1. Textbook of Palliative Care Communication Section II: Health Literacy

2. CULTURAL HUMILITY Chapter Eleven

3. Cultural Humility Requires lifelong learning and critical self- reflection Recognizes and mitigates power imbalances in the patient-provider relationship Institutional consistency

4. Cultural Humility Concepts and Tools Self-awareness – Use open-ended questions to learn about patient/family – Observe family interactions (who talks, who attends meetings?) – Engage in reflective journaling to develop self- awareness Power imbalances – Observe family interactions (hierarchies, power imbalances among family members) – Ask open-ended questions to better understand decision-making preferences

5. Explore your own family attitudes and beliefs about death and dying Consider your family’s perspective of death and dying: – What does your family believe happens to an individual after death? – How are those family members who have died remembered or considered in the family? – What are the family’s rituals or preparations for dying?

6. Barriers to Cultural Humility Limited experiences with other cultures Lack of training Time and practice constraints Racism, religious hegemony, and multiple cultural prejudices continue to exist

7. STATISTICAL HEALTH LITERACY, NUMERACY, VISUAL COMMUNICATION Chapter Twelve

8. Health Literacy Health Literacy is an individual’s ability to obtain, understand, and use health information and services in order to make appropriate health decisions within a healthcare system Limited health literacy impacts – palliative care utilization – communication between providers, patients, families, other caregivers – Self-care and caregiving outside clinical settings

9. Patient and Caregiver Tools Tailor the format and modality of information presentation – Free of medical jargon, 6 th grade reading level – Linguistically and culturally sensitive – Video and audio tools useful – Question Prompt Lists (list of structured questions for patients to use) – Patient Navigators – Patient Decision Aids (structured and personalized information about treatment options)

10. Care-setting Level Tools Focus in palliative care has been on communicating prognostic information and treatment options Using numbers to communicate probability – Present as frequency (3 out of 10 patients) – Use data with graphs or other visual aids – Assess communication about risks/prognosis “What is your understanding of your illness?”

11. Community and Policy Level Tools Social networks (faith-based organizations, work places, community centers) can be used to communicate information about palliative care Policy needs to be created to realign payment systems to incentivize addressing health literacy issues – Training and care standards in health settings

12. PATIENT- AND FAMILY-CENTERED WRITTEN COMMUNICATION Chapter Thirteen

13. Health literacy and written information Health Literary is often measured by a quantifiable measure Authors argue for patient-centered approach with health literacy depending on: – Subject matter – Emotional involvement These factors result in high and low literacy levels that reflect patient’s ability to talk, engage others, and they may impact health status. Written materials can improve and support health literacy and empower patients

14. Text Types for Written Palliative Care Communication One-to-one – Email between provider and patient/family member One-to-many – Written leaflets/pamphlets Many-to-many – Online forums and support groups

15. One-to-one: Email Facilitates two-way updates, increases access, advice, and communication Opportunity for patient to express feelings; facilitates communication when patient’s speech is compromised; and serves as written record for recall Pitfalls – access, computer literacy, and physical capabilities of technology – use varies among patients creating inequity

16. One-to-many: End of Life Leaflets General education about disease and information on dying process Key issue is understandability for patient and family Goal is to better prepare family, however, few resources include emotional/spiritual care Pitfalls: – Comprehensibility, especially among elderly

17. Many-to-many: Online Forums Health communication without a healthcare professional present Patients and caregivers seek advice from each other, confirmation and affirmation of feelings and experiences Caregiver support tool, addresses social needs Pitfalls – Patient’s disease progression and symptoms may restrict use – Requires Internet access and computer literacy

18. HEALTH DISPARITIES Chapter 14

19. Health Disparities Health disparities are systematic differences in the mental or physical health or health risks in which members of social groups, such as racial/ethnic minorities, experience worse health or greater health risk than other groups. Such disparities may result from inequitable economic, political, social, communication, and/or psychological processes.

20. Patterns of Disparities Patterns of disparity across groups emerge in: Use of palliative care services Geographic or medical settings Pain management Disenrollment from hospice Advance directives

21. Factors Contributing to Disparities Societal, hospital, and provider availability of services, costs related to care, and hospital staff diversity and sensitivity to the needs of minorities Patient and family factors socio-demographic characteristics, preferences for care, knowledge of care, religious/spiritual beliefs about death and the end of life, and family expectations Patient-provider interpersonal communication attitudes and perceptions of each other, care, and clinical communication

22. Current and Future Research Limitations of current research – Exclusive focus on hospice setting – Research comparing non-Hispanic White populations with African Americans Future research is needed – Across a variety of topics (e.g., pain management) – Across different patient populations (e.g., immigrants, patients with mental or physical disabilities) – That is evidence-based, theoretically grounded

23. THE ROLE OF COMMUNICATION AND INFORMATION IN SYMPTOM MANAGEMENT Chapter Fifteen

24. Symptom Management Symptoms and side effects are referred to as negative effects in this chapter Negative effects involve the physiological and psychosocial impact on patient and family wellbeing

25. The Nature of Negative Effects Physiological presence of pain Psychosocial level is the symbolic meaning of pain Chronic pain (physical dimension) that can lead to depression or anxiety (symbolic dimension)

26. Negative Effects Impact family caregivers – Physical burden of caregiving Individual differences – Cultural norms influence variation in pain experiences – Pain is subjective to each person and includes symbolic meaning (concepts of stigma)

27. Communication and Symptom Management Providers, patients, and caregivers must share the cause, intensity, and intervention strategies for pain management to be effective Critical feedback is imperative Providing emotional support is essential Encourage patient self-efficacy Recommend websites and online support groups