End of Life Issues in Cancer Care Are We Making Progress?

1. End of Life Issues in Cancer CareAre We Making Progress? Carol Taylor, RN, PhD Georgetown University Center for Clinical Bioethics

2. Are We Making Progress? • Terri Schiavo, the 41-year-old brain-damaged woman who became the centerpiece of a national right-to-die battle, died March 31, 2005, after a 12 year court battle.

3. Are we making progress? • The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil.

4. Are we making progress? • In a bulletin last month (July), the Department of Veterans Affairs recommended • “Your life, your choices” as a tool to help veterans with "advance care planning." • On "Fox News Sunday," H. James Towey,, said the guide seemed to encourage people to "hurry up and die." • (August 23, 2009)

5. The following clinical situations were recently identified as creating the highest degree of moral distress for critical care nurses 1. Continuing to participate in care for hopelessly ill person who is being sustained on a ventilator, when no one will make a decision to “pull the plug” 2. Following a family’s wishes to continue life support even though it is not in the best interest of the patient 3. Initiating extensive life-saving actions when I think it only prolongs death

6. 4. Following the family’s wishes for the patient’s care when I do not agree with them but do so because the hospital administration fears a lawsuit 5. Carrying out the physician’s orders for unnecessary tests and treatments for terminally ill patients[Elpern, E.H., Covert, B. & Cleinpell, R. (November 2005). Moral distress of staff nurses in a medical intensive care unit. American Journal of Critical Care, 14(6), 523-530.]

7. Letting Go What should medicine do when it can’t save your life? by AtulGawande The New Yorker, August 2, 2010 http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande#ixzz0vYz5LvfN

8. The Lady & the reaper http://www.youtube.com/watch?v=zrQ21IIx1Ic

9. Learning objectives • Compare and contrast four paradigms for death and dying • Relate how personal, professional, and societal beliefs concerning human life, dying and death influence the outcomes of health care decision making for the seriously ill and dying • Describe the recurrent and evolving ethical issues related to decision making for the seriously ill and dying

10. Reflection Questions • What does it mean to be finite--to be creature? Are there ways in which our efforts to control and master nature work against our innate dignity as humans? 2. What does good care at the end-of-life “look like?” How can family and professional care givers respond to the holistic needs of dying persons? What does it mean to be a healing presence for the dying and their families? pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person]

11. 3. Do persons have the right to choose the time and manner of their dying? If you grant this right, are health care professionals and institutions obligated to meet all the requests patients make, so long as they are requests for legal interventions. Does the public (taxpayers) have an obligation to fund the services you desire? 4. Is reasonable to assume that once we grant the right to die this may evolve into a duty for some to die so that the resources they are consuming may be better allocated? Should government or some other body be granted the authority to determine who lives and who dies? 5. In what concrete ways do individual beliefs, values and faith commitments influence our response to the above questions?

12. Death and Dying in the U.S. Four Paradigms • Death as a natural part of life • The "medicalization" of dying • 70% of Americans die in a hospital (39%) or nursing home (31%) • Hospice/Palliative Care • Death on Demand

13. At century’s turn: at home: a family, communal, religious (non-medical) event of accidents, infectious disease By the 1970s: of heart disease, cancer, stroke an institutional, professional, & technological process -- in hospitals, i.e., the medicalization of dying The broader context:trends in how & where we die, past & present

14. Assumptions Underlying Approaches to Death & Dying • Life: No longer a "mystery" to be contemplated but a "problem" to be solved • Importance of control/mastery • Absolutization of autonomy

15. State of the ScienceHow People Die in the U.S.

16. SUPPORT STUDY-1995 • Half of conscious patients had moderate to severe pain at least ½ of time before death • 31% of patients did not wish to have CPR … BUT physicians of more than half were NOT aware of DNR order preference • Nearly half of DNR orders were written within 2 days of patient death • 40% of the patients spent at least 10 days in ICU

17. SUPPORT STUDY • Poor symptom (e.g., pain) management • Inconsistent with patient preferences & values • Problematic communication & decision making • Life-prolonging, intensive treatments vs. palliative/hospice care

18. TENOSTUDY-2004 • One in four people who died did not receive enough pain medication and sometimes received none at all. Inadequate pain management was 1.6 times more likely to be a concern in a nursing home than with home hospice care. • One in two patients did not receive enough emotional support. This was 1.3 times more likely to be the case in an institution. • One in four respondents expressed concern over physician communication and treatment options.

19. Twenty-one percent complained that the dying person was not always treated with respect. Compared with a home setting this was 2.6 times higher in a nursing home and 3 times higher in a hospital. • One in three respondents said family members did not receive enough emotional support. This was about 1.5 times more likely to be the case in a nursing home or hospital than at home.

20. Finally, national standards/guidelines • National Consensus Project for Quality Palliative Care (2004). Clinical practice guidelines for quality palliative care. http: ://www.nationalconsensusproject.org • Promoting Excellence: Seven End-of-Life Care Domains (RWJ) • National Quality Forum

21. Systemic Barriers to Appropriate End-of-Life Care • Lack of training for physicians, nurses, and other health professionals in techniques of palliative care, including pain and symptom management (EPEC, ELNEC) • Antiquated regulations that constrain the prescribing of narcotic pain medications • Misaligned incentives in health insurance benefits at the end-of-life • The cultural baggage of a death-denying culture

22. Critical milestones, ethical & legal • Hippocrates on the limits of medicine & the integrity of professional clinical judgment • Dame Cicely Saunders founds St. Christopher’s Hospice, 1967, while Luis Kutner proposes creation of living wills • Elizabeth Kubler-Ross’sOn Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy, and Their Own Families, 1969 • First hospice in the U.S.,1974

23. Critical milestones, ethical & legal • In re Quinlan, 1976 • AMA policy: withdrawal of life support to permit death = euthanasia = murder • right to privacy  health care (Rx) decisions … State’s interest in preserving life weakens & individual’s right to privacy grows as medical interventions become more invasive & prognosis for recovery diminishes ... person’s right to privacy can be asserted by a guardian when the person is incompetent • 1976 Natural Death Act passed by California • First state statute recognizing living wills

24. Critical milestones, ethical & legal • Cruzan v. Director, Missouri Dept of Health, 1990 • 1st Supreme Court decision to recognize right of dying patients to refuse treatment … states can, but need not require clear & convincing evidence of patient’s wishes before support can be withdrawn • Also in 1990: Jack Kevorkian assists in death of Janet Adkins • Patient Self Determination Act, 1991 • Federally funded health care facilities MUST inform patients of right to execute advance directives

25. Critical milestones, ethical & legal • 1994: Oregon becomes the first state to pass referendum legalizing physician assisted suicide: Washington, the next state, doesn’t follow until 2009. • Compassion in Dying v. State of Washington and Quill v. Vaco, 1997 • Supreme Court’s unanimous finding: no constitutional right to assisted suicide; morally significant distinction between • refusing, withholding & withdrawing treatment AND • assisted suicide • left the door open to the states

26. Decision making in the care of seriously or terminally ill patients • Established practices • Voluntary, informed refusal of treatment by patients w/ capacity • Withholding and withdrawing treatment on behalf of incapacitated patients on basis of substituted judgment or best interests • Palliative and hospice care • Controversial issues • Voluntarily stopping eating and drinking • Palliative sedation (a.k.a. “terminal sedation”) • Assisted suicide and euthanasia • Patient/surrogate demands for futile Rx  The troubled concept of futility

27. Continuum? Logical extension of respect for autonomy/right to privacy arguments? Voluntary, informed refusal Withholding & Withdrawing Palliative & Hospice Care Assisted Suicide Euthanasia Patient or surrogate demands for futile Rx Continuum? Application of the clinician’s duty of compassion? Principles of “beneficence” or “non-maleficence”? or Are there limits to patient autonomy/privacy? Is there a point beyond which clinicians cannot or should not go?

28. Fears Associated with Dying and Death • Fear of Losing Control • Fear of Not Being “Allowed to Die” or of Being Forced to Die Before One is Ready • Fear of Intractable Pain and Human Suffering

29. Fears Associated with Dying and Death • Fear of Becoming Increasingly Dependent • Fear of Loss of Human Dignity • Fear of an Endless Succession of Meaningless Days: I have nothing to live for..” • Economic Fears