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. CONFLICT Decision making

3. What is Culture?

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

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

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

7. Example Japanese and Truth-telling Stereotype: Japanese do not tell patients they are dying. Family makes decisions 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… 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 Useful in exposing others to perspectives of representative group Problems Problems Representative may or may not be content expert Representative may or may not be content expert Risk of stereotyping, despite admonitions to contrary Risk of stereotyping, despite admonitions to contrary Emphasis on cultural others – not ones own cultures Emphasis on cultural others – not ones own cultures Educational focus on attitudes, not more generally applicable skills Educational focus on attitudes, not more generally applicable skills

9. Culture of Biomedicine Tensions Individualism Individualism Autonomy Autonomy Disease in the individual Disease in the individual Consumerism Consumerism Egalitarianism Egalitarianism Health care as a right Health care as a right Mechanistic/technologic Reductionist Paternalistic Bureaucratic Capitalism Health care as commodity 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 Abstract principles Abstract principles Individualism Individualism Rights based Rights based Self-determination Self-determination Egalitarianism – ethics committees Egalitarianism – ethics committees Rules- policies, regulations, laws – esp. United States – part of corporate culture Rules- policies, regulations, laws – esp. United States – part of corporate culture Emphasis on:

11. Major Principles of Medical Ethics BeneficenceNonmaleficence Autonomy 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 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 Few Americans filled out advance directives Doctors didnt seem to pay much attention to them Doctors didnt seem to pay much attention to them Bad things were happening to people at the end- of-life 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 Requires health care facilities to raise the issue of advance directives with patients on admission Big questions: Big questions: How effective were or are advance directives in improving healthcare outcomes? How effective were or are advance directives in improving healthcare outcomes? So, how are we doing...

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

18. Advance Directives –not bad, but… Argument for use and implementation not anthropologically based Argument for use and implementation not anthropologically based May not be as important as advocates thought as a vehicle to improved healthcare outcomes May not be as important as advocates thought as a vehicle to improved healthcare outcomes System issues now appear more important 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 Misunderstandings and miscommunication History – Lack of trust History – Lack of trust Knowledge deficits Knowledge deficits Lack of competencies /skills Lack of competencies /skills Lack of options or knowledge of options Lack of options or knowledge of options

20. Example: Truth-telling

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

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

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

24. What, Why, How, Who continued... How How Do you think the illness should be treated? Do you think the illness should be treated? Who Who Should one turn to for help? Should one turn to for help? Should be involved in care and decision making? 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 Ethics are important, but cannot exist in a vacuum Approaching all disputes as representing ethical dilemmas reflects a Western cultural bias Approaching all disputes as representing ethical dilemmas reflects a Western cultural bias Culture permeates everything we do Culture permeates everything we do Most difficult is appreciating our own cultural biases Most difficult is appreciating our own cultural biases Skill training, especially in cross-cultural communication can go a long ways in resolving disputes peacefully Skill training, especially in cross-cultural communication can go a long ways in resolving disputes peacefully