Cultural Issues in Ethical Decision Making

1. Cultural Issues in Ethical Decision Making James Hallenbeck, MD Assistant Professor of Medicine Stanford University Director, Palliative Care Services, VA Palo Alto HCS

2. Ethics Culture CONFLICT Decision making

3. What is Culture?

4. Ethnicity Religion National Origin Nationality Urban/Rural Socioeconomic status Education Occupation Community role Family role Gender Sexual orientation Age/generation Role in healthcare Illness role Cancer HIV Dementia etc. CultureMore than EthnicityMore than “Beliefs and Practices”

5. Culture – as a Verb • Means of communication • Language • Contextual • Non-verbal • Spatial/temporal • Human relations • Trust – mistrust • Power – Powerless

6. Culture – Dynamic Processes • History/evolution • Example – Changes in how become ill, age and die force cultures to change and adapt • Tensions within cultural groups

7. Example Japanese and Truth-telling • Stereotype: ‘Japanese do not tell patients they are dying. Family makes decisions • Tension: Japanese often will say, “We Japanese do not tell people that they are dying” However, a majority will also say they personally would like to know if they are dying…

8. The Cultural “Representative” • Useful in exposing others to perspectives of representative group • Problems • Representative may or may not be content expert • Risk of stereotyping, despite admonitions to contrary • Emphasis on cultural others – not one’s own cultures • Educational focus on attitudes, not more generally applicable skills

9. Individualism Autonomy Disease in the individual Consumerism Egalitarianism Health care as a right Mechanistic/technologic Reductionist Paternalistic Bureaucratic Capitalism Health care as commodity Culture of BiomedicineTensions Lacking in modern biomedicine Focus on suffering as object of medicine Inclusion of concept of “life-force” in model Understanding illness as something transcending the individual

10. “Culture” of Western Bioethics Emphasis on: • Abstract principles • Individualism • Rights based • Self-determination • Egalitarianism – ethics committees • Rules- policies, regulations, laws – esp. United States – part of “corporate culture”

11. Major Principles of Medical Ethics Autonomy Interdependence Beneficence Nonmaleficence Justice

12. Medical Ethics and Advance Directives

13. Problem How does one act autonomously, if unable to make decisions? • Answer: others will represent wishes using substituted judgment in a process of surrogate decision making

14. Advance Directives – the Problem • Few Americans filled out advance directives • Doctors didn’t seem to pay much attention to them • Bad things were happening to people at the end-of-life

15. The Solution: Patient Self-Determination Act of 1990 • Requires health care facilities to raise the issue of advance directives with patients on admission • Big questions: • How effective were or are advance directives in improving healthcare outcomes? So, how are we doing...

16. SUPPORT STUDY • 4804 Seriously ill patients • 569 had Advance Directives (12%) • 36 contained special instructions • 22 of these had recommendations to forgo treatment as applied to the patient’s actual situation • In only of these 9 cases was care consistent with specific instructions Teno, J Am Geriatr Soc, 1997

17. Why? Death Denial Culture Educational deficiencies Stubborn, cold-hearted doctors

18. Advance Directives –not bad, but… • Argument for use and implementation not anthropologically based • May not be as important as advocates thought as a vehicle to improved healthcare outcomes • System issues now appear more important Lynn, J., et al., Rethinking fundamental assumptions: SUPPORT's implications for future reform. Study to Understand Prognoses and Preferences and Risks of Treatment. J Am Geriatr Soc, 2000. 48(5 Suppl): p. S214-21.

19. “Pseudo-ethics”Conflicting ethics not always the underlying cause of disagreements • Misunderstandings and miscommunication • History – Lack of trust • Knowledge deficits • Lack of competencies /skills • Lack of options or knowledge of options

20. Example: Truth-telling Don't tell gramma!

21. A Narrowly Defined Ethical Dilemma • Importance of autonomy • The patient has “a right to know” • Pending decision (chemotherapy, DNR, hospice referral) requires informed consent Ethics Consult!

22. Dealing with Issues of Truth Telling • Statement of respect • Why has this request been made? • Where does the patient stand? • Statement of own values • Prepare/permission to negotiate • Set ground rules • Talk with patient To defer one’s autonomy can be an act of autonomy

23. Explanatory Model Questions • What • Do you call the problem? • Do you think the sickness does? • Do you think the natural course of the illness is? • Is it you hope for/fear? • Why • Do you believe this problem occurred?

24. What, Why, How, Whocontinued... • How • Do you think the illness should be treated? • Who • Should one turn to for help? • Should be involved in care and decision making? Kleinman, A., Culture, illness and cure: clinical lessons from anthropologic and cross-cultural research. Annals of Internal Medicine, 1978. 88: p. 251-258.

25. Summary • Ethics are important, but cannot exist in a vacuum • Approaching all disputes as representing ethical dilemmas reflects a Western cultural bias • Culture permeates everything we do • Most difficult is appreciating our own cultural biases • Skill training, especially in cross-cultural communication can go a long ways in resolving disputes peacefully