Health care law and legislation week 4

Chapter 15

End-of-Life Issues

LEARNING OBJECTIVES

• Discuss the human struggle to survive and the right to autonomous decision-making.

• Describe how patient autonomy has been impacted by case law and legislative enactments.

• Discuss the following concepts: preservation of life with limits, euthanasia, advance directives, futility of treatment, withholding and withdrawal of treatment, and do-not-resuscitate orders.

LEARNING OBJECTIVES – II

• Discuss the purpose of an ethics committee and its consultative role in the delivery of patient care.

• Explain end-of-life issues as they relate to autopsy, organ donations, research experimentation, and clinical trials.

• Describe how human genetics and stem cell research can have an impact on end-of-life issues.

Dreams of Immortality

• Human struggle to survive

• Desire to prevent & cure illness

• Advances in medicine & power to prolong life

• Process of dying can be prolonged

• Ethical & legal issues have increased

– involving entire life span, from right to be born to right to die

Scope of Ethical Issues

• Entire Life Span

• The Right to be Born

• The Right to Die, &

• Everything in between, e.g.,

– to choose treatment

– to refuse treatment for oneself

– to refuse treatment for another

– to limit the suffering one would endure

Ethical Dilemmas Arise

When values,

rights,

duties

& loyalties conflict.

Autonomy

• Right of a person to make one’s own decisions.

• Patient has right to accept or refuse care even if it is beneficial to saving his or her life.

• Autonomy may be inapplicable in certain cases

– affected by one’s disabilities, mental status, maturity, or capacity to make decisions.

Quinlan court Relying on: Roe v. Wade

• Announced the constitutional right to privacy protects a patient’s right to self- determination.

• State’s interest did not justify interference with her right to refuse treatment.

• Quinlan’s father was appointed her legal guardian

Cruzan Case

• Supreme Court held that right-to-die should be decided pursuant to state law, subject to a due- process liberty interest, and in keeping with state constitutional law.

• Cruzans returned to Missouri probate court:

– Judge Charles Teel authorized physicians to remove the feeding tubes from Nancy.

– testimony presented demonstrated clear & convincing evidence Nancy would not have wanted to live in a persistent vegetative state.

Legislative Response: Patient Self- Determination Act of 1990

• Requires healthcare organizations to explain to patients their legal right to direct their own care

• Right to refuse medical treatment

• Right to formulate advance directives

• Right to appoint surrogate decision-maker

• Federal reimbursement requires compliance with Act

Preservation of Life

• Medical ethics does not require patient’s life be preserved at all cost under all circumstances.

• Ethical integrity

– of a profession is not compromised by a patient’s decision to forego medical care.

• Right to body integrity.

Euthanasia

• Mercy killing of hopelessly ill, injured or incapacitated

• Active

– intentional commission of an act, such as giving patient lethal drug

• Passive

– occurs when life-saving treatment (such as a respirator) is withdrawn or withheld

Physician-Assisted Suicide

• Oregon’s Death with Dignity Act of 1994

– physician-assisted suicide became a legal medical option for the terminally ill residents

• U.S. Supreme Court, in two unanimous & separate decisions, ruled

– laws in Washington & New York prohibiting assisted suicide are constitutional

– yet U.S. Supreme Court also ruled that states can allow doctors to assist in suicide of their terminally ill patients.

Advance Directives – I

• Making Preferences Known

– Obligation to make medical preferences known to treating physician.

– Any glimmer of uncertainty as to a patient's desires in an emergency situation should be resolved in favor of preserving life.

Advance Directives – II

• Living Will

• Health Care Proxy

• Determining Incapacity

• Agent’s Rights

• Durable Power of Attorney

• Guardianship

• Substituted Judgment

Futility of Treatment

• Physician recognizes effect of treatment will be of no benefit to the patient.

• Morally, a physician has a duty to inform patient when there is little likelihood of success.

• Determination as to futility of medical care is a scientific decision.

Withholding & Withdrawing Treatment – I

• Withholding of treatment

– decision not to initiate treatment or medical intervention for the patient.

• Withdrawal of treatment

– decision to discontinue treatment or medical interventions for the patient.

Withholding & Withdrawing Treatment - II

• When

– Patient in a terminal condition & there is reasonable expectation of imminent death.

– Patient a non-cognitive state with no reasonable possibility of regaining cognitive function.

– Restoration of cardiac function will last but for a brief period.

DNR Orders

• DNR orders written by a physician, indicate that in event of cardiac or respiratory arrest, no resuscitative measures should be used to revive patient.

Ethics Committee

• Committee offering objective counsel when facing difficult health care issues & decisions resource to patients, families, & staff.

• Includes wide range of community leaders.

• Analyzes ethical dilemmas, advise & educate health care providers, patients, & families.

• Assists patients & family in coming to consensus with options that best meet patient's care needs.

Ethics Committee Function

• Policy & procedure development

• Educational role

• Consultative role

• Political Advocacy

Autopsy

• Postmortem examinations to determine cause of death.

• Add to medical knowledge.

• Necessary for criminal activity or suspicious deaths.

• Deaths during surgery are reportable.

• Consent required.

Organ Donations – I

• Federal regulations

– hospitals to have, & implement, written protocols regarding organ procurement.

– notification duties concerning informing families of potential donors.

• Discretion & sensitivity in dealing with families.

Organ Donations – II

• Education

– facilitate timely donation & transplantation

• Uniform Anatomical Gift Act

– allows a person to make a decision to donate organs at the time of death and allows potential donors.

Organ Donations – III

• Millions of people suffer from kidney disease, but in 2007 there were just 64,606 kidney- transplant operations in the entire world. In the U.S. alone, 83,000 people wait on the official kidney-transplant list. But just 16,500 people received a kidney transplant in 2008, while almost 5,000 died waiting for one.

—Alex Tabarrok, The Wall Street Journal, January 8, 2010

Research, Experimentation & Clinical Trials

• Combination of federal & state regulations

– Office of Research Integrity

• Institutional Review Board

• Informed Consent

• Duty to Warn

– Risks, benefits, alternatives

• Food & Drug Administration

Organ Human Genetics – I

• Study of inheritance as it occurs in human beings, includes stem cell research, clinical genetics (e.g., genetic disease markers) & molecular genetics.

• Genetic markers are genes or DNA sequences with a known location on a chromosome that can be used to

– identify specific cells & diseases

– individuals & species

Organ Human Genetics – II

• Genetic Information Nondiscrimination Act of 2008 prohibits

– discrimination on the basis of genetic information with respect to the availability of health insurance & employment

– employers from using an individual’s genetic information when making hiring, firing, job placement, or promotion decisions

STEM CELL RESEARCH

• Use of embryonic stem cells to create organs and various body tissues.

– highly controversial, involving religious beliefs and fears as to how far scientists might go in their attempt to create, e.g., another human being.

When We Finally Know

… When we finally know we are dying, All sentient beings are dying with us,

We start to have a burning, almost heart- breaking sense of the fragility and

preciousness of each moment and each being, and from this can grow a deep, clear, limitless

compassion for all beings. −Sogyal Rinpoche

REVIEW QUESTIONS – I

1. Discuss how one caregiver’s beliefs can be in conflict with another when making end-of-life decisions. Consider topics discussed on morality, virtues, situational ethics, autonomy, and medical paternalism when framing your answer.

2. Discuss the ever-expanding role of ethics committees, including internal operational issues & external influences that affect internal operations.

3. What are the differences between allowing a patient to die and physician-assisted suicide?

REVIEW QUESTIONS – II

4. Examine the statement: "The inherent risk is that society's faith in doctors as healers would become subverted if doctors participate in physician-assisted suicide.“

5. Constitutionally, what gives patients the right to self-determination?

6. Explain why you think the Schiavo case is an example of legislating morality.