Cultural Competence at the End of Life

1. Cultural Competence at the End of Life Yvonne M. Davila, MSN, RN

2. Death is not a medical event. It is a personal and family story of profound choices, of momentous words, and telling sciences. Dr. Steve Miles

3. Cultural Competency as a strategy • Allows HCP to understand, appreciate, & work with individuals from cultures other than their own Why do HCPs Need to be Trained in Cultural Competency?www.omhrc.gov/claswww.nap.eduwww.hhs.gov/ocr/lep/guide.htmlwww.jointcommission.org

4. Responding to current & projected demographic changes in the U.S. • Eliminating long-standing disparities in the health status of people • Improving quality of services • Meeting legislative, regulatory, and accreditation mandates • Gaining a competitive edge in the marketplace • Decreasing the likelihood of liability/malpractice claims

5. Better quality of life-trajectory of serious illness • Reduced non-beneficial care near death • Adaptation to medical to illness realities • Enhanced goal-consistent care • Positive family outcomes • Reduced costs EVIDENCE that Early Discussions about Serious IllnessGoals of Care & EOL Preferences Improves Care

6. Indications for Communication • Solid tumor with metastases, hypercalcemia, or spinal cord compression • CHF, class III or IV with 2/hospitalizations • CKD, on dialysis, age 75 years/older • COPD, on home oxygen w/FEV1 < 35% predicted • All patients whose physicians answer “no” to the follow question: “Would you be surprised if this patient died in the next year?” Communication for Patient with Serious and Life-Threatening IllnessAmerican College of Physicians High Value Care Advice

7. Systematic integration of structured discussions in the EHR • Training & Education • Use of qualified interpreters • Dedicated & Structured sections in the EHR • Quality & Timing of conversations about serious illness care goals • Offer practical advice for clinicians about quality communication (serious illness care plan) Promising Practices

8. Language Barriers • Availability & effective use of written translated materials & appropriate use of interpreters • Conflicts regarding death & dying beliefs and values • Conflicts about revealing diagnosis or whom information is shared with McNamra (1997)

9. Patients want the truth about prognosis • You will not harm your patient by talking about EOL issues • Anxiety is normal for both patient and clinician during these discussions • Patients have goals and priorities besides living longer • Learning about patient’s goals and priorities empowers you to provide better care Basic Principles of EOL Communication

10. Culturally Competent Skills • Self-awareness** • Treating each encounter as a cross cultural experience • Recognize & challenge personal beliefs and assumptions • Respect values & beliefs which differ from one‘s own Cultural diversity in relation to dying, death, and grief will manifest itself on the basis of family/social background, gender, age, race/ethnicity, and religion or spirituality

11. Perspective Death & Dying • Health & Suffering • Hospice & Palliative Care • Perception of Pain (Pain Relief) • Acceptance of Western health care practices and their use of alternative traditional practices • Role of Spiritual & Religious beliefs and practices • Role of the family* • Communication * • Role of the patient in problem-solving and in the process of decision-making (Lopez, 2007) Cultural Factors to Consider in End of Life Care

12. Cultural Factors to Consider in EOL Death as a Taboo Subject Death Accepting Death Denying Death Defying

13. Cultural Factors to Consider in EOL Care • Collective Decision Making

14. Cultural Factors to Consider in EOL Care • Perception of the Physician’s Status and health care experience in the country of origin

15. Cultural Factors to Consider in EOL Care • Perception of Pain and Request for Pain Relief “Pain” “Hurt” “Ache”

16. Cultural Factors to Consider in EOL Care • Role of Religion and Faith

17. Explanatory Model Questions to clarify cultural generalizations and provide insight into the patient’s personal meaning of the illness • What do you think caused your illness? • Why do you think your illness started when it did? • What do you think this illness does to you? • How severe is your illness? • What are the main problems your illness has caused you? • What do you fear most about your illness? • What kind of treatment would you like to have? • What are the most important results that you would like to get from your treatment? Arthur Kleinmann’s 8 questions

18. ETHNICSFramework E-Explanation T-Treatment H-Healers N-Negotiate I-Intervention C-Collaborate S-Spirituality Kobylarz FA, Heath JM, Like RC, The ETHNICS Mnemonic; A Clinical Tool for Ethnogeriatric Education,” Journal of the American Geriatrics Society 2002, Sep: 50(9):1582-9

19. Concept of the illness explanatory model developed by Dr. Kleinman • Domains cultural aspect of health & illness • Does not replace the standard medical history taking process • Framework to facilitate communication during the clinical encounter • Designed to be integrated into the routine 15-minute visit • Each letter represents a cross cultural domain to explore • Used in any setting ETHNICS Framework for Culturally Appropriate Care

20. Determines how patients perceive their illness, condition, or symptoms • Facilitates communication • Direct question to be asked: Why do you think you have this? • Probe questions to be asked: -What do others say about these symptoms? -Do you know anyone else who has had this kind of problem?

21. Inquires about interventions (medical and alternative) • Used before and during the clinical encounter • Direct question: What have you tried for this…? • Probe questions: What kind of medicines, home remedies, or treatments have you tried for this illness? Is there anything you eat, drink, or do on a regular basis to stay healthy? What kind of treatment are you seeking from me? • Treatment • TREATMENT

22. Asks about ALL the HCPs (medical & alternative) • Before and in the clinical encounter • Direct question: Who else l have you sought help from for this? • Probe question: • Have you sought help from alternative or folk healers, friends, or other people who are not doctors for help with your problems? HEALERS

23. Resuscitation • Feeding & Hydration

24. Inquiry to establish whether patients are willing to work actively with the HCP to see outcomes in a jointly acceptable manner • Builds on previously identified beliefs • Seek outcomes in a jointly acceptable manner that incorporate your patient’s beliefs • Direct question: How best do you think I can help you? Negotiate

25. Discussion between patients and the HCP about a mutually proposed course of action • Direct statement: “This is what I think needs to be done now.” Intervention

26. Allows patients and HCP to mutually discuss how the therapeutic • Direct question: “How can we work together on this?”

27. Provides the HCP with an understanding of how a patient’s faith or religion can affect their symptoms • Direct question: How can faith/religion/spirituality help you with this…..? Tell me about your spiritual life. How can your spiritual beliefs help you with this? Spirituality

28. Translating Into PracticeChallenges • Focuses on the acute and chronic visit • Awareness of cultural issues on • Establishing treatment priorities • Influencing adherence • Addressing EOL care • Systemic, institutional, interpersonal barriers • Disability related issues • Communication impairments

29. Developing cultural competence is an ongoing, life-long journey for individuals, families, organizations, and communities Bureau of Primary Health Care Resources and Services Administration, Department of Health and Human Services, Cultural Competence: a Journey.

30. “Maintaining cultural humility, avoiding stereotyping, engaging in mutually respectful communication, and fostering empowerment in relationships are critical.”