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Title: Decisions at the End of Life


1
Decisions at the End of Life
2
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 life-sustaining treatment

3
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.

4
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.

5
An Increasing Interest inEnd-of-life Issues
  • The upcoming Bill Moyers series on dying starts
    Sunday evening, Sept. 10, 2000.
  • Upcoming JAMA issue on End-of-life decisions

6
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

7
Karen Ann Quinlan
  • Karen Ann Quinlan

8
Karen Ann Quinlan, Web Resources
9
Cruzan
10
Cruzan, 2
11
Cruzan, 3
12
Washington v. Glucksburg
13
Vacco v. Quill
14
Vacco v. Quill. 2
15
Terri Schiavo
  • The Terri Schiavo case is, so far, the most
    famous and notorious end-of-life case of the
    twenty-first century.

16
Terri Schiavo Timeline, 1
  • Source http//www.miami.edu/ethics2/schiavo_proje
    ct.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.
  •  
  • 1986The couple move to St. Petersburg, where Ms.
    Schiavo's parents had retired.
  •  
  • February 25, 1990Ms. 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.

17
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

18
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.

19
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 decision-making 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.

20
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, 2005Ms. Schiavo dies at 905 a.m. Her
    body is transported to the Pinellas Country
    Coroners Office for an autopsy.April 15,
    2005In 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.

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.

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

23
Some Initial Distinctions
  • Active vs. Passive Euthanasia
  • Voluntary, Non-voluntary, and Involuntary
    Euthanasia
  • Assisted vs. Unassisted Euthanasia

24
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.

25
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?

26
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.

27
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

28
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.

29
Overview of Distinctions
30
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

31
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)

32
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?

33
The Slippery Slope
  • Worrisome examples from history
  • Nazi eugenics program
  • California eugenics program
  • Chinese orphanages
  • Special danger to undervalued groups in our
    society
  • The elderly
  • Minorities
  • Persons with disabilities
  • Groups that are typically discriminated against

34
Two Models
  • A utilitarian model, which emphasizes
    consequences
  • A Kantian model, which emphasizes autonomy,
    rights, and respect

35
The Utilitarian Model
  • Goes back at least to John Stuart Mill (1806-73)
  • The greatest good for the greatest number

36
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.

37
The Calculus
  • Morality becomes a matter of mathematics,
    calculating and weighing consequences
  • Key insight consequences matter
  • The dream bring certainty to ethics

38
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.
  • Concept of medical futility is utilitarian in
    character.

39
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.

40
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

41
The Kantian Model
  • Central insight people cannot be treated like
    mere things.
  • Key notions
  • Autonomy Dignity
  • Respect
  • Rights

42
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.

43
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

44
Protecting Autonomy
  • Advanced Directives are designed to protect the
    autonomy of patients
  • They derive directly from a Kantian view of what
    is morally important.

45
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.

46
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

47
Types of Rights
  • Two types of rights
  • Negative imposes duties of non-interference on
    others
  • Positive imposes duties of assistance on others
  • Health care (including end-of-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 cant
    pay? On whose shoulders does the duty fall?

48
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.

49
The Interdisciplinary Characterof Moral
ProblemsEnd-of-life Decisions
50
Disciplines Considering End-of-Life Issues
  • Philosophy
  • Religious Studies Theology
  • Literature
  • Psychology
  • Sociology
  • Biology
  • Economics
  • Political Science
  • Media Studies
  • Medicine
  • Art
  • Theater

51
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?

52
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.

53
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.

54
Psychology
  • The psychological dimensions of end-of-life
    decisions
  • Classic source Elizabeth Kübler-Ross, 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

55
Art
  • Throughout the ages, we have sought to understand
    death through art.

56
Art
  • Throughout the ages, we have sought to understand
    death through art.
  • Dürer, The Four Horsemen of the Apocalypse

57
Art--2
Jack KevorkianNearer My God to Thee
58
Music
  • Whether through requiems or ragas, we have always
    expressed our feelings about death and
    end-of-life decisions through music.
  • Mahlers Kindestotenlieder

59
Literature
  • Leo Tolstoy, The Death of Ivan Illych
  • See The Oxford Book of Deathby D. J. Enright

60
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

61
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

62
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

63
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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