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