Ethics at the End-of-Life

1. Ethics at the End-of-Life Richard L Elliott, MD PhD Professor and Director Medical Ethics Mercer University School of Medicine

2. Goals • Can patients refuse life-sustaining interventions? • Right-to-die and Right-to-privacy cases • What do we do when patients can no longer decide? • Patient Self-Determination Act • Advance directives • Futility of care – should we intervene just because we can? • Physician-assisted suicide – Should physicians help patients die?

3. You are a recently graduated internist attending at Sacred Heart Medical Center. A 21-year-old young woman is brought to the ER. She had been found not breathing in her apartment by her roommates, was resuscitated by paramedics. Toxicology was positive for alcohol and diazepam. She is unable to breathe on her own and is placed on a ventilator. After several months she has not regained consciousness and her parents request she be extubated.

4. What should you do? • Determine prognosis for recovery • Ask about advance directives, expression of wishes regarding ventilators • Ask the medical director about relevant policies and procedures • Request an ethics committee consultation

5. Results of actions • A neurology consultation determines your patient to be in a persistent vegetative state, and the prognosis for recovery is very small • The medical director informs you that Sacred Heart does not condone removal of ventilators unless patients are brain dead • The parents continue to insist on extubation

6. Attempt to transfer the patient? • Is it ethical to tell the parents the hospital will pick up the costs of care if the patient remains intubated, but that the cost will be borne by the parents if they attempt to force extubation through court action?

7. An accepting hospital is not found. The case is heard by the state supreme court, which decides in favor of the parents’ request, and orders removal of the ventilator.

8. On what grounds might the court base its decision? • Right to privacy • Patient autonomy as delegated to surrogate decisionmakers

9. Having received the court order, you decide to: • Stop the ventilator immediately after notifying the parents, or • Wean the patient from the ventilator

10. After being weaned from the ventilator, the patient survives another 10 years in a persistent vegetative state, succumbing eventually to an infection

11. Who was this woman?

12. Karen Ann Quinlan 1954-1985 • 1975, New Jersey • Alcohol and Valium • Persistent vegetative state, ventilator • Family wanted ventilator removed • Hospital, AMA, attending physicians disagreed • New Jersey Supreme Court: right to privacy • Died 10 years later

13. Right to Die Cases • 1965 Griswold v. Connecticut • 1973 Roe v. Wade • 1975 Karen Quinlan • 1990 Nancy Cruzan • 1994 Oregon’s Death with Dignity Act • 1997 US Supreme Court Quill, Washington • 2004 Terri Schiavo

14. Griswold v. Connecticut • 1965, Griswold v. Connecticut • Planned Parenthood League of Connecticut • 1961, gave advice and prescriptions to married couples for purposes of contraception • Connecticut law forbade such practice • US Supreme Court found • Right to privacy exists within the penumbra of constitutional rights

15. Nancy Cruzan • 1983, Missouri • Motor vehicle accident, PVS • Parents argued for feeding tube removal • Missouri Supreme Court: evidence for Nancy Cruzan’s wishes did not meet clear and convincing standard • 1990 US Supreme Court: requiring evidence of patient’s wishes by clear and convincing not unconstitutional and right of a competent patient to refuse medical treatment (right to die)

16. Patient Self-Determination Act 1990 • Patients are given written notice upon admission to the health care facility of their decision-making rights, and policies regarding advance health care directives in their state and in the institution to which they have been admitted. Patient rights include: • The right to facilitate their own health care decisions • The right to accept or refuse medical treatment • The right to make an advance health care directive • Facilities must ask whether the patient has an advance health care directive, and make note of this in their medical records. • Facilities must provide education to their staff and affiliates about advance health care directives. • Health care provides not allowed to discriminately admit or treat patients based on whether they have an advance health care directive.

17. Terri Schiavo1963-2005

18. Terri Schiavo • 1963 Born Terri Schindler • 1984 Marries Michael Schiavo • 1986 Move to St Petersburg, FL • 1990 Cardiac arrest. Coma, then PVS. Michael appointed guardian, takes nursing classes, takes Terri to UCSF • 1991 Diagnosed with irreversible PVS • 1992 Malpractice awards 300K/750K • 1993 Rift between Michael and Schindlers

19. Terri Schiavo • 1994 Guardian ad litem reports favorably on Michael; Michael enters DNR for Terri • 1998 Michael files petition to discontinue feeding tube; parents object, question motives; 2nd guardian ad litem recommends against petition • 2000 Court rules Terri would have wanted tube removed • 2001 Feeding tube removed, replaced 2 days later • 2002 EEG no activity; CAT severe atrophy; court rules tube can be removed, upheld by appellate

20. Terri Schiavo (3) • 2003 Schindlers petition to block tube removal; tube removed and reinserted again; Florida passes “Terri’s Law” and tube reinserted • 2004 Terri’s law overturned • 2005 SCOTUS denies cert (refuses to hear case) • Michael offered $1 million to waive rights • Feeding tube removed for the third time • SCOTUS refuses to grant cert • Florida legislature attempts to make feeding tube removal illegal • Terri dies

21. Advance Directive • Durable power of attorney for health care • Living will

22. Futility of care • Medical futility if the unacceptable probability that an intervention will produce a result that the patient will be able to appreciate because: • Patient lacks capacity (e.g., PVS or coma) • Intervention lacks effectiveness or efficacy • What is an unacceptable probability? • Roughly less than 1 percent

23. What to do when decisionmaker requests futile care • Obtain consultation to verify futility of care • Consult with family about expectations for continued care • Approach the parents again after a month or so with the request and an explanation of her prognosis • Speak with someone they trust about explaining her situation and making the request • Request an Ethics Committee consultation to involve attending, medical team, family, administration • Attempt to mediate based on Ethics Committee’s findings • Give family opportunity to transfer the patient • Ask medical director for advice • Seek legal counsel

24. Futility of Care Policy • Non-emergent situations usually • Continued care is futile per consultant for functional improvement • Central elements to policy: • Consultations with staff. Family, ethicists • Mediation at least twice • Transfer if no resolution

25. What if this patientcame to you? • A 54-year-old woman with terminal ALS approaches you with a request for “something to ease me out.” She would like to say her goodbyes, but breathing has become so difficult she cannot bear to live gasping much longer. • What should you do?

26. Physician-Assisted Suicide • Physician-assisted suicide vs. euthanasia • Legal in three states • Oregon and Washington by statute • Montana Supreme Court ruled not illegal for physicians to prescribe lethal doses of medication to patients (Baxter v Montana) • Defeated in Massachusetts, 2012, 51-49% • Illegal in 34 states

27. Oregon’s Death with Dignity Act • Passed 1994 51-49 % • After US Supreme Court rulings in 1997, opposition from Oregon medical Association, Catholic Church, legislature repealed Act • Voters re-passed Act in 1998, 60-40 % • Act requires: clearly competent patient; less than six months to live confirmed by second MD; 15 day waiting period after request; MD prescribes lethal dose, does not administer

28. Oregon’s Death with Dignity Act • Since 1997, 1050 prescriptions, 653 deaths • In 2012, 115 prescriptions, 77 deaths from ingestion • Median age 69 • M:F 1:1 • 75% with cancer • 2/77 patients who died referred to psychiatry • 61 physicians wrote prescriptions http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year15.pdf

29. 1997 U.S. Supreme Court • Quill v. Vacco • Washington v. Glucksberg • New York and Washington states passed laws banning physician-assisted suicides • US Supreme Court: • No constitutional right to physician-assisted suicide • Laws banning physician-assisted suicide are not unconstitutional

30. Gonzalez v Oregon • Challenged Oregon’s Death with Dignity Act "Whether the Attorney General has permissibly construed the Controlled Substances Act, and its implementing regulations to prohibit the distribution of federally controlled substances for the purposes of facilitating an individual's suicide, regardless of a state law purporting to authorize such distribution.“ • Court ruled 6-3 in 2006 that Gonzalez had acted impermissibly • Thus the Death with Dignity Act could be implemented

31. AMA and Code of Ethics I • E-2.211 Physician-Assisted Suicide. • Physician-assisted suicide occurs when a physician facilitates a patient’s death by providing the necessary means and/or information to enable the patient to perform the life-ending act (e.g., the physician provides sleeping pills and information about the lethal dose, while aware that the patient may commit suicide).

32. AMA and Code of Ethics II • It is understandable, though tragic, that some patients in extreme duress--such as those suffering from a terminal, painful, debilitating illness--may come to decide that death is preferable to life. However, allowing physicians to participate in assisted suicide would cause more harm than good. Physician assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.

33. AMA and Code of Ethics III • Instead of participating in assisted suicide, physicians must aggressively respond to the needs of patients at the end of life. Patients should not be abandoned once it is determined that cure is impossible. Multidisciplinary interventions should be sought including specialty consultation, hospice care, pastoral support, family counseling and other modalities. Patients near the end of life must continue to receive emotional support, comfort care, adequate pain control, respect for patient autonomy, and good communication.

34. Review - Four ideas • Right to privacy->right to die->right to refuse life-preserving care • Advance directives->how are decisions made when the patient is no longer able to make them? • Decisions for a previously competent patient are made based on what the patient would have wanted had the patient been able to decide • Futility of care • Physician-assisted suicide

35. Review • Roe v Wade and Right to privacy • 1976 • Karen Ann Quinlan, “Right to Die” • 1990 • Nancy Cruzan, Patient Self-Determination Act

36. References • Burkle CM, Benson JJ. End-of-life decisions: Importance of reviewing systems and limitations after 2 recent North American decisions. Mayo ClinProc 2012; 87:1098-1105 • http://medicalfutility.blogspot.com • Pope TM. Legal briefing: The new Patient Self-Determination Act. J Clin Ethics 2013; 24:1567-67