Ethical Issues in EndofLife Decisions: A Guide to Understanding Differences

1
Ethical Issues in End-of-Life Decisions A Guide
to Understanding Differences
2
An Exciting Timefor Ethics

• New technologies

• Policy vacuums

• Ethical legal quandaries

3
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

4
Goals of Todays Talk

• Provide a framework for understanding why and how
  intelligent people of good will can disagree so
  fundamentally about end-of-life decisions.
• Better understand the positions of other people,
  including patients
• Better understand our own intuitions

5
Two Models

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

6
The Utilitarian Model

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

7
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.

8
The Calculus

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

9
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.

10
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.

11
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

12
The Kantian Model

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

13
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.

14
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

15
Protecting Autonomy

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

16
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.

17
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

18
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?

19
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.

20
A Quick SurveyQuestion 1

• First, in regard to your own position.
• How many of you identify primarily with
  utilitarian ethical thinking?
• How many of you find yourselves identifying
  primarily with Kants ethical standpoint?
• How many of you identify with a moral perspective
  that you feel is neither utilitarian nor Kantian?

21
A Quick SurveyQuestion 2

• Now think about your patients moral
  orientations, insofar as you know what these are.
  
• How many of you think your patients see their own
  moral decisions about end of life issues
  primarily in utilitarian terms?
• How many of you think your patients see their own
  moral decisions about end of life issues
  primarily in Kantian terms or autonomy and
  respect?
• How many of you think your patients see their own
  moral decisions about end of life issues
  primarily in terms that are neither Kantian nor
  utilitarian?

22
A Quick Survey Question 3

• Third, Id be interested in your perceptions of
  your organizations moral orientation.
• How many of you think Sharp-Rees Steely sees
  decisions about end of life issues primarily in
  utilitarian terms?
• How many of you think Sharp-Rees Steely sees
  decisions about end of life issues primarily in
  Kantian terms?
• How many of you think Sharp-Rees Steely sees
  decisions about end of life issues primarily in
  terms that are neither Kantian nor utilitarian?

23
A Quick SurveyOverview
24
A Quick Survey Results

• Finally, Id be interested in discrepancies.
• How many had a straight line acrossall
  utilitarian or all Kantian?
• How many had a difference in moral orientations
  between themselves and their patients?
• How many had a difference in moral orientations
  between themselves and their organization?
• How many had a difference in moral orientations
  between their patients and their organization?

25
Appendix 1From whole to parts
Priest,MinisterRabbi
Soul
Mind
Person
Psychologist
ENT Ophthalmologist UrologistOncologist
Psychiatrist
Body
Doctor
26
Appendix 2Stakeholders in the Decision-making
Process
PatientsFamily
Physician
Patient
Insurer/HMO

• End-of-life decisions involve more than the
  patient and the physician.

27
Web Resources
28
Web Resources,2

• Before I Die
• With Bill Moyers

• http//www.pbs.org/wnet/bid/

29
Web Resources, 3

• The End of Life Explaining Death in America
• http//www.npr.org/programs/death/

30
This presentation

• This presentation will be available at
• http//ethics.acusd.edu/presentations/sharp/