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.
• Close to one-third of all Medicare dollars are
  spent on end-of-life care

5
An Increasing Interest inEnd-of-life Issues

• The Bill Moyers series on dying Sept. , 2000.
• JAMA issues on End-of-life decisions
• New England Journal of Medicine

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

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Part One.Cases and Laws
8
Karen Ann Quinlan

• Karen Ann Quinlan

9
Karen Ann Quinlan, Web Resources
10
Cruzan
11
Cruzan, 2
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Cruzan, 3
13
Washington v. Glucksburg
14
Vacco v. Quill
15
Vacco v. Quill. 2
16
Terri Schiavo

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

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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.

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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

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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 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.

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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, 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.

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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 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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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
25
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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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.

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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
• 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

• 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

32
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.

33
Overview of Distinctions
34
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

35
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)

36
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?

37
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

38
Two Models

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

39
The Utilitarian Model

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

40
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.

41
The Calculus

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

42
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.

43
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.

44
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

45
The Kantian Model

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

46
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.

47
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

48
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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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.

50
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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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?

52
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.

53
The Interdisciplinary Characterof Moral
ProblemsEnd-of-life Decisions
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Disciplines Considering End-of-Life Issues

• Philosophy
• Religious Studies Theology
• Literature
• Psychology
• Sociology
• Biology

• Economics
• Political Science
• Media Studies
• Medicine
• Art
• Theater

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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?

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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.

57
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.

58
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

59
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.
• Dürer, The Four Horsemen of the Apocalypse

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Art--2
Jack KevorkianNearer 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 Deathby D. J. Enright

64
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

65
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

66
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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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