1. EPEC™-O Education in Palliative and End-of-Life Care - Oncology Cultural Considerations When Caring for African Americans

2. EPEC  - Oncology Education in Palliative and End-of-life Care - Oncology: Cultural Considerations When Caring for African Americans Module 13-AA: Advance Care Planning Module 13-AA: Advance Care Planning

3. l Define advance care planning; explain its importance and limitations. l Describe differences in attitudes and behaviors toward the Advance Care Planning Process between African Americans and Whites l Recognize the importance of culture and spiritual beliefs in decision- making l Define advance care planning; explain its importance and limitations. l Describe differences in attitudes and behaviors toward the Advance Care Planning Process between African Americans and Whites l Recognize the importance of culture and spiritual beliefs in decision- making Objectives

4. l Describe barriers to completion of advance directives for African Americans l Describe the steps of advance care planning. l Utilize planning to help the patient put affairs in order and complete advance directives. l Describe barriers to completion of advance directives for African Americans l Describe the steps of advance care planning. l Utilize planning to help the patient put affairs in order and complete advance directives. Objectives continued

5. Video

6. Definitions: l Advance directives (ADs): prior directives from patient for health care at a future time when patient is unable to communicate wishes  Instructional o Living Will o Values History o Medical Directive  Proxy designation o DPOAHC l Advance directives (ADs): prior directives from patient for health care at a future time when patient is unable to communicate wishes  Instructional o Living Will o Values History o Medical Directive  Proxy designation o DPOAHC

7. Definitions continued: l Best Interest Standard: applied when the surrogate decision-maker does not know what the incompetent patient would have chosen for him/herself l Substituted Judgment Doctrine: Surrogate decision-maker makes the decision the incompetent patient would make if he/she were competent to do so. l Best Interest Standard: applied when the surrogate decision-maker does not know what the incompetent patient would have chosen for him/herself l Substituted Judgment Doctrine: Surrogate decision-maker makes the decision the incompetent patient would make if he/she were competent to do so.

8. Importance of Advance Directives l Empowers patients to make decisions for future medical care in the event they are unable to do so later. l Avoid turmoil that occurs among families, providers when patient’s treatment preferences are unknown. l Empowers patients to make decisions for future medical care in the event they are unable to do so later. l Avoid turmoil that occurs among families, providers when patient’s treatment preferences are unknown.

9. Patient Self Determination Act l Enacted 1991 l Federally funded health facilities inform patient of right to ADs l Implementation to letter/ not spirit of law l Enacted 1991 l Federally funded health facilities inform patient of right to ADs l Implementation to letter/ not spirit of law

10. Advance Directive Completion Rates SettingWhitesAfrican Americans NH75%41% Community42%12% Hospice93%79%

11. Family –Centered Decision-Making

12. Advance Directive Use Among African Americans l Lack of familiarity with ADs: new concept, unaware of option, misinformation ( associated with euthanasia/ physician-assisted suicide) l Cultural differences: individual autonomy vs. family-centered decision-making, socialization against expression of views l Lack of familiarity with ADs: new concept, unaware of option, misinformation ( associated with euthanasia/ physician-assisted suicide) l Cultural differences: individual autonomy vs. family-centered decision-making, socialization against expression of views

13. Advance Directive Use Among African Americans continued l Spiritual beliefs: In conflict with life- limiting choices l Difficulty understanding: ADs written above average health literacy level l Institutional/ legal barriers: Forms availability, some states require notarization l Spiritual beliefs: In conflict with life- limiting choices l Difficulty understanding: ADs written above average health literacy level l Institutional/ legal barriers: Forms availability, some states require notarization

14. Advance Directive Use Among African Americans continued l Communication disparities: physicians lack skills to address; quality of communication differs across ethnic groups l Lack of trust in healthcare system: past and present inequalities and injustices l Communication disparities: physicians lack skills to address; quality of communication differs across ethnic groups l Lack of trust in healthcare system: past and present inequalities and injustices

15. Other Problems With Advance Directives l Less than 50% severely terminally ill have them l Only 12% developed with healthcare provider input l Physicians unaware ADs exist (in 75% of cases where patient has one) l Too vague/ poor agreement between patient & surrogate re: care options l Not invoked until 11 th hour or not honored l Less than 50% severely terminally ill have them l Only 12% developed with healthcare provider input l Physicians unaware ADs exist (in 75% of cases where patient has one) l Too vague/ poor agreement between patient & surrogate re: care options l Not invoked until 11 th hour or not honored

16. Proxy Decision- making Is Stressful

17. Why Engage in Advance Care Planning? l Gives patient a voice when not able to express preferences l Associated with use of less aggressive care at end-of-life l Avoids ineffective care l Improves quality of life for patient l Lessens proxy stress and morbidity l Improves patient/ family relationship with provider l Gives patient a voice when not able to express preferences l Associated with use of less aggressive care at end-of-life l Avoids ineffective care l Improves quality of life for patient l Lessens proxy stress and morbidity l Improves patient/ family relationship with provider

18. What Works to Increase Completion Rate for Advance Directives? l Informative interventions alone DON’T WORK l Need to combine with interactive interventions over time l Nurse Practitioner led intervention in a Nursing Home resulted in increased completion rates with no disparities across different ethnicities l Informative interventions alone DON’T WORK l Need to combine with interactive interventions over time l Nurse Practitioner led intervention in a Nursing Home resulted in increased completion rates with no disparities across different ethnicities

19. What Works to Increase Completion Rates continued l Routine palliative consults for advanced cancer patients in a public hospital (also increased hospice referrals) l SPIRIT: 1 hr. nurse-led intervention for African Americans with renal failure l Health literacy interventions  Video in setting of dementia  Redesigned forms: 5 th grade reading level; graphics; values clarification; expanded treatment preferences l Routine palliative consults for advanced cancer patients in a public hospital (also increased hospice referrals) l SPIRIT: 1 hr. nurse-led intervention for African Americans with renal failure l Health literacy interventions  Video in setting of dementia  Redesigned forms: 5 th grade reading level; graphics; values clarification; expanded treatment preferences

20. Nurse-led Interventions Work

21. Advance Care Planning The process of planning for future medical care in the event that the patient is unable to make his or her own decisions.

22. Process of Advance Care Planning Akin to behavior change model: PrecontemplationContemplation Preparation/ values clarification Action: Discuss with family Discuss with HCP Document AD/ proxy Maintenance Reflection on choices

23. Redesigned Advanced Directive Form [Sudore et al 2007] Ethnicity ContemplatedDiscussed w family/friends Discussed w MD Documented AD African American 58%44%21%19% White 50%51%13%9%

24. Five Steps for Successful Advance Care Planning 1. Introduce the topic. 2. Engage in structured discussions. 3. Document patient preferences. 4. Review, update. 5. Apply directives when need arises. 1. Introduce the topic. 2. Engage in structured discussions. 3. Document patient preferences. 4. Review, update. 5. Apply directives when need arises.

25. Step 1: Introduce the Topic l Be straightforward and routine. l Determine patient familiarity. l Explain the process. l Determine comfort level. l Determine health care proxy. l Be straightforward and routine. l Determine patient familiarity. l Explain the process. l Determine comfort level. l Determine health care proxy.

26. Step 2: Engage in Structured Discussions l Health care proxy decision maker(s) present l Elicit patient’s values, goals l Describe scenarios, options for care l Use a worksheet l Check for inconsistencies l Health care proxy decision maker(s) present l Elicit patient’s values, goals l Describe scenarios, options for care l Use a worksheet l Check for inconsistencies

27. Role of the Health Care Proxy l Entrusted to speak for the patient l Involved in the discussions l Must be willing, able to take the health care proxy role l Entrusted to speak for the patient l Involved in the discussions l Must be willing, able to take the health care proxy role

28. Patient and Health Care Proxy Education l Define key medical terms. l Explain benefits, burdens of treatments. Life support may only be short-term. Any intervention can be refused Recovery cannot always be predicted. l Define key medical terms. l Explain benefits, burdens of treatments. Life support may only be short-term. Any intervention can be refused Recovery cannot always be predicted.

29. Elicit Patient’s Values and Goals l Ask about past experiences. l Describe possible scenarios. l Ask patient to write a letter explaining how things should be handled. l Ask about past experiences. l Describe possible scenarios. l Ask patient to write a letter explaining how things should be handled.

30. Use a Validated Advisory Document l A number are available (e.g., Five Wishes) l Easy to use l Reduces chance for omissions l Patients, health care proxy, family can take home l A number are available (e.g., Five Wishes) l Easy to use l Reduces chance for omissions l Patients, health care proxy, family can take home

31. Step 3: Document Patient Preferences l Review the advance directive. l Sign the documentation. l Enter it into the medical record. l Recommend statutory documents. l Ensure portability. l Review the advance directive. l Sign the documentation. l Enter it into the medical record. l Recommend statutory documents. l Ensure portability.

32. Step 4: Review and Update l Follow up periodically. l Note major life events. l Discuss and document changes. l Follow up periodically. l Note major life events. l Discuss and document changes.

33. Determining Capacity Can the patient: l Understand the relevant information? l Appreciate the situation and its consequences? Can the patient: l Understand the relevant information? l Appreciate the situation and its consequences?

34. Step 5: Apply Directives l Determine applicability l Read and interpret the advance directive l Consult with the health care proxy l Consult the ethics committee for disagreements l Carry out the treatment plan l Determine applicability l Read and interpret the advance directive l Consult with the health care proxy l Consult the ethics committee for disagreements l Carry out the treatment plan

35. Common Pitfalls: l Failing to plan l Failing to include health care proxy in discussions l Failing to clarify patient preferences l Having too narrow a focus l Ignoring communicative patients l Making assumptions/ failing to read advance directives l Failing to plan l Failing to include health care proxy in discussions l Failing to clarify patient preferences l Having too narrow a focus l Ignoring communicative patients l Making assumptions/ failing to read advance directives

36. Reviewing Advance Directives with the Proxy Decision-maker is Crucial

37. Preparing for the Last Stages of Life l Advance practical planning  Financial and legal affairs  Gift giving  Organ donations  Funeral arrangements l Choice of caregivers l Choice of care setting l Advance practical planning  Financial and legal affairs  Gift giving  Organ donations  Funeral arrangements l Choice of caregivers l Choice of care setting

38. Preparing for the Last Stages of Life continued l Educating/training patients, families, and caregivers  Communication  Tasks of caring  What to expect o Physiologic changes, events o Symptom management l Educating/training patients, families, and caregivers  Communication  Tasks of caring  What to expect o Physiologic changes, events o Symptom management

39. Summary Employing an individualized culturally sensitive process of advance care planning with African Americans can improve the decision- making process, ease anxiety, improve relationships with the healthcare team, and lessen the burden on the health care proxy.