Transcript Decisions at the End of Life

Decisions at the
End of Life
Lawrence M. Hinman
Send E-mail to Larry Hinman
University of San Diego
7/17/2015
Lawrence M. Hinman
http://ethics.sandiego.edu
1
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
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The Changing Medical Situation
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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.
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The Changing Insurance Situation
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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
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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
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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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What are we striving for?
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Euthanasia means “a good death,”
“dying well.”
What is a good death?
– Peaceful
– Painless
– Lucid
– With loved ones gathered around
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Part One.
Cases and Laws
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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
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Source: http://www.miami.edu/ethics2/schiavo_project.htm
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Kathy Cerminara, Nova Southeastern University, Shepard Broad Law Center
Kenneth Goodman, University of Miami Ethics Programs
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December 3, 1963 -Theresa (Terri) Marie Schindler born
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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.
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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.
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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
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June 18, 1990
Court appoints Michael Schiavo as guardian; Ms. Schiavo’s parents do not object.
June 30, 1990
Ms. Schiavo is transferred to Bayfront Hospital for further rehabilitation efforts.
September 1990
Ms. Schiavo’s family brings her home, but three weeks later they return her to the
College Park facility because the family is “overwhelmed by Terri’s 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. Schiavo’s parents, Robert and Mary Schindler, and Michael Schiavo stop living
together.
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Terri Schiavo Timeline, 3
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August 1992
Ms. Schiavo is awarded $250,000 in an out-of-court medical
malpractice settlement with one of her physicians.
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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. Schiavo’s medical care.
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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.
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July 29, 1993
Schindlers attempt to remove Michael Schiavo as Ms. Schiavo’s
guardian; the court later dismisses the suit.
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Terri Schiavo Timeline, 4
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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.
Schiavo’s 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 Schiavo’s decisionmaking may be influenced by the potential to inherit the remainder of Ms.
Schiavo’s 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
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March 18, 2005
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The PEG tube is removed in mid-afternoon. This is the third time the tube has been
removed in accordance with court orders.
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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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The Schiavo Case:
Sources of Uncertainty
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For the public, great uncertainty about what the actual facts of the
case are—ethical responsibility of the media
For the family, uncertainty and disagreement about whether she was
still there or not—ethical responsibility of science—especially
neurosciences—to 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?
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For everyone, uncertainty about what Terri’s 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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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
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“The most important reasons for requesting PAD…were
–
–
–
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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 one’s
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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Part Two.
The Philosophical Issues
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Some Initial Distinctions
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Active vs. Passive Euthanasia
Voluntary, Non-voluntary, and
Involuntary Euthanasia
Assisted vs. Unassisted Euthanasia
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Active vs. Passive Euthanasia
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Active euthanasia occurs in those
instances in which someone takes active
means, such as a lethal injection, to bring
about someone’s death;
Passive euthanasia occurs in those
instances in which someone simply
refuses to intervene in order to prevent
someone’s death.
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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
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Moral Significance
– Does passive euthanasia sometimes
cause more suffering?
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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
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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
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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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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
Patient’s
Wishes
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Compassion for Suffering
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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
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The Sanctity of Life
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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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The Right to Die
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Do we have a right to die?
– Negative right (others may not interfere)
– Positive right (others must help)
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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?
Isn’t it cruel to let people suffer
pointlessly?
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The Slippery Slope
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Worrisome examples from history:
– Nazi eugenics program
• California eugenics program
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– Chinese orphanages
Special danger to undervalued groups in
our society
–
–
–
–
The elderly
Minorities
Persons with disabilities
Groups that are typically discriminated against
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Two Models
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A utilitarian model, which emphasizes
consequences
A Kantian model, which emphasizes
autonomy, rights, and respect
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The Utilitarian Model
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Goes back at least
to John Stuart Mill
(1806-73)
The greatest good
for the greatest
number
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Main Tenets
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Morality is a matter of consequences
We must count the consequences for
everyone
Everyone’s 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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The Calculus
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Morality becomes a
matter of
mathematics,
calculating and
weighing
consequences
Key insight:
consequences matter
The dream: bring
certainty to ethics
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How much care should be given at
the end of life?
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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.
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Concept of medical futility is utilitarian 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.
Hedonistic utilitarians:
a good death is a
painless death.
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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 euthanasia—James Rachels
 “It’s over, Debbie”—just end the suffering
 A duty to die
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The Kantian Model
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Central insight:
people cannot be
treated like mere
things.
Key notions:
– Autonomy &
Dignity
– Respect
– Rights
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Autonomy & Respect
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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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Treating People as Mere Means
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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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Protecting Autonomy
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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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Autonomy: Who Decides
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Kantians emphasize
the importance of a
patient’s right to
decide
Utilitarians look only
at consequences
In cases such as the
Siamese twins, they
see radically different
worlds.
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From Autonomy to Rights
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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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Types of Rights
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Two types of rights
– Negative: imposes duties of
non-interference on others
– Positive: imposes duties of
assistance on others
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Health care (including endof-life 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 can’t pay?
On whose shoulders does
the duty fall?
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Conclusion
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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 endof-life issues.
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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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Disciplines Considering End-of-Life
Issues
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Philosophy
Religious Studies
& Theology
Literature
Psychology
Sociology
Biology
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Economics
Political Science
Media Studies
Medicine
Art
Theater
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Euthanasia
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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?
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End-of-Life Decisions
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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.
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The Biology of Aging and Dying
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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 Nuland’s How We
Die.
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Psychology
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The psychological
dimensions of end-of-life
decisions
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Classic source: Elizabeth KüblerRoss, 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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Art
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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.
Dürer,
“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.
Mahler’s
Kindestotenlieder
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Literature
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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.
–
–
–
–
–
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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Sociology
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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 Kearl’s Guide to Sociological
Thanatalogy:
http://www.trinity.edu/~mkearl/death.html
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Anthropology
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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
7/17/2015
Lawrence M. Hinman
http://ethics.sandiego.edu
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