Advancing Hospice and Palliative Care Social Work Leadership in Interprofessional Education and Practice

The importance of interprofessional collaboration in achieving high quality outcomes, improving patient quality of life, and decreasing costs has been growing significantly in health care. Palliative care has been viewed as an exemplary model of interprofessional care delivery, yet best practices in both interprofessional education (IPE) and interprofessional practice (IPP) in the field are still developing. So, too, is the leadership of hospice and palliative care social workers within IPE and IPP. Generating evidence regarding best practices that can prepare social work professionals for collaborative practice is essential. Lessons learned from practice experiences of social workers working in hospice and palliative care can inform educational efforts of all professionals. The emergence of interprofessional education and competencies is a development that is relevant to social work practice in this field. Opportunities for hospice and palliative social workers to demonstrate leadership in IPE and IPP are presented in this article.     

Inside the interdisciplinary team experiences of hospice social workers

Interdisciplinary teamwork is the foundation for the delivery of hospice care. This project interviewed 23 hospice social workers by telephone to explore their experiences with hospice team collaboration. Two research questions were explored: (1) What do social workers perceive as the strengths of interdisciplinary collaboration and (2) What are the challenges for social workers on interdisciplinary hospice teams? Participants identified issues related to team process, administrative processes, and barriers to effective team collaboration. Collaboration was said to be fostered by good communication, trust, roles, joint visitation, respect, team building activities, and administrative interest and support. Challenges to collaboration included large caseloads, a focus on the medical model, limited visits, personality and team conflict. Opportunities for improved collaboration between social workers and hospice team members exist through active evaluation of collaboration and strategic initiatives aimed at improving collaboration.     

Enhancing Palliative Care for Low-Income Elders with Chronic Disease: Feasibility of a Hospice Consultation Model

Challenges exist in assimilating palliative care within community-based services for nursing home eligible low-income elders with complex chronic illness as they approach the end of life (EOL). This study assessed the feasibility of a consultation model, with hospice clinicians working with three Care Wisconsin Partnership Program teams. Consults occurred primarily during team meetings and also informally and on joint patient visits and were primarily with the palliative care nurse addressing physical issues. Fifty-seven percent of consultant recommendations were implemented. Benefits of consultation were identified with focus groups of clinical staff as were opportunities and barriers to the implementation. Models of integration are proposed.     

The development of palliative care programs in the Veterans Administration: Zelda Foster's legacy

The U.S. Department of Veterans Affairs (VA) has been a leader in program development and service delivery in the areas of geriatrics, hospice and palliative care for decades. Zelda Foster, MSW, serving as the Chief of Social Work Services at the Brooklyn VA Hospital for almost 20 years, was a force in the early days of the palliative care and hospice movement in the United States, publishing a seminal article in 1965, and contributing through educational initiatives, program development, information dissemination and mentorship of countless social workers. With an early recognition of the demographic imperative of aging veterans, the VA established a number of innovative programs which have been widely replicated outside of the VA. Zelda Foster was a central figure in the evolution of these programs and a strong and effective advocate for the inclusion of social workers. She deserves much credit for the fact that social workers are now centrally involved in an array of leadership activities in palliative and end-of-life care both within and outside of VA.     

“Unexpected and Distressing”: Understanding and Improving the Experience of Transferring Palliative Care Inpatients to Residential Care

The survival of patients with advanced cancer, coupled with the increased presence of end-stage chronic illnesses in an aging population, is leading to a demand in palliative care. Due to the ongoing need for acute-pain and symptom control in hospice/palliative care units, few are able to offer long-stay admission for those whose symptoms have stabilized. When a patient no longer requires specialist palliative care services, transfer from an inpatient palliative care facility may then be necessary. A core component of the role of palliative-care social workers involves working with patients and their families/carers when the care pathway shifts and the option of residential aged care facility (RACF) needs to be considered. This research explored several issues, including the impact of this transition on the patient and their families and on the interdisciplinary health care team treating the patient. An investigation was undertaken to identify concerns and barriers regarding the transition from hospice care to RACF and opportunities were highlighted to improve clinical practice in this area. A tripartite approach was adopted conducting face-to-face interviews with patients, their families/carers, and health care professionals. Members of the interdisciplinary team were interviewed and social workers working in similar inpatient palliative-care facilities undertook telephone interviews to gauge their experiences. A thematic analysis discerned a number of themes highlighting the impact of this transition on key stakeholders and incorporated recommendations to improve or best manage this process. The research has highlighted the difficulties that patients/families encounter in this transition, as well as the emphases of protecting the integrity of the patient and family. This is achieved by holding open and ongoing dialogue, particularly through family meetings and working in collaboration with the patient, the family, and the team. Understanding the experience and impact of this transition on key stakeholders is helpful in building up a knowledge base and to ensure a more effective relationship occurs. This research incorporated the voices of terminally ill patients, families, and members of the health care team in order to understand their views and recommendations for best managing the transition from a hospice/inpatient palliative-care facility to a RACF. This enables their input to have some real impetus in clinical practice and service delivery.     

Results of a nationwide hospice and palliative care social work job analysis

The role of the hospice and palliative social worker is often ambiguous and misunderstood by colleagues and fellow team members. One reason for this is the lack of identified, clearly delineated roles, skills, and tasks employed by these specialty social workers in their daily work. This article summarizes the first nationwide job analysis of hospice and palliative social workers. A contextual, cross-sectional survey design was used to identify current and relevant job tasks from practicing hospice and palliative social workers. A sample of 482 social workers representing 46 states responded to a survey that included demographic questions and ranking of 152 tasks and importance to the position. Tasks were categorized into four broad categories: assessment and reevaluation; planning and intervention; death, grief, and bereavement; and professionalism; which includes subcategories consisting of multiple tasks and skills. Respondents identified performing a psychosocial assessment from a patient/family centered care perspective, assessment of the patient’s current and desired quality of life and of coping skills as the tasks most important to their role. This outline of the role of the hospice and palliative social worker was then used in the development of an evidence-based certification exam that may be required of those who want to receive specialty certification in the field.     

Inside the Interdisciplinary Team Experiences of Hospice Social Workers

Abstract

Interdisciplinary teamwork is the foundation for the delivery of hospice care. This project interviewed 23 hospice social workers by telephone to explore their experiences with hospice team collaboration. Two research questions were explored: (1) What do social workers perceive as the strengths of interdisciplinary collaboration and (2) What are the challenges for social workers on interdisciplinary hospice teams? Participants identified issues related to team process, administrative processes, and barriers to effective team collaboration. Collaboration was said to be fostered by good communication, trust, roles, joint visitation, respect, team building activities, and administrative interest and support. Challenges to collaboration included large caseloads, a focus on the medical model, limited visits, personality and team conflict. Opportunities for improved collaboration between social workers and hospice team members exist through active evaluation of collaboration and strategic initiatives aimed at improving collaboration.     

Hospice care for the child with AIDS

Hospice care was established to provide palliative (i.e., noncurative) services for the dying and their families. The advent of the AIDS epidemic has posed a challenge to hospice care, particularly for the child dying of the disease, and has adapted to modified palliative services. Parents, with a child dying of AIDS, must deal with many issues of disclosing the disease status to the child, coping with the emotions of losing a child, and when and where to incorporate hospice services into the dying process. Optimizing home based hospice care involves; (1) Nutritional management, (2) Prevention of opportunistic infections, (3) Pain management, and (4) Protection of Non-HIV positive members of hospice care. For the dying, hospice strives to achieve a peaceful death and provide supportive intervention for the survivors.     

Welfare Rights Advocacy in a Specialist Health and Social Care Setting: A Service Audit

Is a specialized welfare rights service, thought important insocial services departments, a valid element of social careservices in multi-professional settings in which social workis increasingly incorporated, where social workers often helpservice users with benefits? An audit of a specialized welfarerights advocacy service, part of social work provision in alarge UK hospice, demonstrated inconsistent referral by nursingstaff, the main referrers, a large workload including frequentcomplex cases and achievement of benefits and grants for patients,carers and families substantially in excess of the cost of theservice. Annual workload for a forty-eight-bed hospice with1,600 home care patients was estimated at 976 typical caseswith nearly 2,928 contacts; about sixty complex cases annuallygenerated a similar workload in themselves. Provision of specializedwelfare benefits advocacy for palliative care patients is foundlikely to meet a substantial need and to require specialistprovision. This may be true of other multi-professional servicesincorporating social workers.     

Physician-Assisted Suicide and Midwest Social Workers: Where Do They Stand?

ABSTRACT

Physician-assisted suicide (PAS) is explicitly legal in five states and by court decision in one. Legislative bills have been introduced in other states including Minnesota, Iowa, and Wisconsin. This quantitative study was designed to understand Midwest, hospice and palliative care at end-of-life social workers’ attitudes toward PAS, preferred terminology, perception of preparedness for the implementation, and awareness of PAS legislation in their state. Sixty-two social workers from Minnesota, Iowa, and Wisconsin completed an anonymous online survey. The results indicated that over one-half of the participants supported PAS legislation and is consistent with previous research on social workers across the country. While there was a range of perceived preparedness for implementation, a majority felt moderately to very prepared. Professional and personal values as well as professional experience influenced their perceived preparedness. Few social workers had accurate awareness of PAS legislation in their state or had attended workshops/events for further education or as a policy advocate. To practice competently and advocate at all levels of practice, hospice and palliative care at end-of-life social workers’ need to understand their own attitudes and values toward PAS and pursue additional education around this ethical issue.     

The Social Work Assessment Tool (SWAT)

This paper reports on the last of three National Hospice and Palliative Care Organization initiatives to move hospice and palliative care social workers into the patient/family outcomes arena: the development of the Social Work Assessment Tool. The experience of a team of practitioners and researchers is described, including results of two pilot studies and subsequent SWAT revisions. The major focus is on the current model performance improvement project, in which 19 social workers from 14 hospice and palliative care programs used the SWAT with 101 patients and 81 primary caregivers for a median of 44 days. Quantitative analysis indicated significant improvement in SWAT scores for patients from the first to the second social work visit (t = -2.60, df = 47, p .01). Qualitative interviewing of the social workers indicated some lack of readiness in the field to conduct quantitative outcomes measurement. Additional measures are needed in addition to the SWAT, including qualitative measures, and measures of mezzo and macro practice. Participants indicated that the SWAT was appropriate for use with economically and culturally diverse clients.     

Developing a Palliative Radiation Oncology Service Line: The Integration of Advance Care Planning in Subspecialty Oncologic Care

Within radiation oncology, there is often minimal attention on radiotherapy with palliative benefits due to the overlying focus on curative treatments. Historically at the University of Pennsylvania, advanced-stage patients are cared for by cancer site-specific teams rather than a more rapid treatment service model that focuses on patients’ symptom needs and larger clinical issues within a palliative framework. Thus, the University of Pennsylvania created a designated palliative radiation oncology team to focus on the complex medical and relational issues of metastatic cancer patients. Social workers play a critical role in patient and family conversations about advance directives, care needs, and end-of-life goals and fears as treatment regimens and outcomes continue to unfold. The palliative radiation oncology social worker developed and instituted a new, formalized assessment tool called the “palliative radiation oncology psychosocial care plan” in the electronic medical record. A retrospective analysis of 26 palliative radiation oncology patients under treatment between February and August 2016 was conducted. Of these patients treated with palliative radiation, 19% completed an advance directive after the social work intervention. This model highlights advance care planning as a best practice and encourages end-of-life discussions as a routine part of the oncology workflow.     

Hospice and Latinos: a review of the literature

Research on hospice use by Latinos, although increasing since the late 1990s, remains sparse. This article presents a review of the recent available literature on this topic within the past 15 years. The main aspects discussed are access to hospice care and various factors that researchers suggest affect Latino utilization of hospice care. These factors include beliefs about health care, death and end-of-life care, lack of insurance, lower referral rates by health care professionals and the hospice caregiver requirement. Overall, Latinos underutilize hospice but the reasons remain unclear. No evidence exists to indicate that Latinos are dissatisfied with services once they receive them. Also, no evidence exists to indicate they want services but cannot obtain them. Implications for social work practice and research are discussed.     

The Social Work Assessment Tool (SWAT)

Abstract

This paper reports on the last of three National Hospice and Palliative Care Organization initiatives to move hospice and palliative care social workers into the patient/family outcomes arena: the development of the Social Work Assessment Tool. The experience of a team of practitioners and researchers is described, including results of two pilot studies and subsequent SWAT revisions. The major focus is on the current model performance improvement project, in which 19 social workers from 14 hospice and palliative care programs used the SWAT with 101 patients and 81 primary caregivers for a median of 44 days. Quantitative analysis indicated significant improvement in SWAT scores for patients from the first to the second social work visit (t = ?2.60, df = 47, p .01). Qualitative interviewing of the social workers indicated some lack of readiness in the field to conduct quantitative outcomes measurement. Additional measures are needed in addition to the SWAT, including qualitative measures, and measures of mezzo and macro practice. Participants indicated that the SWAT was appropriate for use with economically and culturally diverse clients.     

Hispanic Hospice Patients’ Experiences of End-Stage Restlessness

ABSTRACT

End-stage restlessness, or terminal agitation, is experienced by some patients during their final days and is characterized by physical, emotional, or spiritual distress, agitation or anxiety. End-stage restlessness negatively affects the patient’s death experience and can be distressing to the family and care team. Using the 2007 National Home and Hospice Care survey, this study examined factors associated with experiencing end-stage restlessness among non-Hispanic white and Hispanic hospice patients deceased at time of discharge. Results showed that being Hispanic/Latino, experiencing dyspnea, pain, and receiving palliative sedation treatment were risk factors for experiencing end-stage restlessness. The association between pain and restlessness was stronger for Hispanics compared with non-Hispanic whites. The Hispanic population remains underrepresented and little is known about the patient-centered experiences of Hispanic hospice users. Findings indicated that dying Hispanic patients continue to experience pain and other negative symptoms, even when hospice care is in place. Thus, it is important that social workers provide education to interdisciplinary team members about culturally competent practices, and advocate for a patient-centered approach to care.     

Hospice and Latinos

Abstract

Research on hospice use by Latinos, although increasing since the late 1990s, remains sparse. This article presents a review of the recent available literature on this topic within the past 15 years. The main aspects discussed are access to hospice care and various factors that researchers suggest affect Latino utilization of hospice care. These factors include beliefs about health care, death and end-of-life care, lack of insurance, lower referral rates by health care professionals and the hospice caregiver requirement. Overall, Latinos underutilize hospice but the reasons remain unclear. No evidence exists to indicate that Latinos are dissatisfied with services once they receive them. Also, no evidence exists to indicate they want services but cannot obtain them. Implications for social work practice and research are discussed.     

The FACES Project: an academic-community partnership to improve end-of-life care for families

This article reports on a research partnership between a community-based hospice and a graduate school of social work. The purpose of the collaboration was to design and test a tool for assessing caregiver strain and resources in families caring for older adults receiving hospice home care services. Eighteen hospice home care social workers interviewed 162 caregivers for the study and provided their own assessment of the tool's clinical utility. Both strengths and challenges of the collaboration are evaluated and implications are discussed for social work practice and research, particularly academic-community research partnerships.     

Facilitating forgiveness and peaceful closure: the therapeutic value of psychosocial intervention in end-of-life care

The importance of addressing psychosocial concerns with dying patients is pivotal to facilitating peaceful closure in end of- life care. The social worker's role in recognizing and providing skilled, psychosocial intervention with patients and families in hospice programs is significant. In this article, the literature in this area is examined and a case example of a hospice patient's need for closure and the responsive social work intervention for the patient in his moment of death is provided. The case offers social work knowledge and skills and demonstrates the therapeutic benefit of addressing psychosocial needs in end-of-life care. The importance of targeted training and continued skill development for social workers in end-of-life treatment settings is emphasized.