Week 6 Discussion

SPECIAL FEATURES: LAW AND ETHICS

Public Health Nursing, Ethics and Human Rights Luba L. Ivanov, R.N., Ph.D.1 and Tami L. Oden, M.S.2 1The University of North Carolina at Greensboro, Greensboro, North Carolina, USA; and 2Private Practice, Raleigh, North Carolina, USA

Correspondence to:

Luba L. Ivanov, The University of North Carolina at Greensboro, PO Box 26170, Greensboro, NC 27402-6170. E-mail: [email protected]

ABSTRACT Public health nursing has a code of ethics that guides practice. This includes the Ameri- can Nurses Association Code of Ethics for Nurses, Principles of the Ethical Practice of Public Health, and the Scope and Standards of Public Health Nursing. Human rights and Rights-based care in public health nursing practice are relatively new. They reflect human rights principles as outlined in the Universal Declaration of Human Rights and applied to public health practice. As our health care system is restruc- tured and there are new advances in technology and genetics, a focus on providing care that is ethical and respects human rights is needed. Public health nurses can be in the forefront of providing care that reflects an ethical base and a rights-based approach to practice with populations.

Key words: ethics, human rights, law.

Public health nursing and nursing in general have had a code of ethics for years. However, public health nursing has only recently begun to address its role in human rights and ethics, as concern about the public good in health care has grown. Defining the public good has become increasingly difficult as society has become increasingly cultur- ally diverse and politically divided. Compounding the difficulty are issues in restructuring the health care system, the technologic advances, and advances in genetics. These have all raised new eth- ical and human rights issues, along with value con- flicts that have made it difficult for public health nurses to understand their roles in providing care that is ethical and respects human rights.

This article examines ethics from a historical and practice perspective, and looks at human rights and rights-based approach to public health nursing practice. These concepts are interrelated and pro- vide a basis for public health nursing care that con- siders the public good from an ethical and human rights perspective.

Ethics

Definition of ethics Ethics is important in any field that serves individuals, groups, or populations, including business, econom- ics, policy and law, and the broad spectrum of health care. The study of ethics concentrates on understand- ing human conduct and actions and evaluating whether those actions are “good” or “bad,” “desirable” or “undesirable” (Thiroux, 2007). The roots of ethics are in hedonism, which equated “good” with pleasure and happiness and “bad” with pain or unhappiness. Ethics, however also includes the notions of “excel- lence,” “harmony,” and “creativity” in defining actions that are “good.” Often used interchangeably, ethics andmorality are closely intertwined. Derived from the Greek word ethos (character), ethics focuses on the character of individual humanbeings.

History of ethics Bioethics or biomedical ethics, the particular branch of ethics that is related to the health care

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system, has its roots in ancient civilizations and documents, including the Code of Hammurabi, a Babylonian document dating to around 1740 B.C., and The Hippocratic Oath (Thiroux, 2007). Both of these documents focused on desirable character traits of individual health care providers, as well as the nature of the relationship between health care providers and patients. The earliest attempts to define, develop, and apply ethical principles in health care in America were guided by Thomas Per- cival’s Medical Ethics published in 1803, which developed the notion of responsibility to patients as well as the medical profession (Allen & Easley, 2008).

In recent decades, research in health care has come under close scrutiny in response to numerous worldwide instances of blatant disregard of ethics, morality, and human rights in the process of research (Allen & Easley, 2008). In addition, the availability of new medical technology has raised important ethical dilemmas in health care deci- sions, from the start of life to its end. Finally, issues surrounding the scarcity of medical resources, including both the availability of and financing for health care services, have raised new discussions in the field of bioethics.

Ethical principles Ethical principles are derived from theories of morality, such as consequentialist and nonconse- quentialist theories. Consequentialist (also called teleological) theories focus mainly on the conse- quences or outcomes of human actions, whereas nonconsequentialist (also called deontological) the- ories downgrade or disregard the consequences and focus instead on intuition, divine commands, or duties (Thiroux, 2007).

In 1940, Sir William David Ross (Beauchamp & Walters, 2003; Thiroux, 2007) built on the conse- quentialist and nonconsequentialist theories to develop ethical principles. He outlined certain prima facie (at first glance or on the surface of things) duties that all human beings should follow before other fac- tors (such as the benefit or utility of outcomes and results) are considered. These prima facie duties include (1) fidelity-faithfulness and truth telling; (2) reparation-making amends for wrongful actions; (3) gratitude-showing recognition of and thankfulness for others’ actions; (4) justice-fair distribution of bene- fits, risks, and costs; (5) beneficence-helping to

improve others; (6) self-improvement-helping to improve oneself; and (7) nonmaleficence-preventing harm to others. Ross’s ethical principles most applicable to health care and public health nursing are autonomy, nonmaleficence, beneficence, and justice.

Beauchamp (2003; Beauchamp & Childress, 2009) further developed the ethical principles focus- ing on autonomy, nonmaleficence, beneficence, and justice. These principles are widely used today in biomedical ethics and form the framework for ethi- cal decision making in health care in general and public health specifically.

Autonomy Autonomy, derived from the Greek meaning self (autos) rule (nomos), refers to an individual’s abil- ity and right to make personal choices (Beauchamp & Childress, 2009). Individual control or self-rule is based on freedom and choice. The ability to effectively make personal choices requires that all necessary information be gathered during the deci- sion-making process. Public health nurses have a responsibility to help provide adequate information about disease prevention, health promotion, and treatment to patients during the decision-making process. On occasion, the principle of autonomy may be restricted when it causes harm to individu- als, populations, or a community. For example, autonomy may be restricted when activities such as violence or substance abuse are involved.

Nonmaleficence The phrase: “Above all do no harm” summarizes the ethical principle of nonmaleficence (Beau- champ, 2003; Beauchamp & Childress, 2009; Mun- son, 2003). Public health nurses must ensure that the care they provide does not bring harm or unnecessary risk to patients. Harm can be defined as pain and suffering at all levels. The impact of harm can be manifested physically, emotionally, or financially in an individual or a community. To ensure that patients are not exposed to unnecessary risk, public health nurses must provide patients with as much information as possible regarding their medical condition or treatment, so that patients can make informed decisions without exposing themselves to potential harm or risk of disease or injury. Occasionally, as in the case with flu vaccinations, immediate and temporary pain

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may be necessary to gain long-term benefits. There may also be occasions when an immediate benefit results in a long-term negative result, as in the case of providing pain relief for a terminally ill patient even though the method of pain relief will cause a physical failure, which may result in death.

Beneficence In any field or sector of society, individuals should be encouraged to do well and do good. Their work and actions, whether professional or personal, should benefit individuals in their community and society as a whole. The ethical principle of benefi- cence involves promoting the health and general well-being of others (Beauchamp, 2003; Beauchamp & Childress, 2009; Beauchamp & Walters, 2003). Thus, beneficence is intended to have good or benefi- cial results. The difficulty with putting the principle of beneficence into action involves defining what is “good.” Outcomes and benefits, both present and future, personal and communal, as well as costs, both financial costs and loss of opportunity, ability, pleasure, or rights, should come into consideration when evaluating whether an action is “good” or ben- eficial.

Programs and policies for health promotion, health care research, and access to health care have, at their core, the principle of beneficence. Providing public goods such as health care and education, preserving the environment, providing adequate housing, providing retirement income for seniors, and promoting the arts are important roles and responsibilities of governments in most mod- ern and advanced societies. Given the limited resources available to supply public goods, how- ever, it is important for any society to balance how much and what type of public goods is provided. By examining the utility (comparing the costs and benefits) of different actions or policies, decision makers can determine where and how much of society’s resources can be invested to have the greatest impact. For example, in the case of limited vaccine availability (a limited resource), data can be gathered about which populations would benefit most from a vaccine, depending on their risk for contracting the disease and their risk of serious complications, before a policy is made regarding who should be offered the vaccine first. This exam- ple considers the utility of an action, in other words, compare the benefits (positives) and the

costs (negatives) to determine whether the net result overall will be positive or negative. Public health nurses practice the principle of beneficence when they advise patients regarding treatment options for various illnesses, including advice and information about the “cost” or “detriment” (inva- siveness, pain, financial cost) and the “benefits” (in terms of quality and quantity of life) of various treatment options (including nontreatment).

Justice The principle of justice refers to fair and equal treat- ment of all individuals in a society (Beauchamp, 2003; Beauchamp & Childress, 2009; Munson, 2003). Justice can be noncomparative or compara- tive. Noncomparative justice focuses on ensuring that the rights of individuals are protected. Compar- ative or distributive justice focuses on the allocation or distribution of society’s resources taking into consideration the benefits (positive aspects) and the burdens (negative aspects). The field of public health is concerned primarily with comparative or distributive justice.

Various theories of justice help to determine the distribution of society’s resources, for example, to each person an equal share, to each person according to need, to each person according to effort, to each person according to contribution, to each person according to merit, to each person according to free market exchange/distribution (Beauchamp & Walters, 2003). The theories of jus- tice that public health nurses are most familiar with are (1) utilitarian (a focus on maximizing public utility), (2) libertarian (a focus on fair procedures rather than outcomes), (3) communitarian (a focus on traditions and practices in a community), and (4) egalitarian (a focus on equal access to goods).

A recent theorist Rawls developed the concept of economic justice, which also is referred to as social justice (Rawls, 1971; Phelps, 2009). Rawls describes how to maximize the public utility derived from a good or service, such as medical care. Rawlsianism proposes to bring about justice in the distribution of resources by asking people to understand that their birth in a specific family is like the lottery. In other words, no individual can ask to be born wealthy or poor; this is decided by the natural lottery of life. As a result, he asks indi- viduals to ignore their social endowments, such as race, intelligence, and wealth, and make decisions

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that are not based on individual wealth and prede- termined, endowed resources (Dunn, 2008; Rawls, 1985). This, Rawls argues, would lead to a society filled with individuals who would, whether they were in a state of poverty or wealth, with favorable or unfavorable resources, make decisions that would maximize the benefit to the least advantaged indi- viduals. Rawls proposes “the greatest benefit of the least advantaged members of society” (Weimer & Vining, 2005). Rawlsianism brings a unique ability to empathize with individuals in the “least advan- taged” state. This perspective has significant implica- tions in the health policy arena. However, critics of Rawlsianism argue that such a redistribution of individual resources would decrease the incentive to create additional resources and wealth within a society.

Theories of justice assist in guiding the distri- bution of scares resources. When resources such as time, money, and medical care are scarce and com- petition for those resources arises, issues of justice, with regard to how those resources should be allo- cated, often arise. Competing needs for scarce resources must be balanced, and decisions regard- ing the allocation of resources (time, money, medi- cal care) must be considered. Decisions on the distribution of resources cannot be done apart from an ethical framework and the ethical principles of autonomy beneficence, nonmaleficence, and justice.

Nursing code of ethics The American Nurses Association (ANA) Code of Ethics for Nurses (American Nurses Association, 2001) is based on ethical theories such as human- ist, feminist, and social ethics. The words ethics and morals are used throughout the code. Ethics refers to how the nurse is to act in a given situa- tion, and morals overlap with ethics and refer to personal beliefs and cultural values. The ANA Code of Ethics includes nine provisions. It serves as a guide for ethical nursing practice, and several pro- visions of the Code are relevant to public health nursing practice with its focus on communities and populations. For example, the first provision addresses treating patients with dignity and worth, whereas the second provision addresses the nurses’ commitment to populations. Although the Code of Ethics does not directly refer to human rights, it does speak to the restriction of individual rights as a serious deviation in patient care.

Public health nursing and ethics Public health nursing does not have a separate Code from the ANA Code, but they acknowledge the Principles of the Ethical Practice of Public Health (Public Health Leadership Society, 2002) as an additional guide to ethical practice. In addition, the Scope and Standards of Public Health Nursing (Quad Council of Public Health Nursing Organiza- tions, 1999) is used as an ethical guide to practice. There are a total of 16 Standards of Practice. The 12th Standard addresses ethical practice for public health nurses and refers to practice that “preserves, protects, and promotes the autonomy, dignity, and rights of the population or community” (Ivanov & Blue, 2008, p. 730). Public health nurses deal with both ethical and moral dilemmas in practice. According to Beauchamp and Childress (2001), eth- ical dilemmas come in two forms. The first occurs when a public health nurse is faced with an act that can be considered both morally right and morally wrong with inconclusive evidence for either choice. The second type of ethical dilemma occurs when public health nurses believe they are morally obli- gated to perform two or more nursing actions but cannot do both at the same time. Public health nurses can also be in situations where they lack the moral courage to act in a certain way because of fear, or they are just reluctant to act. One example at an individual level is when a public health nurse becomes aware of an injustice against a child, but does not report it for fear of personal repercussions or repercussions at their place of employment.

Public health nurses work with communities and populations also. There are decision-making models (Gostin & Lazzarini, 1997; Kass & Gielen, 1998) that can be used at the population and com- munity level to ensure that the programs do not violate ethical and moral principles. These models assist public health nurses in promoting the public good, advancing the public’s health, and ensuring social justice. Public health nurses are involved in various situations that call for ethical and moral judgments, nationally, internationally, and at local and community levels. Examples include health care reform, HIV/AIDS, genetics and genomics, advanced directives and right to die, stem cell research, use of medicinal marijuana, and the use of various screening programs. In all of these exam- ples, the public health nurse is challenged to provide care to individuals, populations, and

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communities that is ethically and morally based and does not violate their basic human rights.

Human Rights and the Right to Health Care

Human rights and health typically have only been linked in discussions of the right to health care (Eleftheriadis, 2012; Haigh & Haigh, 2007; Kinney, 2009; Mann, Gostin, Gruskin, Brennan, Lazaarini, & Fineberg, 2006; Sandhu, 2007; Huber et al., 2011). International organizations and declarations have defined the human right to health care. For example, the World Health Organization refers to the human right to health care as “The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition” (Eleftheriadis, 2012, p. 7). The Universal Declaration of Human Rights (article 25, 1) states:

Everyone has the right to a standard of living ade- quate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemploy- ment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control (Eleftheriadis, 2012, p. 7).

The International Covenant on Social and Eco- nomic Rights defines the right to health care as “the right of everyone to the enjoyment of the high- est attainable standard of physical and mental health.” (Eleftheriadis, 2012, p. 8). The definition of health developed by the World Health Organiza- tion (World Health Organization, 1948) is “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” In each of these documents and defini- tions a clear link between the right to health care and human rights is made. However, the imple- mentation of these documents has taken various forms. In public health these documents are used to form the basis for Rights-Based Care.

Rights-Based Care

Rights-based care refers to ensuring that human rights principles guide the care provided to patients, communities, and the population (Gruskin, Bogecho

& Ferguson, 2010; Sing, 2010). Hunt (2008) defines rights-based care as care that advocates for a people- centered approach to health care with the use of human rights-based indicators. Gruskin (2006) characterizes rights-based care into three categories which are legal, advocacy, and public health practice category. The legal category refers to legal account- ability in national laws and international treaties. In other words, analyzing government policies related to health to see what is being done or not being done in relation to health and whether it is a violation of human rights. Advocacy refers to mobilizing public opinions and drawing attention to an issue that is a violation of human rights. The last category, public health practice refers to applying a human rights framework when designing, implementing, monitor- ing, and evaluating program initiatives. In practice, this refers to ensuring nondiscrimination in the development of policies and programs, being aware of the legal and policy context of the program, trans- parency in decision making surrounding the pro- gram, and being accountable for the results.

Haigh and Haigh (2007) put the principles in human rights documents into a public health frame- work. They state that a human rights approach to public health:

emphasizes the need to address the underlying societal-level causes of ill health, as well as the symptoms;

increases the likelihood that particular health poli- cies and programs will not lead to unnecessary restrictions on rights;

empowers individuals by creating clear individual entitlements to state protection or provision of benefits;

provides for universal and uniform health-related rights; and

influences not only what health services should be provided but also how they are provided (p. 607).

Rights-Based Public Health Nursing Care

A rights-based approach in public health nursing refers to actions and activities that contribute directly to the realization of one or several human rights (Gruskin et al., 2010; Maxwell, 2009; United Nations Human Rights, 2009). In other words, the

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human rights principles in the Universal Declara- tion of Human Rights guide development of pro- grams in all sectors and in all phases of planning, including setting of goals and objectives for the program and implementation and evaluation of the program. The principles include universality and inalienability, indivisibility, interdependence, and interrelatedness, equality and nondiscrimination, participation and inclusion, and accountability and the rule of law. Universality and inalienability refer to the belief that all human beings are born entitled to freedom and dignity. Indivisibility means that all rights, whether civil or political rights, such as the right to life and equality before the law, and cul- tural, economic, or social rights, such as the right to work, social security, and education, have equal status and cannot be ranked. Interdependence and interrelatedness refer to the understanding that the realization of one right often depends in part on the realization of other rights. For example, the realization of the right to health may be dependent on the right to information, or the right to educa- tion. Equality and nondiscrimination refer to the understanding that all human beings are entitled to rights without consideration of race, color, sex, eth- nicity, age, language, religion, political or other opinion, national or social origin, disability, prop- erty, birth, or other status. Participation and inclu- sion refer to the understanding that every person is entitled to active, free, and meaningful participation in, contribution to, and enjoyment of civil, eco- nomic, social, cultural, and political development through which human rights and individual free- doms can be realized. Finally, accountability and the rule of law refer to states and other duty bear- ers understanding that they are answerable for the observance of human rights.

Public health nurses work with populations and communities to improve, enhance, and pro- mote health. They often do so by developing com- munity-based programs that may focus on a population, disease, or health promotion activity. Throughout the planning, public health nurses must be aware of human rights principles, such as equality and nondiscrimination and participation and inclusion, and ensure that the human rights of those participating in the programs are not vio- lated. One way to ensure that the human rights of those participating are not violated is to include the populations for whom the programs are planned in

the early stages of program planning. Program eval- uation plans need to include evaluation of possible human rights violations to maintain accountability. When working with individuals, consideration of their basic human rights must be part of the care provided. Public health nurses need to be aware of the effects of the violations of human rights through social injustice on the health of individuals and populations. For example, the correlations between poverty and health, low education and health, and race and health are well known. These need to be considered when working with popula- tions or planning programs for those in poverty, those who are low-educated and minority popula- tions to ensure that their human rights are not vio- lated. Implementing care that reflects an understanding of the correlations between poverty and health, low education and health, and race and health ensures indivisibility, a human rights princi- ple. Public health nurses can work with policy makers to ensure that healthy public policies are passed that diminish the effects of social injustice in their communities. Contacting legislators and informing them of policies that promote health and protect the human rights of individuals and populations they work with is one way to ensure healthy public policies are passed. It is also a way to ensure accountability, a human rights principle, among policy makers thereby ensuring the obser- vance of human rights in health-related policies. These are a few examples of how public health nurses can provide rights-based public health nursing care.

In conclusion, public health nursing practice integrates ethics, morality, and justice into their practice. A rights-based approach to public health nursing practice is a newer approach, but one that is needed to promote social justice and the public good in their work with individuals, populations, and communities. In the policy arena, public health nurses can provide a rights-based approach in developing policies that reflect human rights. The ANA Code for Nurses, the Principles of the Ethical Practice of Public Health (Public Health Leadership Society, 2002), the Scope and Stan- dards of Public Health Nursing (Quad Council of Public Health Nursing Organizations, 1999) repre- sent the professional guidelines that public health nurses use to practice in an ethical and humane manner. Including rights-base public health care

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ensures that individuals, populations, and commu- nities’ human rights are not violated. Public health nurses have always been in the forefront of provid- ing care with a social conscience. Rights-based care provides nurses with the tools to ensure that individuals, populations, and communities are not only getting the best care, but care that reflects humane practices and does not violate their human rights.

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