimes cause moral distress, resulting in emotional and physical suffering, painful am- biguity, contradiction, frustration, anger, guilt, and an avoidance of patients. Moral distress occurs when nurses experience varying de- grees of compromised moral integrity. Jameton (1984) popularized and defined the term moral distress as being “when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action” (p. 6). Since Jameton’s initial work, authors have continued to research and develop the conception of moral distress.

Nurses are susceptible to moral distress when they feel pressure to do something that conflicts with their values, such as falsifying records, deceiving patients, or being subjected to verbal abuse from others. Moral distress, which is an internal experience that is the op- posite of feelings associated with a sense of moral integrity, occurs when nurses or other healthcare professionals have multiple or dual expectations and cannot act according to their proclivity toward moral integrity. When a sit- uation forces nurses to make a decision that compromises their moral integrity, the deci- sion, in the end, may or may not have inter- fered with their ethical stance and structure.

Many times, nurses’ moral distress stems from system demands on them to act against their moral integrity. In a healthcare system that is often burdened with constraints of pol- itics, self-serving groups or interests, and or- ganizational bureaucracy, threats to moral integrity can be a serious pitfall for nurses. Research indicates that these environments have a strong effect on the degree of nurses’ moral distress (Redman & Fry, 2000). Numer- ous scholars have linked moral distress to in- competent or poor care, unsafe or inadequate staffing, overwork, cost constraints, ineffective

policy, futile care, unsuccessful advocacy, the current definition of brain death, objectifica- tion of patients, and unrealistic hope (Corley, 2002; Corley, Minick, Elswick, & Jacobs, 2005; McCue, 2011; Pendry, 2007; Schluter, Winch, Holzhauser, & Henderson, 2008).

Leaders of nursing continue to search for strategies to reduce moral distress and promote healthy work environments. The American Association of Critical-Care Nurses (AACN, 2008) published a position statement to accentuate the seriousness of moral distress in nursing:

Moral distress is a critical, frequently ignored, problem in health care work environments. Unaddressed it restricts nurses’ ability to provide optimal patient care and to find job satisfaction. AACN asserts that every nurse and every employer are responsible for implementing pro- grams to address and mitigate the harmful effects of moral distress in the pursuit of creating a healthy work environment. (p. 1)

Four years earlier, the AACN ethics work group developed a call-to-action plan, ti- tled “The 4A’s to Rise Above Moral Distress” (2004). Nurses use the 4A’s plan as a guide to identify and analyze moral distress:

■ Ask appropriate questions to become aware that moral distress is present.

■ Affirm your distress and commitment to take care of yourself and address moral distress.

■ Assess sources of your moral distress to prepare for an action plan.

■ Act to implement strategies for changes to preserve your integrity and authenticity.

Preventing moral distress requires nurses to recognize the at-risk dynamics and issues. An environment of good communication and respect for others is essential for decreasing the likelihood of experiencing moral distress.

68 Chapter 3 Ethics in Professional Nursing Practice

Honesty A virtue of moral integrity is the ethical compe- tency of honesty. In the 2013 Gallup poll, as in other years, nurses were rated as the most hon- est and ethical healthcare professionals, except in 2001 (as cited in Brennan, 2017). Nurses have earned this trust because of their commitment and loyalty to their patients. According to Laabs (2011), nurses identify honesty as important for three reasons: (1) honesty is a prerequisite for good care, (2) dishonesty is always exposed in the end, and (3) nurses are expected to be honest.

In a phenomenological study of nurses on honesty in palliative care, nurses sometimes had difficulty defining honesty (Erichsen, Danielsson, & Friedrichsen, 2010). In an at- tempt to clarify their perceptions of honesty, they often defined lying or dishonesty as being sharp contrasts to honesty. Nurses perceived honesty as a virtue related to facts, metaphors, ethics, and communication and truthtelling as a palpable feature in trusting relationships.

Honesty, in simple terms, is being “real, genuine, authentic, and bona fide” (Bennett, 1993, p. 597). Honesty is more than just telling the truth; it is the substance of human relation- ships. Honesty in relationships equips people with the ability to place emphasis on resolve and action to achieve a just society. People with a mature level of honesty dig for truth in a rational, methodical, and diligent way while placing bits of truths into perspective and pru- dently searching for the missing truths before addressing the issue. In other words, honesty is a well-thought-out and well-rehearsed behav- ior that represents commitment and integrity.

There are many ways that nurses portray honesty, such as staying true to their word. Nurses must stay committed to their promises to patients and follow through with appropri- ate behaviors, such as returning to patients’ hospital rooms as promised to help them with certain tasks. If nurses do not follow through with their commitments, trust may be broken, and patients potentially will see those nurses as dishonest or untrustworthy.

Honesty is also about being honest with one’s self. Nurses need to establish a routine checkpoint system of ongoing self-evaluation to retain and improve honesty in actions and relationships with patients and others. For ex- ample, if a nurse is in the process of admin- istering medications and a pill falls on the hospital floor, would the nurse be justified in wiping it off and placing it back in the cup if no one was there to see the action? Nurses might be tempted to wipe off the pill and administer it just to keep from completing a required form for a replacement medication, but if nurses evaluate their situations and make decisions based on always being honest with oneself, it is more likely they will make rational, trustworthy decisions regarding the care of patients.

Truthfulness and Truthtelling The next virtue of moral integrity is the eth- ical competency of truthfulness. Aristotle identified 12 excellences of character, or vir- tues, in his book Nicomachean Ethics (Rowe & Broadie, 2002). A virtue is an intermediate state between two extremes: excessiveness and defi- ciency. Truthfulness, then, is the intermediate state between imposture (excessiveness) and self-deprecation (deficiency). Truthfulness is being genuine in all words and deeds and is never false or phony. A truthful person speaks in a way that symbolizes who the person really is. Aristotle explained his view of a truthful person as being the truthful sort.

Based on the principle of veracity, truth- fulness is what we say and how we say it. Truthfulness, translated to truthtelling in the healthcare environment, means nurses are usually ethically obligated to tell the truth and are not intentionally to deceive or mislead pa- tients, which relates to the authentic, not fake, person in the context of Aristotle’s truthful sort. Because of the emphasis in the Western world on patients’ right to know about their personal health care, truthtelling has become the basis for most relationships between

Ideal Nursing Ethical Competencies 69

healthcare professionals and patients (Beau- champ & Childress, 2012). In the older, trad- itional approach, disclosure or truthtelling was a beneficent or paternalistic approach with actions based on answers to questions such as “What is best for my patient to know?”

Today, the ethical question to ask is “Are there ever circumstances when nurses should be morally excused from telling the truth to their patients?” The levels of disclosure in health care and the cultural viewpoints on truthtelling create too much fogginess for a clear line of distinction between nurses tell- ing or not telling the truth. The ANA Code of Ethics for Nurses with Interpretive Statements (2015) obligates nurses to be honest in matters involving patients and themselves and to ex- press a moral point of view when they are alert to any unethical practices.

In some Western cultures, such as in the United States, autonomy is so valued that with- holding information is unacceptable. Under this same autonomy principle, it is assumed patients also have a right not to know their medical history if they so desire. Some cul- tures, such as those in some Eastern countries, do not prize autonomy in this way; the head of the family or the elders usually decide how much and what information needs to be dis- closed to the family member as patient.

Withholding Information from Patients. The current American Medical Association’s (AMA) Code of Medical Ethics view is in Opinion 2.1.3, “Withholding Information from Patients” (2018). This opinion is different from the AMA’s 2006 Opinion 8.082 on the definition of withholding information from patients, which is often referred to as therapeutic privilege (AMA, 2012). In the current opinion, the AMA emphasized that withholding information without the patient’s knowledge or consent is ethically unacceptable except in emergency situations when the patient is unable to make an informed decision. Once the emergency is over, the AMA emphasized the importance of disclosure to the patient.

Working within this opinion enables physicians to disclose truthful information, but when necessary, they may disclose small portions of truthful information to patients over time until all of the information has been disclosed.

Physicians and nurses are obliged to com- municate truthfully in a manner that preserves the patient’s respect for autonomy. Physicians and nurses should base their opinion on the facts gathered from the patient’s records and their interactions with the patient, family, and other healthcare professionals. Truthtelling by physicians and nurses is beneficial for patients, especially when they are in advanced stages of a diagnosis (Loprinzi et al., 2010). With the full knowledge of the disease process, patients will make fully informed decisions, be prepared for the outcomes, have more meaningful dialogue with family members, and make the most of meaningful events during their remaining life. Nurses have a difficult decision to make, es- pecially when a patient wants to know the full truth and physicians have found it necessary to disclose portions of the truth over a span of time. Nurses must evaluate each situation carefully with wisdom and contemplation to develop a clear understanding of the trans- pired communication between the physician, patient, and family members.

An excellent example of truthtelling is from the play Wit by Margaret Edson, winner of the 1998 Pulitzer Prize. The play was pub- lished as a book in 1999 and then made into an HBO Home Movie in 2001; it is available for purchase. Susie Monahan, the registered nurse caring for Vivian Bearing, decided to tell the truth to and be forthright with a patient de- spite a few physicians who chose not to do so.

Benevolence The ethical competency of benevolence is an- other virtue of moral integrity. Benevolence is a “morally valuable character trait—or virtue—of being disposed to act to benefit others” (Beauchamp, 2013, Part 1, para. 2). Some people believe benevolence surpasses the act

70 Chapter 3 Ethics in Professional Nursing Practice

ETHICAL REFLEC TION: A WOMAN WITH UTERINE CANCER

You are the nurse caring for a woman scheduled for a hysterectomy because of uterine cancer. The community knows her surgeon as having a bad surgical record in general but especially in performing hysterectomies. The woman previously heard gossip to this effect and asks you about it before her surgery because she is apprehensive about using the surgeon. You know at least one legal suit has been filed against him because you personally know the woman involved in a case of a botched hysterectomy.

Your choices are as follows: (1) you could be brutally honest and truthful with your preoperative patient, (2) you could be part truthful by giving her correct information on certain pieces of the gossip to clarify misconceptions but remaining silent on other parts of the gossip you know could be damaging, or (3) you could be totally untruthful by remaining silent or telling her you have heard nothing.

■ Discuss these options and any other ideas you may have regarding this case. As a nurse who wants to be committed to an ethical nursing practice, what actions might you consider in this difficult circumstance? Be as objective as possible.

■ Now that you have determined possible actions, please justify these actions by applying either Kant’s deontological theory, utilitarian theory, or a virtue ethics approach.

■ Describe the major differences and any similarities among these three frameworks (deontology, utilitarianism, and virtue ethics).

■ Other than simply telling the truth verbally to patients and others, how else can you display your honesty and truthful sort in ethical nursing practice? Imagine how you would portray honesty in different settings and situations, such as patient care and family relationships, documentation, safe care, and relationships with coworkers and administrators, while taking into consideration the moral obligations delineated in the ANA Code of Ethics for Nurses with Interpretive Statements.

of compassion. Confucianists place a high priority on human character, or virtuous con- duct. They view benevolence as the highest- ranking, perfect virtue with the greatest de- gree of influence; the ideal morality is for benevolence to prevail in the world (Hwang, 2001). Altruistic, kindhearted, caring, cour- teous, and warmhearted are characterizations of a benevolent person; also, in definitions of compassionate care, kindness and benevo- lence, among other descriptors, are common.

The bioethical principle of beneficence and the virtue of benevolence are similar, but they are not necessarily connected. Benevo- lence refers to the propensity and desire to act to benefit others, which often prompts benefi- cent acts. Throughout nursing’s history, nurses have placed a high importance on benevolence, or kindness. Pearce (1975), a past nursing tu- tor and author of the 1937 edition and many

subsequent editions of A General Textbook of Nursing, described a benevolent scenario:

Nurses soon learn to realize the value of a pleasing professional approach and the occasional glance in passing, nod of the head or smile takes no time and makes a valuable contribution to good relationships. Communication need not always be verbal, and the nurse by the exercise of her skills can convey sympathy and assurance to a patient who may be too weary or ill to listen to much conversation. (p. 4)

More than 20 years ago but still relevant today, Lutzén and Nordin (1993) found in their research that nurses described benevo- lence as a central motivating factor in nursing decision making and actions.

Ideal Nursing Ethical Competencies 71

ETHICAL REFLEC TION: A CASE OF TRUTHTELLING

Susie Monahan, in the book and movie Wit, was a registered nurse caring for Vivian Bearing, a patient who was dying of cancer, at a large research hospital. Vivian was getting large doses of cancer chemotherapy without any success of remission. In fact, the cancer was progressing at an alarming rate. She was near death, but the research physicians wanted to challenge her body with chemotherapy for as long as possible to observe the outcome effects. Everyone on the staff had been cold, indifferent, and technically minded, and no one had shown any concern for Vivian except for Susie. Vivian had not been informed about the chemotherapy failure, her prognosis, or the likelihood of her dying. One night, Susie found Vivian crying and in a state of panic. Susie first helped to calm her, and then she shared a popsicle with Vivian at the bedside while she disclosed the full truth to Vivian about her chemotherapy, her prognosis, her choices between Code Blue or DNR, and her imminent death. Susie affectionately explained,

You can be “full code,” which means that if your heart stops, they’ll call a Code Blue and the code team will come and resuscitate you and take you to Intensive Care until you stabilize again. Or you can be “Do Not Resuscitate,” so if your heart stops we’ll . . . well, we’ll just let it. You’ll be “NR.” You can think about it, but I wanted to present both choices. (Edson, 1999, p. 67)

Susie felt an urge to be truthful and honest. By demonstrating respect for Vivian, Susie was showing her capacity to be human.

Data from Edson, M. (1999). Wit. New York, NY: Faber & Faber.

RESEARCH NOTE: BENEVOLENCE AS A CENTRAL MORAL CONCEPT—A GROUNDED THEORY APPROACH TO RESEARCH

Lutzén and Nordin (1993) used a grounded theory research design to explore moral decision making in psychiatric nursing practice. Fourteen seasoned nurses from Sweden participated in the study by way of interviews. After transcribing and coding the data into several categories, Lutzén and Nordin discovered that benevolence was a category with important merit because nurses characterized it as a central motivating factor for making everyday decisions with and for the patients. The researchers placed descriptions such as “have always loved other people,” “being close to,” and “being really close to a patient, to share his sorrow” within the category of benevolence.

Data from Lutzén, K., & Nordin, C. (1993). Benevolence, a central moral concept derived from a grounded theory study of nursing decision making in psychiatric settings. Journal of Advanced Nursing, 18, 1106–1111.

The foundational concepts of nursing include doing good, promoting acts to bene- fit others, and preventing harm or doing no harm. Nurses who use benevolence as a central motivating factor do not just perform acts of kindness in a haphazard fashion when the op- portunity arises; they seek out ways to perform acts of kindness rather than only recognizing ways to do good.

Wisdom Another virtue of moral integrity is the ethical competence of wisdom, often called practical wisdom, and it requires calculated intellectual ability, contemplation, deliberation, and efforts to achieve a worthy goal. Aristotle believed wisdom is an excellence of genuine quality that develops with intellectual accomplishment,

72 Chapter 3 Ethics in Professional Nursing Practice

or sophia, and practical expertise, or phronesis (Broadie, 2002). People are said to be wise if they successfully calculate ways to reach a wor- thy goal or end. The ultimate goal of happiness comes only from exercising rational and intel- lectual thinking, which is a product of wisdom and contemplation. Aristotle considered good deliberation as a necessary, mindful process to- ward reaching a worthy end or goal. He said, “So in fact the description ‘wise’ belongs in general to the person who is good at deliberation.  .  .  . Nobody deliberates about what things cannot be otherwise, or about things he has no possi- bility of doing” (Rowe & Broadie, 2002, p. 180).

Aristotle’s viewpoint, in summary, is people cannot achieve their worthy goals or ends or be considered wise unless they develop both fea- tures that compose the virtue of wisdom, and then, only through a significant amount of delib- eration and contemplation. As previously stated, the two features of wisdom are intellectual ac- complishment and practical expertise.

Aristotle’s conception of wisdom fits with nursing and medical practice. Pellegrino and Thomasma (1993), who were both prototyp- ical medical philosophers, cited phronesis (practical wisdom) as medicine’s indispensable virtue, and they also discussed the virtue of prudence (wisdom) as a necessary extension to phronesis in order to help people “discern, at this moment, in this situation, what action, given the uncertainties of human cognition, will most closely approximate the right and the good” (p. 85).

People with prudence have the feature of intellectual accomplishment and the pro- clivity to seek the right and the good. Nurses must also develop this combination. Clinical wisdom is sometimes cited to describe the necessary combination of prudence and prac- tical wisdom. Benner, Hooper-Kyriakidis, and Stannard (1999) described this type of connection as clinical judgment and clinical comportment, both of which require nurses to continually reflect upon the present situa- tion in terms of the “immediate past condition of the patient” (p. 10). Clinical judgment and

clinical comportment encompass six areas that serve as a guide for active reflection in nursing practice: “(1) reasoning-in-transition; (2) skilled know-how; (3) response-based practice; (4) agency; (5) perceptual acuity and the skill of involvement; and (6) the links be- tween clinical and ethical reasoning” (p. 10).

Moral Courage The next virtue of moral integrity is the ethical competence of moral courage, which is highly valued and seems to be inherent in nursing. Nurses with moral courage stand up for or act upon ethical principles to do what is right, even when those actions entail constraints or forces to do otherwise. Moral courage turns into noticeable actions. If nurses have the cour- age to do what they believe is the right thing in a particular situation, they make a personal sacrifice by possibly standing alone, but they will feel a sense of peace in their decision. If nurses are in risky ethical situations, they need moral courage to act according to their core values, beliefs, or moral conscience. For nurses to act with moral courage means they choose the ethically right decision, even when under intense pressure by administrators, coworkers, and physicians. Refer to the boxes in the first few pages of this chapter to imagine ways that nurses could practice moral courage.

Over the past several years, Lachman has published several articles on the topic of moral courage. In 2010, she reviewed the nurse’s obligations and moral courage in terms of do-not-resuscitate (DNR) orders for end- of-life decision making while considering the research by Sulmasy, He, McAuley, and Ury (2008) on beliefs and attitudes of nurses and physicians about DNR orders. Because nurses have a very close proximity to patients, they need active involvement in decision making for end-of-life decisions, such as DNR orders (Lachman, 2010). In 2012, the ANA published a new position statement to reiterate the im- portance of nurses’ involvement in patients’ end-of-life decisions and DNR orders.

Ideal Nursing Ethical Competencies 73

Nurses often feel apprehensive regarding uncertainty in outcomes, even when they have a high degree of certainty that they are doing the right thing. Other than end-of-life decision making, other examples of having moral cour- age are as follows: (1) confronting or reporting a peer who is stealing and using drugs at work;

RESEARCH NOTE: NURSES AND PHYSICIANS ON DNR ORDERS

Sulmasy et al. (2008) surveyed more than 500 medical house staff, medical internists, and staff nurses working on medical units at teaching hospitals in the New York City area to examine and compare (1) their beliefs, attitudes, and confidence about DNR orders; (2) the role of nurses in discussions with patients and families about DNR orders; and (3) perceived confidence level in their ability to discuss DNR orders with patients and families. As of 2008, the small number of studies on this topic revealed that nurses play an important role in discussions with patients and families regarding DNR orders but, in reality, physicians are largely the ones who initiate and discuss DNR orders with patients and families. Nurses often view themselves as responsible yet powerless and uncertain about discussions with patients and families (Stenburg, 1988, as cited in Sulmasy et al., 2008). Sulmasy and colleagues’ comparison findings among three groups about their roles in DNR orders indicated the following:

■ Nurses found it less difficult, but more rewarding, than the two groups of physicians to discuss DNR orders with patients and families.

■ Nurses reported they were not consulted very often about the evolvement of the process of end-of-life patient decisions and DNR orders.

■ Nurses reported a more positive attitude about DNR discussions than did the two groups of physicians.

■ Nurses were much more likely to believe it was not their place to recommend or initiate DNR orders than did the two groups of physicians.

Sulmasy and colleagues posed some ethical questions for reflection: (1) Why are staff nurses not permitted, most of the time, to initiate DNR orders? (2) What is the proper division and line of responsibilities between physicians and nurses in the care of patients during the end-of-life process? (3) What policy on responsibilities of DNR orders would best benefit patients and families?

Data from Sulmasy, D. P., He, M. K., McAuley, R., & Ury, W. A. (2008). Beliefs and attitudes of nurses and physicians about do not resuscitate orders and who should speak to patients and families about them. Critical Care Medicine, 36(6), 1817–1822.

RESEARCH NOTE: MORAL COURAGE IN UNDERGRADUATE NURSING STUDENTS

In a qualitative approach, Bickoff, Sinclair, and Levett-Jones (2017) reviewed 15 research papers to explore factors that facilitated or inhibited undergraduate nursing students’ decisions to exhibit moral courage by speaking up or intervening when they encountered poor practice. The researchers found that undergraduate nursing students understand their moral obligation but they often do not speak up or intervene when they see poor practice. Instead, many keep quiet and become bystanders, or they are active participants only to a degree.

Data from Bickoff, L., Sinclair, P. M., & Levett-Jones, T. (2017). Moral courage in undergraduate nursing students: A literature review. Collegian, 24, 71–83.

(2) confronting a physician who ordered ques- tionable treatments not within the reasonable standard of care; (3) confronting an admin- istrator regarding unsafe practices or staffing patterns; (4) standing against peers who are planning an emotionally hurtful action toward another peer; and (5) reporting another nurse

74 Chapter 3 Ethics in Professional Nursing Practice

FOCUS FOR DEBATE: IS MORAL COURAGE NECESSARY FOR NURSES?

Sulmasy and colleagues (2008) raised some significant questions for ongoing reflection and interprofessional dialogue. Since the time of this study and others, the ANA recognized the need to refresh its statement on end-of-life decisions and DNR orders in 2012 and in 2016 on patient end-of-life decisions and DNR orders. Nurses continue to experience considerable difficulties and moral distress about patient decisions about end-of-life and DNR orders possibly because of their own moral conflicts with the decisions or restrictions in their involvement in the decision-making process.

Is moral courage necessary? If so, how much and in what contexts and circumstances? The ANA’s two position statements on end-of-life scenarios (2012, 2016) indicated the need for nurses to meet their ethical obligations by providing support and participating more actively in patient and family end-of-life decisions, including DNR orders, but only when those actions do not violate the principle of nonmaleficence.

Apply the same guidelines to this debate as you did for previous debates in this chapter. Before you formulate your position, refer to Sulmasy and colleagues (2008) and the ANA’s two position statements on end of life (2012, 2016). Then, conduct an internet and database search to discover other strategies and creative ways to practice moral courage.

Defend your position on the following questions:

■ In what ways can nurses practice moral courage regarding patient and family discussions of end-of-life decisions and DNR orders? To answer this question, also consider the following: To what extent should the nurse be involved in initiating end-of-life decisions and DNR orders? Is it the nurse’s place to recommend or not recommend a DNR order?

■ Discuss some strategies and creative ideas for practicing moral courage in other circumstances.

for exploitation of a patient or family member, such as when a nurse posts a picture or a story of a patient on a social networking site.

Although a potential threat exists for physical harm, it is more likely that threats will materialize in the form of “humiliation, rejec- tion, ridicule, unemployment, and loss of so- cial standing” (Lachman, 2007, p. 131). Nurses can facilitate having moral courage in two ways during threatening situations. Nurses would probably regret any careless and hasty reactions, or even nonreactions or silence, on their part, so they must first try to soothe in- ner feelings that could trigger these behaviors. Self-talk, relaxation techniques, and moral reasoning to process information while push- ing out negative thoughts are ways for nurses to keep calm in the face of a confrontation in- volving moral courage. Second, nurses must assess the whole scenario while identifying the

risks and benefits involved in standing alone (Lachman, 2007).

Communication The next ethical competency is communi- cation. There is a long trail of research on nurse–physician, nurse–nurse, and nurse– patient relationships related to ethical and unethical communication. Refer to sections later in this chapter on nurse–physician and nurse–nurse relationships for a discussion of a few studies.

Communication means to impart or exchange information in meaningful, clearly understood ways between the communicators. Effective communication nurtures relation- ships and is fundamental to nursing; it there- fore engages nurses to express messages clearly and understand the meaning of what is being

Ideal Nursing Ethical Competencies 75

communicated. To be effective, nurses must reside in a state of mindfulness and be effect- ive listeners. Both parts of communication are integral for effective communication.

Mindfulness Important to the ethical competency of com- munication is mindfulness, which in the past few decades has gained significant mean- ing and implications for nursing and other healthcare fields. The term mindfulness traces back to Eastern Buddhist philosophy as one element of the Noble Eightfold Path. When Jon Kabat-Zinn began teaching mindfulness training in 1979 at the University of Mas- sachusetts Medical School and founded the Mindfulness-Based Stress Reduction Program, the American and other Western healthcare systems embraced the concept and expanded research-based knowledge, especially in sec- ular practice (Center for Mindfulness, 2014; Greater Good, 2014).

Mindfulness is the degree of quality that requires “paying attention in a particular way: on purpose, in the present moment, and non- judgmentally” (Kabat-Zinn, 2009, p. 4). This definition indicates that mindful people are engaged and attentive in their activities or roles by continuously analyzing, categorizing, and distinguishing data. People with expertise and specialized skills, such as nurses, physicians, and others, need mindfulness on a minute-by- minute basis for providing safe and competent care and building good and positive relation- ships with patients, other nurses, and physicians.

Even with mindfulness as a critical re- quirement of communication in the workplace, healthcare professionals are susceptible to in- and-out moments of mindlessness, which is the opposite of mindfulness. Mindlessness is a state of unawareness and not focusing, similar to functioning in autopilot mode. The moments of mindlessness can potentially increase in dur- ation, and over a long period, people thought- lessly begin ruling out their full range of options in everyday life and work. People in perpetually

mindless states find themselves trapped in a state of unawareness without any regard to ex- panding choices and views in different contexts or cultures. Eventually, they are stuck in habits of not seeing (Kabat-Zinn, 2009).

The benefits of mindfulness exercises and training are numerous, and research supports its value and therapeutic benefits. The follow- ing examples are some of the benefits:

■ Reduces stress, negative emotions, and depression

■ Enhances healthier living and eating and an overall sense of quality of life

■ Enhances attention skills and focusing ■ Enhances communication skills ■ Promotes more positive relationships ■ Increases memory and learning capacity ■ Increases the ability for a deeper type

of empathy, compassion, serenity, and altruism

■ Increases the immune system’s ability to fight off disease

The focus of this section is the benefits of mindfulness in communication. A body of re- search exists on the connection between com- munication and mindfulness. Mindfulness enriches the moral quality of the interactions between nurses and patients, nurses and phy- sicians, and nurses and other nurses. Effective communication facilitates nurses’ ethical be- havior in work, that is, to provide ethical care to achieve better patient outcomes. Mindful nurses pay close attention to their attitudes and find ethical ways to interact and behave. When nurses intentionally focus on the pres- ent moment, the present problems and issues, and the present surroundings and interactions, all in a nonjudgmental way, they reduce their own stress and expand their vision of care to a wider choice of options to effect improved pa- tient outcomes.

Mindfulness exercises promote nurses’ ability to focus and stay alert to the details of decision making and patient care. In a booklet published by the ANA, titled Mindfulness and You: Being Present in Nursing Practice, Bazarko

76 Chapter 3 Ethics in Professional Nursing Practice

(2014) emphasized the need for nurses to practice mindfulness and take care of them- selves and thus provide safe patient care. In the booklet are examples of mind–body therapies, strategies for improving the mind–body con- nection, and a guide for a mindfulness journey.

Formal meditation is one primary way to cultivate mindfulness. However, in a video called “The Stars of Our Own Movie” (Greater Good, 2010), Kabat-Zinn emphasized that mindfulness is not just about sitting in the lo- tus position; it is more about living life as if life is genuinely worth living, moment by moment.

Some ways to begin brief daily mindful- ness exercises are as follows (Greater Good, 2014, How Do I Cultivate It?):

■ Pay close attention to your breathing, espe- cially when you’re feeling intense emotions.

■ Notice—really notice—what you’re sens- ing in a given moment, the sights, sounds, and smells that ordinarily slip by without reaching your conscious awareness.

■ Recognize that your thoughts and emo- tions are fleeting and do not define you, an insight that can free you from negative thought patterns.

■ Tune in to your body’s physical sensa- tions, from the water hitting your skin in the shower to the way your body rests in your office chair. (para. 2)

Effective Listening Effective listening is the other essential feature of the ethical competency of communication. A state of mindfulness must be present for a per- son to effectively listen. Without attention and a strong focus, listeners cannot respond appropri- ately no matter how well meaning a person’s in- tention of listening is. As previously mentioned, people often experience in-and-out awareness moments as distractions, and wandering-off moments trickle through the mind.

Effective listening means the commu- nicators in the exchange will comprehend the active information and then form a mutual understanding of the essence of the dialogue (Johnson, 2012). The mutual understanding compels the listeners to repeat the message to clarify facts and other details. When nurses earnestly listen, they listen with extreme think- ing power because they must show a nonjudg- mental interest in what the speaker is saying, absorb the information, and provide nonverbal cues and verbal feedback to signal an under- standing of the message to the speaker. Why is effective listening so important to nurses? The foremost reason is that nurses have a moral obligation to provide competent care and build positive work relationships to promote better patient outcomes. Nurses will not give compe- tent care if their minds are wandering. They risk misinterpreting facts, physician’s orders, or patient interactions.

Concern Concern is the last major ethical competency. The competency of concern means that nurses feel a sense of responsibility to think about the scope of care important for their patients; sometimes a sense of worrying about the health or illness of patients prompts nurses

ETHICAL REFLEC TION: KABAT- ZINN’S VIEW OF BEING TRULY IN TOUCH

To allow ourselves to be truly in touch with where we already are, no matter where that is, we have got to pause in our experience long enough to let the present moment sink in; long enough to actually feel the present moment, to see it in its fullness, to hold it in awareness and thereby come to know and understand it better. Only then, can we accept the truth of this moment of our life, learn from it, and move on. (Kabat-Zinn, 2009, pp. xiii –xiv)

Reproduced from Kabat-Zinn, J. (2009). Wherever you go, there you are: Mindfulness meditation in everyday life. New York, NY: Hyperion. Reprinted by permission.

Ideal Nursing Ethical Competencies 77

to action. Being an advocate, using power, and giving culturally sensitive care compose the ethical competency of concern for patients.

Advocacy A general definition of advocacy is pleading in favor of or supporting a case, person, group, or cause, but many variations on the definition of advocacy exist. Related to professional nurs- ing ethics, Bu and Jezewski (2006) found three central characteristics of patient advocacy in their concept analysis:

■ Safeguarding patients’ autonomy ■ Acting on behalf of patients ■ Championing social justice in the provi-

sion of health care (p. 104)

Patient advocacy, an essential element of ethical nursing practice, requires nurses to em- brace the promotion of well-being and uphold the rights and interests of their patients (Vaar- tio, Leino-Kilpi, Salanterä, & Suominen, 2006).

The ANA (2015) did not explicitly de- fine the terms advocacy or patient advocacy in the Code of Ethics for Nurses with Inter­ pretive Statements, although advocating for the patient is an expectation as evidenced by Provision 3 of the code: “The nurse promotes, advocates for, and protects the rights, health, and safety of the patient” (ANA, 2015, p. 9). The ANA (2015) also provided some examples of nursing advocacy obligations. Nurses may (a) advocate to provide environments with sufficient physical privacy (Provision 3.1); (b) advocate when participants decline to par- ticipate or withdraw from research before its completion (Provision 3.2); (c) advocate for assistance, treatment, and access to fair institu- tional and legal processes (Provision 3.6); and (d) participate as advocates or representatives in civic activities (Provision 7.3).

These examples translate to nurses func- tioning as advocates for patients and their rights; for public social justice issues of health care, policy, and economics; and for each other. In matters of patient care, nurses are in

ideal positions for patient advocacy. Nurses can clarify and discuss with patients their rights, health goals, treatment issues, and po- tential outcomes, but they must realize some of the barriers to advocacy. These barriers arise as shadows from unresolved issues.

ETHICAL REFLEC TION: BARRIERS TO NURSING ADVOCAC Y

Hanks (2007) identified barriers to nursing advocacy based on findings from existing literature:

■ Conflicts of interest between the nurse’s moral obligation to the patient and the nurse’s sense of duty to the institution

■ Institutional constraints ■ Lack of education and time ■ Threats of punishment ■ Gender-specific, historical, critical social

barrier related to nurses’ expectations of a subservient duty to medical doctors

Data from Hanks, R. G. (2007). Barriers to nursing advocacy: A concept analysis. Nursing Forum, 42(4), 171–177.

ETHICAL REFLEC TION: PRISMS

PRISMS is an acronym for key action verbs that describe strategies to promote patient advocacy: P: Persuade R: Respect I: Intercede S: Safeguard M: Monitor S: Support

Butts, J. B. (2011). PRISMS—An acronym for key action verbs for strategies to promote patient advocacy. Personal Collection. Ellisville, MS, copyright 2011.

Hamric (2000) offered excellent ways for nurses to boost their patient advocacy skills: (1) nursing educators need to convert basic ethics education to real-life application and action, (2) practicing nurses need to continue

78 Chapter 3 Ethics in Professional Nursing Practice

their education on the ethical imperatives of advocacy, and (3) institutions need to review their incentives to promote patient advocacy. Butts (2011) created the acronym PRISMS as a reminder of strategies to promote patient advocacy.

Power By definition, power means a person or group has influence in an effective way over others—power results in action. Nurses with power have the ability to influence persons, groups, or communities. Nurses who are in- grained with the ideals of socialized power seek goals to benefit others with intent to avoid harm or negative effects—an indication of the principles of beneficence, nonmaleficence, and justice at work. Goals of social benefit to others are often accomplished through global and national efforts or efforts of members of large service or state organizations. Individual volunteer organizational work by nurses con- tributes toward efforts of shared goals within larger organizations and smaller shared goals for individuals and communities.

Nurses and patients together form a pow- erful entity because of evolving paradigm shifts in clinical, political, and organizational power (Hakesley-Brown & Malone, 2007). In the past, nurses facilitated patients’ eman- cipation from a paternalistic form of care to today’s autonomous decision makers seeking quality care. Because nurses participate in and direct activities involving patient care, they are in powerful positions to improve quality in patient care and oversee professional nursing practice standards. Nurses continue to take ad- vantage of their empowerment as a profession to control the content of their practice, the context of their practice, and their competence in practice.

Ponte and colleagues (2007) interviewed nursing leaders from six organizations to understand the concept of power from the leaders’ perspectives on ways nurses can ac- quire power and leaders demonstrate power in

practice and in work. According to the leader participants in the study, power lies within each nurse who engages in patient care and in other roles, such as in organizations, with colleagues, and within the nursing profession as a whole. As nurses develop knowledge and expertise in practice from multiple domains, they integrate and use their power in a “collab- orative, interdisciplinary effort focused solely on the patients and families that the nurse and care team serve and with whom they partner” (Ponte et  al., 2007, Characteristics of Nursing Power section, para. 1).

Eight properties of a powerful professional practice can serve as a foundation for current and future power in nursing (Ponte et  al., 2007). These eight practices include nurses (1) acknowledge their role in patient and family care; (2) commit to continuous educational ac- tivities on skills and evidence-based practice; (3) exhibit professionalism and be conscious of presence in all activities; (4) value collab- oration with other professionals in nursing and other disciplines; (5) position themselves to influence decisions and allocate resources; (6) develop good character and a sought-after perspective by being inspirational, compas- sionate, and credible; (7) recognize that nurse leaders should pave the way for nurses’ voices to be heard and help novice nurses become powerful professionals; and (8) evaluate the power of nursing and nursing department or- ganizations by analyzing the mission, values, and commitment of the organization.

Culturally Sensitive Care Culture refers to “integrated patterns of human behavior that include the language, thoughts, communications, actions, customs, beliefs, values, and/or institutions of racial, ethnic, re- ligious, and/or social groups” (Lipson & Dib- ble, 2005, p. xi). Giving culturally sensitive care is a core element in closing the gap on health disparities. Culturally sensitive care means nurses must first have a basic knowledge of cul- turally diverse customs and then demonstrate

Ideal Nursing Ethical Competencies 79

ETHICAL REFLEC TION: TWO LEVELS OF POWER

There are a variety of ways in which power is abusive, coercive, or not used at all. In fact, nurses who do not use their power for the good of a situation are ineffective. The following two examples of power represent one on a smaller scale and one on a larger scale.

Power on a Smaller Scale Ms. Gomez’s liver cancer is inoperable and incurable. She is unaware of her diagnosis and prognosis, but she realizes she is experiencing abdominal pain that she described as level 8 on a 10-point scale. Everyone working in the oncology unit is involved in her care and is aware of her diagnosis. For a few days, the nurses have been observing Ms. Gomez’s continued edginess and irritability as they interact with her. Ms. Gomez senses something is terribly wrong and begins to panic when physicians gather in her room during clinical rounds and talk medical jargon about her “case” in front of her. Ms. Gomez experienced an acute anxiety reaction. The outcome of this situation could have been better managed if her nurse had discussed the situation with the physicians beforehand and tried to convince them to discuss her case somewhere else or politely asked them to explain Mrs. Gomez’s diagnosis and prognosis to her. Had the nurse exerted a noncoercive power over this situation, the outcome would have been averted.

Identify some specific strategies the nurse can use to establish, on a small-scale or unit level, policies about clinical rounds or disclosure to patients?

Power on a Larger Scale Nurse Mary works at a hospice located in a coastal region and has six patients in her care. The National Weather Service forecasted several potential life-threatening hurricanes for her region during the next few weeks. Most of her patients are financially challenged. Mary has choices to make: (1) she could do nothing and let nature take its course; (2) she could educate her patients and families on ways to prepare for a disaster; or (3) she could educate her patients and families on disaster preparedness and use her power to help poor, homebound patients—not just her patients—in the community to prepare for the disaster. One way for Mary to exercise her power immediately on a large, community-wide scale is to have an immediate fund-raiser and supply drive and then work with agencies, such as the American Red Cross, to recruit community or nurse volunteers for distributing the supplies, handing out disaster preparedness information, and verbally educating the families.

What other strategies could Mary implement?

constructive attitudes based on learned know- ledge (Spector, 2016). A culturally competent nurse or healthcare provider of care

develops an awareness of his or her existence, sensations, thoughts, and environment without letting these factors have an undue effect on those for whom care is provided. Cultural competence is the adaptation of care in a manner that is consistent with the culture of the client and is there- fore a conscious process and nonlin- ear. (Purnell, 2002, p. 193)

The process of nurses getting to know themselves and their values, beliefs, and moral compass is fundamental to providing cultur- ally competent care (Purnell, 2017). Without some degree of cultural knowledge, nurses cannot possibly provide ethical care; for ex- ample, relationships with others cannot de- velop into a trusting, respectful exchange.

Lipson and Dibble’s (2005) trademarked acronym, ASK (awareness, sensitivity, and knowledge), can be used by nurses to approach patients from various cultures. The many cul- tures in the United States differ in their beliefs about health, illness, pain, suffering, birth,

80 Chapter 3 Ethics in Professional Nursing Practice

parenting, death, dying, health care, com- munication, and truth, among others. Nurses need to conduct a quick assessment of cultural diversity needs (Lipson & Dibble, 2005). The following cultural assessment is an easy and quick approach based on ASK:

1. What is the patient’s ethnic affilia- tion?

2. Who are the patient’s major support persons and where do they live?

3. With whom should we speak about the patient’s health or illness?

4. What are the patient’s primary and secondary languages and speaking and reading abilities?

5. What is the patient’s economic sit- uation? Is income adequate to meet the patient’s and family’s need? (Lipson & Dibble, 2005, p. xiii)

Nurses’ genuine attention to cultural di- versity and the diversity within each culture promotes ethically competent care, which is es- sential in everyday nursing practice. In addition, nurses must increase their knowledge when car- ing for culturally diverse patients. Provision 1 of the Code of Ethics for Nurses with Interpretive Statements (ANA, 2015) compels nurses to care for persons regardless of social or economic status, personal attributes, or nature of health problems. If nurses uphold Provision 1, they plausibly will provide culturally sensitive care.

In this section, you have read about se- lected nursing ethical competencies: (1) moral integrity—honesty, truthtelling, benevolence, wisdom, and moral courage; (2) communica- tion—mindfulness and effective listening; and (3) concern—advocacy, power, and culturally sensitive care. Refer to the following boxes to test your moral grounding.

ETHICAL REFLEC TION: ETHICAL COMPETENCIES OF NURSES—TEST YOUR MORAL GROUNDING!

Thus far, you have learned about the ethical competencies that define an ideal nurse. The codes of ethics and the ethical competencies serve as a foundation for nurses to develop moral grounding for professional practice, education, research, and leadership.

Test your personal moral grounding! List the ethical competencies of a nurse, and write down how these competencies will relate to your ethical nursing practice. Briefly imagine or discuss an ethical situation that could arise with regard to each competency, and then give a corresponding resolution. Moral integrity:

■ Honesty ■ Truthfulness and truthtelling ■ Benevolence ■ Wisdom ■ Moral courage

Communication:

■ Mindfulness ■ Effective listening

Concern:

■ Advocacy ■ Power ■ Culturally sensitive care

Ideal Nursing Ethical Competencies 81

FOCUS FOR DEBATE: ETHICAL COMPETENCIES—TEST YOUR MORAL GROUNDING! IS IT OK FOR A STUDENT TO CHEAT?

Gilda, a nursing student, discovered a website that provides fee-for-service tests with answers and rationales, based on test banks from older editions of books. The legality and ethicality of the company’s business are questionable, but Gilda has an upcoming exam in her health assessment class and does not have time to study because of family issues. The company’s website advertises test customization for any subject matter. Without much forethought, Gilda ordered a customized test, and the company sent her digital access to it. Gilda studied the questions and answers. While she was taking the actual course exam, however, she realized that some of the questions were either very different or had variations of the wording in the purchased test, but a few questions were similar. She was happy to see a score of 82 on her course exam.

Explore the following questions to test your moral grounding. Consider a live or online classroom debate for this exercise with two or more groups of students.

■ Before you continue with this activity, analyze your moral grounding. Write down basic morals you value in your personal life and what you will or currently value as a nursing professional. Where do you stand?

■ Is Gilda’s action considered cheating or academically dishonest by your college or university standards? Why or why not? Please explain.

■ When you violate the academic integrity policy of your college or university, what can happen if you are caught? Please explain your rationale.

■ Do you believe Gilda considered the action to be a necessary means to a necessary end? When answering, explore all options and consequences from the perspective of utilitarian theory.

( The story continues.) Gilda discovered another nursing student who had difficulty passing tests. She approached the student

and explained about finding the company that sells tests, but the student had uncomfortable feelings about ordering a test. The student discussed the issue with a couple of her friends from nursing school to seek their guidance. Those students told the professor about Gilda’s action and the test company. Gilda was caught by such surprise when the professor approached her to verify the story that she was too nervous not to admit her actions. She rationalized it by explaining her lack of time and the family issues; then, she pleaded with the professor to overlook this one incident and said she would never cheat again. Based on the academic integrity policy, however, Gilda failed her course and was dismissed from the program.

■ What was an alternative action for Gilda? Derive your explanation from any of the ethical theories or approaches, such as utilitarian theory, Kant’s deontology framework, or a virtue ethics approach.

■ What are a couple of academically dishonest scenarios? How do these examples compare to Gilda’s action?

▸ Nursing Professional Relationships

Nurse–Physician Relationships In centuries past and even today, women have experienced oppression related to inequity is- sues and hierarchical relationships, such as in

political structures and doctrines and in certain religious orders. History reveals a significant degree of women’s oppression. From the 1300s to the 1600s, women who claimed to be healers were burned at the stake after accusations of witchery (Ehrenreich & English, 1973). Other events also gave rise to oppression of women during that same time. By the early 20th cen- tury, Florence Nightingale’s work in the 1800s

82 Chapter 3 Ethics in Professional Nursing Practice

helped move nurses to a more respected, no- table standing, but some people continued to think of women in general as functioning only in domestic roles. Nurses, to varying degrees, have been working since then to overcome this perception.

Stein (1967), a physician, identified a type of relationship between physicians and nurses that he called the doctor–nurse game. The game originated from a hierarchical rela- tionship, with doctors being in the superior position. The hallmark of the game is the avoidance of open disagreement between the disciplines. Avoidance of conflict is achieved when an experienced nurse cautiously offers suggestions in such a way to keep the physi- cian from perceiving that consultative advice is coming from a nurse. In the past, student nurses were educated about the rules of the game while attending nursing school. Over many years, others have acknowledged the his- torical accuracy of Stein’s characterization of doctor–nurse relationships (Fry & Johnstone, 2002; Jameton, 1984; Kelly, 2000).

Stein, Watts, and Howell (1990) revisited the doctor–nurse game concept 23 years after Stein first coined the phrase. Nurses unilat- erally had decided to stop playing the game. Some of the reasons for this change and the ways change was accomplished involved nurses engaging in more dialogue rather than games- manship, the profession’s goal of equal partner- ship status with other healthcare professionals, the alignment of nurses with the civil rights and women’s movements, the increased percentage of nurses who achieved higher education, and collaboration between nurses and physicians on projects. In the process of abandoning the game, many nurses took a less than together- ness approach toward physicians.

Some nurses believe an adversarial fight needs to continue to establish nursing as an au- tonomous profession. Nurses’ reports and opin- ions of strained relationships between nurses and physicians have steadily appeared in the literature in many countries, despite efforts by some nurses to have friendlier relationships with

physicians. Reported reasons for the strained re- lationships include the following: (1) the hierar- chical way ethical care decisions are made, both institutional system decisions and physician decisions; (2) competency and quality-of-care conflicts; and (3) lack of communication.

Other researchers echoed Malloy and col- leagues’ (2009) findings of nurses’ perceptions

RESEARCH NOTE: QUALITATIVE FOCUS GROUP STUDY ON AN ORGANIZATIONAL CULTURE

Forty-two nurses from a variety of settings in four nations (Canada, Ireland, Australia, and South Korea) participated in Malloy and colleagues’ (2009) qualitative focus group study to express their opinions on dilemmas and decisions in the everyday care of elders with dementia as well as to identify how end-of-life decisions are made. The researchers extracted four themes in conjunction with an unexpected finding that nurses from all countries consistently voiced strained and powerless hierarchical relationships with some physicians:

■ The first theme arose because of two philosophies: care (nurses) versus treatment (physicians) was a source of tension between nurses and physicians on end-of-life decisions.

■ The second theme was a constrained obligation in terms of the nurse–physician hierarchy, established protocol, and the way decisions were made.

■ Third, nurses perceived physicians, patients, families, and the system as silencing the nurse’s voice; they also believed themselves to be unequal participants in the care of patients largely because of the system.

■ The fourth theme was a lack of respect for the profession of nursing from other professionals.

Data from Malloy, D. C., Hadjistavropoulos, T., McCarthy, E. F., Evans, R. J., Zakus, D. H., Park, I., . . . Williams, J. (2009). Culture and organizational climate: Nurses’ insights into their relationship with physicians. Nursing Ethics, 16(6), 719–733.

Nursing Professional Relationships 83

of inequality with physicians. Churchman and Doherty (2010) found that solutions to address inequality with physicians are complex and do not exist universally because certain factors contribute to the challenge of finding answers: nurses (1) are discouraged from confronting physicians in everyday practice, (2) fear con- flict and aggression by physicians, and (3) fear having their views disregarded. Institutional hierarchy continues to be a source for un- equal rewards and power between nurses and physicians.

Nurse–Nurse Relationships In the provisions of its Code of Ethics for Nurses with Interpretive Statements, the ANA (2015) characterized various ways nurses demon- strate their primary responsibility to their patients, families, and communities. Some key indicators in the code illustrate this re- sponsibility, such as having compassion for

patients, showing respect to patients and each other, collaborating with other healthcare professionals, protecting the rights and safety of patients, advocating for patients and their families, and caring for and preserving the integrity of oneself and others. Patient and family relationships are important, but good relationships with other nurses and other healthcare professionals are necessary for the successful follow-through of the responsibility to patients.

Nurses often treat other nurses in hurtful ways through what some people have called lat- eral, or horizontal, violence (Christie & Jones, 2013; Kelly, 2000; McKenna, Smith, Poole, & Coverdale, 2003; Thomas, 2009). Horizontal violence, also known as workplace bullying, involves interpersonal conflict, harassment, intimidation, harsh criticism, sabotage, and abuse among nurses. It may occur because nurses feel oppressed by other dominant groups, such as physicians or institutional

RESEARCH NOTE: QUALITATIVE STUDY OF THE INTERPROFESSIONAL NURSE–PHYSICIAN RELATIONSHIP

Pullon’s (2008) qualitative study of 18 nurses and physicians in primary care settings from New Zealand is an example of research on features that build an interprofessional nurse–physician relationship. Pullon identified certain extrinsic and intrinsic factors of this relationship, but the article is focused only on the intrinsic nature of individual interprofessional relationships. Demonstrated professional competence, which is a key feature of interprofessional relationships, served as the foundation of respect for each other and in turn formed a level of trust calculated over time with reliable and consistent behavior. The findings were as follows:

■ Nurses and physicians identified their professional groups as distinct but complementary. ■ Nurses described the formation and maintenance of quality professional relationships with patients

and others as the heart of their professional work and teamwork as one means for achieving those relationships.

■ Physicians depicted the physician–patient relationship as the crux of their practice but only in the context of consultation.

■ Nurses and physicians both unveiled several shared values and attitudes: (1) the provision of continuity of care; (2) the ability to cope with unpredictable and demanding care; (3) the importance of working together and building a relationship; and (4) the significance of professional competence, mutual respect for each other, and trust in an ongoing relationship but with the realization that trust could be broken quickly in the early stages of a trustworthy relationship.

Data from Pullon, S. (2008). Competence, respect, and trust: Key features of successful interprofessional nurse-doctor relationships. Journal of Interprofessional Care, 22(2), 133–147.

84 Chapter 3 Ethics in Professional Nursing Practice

administrators; subsequently, nurses turn their anger toward each other.

Acts of horizontal violence often occur subtly. The behaviors repeat and escalate over a long period of time. Some nurses charac- terize violence that is perpetrated by nurses against other nurses who excel and succeed as the tall poppy syndrome (Kelly, 2000). The perpetrators feel they need an outlet for their pent-up anger, so they cut down the tall pop- pies (nurses) who outshine them. This type of behavior creates an ostracizing nursing culture that discourages individual success and rec- ognition. The term tall poppy syndrome was popularized in Australia and New Zealand, where it is used as a derogatory reference, but the concept originates from Greek and Roman philosophers and writers.

Thomas studied the causes and conse- quences of nurses’ stress and anger. Nurses voiced horizontal and vertical violence as common sources of stress. “One of the most disturbing aspects of our research data on nurses’ anger is the vehemence of their anger at each other” (Thomas, 2009, p. 98). The find- ings indicated the following common charac- teristics of horizontal violence:

■ Subtle nonverbal behaviors, such as roll- ing eyes, raising eyebrows, or giving a cold shoulder

■ Sarcasm, snide remarks, rudeness ■ Undermining or sabotaging ■ Withholding needed information or

assistance ■ Passive–aggressive (behind-the-back)

actions ■ Spreading rumors and destructive gossip ■ False accusations, scapegoating, blaming

(p. 98)

Horizontal Violence and Wounded Healers Horizontal violence, or workplace bullying, in nursing is counterproductive for the profes- sion. Nurses experience a significant level of

horizontal violence, sometimes more so than in other helping professions. These long-term emotional effects can compromise patient safety and the nurses’ ability to practice pro- ficiently (Thomas, 2009). If stress and trau- matic feelings are not managed properly, the unrecognized and unmanaged effects lead to unproductive coping and unresolved issues; traumatized nurses will function as the walking wounded (Christie & Jones, 2013). Soon, others will observe that the walking wounded have difficulty in professional and personal re- lationships with other people.

Healing can occur. The first step in healing is recognizing the effects of the trauma. Deep self-awareness is necessary for grasping some personal meaning (Conti-O’Hare, 2002). This awareness enables wounded nurses to initiate work toward improving their coping mecha- nisms. Only then can nurses begin transform- ing and transcending their wounds toward healing, thus becoming wounded healers.

Wounded healers are informed by their own traumatic and difficult experiences that occur in the process of their everyday work, but they also transform their raw wounds to a healed scar that enables a better understanding of others’ pain. In essence, a wounded healer has a rich sense of empathy for others because of past personal wounds (Groesbeck, 1975). The process of healing takes time and requires a strong desire to develop as a wounded healer. “Woundedness lies on a continuum, and the wounded healer paradigm focuses not on the degree of woundedness but on the ability to draw on woundedness in the service of heal- ing” (Zerubavel & Wright, 2012, p. 482).

Improving Nurse–Nurse Relationships Safeguarding patients and patient care is a moral priority, and positive nurse–nurse re- lationships promote the moral climate neces- sary for safe and competent care. Sometimes, nurses or nursing leaders must take unpleas- ant, but not spiteful, action with regard to

Nursing Professional Relationships 85

nursing behaviors and the protection of pa- tients. Nurses serve as advocates when they take appropriate action to protect patients from unethical, illegal, incompetent, or im- paired behaviors of other nurses (ANA, 2015). For nurses who become aware of these behav- iors, appropriate actions involve reviewing policies; seeking guidance from administrators in the chain of command; documenting the occurrences; and approaching the offending nurse in a constructive, compassionate man- ner. Gossip, condescension, or unproductive derogatory talk are negative tactics that do not help but rather serve only to damage reputa- tions and relationships.

Nurses can strengthen a sense of commun- ity within the profession by working to heal the disharmony and transform their anger to support other nurses’ accomplishments rather than treating them as tall poppies that must be cut down. Individual nurses need to self-reflect at the end of the workday by examining their actions and the dialogue they had with others. All nurses—those who follow through with daily self-reflection and those who do not— need to “make a commitment to supportive colleagueship” and “refuse to get caught up in workplace negativism” (Thomas, 2009, p. 109).

▸ Nurses and Social Media Many people who use the internet have already experienced, to some degree, the consequences of unethical or illegal behavior, such as being the target of someone else’s devious actions. The digital age has brought about new levels of public exploitation to many people. Computers strongly influence our personal and profes- sional lives every day. Because of this influence, nurses and nursing students need to understand the potential for unethical and illegal behaviors.

Moral Spaces and Blurred Lines The risk for crossing professional boundaries increases as lines and moral spaces become

blurred in nursing practice. Blurred-lined be- haviors and obvious line crossings involve an invasion of the moral spaces of others and pos- sibly a violation of their privacy. What nurses could view as a flippant or innocent social media comment may be perceived by others as vulgar, inflammatory, or threatening. Whether the nurse remarked as a joke or an intentional display of hostility, the comment can quickly transform from mere opinion to fact-based information.

Moral space is defined as “what we live in . . . any space formed from the relationships between natural and social objects, agents and events that protect or establish either the condi- tions for, or the realization of, some vision of the good life, or the good, in life” (Turnbull, 2003, p. 4). Respect for one another’s moral spaces takes a serious commitment by those who use the internet. Dozens of ethical codes of con- duct exist for users of the internet, but no mat- ter how many codes exist or what populations they serve, the codes are of no use if they are not practiced consistently or people lack moral integrity. Nurses and nursing students must re- main devoted to respecting human beings in all interactions and actions, including all features of social networking. Violations of the princi- ple of autonomy generally involve matters of respect for human beings, self- determination, trustworthiness, confidentiality, and privacy. Violations of the principle of nonmaleficence in social media exchanges include intentional and hurtful remarks that could result in perceived or actual harm to the recipients.

Social Media, Email, and Cell Phones Social media are a collection of online plat- forms and tools that enable collaborative community-based exchanges among people. People share information, profiles, and opin- ions to promote conversations between one another or to market certain products. Nurses routinely use social media to befriend others who have common interests or keep in touch

86 Chapter 3 Ethics in Professional Nursing Practice

with friends. Facebook, Twitter, Snapchat, In- stagram, Google+, YouTube, and other social media sites along with email and cell phones are essential communication tools for health- care professionals, just as they are for others. Their usefulness has both benefits and perils.

Benefits of Using Social Media For nurses, the positive side of social media is that they provide minute-to-minute informa- tion and allow nurses to share knowledge and build professional relationships. Social net- works “provide unparalleled opportunities for rapid knowledge exchange and dissemination among many people” (ANA, 2011, p. 3).

In 2011, several key nursing and phy- sician professional organizations published statements or booklets about the use of social media. The ANA published a booklet titled ANA’s Principles of Social Networking and the Nurse: Guidance for Registered Nurses (2011). Three ANA documents provided a foundation for the development of the social networking principles: (1) Code of Ethics for Nurses with Interpretive Statements (2015), (2) Nursing: Scope and Standards of Practice (2010a), and (3) Nursing’s Social Policy Statement: The Es­ sence of the Profession (2010b). The NCSBN also published a booklet titled A Nurse’s Guide to the Use of Social Media (2011b).

Physicians also see value in the use of social networks for taking care of routine work, such as refilling prescriptions, answering questions, and sharing informational websites. In 2011, the AMA issued an opinion that echoes support for the use of social media to allow “personal ex- pression, enable individual physicians to have a professional presence online, foster collegiality and camaraderie within the profession, [and] provide opportunity to widely disseminate pub- lic health messages” (2011, para. 1).

Perils of Using Social Media Refer to the previous section titled “Moral Spaces and Blurred Lines” for a discussion of

nurses who post comments on social media sites. It illustrates how just one message can have long-standing negative effects. One of the foremost perils of using social media is the risk for violation of patient privacy and con- fidentiality. In fact, posting any work-related information is a legal and ethical violation of privacy, including the identification of and providing information about patients, employ- ers, administrators, coworkers, and others. In situations involving patients, the Privacy Rule of the Health Insurance Portability and Accountability Act (HIPAA) (U.S. Depart- ment of Health and Human Services [HHS], 1996) gives patients legal privacy protection. The Code of Ethics for Nurses with Interpretive Statements, Provision 3.1, illustrates the ethical aspect of privacy:

Privacy is the right to control access to, and disclosure or nondisclosure of, information pertaining to oneself and to control the circumstances, timing, and extent to which infor- mation may be disclosed. Nurses safeguard the right to privacy for individuals, families, and commun- ities.  .  . . Confidentiality pertains to the nondisclosure of personal infor- mation that has been communicated within the nurse-patient relationship. (ANA, 2015, p. 9)

Employers and other leaders sometimes label the behavior as unprofessional or illegal and also as complicated and uncertain. The growing number of employee violations is pushing employers to reinforce old policies and enforce new ones by initiating disciplinary courses of action against personnel who en- gage in inappropriate behaviors on social net- work sites and cell phones.

However, the question remains whether nurses can befriend patients and interact with them on social media without violat- ing HIPAA’s Privacy Rule. In a blog, Buppert (2018) asked that question and provided some

Nurses and Social Media 87

options for nurses when considering whether friendship with patients or patient groups is ethically and legally acceptable. First, if nurses or other healthcare professionals feel they must continually be on guard about what they say, they need to examine whether they should befriend patients. Second, nurses have an option of setting a personal rule to avoid befriending patients. Third, nurses can post a disclaimer to communicate that their posts are not considered official advice. Fourth, nurses should avoid any posts about duty-of-care statements, considering that legal issues could potentially arise.

If nurses and other healthcare profession- als follow their codes of ethics and current hos- pital policies, new policies on social networking and cell phone use would not be necessary. To- day, most employers, educational institutions, and professional organizations have initiated a position or policy on the use of social media because employees are increasingly using the media to complain about employers, cowork- ers, or even patients and families.

Actual Cases of Violations The potential exists for many violations in social media, email, and cell phones in both nurses’ everyday work and their personal lives. The following real-life case has been published in many articles and was a nationally publi- cized incident (NCSBN, 2011d).

In two other alarming stories, nurses were suspected of patient exploitation and viola- tions of confidentiality and privacy. One in- cident occurred in 2010 at Tri-City Medical Center in Oceanside, California. The medical center fired five nurses and disciplined a sixth nurse for violating confidentiality. Accord- ing to a spokesperson at the medical center, there was enough substantial information to warrant the firings of the five nurses because they had discussed patient cases on Facebook (“Five Nurses Fired,” 2010).

In the other social media case, the Loui- siana State Board of Nursing filed complaints against three nurses at the St. Tammany Par- ish Hospital emergency room after discov- ering abhorrent patient mistreatment. Lee Zurik (2012), an investigator for Fox 8 Live WVUE-TV, reported the story. Reba Camp- bell, an emergency room technician, reported nurses for allegedly exploiting, making fun of, and taking cell phone pictures of unconscious patients on at least two separate occasions. One case involved an overweight man who overdosed on pain and anxiety medications. According to Zurik (2012), Campbell stated the following:

Clancy [one of the three reported nurses] the other nurse walks in and puts these glasses on the patient and starts to make fun of him. That wasn’t funny enough, so they took charcoal that we dumped down his throat and painted his face like a football player and said, “Welcome to St. Tammany Parish Hospital ER. This is your ini- tiation for trying to kill yourself.” (Zurik, para. 5)

LEGAL PERSPEC TIVE: HIPAA, THE PRIVAC Y RULE, AND PROTEC TED HEALTH INFORMATION

The Privacy Rule in HIPAA legally protects patient health information in any form, whether electronic, paper, or oral (HHS, 1996, 2003). The public nature of any social or electronic communication poses ethical and legal problems, such as violations of the HIPAA Privacy Rule. Issues arise when nurses, physicians, and patients share information that identifies the person’s past, present, or future physical or mental condition; the type of health care received or considered; or past, present, or future payment for healthcare services.

Adapted from U.S. Department of Health and Human Services (HHS). (2003). Summary of the HIPAA privacy rule. Retrieved from https://www.hhs.gov/sites/default/files/privacysummary.pdf

88 Chapter 3 Ethics in Professional Nursing Practice

ETHICAL REFLEC TION: A CASE OF EMAIL FORWARDING

Sally, a nurse employed at a large long-term care facility, arrived at work to find a strange email from the previous night shift on her laptop. The source was unknown. Attached to the email was a photo of an elderly female wearing a gown, bending over, with an exposed backside. Sally asked the other day-shift staff members about the email and photo, and some of them confirmed they had received it on their office computers. No one knew anything about the source of the email or the identity of the woman in the photo, although the background appeared to be a patient room at the facility. In an effort to find out whether any of the staff knew who sent the email, Sally forwarded it to the computers and cell phones of several staff members, who later stated they had not seen the previous email. Some staff members were concerned, but others found it amusing and were laughing about it. Someone initiated a betting pool to guess the identity of the patient. At least one staff person posted the photo on her blog. By midday, the director of nursing had become aware of the photo and began an investigation because the organization was very concerned about the patient’s rights. The local media also became aware of the matter, and law enforcement was called to investigate whether any crimes involving sexual exploitation had been committed. After a large amount of media coverage and the identification of a few people engaged in the behavior, the administrator placed several staff members on administrative leave and reported the incident to the state board of nursing. The board investigated the reported nurses to determine if federal regulations pertaining to exploitation of vulnerable adults were violated. No one ever discovered the originator of the email and photo. After administrators identified the patient, her family threatened to sue the facility and all the involved staff. When the NCSBN (2011d) white paper to guide nurses on the use of social media was published, the board of nursing complaint was pending.

This scenario reflects the importance for nurses to consider their actions carefully. The nurses had a duty to immediately report the incident to their supervisor to protect patient privacy and maintain professionalism. Instead, the situation escalated to involve the board of nursing, the prosecutor, and the national media. The family experienced a high degree of humiliation, and the organization faced possible legal consequences and embarrassment by the national media focus.

Data from Data from National Council of State Boards of Nursing (NCSBN). (2011d). White paper: A nurse’s guide to the use of social media. Retrieved from https://www.ncsbn.org/Social_Media.pdf

Then, two other nurses pulled out their cell phones for photos. Campbell stated that the nurses took pictures of the patient, who was unconscious (Zurik, 2012). The nurses had evidently taken pictures in the past of un- conscious patients because the coworkers had been observed sitting at a desk giggling and ranking which pictures of different patients rated the highest. One of the nurses even tex- ted the photos from her cell phone to a phy- sician who chose a patient picture as the best one in a text reply to the nurse. The attorney representing the unconscious patient named the hospital and three nurses in a lawsuit.

Not related to and before these incidents, Thomas (2009) interviewed nurses across the United States to find meaning in their layers of stress and anger over unethical, harmful, and dehumanizing treatment of patients as part of a larger study to uncover reasons for nurses’ stress and anger. One of the themes discovered was “I feel morally sick.” Nurses described mistreatment and disregard of patients. They found the real-life observations repugnant; they felt physically sick, disgusted, and nause- ated, and they believed they were powerless to do anything about those abhorrent situations. Thomas’s interpretation of the narratives was

Nurses and Social Media 89

that the nurses were experiencing a significant amount of moral distress and the effects of moral residue because of their layers of stress and anger. Refer to the previous moral dis- tress and walking wounded discussions in this chapter.

The nurses’ narratives in Thomas’s study were depictions of their real-life experiences and feelings about stories that were not neces- sarily related to social networking. Unethical and illegal events have always been described and exposed by concerned healthcare person- nel, but the digital age has brought new levels of public exploitation to many patients and families. Sadly, social networking potentially could be a means for nurses to express frus- trations about their workplace, coworkers, and patients and their families, but no matter what reasons exist for sharing and divulging infor- mation, nurses who do so violate professional boundaries and most likely will be fired or dis- ciplined and will have their license suspended or revoked. Sharing any privileged information amounts to illegal, inappropriate, and unethi- cal violations. Many nurses and physicians are seeing these concerns as a valid worry and are taking action collectively through professional organizations and healthcare organizations.

Strategies for Using Social Media Using social media in an appropriate manner is generally not harmful and without malicious intent. Adopting an attitude to keep social media use appropriate will serve as a reminder to be mindful of ethical and legal implications of social media wrongdoing and a commit- ment to the code. Refer to this chapter’s section

on the ethical competency of mindfulness. Mindfulness in communication means having a keen awareness of the present moment and its surroundings, including the facts, interactions, activities, and processing of information, which suggests that mindfulness is a key ele- ment to suitable social media communication.

The ANA (2011) published six princi- ples of social networking for nurses. Where patients, nurses, and all surrounding issues are concerned in health care, the commit- ments of privacy and confidentiality serve as the foundation for all six principles of social networking.

Internet-based applications changed the way people categorize, process, organize, and store information. In most of the codes of eth- ics for nurses, including the ANA code, there are explicit discussions about nurses main- taining respect, confidentiality, and privacy; those same concepts are applicable to social networking, emailing, and cell phone use. Social media and other electronic media can be instrumental in building relationships and sharing worthwhile information, but nurses must follow the ethical guidelines within the codes of ethics and the legal regulations in the applicable states and countries.

Nurses and physicians are role models for other healthcare professionals, whether or not they want this role. Nurse role models are pres- ent in every area of nursing, including prac- tice, education, research, and administration. Nursing newcomers emulate the conduct of the role models, both the positive and negative behaviors. It is imperative that existing nurses influence new nurses and other personnel in a positive manner.

KEY POINTS

■ Nursing ethics is defined as the examination of all kinds of ethical and bioethical issues from the perspectives of nursing theory and practice.

■ Nursing as praxis means that nurses make morally good decisions, with indistinguishable means and ends to follow through with those decisions. The central point is to maintain an ethical practice.

90 Chapter 3 Ethics in Professional Nursing Practice

■ To practice nursing ethically, nurses must be sensitive enough to recognize when they are facing seemingly obscure ethical issues.

■ Administrators, physicians, or patients may occasionally request that nurses carry out actions that seem morally undesirable. Making a nursing decision whether to carry out this action will require further scrutiny, such as using the stench test.

■ The ANA outlined nine moral provisions with nonnegotiable obligations for nurses. Detailed guidelines with interpretive statements of each provision accompany the nine provisions.

■ A clear patient focus in the code obliges nurses to remain attentive and loyal to all patients in their care and also to be watchful for ethical issues and conflicts of issues that could lead to potential negative effects.

■ Common themes between the ANA and ICN codes include provision of compassionate care and alleviation of suffering, with an endorsement of the bioethical principles of autonomy, beneficence, nonmaleficence, and justice.

■ Professional boundaries are limits that protect the space between the nurse’s professional power and the patient’s vulnerabilities.

■ Boundaries give each person in the relationship a sense of legitimate control, whether the relationships are between a nurse and a patient, a nurse and a physician, a nurse and an administrator, or a nurse and a nurse.

■ Boundary violations and boundary crossings are two types of boundary departures that pose potential harm or exploitation and do not promote the best interest of another in the relationship.

■ In addition to the ethical guidelines from the code of ethics, nurses must also follow the board of nursing’s legal regulations and standards for practice in the nurse’s state of residence. Violations can result in voluntary surrender, suspension, or revocation of the nurse’s license, thus prohibiting the nurse from practicing. The boards of nursing function not to protect nurses but to protect the public and ensure safe and competent care.

■ If patients or their families file legal suits of negligence or malpractice in a civil court against a nurse, the plaintiff ’s lawyer must prove injury or harm to the plaintiff as a result of the nurse’s negligence or malpractice.

■ Thirteen interrelated ethical competencies, divided into three major competency areas, combine to form a well-defined, ideal nurse. The ethical competency areas are as follows: (1) moral integrity— honesty, truthfulness, benevolence, wisdom, and moral courage; (2) communication—mindfulness and effective listening; and (3) concern—advocacy, power, and culturally sensitive care.

■ Nurses with moral integrity act consistently within their personal and professional values. ■ Nurses experience moral distress when institutional constraints prevent them from acting in a way

that is consistent with their personal and professional composite of moral integrity. ■ Nursing involves hard moral choices that sometimes cause moral distress, resulting in emotional and

physical suffering, painful ambiguity, contradiction, frustration, anger, guilt, and avoidance of patients. ■ Research reveals a link between moral distress and the concepts of incompetent or poor care,

unsafe or inadequate staffing, overwork, cost constraints, ineffective policy, futile care, unsuccessful advocacy, the current definition of brain death, objectification of patients, and unrealistic hope.

■ Truthtelling means nurses should not intentionally deceive or mislead patients. No matter how disappointing the news will be to patients and their families, nurses must evaluate the situation carefully with wisdom and contemplation before making any decision on the degree of information disclosure.

■ Benevolent nurses will seek out ways to perform acts of kindness rather than only recognizing ways to do good.

■ Aristotle viewed wisdom as an excellence that develops with intellectual accomplishment and practical expertise. Having wisdom, or practical wisdom, requires that nurses engage in a calculated intellectual ability, contemplation, deliberation, and effort to achieve a worthy goal.

(continues)

Nurses and Social Media 91

■ When nurses have the moral courage to do what they believe is the right thing in a particular situation, they make a personal sacrifice of possibly standing alone, but they will feel a sense of peace in their decision.

■ Nurses must reside in a state of mindfulness and be effective listeners to develop good communication skills.

■ Mindfulness requires paying attention in a particular way—on purpose, in the present moment, and nonjudgmentally.

■ Effective listening means the communicators comprehend the actively exchanged information and then form a mutual understanding of the essence of the dialogue.

■ Concern means nurses feel a sense of responsibility to think about the scope of care that is important for their patients; sometimes, a sense of worrying about the health or illness of patients prompts nurses to action.

■ Patient advocacy, a competency of ethical nursing practice, requires nurses to embrace the promotion of well-being and to uphold the rights and interests of their patients.

■ Nurses who are ingrained with the ideals of socialized power strive to benefit others with the intent to avoid harm or negative effects.

■ Nurses’ genuine attention to cultural diversity and the diversity within each culture promotes ethically competent care, which is essential in everyday nursing practice.

■ Successful nurse–physician relationships require a mutual presence of three essential features: competence, respect, and trust. Reasons for strained nurse–physician relationships include the hierarchical way ethical care decisions are made, competency and quality-of-care conflicts, and lack of communication.

■ Nurses often treat other nurses in hurtful ways. Many refer to this hurtful treatment as tall poppy syndrome or horizontal violence, but more recently it is referred to as workplace bullying, which involves interpersonal conflict, harassment, intimidation, harsh criticism, sabotage, and abuse.

■ If nurses’ stress and traumatic feelings are not managed properly, the effects will lead to unproductive coping and unresolved issues. These traumatized nurses will function as the walking wounded.

■ Wounded healers are informed by their own traumatic and difficult experiences that occur in the process of their everyday work, and they transform their raw wounds to a healed scar that enables a better understanding of others’ pain.

■ Nurses can strengthen a sense of community within the profession by working to heal the disharmony and transform their anger to support nurses’ accomplishments rather than treating them as tall poppies that must be cut down.

■ Nurses and physicians value their ability to use social media to retrieve minute-to-minute information, share knowledge, and build professional relationships. The use of social media has many benefits and also numerous perils.

■ Social networking invokes questions of confidentiality and privacy when nurses, physicians, and patients share information with each other. The public nature of social communication poses ethical and legal problems, and solutions are usually unclear.

■ Blurred-line behaviors and definite crossings occur as a result of the use of social media when it invades the moral spaces of others and violates their privacy. What nurses could view as a flippant or innocent social media comment may be perceived by others as vulgar, inflammatory, or threatening.

■ The growing number of employee violations worldwide that arise from social media are pushing employers to initiate disciplinary courses of action against their personnel and enforce new policies to prevent inappropriate behaviors.

KEY POINTS (continued)

92 Chapter 3 Ethics in Professional Nursing Practice

References American Association of Critical-Care Nurses. (2004).

The 4A’s to rise above moral distress: Ask, affirm, assess, act [PDF file]. Retrieved from http://www .emergingrnleader.com/wp-content/uploads/2012 /06/4As_to_Rise_Above_Moral_Distress.pdf

American Association of Critical-Care Nurses (AACN). (2008). AACN public policy position statement on moral distress. Aliso Viejo, CA: Author.

American Medical Association (AMA). (2011). Opinion 9.124: Professionalism in the use of social media. Re- trieved from https://journalofethics.ama-assn.org /article/ama-code-medical-ethics-opinions-observing -professional-boundaries-and-meeting-professional

American Medical Association (AMA). (2012). Virtual mentor: The code says: The AMA Code of Medical Ethics’ Opinions on Informing Patients. American Medical Association Journal of Ethics, 14(7), 555–556. Retrieved from https://journalofethics.ama-assn.org /sites/journalofethics.ama-assn.org/files/2018-05 /coet1-1207.pdf

American Medical Association (AMA). (2018). With­ holding information from patients: Code of medical ethics opinion 2.1.3. Retrieved from https://www.ama -assn.org/delivering-care/withholding-information -patients

American Nurses Association (ANA). (2010a). Nurs­ ing: Scope and standards of practice (2nd ed.). Silver Spring, MD: Author.

American Nurses Association (ANA). (2010b). Nursing’s social policy statement: The essence of the profession (3rd ed.). Silver Spring, MD: Author.

American Nurses Association (ANA). (2011). ANA’s prin­ ciples for social networking and the nurse: Guidance for registered nurses [PDF file]. Retrieved from https:// www.nursingworld.org/~4af4f2/globalassets/docs /ana/ethics/social-networking.pdf

American Nurses Association (ANA). (2012). Position statement: Nursing care and do not resuscitate (DNR) and allow natural death (AND) decisions [PDF file]. Re- trieved from https://www.nursingworld.org/~4ad4a8 /globalassets/docs/ana/nursing-care-and-do-not -resuscitate-dnr-and-allow-natural-death-decisions.pdf

American Nurses Association (ANA). (2015). Code of ethics for nurses with interpretive statements. Silver Spring, MD: Author.

American Nurses Association (ANA). (2016). Position state­ ment: Nurses’ roles and responsibilities in providing care and support at the end of life [PDF file]. Retrieved from https://www.nursingworld.org/~4af078/globalassets /docs/ana/ethics/endoflife-positionstatement.pdf

Bazarko, D. (2014). Mindfulness and you: Being present in nursing practice. Silver Spring, MD: American Nurses Association.

Beauchamp, T. (2013). The concepts of beneficence and benevolence (Part 1, para. 2). Retrieved from https:// plato.stanford.edu/entries/principle-beneficence/

Beauchamp, T. L., & Childress, J. F. (2012). Principles of biomedical ethics (7th ed.). New York, NY: Oxford University Press.

Benner, P., Hooper-Kyriakidis, P., & Stannard, D. (1999). Thinking-in-action and reasoning-in-transition: An overview. Clinical wisdom and interventions in critical care: A thinking­in­action approach (pp. 1–26). Phila- delphia, PA: Saunders.

Bennett, W. J. (Ed.). (1993). Honesty. In W. J. Bennett (Ed.), The book of virtues: A treasury of great moral stories (pp. 597–662). New York, NY: Simon & Schuster.

Bickoff, L., Sinclair, P. M., & Levett-Jones, T. (2017). Moral courage in undergraduate nursing students: A litera- ture review. Collegian, 24, 71–83.

Brenan, M. (2017). Nurses keep healthy lead as most hon­ est, ethical professional. Retrieved from https://news .gallup.com/poll/224639/nurses-keep-healthy-lead -honest-ethical-profession.aspx

Broadie, S. (2002). Philosophical introduction. In S. Broadie & C. Rowe (Eds.) & C. Rowe (Trans.), Aristotle Nicomachean ethics (pp. 1–91). New York, NY: Oxford University Press.

Bu, X., & Jezewski, M. A. (2006). Developing a mid-range theory of patient advocacy through concept analysis. Journal of Advanced Nursing, 57(1), 101–110.

Buppert, C. (2018, January 3). Should I interact with patients on social media? Retrieved from https://www.medscape .com/viewarticle/890658

Butts, J. B. (2011). PRISMS—acronym for key action verbs for strategies to promote patient advocacy. Unpublished raw data.

Christie, W., & Jones, S. (2013). Lateral violence in nursing and the theory of the nurse as wounded healer. Online Journal of Issues in Nursing, 19(1). doi:10.3912/OJIN .Vol19No01PPT01

Churchman, J. J., & Doherty, C. (2010). Nurses’ views on challenging doctors’ practice in an acute hospital. Nursing Standard, 24(40), 42–47.

Conti-O’Hare, M. (2002). The wounded healer: Theoret- ical perspectives. The nurse as wounded healer: From trauma to transcendence (pp. 33–50). Sudbury, MA: Jones and Bartlett Publishers.

Corley, M. C. (2002). Nurse moral distress: A proposed the- ory and research agenda. Nursing Ethics, 9(6), 636–650.

Corley, M. C., Minick, P., Elswick, R. K., & Jacobs, M. (2005). Nurse moral distress and ethical work envi- ronment. Nursing Ethics, 12(4), 381–390.

Croke, E. M. (2003). Nurses, negligence, and malpractice: Continuing education. American Journal of Nursing, 103(9), 54–63.

93References

Davis, A. J., Fowler, M. D., & Aroskar, M. A. (2010). Ethical dilemmas and nursing practice (5th ed.). Boston, MA: Pearson.

Diemert, C. (2012). Protect your practice: Know your legal and ethical obligations. Nursing practice and educa- tion. The Minnesota Nursing Accent, 84(1), 6–7.

Edson, M. (1999). Wit. New York, NY: Faber & Faber. Ehrenreich, B., & English, D. (1973). Witches, midwives,

and nurses: A history of women healers. New York, NY: Feminist Press.

Erichsen, E., Danielsson, E. H., & Friedrichsen, M. (2010). A phenomenological study of nurses’ understanding of honesty in palliative care. Nursing Ethics, 17(1), 39–50.

Esterhuizen, P. (2006). Is the professional code still the cornerstone of clinical nursing practice? Journal of Advanced Nursing, 53(1), 104–113. (Original work published 1996)

Five nurses fired for Facebook postings. (2010, June 10). Re- trieved from http://www.10news.com/news/23857090 /detail.html

Fry, S., & Johnstone, M. J. (2002). Ethics in nursing practice: A guide to ethical decision making (2nd ed.). Oxford, UK: Blackwell Science.

Fry, S. T., Veatch, R. M., & Taylor, C. (2011). Introduction. In S. T. Fry, R. M. Veatch, & C. Taylor (Eds.), Case studies in nursing ethics (4th ed., pp. xv–xxix). Sud- bury, MA: Jones & Bartlett Learning.

Greater Good. (2010, May). The stars of our own movie. Retrieved from http://greatergood.berkeley.edu/ gg_live/science_meaningful_life_videos/speaker/jon _kabat-zinn/the_stars_of_our_own_movie/

Greater Good. (2014). Mindfulness defined. Re- trieved from http://greatergood.berkeley.edu/topic /mindfulness/definition#what_is

Groesbeck, C. J. (1975). The archetypal image of the wounded healer. Journal of Analytical Psychology, 20(2), 122–145.

Hakesley-Brown, R., & Malone, B. (2007). Patients and nurses: A powerful force. Online Journal of Issues in Nursing, 12(1). doi:10.3912/OJIN.Vol12No01Man04

Hamric, A. B. (2000). What is happening to advocacy? Nursing Outlook, 48(3), 103–104.

Hanks, R. G. (2007). Barriers to nursing advocacy: A con- cept analysis. Nursing Forum, 42(4), 171–177.

Holm, S. (2006). What should other healthcare profes- sions learn from nursing ethics? Nursing Philosophy, 7, 165–174.

Hwang, K.-K. (2001). The deep structure of Confucian- ism: A social psychological approach. Asian Philoso­ phy, 11(3), 179–204. doi:10.1080/09552360120116968

International Council of Nurses (ICN). (2012). The ICN code of ethics for nurses [PDF file]. Retrieved from http://ethics.iit.edu/ecodes/sites/default/files/Inter national%20Council%20of%20Nurses%20Code%20 of%20Ethics%20for%20Nurses.pdf

Jameton, A. (1984). Nursing practice: The ethical issues. Englewood Cliffs, NJ: Prentice Hall.

Johnson, C. E. (2012). Ethical interpersonal information. Organizational ethics: A practical approach (2nd ed., pp. 115–143). Thousand Oaks, CA: Sage.

Johnstone, M. J. (2008). Bioethics: A nursing perspective (5th ed.). Chatswood, Australia: Saunders Elsevier.

Kabat-Zinn, J. (2009). Wherever you go, there you are: Mindfulness meditation in everyday life [Adobe Digital Edition version]. New York, NY: Hyperion.

Kelly, C. (2000). Nurses’ moral practice: Investing and dis­ counting self. Indianapolis, IN: Sigma Theta Tau Inter- national Center Nursing Press.

Kidder, R. M. (1995). How good people make tough choices. New York, NY: William Morrow.

Laabs, C. (2011). Perceptions of moral integrity: Contra- dictions in need of explanation. Nursing Ethics, 18(3), 431–440.

Lachman, V. D. (2007). Moral courage: A virtue in need of development? MedSurg Nursing, 16(2), 131–133.

Lachman, V. (2010). Do-not-resuscitate orders: Nurse’s role requires moral courage. Journal of Medical Surgi­ cal Nursing, 19(4), 249–252.

Lipson, J. G., & Dibble, S. L. (2005). Introduction: Pro- viding culturally appropriate health care. In J. G. Lipson & S. L. Dibble (Eds.), Cultural and clinical care (pp. xi–xviii). San Francisco: University of California, San Francisco, Nursing Press.

Loprinzi, C. L., Schapira, L., Moynihan, T., Kalemkerian, G. P., von Gunten, C., & Steensma, D. (2010). Com- passionate honesty. Journal of Palliative Medicine, 13(10), 1187–1191.

Lutzén, K., & Nordin, C. (1993). Benevolence, a central moral concept derived from a grounded theory study of nursing decision making in psychiatric settings. Journal of Advanced Nursing, 18, 1106–1111.

Maes, S. (2003). How do you know when professional boundaries have been crossed? Oncology Nursing So­ ciety, 18(8), 3–5.

Malloy, D. C., Hadjistavropoulos, T., McCarthy, E. F., Ev- ans, R. J., Zakus, D. H., Park, I., . . . Williams, J. (2009). Culture and organizational climate: Nurses’ insights into their relationship with physicians. Nursing Ethics, 16(6), 719–733.

McCue, C. (2011). Using the AACN framework to alle- viate moral distress. Online Journal of Nursing Issues, 16(1). doi:10.3912/OJIN.Vol16No01PPT02

McKenna, B. G., Smith, N. A., Poole, S. J., & Coverdale, J. H. (2003). Horizontal violence: Experiences of regis- tered nurses in their first year of practice. Journal of Advanced Nursing, 42(1), 90–96.

National Council of State Boards of Nursing (NCSBN). (2011a). A nurse’s guide to professional boundaries [PDF file]. Retrieved from https://www.ncsbn.org /ProfessionalBoundaries_Complete.pdf

94 Chapter 3 Ethics in Professional Nursing Practice

National Council of State Boards of Nursing (NCSBN). (2011b). A nurse’s guide to the use of social media [PDF file]. Retrieved from https://www.ncsbn.org/NCSBN _SocialMedia.pdf

National Council of State Boards of Nursing (NCSBN). (2011c). State and territorial boards of nursing: What every nurse should know [PDF file]. Retrieved from https://www.ncsbn.org/What_Every_Nurse_Needs _to_Know.pdf

National Council of State Boards of Nursing (NCSBN). (2011d). White paper: A nurse’s guide to the use of social media [PDF file]. Retrieved from https://www .ncsbn.org/Social_Media.pdf

Pearce, E. C. (1975). The patient. A general textbook of nurs­ ing (19th ed., pp. 3–10). London, UK: Faber & Faber.

Pellegrino, E. D., & Thomasma, D. C. (1993). Phronesis: Medicine’s indispensable virtue. The virtues in medical practice (pp. 84–91). New York, NY: Oxford Univer- sity Press.

Pendry, P. S. (2007). Moral distress: Recognizing it to re- tain nurses. Nursing Economics, 25(4), 217–221.

Pinch, W. J. E. (2009). Honoring American nurse ethicists. Nursing Ethics, 16(2), 238–246.

Plante, T. G. (2004). Do the right thing: Living ethically in an unethical world. Oakland, CA: New Harbinger.

Ponte, P. R., Glazer, G., Dann, E., McCollum, K., Gross, A., Tyrrell, R., . . . Washington, D. (2007). The power of pro- fessional nursing practice—an essential element of pa- tient and family centered care. Online Journal of Issues in Nursing, 12(1). doi:10.3912/OJIN.Vol12No01Man03

Pullon, S. (2008). Competence, respect, and trust: Key features of successful interprofessional nurse-doctor relationships. Journal of Interprofessional Care, 22(2), 133–147.

Purnell, L. (2002). The Purnell model of cultural compe- tence. Journal of Transcultural Nursing, 13(3), 193–196.

Purnell, L. (2017). Models and theories focused on cul- ture. In J. B. Butts & K. L. Rich (Eds.), Philosophies and theories for advanced nursing practice (pp. 565–601). Sudbury, MA: Jones & Bartlett Learning.

Redman, B. K., & Fry, S. T. (2000). Nurses’ ethical con- flicts: What is really known about them? Nursing Eth­ ics, 7, 360–366.

Robb, I. H. (1916). Nursing ethics: For hospital and private use. Cleveland, OH: E. C. Koeckert. (Original work published 1900)

Rowe, C., & Broadie, S. (Eds.). (2002). Aristotle Nichoma­ chean ethics (C. Rowe, Trans.). New York, NY: Oxford University Press.

Schluter, J., Winch, S., Holzhauser, K., & Henderson, A. (2008). Nurses’ moral sensitivity and hospital ethical cli- mate: A literature review. Nursing Ethics, 15(3), 304–321.

Spector, R. E. (2016). Cultural diversity in health and illness (9th ed.). Upper Saddle River, NJ: Pearson.

Stein, L. I. (1967). The doctor-nurse game. Archives of General Psychiatry, 16(6), 699–703.

Stein, L. I., Watts, D. T., & Howell, T. (1990). The doctor-nurse game revisited. Nursing Outlook, 38(6), 264–268.

Stenburg, M. J. (1988). “The responsible powerless”: Nurses and decision about resuscitation. Journal of Cardiovascular Nursing, 3, 47–56.

Sulmasy, D. P., He, M. K., McAuley, R., & Ury, W. A. (2008). Beliefs and attitudes of nurses and physicians about do not resuscitate orders and who should speak to patients and families about them. Critical Care Medicine, 36(6), 1817–1822.

Thomas, S. P. (2009). Transforming nurses’ stress and anger: Steps toward healing (3rd ed.). New York, NY: Springer.

Tschudin, V. (2006). 30th anniversary commentary on Esterhuizen P. (1996) Is the professional code still the cornerstone of clinical nursing practice? Journal of Advanced Nursing 23, 25–31. Journal of Advanced Nursing, 53(1), 113.

Turnbull, D. (2003). Genetics and disability: Exploring moral space. Journal of Future Studies, 7(4), 3–14.

U.S. Department of Health and Human Services (HHS). (1996). Health Insurance Portability and Accountabil­ ity Act of 1996. Retrieved from https://aspe.hhs.gov /report/health-insurance-portability-and-accountability -act-1996

U.S. Department of Health and Human Services (HHS). (2003). Summary of the HIPAA privacy rule [PDF file]. Retrieved from https://www.hhs.gov/sites/default /files/privacysummary.pdf

Vaartio, H., Leino-Kilpi, H., Salanterä, S., & Suominen, T. (2006). Nursing advocacy: How is it defined by pa- tients and nurses, what does it involve and how is it experienced? Scandinavian Journal of Caring Science, 20, 282–292.

Volker, D. L. (2003). Is there a unique nursing ethic? Nurs­ ing Science Quarterly, 16(3), 207–211.

Wright, D., & Brajtman, S. (2011). Relational and embod- ied knowing: Nursing ethics within the interprofes- sional team. Nursing Ethics, 18(1), 20–30.

Zerubavel, N., & Wright, M. O. (2012). The dilemma of the wounded healer. Journal of Psychotherapy, 49(4), 482–491.

Zurik, L. (2012, May 22). Lee Zurik investigation: Nurse witnesses patient mistreatment. Retrieved from http:// www.fox8live.com/Global/story.asp?S=17219276

95References

97 © Gajus/iStock/Getty Images

PART II

Nursing Ethics Across the Life Span CHAPTER 4 Reproductive Issues and Nursing Ethics . . . . . . 99

CHAPTER 5 Infant and Child Nursing Ethics . . . . . . . . . . . . 125

CHAPTER 6 Adolescent Nursing Ethics . . . . . . . . . . . . . . . . . 145

CHAPTER 7 Adult Health Nursing Ethics . . . . . . . . . . . . . . . 169

CHAPTER 8 Ethics and the Nursing Care of Elders . . . . . . . . 185

CHAPTER 9 Ethical Issues in End-of-Life Nursing Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . 207

© Gajus/iStock/Getty Images

Reproductive Issues and Nursing Ethics Janie B. Butts

You and I are persons. More specifically, we are human persons—persons who are members of the

species Homo sapiens. But what does it mean to say that someone is a person? And what is the significance of being human?

—David DeGrazia, Human Identity and Bioethics (2005)

OBJECTIVES

After reading this chapter, the reader should be able to do the following:

1. Describe the current global and U.S. landscape of reproductive rights and reproductive health. 2. Explore the rationale for the worldwide morbidity rate of reproductive women. 3. Discuss the theories for full moral standing. 4. Explore the maternal–fetal conflict as it relates to the legal and ethical issues of human and

reproductive rights, autonomy, beneficence, nonmaleficence, and justice in health care and treatment.

5. Explore legal and ethical issues of abortion. 6. Compare the two sides of the debate on abortion: pro-choice groups and pro-life groups. 7. Distinguish between the ethical issues for each major type of assisted reproductive technology. 8. Discuss the rationale for couples to make informed choices about pregnancy and the type of

assisted reproductive technology in terms of genetic screening, testing, and counseling. 9. Discuss the ethical considerations for maternal substance abuse.

10. Integrate Bergum’s relational ethics into the essential interpretational aspects of the American Nurses Association Code of Ethics for Nurses with Interpretive Statements for the care of childbearing women.

99

CHAPTER 4

▸ Introduction to Ethics in Reproductive Health

Most organizations and healthcare profession- als support women’s rights and the availability of safe, effective, and accessible reproductive health care and contraceptive counseling. The Centers for Disease Control and Prevention (CDC, 2018b) adopted an overall mission of promoting optimal and equitable health for women and infants through public health efforts. Efforts to accomplish the mission include “surveillance, research, leadership, and partnership to move science to practice” (CDC, 2018b, Mission). Many individual countries around the world share the same val- ues as the United Nations’ goals for the rights of reproductive women and children. The In- ternational Conference on Population and De- velopment (ICPD) in Cairo in 1994 adopted a definition of reproductive health, which still stands today.

Reproductive Health Reproductive health is a state of complete physical, mental, and so- cial well-being and not merely the absence of disease or infirmity, in all matters relating to the reproductive system and to its functions and pro- cesses. Reproductive health therefore implies people are able to have a sat- isfying and safe sex life and that they have the capability to reproduce and the freedom to decide if, when and how often to do so. Implicit in this last condition are the right of men and women to be informed and to have access to safe, effective, afford- able and acceptable methods of fam- ily planning of their choice, as well as other methods of their choice for regulation of fertility which are not against the law. (United Nations Pop- ulation Fund, 2014b, p. 59)

Since 1994, many policies and programs have grown from the ICPD reproductive rights and reproductive health goals, but some crit- ical issues continue to persist in the areas of human rights, self-determination, exclusion, discrimination, and inequality (United Na- tions Population Fund, 2014a). Some of the major worldwide and U.S. organizations refer to these problems as being a complex social and human rights failure that needs immedi- ate attention.

A turning point for decisive action by world organizations and the United States was in 2010 after the release of an alarming report of compiled data from major world or- ganizations. Amnesty International’s updated spring 2010 report and an updated report in 2011, titled Deadly Delivery: The Maternal Health Care Crisis in the USA, reflected per- ilous statistics for women giving birth. For instance, maternal death in the United States worsened and fell from a ranking of 41 to 50 in the world, which placed the U.S. maternal death rate higher than 49 other countries. In fact, the United States was the only developed country with a rising maternal mortality rate, from 6.6 deaths per 100,000 in 1987 to 12.7 deaths per 100,000 in 2010. A majority of other countries reduced their maternal mortality ra- tios to result in a total global decrease to 34%. Even with the reductions in other countries, the global percentage is still reflective of an unacceptable maternal mortality rate, and it is largely preventable.

The unresolved nature of general global reproductive issues causes millions of women, men, and young people to suffer to varying degrees. A large proportion of these statistics relate to inadequate maternal health care, but a significant percentage of the statistics relate to women who would have preferred to use contraceptives to prevent pregnancy and sex- ually transmitted infections but did not have a choice or did not have access to modern forms of contraceptives. Further, many of the pregnant women who did not have access to modern forms of contraceptives resorted to

100 Chapter 4 Reproductive Issues and Nursing Ethics

having abortions with inadequate, unsafe care, which results in life-threatening health condi- tions and even mortality. Selected worldwide statistics on reproductive health illustrate this impact.

Reasons cited by Amnesty International (2011) for the issues causing the maternal health crisis include the following:

1. Discrimination and exclusion 2. Socioeconomic and bureaucratic

barriers 3. No choice about pregnancy 4. Lack of information about and

participation in maternal care and family planning

5. Inadequate postpartum care and staffing and inadequate quality protocols and accountability

These ongoing problems have perpetuated numerous legal and ethical issues associated with reproductive health, such as the challenge for providing basic beneficent-principled care for the mother or the mother and fetus dyad. Other legal and ethical issues, such as self- determination, human rights for choice and

equality, and discrimination, are rooted in the bioethical principles of autonomy and justice.

This chapter on ethics in reproductive health illustrates only selected topics, which include theories of moral standing of hu- mans; the maternal–fetal conflict in relation to abortion and pro-life and pro-choice pos- itions, reproductive technology, and genetic screening as well as nursing care of child- bearing women.

▸ Moral Standing of Humans

When someone mentions the phrase “moral standing of humans,” what comes to mind? Experts do not know exactly at what point full moral standing begins, but Veatch (2003) did note that people tend to view ethical issues of a late-term fetus and postnatal infant as more troublesome than ethical issues during the early phase of sperm and ova and then embryo. He pondered general questions: Are there specific physiological or neurological

RESEARCH NOTE: SELEC TED WORLDWIDE STATISTICS ON REPRODUC TIVE RIGHTS AND REPRODUC TIVE HEALTH

Did you know that . . .

■ More than 800 women die every single day with complications related to childbirth and pregnancies that could have been prevented?

■ In 2015 alone, approximately 303,000 women worldwide died during or following childbirth? ■ Ninety-nine percent of the worldwide maternal deaths occur in developing countries? ■ Approximately 222 million women in developing countries wish to prevent pregnancy, and they

are not using modern methods of contraception? ■ The worldwide rate of use in modern methods of contraception is 57% as compared to 30% in

developing countries? ■ Sixteen million adolescents give birth each year, and maternal mortality is the leading cause of

death for adolescents in poor and developing countries? ■ Between 1990 and 2015, maternal deaths declined by 2.3% worldwide?

United Nations Population Fund. (2014a). ICPD beyond 2014 issue brief: Health: Sexual and reproductive health and rights (SRHR) [PDF file]. Retrieved from https://www.unfpa.org/sites/default/files/resource-pdf/Sexual_and_Reproductive_Health_Rights.pdf; and World Health Organization (WHO). (2018a). Maternal mortality. Retrieved from http://www.who.int/news-room/fact-sheets/detail/maternal-mortality

Moral Standing of Humans 101

criteria signaling when full moral standing begins and ends? Could the criteria used for determining when death occurs be the same criteria to determine when life or full moral standing begins? To explore these questions requires more detailed discussion.

First, a general brief explanation is pro- vided for readers who want to develop a moral position on any topic. For example, moral philosophers have argued in a highly com- plex structure for and against and to differing degrees about every single view of when full moral standing begins and who or what qual- ifies as having moral standing. Therefore, it is not plausible for nurses and other readers to attempt to come to a strong belief about when full moral standing begins without sub- stantially more in-depth reading than what is presented here or without wide-ranging con- sideration of the historical arguments within the moral philosophy and bioethical literature. For application of ethical conduct in the ma- jority of everyday nursing decisions in ethics, nurses should refer to the Code of Ethics for Nurses with Interpretive Statements (American Nurses Association [ANA], 2015) and nursing ethics books, such as this one and others, for guidance. However, developing a justified be- lief, such as a stance on full moral standing, re- quires a much deeper reflection. Nurses must defend their position by reading a broad range of literature that supports the position taken. Taking an ethical stance always requires justi- fying the position by backing it up with sup- port from the moral experts and the premium and original literature on the ethical topic. This thought is threaded throughout this text.

There are many specific views about the exact point when full moral standing begins, how it fits with the concept of personhood, and whether moral standing denotes only hu- man beings or includes other beings. For the purpose of this chapter, moral standing refers only to human beings. One commonly held belief is that full moral standing indicates human beings have or sentient fetuses have the potential for privileges and the capacity to

reason and make autonomous decisions. They consider themselves the unique subjects of their own interests and experiences. “To have moral status is to bear direct or independent moral importance” (DeGrazia, 2008, p. 183). Moral importance entails human beings hav- ing certain properties possessed by all or most members of their group and the way in which human beings should conduct themselves to- ward other members of their group.

Like full moral standing, the concept of personhood is most complex, and philoso- phers frequently use the term personhood when deliberating about positions on moral standing. Numerous conflicting positions on personhood exist, some with a legal designa- tion. Many, but not all, philosophers believe that personhood denotes a capacity for hu- man beings to have complex forms of con- sciousness, in which case personhood would indicate already-born humans, and in fact, it occurs some time later when complex think- ing actually develops. Most philosophers agree that sentience of the fetus is required for a determination of some degree of moral standing, but how is personhood related to moral standing? Personhood, defined in this paragraph as an already-born human being, would not enter into the picture during fetal development. From a more complete list, only a few of the common theories of full moral standing related to the embryo and fetus have been selected. The explanations are only brief summaries and do not include personhood as a moral standing view or the for-and-against arguments of each theory.

▸ Potentiality View Potentiality includes two positions: the ba- sic potentiality view and a broader position known as the future-like-ours argument. The potentiality view means a fetus, from the time of conception, possesses the potential to be a person with the same rights and pro- tections that already-born persons appoint

102 Chapter 4 Reproductive Issues and Nursing Ethics

to themselves (Feinberg, 1984). According to this view, a fertilized egg does not have the at- tributes of a person yet, but if it is allowed to develop, it will become a sentient being with rationality. A sentient being is a person with awareness, perception, and a capacity for feel- ings. The overall view of potentiality generally encompasses two assumptions: each person originates as a single-cell zygote at the time of conception, and full moral standing begins at origination. This potentiality position is a ba- sic view held by some moral philosophers.

A broader argument evolving from the basic potentiality view is the future-like-ours argument (Marquis, 1989). Pro-life groups have used the future-like-ours argument as a strong contention to suggest that, just like living human beings, a fetus has the poten- tial to become a person with a future full-life experience and the possibility of successful self-actualization goals, a normal life span, ra- tional decision-making abilities, and relation- ships. This argument indicates a potential for a fetus, once born, to have a future experience of life’s full offerings.

Biological View The biological position is a scientific-based ap- proach for determination of moral status, but this view consists of several theories, each one guided by the biological stage of development of a fetus. DeGrazia (2006) endorsed one view of the biological theory of moral standing, which is presented here. As previously stated, many moral philosophers and bioethicists have believed that sentience of the fetus is essential to determination of moral standing and to have sentience requires the fetus to have awareness, perception, and a capacity for feelings.

Evidence indicates a single-cell zygote is derived from the sperm and ovum; the single-cell zygote is a nonsentient entity and has not yet come into existence. The inference of this biological view is that a single-cell zy- gote does not come into being until the cell has completed the division process, at which time

the entity becomes a uniquely individuated human organism (DeGrazia, 2006). During the 2-week division process after the forma- tion of the single-cell zygote, the embryo has the potential to split into two or more identi- cal embryos, known as identical twinning (or multiembryos). Nonidentical fraternal twins are different because they are derived from two separate fertilized eggs, but each one of the embryos has the potential to split into twin embryos that would become identical twins. Based on the process, the single-cell zygote cannot be uniquely individuated until the di- vision has been completed, and

if not uniquely individuated, the zy- gote is not yet a unique member of our basic kind (according to the bi- ological view): human organism. By the time all parts of the embryo are differentiated and twinning is pre- cluded, one of us has come into ex- istence. (DeGrazia, 2006, pp. 51–52)

After it has been uniquely individuated, the being becomes a member of the human or- ganism with moral standing.

Interests View The possession of interests is essential to hav- ing rights (Feinberg, 1984). Steinbock (1992, 2006) and DeGrazia (2006) extended the interests–rights requirement to the concepts of sentience and moral standing. In other words, sentience is central to having moral standing, rights, and interests. They believe the more important question to be answered is “Who really counts morally?” The interests view requires that a being must have rights and in- terests at stake, which implies sentience and some degree of moral standing; those inter- ests must matter morally to the being, and the being must be sentient enough to know what could be done to it. The absence of interests means that rights cannot be assumed. In other words, only sentient beings can have a stake

Potentiality View 103

in something; nonsentient beings do not have any interests of their own, and moral stand- ing would be difficult to determine. Steinbock (2006) explained her position:

Embryos are not mere things. They are alive and have the potential to be- come beings with interests—indeed to become people, like you and me. But their potential to become persons does not give them the moral status or the rights of actual persons. Early em- bryos, indeed early-gestation fetuses, have no consciousness, no awareness, no experiences of any kind, even the most rudimentary.  .  . . Within even the precursor of a nervous system . . . or without consciousness, they can- not have desires; without desires, they cannot have interests. (p. 29)

These different approaches to full moral standing, among the many others not men- tioned here, illustrate some profound dis- agreements. Philosophers of moral standing theories attempt to answer the following questions: When do we come into existence, or sentience? Does life begin at conception? Do sentience and full moral standing occur simultaneously?

▸ Maternal–Fetal Conflict

Maternal–fetal conflict occurs “when a preg- nant woman’s interests, as she defines them, conflict with the interests of her fetus, as defined by the woman’s physician” (Tran, 2004, p. 76). A maternal–fetal conflict can occur when a pregnant woman’s treatment is hazardous to the fetus or when a pregnant woman does not comply with a physician’s recommendations that are traditionally believed to nurture the fetus’s growth and development. This ethical issue relates to each person’s right to life versus the possibility of bringing harm to one person

when treating the other of the two biologically connected persons. In years past, when physi- cians and nurses cared for a pregnant woman, they considered in detail the mother and fetus as one patient unit. Physicians contemplated all viewpoints of the care and treatment of the whole patient, both the mother and fetus to- gether, by comparing the perceived benefits of the whole compared with perceived combined burdens. The dual-care concept gained promi- nence during the same era of the development of fetal medicine and treatment (Iris, Amalia, Moshe, Arnon, & Eyal, 2009).

Historically, some of the reasons for maternal–child conflict included lifestyle choices and issues, such as abortion and use of substances, refusal of treatment by the mother, issues of maternal brain death, and issues sur- rounding occupational health (Coutts, 1990; Post, 1996). Authors commonly have cited abortion as their first example among the var- ious reasons for maternal–fetal conflict, but a few experts believe abortion is not even a maternal–fetal conflict (Coutts, 1990).

Society, nurses, and physicians share an overall goal of optimal pregnancy outcomes. However, with the dual-care frame of mind, physicians and nurses should consider the best care and medical treatment possible for the mother and fetus separately and distinctly, yet they should realize the biological link. The ba- sic dispute in the maternal–fetus conflict is hu- man rights for each, resulting in ethical issues embedded in a dilemma between the principle of respect for autonomy and the moral stand- ing of the woman and a principle of respect for autonomy of the fetus. Other issues sur- rounding the maternal–fetal conflict focus on a dilemma between the principle of respect for the autonomy of the woman and the principle of nonmaleficence of the fetus. Ludwig (2008) posed these questions:

■ What happens when medical therapy is indicated for one patient, yet it is contra- indicated for the other?

■ When does the fetus or newborn become a person?

104 Chapter 4 Reproductive Issues and Nursing Ethics

■ People have rights. Does a fetus have rights? ■ What about obtaining court orders to

force pregnant women to comply?

▸ Conflict of Rights Issues

Reproductive Rights Women’s decisions to have a baby, not to have a baby, or to have an abortion are among the most critical decisions she will make in her life. Although a woman may involve signifi- cant others, this type of decision is intensely personal, and it is one she will hope to make on her own without coercion or mandates from healthcare professionals or federal and state governments.

One of the ethical questions is “Does a woman have a right to have a child?” Infer- tility, for instance, is not a life-threatening disorder, but it does cause undue suffering and shame to millions of women and cou- ples. A legal question is “If there is a right to reproduce, should it include the right to un- limited and scarce resources?” As technology advances, more questions begin to surface; for example, should fertility medicine be regu- lated? Healthcare professionals must attempt to resolve the question of how society should strike a balance among the various options of procreation, reproduction, testing, and mater- nal rights.

Many times, legal rights and moral rights overlap because lawmakers often legislate the policies into laws to enforce certain rights. Moral rights include liberty rights and claim rights (Mahoney, 2007). Liberty rights, some- times called negative rights, are those rights a person can impose on others without a fear of someone or some group preventing those rights from being exercised. Liberty rights in- clude freedom of speech, autonomy, privacy, and others as stated in the first 10 amendments of the U.S. Constitution. Health care in the United States is a liberty right.

Claim rights, sometimes called posi- tive or welfare rights, are those rights owed to people through active and positive steps taken by others or groups to ensure the claim is met. There are two population exceptions in the United States to healthcare liberty rights— poor people and elders—and they fall under claim rights. Social federal and state programs help ensure fulfillment and preservation of claim rights.

If there is a right to reproduction, is it a lib- erty right, a claim right, or both? In addition, does an unborn fetus or child have healthcare rights? Answers to these questions remain unclear, but most experts agree all healthcare rights are of critical importance to everyone. Reproductive rights are about human rights, quality health care, choice, liberation from en- forced sexual pleasures and abuse, and popula- tion growth and distribution.

Civil Liberties and Legal Decisions Historical records indicate that multiple and com- plex ethical, legal, and political issues have arisen, including criminalization of pregnant women. Courts have ordered physician-sanctioned ce- sarean deliveries for the sake of the fetus against the mother’s wishes; pregnant women have been prosecuted for their abuse of alcohol and other drugs; and courts have ordered pregnant women to receive blood transfusions in life-threatening or other conditions, even when the women were refusing blood transfusions because of religious beliefs (American Civil Liberties Union [ACLU], 1997; Chandis & Williams, 2006). Issues of abor- tion and forced treatments tap into questions of whether the fetus is viewed as a person, has a right to life, or is viewed as having equal moral status as the mother versus a pregnant woman’s right to bodily integrity and the right to privacy, dignity, and choice.

It is important for the reader to know the ACLU’s opinion of government officials tam- pering with women’s rights during pregnancy. In a 1997 article titled “Coercive and Punitive

Conflict of Rights Issues 105

Governmental Responses to Women’s Con- duct During Pregnancy,” the ACLU created strong statements, as highlighted in the quoted passages in the previous Legal Perspective box.

Since the ACLU’s position in 1997, vari- ous states have proceeded with laws or rulings criminalizing mothers for certain behaviors. In 2013, the State of Tennessee passed the Tennes- see Fetal Assault Law (SB1391) as a 2-year trial providing for the prosecution of any woman illegally using a narcotic drug while pregnant if her child was born addicted to or harmed by the narcotic drug. The first woman in Tennes- see to be arrested for a misdemeanor used an illegal drug while pregnant (ACLU, 2014). The woman admitted to using methamphetamine after the baby tested positive for it. Castelli, the director of the ACLU, stated that the new law is unconstitutional and singles out mothers with substance abuse problems. The other side of the argument involves prosecutors and law

enforcement officers who argued in support of the law because they believe it is the only way to help the mothers get into a drug treatment program and prevent harm to their babies (Kemp, 2014).

The ACLU in Tennessee and medical experts immediately began to challenge this criminal law. In January 2017 after the trial period had concluded, the State of Tennessee discontinued the Tennessee Fetal Assault Law (SB1391) as no longer in effect. Republican Andrew Farmer of East Tennessee stated that he had heard too many stories of addicted women who were scared away from prena- tal care because they feared they would have jail time (Farmer, 2016). Medical experts and some law officials believed that exercising the law had many unintended consequences.

Since the latter part of the 20th century, astounding advances have occurred in re- productive technologies, so much so that

LEGAL PERSPEC TIVE: WOMEN’S REPRODUC TIVE RIGHTS VIOLATED

A decade ago [in the 1980s], we saw a rash of cases in which government officials zealously embraced a misguided mission to protect fetuses by attempting to control the conduct of pregnant women. . . . Inevitably, such actions backfire: women who fear the government’s “pregnancy police” will avoid prenatal care altogether, and both they and their fetuses will suffer as a result.

The ACLU . . . defended many of the women who were subject to coercive or punitive state actions. We won case after case, and attempts to bully and punish pregnant women eventually diminished.

Recently, however, we have seen this dangerous trend revive. (Arresting the Pregnancy Police) Coercive and punitive treatment of pregnant women violates the civil liberties of individual women

and fosters distrust of health care providers. . . . An influential 1988 Illinois Supreme Court decision, Stallman v. Youngquist, warned courts not to make “mother and child . . . legal adversaries from the moment of conception until birth.” Rejecting a child’s claim of damages from its mother, the court wrote:

Holding a mother liable for the unintentional infliction of prenatal injuries subjects to state scrutiny all the decisions a woman must make in attempting to carry a pregnancy to term, and infringes on her right to privacy and bodily autonomy.

Although we may not always approve of a woman’s conduct during pregnancy, we must insist women be offered educational, social, and medical services that can persuade them to make the wisest and healthiest choices. Coercion is both a counterproductive and an illegal alternative. (The Implications for Reproductive Rights in General)

American Civil Liberties Union (ACLU). (1997). Coercive and punitive governmental responses to women’s conduct during pregnancy. Retrieved from https://www.aclu.org/other/coercive-and-punitive-governmental-responses-womens-conduct-during-pregnancy

106 Chapter 4 Reproductive Issues and Nursing Ethics

they have sparked public, ethical, and polit- ical scrutiny concerning a woman’s private choice (autonomy) versus public regulation and law (Harris & Holm, 2000). Sometimes, nurses believe they are caught in the middle, and they do not know how to manage the care related to the maternal–fetal conflict. In Pro- visions 1 and 2 of the Code of Ethics for Nurses with Interpretive Statements, the ANA (2015) clarified nurses’ roles in terms of appropriate ethical behavior and action toward patients. Included in these three code provisions are concepts to which nurses are ethically bound, such as the respect for human dignity, the patient’s right to self-determination, a com- mitment to the patient’s interest, the respect of privacy and confidentiality, and the protec- tion of the patient’s rights. Individual nurses need to make certain they follow these eth- ical guidelines in a nonjudgmental and car- ing way. Protecting the woman’s rights and decisions and maintaining dialogue of the highest quality among the woman, her family, and other healthcare professionals are most critical because of the deeply sensitive issues women face in reproduction, procreation, or abortion. The manner in which nurses inter- act and intervene with these patients often will affect the patient’s health and emotional outcomes.

▸ Abortion The center of the pro-choice and pro-life de- bates is about human rights: the right to life of the fetus or the woman’s right to control her own body by choosing whether to carry a pregnancy to term, have a baby, and parent it. The debaters of each group argue about the position they support by providing rationales and justifications about when they believe life begins and sentience and moral standing oc- cur during fetal development.

Because pro-choice and pro-life (also known as anti-choice) debaters justify their claims and arguments on each side, the

dilemma is deadlocked with no hope for reso- lution. These diametrically opposed sides have ethical, political, legal, and religious implica- tions. Opposition even occurs regarding the use of labels. The opposing groups have histor- ically been labeled as pro-choice and pro-life, but as both sides tightened the reins on their beliefs and values, the pro-choice groups be- gan labeling pro-life groups as anti-choice. The rationale behind this decision was that pro-life groups were making claims about pro-choice groups not valuing life. The pro-choice groups strongly believe that if the term pro-life could be replaced by the term anti-choice, then the accusations made by pro-life groups about the beliefs of pro-choice groups would be dimin- ished. The current status of this controversy is mostly unchanged. Some pro-life groups refer to themselves as pro-life, and some pro-choice groups refer to pro-life groups as anti-choice. The author of this chapter takes the stance that the argument about labels is largely irre- solvable. Therefore, the terms pro-choice and pro-life are used because of their widespread use in the media.

Abortion, especially in the first trimes- ter, is legal in many countries, including the United States, but intense moral and political scrutiny and even legal action have contin- ued to surface since the Roe v. Wade decision of January 22, 1973. In Roe v. Wade, the U.S. Supreme Court ruled that states cannot make laws banning abortions in the first or second trimester, except for certain reasons. In the third trimester, states can make laws banning abortions; unless a third-trimester abortion is critical to a woman’s survival, the woman is re- quired to follow her state law.

In 1971, 2 years before the Roe v. Wade de- cision, Judith Jarvis Thomson (1971), a moral philosopher, wrote a classic and well-known article titled “A Defense of Abortion,” which served as a foundation for the abortion de- bate. At the beginning of her article, Thom- son agreed that every person has a right to life and this right is extended to fetuses. Then, to make her argument, she stated that she was

Abortion 107

pretending a fetus is a person because it, in fact, becomes a human person at some time before birth. Her conclusive premise was, even assuming the fetus has a right to life, the fe- tus morally could not infringe on the mother’s own right to control her body or use her body to stay alive.

Abortion is a term that sometimes refers to induced abortion, which is the result of a woman’s intentional termination of a preg- nancy either artificially or therapeutically (MedicineNet.com, 2016). Induced abortion is the core of the pro-choice and pro-life de- bate. The debaters argue with political fer- vor and bitterness, sometimes resulting in violence, about the legality or rightness and wrongness of a woman’s choosing to termi- nate her pregnancy. In the pro-choice view, abortion is almost always permissible and can be justified.

From 1973, after Roe v. Wade, to Sep- tember 1, 2014, there have been more than 54  million registered abortions in the United States. Since 1980, there have been more than 1.5 billion abortions worldwide (Guttmacher Institute, 2018a). In a 4-year span between 2010 and 2014, there have been more than 56  million abortions each year worldwide. Of these abortions, 25.1  million were unsafe each year, 17.1  million were less safe, and 8  million were least safe (WHO, 2018b). Of the unsafe abortions in developed countries, 30 million women die for every 100,000 abor- tions. Deaths from unsafe abortions more severely affect women in developing coun- tries, especially in Africa. Deaths from unsafe abortions in women from Africa total 62%, which is disproportionate as compared to other developing countries (WHO, 2018b). Documented reasons for abortions include rape, incest, physical life of mother, physical health of mother, fetal health, mental health of mother, and personal choice. Personal choices included too young, not ready for responsibil- ity, too immature, economic, to avoid adjust- ing life, mother single or in poor relationship, and enough children already.

Federal Abortion Ban Preventing Partial-Birth Abortion The National Right to Life Committee (NRLC) and other pro-life groups (also known as anti-choice groups) have campaigned for years for equal rights and protections for the unborn fetus, based on the viewpoint of the fetus as a human life—one that, if not a per- son yet, has the potential to be a person. On November 5, 2003, President George W. Bush signed into law the Partial-Birth Abortion Ban Act of 2003.

Partial-birth abortion, a nonmedical term, refers to late-term or third-trimester abortions by way of a procedure called intact dilation and extraction (abbreviated as intact D&E). In other words, a late-term abortion consists of physicians delivering a live fetus vaginally, yet only partially, for the sole pur- pose of terminating a pregnancy by way of an intact D&E. The term partially means that for head presentation, the entire head must be outside the mother’s vagina before the fetus can be terminated, and for breech presenta- tion, any part of the fetus’s trunk past its navel must be outside the mother’s vagina before the fetus can be terminated.

Several states agreed with the ACLU (2007) by striking down the federal partial-birth abor- tion ban, ruling it unconstitutional, whereas other states are pushing for the abortion ban to apply as early as 12 or 13 weeks’ gestation, a push viewed by the ACLU as deceptive. The time line of 12 to 13 weeks trickles into the first trimester of pregnancy, meaning that the term partial-birth abortion could no longer be used; rather, the term abortion must be applied.

The U.S. Supreme Court reviewed the Federal Abortion Ban because of the strike downs by several states, even though some states are continuing to support the ban, which leaves unresolved issues, anger, and moral fanaticism on each side of the argu- ment. The public anxiously awaited the fi- nal decision, and on April 18, 2007, under the direction of Chief Justice John Roberts,

108 Chapter 4 Reproductive Issues and Nursing Ethics

the U.S. Supreme Court announced a five to four decision to uphold the Federal Abortion Ban. According to the ACLU (2007), the U.S. Supreme Court’s decision of upholding the ban undermines the core tenet of Roe v. Wade: a woman’s health must remain unrivaled. No health exception for women was written in the law. In a written dissent, Justice Ruth Bader Ginsburg made a strong criticism by warn- ing the majority justices they were placing women’s health in danger and undermining women’s battle for equality. Justice Ginsburg stated, “the Act, and the Court’s defense of it, cannot be understood as anything other than an effort to chip away at a right declared again and again by the Court—and with increasing comprehension of its centrality to women’s lives” (ACLU, 2007, para. 5). For a condensed historical time line of the Federal Abortion Ban, please refer to the National Abortion Federation (2010).

Since the 2007 Supreme Court decision, each state continues to develop laws to limit the circumstances in which a woman may have an induced abortion (Guttmacher Institute, 2018b). Each state has one or more codifica- tions and regulations.

Pro-Choice Versus Pro-Life Views Pro-Choice View In the pro-choice view, a common argument is that abortion is legally permissible, regardless of the morality involved. A woman has a basic right to make up her own mind about choices of pregnancy or abortion, and her right always prevails over any other right, including any fe- tal rights. At the core of the pro-choice stance is the right of privacy based on the U.S. Con- stitution, U.S. Declaration of Independence, and the worldwide Universal Declaration of Human Rights. Sentience, moral status, and personhood are among the various arguments used in the pro-choice view.

To the pro-choice group, abortion is morally and legally permissible. Many people contend a fetus that cannot survive outside a woman’s body is not considered viable; there- fore, a fetus cannot override the woman’s right to choose an abortion when the fetus is not vi- able outside the womb. In this pro-choice view, there are various opinions about the beginning of life. Two of those opinions are (1) the fetus does not have human life until the mother is in the 17th week of gestation, or (2) the fetus

LEGAL PERSPEC TIVE: SUMMARY OF STATE REGULATIONS FOR HAVING AN INDUCED ABORTION

■ Licensed physician and performed in hospital: required by a majority of states ■ Gestational limits: prohibited by 43 states except where necessary for mother’s life ■ Partial-birth abortion: prohibited by 20 states ■ Healthcare providers and hospitals allowance of refusal to participate in abortion: allowed by a

majority of states ■ Waiting periods required before an abortion procedure: mandated by 27 states ■ Parental involvement mandated: required by 37 states to have some type of parental involvement

if a minor is asking for an abortion procedure, required by 26 states for one or both parents to consent to the procedure if a minor, and required by 11 states one or both parents should only be notified

Three other regulations delineated by states include public funding allocations, private insurance restrictions, and mandated counseling before an abortion.

Data from Guttmacher Institute. (2018b). An overview of abortion laws. Retrieved from https://www.guttmacher.org/print/state-policy/explore /overview-abortion-laws

Abortion 109

with sentience and moral status has human life at the 7th month of gestation, when its nervous system has fully developed.

The pro-choice group supports the use of emergency contraceptives. Emergency con- traception (EC) is defined as postcoital birth control measures preventing pregnancy (Op- tions for Sexual Health, 2016). Two types of EC exist, which are both considered early abortion, after sexual intercourse methods for an unin- tended pregnancy. One type is known as the morning-after pill, which includes ulipristal ac- etate (Ella), progestin pill (Plan B), or the Yuzpe method (combined dose of birth control pills). The other type of EC is the use of a copper IUD, which is 99% effective. A healthcare provider needs to insert the copper IUD, as either a post- coital procedure or a method to prevent preg- nancy before anticipated sexual intercourse.

The EC morning-after pills should not be labeled as the abortion pill (Planned Par- enthood, 2018). The FDA approved the over-the-counter sale of morning-after pills for women aged 15 and older. The morning-after pills, such as progestin only, can be effective if taken within 72 hours of unprotected sex- ual intercourse. Ulipristal acetate pills can be taken up to 5 days after unprotected sex.

The arguments do not ever cease as to when a fetus becomes a person—at concep- tion, when the heartbeat develops, when the nervous system develops, when it is consid- ered viable outside the womb, or when the fe- tus begins the process of thinking. From the personhood perspective, people should have rational thinking and possess the highest pos- sible moral importance.

Pro-Life View In the pro-life group, the personhood view stems from a fundamental understanding of the embryo or fetus as a person. Most pro-life groups argue that life and full moral status begin at conception and abortion is immoral and mur- derous and should be illegal. According to this view, the embryo, from the time of conception and throughout the development of the fetus, has the same right to life due each person living outside the womb. Historically, unless a moth- er’s life was threatened, the embryo (or fetus) was protected because it is worthy of respect yet vulnerable to murder and harm. This protection begins at the time of conception, but it especially applies in the second and third trimesters.

Most pro-life groups believe that life be- gins at conception as a single-cell zygote and moral status is acquired at conception; the belief is taken based on faith values and cultural ori- gins rather than scientific, biological evidence. Opinions vary among pro-life groups as to when personhood begins in lieu of conception (see Ethical Reflection: Pro-Life Views on When Personhood Begins for some of these times).

Pro-life groups sometimes quote sev- eral passages from the Bible, but the Roman Catholic Church’s position about abortion is a little more complex (Harris & Holm, 2003). According to the Roman Catholic Church, the whole issue regarding the morality of abortion stems from the greater question of when the fetus receives a soul. Because many interpre- tations of the Bible exist, the Roman Catho- lic Church has taken a general stance on this moral issue, as Harris and Holm (2003) stated,

ETHICAL REFLEC TION: PRO-CHOICE VIEWS ON EQUAL MORAL STANDING FOR MOTHER AND FETUS

Pro-choice groups believe if a woman and fetus are warranted as having equal moral standing, as believed by pro-life groups, a woman’s rights are weakened, causing the woman and the fetus to be at odds with each other. Some pro-life groups argue that in special circumstances the woman may have an abortion, such as in cases of incest or rape or if the infant is severely deformed.

What are your thoughts? Are these circumstances viewed as a double standard, meaning abortion is accepted when the procedure is subjectively needed?

110 Chapter 4 Reproductive Issues and Nursing Ethics

“because killing is such a grave moral wrong, one should act cautiously and presume that there may be ensoulment from conception. . . . Abortion and the destruction of embryos should therefore be treated as the killing of an ensouled being” (p. 122).

Speaking Out Legal and moral arguments about abortion and women’s reproductive rights continue. NARAL Pro-Choice America and the National Right to the Life Committee (NRLC,  n.d.)

ETHICAL REFLEC TION: PRO-LIFE VIEWS ON WHEN PERSONHOOD BEGINS

■ At conception ■ After the fertilized egg splits into two cells a few days after conception ■ Twelve days after conception, when the fertilized ovum has attached itself to the uterine lining ■ Two weeks from conception, when the yellow streak develops, which is the neural tube that

protects the backbone and prevents splitting into two embryos (before the yellow streak develops, the embryo may split into identical twins)

■ Three weeks from conception as the fetus begins to develop body parts ■ Five weeks or sooner from conception, when the heartbeat begins ■ Seven weeks from conception as the first brain waves are sensed ■ Two months, and again at 3 months, from conception when the fetus begins to resemble a

human being ■ Four months from conception, when the fetus has its own differentiating characteristics ■ Twenty-three weeks from conception, when the fetus is said to become viable ■ Twenty-seven weeks from conception, when the fetus’s higher brain begins to function ■ At birth, only after delivery and breathing is separate from the woman’s body

What are your thoughts? What is your opinion on when the fetus becomes a person?

Information on Surrogacy. (n.d.). Timeline of fetal development – Week by week. Retrieved from http://information-on-surrogacy.com /timeline-of-fetal-development

ETHICAL REFLEC TION: WHAT IS YOUR VIEW ON THE MORALIT Y OF ABORTION?

After reading all the arguments on rights and human life in this section, what do you believe about abortion? Address your views to the following points, and use an ethical framework (theory, approach, or principle) to justify your answers:

■ If most abortions during the first trimester are considered legally permissible, how should one view a woman taking an over-the-counter morning-after pill?

■ What are your ethical views on abortion? ■ When do you believe human life begins? ■ When do you believe a human life becomes a person?

Please describe these points by clarifying your own beliefs and values regarding these issues. Remember, there is no one right answer. These views are your opinions based on your values, an ethical theory justification, and readings in this text and other sources. A final ethical reflection:

■ If you are giving nursing care to a woman who just received a partial-birth abortion by way of an intact D&E, describe your own beliefs concerning partial-birth abortion.

Abortion 111

speak  out.  NARAL Pro-Choice America (2018) publicizes its belief that the choice of abortion should be women’s right based on the Roe v. Wade federal decision in 1973. The NRLC also publicizes its mission, which is the right to life. The following are the first few paragraphs from the mission statement of the NRLC:

The mission of National Right to Life is to protect and defend the most fundamental right of humankind, the right to life of every innocent human being from the beginning of life to natural death.

America’s first document as a new nation, The Declaration of In- dependence, states that we are all “created equal” and endowed by our Creator “with certain unalienable Rights, that among these are Life . . .” Our Founding Fathers emphasized the preeminence of the right to “Life” by citing it first among the

unalienable rights this nation was established to secure.

National Right to Life carries out its lifesaving mission by promoting respect for the worth and dignity of every individual human being, born or unborn, including unborn chil- dren from their beginning; those newly born; persons with disabilities; older people; and other vulnerable people, especially those who cannot defend themselves. Our areas of con- cern include abortion, infanticide, euthanasia, assisted suicide, and the killing of unborn children for their stem cells. (n.d., para. 3)

Many times, women who are pro-choice and believe in women’s reproductive rights re- ceive abortions but do not necessarily want the procedure. They may find themselves in situa- tions of unintended pregnancy where they must have an abortion for reasons already described in this section. Just because a woman believes

ETHICAL REFLEC TION: DISENFRANCHISED GRIEF—FORBIDDING THE GRIEF OF ABORTION

The Words of Tina If you regret an abortion, nobody wants to hear about it. After all, there’s nothing anyone can do to fix the problem. So you have to tell yourself what happened was good—and everyone around you tells you the same thing. After that, I knew I would never bring up the subject again.

The Words of Kathy Dear Mom, I’m sorry I never told you the truth about my abortion for so long. I told you I was having minor surgery—female problems. Remember? . . . And what really kills me the most is that you and Daddy came to see me that night in the hospital . . . I was so scared—scared you’d find out what really happened that day. Man, I was hurting inside. And there you two were standing at the foot of my bed extending your love and concern. Mom, didn’t you notice I couldn’t even look you in the eyes? And over the years the times I turned from you whenever the abortion issue was raised? I can still see your face the moment I finally told you. Eight years later . . . you never looked up at me . . . [and] you sat quietly and gently spoke to me. Just as long as I kept my shameful secret, you were willing to keep it too. . . . Oh how I wish you had been able to talk about it . . . to cry with me, to help me get through that horrible time. You knew it all . . . but we never talked. I was so desperately alone.

Reproduced from Burke, T. (2002). Forbidden grief: The unspoken pain of abortion. Springfield, IL: Acorn, pp. 55–56.

112 Chapter 4 Reproductive Issues and Nursing Ethics

in her right to choose in no way means her in- tentional decision to have an abortion and lose her fetus will not be emotionally traumatizing to her (Burke, 2002). Sometimes, women feel restricted from expressing their grief because they fear no one wants to hear about it. They may believe they cannot discuss the abortion or loss of their fetus with anyone because it needs to be kept a deep, dark secret. Some women may believe they do not have permission to grieve openly for the loss of their fetus, and therefore they experience extreme and extended sorrow, which is a type of grief called disenfranchised grief. When one is not allowed to grieve or must hide it, the grief process is prolonged and far worse. “Such ‘impacted’ [disenfranchised] grief can even become integrated into one’s personality and touch every aspect of one’s life” (Burke, 2002, p. 51).

▸ Reproductive Technology

On July 14, 1978, the first test-tube baby, Louise Joy Brown, was born in Great Britain (Louise Brown biography, 2014). The Browns had tried to conceive for 9 years. But Lesley Brown’s fallopian tubes were blocked, so they tried in vitro fertilization.

Reproductive failure can be emotionally and financially devastating to couples. Because of infertility, more than 1% of all infants born in the United States are conceived with assisted reproductive technology (Centers for Disease Control and Prevention [CDC], 2014). From 2006 to 2010 in the United States, 12% of all women of reproductive age or their partners used infertility services, such as assisted repro- ductive technology. As women’s ages increase, so too does their use of infertility services; in fact, 20% of women ages 35 to 44 have used infertility services. For sexually experienced males ages 25 to 44, approximately 9% re- ported they or their partners sought infertility services (CDC, 2017).

Infertility is generally defined as a woman not being able to become pregnant after the couple has tried for 1 year. The term assisted reproductive technology (ART) refers to the handling and management of sperm and eggs and every kind of fertility treatment or drug used for the purpose of retrieving eggs to be used in the treatment (CDC, 2017). Treatments not included under the ART umbrella consist of those in which only sperm are managed, such as artificial insemination, surgical proce- dures on women or men, or drugs involving infertility when eggs will not be retrieved.

The CDC recognizes five types of ART (CDC, 2018a):

1. In vitro fertilization (IVF): Extract- ing the woman’s eggs, fertilizing them with sperm outside the body, and then transferring the embryo through the cervix into the uterus

2. Intracytoplasmic sperm injection (ICSI): Injecting a single sperm into a mature egg, a method often used for couples with male infertility

3. Conventional fertilization: Placing the egg with many sperm outside the body into a petri dish until one sperm fertilizes the egg, which is another method used for couples with male infertility

4. Gamete intrafallopian transfer (GIFT): Transferring unfertilized eggs and sperm into the woman’s fallopian tubes and then transfer- ring the embryo into the uterus (rarely used in the United States)

5. Zygote intrafallopian transfer (ZIFT): Fertilizing eggs in the laboratory with sperm and then transferring the zygote into the fallopian tubes (rarely used in the United States)

Embryos resulting from IVF can be fro- zen until the time when the woman or couple will need one or more of them. The embryo is then unfrozen and implanted without signifi- cant risks to the fetus.

Reproductive Technology 113

The concerns over the future of human life and family structure, human cloning, the less than optimal success rate of ART, and the cost of reproductive technology give society enough reasons to ask a most basic ethical question: Should reproductive technology be used at all (Munson, 2004)? The cost of repro- ductive technology is a global concern because of scarce medical and healthcare resources. In a Center for American Progress report on future choices of ART, Arons (2007) stated that assisted reproductive technologies has prompted Americans to ask questions about society and family.

technology; (2) surrogacy (for donor eggs, em- bryo donation, or carrying fetuses); (3) the han- dling of surplus reproductive products, such as eggs or embryos that are not used; (4) the im- plications of sperm sorting or gender selection; and (5) genetic modification and enhancement (Frankel, 2003; Wachbroit & Wasserman, 2003).

The first group of ethical issues involves risks created as a result of technology. Exam- ples include ART and freezing embryos. One risk is multiple-infant live births. Worldwide, millions of babies have been born from IVF. The ethical principles include beneficence, nonmaleficence, and justice—promoting hu- man good for the woman or the couple who strongly desires a baby, doing no harm to the fetuses, and distribution and allocation of re- sources during the process and after the births.

The second group of ethical issues per- tains to third-party involvement through do- nor eggs and embryos and carrying fetuses through surrogacy. Surrogacy is a particularly good example, such as when a man can fertilize the woman’s egg but the woman cannot carry the fetus to term for some reason. In this case, the couple may ask a surrogate woman to carry the fetus to term, a process called gestational surrogacy. Other types of surrogacy include traditional surrogacy, in which the surro- gate uses her own eggs and is artificially insem- inated with semen from the prospective father and carries the fetus to birth; egg donation, in which a woman donates her eggs for IVF with specific semen; and embryo donation, when a couple with a history of past success- ful pregnancy and delivery donates embryos to prospective couples seeking parenthood by way of IVF and implantation.

The ethical issues regarding surrogacy are many. Who owns the infant after it is deliv- ered by the surrogate? Who is the mother—the woman who produced the egg or the one who carried the fetus to term and delivered it? Is the meaning of family integrity or biological rela- tionships at stake, or does it matter? Other con- cerns are legal issues: finding a legal way to pay the surrogate woman for her time and effort

ETHICAL REFLEC TION: WHAT ARE THE REPRODUC TIVE HEALTH RIGHTS IN THE UNITED STATES?

■ Reproductive health in the United States is currently a liberty right, one a couple may pursue without interference from any governmental agency, provided there are no laws against what is being pursued. Many reimbursement agencies do not pay for some of these expensive reproductive medical procedures.

■ How should private insurance companies and other reimbursement agencies weigh the priorities of healthcare resource allocation and distribution for those who are dying and critically ill against those who believe they have an autonomous right to a child?

■ What does the future hold for autonomy and rights to reproductive services?

■ How will distributive justice be managed?

Ethical Issues of Reproductive Technology There are specific ethical issues about repro- ductive technologies other than the broad ones already mentioned. These issues are divided into five groups: (1) the risks resulting from

114 Chapter 4 Reproductive Issues and Nursing Ethics

because the selling of children usually is ille- gal, avoiding treating babies as commodities, and avoiding exploitation of financially needy women (Munson, 2004; Wachbroit & Wasser- man, 2003). As the population increases, so will surrogacy. The principles involved are au- tonomy and nonmaleficence. These principles involve the issues of a couple’s feelings about the right to choose; the surrogate’s right to choose to be a surrogate; and doing no harm to the outcome of the child, the family biological structure, and individual freedoms.

The third group of ethical issues consists of surplus reproductive products result- ing from technology. For example, because the success rate is low for IVF, a woman may have stored many frozen eggs in an attempt for a successful pregnancy. After the woman is pregnant, what happens to the remaining eggs? Many of the eggs are fertilized, but only a few are implanted. What happens to these embryos? For people who believe life begins at conception, is it considered murderous to de- stroy the remainder of the fertilized eggs? Be- liefs about the right to life, the point at which life and full moral standing begin, and the ques- tion of whether destroying embryos is murder are at the center of this debate, as are the prin- ciples of autonomy and nonmaleficence.

The fourth group of ethical issues is called sperm sorting, or gender selection, which is advanced technology that enables persons to create the kind of child they want to have, to balance the family, or to prevent X-linked or other genetic diseases (Harris & Holm, 2003). The medical procedure through which sperm sorting is accomplished is called preimplan- tation genetic diagnosis (PGD). Family bal- ancing, or evening out gender representation in children, is a concept used to help justify and promote the use of gender selection prior to implantation. The principles to be consid- ered in sperm sorting, family balancing, and gender selection include autonomy, benefi- cence, nonmaleficence, and justice.

X-linked diseases occur in 1 of every 1,000 live births overall; more than 500 X-linked

diseases have now been identified, including hemophilia, Duchenne muscular dystrophy, and X-linked mental retardation. Other ge- netic diseases identified through PGD include Fanconi anemia, thalassemia, sickle-cell dis- ease, neurofibromatosis, and many others (University of Minnesota Masonic Cancer Center, n.d.). Sperm sorting dramatically in- creases a couple’s chance of having an unaf- fected child.

The last ethical issue, the fifth group, is inheritable genetic modification (IGM), which is a procedure used to modify genes along the germ lines that are transmitted to offspring (Frankel, 2003). Stem-cell research

ETHICAL REFLEC TION: MOLLY AND ADAM NASH

Adam Nash was born in Colorado on August 29, 2000. He had been an embryo that was sorted, screened, and selected from at least 12 embryos from the Nash couple, Lisa and Jack, for the purpose of tissue matching for their critically ill daughter, Molly.

Molly Nash was born to the Nash parents on July 4, 1994, with Fanconi anemia, a fatal autosomal recessive bone marrow failure (aplastic anemia), which is treatable only with a bone marrow transplant from a sibling’s umbilical cord blood. At the time, the success rate of a bone marrow transplant from an unrelated donor was only 42%, but from a sibling, the success rate increased to 85%.

The Nash parents, with support of physicians, made the decision to have preimplantation genetic testing on their embryos in the hopes of saving their only child. In the process, 12 of Lisa’s eggs were fertilized by Jack’s sperm via IVF; two of the embryos had Fanconi anemia and were discarded. Of the remaining 10 embryos, only 1 matched Molly’s tissue. This one became Adam Nash.

Data from Grady, D. (2000, October 4). Son conceived to provide blood cells for daughter. New York Times, p. 24.

Reproductive Technology 115

could help prevent genetic diseases from oc- curring in families through the generations by modifying the germ lines of the embryos. Genetic traits in the embryo can be enhanced with IGM. What if researchers could help a couple create the perfect baby? In 1932, Ald- ous Huxley suggested in his book Brave New World that genetics and reproductive tech- nology would be society’s worst nightmare because of the government’s involvement in these activities (Frankel, 2003).

a highly individualized marketplace fueled by an entrepreneurial spirit and the free choice of large numbers of parents that could lead us down a path, albeit incrementally, toward a society that abandons the lottery of evolution in favor of intentional ge- netic modification. The discoveries of genetics will not be imposed on us. Rather, they will be sold to us by the market as something we cannot live without. (p. 32)

When these genetic issues are mentioned, emotions flare between people with divided opinions. One side’s view is how great society’s future will be with the new developments. The other side’s view is science should not be inter- fering with nature or God’s work. Not only do these genetic issues spark extreme emotions; they are also the most complex of all the ethical issues people in society face today. The pros- pect of designing, altering, enhancing, or end- ing the life of fetuses or embryos is challenging.

The standard principles of autonomy, be- neficence, nonmaleficence, and justice should be addressed in the ethics involved with all PGD and other genetic manipulations such as IGM. However, the issues seem much more complex than just principle-driven or even theory-driven justifications. Genetic manip- ulation is essentially an unexplored territory leaving nurses and other healthcare profes- sionals in moral distress. Frankel’s (2003) state- ment with regard to IGM, which could be applied to all genetic manipulation, is the ques- tion of “whether we will shape it or be shaped by it” (p. 36).

▸ Issues of Other Reproductive Services

Prenatal care is critical to the future health of the child. There are numerous prenatal health issues, but only the critical ethical issues of

ETHICAL REFLEC TION: ARE COUPLES JUSTIFIED IN USING ONE PERSON FOR THE PURPOSE OF CREATING ANOTHER PERSON?

What are your thoughts? ■ Were the Nashs justified in creating Adam

for the purpose of helping Molly get well? In other words, should humans be used as a means to an end? Explore the rationale for using Kant’s deontology theory in the Nashs’ situation. Then, explore the rationale for using utilitarianism in the Nashs’ situation. Compare the two rationales.

■ Once the two Fanconi anemia embryos were discarded, 10 embryos were left. One of the 10 embryos became Adam, but what could have potentially happened to the 9 remaining embryos?

■ How was it justified to discard the two embryos with Fanconi anemia and keep the one that became Adam? Consider your beliefs regarding when life begins and the moral equality of each life.

What is the future of genetic modifica- tion? No one knows exactly, but Huxley’s 1932 prediction for the future of genetic technology is strikingly different from Frankel’s (2003) forecast:

But as we begin the twenty-first cen- tury, the greater danger, I believe, is

116 Chapter 4 Reproductive Issues and Nursing Ethics

genetic counseling and testing and maternal substance abuse are included in this section.

Genetic Screening and Testing Scientists have discovered thousands of ge- netic diseases, and the number increases every day. Genes causally linked to biochemical, cel- lular, and physiological defects are responsible for these genetic diseases (Munson, 2004). DNA testing can identify some of these dis- eases in the fetus, and many new technologies are available. For example, today Down syn- drome can be detected at 10 to 14 weeks’ gesta- tion by performing a chorionic villus sampling (CVS) of the products of conception or by an older method of amniocentesis, which cannot be performed until 16 to 18 weeks’ gestation. Diseases such as sickle cell, phenylketonuria (PKU), and Tay-Sachs can be screened with high accuracy. As an example, let us look at sickle-cell disease, an autosomal recessive dis- ease. If one parent has the disease and the other is not affected, all four children will be carriers. However, if both parents are carriers, there is a chance that one in four children will have the disease, which makes for a 25% chance overall.

Genetic screening involves professionals counseling individuals or couples about their risk for genetically linked diseases (Munson,

2004). Genetic screening can be useful for couples with a background of genetic disease, such as sickle-cell anemia, because of its in- heritance pattern. As Munson pointed out, however, after couples have this information, they often have no idea what to do with it. Should couples decide not to have children at all based on this 25% chance? Should couples take their chances and get pregnant anyway with the 25% risk? If so, should the woman be allowed to have a prenatal genetic test with only a 25% risk involved? If she discovers her fetus had a recessive disease, would she need to consider an abortion? If she would not con- sider having an abortion, what would be her next step? Last, should there perhaps have been no reason for the prenatal genetic test in the first place?

Couples need to consider these questions before wandering down the path of expensive prenatal testing. There is the possibility that a woman can have embryo selection, sometimes called sperm sorting, via IVF before implan- tation of the embryo. As previously discussed, however, embryo selection means the remain- ing embryos will be discarded, diseased or not, unless the couple donates them to other couples or for research purposes. Even when they are used for research, the embryos are de- stroyed after they are used.

ETHICAL REFLEC TION: FAMILY BALANCING

■ Do you believe that destroying a fetus or embryo is the same as killing? Explain your thoughts. ■ Ben and Lynn want to select the gender of their next baby. They currently have a girl, and this time

they want a boy to balance the family. Do you think the destruction of their remaining embryos would be for an inconsequential reason—family balancing? Explain your thoughts based on an ethical framework: theory, approach, or principle.

■ Do you think family balancing, sperm-sorting procedures, and the prevention of genetic diseases are reasons for consideration of moral standing when extra embryos will be destroyed? Explain your thoughts.

■ Explore your own feelings regarding sperm sorting involving PGD and genetic modification involving IGM. Write down your feelings about these two procedures.

■ What are ethical strategies nurses can use for caring for two couples using gender selection (sperm sorting), one seeking family balancing and one preventing an X-linked mental retardation? Be specific when listing these strategies.

Issues of Other Reproductive Services 117

A variety of prenatal tests allow for a close inspection of tissue and bone, including ultra- sound, radiography, and fiber optics. Prenatal genetic diagnosis is accomplished through an examination of the fetal DNA. Prenatal genetic diagnosis is commonly performed through amniocentesis at 15 weeks of preg- nancy or later, or by CVS, which is performed between 10 and 12 weeks of pregnancy (Amer- ican Academy of Family Physicians, 2017). The CVS test carries a risk for fetal foot or toe deformities; with amniocentesis, a risk of mis- carriage exists. The most common test used for prenatal genetic diagnosis is a blood test for alpha fetoprotein. It is performed several weeks after conception and predicts disorders such as spina bifida or anencephaly with high accuracy.

Knowing when and when not to test could pose an ethical conflict for healthcare profes- sionals. Many women want to know prior to delivery that everything is all right, and often they believe genetic testing will provide a cer- tain degree of personal control and comfort. Should women have prenatal tests performed for what would seem like trivial reasons to other people? Will the woman’s insurance company pay for these tests? What if she has no insurance but still wants them? Does she have an autonomous right to testing just be- cause the technology is available?

Many experts hold two basic views: pre- natal testing should be done (1) if the woman strongly believes in her right to have the pro- cedure and wants it performed and (2) when the cost of the prenatal testing is very small compared to the costs of raising a child with a genetic disease or debilitating disorder (Mun- son, 2004). These decisions reach to the very core of family values and biological structure.

Stem-cell research offers considerable hope for correction of genetic diseases, but un- til the time comes for its full use, couples must make their decisions based on the technology available to them. Testing is appropriate when a couple can depend on accurate information, make an informed choice and decision, and

live with the outcome after the decision about prenatal testing is made.

Maternal Substance Abuse Maternal substance abuse is detrimental to a fetus or newborn. However, according to research, some pregnant women who abuse drugs do not seem to understand the poten- tial harm they are inflicting on their unborn children (Perry, Jones, Tuten, & Svikas, 2003). As one would expect, the women who are un- aware of the danger they are posing to their unborn children are those who are abusing drugs but do not seek help. This same group of women was found to be more likely to be- lieve having a small baby is a positive occur- rence. The results of this research underscore the need for wide-scale community education programs about maternal drug abuse. Nurses can be a valuable resource in this effort.

Maternal drug screening is not performed routinely, and testing a woman or an infant without informed consent is considered a vi- olation of a patient’s right to privacy (Keenan, 2006). If healthcare providers perform mater- nal or newborn testing without the mother’s consent and the test results are positive, any decision to restrict or remove parental rights would be based on illegally obtained evidence.

The handling and treatment of maternal drug abuse varies from state to state, but it is important to remember violations of women’s rights (liberty rights) have occurred in some states. Possible violations may include the following:

■ Prosecution of a pregnant woman who abuses drugs

■ Charging a pregnant woman with drug possession if she is arrested for drug abuse prior to fetal viability

■ Charging a pregnant woman with dis- tribution of drugs to a minor if she is arrested for drug abuse after the fetus is considered viable

■ Reduction of parental rights

118 Chapter 4 Reproductive Issues and Nursing Ethics

Nurses have an ethical responsibility to recognize maternal substance abuse. Although nurses might personally find a pregnant wom- an’s substance abuse morally objectionable, compassion is warranted. A family, rather than an individual person, is wounded by the wom- an’s abusive behavior. Action is sometimes taken based on state laws to protect a fetus or child who is at risk from maternal substance abuse, but nurses must consider that a wom- an’s decision or desire to seek treatment might result in a violation of the woman’s rights. A woman’s decision to obtain help often involves limited trust toward healthcare providers.

▸ Nursing Care of Childbearing Women

Ethical and legal issues in reproductive health are incredibly complex and challenging, but at the same time they encourage us with the

promise of correcting genetic diseases. Some- times, the possibilities inherent in new genetic technologies, including human cloning, cause people to become apprehensive or fearful. First, nurses caring for childbearing women must be educated and remain current with reproductive ethics. Nurses need to under- stand and respect the beliefs and practices about pregnancy and childbearing of various cultures.

ETHICAL REFLEC TION: PREGNANC Y AND PRENATALLY DIAGNOSED GENETIC DISEASES

■ Do you think a couple has a right to have a child with a prenatally diagnosed disabling genetic disease? Explain your thoughts.

■ Do you think physicians and nurses should inform couples who want a baby about all the genetic tests available to them? Why or why not? Explain your thoughts.

■ Do you think a mother has a right to know the results of her prenatal genetic tests, whether positive or negative? Explore both sides based on the literature, and justify your answer based on an ethical framework: theory, approach, or principle.

■ What approaches would you take as a nurse caring for a pregnant mother carrying a fetus with Down syndrome? Consider all the options.

ETHICAL REFLEC TION: PREGNANC Y AND DRUG ABUSE

■ If you were a maternal–child nurse, after considering the ACLU’s 1997 statement regarding women’s rights, what action would you take if you suspect a pregnant patient at the clinic where you work is abusing drugs? What information would you need to guide your actions?

■ What would you do if you suspect the woman will avoid the clinic in the future if you address the abuse issue?

Certain aspects of Provisions 1.4, 2.2, and 5.3 in the Code of Ethics for Nurses with Inter- pretive Statements (2015) particularly relate to the care of childbearing women. Those aspects are presented in the following summary:

1. Nurses must maintain respect for human dignity and autonomy.

2. Nurses must recognize and protect patients’ rights for understanding information and potential implica- tions with their decisions.

3. Nurses must acknowledge the struggles between their own per- sonal values and professional val- ues regarding their responsibility for respecting the interests of pa- tient care and patients’ decisions.

4. When asked, nurses may express a personal and informed opinion but also must observe the moral and

Nursing Care of Childbearing Women 119

professional boundaries regarding patient self-determination.

5. Nurses may potentially influence their patients during health care, whether intended or unintended. Therefore, they must avoid any be- havior that may be manipulative or coercive.

Nursing management for childbearing women is focused on the ethical relationship between the nurse and the woman. Related to the Code of Ethics for Nurses (ANA, 2015) is a relational care approach. With this framework, the nurse will always ask, “What is the ‘right thing to do’ for oneself and others?” (Bergum, 2004, p. 485). The nurse–patient relationship, as Bergum has experienced it, is a moral entity. Relational ethics is an action ethic created within the moral space of a relationship (Bergum, 2004; Jopling, 2000). A moral space is where the relationship is created and nurses display responsibility and respond to others. Nurses must be morally responsible to the childbearing women for whom they care, whether they are caring for them clinically, educating them, or overseeing their care. In so doing, nurses need to remember the dual-care framework for preg- nant women: woman and fetus.

Bergum (2004) identified four themes to define relational ethics: environment, embod- iment, mutual respect, and engagement. No matter which ethical issue is of concern, nurses need to focus on the quality of the moral re- lationship between the nurse and patient. In relational ethics, the first theme, environment, is a living system. It is important to understand how the whole environment is affected by the actions of each person. The living environ- ment is in every nurse, and every action taken by nurses affects the outcome of the health- care system as a whole. For example, the goal of a healthcare agency for a woman who had a partial-birth abortion could be to discharge her after 1 day. The patient and agency depend on the responsible and competent actions of nurses and others to meet the goal of a 1-day discharge.

Embodiment is the second theme, which is defined as having scientific knowledge, compassion for human life, and experiencing feeling and emotion for another person. For example, if a pregnant woman at 16 weeks’ gestation has just been told after a prenatal ge- netic test that her fetus has Down syndrome, the nurse would understand the science be- hind the test and know the aftercare proce- dure. The nurse would have a mindful reality of the woman’s pain and suffering and there- fore have compassion for her.

Mutual respect is the third theme in rela- tional ethics. Mutual respect is a way for peo- ple to exist together and have equal worth and dignity; it often is difficult to attain, but it is the central theme of relational ethics. In the ex- ample of the woman and her fetus with Down syndrome, mutual respect could be initiated by the nurse’s regard for the woman’s feelings, values, beliefs, and attitudes. The word mutual means to have a reciprocal and interactive fo- cus. Based on this concept, the woman would need to reciprocate respect toward the nurse.

The fourth theme, relational engagement, is when the nurse and patient can find a few minutes to interact about something import- ant to them. The nurse needs to understand the patient’s circumstances and vulnerability. An example of engagement for the woman and her fetus with Down syndrome can be ac- complished by the nurse’s engaging in a con- versation with the woman about her feelings concerning the diagnosis and options for her and her fetus.

Dialogue is in the center of the moral space, at the focus of relational ethics, and is the venue for the four themes to emerge. Depersonalization and coldness often sur- round the healthcare systems that women use. Nurses must give personalization to childbear- ing women by practicing relational ethics. On relational ethics and the moral life, Bergum (2004) stated:

With relational space as the location of enacting morality, we need to con- sider ethics in every situation, every

120 Chapter 4 Reproductive Issues and Nursing Ethics

encounter, and with every patient. If all relationships are the focus of un- derstanding and examining moral life, then it is important to attend to the quality of relationships in all

nursing practices, whether with pa- tients and their families, with other nurses, with other health care profes- sionals, or with administrators and politicians. (p. 485)

KEY POINTS

■ Reproductive health rights imply that people have the capability to reproduce and the freedom to decide if and when to reproduce. The definition includes the right of men and women to be informed and have access to safe, effective, affordable, and acceptable methods of reproductive health and family planning of their choice.

■ A turning point for improving worldwide and U.S. maternal health was in 2010 after the release of an alarming report that reflected perilous statistics for women giving birth. The U.S. maternal death rate is higher than in 49 other countries, and in those statistics, the United States was the only developed country with a rising maternal mortality rate.

■ There are different variations of how organizations and people view the moral standing of a fetus. Generally, the degree to which moral standing is placed on the fetus influences maternal rights— the greater the degree of moral standing of the fetus, the more restraint of maternal rights. The central ethical dilemma regarding abortion is about rights—the right to life of the fetus or the woman’s right to control her own body. The U.S. Supreme Court justices upheld the Partial-Birth Abortion Ban Act of 2003, also known as the Federal Abortion Ban, on April 18, 2007 (ACLU, 2007).

■ Most women who have abortions agree they could not have a baby, carry a fetus, or raise a family for personal or health reasons. Some women, though they may strongly believe in maternal rights, experience disenfranchised grief because they believe they do not have permission to grieve the loss of their fetus; thus, they experience extreme sorrow.

■ ART has been a miracle and a relief for women or couples who experience infertility. There are five types of ART: in vitro fertilization (IVF), intracytoplasmic fertilization, conventional fertilization, zygote intrafallopian transfer (ZIFT ), and gamete intrafallopian transfer (GIFT ). Ethical issues regarding ART include the risks resulting from technology; surrogacy (donor eggs, embryo donation, or carrying fetuses); the handling of surplus embryos and fetuses; implications of sperm sorting, gender selection, and family balancing; and genetic modification and enhancement—the dream of creating a perfect child.

■ Preimplantation genetic diagnosis (PGD) is a procedure that allows implantation of a selected gender or a perfect or near-perfect embryo. Many genetic diseases can be detected through gene technology, screening, and genetic diagnosis. Knowing when to test and when not to test could be an ethical difficulty for all people concerned with the issue. Maternal rights should be respected, but weighing maternal rights against burdens of costs may be a hard choice for couples and providers of care.

■ Maternal substance abuse, including alcohol and other drugs, can be detrimental to the fetus or newborn infant. There tends to be lack of education from providers of care or a deficit of pregnant women in comprehending the adverse effects of substance abuse. Maternal and infant drug screening is not performed on a routine basis and may not be done without express informed consent. Nurses have a moral responsibility to educate their patients and recognize maternal substance abuse. However, a woman’s decision to obtain help is her decision, and her decision is dependent on the degree of trust she has developed with her providers of care.

■ Nurses should incorporate essential concepts from the ANA Code of Ethics for Nurses with Interpretive Statements (2015) with Bergum’s (2004) relational ethics. Bergum’s themes of relational ethics are environment, embodiment, mutual respect, and engagement. Dialogue is in the center of the moral space and serves as the venue in which Bergum’s four themes can emerge.

Nursing Care of Childbearing Women 121

References American Academy of Family Physicians. (2017).

Prenatal diagnosis: Amniocentesis and CVS. Re trieved from https://familydoctor.org/prenatal-diagnosis -amniocentesis-and-cvs/

American Civil Liberties Union (ACLU). (1997). Coercive and punitive governmental responses to women’s con- duct during pregnancy. Retrieved from https://www .aclu.org/other/coercive-and-punitive-governmental -responses-womens-conduct-during-pregnancy

American Civil Liberties Union (ACLU). (2007). Case summaries: U.S. Supreme Court upholds federal ban on abortion methods: Ruling undermines women’s health and equality. Retrieved from https://www.aclu.org /other/case-summaries-us-supreme-court-upholds -federal-ban-abortion-methods

American Civil Liberties Union (ACLU). (2014). ACLU-TN seeks to challenge new law criminalizing ad- dicted mothers. Retrieved from https://www.aclu.org /news/aclu-tn-seeks-challenge-new-law-criminalizing -addicted-mothers

American Nurses Association (ANA). (2015). Code of eth- ics for nurses with interpretive statements. Washington, DC: Author.

Amnesty International. (2010). Deadly delivery: The ma- ternal health care crisis in the USA [PDF file]. Re- trieved from https://www.amnestyusa.org/files/pdfs/ deadlydelivery.pdf

Amnesty International. (2011). Deadly delivery: The maternal health care crisis in the USA: One year update spring 2011 [PDF file]. Retrieved from https://www.amnestyusa .org/wp-content/uploads/2017/04/deadlydeliveryone year.pdf

Arons, J. (2007). Future choices: Assisted reproductive technologies and the law [PDF file]. Retrieved from https://cdn.americanprogress.org/wp-content/uploads /issues/2007/12/pdf/arons_art.pdf

Bergum, V. (2004). Relational ethics in nursing. In J. L. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and prac- tice (pp. 485–502). Toronto, Canada: Pearson.

Burke, T. (2002). Forbidden grief: The unspoken pain of abortion. Springfield, IL: Acorn.

Centers for Disease Control and Prevention (CDC). (2014). National public health action plan for the detection, prevention, and management of infertility [PDF file]. Re- trieved from https://www.cdc.gov/reproductivehealth /infertility/pdf/drh_nap_final_508.pdf

Centers for Disease Control and Prevention (CDC). (2017). What is assisted reproductive technology? Re- trieved from https://www.cdc.gov/art/whatis.html

Centers for Disease Control and Prevention (CDC). (2018a). Infertility FAQs. Retrieved from https://www .cdc.gov/reproductivehealth/infertility/index.htm

Centers for Disease Control and Prevention. (2018b). Strategic plan: Improving women’s reproductive health, pregnancy health, and infant health. Retrieved from https://www.cdc.gov/reproductivehealth/drh /strategicplan.htm

Chandis, V., & Williams, T. (2006). The patient, the doc- tor, the fetus, and the court-compelled cesarean: Why courts should address the question through a bioethi- cal lens. Medicine and Law, 25, 729–746.

Coutts, M. C. (1990). Maternal-fetal conflict: Legal and ethical issues [PDF file]. Retrieved from https:// repository.library.georgetown.edu/bitstream/handle /10822/556868/sn14.pdf ?sequence=1

DeGrazia, D. (2005). Human identity and bioethics. New York, NY: Cambridge University Press.

DeGrazia, D. (2006). Moral status, human identity, and early embryos: A critique of the president’s approach. Journal of Law, Medicine, & Ethics, 34(1), 49–57.

DeGrazia, D. (2008). Moral status as a matter of degree? The Southern Journal of Philosophy, 46, 181–198.

Farmer, B. (2016, March 23). Tennessee lawmakers discon- tinue controversial fetal assault law. Retrieved from https://www.npr.org/2016/03/23/471622159/tennessee -lawmakers-discontinue-controversial-fetal-assault-law

Feinberg, J. (1984). Potentiality, development, and right. In J. Feinberg (Ed.), The problem of abortion (2nd ed., pp. 145–150). Belmont, CA: Wadsworth.

Frankel, M. S. (2003). Inheritable genetic modification and a brave new world: Did Huxley have it wrong? Hastings Center Report, 33(2), 31–36.

Grady, D. (2000, October 4). Son conceived to provide blood cells for daughter. New York Times, p. 24. Retrieved from https://www.nytimes.com/2000/10/04/us/son -conceived-to-provide-blood-cells-for-daughter.html

Guttmacher Institute. (2018a). Number of abortions: Abortion counters. Retrieved from http://www .numberofabortions.com

Guttmacher Institute. (2018b). An overview of abortion laws. Retrieved from https://www.guttmacher.org /state-policy/explore/overview-abortion-laws

Harris, J., & Holm, S. (2000). Introduction. In J. Harris & S. Holm (Eds.), The future of human reproduction: Ethics, choice, & regulation (pp. 1–37). Oxford, UK: Clarendon.

Harris, J., & Holm, S. (2003). Abortion. In H. LaFollette (Ed.), The Oxford handbook of practical ethics (pp. 112–135). Oxford, UK: Oxford University Press.

Information on Surrogacy. (n.d.). Timeline of fetal develop- ment – Week by week. Retrieved from http://information -on-surrogacy.com/timeline-of-fetal-development

Iris, O., Amalia, L., Moshe, M., Arnon, W., & Eyal, S. (2009). Refusal of treatment in obstetrics—a maternal- fetal conflict. Journal of Maternal-Fetal and Neonatal Medicine, 2(7), 612–615.

122 Chapter 4 Reproductive Issues and Nursing Ethics

Jopling, D. A. (2000). Self-knowledge and the self. New York, NY: Routledge.

Keenan, C. (2006). Maternal versus fetal rights: Part I. In S. W. Killion & K. Dempski (Eds.), Quick look nursing: Legal and ethical issues (pp. 144–145). Sudbury, MA: Jones and Bartlett Publishers.

Kemp, J. (2014, July). Tennessee mom arrested under new drug law after newborn tests positive for meth. Re- trieved from http://www.nydailynews.com/news /crime/tennessee-mom-busted-new-drug-law-baby -tests-positive-meth-article-1.1865979

Louise Brown biography. (2014). Retrieved from https:// www.biography.com/people/louise-brown-9542072

Ludwig, M. J. (2008). Maternal-fetal conflict. Retrieved from http://depts.washington.edu/bioethx/topics /matern.html

Mahoney, J. (2007). The challenge of human rights: Origin, development, and significance. Oxford, UK: Blackwell.

Marquis, D. (1989). Why abortion is immoral. Journal of Philosophy, 86, 183–202.

MedicineNet.com. (2016). Medical definition of induced abortion. Retrieved from https://www.medicinenet .com/script/main/art.asp?articlekey=17775

Munson, R. (2004). Intervention and reflection: Ba- sic issues in medical ethics (7th ed.). Belmont, CA: Wadsworth-Thomson.

NARAL: Pro-Choice America. (2018). Abortion access. Retrieved from https://www.prochoiceamerica.org /issue/abortion-access/

National Abortion Federation. (2010). History of abortion. Retrieved from https://prochoice.org /education-and-advocacy/about-abortion/history-of -abortion/

National Right to Life Committee (NRLC). (n.d.). Na- tional right to life mission statement. Retrieved from https://www.nrlc.org/about/mission/

Options for Sexual Health Organization. (2016, July). Emergency contraception. [PDF file]. Retrieved from https://www.optionsforsexualhealth.org/sites /optionsforsexualhealth.org/files/ec_fact_sheet.pdf

Perry, B. L., Jones, H., Tuten, M., & Svikas, D. S. (2003). Assessing maternal perceptions of harmful effects of drug use during pregnancy. Journal of Addictive Dis- eases, 22, 1–9.

Planned Parenthood. (2018). Emergency contraception. Re- trieved from https://www.plannedparenthoodaction .org/issues/birth-control/emergency-contraception

Post, L. F. (1996). Bioethical considerations of maternal-fetal issues. Fordham Urban Law Journal, 24(4), 757–775.

Steinbock, B. (1992). Life before birth: The moral and legal status of embryos and fetuses. New York, NY: Oxford University Press.

Steinbock, B. (2006). The morality of killing human embryos. Journal of Law, Medicine, & Ethics, 34(1), 26–34.

Tennessee Fetal Assault Law, SB1391, 108th General As- sembly. (2013). Retrieved from https://legiscan.com /TN/bill/SB1391/2013

Tennessee Fetal Assault Law, SB1391. (2017). Status: No longer in effect. Retrieved from https://rewire .news/legislative-tracker/law/tennessee-pregnancy -criminalization-law-sb-1391/

Thomson, J. J. (1971). A defense of abortion. Philosophy and Public Affairs, 1(1), 47–66.

Tran, L. (2004). Legal rights and the maternal-fetal con- flict. BioTeach Journal, 2, 76–80.

United Nations Population Fund. (2014a). ICPD beyond 2014 issue brief: Health: Sexual and reproductive health and rights (SRHR) [PDF file]. Retrieved from https:// w w w.unfpa.org/sites/default/f iles/res ource-p df /Sexual_and_Reproductive_Health_Rights.pdf

United Nations Population Fund. (2014b). Reproduc- tive rights and reproductive health. Program of Ac- tion: International Conference on Population and Development (pp. 58–77) [PDF file]. Retrieved from https://www.unfpa.org/sites/default/files/pub-pdf /programme_of_action_Web%20ENGLISH.pdf

University of Minnesota Masonic Cancer Center. (n.d.). Umbilical cord blood transplantation. Retrieved from https://www.cancer.umn.edu/our-research/research -programs/transplant-biology-and-therapy-program /umbilical-cord-blood-transplantation

Veatch, R. (2003). The basics of bioethics (2nd ed.). Upper Saddle River, NJ: Prentice Hall.

Wachbroit, R., & Wasserman, D. (2003). Reproductive technology. In H. LaFollette (Ed.), The Oxford hand- book of practical ethics (pp. 136–160). Oxford, UK: Oxford University Press.

World Health Organization (WHO). (2018a). Mater- nal mortality. Retrieved from http://www.who.int /news-room/fact-sheets/detail/maternal-mortality

World Health Organization (WHO). (2018b). Prevent- ing unsafe abortion. Retrieved from http://www.who .int/en/news-room/fact-sheets/detail/preventing -unsafe-abortion

123References

Infant and Child Nursing Ethics Karen L. Rich

Heaven lies about us in our infancy.

—William Wordsworth, “Intimations of Immortality,” 1807

▸ Mothering In his book Ethics for the New Millennium, the Dalai Lama (1999) emphasized the importance of the ethic of compassion. Empathy, which is one’s “ability to enter into and, to some extent, share others’ suffering” (p. 123), represents compassion (nying je) at a basic level. The Dalai Lama stated compassion can be devel- oped, going beyond empathy to the extent that it arises without effort and “is unconditional,

undifferentiated, and universal in scope” (p.  123). Compassion is a desire to separate another being from suffering. Compassion is also a sense of intimacy toward all feeling and perceiving beings (Dalai Lama, 1999). Persons with this well-developed level of compassion include in the scope of their compassion even those beings who may harm them. According to the Dalai Lama, this profound form of inti- macy and compassion can be likened “to the love a mother has for her only child” (p. 123).

OBJECTIVES

After reading this chapter, the reader should be able to do the following:

1. Discuss issues of vulnerability as they relate to the care of infants and children. 2. Understand ethical issues regarding the universal vaccination of children and the nurse’s role. 3. Identify justifiable, ethical decision-making processes in the care of children. 4. Evaluate factors regarding refusing treatment for infants and children. 5. Discuss landmark cases in the ethical and legal care of infants and children. 6. Understand the nurse’s role as an advocate in the care of infants and children.

125

CHAPTER 5

© Gajus/iStock/Getty Images

All animals are born into an initial con- dition of vulnerability and dependence. Hu- man infants and children “arrive in the world in a condition of needy helplessness more or less unparalleled in any other animal spe- cies” (Nussbaum, 2001, p. 181). Historically, Western ethics generally has ignored human vulnerability and its resultant consequence of creating a need for humans to depend on one another (MacIntyre, 1999). However, some feminist philosophers, such as Virginia Held (1993) and Sara Ruddick (1995), used the underlying premise of human dependence as the foundation for their philosophy of ethics. In fact, some feminist philosophers proposed that the caring that occurs between a mother and her vulnerable and dependent child can be used as a model for all moral relationships. This model is similar to the model of compas- sion discussed by the Dalai Lama.

In considering how a feminist approach to ethics is relevant to the care of infants and chil- dren, nurses can think in terms of what Tong (1997) called a care-focused feminist ethics approach; this type of approach to ethics sup- ports feminine values, such as “compassion, empathy, sympathy, nurturance, and kindness” (p. 38), which often have been marginalized in male-dominated societies. These values and virtues are ones traditionally associated with good mothering.

There have been heated debates about the differences between the types of moral reason- ing engaged in by males and females. However, Stimpson noted “crucially, both women and men can be feminists” (Stimpson, 1993, p. viii). In accepting and using the feminine model of social relationships existing between mothers and children, Stimpson stated “a moral agent, female or male, will be [what Held (1993) called] a ‘mothering person’ ” (p. viii).

Held (1993) proposed the concept of mothering person as a gender-neutral term used to describe the type of mothering that would occur in a society without male dom- ination. Held stated there are good reasons to believe mothering should be a practice

performed by both women and men. Ruddick (1995) defined a mother as one who is capable of doing maternal work and

a person who takes on responsibility for children’s lives and for whom pro- viding child care is a significant part of her or his working life.  .  . . I am suggesting that, whatever difference might exist between female and male mothers, there is no reason to believe that one sex rather than the other is more capable of doing maternal work. (pp. 40–41)

When providing ethical care to infants and children, nurses support mothers and mothering persons, both females and males, who share in the unconditional compassion toward their children as described by the Dalai Lama.

FOCUS FOR DEBATE

Engage in a debate with your colleagues using the following positions: (1) mothering is an inherently female trait versus (2) mothering is not an inherently female trait.

▸ Foundations of Trust A boy bathing in a river was in danger of being drowned. He called out to a passing traveler for help, but instead of holding out a helping hand, the man stood by unconcernedly and scolded the boy for his imprudence. “Oh sir!” cried the youth, “pray help me now and scold me afterwards.”

—Aesop, Aesop’s Fables

“Children are vulnerable, often fright- ened small people” (Ruddick, 1995, p. 119). An infant’s development of basic trust ver- sus basic mistrust is the first of Erik Erik- son’s (1950/1985) eight stages of psychosocial

126 Chapter 5 Infant and Child Nursing Ethics

development. According to Ruddick, it is the responsibility of mothers to establish the feel- ing of trust between themselves and their chil- dren because children’s trust ideally is founded on the nurturance and protectiveness of their mothers. Unless there are unusual circum- stances, parents are entrusted with the au- tonomy to make decisions for their minor children. This autonomy is an endorsement of the trust societies place in parents’ ability and desire to provide care in the best interest of their children. Although parents generally have autonomy privileges in decision making for their children, children have their own ba- sic dignity as human beings.

▸ Universal Vaccination Because of the grave threat of nonprevent- able infectious diseases, people living before and during the early 1900s would have been delighted to have had a wide array of avail- able vaccines. However, because of successful public health advances in the 20th and 21st centuries, many people in the United States have not personally encountered some of the diseases that are now preventable by vaccines. Therefore, some people take for granted the benefits of available vaccines. According to the Centers for Disease Control and Preven- tion (CDC, 2016b),

Immunizations have had an enor- mous impact on improving the health of children in the United States. Most parents today have never seen first-hand the devastating con- sequences that vaccine-preventable diseases have on a child, a family, or community. While these diseases are not common in the U.S., they persist around the world. It is important that we continue to protect our children with vaccines because outbreaks of vaccine-preventable diseases like pertussis, mumps, and measles can and do occur in this country. (para. 1)

States vary in regard to mandatory child- hood vaccination laws, and the CDC (2017c) has a Public Health Law program that com- piles data about school vaccination laws in each state (see FIGURE 5-1). Most of the state laws cover both public and private schools and day-care centers (CDC, 2017d). The following list includes nine characteristics of school vac- cination exemptions covered by laws:

1. Permitting medical or religious ex- emptions only

2. Excluding philosophical exemptions 3. Allowing exempted students to

be excluded from school during outbreaks

ETHICAL REFLEC TION

With your colleagues, use the Socratic method to analyze the concept of nurse–family trust.

Because most children depend on their mothering persons to be trustworthy, moth- ering persons often are wary when they are judging healthcare policies and choosing the people they entrust to meet their children’s healthcare needs. Trust becomes an even greater issue when mothering people are not able to choose their children’s healthcare pro- viders, as is usually the case with nurses. Jus- tified maternal wariness includes a cautious trust of nurses and other healthcare profes- sionals who interact with and treat one’s chil- dren. However, it is natural, and often a source of comfort, for parents to believe that health- care professionals have a more complete grasp of the medical facts and probabilities related to their child’s health care than they themselves have in many instances. Consequently, parents depend on and trust healthcare professionals to support or guide them in making difficult healthcare decisions for their children. Some- times, this trust is similar to unavoidable trust (see Chapter 2).

Universal Vaccination 127

MIDWEST W

E S

T

N O

R T

H E

A S

T

SOUT HEAS

T

SO UTHW

EST

MO ND NE

OH SD

WI

CT

DC

DE

MA

MD

ME

NH

NJ

NY

PA

RI

VT

AL

AR

FL

GA KY

LA MSNCSCTN

VA WV

AZ

NM

OK

TX

AK

CA

CO

HI

ID

MT

NV

OR

UT

WA

WY

IA

IL

IN KS

MI MN

Medical or religious exemptions only

Philosophical exemptions expressly excluded

Exempted student exclusion during outbreak

Parental acknowledgment of student exclusion during outbreak in exemption application

Exemptions not recognized during outbreak

Parental notarization or affidavit required for exemptions

Enhanced education for exemptions

Medical exemptions expressly temporary or permanent

Annual healthcare provider recerti�cation for medical exemptions

FIGURE 5-1 Polar graph of state school vaccination exemptions law. Reproduced from Centers for Disease Control and Prevention (CDC). (2017c). Public health law program. Retrieved from https://www.cdc.gov/phlp/publications/topic/vaccinations.html

128 Chapter 5 Infant and Child Nursing Ethics

4. Requiring parental acknowledg- ment during the exemption applica- tion process that exempted students can be excluded from school during outbreaks

5. Establishing that exemptions might not be recognized in the event of an outbreak

6. Requiring parental affidavit or no- tarization in the exemption appli- cation process

7. Requiring enhanced education on vaccinations in the exemption ap- plication process

8. Distinguishing between temporary and permanent medical exemp- tions in the exemption application process

9. Requiring annual or more frequent physician recertification for medi- cal exemptions

When exemptions are obtained, children can attend school without immunizations in most states, although parents or guard- ians may be judged liable in a civil case if be- cause of their child’s lack of immunization, a vaccine-preventable communicable disease is transmitted to another person. Also, if par- ents follow the CDC’s (2012) recommended guidelines to protect unvaccinated children, these unprotected children may miss months of school because the CDC recommends that unvaccinated children remain at home during vaccine-preventable disease outbreaks, which may occur in waves spanning a number of weeks.

Some parents who are opposed to a pro- gram of universal vaccination seek ways to achieve natural immunity for their children. A method that has sometimes been used is to have children attend “exposure parties.” Groups of well and previously uninfected children are brought together with a child or children who are currently believed to be infectious with a specific vaccine-preventable disease, such as chicken pox, rubella, or measles, so that the

uninfected children can become infected and thus naturally immunized. These parties are not without risks to children, including the most obvious result of having one’s child en- dure sometimes dangerous and unnecessary illnesses. On its website about chickenpox transmission, the CDC (2016a) has a profile box covering exposure parties. The title of the box is “ ‘Chickenpox Parties’—Don’t Take the Chance.”

The CDC published an article about nurses’ roles in childhood vaccinations. This article contains survey information and con- stitutes an effort to distribute the information through having the article published in pro- fessional literature (see Research Note: Nurses Essential in Easing Parental Concerns About Vaccination). The CDC also has a webpage titled “Provider Resources for Vaccine Con- versations with Parents” (2017b), which can be accessed and used to help nurses in discussing vaccines with parents.

ETHICAL REFLEC TION

Research some of the reasons parents refuse immunizations for their children. Imagine you are a public health nurse working at a county health department. A mother brings her newborn in for a well-baby checkup. The baby’s mother tells you she has a philosophical objection to childhood vaccinations. How would you respond to the mother’s comment?

▸ Children of Immigrant Families

As this fifth edition book is being prepared for publication, the most recent U.S. census data was collected in 2010. The 2010 census re- vealed that children of immigrants represent one in four people younger than age 18 years

Children of Immigrant Families 129

RESEARCH NOTE: NURSES ESSENTIAL IN EASING PARENTAL CONCERNS ABOUT VACCINATION

Parents consider health care professionals one of the most trusted sources in answering questions and addressing concerns about their child’s health. A recent survey on parents’ attitudes, knowledge, and behaviors regarding vaccines for young children—including vaccine safety and trust—found that 82% of parents cited their child’s health care professional as one of their top 3 trusted sources of vaccine information. With so many parents relying on the advice of health care professionals about vaccines, a nurse’s recommendation plays a key role in guiding parents’ vaccination decisions.

“A nurse’s expertise, knowledge, and advice are vital in creating a safe and trusted environment for discussing childhood immunizations,” said Dr. Nancy Messonnier, CDC’s Director of the National Center for Immunization and Respiratory Diseases. “How you communicate with parents during routine pediatric visits is critical for fostering parental confidence in the decision to vaccinate their children.”

The survey also found that 71 percent of parents were confident or very confident in the safety of routine childhood immunizations, although parents’ most common question is what side effects they should look for after vaccination. Twenty-five percent are concerned that children get too many vaccines in one doctor’s visit and 16 percent of survey participants are concerned that vaccines may cause autism.

“Reinforcing vaccine safety messages can go a long way towards assuring parents that they are doing the best thing for their children,” says Patsy Stinchfield, a Pediatric Nurse Practitioner who represents the National Association of Pediatric Nurse Practitioners. “One of the best ways you can establish trust with parents is by asking open-ended questions to help identify and address concerns they may have about vaccines. Also, restate their questions and acknowledge concerns with empathy.”

Make sure to address questions or concerns by tailoring responses to the level of detail the parent is looking for. Some parents may be prepared for a fairly high level of detail about vaccines—how they work and the diseases they prevent—while others may be overwhelmed by too much science and may respond better to a personal example of a patient you’ve seen with a vaccine-preventable disease. A strong recommendation from you as a nurse can also make parents feel comfortable with their decision to vaccinate.

For all parents, it’s important to address the risks of the diseases that vaccines prevent. It’s also imperative to acknowledge the risks associated with vaccines. Parents are seeking balanced information. Never state that vaccines are risk-free and always discuss the known side effects caused by vaccines.

If a parent chooses not to vaccinate, keep the lines of communication open and revisit their decision at a future visit. Make sure parents are aware of the risks and responsibilities they need to take on, such as informing schools and child care facilities that their child is not immunized, and being careful to stay aware of any disease outbreaks that occur in their communities. If you build a trusting relationship over time with parents, they may reconsider their vaccination decision.

To help communicate about vaccine-preventable diseases, vaccines, and vaccine safety, the Centers for Disease Control and Prevention (CDC), the American Academy of Family Physicians (AAFP), and the American Academy of Pediatrics (AAP) have partnered to develop Provider Resources for Vaccine Conversations with Parents. These materials include vaccine safety information, fact sheets on vaccines and vaccine-preventable diseases, and strategies for successful vaccine conversations with parents. They are free and available online [https://www.cdc.gov/vaccines/hcp/conversations /index.html].

Reproduced from Centers for Disease Control and Prevention (CDC). (2017a). Childhood immunization drop-in article for health and child care professionals. Retrieved from https://www.cdc.gov/vaccines/partners/childhood/matte-articles-nurses-essential.html

130 Chapter 5 Infant and Child Nursing Ethics

and these children “are now the fastest-growing segment of the nation’s youth, an indication that both legal and illegal immigrants as well as minority births are lifting the nation’s pop- ulation” (“Census: Share of Children in US Hits Record Low,” 2011, para. 3). Public health professionals know that socioeconomic factors are population-level determinants of health, and data reviewed by Borjas (2011) showed family poverty among immigrant children to be about 15% higher than for native children in the United States.

However, as this book manuscript is about to go to publication, the 2010 census data seems so long ago. The political climate and immigration laws in the United States in the summer of 2018 are in chaos. Because of the rapidly changing immigration practices and policies that have occurred during the Trump

administration, it is impossible to assure that information about immigrant children will be up to date when this book is published and used. Therefore, this section of the chapter contains a different, and maybe unusual, type of Ethical Reflection box written by me as the author of this chapter.

▸ Global Problems of Poverty and Infectious Diseases

Statistical data regarding the unmet needs of infants and children worldwide should con- cern all compassionate people, but especially nurses. Of special significance is the fact that

ETHICAL REFLEC TION

As I update this chapter in mid-June 2018, I am watching the television news, and I find myself in a precarious situation as an author. The Trump administration recently announced that it would enforce a “zero tolerance” policy and begin to separate immigrant children from their families at the southern U.S. border as a deterrent to reduce illegal immigration. On TV, U.S. Attorney General Jefferson Beauregard Sessions quoted the Bible to justify the practice. Later, AG Sessions actually was censured by his religious denomination, the United Methodist Church, for his role in the immigration policy. Reports indicate that over 2,000 immigrant children have been separated from their parents since the zero-tolerance policy began. I am hearing sad stories about children being held in detention camps and these young children do not know when or if they will see their mothers again. The internet and television clearly show children being held inside enclosed metal fencing, which several journalists compared to dog kennels; a picture, which has gone viral, showing a small, crying child watching her mother being searched by a border official; and broken-hearted mothers describing their experiences. Catholic priests and other religious leaders are on TV calling the separation practice immoral. Politicians are casting blame at one another in regard to who can and should end the separation practice, and former U.S. First Ladies, both Republican and Democrat, are entering the argument indicating that they too believe the separation practice is cruel and immoral. Finally, I watched Pamela Cipriano, President of the American Nurses Association, being interviewed on a news show. She echoed the call by others asking President Trump to end this policy, stating that nurses have told her the practice is “appalling, despicable, immoral, and un-American.”

As you read this chapter, I call upon readers to research current U.S. immigration laws and practices involving both children and adults. Ask yourself whether you believe the current laws are ethical. On which ethical theories and approaches do you base your position? Debate different positions with your peers. Develop a plan of how nurses can intelligently enter into and influence arguments about immigration policies and what nurses can do to promote ethical practices in relation to these policies.

Global Problems of Poverty and Infectious Diseases 131

so many of the deaths reported in the global health data shown here are the result of condi- tions for which there are low-cost prevention measures or treatment (see TABLE 5-1). Global child health data taken from the World Health Organization (WHO, 2017) website include the following:

■ In 2016, 5.6  million children under the age of 5 years died. This translates into 15,000 under-5 deaths per day.

■ From the end of the neonatal period and through the first 5 years of life, the main causes of death are pneumonia, diarrhea, and malaria.

■ Malnutrition is the underlying contribut- ing factor, making children more vulnera- ble to severe diseases.

■ A child’s risk of dying is highest in the first 28 days of life.

■ The world has made substantial progress in child survival since 1990. The global under-5 mortality rate has dropped by

56%, from 93 deaths per 1,000 live births in 1990 to 41 in 2016. Nonetheless, accel- erated progress will be needed in more than a quarter of all countries to achieve the Sustainable Development Goal (SDG) target on under-5 mortality by 2030.

The last three provisions of the American Nurses Association’s (ANA, 2015) Code of Eth- ics for Nurses with Interpretive Statements focus on nursing “aspects of duties beyond individ- ual patient encounters” (p. xiii). Provision 7.3 addresses nurses’ responsibilities in developing health policy whether the nurse serves as a cli- nician, an educator, or an administrator. The scope of this responsibility is global. Student nurses often wonder why they need health policy content in their nursing curriculum; at least one important reason is that it is a matter of ethics. Compassion is a desire to separate beings from suffering. Being active in develop- ing and changing health policies locally, state- wide, regionally, nationally, or globally can be a

TABLE 5-1 Leading Causes of Death in Postneonatal Children: Risk Factors and Response

Cause of death Risk factors Prevention Treatment

Pneumonia or other acute respiratory illness

■ Low birth weight ■ Malnutrition ■ Nonbreastfed

children ■ Overcrowded

conditions

■ Vaccination ■ Adequate nutrition ■ Exclusive

breastfeeding ■ Reduction of

household air pollution

■ Appropriate care by trained health provider

■ Antibiotics ■ Oxygen for severe

illness

Childhood diarrhea

■ Nonbreastfed children

■ Unsafe drinking water and food

■ Poor hygiene practices

■ Malnutrition

■ Exclusive breastfeeding

■ Safe water and food ■ Adequate

sanitation and hygiene

■ Adequate nutrition ■ Vaccination

■ Low-osmolarity oral rehydration solution (ORS)

■ Zinc supplements

Reprinted from Children: reducing mortality, September 19, 2018. Geneva, World Health Organization, 2018. Copyright © 2018 by WHO. Used with permission.

132 Chapter 5 Infant and Child Nursing Ethics

compassionate nursing action to help vulnera- ble children who are subjected to and die from preventable diseases and conditions. Provision 8 of the Code of Ethics (ANA, 2015) also in- cludes a focus on global health. Provision 8.2 directs nurses to “address the context of health, including social determinants of health such as poverty, access to clean water and clean air, sanitation, human rights violations, hunger, nutritionally sound food, education, safe med- ications and health disparities” (pp. 31–32).

The U.S. Department of Health and Hu- man Services (HHS) annual Child Maltreat- ment report compiled from state reports and published in 2016 contained the following data:

■ The national estimate of children who received a child protective services inves- tigation response or alternative response increased 9.5% from 2012 (3,172,000) to 2016 (3,472,000).

■ The number and rate of victims have fluc- tuated during the past 5 years. Comparing the national rounded number of victims from 2012 (656,000) to the national esti- mate of victims in 2016 (676,000) shows an increase of 3.0%.

■ Three-quarters (74.8%) of victims were neglected, 18.2% were physically abused, and 8.5% were sexually abused.

■ For 2016, a nationally estimated 1,750 children died of abuse and neglect at a rate of 2.36 per 100,000 children in the national population. (p. ii)

Although all states have mandatory child abuse reporting laws, it is believed that abuse is sig- nificantly underreported.

As in previous years, neglect (74.8%) and physical abuse (18.2%) were the most common types of child maltreatment in 2016 (HHS, 2016, p. x). More than half of child abuse perpetrators (53.7%) were women, the high- est rate of abuse was during the first year of a child’s life, and American Indian or Alaska Native children were abused more often than other ethnicities. The ethical responsibility of nurses in the care of children includes the

ETHICAL REFLEC TION

Consider the problems of global poverty and infectious diseases as they affect children, and relate them to social justice. What can nurses do to improve social justice for the world’s population of children? How can critical theory be applied to the global health disparities involving children?

LEGAL PERSPEC TIVE: CAPTA

A federal law that was originally enacted in 1974 titled the Child Abuse Prevention and Treatment Act (CAPTA) was reauthorized in 2010 and last amended in 2016. It is “the key federal legislation addressing child abuse and neglect” (Child Welfare Information Gateway, 2017, p. 1).

▸ Abused and Neglected Children

Child abuse and neglect, at a minimum, are de- fined by the Child Abuse Prevention and Treat- ment (CAPTA) Reauthorization Act of 2010 as

any recent act or failure to act on the part of a parent or caretaker which results in death, serious physical or emotional harm, sexual abuse or ex- ploitation; or an act or failure to act which presents an imminent risk of serious harm. (Child Welfare Infor- mation Gateway, 2013, p. 2)

A child’s being subjected to witnessing do- mestic violence is included in the definition of child abuse and neglect in some state laws. Notice the above definition does not include harm to children perpetrated by acquaintances or strangers, but abuse by these people cer- tainly is covered under relevant laws.

Abused and Neglected Children 133

responsibility to be alert to the signs of abuse and to report abuse appropriately. Nurses, along with other healthcare professionals and teachers, are considered mandatory reporters of possible abuse (HHS, 2016; Ramsey, 2006). Situations that signal possible abuse include the following (for an expanded list of examples of child abuse, see the Child Welfare Informa- tion Gateway document [2013, pp. 3–5]):

■ Conflict between the explanation of how an incident occurred and the physical findings, such as poorly explained bruises or fractures

■ Age-inappropriate behaviors or behaviors that signify poor social adjustment, such as “aggressive behavior, social withdrawal, depression, lying, stealing, thumb suck- ing” (Ramsey, 2006, p. 59), and risk taking (sexual promiscuity, reckless driving, etc.)

■ Alcohol and other drug abuse ■ Problems in school ■ Suicidal ideation

The usual responsibility of handling a pa- tient’s treatment confidentially is waived in the instance of suspected child abuse, even when the person reporting the abuse is the patient (Ramsey, 2006). Abuse does not need to be confirmed as factual to be reportable. The identification of suspected abuse should be promptly reported to the agency designated by each state. There is legal protection in most states for professionals, including nurses, who are reporting suspected abuse in good faith, though healthcare professionals may be ex- posed to legal sanctions if they fail to report suspected abuse to the appropriate agencies.

▸ Surrogate Decision Making

Children are legally incompetent individu- als who, in most cases, must have surrogate decision makers for important life decisions, including healthcare decisions. Ethicists have

established standards accepted as being ethi- cally appropriate for guiding healthcare deci- sions made on behalf of infants and children. The most commonly accepted ethical standard that underlies surrogate decision making for children is based on a standard of best inter- est. When using the best interest standard, surrogate decision makers base their decisions on what they believe will provide the most benefits and the least burdens for the child. The best interest standard is a quality-of-life assessment; when using it, a surrogate deci- sion maker must determine the “highest prob- able net benefit among the available options, assigning different weights to interests the patient has in each option” and discounting or subtracting inherent risks or costs (Beau- champ & Childress, 2013, p. 228). “The best interest standard protects an incompetent person’s welfare by requiring surrogates to assess the risks and probable benefits of vari- ous treatments and alternatives to treatment,” making it “inescapably a quality-of-life crite- rion” (p. 228).

The standard of best interest is similar to the standard of substituted judgment, but the two standards are distinctly different. The aim of the standard of substituted judgment is for a surrogate to make decisions that abide by the previously known (either verbalized or inferred) treatment preferences persons had when they were able to express those prefer- ences (i.e., when they were competent) at a time when persons are no longer able to ex- press treatment preferences (i.e., when they are no longer competent). Thus, some ethicists argue that only a standard of best interest is appropriate when decisions are made for chil- dren or persons incompetent since childhood. When decisions are being made for persons who have never been legally competent, there is no history of known preferences based on the person’s competent thinking.

In using the best interest standard, par- ents must sacrifice their personal goals for their child in favor of the child’s needs and in- terests. Parents are put in a difficult situation

134 Chapter 5 Infant and Child Nursing Ethics

when they must be uncompromising in trying to attend to one child’s best interest when it may conflict with the best interest of another child or children within the same family (Ross, 1998).

Withholding Information from Children Just as with adults, family members may want health information withheld from children when the children are seriously ill or have a terminal condition. This can present a di- lemma for healthcare professionals caught between their patients and patients’ parental surrogate decision makers. In evaluating the ethical acceptability of withholding informa- tion from children, nurses should consider the decreasing acceptability of using therapeu- tic privilege (see Chapter 2). Harrison (2011) proposed that principles of fidelity and truth- fulness are at the heart of the issue in these circumstances. Fidelity and truthfulness also can be viewed from the perspective of virtues. Healthcare professionals are charged with be- ing faithful to their professional, ethical com- mitments to their patients and to interact with their patients truthfully. Truthfulness in prac- tice can be clouded by feelings of paternalism and confusion about where to draw lines with therapeutic privilege.

Withholding information from children and adolescents, like allowances for minors refusing treatment, should be guided by the minor patients’ maturity and developmental status. Consequently, there is no one correct answer to whether health information should be withheld from minors, but there are guide- lines for making decisions (Harrison, 2011):

■ It is difficult to keep secrets in a hospital. Sometimes, patients’ fears arising from lack of information while observing and listening to what actually is happening in the environment is worse than fears resulting from truthful disclosure. Also, older children and adolescents are adept

at gathering information via technological sources.

■ Professionals and parents must determine the risk of harm to the patient if informa- tion is withheld.

■ A multidisciplinary team and an ethics consultation should be involved in deci- sion making.

■ If the team’s determinations differ from those of the parents, attempts should be made to negotiate. Negotiation in terms of when information is disclosed, how quickly it is disclosed, how it is disclosed, and by whom it is disclosed sometimes helps parents accept the importance of adhering to the principles of fidelity and truthfulness in their child’s care.

Refusal of Treatment Parents sometimes refuse treatment for their children, and children themselves may, in some cases, be deemed to have decisional ca- pacity to refuse treatment based on religious beliefs or other reasons. In general, religious and cultural beliefs are given respect in health- care matters and protected through liberties granted by the U.S. Constitution (Jonsen, Siegler, & Winslade, 2006, 2010). Serious con- sideration must be given to the wishes of ma- turing children who are judged to have good insight about the benefits and burdens of their healthcare treatment. The following factors should be taken into consideration and care- fully weighed when evaluating the extent of autonomy to be granted to minor children in refusing health care, keeping in mind, how- ever, that efforts need to be made not to under- mine the relationship between children and their mothering person (Jonsen et al., 2006):

■ The support for the child’s request by the child’s mothering person

■ The severity of the child’s condition, such as a child with a terminal and irreversible condition who refuses additional pain- ful treatment versus a situation, such as

Surrogate Decision Making 135

meningitis, in which the child’s condition is acute and reversible

■ The consequence of direct harm to the child that potentially could result from the child’s decision and the child’s realistic un- derstanding of the possible consequences

■ Fear, distress, or parental pressure as a motivation for the child’s decision

the child’s condition and the direct harm to the child that could result from non- treatment should be evaluated. The child should be treated even against the wishes of the parents to prevent or cure serious disease or disability.

■ Blood transfusions should be given to a child of a Jehovah’s Witness when transfu- sions are needed to protect the child from the serious complications of disease or in- jury. Court authority need not be sought in an emergency situation because legal precedent protects the safety of the child.

When analyzing the ethical path to take in re- gard to refusals of treatment for children, con- sultation may need to be sought from mental health practitioners or an ethics committee.

▸ Impaired and Critically Ill Children

When neonatal intensive care units (NICUs) were developed in the 1960s, the goal was to increase the likelihood that premature babies would survive. Many medical and techno- logical advances followed, and researchers are still making strides in neonatology today. NICUs are often complicated and scary places for parents who are grappling with the trauma of having a severely impaired or terminally ill neonate. Parents frequently must make life-and-death decisions about their infants within a context that would be highly stressful even in the best of circumstances. NICUs are often emotionally charged places for nurses too as they watch the miracles of life play out before them while they also share in the expe- rience of a family’s deepest suffering.

Quality of Life A term pregnancy is 40 weeks. In developed countries, the lower limit of viability for newborns is about 22 weeks and sometimes, 21 weeks, and the upper limit is 26 weeks.

LEGAL PERSPEC TIVE: PROTEC TION OF VULNERABLE CHILDREN

Courts have consistently intervened to order blood transfusions for the minor children of Jehovah’s Witnesses. Courts were once inclined to order transfusion for a parent whose death would leave children orphaned but now rarely do so because alternative care for children is usually available.

Jonsen, A. R., Siegler, M., & Winslade, W. J. (2010). Clinical ethics: A practical approach to ethical decisions in clinical medicine (6th ed.). New York, NY: McGraw-Hill, p. 79.

Parental autonomy with regard to a child’s healthcare treatment is usually given wide lat- itude (Jonsen et  al., 2006, 2010; Ross, 1998); however, some parental refusals are consid- ered to be abusive or neglectful. State laws protect children from parental healthcare de- cisions based on religious or other beliefs that can result in serious risk or harm to the child (Jonsen et al., 2006). Nevertheless, many states do not prosecute parents for abuse or neglect if they try to refuse treatment based on religious beliefs. In general, the following principles are followed in overriding parental autonomy in the treatment of children:

■ The parent or parents are not given the right of parental autonomy if they are deemed to be incapacitated or incompe- tent because of factors such as substance abuse, certain psychiatric disorders, min- imal ability to comprehend the best inter- est of the child, or habitual physical abuse.

■ As is done when considering respect for the autonomy of a child, the severity of

136 Chapter 5 Infant and Child Nursing Ethics

However, some people believe “the survival rate for babies born at 22–24 weeks is too low and the rate of disabilities among survivors is too high” to be justifiable in expending scarce resources on active interventions (Janvier & Lantos, 2011, loc. 3935). Whether one fo- cuses on the justice of fairly distributing scarce healthcare resources, not violating the princi- ple of nonmaleficence by inflicting harm on a newborn or child, or matters of beneficence in trying to do good for both patients and fam- ilies, quality-of-life determinations become a part of these important ethical analyses.

In regard to quality-of-life determina- tions for newborns and children, it is import- ant to refer back to the ethical foundation of surrogate decision making for children, that is, the standard of best interest. There are at least two differences between how quality- of-life decisions are judged for infants and children as opposed to how they are judged for adults (Jonsen et al., 2010). Adults are ei- ther able to verbalize preferences reflecting their personal evaluations about the quality of their lives or other people have a general idea of those preferences when an adult be- comes incapacitated. In contrast, “in pediat- rics, the life whose quality is being assessed is almost entirely in the future, and no ex- pression of preferences is available” (p. 158). Quality of life cannot be measured objectively like an Apgar score, though efforts have been made to measure it through quantitative tools (Wyatt, 2011).

Healthcare professionals must be aware of any tendencies they have to judge the quality of life of pediatric patients as lower than the children, to the best of their ability, or their mothering person would judge it. In review- ing research about health-related quality of life (HRQL) and children, Wyatt (2011) found studies showing the following:

■ Children with cerebral palsy rated their HRQL higher than their parents rated it.

■ Healthcare professionals rated children’s HRQL even lower than parents’ negative perceptions.

■ Family dysfunction of various types in families with extremely low-birth-weight infants with neuroimpairment was no higher than in families with normal- birth-weight babies.

■ Healthcare professionals’ assumptions that infant impairment will lead to lower well-being in adolescence and adulthood was not borne out by data.

Healthcare professionals talk considerably about the importance of evidence-based prac- tice. However, do nurses and other healthcare professionals take time to find evidence in forming perspectives about HRQL? Nurses are not in a position to make major, ethics-laden treatment decisions in the care of infants and children; even advanced practice nurses, such as nurse practitioners who work in obstetrics and NICUs, work in collaboration with other healthcare professionals. However, all nurses who work with children should be patient ad- vocates and are potentially very influential in the healthcare decisions made by parents and other healthcare providers. Practical wisdom, in the tradition of Socrates, Plato, and Aris- totle, and the good character of nurses are es- sential elements in the compassionate care of children.

Withholding and Withdrawing Treatment A comprehensive discussion of end-of-life is- sues generally can be used as a basis for con- sidering decisions about withholding and withdrawing treatment for children; infants, however, fall into a special class of persons in regard to withholding and withdrawing treatment.

Anyone who is seriously interested in the study of nursing and healthcare ethics realizes it is difficult to separate ethics from related laws, governmental regulations, and public policies. In evaluating the ethical care of in- fants in terms of withholding and withdraw- ing treatment, it is helpful to understand the

Impaired and Critically Ill Children 137

history and circumstances involved with sev- eral landmark cases. Some of these cases help to summarize and clarify the usual expected actions with regard to the treatment of infants, although conclusions about the ethical direc- tions provided by these cases are by no means without dispute. The following discussion is based on public information about these cases and a history provided by Pence (2004).

1971: Johns Hopkins Cases In the 1970s, two infants with Down syndrome were “allowed to die” at Johns Hopkins Hospi- tal, based on what some people believe were the selfish motives of the parents (Pence, 2004, p. 217). A third infant with Down syndrome was referred to Johns Hopkins shortly there- after because of the hospital’s reputation for allowing the other two infants to die. However, at this point the hospital staff presented a more balanced view of the infant’s prognosis that re- sulted in a different outcome: the third baby was treated and lived.

1984: Child Abuse Amendments (Baby Doe Rules) The Child Abuse Amendments of 1984, also referred to as the Baby Doe rules, are based on the case of Infant Doe, who was born in Indiana in 1982. “Baby Doe cases arise when parents of impaired neonates or physicians charged with the care of these neonates ques- tion whether continued treatment is worth- while and consider forgoing treatment in order to hasten death” (Pence, 2004, p. 216).

Many of the events in the short life of In- fant Doe greatly influenced precedence and directions of the treatment for impaired new- borns. Infant Doe was born on April 9, 1982, and died 6 days later (Pence, 2004). The con- troversy surrounding the care of Infant Doe was based on disagreements about whether treatment should be withheld because the infant had Down syndrome and a tracheo- esophageal fistula. The obstetrician who de- livered Infant Doe discouraged the parents from seeking surgical correction of the fistula and indicated the baby might become a “mere blob” (Pence, 2004, p. 220). Based on the ob- stetrician’s recommendations and their own beliefs, the parents refused care for their infant. Hospital staff and administrators disagreed with this decision and appealed the decision to a county judge. No guardian ad litem was appointed for the baby, and an unrecorded,

ETHICAL REFLEC TION

Infant Charlie Gard was born in Great Britain on August 4, 2016, with a rare, inherited, and fatal condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). A legal battle ensued among Charlie’s parents, the Great Ormond Street Hospital in London, and the British court system when the Gards wanted to take their infant to the United States for a noninvasive experimental treatment. The fight was publicized worldwide, and a U.S. physician agreed to accept Charlie. Though Charlie’s parents raised money for the treatment, the case stalled so long in the court system that Charlie’s condition deteriorated to the point that his parents gave up their fight. Charlie died on July 28, 2017, in hospice care.

1. With your peers, form at least two groups. In your group, thoroughly research the events in Charlie’s case.

2. Use the Four Topics Method (see Table 2-1 in Chapter 2) to analyze Charlie’s case.

3. One group should approach the case from the perspective of an ethics committee at the Great Ormond Street Hospital, and the other group should approach the case from the perspective of an ethics committee at the U.S. hospital considering accepting Charlie for treatment.

4. Make a recommendation about Charlie’s care based on your analysis of the case.

5. Present your group’s analysis to your peers.

138 Chapter 5 Infant and Child Nursing Ethics

middle-of-the-night hearing was conducted by the judge at the hospital. The meeting re- sulted in the judge’s support for the parents’ decision. The hospital staff appealed the de- cision unsuccessfully all the way to the Indi- ana Supreme Court. They were in the process of taking the case to the U.S. Supreme Court when Infant Doe died.

The specific details of what followed these events are interesting but beyond the scope of this chapter. The ultimate outcome is that the media attention given to the Infant Doe case precipitated action by the Reagan administra- tion, specifically the U.S. Department of Justice and the U.S. Department of Health and Human Services (Pence, 2004). Baby Doe rules were published by the federal government and be- came effective on February 12, 1984. The rules were based on Section 504 of the Rehabilitation Act of 1973, which forbids discrimination based entirely on a person’s handicaps. The Baby Doe rules provide for a curtailment of federal funds to institutions that violate the regulations.

According to Pence (2004), “this inter- pretation by the Justice Department created a new conceptual synthesis: imperiled newborns were said to be handicapped citizens who could suffer discrimination against their civil rights” (p. 221). It is noteworthy that the federal Sec- ond Circuit Court of Appeals issued a ruling within 10 days of the Baby Doe rules that made the new rules essentially unenforceable. This ruling was based on the case of Baby Jane Doe.

Baby Jane Doe: Kerri-Lynn Baby Jane Doe, Kerri-Lynn A., was born in 1983 at St. Charles Hospital in Long Island, New York. She was transferred to the NICU at the University Hospital of the State Uni- versity of New York (SUNY) at Stony Brook because of her complicated condition at birth. Kerri-Lynn was born with spina bifida, hy- drocephalus, an impaired kidney, and micro- cephaly (Pence, 2004). Her parents were lower middle-class people who had been married for only 4 months when Kerri-Lynn was con- ceived. After Kerri-Lynn was born, there was disagreement among the medical staff and other people about whether she should be treated or provided with comfort measures (food, hydration, and antibiotics) and allowed to die. The parents decided in favor of with- holding aggressive treatment.

The controversy resulted in legal proceed- ings, eventually including the involvement of the U.S. Department of Justice and the U.S. Department of Health and Human Services. Leaders within these agencies wanted to send representatives to review Kerri-Lynn’s medical records to ascertain whether the Baby Doe rules were being violated. However, the parents and the hospital objected to allowing the govern- ment representatives to review the records. Ulti- mately, a federal appeals court and then the U.S. Supreme Court ruled in favor of the parents and the hospital in the case of Bowen v. American Hospital Association et al. in 1986 (Pence, 2004).

This ruling essentially removed the en- forcement potential from the Baby Doe rules. The rules cannot be enforced if the govern- ment has no authority to review the individ- ual medical records of infants to determine if the rules are being violated. The Supreme Court explained that because the parents do not receive federal funds for the provision of medical care, their decisions are not bound by Section 504 of the Rehabilitation Act (Pence, 2004). Baby Jane Doe’s parents later allowed the recommended surgery to be performed (see BOX 5-1). The attorney who represented

LEGAL PERSPEC TIVE: THE CASE OF INFANT DOE

The U.S. Civil Rights Commission reviewed the Infant Doe case in 1989, along with other Baby Doe cases, and “the commission concluded that [the obstetrician’s] evaluation was ‘strikingly out of touch with the contemporary evidence on the capabilities of people with Down syndrome’ ” (U.S. Commission on Civil Rights, as cited by Pence [2004, p. 220]).

Impaired and Critically Ill Children 139

her parents reported in 1998 that Kerri-Lynn was 15 years old and living with her parents.

Although “in reality [the Baby Doe reg- ulations] do not apply directly to physicians, nurses, or parents, it does get the attention of many” (Carter & Leuthner, 2003, p. 484). The Child Abuse Amendments of 1984 (Baby Doe rules) generally provide three reasons to with- hold treatment from newborns; confusion re- mains, however, about whether the rules are an attempt to mandate nutrition, hydration, and medications for all neonates. This confusion, in addition to the compassion most people feel toward a dying or severely impaired child, is one reason healthcare professionals experi- ence moral uncertainty in relation to decisions about withholding and withdrawing treatment from neonates. The 1984 amendments state the following:

The term “withholding of medically indicated treatment” does not in- clude the failure to provide treatment (other than appropriate nutrition, hy- dration, or medication) to an infant when, in the treating physician’s .  .  . reasonable medical judgment:

1. the infant is chronically and irreversibly comatose,

2. the provision of such treat- ment would a. merely prolong dying, b. not be effective in amelio-

rating or correcting all of the infant’s life- threatening conditions, or

c. otherwise be futile in terms of the survival of the infant, or

3. the provision of such treat- ment would be virtually futile in terms of the survival of the infant and the treatment it- self under such circumstances would be inhumane. (U.S. Child Abuse Amendments of 1984, as cited in Carter & Leuthner [2003, p. 484])

According to Carter and Leuthner (2003), the language in these rules addressing situa- tions in which aggressive treatment of infants is not required can be interpreted to mean two things with regard to nutrition: “(1) every in- fant should always be provided with medical means of nutrition [or] (2) every infant should receive nutrition appropriate for his/her medi- cal situation” (p. 484).

Carter and Leuthner (2003) proposed that the Baby Doe rules should not be interpreted to restrict or prevent the withdrawal of nutri- tion. However, interpretations of the rules with regard to withholding and withdrawing nutri- tion, hydration, and medications vary among healthcare providers and institutions, and as mentioned previously, healthcare providers experience moral uncertainty regarding these rules. When situations arise that precipitate discussions about withholding and withdraw- ing nutrition and hydration from newborns, the involvement of an ethics committee is recommended. It also may be helpful for

BOX 5-1 The Case of Kerri-Lynn

In 1994, B. D. Colen was a lecturer in social medicine at Harvard University. He provided an update on Kerri-Lynn:

Now a 10-year-old . . . Baby Jane Doe is not only a self-aware little girl, who experiences and re- turns the love of her parents; she also attends a school for developmentally disabled children— once again proving that medicine is an art, not a science, and clinical decision making is best left in the clinic, to those who will have to live with the decision being made. (Pence, 2004, p. 226)

140 Chapter 5 Infant and Child Nursing Ethics

healthcare professionals serving on an ethics committee to obtain consultation from ethi- cists who specialize in pediatric care.

In 2007, the American Academy of Pedi- atrics issued a policy statement covering the noninitiation or withdrawal of intensive care for high-risk newborns (Committee on Fetus and Newborn, 2007). The directive to make decisions in partnership with parents and in the best interest of the child is emphasized throughout the statement. The committee re- affirmed its previous position that treatment decisions should consider serious birth defects, prognosis, and future disability as predicted by the best data available. Because ethicists agree in regard to adult patients, the committee as- serted that there is essentially no ethical dif- ference between withholding and withdrawing care with high-risk neonates.

The difficulty in predicting long-term outcomes of extremely premature or termi- nally ill infants serves to intensify decision dilemmas. An ethical dilemma involves a situ- ation in which one must choose between two choices and neither choice is good or the better choice is unclear. If intensive care is chosen, an infant may experience a prolonged dying pro- cess, suffering, or futile care (Committee on Fetus and Newborns, 2007). If intensive care is not chosen, increased morbidity and mor- tality occur.

Generally, healthcare professionals are not obligated to provide patients with futile care, though this practice was successfully chal- lenged in the case of Baby K (as seen in the next section). Regardless, healthcare profes- sionals must remember that the patient should be their primary focus of concern. If parents and healthcare professionals disagree about a child’s treatment, discussion should occur to reach an agreement. If agreement is still not forthcoming, an ethics committee consulta- tion should be sought. Offering to transfer the child to other healthcare providers may be necessary. Finally, getting help from the legal system should be the last option in the process of resolving disagreements.

1993: In the Matter of Baby K Although the Baby Doe rules provide a basis for the right of parents to refuse treatment for their severely disabled newborns, the ruling left the unanswered question of whether par- ents also have the right to insist on treatment for their newborns when medical staff believe the treatment would be futile or useless. The landmark case that provides a precedent for this type of situation involved Baby  K, born with anencephaly in 1992. Baby K’s mother insisted that a hospital provide maximum treatment for her child, including ventila- tor support. Hospital physicians disagreed with the mother’s wishes and proposed that warmth, nutrition, and hydration were all that should be provided in Baby K’s care. The case was taken to the legal system for resolution. In reviewing this case, judges noted that medical assessments indicated Baby K was not being subjected to care requested by her mother that would cause the baby pain or suffering. Judges serving on the U.S. Court of Appeals for the Fourth Circuit ruled in favor of the mother and ordered the hospital to provide the level of care Baby K’s mother requested (In the Matter of Baby K, 1993).

▸ The Influence of Nurses: Character

Those who stand for nothing, fall for anything.

—Alexander Hamilton

The good character or virtuous behavior of nurses, other healthcare professionals, and parents is not the only character relevant to the well-being of children. A child’s own char- acter development is important too. School nurses are in a special position to help with this, and any nurse who works with children would do well to keep in mind the importance of influencing the development of a child’s good character and educating others about

The Influence of Nurses: Character 141

this development. Ryan and Bohlin (1999) suggested that children need to be engaged in “heart, mind, and head” to know “who [they] are” and “what [they] stand for” (pp. xvi–xvii).

The search for the meaning of life over- shadows almost all human endeavors in people young and old. In the fast-paced world of the 21st century, parents are busy trying to provide their families with necessities and physical comforts, and children are often busy playing video games and watching television—there is scarcely time to ponder the greater mysteries of life. Ryan and Bohlin (1999) proposed that “detached from a conception of the purpose of life, virtues become merely nice ideals, empty of meaning” (p. 39). They suggested adults should not fear stimulating children to pon- der the age-old question about why they were born. Many children, but particularly children who are ill, think about the meaning of life even when they do not know how to articu- late their feelings. Nurses can provide these children with a kind hand and a warm heart during frightening times.

Anytime is a good time to take the op- portunity to educate children in the develop- ment of moral and intellectual virtues. Stenson

(1999) proposed three ways to help children internalize virtuous habits and strengths of character when they are on their journey from infancy to adulthood. The three means of in- ternalization, and the order in which they oc- cur, are as follows:

1. By example: Children learn from what they witness in the lives of parents and other adults they re- spect (and thus, unconsciously imitate).

2. Through directed practice: Chil- dren learn from what they are re- peatedly led to do or are made to do by parents and other respected adults.

3. From words: Children learn from what they hear from parents and other respected adults as explana- tions for what they witness and are led to do. (p. 207)

Nurses are patient advocates, but they also are role models. Nurses may never know when the example they show to children and their mothering person may influence the future of a child or the future of nursing.

KEY POINTS

■ The words mother and mothering person can be gender neutral. ■ Children and other people may be harmed when children are not immunized. Nurses must

understand the best ways to interact with parents who refuse to have their children immunized. ■ Globally, many children become sick and die every year from preventable diseases and conditions. ■ Nurses are mandatory reporters of child abuse. There is legal protection in most states for nurses

who report suspected child abuse in good faith. ■ The best interest standard is generally the ethical approach used in making difficult decisions

about the healthcare treatment of children. ■ Children often perceive their own health-related quality of life to be higher than their parents or

healthcare professionals perceive it to be. ■ The ethics of allowing children themselves or their parents to refuse healthcare treatments is based

on a number of factors. These factors include the severity of the potential harm to the child that may result from the refusal.

■ The Child Abuse Amendments of 1984 are frequently referred to as the Baby Doe rules. Although these rules lack power in actual enforcement, they are influential in decisions regarding the withholding and withdrawing of supportive care for infants.

142 Chapter 5 Infant and Child Nursing Ethics

References Dalai Lama. (1999). Ethics for the new millennium. New

York, NY: Riverhead Books. Erikson, E. H. (1985). Childhood and society (35th

ed.). New York, NY: W. W. Norton. (Original work published 1950)

Harrison, C. (2011). Fidelity and truthfulness in the pediatric setting: Withholding information from children and adolescents. In D. S. Diekema, M. R. Mercurio, & M. B. Adam (Eds.), Clinical ethics in pediatrics: A case-based textbook [Kindle version] (loc. 1545–1773). New York, NY: Cambridge University Press.

Held, V. (1993). Feminist morality: Transforming culture, society, and politics. Chicago, IL: University of Chicago Press.

In the Matter of Baby K 832 F. Supp. 1022 (E.D. Va. 1993). Janvier, A., & Lantos, J. D. (2011). Variations of practice

in the care of extremely preterm infants. In D. S. Diekema, M. R. Mercurio, & M. B. Adam (Eds.), Clinical ethics in pediatrics: A case-based textbook [Kindle version] (loc. 3935–4150). New York, NY: Cambridge University Press.

Jonsen, A. R., Siegler, M., & Winslade, W. J. (2006). Clinical ethics: A practical approach to ethical decisions in clinical medicine (6th ed.). New York, NY: McGraw-Hill.

Jonsen, A. R., Siegler, M., & Winslade, W. J. (2010). Clinical ethics: A practical approach to ethical decisions in clinical medicine (7th ed.). New York, NY: McGraw-Hill.

MacIntyre, A. (1999). Dependent rational animals: Why human beings need the virtues. Chicago, IL: Open Court.

Nussbaum, M. C. (2001). Upheavals of thought: The intelligence of emotions. New York, NY: Cambridge University Press.

Pence, G. E. (2004). Classic cases in medical ethics: Accounts of cases that have shaped medical ethics, with philosophical, legal, and historical backgrounds (4th ed.). Boston, MA: McGraw-Hill.

Ramsey, S. B. (2006). Abusive situations. In S. W. Killion & K. Dempski (Eds.), Quick look nursing: Legal and ethical issues (pp. 58–59). Sudbury, MA: Jones and Bartlett Publishers.

Ross, L. F. (1998). Children, families, and health care decision-making. Oxford, UK: Oxford University Press.

Ruddick, S. (1995). Toward a politics of peace. Boston, MA: Beacon Press.

Ryan, K., & Bohlin, K. E. (1999). Building character in schools: Practical ways to bring moral instruction to life. San Francisco, CA: Jossey-Bass.

Stenson, J. B. (1999). Appendix C: An overview of the virtues. In K. Ryan & K. E. Bohlin (Eds.), Building character in schools: Practical ways to bring moral instruction to life (pp. 207–211). San Francisco, CA: Jossey-Bass.

American Nurses Association. (2015). The code of ethics for nurses with interpretive statements. Silver Springs, MD: Author.

Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.). New York, NY: Oxford.

Borjas, G. J. (2011). Poverty and program participation among immigrant children [PDF file]. Retrieved from https://files.eric.ed.gov/fulltext/EJ920375.pdf

Carter, B. S., & Leuthner, S. R. (2003). The ethics of withholding/withdrawing nutrition in the newborn. Seminars in Perinatology, 27(6), 480–487.

Census: Share of children in US hits record low. (2011). Retrieved from https://www.dailyherald.com/article /20110712/business/110719848/

Centers for Disease Control and Prevention (CDC). (2012). If you choose not to vaccinate your child, understand the risks and responsibilities [PDF file]. Retrieved from https://www.cdc.gov/vaccines/hcp /patient-ed/conversations/downloads/not-vacc-risks -color-office.pdf

Centers for Disease Control and Prevention (CDC). (2016a). Chickenpox (Varicella): Transmission. Retrieved from https://www.cdc.gov/chickenpox/about/transmission .html

Centers for Disease Control and Prevention (CDC). (2016b). Vaccines for your children: Protect your child at every age. Retrieved from https://www.cdc.gov /vaccines/parents/protecting-children/index.html

Centers for Disease Control and Prevention (CDC). (2017a). Childhood immunization drop-in article for health and child care professionals. Retrieved from https://www.cdc.gov/vaccines/partners/childhood /matte-articles-nurses-essential.html

Centers for Disease Control and Prevention (CDC). (2017b). Provider resources for vaccine conversations with parents. Retrieved from https://www.cdc.gov /vaccines/hcp/conversations/index.html

Centers for Disease Control and Prevention (CDC). (2017c). Public health law program. Retrieved from https://www.cdc.gov/phlp/publications/topic /vaccinations.html

Centers for Disease Control and Prevention (CDC). (2017d). State school immunization requirements and vaccine exemption laws [PDF file]. Retrieved from https://www .cdc.gov/phlp/docs/school-vaccinations.pdf

Child Welfare Information Gateway. (2013). What is child abuse and neglect? Recognizing the signs and symptoms [PDF file]. Retrieved from https://www.childwelfare .gov/pubPDFs/whatiscan.pdf

Child Welfare Information Gateway. (2017). About CAPTA: A legislative history [PDF file]. Retrieved from https:// www.childwelfare.gov/pubPDFs/about.pdf

Committee on Fetus and Newborn. (2007). Noninitiation of withdrawal of intensive care for high-risk newborns. Pediatrics, 119(2), 401–403.

143References

Stimpson, C. R. (1993). Series editor’s foreword. In V. Held (Ed.), Feminist morality: Transforming culture, society, and politics (pp. vii–ix). Chicago, IL: University of Chicago Press.

Tong, R. (1997). Feminist approaches to bioethics: Theoretical reflections and practical applications. Boulder, CO: Westview.

U.S. Department of Health and Human Services (HHS). (2016). Child maltreatment, 2016 [PDF]. Retrieved from https://www.acf.hhs.gov/sites/default/files/cb /cm2016.pdf

World Health Organization (WHO). (2017). Children: Reducing mortality. Retrieved from http://www.who .int/news-room/fact-sheets/detail/children-reducing -mortality

Wyatt, J. (2011). The role of quality of life assessments in neonatal care. In D. S. Diekema, M. R. Mercurio, & M. B. Adam (Eds.), Clinical ethics in pediatrics: A case-based textbook [Kindle version] (loc. 3749–3920). New York, NY: Cambridge University Press.

144 Chapter 5 Infant and Child Nursing Ethics

Adolescent Nursing Ethics Janie B. Butts

OBJECTIVES

After reading this chapter, the reader should be able to do the following:

1. Explore the phases of adolescent development. 2. Compare trust, privacy, and confidentiality and their significance regarding healthcare

information, nursing care of adolescents, and adolescent decision-making capacity. 3. Delineate the major at-risk behaviors in which adolescents engage. 4. Examine the major causes of adolescent deaths. 5. Evaluate the significance of appropriate and inappropriate communication by health educators

who teach adolescents a prevention program with health risk messages. 6. Discuss other critical health issues triggering ethical concerns, such as depression and suicidal

ideation, alcohol and other drug use, sexual abuse, and eating disorders and associated websites, such as Ana Boot Camp, Thin Intentions Forever, My Pro Ana Forum, MissAnaMiaforum, and other sites.

7. Delineate the five stages of grief that adolescents and others experience during their own dying process.

8. Discuss essential competencies that nurses should demonstrate during the planning and care of adolescents, and include the major concepts from the American Nurses Association (ANA, 2015) Code of Ethics for Nurses with Interpretive Statements.

▸ The Age of Adolescence

Good and bad experiences shape the way ado- lescents make life decisions and move toward independence. Through these tempestuous times, adolescents somehow develop their

identity and sense of sexuality. Experts de- scribe adolescence as a period of transition that differs in length for each person and occurs during the second decade of life (DiClemente, Hansen, & Ponton, 1996; Leffert & Petersen, 1999). It is a time of a remarkable succession of physical, cognitive, emotional, moral, and psychosocial development changes.

145

CHAPTER 6

© Gajus/iStock/Getty Images

Three separate phases, spanning 11 years, characterize the adolescent developmental process (“Issues in Providing Health Mainte- nance to Adolescents,” 2002). Early adoles- cence (ages 11–13) is a transitional period from childhood to middle adolescence and is usu- ally marked by the onset of puberty, concrete thinking, testing the parental value system, preferring peers to parents, experimentation, and discovery. Middle adolescence (ages 14– 18) is dominated by peer pressure; peer orien- tation; self-centeredness; concrete thinking with a developing ability to think abstractly; and stereotypical behaviors, such as following clothing trends and listening to music that is accepted by peers. Late adolescence (ages 18–21) usually indicates a transition from ad- olescence to adulthood and is characterized by abstract thinking, idealism, and individual re- lationships rather than a focus on peer groups. Late-stage adolescents generally begin to place more importance on their future and life plans as they advance through this stage.

Adolescents have a need to find out who they are and a desire to push limits and test unknown waters. Most adolescents, especially in the early and middle stages, make decisions based on their values from concrete thinking, the pressure of peer approval, and exposure to a quickly changing world around them. Mistakes and failures, but also successes, will occur along the way. Adolescents need to be encouraged to make autonomous decisions and express their values and preferences on a continuous basis so they will evolve to matur- ity with a defined sense of self.

▸ Ethical Issues and Concerns Involving Adolescents

The age of adolescence brings with it over- powering family decision-making issues and health concerns, and as a result, complex

ethical issues arise (BOX 6-1). Perplexing ques- tions arise when relationships between parents (or guardian or others) and adolescents begin to disintegrate swiftly into disharmony. The focus of adolescents’ ethical issues is mostly on rights—the rights all people expect. Some of those rights include the right of freedom to consent to or refuse treatment; the right to confidentiality and privacy of one’s med- ical record; and the right not to be violated, exploited, or taken advantage of in terms of membership in a vulnerable age group. Con- ducting research with adolescents is a concern.

BOX 6-1 Ethical Issues and Concerns Involving Adolescents

■ Adolescent relationships and communication

■ Confidentiality, privacy, and trust • Trust–privacy–confidentiality dilemma • Limits of confidentiality

■ Respect for autonomy and the consent process

■ Adolescent risk-taking behaviors, nonmaleficence, and beneficence • Prevention education for adolescent

risk-taking behaviors Abstinence-only programs or comprehensive sex education programs

• Pregnancy and abortion related to unprotected sex

• Human immunodeficiency virus (HIV ) and sexually transmitted infections (STIs) related to unprotected sex

• Alcohol and other drug abuse related to adolescents

• Eating disorders related to adolescents • Depression and suicidal ideation

related to adolescents • Sexual abuse related to adolescents • Facing death

Losing a loved one Adolescents facing their own death

146 Chapter 6 Adolescent Nursing Ethics

Adolescent Relationships and Communication Relationships are central to the adolescent’s life. Because of the value adolescents place on relationships, nurses need to remember that positive and negative relationship skills learned within a family continue with children into the adolescent stage. Because of these re- lationships, adolescents experience a complex set of patterns and feelings, some of which are hidden hurts. Some of the feelings include a sense of happiness, sadness, excitement, anger, fear, frustration, stress, and loneliness (Univer- sity of Illinois Extension, 2018).

Adolescents want and need to be heard and understood; parents want to give their opinions and be heard. Adolescents want re- lationships of their own with each other with- out interference from authority figures. On the other hand, healthcare and other professionals want to educate adolescents on illness man- agement or prevention of harm, and media personnel want to grab adolescents’ attention by whatever means necessary. Communica- tion is critical in adolescent relationships.

One of the most common assertions nurses hear from adolescents is “My parents don’t lis- ten to me!” Ironically, parents often say, “My kid won’t listen to me!” When it comes to other relationships involving adolescents, similar statements are sometimes made: “My teacher doesn’t listen to my complaints,” “That nurse didn’t understand my problem,” and so on.

Mindfulness and effective listening strategies mean the nurse is paying close atten- tion to what is being said and then gives a signal of awareness and understanding to the speaker. Communication is an ideal ethical nursing competency that encompasses mindfulness and effective listening. Nurses have an ethical obligation to provide competent care and build positive relationships to promote better patient outcomes. By practicing mindfulness and ef- fective listening, nurses will earn the respect of most young people, which is a critical factor in nurse–adolescent relationships.

Confidentiality, Privacy, and Trust Confidentiality, privacy, and trust cannot be viewed as separate entities in a nurse– adolescent relationship. From an ethical standpoint, confidentiality, privacy, and trust are tightly woven with respect for autonomy, the adolescent’s right to privacy, and the rights of service. Confidentiality is linked with pri- vacy and trust and usually means informa- tion given to the nurse or physician is to be kept secret and not shared with third parties without express consent. Nurses have an eth- ical and legal obligation to keep records con- fidential. Privacy allows the freedom from an intrusion into one’s personal information and matters, such as any action for which a person has a reasonable expectation of privacy. Trust means that adolescents sometimes explore their vulnerabilities with healthcare providers while believing that providers will not take ad- vantage of them. In other words, adolescents believe providers are reliable and dependable in managing their health and vulnerabilities. Any breach of confidentiality, privacy, or trust is viewed as a violation of autonomy.

Trust is important to a healthy and re- spectful relationship. If trust is broken and mistrust develops, it is very difficult for the in- former (nurse) to regain trust. Adolescents will probably refuse to listen to anything nurses try to convey. Trust is a basic need that must be developed in the first stage of life, according to Erikson (1963). If trust is broken early in an individual’s life, mistrust carries to all of the person’s relationships.

If adolescents do not trust the nurse, they may not listen to explanations during an in- formed consent process. Nursing strategies to promote a trusting relationship with ado- lescents are highlighted in the box Ethical Re- flection: Strategies for Promoting a Trusting Relationship with Adolescents. These activi- ties, when combined, help indicate the trust- worthiness of nurses, meaning that nurses are dependable and authentic because they take

Ethical Issues and Concerns Involving Adolescents 147

responsibility for their own behavior and com- mit to their obligations (Gullotta, Adams, & Markstrom, 2000).

can seek family planning services at the state level, such as counseling and contraception through the Planned Parenthood Federation of America. Each state has a broad range of laws stemming from federal laws concerning confidentiality and consent of adolescents.

In the United States, the exception to ad- olescent autonomy over medical records in- volves the issue of abortion. See the box Legal Perspective: Parental Involvement in Minors’ Abortions by States in 2018 for a description of the degree of parental involvement in mi- nors’ abortions.

Even with required parental consent, the 37 states with this requirement have sought ways to work around complete parental in- volvement by having a judicial bypass, meaning adolescents may obtain approval from a court to bypass parental involvement. An example of this process is abortion. Seven of these 37 states also permit family members other than parents, such as an aunt or a grandparent, to be involved in the abortion decision so adoles- cents can avoid informing their parents. Most states allow for exceptions to the parental in- volvement law when abortions become a med- ical emergency or an extraordinary situation exists, such as when the pregnancy was the result of sexual assault or incest.

Limits of Confidentiality From the beginning of their interaction, nurses need to assure adolescents of the importance they place on confidentiality in the nurse– patient relationship. However, confidentiality must never be guaranteed because it can be breached in instances that place the adolescent or others at harm or in danger—an exception called limits of confidentiality (University of Chicago, 2013). Nurses should ensure they will not breach confidentiality unless harm or a potential threat to the patient or to known others is involved. In cases of potential harm, an adolescent must always be given a chance to disclose sensitive or controversial information

ETHICAL REFLEC TION: STRATEGIES FOR PROMOTING A TRUSTING RELATIONSHIP WITH ADOLESCENTS

The most important way for nurses to gain the trust of adolescents is by relentlessly proving themselves in the following ways:

■ Be consistent. ■ Give correct information. ■ Keep commitments. ■ Show concern and caring.

Trust–Privacy–Confidentiality Dilemma A legal, ethical, political, and practice issue surfaces when a trusting relationship exists and the nurse is entrusted with an adoles- cent’s confidential information. Sometimes, the nature of the information pertaining to a sensitive issue is potentially harmful to the ad- olescent if it is not reported to proper author- ities or others (University of Chicago, 2013). Adolescents are concerned about their privacy and what others think of them, especially their parents and peers. Nurses need to ensure that adolescents are examined privately and away from their parents and peers. Often, the phys- ical and emotional health outcomes of risky behaviors force adolescents to seek medical treatment. Because of the sensitive issues in- volved and a potential for these issues to cause embarrassment, adolescents want to keep the information private and especially do not want their parents to know.

Well-established research findings in the United States reveal that the likelihood of adolescents seeking health services for sensi- tive issues depends on how well their sensi- tive issues remain confidential. Adolescents

148 Chapter 6 Adolescent Nursing Ethics

to parents, guardians, or others involved, as appropriate. If the adolescent refuses to do so, nurses and other healthcare professionals are obligated to report certain information to state officials according to state laws. The reporting requirements vary from state to state, but re- portable threats and harm are reasonably con- sistent from state to state.

LEGAL PERSPEC TIVE: PARENTAL INVOLVEMENT IN MINORS’ ABORTIONS BY STATES IN 2018

■ 37 states require some degree of parental involvement in an adolescent’s choice to have an abortion.

■ 36 of the 37 states requiring parental involvement have an alternative process for minors seeking an abortion.

■ 21 of the 37 states require parental consent.

■ 12 of the 37 states require only parental notification, not consent.

■ 5 of the 37 states require parental consent and notification.

■ 7 states permit a minor to obtain an abortion if a grandparent or another adult relative is involved in the decision.

■ 34 states permit a minor to obtain an abortion in a medical emergency without parental consent.

■ 15 states permit a minor to obtain an abortion without parental consent in cases of abuse, assault, incest, or neglect.

Data from Guttmacher Institute (2018).

Nurses must hold to these confidentiality and limits of confidentiality standards. Even if the situation is not considered a limit of con- fidentiality, the nurse should make an effort to involve the parents or guardians if the adoles- cent is younger than age 14 years because the lines of confidentiality and consent are even more vague and unclear before that age.

Respect for Autonomy and Consent Process Adolescents younger than age 18 years can give consent for their own care in a broad range of circumstances and services. The minors who can consent are those who are older than a cer- tain age, mature, legally emancipated, married, in the armed forces, living apart from their parents, high school graduates, pregnant, or already parents themselves (University of Chi- cago, 2013). They may also refuse treatment. An adolescent’s right to consent to or refuse treatment is more frequently honored with certain types of services.

Deciding whether adolescents really have autonomous decision-making capacity is a consideration tightly linked to their personal self-directedness and characteristics, what Blustein and Moreno (1999) called moral self- government. The goal during adolescence is development of the moral self because most ad- olescents’ moral selves are not yet fully formed. Blustein and Moreno stated that adolescents have an emerging capacity, which means the moral self is evolving but it is not doing so evenly or consistently. Age and the stage of cognitive, emotional, and social development influence a person’s ability to make mature decisions. An adolescent’s capacity for decision making does not occur before age 15 years, and some experts say that adolescents should not take part in sig- nificant autonomous decision making before age 14 years (University of Chicago, 2013).

For many years, adults in the United States and most of the world have valued the right to control their medical decisions. Adolescents are no different. In most states, these decisions are left up to healthcare professionals. If a valid consent between a nurse and an adolescent takes place, the initial phase should be more of a dialogue and an educational exchange. During the consent process, the nurse’s re- sponsibility is to evaluate the adolescent’s cap- acity for understanding and appreciating the process, especially with anticipated treatments

Ethical Issues and Concerns Involving Adolescents 149

or interventions. Consider the scenario in the box Legal Perspective: Services Related to an Adolescent’s Right to Consent.

The consent process may not be just a one- time event, such as in a complex disease like cancer. Instead, when the required treatments and tests associated with the disease increase, so do the number of consents. During the initial treatment of the disease, one or both parents may be highly involved in the consent process. Later in the treatment stages, adolescents may develop considerable maturity in decision mak- ing and therefore have the capacity to consent or not consent to subsequent treatments. The ado- lescent’s level of understanding and appreciation of the content of the consent may have progres- sively increased. Over time, the adolescent can take on more, if not all, of the responsibility in the decision-making process, and dialogue and education continue throughout the treatment. During the treatment and consent phases, doc- umentation of the adolescent’s progress in de- velopment of the moral self is essential.

Adolescent Risk-Taking Behaviors, Nonmaleficence, and Beneficence There are more than 1.8 billion young peo- ple living in the world, the largest number of adolescents in history, and of these 1.8 billion young people, 89% live in developing coun- tries (United Nations Population Fund, 2016). More than 65  million young people between the ages of 10 and 24 live in the United States. Risk taking and believing “it’s not going to happen to me,” or feeling invincible are the hallmarks of adolescence, despite the high risks and intensified societal and technological pressures placed on them like no other time in history. The realities of massive global social, economic, political, and cultural changes af- fect adolescents’ development process.

Health risk behaviors are described as having a negative effect on people’s health (Lindberg, Boggess, & Williams, 2000). Adoles- cents are particularly prone to engaging in risky behaviors—sometimes multiple risky behaviors. In fact, researchers indicate that engaging in one risky behavior leads to engaging in at least one

LEGAL PERSPEC TIVE: SERVICES RELATED TO AN ADOLESCENT ’S RIGHT TO CONSENT

An adolescent’s right to consent to or refuse treatment is honored more often with these services:

■ Emergency care ■ Family planning services, such as

pregnancy care and contraceptive services ■ Diagnosis and treatment of STIs or

any other reportable infection or communicable disease

■ HIV or acquired immune deficiency syndrome (AIDS) testing and treatment

■ Treatment and counseling for alcohol and other drugs

■ Treatment for sexual assault and collection of medical evidence for sexual assault

■ Inpatient mental health services ■ Outpatient mental health services

FOCUS FOR DEBATE: ETHICAL ISSUES RELATED TO ADOLESCENT ABORTION

Kelly, age 16 years, has come to a clinic where you work as a nurse. She states that she is at least 12 weeks pregnant but has not told anyone, not even her parents or boyfriend. She is fearful of losing her boyfriend if she tells him. She wants an abortion, has cash, and does not want anyone to know about the pregnancy or the abortion. The clinic is in a state that does not require direct parental involvement but does require consent by someone of legal age.

■ Explore the ethical issues and nursing strategies surrounding this situation with Kelly.

■ Examine the trust–confidentiality–privacy issues, the consent process, autonomy, and communication.

150 Chapter 6 Adolescent Nursing Ethics

or more other risky behaviors, especially paired behaviors such as smoking cigarettes and drink- ing alcohol or smoking marijuana and engaging in risky sexual activities (Lindberg et  al., 2000; Lytle, Kelder, Perry, and Klepp, 1995).

In a literature review on adolescents and risk-taking behaviors, McKay (2003) and Cook, Dickens, and Fathalla (2003) found that most risk-taking behaviors originate so- cially and can result in injury from accidents, violence, and sexual abuse. The Centers for Disease Control and Prevention (CDC) peri- odically collects new data from the Youth Risk Behavior Surveillance System (YRBSS; CDC, 2018c). In the 2017 YRBSS, the CDC sampled 14,956 students in 144 public-funded schools,

charter schools, Catholic, and nonpublic schools in at least one grade or more of grades 9 to 12 across the 50 states. The CDC sampled these students on behaviors often leading to unintentional injuries or death in adolescents. Four critical health behaviors were connected to the leading causes of death and disability among adolescents in the United States: motor vehicle crashes, other unintentional injuries, suicide, and homicide (CDC, 2018c). Refer to the box Research Note: Health Risk Ranges Reported Across the United States in Grades 9 to 12 in 2017 for two sets of adolescent statis- tics from the YRBSS in 2017: (1) general statis- tics on adolescent health risks and (2) leading causes of death for ages 10 to 24.

RESEARCH NOTE: HEALTH RISK RANGES REPORTED ACROSS THE UNITED STATES IN GRADES 9 TO 12 IN 2017

General Statistics on Ranges of Adolescent Health Risks ■ 27.4% to 55.2% ever texted or emailed while driving. ■ 30.4% to 68.0% ever drank alcohol. ■ 16.6% to 44.1% are marijuana users. ■ 0.4% to 5.5% frequently use cigarettes. ■ Nationwide, 39.5% of all students have ever engaged in sexual intercourse at least once; 28.7%

were sexually active 3 months before the survey; 9.7% ever had sexual intercourse with four or more people during their lives; and of the 28.7% currently sexually active, 53.8% used a condom during their last sexual intercourse.

■ 27.9% to 91.5% went to physical education classes on 1 or more days per week; 5.7% to 68.4% went to physical education classes on all 5 days per week.

■ 14.8% of high schoolers were obese with a body mass index (BMI) of greater than or equal to 29, and 15.6% were overweight. When asked to describe themselves, 31.5% reported they were overweight.

■ 13.8% of the 28.7% currently sexually active reported they or their partner had not used any method to prevent pregnancy.

Risky Behaviors Leading to Major Causes of Death in Persons Aged 10 to 24 Years

■ Motor vehicle injuries ■ Unintentional injuries ■ Suicide (12 months before the survey, 7.4% had actually attempted suicide one or more times;

17.2% had seriously considered attempting suicide; 13.6% of students nationwide had made a plan about how they would attempt suicide.)

■ Homicide

Data from Centers for Disease Control and Prevention (CDC). (2018). Youth risk behavior surveillance-United States, 2017. Morbidity and Mortality Weekly Report, 67(8), 1–120. Retrieved from https://www.cdc.gov/mmwr/volumes/67/ss/pdfs/ss6708a1-H.pdf

Ethical Issues and Concerns Involving Adolescents 151

ETHICAL REFLEC TION: CHECK YOURSELF ON MINDFULNESS AND EFFEC TIVE LISTENING SKILLS

■ Do I pay attention by making eye contact and concentrating on the communication exchange?

■ Am I nonjudgmental by showing a genuine interest in what the person is saying?

■ Do I provide nonverbal cues of understanding by hearing the person’s comments and acknowledging with nods, smiles, or other expressions?

■ Do I reflect by summarizing the person’s thoughts and clarifying the meaning of the message?

ETHICAL REFLEC TION: PLANNING A PREVENTION EDUCATION PROGRAM

Answer these basic questions:

1. How much information is too much information?

2. When and at what age will the information be presented?

3. What types of information are appropriate?

4. Where and how should the information be presented to be effective?

Prevention Education for Adolescent Risk-Taking Behaviors Mindfulness and effective listening are import- ant, but being the giver of communication— how, where, and to what extent—is a critical eth- ical concern for adolescent relationships of all kinds, especially in professional nurse–adolescent relationships. Beneficence and nonmaleficence are ethical principles of concern when planning and implementing prevention education and health risk message programs involving this age group. Health risk messages, or fear appeals, are persuasive messages that arouse adolescents by “outlining the negative consequences that occur if a certain action is not taken” (Witte, Meyer, & Martell, 2001, p. 2). Sensationalists, po- litical campaign personnel, and religious leaders tend to use fear appeals, as do health educators, nurses, physicians, and professionals in other re- lated disciplines if they suspect health issues are associated with a risky behavior. If fear appeals are effective, the target population will be more likely to make healthy choices and practice safe behaviors.

Fear appeals also can be used incorrectly and can do more harm than good. Giving health risk messages without the integration of a theory can be time consuming and frag- mented. A theory provides “an explanation of how two or more variables work together to produce a certain outcome(s)” (Witte et al., 2001, p. 3). A theoretical framework guides the development of a health risk message, which eliminates the guesswork and shortens the duration of the developmental phase. Many current education programs for adolescents are theory-based prevention programs with an inclusion of health risk messages. When nurses provide prevention programs, they have an ethical obligation to focus not only on promoting good but also on doing no harm—a beneficent, nonmaleficent approach. Offering theory-based education programs with health risk messages requires nurses to incorporate a goal of teaching skills that are necessary to

make healthy choices and practice healthy be- haviors. This aim is consistent with a benefi- cent, nonmaleficent approach.

An example of a prevention program of more intensity is the harm-reduction program. Most adolescents will never need the type of strategies used in a harm-reduction program (Patton et  al., 2016). In this type of program, nurses teach the adolescents or adults, who engage in certain high-risk behaviors, to live

152 Chapter 6 Adolescent Nursing Ethics

safely. An extreme example of harm reduction is the needle exchange program for people of any age who are addicted to intravenous or other needle-requiring drugs. Adolescents have some or many unmet needs because of inexperience and lack of knowledge with risky behaviors, how to access health care, and confidentiality.

Teen (BART) training manual, which is an eight-session curriculum based on two theo- retical frameworks: (1) Bandura’s (1977) social cognitive and self-efficacy theory and (2) Fisher and Fisher’s (1992) information– motivation– behavioral (IMB) skills model. Later, Butts and Hartman (2002) conducted research us- ing BART. For many years, and sometimes still today, the BART behavioral interven- tion program has been a popular evidence- based program among health educators.

Nurses who are involved in any structured prevention program aimed at behavioral inter- vention need to use a theory-based curriculum and evaluate the program early in the planning phase. Educators should consider answering the questions in the box Ethical Reflection: Ethical Questions for School Nurses to Answer in Planning a Prevention Education Program in the planning phase of a program.

Nurses who give information to adoles- cents may potentially harm them if they choose a wrong or inappropriate prevention program. This situation poses a critical ethical dilemma for nurses when they must choose among the many standardized and accepted programs that are available for adolescents. For example, nurses sometimes need to choose between teaching sexual abstinence and the use of safe sexual practices, or they could be asked to fo- cus a program on religious beliefs. Choosing an age- or content-inappropriate program for a particular group or easily misinterpreted in- formation could result in misled adolescents, or adolescents may perceive the health risk messages differently from the way the educa- tor intended. Blunders could be critical to how adolescents will react to the information.

Many adolescent programs continue in the United States, but gaps still exist in pre- vention education programs. The gaps could be symptoms of problems related to manag- ing and implementing prevention programs, such as controversial or inadequate content, complacency in creating and instituting pro- grams, and not enough programs in place. For example, lack of teacher training, not enough

RESEARCH NOTE: APPROACHES FOR MEETING THE EDUCATIONAL NEEDS OF TEENS ENGAGING IN RISKY BEHAVIORS

Current approaches in adolescent health include “intersectoral and multi-component” considerations (Patton et al., 2016, p. 4). Among these these approaches include a mix of media, community, online, structured, and school-based programs to meet a complexity of issues experienced by adolescents.

Prominent differences in adolescent health between regions and countries and within different adolescent groups have resulted in global changes that require a range of multifaceted approaches. The complexity of providing intersectoral and multicomponent approaches derives from gender orientation; lesbian, gay, bisexual, and transgender (LGBT ) youth; differentiated minority groups; and other groups. Other complicating issues are adolescents

■ living with disabilities, ■ living homeless, ■ living in poverty, and ■ housed in juvenile detention centers.

Another example of a structured preven- tion program is a behavioral intervention pro- gram with theory-based health risk messages. An older effective prevention program was de- veloped by St. Lawrence in 1994. She and her re- search team continued the development of this program (St. Lawrence et al., 1995). The preven- tion program is titled Becoming a Responsible

Ethical Issues and Concerns Involving Adolescents 153

ETHICAL REFLEC TION: ETHICAL QUESTIONS FOR SCHOOL NURSES TO ANSWER IN PLANNING A PREVENTION EDUCATION PROGRAM

1. If a school nurse is planning a prevention education program for rural or urban middle-school students on the issues of alcohol, other drugs, and sex, what are some considerations before or during the planning phase of the program?

2. What is the most effective prevention program that can be used?

3. What ethical considerations would be incorporated into program planning?

4. What message do adolescents need to hear?

5. What type of relationship should be established with the students who are receiving the education?

material resources, inconsistent use of lesson plans, and failure to match lesson plans with the appropriate age are factors with significant negative ramifications for adolescent preven- tion programs in the nation.

Sometimes, school nurses are the ones who plan and implement education programs, so they need to know the objectives and content and anticipate the message to be heard by ad- olescents who participate in the program. Ad- olescents will usually assume the message they hear is correct because the information came from professional school nurses. When adoles- cents incorporate misinterpreted information into their viewpoints and behaviors, they place themselves at a higher risk of contracting STIs or HIV, developing a drug dependence, experi- encing alcohol- or other drug-related injuries, or developing suicidal ideation.

Abstinence-Only Programs or Compre- hensive Sex Education Programs. Other than through fundamental religious teachings, sexual education was rarely taught in formal

institutions in the United States before the HIV and AIDS epidemic began in the 1980s. In the 1990s and early 2000s, examining how abstinence-only programs measure up to comprehensive sexual education programs was a popular issue. Many states sought and received federal funding for abstinence-only prevention education programs during that time, but by 2010, 25 states did not seek federal funding for abstinence-only programs (Wiley, 2012). Before 2010, there was a much stronger religious and political focus on, and plenty of funding for, teaching sexual abstinence in schools, homes, and churches than in previous years, especially since the sexual revolution movement of the 1960s. In the past decade, the political landscape has shifted from a focus on sexual abstinence to comprehensive sexual education programs.

Although sexual abstinence is defined as no participation in any genital contact, ad- olescents often do not have a clear meaning of sexual abstinence. Traditionally, adolescents have equated “having sex” with intercourse alone. Young people have sought more creative ways, other than coital sex, to express sexual intimacy (Remez, 2000). Meanwhile, parents, educators, and others who teach sexual absti- nence continue to say “just say no to sex,” “don’t have sex before marriage,” or “delay the onset of sex.” What do these statements mean exactly?

Could abstinence be defined today as a person being able to engage in any type of sexual activity as long as the couple or group is protected with latex and does not exchange bodily fluids? Without a clear definition, ed- ucators, parents, and other adults have only vague communication between themselves and adolescents about the meaning of sex- ual abstinence. What adolescents perceive as the definition of sexual abstinence and what adults are trying to teach as sexual abstinence will likely differ. Ethically, vagueness itself can be harmful, not beneficial, because informa- tion may be misperceived. As a result, ado- lescents are left to their own interpretations, which leads to unprotected sex with conse- quences of unwanted pregnancy and HIV or STIs. Abstinence-only programs continue to

154 Chapter 6 Adolescent Nursing Ethics

decline as funding dwindles. Instead, funding is focused on comprehensive sexual education programs because research is beginning to support their effectiveness.

The issue of which type of program works best is of great concern for nurses who work with adolescents. Inconsistency exists across all the programs. Ethically, nurses need to think about the potential for harm to adoles- cents as a result of the type of sexual education program they choose. Nurses need to evalu- ate the program early in the planning process by using the guidelines already mentioned in this chapter. It is important for nurses to think about the ways in which adolescents may per- ceive, interpret, or put into practice the con- tent being presented to them.

When nurses can focus effectively on the adolescents who are receiving the message, they need to clarify the message; try to focus on what they are really saying to adolescents; and, most of all, attempt to clarify and anticipate the mes- sage that adolescents are actually hearing. The overall ethical concern about sexual education is complex, but generally nurses must evalu- ate at what point along the sexual abstinence– comprehensive sex education continuum the information conveyed becomes unethical, non- beneficial, or even harmful. Adolescents need sexual education more than ever today.

If a nurse takes the time to focus on the audience and the content of the message, ado- lescents will hopefully realize that nurses care for them and respect their values and beliefs. As the nurse provides well-defined content and becomes an effective listener, a reciprocal trusting and respectful relationship is more likely to develop.

Pregnancy and Abortion Related to Unprotected Sex Adolescents continue to have unprotected sex. Leaders of community organizations, schools, and churches continue their efforts to teach abstinence-only programs despite many ado- lescents breaking their vows when they make a choice to have sexual intercourse. Abortion

rates among adolescents peaked in the 1970s and 1980s and then steadily declined to his- torical lows in 2013. Of the 750,000 teen preg- nancies in the United States in 2010, more than half were unintended. The rate of abor- tions declined in 2014 to 12.1 of every 1,000 women ages 15 to 44 (CDC, 2018a). Rea- sons for the decline in teen abortions include greater teen access to contraceptive services, achieving higher levels of education, and past comprehensive sexual education programs in schools. These declining rates indicate that adolescents are slowly learning negotiation skills and effective contraceptive practices.

HIV and Other Sexually Transmitted Infections Related to Unprotected Sex By the late teen years, 7 of 10 adolescents have had sexual intercourse. Many adults in the United States would like to see a comprehensive sexual education program implemented with curricula on healthy choices, abstinence, and strategies to be safe. As pregnancy rates have slowly declined over the past decade for ado- lescents, STIs have remained high and of deep concern to public health officials. From 2012 to 2016, the rate of reported STIs for both genders in the United States increased. In fact, one of every four sexually active girls ages 15 to 24 had an STI (CDC, 2017a). In a January 2004 poll of 1,759 people in the United States, only 15% of adults thought school officials should teach abstinence only and not provide information about contraception (Princeton Survey Re- search Association, as cited in Bowman, 2004). Prevention is critical, but prevention must go beyond education. Adolescents need to be able to access healthcare services with a provision for family planning and STI treatment on a reg- ular basis because many STIs are treatable and curable. Cervical cancer may follow if adoles- cents are not treated properly for STIs.

The CDC’s (2018b) recommendations for lowering the risk of partners contracting HIV and other STIs include not exchanging bodily fluids, not coming into contact with blood, and

Ethical Issues and Concerns Involving Adolescents 155

using latex protection for sexual behaviors in- volving exchange of bodily fluids. Adolescents are at risk when they have unprotected sexual relations because of body fluid (and blood) ex- posures. Some ways to prevent HIV include making a choice not to have sex (abstinence), limiting sexual partners, never sharing needles, and using condoms the right way every time.

The world adopted a declaration to end AIDS (Joint United Nations Programme on HIV/AIDS [UNAIDS], 2017). In many coun- tries, HIV statistics are stabilizing or showing a slight decline because HIV prevention pro- grams are working. In all countries, particu- larly in many developing countries, people acquiring HIV and other STIs remains a top concern. AIDS-related illnesses are the leading cause of death worldwide within the reproduc- tive category (ages 15 to 49) worldwide and the second leading cause of death for ages 15 to 24 in Africa.

Alcohol and Other Drug Abuse Related to Adolescents Adolescent alcohol and other drug preven- tion programs are available across the United States, and some of these programs tend to be effective. However, among adolescents in grades 8, 10, and 12 during 2013, alcohol, tobacco, and prescription drugs continued to be the most commonly abused substances (National Institute on Drug Abuse, 2017). For grade 12, alcohol, tobacco, marijuana, and pre- scription drug use rates the highest. In 2017, the CDC (2018a) reported that high school students continue to engage in too many risky behaviors leading to STIs, HIV, injury, addic- tion, depression, chronic disease, and suicide. Alcohol and other drug use among teens con- tinues to be a life-threatening problem.

For preteens in grade 8, alcohol and other drug use also remains a critical problem. The most popular drugs are alcohol, tobacco, mar- ijuana, and illicit drugs. From 2002 to 2006, inhalant chemical use was also a common practice among preteens and adolescents; it

was reported that 593,000 preteens and teens, ages 12 to 17, used inhalants for the first time (Drug-Free World Foundation, n.d.). Correla- tions exist among drug use and conduct disor- der, depression, and suicidal behavior.

ETHICAL REFLEC TION: OBSERVABLE SIGNS AND SUBJEC TIVE COMMENTS OF ADOLESCENT SUICIDE

Observable signs of adolescent suicide are as follows:

■ Change in eating and sleeping habits ■ Withdrawal from friends, family, and

regular activities ■ Violent actions, rebellious behavior, or

running away ■ Drug and alcohol use ■ Unusual neglect of personal appearance ■ Marked personality change ■ Persistent boredom, difficulty concentrating,

or a decline in the quality of schoolwork ■ Frequent complaints about physical

symptoms, often related to emotions, such as stomachaches, headaches, fatigue, and others

■ Loss of interest in pleasurable activities ■ Not tolerating praise or rewards ■ Giving away favorite possessions or

throwing away valuable belongings ■ Becoming suddenly cheerful after a period

of depression ■ Showing signs of psychosis

Subjective comments of adolescent suicide are as follows:

■ Complaints of being a bad person or feeling rotten inside

■ Verbal hints with comments such as “I won’t be a problem for you much longer”

■ Comments such as “I want to kill myself ” or “I’m going to commit suicide”

Modified from from American Academy of Child and Adolescent Psychiatry. (2017). Suicide in children and teens. Retrieved from https://www.aacap.org/AACAP/Families_and_Youth/Facts _for_Families/FFF-Guide/Teen-Suicide-010.aspx. Reprinted with the permission from the American Academy of Child and Adolescent Psychiatry ©2017. All Rights Reserved.

156 Chapter 6 Adolescent Nursing Ethics

ETHICAL REFLEC TION: CASE SCENARIO—WHAT ARE NURSE NAN’S ETHICAL OBLIGATIONS IN THE CARE OF ERIC?

Nan, a school nurse, notices that Eric, a 15-year-old student, keeps to himself and never talks to anyone. Lately, his behavior has become extreme; he does not eat in the cafeteria with other students, keeps his head down at all times, and never makes eye contact with anyone. He has completely withdrawn from any social interaction at school. The other teens notice Eric’s strange behavior and begin making fun of him, and then they begin bullying him. These actions just seem to make him go deeper into withdrawal. Nan took note of his depressive signs and searched for current literature, which indicated that Eric is at risk for committing suicide. Then, Nan analyzed her ethical obligations as a school nurse as they pertain to Eric. What are Nan’s ethical obligations to Eric?

Adolescents with a family history of sub- stance or physical abuse are at high risk for developing substance abuse problems and an alcohol use disorder, which indicates that the use of alcohol has become a person’s nor- mal function of living or has progressed to the point of causing physical, mental, social, or personal adverse effects. Such persons may also be prone to depression, low self-esteem, feeling like outcasts, or not fitting in with their peers. An ethical issue that is associated with the use and abuse of alcohol and other drugs is the dilemma of balancing adolescents’ rights to autonomy, privacy, and freedom to deter- mine their own actions against the harmful ef- fects of irresponsible use of alcohol and other drugs. Dryfoos and Barkin (2006) delineated some early predictors of alcohol and other drug abuse and protectors.

Even though alcohol and other drugs are harmful when abused or misused, a small glass of red wine is reported to protect the heart against disease (Gullotta et  al., 2000). Messages like this can be quite confusing to adolescents. Another message that could be misleading is the use of marijuana. Thirty states in the United States have legalized or decriminalized medical use of marijuana as of July 2018. Of these states, nine have legal- ized marijuana for personal and recreational use (“Marijuana laws in the United States,” 2018). Sixteen states allow the use of canna- bis oil or cannabidiol (CBD) for medical pur- poses. Only four states have no access law to marijuana. Adolescents receive conflicting information on marijuana and alcohol use. For example, advertisers often show groups of attractive young people socializing and drink- ing beer. Many companies intend to convey a subtle message that drinking beer makes one more attractive and popular.

A federal government prevention cam- paign called the Underage Drinking Research Initiative was spearheaded by the National Institute on Alcohol Abuse and Alcoholism (2013). The U.S. surgeon general hopes this program will help reduce alcohol consumption by underage persons. Many people are con- cerned that the campaign could backfire and cause teens to hide and drink, or go under- ground to drink, especially if parents are asked to not allow their underage children to drink (“Underage Drinking Debate,” 2006). Under- ground, or secret drinking, can lead to major unintended consequences. Another concern is the overmoralizing of the issue. Many profes- sionals believe moralizing should not be part of the message. Underage drinking, which is drinking by anyone younger than age 21 years, is an illegal act because the legal drinking age in the United States is 21 years old. The other issue is parenting—knowing what to teach and what not to teach.

The consensus among researchers is that parents should teach their children how to act responsibly and what is legal and illegal

Ethical Issues and Concerns Involving Adolescents 157

RESEARCH NOTE: EARLY ALCOHOL AND OTHER DRUG ABUSE PREDIC TORS AND PROTEC TORS

Predictors of drug abuse:

■ Aggressiveness in early childhood ■ Rebelliousness ■ Unconventionality ■ High-risk friends ■ Parents who have problems or use drugs

Predictors of alcohol abuse:

■ Alcoholic parent or parents ■ Restless, impulsive, aggressive behavior in

early childhood ■ Conduct disorder ■ Depression ■ Peers who drink ■ Lack of parental monitoring, support, and

supervision

Protectors against drug and alcohol abuse:

■ Parents who talk to their teens, set expectations, and enforce consequences

■ Close family ties ■ Adult role models ■ Participation in religious and other

activities ■ Positive attitudes toward school ■ School achievement

Data from Jessor, R., Van Den Bos, J., Vanderryn, J., Costa, F., and Turbin, M. (1995). Protective factors in adolescent problem behavior: Moderator effects and developmental change. Developmental Psychology, 31, 923–933.

RESEARCH NOTE: UNDERAGE DRINKING RESEARCH FINDINGS

■ Research indicates that alcohol use during the teenage years could interfere with normal adolescent brain development and increase the risk of developing alcohol use disorder. In fact, underage drinking contributes to a range of acute consequences, including injuries, sexual assaults, and deaths.

■ Almost 5,000 adolescents die each year from underage drinking. ■ In 2012, approximately 855,000 adolescents, aged 12 to 17 years, had an alcohol use disorder, and

of those, 76,000 adolescents received treatment for an alcohol use disorder.

Data from National Institute on Alcohol Abuse and Alcoholism. (2017a). Alcohol facts and statistics. Retrieved from https://pubs.niaaa.nih.gov /publications/AlcoholFacts&Stats/AlcoholFacts&Stats.pdf

(National Institute on Alcohol Abuse, 2017b). Adolescents listen to their parents regarding drinking alcohol and smoking. Teens and young adults believe their parents should have a say in their use of alcohol. However, research has illustrated that when adolescents have per- missive, authoritarian, or neglectful parents, they will be less likely to allow their parents to have a voice in whether they choose to drink alcohol. Although genetics influence the de- velopment of drinking, permissive parental attitudes toward drinking can lead to adoles- cents drinking heavier.

School nurses need to take part in educat- ing teens and parents about underage drinking. Striking a balance between a nurse’s confiden- tiality regarding information learned and pro- tecting the adolescent is a complex situation. The trust between a nurse and an adolescent should not be broken unless there is evidence of impending physical harm, which is a limit of confidentiality.

Eating Disorders Related to Adolescents Physical appearance is one of the most import- ant aspects of self-image for all adolescents, but this is especially true for girls. Girls dream and wish for beautiful, lean, and trim bodies, and many of them tend to not be satisfied with their own bodies. In the past few decades, ad- olescent boys have begun developing eating

158 Chapter 6 Adolescent Nursing Ethics

disorders; of the total number of people with eating disorders, one in four is a male (Harris & Cumella, 2006; National Eating Disorders As- sociation, 2018c).

For many adolescents, obesity, which means having too much body fat or weight, has become a disturbing problem. Adolescents who are obese tend to be very self-conscious of how they look to others, which may lead to a lifelong cycle of anxiety, depression, and over- eating. Chronic overeating and obesity lead to severe health problems, such as heart disease, hypertension, type 2 diabetes, and respiratory problems.

As many as 50% to 75% of adolescent girls in the United States continually diet, although only 16% are actually overweight (Whitlock, Williams, Gold, Smith, & Shipman, 2005). Twice as many girls compared to boys experi- ence an eating disorder in their lifetime, but most people never report their eating disor- der. By age 6 years, girls begin to express their worries about their own weight or size, and by grade 3, almost half of girls (42%) view their weight as an enormous issue (National Eating Disorders Association, 2018b). More than half of adolescent girls and one-third of adolescent boys engage in unhealthy behaviors to lose weight, such as skipping meals, fasting, smok- ing cigarettes, vomiting, and taking laxatives. Common eating disorders, which lead to ser- ious medical complications and even death if not treated correctly or at all, are illustrated in the box Research Note: Types of Eating Disorders.

The tragedy is that most adolescents who experience these disorders are skilled at hiding them until medical problems become severe. Nurses who work closely with adolescents need to be highly skilled in assessing and mon- itoring adolescents who are at risk for these eating disorders. Other than weight loss, some signs that can alert nurses to these disorders include an obsessive need to be perfect or to be a high achiever; low self-esteem; open displays of intense guilt; signs of depression; or signs of fixation on food, calories, fat grams, or weight.

RESEARCH NOTE: T YPES OF EATING DISORDERS

■ Anorexia nervosa: An eating disorder that causes people to obsess about their weight and the food they eat; therefore, they lose large amounts of weight.

■ Bulimia nervosa: An eating disorder that causes people either to excessively binge and purge by vomiting and taking laxatives or not to purge but to engage in other unsafe methods for losing weight, such as excessive exercise or fasting.

■ Binge eating disorder: An eating disorder that causes people to binge eat large amounts of food, sometimes in secret.

■ Eating disorder not otherwise specified (EDNOS): An eating disorder that a care provider has not yet specified.

Data from National Eating Disorders Association. (2018a). Statistics and research on eating disorders. Retrieved from https://www .nationaleatingdisorders.org/statistics-research-eating-disorders

RESEARCH NOTE: WARNING SIGNS OF EATING DISORDERS—ANOREXIA NERVOSA AND BULIMIA NERVOSA

■ Sudden and dramatic weight loss ■ Relentless exercising ■ Ritual eating, such as tiny bites and

rearranging food on the plate ■ Obsession with counting calories ■ High achiever or a need to be perfect ■ Frequent weighing on scales ■ Common use of laxatives, diuretics, and

appetite suppressants ■ Binge eating or purging ■ Avoiding meals altogether or often eating

alone ■ Self-image of being and looking fat even

though weight loss continues ■ Interpersonal relationship problems ■ Sense of helplessness often curbed with

controlling eating

Data from Harris, M., and Cumella, E. J. (2006). Eating disorders across the life span. Journal of Psychosocial Nursing, 44(4), 20–26.

Ethical Issues and Concerns Involving Adolescents 159

A critical message regarding child and adolescent eating disorders, such as anorexia nervosa or bulimia nervosa, is the fashion in- dustry’s blatant promotion of super-thin mod- els, conveying a message that one must be thin to be beautiful. Ana is a popular abbreviation for anorexia nervosa, and Mia is a popular ab- breviation for bulimia nervosa. Sometimes, ad- olescents personify Ana or Mia as a girl’s name. Pro Ana and pro Mia websites support and encourage anorexic and bulimic behaviors, al- though some sites claim they do not. Websites such as Ana Boot Camp, Thin Intentions For- ever, My Pro Ana Forum, MissAnaMiaforum, and other sites send dangerous messages for teen girls and, sometimes, even for boys.

All these eating disorders serve as a warn- ing of the presence of severe emotional hurt- ing. In turn, if left undetected or untreated, the emotional distress may progress to more disturbing behavior, such as complete with- drawal, being friendless, expressions of anger and aggression, and self-harm. Psychotherapy is the treatment of choice, and nurses need to monitor for warning signs of all these disor- ders and talk with the adolescent and parents so the nurse can make appropriate referrals to a primary care provider and a psychotherapist.

Depression and Suicide Ideation Related to Adolescents Depression, which is a persistent feeling of sadness or loss of interest, and suicide, which is an act of slaying oneself, are sometimes as- sociated with the great emotions and drama during the age of adolescence. Depressive be- havior may be hidden in daily displays of ex- tremes. There are risk factors for adolescent suicidal ideation and attempts, many of which include family disturbances, familial tenden- cies, school bullying, cyber bullying, sexual orientation conflicts, and socioenvironmental problems.

Suicide in adolescents aged 10 to 14 years remains the third leading cause of death in that

age group. Suicide rates have continued to in- crease to 4,600 teen suicides per year, which translates to 12.6 youth suicide deaths every day (CDC, 2017b). In adolescent suicide, the top three methods are firearms, suffocation, and poisoning, respectively. Teen suicides are often linked to a history of mental health issues. Every year in the United States, approx- imately 157,000 adolescents are in emergency departments for self-inflicted injuries.

Obtaining treatment for depression is es- sential for the prevention of suicide. Nurses may be fearful of making a mistake or missing signs of changes in adolescents. If a nurse finds that an adolescent is exhibiting behaviors with signs of depression, suicidal ideation, or sui- cidal tendency, the nurse must quickly iden- tify the problem, ascertain the intention of the adolescent, and clearly explain the process of notification while offering hope and the pros- pect of a treatment plan. Suicidal tendency is a person’s having a propensity for suicidal ide- ation or to attempt suicide. Suicidal ideation is a person who has a preoccupation with sui- cide. In 80% of youth suicides, adolescents previously told someone about their suicidal ideation.

Many state educational systems have ini- tiated a program called Gatekeepers to spot suicidal youth. In Virginia, for instance, Gate- keepers trainers first educated school nurse coordinators to be trainers, and then those school nurses trainers provide training to other school nurses. Gatekeepers learn to rec- ognize risky behaviors of suicidal ideation.

Sexual Abuse Related to Adolescents According to Banks (1999), sexual abuse is unwanted sexual activity by one person on an- other, with perpetrators using force or making threats surrounded by apprehension and fear. Hundreds of thousands of minors are physic- ally or sexually abused each year, most of the time within the family. Sexual abuse, however,

160 Chapter 6 Adolescent Nursing Ethics

occurs outside the home as well. All states have clear laws, policies, and guidelines for child protection from abuse. Many adolescents will keep quiet about being sexually abused, mainly because of fear that no one will believe them or fear of the abuser (Reilly & Williams, 2015). Sexual abusers persuade their abused adolescents into believing they are at fault.

Dating violence has come to the fore- front in the past couple of decades, though it has always been a problem. Just as adults have and must solve romantic conflicts, so do ado- lescents. Middle to late adolescents are more apt than younger adolescents to be in a rela- tionship involving violence related to anger, jealousy, emotional hurting, one partner’s be- havior, and one person trying to gain control over the other one (Wolfe, Jaffe, & Crooks, 2006). Males and females have communicated jealousy as the main reason for aggression in a dating relationship. Other types of violence and abuse are evident within the adolescent popu- lation, such as gang violence, baiting violence, homophobic violence, bullying, harassment, and rape. Nurses are responsible for critical event changes encountered during discussions with adolescents. Sexual abuse or other abuses fall under the limits of confidentiality. Nurses who work with adolescents must report any encountered cases to the proper officials or healthcare professionals. For example, a school nurse would report abuse or violence to the principal, or a nurse in an emergency depart- ment would report sexual abuse to a physician, mental health worker, or social worker; subse- quently, they would report the incident to law enforcement. Before explaining the severity of the situation to the adolescent, nurses should make every effort to help adolescents express their own feelings and reactions about the situ- ation. The most effective programs for preven- tion of risky behaviors, including violence, are those in which the content is focused on the risk factors associated with the problem area. Prevention programs must be multifaceted to be successful. After nurses provide prevention

education, the focus shifts to educating adoles- cents about strategies to provide protection in interpersonal relationships and about conflict resolution and decision-making skills. Inter- personal relationship skills are the focus of vi- olence prevention programs.

Facing Death Losing a Loved One. Losing a loved one is a catastrophic tragedy for an adolescent. Healing strategies include simple activities for the nurse, such as being present, conducting effective listening, and allowing adolescents to express themselves as long as they need to. Some adolescents do not want to disclose information about their feelings of losing someone, and they need to be alone. Many adolescents turn to prayer, hope, and a belief in absoluteness or a higher being. Some adolescents heal through self-talk, memories, and dreams. It is a difficult thing for an adolescent to lose a parent. For instance, one boy, age 16, expressed his thoughts about the memory of his mother 3 years after her death (Markowitz & McPhee, 2002). He was only 13 years old when his mother died.

Although people can expect death at some point in life, most of the time people are not prepared for it, especially adolescents. In 2000, more than 20,000 school-aged children or teens, ranging in age from 5 to 18 years, died in the United States (Lazenby, 2006). When a student dies, often the teacher and the school nurse will hold off on their grief and focus on the chil- dren left behind in the school. Lazenby (2006) conducted qualitative research to explore how teachers deal with the death of a student. When the researchers interviewed teachers about their perception of received support, one of the participants stated, “They never acknowl- edged to us [teachers] that maybe we needed to do something too and we were not allowed time to sit down and gather all our thoughts or listen to the counselors” (p. 56).

Adolescents are often encouraged to be strong, which sometimes leads to a lack of

Ethical Issues and Concerns Involving Adolescents 161

support for them (Wolfelt, 2016). However, if they have adequate support and are allowed to grieve appropriately, in most cases adolescents will heal without permanent scarring. When death is unexpected, such as in violence or an accident, screams and loud bursts of “Oh my God, why?” and “No!” from adolescents are of- ten voiced. The death of a fellow student may shock others to a state of numbness and dis- belief. When adolescents unexpectedly or ex- pectedly lose someone they love, be it a friend or family member, how do they say goodbye, progress through the hurting and pain, and move on?

Adolescents realize how final and ir- reversible death is. When grieving has not pro- gressed appropriately, however, dysfunctional grieving may occur. It is normal for adoles- cents to live in the present and often not think in terms of consequences. Grief is a complex process for anyone, but especially for adoles- cents (Wolfelt, 2016). During the grieving pro- cess, they may take more risks than usual and harm themselves. They may even seek poten- tially life-threatening thrills as a distraction.

Ethically, the nurse or school nurse must try to promote beneficence and nonmaleficence by helping adolescents through the stages of grief when they lose a loved one. If a long-term nurse–adolescent relationship exists, the nurse must try to help the adolescent overcome bar- riers to development tasks. Nurses and teachers need to be aware of dysfunctional grieving signs other than adolescents taking abnormal risks, such as the following: (1) symptoms of chronic depression, sleeping problems, and low self- esteem issues; (2) low academic performance or indifference to school-related activities; and (3) relationship problems with family members and old friends. School nurses are in an ideal situation to provide support to grieving adoles- cents and to educate teachers on how to cope with death and dying in school settings. Teach- ers have reported a deficit of knowledge and know-how when working with adolescents who are trying to cope with death and dying of their peers and family members (Lazenby, 2006).

Adolescents Facing Their Own Deaths. Adolescents who are facing their own deaths may have a terminal illness. In this case, they also may take life-threatening risks to impress their peers or others. Stillion and Papadatou (2002) poignantly stated: “Terminally-ill young people find themselves struggling with major issues of identity in the face of a foreclosed future” (p. 302). They ask questions such as “Who am I now?,” “Who was I?,” “Who would I like to become?,” “Who will I be?,” and “How will I be remembered by my friends?” (p. 303). The stages of grief experienced by adolescents when they know they are dying are different than when an adolescent is grieving for another person. When people know they are dying, the five stages of grief are (1) denial, (2) anger, (3) bargaining, (4) depression, and (5) acceptance (Kübler-Ross, 1970).

While struggling with whether to engage in intimate relationships and searching for purpose and meaning to their time-limited lives, adolescents with a terminal illness may live almost aimlessly from day to day. They may fear they will hurt others if they die. “They [adolescents] must learn to live in two worlds—the medical world with the threat of painful treatment, relapse, and death; and the normal world of home, school, and commun- ity, with all the challenges that healthy children face” (Stillion & Papadatou, 2002, p. 303).

The central ethical principles involved in this type of nurse–adolescent relationship are beneficence, nonmaleficence, and auton- omy. The five grief stages people experience when they know they are dying are at work here as well, and nurses who are involved with dying adolescents need to first explain the stages to the adolescent. Then, nurses and family members need to be alert to potential problems. Extreme behaviors and risk taking are signs alerting nurses and family members to take measures to prevent harm (nonma- leficence). Benefiting or doing good for ter- minally ill adolescents includes maintaining or improving their quality of life as much as possible. Ways to improve quality of life are

162 Chapter 6 Adolescent Nursing Ethics

to allow expressions of their fears and con- cerns, be sensitive to meeting cultural and spiritual needs, have compassion and show benevolence (kindness), and remember they experience most of the same challenges that healthy adolescents experience. Nurses must encourage sick adolescents to engage in au- tonomous decision making, as appropriate, as they progress through these developmental challenges.

▸ Nursing Care of Adolescents

The discussion in this chapter illustrated ethical management of adolescents con- cerning consent, confidentiality, prevention, and illness. Consistently practicing ethical nursing competencies is important in nurse– adolescent relationships. These competencies include moral integrity (honesty, truthfulness and truthtelling, benevolence, wisdom, and moral courage), communication (mindfulness and effective listening), and concern (advo- cacy, power, and culturally sensitive care) (see Chapter 3).

The ANA Code of Ethics for Nurses with Interpretive Statements (2015) contains essen- tial aspects of moral integrity for nurses (Pro- visions 3.1 and 5.4), which include (1) duty to maintain confidentiality but sometimes with limits of confidentiality and (2) a right and duty to act in accordance with personal and professional values with compromise on a very limited basis. Nurses who base their practice on ethical competencies are more successful in developing respectful nurse–ad- olescent relationships. Adolescents need more of a nurturing relationship with nurses, which necessitates the use of qualities beyond the ethical competencies, including trustworthi- ness, genuineness, compassion, honesty (an identified ethical competency), and spiritu- ality. This section illustrates those additional nurturing qualities.

Trustworthiness Trustworthiness, as previously defined, means that nurses are dependable and authentic be- cause they take responsibility for their own be- havior and commit to their obligations (Gullotta et  al., 2000). For example, a teen girl trusts a school nurse to follow through with an appoint- ment to discuss a sensitive issue, such as the possibility of her being pregnant and the choices available to her.

Genuineness Adolescents are more perceptive to how gen- uine a person is than any other population (Gullotta et  al., 2000). Genuineness is how credible or real the nurse is. For example, if the nurse puts on a facade of genuineness with an adolescent but really does not desire a genu- ine relationship, the adolescent will perceive that disingenuousness. This pretense may be more damaging to the adolescent than if the nurse admitted the desire to not have a genu- ine relationship.

Compassion Compassion means for the nurse to have an understanding of the adolescent’s suffering and a desire to take action to alleviate the suf- fering. The display of compassion is uncom- mon but is a human quality that nurses should possess. In the ANA Code of Ethics for Nurses with Interpretive Statements (2015) and the In- ternational Council of Nurses Code of Ethics for Nurses (2012), compassion and alleviation of suffering are common themes.

An example of a compassionate action by a nurse is to intervene on behalf of an adoles- cent who has a hidden hurt. A hidden hurt is a hurt that causes a great degree of mental stress, such as when family members or peers tease, make fun of, or bully a person because of a weight problem, poor grades in school, freckles, a big nose, other facial distortions, or other perceived shortcomings (University

Nursing Care of Adolescents 163

of Illinois Extension, 2018). The victimized person feels emotionally abused and belittled and, over time, a lowered sense of self-worth will occur, with a display of extremes in be- haviors, such as aggression, violence, passive- ness, or becoming withdrawn. An example of a compassionate school nurse is one who takes immediate measures to stop the aggressive be- havior and compassionately acts by attempting to establish a trusting relationship with an ad- olescent who is continuously being bullied or teased. Notifying the school counselor or the principal and talking with the adolescent’s par- ents are important considerations.

Honesty The old cliché “honesty is the best policy” has proved to be a good one for nurse relation- ships. Honesty means being forthright, truth- ful, and not deceptive. According to Gullotta and colleagues (2000), “without honesty there can be no relationship” (p. 281). Nurses should express their feelings and emotions in rela- tionships. For example, expressing sadness, dissatisfaction, pleasure, or displeasure about an adolescent’s behavior is better than trying to cover up feelings. Hiding one’s feelings can cause a barrier—and irreparable damage—in the relationship.

If nurses practice the virtues of trustwor- thiness, genuineness, compassion, and honesty in adolescent care, a healthy and respectful re- lationship between the nurse and adolescent is more likely to develop. The adolescent must see evidence of the virtues in the nurse’s prac- tice if a relationship built on trust is to develop and evolve.

Spiritual Considerations One of the most important things nurses can do to nurture the spiritual growth of youth is listen to their stories and, reciprocally, share stories with them. A spiritual emptiness exists in our society, even in the face of spirituality

as an essential part of being human. If adoles- cents believe in a higher being, or what some may call absoluteness, they usually voice com- fort in living with this belief. For adolescents, spirituality can provide a type of healthy, non- punitive socialization and acceptance. Nurses can facilitate an adolescent’s spiritual growth by remembering the little actions to aid in ad- olescents’ spirituality, such as mindfulness and effective listening, being present, or keeping commitments to them. Spirituality transcends all religious beliefs; therefore, nurses could better help teens by being familiar with differ- ent religious beliefs.

Nurses can do several things to help ad- olescents with spiritual growth. There is one caution that can be a negative or positive experi- ence, depending on the nurse’s degree of spiri- tual commitment. When nurses help promote adolescents’ spirituality, they may consciously or unconsciously begin developing their own spiritual growth. Small actions sometimes re- sult in very positive effects, such as having be- nevolence and showing compassion.

Benevolence, an ethical nursing compe- tency, is a feeling of and a proclivity for kind- ness that is experienced by many people. Being benevolent toward patients is necessary, but it requires a certain degree of willingness. Nurses need to remain mindful that their nurturing and kindness are not perceived as inappropri- ate, unethical, or illegal sexual advances.

Compassion is one of the virtues already mentioned in the Nursing Care of Adolescents section of this chapter. Nurses can promote spiritual growth by practicing compassion. See the following box for several virtues related to compassion.

Many Americans have taken a renewed interest in spirituality and prefer the term spiritual rather than religious. One reason for this interest is that most people believe spiri- tuality is at the core of human life experience. If nurses talk with adolescents and truly listen to them, spiritual growth may occur for both adolescents and nurses.

164 Chapter 6 Adolescent Nursing Ethics

ETHICAL REFLEC TION: VIRTUES RELATED TO COMPASSION

■ Forgiveness: Always being open to others’ situations and reasons for the circumstances ■ Patience and tolerance: Detaching from one’s own agenda and outcomes and waiting on and

being open to another’s agenda ■ Equanimity: A virtue that illustrates being balanced and calm. For example, with adolescents,

being engaged in a situation with a patient and working toward a patient’s well-being without an unhealthy attachment that potentially causes harm to the relationship

■ Sense of responsibility: Knowing that people are interconnected and responsibility grows from that interconnectedness

■ Sense of harmony: Remaining in contact with the reality of a situation and with others ■ Contentment: An intermittent feeling of comfort that comes to a person as a result of practicing

and following a spiritual direction

KEY POINTS

■ An adolescent’s three-phase developmental process includes early adolescence, middle adolescence, and late adolescence. Risk-taking behaviors are more prominent in middle adolescence.

■ Nurses must gain trust by relentlessly proving themselves to adolescents by being consistent, giving correct information, keeping commitments, and showing concern and caring. These strategies are tried-and-true ways to gain trust with others, especially adolescents. A trust– privacy– confidentiality dilemma emerges when the nurse is entrusted with an adolescent’s confidential health and social information. In fact, research has revealed that the likelihood of adolescents seeking health services for sensitive issues depends on how well their confidential issues will be maintained. There are limits to confidentiality when potential harm to others or self is at stake. Limits of confidentiality generally include suicidal ideation, homicidal ideation, physical abuse, sexual abuse, and other behaviors placing the adolescent at risk of physical harm.

■ If adolescents ever really have autonomous decision-making capacity for consenting to or refusing treatments, it is closely linked to their moral self-development characteristics and how self-directed they are. Information collected in a nurse–adolescent relationship must be kept private and confidential by the nurse, with the exception of limits of confidentiality.

■ Adolescent risk-taking behaviors lead to ethical issues and concerns. Some of these risk-taking behaviors include unintended pregnancy and abortion related to unprotected sex, HIV and other STIs related to unprotected sex, alcohol and other drugs, eating disorders, depression and suicidal ideation, sexual abuse, and issues in adolescents facing death of a loved one or peer or facing their own death.

■ When implementing any type of prevention education program with an emphasis on behavioral intervention for adolescents, nurses need to incorporate theory-based health risk messages along with behavioral interventions that are beneficial and not harmful.

■ Nurses are faced with the dilemma of choosing a program that is appropriate and healthy for a particular group. There are a variety of standardized and evidence-based programs for adolescents. Misleading, age- or content-inappropriate information, or information that is not based in theory can cause more harm than good and may be a contributing factor to increased risky behaviors.

(continues)

Nursing Care of Adolescents 165

■ An increasingly difficult challenge exists for nurses to provide ethical and acceptable sexual education to adolescents who are engaging in risk-taking behaviors and to ensure that the information they teach is heard as intended. Nurses need to know where along the sexual abstinence–comprehensive sexual education continuum that information becomes unethical, nonbeneficial, or even harmful.

■ Depression and suicide are sometimes related. Suicide is the third leading cause of death for adolescents aged 10 to 14 years. An average of 12.6 youth suicides occur every day. The top three methods of suicide are firearms, suffocation, and poisoning. Observable signs of adolescent suicidal ideation and the tendency for suicide include the following: change in eating and sleeping habits, withdrawal, violent behaviors, personal neglect, drug and alcohol use, boredom, physical complaints, loss of pleasure, signs of psychosis, giving away personal items, and suddenly becoming cheerful after depression.

■ Alcohol and other drug use among adolescents continues to be a life-threatening problem. Predictors of drug and alcohol abuse include aggressiveness in early years, high-risk friends, unconventional behavior, conduct problems, alcoholic parents, depression, peers who drink, and lack of parental support and supervision.

■ Because sexual abuse or other abuses fall under the limits of confidentiality, nurses must report any encountered cases to proper officials.

■ More than half of adolescent girls and one-third of adolescent boys engage in unhealthy behaviors to lose weight, such as skipping meals, fasting, smoking cigarettes, vomiting, and taking laxatives. Eating disorders, such as anorexia nervosa, bulimia nervosa, binge eating disorders, or eating disorder not otherwise unspecified (EDNOS), lead to serious medical complications and even death if not treated correctly or at all. Websites such as Ana Boot Camp, Thin Intentions Forever, My Pro Ana Forum, MissAnaMiaforum, and other sites send dangerous messages for teen girls and boys.

■ Adolescents cope differently and sometimes worse than adults. When a peer at school dies suddenly, reactions are usually widespread throughout the community and school. Shock and disbelief will emotionally paralyze adolescents. Teachers and school nurses must hold off on their grief to focus on supporting and helping the grieving adolescents. The school nurse or community nurse must try to promote beneficence and nonmaleficence by helping adolescents through the stages of grief when they try to cope with the death of a loved one.

■ Adolescents who know they will die experience the five stages of grief identified by Kübler-Ross (1970). It is likely that adolescents who are grieving for themselves or a classmate will intermittently engage in high-risk behaviors.

■ Nurses need to base their practice with adolescents on a moral framework of virtues that include trustworthiness, genuineness, compassion, and honesty. The ANA Code of Ethics for Nurses with Interpretive Statements (2015) and the International Council of Nurses Code of Ethics for Nurses (2012) emphasize moral integrity in practice. Spiritual considerations are important to adolescents in all aspects of tribulations they experience. Nurses should practice the virtues of spirituality and teach them to adolescents. • Listen to adolescents’ stories and problems. • Remember the little things nurses can do in times of stress and need. • Be compassionate. • Be forgiving and remain open to others. • Stay engaged in a situation with adolescents as needed. • Maintain a sense of responsibility. • Develop a sense of harmony. • Be content.

KEY POINTS (continued)

166 Chapter 6 Adolescent Nursing Ethics

References American Academy of Child and Adolescent Psychiatry.

(2017). Suicide in children and teens. Retrieved from https://www.aacap.org/AACAP/Families_and_Youth /Facts_for_Families/FFF-Guide/Teen-Suicide-010 .aspx

American Nurses Association. (2015). Code of ethics for nurses with interpretive statements. Silver Spring, MD: Author.

Bandura, A. (1977). Social learning theory. New York, NY: General Learning Press.

Banks, S. (1999). Ethical issues in youth work. New York, NY: Routledge.

Blustein, J., & Moreno, J. D. (1999). Valid consent to treatment and the unsupervised adolescent. In J. Blustein, C. Levine, & N. N. Dubler (Eds.), The adolescent alone: Decision making in health care in the United States (pp. 100–110). New York, NY: Cambridge University Press.

Bowman, D. H. (2004). Cover story: Abstinence-only debate heating up. Education Week, 23(22), 1–2.

Butts, J. B., & Hartman, S. (2002). Project BART: Effec- tiveness of a behavioral intervention to reduce HIV risk in adolescents. Journal of Maternal Child Nursing, 27(3), 163–169.

Centers for Disease Control and Prevention (CDC). (2017a). STDs in adolescents and young adults. Re- trieved from https://www.cdc.gov/std/stats16 /adolescents.htm

Centers for Disease Control and Prevention (CDC). (2017b). Suicide among youth. Retrieved from https:// www.cdc.gov/healthcommunication/toolstemplates /entertainmented/tips/SuicideYouth.html

Centers for Disease Control and Prevention (CDC). (2018a). Data and statistics reference links: Abortion. Retrieved from https://www.cdc.gov/reproductivehealth /data_stats/index.htm

Centers for Disease Control and Prevention (CDC). (2018b). HIV/AIDS: Prevention. Retrieved from https://www.cdc.gov/hiv/basics/prevention.html

Centers for Disease Control and Prevention (CDC). (2018c). Youth risk behavior surveillance—United States, 2017 [PDF]. Retrieved from https://www.cdc .gov/mmwr/volumes/67/ss/pdfs/ss6708a1-H.pdf

Cook, R. J., Dickens, B. M., & Fathalla, M. F. (2003). Reproductive health and human rights: Integrating medicine, ethics, and law. New York, NY: Oxford University Press/Clarendon.

DiClemente, R. J., Hansen, W. B., & Ponton, L. E. (1996). Handbook of adolescent health risk behavior. New York, NY: Plenum.

Drug-Free World Foundation. (n.d.). The truth about inhalants. Retrieved from https://www.drugfreeworld .org/drugfacts/inhalants/international-statistics.html

Dryfoos, J. G., & Barkin, C. (2006). Adolescence: Growing up in America today. New York, NY: Oxford University Press.

Erikson, E. (1963). Childhood and society (2nd ed.). New York, NY: Norton.

Fisher, J. D., & Fisher, W. A. (1992). Changing AIDS risk behavior. Psychological Bulletin, 111, 455–474.

Gullotta, T. P., Adams, G. R., & Markstrom, C. A. (2000). The adolescent experience (4th ed.). San Diego, CA: Academic.

Guttmacher Institute. (2018). Parental involvement in minors’ abortions. Retrieved from https://www.guttmacher.org /state-policy/explore/parental-involvement-minors -abortions

Harris, M., & Cumella, E. J. (2006). Eating disorders across the life span. Journal of Psychosocial Nursing, 44(4), 20–26.

International Council of Nurses. (2012). The ICN code of ethics for nurses [PDF]. Retrieved from https://www .icn.ch/sites/default/files/inline-files/2012_ICN _Codeofethicsfornurses_%20eng.pdf

Issues in providing health maintenance to adolescents: Developmental stages of adolescence. (2002). Re trieved from http://www.medscape.com/viewarticle/430530

Jessor, R., Van Den Bos, J., Vanderryn, J., Costa, F., & Turbin, M. (1995). Protective factors in adolescent problem behavior: Moderator effects and developmental change. Developmental Psychology, 31, 923–933.

Joint United Nations Programme on HIV/AIDS (UNAIDS). (2017). UNAIDS data 2017 [PDF file]. Retrieved from http://www.unaids.org/sites/default /files/media_asset/20170720_Data_book_2017_en.pdf

Kübler-Ross, E. (1970). On death and dying. New York, NY: Macmillan.

Lazenby, R. B. (2006). CE education: Teachers dealing with the death of students: A qualitative analysis. Journal of Hospice and Palliative Nursing, 8(1), 50–56.

Leffert, N., & Petersen, A. C. (1999). Adolescent develop- ment: Implications for the adolescents alone. In J. Blustein, C. Levine, & N. N. Dubler (Eds.), The adolescent alone: Decision making in health care in the United States (pp. 31–49). New York, NY: Cambridge University Press.

Lindberg, L. D., Boggess, S., & Williams, S. (2000). Multiple threats: The co-occurrence of teen health risk behaviors. Retrieved from https://www.urban.org /research/publication/multiple-threats-co-occurence -teen-health-risk-behaviors

Lytle, I. A., Kelder, S. H., Perry, C. L., & Klepp, K.-I. (1995). Covariance of adolescent health behaviors: The class of 1989 study. Health Education Research, 10, 133–146.

Marijuana laws in the United States. (2018). Retrieved from https://ballotpedia.org/Marijuana_laws_in_the _United_States

167References

Markowitz, A. J., & McPhee, S. J. (2002). Adolescent grief: “It never really hit me until it actually happened.” Journal of the American Medical Association, 288(21), 2741.

McKay, S. (2003). Adolescent risk behaviors and communi- cation research: Current directions. Journal of Language and Social Psychology, 22(1), 74–82.

National Eating Disorders Association. (2018a). Statistics and research on eating disorders. Retrieved from https://www.nationaleatingdisorders.org/statistics -research-eating-disorders

National Eating Disorders Association. (2018b). Warning signs and symptoms. Retrieved from http://www .nationaleatingdisorders.org/types-symptoms-eating -disorders

National Eating Disorders Association. (2018c). What are eating disorders? Retrieved from https://www.national eatingdisorders.org/what-are-eating-disorders

National Institute on Alcohol Abuse and Alcoholism. (2013). Underage drinking research initiative. Re- trieved from https://www.niaaa.nih.gov/underage -drinking-research-initiative

National Institute on Alcohol Abuse and Alcoholism. (2017a). Alcohol facts and statistics [PDF file]. Retrieved from https://pubs.niaaa.nih.gov/publications/Alcohol Facts&Stats/AlcoholFacts&Stats.pdf

National Institute on Alcohol Abuse and Alcoholism. (2017b). Parenting to prevent childhood alcohol use. Retrieved from https://pubs.niaaa.nih.gov /publications/adolescentflyer/adolflyer.htm

National Institute on Drug Abuse. (2017). Monitoring the future study: Trends in prevalence of various drugs. Retrieved from https://www.drugabuse.gov/trends -statistics/monitoring-future/monitoring-future -study-trends-in-prevalence-various-drugs

Patton, G. C., Sawyer, S. M., Santelli, J. S., Ross, D. A., Afifi R., Allen, N. B, . . . Viner, R. M. (2016). Our future: A Lancet commission on adolescent health and wellbeing [PDF file]. Retrieved from https://www.ncbi.nlm.nih .gov/pmc/articles/PMC5832967/pdf/nihms848847 .pdf

Reilly, M., & Williams, B. H. (2015). Teens and sexual abuse. Journal of the American Medical Association, 314(11), 1192. doi:10.1001/jama.2015.9938

Remez, L. (2000). Oral sex among adolescents: Is it sex or is it abstinence? Family Planning Perspectives, 32(6), 298–304.

Stillion, J. M., & Papadatou, D. (2002). Suffer the children: An examination of psychosocial issues in children and adolescents with terminal illness. American Behavioral Scientist, 46(2), 299–315.

St. Lawrence, J. S. (1994). Becoming a responsible teen [BART]: An HIV risk program for adolescents. Jackson, MS: Jackson State University.

St. Lawrence, J. S., Brasfield, T., Jefferson, K. W., Alleyne, E., O’Bannon, R. E., & Shirley, A. (1995). Cognitive-behavioral intervention to reduce African- American adolescents’ risk for HIV infection. Journal of Consulting and Clinical Psychology, 63(2), 221–237.

Underage drinking debate: Zero tolerance vs. teaching responsibility. (2006). The Brown University Child and Adolescent Behavior Letter, 22(3), 1, 6–7.

United Nations Population Fund. (2016). Ending the AIDS epidemic for adolescents, with adolescents: A practical guide to meaningfully engage adolescents in the AIDS response [PDF file]. Retrieved from https:// www.unfpa.org/sites/default/files/pub-pdf/210079 _UNAIDS_ENDING_THE_AIDS_FINAL_SO.pdf

University of Chicago. (2013). Approach to assessing adolescents on serious or sensitive issues and confidentiality. Retrieved from https://pedclerk. uchicago.edu/page/adolescent-confidentiality

University of Illinois Extension. (2018). Family works: Respect and hidden hurts. Retrieved from http:// urbanext.illinois.edu/familyworks/respect-03.html

Whitlock, E. P., Williams, S. B., Gold, R., Smith, P. R., & Shipman, S. A. (2005). Screening and interventions for childhood overweight: A summary of evidence for the U.S. Preventive Services Task Force. Pediatrics, 116, e125–e144.

Wiley, D. C. (2012). Using science to improve the sexual health of America’s youth. American Journal of Preventive Medicine, 42(3), 308–310.

Witte, K., Meyer, G., & Martell, D. (2001). Effective health risk messages: A step-by-step guide. Thousand Oaks, CA: Sage.

Wolfe, D. A., Jaffe, P. G., & Crooks, C. V. (2006). Adolescent risk behaviors: Why teens experiment and strategies to keep them safe. New Haven, CT: Yale University Press.

Wolfelt, A. D. (2016). Helping teenagers cope with grief. Retrieved from https://www.centerforloss.com/2016 /12/helping-teenagers-cope-grief/

168 Chapter 6 Adolescent Nursing Ethics

Adult Health Nursing Ethics Janie B. Butts

▸ Medicalization Medicalization developed from a process whereby medical professionals diagnose hu- man social problems, disorders, and syn- dromes as medical conditions. Medicalization is an occurrence that is “defined in medical

terms, described using medical language, un- derstood through the adoption of a medical framework, or ‘treated’ with a medical inter- vention” (Conrad, 2007, p. 5). Cure over care is an emphasis in the medical model. Specifically, medicalization is an illness, disorder, or dis- ease that “is not ipso facto a medical problem,

OBJECTIVES

After reading this chapter, the reader should be able to do the following:

1. Explore the concept of medicalization as it relates to the societal shift away from physician predominance of the 1970s.

2. Differentiate among the following terms: compliance, noncompliance, adherence, nonadherence, and concordance.

3. Examine cultural views with regard to self-determination, decision making, and American healthcare professionals’ values of medicalization and treatment regimens.

4. Identify ways nurses can create an ethical environment when they care for patients with chronic disease and illness.

5. Explore a utilitarian or deontology framework to justify the use of various organ procurement methods.

6. Analyze the Organ Procurement and Transplantation Network’s guiding factors for allocation of organs across the United States.

7. Define death in relation to the Uniform Determination of Death Act of 1981. 8. Explore the rationale for the two guiding moral principles of the dead donor rule. 9. Delineate the nurse’s role in terms of essential aspects of the American Nurses Association’s Code

of Ethics for Nurses with Interpretive Statements in the care of adult patients undergoing organ donation and transplantation.

169

CHAPTER 7

© Gajus/iStock/Getty Images

rather, it needs to become defined as one” for the problem to become medicalized (Conrad, 2007, p. 6).

After considerable scrutiny by society in the media and literature, the concept of med- icalization evolved over a number of years, mainly because of changes in the medical process and the healthcare system (Conrad, 2007). Some critics have expressed that medi- calization has transformed nonmedical, social, or personal problems into medical condi- tions and therefore has narrowed the range of problems of what is considered acceptable for everyday living (Illich, 1975/2010). Medical professionals classify and label the symptoms and decide who is sick. What some individuals or groups perceive as advantages to medical- ization may be perceived as disadvantages by others and vice versa. By labeling social con- ditions as medical problems, medicalization has allowed for the extension of the sick role, reduced individual blame for the problem, and led to a focus on the individual rather than the social context. On the other hand, many peo- ple have been helped by medications and treat- ment for their problems, such as alcoholism, erectile dysfunction, baldness, and many more human conditions.

Even though physicians remain the gate- keepers for medical treatment and continue to treat most disorders, three market-driven in- terests continue to expand the medicalization of society: (1) managed care; (2) biotechnol- ogy, such as genetic possibilities and pharma- ceutical treatments; and (3) consumers. The trend for labeling human social conditions as medical problems continues to increase, with no signs of waning (Conrad, 2007).

As the shift to managed care emerged, patients began to think like consumers when it comes to the medical care they receive, the providers they want, and the types of health insurance policies they can purchase. Patients as consumers became more vocal and active in their own care and demanded more services. During the same era, pharmaceutical compa- nies made enormous profits, and continue to

do so, on new drug treatments; by the 1990s, the Human Genome Project shifted society’s focus to new possibilities in diagnoses and treatments. As the 1990s ended, medical professionals’ dominance in health care and treatments di- minished somewhat, although physicians con- tinue to practice with a significant degree of control. As the market has shifted some of the traditional power away from physicians, many consumers still experience a few hegemonic practices by the medical profession in regard to their health care, and medicalization will con- tinue to be somewhat of a dominant force for a wide range of human problems.

Compliance, Adherence, and Concordance The terms compliance, adherence, and concor­ dance fall under the umbrella of medicaliza- tion. In the healthcare context, compliance refers to a patient’s written or unwritten approval of a provider’s medical treatment or a nurse’s healthcare regimen, which rep- resents the patient’s intentions of following the wishes of the provider and the suggested course of treatment. Compliance borders on coerciveness and could indicate a paternalistic approach that persuades patients to behave in a submissive manner to a prescribed regimen.

In the past decades, society realized a decline in the use of the term compliance be- cause of certain negative connotations that healthcare providers might interpret as non- compliance if they perceive a certain degree of incompetence and deviance when observ- ing nonconforming patient behaviors. Patient noncompliance remains a persistent concern, but by nurses broadening their approach to compliance, more effective inventions will result (Berg, Evangelista, & Dunbar-Jacob, 2002). In 1978, Barofsky discussed three types of patient responses to healthcare provider treatments: (1) compliance; (2) adherence; and (3) concordance, which Barofsky characterized as therapeutic alliance. These responses are still relevant today. In Barofsky’s continuum,

170 Chapter 7 Adult Health Nursing Ethics

compliance means coercion, adherence means conformity, and concordance is a therapeutic alliance between the providers of care and the patient.

Conformity is not the only way to define adherence. It became a substitute for compli- ance in an attempt to deemphasize provider control and emphasize patient choice in treat- ments and whether the patient chooses to adhere to a prescribed medical regimen. A more specific definition of adherence is the extent to which patients’ behaviors match the recommendations agreed upon by the provider or nurse and the patient (Horne, Weinman, Barber, Elliott, & Morgan, 2005).

Providers often use the term nonadher- ence to indicate an all-or-nothing patient ap- proach, meaning that patients follow either the entire treatment regimen or none of it. The extent to which a desired treatment plan or ther- apeutic result is unlikely to be realized seems to more comprehensively capture the meaning of nonadherence. Patients cite unintentional and intentional reasons for not adhering to a treat- ment plan. Unintentional reasons for nonad- herence include financial or other constraints or limitations of memory or dexterity; intentional reasons occur when the patients’ beliefs, atti- tudes, and expectations from their family’s value system differ from the treatment plan. Patient adherence or nonadherence should not be char- acterized as good or bad; instead, it should be considered high or low adherence. Nurses and physicians often find it difficult to determine the level of adherence because, during a clinical encounter, patients do not necessarily mention or clearly verbalize how well they adhere to the treatment plan.

Concordance is similar to Barofsky’s (1978) term therapeutic alliance. Concordance indicates a more shared approach, or part- nership, to the treatment plan between the provider and the patient. Important to a con- cordant agreement is a negotiation between the patient and the provider regarding the beliefs and wishes of the patient and whether, when, and how treatments will be administered and

medicines will be taken (Horne et  al., 2005). Providers have engaged in concordance more in the United Kingdom than in any other country. The practice of concordance has many advantages, but the term needs more conceptualization and understanding for its increased use in medical and nursing prac- tice. Providers who practice concordance have encountered frequent issues when it comes to discriminating concordance from compliance and adherence.

Valuing Self-Determination in a Medicalized Environment Within the healthcare system today, doing more work with fewer resources is a concern when providers plan strategies to improve a person’s health. Promoting healthy behaviors and prescribing treatment regimens yet trying to respect one’s rights to self-determination is a complex situation. One ethical question that needs to be answered is how far providers of care should go in terms of respecting the au- tonomy of patients when some of the patients’ behaviors burden society with enormous costs, both in terms of money and other resources. If providers and nurses are to practice ethically, they need to avoid paternalistic and coercive behaviors when educating patients on strate- gies to promote healthy behaviors (Berg et al., 2002). Self-determination and decision making are critical elements in the principle of respect for autonomy. Married couples and cohabiting partners often make healthcare decisions to- gether (Osamor & Grady, 2018). Whether deci- sions are made jointly or individually, a careful balance between a person’s freedom from con- trolling influences and capacity for intentional action is necessary. The principle of respect for autonomy means that healthcare professionals respect patients’ choices and their right to their opinions. While respecting the principle for autonomy, providers should offer information on efficient, cost-containing treatments with a balance between risks and benefits of the proposed treatments, the costs to society for

Medicalization 171

patients to maintain unhealthy behaviors, and patients’ responsibility for self-care.

Another cultural consideration is the manner in which the decision is made. Gener- ally speaking, people want to know how to care for themselves, but sometimes patients value input from their families and will not make decisions without direction from them. In this case, a decision will come from a family think- and-do approach rather than a unilateral patient decision. Some cultures from Eastern traditions, such as Asian cultures, believe the head of the family should make the decisions, whereas Native Americans prefer grandpar- ents to make all the healthcare decisions. Beliefs such as these can be in conflict with the Western tradition in the United States, where there is an emphasis on self-control, self-care, autonomy, money, and cure over care. Prac- tices such as the extensive use of life-sustaining methods and complex treatments demonstrate the focus on curing over caring, no matter how much the cure costs.

The application of an adaptation theory has the potential to reduce cultural conflicts. The question is, to what extent, if at all, will a person choose to adapt in the physical and social environment where they live? Some, but not all, people choose to adapt their cul- tural traditions to the broader environment. “When cultural conflicts occur, it is often because what is successful under one set of environmental circumstances may be less so under others” (Galanti, 2004, p. 17). Nurses have a role in adaptation; specifically, they can promote adaptation to a point of individual comfort to reduce the chance of social isola- tion and anonymity. In their codes of ethics, the American Nurses Association (ANA, 2015) and the International Council of Nurses (ICN, 2012) emphasized that nurses should care for patients in a respectful and unbiased way (see Appendix B for the ICN code of ethics). The ICN Code of Ethics for Nurses (2012) states the following:

Inherent in nursing is a respect for hu- man rights, including cultural rights, the right to life and choice, to dignity

ETHICAL REFLEC TION: CRITICAL ELEMENTS IN THE PRINCIPLE OF RESPEC T FOR AUTONOMY

Respect for autonomy is one of the four biomedical principles (respect for autonomy, beneficence, nonmaleficence, and justice). Beauchamp and Childress (2012) recognized three conditions for a person’s choice to be considered autonomous.

Intentionality: the patient’s intention to act Understanding: the patient’s understanding of

the action No external control: the patient is not

controlled by another person

■ Describe a clinical situation you have seen in which all three factors of autonomy were evident before or when the patient made a choice.

■ Describe a clinical situation you have seen in which one or more of the factors of autonomy were not present before or when the patient made a choice.

Cultural Views on Medicalization and Treatment Regimens In a complex mix of treatment regimens and medicalization, effective care involves respecting the cultural values with regard to autonomy, in- dependence, self-care, and authoritative figures of the family. In the United States, healthcare professionals value and depend on their ability to teach self-care strategies to patients in an effort to reduce illness and disease (Galanti, 2004). The patient’s values often conflict with the West- ern values acquired by providers of care. Some patients and families of diverse cultures may not necessarily value a provider’s or nurse’s demon- strated eagerness to provide education. Instead, they may view the up-front eagerness as more of a coercive warning tactic with negative conse- quences rather than as a care strategy.

172 Chapter 7 Adult Health Nursing Ethics

and to be treated with respect. Nursing care is respectful of and unrestricted by considerations of age, colour, creed, culture, disability or illness, gender, sexual orientation, nationality, politics, race or social status. (Preamble, para. 2)

Often, though, chronic disease is manageable (Martin, 2007). Even with exponential advances in medical technology and treatments, the num- ber of people with chronic disease has continued to increase very rapidly in the past few decades.

ETHICAL REFLEC TION: EXPLORE YOUR EXPERIENCE WITH MEDICALIZATION

Discuss one situation in which you have experienced the effects of medicalization and a treatment regimen for a patient. This scenario can come from a personal family experience or your own nursing practice, either as a nurse or a student.

■ Explore the dynamics you observed among nurses and other providers of care, the healthcare system, and the family that influenced the patient’s choice of treatment and outcomes.

■ Describe the provider and nurse practice approaches in terms of their use of concordance, compliance, and adherence.

■ Discuss if and to what extent you observed a balance, if any, between patient choice and provider-prescribed treatment. Consider your perceptions of the degree to which providers and nurses exercised paternalism and respected human dignity, cultural values, and autonomy.

■ What ethical framework would guide your practice to facilitate meeting moral obligations described by the ANA and ICN codes of ethics? Consider a framework of utilitarianism, deontology, or virtue ethics. Please explain your rationale.

▸ Chronic Disease and Illness

The leading cause of death and disability in the United States is chronic disease, which is generally characterized by multiple etiologies, a long-lasting course of illness, and no cure.

RESEARCH NOTE: STATISTICS ON CHRONIC DISEASES LEADING TO DEATH OR DISABILIT Y IN THE UNITED STATES, 2012–2014

■ Most common and costly, but most preventable, chronic diseases include heart disease, stroke, cancer, type 2 diabetes, obesity, and arthritis.

■ In 2012, 117 million adults had a chronic health condition.

■ One of four adults in the United States had two or more chronic health conditions in 2012.

■ Seven of 10 causes of death in 2014 were due to chronic disease.

■ Heart disease and cancer, two of the chronic diseases, accounted for nearly 46% of all deaths.

Source: Centers for Disease Control and Prevention (CDC). (2017, June 28). About chronic diseases. Retrieved from https://www.cdc .gov/chronicdisease/about/index.htm

A few experts from different areas of the world label some diseases as lifestyle diseases because of their connection to lifestyle choices, such as smoking, the harmful use of alcohol and other drugs, an unhealthy diet, and physical inactivity. Some people have even questioned whether restricted and rationed access and resources to treatments for some lifestyle- related chronic diseases could be a justified ethical decision. As much as 25% of the global burden of disease is a consequence of lifestyle choices and behaviors, and this statistic is rapidly rising. In fact, the World Health Organization (WHO) predicted that by 2020, 7 of every 10 people in developing countries—twice as many as today— will develop a lifestyle-related chronic disease and other noncommunicable diseases (WHO,

Chronic Disease and Illness 173

2014). Additionally, noncommunicable diseases are a leading cause of death in the world. In 2012, for instance, 68% of all deaths were due to noncommunicable diseases (WHO, 2014).

Chronic illness refers to people’s percep- tion of their quality of life and the difficulty of living with and experiencing a chronic disease (Martin, 2007). People with chronic disease ex- perience a collection of symptoms they describe as long-term affliction and suffering. The odds for a longer life span increase due to technol- ogy advances and better treatments, but con- sidering this statistic, whether viewed as good or bad, people with chronic disease and illness

experience a longer life of pain and suffering. Carter, Walker, and Furler (2002) attempted to define chronic illness qualitatively and more comprehensively through interviews with par- ticipants and an extrapolation of themes, but after analyzing the findings, the Chronic Illness Alliance never agreed on a universal definition of chronic illness. What is interesting in this research are the comments made by the par- ticipants about their experiences with chronic illnesses and how those illnesses have affected their lives. Most participants saw chronic ill- ness as a negative state that robs them of any hope for recovery.

RESEARCH NOTE: SHARED MEANING OF CHRONIC ILLNESS— PARTICIPANTS’ VIEWS

Participants in this Australian study reported their lived experiences with various chronic illnesses. Arthritis or musculoskeletal diseases topped the list of the 27 diseases and illnesses, followed by mental depression, multiple sclerosis, breast cancer, chronic pain, asthma, epilepsy, stroke, thyroid problems, and hypertension. Other diseases were less frequent. The researchers extrapolated nine major themes from the narratives of the 43 participants’ lived experiences. The themes are as follows:

■ Social impact of living with a chronic illness: This theme includes the following: (1) not being able to work; (2) living with an illness that will lead to dependency or even death, poverty, isolation, and loneliness; and (3) requiring many types of support in the home.

■ Relationship between the patient with a chronic illness and medical providers: Patients felt that healthcare providers were frustrated by their chronicity, the healthcare staff were not properly trained to care for them, the medical model was dominant in terms of the many treatments and medications that did not seem to help, there was poor medical management, and the treatments were inconsistent.

■ Stigma associated with chronic illness: Patients had feelings of discrimination and stigmatization, friends and family told the loved one to try harder, patients were labeled as noncompliant by medical and nursing providers if they did not or could not follow the regimen, and patients were labeled as difficult if they verbalized that the regimen was not working well.

■ Labeling and classification: Patients felt that being labeled or classified in certain medical language brought about negativity from the wider global perception, and terms such as chronic, long standing, and long term were labels that brought about discrimination.

■ Need for a new definition of chronic illness: Patients desired a new definition with a broader perspective on chronic illness that includes the complexity of their experiences with the chronic illness.

■ Essential features of chronic illness: Patients believed their chronic illness had the following features: • Ongoing and problematic • Quality of work compromised • Relationships compromised • Lifelong and substantial commitment by caregiver • Elements of uncertainty

174 Chapter 7 Adult Health Nursing Ethics

Ethical Concerns and Suffering Carter et  al.’s (2002) study uncovered signifi- cant global implications for those who care for patients with chronic disease and illness. Some fundamental ethical concerns are a patient’s feeling of a lack of control, patient suffering, and difficulty in accessing services. These three concerns likely relate to the medicaliza- tion issues discussed in the previous section.

Patients with chronic disease and ill- ness frequently feel as if their illnesses are controlling them rather than feeling they are in control of their own lives. As indicated in Carter et  al.’s (2002) findings, the reality of power imbalances between vulnerable-feeling patients and the persuasion of healthcare pro- viders magnifies negative feelings of lack of control. Unless patients are inclined to cause harm to themselves or others, healthcare pro- fessionals need to honor patients’ desires to control their own lives.

Catherine Garrett (2004) based her work on chronic illness and suffering on her own chronic illness experience with irritable bowel syndrome, a cluster of symptoms of gastric pain, intestinal pain and spasms, and malfunctioning digestion. Garrett has lived with this pain and suffering for more than 50 years, and her desire

in writing her book was to recount and share her story and scholarly research on sickness, disability, violence, grief, loss, confusion, and despair. These symptoms make up what she calls her suffering. Garrett explained suffering in chronic illness as just one of many types of suffering that has characteristics similar to how dying patients and families often describe their torment. Her work was a quest for the physical, emotional, intellectual, and spiritual compo- nents that link chronic illness and suffering.

Chronic illness results in a persistent, ongoing, and unhealing suffering, and if any inseparable part suffers, the whole person suffers. Chronic conditions produce enor- mous demands and conflicts, to which the person must respond. Patient suffering related to chronic disease and illness results from a combination of unrelieved pain, the stigma of chronic illness, and disparities of living with the potential consequences of a perceived re- duced quality of life. Patients with chronic dis- ease and illness often feel alone and miserable, and signs of suffering become evident. Many chronically ill patients struggle with trying to attach meaning to their suffering through soul searching and spirituality to find out why they have to suffer so much. They sometimes con- clude that they cause their own suffering.

• Expensive treatments and visits to providers • Incurable • Untreatable • Requires complex and ongoing management • Life threatening • Unresolved • Complex • Permeates the whole of life • Fatigue

■ Need for a health-promoting definition of chronic illness: Patients desired a new health-promoting definition to help others understand their difficulties and needs.

■ Consumers’ views that policies should account for chronic illness: Patients feared that society and the government would punish them for their chronic illness.

■ Chronic illness and activism: Patients desired a commitment to fight for their rights.

Data from Walker, C., & Markos, S. (2002). Developing a shared definition of chronic illness: The implications and benefits for general practice (GPEP 843: Final Report). Chronic Illness Alliance, Inc. Victoria: Health Issues Center.

Chronic Disease and Illness 175

Providing Ethical Care How do nurses provide care for patients with chronic disease and illness? Two strong themes came from Carter et al.’s (2002) research. The first theme is that people with chronic disease and illness require special attention and un- derstanding at a level that is not required by other patients, which means that nurses must first respect the patients’ human dignity and worth. Respect includes acquiring a greater understanding of the experiences of patients who live with long-lasting disease and illness. The second predominant theme is the need for a clear and comprehensive health-promot- ing definition of chronic illness, ultimately to avoid labeling and stereotyping.

Nurses need to plan quality interventions to address these themes. Providing care requires that nurses exhibit ideal ethical competencies; people with chronic disease and illness re- quire the same level of nursing competency or more. The competencies include the following: (1) moral integrity—honesty, truthfulness and truthtelling, benevolence, wisdom, and moral courage; (2) communication—mindfulness and effective listening; and (3) concern—advocacy, power, and culturally sensitive care.

Although all these ethical competencies are important, advocacy seems especially im- portant for building a trustworthy, therapeutic

relationship with patients who experience chronic disease and illness. One part of advo- cacy involves overseeing medical management, but a larger advocacy role requires emotional support with gentle nudging or teaching and a sense of security. To serve as an advocate, nurses will take certain risks, such as speaking out for their patients, possibly being caught in the middle of a conflict between the patient and others, and realizing the possibilities of what could be in the nurse–patient relationship.

Another ethical competency of particular importance for advocacy is communication, including two associated competencies: mind- fulness and effective listening. Practicing good communication facilitates advocacy, which occurs at the point of care and thereafter for the patient and family and on broader state and national levels. At the broader range of advo- cacy, nurses can serve on ethics committees and in political action groups and professional organizations. They can also address issues by writing for publication and engaging in me- dia events to speak on behalf of patients with chronic disease and illness. One such media example is publicly supporting measures to improve access to healthcare services and indi- vidualized care instead of the Band-Aid type of care that many patients experience. However, serving in the role of advocate at any level of care can be emotionally and physically draining.

ETHICAL REFLEC TION: A MIDDLE-AGED PATIENT WITH CRIPPLING RHEUMATOID ARTHRITIS

A middle-aged female patient, Ms. S., has a 23-year history of crippling rheumatoid arthritis. One day Ms. S. presented to the emergency department with a possible injury after bumping her head in a fall. She had no complaints of head pain regarding her fall, and the X-ray showed no injury to her head; rather, while in the emergency department, Ms. S. complained of extreme arthritic pain. Her history revealed long-standing crippling from years of inflammation in her joints and bones, erosion to her joints and bones, severe fatigue, intermittent fever, bilateral swelling of her hands and feet, general aching and pain, several prescription medications for arthritis, and a complete dependence on others for care and support. As her nurse, you see that Ms. S. is exhibiting signs of suffering to the point that she seems weakened and compromised. According to her family, her suffering experience has robbed her of joy, contentment, and enthusiasm. In your conversations

176 Chapter 7 Adult Health Nursing Ethics

▸ Organ Transplantation People appraised the organ transplantation success story as “an extraordinary leap in med- icine and surgery” and “one of the miracles of modern medicine” (Jonsen, 2012, para. 1). Only after many years of experimental trans- plants, mostly on animals and occasionally on humans, did surgeons and researchers realize success. As of 2018, more than 120,000 people were waiting on organs for transplants. Every day in the United States, approximately 95 people receive an organ transplant, and an av- erage of 1 person is added to the wait list every 10 minutes (Organ Procurement and Trans- plantation Network [OPTN], 2018a, 2018b).

In 1954, a surgeon named Joseph Murray, with the help of a physician named John Mer- rill, performed the first successful kidney trans- plant from one monozygotic twin to another

in Boston at Peter Bent Brigham Hospital, which is now known as Brigham and Women’s Hospital (Jonsen, 2012; President’s Council on Bioethics, 2003). The recipient lived for 8 years because the genetic materials of the twins were identical or similar. In 1990, Murray received a Nobel Prize in Medicine for his contributions. In 1967, a surgeon named Christiaan Barnard, from Cape Town, South Africa, performed the first human heart transplant.

Organ Transplant Ethical Issues During the Early Years Organ transplantation is more accepted in the 21st century than it was in the 1950s. Then, the ethical questions regarding removing organs from dead or living donors were just as intense and angst provoking as the ethical questions we face today regarding human cloning. Almost

with Ms. S., she said her passion for living is gone and she wants to be free from the burden of pain and suffering.

■ What is chronic disease and illness? ■ How does Ms. S.’s chronic disease sequelae fit into the concept of medicalization? ■ How do Ms. S.’s and her family’s expressions of her chronic pain and mental outlook compare to

Carter et al.’s (2002) findings about chronic illness? ■ What ethical issues arise when caring for patients with chronic disease and illness? ■ Integrate an ethical theory or approach in your plan of care, and then discuss nursing strategies.

When answering, explore ways you serve as an advocate for Ms. S. in terms of nursing practice and a multidisciplinary approach.

ETHICAL REFLEC TION: NURSES AND SELF-CARE

Self-care practices are vital for nurses to replenish their physical and emotional energy.

■ Self-care behaviors to promote mindfulness and self-healing include yoga, spiritual meditations, stress-relieving activities, Reiki, storytelling, writing, and other healing experiences. Nurses can choose their self-care practices, but it is equally important for nurses to encourage patients with chronic disease and illness to engage in some type of self-care behavior for their ongoing health.

■ Another aspect of self-care is professional development and education. Nurses and nursing students can increase their knowledge and understanding of ethics and bioethics by attending ethics conferences, doing in-depth reading, participating in ethics dialogues in face-to-face groups of nurses or in online blogs and open forums, completing live or online courses on ethics, and identifying and consulting a mentor who has expertise in ethics.

Organ Transplantation 177

instantly, after that first heart transplant, some reasonable ethical issues arose:

1. Should surgeons invade a healthy living donor’s body to retrieve an organ to benefit another person?

2. What method of selection can be used to maintain fairness?

3. Where will kidneys be obtained be- yond the living donors?

4. If the donor is dead, what are the criteria for death? (Jonson, 2012)

Murray, the first kidney transplant surgeon, posed the first question as he was trying to de- cide whether to obtain an organ from a healthy living person, especially in light of his oath to help sick people get well and not to cause harm to others. Question 2 was an issue because, for the first time in history, surgeons were forced to decide on criteria for organ recipients because of a shortage of available organs; in other words, for the first time ever, surgeons were literally choosing who would live and who would die. Questions 3 and 4 related to unclear informa- tion in terms of whether surgeons could retrieve an organ from a dead donor and, if so, at what point they should retrieve an organ. The defi- nition of death in the Uniform Determination of Death Act (UDDA) did not become law until 1981; therefore, clinical evidence to determine the death of a donor was uncertain. Another major issue was that many people were dying from organ rejection because of inadequate and harmful antirejection medications. It was not until 1978 that the effective immunosuppressive medication cyclosporine was available for use.

Sixty years after the first kidney transplant, people are still debating ethical issues regarding organ donation and transplantation, but the is- sues in the 21st century have shifted to a more diverse set of problems. One current, major issue is societal pressure for organ harvesting, which results from a global demand for organs that far outweighs the supply. Another major is- sue involves individuals questioning their own moral beliefs about death, organ donation, and the legal definition of death.

Organ Procurement Organ procurement is the obtaining, trans- ferring, and processing of organs for trans- plantation through systems, organizations, or programs. There is evidence that people continue to choose not to donate their organs, which is one of the reasons for the severe im- balance in supply and demand (Kerridge, Saul, Lowe, McPhee, & Williams, 2002; Rock, 2014). In the United States, 45% of adults are registered organ donors, compared to only 33% of people in the United Kingdom. Even though the num- ber of registered organ donors is low in the United Kingdom, findings in U.K. polls have indicated that the majority of the population (90%) supports organ donation (Rock, 2014).

Some reasons for not having a higher number of registered organ donors stem from misconceptions about the definition of brain death, mistrust of the medical profession, and religious views. Organ donation is a delicate subject, and for many people, organ donation conjures up uncomfortable feelings with death in general. The very thought of donating an organ could lead to individuals having disturb- ing thoughts about their own death or loss of a body part.

The demand for organs far exceeds the supply. To counterbalance the supply–demand crisis, the U.S. Department of Health and Hu- man Services continues to offer campaigns to increase the organ supply. For the reasons pre- viously outlined, societal ethical conflicts exist between the national organ donor campaigns and the values of potential donors. Utilitarian- ism is a common ethical framework for plan- ning and implementing goals to increase the organ supply. Conversely, at the core of many people’s beliefs is the value of respect for au- tonomy and human dignity, which is a deonto- logical ethical framework.

Because the public continues to place a high value on self-determination, utilitarian-based programs face challenges to increase the num- ber of organ donors. From a utilitarian perspec- tive, one organ donor can potentially save eight

178 Chapter 7 Adult Health Nursing Ethics

lives with his or her organs; however, people in the United States continue to die while waiting for an organ (OPTN, 2018b). Some countries apply a broader scope of utilitarianism by pro- moting either presumed consent, meaning that people automatically consent to donating their organs unless they specifically indicate otherwise, or mandated choice, meaning that competent people are required to indicate yes or no regarding their organ donation choice on license applications, tax returns, and other official state identification records. People are bound by this mandated choice, but an advance directive or a written change of mind can re- verse the decision.

In the United States, donor cards are le- gal documents that are used along with other documentation in the organ donation process. A donor card gives permission for the use of a person’s bodily organs in the event of death. Advance directives are also legal documents that are used to express one’s desires about organ donation. Adults in the United States express their wishes regarding organ donation through a required response. People can de- cline or willingly agree to donate their organs, and they can allow a relative to be their desig- nated surrogate.

Fair Allocation of Organs The National Organ Transplant Act of 1984 led the way for the creation of a national list of candidates; it is currently maintained by the United Network for Organ Sharing (UNOS; https://unos.org). This organization assures the allocation of organs to the best-matched candidates. This act also designated the es- tablishment of the OPTN, a national sharing organization that primarily safeguards fairness across the United States for all organ alloca- tion. The scarcity of available organs prompted the OPTN to apply two factors to assure a bal- anced decision: justice and medical utility. Justice is the “fair consideration of candidates and medical needs,” and medical utility is an effort to “increase the number of transplants

performed and the length of time patients and organs survive” (2018b, para. 1).

All the names of people in the United States who need an organ go on a national list only after a physician from one of the transplant centers evaluates each person for documented need. Although the criteria for organ donation varies by organ, the general guidelines include medical emergency, blood/tissue type and size match with the donor, time on the waiting list, and proximity between the donor and the re- cipient (Gift of Life Donor Program, 2018a).

The Gift of Life Donor Program began in 1974 as a small organization in Delaware for the purpose of managing a few kidney trans- plants. Today, it is a large national organization with an impeccable reputation that manages a variety of organs. The primary goal of the pro- gram is to “improve the quality of life of pa- tients awaiting transplantation by maximizing the availability of donor organs and tissues while upholding the highest medical, legal, ethical, and fiscal standards” (Gift of Life Do- nor Program, 2018b). Additionally, the organi- zation coordinates training for transplantation and donation professionals.

Ethical Issues of Death and the Dead Donor Rule The 1981 Uniform Determination of Death Act (UDDA) defined death as an irreversible cessation of circulatory and respiratory func- tions or irreversible cessation of all functions of the brain (President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1981). Rubenstein, Cohen, and Jackson (2006) posed the following questions regarding this legal definition of death:

1. Why does having a sound defini- tion of death matter at all?

2. What are the human goods at stake in getting this question right?

3. What are the moral hazards in get- ting it wrong? (Introduction, para. 5)

Organ Transplantation 179

The medical community adopted two guid- ing moral principles, known collectively as the dead donor rule. This rule functions as the norm for managing potential organ donations. The principles of the dead donor rule are that the donor must first be dead before the retrieval of organs and a person’s life and care “must never be compromised in favor of potential organ recipi- ents” (DeGrazia & Mappes, 2001, p. 325).

There are three unresolved ethical issues regarding the retrieval of a person’s organs in accordance with the legal definition of death: (1) properly caring for the dying person un- til death is pronounced, (2) the well-being of family members who must say goodbye to their dying loved one, and (3) the perceived good of the organ donation itself (Rubenstein et al., 2006).

The first ethical issue is assurance of un- compromised and competent care until the person is dead. The dead donor rule, if fol- lowed, applies here. Nurses and providers must first tend to the care of a dying patient, which could mean administering aggressive treatment or corroborating that the person’s treatment is medically futile.

The second ethical issue is the well-being of families and healthcare professionals. Spe- cifically, this ethical issue involves the risk of causing harm to the families when there has not been sufficient time for them to grieve and process the information versus the risk of not having viable organs if the families wait too long to come to terms with the death. A point made by Rubenstein and colleagues (2006) is that “these final moments of life and first moments of death belong to the grieving at least as much as to the departed person” (Introduction, para. 7), yet this same window of time also belongs to the procurement team and surgeons. Quick actions to remove the organs and deliver them to the unknown beneficiary are necessary.

Following the pronouncement of death, providers of care maintain the physical body by way of ventilation and circulatory support until the organ procurement team can harvest

the organs. The procurement teams, who are well trained, tread on morally shaky ground with the deceased’s family. Approaching the grieving family is difficult, even when the team just needs to confirm the patient’s or family’s wish of wanting to donate organs. Sometimes, the person’s death will have occurred suddenly, such as in a car accident or another injury, and families must have some time to come to terms with the death of their loved one.

When the potential donor is pronounced dead, the person continues to remain on a me- chanical ventilator as if still living, with warm skin and up-and-down chest movements, and the person continues to receive intravenous flu- ids. The family sees their loved one’s chest mov- ing up and down, and even though the person has been pronounced dead, the family sees their loved one as still living. This leaves healthcare professionals and families with feelings of ambi- guity. Nurses experience moral distress when a person is declared dead and will not be an organ donor, and the provider suspends medical treat- ment and ventilation support.

The third ethical issue involves the per- ceived good of organ donation itself. From one perspective, organ donation can give death a certain degree of meaning, allowing a last act of benevolence and selflessness. For example, when no hope exists for continuance of life, parents might donate their child’s organs as an imagined way to carry on that child’s life. From another perspective, patients are guaranteed some autonomy and self-determination when they preregister to donate their organs. The pro- curement team often views itself as an advocate for carrying out the patient’s wish after death. This act of advocacy goes beyond the principle of autonomy in health care, but carrying out the recipient’s wishes or releasing a dead per- son’s organs for the good of another is a widely accepted utilitarianism paradigm in society.

An intensely debated ethical question in- volves the dead donor rule and its legitimacy. Is the dead donor rule outdated? Alan Shew- mon (2004) clarified his thoughts on death as

180 Chapter 7 Adult Health Nursing Ethics

an unreal and unknowing ontological (study of being or existence) event without signifi- cant meaning, especially when society defines a person as dead by the legal standard created by people in the past 26 years.

As a consequence of questioning the sound- ness of the dead donor rule, a few bioethicists have attempted to define death as an event, instead of a process, as they grapple with the idea of expanding the scope of utilitarianism to overturn the dead donor rule; ultimately, organs could be retrieved from patients without higher brain function (Miller & Truog, 2008). Patients without higher brain function have no cognitive functioning, but they have an intact brain stem and usually breathe without the assistance of me- chanical ventilation. An example is patients who have only lower brain function (and no higher brain), such as those in a persistent vegetative state, like Terri Schiavo.

This notion raises the question of whether this practice would be ethical or legally accept- able. Pronouncing patients’ dead who have a functioning brain stem but no higher brain functioning would be a complete ontological shift in how society views death. Overturning the dead donor rule and retrieving organs from patients who are still alive by the UDDA defi- nition of death would be a utilitarian ethical framework when viewed from the perspective of longer-term quality of life and the number of people who could be saved; for example, one person’s organs may save eight lives. Society must answer these questions:

1. If the dead donor rule changes so or- gan teams can harvest organs from patients with only lower brain

function, how will the definition of death change to include these patients?

2. Do patients without higher brain function, but who are not dead by the current legal definition of death, have full moral standing?

Society needs to search for what death really means in terms of the moral imperative of doing good for others versus acting within moral limits and respecting primum non noc- ere (first do no harm).

Nurses and Organ Donors In intensive care units and on transplant teams, nurses manage care for potential organ donors, recipients, and their families on a daily basis. Organ procurement teams consist of nurses, surgeons, and other trained healthcare professionals. The psychosocial impact and outcome of the organ transplantation process for donors, donor families, and recipients are unique. According to the ANA Code of Eth­ ics for Nurses with Interpretative Statements (2015), nurses work within a moral frame- work of good personal character to promote the principles of autonomy, beneficence, non- maleficence, and justice. To review how those principles are evident in the essential aspects of the code, refer to the box Research Note: Attitudes of Caring for Brain Dead Organ Donors. Most nurses want to have a sense of satisfaction based on their belief that they are promoting human good, preserving their pa- tients’ dignity as much as possible, and main- taining a caring environment.

RESEARCH NOTE: ATTITUDES OF CARING FOR BRAIN DEAD ORGAN DONORS

Pearson, Robertson-Malt, Walsh, and Fitzgerald (2001) conducted a qualitative study of intensive care nurses’ attitudes and experiences toward brain dead organ donors. The researchers discovered two major themes of caring: the family and the nurse.

(continues)

Organ Transplantation 181

The ANA Code of Ethics for Nurses with Interpretive Statements (2015) includes some essential aspects for the care of adult patients in Provisions 1.2, 1.3, 1.4, 2.1, 5.1, 6.1, 6.2, and 8.3. These provisions consist of the importance of consideration of the following items:

■ Culture, values systems, belief systems, social support, gender orientation, and primary language

■ Interventions that optimize health and well-being of patients in nurses’ care

■ Patient autonomy in terms of decision making, cultural beliefs, and understand- ing of health, autonomy concerns, and relationships

■ A commitment of nurses to respect the uniqueness, worth, and dignity of patients

■ Respect for moral worth and dignity of all persons

■ Practice the “good nurse” virtues of knowl- edge, skill, wisdom, patience, compassion, honesty, altruism, and courage

■ Practice the promotion of human virtues and values of dignity, well-being, respect, health, and independence, among others

■ Create and maintain excellence in prac- tice environments that support nurses to fulfill their ethical obligations

■ Respect and be sensitive to the culturally di- verse populations’ unique healthcare needs worldwide

The Family Of central importance to the nurses in the study was meeting the needs of the patients’ families. Some important considerations for nursing care of donor family members are as follows:

■ Prioritizing the family’s needs ■ Empathizing with the family’s tragedy ■ Supporting the family’s decisions ■ Realizing that caring for the patient shows care for the family ■ Encouraging space and privacy for the family to grieve; say their goodbyes; and hopefully, accept

the situation ■ Not intruding on the family’s grief (p. 135)

The Nurse Another challenge for intensive care nurses is finding meaning in the case of each brain dead patient and the potential donors. In this study, nurses stated that brain dead patients should be treated as if they were alive because this action shows respect for the patients and their families and they were adamant that family members be shown respect and kindness. A compassionate way to show ultimate kindness is to give excellent care to the families’ loved ones.

In the midst of giving competent care, tending to family’s needs, and providing much-needed emotional support, nurses tend to become emotionally drained from feeling a need to clarify the definitions of brain death and other medical terms to families. Nurses also feel emotional strain in regard to their own ambiguities about the legal definition of brain death. With the expanding organ procurement system, nurses experience moral suffering associated with internal moral conflicts with regard to uncertainties of life and death. If nurses take advantage of extra education on organ transplantation nursing care and grieving families, they may be better prepared to manage their own personal emotions and those of families in crisis.

RESEARCH NOTE: ATTITUDES OF CARING FOR BRAIN DEAD ORGAN DONORS (continued)

182 Chapter 7 Adult Health Nursing Ethics

KEY POINTS

■ The traditional concept of medicalization from the 1970s, in what was known as the golden age of doctoring, and three market-driven forces have caused the provider’s role to shift from one of dominance (in the 1970s) to one of more deference.

■ The three market-driven forces contributing to this medical paradigm shift are managed care, biotechnology, and consumers. With the shift, patients now think like consumers as they choose types of medical services, providers, and insurance policies they want.

■ The ethical issue of promoting healthy behaviors yet trying to respect a person’s rights to self-determination is a complex situation. An ethical question to consider is “How far should providers of care go in terms of respecting the self-determination of patients when some noncompliant behaviors can cost society a great deal of money and other resources?”

■ Under the umbrella of medicalization are the concepts of compliance, adherence, and concordance. Patients with chronic disease and illness generally fit within the notion of being medicalized.

■ Chronic disease and illness include concepts such as suffering, labeling, isolation, and loneliness associated with long-standing disease.

■ There is a supply–demand crisis for organ donation. Utilitarian-based programs to increase the number of organs remain challenged.

■ Providing care to people with chronic disease and illness involves certain ideal nursing ethical competencies, which include the following: (1) moral integrity—honesty, truthfulness and truthtelling, benevolence, wisdom, and moral courage; (2) communication mindfulness and effective listening; and (3) concern—advocacy, power, and culturally sensitive care.

■ Although all the ethical competencies are important for nursing practice, advocacy and communication are especially relevant for providing care to patients with chronic disease and illness.

■ Primary nursing obligations to brain dead organ donors involve the care of the donor family and the high engagement of nurses in the care of the organ donor.

References American Nurses Association (ANA). (2015). Code of

ethics for nurses with interpretive statements. Silver Spring, MD: Author.

Barofsky, L. (1978). Compliance, adherence, and the therapeutic alliance: Steps in the development of self- care. Social Science and Medicine, 12, 369–376.

Beauchamp, T. L., & Childress, J. F. (2012). Principles of biomedical ethics (7th ed.). New York, NY: Oxford University Press.

Berg, J., Evangelista, L. S., & Dunbar-Jacob, J. M. (2002). Compliance. In I. M. Lubkin & P. D. Larsen (Eds.), Chronic illness: Impact and interventions (5th ed., pp. 203–232). Sudbury, MA: Jones and Bartlett Publishers.

Carter, M., Walker, C., & Furler, J. (2002). Developing a shared definition of chronic illness: The implications and benefits for general practice. Retrieved from http:// www.chronicillness.org.au/reports/

Centers for Disease Control and Prevention (CDC). (2017, June 28). About chronic diseases. Retrieved from https://www.cdc.gov/chronicdisease/about/index.htm

Conrad, P. (2007). The medicalization of society: On the trans­ formation of human conditions into treatable disorders. Baltimore, MD: Johns Hopkins University Press.

DeGrazia, D., & Mappes, T. A. (2001). Biomedical ethics (5th ed.). Boston, MA: McGraw-Hill.

Galanti, G. A. (2004). Caring for patients from different cultures (3rd ed.). Philadelphia, PA: University of Pennsylvania Press.

Garrett, C. (2004). Gut feelings: Chronic illness and the search for healing. New York, NY: Rodopi.

Gift of Life Donor Program. (2018a). How the waiting list works. Retrieved from https://www.donors1.org /learn-about-organ-donation/why-donate/transplant -waiting-list/

183References

Gift of Life Donor Program. (2018b). Mission statement. Retrieved from https://www.donors1.org/about-gift -of-life/overview/mission-and-core-values/

Horne, R., Weinman, J., Barber, N., Elliott, R., & Morgan, M. (2005). Concordance, adherence and compliance in medicine taking [PDF file]. Retrieved from http://www .netscc.ac.uk/hsdr/files/project/SDO_FR_08-1412 -076_V01.pdf

Illich, I. (2010). The medicalization of life. In I. Illich (Ed.), Limits to medicine—medical nemesis: The exploration of health (pp. 39–125). London, UK: Marion Boyars. (Original work published 1975)

International Council of Nurses (ICN). (2012). Code of ethics for nurses. Geneva, Switzerland: Author.

Jonsen, A. R. (2012). The ethics of organ transplantation: A brief history [PDF file]. Retrieved from https:// journalofethics.ama-assn.org/sites/journalofethics .ama-assn.org/files/2018-05/mhst1-1203.pdf

Kerridge, I. H., Saul, P., Lowe, M., McPhee, J., & Williams, D. (2002). Death, dying and donation: Organ transplantation and the diagnosis of death. Journal of Medical Ethics, 28, 89–94.

Martin, C. M. (2007). Commentary: Chronic disease and illness care. Canadian Family Physician, 53, 2086–2091.

Miller, F. G., & Truog, R. D. (2008). Rethinking the ethics of vital organ donations. Hastings Center Report, 38(6), 38–46. doi:10.1353/hcr.0.0085

Organ Procurement and Transplantation Network (OPTN). (2018a). At a glance. Retrieved from https://optn .transplant.hrsa.gov

Organ Procurement and Transplantation Network (OPTN). (2018b). How organ allocation works. Retrieved from http://optn.transplant.hrsa.gov/learn /about-transplantation/how-organ-allocation-works/

Osamor, P. E., & Grady, C. (2018). Debate: Autonomy and couples’ joint decision­making in healthcare [PDF file].

Retrieved from https://bmcmedethics.biomedcentral .com/track/pdf/10.1186/s12910-017-0241-6

Pearson, A., Robertson-Malt, S., Walsh, K., & Fitzgerald, M. (2001). Intensive care nurses’ experiences of caring for brain dead organ donor patients. Journal of Clinical Nursing, 10, 132–139.

President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1981). Defining death [PDF file]. Retrieved from https:// repository.library.georgetown.edu/bitstream/handle /10822/559345/defining_death.pdf ?sequence=1&is Allowed=y

President’s Council on Bioethics. (2003). Organ transplantation: Ethical dilemmas and policy choices. Retrieved from https://bioethicsarchive.georgetown. edu/pcbe/background/org_transplant.html

Rock, A. (2014). Why don’t more people want to donate their organs? Retrieved from http://globalbioethics .org/2014/11/20/why-do-so-few-people-donate-organs/

Rubenstein, A., Cohen, E., & Jackson, E. (2006). PCBE: The definition of death and the ethics of organ procurement from the deceased. Retrieved from https:// bioethicsarchive.georgetown.edu/pcbe/background /rubenstein.html

Shewmon, D. A. (2004). The dead donor rule: Lessons from linguistics. Kennedy Institute of Ethics Journal, 14(3), 277–300.

Walker, C., & Markos, S. (2002). Developing a shared definition of chronic illness: The implications and benefits for general practice (GPEP 843: Final Report). Chronic Illness Alliance, Inc. Victoria: Health Issues Center.

World Health Organization (WHO). (2014). Global status report on noncommunicable diseases [PDF file]. Retrieved from http://apps.who.int/iris/bitstream/handle/10665 /148114/9789241564854_eng. pdf;jsessionid=2B4FEF33 D6C1EF3709AE653C459C2418?sequence=1

184 Chapter 7 Adult Health Nursing Ethics

Ethics and the Nursing Care of Elders Karen L. Rich

▸ Aging in America The President’s Council on Bioethics (2005) proposed “we are on the threshold of a ‘mass geriatric society,’ a society of more long-lived individuals than ever before in human his- tory” (p. xvii). People are living longer and healthier lives during the past century due to technological advances in medicine and pub- lic health. According to the most recent U.S. Census Bureau (2011) data, there were approx- imately 50  million Americans older than age

62 years in 2010, which represents an increase of 21.1% since 2000. The number of people 100 years of age and older increased 5.8% be- tween 2000 and 2010. Although the number of human life years has been extended, questions remain about how the quality of those years is threatened by chronic debilitating conditions, ageism, and limited support and resources for elders and their caregivers.

Often, chronic conditions such as cerebro- vascular disease and Alzheimer’s disease cause elders to lose their most crucial link with others:

OBJECTIVES

After reading this chapter, the reader should be able to do the following:

1. Define ageism. 2. Identify factors that influence elders’ experiences of living meaningful lives. 3. Discuss the principle of autonomy as it relates to the ethical care of elders. 4. Assess the range of paternalism as it relates to ethical nursing practice. 5. Discriminate among different levels of moral agency. 6. Discuss different perspectives about quality-of-life assessments. 7. Identify the signs of elder abuse and appropriate nursing interventions.

185

CHAPTER 8

© Gajus/iStock/Getty Images

their voice within society. A loss of voice to ex- press individual feelings, desires, and needs is arguably one of the most profound causes of isolation for elders (Smith, Kotthoff-Burrell, & Post, 2002). Considerations about the loss of elders’ voices and society’s diminished recog- nition of the meaningfulness of their lives un- derlie many of the ethical issues discussed in this chapter. A large portion of elder-focused ethics is based on relationships elders have with other people in society, including their families and healthcare professionals. Often, the lives of elders are set aside from the lives of other adults in communities. It is this overall view of generational separateness that makes it necessary to study elder-focused ethics.

Ageism, a way of thinking that was orig- inally described by Butler (1975), has influ- enced some people within society to view elders as fundamentally different from others; consequently, some people cease to identify el- ders as normal human beings (Agich, 2003). Just as racism and sexism describe the stereo- typing of and discrimination against people because of their skin color or gender, ageism involves the same type of negative perceptions toward older adults based on age. Ageism per- petuates the idea that elders as a population are cognitively impaired, set in their ways, and old-fashioned regarding their morals and abil- ities (Agich, 2003; Butler, 1975).

It is probably disquieting to elders when they realize how youth oriented Western soci- ety is today. One can see that the media’s target audience is most often young adults and the financially affluent middle-aged population. The target audience for television advertis- ing is ages 24–54. Media emphasis is placed on having a beautiful body, even if expensive elective surgery is needed to do so. Pictures of beautiful and famous young people and cou- ples are prominently displayed on magazine covers, and young athletes are revered in West- ern society. Older actors, and particularly ac- tresses, lament the lack of good roles for them in the movie industry. It is not surprising that as people age they often become despondent

about the losses they experience in regard to their appearance and physical abilities. The seemingly vital, active, and glamorous lives of young people portrayed in the media serve as a stark contrast to what many elderly persons may be experiencing. Agich (2003) proposed “a society that values productivity and material wealth above other values is understandably youth oriented; a natural consequence is that the old come to be seen, and to see themselves, as obsolete and redundant” (p. 54).

So who are the elders in today’s society? Savishinsky (1991) stated:

The class of the elderly includes both the rich and poor, sick and well, sane and insane; it also embraces the rel- atively healthy so-called young old between 60 and 75 and the more vulnerable old old who are living be- yond their eighth decade. Some are intimately connected with family and community, whereas others are cut off from their kin. Some are active and ardent; others are disengaged and hopeless. (p. 2)

In the late 1700s and early 1800s, old peo- ple were encouraged to view their lives as a pilgrimage and to prepare for death while still participating in service to family and commu- nity. However, starting around the 1850s, so- cieties began to instill the belief that thoughts about death should be avoided. The emphasis changed to a focus on valuing “the virtues of youth rather than age, the new rather than the old, self-reliance and autonomy rather than community” (Callahan, 1995, p. 39).

These views formed the foundation of the beginning of ageism in the 20th century. The re- alities of old age were not consistent with the new worldview of the morality of self-control and au- tonomy; rather, the decay inherent in aging was associated with dependence and failure. Though ageism began to be a general social theme after World War II, today it may be focused more on elderly persons who are disabled (Cohen, 1988).

186 Chapter 8 Ethics and the Nursing Care of Elders

The lives of people of all ages are over- shadowed by an awareness of their eventual aging and death, and it is during one’s later years that these issues can no longer be ig- nored. When one actually does confront the facts of unavoidable aging and death, the mysteries involved can be startling. The fem- inist philosopher Simone de Beauvoir (1972) proposed “the old are invisible because we see death with a clearer eye than old age itself ” (p. 4). Agich (2003) interpreted this statement to mean that old people are set apart from the rest of society because people tend to look be- yond the elderly persons themselves, who they perceive as close to death, and instead see the prospects of their own death.

Moody (1992) proposed that the modern advances in biomedical technology that have facilitated longer lives for many elderly persons have made it necessary to confront critical eth- ical questions that society may want to ignore. These questions involve dilemmas about death and dying, the perception of what is meant by quality of life, and judgments about the mental and physical functional capacity of old adults. Moody questioned whether typical models and approaches to bioethics based on rights and duties fit well with considerations of eth- ics and aging. He asked, “What ethical ideals are appropriate for an aging society?” (p. 243). According to Moody, focusing on individual autonomy and justice among generations will not provide people with the desired ethical model for engaging in relationships with elders. Elder-focused ethics includes negotiation and a foundation in the virtues. Principles and rules also must be included, but principles and rules can thwart desired ends if the practical wisdom and good character of caregivers are not em- phasized as part of the overall scheme of ethics.

▸ Life Meaning and Significance

Once, while Mahatma Gandhi’s train was pulling slowly out of the station, a European reporter ran up to his compartment window. “Do you have a message I can take back to my people?” he asked. It was Gandhi’s day of silence, a vital respite from his demanding speaking schedule, so he didn’t reply. Instead, he scrawled a few words on a scrap of paper and passed it to the reporter: “My life is my message.”

—E. Easwaran, Your Life Is Your Message, (1992), p. 1, New York: Hyperion.

Reprinted by permission.

The issues of autonomy, vulnerability, depen- dency, and good relationships are important when considering ethics and elders. However, there is another issue that is important to the moral world of elders and those with whom they relate: elderly persons’ own feelings about the significance and meaning of their lives. According to Callahan (1995), underlying the strong desire by society and scientists to abol- ish the biology of aging is “a profound failure of meaning” (p. 39).

As people age, they often begin to realize the truth of Gandhi’s words—their life is their message—but does Western society support elders reflecting on the meaning and signifi- cance of their lives? In earlier times, tradition was highly valued by society, and the mean- ing and significance of elderly persons’ lives were viewed differently than they are today in our culturally and morally diverse society (Callahan, 1995). In the past, elders had an elevated status in communities because their wisdom was prized for its own sake and their wisdom placed them in a special position of being called on to perpetuate and interpret so- cietal moral traditions.

The diverse views in current Western culture sometimes undermine the community-wide role of elderly persons in passing on moral

ETHICAL REFLEC TION

How can nurses combat ageism in their local, state, and national communities?

Life Meaning and Significance 187

traditions; therefore, one of the traditional soci- etal purposes for elders has diminished. Today, elderly persons are important to businesses if they are financially well off, to families if they are willing and able to provide financial sup- port and care for grandchildren, to politicians as a voting block, and to nonprofit agencies as volunteers (Callahan, 1995). Some people be- lieve these roles for elders make older persons valuable within society. However, upon closer inspection, one can determine that it is not age that is held in high regard, but the accidental features of old age such as disposable income and free time.

According to Cole (1986), meaning is “an intuitive expression of one’s overall ap- praisal of living. Existentially, meaning refers to lived perceptions of coherence, sense, or significance, in experiences” (p. 4). Callahan (1995) described meaning as an inner feel- ing  supported by “some specifiable tradi- tions, beliefs, concepts or ideas, that one’s life” has purpose and is well structured in “relating the inner self and the outer world— and that even in the face of aging and death, it is a life which makes sense to oneself; that is, one can give a plausible, relatively satisfying account” (p. 33). Callahan described signifi- cance as “the social attribution of value to old age, that it has a sturdy and cherished place in the structure of society and politics, and provides a coherence among the generations

that is understood to be important if not in- dispensable” (p. 33).

Nurses may question why it is relevant to nursing ethics for them to consider elderly persons’ pursuit of life meaning and signifi- cance. The answer is that nursing ethics is first and foremost about relationships, alleviating patients’ suffering, and facilitating patients’ well-being. In relation to elders, nursing eth- ics also is focused on helping elderly persons find and keep their voice or means of express- ing their values and feelings. Finding meaning and significance alleviates suffering and pro- motes well-being for many elderly persons (see BOX 8-1).

The Search for Meaning Viennese neurologist and psychiatrist Viktor Frankl (1905–1997) wrote the influential book Man’s Search for Meaning, which was origi- nally published in 1959. More than 10 million copies of this book have been sold, and it was rated as one of the 10 most influential books by respondents in a survey conducted by the Li- brary of Congress (Greening, 1998). The book is about how Frankl found meaning in his ex- periences in Auschwitz and other concentra- tion camps during World War II. In the preface to the third edition of the book, Allport (1984) relayed Frankl’s belief that “to live is to suffer, to survive is to find meaning in the suffering. If

BOX 8-1 Discovering Meaning

In the story The Fall of Freddie the Leaf, a leaf named Freddie questioned a wise older leaf, Daniel, about life and its meaning. When Daniel told Freddie that all the leaves on their tree and even the tree itself would eventually die, Freddie asked, “Then what has been the reason for all of this? Why were we here at all if we only have to fall and die?”

Daniel answered, “It’s been about the sun and the moon. It’s been about happy times together. It’s been about the shade and the old people and the children [that sat and played beneath the tree]. It’s been about colors in Fall. It’s been about seasons. Isn’t that enough?”

Buscaglia, L. (1982). The fall of Freddie the leaf: A story of life for all ages. Thorofare, NJ: Charles B. Slack, pp. 19–20.

188 Chapter 8 Ethics and the Nursing Care of Elders

there is a purpose in life at all, there must be a purpose in suffering and in dying” (p. 9).

Frankl (1959/1984) suggested that meaning is the primary motivation in the lives of humans. He determined the last of his human freedoms in the concentration camp was to choose his at- titude toward his suffering. Being in a concen- tration camp was an unchangeable situation for Frankl, as are the facts that aging will happen to all people who do not die young, and all people will eventually die. It is in continuing to choose to find meaning in the circumstances people encounter as their life stories are created and unfold that will eventually form the fabric of a meaningful life when people are old.

Frankl (1959/1984) believed the transi- toriness, or fleeting nature, of life, similar to what Buddhists call impermanence, must not be denied by persons who are interested in putting the search for meaning at the center of their lives. Rather, even suffering and dy- ing can be actualizing experiences. Though no one can supply another person’s life meaning, nurses can help elderly people on their journey through life by aiding them to discover mean- ing in their lives and believe they are signifi- cant members of communities.

Updating the Eriksonian Life Cycle In exploring the moral treatment of elderly persons, Callahan (1995) proposed that the search for common meaning in aging requires a consideration of the updated theory of the life cycle as described by Erik Erikson. Erik- son’s book The Life Cycle Completed, first pub- lished in 1982, emphasized that all eight stages of the Eriksonian life cycle cannot be distinctly separated but rather are interrelated. After Erikson’s death at age 91, his wife, Joan, used her own ideas and notes written by her hus- band to update the book. She proposed a ninth stage of development and addressed other is- sues related to old-old people. Joan Erikson

was in her 90s when she wrote this updated book, and she used her voice to speak for many old-old people about their experiences.

The ninth stage of the life cycle is an exten- sion of the eighth stage, which is a time when elders develop to some degree either despair and disgust or integrity. Wisdom is the strength or virtue some elders depend on to successfully navigate both the eighth and ninth stages of de- velopment. The ninth stage is the stage of the lived experiences of persons in their eighth or ninth decade of life. The following are some of the difficulties occurring in the ninth stage that make wisdom and integrity hard for elders to achieve (Erikson & Erikson, 1997):

■ Wisdom requires the senses of sight and hearing to see, hear, and remember. Integ- rity is compared with tact (as in the word intact), which is related to touch. In their 90s, elderly persons often lose or have im- paired senses of sight, hearing, and touch.

■ When persons reach the age of late 80s or enter the decade of their 90s, despair may occur because people realize life is too short now to try to make up for missed opportunities.

■ Despair may occur because old-old per- sons are just trying to get through the day because of their physical limitations, even without the added burden of regrets about their earlier life. When persons believe their lives are not what they wished them to be, the despair deepens.

■ Persons in their 80s and 90s are likely to have experienced losses of relationships to a greater degree than at any other age. In addition to the suffering directly related to these losses, suffering is generated when the person realizes “death’s door is open and not so far away” (Erikson & Erikson, 1997, p. 113).

Like virtue ethicists who have drawn connections between the good life and being a vital member of a community (Blum, 1994;

Life Meaning and Significance 189

MacIntyre, 1984), Joan Erikson (Erikson & Erikson, 1997) said her husband, Erik, often proposed that the life cycle cannot be appro- priately understood if it is not viewed within a social context or in terms of the community in which it is actually lived. The Eriksons’ be- lief that individuals and society are interre- lated and people are constantly involved with the give and take of a dynamic community is a key position of communitarian ethicists today. When society lacks a sound ideal of old age, a holistic view of life is not well integrated into communities. If elders are excluded from the valued members of a community, they often are viewed as the embodiment of shame in- stead of the embodiment of wisdom.

Joan Erikson was convinced that if per- sons in their 80s and 90s had developed hope and trust in earlier life stages, they would be able to move further down the path to gero- transcendence, a concept she borrowed from the work of Lars Tornstam. Transcendence means “to rise above or go beyond a limit, [to] exceed, [to] excel” (Erikson & Erikson, 1997, p. 124). Erikson described the experiences of gerotranscendent individuals as follows:

■ Feeling a cosmic union with the universal spirit

■ Perceiving time as being limited to now or maybe only next week; otherwise, the future is misty

■ Feeling that the dimensions of space have been decreased to the perimeter of what the person’s physical capabilities allow

■ Feeling that death is a sustaining presence for the person and viewing death as being “the way of all living things” (p. 124)

■ Having an expanded sense of self that in- cludes “a wider range of interrelated oth- ers” (p. 124)

Erikson then activated the word transcen- dence into the word transcendance to associate its meaning with the arts and specifically “the dance of life [that] can transport us into all realms of making and doing with every item of body, mind, and spirit involved” (p. 127).

▸ Moral Agency It is generally believed that elders are a vul- nerable population because of the natural pro- gression toward frailty that occurs with aging. Because of this vulnerability, moral agency is a key consideration in relationships with elders. The ability to make deliberate choices and act deliberately in regard to important life expe- riences affecting the suffering and well-being of sentient beings, including oneself, refers to a person’s moral agency. Moral agency im- plies that people are responsible for and have the capacity to direct their beliefs and actions. Arguments about moral agency generally re- sult from debates about a person’s mental ca- pacity in regard to decision making. Referring to whether the person is or is not autonomous usually is at the heart of the debate.

Decisional Capacity Decisional capacity or incapacity is the abil- ity or inability to come to what most adults would consider to be reasonable conclusions or resolutions. Decisional capacity can gen- erally be equated with the concept of compe- tence, though competence has more of a legal connotation because it is closely tied to formal situations legally requiring informed consent. Questions of decisional capacity and compe- tence are associated most often with the three populations of “(a) mentally disabled persons, (b) cognitively impaired elderly persons, and (c) children” (Stanley, Sieber, & Melton, 2003, p. 398).

There is no one set of published criteria to be used in all assessments of decisional capac- ity and competence. A method cited by Beau- champ and Childress (2013) is unique because

ETHICAL REFLEC TION

In what ways does society perpetuate elders being viewed as the embodiment of shame?

190 Chapter 8 Ethics and the Nursing Care of Elders

it includes a range of the inabilities that some- one who is incompetent exhibits as opposed to being based on the person’s actual abilities. The standards begin by describing the behaviors persons with the least competence exhibit and moves toward standards requiring higher abil- ity. The standards Beauchamp and Childress (2013) drew from literature are as follows:

■ Inability to express or communicate a preference or choice

■ Inability to understand one’s situation and its consequences

■ Inability to understand relevant information ■ Inability to give a reason ■ Inability to give a rational reason (al-

though some supporting reasons may be given)

■ Inability to give risk- or benefit-related reasons (although some rational support- ing reasons may be given)

■ Inability to reach a reasonable decision (as judged, for example, by a reasonable per- son’s standard). (p. 118)

Nurses must be sensitive to the fact that vulnerable and dependent elderly patients of- ten are assumed to be mentally incapacitated or incompetent based on faulty impressions and ageism. When ungrounded assumptions are made based on a person’s frail appear- ance, for example, elderly patients can be left out of the process of decision making that is important to their well-being. Elders who are physically frail may not be included in making decisions ranging from deciding when they want to take their bath in a long-term care fa- cility to healthcare professionals aiding family members in legally taking away the older per- son’s decisional capacity for treatment options and the management of their financial affairs.

Though in most cases family members have ethical motives when caring for elderly family members, this is not always the case. Occasionally, family members and caregivers are more interested in their own self-serving desires than the well-being of an elder when the family or caregivers want to deem the elder

incompetent. Biased decisions, which can be intentional or unintentional, may be based on a desire to gain or maintain access to an elder’s money or on feelings of disgust or exaspera- tion. Nurses must be cautiously and wisely alert when assessing patients and situations that affect determinations of elders’ decisional capacity. As directed in the Code of Ethics for Nurses with Interpretive Statements (American Nurses Association [ANA], 2015), a nurse’s primary commitment is to the patient.

Autonomy and Paternalism Autonomy in bioethics means that persons are rational and allowed to direct their own health-related and life decisions. Paternalism occurs when a healthcare professional makes choices for a patient based on the healthcare professional’s beliefs about what is in the best interest of the patient or is best for the patient’s own good. Physicians and nurses sometimes believe patients are unable to understand the full extent of their care needs; a less justifi- able reason for paternalistic behavior is based on healthcare professionals’ belief that their profession accords them a warranted place of power over patients.

Although the practice of paternalism was once an expected behavior among healthcare professionals, it is not as readily accepted today by professionals or recipients of care. However, elders are still at a high risk for having their autonomy violated by healthcare professionals. This often results from incorrect assumptions about elders’ decisional capacities because of their frail appearance and the influences of so- cietal ageism. Even when elders are confused regarding the minor details of a situation, they may retain decisional capacity. In fact, elderly persons may be disoriented regarding time and the names and roles of persons while still retaining the capacity to make reasonable de- cisions regarding their lives and treatment. For example, if an elderly patient does not remem- ber the name of an emergency department physician when the physician comes and goes

Moral Agency 191

in and out of the room, this does not necessar- ily mean the patient is not competent to make treatment decisions. A more important assess- ment would be whether the patient knows she is in a hospital emergency department. Even this determination may not be sufficient to de- termine decisional capacity in regard to treat- ment decisions.

When elders are confused about some of the details regarding their current situation, healthcare professionals may be tempted to act paternalistically. Even if an elder does not know she is in a hospital emergency depart- ment, healthcare professionals should not automatically overrule the patient’s refusal of treatment. Instead, the whole context of the elder’s life must be evaluated in terms of the ability to understand the benefits, risks, and consequences of decisions and the overall consistency of the elder’s conversations and expressions of wishes over time. Healthcare professionals need to assess whether the elder’s current wishes are consistent with previously expressed desires and ways of being. People sometimes want to quickly overrule elders’ decisions and requests when their autonomy should rightfully be honored.

Some ethicists believe the excessive pater- nalistic behavior exhibited by physicians and nurses in the past has caused a backlash, cur- rently resulting in an elevated and imbalanced interest in respecting a patient’s autonomy. According to these ethicists, the pendulum has now swung too far in the direction of an overinflated interest in preserving autonomy, and this stance minimizes the importance of the give and take needed for good human relationships, a desire to cultivate a strong sense of community, and the usefulness of virtues (Agich, 2003; Callahan, 1995; Hester, 2001; MacIntyre, 1984, 1999; Moody, 1992). Therefore, behavior exhibited toward elderly patients may fall somewhere along a wide con- tinuum from a point of unjustified paternalism to a point of rigid adherence to respecting au- tonomy. Hester (2001), a communitarian eth- icist, argued that healing requires communal

involvement, not an overdeveloped interest in autonomy; when autonomy becomes the con- suming focus in health care, the involvement of communities and personal relationships may be sidelined.

Elderly patients often need the care of nurses not because they need someone to re- spect their capacity for autonomy but because they have lost mental abilities, physical abili- ties, or both. Rather than focusing on the use of rules and principles such as autonomy, a humanistic focus on facilitating the well-being and alleviating the suffering of elders may be the more important focal point of care. Respect for autonomy remains extremely important in bioethics and nursing ethics, but a humanis- tic approach that puts the patient’s humanity and well-being at the center of care is needed rather than an unquestioned allegiance to rule-oriented behavior.

Also, nurses may believe they should min- imize family involvement to support an elderly patient’s autonomy. Although healthcare pro- viders need to support elders in maintaining self-direction, family caregivers usually should not be excluded from decision making regard- ing elders’ care. Autonomous elderly patients are not necessarily bound by their family’s de- cisions or recommendations, but often, elders appreciate the caring concern of their family and even the appropriate decisional support provided by trusted nurses. Caregivers, in- cluding nurses who are well-known by elderly patients through repeated contact over time, are intimates, not strangers, to the patient. It is unreasonable to believe that nurses who care about the well-being of their patients would be objectively detached from actively interacting with patients regarding their healthcare deci- sions. When providing decisional support to elders, nurses need to use practical wisdom in evaluating whether capricious assump- tions, ageism, and prejudices are influencing the support and direction they are providing to patients. Ultimately, wise and compassion- ate decisional support is a critically important part of nursing care and patient advocacy.

192 Chapter 8 Ethics and the Nursing Care of Elders

Vulnerability and Dependence In addition to autonomy, vulnerability and de- pendence are integrally related to moral agency. To facilitate communities working toward the common good of their members, MacIntyre (1999) emphasized that people need to ac- knowledge their animal nature. When realiz- ing that human nature is also animal nature, vulnerability and dependence are accepted as natural human conditions. Vulnerability and dependence are inherent human conditions as people move from childhood to adulthood; barring complicating circumstances, people progress from vulnerability and dependence in childhood to being capable of independent practical reasoning as adults.

As adults, however, humans may reexpe- rience vulnerability and dependence due to the effects of physical and cognitive changes during aging. According to MacIntyre (1999), ethicists frequently talk in terms of stronger, independent persons benevolently bestowing

their virtues on people who are vulnerable and dependent. Nurses would do well to keep in mind that all people are subject to vulner- abilities and dependence, even nurses them- selves. There is a vast amount of knowledge to learn from vulnerable and dependent elders if nurses are open to hearing and relating to their patients’ life stories (Butts & Rich, 2004).

Dementia Nurses, particularly those working in home care and long-term care settings, often pro- vide care to patients with dementia. Kitwood (1997) suggested our evolving culture has sup- ported society and healthcare communities treating persons with dementia as the “new outcasts of society” (p. 44). According to Jen- kins and Price (1996), the loss experienced by persons with dementia can be likened to a loss of personhood. Examples of personal tenden- cies that depersonalize other people are listed in BOX 8-2.

BOX 8-2 Depersonalizing Tendencies to Avoid

1. Treachery: Using deception to distract or manipulate 2. Disempowerment: Not allowing persons to use their abilities 3. Infantilization: Patronizing; acting as an insensitive parent would act toward a child 4. Intimidation: Inducing fear through physical power or threats 5. Labeling: Using a category, such as dementia, as the basis for interactions and explanations 6. Stigmatization: Treating someone as an outcast or a diseased object 7. Outpacing: Pressuring others to act faster than they are able; presenting information too rapidly 8. Invalidation: Failing to acknowledge others’ subjective experiences and feelings 9. Banishment: Physical or psychological exclusion

10. Objectification: Treating others as a “lump of matter” rather than as sentient beings 11. Ignoring: Talking or interacting with others in the presence of a person as if he or she is not there 12. Imposition: Forcing a person to do something; overriding or denying the possibility of choice 13. Withholding: Refusing to provide asked-for attention or to meet evident needs 14. Accusation: Blaming for actions or failures that arise from lack of ability or misunderstanding 15. Disruption: Crudely intruding into a person’s actions or reflections 16. Mockery: Humiliating; making jokes at another’s expense 17. Disparagement: Damaging another person’s self-esteem; conveying messages that someone is

useless, worthless, [or] incompetent

Data from Kitwood, T. (1997). Dementia reconsidered. Buckingham, UK: Open University Press, pp. 46–47.

Moral Agency 193

When people become adjusted to the dwindling capacities of persons with demen- tia, they often begin reacting to these people as if they are less than persons (Moody, 1992). People with dementia can still be aware of their feelings even when the person they once seemed to be appears to be withering away. It is reasonable to assume that an extreme sense of vulnerability can occur as a person enters the early and middle stages of progressive demen- tia. This occurs when a remainder of cognitive ability may still exist in the awareness of per- sonhood and connectedness to the environ- ment and to others.

Kitwood’s (1997) reference to persons with dementia becoming the outcasts of so- ciety is relevant when these people lose their dignity in terms of how other people perceive them. Dignity is acknowledged or denied in the relatedness of daily interactions between people with dementia and their significant others and healthcare professionals. Though families and nurses may not recognize the subtle risks involved, dignity may be jeop- ardized when caregivers are so focused on making ethical decisions regarding the care of persons with dementia that they forget to actually relate to the persons themselves (Moody, 1992).

Family and paid caregivers of people with dementia often become frustrated and anx- ious. Nurses can serve as mentors to other caregivers by exhibiting the virtues of com- passion and equanimity when interacting with patients with dementia and their families. Gentle communication used by nurses helps to support the overall sense of dignity surround- ing the care of patients with dementia. Envi- ronmental calm is created with gentle words as opposed to an environment of fear and anx- iousness that can be created when loud and harsh words are used. Inexperienced caregiv- ers learn by observing nurses. Nurses always must be aware of their potential to ultimately help or harm patients by the example they set for others.

▸ Virtues Needed by Elders

May (1986) asserted that aging is a mystery rather than a problem and, as a society, peo- ple must focus on how they behave toward aging rather than on how to fix it. Doctors’ and nurses’ positions of power as compared to the seemingly passive beneficiary position of vulnerable patients is an important topic in bioethics. The behavior of healthcare pro- fessionals directed toward aged individuals is significant because elderly persons some- times perceive the treatment they receive from healthcare professionals as symbolic of what they can expect from the larger community.

May (1986) proposed that even when they are seemingly powerless, elderly persons remain moral agents who are personally re- sponsible for the quality of their lives. An ethic of caregiving that is one sided on the part of nurses and physicians is not the answer to power imbalances between healthcare profes- sionals and patients. Elders may experience more meaning in their lives if they remain dy- namically involved in creating their own sense of well-being. Life is not static; it can be vital into old age.

The following are virtues May (1986) pro- posed that elders need to cultivate to enhance the quality of their moral lives. These virtues were considered valuable enough to be in- cluded by the President’s Council on Bioeth- ics (2005) in their report Taking Care: Ethical Caregiving in Our Aging Society. Nurses who are aware of the continued moral development that occurs in old age can support elderly pa- tients in cultivating these virtues as elders con- tinue their journey of moral progress.

Courage St. Thomas Aquinas’s definition of courage as “a firmness of soul in the face of adver- sity” (May, 1986, p. 51) is applicable to elderly

194 Chapter 8 Ethics and the Nursing Care of Elders

persons. Elderly persons need courage when facing the certainty of death and loss in their lives.

Humility Elderly people need humility when their dig- nity is assaulted through seeing and feeling their bodily decay, they interpret the looks they receive from young people as a sign that their frailty is noticeable and possibly repugnant to others, and they progressively lose more peo- ple and things of value in their lives. Humility is a virtue also needed by caregivers to coun- teract the arrogance that may arise because of their position of power in their relationships with elders. Nurses need to be receivers as well as givers in patient–professional relationships; nurses can receive the gifts of insight and prac- tical wisdom when they actively listen to the narratives of their elderly patients who have lived many years and experienced much joy and suffering.

Patience Although old age sometimes stimulates the emotions of bitterness and anger, a positive conception of the virtue of patience can help combat these reactive emotions. “Patience is purposive waiting, receiving, willing . . . it re- quires taking control of one’s spirit precisely when all else goes out of control” (May, 1986, p. 52). Patience is the virtue that can help el- ders bear the frustrations of their frail bodies rather than cursing their fate and becoming frustrated with issues such as being short of breath when trying to walk short distances.

Simplicity Simplicity is a virtue referred to by Benedic- tine monks as a moral mark of old age. Sim- plicity becomes the virtue of a pilgrim who “has at long last learned how to travel light” (May, 1986, p. 53). Simplicity is exhibited

when elderly persons experience great joy in the small pleasures of life, such as a meal with friends, rather than in accumulating material possessions.

Benignity Benignity is another moral mark of old age, according to the Benedictines. Benignity is defined “as a kind of purified benevolence” (May, 1986, p. 53). It is opposed to the vice of grasping and avarice (greed) associated with some elders’ attempts to hold onto life in the face of death. Benevolence provides an answer to the tightfistedness of avarice, “not with the empty-handedness of death, but the open- handedness of love” (p. 53). Elders who exhibit the virtue of benignity usually have realized the meaning of their lives and the meaning that can be found in their deaths. They have learned to find joy in serving others.

Integrity The virtue of integrity represents “an inclusive unity of character” (May, 1986, p. 53) summa- rizing all the other virtues of character in old age. Character is a moral structure and requires an overriding virtue when character is “at one with itself ’ (p. 53). Integrity, or an intactness of character, is the foundation that helps elders remain kind and optimistic in terms of their transcendent connection with the universe, even when loss and impermanence could eas- ily pull them in a more negative direction.

Wisdom Wisdom, or prudence, makes integrity possi- ble through the lessons learned from the ex- periences of one’s past. Prudence was defined by medieval moralists as consisting of three parts: memoria, docilitus, and solertia. Me- moria “characterizes the person who remains open to his or her past, without retouching, falsifying, or glorifying it” (May, 1986, p. 57).

Virtues Needed by Elders 195

Docilitus does not represent the passiveness of one who is merely docile but rather is “a ca- pacity to take in the present—an alertness, an attentiveness in the moment” (p. 58). It implies a contrasting state from the need to talk exces- sively that sometimes serves to separate elders from others. Solertia is “a readiness for the unexpected” (p. 58). It provides a contrast to being inflexible with routines; however, some amount of ritual helps elders develop strength of character (see BOX 8-3).

Detachment and Nonchalance Detachment and nonchalance are similar vir- tues. May (1986) proposed that detachment is a virtue linked with wisdom and is consistent with what Erikson defined as “an attitude that depends in part upon a store of experience” (p. 58). People who are experienced weigh and react to situations wisely, calmly, and with love; people who are inexperienced overreact and become engulfed by catastrophe. May based nonchalance on a biblical virtue that allows one the “capacity to take in one’s stride life’s gifts and blows” (p. 59). For example, the virtue of de- tachment or nonchalance might allow elderly persons who have serious medical problems to enjoy the gifts in their lives, such as being with their great-grandchildren, while calmly ac- cepting the realistic assessment that they may not live to see their great-grandchildren gradu- ate from college.

Courtesy Courtesy too is based on a biblical link to wisdom. Courtesy is the “capacity to deal honorably with all that is urgent, jarring, and rancorous on the social scene” (May, 1986, p. 59) (see BOX 8-4).

Hilarity A final virtue outlined by May (1986) is an- other virtue of old age identified by Benedic- tine monks. Though the risk for depression is more common in elders than at other ages

BOX 8-3 Flexibility and Life

When a man is living, he is soft and supple; when he is dead he becomes hard and rigid. When a plant is living, it is soft and tender; when it is dead, it becomes withered and dry. Hence, the hard and rigid belongs to the company of the dead. The soft and supple belongs to the company of the living.

Reproduced from Tzu, L. (1989). Tao te ching (J.C.H. Wu, Trans.). Boston, MA: Shambhala, p. 155. (Original work published 1961). Reprinted by permission.

BOX 8-4 Last Acts of Courtesy

Ida was a 79-year-old Alzheimer’s patient seen by Dr. Muller, a psychiatrist, in the emergency room (ER) because she became agitated at her foster home. Ida looked younger than her years and “still had some of the light that usually leaves the face of the demented.” Her score was 7 out of 30 on the Mini Mental Status Exam. “Ida gave little information during the interview, though she showed every sign of wanting to cooperate.” Plans were made for Ida to be discharged back to the foster home with a prescription for haloperidol. When Dr. Muller went to say good-bye to Ida he found her “straightening the sheet and flattening out the pillow on the gurney where she had been placed prior to the interview. She was trying to put [Styrofoam cups and food wrappers] into a trash container” but was having difficulty in doing so. Dr. Muller stated, “I was struck by what was still left of this sweet lady’s demented brain and mind—which did not know the year, season, month, or day—that made her want to attempt these last acts of courtesy before leaving the ER.” Muller quoted neurologist Oliver Sacks, who stated “style, neurologically, is the deepest part of one’s being, and may be preserved, almost to the last, in a dementia.”

Data from Muller, R. (2003). Psych ER. Hillsdale, NJ: The Analytic Press, pp. 63–65.

196 Chapter 8 Ethics and the Nursing Care of Elders

because of conditions such as naturally low- ered serotonin levels; anxiety over fixed in- comes; physical, personal, and material losses; and disturbed sleep patterns, the monks wisely believed hilarity is a realistic virtue of old age. Hilaritas is “a kind of celestial gaiety in those who have seen a lot, done a lot, grieved a lot, but now acquire that humored detachment of the fly on the ceiling looking down on the hu- man scene” (p. 60). It involves not taking one- self too seriously.

▸ Quality of Life What do people mean when they discuss the issue of quality of life? Often, people, including healthcare professionals, talk about quality of life as if it were a self-evident concept. But is it? According to Jonsen, Siegler, and Winslade (2010), determinations of quality of life are value judgments, and value judgments imply variations among the people who are deter- mining value. If it is determined that a patient’s quality of life is seriously diminished, justifi- cations often are proposed to refrain from life-prolonging medical treatments. Some people find this position problematic because of their views about the sanctity of life—these people believe because all human life is sacred, life must be preserved no matter what the quality of that life might be.

for the sanctity of life. Scales have been devel- oped and measures of physical and psycholog- ical functions have been suggested to objectify quality-of-life determinations. However, peo- ple differ significantly in how they respond to scales and measurements to quantify the quality of their own or others’ lives. Studies have shown at least one group of healthcare professionals— physicians—frequently rate the quality of a pa- tient’s life lower than the patient rates it (Jonsen et al., 2010).

The determination of the quality of a life can be divided into categories of personal eval- uations and observer evaluations. According to Jonsen et  al. (2010), a personal evalua- tion is “the personal satisfaction expressed or experienced by individuals in their own physical, mental, and social situation” (p. 113). Observer evaluation refers to quality-of-life judgments made by someone other than the person living the life. Observers tend to base their evaluations on some standard below which they believe life is not desirable. It is observer evaluations that generate most ethi- cal problems in regard to quality-of-life deter- minations because observer evaluations can reflect incorrect assumptions, biases, preju- dices, or beliefs about conditions that are not necessarily permanent, such as homelessness or family conditions.

Problems with quality-of-life determina- tions specifically related to elderly patients can arise due to discrimination against patients by healthcare professionals based on the patient’s chronological age, a perception of a patient’s so- cial worth, a patient’s dementia, or differences between the professional’s and the patient’s life goals and values (Faden & German, 1994; Jonsen et al., 2010). Decisions regarding treat- ment always should be made based on honest determinations of medical need and patients’ current or previously communicated prefer- ences. If a patient’s wishes were not previously communicated, decisions should be based on projections of what loved ones believe the pa- tient would want done. Problems can easily arise when professionals try to project what

ETHICAL REFLEC TION

Discuss your experiences with elders. Provide examples of situations in which you have observed elders displaying May’s (1986) virtues. How can nurses help elderly persons cultivate the virtues identified by May?

Many people believe treatment can be with- held or withdrawn based on quality-of-life de- terminations while still preserving a reverence

Quality of Life 197

they believe a reasonable person would want in a particular situation. It is at this point that prejudices and biased discriminations based on ageism can enter into observer evaluations.

When acting in regard to elderly patients, special attention needs to be focused on an assumption that values and goals are different among people of different age groups (Faden & German, 1994; Jonsen et al., 2010). The values that might be consistent among young health- care professionals could be expected to be dif- ferent from the values held by old-old adults. Automatic projections of values by nurses and other healthcare professionals are not consis- tent with the moral care of elderly persons. Elders may view their lives as having quality when younger persons, still in the prime of their lives, do not readily see the same quality. In addition to nurses using moral imagination in simply stopping to reflect about the dan- gers of forming automatic assumptions, con- ducting a values history with elderly patients when they enter a new healthcare system can

be invaluable in trying to ensure the ethical treatment of elders. This history must be re- evaluated as appropriate (see BOX 8-5).

As previously discussed, Frankl (1959/1984) maintained that “man’s search for meaning is the primary motivation in his life” (p. 105). Humans embark on the search for meaning to alleviate and understand suffering and to move toward well-being. Frankl proposed inner tension, rather than inner equilibrium, may result from the search for meaning, and he believed that in- ner tension is a prerequisite for mental health. Valuing the need to strive toward equilibrium and homeostasis (a tensionless state) is a dan- gerous misconception, according to Frankl. This way of thinking can be especially true when interacting with elderly persons whose whole being does not generally remain in a state of equilibrium.

An acceptance of the belief that equilib- rium is not necessarily the healthiest state sup- ports the belief that suffering should not be attacked as if it were something to eliminate

BOX 8-5 Conducting a Values History

The following are sample questions for conducting a values history with elders:

1. What would you like to say to someone who is reading a document about your overall attitude toward life?

2. What, for you, makes life worth living? 3. How do you feel about your health problems or disabilities? What would you like others (family,

friends, doctors, nurses) to know about these feelings? 4. How do you expect friends, family, and others to support your decisions regarding medical

treatment you may need now or in the future? 5. If your current physical or mental health gets worse, how would you feel? 6. How does independence or dependence affect your life? 7. What will be important to you when you are dying (e.g., physical comfort, no pain, family

members present)? 8. Where would you prefer to die? 9. What general comments would you like to make about medical treatment?

10. How do your religious background or religious beliefs affect your feelings toward serious, chronic, or terminal illness?

Modified from Institute for Ethics, University of New Mexico. (n.d.). Values history. Retrieved from https://hscethics.unm.edu/directives/values.html

198 Chapter 8 Ethics and the Nursing Care of Elders

at all costs. Rather, well-being often involves the relief of suffering through the acceptance of suffering. In discussing the often misguided goals of a modernist society, Callahan (1995) proposed that novelist George Eliot had cap- tured this philosophy with the word meliorism. The concept of meliorism describes “an ethic of action oriented toward the relief, not the ac- ceptance, of pain and suffering” (p. 30).

▸ Assessing the Capacity to Remain at Home

Assessing elders’ capacity to safely continue to live alone in their own homes is a problem of- ten faced by nurses working in the community and helping to plan discharges of patients from acute care to home care. These determinations become particularly difficult when frail elders adamantly want to remain in or return to their homes and caregivers disagree with an elder’s decision. Caregivers must consider the real

ETHICAL REFLEC TION

How might ageism affect end-of-life decisions and the elderly? What can nurses do to combat end-of-life care and decisions based on ageism?

An emphasis on holistic care has helped to eliminate some of the beliefs from the En- lightenment period that the human body can be compared with a machine (sometimes re- ferred to as reductionism). Mechanics fix ma- chines, but the healthcare professional–patient relationship should not be viewed in a sim- ilar way. The healthcare system and health- care professionals today often still perpetuate the meliorism described by Eliot. Meliorism causes doctors and nurses to work toward cur- ing disease and relieving suffering at all costs. In working with patients of all ages, but espe- cially in patients’ later years, attempts must be made to alleviate suffering while realizing that completely relieving suffering and curing dis- eases is not always possible. In these instances, the nurse’s goal is to help patients accept the pain and suffering that cannot be changed and find meaning in their suffering. Amid the chaos and pain of patients’ suffering, nurses can be compared to the calm person described by the Buddhist monk Thich Nhat Hanh (see BOX 8-6). Patients’ suffering can lead to a pro- found, transforming life experience for both patients and nurses.

BOX 8-6 Calm Within the Storm

In Vietnam there are many people, called boat people, who leave the country in small boats. Often the boats are caught in rough seas or storms, the people may panic, and boats can sink. But if even one person aboard can remain calm, lucid, knowing what to do and what not to do, he or she can help the boat survive. His or her expression—face, voice—communicates clarity and calmness, and people have trust in that person. They will listen to what he or she says. One such person can save the lives of many.

Data from Thich Nhat Hanh. (2001). Thich Nhat Hanh: Essential writings (R. Ellsberg, Ed.). New York, NY: Orbis Books, p. 162.

ETHICAL REFLEC TION

Healthcare professionals’ beliefs about the proper treatment of elders falls along a continuum from discounting elders’ personal quality-of-life judgments to believing only curing disease and being successful in eliminating physical suffering are worthwhile goals. Provide examples of nurses’ opportunities to act as patient advocates in relation to this continuum.

Assessing the Capacity to Remain at Home 199

and perceived capacities and incapacities of elders and question the safety of their living situation. Ways to assess cognitive capacity have been covered earlier in this chapter. If it is believed an elder is incapacitated, a consid- eration of respecting elders’ autonomy versus supporting caregivers’ beneficence may be needed. The ethical issue becomes a matter of deciding whether to act in a way Beauchamp and Childress (2013) called soft (or weak) paternalism.

“In soft paternalism, an agent intervenes in the life of another person on grounds of beneficence or nonmaleficence with the goal of preventing substantially nonvoluntary con- duct” (Beauchamp & Childress, 2013, p. 216). Nonvoluntary, or nonautonomous, actions are actions not based on rational decision making. Persons who are the receivers of soft paternal- istic actions must have some form of compro- mised ability for this form of weak paternalism to be justified. It is debatable as to whether soft paternalism actually qualifies as paternalism because acting in a person’s best interest is not usually disputed when people must be pro- tected from harm resulting from circumstances beyond their control, including a personal de- sire based on faulty information when a person is incapacitated. However, issues of self-harm often constitute dilemmas when elders with intact decisional capacity want to remain at home when it is not safe to do so because of the elder’s physical limitations. Family caregivers and healthcare providers must carefully weigh when and the degree to which weak paternal- ism is justified in preventing self-harm.

▸ Long-Term Care Issues regarding moral relationships between nurses and patients in long-term care facil- ities are similar to other issues discussed in this chapter; that is, the relationships often are focused on issues of autonomy. As previ- ously proposed, focusing too narrowly on re- specting autonomy can cause nurses to miss

the real day-to-day complexities that make up moral relationships with elders. In many instances, elders are in long-term care facili- ties because they are no longer able to exercise self-direction in safely caring for themselves. This fact sometimes makes attempts to respect and preserve autonomy a futile undertaking. When unrealistic goals are not acknowledged in long-term care, it often frustrates nurses and aides who work in long-term care facili- ties; unfortunately, these frustrations can ul- timately be directed against long-term care residents.

Pullman (1998) proposed that an ethic of dignity be used, as opposed to an ethic of autonomy, in long-term care. With an ethic of dignity, the moral character of caregivers is the focus rather than the autonomy of the recipients of care. Of course, autonomy must be respected when it is realistic to do so, but when working with long-term care residents who are no longer able to exercise their full autonomy, a communal ethic of dignity can provide a compassionate means of care. Even when elders are able to fully exercise their au- tonomous choices, an ethic of dignity provides an appropriate grounding framework from which to work.

ETHICAL REFLEC TION

Cohen (1988) said elders often focus all of their energy toward avoiding “the ultimate defeat, which is not death but institutionalization and which is regarded as a living death” (p. 25) (see BOX 8-7). How can nurses help to change the experience of residence in a long-term care facility being like a living death?

Pullman (1998) divided dignity into basic dignity, which is the dignity inherent in all humans, and personal dignity, which is an evaluative type of dignity decided upon by communities that does not have to be solely tied to a person’s autonomy. Personal dignity

200 Chapter 8 Ethics and the Nursing Care of Elders

can be viewed as a community’s valuing of the interrelationship of members of the commu- nity. Acknowledging elders’ basic and personal dignity, through the adoption of an ethic of dignity, includes the “confidence that caregiv- ers will strive to serve the on-going interests of their patients to the best of their abilities” (p. 37). If there is a belief that elderly residents of long-term care facilities need to be indepen- dent because being dependent is bad and the goal is to minimize the elders’ need for care rather than to provide more care, then the rela- tionships between nurses and elderly residents of long-term care facilities are in trouble from their outset.

Pullman (1998) suggested that long-term care often requires paternalistic interventions from the beginning of patient–healthcare provider relationships. He defined a rule of

justified paternalism as a guide for these paternalistic interventions: “the degree of pa- ternalistic intervention justified or required is inversely proportional to the degree of autonomy present” (p. 37). Nurses must be extremely sensitive and aware in ensuring that they cultivate the intellectual virtue of prac- tical wisdom so errors in judgment are not made about respecting patients’ autonomy versus practicing justified or weak paternalism in patient care.

When elders have the capacity to make choices regarding treatments and daily liv- ing activities, they should have the freedom to make personal decisions. Those options include such things as choosing to refuse medications and refusing physical therapy treatments. However, respecting elders’ au- tonomy does not mean compassionate nurses

BOX 8-7 Look Closer, See Me

The author of the following poem is unknown, but it is said to have been written by an elderly woman living in a geriatric facility in Scotland. It was found among the elderly woman’s belongings after she died and has been widely distributed since that time.

What do you see, nurse, what do you see, what are you thinking when you’re looking at me? A crabbit [crabby] old woman, not very wise, uncertain of habit, with faraway eyes. Who dribbles her food and makes no reply when you say in a loud voice, “I do wish you’d try?” Who seems not to notice the things that you do, and forever is losing a stocking or shoe. Who, resisting or not, lets you do as you will with bathing and feeding, the long day to fill. Is that what you’re thinking? Is that what you see? Then open your eyes, nurse; you’re not looking at me.

I’ll tell you who I am as I sit here so still, as I use [do] at your bidding, as I eat at your will. I’m a small child of ten with a father and mother, brothers and sisters, who love one another.

A young girl of sixteen, with wings on her feet, dreaming that soon now a lover she’ll meet. A bride soon at twenty—my heart gives a leap, remembering the vows that I promised to keep. At twenty-five now, I have young of my own who need me to guide and a secure happy home. A woman of thirty, my young now grown fast, bound to each other with ties that should last.

At forty my young sons have grown and are gone, but my man’s beside me to see I don’t mourn. At fifty once more babies play round my knee, again we know children, my loved one and me.

Dark days are upon me, my husband is dead; I look at the future, I shudder with dread . . . For my young are all rearing young of their own, and I think of the years and the love that I’ve known.

I’m now an old woman and nature is cruel; ’tis jest to make old age look like a fool. The body, it crumbles, grace and vigour depart, there is now a stone where I once had a heart.

But inside this old carcass a young girl still dwells, and now and again my battered heart swells. I remember the joys, I remember the pain, and I’m loving and living life over again.

I think of the years; all too few, gone too fast, and accept the stark fact that nothing can last. So open your eyes, nurse, open and see, not a crabbit old woman; look closer—see ME!!

Long-Term Care 201

should not take considerable time, if needed, to calmly discuss the potential consequences of controversial choices made by elderly per- sons. Nurses who work from an ethic of dig- nity are not emotionally detached from their patients but, instead, are willing to risk feeling a personal sense of failure or loss when their elderly patients make choices they believe are not in the elder’s best interest.

▸ Elder Abuse All people regardless of age or ability deserve justice.

—U.S. Department of Health and Human Services, Administration for

Community Living, Elder Justice

Nurses are frequently the first people to recog- nize that patients are the victims of violence or abuse; this is especially true in regard to emer- gency department and home care nurses. The moral care of elders requires nurses to be in- terested in recognizing the signs of abuse and in taking appropriate actions. Elder abuse in- cludes physical abuse, sexual abuse, emotional or psychological abuse, neglect, abandon- ment, and financial or material exploitation (National Center on Elder Abuse [NCEA], n.d., FAQ 1; Pozgar, 2013). Unfortunately, self-neglect is another form of elder abuse and one of the most frequent concerns reported to adult protective services.

Problems that may indicate elder abuse include the following:

■ Bruises, pressure marks, broken bones, abrasions, and burns may be an indication of physical abuse, neglect, or mistreatment.

■ Bruises around the breasts or genital area can occur from sexual abuse.

■ Sudden change in alertness and unusual depression may be indicators of emo- tional abuse.

■ Sudden changes in financial situations may be the result of exploitation.

■ Bedsores, unattended medical needs, poor hygiene, and unusual weight loss are indicators of possible neglect.

■ Behavior such as belittling, threats, and other uses of power and control by spouses or those who should be in a position of trust are indicators of verbal or emotional abuse.

■ Strained or tense relationships and fre- quent arguments between the caregiver and elderly person are also signs. (NCEA, n.d., FAQ 2)

Signs that self-neglect may be occurring include the following:

■ Hoarding of objects, newspapers/mag- azines, mail/paperwork, and so on, and/ or animal hoarding to the extent that the safety of the individual (and/or other household or community members) is threatened or compromised

■ Failure to provide adequate food and nu- trition for oneself

■ Failure to take essential medications or re- fusal to seek medical treatment for serious illness

LEGAL PERSPEC TIVE

Because nurses are both ethically and legally considered to be mandatory reporters of abuse, they need to do the following:

■ Report abuse to: • Child Protective Services • Adult Protective Services • Long-term care ombudsman (usually

when an agency or healthcare provider is involved)

• State licensing board (when healthcare provider is involved)

• Law enforcement (if required under statute)

■ When: • Written or verbal report within

24 hours of incident

Data from Westrick, S. J. (2014). Essentials of nursing law and ethics (2nd ed.). Burlington, MA: Jones & Bartlett, p. 133.

202 Chapter 8 Ethics and the Nursing Care of Elders

■ Leaving a burning stove unattended ■ Poor hygiene ■ Not wearing suitable clothing for the

weather ■ Confusion ■ Inability to attend to housekeeping ■ Dehydration (NCEA, n.d., FAQ 3)

Signs of abuse occurring within a health- care facility include the following:

■ Restraints: physician’s orders for restraints (should be time-limited), the number of patients who are physically restrained, the type of restraints used, the correct appli- cation of restraints, and how often staff check restrained patients

■ Signs of overmedication ■ Signs of harassment, humiliation, or

threats from staff or other patients ■ Patients being uncomfortable around staff ■ Signs of bruises or other injuries ■ Evidence of patient neglect, such as pa-

tients left in urine or feces without clean- ing (Pozgar, 2013, p. 431)

becoming state long-term care ombudsmen or getting involved annually with World Elder Abuse Awareness Day.

▸ Humanistic Nursing Care of Elders

Travelbee (1971) described the human-to- human relationship between a nurse and the recipient of care as a “mutually significant experience” (p. 123). According to Travelbee, “each participant in the relationship perceives and responds to the human-ness of the other; that is, the ‘patient’ is perceived and responded to as a unique human being—not as ‘an illness,’ ‘a room number,’ or as a ‘task to be performed’” (p. 124). Unfortunately, elders often feel de- humanized when interacting with healthcare professionals, which further compounds the dehumanization they encounter in society. Travelbee made a profound statement: “If an individual is related to as a ‘human being’ by at least one health worker he may be able to draw enough strength from the relationship to cope with ten other workers perceiving him as ‘patient’” (p. 37).

Nurses who are compassionate dedicate themselves to helping patients transcend or ac- cept unavoidable suffering. It is a challenge to relate to others compassionately, to really com- municate to the heart, according to Chödrön (1997). “Compassion is not a relationship be- tween the healer and the wounded. It is a rela- tionship between equals” (Chödrön, 2001, p. 50).

For many elders, the world is a lonely place. Nurses who have a sincere desire to alle- viate or facilitate acceptance of the suffering of this vulnerable group are widening the circle of compassion in the world.

Compassion and healing can be thought of as paired needs of elders. Capra (1982) de- scribed healing as a “complex interplay among the physical, psychological, social, and envi- ronmental aspects of the human condition” (p. 124). Capra postulated that healing has been

ETHICAL REFLEC TION

The U.S. federal government has four programs focused on elder abuse funded by the Administration for Community Living’s Office of Elder Justice and Adult Protective Services. Visit the following website and learn about specific ways nurses can become involved in elder justice: https://elderjustice .acl.gov.

Many elders do not have the physical or cognitive capability to seek help. Thus, it is critical that healthcare professionals be on the lookout for signs of abuse. At a minimum, nurses should know the signs of elder abuse and report suspected abuse. Nurses can also become active as volunteers in organizations and events to prevent elder abuse, such as

Humanistic Nursing Care of Elders 203

excluded from medical science because it can- not be understood in terms of reductionism. Healing suggests moving toward a wholeness that goes beyond a single human being; it is consistent with a belief in the interconnection of all beings and the universe. Healing does not imply curing; it is a realization that not all things can be fixed. This idea of healing en- compasses the recognition of the nature of im- permanence and accepts unpredictability and the inability to strictly control events.

Nurses must establish human-to-human relationships with elderly patients and recog- nize the interplay of many factors that may affect the older person’s state of well-being. Many factors affecting elders cannot be changed; they must be peacefully accepted and

used in achieving integrity. Caring for elders requires dynamic interventions blending art and science. Suffering and loss are inherent in the daily lives of elders, and the reality of impermanence forms a glaring presence that is difficult for the aged to ignore. Although there are many approaches in the ethical care of el- derly patients, nurses might adopt an approach to care similar to a way of being suggested by Thich Nhat Hanh (1998), based on the Bud- dhist Lotus Sutra. Thich Nhat Hanh stated the sutra advises one “to look and listen with the eyes of compassion.” He further stated that “compassionate listening brings about heal- ing” (p. 86). Compassionate listening by nurses gives individual elders their voice in an often uncompassionate world.

KEY POINTS

■ Ageism, or discrimination based on chronological age, underlies many ethical issues related to elders.

■ Society often neglects to notice the meaning of elders’ lives as scientists work to abolish the biology of aging.

■ Determinations of decisional capacity in regard to elders are sometimes made based on prejudiced assumptions rather than facts.

■ Elders may perceive the quality of their lives to be higher than healthcare professionals perceive it based on observational judgments.

■ Soft paternalism is sometimes a compassionate approach to caring for elderly persons. ■ Focusing on an ethic of dignity rather than a strict ethic of autonomy may be more realistic

in caring for some elders, especially in long-term care facilities, when elderly persons are not completely able to exercise their autonomy.

References Agich, G. J. (2003). Dependence and autonomy in old age:

An ethical framework for long-term care (2nd ed.). Cambridge, UK: Cambridge University Press.

Allport, G. W. (1984). Preface. In V. E. Frankl (Ed.), Man’s search for meaning: An introduction to logotherapy (3rd ed., pp. 7–10). New York, NY: Simon & Schuster.

American Nurses Association. (2015). Code of ethics for nurses with interpretive statements. Silver Spring, MD: Author.

Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.). New York, NY: Oxford University Press.

Blum, L. A. (1994). Moral perception and particularity. Cambridge, UK: Cambridge University Press.

Buscaglia, L. (1982). The fall of Freddie the leaf: A story of life for all ages. Thorofare, NJ: Charles B. Slack.

Butler, R. (1975). Why survive? Being old in America. New York, NY: Harper & Row.

Butts, J. B., & Rich, K. L. (2004). Acknowledging dependence: A MacIntyrean perspective on relationships involving Alzheimer’s disease. Nursing Ethics, 11(4), 400–410.

Callahan, D. (1995). Setting limits: Medical goals in an aging society with “a response to my critics.” Washington, DC: Georgetown University Press.

204 Chapter 8 Ethics and the Nursing Care of Elders

Capra, F. (1982). The turning point: Science, society, and the rising culture. New York, NY: Bantam Books.

Chödrön, P. (1997). When things fall apart: Heart advice for difficult times. Boston, MA: Shambhala.

Chödrön, P. (2001). The places that scare you: A guide to fearlessness in difficult times. Boston, MA: Shambhala.

Cohen, E. S. (1988). The elderly mystique: Constraints on the autonomy of the elderly with disabilities. Gerontologist, 28(Suppl.), 24–31.

Cole, T. R. (1986). The tattered web of cultural meanings. In T. R. Cole & S. Gadow (Eds.), What does it mean to grow old? Reflections from the humanities (pp. 3–7). Durham, NC: Duke University Press.

de Beauvoir, S. (1972). The coming of age (P. O’Brien, Trans.). New York, NY: Putnam.

Easwaran, E. (1992). Your life is your message: Finding harmony with yourself, others, and the earth. New York, NY: Hyperion.

Erikson, E. H., & Erikson, J. M. (1997). The life cycle completed (extended version). New York, NY: W. W. Norton.

Faden, R., & German, P. S. (1994). Quality of life: Considerations in geriatrics. Clinics in Geriatric Medicine, 19(3), 541–551.

Frankl, V. E. (1984). Man’s search for meaning: An introduction to logotherapy (3rd ed.). New York, NY: Simon & Schuster. (Original work published 1959)

Greening, T. (1998). Viktor Frankl, 1905–1997. Journal of Humanistic Psychology, 38(1), 10–11.

Hester, D. M. (2001). Community as healing: Pragmatist ethics in medical encounters. Lanham, MD: Rowman & Littlefield.

Jenkins, D., & Price, B. (1996). Dementia and personhood: A focus for care? Journal of Advanced Nursing, 24(1), 84–90.

Jonsen, A. R., Siegler, M., & Winslade, W. J. (2010). Clinical ethics: A practical approach to ethical decisions in clinical medicine (7th ed.). New York, NY: McGraw-Hill.

Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham, UK: Open University Press.

MacIntyre, A. (1984). After virtue. Notre Dame, IN: University of Notre Dame Press.

MacIntyre, A. (1999). Dependent rational animals: Why human beings need the virtues. Chicago, IL: Open Court.

May, W. F. (1986). The virtues and vices of the elderly. In T. R. Cole & S. Gadow (Eds.), What does it mean to grow old? Reflections from the humanities (pp. 43–61). Durham, NC: Duke University Press.

Moody, H. R. (1992). Ethics in an aging society. Baltimore, MD: Johns Hopkins University Press.

Muller, R. J. (2003). Psych ER. Hillsdale, NJ: Analytic Press. National Center on Elder Abuse (NCEA). (n.d.). Frequently

asked questions. Retrieved from https://ncea.acl.gov /faq/index.html

Pozgar, G. D. (2013). Legal and ethical issues for health professionals (3rd ed.). Burlington, MA: Jones & Bartlett Learning.

President’s Council on Bioethics. (2005). Taking care: Ethical caregiving in our aging society [PDF file]. Retrieved from https://repository.library.georgetown.edu/bitstream /handle/10822/559378/taking_care.pdf ?sequence=1& isAllowed=y

Pullman, D. (1998). The ethics of autonomy and dignity in long-term care. Canadian Journal on Aging, 18(1), 26–46.

Savishinsky, J. S. (1991). The ends of time: Life and work in a nursing home. New York, NY: Bergin & Garvey.

Smith, N. L., Kotthoff-Burrell, E., & Post, L. F. (2002). Protecting the patient’s voice on the team. In M. D. Mezey, C. K. Cassel, M. M. Bottrell, K. Hyer, J. L. Howe, & T. T. Fulmer (Eds.), Ethical patient care: A casebook for geriatric health care teams (pp. 83–101). Baltimore, MD: Johns Hopkins University Press.

Stanley, B., Sieber, J. E., & Melton, G. B. (2003). Empirical studies of ethical issues in research: A research agenda. In D. N. Bersoff (Ed.), Ethical conflicts in psychology (3rd ed., pp. 398–402). Washington, DC: American Psychological Association.

Thich Nhat Hanh. (1998). The heart of the Buddha’s teaching: Transforming suffering into peace, joy and liberation. New York, NY: Broadway.

Thich Nhat Hanh. (2001). Thich Nhat Hanh: Essential writings (R. Ellsberg, Ed.). New York, NY: Orbis.

Travelbee, J. (1971). Interpersonal aspects of nursing (2nd ed.). Philadelphia, PA: F. A. Davis.

Tzu, L. (1989). Tao te ching (J. C. H. Wu, Trans.). Boston, MA: Shambhala. (Original work published 1961)

University of New Mexico. (n.d.). Values history. Retrieved from https://hscethics.unm.edu/directives/values.html

U.S. Census Bureau. (2011). 2010 census briefs: Age and sex composition: 2010 [PDF file]. Retrieved from http:// www.census.gov/prod/cen2010/briefs/c2010br-03.pdf

Westrick, S. J. (2014). Essentials of nursing law and ethics (2nd ed.). Burlington, MA: Jones & Bartlett Learning.

205References

© Gajus/iStock/Getty Images

Ethical Issues in End-of-Life Nursing Care Janie B. Butts

A place to stay untouched by death does not exist. It does not exist in space, it does not exist in the

ocean, nor if you stay in the middle of a mountain.

—The Buddha

OBJECTIVES

After reading this chapter, the reader should be able to do the following:

1. Discuss the issues and forces surrounding death anxiety and the ideal death. 2. Describe a scenario of an imaginative dramatic rehearsal of one’s own death. 3. Explore the meaning of suffering. 4. Compare and contrast the different types of euthanasia: active, passive, voluntary, nonvoluntary,

and involuntary. 5. Identify the historical death practices and issues that led to the president’s commission on

defining death and the Uniform Determination of Death Act of 1981. 6. Define death as it is expressed in the Uniform Determination of Death Act of 1981. 7. Discuss the three standards of death that materialized since the president’s commission report

in 1981. 8. Contrast the definitions and clinical procedures between whole-brain death and higher-brain

death. 9. Delineate the strengths and weaknesses of the two types of advance directives and the nurse’s

role in communicating information about the types of advance directives to dying patients and their families, patients who are not necessarily dying, and the public.

10. Analyze the different types of surrogate decision-making standards and the circumstances in which each of these standards would be needed.

11. Discuss the seven principles of surrogate decision making for incompetent patients.

207

CHAPTER 9

12. Discuss the rationale for the decision-making standard used by the surrogate in the Terri Schiavo case.

13. Analyze the physician’s requirements by the American Medical Association for a patient whose treatment has been evaluated as medically futile.

14. Describe nursing care and support for a patient in palliative care. 15. Compare the three highlighted legal cases of Quinlan, Cruzan, and Schiavo in terms of

withholding life-sustaining treatment versus withdrawing life-sustaining treatment; withholding artificial nutrition and hydration versus withdrawing artificial nutrition and hydration; and letting go versus an intentional inducement of death.

16. Discuss the three conditions of the rule of double effect and the relationship of these conditions to the nurse’s role according to the explanatory statements in Provision 1 of the American Nurses Association Code of Ethics for Nurses with Interpretative Statements.

17. Contrast two end-of-life circumstances: terminal sedation and physician-assisted suicide. 18. Define palliative care. 19. Delineate the World Health Organization’s pain ladder for patients receiving palliative care. 20. Discuss nurses’ moral distress associated with caring for dying patients and their families. 21. Explore ways in which nurses could manage the spiritual care of dying patients and their

families.

▸ What Is Death? Contemporary ethical discussions about death and dying relate to philosophers at- tempting to answer captivating questions such as “What is a good death?” and “How will we all die?” In recent years, the focus has been on the challenging issues of readi- ness to die, acceptance of death, and knowing the right time to die (Battin, 1994; Connelly, 2003; Hester, 2003). Many questions about death are unanswerable, but individuals can develop a subjective notion about the mean- ing of death. For people to face death more peacefully, they need to come to their own understanding of death and beyond, if a be- yond exists, and develop a personal knowing of death’s connection. Nietzsche, a German philosopher, proposed that everyone needs a philosophy of life in relation to death. Victor Frankl credited Nietzsche with saying, “He who has a why to live can bear almost any how” (Wackernagel & Rieger, 1878, as cited in Frank & Anselmi, 2011, p. 15).

A long, variable history of physicians trying to determine if and at what point a person could be pronounced dead with neurological criteria generated the legal definition of death in 1981. This definition specified that one of two crite- ria, or both, must be met for a physician to pro- nounce a person dead, either whole-brain death or cessation of circulatory and respiratory func- tions (President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1981). Advancements in technology enabled physicians to pronounce death with a stand-alone criterion of whole- brain death, which is one of the two criteria of death. The other stand-alone criterion was ces- sation of circulatory and respiratory functions. Since then, with continued advancements in technology and an increased demand for organs and organ harvesting, ethicists began challeng- ing the legal definition of death, particularly death by neurological criteria (DNC) (Arbour, 2013). In this chapter, I will present the defini- tion of death and its scope as well as ethical and legal issues and decisions related to death.

OBJECTIVES (continued)

208 Chapter 9 Ethical Issues in End-of-Life Nursing Care

The Ideal Death Philosopher Andrew Lustig (2003) expressed his amazement at how bioethicists are en- gaging in passionate conversations about the meaning of death, yet personalizing the truth of our own mortality is difficult. As the title character in the nonfiction best seller Tuesdays with Morrie puts it, “Everyone knows they’re going to die, but nobody believes it” (Albom, 1997, p. 81). People “talk death” and romanti- cize death as if it were something ideal rather than a confrontation with mortality.

People use phrases such as “he passed away” to keep from saying the words “he died” or to avoid facing the apprehension associated with the reality of death (Spiegel, 1993). Yalom (1980) defined death anxiety as a “dread of death that resides in the uncon- scious, a dread that is formed early in life at a time prior to the development of precise con- ceptual formation, a dread that is terrible and inchoate and exists outside of language and image” (p. 189). Existential philosophers such as Kierkegaard, Heidegger, and Sartre empha- sized that it is in facing death and the possi- bility of nonbeing that persons come to know themselves best; in other words, a person first has to put death in perspective to understand any portion of life.

Yalom (1980) stated individuals avoid facing their own mortality in two ways, or defenses. The first defense against death is through immortality projects, where people throw themselves into commendable proj- ects, their work, or raising children. People thoroughly and completely engage in these activities and, by doing so, attempt to insulate themselves from death. The second defense is through dependence on a rescuer, believing another person can provide a sense of safety or protection from the fear of death.

Almost all people want to feel some sense of insulation from the fear of dying. Many times, patients look to nurses, physicians, and other healthcare professionals to fulfill a res- cuer role. In Spiegel’s (1993) large study about

death and dying, several hundred participants discussed their greatest fears about death.

Death signifies the end of a person’s living embodiment. Although death often remains a dark secret when people are still alive, one day when the time comes, they will wish for a good death. What exactly does that mean? When death is a known prognosis in a long-term ill- ness, a good death generally means that peo- ple do not allow medical care and treatment to control all their thoughts about their death; rather, they focus on the illness trajectory and the best palliative care they can receive.

Nurses and other healthcare professionals need to be advocates for those who are dying and think of dying as a process everyone faces. Brogan (2006) related a story of how the con- cept of the modern hospice movement was started in 1967 in London by a nurse, Dame Cicely Saunders, who many regard as the Flor- ence Nightingale of the hospice movement. In Saunders’s own words about death and dying, she stated the following:

I once asked a man who knew he was dying what he needed above all in those who were caring for him. He said, “For someone to look as if they are trying to understand me.” I know it is impossible to understand fully another person, but I never for- got that he did not ask for success but only that someone should care enough to try.  .  . . The suffering of the dying is “total pain” with physical, emotional, spiritual, and social ele- ments. (2006, p. 14)

Many people never get an opportunity to engage in death in an ideal manner. Instead, many people’s experience with death resembles Saunders’s suffering man. Nancy Dubler pre- sented what she called a cinematic myth of the good American death (see Ethical Reflection: Is This a Good Death or a Cinematic Myth?).

Lehto and Stein (2009) emphasized the significance of death anxiety and the role of

What Is Death? 209

nurses in everyday practice. Nurses need to take into account the possibility that some patients manifest ill effects or behaviors as a result of experiencing death anxiety. For most people, death is a mysterious event to be dis- covered rather than a comforting scene with the presence of family members and others hovering over them (Hester, 2003). Patients often find themselves, if at all conscious, con- nected to ventilators and other machines and intravenous lines and meters and receiving many medications. Technology and medical- ization have exacerbated the problem of deper- sonalization. Family members or significant others experience difficulty communicating with their loved one because of physical, tech- nological, and environmental barriers. During this perplexing time, the nursing staff could be a patient’s most reliable and consistent contact.

decisions. Sometimes, family members will find it difficult to discuss the uncertainties of treatments with their loved one. The difficulty could derive from something as simple as fam- ilies having less time to discuss these uncer- tainties when hospital policies restrict family visitations. Another reason is families do not feel they have the ability to influence decisions and do not want their loved one to know how inadequate they feel.

Whatever death a person is to experience— a good death; an anticipated death; a sud- den, unexpected death; or a painful, lingering death—most of the time, people do not have a choice in how they will die. Individuals, mean- while, need to shift the focus from thoughts of “that we die” toward “how we die” so people can place substantial thought on future deci- sions about end-of-life care and what might be best for them (Hester, 2010, p. 3).

The benefit of persons envisioning an ideal death and reflecting on it from time to time is to help them develop a sense of read- iness for a peaceful death. The American phi- losopher John Dewey (as cited in Fesmire, 2003) described a similar moral framework based on a person’s development of intelligent habits through an imaginative dramatic re- hearsal. Dewey discussed dramatic rehearsal as creative dialogue between two or more peo- ple in a particular scenario. In applying the imaginative dramatic rehearsal, a person can imagine one’s own death by reconstructing the ideal death scenario; on continued reflec- tion, they may later discover a rich, meaningful experience through this imagination (Fesmire, 2003; Hester, 2003). Persons who imagine an ideal death have a greater possibility of finding significance at the end of their lives and then, to some extent, shape their dying process.

The Concept of Human Suffering of Dying Patients Philosophers, professionals, researchers, and religious leaders agree that suffering is difficult

ETHICAL REFLEC TION: IS THIS A GOOD DEATH OR A CINEMATIC MY TH?

[The good death scene] includes the patient: lucid, composed, hungering for blissful release—and the family gathers in grief to mourn the passing of a beloved life. The murmurs of sad good-byes, the cadence of quiet tears shroud the scene in dignity. Unfortunately for many of us, our deaths will not be the spiritual, peaceful “passing” that we might envision or desire.

Hester, D. M. (2010). End of life care and pragmatic decision making: A bioethical perspective (pp. 3–4). New York, NY: Cambridge University Press.

When decisions about end of life need to be made, family members face uncertainty about the kind of treatment their loved one would want in particular circumstances. Even if patients have adequate decision-making capacity, they often want input from family members or significant others in treatment

210 Chapter 9 Ethical Issues in End-of-Life Nursing Care

to condense into one succinct definition. Hu- man suffering can be connected to many epi- sodes, contexts, and events, but a large part of the literature on suffering is associated with chronic disease and illness or dying patients and their families.

Hester (2010) emphasized that healthcare professionals should not reduce the concept of suffering to pain, explaining, “When we speak of suffering we mean far more than pain” (p. 18). Kahn and Steeves (1986) stated that an indi- vidual could experience suffering following a sense of threat to the being, the self, and ex- istence. Similarly, Eric Cassell (2004) empha- sized that suffering involves the whole person and body but pain and suffering are separate phenomena. After several years of studying suffering, Eriksson (1997) defined suffering as a perceived undesirable inner experience that could threaten the whole existence of be- ing, yet it is a necessary element of life, as are joy and happiness. If others show compassion toward a suffering person, one could develop a more meaningful suffering existence.

Stan van Hooft (2000, 2006) was at the forefront of studying the Aristotelian frame- work of the human soul as a way to explain human suffering. Aristotle contended that a soul consists of a being with inseparable phys- ical and spiritual interconnections. All parts of the whole being have one purpose, which Aristotle labeled as achieving eudaimonia (happiness, human fulfillment, and flourish- ing). If one part cannot reach this would-be goal, the whole being suffers because the mind and body are inseparable. As such, van Hooft (2000) concluded that suffering is the opposite of flourishing.

To differentiate pain from suffering, van Hooft (2000) stated that because pain is a hurtful and unpleasant sensation with varying intensities and degrees, it can interfere with in- dividuals’ achievement of a flourishing life and therefore will lead to suffering. Pain is a result of a malady or an illness of the vegetative or bodily state; pain can steal joy, contentment, and happiness and can cause individuals to

suffer and lose a passion for life. Suffering sat- urates the whole body in all its four parts.

Catherine Garrett’s (2004) life work on the differentiation of pain from suffering contrib- utes to the meaning of suffering and describes the suffering person as a tormented being. Suffering is an inevitable but unwelcome com- ponent of experiencing life. Suffering is not only subjective; it is also objective in the sense that a suffering person’s symptoms can become recognizable signs to others. Examples include a person who is experiencing death and dying, a chronic illness, or chronic violence.

Responsibility of Nurses Toward Suffering Patients How an individual chooses to understand human suffering is personal. Nurses need to interpret the suffering of their patients in an attempt to alleviate or minimize pain or dis- tress. Examples from official nursing docu- ments in the box Ethical Reflection: Nurses’ Moral Obligation Toward Human Suffering include statements about the need for nurses to reduce and alleviate suffering in patients.

Cassell (2004) made a connection between human suffering on the individual level and a person’s need for compassion. Nurses’ mind- fulness of this connection can enrich their comprehension of patients’ suffering. Nurses receive information on patients from nursing assessments, interviews, and interpersonal in- teractions, but one way for nurses to begin the journey of comprehending others’ suffering is through the context of having compassion. Nurses generally use strategies such as em- pathy, compassion, and attentive listening to console suffering patients.

Euthanasia The thought of extended agony and suffering prior to death provokes a sense of dread in most people, but keeping emotional, financial, and social burdens to a minimum and avoiding

What Is Death? 211

suffering are not always possible (Munson, 2004). Many people go to extremes to avoid suffering, as O’Rourke (2002) emphasized: “Suffering in all its forms is an evil, and every reasonable effort should be made to relieve it” (p. 221). However, an untold number of peo- ple die every day with tremendous suffering and pain. For many years, people have debated whether to legalize euthanasia, a process often referred to as mercy killing. Dr. Jack Kevorkian was one to argue strongly for euthanasia when patients were in a terminal state of dying (see the box Legal Perspective: Prison for Dr. Jack Kevorkian).

major types of euthanasia (Munson, 2004). Active euthanasia is the intentional and pur- poseful act of causing the immediate death of another person, whether or not the dying per- son requested it; examples include a person with a terminal illness or a painful disease or a person who cannot be cured. Kevorkian did carry out the physician-assisted suicide pro- cedure appropriately for many of his patients, but he carried out these actions in states with- out physician-assisted suicide sanctions. The action that sent him to prison was the active euthanasia of Thomas Youk on national televi- sion; this action was consistent with the defini- tion of active euthanasia, not physician-assisted suicide. Passive euthanasia, or letting go, is the intentional withholding or withdrawing of medical or life-sustaining treatments. A debate continues in the United States whether there is a real moral difference between active and passive euthanasia, and although withdraw- ing or withholding medical or life-sustaining treatment has become widely accepted today, active euthanasia has not (Brannigan & Boss, 2001; Jonsen, Veatch, & Walters, 1998).

Other ways euthanasia has been described are voluntary, nonvoluntary, and involuntary. Voluntary euthanasia occurs when patients with decision-making capacity authorize phy- sicians to take their lives. Voluntary euthana- sia has become associated most with the term physician-assisted suicide, which is defined as the taking of one’s own life with a lethal dose of physician-ordered medication. Seven states— Washington, Oregon, California, Colorado, Montana, Vermont, and Hawaii—and Wash- ington, DC, have laws approving the practice of physician-assisted suicide. Other states have bills up for vote or in dispute. Nonvoluntary euthanasia occurs when persons are not able to give express consent to end their lives and are unaware they are going to be euthanized. For example, a physician could euthanize a patient when a family member who serves as a decision maker gives consent. Involuntary euthanasia means a person’s consent may be possible but is not sought and a physician could euthanize

ETHICAL REFLEC TION: NURSES’ MORAL OBLIGATION TOWARD HUMAN SUFFERING

Nursing obligations and responsibilities are published in several official nursing documents. The following comments represent only two of these documents:

■ ANA Code of Ethics for Nurses with Interpretive Statements (2015): “Nursing encompasses the protection, promotion, and restoration of health and well-being; the prevention of illness and injury; and the alleviation of suffering in the care of individuals, families, groups, communities, and populations” (p. vii).

■ The ICN Code of Ethics for Nurses (2012): “Nurses have four fundamental responsibilities: to promote health, to prevent illness, to restore health and to alleviate suffering” (p. 1). See also Appendix B.

Data from International Council of Nurses (2012); American Nurses Association (2015).

Euthanasia, which has come to mean a good or painless death, has developed a strong appeal in recent years, partly because of the political muddle on the right-to-die issues and the association of these issues with the misery and suffering of dying patients. There are two

212 Chapter 9 Ethical Issues in End-of-Life Nursing Care

someone without express consent. An example of involuntary euthanasia is the euthanizing of a death-row inmate.

▸ Salvageability and Unsalvageability Principle

In her book The Least Worst Death, Battin (1994) argued that euthanasia is a morally right and humane act on the grounds of mercy, au- tonomy, and justice. The principle of mercy

(mercy killing) includes two obligations: the duty not to cause further pain and suffering and the duty to act to end existing pain or suffering. The principle of autonomy involves the idea that health professionals ought to respect a per- son’s right to choose a suitable course of medical treatment. The principle of justice is based on how unsalvageable the providers of care believe a permanently unconscious person to be.

Based on this salvageability/unsalvage- ability principle, however, a healthcare pro- vider could justify performing euthanasia on still-competent but dying patients if they were regarded as unsalvageable (Battin, 1994). It is in knowing where to draw the legal and moral line with this principle that providers and fam- ilies may face difficult decisions. Any decisions must be carefully examined, especially when the acts may go beyond the meaning of the principle of unsalvageability. There are many opponents who say this euthanasia argument is a slippery slope. Battin (1994), who is a sup- porter of euthanasia for the unsalvageable suf- fering person, opposes the notion of a slippery slope euthanasia argument.

Historical Influences on the Definition of Death In Europe in the 18th and 19th centuries, there was widespread fear of being buried alive be- cause of inadequate methods for detecting when a person was dead; sometimes, when a body was exhumed, claw marks were found on the inside of the coffin lid. There are docu- mented accounts of people being buried alive, but some stories became embellished over time. As a result, many people came to believe exaggerated accounts of premature burial.

Whether or not stories were embellished, great fear persisted during that era, possibly for good reason. Out of fear of being buried alive, the great composer Frédéric Chopin left a request in his will to be dissected after his death and before being buried to make certain he was dead (Bondeson, 2001).

LEGAL PERSPEC TIVE: PRISON FOR DR. JACK KEVORKIAN

Until his conviction on a second-degree murder charge for which he served 8 years in prison, from 1999 to 2007, Dr. Jack Kevorkian assisted with more than 100 suicides or mercy killings (Frontline, 2014). From 1990 to 1998, at the request of suffering patients from various parts of the United States, he helped them end their lives; he was nicknamed Doctor Death because of his euthanasia practices. Kevorkian was charged on several occasions but was later acquitted, prior to his conviction for euthanizing Thomas Youk. On November 22, 1998, 15 million viewers of the CBS program 60 Minutes watched Dr. Kevorkian give a lethal injection to Youk, aged 52 years, who was dying with Lou Gehrig’s disease. After this program aired, strong debates surfaced in the media and in healthcare, political, and legal systems worldwide. Dr. Kevorkian died in June 2011 with his long-held belief that people have a right to die and to request death (Schneider, 2011). His actions on that day went far beyond that of physician-assisted suicide to one of active euthanasia.

Data from Frontline. (1998). The Kevorkian verdict: The chronology of Dr. Jack Kevorkian’s life and assisted suicide campaign. Retrieved from http://www.pbs.org/wgbh/pages/frontline/kevorkian /chronology.html

Salvageability and Unsalvageability Principle 213

When laws preventing premature burials were enacted, the owners of funeral homes went to the extreme of having their staff mon- itor dead bodies during the wait time. Before the law had taken effect, special signaling de- vices were installed from inside the coffin to the outside world to help those buried alive to communicate with others above the ground.

For hundreds of years, when a person be- came unconscious, physicians or others would palpate for a pulse, listen for breath sounds with their ears, look for condensation on an object when it was held close to the body’s nose, and check for fixed and dilated pupils (Mappes & DeGrazia, 2001). The invention of the stetho- scope in 1819 led to reduced fear because phy- sicians could listen with greater certainty for a heartbeat through a magnified listening device placed on the chest of the body.

A breakthrough in technology occurred at the beginning of the 20th century when Willem Einthoven, a Dutch physician, discov- ered the existence of electrical properties of the heart with his invention of the first elec- trocardiograph (EKG) in 1903 (Benjamin, 2003). The EKG provided sensitive informa- tion about whether the heart was functioning. From the middle of the 19th century to the middle of the 20th century, a consensus existed about determination of death; that is, when the heart stopped beating and the person stopped breathing, the person had ceased to live.

Society began to change its perceptions of death as technology became integrated into medicine. The 1950s and 1960s brought more uncertainty involving death as physicians kept patients alive in the absence of a natural heart- beat. When transplants were being performed in the 1960s and 1970s, it became apparent that a diagnosis of death would not necessarily depend on the absence of a heartbeat and res- pirations. Rather, in the future, the definition of death would need to include brain death criteria.

In 1968, an ad hoc committee at Harvard Medical School attempted to redefine death not only in terms of heart–lung cessation; it

added reliable brain death criteria for venti- lator-dependent patients with no brain func- tion (described by committee members as patients in an irreversible coma) (Benjamin, 2003). Back then, this definition led to con- fusion about the term brain death and to a widespread misconception about whether the human organism—the person—was actually dead. Somehow, brain death, which technically means death of the brain, came to mean death of a human organism or person. Because of the way some individuals perceived the mean- ing of the term brain death, they translated the 1968 definition to mean that two kinds of death existed for human organisms: the traditional heart–lung death and now a new kind of death called brain death. Benjamin emphasized that ethicists and physicians had not given sufficient attention to clarifying this term before the article was published in 1968.

The Definition of Death Ethicists, physicians, and others continued intense debates about death. It was not until 1981 that members of the President’s Commis- sion for the Study of Ethical Problems in Med- icine and Biomedical and Behavioral Research wrote in the document Defining Death that a body was an organism as a whole:

Three organs—the heart, lungs, and brain—assume special significance— because their interrelationship is very close and the irreversible cessation of any one very quickly stops the other two and consequently halts the inte- grated functioning of the organism as a whole. Because they were easily measured, circulation and respira- tion were traditionally the basic “vital signs.” But breathing and heartbeat are not life itself. They are simply used as signs—as one window for viewing a deeper and more complex reality: a triangle of interrelated sys- tems with the brain at its apex. (p. 33)

214 Chapter 9 Ethical Issues in End-of-Life Nursing Care

The commission members sanctioned a definition of death in 1981 and recom- mended its adoption. Debates continue con- cerning which criteria belong in the definition of death and, more specifically, death of the brain. Since this 1981 definition was adopted, criteria for death of the brain have been ad- opted by every state.

Some physicians and bioethicists have recognized three standards for death (DeGra- zia, 2011). With whole-brain death, the patient may survive physically for an indeterminate duration with a mechanical ventilator. Some patients may seemingly have complete loss of brain function only to have the electrical activity of the brain reappear later, even if it is minimal, which makes the UDDA whole- brain death criteria difficult to use for pro- nouncing a person dead (Munson, 2004). This event is peculiar, as specified by Veatch (2003): “A brain-dead patient on a ventilator does, of course, make for an unusual corpse. On the ventilator, he is respiring and his heart is beat- ing. But if his whole brain is dead, the law in most jurisdictions says that the patient is de- ceased” (p. 38).

At the point when the person has met brain death defined by UDDA criteria and is pronounced dead, mechanical ventilation and medical treatment can be discontinued (Benjamin, 2003). Because of the variation in the clinical evaluation for brain death from institution to institution, the American Academy of Neurology offered uniform clin- ical evaluation guidelines for determining brain death (Wijdicks, Varelas, Gronseth, & Greer, 2010).

An electroencephalogram (EEG) is a me- ter used to measure the electrical activity of the brain (Munson, 2004). If a person is on life-sustaining support while in the process of being pronounced dead, such as in whole- brain death, an EEG is needed in addition to the guidelines listed in the clinical evaluation guidelines. One EEG is usually sufficient for a physician to pronounce someone brain dead in the United States (Wijdicks et  al., 2010), but some jurisdictions require that two EEGs, performed 24 hours apart, show no brain ac- tivity before physicians can disconnect a per- son from life-sustaining support. Physicians and nurses must also make certain that loss of brain function is not caused by mind-altering medications, hypoglycemia, hyponatremia, or any other cause.

LEGAL PERSPEC TIVE: DEATH LEGALLY DEFINED IN 1981

The members of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research defined death in accordance with accepted medical standards. This definition was enacted as the Uniform Determination of Death Act (UDDA) of 1981. A person who is dead is one who has sustained either of the following:

■ Irreversible cessation of circulatory and respiratory functions

■ Irreversible cessation of all functions of the entire brain, including the brain stem

Data from President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1981). Defining death: Medical, legal, & ethical issues in the determination of death. Washington, DC: Government Printing Office, p. 73. Retrieved from http://kie.georgetown.edu/nrcbl/documents/pcemr /definingdeath.pdf; and Youngner, S. J., & Arnold, R. M. (2001). Philosophical debates about the defintion of death: Who cares? Journal of Medicine and Philosophy, 26(5), 527–537.

Veatch (2003) extended the debate on the definition of death by posing an intriguing ques- tion regarding the loss of full moral standing for human beings. This statement triggers the ques- tion as to when humans should be treated as full members of the human community. Almost ev- ery person has reconciled the notion that some persons have full moral standing and others do not, but there is continued controversy about when full moral standing ceases to exist and what characteristics qualify for the cessation of full moral standing. Losing full moral standing is equivalent to ceasing to exist.

Salvageability and Unsalvageability Principle 215

With higher-brain death, or loss of higher- brain function, the patient lives in a persistent vegetative state indefinitely but without the need for mechanical ventilation. A person with higher-brain death may have permanently lost some, but not all, functions, which has been the cause of enormous dispute. Even very min- imal brain functioning, such as limited reflexes in the brain stem, is cause for a patient to be diagnosed with higher-brain death (Veatch, 2003). Questions persist as to when a person should or should not be treated as one who has full moral standing in society.

Society, physicians, and nurses have diffi- culty defining death by the UDDA definition, especially when they try to incorporate the standards of cardiopulmonary death, whole- brain death, or higher-brain death. Benja- min (2003) posed this question for people to consider: “Exactly what is it that ceases to exist when we say someone like you or me is dead?” (p. 197). No definite criteria exist on

higher-brain death, but in 1994 a task force published general guidelines for a persistent vegetative state (Multi-Society Task Force on Persistent Vegetative State, 1994). Benjamin and Veatch affirmed there will be no answers to many questions until ethicists and others can come to a general consensus about what life is, when life begins, when life ends, and who does and does not have full moral standing.

▸ Decisions About Death and Dying

Advance Directives An advance directive is “a written expres- sion of a person’s wishes about medical care, especially care during a terminal or critical ill- ness” (Veatch, 2003, p. 119). When individuals lose control over their lives, they may also lose their decision-making capacity, and advance directives become instructions about their fu- ture health care for others to follow. Advance directives can be self-written instructions or prepared by someone else as instructed by the patient. Under the federal Patient Self- Determination Act of 1990, states, under man- dated authority, have developed laws to protect the rights of individuals making decisions about end-of-life and medical care. (See Appendix C for an example of a complete legal packet for a healthcare advance directive.) Critical issues that need to be addressed in any advance di- rective include specific treatments to be refused or administered; the time the directive needs to take effect; specific hospitals and physicians to be used; which lawyer, if any, should be con- sulted; and specific other consultations, such as an ethics team, a chaplain, or a neighbor. There are two types of advance directives: living will and durable power of attorney.

A living will is a formal legal document that provides written directions concerning what medical care is to be provided in specific circumstances (Beauchamp & Childress, 2013;

ETHICAL REFLEC TION: THREE STANDARDS FOR DEATH

■ Cardiopulmonary death: A person is dead by cardiopulmonary criteria when the cessation of breathing and heartbeat is irreversible.

■ Whole-brain death or permanent brain failure: Death is regarded as the irreversible cessation of all brain functions, with no electrical activity in the brain, including the brain stem.

■ Higher-brain death: Human death is considered the irreversible cessation of the capacity for consciousness, which implies that the person is dead even though the continual function of the brain stem regulates breathing and heartbeat (such as in a persistent vegetative state).

Reproduced from Degrazia, D. (2007/2011). The definition of death (updated Fall 2011). Stanford encyclopedia of philosophy. Retrieved from http://plato.stanford.edu/archives/fall2011 /entries/death-definition/

216 Chapter 9 Ethical Issues in End-of-Life Nursing Care

Devettere, 2000). The living will gained recog- nition in the 1960s, but the Karen Ann Quin- lan case in the 1970s brought public attention to the living will and subsequently prompted legalization of the document. Although living wills were a good beginning, today they are not completely adequate. Problems can arise when living wills consist of vague language, contain only instructions for unwanted treatments, lack a description of legal penalties for those people who choose to ignore the directives of living wills, and are legally questionable as to their authenticity.

The durable power of attorney is a legal written directive in which a designated person can make either general or specific healthcare and medical decisions for a patient. The dura- ble power of attorney has the most strength for facilitating healthcare decisions; however, even with a power of attorney, families and healthcare professionals may experience fear about making the wrong decisions regarding an incapacitated patient (Beauchamp & Childress, 2013).

In addition to the weaknesses previously discussed about advance directives, other weaknesses may arise; for example, very few people ever complete an advance directive, a surrogate decision maker may be unavailable for decision making, and healthcare profes- sionals cannot overturn advance directives if a decision needs to be made in the best interest of a patient. The existence of advance direc- tives can be a source of comfort for patients and families as long as they realize their lim- itations and scope. Ensuring the validity of the advance directive, realizing the importance of preserving patients from unwanted intrusive interventions, and respecting the possibility that patients may change their minds about their expressed written wishes are several ways that nurses must demonstrate benevolence to- ward patients and their families.

Surrogate Decision Makers When patients can no longer make competent decisions, families may experience difficulty

in trying to determine a progressive right course of action. The ideal situation is for pa- tients to be autonomous decision makers, but when autonomy is no longer possible, decision making falls to a surrogate (Beauchamp & Childress, 2013). The surrogate decision maker, often known as a proxy, is an indi- vidual who acts on behalf of a patient and either is chosen by the patient, such as a fam- ily member; is court appointed; or has other authority to make decisions. Family members serving as proxies are generally referred to as surrogates.

Advances in healthcare technology and life-sustaining treatments precipitated the de- velopment of the surrogate decision-maker role, as it is known today. Decisions about treatment options and the motives behind these decisions may be complex and destruc- tive. Before the surrogate makes a decision, there needs to be appropriate dialogue among the physicians, the nurses, and the surrogate (Emanuel, Danis, Pearlman, & Singer, 1995). On behalf of the patient, surrogates endure an uncomfortable multistage decision- making process for gathering information and en- gaging the patient (when possible), extended family members, physicians, nurses, and other healthcare professionals. During this process, the surrogate decision makers consider their own subjective views, the perceptions of oth- ers on the status of the patient, the medical evidence, and patient preferences (Buckley & Abell, 2009).

Surrogate decision makers sometimes have difficulty distinguishing between their own emotions and the feelings of others, or they may have monetary motives for making certain decisions. It is the responsibility of nurses and physicians to be alert to these kinds of motives or concerns and look for therapeu- tic ways to deliberate with the surrogate. As Olick (2001) stated, “In many respects, [surro- gate decision making principles] may be said to be a part of the legacy of Karen Ann Quin- lan and her family” (p. 30). Of interest too is the influence these principles had on the Terri

Decisions About Death and Dying 217

Schiavo case and her family, which is discussed later in this chapter.

There are three types of surrogate decision-making standards. The substituted judgment standard is used to guide medical decisions for formerly competent patients who no longer have any decision-making capacity (Beauchamp & Childress, 2013). This standard is based on the assumption that incompetent patients have the exact same rights as compe- tent patients to make judgments about their health care (Buchanan & Brock, 1990). Surro- gates make medical treatment decisions based on what they believe patients would have de- cided if they were still competent and able to express their wishes. In making decisions, sur- rogates use their understanding of the patients’ previous overt or implied expressions of their beliefs and values (Veatch, 2003). Before los- ing competency, the patient could have either explicitly informed the surrogate of treatment wishes by oral or written instruction or im- plicitly made treatment wishes clear through informal conversations.

Many times, when more than one sibling is involved in the decisions regarding the care of a dying parent, misunderstandings occur and angry feelings over practical, legal, and financial matters become apparent. Siblings will be affected uniquely by their parent’s death, depending on several factors: the type of relationship that exists between each sib- ling and the parent; if and how each sibling has experienced death in the past; each sib- ling’s present life situation and stressors; any past grudges toward siblings by other siblings or other people; and current sibling relation- ships. One sibling usually takes charge, or the siblings designate one sibling to be the speaker for the group. Even when one sibling is em- powered, however, the others usually desire an equal voice in the decision-making process. This may be a frustrating process for every- one if the siblings cannot agree. Dialogue is important so that involved people can come to an understanding and avoid further misun- derstandings and pain.

The pure autonomy standard is based on a decision that was made by an autonomous patient while competent but who has later be- come incompetent. In this case, the decision is usually upheld based on the principle of autonomy extended (Beauchamp & Childress, 2013; Veatch, 2003). The best interest stan- dard is an evaluation of what is good for an incompetent patient in particular healthcare situations when the patient has never been competent, such as in the case of an infant or mentally retarded adult (Beauchamp & Chil- dress, 2013). The surrogate attempts to decide what is best for the incompetent patient based on the patient’s dignity and worth as a hu- man being without taking into consideration the patient’s concept of what is good or bad. The surrogate will have no evidence or basis for determining the incompetent patient’s de- sires or what is best for that patient, but the surrogate evaluates the benefits and burdens for available treatment options. Because the best interest standard is patient centered, the surrogate must make decisions based on cur- rent and future interests (Buchanan & Brock, 1990). These decisions inevitably involve muddy, subjective quality-of-life judgments, such as appraising the incompetent patient’s simple life pleasures and contentment, sense of social worth, degree of pain and suffering experienced, and the benefits and costs of treatment.

ETHICAL REFLEC TION: PATIENT SELF-DETERMINATION

According to the ANA Code of Ethics for Nurses with Interpretive Statements (2015) Provision 1.4, nurses have a moral obligation to respect human dignity and certain patient rights, especially patient self-determination. What are some strategies the nurse can implement to ensure the respect of human dignity and self-determination for an incompetent patient?

218 Chapter 9 Ethical Issues in End-of-Life Nursing Care

▸ Medical Futility Humpty Dumpty sat on a wall, Humpty Dumpty had a great fall; All the King’s horses, And all the King’s men, Could not put Humpty Dumpty together again.

—Lewis Carroll, Adventures of Alice in Wonderland and Through the Looking Glass

I propose an analogy between the meaning of medical futility and the life of Humpty Dumpty and his broken body after the fall (FIGURE 9-1).

The term futile means pointless or mean- ingless events or objects (O’Rourke, 2002). Medical futility is defined as “the unaccept- ably low chance of achieving a therapeutic benefit for the patient” (Schneiderman, 1994, para. 10). Questions to ask regarding futility as related to bioethics are as follows:

■ What is at stake? ■ What weight does the term futility carry? ■ Is the meaning and weight of the term

futility appreciated from the broader do- minion of bioethics?

■ What are healthcare professionals’ ethical obligations insofar as thinking that a med- ical intervention is clearly futile?

■ Who makes the final decision? Who has the power?

■ How can hospitals and other healthcare agencies incorporate a reasonable, fair, objective, and clear policy on futility?

Schneiderman (1994) linked his defini- tion of medical futility to the whole person, the wholeness similar to the way Aristotle spoke of a human being with four insepara- ble parts. In other words, a suffering person will seek a cure, healing, or care from a pro- vider to become as whole as possible again. In weighing the concept of futility, the nurse must understand how integral the suffering– healing– provider relationship is to the health process and the goals of medicine and nursing. The provider of care is responsible for admin- istering medical treatments and interventions to benefit the patient as a whole and not have just a small effect on some part of the body or an organ. Integrated throughout this process is the necessity of the patient to comprehend and appreciate the benefits of medical treatment. To comprehend these benefits, the person must at least be partially conscious; patients who are in a persistent vegetative state cannot possibly appreciate the beneficial effects of the treatment. The mere effect is of no benefit if the effect does not help a patient achieve some degree of life goals or human fulfillment, or the type of telos emphasized by Aristotle.

Medical futility goes back in history as long as can be remembered. In ancient Greece, there was an acceptance of physicians refus- ing to treat people who were overwrought with disease. The futility movement became more important in the 1970s, when medical technology brought about extraordinary life support and life-extending measures. As phy- sicians began asking “What is a good death?” and “When do we let go?” medical futility emerged as an important concept. Throughout the 1970s and 1980s, philosophers and physi- cians strongly debated the concept of futility in an effort to define the term and create guide- lines for putting it into practice. In the 1990s,

FIGURE 9-1 Humpty Dumpty Cartoon Source: Andy Marlette Cartoons

Medical Futility 219

definitions began to shift from the theme of blaming providers of care for failures to a focus on more quantitative and qualitative values of treatments with low probabilities of benefits in the past. Landmark legal cases on medical fu- tility include the cases of Helga Wanglie, In the Matter of Baby K, and Gilgunn v. Massachusetts General Hospital.

Healthcare professionals and most other people have accepted and ethically justified withholding and withdrawing treatments deemed futile or extraordinary, but this accep- tance does not mean that withholding or with- drawing treatment is universally accepted. The case of Terri Schiavo (Schiavo and Schindler v. Schiavo) was not primarily about medical futility; rather, it was about Michael Schiavo’s legal, not ethical, responsibility for carrying out Terri’s express and previous verbal wishes of not wanting to stay alive in her current cir- cumstances. Terri Schiavo, with all evidential

information set forth by the physician who per- formed the autopsy, met the legal definition of a persistent vegetative state and therefore was a medically futile case regarding treatment.

When a healthcare provider cannot have reasonable hope that a treatment will benefit a terminally ill person, the medical treatment is considered futile. Treatments often consid- ered medically futile include cardiopulmonary resuscitation (CPR), medications, mechan- ical ventilation, artificial feeding and fluids, hemodialysis, chemotherapy, and other life- sustaining technologies. When surrogates are the spokespersons for patients, one of the nurse’s responsibilities is to make sure commu- nication remains open between the healthcare team and the decision maker for the family. Everyone needs to have a chance to express feelings and concerns about treatment options that are viewed as medically futile (Ladd, Pas- querella, & Smith, 2002).

LEGAL PERSPEC TIVE: LANDMARK LEGAL CASES INVOLVING MEDICAL FUTILIT Y DECISIONS

1988: The Case of Helga Wanglie An elderly woman was aged 85 years when she fractured her hip after slipping on a rug, after which she developed severe ventilator-dependent pneumonia. She was later diagnosed with persistent vegetative state (PVS; higher-brain death) secondary to hypoxic-ischemic neuropathy and was ventilator dependent secondary to chronic lung disease. (Patients with PVS generally do not require mechanical ventilation because the brain stem is intact. Her dependency on the ventilator related strictly to her chronic lung disease.) Physicians at two facilities agreed that treatment would be futile, but the family members wanted her to be treated and kept alive as long as possible. They believed the physicians were playing God, but they did agree to a do-not-resuscitate physician order with much trepidation. After an intense legal battle, on July 1, 1991, the court authorized Mr. Wanglie, the patient’s husband, to be the surrogate decision maker for Mrs. Wanglie. However, on July 4, 1991, only 3 days after the final court decision, Mrs. Wanglie died.

1993: In the Matter of Baby K In 1992, Baby K was born with anencephaly, that is, with a brain stem but no capacity for a conscious life. Statistically, the baby was predicted not to be able to survive more than a few days to months. Physicians and ethics committee members argued not to keep Baby K alive on ventilator support because of medical futility, but the mother insisted that Baby K be kept alive because she believed all human life is precious and to be preserved. The federal court supported the mother’s claim only if someone would assume the amount of the mother’s bills for care of Baby K. The mother found monetary support, and Baby K lived for 2 years in a nursing home on ventilator support.

220 Chapter 9 Ethical Issues in End-of-Life Nursing Care

ETHICAL REFLEC TION: DEVELOPING YOUR BELIEFS AND OPINIONS ABOUT MEDICAL FUTILIT Y

Following are questions to ponder as you develop your beliefs and opinions about the medical futility of a patient, such as one in the last stages of metastasized cancer:

■ What ethical theory, approach, or principle provides the rationale for your beliefs on autonomy and medical futility? Explain.

■ How far does one go with patient autonomy? ■ Do you believe patient autonomy should have limits? ■ Should patient autonomy (and surrogate autonomy) be unlimited, no matter what the physician

believes should and should not be done? ■ Would the healthcare system’s financial burden be a factor for setting limits on patient autonomy

(and surrogate autonomy) in your personal opinion or as a societal stance? ■ Do patients or families have a moral right to insist on medical treatment when two or more

physicians and hospitals deem it futile? Give your rationale based on your ethical theory, approach, or principle.

■ Do providers of care have a moral duty to provide medically futile treatment at the family’s request, just because the family wants it?

1995: Gilgunn v. Massachusetts General Hospital In a rare early case of a court supporting a physician’s claim of medical futility, a jury, after the fact, found that cardiopulmonary resuscitation need not be provided to a patient dying with multiple organ- system failure, as in the case of Ms. Gilgunn, aged 71 years, who was comatose. The family had sought treatment, but the physician objected. The jury’s decision was the result of a retrospective evaluation of the medical decision. The jury’s decision for stopping futile treatment was unique at the time.

Medical futility cannot be circumscribed within clear boundaries. There are usually questionable gray areas when debating issues of futility; even Humpty Dumpty’s case was questionable. Remember, it was all the King’s horses and all the King’s men who could not put Humpty Dumpty together again. However, no men or horses from another King’s court tried to put Humpty Dumpty together again, contrary to what occurs in real medical futility cases, because a second opinion is an essential component in declaring medical futility.

Grayness will always exist because health- care providers and other professionals attempt to embrace the patient’s hope and consider a patient’s values and feelings, even when the pa- tient is cognitively impaired and will not have feelings. However, nurses acknowledge that all

human beings have limits. The human compo- nent exists on both sides of the futility–value issue, but gray areas that blur the boundaries will always exist. Patients, families, judges, patient advocacy groups, the media, those in- volved with sociopolitical issues, and the pub- lic will challenge these gray boundaries time after time.

▸ Palliative Care Palliative care consists of comfort care mea- sures that patients may request instead of aggressive medical treatments when their condition is terminal. Nurses are probably the most active of all healthcare profession- als in meeting the palliative needs of dying

Palliative Care 221

patients. Palliative care has become an orga- nized movement through official associations and organizations since the 1990s. The World Health Organization (WHO, 2018a) defined palliative care as “an approach that im- proves the quality of life of patients and their families facing the problem associated with life- threatening illness, through the preven- tion and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physi- cal, psychosocial, and spiritual” (para. 1).

Understanding what quality of life means to the dying patient is an important part of end-of-life care for nurses, and no matter what stage of dying the patient is experiencing, the main goals of palliative care are to prevent and relieve suffering and allow for the best care possible for patients and families.

When nurses provide palliative care, they do not hasten or prolong death for these pa- tients; rather, they try to provide patients with relief from pain and suffering and help them maintain dignity in the dying experience. Pal- liative treatment may include a patient’s and family’s choices to forgo, withhold, or with- draw treatment. Some patients will have a do not resuscitate (DNR) order, which is a writ- ten physician’s order placed in a patient’s chart that says hospital personnel are not to carry out any type of CPR or other resuscitation measures. Each hospital and agency has spe- cific policies and procedures for how a DNR order is to be written and followed. A critical ethical violation to informed consent may oc- cur if a physician writes a DNR order on a pa- tient’s record without discussing the order and decision with the patient, family members, or surrogate (O’Rourke, 2002). A DNR physician order needs to be justified by one of three rea- sons: no medical benefit can come from CPR, a person has a very poor quality of life before CPR, and a person’s quality of life after CPR is anticipated to be very poor (Mappes & DeGra- zia, 2001).

Unofficial—and unauthorized—slow codes have been practiced in the past and can be

described as going through the motions or as giving half-hearted CPR to a patient whose condition has been deemed futile. At one time, nurses initiated slow codes when a physician had not yet written the DNR order of a termi- nally ill patient. However, a slow code is an un- ethical and illegal practice, and physicians and nurses should never initiate them. Slow codes are not recognized as a legal procedure.

The Right to Die and the Right to Refuse Treatment The right to die is a patient’s choice, based on the principle of autonomy. Well-informed pa- tients with decision-making capacity have a right to refuse or forgo recommended treat- ments in an attempt to avoid a long period of suffering during the dying process. Right to die means a person has an autonomous right to refuse life-sustaining or life-extending treat- ment measures. Most of the time there are no ethical or legal ramifications if a person de- cides to forgo treatments; the courts generally uphold the right of competent patients to re- fuse treatment (Jonsen, Siegler, & Winslade, 2006; Mappes & DeGrazia, 2001). Neverthe- less, healthcare professionals need to make certain the patient’s decision is truly autono- mous and not coerced. Healthcare profession- als may find it difficult to accept a competent patient’s decision to forgo treatment.

Sometimes, in a patient’s mind, the bur- dens of medical treatments outweigh the ben- efits (O’Rourke, 2002). Perceived burden is a concern for nurses, physicians, and patients because physical pain and emotional suffering from treatments or the prolongation and dread of carrying out treatments may be too much to bear. Other views of burden consist of the economic, social, and spiritual burdens on a patient and family. Whether or not at the end of life, adult autonomous patients with compe- tent decision-making capacity may refuse med- ical treatments at any time in life and may base their refusal on religious or cultural beliefs.

222 Chapter 9 Ethical Issues in End-of-Life Nursing Care

Withholding and Withdrawing Life-Sustaining Treatment Withholding and withdrawing treatment is the forgoing of life-sustaining treatment that the patient does not desire because of either a per- ceived disproportionate burden on the patient or family members or other reasons. Notable legal decisions led to many questions regard- ing the right to die and the right to withhold and withdraw life-sustaining treatments. Three landmark legal cases about withholding and withdrawing treatments, particularly for people in a persistent vegetative state, are presented in this section (Brannigan & Boss, 2001; Jonsen et  al., 1998; U.S. District Court for the Middle District of Florida Tampa Division, 2005).

A somewhat more recent case was that of Terri Schiavo, who died on March 31, 2005. There were a total of 21 legal suits, but the last few cases involved her husband Michael’s re- quest to have her feeding tube discontinued, which would stop the artificial nutrition and hydration. Terri’s parents fought this request. By Florida law, Michael Schiavo as a spouse and guardian had a legal right to serve as a surrogate decision maker for Terri.

Substituted judgment became the eth- ical and legal standard, with guardianship as the focal point, and it was a critical factor in

decision making regarding Terri Schiavo’s care and outcome in light of no advance directive. Surrogates must make unbiased, substituted judgments based on an understanding of what patients would decide for themselves, not the values of the surrogate. The court obtained documented evidence from Michael Schiavo and other people that Terri had stated she did not want to live in a condition in which she would be a burden to anyone else. This evi- dence served as the basis for many of the court denials to the Schindlers, the parents.

Nurses need to give compassionate and excellent care to patients. No matter what the decision will be, family members and patients need to feel a sense of confidence that nurses will maintain moral sensitivity with a course of right action. Nurses ethically support the provision of compassionate and dignified end- of-life care as long as they do not have the sole intention of ending a person’s life (ANA, 2015).

A special statement concerning the Terri Schiavo case was released to the press by the ANA on March 23, 2005, which upheld the decision for the right of the patient or sur- rogate to choose forgoing artificial nutrition and hydration. The ANA president (Barbara Blakeney) made a statement announcing that the ANA will continue to uphold the rights of patients. Even if incapacitated, the patient has

ETHICAL REFLEC TION: GUIDELINES FOR A CLINICAL DIAGNOSIS OF PERSISTENT VEGETATIVE STATE

■ No awareness of self or environment and an inability to interact with others ■ No sustained, reproducible, purposeful, or voluntary responses to visual, auditory, tactile, or noxious

stimuli ■ No language comprehension or expression ■ Intermittent wakefulness exhibited by the presence of sleep–wake cycles ■ Preserved autonomic functions to permit survival with medical and nursing care ■ Incontinence—bladder and bowel ■ Variable degrees of spinal reflexes and cranial-nerve reflexes, such as pupillary, oculocephalic,

corneal, vestibulo-ocular, and gag

Data from Multi-Society Task Force on Persistent Vegetative State. (1994). Medical aspects of the persistent vegetative state (p. 1500). New England Journal of Medicine, 330, 1499–1508.

Palliative Care 223

LEGAL PERSPEC TIVE: TWO LANDMARK LEGAL CASES ABOUT WITHHOLDING AND WITHDRAWING TREATMENTS AND PERSISTENT VEGETATIVE STATE

1975: Karen Ann Quinlan The case of Karen Ann Quinlan in 1975 led to her parents receiving the right to have Karen Ann’s mechanical ventilator discontinued (Jonsen et al., 1998; LEXIS-NEXIS, 1999). Karen Ann, who was aged 21 years, attended a party and ingested diazepam, dextropropoxyphene, and alcohol and then lapsed into a coma. She was placed on a ventilator, and consequently, her parents were involved in legal battles for several years to have Karen Ann removed from the ventilator. Physicians would not remove her from the ventilator because they could not establish Harvard Criteria for brain death. Finally, the U.S. Supreme Court district of New Jersey ordered the physicians to unplug the ventilator. After it was unplugged, Karen Ann breathed without the help of the ventilator and continued living for 10 years; her death was a result of pneumonia and its complications. The legacy of Quinlan’s case included the following: (1) contributing to the definition of the term persistent vegetative state; (2) setting precedence for parents (or legal guardians) to have a right to choose; (3) the formation of ethics committees in most healthcare settings; and (4) the creation and implementation of the advance directive.

1983: Nancy Cruzan Nancy Cruzan, aged 25 years, was in a motor vehicle accident in 1983. She sustained severe injuries that led to a complete loss of consciousness and, later, a persistent vegetative state with continuous artificial nutrition and hydration. Nancy’s parents and co-guardians made several pleas during the next few years to the Director of the Missouri Department of Health to have her feeding tube removed on the basis that there was no chance for a return of cognitive capacity. The Director declined to accommodate the Cruzans’ request. The case then progressed to the next level where the Supreme Court of Missouri upheld the State of Missouri’s decision to decline the Cruzans’ wishes on the basis that they needed clear and convincing evidence of the patient’s wishes to have the life support removed. The U. S. Supreme Court later upheld the Supreme Court of Missouri’s ruling. In September 1990, the State of Missouri withdrew its case. With no opposition, a county judge ruled that the life support on Nancy Cruzan could be removed. The county judge issued the order to remove life support on December 14, 1990. Nancy was age 33 when she died on December 26, 1990, only a few days after the court’s final decision. The judge based the decision on a previous comment by Nancy, who had stated to the housekeeper that she would not want to live in this type of condition. Of particular interest is Nancy Cruzan’s grave marker. The family members, adapting their idea from a political cartoon about the case, had three dates etched on the grave marker: one date reflects her birth, one reflects her death at the time of the accident, and one reflects her actual physical death (Fine, 2005). The grave marker is slightly confusing based on the meanings of the terms persistent vegetative state and brain death. Nancy’s persistent vegetative state never equated to the definition of brain death, as the grave marker implies. The etching on the grave marker shows the following:

Born July 20, 1957 Departed January 11, 1983 At Peace December 26, 1990

Significant to this case was the decisions. At the ruling of the Nancy Cruzan case, the judges of the Supreme Court of Missouri established three conditions for withdrawing treatments, including artificial nutrition and hydration: (1) the patient has a right to refuse medical treatment; (2) artificial feeding

224 Chapter 9 Ethical Issues in End-of-Life Nursing Care

a right to have designated a surrogate or spec- ified whether to continue medical treatment. The ANA contends that nurses are obligated to assist their patients and maintain their dignity. One such case regarding rights was in the Terri Schiavo case. Blakeney stated that Terri Schi- avo had a right to self-determination or sur- rogate determination. She was in a persistent vegetative state for years, and evidence existed that she had expressed she did not want her life sustained by artificial means.

In 2017, the ANA published an updated version of its position statement on forgoing

nutrition and hydration. Previous ANA posi- tion statements on forgoing nutrition and hy- dration were in 1992 and 2011. The following statement is in the newly revised ANA (2017) position statement: “When a patient at the end of life or the patient’s surrogate has made the decision to forgo nutrition and/or hydration, the nurse continues to ensure the provision of high quality care, minimizing discomfort and promoting dignity.” The ANA emphasized that physiological nurses are responsible for under- standing the physiologic aspects surrounding the clinical options.

constitutes medical treatment; and (3) when the patient is mentally incompetent, each state must document clear and convincing evidence that the patient’s desires had been for discontinuance of medical treatment. Another important component that came from this case was the use of advance directives.

Sources: Cornell University Law School, Legal Information Institute. (n.d.). Cruzan by Cruzan v. Director, Missouri Department of Health [497 U.S. 261; No. 88-1503]. Retrieved from http://www.law.cornell.edu/supremecourt/text/497/261; and Jonsen, A. R., Veatch, R. M., & Walters, L. (1998). Source book in bioethics. Washington, DC: Georgetown University Press.

LEGAL PERSPEC TIVE: LEGAL FAC TS IN THE THERESA “ TERRI” MARIE SCHIAVO CASE

In Theresa Marie Schindler Schiavo and Robert ex relatione [on behalf of ] Mary Schindler (plaintiffs) v. Michael Schiavo, Judge George W. Greer, and The Hospice of the Florida Suncoast, Inc. (defendants) [Civ. Act. No. 8:05-CV-530-T-27TBM]

Major Final Court Rulings ■ March 21, 2005: A federal court order denied the injunction relief sought by the Schindlers,

and the court refused to compel Theresa Schiavo to undergo surgery for reinsertion of the feeding tube.

■ March 24, 2005: The second federal court denied a motion by the Schindlers for a temporary restraining order against Michael Schiavo and the hospice regarding an alleged violation of Terri’s right to artificial nutrition and hydration based on the Americans with Disabilities Act (ADA). The courts ruled that Terri’s rights based on the ADA were not violated.

■ March 24, 2005: The U.S. Supreme Court denied the application by the Schindlers for a stay of enforcement of the Florida judgment.

■ March 25, 2005: The U.S. Court of Appeals 11th Court District denied an appeal by the Schindlers for a rehearing.

(continues)

Palliative Care 225

LEGAL PERSPEC TIVE: LEGAL FAC TS IN THE THERESA “ TERRI” MARIE SCHIAVO CASE

Alleviation of Pain and Suffering in the Dying Patient The degree of quality of life contributes to the choices patients make during the end-of-life process. Attempting to relieve pain and suf- fering is a primary responsibility for nurses and providers of care, which makes the whole

arena of palliative care an ethical concern. Pa- tients fear the consequences of disease—pain, suffering, and the process of dying. Most of the time it is the nurse who administers the pain medication and evaluates a patient’s condi- tion between and during pain medication in- jections. In an updated position statement on nurses’ roles and responsibilities in providing

History and Facts of the Case In 1990, Terri Schiavo’s husband, Michael, found Terri unresponsive in the couple’s home. Florida physicians affirmed that Terri, at age 26, had experienced prolonged cerebral hypoxia after an acute cardiac arrest. Physicians determined that a severely low potassium level, which was secondary to an eating disorder, brought on her cardiac arrest. Her condition was determined consistent with the diagnosis of persistent vegetative state because of the brain insult. In a 1992 medical malpractice suit against her fertility obstetrician, Terri Schiavo was awarded $750,000, which was placed in a trust fund for her future medical care. Michael Schiavo was awarded $300,000 (Cerminara, 2005). In 1992, the Schindlers (Terri’s parents) and Michael became alienated over the management of Terri’s therapy and the money awarded to the Schiavos. In February 1993, the Schindlers unsuccessfully demanded a share of Michael’s money from the malpractice settlement.

The first lawsuit filed against a family member was initiated in 1993 by the Schindlers in an attempt to have Michael removed as Terri’s guardian, but the judge dismissed the case. Rehabilitation efforts continued for several years without success. Michael first petitioned the court in 1998 to have Terri’s feeding tube removed and artificial nutrition and hydration discontinued, which was vehemently opposed by the Schindlers. Before her 1990 event, Michael testified that Terri had told him that “If I ever have to be a burden to anybody, I don’t want to live like that” (Lynne, 2005). Terri made similar statements about her wishes to other people, as evidenced by court-documented material. Judge Greer at the 6th Judicial Circuit Court in Clearwater, Florida, avowed there was clear and convincing evidence of Terri’s wishes.

From 1993 to 2005, there were 21 lawsuits and appeals. The majority of the lawsuits were filed after 1998, and most of them upheld Michael’s initial contention that he was attempting to carry out Terri’s wishes. During the appeals, Terri’s feeding tube was removed on three occasions; on the first two occasions, the feeding tube was reinserted and artificial nutrition and hydration were resumed.

Thirteen days after the third and final removal of her feeding tube, Terri died on March 31, 2005, at the age of 41 years. The ethics and legality of removing the feeding tube were scrutinized until her death through lawsuits; political and media statements; actions of the U.S. Congress; and pleas from high-ranking public figures, such as Pope John Paul II.

(continued)

Reproduced from U.S. District Court for the Middle District of Florida Tampa Division. (2005, March 21). Theresa Marie Schindler Schiavo and ex relations Robert Schlinder and Mary Schindler (plaintiffs) v. Michael Schiavo, Judge George W. Greer, and The Hospice of the Florida Suncoast, Inc. (defendants). (Civ. Act. No. 8:05-CV-530-T-27TBM). Retrieved from http: //fl1.findlaw.com/news.findlaw.com/hdocs/docs/schiavo/hus32105opp.pdf; Cerminara, K. L., & Goodman, K. (2006). Theresa Marie Schiavo’s long road to peace. NOVA: Southeastern University Shephard Broad of Law Center. Death Studies, 30, 101–112. Key events in the case of Theresa Marie Schiavo. University of Miami Ethics. Retrieved from http://papers.ssrn.com/sol3/papers .cfm?abstract_id=782444; and Lynne, D. (2005). Life and death tug of war—The whole Terri Schiavo story: 15-year saga of brain-injured woman no clear cut, right-to-die case. WorldNetDaily. Retrieved from http://www.wnd.com/2005/03/29516/

226 Chapter 9 Ethical Issues in End-of-Life Nursing Care

care and support at the end of life, the ANA (2016) emphasized that nurses “are responsi- ble for recognizing patients’ symptoms, tak- ing measures within their scope of practice to administer medications, providing other measures for symptom alleviation, and collab- orating with other professionals to optimize patients’ comfort and families’ understanding and adaptation” (para. 1).

▸ Rule of Double Effect According to Cavanaugh (2006), the rule of double effect is based on an individual’s reasoning that an act causing good and evil is permitted when the act meets the following conditions:

1. The act, considered independently of its evil effect, is not in itself wrong.

2. The agent intends the good and does not intend the evil either as an end or as a means.

3. The agent has proportionately grave reasons for acting, addressing his relevant obligations, comparing the consequences, and, considering the necessity of the evil, exercising due care to eliminate or mitigate it. (p. 36)

Some historians of ethics have attributed the double-effect reasoning to St. Thomas Aqui- nas’s writing about a person’s self-defense in a homicide, and other historians have not. To- day’s double-effect reasoning is inclusive of actions that could cause harm, which is a fore- seen but inevitable outcome. The use of the double-effect reasoning is an area of substan- tial concern when the healthcare professional sees some good in the action yet foresees with certainty that there will be bad in the action.

When the rule of double effect is applied, nurses need to be aware that the hastening of death must be a possible foreseen and inevita- ble but unintended effect. In the Code of Eth- ics for Nurses with Interpretive Statements, the ANA (2015) states, “The nurse should provide

interventions to relieve pain and other symp- toms in the dying patient consistent with pallia- tive care practice standards and may not act with the sole intent to end life” (Provision 1.4, p. 3).

Nurses may have conflicting moral values concerning the use of high doses of opiate- containing drugs, such as morphine sulfate, or even opiate-synthetic medications. In times when nurses feel uncomfortable, they need to explore their attitudes and opinions with their supervisor and, when appropriate, in clinical team meetings. Individually evaluating each patient and circumstance is essential.

Terminal Sedation Terminal sedation is an accepted practice in the United States and many other countries. Quill (2001) defined terminal sedation as

ETHICAL REFLEC TION: EXAMPLES OF DOUBLE-EFFEC T REASONING CONDITIONS

Condition 1 An example of the first condition of the rule of double effect is applied when a nurse administers a medication that is neither good nor bad.

Condition 2 The second condition involves the intention of a nurse or physician. An example is a nurse’s intent to relieve pain by administering a medication and not for the patient to be compromised in any way.

Condition 3 The third condition is that the bad effect cannot be the means to the intended good effect; for instance, a nurse cannot administer an opiate-containing or other type of medication to produce the harmful bad effect, such as respiration cessation, to achieve the intended good effect, which in this case is pain relief.

Rule of Double Effect 227

a last resort “when a suffering patient is se- dated to unconsciousness, usually through the ongoing administration of barbiturates or benzodiazepines. The patient then dies of de- hydration, starvation, or some other interven- ing complication, as all other life-sustaining interventions are withheld” (p. 181). Terminal sedation is different than usual palliative seda- tion; in terminal sedation the healthcare team discontinues medications and feeding tubes. Some people think terminal sedation hastens death, but Ira Byock stated that terminal seda- tion is used only in the last stages of life when medications and nutrition and hydration do not prolong life (as cited in Kingsbury, 2008).

When the word terminal is used, there is an understanding among the healthcare team and family members that the outcome, and possibly a desired outcome, is death (Sugar- man, 2000). The ANA (2015) does not di- rectly address terminal sedation in the Code of Ethics for Nurses with Interpretive Statements, but it does address nurses’ obligations to give compassionate care at the end of life and not have a sole intent of ending a person’s life. Understanding the moral and ethical implica- tions will guide nurses in their individualized direction.

Physician-Assisted Suicide Society has reacted with everything from moral outrage to social acceptance with regard to physician-assisted suicide. Four states in the United States have made physician-assisted suicide legal: Oregon in 1994, Washington in 2008, Montana in 2009, and Vermont in 2013. State congressional members have introduced physician-assisted suicide bills in a number of other states, two of them being Connecticut and Hawaii (Death with Dignity, 2018). With certain restrictions, patients who are near death may obtain prescriptions to end their lives in a dignified way. Sugarman (2000) de- fined physician-assisted suicide as “the act of providing a lethal dose of medication for the

patient to self-administer” (p. 213). According to Kopala and Kennedy (1998), physician- assisted suicide must meet three conditions in accordance with the ANA:

1. You [the nurse] must know the per- son intends to end his or her life.

2. You [the nurse] must make the means to commit suicide available to the person.

3. The person must then end his or her own life. (p. 19)

During a 20-year dispute over euthanasia practices, under certain guidelines, physicians could practice euthanasia in the Nether- lands. In February 2002, the Dutch passed a law that permitted voluntary euthanasia and physician-assisted suicide. In the discussions of euthanasia in the United States, the scope has been limited to only physician-assisted suicide, whereas in the Netherlands, the dis- cussion has a much wider perspective.

Special guidelines relating to the Death with Dignity Act in Oregon were written by the Oregon Nurses Association for nurses who care for patients choosing physician-assisted suicide (as cited in Kopala & Kennedy, 1998, and Ladd et al., 2002). The guidelines include maintaining support, comfort, and confiden- tiality; discussing end-of-life options with the patient and family; and being present for the patient’s self-administration of medications and death. Nurses may not inject the med- ications themselves, breach confidentiality, subject others to any type of judgmental com- ments or statements about the patient, or re- fuse to provide care to the patient.

▸ Rational Suicide The idea of saving people versus allowing people to die or commit suicide is at the very essence of one of the most debated and controversial dilemmas today. As long as there is difficulty in determining rationality in suicide, this controversy

228 Chapter 9 Ethical Issues in End-of-Life Nursing Care

will remain. Moral progress in nursing necessitates that nurses ponder these ethical uncertainties . . . with patients who are contemplating rational suicide. Meanwhile, nurses should never be caught off-guard in relation to the ethical and political changes in health care for fear of losing their power and voice.

—Reproduced from K. L. Rich and J. B. Butts, Rational Suicide: Uncertain

Moral Ground (2004), p. 277

Rational suicide is a self-slaying based on reasoned choice and is categorized as volun- tary, active euthanasia. Siegel (1986) stated that the person who is contemplating ratio- nal suicide has a realistic assessment of life circumstances, is free from severe emotional distress, and has a motivation that would seem understandable to most uninvolved people in the person’s community.

Morally accepting a person’s act of com- mitting rational suicide seems outrageous to most people, and the very thought of it weighs heavily on their hearts. Should people criticize others for making a choice of rational suicide? More and more people view rational suicide as an acceptable alternative to life, especially when faced with unbearable pain, suffering, or loneliness (O’Rourke, 2002). However, the terms rational and suicide seem to contradict each other (Engelhardt, 1986; Finnerty, 1987).

David Peretz (as cited in O’Rourke, 2002), a noted psychiatrist and suicidologist, offered his interpretation of why rational suicides seem more accepted in society today. He be- lieves that, increasingly, people are so over- whelmed with stress related to fears associated with life and dying that they begin searching for new ways to cope. Through searching, they often develop an interest in ways to die better, such as dying a good death, dying with dignity, and exercising their right to die.

Peretz stated that this motivation is un- ethical, dangerous, and harmful because it leads a person to a false sense of omnipotence. Two other elements may contribute to rational

suicide but are also unrealistic and unethi- cal, according to Peretz. One element is that people who are advocates of rational suicide believe strongly in personal autonomy as the goal of human life; therefore, if a person can- not have complete personal autonomy, life is not worth living. The other element is an act of self-destruction, which has the potential to mythologize rational suicide. Peretz stated that by mythologizing an object, it is given false power. Advocates of rational suicide promote self-destruction as a way to realize a false sense of freedom from serious human problems, such as physical suffering, loneliness, or frailty.

For nurses to endorse any suicide seems contradictory to good practice because, tradi- tionally, nurses and mental health profession- als have intervened to prevent suicide. Many times, cultural, religious, and personal beliefs guide nurses in how they respond to patients who are thinking about suicide. Does a nurse have the right to try to stop a person from committing rational suicide, in other words, to act in the best interest of a patient? Or is a nurse supposed to support a person’s autono- mous decision to commit rational suicide, even when a decision is morally and religiously in- compatible with the nurse’s perspective? If the nurse knows of the plan for rational suicide, would care toward that patient be obligatory? Would nurses be obligated to render care de- spite their own value conflicts? What actions could the nurse take at this point?

According to Rich and Butts (2004), no clear answers exist to this ethical dilemma, but interventions become unique to each situation. Interventions may include everything from providing information regarding Compas- sion & Choices (a right-to-die organization) to answering questions about lethal injections. Nurses need to consider autonomy and benef- icence when deciding on interventions for per- sons who are planning rational suicide. Nurses are closely involved with more end-of-life eth- ics as the issue of voluntary, active euthanasia is becoming increasingly prevalent.

Rational Suicide 229

▸ Care for Dying Patients Nurses must first sort out their own feelings about euthanasia and dying before they pro- vide appropriate moral guidance and direction to patients and families. The sights, sounds, and smells of death can be an emotionally draining experience for nurses, but nurses must meet the needs of patients and families. Every day, nurses face disturbing moral con- flicts and distress, such as whether they should keep giving a continuous morphine sulfate in- fusion to a dying patient for comfort in light of the risk of depressed respirations or whether they should assist in withdrawing and with- holding artificial nutrition and fluids or other life-sustaining interventions. When nurses experience personal value and professional moral distress in decision making, they may find themselves on uncertain moral ground. The substance of decision making regarding ethical issues and the experience of moral dis- tress needs documenting so as not to lose the richness of the narratives and the degree to which these diagnoses are used.

Barbara Couden (2002), a registered nurse, wrote a beautiful and poignant description of

her emotional experiences with loss and death in intensive care, stating that, at times, she just wanted to run away. She portrayed her expe- riences of physical and emotional exhaustion; periods of fatigue, guilt, and sometimes relief when death finally came; the smell of death on her clothes and wetness on her face from crying families pressing against her face; tearfulness and sadness; and her own intense feelings of grief and loss. Couden experienced immeasur- able unexpressed grief and unresolved personal losses, along with the losses of her patients, until she had no emotions left to express toward her patients and no energy left to spend on them.

After Couden (2002) sought ways to deal with her crisis, she discovered three important aspects of her emotional work. First, she had to face her own grief and loss, which includes continuous expressions of loss through tears and discussions. Second, she had to find ways to deal with her own intense feelings of grief and loss before she “could dare to give them [her feelings] utterance” (p. 42). She cries and expresses her own grief with patients, and as she does, the environment becomes a unique place for her and her patients as they exchange their emotions. She finds ways to pamper

ETHICAL REFLEC TION: SOMETIMES I WANT TO RUN

Barbara A. Couden wrote the following:

Sometimes I want to run. It’s work not to recoil from the rawness of life in those rooms. It is probably easier to behave as a starchy, mechanical nurse who staves off discomfort with a cheerful cliché. However, people deserve to experience hospitalization, grief, or even dying at its very best. To provide less isn’t care at all. So I give my open heart and plunge into their circumstances, even though really I’m no one special to them—just there by default. In return, they honor me with the privilege of sharing their pain, struggle, and the richness of life, death, and love. In some way, we each live on in the other’s memory: endeared by shared suffering, strivings to nurture hope, and our individual attempts to love. So there are nights that I reflect on my heartfelt efforts, smell death on my clothes, and feel dampness where the tears of grieving loved ones have pressed against my face. Sometimes it seems that my role as a nurse is to absorb the feelings of others: pain, sadness, and loss. I’m sitting up in bed tonight, waiting for mine to dissipate.

Reproduced from Couden, B. A. (2002). “Sometimes I want to run”: A nurse reflects on loss in the intensive care unit. Journal of Loss and Trauma, 7(1), pp. 41–42. Reprinted by permission of the publisher Taylor and Francis Ltd., http: //www.tandfonline.com

230 Chapter 9 Ethical Issues in End-of-Life Nursing Care

herself. Her third aspect of emotional work involves her mannerisms toward patients and feeling good about the way she responds to her patients. Couden confirmed her feelings about the way she responds to her patients when she saw her therapist emotionally moved by her own stories.

Relationships with patients are at the heart of nursing ethics. Nursing at its best is good for the souls of the patient and nurse; Wright (2006) stated, “For the heart is the seat of the soul, and when we nurse another, we nurse a soul too. Soulful work requires soulful individ- uals and communities” (p. 23). Without this soulful work, patients will feel disconnected. Relationships can become quite complex be- cause of the accompanied interrelational expe- riences and emotions (Maeve, 1998).

Most nurses share in patients’ emotional experiences of pain, suffering, and joy and do not just give superficial care and then forget about it. Providing care to their dying patients becomes an essential component of nurses’ own lives, and the stories they remember about their patients become interwoven into their own life stories. Maeve (1998) studied nine nurses who worked with suffering and dying patients. As she listened to the nurses’ stories, she realized that moral issues about practice and relationships were dominant where suf- fering and dying patients were concerned.

Three major themes were identified from the study (Maeve, 1998). One was “temper- ing involvement” (p. 1138), which means that nurses had a dilemma or conflict about becom- ing involved—how much involvement; setting limits; setting boundaries to distinguish their lives from their patients’ lives; and becoming embodied, such as when nurses may actu- ally live in the experience with their patients. The second theme, “doing the right thing/the good thing” (p. 1139), involved education, ex- perience, courage, moral dilemmas, and past regrets for a few of their performances or deci- sions with patients. The third theme, “cleaning up” (p. 1140), marked the end of the involve- ment with the patient. During this time, the

nurse needs to reflect on experiences and clean up grief.

In one Japanese study of 160 nurses, Koni- shi, Davis, and Aiba (2002) studied withdrawal of artificial food and fluid from terminally ill patients. The majority of the nurses supported this act only under two conditions: if the patient requested withdrawal of artificial food and flu- ids and if the act relieved the patient’s suffering. Comfort for the patient was of great concern by nurses. One nurse in the study stated, “[Ar- tificial food and fluid] only prolongs the pa- tient’s suffering. When withdrawn, the patient showed peace on the face. I have seen such pa- tients so many times” (p. 14). In the same study, another nurse who was experiencing moral conflict with a decision to withdraw artificial food and fluid stated, “Withdrawal is killing and cruel. I feel guilty” (p. 14).

Other end-of-life issues may be reasons for moral conflicts as well. Researchers con- ducted a literature review on the topic of ethi- cal issues in terms of how nurses perceive their care of dying patients (Georges & Grypdonck, 2002). A dearth of systematic research exists on the topic of nurses’ moral conflicts and dis- tress. Some of the moral dilemmas particularly critical to end-of-life care found by Georges and Grypdonck were as follows:

■ Communicating truthfully with patients about death because they were fearful of destroying all hope in the patient and family

■ Managing pain symptoms because of fear of hastening death

■ Feeling forced to collaborate with other health team members about medical treatments that, in the nurses’ opinion, are futile or too burdensome

■ Feeling insecure and not adequately in- formed about reasons for treatment

■ Trying to maintain their own moral in- tegrity throughout relationships with pa- tients, families, and coworkers because of the feeling that they are forced to betray their own moral values

Care for Dying Patients 231

Although a nurse has an obligation to provide compassionate and palliative care, the nurse has a right to withdraw from treating and caring for a dying patient as long as an- other nurse has assumed the care. When care is such that the nurse perceives it to be violat- ing his or her personal and professional mo- rality and values, the professional nurse must pursue alternative approaches to care.

Nursing care for dying patients needs to be enriched over time because new nurses and nurses who do not routinely care for dying pa- tients are not automatically skilled in this type of care. Nurses must acquire expertise and skills in end-of-life care, as in any other area of practice. As we will see, compassionate care is an essential component of nursing care for dying patients.

Compassionate Nurses and Dying Patients Nurses find themselves on uncertain moral ground when they attempt to sustain dying pa- tients, but they must be honest with patients and give sufficient information concerning advance directives and medical treatment op- tions. However, the most important aspect is to offer support to dying patients by relating to their fear of death and alleviating pain and suf- fering. Family members need to support their loved one, and they can often learn support strategies from talking with nurses and ob- serving how nurses interact with the patient. When dying patients experience the compas- sionate acts of nurses and family members, death can be a positive experience for them. Nurses must remember that little things make a big difference in the care of dying patients. Medical treatments aimed at relieving pain and suffering can coexist with palliative care, and nurses’ compassionate acts are essential to this cohesive coexistence (Ciccarello, 2003). One particular compassionate act is for nurses to teach individuals and patients in community

and hospital settings about treatment deci- sions at the end of life, such as life-sustaining treatments and palliative care with symptom management. Nurses can teach patients about advance directives and surrogate decision making. The case of Terri Schiavo could pos- sibly have a positive influence on the need for understanding and having advance directives.

Physical and Emotional Pain Management Understanding and upholding aggressive pain management precepts may be the most challenging moral dilemma that nurses face when caring for dying patients. The lack of understanding regarding the issues and fears of patient addiction or death causes nurses and physicians to undertreat pain and suffer- ing in many cases. Miller, Miller, and Jolley (2001) emphasized the importance of nurses applying three basic precepts when controlling pain: (1) nurses and physicians need to follow the WHO’s (2018b) “pain ladder” protocol for palliative pain management (see the follow- ing section); (2) nurses and physicians need to treat pain early because, when pain is out of control, it is more difficult to treat; and (3)  nurses and physicians need to explain to terminally ill patients that addiction should not be feared and that dying patients rarely develop an addiction to properly administered pain medications.

▸ Types of Pain Miller et al. (2001) described two major types of pain: nociceptive and neuropathic. Noci- ceptive pain involving tissue damage occurs with two types of pain: somatic (musculo- skeletal pain) and visceral (organ pain—the most common type of pain). After nurses have performed a thorough pain assessment, the WHO’s (2018b) pain ladder is an excellent

232 Chapter 9 Ethical Issues in End-of-Life Nursing Care

approach for providers of care. It is a step-by- step approach to managing pain with palliative care. At the first sign of a patient’s pain, nurses should administer oral non-opioid medica- tions or adjuvant therapy, as ordered by the primary care provider. The next progressive step involves use of opioids, such as codeine, for mild to moderate pain, in addition to inter- ventions in the first step. The last step involves use of strong opioids, such as morphine sul- fate, for moderate to severe pain, in addition to interventions in the previous steps of the ladder.

Moral conflicts among patients and fam- ily members can arise about pain relief and suffering. Sharing in each patient’s experience of pain and emotional suffering will provide a better experience for nurses and their patients during the death process.

Spiritual Considerations Spirituality is one of the most important as- pects of end-of-life nursing care, but often, nurses feel helpless when it comes to provid- ing the right type of spiritual care for their patients. Meaningful experiences, especially at the end of life, are important for nurses in their care of patients because nurses feel that they touch patients’ lives in some way through generous or compassionate acts. One such way may be the facilitation of spirituality. Spiritual- ity has become more essential to nursing care since it has been included in the definition of palliative care. Most Americans believe end- of-life spiritual care is an important part of the dying process, and at the same time, they be- lieve nurses and others do not effectively pro- vide spiritual care.

Spirituality is a deeply personal and inte- gral part of a person’s life (Taylor, 2002). Sev- eral definitions of spirituality exist in nursing (Dossey & Guzzetta, 2000; Narayanasamy, 1999; Taylor, 2002). Spirituality, as defined by Dossey and Guzzetta (2000), is “a unify- ing force of a person; the essence of being that

permeates all of life and is manifested in one’s being, knowing, and doing; the interconnect- edness with self, others, nature, and God/Life Force/Absolute/Transcendent” (p. 7).

Taylor (2003) studied the expectations of patients and family members regarding spir- itual needs and care from nurses. In-depth, tape-recorded interviews were conducted with 28 adult patients who had cancer and their family caregivers. Six categories, and consequently specific nursing interventions, are listed in the priority of responses; they are “kindness and respect,” “talking and listening,” “prayer,” “connecting,” “quality temporal nurs- ing care,” and “mobilizing religious or spiritual resources” (p. 588).

The category with the most responses was kindness and respect, and a few responses regarding this theme included “just be nice,” “giving loving care,” and “a smile does a lot” (Taylor, 2003, pp. 587–588). For the next cat- egory, talking and listening, the responses var- ied widely because some patients enjoyed the superficial chatter, whereas others were pleased about nurses sharing their own deep religious experiences as comforting measures. Another category, prayer and the nurse’s offering to pray with patients, varied widely in responses according to individualized beliefs. The cate- gory of connecting relates to certain charac- teristics, such as nurses being authentic and genuine, having physical presence, and having symmetry with patients. (Symmetry with pa- tients means patients want to have a sense of working with nurses in a notion of friendship.) Giving quality temporal nursing care, another category, relates to the mechanisms that sup- port the spirit of the person, such as keeping the room clean and not allowing the patient to suffer. The last category is mobilizing religious or spiritual resources. Nurses can facilitate mobilization by consulting chaplains and hav- ing Bibles or other religious materials in the room available as needed.

There are no completely right ways to help a person die because dying processes are

Types of Pain 233

individual experiences (Benner, Kerchner, Corless, & Davies, 2003). Nursing care de- pends on each situation. Stories told by family members and dying patients are particularly significant to the understanding of death and are central to paying proper tribute to human passage. As Benner and colleagues (2003)

pointed out, “death forever changes the world of those who experience the loss of the person dying” (p. 558). The involvement of nurses in decisions about death becomes more complex every day as more technology emerges in the dying process. Family members and patients must be involved with all ethical decisions.

KEY POINTS

■ Most of the time, whatever death a person is to experience—a good death; an anticipated death; a sudden, unexpected death; or a painful, lingering death—people do not have a choice of how they will die.

■ Suffering is something that all human beings and every living thing experiences, and because of the multidimensional aspects of humans, suffering affects every part of people’s lives—physical, mental, emotional, social, and spiritual.

■ Types of euthanasia include active, passive, voluntary, nonvoluntary, and involuntary. Physician-assisted suicide is a type of voluntary euthanasia.

■ Death was legally defined in 1981 in the Uniform Determination of Death Act. ■ Three standards for death—cardiopulmonary, whole brain, and higher brain—emerged as a result

of the landmark legal decisions associated with these terms. ■ Nurses need to develop awareness and knowledge of the types of advance directives to provide

education to patients. ■ The surrogate decision maker, often known as a proxy, is an individual who acts on behalf of a

patient and is chosen by the patient, such as a family member; is court appointed; or has another type of authority to make decisions.

■ The surrogate decision-making standards include the substituted judgment standard, pure autonomy standard, principle of autonomy extended standard, and best interest standard.

■ Before physicians consider a patient’s treatment as medically futile, they must first consider the American Medical Association’s guidelines for designating a patient as medically futile and then attempt to answer questions such as “How far does one go with patient autonomy?” and “What is the potential outcome of treatments for the patient?”

■ Palliative care and terminal sedation are accepted practices in most countries, including the United States.

■ The landmark legal cases of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo brought recognition to the concepts of patient (or surrogate) self-determination as related to the right to die or refuse treatment; withholding and withdrawing life-sustaining treatment, such as artificial nutrition and hydration and mechanical ventilation; and persistent vegetative state and whole-brain death.

■ Oregon, Washington, Montana, and Vermont have legally approved physician-assisted suicide. ■ Death and dying can be a more positive experience if nurses give compassionate care to patients

and families during the dying process. ■ The ANA Code of Ethics for Nurses with Interpretative Statements emphasizes aggressive pain control

for suffering patients at the end of life, but nurses should never have the sole intention of ending a patient’s life.

■ The ANA supports nurses in their attempts to relieve patients’ pain, even when the interventions lead to risks of hastening death.

234 Chapter 9 Ethical Issues in End-of-Life Nursing Care

References Cerminara, K. L. (2005). Theresa Marie Schiavo’s long

road to peace. Death Studies, 30(2), 101–112. Ciccarello, G. P. (2003). Strategies to improve end-of-life

care in the intensive care unit. Dimensions of Critical Care Nursing, 22(5), 216–222.

Connelly, R. (2003). Living with death: The meaning of acceptance. Journal of Humanistic Psychology, 43(1), 45–63.

Cornell University Law School, Legal Information Insti- tute. (n.d.). Cruzan by Cruzan v. Director, Missouri Department of Health [497 U.S. 261]. Retrieved from http://www.law.cornell.edu/supremecourt/text /497/261

Couden, B. A. (2002). “Sometimes I want to run”: A nurse reflects on loss in the intensive care unit. Journal of Loss and Trauma, 7(1), 35–45.

Death with Dignity. (2018). Death with dignity around the U.S. Retrieved from https://www.deathwithdignity .org/take-action/

DeGrazia, D. (2011). The definition of death. Retrieved from http://plato.stanford.edu/archives/fall2011/entries /death-definition

Devettere, R. J. (2000). Practical decision making in health care ethics: Cases and concepts (2nd ed.). Washington, DC: Georgetown University Press.

Dossey, B. M., & Guzzetta, C. E. (2000). Holistic nursing practice. In B. M. Dossey, L. Keegan, & C. E. Guzzetta (Eds.), Holistic nursing: A handbook for practice (3rd ed., pp. 5–26). Rockville, MD: Aspen.

Emanuel, L. A., Danis, M., Pearlman, R. A., & Singer, P. A. (1995). Advance care planning as a process: Structur- ing the discussions in practice. American Geriatrics Society, 43, 440–446.

Engelhardt, H. T. (1986). Suicide in the cancer patient. Cancer, 36(2), 105–109.

Eriksson, K. (1997). Understanding the world of the pa- tient, the suffering human being: The new clinical paradigm from nursing to caring. Advanced Practice Nursing Quarterly, 3(1), 8–13.

Fesmire, S. (2003). John Dewey and moral imagination. Bloomington, IN: Indiana University Press.

Fine, R. L. (2005). From Cruzan to Schiavo: Medical, ethi- cal, and legal issues in severe brain injury. Baylor Uni- versity Medical Center Proceedings, 18(4), 303–310.

Finnerty, J. L. (1987). Ethics in rational suicide. Critical Care Nursing Quarterly, 10(2), 86–90.

Frank, R., & Anselmi, K. K. (2011). Washington v. Glucks- berg: Patient autonomy v. cultural mores in physi- cian-assisted suicide. Journal of Nursing Law, 14(1), 11–16.

Frontline. (2014). Chronology of Dr. Jack Kevorkian’s life and assisted suicide campaign. Retrieved from http://www.pbs.org/wgbh/pages/frontline/kevorkian /chronology.html

Albom, M. (1997). Tuesdays with Morrie: An old man, a young man, and life’s greatest lesson. New York, NY: Broadway Books.

American Nurses Association. (2005). American Nurses Association statement on the Terri Schiavo case [PDF file]. Retrieved from https://www.legis.iowa.gov/docs /publications/SD/19318.pdf

American Nurses Association (ANA). (2015). Code of ethics for nurses with interpretive statements. Silver Spring, MD: Author.

American Nurses Association (ANA). (2016). Nurses’ roles and responsibilities in providing care and support at the end of life [PDF file]. Retrieved from https://www .nursingworld.org/~4af078/globalassets/docs/ana /ethics/endoflife-positionstatement.pdf

American Nurses Association (ANA). (2017). Nutrition and hydration at the end of life [PDF file]. Retrieved from https://www.nursingworld.org/~4af0ed/globalassets /docs/ana/ethics/ps_nutrition-and-hydration-at-the -end-of-life_2017june7.pdf

Arbour, R. B. (2013). Brain death: Assessment, contro- versy, and confounding factors. Critical Care Nurse, 33(6), 27–46. doi:10.4037/ccn2013215

Battin, M. P. (1994). The least worst death: Essays in bioeth- ics on the end of life. New York, NY: Oxford University Press.

Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.). New York, NY: Oxford University Press.

Benjamin, M. (2003). Pragmatism and the determination of death. In G. McGee (Ed.), Pragmatic bioethics (2nd ed., pp. 193–206). Cambridge, MA: MIT Press.

Benner, P., Kerchner, S., Corless, I. B., & Davies, B. (2003). Attending death as a human passage: Core nursing principles for end-of-life care. American Journal of Critical Care, 12(6), 558–561.

Bondeson, J. (2001). Buried alive: The terrifying history of our most primal fear. New York, NY: W. W. Norton.

Brannigan, M. C., & Boss, J. A. (2001). Healthcare ethics in a diverse society. Mountain View, CA: Mayfield.

Brogan, G. (2006). Inventing the good death. Registered Nurse: Journal of Patient Advocacy, 102(7), 10–14.

Buchanan, A. E., & Brock, D. W. (1990). Deciding for oth- ers: The ethics of surrogate decision making. New York, NY: Cambridge University Press.

Buckley, J. W., & Abell, N. (2009). Factors affecting life -sustaining treatment decisions by health care surro- gates and proxies: Assessing benefits and barriers. Social Work in Health Care, 48, 386–401.

Cassell, E. J. (2004). The nature of suffering and the goals of medicine (2nd ed.). New York, NY: Oxford University Press.

Cavanaugh, T. A. (2006). Double-effect reasoning: Doing good and avoiding evil. Oxford, UK: Clarendon Press.

235References

Garrett, C. (2004). Gut feelings: Chronic illness and the search for healing. New York, NY: Rodopi.

Georges, J. J., & Grypdonck, M. (2002). Moral problems experienced by nurses when caring for terminally ill people: A literature review. Nursing Ethics, 9(2), 155–178.

Hester, D. M. (2003). Significance at the end of life. In G. McGee (Ed.), Pragmatic bioethics (2nd ed., pp. 121– 136). Cambridge, MA: MIT Press.

Hester, D. M. (2010). End of life care and pragmatic deci- sion making: A bioethical perspective. New York, NY: Cambridge University Press.

International Council of Nurses (ICN). (2012). The ICN  code of ethics for nurses. Geneva, Switzerland: Author.

Jonsen, A. R., Siegler, M., & Winslade, W. J. (2006). Clinical ethics (6th ed.). New York, NY: McGraw-Hill.

Jonsen, A. R., Veatch, R. M., & Walters, L. (1998). Source book in bioethics. Washington, DC: Georgetown Uni- versity Press.

Kahn, D. L., & Steeves, R. H. (1986). The experience of suffering: Conceptual clarification and theoretical definition. Journal of Advanced Nursing, 11, 623–631.

Kingsbury, K. (2008, March 21). When is sedation really euthanasia? Retrieved from http://www.time.com /time/health/article/0,8599,1724911,00.html

Konishi, E., Davis, A. J., & Aiba, T. (2002). The ethics of withdrawing artificial food and fluid from termi- nally ill patients: An end-of-life dilemma for Japanese nurses and families. Nursing Ethics, 9(1), 7–19.

Kopala, B., & Kennedy, S. L. (1998). Requests for assisted suicide: A nursing issue. Nursing Ethics, 5(1), 16–26.

Ladd, R. E., Pasquerella, L., & Smith, S. (2002). Ethical issues in home health care. Springfield, IL: Charles C Thomas.

Lehto, R. H., & Stein, K. F. (2009). Death anxiety: An analysis of an evolving concept. Research and Theory for Nursing Practice: An International Journal, 23(1), 23–41.

LEXIS-NEXIS. (1999). In the matter of Karen Ann Quinlan, an alleged incompetent [70 N.J. 10; 355 A.2d 647; 1976 N.J. LEXIS 181; 79 A.L.R.3d205] [PDF file]. Retrieved from http://euthanasia.procon.org/sourcefiles/In_Re _Quinlan.pdf

Lustig, A. (2003). End-of-life decisions: Does faith make a difference? Commonweal, 130(10), 7.

Lynne, D. (2005). The whole Terri Schiavo story: 15-year saga of brain-injured woman no clear-cut, right-to-die case. Retrieved from http://www.wnd.com/2005/03 /29516/

Maeve, M. K. (1998). Weaving a fabric or moral meaning: How nurses live with suffering and death. Journal of Advanced Nursing, 27, 1136–1142.

Map