1. Palliative Care with Older Adults Section 2: The Role of Social Work in Palliative Care Grace Christ, MSW, PhD Susan Blacker, MSW,RSW Resource Review for Teaching Resource Review for Teaching

2. Social Work Role: Unique Contribution to Palliative Care Social work comprises the largest group of mental health professionals working with advanced illness in both hospice and palliative care, and in a broad range of other health care and social organizations and agencies. Social work values, knowledge, and skills are a natural fit with principles of palliative care: e.g., client self-determination, biopsychosocial spiritual perspective, family and social systems, cultural competence, social justice, and alleviation of health disparities.

3. Social workers have expert knowledge about navigating medical and social systems; Are experts in communication with families, and between patient, family, and healthcare team, guiding the team in their interactions with them; Address mental health needs, grief, and psychosocial and spiritual aspects of well-being; Are experts in helping individuals and families cope in crises and in providing intensive counseling for those confronted by advanced illness. Social Work Role: Unique Contribution in Palliative Care

4. Assessment of Needs and Preferences for Palliative Care in the U.S. Population Surveys of US population on patients’ and families’ needs and preferences support expansion of palliative care, continue to inform professionals, and stimulate research on variations among cultural groupings. For example, marginalized groups who feel they have been poorly treated by the health system for other medical issues may refuse to sign advanced directives giving the physician permission to withhold treatment.

5. What did 454 family caregivers say they wanted for their family member who died?  Loved one’s wishes honored  Inclusion in decision process  Support/assistance at home  Practical help (transportation, medicines, equipment)  Personal care needs (bathing, feeding, toileting) Assessment of Needs and Preferences for Palliative Care in the U.S. Population

6. Recent surveys of US population What did patients want during terminal illness?  Pain and symptom control  Avoid inappropriate prolongation of the dying process  Achieve a sense of control  Relieve burdens on family Singer, Martin, & Kelner, 1999 Assessment of Needs and Preferences for Palliative Care in the U.S. Population

7.  Honest information  24/7 access  To be listened to  Privacy  To be remembered and contacted after the death Tolle, 1999, www.ohsu.edu/ethics Assessment of Needs and Preferences for Palliative Care in the U.S. Population

8. Biopsychosocial Assessment of Individual Patients and Families Many older adults have gained skills from life’s challenges and demonstrate resilience and ability to reconcile to physical decline. Others are overwhelmed by the stress of life threat and ambivalent about the goals of palliative care: e.g., curative or restorative treatment.

9. Biopsychosocial Assessment: Past and Current Medical Situations Older adults may have experienced years of coping with multiple illnesses and require time and assistance in comprehending their often complex medical situation. Concurrent physical and psychological symptoms frequently occur in patients with multiple chronic conditions.

10. Biopsychosocial Assessment: Symptom Assessment Consider the nature and quality of pain, fatigue, etc. on patient’s quality of life. Consider using standard measures of symptoms and distress such as EPAS and MSAS to monitor symptoms, their intensity, and their impact on functioning over time.

11. Biopsychosocial Assessment: Impact of Life Stage Many older adults are resilient, having practiced strategies for coping with physical challenges and personal losses. However, they may have fewer resources, and strained or absent support networks. Developing a history of past illness, disability, and death as well as coping strengths informs the patient, family, and team

12. Biopsychosocial Assessment: Family’s Previous Coping with Illness Misconceptions from experiences Resources accessed are helpful/unhelpful Presence of past/current mental health problems History of alcohol/drug use Cohesion or conflict in family and support network Previous use of supports Strategies used for coping, accessing help, information

13. Biopsychosocial Assessment: Spirituality/Faith Because for many people their spiritual beliefs contribute to both the individual and the families’ coping with advanced illness, this is an important area to assess and incorporate into treatment planning. A commonly used assessment tool for spirituality is the FICA (Pulchalski, 2002). F—Faith or beliefs: What is your faith? I—Importance: Is it important in your life? C—Community: Are you a part of a spiritual community? A—Address: How to be addressed in your health care?

14. Biopsychosocial Assessment: Socioeconomic Factors/Resources Common problems in older adults include: financial strain low literacy level lack of transportation inadequate caregiver inappropriate environment for safety in the home. These needs often most critical to family.

15. Biopsychosocial Assessment: Cultural Values and Beliefs Clarify how cultural beliefs contribute to the individual’s and family’s understanding and coping. Understanding patient and family culture helps social workers develop effective communication, reduce conflicts, and determine how family members are best included in care planning and sharing bad news.

16. Social Work Interventions in Palliative Care Overview The evidence base Conceptual frameworks for social work intervention Specific interventions

17. Evolving Nature and Current State of the Evidence Base for Palliative Care Described in three reviews of reviews and one multi-site study: 2004: AHRQ systematic reviews/studies 2007: Review of EOL care outcome measures 2008: Review of randomized controlled trials of PC 2008: Multi-site study of cost saving of PC

18. The Evidence Base: 2004 AHRQ Review of Reviews and Studies Part A. Reviewed outcomes related to client and/or family satisfaction Findings:  PC improves patient and caregiver satisfaction.  More consistent results when measures were developed for PC. Inconsistent results when using measures developed for different populations.

19. Part B. Reviewed factors associated with better or worse outcomes Findings: Improved satisfaction and better quality of care with  Pain management  Communication interventions  Practical supports  Enhanced care giving The Evidence Base: 2004 AHRQ Review of Reviews and Studies

20. The Evidence Base: 2007 Review of Outcome Measures in End-of-life Care Findings: No measures for continuity of care, advanced care planning, spirituality, and caregiver well being. No consistent use of specific measures across studies, hence cannot do meta analyses.

21. The Evidence Base: 2008 JAMA Review of Randomized Controlled Trials of PC Outcomes: satisfaction with care, quality of life, and costs Findings:  PC improved family satisfaction with care in 7 of 10 studies.  Only 5 of 27 studies reported significant benefit in quality of life or symptom amelioration.  Only 1 of 7 studies showed significant cost saving.

22. The Evidence Base: 2008 Multisite RCT, 8 Hospitals to Study PC Cost Saving Findings: Significant cost reduction by decreased need for intensive care and by reduction in laboratory costs.

23. Two Social Work Conceptual Frameworks for Intervention Identifying tasks of terminal illness and interventions that can help patients and families fulfill those tasks. Identifying psychosocial health needs of patients and families and evidence- informed psychosocial health services to address them.

24. Conceptual Frameworks: Tasks for Patients with Advanced Illness 1.Maintaining acceptable quality of life during advanced illness 2.Coping with deteriorating physical condition 3.Confronting existential, spiritual, and religious Issues 4.Planning for remaining family and friends

25. Conceptual Frameworks: Tasks for Families of Individuals with Advanced Illness 1.Remaining involved with the family member sometimes over many months and years of illness. 2.Arranging for effective medical and custodial care. 3.Adapting to role changes as the patient’s condition alters. 4.Bearing the effects of grief over the patient’s losses. 5.Coming to terms with the reality of the impending loss. 6.Saying goodbye.

26. Conceptual Frameworks: Psychosocial Health Needs and Services A model that identifies psychosocial health needs of older patients with advanced disease and the evidence- informed psychosocial health services that address these needs.

27. Biopsychosocial Health Needs Social Work Addresses 1.Information about illness, treatments, health, and services. 2.Help in coping with emotions accompanying illness and treatment. 3.Help in managing illness. 4.Assistance learning behaviors to minimize impact of disease. 5.Material and logistical resources. 6.Help in managing disruptions in work, activities, family life, and social network. 7.Financial advice and/or assistance.

28. Examples of Evidence-informed Services Social Work Uses to Address Psychosocial Needs 1.Continuous provision of information (e.g., on illness, treatments, goals of care, psychosocial services) and helping pt/fm understand and use information. 2.Normalize the many emotions experienced during advanced illness: Provide opportunities for clarification and discussion of life review and the meaning of one’s life and legacy. Identify and expand formal and/or informal support network. Counseling/psychotherapy to individuals or groups. Pharmacological management of psychological symptoms. 3.Anticipate and educate about symptoms, transitions in care, advanced planning, and decision-making: Crisis intervention around unexpected disease changes, treatment reactions, or emotional responses. Case management to organize coordinated and continuous care.

29. Specific Interventions: Psychoeducation Teaching patient/family about illness, treatment and how they can cope with the illness, the health care system, and prepare for terminal illness. Evidence base suggests a broad range of teaching assists that should be tailored to individual patients and capacities.

30. Specific Interventions: Decision- making during Advanced Disease Discussion and implementation of changing care goals generally occurs during transition points in the illness. Four critical transitions:  From curative to palliative treatment  Establishing DNR/DNI status  Establishing preference of where death should occur, change of setting  Determining what resources can be accessed

31. Specific Interventions: Crisis Intervention Crises are typically situational, often related to patient and/or family caregiver exhaustion. Goal is to regain equilibrium, maintain hope. Guidelines include accepting social worker’s limitations to work out appropriate referral, promising only what you can personally insure will take place, allowing expression of intense feelings, avoiding unrealistic reassurances and clichés (I know how you feel; you must have positive attitude).

32. Specific Interventions: Cognitive-behavioral Basic postulate: Mental and physical symptoms are in part a function of underlying thoughts, feelings, and/or behaviors that are maladaptive. Goal is to restructure individual’s thoughts and feelings to more adaptive modes. Examples:  Live review, especially with older adults  Progressive muscle relaxation, cognitive restructuring, systematic desensitization, hypnosis, guided imagery, and problem solving therapy

33. Specific Interventions: Family conferencing A team intervention strategy with a client, family, and support network. Social worker team members are major conveners of this intervention. Goals include: 1.Efficient dissemination of information 2.Minister to needs of patient and family 3.Facilitate consensus building when decisions need to be made 4.Decrease possibility of miscommunication 5.Reduce lengths of stay in ICU

34. Specific Interventions: Practical Dimensions of Care for Patients and Families Practical interventions are central to social work role. Although important, impact of practical interventions have been insufficiently studied. One study found that absence of information, finances, transportation, and adequate living arrangements have a negative impact on treatment adherence. Practical help is found (in reviews of interventions) to be associated with greater patient satisfaction and quality of care.

35. Conclusions Palliative Care is in fact a care coordination intervention model that emphasizes psychosocial services as its defining characteristic. In addition to advanced interdisciplinary care it involves meticulous pain and symptom management; careful attention to the social psychological, and spiritual needs of patients and families; and an essential focus on improving care transitions, largely through improved methods of communication and coordination of service delivery.

36. Conclusions As the field is a newly emerging one, so is the evidence base. The challenge to social work is not only to demonstrate expertise in biopsychosocial assessment and intervention in advanced illness with older adults, but also to take a leadership role in the development and research of these new integrated models of care as well as specific psychosocial interventions for patients and families.