End of Life Ethics
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Transcript of End of Life Ethics
End of Life EthicsEnd of Life Ethics
James J. HughesHealth Policy and BioethicsSummer 2009
04/21/23Lawrence M. Hinman http://ethics.sandiego.edu 2
The Changing Medical The Changing Medical SituationSituation
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
What % of US deaths are preceded by What % of US deaths are preceded by withholding or withdrawing life-withholding or withdrawing life-
sustaining treatment?sustaining treatment?
1. Less than 20%2. Less than 40%3. About half 4. 60 to 80%5. More than 80%
Respect for Patient Respect for Patient AutonomyAutonomySelf-determination v paternalism“Right to die”Allowing / withholding consentAdvance directive statementsAdvocacy by proxyDo not resuscitate (DNR)Organ donation
Karen Ann QuinlanKaren Ann Quinlan
Karen Ann Quinlan
Nancy CruzanNancy Cruzan1983 car accident puts Nancy
Cruzan in PVS1990 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”
1990 Patient Self-1990 Patient Self-Determination Act (PSDA)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;
Capacity & CompetenceCapacity & CompetenceCompos MentisDecision-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
CompetenceCompetenceAdults (> 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
IncompetenceIncompetenceMay 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
Emergency Tx / unavailable Emergency Tx / unavailable consentconsentTreatment which is immediately
necessaryParental consent for child (< 18
yrs + unable to consent) or Tx as above
Parental refusal of life-saving provision -> court order
Euthanasia vs. Assisted Euthanasia vs. Assisted SuicideSuicide
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
Oregon’s Experience Oregon’s Experience
Advance statementsAdvance statementsAdvance directives / “living will”Chronic debilitating illness / critical
careAn expression of preferencesGeneric v. disease specificOften broad + non-specific in natureLimited legal standingContemporaneous decision overrides
Advance Directives, Advance Directives, Pro/ConPro/ConAdvantagesAutonomy Facilitate
communicationA guide Shorten dying
DisadvantagesLimited uptakeLimited impactPatient-clinician
conflictWording crucialUnanticipated
circumstances
Proxies, Surrogate Decision-Proxies, Surrogate Decision-MakersMakersAdvantages Can respond to
complex situation when pt is incompetent
Is no better/worse than advance directive in predicting wishes
DisadvantagesMay 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
FutilityFutilityFutility: 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
Typology of Death-Typology of Death-CausingCausing
Passive Active:Not Assisted
Active:Assisted
Voluntary Currently legal;often contained inliving wills
Equivalent tosuicide for thepatient
Equivalent to suicidefor the patient;Possibly equivalent tomurder for theassistant, except inOregon
Nonnvoluntary:Patient Not
Able to Choose
Sometimes legal,but only with courtpermission
Not possible Equivalent to eithersuicide or beingmurdered for thepatient;Legally equivalent tomurder for theassistant
Involuntary:Against
Patient’sWishes
Not Legal Not possible Equivalent to beingmurdered for thepatient;Equivalent to murderfor assistant
Forgoing TreatmentForgoing Treatmentat the End of Lifeat 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: 60-80 appellate court
decisions, two criminal cases (excluding euthanasia).
Do Not Resuscitate (DNR)Do Not Resuscitate (DNR)Cardio-respiratory arrestCPR success circumstance-
dependentPresumed consent (for CPR)Communication absolutely essentialMultidisciplinaryStatus / wishes recorded +
reviewed? witnessed CPR
The Moral and Legal Consensus on The Moral and Legal Consensus on Choices about Life Supporting Choices about Life Supporting
TreatmentsTreatmentsPatients 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.
Cases 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?
CasesCases(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?
CasesCases(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?
Coma, MCS, PVS, Brain Coma, MCS, PVS, Brain Death 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 awarenessPersistent Vegetative State after 1 year => Permanent Vegetative State
Withholding ICU TreatmentWithholding ICU TreatmentRationale 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; 25:1324-31 Retrospective cohort, 3 AHC ICUs, 419 pts deaths, 1 yr. Mayo Clin Proc 2006;81:896-901.
Brain death v. PVSBrain death v. PVSTraditional 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
The Case of Terri SchiavoThe Case of Terri SchiavoTerri 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 2005
11th Appeals Court Denies Appeal Schiavo dies in 2005
Medical Care for Old in Last Year of Medical Care for Old in Last Year of Life Life
Last year of life◦ 11% USA health $
◦ 27% M’care costs (flat x20y)
◦ Health Aff 2001;20:188-95.
Universal use of ◦ Advance directives◦ Hospice care◦ Futility guidelines
would reduce medical costs 3.5%. NEJM 1993:1092
0
5
10
15
20
25
30
65-74 75-74 85+
M'care $1000/yr % using ICU
JAMA 2001;2861349-55.
Organ donationOrgan donationDemand rising, supply fallingRequires consent / assent – patient or
N.O.K.Advance statement (registration)Relatives’ wishesPresumed consent / opt out
Non-heart-beating organ Non-heart-beating organ donors?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 11/4/2005Institute for Ethics and Emerging Technologies
Personhood & Personal Personhood & Personal IdentityIdentity
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?
33 11/4/2005Institute for Ethics and Emerging Technologies
Alcor’s Definition of DeathAlcor’s Definition of Death
Death: irreversible loss of the structural information which encodes memory and personalityAlcor Cryonics: Reaching for
Tomorrow
Beneficence / non-Beneficence / non-maleficencemaleficenceDo good / do no harm Obligations to treat the livingObligation 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
Acts, omissions + double Acts, omissions + double effecteffectWithholding / withdrawing v
killingOutcome v intentionVoluntary passive euthanasiaPhysician-assisted suicide /
active euthanasia – illegal Symptom palliation + CVS-RS
depression
Hospice and Palliative Hospice and Palliative CareCarePain 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.)
JusticeJusticeFutility 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
Quality of Life (Utility)Quality of Life (Utility)Maximizing outcomes /
preferencesTension between utility +
equalityResource concentration?Service choicesImplies measurement / quality
immeasurable?Demands research
Research on the DyingResearch on the DyingAn 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
Should all patients be Should all patients be treated?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
Self harm, cost + Self harm, cost + treatmenttreatmentMedical indicationsAutonomyBest interestsExternal factors – relatives /
resource allocationPublic policyInformed debate