Helping patients and Families with End-of-Life Decisions

1. Helping patients and Families with End-of-Life Decisions A Competency for Hospice Social Workers Gail Henson, Ph.D. Hospice Institute, Bellarmine University

2. Why have such a workshop about facilitating end-of-life discussions? • You as the Hospice Social Worker have significant training in family systems and in psychosocial strategies that are especially valuable. • Patient autonomy is paramount and you understand that. • Advances in medicine & technology make decisions increasingly complex. • Conflicting values between patient and family or among family members • Limits in family knowledge about or comprehension of treatment options, prognosis • Limits in family resources • Accommodation of cultural perspectives on end-of-life • Knowledge, skills and attitudes can always grow in order to deal with….

3. As social workers you…. Manage a LOT! Let’s see what that looks like! Interactive exercise 1 See Handout Introduction

4. Objectives for workshop • 1. Identify common end-of-life decisions Hospice social workers help patients and families make • 2. Identify NHPCO Core Clinical Skills for Hospice/Palliative Care Social Workers and National Association of Social Workers Standards of Social Work Practice in Palliative and End of Life Care relevant to your experience at Hospice. • 3. Identify knowledge, skills, and attitudes valuable to develop as Hospice social workers in helping patients and families make end-of-life decisions.

5. Objectives • 4. Identify individual challenges or barriers you encounter as a Hospice social worker discussing end-of-life decisions with patients and families. • 5. Evaluate case studies about Hospice social workers helping patients and families make end-of-life decisions. • 6. Design a plan and strategies for developing knowledge, skills, attitudes, values to make discussions related to end of life decision-making more effective for patients and families. • 7. Demonstrate skill in facilitating end-of-life discussions between patients and families.

6. So what do you need to talk with families more effectively about EOL Decisions? • Knowledge? • Skills? • Dispositions?

7. Objective 1 Identify common end-of-life decisions Hospice social workers help patients and families make. Has the nature of decisions or the manner of decision-making changed with Open Access or the Experience Model? See Handout Objective 1

8. Objective 2 Professional Standards • NASW Standards of Social Work practice in Palliative and End of Life Care • NHPCO Core Clinical Skills for Hospice/Palliative Care Social Workers • JCAHO Standards related to Social Work Practice and competency See Handout Objective 2

9. NHPCO Core Clinical Skills for Hospice/Palliative Care Social Workers • 1. Assessment process • 2. Co-Case Management/Team work • 3. Interventions/counseling • 4. End-of-life Care Planning * • NHPCO Standards relate to JCAHO Standards, an important issue in this tightly regulated work. See Handout Objective 2

10. Psychosocial history Mental health status Sexuality Spirituality Risk Assessment Care Plan Development Long-Term Care Planning Assessment Process- NHPCO See Handout Objective 2

11. Hospice Program criteria Confidentiality Advocacy Proactively accessing resources Insurance Benefit Care planning with multiple disciplines Working closely, proactively with RN/Case manager Documentation Infection control Co-Case Management/Team WorkNHPCO See Handout Objective 2

12. Working with Diversity Interviewing skills Supportive counseling with adults, children, adolescents Patient/family education Life Review Crisis intervention Suicide preventions/ interventions Symbolic messages of the dying Loss and grief theory Interventions/counselingNHPCO See Handout Objective 2

13. Knowledge of DPOA, Living Wills, Directives to Physicians Decision-making capacity/patient representatives Provision of Care for Dependents Signs and Symptoms of Impending Death Rituals and Practices Funeral Planning This is our emphasis End-of-Life Care Planning*NHPCO See Handout Objective 2

14. Ethics and values Knowledge Assessment Intervention/treatment planning Attitude/self-awareness Empowerment and advocacy Documentation Interdisciplinary teamwork Cultural competence Continuing education Supervision, leadership, training Objective 2 NASW Standards of Social Work practice in Palliative and End of Life Care— See Handout Objective 2

15. Exercise for Objective 2 • Using the NHPCO and NASW guidelines, put an asterisk to identify two areas which you demonstrate competence (a, b) • Which are most relevant to your work as a Hospice social worker? See Handout Objective 2

16. Objective of workshop 3 Identify knowledge, skills, attitudes, values critical to Hospice social workers in discussing end of life decisions See Handout Objective 3

17. Objective 3 What do you need? • What knowledge, skills, attitudes do you routinely use in discussing EOL issues with patients and their families? • Please journal on your handout. • Then discuss with your table. See Handout Objective 3

18. Identify frustrations, challenges or barriers you encounter as a Hospice social worker in addressing end-of-life decisions with patients and families Decision issues Style issues Word choice issues Decision-making ability Conversation openers Wrong decisions? Objective 4 What challenges does the decision-making process with patients and family pose? See Handout Objective 4

19. The mere thought of death Makes patient and family decision-making tough for all concerned. Just makes you want to……..sometimes.

20. Death In the Sickroom Munch Have you experienced a situation like this?

21. “The Dead Mother” Edward Munch “If I take her off the feeding tube, she’ll starve to death.”

22. Some of the decisions social workers express the need for patients to decide include *guardianship for children *who will be healthcare surrogates *advance directives *writing a will *not making an active decision about treatment What else would you add? a.Issue-related challenges. In what situations have you experienced frustration when patients don’t make a decision—or do not communicate a decision they may have made privately?

23. Decision-making • Do you have any other comments about the frustration expressed by one Hospice social worker with patients who won’t make decisions? “Not to decide is to decide,” said the social worker. • Can you identify any decision-making situations in which the challenges/barriers/or frustrations might come from within you? • Can you identify any decision-making situations in which the challenge or barrier might come from the patient, family or another source?

24. Patient associated barriers to clear end-of-life treatment decisions • Cultural diversity (Chinese American=disrespect to discuss EOL) • Lack of familiarity with health care system • Educational background • Desire to delegate decisions entirely to family. • Awareness of hospice services • Trust in family members • Lack of understanding about what CPR, IVs, artificial hydration really do. Haley, “Family issues…” 2002

25. Challenges in Decision-making • Communication style issues. Sometimes communication styles can affect the effectiveness of your interactions with the family and patient when making end-of-life decisions. • What situations might require you to take a more direct style? • What situations or decisions might make you take a non-directive style? • Word choice

26. Challenges in decision-making • Decision making strategies. Decision-making about end-of-life issues often is a chaotic, stress-filled time for all participants. Numerous models of decision-making exist, such as the one below. • 1. Decision identification • 2. Decision analysis • 3. Solution criteria • 4. Solution suggestions • 5. Solution evaluation & selection • 6. Solution implementation • Identify one situation in which you have helped a patient and/or family make a decision about some aspect of the end-of-life. How did the decision actually get made?

27. Decisions involving medical futility • Miscommunication • Conflict: family member or health care surrogate may have different goals, values* • Misunderstandings over prognosis • Personal factors like guilt, distrust • The family member/surrogate may stand to benefit from death EPEC, Module 10

28. O.A.S.I.S. Exercise • Open— • Articulatethe question/problem/issue (does the person perceive there to be an issue/problem/question) • Search for solutions • Integrate options into action • Study and evaluate

29. Allow the patient to talk about whatever—they may give you an opening… “When I’m no longer here, I want you to have this…” “It seems like every friend I have is gone…” Answer such leading statements with responses that invite more conversation “You seem to feel that life is getting short…” “It must be getting very lonely for you…” So you have to talk—how to get started

30. Case studies • Please examine the case studies in the materials provided. • What decisions have to be made? • Identify the knowledge, skills, and attitudes the Hospice social worker must have to deal with them. • Demonstrate some possible responses to this case. See Handout Objectives 5, 7 This addresses Objectives 5 and 7

31. Now make it personal…… Objective 6 Develop a personal plan for developing your knowledge, skills, or attitudes to use when helping patients and families make end-of-life decisions See Handout Objective 6

32. Objective 6 Your Personal Plan See Handout Objective 7

33. Role playing • Select one of the frustrating or challenging situations in end-of-life decision making with patients and/or families that you described earlier. • As a table, demonstrate an effective way to respond to the situation.

34. Helping patients and Families with End-of-Life Decisions A Competency for Hospice Social Workers Gail Henson, Ph.D. Hospice Institute, Bellarmine University