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.     

Comfort with discussions about death,religiosity, and attitudes about end‐of‐life care

In end‐of‐life (EOL) care research, death anxiety and religiosity are often overlooked. Terror management theory (TMT) may provide a useful conceptual model with which to examine how comfort discussing death and religiosity influence attitudes related to EOL care. A telephone‐based survey was conducted among community‐dwelling adults in the Unites States. Via random sampling, with over‐sampling of Hispanics/African Americans, 123 completed survey interviews (response rate = 46%) were analyzed. Respondents were more likely to have better attitudes toward EOL care if they were older or white, religiously active, and comfortable with the subject of death. Religiosity and comfort discussing death were correlated with each other and remained significant predictors of attitudes about EOL care even without demographic covariates. Findings suggest that promoting an open dialogue about mortality may improve attitudes about EOL care and utilization of palliative care services. The study also provides evidence about the utility and applicability of TMT for EOL care.     

“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.     

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.     

Developing a global approach to the theory and practice of young people leaving state care

This paper argues that globalization, although needing to be recognized as a highly complex phenomenon and a contested concept, should become part of the debate about improving the life chances of young people leaving care. Understanding globalization is essential to developing the effective strategies of engagement and resistance needed to address the social exclusion of these young people. Consideration is given to the considerable difficulties faced in moving from that general recognition to a sufficiently nuanced view of the impact of globalization on care leaving required as the basis for action. Existing approaches to promoting international exchange and understanding are discussed and a conceptual model presented as the means to start the work of identifying how the needs of care leavers are assessed and met in different national contexts. It is suggested that by identifying patterns of cross‐national similarities and differences, it will become possible to understand and to engage with the processes and institutions of globalization. An international theoretical and practice agenda are proposed appropriate to the present early stage in ensuring that globalization works for and not against the interests of care leavers.     

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.     

Home-Based Palliative Care Study

Abstract

Purpose: To examine differences in site of death and costs of services by primary diagnosis for patients receiving home-based palliative care as compared to usual care at the end of life verity of illness, service use, and site of death.

Design and Methods: A nonequivalent group design was employed with 298 terminally ill patients diagnosed with cancer, CHF, or COPD enrolled. The treatment group received an interdisciplinary home-based palliative care program and the comparison group received usual Kaiser Permanente services. Data collected included patient demographics, se-

Results: Among all diseases, patients enrolled in palliative care were more likely to die at home. Enrollment in palliative care was significant associated with cost reductions for patients with cancer, COPD, and CHF. No significant difference was found between diagnostic groups in terms of magnitude of cost savings.

Implications: Provision of interdisciplinary home-based palliative care at end of life can effectively increase the likelihood of dying at home for patients with CHF, COPD, and cancer while realizing significant COSt savings.     

Palliative care patients' experiences of healthcare treatment

Kennett C, Payne M. Palliative care patients' experiences of healthcare treatment Int J Soc Welfare 2010: 19: 262–271 © 2009 The Author(s), Journal compilation © 2009 Blackwell Publishing Ltd and the International Journal of Social Welfare. This article reports on a thematic analysis of the opinions of 34 palliative care patients about medical and healthcare treatment expressed in comments, narratives and discussions during a series of facilitated group discussions undertaken as part of training events for medical students. Palliative care patients often have long healthcare careers, which enables them to compare different professionals and services, thus offering a more powerful and complex analysis of patient experience than that obtainable from analysis of complaints or satisfaction surveys, and permits some understanding to be obtained of the attitudes that condition evaluations of services. The patients balanced negative views with positive experiences. They appreciated open, listening, equal and friendly relationships with professionals in which careful explanation fostered their confidence in the overall service. They criticised inflexible services that did not consider their broad needs, and in which relationships with professionals were characterised by busy‐ness and professional distance.     

Between‐ and within‐person predictors of children’s information management following rule violations

The purpose of this study was to better understand both why some children disclose more about their misbehavior to their parents than do other children, as well as why a child discloses to parents about misbehavior in some situations but not in others. Analyses test parental warmth, children's beliefs regarding the legitimacy of parental authority and their own obligation to disclose misbehavior, and parent's responses to children's disclosure of disagreement with parents’ rules and children's misbehavior as predictors of both between‐person and within‐person variations in disclosing and revealing forms of information management. Parent‐child dyads (n = 218) were interviewed during the summers following the child's 5th (M age = 11.9 years) and 6th grade school years. Feeling obligated to disclose rule violations and believing that parents have legitimate authority to impose rules across more topics explained why some children reveal more and conceal less from parents than do other children. Children were more likely to conceal information about the specific topics for which they felt less obligated to disclose rule violations and following rule violations in areas in which their parents previously punished rule violations.     

A Conceptual Model of Family Surrogate End-of-Life Decision-Making Process in the Nursing Home Setting: Goals of Care as Guiding Stars

An increasing proportion of dying is occurring in America's nursing homes (NH). Family members are involved in (and affected by) medical decision-making on behalf of NH residents approaching the end of life, especially when the resident is cognitively impaired. This article proposes an empirically derived conceptual model of the key factors NH family surrogate decision-makers consider when establishing or changing goals of care and the iterative process as applied to the NH setting. This model also establishes the importance of family social role expectations toward their loved one as well as the concept, “stance toward dying,” as key in establishing or changing the main goal of care. NH staff and physicians can use the model as a framework for providing information and support to family members. Research is needed to better understand how to prepare staff and settings to support family surrogate decision-makers, in particular around setting goals of care. The model can be generalized beyond nursing homes.     

Measuring State Welfare Policy Changes: Why Don't They Explain Caseload and Employment Outcomes?*

Objectives. Since the implementation of the 1996 Personal Responsibility and Work Opportunity Reconciliation Act, many analysts have attempted to measure the effects of new state welfare policies, particularly work requirements, sanctions, and time limits, on the Act's key goals—reducing cash assistance caseloads and increasing employment among single mothers. De Jong et al. present new measures of state policy variations, but they do not attempt to evaluate the relationships between these measures and welfare reform outcomes. For their analysis to be meaningful, it should contribute to a better understanding of cross‐state variations in caseload declines and increased employment among single mothers. Methods. We first raise conceptual questions about the extent to which their measures are meaningful in a policy sense. We then present analyses of Current Population Survey data. Results. We find that differences in the De Jong et al. stringency measures (factor scores) are not significantly correlated with differences in welfare reform outcomes by state.     

Grief,loss, and separation: Experiences of birth children of foster carers

Previous research identifies the increased exposure of birth children of foster carers to experiences of separation, grief, and loss due to the transient nature of foster care, but little is known about how birth children manage this loss. This paper reports findings from a qualitative study that examined the retrospective experiences of 15 adult birth children of foster carers (aged between 18 and 28 years) in Ireland. Findings suggest that birth children experience grief and loss when foster children leave their families. They report experiencing a range of emotional responses such as guilt, blame, and sadness. A reluctance to discuss their emotional responses with either their parents or foster care professionals was also reported. Instead, birth children developed strategies to manage the loss, such as distancing themselves from the foster care process. The study highlights the importance of social workers and foster carers explaining to birth children why foster children are leaving and, where possible, maintaining contact between birth children and foster children. Additionally, findings indicate the need for birth children to have safe nonjudgmental spaces to discuss their emotional reactions to loss.     

Educating Our Future Colleagues: Creating an MSW Palliative Care Practicum

As the number of older adults and those with chronic medical conditions continues to rise, the need to train social work students in palliative and end-of-life competencies becomes critical. To address this growing need, the social work team at a large urban academic medical center in the Midwest developed an MSW concentration practicum in palliative and end-of-life care. During the practicum, students receive immersive training in palliative care social work values and the skills required for these specialized assessments, interventions, and evaluations. Their training culminates in their participation on an interdisciplinary team to provide psychosocial support to patients and families receiving palliative and end-of-life care throughout the medical center. This article describes the curriculum, practice immersion, training manual, teaching modules, and structure of student supervision which is applicable to and adaptable for other palliative care social work field instructors.     

Unmet Needs at the End of Life

Abstract

Among persons at the end of life, it is important to understand whether the needs of patients are being adequately addressed. In particular, in hospice settings where the emphasis is on comfort care and quality of life, we know little about the presence of unmet needs. The purpose of this study was to examine the experiences of hospice social workers in working with hospice patients who had unmet needs at the end of life. Surveys were mailed to hospice social workers (N = 212) in two Southeastern states with a response rate of 36%. Results revealed that hospice social workers perceived patients to experience a wide variety of unmet needs-more commonly at the time of admission than during subsequent patient interactions. The most common unmet need reported at both times was a decreased ability to participate in activities that make life enjoyable. In situations where unmet needs exist, social workers reported that the most common perceived reasons were patient-related psychosocial issues and family conflict/issues. Additionally, a variety of interventions were used to address unmet needs, but a large number of barriers appear to impact outcomes in the cases. Results suggest that hospice patients experience a number of unmet needs, many of which are potentially treatable problems and concerns. Hospice professionals must continue to seek ways to assess and intervene effectively with patients who have unmet needs.     

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.     

Moving Toward Medicare Home Health Coverage for Persons with Alzheimer's Disease

ABSTRACT

Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit. The article asserts existing research establishes a prima facie case exists for the federal government to fund a Medicare Palliative Home Care for Alzheimer's disease demonstration project. The article cites the success of the Medicare Hospice Demonstration project and Hospice Medicare Benefit in reducing costs and improving client quality of life as precedent and a model for Alzheimer's disease. Other research implications are identified.     

“Res Ipsa Loquitur” … It Speaks for Itself … Social Work—Values,Pain, and Palliative Care

Abstract

Despite the mandated and moral imperative to advance linguistic competence in all health care contexts, leadership that addresses this area of practice and study in end-of-life and palliative care is not readily obvious. Because social work is ideally suited to lead efforts to advance linguistically-accessible end-of-life and palliative care, social workers are encouraged to assume the challenge. This article focuses on topics that are elementary yet central to discussions on language diversity and leadership initiatives to advance language access in end-of-life and palliative care contexts: importance and function of language, extent of language diversity, inequity related to language diversity, mandates and standards related to language access, and approaches and competencies that contribute positively to language access.     

Developing Practice Tools for Social Workers in End-of-Life Care

Abstract

This article describes the National Association of Social Workers' (NASW) strategies for providing social workers with important practice and policy information about palliative and end-of-life care. With funding from a Soros Foundation's Project on Death in America grant, NASW developed practice standards, a Web-based continuing education course, and drafted a new policy statement to guide social workers in end-of-life care practice. The article provides an in-depth view of the development and scope of these resources for professional social workers.