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James J. Hughes Health Policy and Bioethics Summer 2009

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1 James J. Hughes Health Policy and Bioethics Summer 2009
End of Life Ethics James J. Hughes Health Policy and Bioethics Summer 2009

2 The Changing Medical Situation
4/15/2017 The Changing Medical Situation Until the 1940’s, medical care was often just comfort care, alleviating pain when possible During the last 50+ years, medicine has become increasingly capable of postponing death Increasingly, we are forced to choose whether to allow ourselves to die. 85% of Americans die in some kind of health-care facility (hospitals, nursing homes, hospices, etc.), many others dependent on technology in the home 4/15/2017 Lawrence M. Hinman

3 Less than 20% Less than 40% About half 60 to 80% More than 80%
What % of US deaths are preceded by withholding or withdrawing life-sustaining treatment? Less than 20% Less than 40% About half 60 to 80% More than 80%

4 Respect for Patient Autonomy
Self-determination v paternalism “Right to die” Allowing / withholding consent Advance directive statements Advocacy by proxy Do not resuscitate (DNR) Organ donation

5 4/15/2017 Karen Ann Quinlan Karen Ann Quinlan

6 Nancy Cruzan 1983 car accident puts Nancy Cruzan in PVS
1990 Supreme Court upholds parents right to remove feeding tube But since family members may not always act in the best interests of incompetent patients, there is need for “clear and convincing evidence” of pt wishes, otherwise “err on the side of life”

7 1990 Patient Self-Determination Act (PSDA)
In response to Cruzan, 1991 PSDA requires hospitals tell pts on admission: (1) the right to participate in and direct their own health care decisions; (2) the right to accept or refuse medical or surgical treatment; (3) the right to prepare an advance directive;

8 Capacity & Competence Compos Mentis
Decision-making capacity: if pt has the ability to understand the medical problem and the risks and benefits of the available treatment options. Competency: legal determination of capacity

9 Competence Adults (> 16 yrs) assumed to be competent unless evidence to contrary Adults may be competent to make some decisions even if they are not competent to make others Mental disorder / impairment does not necessarily imply incompetence Understand, retain, choose freely < 16 yrs demonstrated competence required i.e. sufficient understanding + intelligence

10 Incompetence May treat incompetents if in their “best interests,” including patient’s wishes and beliefs when competent, current wishes, general well-being and spiritual and religious welfare If people no longer have capacity but have previously clearly indicated their refusal of such treatment in the circumstances in which they now find themselves, the refusal must be accepted Mental health legislation provides the possibility of treatment for a person’s mental disorder or its complications without their consent. It does not give power to treat unrelated physical illness without consent

11 Emergency Tx / unavailable consent
Treatment which is immediately necessary Parental consent for child (< 18 yrs + unable to consent) or Tx as above Parental refusal of life-saving provision -> court order

12 Euthanasia vs. Assisted Suicide
Euthanasia: ending someone else’s life in a painless manner Assisted suicide: helping someone end their life Netherlands: Legalized euthanasia with prior consent/request Oregon (1994): Legal prescription of lethal doses of drugs Jack Kevorkian’s machine – patient pushed the button

13 Oregon’s Experience

14 Advance statements Advance directives / “living will”
Chronic debilitating illness / critical care An expression of preferences Generic v. disease specific Often broad + non-specific in nature Limited legal standing Contemporaneous decision overrides

15 Advance Directives, Pro/Con
Advantages Autonomy Facilitate communication A guide Shorten dying Disadvantages Limited uptake Limited impact Patient-clinician conflict Wording crucial Unanticipated circumstances

16 Proxies, Surrogate Decision-Makers
Advantages Can respond to complex situation when pt is incompetent Is no better/worse than advance directive in predicting wishes Disadvantages May have conflicts of interest to hasten death Reluctance to “kill” loved one Unless just one is specified by pt or law, decision-making by committee

17 Futility Futility: treatment which cannot with reasonable probability cure, ameliorate or restore a quality of life which would be satisfactory to the patient Institute / continue / escalate / limit / withhold/ withdraw No clear lines – subject to resource constraints

18 Typology of Death-Causing

19 Forgoing Treatment at the End of Life
2.2 Million US deaths/ year. 2.0 Million deaths under health care. Excludes homicides, car accidents, etc. 1.8 Million deaths after decisions to withhold or withdraw life-sustaining treatment. Court involvement/legal risks are small. Since 1976: appellate court decisions, two criminal cases (excluding euthanasia).

20 Do Not Resuscitate (DNR)
Cardio-respiratory arrest CPR success circumstance-dependent Presumed consent (for CPR) Communication absolutely essential Multidisciplinary Status / wishes recorded + reviewed ? witnessed CPR

21 The Moral and Legal Consensus on Choices about Life Supporting Treatments
Patients have the right to refuse any medical treatment regardless of whether they are "terminal" or “curable.” There is no difference between not starting or stopping a treatment or using for a trial and then stopping it if is not not benefiting a patient. Decisionally incapable persons do not lose the right to have any treatment decision made. Tube feedings are a life-sustaining treatment.

22 Cases (i) A unconscious patient will almost certainly die unless paced on a respirator. His family explain he has expressed a clear desire not to be placed on one. He is treated according to those wishes and dies. (ii) Case i, but the man is placed on the respirator before his family arrive. After his wishes are explained, he is removed from the respirator and dies.   Are these cases of killing or letting die? Are these cases morally different?

23 Cases (1) A man drowns his young cousin so that he won't have to split an inheritance with him. (2) Case #1, except, before he can kill him, the cousin slips and falls face down in the bathtub. The man just has to watch his cousin drown.   Are these cases of killing or letting die? Are these cases morally different?

24 Cases (a) In accordance with an ALS patient's wishes the doctors remove her from her respirator. She dies. (b) A greedy son removes an ALS patient from her respirator because he wants to collect his inheritance. She dies. Are these cases of killing or letting die? Are these cases morally different?

25 Coma, MCS, PVS, Brain Death
Coma: cannot be awakened, fails to respond normally to pain or light, does not have sleep-wake cycles, and does not take voluntary actions. Minimally Conscious State (MCS): occasional, but brief, evidence of environmental and self-awareness Persistent Vegetative State (PVS): wakefulness (sleep-wake, respond to light) without detectable awareness Persistent Vegetative State after 1 year => Permanent Vegetative State

26 Withholding ICU Treatment
Rationale in US for withholding treatment from ICU pts 45% Imminent death 50% Quality of life 5% Disease precluded long-term survival. 19% ICU patients died, 65% of these after withdrawing tx, 92% in ICU, 8% on ward. Anaesthesia 1998;53:523-8. See also Crit Care Med 2005;33:750-5. Observational, prospective, 4 academic and 7 community hospitals in France. Crit Care Med 1997; 25: Retrospective cohort, 3 AHC ICUs, 419 pts deaths, 1 yr. Mayo Clin Proc 2006;81:

27 Brain death v. PVS Traditional cardio-respiratory death
“The body as an integrated whole has ceased to function” Loss of whole brain function Uniform Determination of Death Act (1981) Neocortical death (includes PVS) Implications for society, organ retrieval

28 The Case of Terri Schiavo
Terri Schiavo becomes PVS in 1990 Her husband, Michael, relates that she would not want treatment in a PVS. In 1998 begins to petition to remove feeding tube. Her parents, Bob and Mary Schindler, maintained she might recover with treatment., try to remove Michael as guardian. FL legislature, Congress attempt intervention in 2005 11th Appeals Court Denies Appeal Schiavo dies in 2005

29 Medical Care for Old in Last Year of Life
11% USA health $ 27% M’care costs (flat x20y) Health Aff 2001;20: Universal use of Advance directives Hospice care Futility guidelines would reduce medical costs 3.5%. NEJM 1993:1092 JAMA 2001;

30 Organ donation Demand rising, supply falling
Requires consent / assent – patient or N.O.K. Advance statement (registration) Relatives’ wishes Presumed consent / opt out

31 Non-heart-beating organ donors?
Limited BSD organ pool CVS-RS death Immediate organ retrieval + preservation (controlled withdrawal / failed resuscitation) Life saving + enhancing Elective ventilation + its implications? Comparable retrieved organ efficacy? Misunderstanding of motives of care?

32 Personhood & Personal Identity
Thought Experiments Scoop out my dead brain and keep me on life support Scoop out my dead brain and replace it with someone else’s Scoop out my dead brain, and grow a new one Who would I be legally? 32 11/4/2005 Institute for Ethics and Emerging Technologies

33 Alcor’s Definition of Death
Death: irreversible loss of the structural information which encodes memory and personality Alcor Cryonics: Reaching for Tomorrow 33 11/4/2005 Institute for Ethics and Emerging Technologies

34 Beneficence / non-maleficence
Do good / do no harm Obligations to treat the living Obligation not to treat the living in ways that reduce their quality of life Obligation to counsel patients to avoid futile treatment, or pursue life-saving treatment Obligation not to treat the dead

35 Acts, omissions + double effect
Withholding / withdrawing v killing Outcome v intention Voluntary passive euthanasia Physician-assisted suicide / active euthanasia – illegal Symptom palliation + CVS-RS depression

36 Hospice and Palliative Care
Pain management, counseling, social support Difficulty in determining when to “give up” and refer to palliation Lack of adequate funding for palliation, hospice Drug war restrictions on access to opiates (oxycontin, morphine, etc.)

37 Justice Futility costly (economic and emotional)
Finite healthcare resources Fair distribution Ration services / limit treatment options Clinicians - patient advocates + rationers Govt + judiciary as advocates + rationers Pressure groups - advocates never rationers! Cultural variance / economic variance

38 Quality of Life (Utility)
Maximizing outcomes / preferences Tension between utility + equality Resource concentration? Service choices Implies measurement / quality immeasurable? Demands research

39 Research on the Dying An imperative – to enhance care
Conflict public v personal interests? Quantifiable / identifiable risks? Declaration of Helsinki – concern for the interests of the subject must prevail over the interest of science + society Requires rigorous “consenting”: (i) research (ii) not contrary to subject’s interests (iii) outcome unpredictable (iv) freedom to withdraw Research ethics committees / MRC / Colleges

40 Should all patients be treated?
Natural claim Natural duty Professional duty Statutory right to care (consultation, advice, treatment) Received, respected, heard, advised, treated appropriately if available Responsibility for the treatment chosen rests with the clinician Courts authorize not order

41 Self harm, cost + treatment
Medical indications Autonomy Best interests External factors – relatives / resource allocation Public policy Informed debate


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