Betty J. Kramer

Social Work Competencies in Palliative and End-of-Life Care

Abstract Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a summary document of the state-of-the-art practice of social work in palliative and end-of-life care. Nine Summit participants reviewed the literature and constructed this detailed description of the knowledge, skills, and values that are requisite for the unique, essential, and appropriate role of social work. This comprehensive statement delineates individual, family, group, team, community, and organizational interventions that extend across settings, cultures, and populations and encompasses advocacy, education, training, clinical practice, community organization, administration, supervision, policy, and research. This document is intended to guide preparation and credentialing of professional social workers, to assist interdisciplinary colleagues in their collaboration with social workers, and to provide the background for the testing of quality indicators and “best practice” social work interventions.

Predictors of Family Conflict at the End of Life: The Experience of Spouses and Adult Children of Persons with Lung Cancer

PURPOSE Guided by an explanatory matrix of family conflict at the end of life, the purpose of this article was to examine the correlates and predictors of family conflict reported by 155 spouses and adult children of persons with lung cancer. DESIGN AND METHODS A cross-sectional statewide survey of family members of persons who died from lung cancer was conducted as part of the larger study on the Assessment of Cancer CarE and SatiSfaction in Wisconsin. RESULTS Significant bivariate correlations were found between family conflict and family context variables (i.e., a history of conflict, younger respondent age, race, and specified end-of-life care wishes of the patient), conditions (i.e., greater physical and psychological clinical care needs of the patient), and contributing factors (i.e., communication constraints and family asserting control). In the multivariate model, significant predictors of family conflict included prior family conflict, race, communication constraints, and family members asserting control; the model explained 72% of the variance in conflict. IMPLICATIONS Implications for routine assessment and screening to identify families at risk and recommendations for the development and testing of interventions to facilitate shared decision making and enhance open communication among at-risk families are highlighted.

Analysis of End-Of-Life Content in Social Work Textbooks

This article reports on a project designed to improve end-of-life (EOL) care in social work education. The project’s goals were to develop and use EOL-related content guidelines to conduct a critical review of textbooks frequently used in social work. A descriptive study design was employed using content analysis and quantification of the content in 50 texts, selected from a list of over 700 books. Ten content areas considered essential for competent social work practice in situations involving EOL care comprised only 3% of the total text. Results demonstrate a significant opportunity for improvement of EOL content in social work textbooks.

COMPLICATED GRIEF SYMPTOMS IN CAREGIVERS OF PERSONS WITH LUNG CANCER: THE ROLE OF FAMILY CONFLICT, INTRAPSYCHIC STRAINS, AND HOSPICE UTILIZATION *

Guided by a stress process conceptual model, this study examines social and psychological determinants of complicated grief symptoms focusing on family conflict, intrapsychic strains, and the potential moderating effect of care quality and hospice utilization. Relying on data from 152 spouse and adult child lung cancer caregiver survey respondents, drawn from an ancillary study of the Assessment of Cancer CarE and SatiSfaction (ACCESS) in Wisconsin, hierarchical multiple regression analysis was used to examine determinants of complicated grief. After controlling for contextual factors and time since death, complicated grief symptoms were higher among caregivers with less education, among families with lower prior conflict but higher conflict at the end-of-life, who had family members who had difficulty accepting the illness, and who were caring for patients with greater fear of death. Additionally, hospice utilization moderated the effect of fear of death on complicated grief. Findings suggest that family conflict, intrapsychic strains, and hospice utilization may help to explain the variability found in complicated grief symptoms among bereaved caregivers. Implications for enhancing complicated grief assessment tools and preventative interventions across the continuum of cancer care are highlighted.

Challenges Facing Families at the End of Life in Three Settings.

This study examined the challenges faced by family members at the end of life in different care settings and how those challenges compare across settings. A total of 30 participants, who had a family member die in inpatient hospice, a skilled nursing facility, or a community support program were interviewed. Semi-structured interviews were recorded and transcribed. Text was coded using qualitative thematic analysis. Themes were determined by consensus. Twelve challenges were identified across care sites. Two themes emerged in all three settings: bearing witness and the experience of loss. The study findings contribute to our knowledge of family perceptions of care in different settings and raises awareness of the need for further research describing the experiences at the end of life in different settings and the importance of creating and testing interventions for both setting specific needs and universal issues.

Advancing Theory of Family Conflict at the End of Life: A Hospice Case Study

CONTEXT Although family conflict is a common occurrence for families involved in caregiving for a dying family member, it has not been examined in the hospice context. OBJECTIVES The purpose of this study was to advance theory of family conflict at the end of life through replication and expansion of a case study involving professional perspectives in the context of a managed care program for low-income elders with advanced chronic disease in their last six months of life, by exploring the perceptions of professionals and family caregivers experiencing conflict in the hospice context. METHODS Data were gathered through in-depth interviews with 15 hospice family caregivers experiencing substantial family conflict, and focus groups with 37 professionals employed in a large multicounty and nonprofit hospice in the Midwest U.S. Dimensional analysis, a method for the generation of grounded theory, was used to refine and expand an explanatory matrix of family conflict at the end of life. RESULTS The initial matrix was expanded through the inclusion of eight new and two refined categories, strengthening our understanding of family conflict as a complex phenomenon influenced by salient contextual variables, conditions, and factors that may contribute to a number of negative outcomes for patients, family members, and professionals. CONCLUSION The study findings are discussed in terms of implications for assessment and intervention.

Challenges in End-of-Life Care Management for Low-Income Frail Elders: A Case Study of the Wisconsin Family Care Program

The need for well-coordinated care at the end of life is an important priority for meeting the needs of the growing number of low-income frail elders who are advancing in age. Partially integrated (Medicaid only) models of managed long-term care (MMLTC) are viewed as one promising and financially viable approach to enhance care coordination, yet we know little about the challenges that care managers face in managing the end-of-life care needs of poor elders. A case study design was used to explore challenges encountered in the provision of end-of-life care management for low-income elders enrolled in an innovative partially integrated model of long-term care, in Wisconsin, the Milwaukee County Family Care program. Data were collected via in-depth interviews with county administrators (n = 4) and selected lead supervisors or care managers (n = 7) and two focus groups with care management team members (n = 17). We identified five major themes representing essential challenges: (1) complexity of care and high level of support needs; (2) communication constraints in advance care planning; (3) family conflicts in end-of-life decision making for elders; (4) insufficient communication and collaboration between elders, families, teams, and service providers; and (5) limited bereavement and grief related support for families and teams after elders die. We discuss similarities and difference in the challenges reported here as compared to challenges reported in studies of other models of care and offer recommendations for program and policy development.

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.