Cultural Considerations in Palliative and End of Life Care

1. Cultural Considerations in Palliative and End of Life Care Lori Hedges, MS, APRN,BC-PCM Advocate Illinois Masonic Medical Center

2. Culture Defined • A system of shared symbols • Provides security, integrity, belonging • Constantly evolving

3. Palliative Care & Cultural Context • Making meaning of illness • Not limited to races or ethnicity • Increasing U.S. diversity • Health disparities

5. Cultural Competence • Components • Importance of interdisciplinary approach

6. Cultural Assessment • Cultural attributes • Variation within groups

7. A Mother's Touch

8. Components within Culture • Ethnicity • Race • Gender • Age • Religion and spiritually • Sexual orientation

9. Fathers Watch

10. Components within Culture (cont.) • Differing abilities • Financial status • Place of residency • Employment • Education level • Cause of death

11. Components of Cultural Assessment • Patient/family/community • Birthplace • Ethnic identity, community • Decision making • Language and communication

12. Components of Cultural Assessment (cont.) • Religion • Food preferences/prohibitions • Economic situation • Health beliefs regarding death, grief, pain

13. Self Assessment of Culture • Self assessment • Cultural beliefs of co-workers

14. Self reflection • 1. How do you identify yourself racially, ethnically, and culturally? • 2. When were you first aware of your own culture? • 3. What is the first memory you have of someone dying in your family? • 4. What were the rituals, practices or behaviors that your family observed at that time? • 5. What aspects of your cultural background do you feel strengthen your caring for dying patients and their families?

15. Cultural Considerations of Communication • Use of interpreters • Conversation style • Personal space • Eye contact

16. Cultural Considerations of Communication (cont.) • Touch • Time orientation • View of healthcare professionals • Learning styles

17. Role of the Family • Who makes decisions? • Who is included in discussions? • Is full disclosure acceptable?

18. Cultural Influences on Decision-Making • Beliefs about autonomy and beneficence differ • Disclosure of diagnosis and prognosis

19. Language Use at the End of Life • "Discontinuation" • "DNR" • "Withdrawing/withholding"

20. When Cultures Clash • Clashes occur • Suggestions

22. Hispanic/Latino • Stoicism highly regarded • Extended family • Religion is important • Belief in afterlife • Rituals following death

24. African American • Trust may be an issue • Fear of addiction • Use of home remedies • Elders held in high regard • Hospital death may be preferred • Belief in afterlife

25. Conclusion • Many dimensions of culture • Major influence on end-of-life care • Self-assessment of culture • Interdisciplinary care facilitates • Culturally sensitive care

27. Lost In Translation • “Do not enter the lift backwards, & only when lit up.” (Seen on an elevator in Germany) • “Drop your trousers here for best results.” (Seen in a Bangkok dry cleaner’s) • “We are pleased to announce that the manager has personally passed all the water served here.” (In an Acapulco hotel) • “You are invited to take advantage of the women who are employed to clean the rooms.” (In a Japanese hotel)

28. Case Study 1 • Mr. Li is a 65-year-old Chinese-American man, diagnosed one year ago with lung cancer. The patient has been told he has a “lung disease.” Despite the fact that his disease is clearly advancing, the family insists that he not be told of his diagnosis or prognosis. Mr. Li is losing weight (20 lbs in the previous two months) and is having increasing back pain and difficulty swallowing. He lives with his wife in a second floor apartment. His two sons are both married and live in the area. He denies any religious affiliation. The health care team is increasingly frustrated with the fact that Mr. Li is not able to fully participate in decisions about his care and is considering an ethics consultation.

29. Case Study 1 • Discussion Questions: • What are your impressions regarding this scenario? Is it legal to not inform the patient of his diagnosis? • How might the team approach Mr. Li regarding issues of diagnosis and prognosis? • Describe ways in which issues related to patient self-determination and informed consent can be approached that respect patient and family values

30. Case Study 1 • While performing a thorough physical assessment during a recent clinic visit, the nurse observes round bruises over several areas of the patient’s back. As Mr. Li’s disease progresses, he becomes more weak and unable to move from bed. When asked how he is feeling, he always whispers “fine” and denies any symptoms. His wife, Mrs. Li, is tearful that her husband’s appetite is diminished. She believes he will be cured if only he will eat and that he must try harder. The nurse observes the patient having difficulty swallowing, potentially aspirating, when given soft food, and explains this to Mrs. Li, who appears unable to understand.

31. Case Study 1 • During a home visit by the home care nurse and social worker, the sons also are present. Mr. Li is minimally conscious, febrile, tachycardic, and diaphoretic. The oldest son tries to encourage Mr. Li to eat. He refuses to listen to the hospice nurse about the possible outcome of feeding his father and the gravity of his father’s condition. He angrily states that his father is going to get better and requests antibiotics for the fever. The youngest son, speaking privately to the nurse, understands that his father is dying. When the nurse speaks about preparations for Mr. Li’s death, the wife and oldest son are unable to participate in the conversation. The next day, the family admits Mr. Li to the hospital, where he dies within 24 hours.

32. Case Study 1 • Discussion Questions: • What are essential components of cultural assessment for this family? • What aspects of Chinese-American culture are displayed in this scenario? • How should the nurse respond to the patients use of moxibustion? • (Note: Moxibustion is a form of traditional Chinese medicine in which a cup is placed over the skin and the top of the cup is heated. This often produces a round burn-like bruise. It is believed to relieve toxins. It is occasionally misunderstood by healthcare professionals as a sign of physical abuse. These may also be Mongolian spots, which are discolorations of the skin that look like bruises.) • What could an interdisciplinary team have done to improve care at the end of life?

33. Case Study 2 • Ms. Thomas is a 54-year-old African-American widow, mother and grandmother who lived with her daughter and 4 grandchildren in a 4-floor walk up apartment. She is an active member of her church community, and friends commented that she had so much energy that she exhausted all of them just being around her. At age 51, she was diagnosed with non-Hodgkin’s lymphoma. Busy with raising her grandchildren, 4 months went by before she sought attention for her symptoms and was diagnosed. Despite aggressive treatments with chemotherapy and radiation, her disease progressed, and she was considering undergoing a bone marrow transplant (BMT).

34. Case Study 2 • Climbing the stairs to the apartment one afternoon, she became very short of breath and collapsed. Her ten year-old granddaughter called 9-1-1. At the hospital, she was minimally responsive and in severe respiratory distress. She was intubated and transferred to the ICU. A family meeting with the oncology and ICU team was called to discuss Mrs. Thomas’s advanced condition, the fact that she would probably not survive a BMT, and to decide on goals of care.

35. Case Study 2 • Fifteen family members arrived, including her daughter, pre-teen granddaughter and grandson, 3 nieces, 4 nephews, several friends from her church and the minister. On being asked that only the immediate family participate in the meeting, the family and friends became angry, and insisted that all of them be involved in this discussion.

36. Case Study 2 • Discussion Questions: • 1. Detail the physical, psychological/emotional, social and spiritual aspects of the case. • 2. Discuss ways that a team might anticipate possible concerns that may arise during the course • of an illness? How would you go about assessment and reassessment of key areas? • 3. Discuss what kind of assessments and attention to continuity of care might improve • communication in this case. • 4. What are other concerns you have with this case and what will happen next?