Decisions at the End of Life

Lawrence M. Hinman
Professor of Philosophy
University of San Diego
Last updated: 8/12/14

8/12/14

(c) Lawrence M. Hinman

http://ethicsmatters.net

Introduc)on

Nearly half of all Americans die in a hospital. (CDC)

Nearly 70 percent of Americans die in a hospital, nursing home or long-term-care facility. (CDC)
7 out of 10 Americans say they would prefer to die at home. (CNN)
Only 25 percent of Americans actually die at home. (CDC)
More than 80 percent of pa)ents with chronic diseases say they want to avoid hospitaliza)on and intensive care
when they are dying.
Hospitaliza)ons during the last six months of life are rising: from 1,302 hospital admissions per 1,000 Medicare
recipients in 1996 to 1,442 in 2005.
ICU stays of longer than a week have been increasing. In 1996, 10 percent of Medicare recipients spent at least a
week in an ICU during the last six months of their lives; by 2005, the number was 14.4 percent.
The 10 leading causes of death in America are (in order): heart disease, cancer, stroke, chronic lower respiratory
disease, accidents, Alzheimer's, diabetes, inuenza and pneumonia, kidney disease and sepsis (infec)on).
7 out of 10 Americans die from chronic disease. More than 90 million Americans live with at least one chronic
disease.
Almost a third of Americans see 10 or more physicians in the last six months of their life.
Only 20 to 30 percent of Americans report having an advance direc)ve such as a living will.
Even when pa)ents have an advance direc)ve, physicians are oYen unaware of their pa)ents' preferences. One
large-scale study found that only 25 percent of physicians knew that their pa)ents had advance direc)ves on le.

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The Changing Medical Situa)on

Un)l the 1940s, medical care was oYen just
comfort care, allevia)ng pain when possible.
During the last 50+ years, medicine has become
increasingly capable of postponing death.
OYen, there is at least one more medical
interven)on that can be tried in the a_empt to
postpone death.
Of course, none is this is without cost:
Economic cost;
Addi)onal suering for the dying pa)ent;
Mental anguish to loved ones.
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The Medicaliza)on of Life Events

Birth and death are the bookends of life, the two key moments when we
enter this life and when we depart.
Increasingly, we have seen a medicaliza)on of these fundamentally
human eventsthat is, they are structured and shaped by medical
considera)ons rather than by their human meaning. We begin and end
life in a hospital room, under glaring orescent lights, with the noise of
intercoms and pagers in the background, cared for by strangers.
Some have pushed back against this tendency in trying to introduce a
more human dimension into birth (midwives, changing delivery rooms to
more hospitable places, etc.) and death (hospice).

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The Changing Insurance Situa)on

Ini)ally, the dicult was that physicians oYen wanted to do more to save the
dying than either the dying or their families wanted
The medical challenge
Fear of lawsuits

Now, the diculty is that insurance companies and managed care may
provide nancial incen)ves for doing less for the dying than either they or
their families want.

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Pa)ents with chronic illness in their last two years of life account for about 32
percent of total Medicare spending.
Medicare pays for one-third of the cost of trea)ng cancer in the nal year,
and 78 percent of that spending occurs in the last month.
One large-scale study of cancer pa)ents found that costs were about a third
less for pa)ents who had end-of-life discussions than for those who didn't.

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Choosing to Accept Death

As a result of these trends, it is paradoxically
increasingly hard to die.
Specically, dying increasingly involves choice,
acceptance of death.
From a medical perspec)ve, this involves a transi)on
from aggressively a_emp)ng to extend the persons
life to pallia)ve care, that is, to a_emp)ng to make the
remaining days or weeks or months of life as good (and
pain-free) as possible for the dying pa)ent.
From a human perspec)ve, this involves accep)ng
death.
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What are we striving for?

Euthanasia means a good death, dying
well.
What is a good death?

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Peaceful
Painless
Lucid
With loved ones gathered around

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Vacco v. Quill

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Terri Schiavo
The Terri Schiavo
case is, so far, the
most famous and
notorious end-of-
life case of the
twenty-rst
century.

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The Schiavo Case:

Sources of Uncertainty

For the public, great uncertainty about what the actual facts of the case areethical
responsibility of the media
For the family, uncertainty and disagreement about whether she was s)ll there or not
ethical responsibility of scienceespecially neurosciencesto shed light on the
connec)ons between brain condi)ons and personhood. We face two ques)ons in
cases such as this:
Is Terri there?
Is a person there?

Central to these ques)ons is the issue of how we dene personal iden)ty and personhood.

Is there any hope, or any reasonable hope, for recovery or improvement?

For everyone, uncertainty about what Terris wishes were. Conic)ng accounts of her
wishes. Here we see the importance, not only of advanced direc)ves and durable
power of a_orney for health care, but also of extensive discussion of these issues
among family and friends.
For everyone, uncertainty about the extent of pain and discomfort associated with
withdrawal of nutri)on and hydra)on. In this and numerous related ques)ons about
the end of life, hospice and pallia)ve care programs can shed light on the process of
dying.

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Schiavo Autopsy
The Schiavo autopsy, released June 15 2005,
showed severe and irreversible brain damage
Brain half its usual size
Damaged in almost all regions, including that
region which controls vision

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The Oregon Death with Dignity Act

http://www.oregon.gov/DHS/ph/pas/index.shtml
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Oregon

The most important reasons for reques)ng PADwere

wan)ng to control the circumstances of death and die at home;

loss of independence; and
concerns about future pain, poor quality of life, and inability to care for ones self.

All physical symptoms (eg, pain, dyspnea, and fa)gue) at the )me of the interview
were rated as unimportant (median score, 1), but concerns about physical symptoms
in the future were rated at a median score of 3 or higher.
Lack of social support and depressed mood were rated as unimportant reasons for
reques)ng PAD. :

Oregonians Reasons for Reques)ng Physician Aid in Dying. Linda Ganzini, MD, MPH;
Elizabeth R. Goy, PhD; Steven K. obscha, MD.

ARCH INTERN MED/VOL 169 (NO. 5), MAR 9, 2009

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Some Ini)al Dis)nc)ons

Ac)ve vs. Passive Euthanasia
Voluntary, Non-voluntary, and Involuntary
Euthanasia
Assisted vs. Unassisted Euthanasia

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Ac)ve vs. Passive Euthanasia

Ac)ve euthanasia occurs in those instances in
which someone takes ac)ve means, such as a
lethal injec)on, to bring about someones death;
Passive euthanasia occurs in those instances in
which someone simply refuses to intervene in
order to prevent someones death.

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Cri)cisms of the Ac)ve/Passive

Dis)nc)on in Euthanasia
Conceptual Clarity
Vague dividing line between ac)ve and passive,
depending on no)on of normal care
Principle of double eect

Moral Signicance
Does passive euthanasia some)mes cause more
suering?

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Ac)ve Euthanasia
Typical case for ac)ve euthanasia
there is no doubt that the pa)ent will die soon
the op)on of passive euthanasia causes
signicantly more pain for the pa)ent (and
oYen the family as well) than ac)ve euthanasia
and does nothing to enhance the remaining life
of the pa)ent, and
passive measures will not bring about the
death of the pa)ent.

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Voluntary, Non-voluntary, and

Involuntary Euthanasia
Voluntary: pa)ent chooses to be put to
death
Non-voluntary: pa)ent is unable to make a
choice at all
Involuntary: pa)ent chooses not to be put
to death, but is anyway
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Assisted vs. Unassisted

Euthanasia
Many pa)ents who want to die are unable to
do so without assistance
Some who are able to assist themselves
commit suicide with guns, etc.--ways that are
much harder and dicult for those who are
leY behind.

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Overview of Dis)nc)ons
Passive
Voluntary Currently legal;

often contained in
living wills

Nonnvoluntary: Sometimes legal,

Patient Not but only with court
Able to Choose permission

Involuntary: Not Legal

Against
Patients
Wishes

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Active:
Not Assisted

Active:
Assisted

Equivalent to
suicide for the
patient

Equivalent to suicide
for the patient;
Possibly equivalent to
murder for the
assistant, except in
Oregon
Equivalent to either
suicide or being
murdered for the
patient;
Legally equivalent to
murder for the
assistant
Equivalent to being
murdered for the
patient;
Equivalent to murder
for assistant

Not possible

Not possible

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Compassion for Suering

The larger ques)on in many of these
situa)ons is: how do we respond to suering?

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Hospice and pallia)ve care

Aggressive pain-killing medica)ons
Sirng with the dying
Euthanasia

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The Sanc)ty of Life

Respect for Life

Life is a giY from God

Respect for life is a seamless garment
Importance of ministering to the sick and
dying
See life as priceless (Kant)

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The Right to Die

Do we have a right to die?
Nega)ve right (others may not interfere)
Posi)ve right (others must help)

Do we own our own bodies and our lives?

If we do own our own bodies, does that
give us the right to do whatever we want
with them?
Isnt it cruel to let people suer pointlessly?
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The Slippery Slope

Worrisome examples from history:
Nazi eugenics program

California eugenics program

Chinese orphanages

Special danger to undervalued groups in our
society

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The elderly
Minori)es
Persons with disabili)es
Groups that are typically discriminated against

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Two Models
A u)litarian model, which emphasizes
consequences
A Kan)an model, which emphasizes
autonomy, rights, and respect

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The U)litarian Model

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Goes back at least to John Stuart Mill (1806-73)

The greatest good for the greatest number
Morality is a ma_er of consequences
We must count the consequences for everyone
Everyones suering counts equally
We must always act in a way that produces the
greatest overall good consequences and least
overall bad consequences.

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The Calculus
Morality becomes a ma_er of
mathema)cs, calcula)ng and
weighing consequences
Key insight: consequences
ma_er
The dream: bring certainty to
ethics

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How much care should be given at the end of

life?
Health care providers are increasingly
concerned, not just about how much money
is spent on pa)ents, but about how
eec)vely it is spent.
Dispropor)onate amount of money spent in
nal months of life.
40 percent of Medicare dollars cover care for
people in the last month.
Nearly one third of terminally ill pa)ents
with insurance used up most or all of their
savings to cover uninsured medical expenses
such as home care.

Concept of medical fu)lity is u)litarian in

character.

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What is a good death?

Eudaimonistic utilitarians: a
good death is a happy death.
John Stuart Mill

Jeremy Bentham.
Hedonis)c u)litarians: a good
death is a painless death.

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Understanding Bizarre Sugges)ons

All of the following make sense if we think of end-of-
life decisions solely in terms of reducing painful
consequences:
Passive euthanasia some)mes worse than ac)ve
euthanasiaJames Rachels
Its over, Debbiejust end the suering
A duty to die

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The Kan)an Model

Central insight: people
cannot be treated like
mere things.
Key no)ons:
Autonomy & Dignity
Respect
Rights

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Autonomy & Respect

Kant felt that human beings were dis)nc)ve:
they have the ability to reason and the ability
to decide on the basis of that reasoning.
Autonomy = freedom + reason
Autonomy for Kant is the ability to impose reason
freely on oneself.

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Trea)ng People as Mere Means

The Tuskegee Syphilis Experiments
More than four hundred African American men
infected with syphilis went untreated for four decades
in a project the government called the Tuskegee Study
of Untreated Syphilis in the Negro Male.
Con)nued un)l 1972

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Protec)ng Autonomy
Advanced Direc)ves
are designed to protect
the autonomy of
pa)ents
They derive directly
from a Kan)an view of
what is morally
important.

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Autonomy: Who Decides

Kan)ans emphasize the
importance of a pa)ents right
to decide
U)litarians look only at
consequences
In cases such as the Siamese
twins, they see radically
dierent worlds.

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From Autonomy to Rights

Because human beings have the ability to
make up their own minds in accord with the
dictates of reason, they have certain rights.
If someone has a right, we have a correla)vely
duty to respect that right.

Rights Du)es
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Types of Rights
Two types of rights
Nega)ve: imposes du)es of non-
interference on others
Posi)ve: imposes du)es of
assistance on others

Health care (including end-of-life

care) as a right:
Nega)ve right. Widespread
agreement on this.
Posi)ve right. Much disagreement.
Do people have a right to health
care even when they cant pay? On
whose shoulders does the duty fall?
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Conclusion
Many of the ethical disagreements about
end-of-life decisions can be seen as
resul)ng from diering ethical frameworks,
esp. Kan)an vs. u)litarian.
Use these models to understand where you
stand, where your pa)ents stand, and
where your organiza)on stands in regard to
end-of-life issues.

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38

Appendix
Jack Kevorkian
Nearer My God to Thee

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