Beyond Medical Ethics at the End of Life

1
Beyond Medical Ethics at the End of Life

• James Hallenbeck, MD

2
Goals

• Review major principles of Western medical ethics
• Discuss problems with advance directive decision
  making
• Suggest a conceptual framework for considering
  cultural issues that may be a work

3
Major Principles of Medical ethics

• Autonomy
• Beneficence
• Nonmaleficence
• Justice

4
Advance Directive Decision Making- key
concepts...

• Surrogate Decision making
• Substituted Judgment

Where did these ideas come from? What values do
they reflect? Does everybody share these values?
5
Medical ethics and Advance Directives

• Priority on autonomy reflects the value of
  individualism in Western society
• Unclear how many Americans share this value
  system

6
Advance Directives

• A problem for autonomy-
• Question How can you act autonomously when you
  are in a coma?
• Answer Surrogate decision making.

7
Advance Directives

• Few Americans filled out advance directives
• Doctors didnt seem to pay much attention to them
• Solution Patient Self-Determination Act of 1990
• Requires health care facilities to raise the
  issue of advanced directives with patients on
  admission

8
Patient Self-Determination Act of 1990
How are we doing...

• 20 Adults have Adv Dir
• When completed, often not recognized or followed
  by providers
• 26 geriatric patients recognized on admission
  Morrison, JAMA 1995
• May not have major impact on care

9
SUPPORT STUDY

• 4804 Seriously ill patients
• 569 had Adv Directives
• 36 contained special instructions
• 22 of these had recommendations to forgo
  treatment as applied to the patients actual
  situation
• In only of these 9 cases was care consistent with
  specific instructions

Teno, J Am Geriatr Soc, 1997
10
Cultural Issues at the End-of-Life

• Cultural sub-groups come into contact in the
  provision of care
• Sub-groups unable to provide for their own
• Patients, families and providers prevented from
  acting autonomously
• The stakes are high
• Issues addressed at EOL at core of cultural
  values
• Big bucks

11
Situation- Patient doing poorly in ICU

• Patient on ventilator, but unlikely to survive
• Patient sedated/unable to speak for self
• You believe extubation and comfort care would be
  most appropriate
• You go to talk with patients spouse about this

12
Possible reasons for asking that everything be
done

• Denial
• Language or communication barrier
• Different value system

13
Value System 1

• Dont share believe in futility
• Futility seen as test of faith
• May place greater value on life-preservation than
  comfort per se
• Distrust of medical system
• Fear of discrimination

14
Value System 2-Role Obligation

• Belief that the greatest good occurs if one is
  true to ones role
• Role obligation makes substituted judgment a
  difficult concept
• May value interdependence over independence

15
Cultural Competence

• Learn about differences in groups commonly
  encountered
• Reflection on ones own culture
• Resources to assist
• Cultural guides
• Texts
• Communication/Negotiation skills

16
SUMMARY
Advance care planning will occur infrequently as
long as patients, potential proxy decision
makers, and clinicians fail to understand their
intent, do not accept the underlying values
behind their use, find it difficult to discuss
this topic, and have no access to the mechanisms
for accomplishing the communication or
directive.
Perlman, Hastings C Report, 1994