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Decisions at the

End of Life

Lawrence M. Hinman
Send E-mail to Larry Hinman

University of San Diego


03/15/15

Lawrence M. Hinman
http://ethics.sandiego.edu

Introduction

Increasingly, Americans die in


medical facilities
85% of Americans die in some kind
of health-care facility (hospitals,
nursing homes, hospices, etc.);
Of this group, 70% (which is
equivalent to almost 60% of the
population as a whole) choose to
withhold some kind of lifesustaining treatment

03/15/15

Lawrence M. Hinman
http://ethics.sandiego.edu

The Changing Medical Situation

Until the 1940s, 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.

03/15/15

Lawrence M. Hinman
http://ethics.sandiego.edu

The Changing Insurance Situation

Initially, the difficult was that physicians often wanted


to do more to save the dying than either the dying or
their families wanted
The medical challenge
Fear of lawsuits

Now, the difficulty is that insurance companies and


managed care may provide financial incentives for
doing less for the dying than either they or their
families want.

Close to one-third of all Medicare dollars are spent on endof-life care

03/15/15

Lawrence M. Hinman
http://ethics.sandiego.edu

An Increasing Interest in
End-of-life Issues
The Bill
Moyers series
on dying;
Sept. , 2000.
JAMA issues
on End-of-life
decisions
New England
Journal of
Medicine

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Lawrence M. Hinman
http://ethics.sandiego.edu

What are we striving for?

Euthanasia means a good death,


dying well.
What is a good death?
Peaceful
Painless
Lucid
With loved ones gathered around

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Lawrence M. Hinman
http://ethics.sandiego.edu

Part One.
Cases and Laws

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Lawrence M. Hinman
http://ethics.sandiego.edu

Karen Ann Quinlan

Karen Ann Quinlan

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Karen Ann Quinlan, Web Resources

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Cruzan

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Cruzan, 2

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Cruzan, 3

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Washington v. Glucksburg

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Vacco v. Quill

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Vacco v. Quill. 2

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Terri Schiavo
The Terri Schiavo
case is, so far,
the most
famous and
notorious endof-life case of
the twenty-first
century.
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Terri Schiavo Timeline, 1

Source: http://www.miami.edu/ethics2/schiavo_project.htm

Kathy Cerminara, Nova Southeastern University, Shepard Broad Law Center


Kenneth Goodman, University of Miami Ethics Programs

December 3, 1963 -Theresa (Terri) Marie Schindler born

Novermber 10, 1984


Terri Schindler and Michael Schiavo are married at Our Lady of Good Counsel
Church in Southhampton, Pennsylvania. She was 20; he was 21.

1986
The couple move to St. Petersburg, where Ms. Schiavo's parents had retired.

February 25, 1990


Ms. Schiavo suffers cardiac arrest, apparently caused by a potassium imbalance
and leading to brain damage due to lack of oxygen. She was taken to the Humana
Northside Hospital and was later given a percutaneous endoscopic gastrostomy
(PEG) to provide nutrition and hydration.

May 12, 1990


Ms. Schiavo is discharged from the hospital and taken to the College Park skilled
care and rehabilitation facility.

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Terri Schiavo Timeline, 2

June 18, 1990


Court appoints Michael Schiavo as guardian; Ms. Schiavos parents do not object.
June 30, 1990
Ms. Schiavo is transferred to Bayfront Hospital for further rehabilitation efforts.
September 1990
Ms. Schiavos family brings her home, but three weeks later they return her to the
College Park facility because the family is overwhelmed by Terris care needs.
November 1990
Michael Schiavo takes Ms. Schiavo to California for experimental brain stimulator
treatment, an experimental thalamic stimulator implant in her brain.
January 1991
The Schiavos return to Florida; Ms. Schiavo is moved to the Mediplex Rehabilitation
Center in Brandon where she receives 24-hour care.
July 19, 1991
Ms. Schiavo is transferred to Sable Palms skilled care facility where she receives
continuing neurological testing, and regular and aggressive speech/occupational
therapy through 1994.
May 1992
Ms. Schiavos parents, Robert and Mary Schindler, and Michael Schiavo stop living
together.

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Terri Schiavo Timeline, 3

August 1992
Ms. Schiavo is awarded $250,000 in an out-of-court medical
malpractice settlement with one of her physicians.

November 1992
The jury in the medical malpractice trial against another of Ms.
Schiavo's physicians awards more than one million dollars. In the
end, after attorneys fees and other expenses, Michael Schiavo
received about $300,000 and about $750,000 was put in a trust fund
specifically for Ms. Schiavos medical care.

February 14, 1993


Michael Schiavo and the Schindlers have a falling-out over the
course of therapy for Ms. Schiavo; Michael Schiavo claims that the
Schindlers demand that he share the malpractice money with them.

July 29, 1993


Schindlers attempt to remove Michael Schiavo as Ms. Schiavos
guardian; the court later dismisses the suit.
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Terri Schiavo Timeline, 4

March 1, 1994
First guardian ad litem, John H. Pecarek, submits his report. He states that
Michael Schiavo has acted appropriately and attentively toward Ms.
Schiavo.
May 1998
Michael Schiavo petitions the court to authorize the removal of Ms.
Schiavos PEG tube; the Schindlers oppose, saying that she would want to
remain alive. The court appoints Richard Pearse, Esq., to serve as the
second guardian ad litem for Ms. Schiavo.
December 20, 1998
The second guardian ad litem, Richard Pearse, Esq., issues his report in
which he concludes that Ms. Schiavo is in a persistent vegetative state
with no chance of improvement and that Michael Schiavos decisionmaking may be influenced by the potential to inherit the remainder of Ms.
Schiavos estate.
February 11, 2000
Judge Greer rules that Ms. Schiavo would have chosen to have the PEG
tube removed, and therefore he orders it removed, which, according to
doctors, will cause her death in approximately 7 to 14 days.

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Terri Schiavo Timeline, 5

March 18, 2005

The PEG tube is removed in mid-afternoon. This is the third time the tube has been
removed in accordance with court orders.

March 31, 2005


Ms. Schiavo dies at 9:05 a.m. Her body is transported to the Pinellas Country
Coroners Office for an autopsy.
April 15, 2005
In response to a motion from the media, Judge Greer orders DCF to release redacted
copies of abuse reports regarding Ms. Schiavo. Newspapers report that DCF found
no evidence of abuse after investigating the 89 reports filed before February 18, 2005.
Thirty allegations are outstanding and still being investigated, but Judge Greer
earlier had ruled that those allegations duplicated those previously filed.

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Lawrence M. Hinman
http://ethics.sandiego.edu

21

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
still there or notethical responsibility of scienceespecially
neurosciencesto shed light on the connections between brain
conditions and personhood. We face two questions in cases such as
this:
Is Terri there?
Is a person there?
Central to these questions is the issue of how we define personal identity and
personhood.

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

For everyone, uncertainty about what Terris wishes were. Conflicting


accounts of her wishes. Here we see the importance, not only of
advanced directives and durable power of attorney 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 nutrition and hydration. In this and
numerous related questions about the end of life, hospice and palliative
care programs can shed light on the process of dying.

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Lawrence M. Hinman
http://ethics.sandiego.edu

22

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 requesting PADwere

wanting 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 fatigue) at the time
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 requesting PAD. :

Oregonians Reasons for Requesting 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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http://ethics.sandiego.edu

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Part Two.
The Philosophical Issues

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Some Initial Distinctions

Active vs. Passive Euthanasia


Voluntary, Non-voluntary, and
Involuntary Euthanasia
Assisted vs. Unassisted Euthanasia

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Active vs. Passive Euthanasia

Active euthanasia occurs in those


instances in which someone takes active
means, such as a lethal injection, to bring
about someones death;
Passive euthanasia occurs in those
instances in which someone simply
refuses to intervene in order to prevent
someones death.

03/15/15

Lawrence M. Hinman
http://ethics.sandiego.edu

28

Criticisms of the Active/Passive


Distinction in Euthanasia

Conceptual Clarity
Vague dividing line between active and
passive, depending on notion of
normal care
Principle of double effect

Moral Significance
Does passive euthanasia sometimes
cause more suffering?

03/15/15

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http://ethics.sandiego.edu

29

Active Euthanasia
Typical case for active euthanasia
there is no doubt that the patient will die
soon
the option of passive euthanasia causes
significantly more pain for the patient
(and often the family as well) than active
euthanasia and does nothing to
enhance the remaining life of the
patient, and
passive measures will not bring about
the death of the patient.
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Voluntary, Non-voluntary, and


Involuntary Euthanasia

Voluntary: patient chooses to be put


to death
Non-voluntary: patient is unable to
make a choice at all
Involuntary: patient chooses not to be
put to death, but is anyway

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Assisted vs. Unassisted Euthanasia

Many patients 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 difficult for those who are
left behind.

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32

Overview of Distinctions
Passive
Voluntary Currently legal;

often contained in
living wills

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
Nonnvoluntary: Sometimes legal,
Patient Not but only with court
Able to Choose permission

Involuntary: Not Legal


Against
Patients
Wishes

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Not possible

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Compassion for Suffering

The larger question in many of these


situations is: how do we respond to
suffering?
Hospice and palliative care
Aggressive pain-killing medications
Sitting with the dying
Euthanasia

03/15/15

Lawrence M. Hinman
http://ethics.sandiego.edu

34

The Sanctity of Life

Life is a gift 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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Lawrence M. Hinman
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35

The Right to Die

Do we have a right to die?


Negative right (others may not interfere)
Positive 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 suffer
pointlessly?

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Lawrence M. Hinman
http://ethics.sandiego.edu

36

The Slippery Slope

Worrisome examples from history:


Nazi eugenics program
California eugenics program

Chinese orphanages
Special danger to undervalued groups in
our society

03/15/15

The elderly
Minorities
Persons with disabilities
Groups that are typically discriminated against
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http://ethics.sandiego.edu

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Two Models

A utilitarian model, which emphasizes


consequences
A Kantian model, which emphasizes
autonomy, rights, and respect

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http://ethics.sandiego.edu

38

The Utilitarian Model

Goes back at least


to John Stuart Mill
(1806-73)
The greatest good
for the greatest
number

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Main Tenets

Morality is a matter of consequences


We must count the consequences for
everyone
Everyones suffering 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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40

The Calculus

Morality becomes a
matter of
mathematics,
calculating and
weighing
consequences
Key insight:
consequences matter
The dream: bring
certainty to ethics

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41

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 patients, but about
how effectively it is spent.
Disproportionate amount of money spent
in final months of life.
40 percent of Medicare dollars cover care
for people in the last month.
Nearly one third of terminally ill patients
with insurance used up most or all of their
savings to cover uninsured medical
expenses such as home care.

03/15/15

Concept of medical futility is utilitarian in


character.

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http://ethics.sandiego.edu

42

What is a good death?


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

Jeremy Bentham.
Hedonistic utilitarians:
a good death is a
painless death.
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http://ethics.sandiego.edu

43

Understanding Bizarre Suggestions


All of the following make sense if we think of
end-of-life decisions solely in terms of
reducing painful consequences:
Passive euthanasia sometimes worse than
active euthanasiaJames Rachels
Its over, Debbiejust end the suffering
A duty to die

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http://ethics.sandiego.edu

44

The Kantian Model

Central insight:
people cannot be
treated like mere
things.
Key notions:
Autonomy &
Dignity
Respect
Rights

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45

Autonomy & Respect

Kant felt that human beings were


distinctive: 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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46

Treating 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.
Continued until 1972

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47

Protecting Autonomy

Advanced Directives are designed to protect the autonomy of patients


They derive directly from a Kantian view of what is morally important.

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Lawrence M. Hinman
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48

Autonomy: Who Decides

Kantians emphasize
the importance of a
patients right to
decide
Utilitarians look only
at consequences
In cases such as the
Siamese twins, they
see radically different
worlds.

03/15/15

Lawrence M. Hinman
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49

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
correlatively duty to respect that
right.
Rights
Duties

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50

Types of Rights

Two types of rights


Negative: imposes duties of noninterference on others
Positive: imposes duties of
assistance on others

Health care (including end-oflife care) as a right:


Negative right. Widespread
agreement on this.
Positive right. Much
disagreement. Do people have a
right to health care even when
they cant pay? On whose
shoulders does the duty fall?

03/15/15

Lawrence M. Hinman
http://ethics.sandiego.edu

51

Conclusion

Many of the ethical disagreements


about end-of-life decisions can be
seen as resulting from differing
ethical frameworks, esp. Kantian vs.
utilitarian.
Use these models to understand
where you stand, where your patients
stand, and where your organization
stands in regard to end-of-life issues.

03/15/15

Lawrence M. Hinman
http://ethics.sandiego.edu

52

The Interdisciplinary Character


of Moral Problems:
End-of-life Decisions

Lawrence M. Hinman
Send E-mail to Larry Hinman

University of San Diego


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Lawrence M. Hinman
http://ethics.sandiego.edu

53

Disciplines Considering End-of-Life


Issues

Philosophy
Religious Studies
& Theology
Literature
Psychology
Sociology
Biology

03/15/15

Economics
Political Science
Media Studies
Medicine
Art
Theater

Lawrence M. Hinman
http://ethics.sandiego.edu

54

Euthanasia

The word euthanasia comes from


the Greek words for death (thanatos)
and good or well (eu-). Although
it is often taken in a narrow sense as
referring to assisted suicide, its
original sense is of more interest to
us here:
how can we die well?

03/15/15

Lawrence M. Hinman
http://ethics.sandiego.edu

55

End-of-Life Decisions

Until recently, end-of-life decisions


for most people were easy: You tried
to stay alive as long as you could,
and then you just died.
Today, we are lucky if we are able to
just die. In most cases, difficult
decisions have to be made about
when to stop medical treatment.

03/15/15

Lawrence M. Hinman
http://ethics.sandiego.edu

56

The Biology of Aging and Dying

Biologists and researchers


in related fields are
continually probing into
questions central to our
understanding of the
biological dimensions of
aging and dying, including:
Can the aging process be
slowed down?
On the biology of dying, see
Sherwin Nulands How We
Die.

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57

Psychology

The psychological
dimensions of end-of-life
decisions

Classic source: Elizabeth KblerRoss, On Death and Dying


Stage 1- Shock and denial
Stage 2- Anger
Stage 3- Bargaining
Stage 4- Depression
Stage 5- Acceptance
Typically no clear demarcation b/w stages and
some may occur in different order

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58

Art

Throughout the ages, we have


sought to understand death through
art.

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Art
Throughout the
ages, we have
sought to
understand death
through art.
Drer,
The Four Horsemen
of the Apocalypse

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Art--2
Jack Kevorkian
Nearer My God to Thee

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Music
Whether through
requiems or ragas,
we have always
expressed our
feelings about death
and end-of-life
decisions through
music.
Mahlers
Kindestotenlieder
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Literature

Leo Tolstoy, The


Death of Ivan Illych
See The Oxford Book
of Death
by D. J. Enright

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Theology & Religious Studies

Consider the various ways in which


different religious traditions provide us
with guidance in making difficult
decisions at the end of life.

03/15/15

Christian
Jewish
Buddhist
Muslim
Native American
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Economics
Consider economic factors that have
had an impact on end-of-life issues:
Increasing cost of health care
Greater social mobility
Percentage of health care dollars
spent in last few months of life

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65

Sociology

Study of different social aspects of dying,


such as varying mortality rates for various
groups in various nations, percentage of
accidental deaths, etc.
See Michael Kearls Guide to Sociological
Thanatalogy:
http://www.trinity.edu/~mkearl/death.html

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66

Anthropology

Anthropologists
have long been
concerned with
death and the
rituals surrounding
it.
Celebrations of
Death: The
Anthropology of
Mortuary Rituals.
Edited by by Peter
Metcalf, Richard
Huntington

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