Beyond Medical Ethics at the End of Life James Hallenbeck, MD

Goals zReview major principles of Western medical ethics zDiscuss problems with advance directive decision making zSuggest a conceptual framework for considering cultural issues that may be a work

Major Principles of Medical ethics zAutonomy zBeneficence zNonmaleficence zJustice

Advance Directive Decision Making- key concepts... zSurrogate Decision making zSubstituted Judgment Where did these ideas come from? What values do they reflect? Does everybody share these values?

Medical ethics and Advance Directives zPriority on autonomy reflects the value of individualism in Western society zUnclear how many Americans share this value system

Advance Directives zA problem for autonomy- yQuestion: How can you act autonomously when you are in a coma? yAnswer: Surrogate decision making.

Advance Directives zFew Americans filled out advance directives zDoctors didn’t seem to pay much attention to them zSolution: Patient Self- Determination Act of 1990 yRequires health care facilities to raise the issue of advanced directives with patients on admission

Patient Self- Determination Act of 1990 z20% Adults have Adv Dir zWhen completed, often not recognized or followed by providers y26% geriatric patients recognized on admission Morrison, JAMA 1995 zMay not have major impact on care How are we doing...

SUPPORT STUDY z4804 Seriously ill patients y569 had Adv Directives x36 contained special instructions 22 of these had recommendations to forgo treatment as applied to the patient’s actual situation zIn only of these 9 cases was care consistent with specific instructions Teno, J Am Geriatr Soc, 1997

Cultural Issues at the End-of-Life zCultural sub-groups come into contact in the provision of care zSub-groups unable to “provide for their own” zPatients, families and providers prevented from acting autonomously zThe stakes are high yIssues addressed at EOL at core of cultural values yBig bucks

Situation- Patient doing poorly in ICU zPatient on ventilator, but unlikely to survive zPatient sedated/unable to speak for self zYou believe extubation and comfort care would be most appropriate zYou go to talk with patient’s spouse about this

Possible reasons for asking that everything be done zDenial zLanguage or communication barrier zDifferent value system

Value System #1 zDon’t share believe in futility yFutility seen as test of faith zMay place greater value on life-preservation than comfort per se zDistrust of medical system yFear of discrimination

Value System #2- Role Obligation zBelief that the greatest good occurs if one is true to one’s role zRole obligation makes substituted judgment a difficult concept zMay value interdependence over independence

Cultural Competence zLearn about differences in groups commonly encountered zReflection on one’s own culture zResources to assist yCultural guides yTexts zCommunication/Negotiation skills

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