Presentation on theme: "James J. Hughes Health Policy and Bioethics Summer 2009"— Presentation transcript:
1 James J. Hughes Health Policy and Bioethics Summer 2009 End of Life EthicsJames J. HughesHealth Policy and BioethicsSummer 2009
2 The Changing Medical Situation 4/15/2017The Changing Medical SituationUntil the 1940’s, medical care was often just comfort care, alleviating pain when possibleDuring the last 50+ years, medicine has become increasingly capable of postponing deathIncreasingly, 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 home4/15/2017Lawrence 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 half60 to 80%More than 80%
4 Respect for Patient Autonomy Self-determination v paternalism“Right to die”Allowing / withholding consentAdvance directive statementsAdvocacy by proxyDo not resuscitate (DNR)Organ donation
6 Nancy Cruzan 1983 car accident puts Nancy Cruzan in PVS 1990 Supreme Court upholds parents right to remove feeding tubeBut 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 CompetenceAdults (> 16 yrs) assumed to be competent unless evidence to contraryAdults may be competent to make some decisions even if they are not competent to make othersMental disorder / impairment does not necessarily imply incompetenceUnderstand, retain, choose freely< 16 yrs demonstrated competence required i.e. sufficient understanding + intelligence
10 IncompetenceMay treat incompetents if in their “best interests,” including patient’s wishes and beliefs when competent, current wishes, general well-being and spiritual and religious welfareIf 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 acceptedMental 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 necessaryParental consent for child (< 18 yrs + unable to consent) or Tx as aboveParental refusal of life-saving provision -> court order
12 Euthanasia vs. Assisted Suicide Euthanasia: ending someone else’s life in a painless mannerAssisted suicide: helping someone end their lifeNetherlands: Legalized euthanasia with prior consent/requestOregon (1994): Legal prescription of lethal doses of drugsJack Kevorkian’s machine – patient pushed the button
16 Proxies, Surrogate Decision-Makers AdvantagesCan respond to complex situation when pt is incompetentIs no better/worse than advance directive in predicting wishesDisadvantagesMay have conflicts of interest to hasten deathReluctance to “kill” loved oneUnless just one is specified by pt or law, decision-making by committee
17 FutilityFutility: treatment which cannot with reasonable probability cure, ameliorate or restore a quality of life which would be satisfactory to the patientInstitute / continue / escalate / limit / withhold/ withdrawNo clear lines – subject to resource constraints
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 arrestCPR success circumstance-dependentPresumed consent (for CPR)Communication absolutely essentialMultidisciplinaryStatus / 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 betweennot starting orstopping a treatment orusing 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-awarenessPersistent 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 pts45% Imminent death50% Quality of life5% 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 functionUniform 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 1990Her 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 200511th Appeals Court Denies AppealSchiavo 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 ofAdvance directivesHospice careFutility guidelineswould reduce medical costs 3.5%. NEJM 1993:1092JAMA 2001;
30 Organ donation Demand rising, supply falling Requires consent / assent – patient or N.O.K.Advance statement (registration)Relatives’ wishesPresumed consent / opt out
31 Non-heart-beating organ donors? Limited BSD organ poolCVS-RS deathImmediate organ retrieval + preservation (controlled withdrawal / failed resuscitation)Life saving + enhancingElective ventilation + its implications?Comparable retrieved organ efficacy?Misunderstanding of motives of care?
32 Personhood & Personal Identity Thought ExperimentsScoop out my dead brain and keep me on life supportScoop out my dead brain and replace it with someone else’sScoop out my dead brain, and grow a new oneWho would I be legally?32 11/4/2005Institute for Ethics and Emerging Technologies
33 Alcor’s Definition of Death Death: irreversible loss of the structural information which encodes memory and personalityAlcor Cryonics: Reaching for Tomorrow33 11/4/2005Institute for Ethics and Emerging Technologies
34 Beneficence / non-maleficence Do good / do no harmObligations to treat the livingObligation not to treat the living in ways that reduce their quality of lifeObligation to counsel patients to avoid futile treatment, or pursue life-saving treatmentObligation not to treat the dead
35 Acts, omissions + double effect Withholding / withdrawing v killingOutcome v intentionVoluntary passive euthanasiaPhysician-assisted suicide / active euthanasia – illegalSymptom palliation + CVS-RS depression
36 Hospice and Palliative Care Pain management, counseling, social supportDifficulty in determining when to “give up” and refer to palliationLack of adequate funding for palliation, hospiceDrug war restrictions on access to opiates (oxycontin, morphine, etc.)
37 Justice Futility costly (economic and emotional) Finite healthcare resourcesFair distributionRation services / limit treatment optionsClinicians - patient advocates + rationersGovt + judiciary as advocates + rationersPressure groups - advocates never rationers!Cultural variance / economic variance
38 Quality of Life (Utility) Maximizing outcomes / preferencesTension between utility + equalityResource concentration?Service choicesImplies 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 + societyRequires rigorous “consenting”: (i) research (ii) not contrary to subject’s interests (iii) outcome unpredictable (iv) freedom to withdrawResearch ethics committees / MRC / Colleges
40 Should all patients be treated? Natural claimNatural dutyProfessional dutyStatutory right to care (consultation, advice, treatment)Received, respected, heard, advised, treated appropriately if availableResponsibility for the treatment chosen rests with the clinicianCourts authorize not order