Ethical Issues in Caring for Refugees and Immigrants

1. Ethical Issues in Caring for Refugees and Immigrants Fern R. Hauck, MD, MS Essentials of Family Medicine III September 28, 2011

2. Objectives • Discuss common ethical challenges in caring for refugees • Focus on: • patient autonomy • role of family members • delivering bad news • identifying patient preferences regarding disclosure of information • View film clip and discuss above issues in relation to the patient in the film • Discuss residents’ cases focusing on ethical dilemmas

3. Bioethics Theory and Practice • Rely heavily on Western principles of respect for the rights and wishes of individual patients. • Promotion of end of life decision making by an autonomous, fully informed patient (ie, open disclosure of diagnosis, prognosis, advance care directives, etc.)

4. How Does Cultural Diversity Mesh with Western Bioethics? • Encounters between patients and providers from diverse cultural backgrounds are routine. • As a result, value conflicts are more commonplace. • Within bioethics, little attention has been placed, until recently, on cultural diversity. • But, anthropological studies have shown that people of different cultural backgrounds vary considerably in their perceptions and interpretations of symptoms, beliefs about appropriate treatments, reaction to pain and suffering, and understanding of the nature and relationship between healer and patient.

5. Disclosing a Diagnosis of Terminal Illness • Blackhall et al (1995): 800 individuals >65: • African Americans (88%) and European Americans (87%) more likely than Mexican Americans (65%) and Korean Americans (47%) to believe that a patient should be told a terminal diagnosis • MA and KA more likely to believe that doctors should not discuss death and dying with the patients as it could be harmful • MA and KA favored a family-centered model of medical decision making compared with AA and EU favoring a patient autonomy model

6. Disclosing a Diagnosis of Terminal Illness (Continued) • Orona et al (1994): • Mexican American and Chinese American families felt it was their duty to protect their relatives from cancer diagnosis to keep their remaining time free of worry. It is appropriate to keep information from the patient. • Good et al (1990): • Interviewed 51 oncologists from U.S. teaching hospitals: strong emphasis on patient ‘s being told the truth about their diagnosis , importance of good communication and partnership with the patient.

7. Advance Directives • Majority of Navajo patients considered discussing advance planning for end of life decisions a dangerous violation of Navajo values. • European Americans more likely than others to complete living will and durable power of attorney • African Americans and Mexican Americans more likely to want to be kept alive regardless of how ill they were • Korean Americans and Mexican Americans less likely to believe that the patient, instead of the family or physician, should make decisions about life-sustaining technologies • Among study participants who knew what a living will and durable power of attorney were, execution of advance care directives varied by ethnicity: EAs (40%); MAs (22%); AAs (17%), KAs (0%) (All references can be found in Marshall et al, 1998)

8. Advance Directives • Thus, in the U.S., it appears that individuals from minority backgrounds are less likely to adopt the autonomy-based bioethics beliefs that have become standard practice in many U.S. hospitals and clinics. • Reasons for less use of advance directives not certain: may be lack of interest, lack of cultural fit, fundamental mistrust of the health care system. • Caution: there will be great diversity within a cultural group so cannot make assumptions about an individual patient.

9. Communication StrategiesIn Delivering Bad News • Bad news is any information that adversely alters one’s expectations for the future. • Delivering bad news is stressful for professionals. • Doctors who take the time to deliver bad news in a caring and professional manner not only emotionally support their patients, but are personally rewarded and may avoid unhelpful interventions. (Source: Barclay et al. 2007)

10. Communication StrategiesIn Delivering Bad News • Patients perceive receiving bad news as stressful, but still desire information about their condition. • Patients vary in how much information they want. • Prognostic discussions are the hardest, and many patients don’t understand common statistical terms and also mistakenly place themselves in better prognostic groups. • Maintaining hope is culturally driven. • In some cultures, nondisclosure is the norm, but the patients still want to know the “truth” but this would be told in an indirect way. • Some groups w/ nondisclosure preference: Asian, Navajo, Central and South American, Eastern European.

11. Communication StrategiesIn Delivering Bad News • One approach is to have discussions with patients when they are healthy to determine the degree of “truth telling” that they would desire in the future regarding illnesses. • Listen to the patient and family, engage in dialogue and negotiation about preferences for truth disclosure, decision making, and family involvement. • Deliver news in a way that maintains hope.

12. Decision Making at the End of Life: Family-Centered vs. Patient-Centered Decision Making • Families are usually involved in all aspects of decision making, regardless of cultural background and norms about full disclosure. • Patient-centered: patient makes decisions, with family supporting, persuading, helping. • Family-centered: family makes decisions, taking into account what is best for patient and family. • In many cultures, patients may expect physicians to assume a more directive role. • Physicians have to be explicit when they are seeking input from patients, and state that they are willing to offer their opinion about best course of action.

13. Summary of Cultural Approach to Patients Regarding Medical Decision Making • Family Meeting: introduce yourself (and team) to all people present. Create a warm and comfortable environment. Avoid being judgmental. • Find out if the patient is an autonomous decision maker or would prefer the family, or someone else in particular, such as a community or religious leader, to be involved: “ How much do you want your family to be involved in making decisions regarding your healthcare (such as tests, medications, other treatment). “Is there anyone in particular who we should talk to about your healthcare besides you—someone who makes decisions in your family or community?”

14. Summary of Cultural Approach to Patients Regarding Medical Decision Making (Continued) • In some states, patients can waive the right to know (legal documents can be signed in this case) when the family wants to withhold information. • In Virginia, this is not allowed. Thus, it is important to have discussions with patient and family to get a general sense of what the patient would want to do under different circumstances. When a decision has to be made, the family could talk with the patient, recall the general discussion and affirm the treatment direction. Source: Green AR, Betancourt JR. Cultural competence: a patient-based approach to caring for immigrants. In: Walker PF, Barnett ED. Immigrant Medicine. Philadelphia: Saunders Elsevier, 2007.

15. Hold Your Breath • Afghan patient with stomach cancer. • Questions to ponder: • Role of patient’s Muslim faith? • How did Mr. Kochi respond to his dx? How did his family respond? • Why were there misunderstandings about treatment options?