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

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….

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

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.

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.

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

Objective 1 Identify common end-of-life decisions Hospice social workers help patients and families make. 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

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

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

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

Co-Case Management/Team Work NHPCO  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 See Handout Objective 2

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

End-of-Life Care Planning* NHPCO  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 See Handout Objective 2

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

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

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

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

Objective 4 What challenges does the decision-making process with patients and family pose? Identify frustrations, challenges or barriers you encounter as a Hospice social worker in addressing end-of- life decisions with patients and families 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? decisions? See Handout Objective 4

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

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

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

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? 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?

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?

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

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

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?

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

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

So you have to talk—how to get started  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…”

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

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

Objective 6 Your Personal Plan What do I need/want? Goal/endResources/ Strategies to achieve goal Knowledge Skills Attitudes See Handout Objective 7

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.

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