Barriers and Facilitators to Preparedness for Death: Experiences of Family Caregivers of Elders with Dementia.

Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study's purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data. Four primary themes were identified as barriers: (1) hindrances to information; (2) barriers to hospice; (3) ineffective attempts to comfort; and (4) the nature of death with dementia. Six themes were identified as facilitators: (1) religious/spiritual beliefs; (2) caregiver initiative; (3) prior experience; (4) bearing witness to decline; (5) professionals alerting caregiver (of what to expect of impending death); and (6) culture and legacy of family caregiving. The results support an increased role of social work in addressing caregivers' awareness of impending death and helping prepare them for the death of an elder with dementia.

Preparedness for Death: How Caregivers of Elders With Dementia Define and Perceive its Value.

Purpose: The purpose of this study is to ascertain how bereaved caregivers of a family member who died from a dementia-related diagnosis (a) define preparedness and (b) perceive its value. Design and Methods: Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Results: Only one third (n = 10) of caregivers interviewed were prepared for the death, and the majority who were prepared were enrolled in hospice. Five primary themes revealed ways that caregivers define various domains of preparedness: (i) accepting reality; (ii) knowing death is near; (iii) getting your "house in order"; (iv) saying "what you need to say"; and (v) giving "permission" to die. The majority (87%) believed that it is important for caregivers to be prepared, and the value of preparedness was exemplified in five domains reflecting the benefits of being prepared. Implications: The results support further attention to the development and testing of interventions to address the unmet needs of caregivers of family members with dementia to help prepare them for the death in a variety of contexts.

Correlates and Predictors of Conflict at the End of Life Among Families Enrolled in Hospice.

CONTEXT: Despite the palliative care mandate to view family as the unit of care, and the high prevalence and detrimental consequences of conflict at the end of life, little research has been conducted with hospice families to understand what contributes to family conflict. OBJECTIVES: Using a recently generated explanatory matrix of family conflict at the end of life, this study sought to identify the correlates and predictors of family conflict. METHODS: As part of a larger mixed methods cross-sectional study, a 100-item survey was administered to 161 hospice family caregivers enrolled in a Medicare/Medicaid certified non-profit hospice organization located in the Midwest U.S. RESULTS: Although overall levels of conflict were relatively low, 57% of hospice caregivers reported experiencing some family conflict at the end of life. Contextual variables associated with family conflict included a history of family conflict, female gender, younger caregiver age, presence of children in the home, and less advance care planning discussions. Significant main effects in the prediction of family conflict in the final hierarchical multiple regression model included prior family conflict, caregiver age, caregiver gender, advance care planning discussions, family "coming out of the woodwork," communication constraints, and family members asserting control. The model explained 59% of the variance in family conflict. CONCLUSION: Results support the multidimensional theoretical model of family conflict specifying the importance of the family context, key conditions that set the stage for conflict, and essential contributing factors. Implications for routine assessment and screening to identify families at risk and recommendations for future research are highlighted.

Factors contributing to economic burden in lung cancer spousal caregivers.

OBJECTIVE: The determinates of economic burden in lung cancer caregivers are poorly understood. Of particular interest is the role patient symptoms play in caregiver economic burden. Guided by a stress process conceptual framework, this study examined the predictors of economic burden reported by lung cancer spousal caregivers. Our study focused on the pathway of contextual and stressor variables leading to economic burden in lung cancer caregivers. METHOD: Relying on survey data from 138 spouses, structural equation modeling was employed to examine the determinants of economic burden measured using the Family Impact Survey. Contextual variables included age, gender, education, and income; and stressor variables included patient physical and mental symptoms, as well as number of children in the home. RESULTS: A significant indirect path between age and economic distress through patient symptoms (p = 0.05) indicates younger spouses providing care for patients with more symptoms and reporting greater economic burden. Direct effects between contextual variables and economic burden revealed that caregivers with less education (p = 0.02) and those with more children at home (p = 0.01) reported more adverse economic outcomes. SIGNIFICANCE OF RESULTS: Numerous factors impact spousal caregivers' economic burden, including the presence of children at home, being a younger caregiver, and lower educational attainment by caregivers. Moreover, the direct effects between age and economic burden were not significant, supporting the clear role patient symptoms play in the path to economic burden in spousal caregivers. These results underscore the need for healthcare providers to address psychosocial factors when dealing with patients and families with lung cancer. Specifically, the results highlight the importance of addressing patient symptoms early before they threaten the family's economic well-being.

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.

Facilitating advance care planning with ethnically diverse groups of frail, low-income elders in the USA: perspectives of care managers on challenges and recommendations.

This study examined care managers' perspectives on facilitating advance care planning (ACP) with ethnically diverse elders enrolled in a managed long-term care programme that coordinates medical and long-term care for frail, poor elders in the USA. Seven in-depth interviews and two focus groups were conducted with 24 lead supervisors and care managers of care management teams between July and August 2008; data were analysed with qualitative thematic analysis method. Participants identified four main sources of challenges: death and dying are taboo discussion topics; the dying process is beyond human control; family and others hold decision-making responsibility; and planning for death and dying is a foreign concept. Participants' recommendations to address these challenges were to develop trust with elders over time; cultivate cultural knowledge and sensitivity to respect value orientations; promote designating a healthcare proxy; recognise and educate families and community leaders as critical partners in ACP and provide practical support as needed throughout the illness experience. These findings suggest important practice implications for care managers working with increasingly diverse cultural groups of elders at the end of life.

Social workers' roles in addressing the complex end-of-life care needs of elders with advanced chronic disease.

This study examined social workers' roles in caring for low-income elders with advanced chronic disease in an innovative, community-based managed care program, from the perspective of elders, family, team members, and social workers. The results are drawn from a larger longitudinal, multimethod case study. Sources of data include survey reports of needs addressed by social workers for 120 deceased elders, five focus groups with interdisciplinary team members, and in-depth interviews with 14 elders and 10 of their family caregivers. A thematic conceptual matrix was developed to detail 32 distinctive social work roles that address divergent needs of elders, family, and team members. Distinctive perceptions of social workers' roles were identified for the different stakeholder groups (i.e., elders, family caregivers, team members, and social workers). Findings from this study may inform supervisors and educators regarding training needs of those preparing to enter the rapidly growing workforce of gerontological social workers who may be called upon to care for elders at the end of life. Training is particularly warranted to help social workers gain the skills needed to more successfully treat symptom management, depression, anxiety, agitation, grief, funeral planning, and spiritual needs that are common to the end of life.

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.

Perceived success in addressing end-of-life care needs of low-income elders and their families: what has family conflict got to do with it?

The purpose of this study was to examine the predictors of perceived success in addressing the end-of-life care needs of low-income older adults and their family members. Perceived success is defined as the clinician's subjective assessment of the extent to which end-of-life care needs of the patient and family have been met by the interdisciplinary team. The results are drawn from a larger longitudinal multimethod case study designed to understand how end-of-life care is provided to a diverse group of frail elders in an innovative, fully "integrated," managed care program. Data were generated from 120 social work surveys detailing care experiences and outcomes particular to 120 elder deaths. Significant predictors of perceived success for addressing patient needs included patient care needs (ß=0.17, P≤0.05), race (ß=0.19, P≤0.05), patient preferences elicited (ß=0.29, P≤0.01) and honored (ß=0.20, P≤0.05), and family conflict (ß=-0.24, P≤0.01). Significant predictors of perceived success for addressing family needs included family care needs (ß=0.30, P≤0.001), team and administrative resources (ß=0.19, P≤0.01), patient preferences honored (ß=0.16, P≤0.05), quality of relationship with patient (ß=0.27, P≤0.001) and family (ß=0.23, P≤0.01), and family conflict (ß=-0.31, P≤0.001). This study provides preliminary evidence of differential correlates and predictors of perceived success for addressing patient and family needs, highlighting the detrimental influence of family conflict. Future research is needed to better understand the kinds of assessment and intervention protocols that might prevent or ameliorate conflict and enhance structures and process-of-care variables to facilitate more successful outcomes.

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.

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.

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.

End-of-life concerns and care preferences: congruence among terminally ill elders and their family caregivers.

This study examined the end-of-life challenges, concerns, and care preferences of terminally ill elders and their family caregivers, with a focus on areas of congruence and incongruence. Ten elders and 10 family caregivers participated in separate, semi-structured, face-to-face interviews. Data analysis included team coding and thematic analysis, guided by an a priori set of categories based on the study questions. Shared challenges and concerns included experiencing decline, managing pain and discomfort, and living with uncertainty. There was also congruence regarding end-of-life care preferences, specifically the importance of quality care, treatment with dignity and respect, and avoiding unnecessary life-sustaining treatment. Areas of incongruence included the elders' difficulties in accepting dependence, their fears of becoming a burden, and desire to be prepared for death. Family caregivers were most concerned with providing adequate care to meet the elders' physical and spiritual care needs. Open family communication was associated with greater congruence. The authors discuss implications of these findings for research and intervention.

Challenges to providing end-of-life care to low-income elders with advanced chronic disease: lessons learned from a model program.

PURPOSE: This study explored the challenges in providing end-of-life care to low-income elders with multiple comorbid chronic conditions in a fully "integrated" managed care program, and it highlighted essential recommendations. DESIGN AND METHODS: A case-study design was used that involved an extensive analysis of qualitative data from five focus groups with interdisciplinary team members, two in-depth interviews with administrators, and open-ended survey responses from social workers detailing death experiences of 120 elders. RESULTS: Seven major themes characterized primary end-of-life care challenges: (a) the nature of advanced chronic disease; (b) the incapacity of support systems; (c) barriers to honoring care preferences; (d) challenges with characteristics and needs of participants; (e) needs of complex family systems; (f) barriers with transitions; and (g) barriers with culture and language. IMPLICATIONS: The lessons learned suggest recommendations with implications for program development, practice, policy, and future research.

Final transitions: family caregiving at the end of life.

BACKGROUND: This study aimed to understand how caregivers make the transition to end-stage caregiving and to illuminate its unique aspects using a stress process model. METHODS: Qualitative in-depth interviews were conducted with 74 caregivers of a family member who had been receiving hospice care for at least 2 weeks. Interviews were tape recorded, transcribed, and coded for emergent themes using constant comparative analysis. RESULTS: End-stage caregiving was characterized in the sample as (1) comprehension of terminality (the interrelationship of information, physical and cognitive decline, and personality change and role losses), (2) near-acute care, (3) executive functions, and (4) final decision making. The comprehension of terminality emerged from three interrelated experiences: receiving and assimilating concrete information about the illness, observing the progression of the disease, and observing the personality change and role loss. The primary stressors (unique end-stage caregiving tasks) were providing near-acute care, assuming an executive function, and beginning and final decision making. The secondary stressors were family role conflict, work conflict, and financial strain. Resources, such as intrinsic and extrinsic religious and faith practices and social support, were identified. Negative outcomes included intense emotional responses, and positive outcomes included heightened development of meaning making. CONCLUSION: The findings suggest that palliative care professionals have important opportunities to provide information and support to family caregivers during the final stages of the patient's terminal illness.

A national agenda for social work research in palliative and end-of-life care.

BACKGROUND: Social work practitioners have the potential to make meaningful contributions to improving palliative and end-of-life care because of their work in varied and divergent practice settings across the lifespan, their role in addressing mental health needs, grief and psychosocial aspects of well-being, and their commitment to promoting culturally competent, effective, and humane care, particularly for the most vulnerable and oppressed members of society. The federal government and several national and professional institutes have called for steps to increase the participation of social work researchers as well as to improve the quality, quantity, and dissemination of social work research. OBJECTIVE: This paper proposes a national agenda for social work research in palliative and end-of-life care. DESIGN: The agenda was developed by a multimethod effort that included an extensive analysis of the literature, discussions with a purposive national sample of social work leaders in palliative or end-of-life care, and consideration of established national research priorities. RESULTS: Eleven domains of palliative and end-of-life care and their related research objectives were identified. Their relevance to the mission and value base of the profession and to established national research priorities is highlighted. CONCLUSIONS: This research agenda should serve to stimulate social work research initiatives to improve palliative and end-of-life care, and ultimately inform direct practice, policy and professional education.

All aboard: advancing the social work research agenda in end-of-life and palliative care.

Social workers in all practice areas have the potential to contribute to the National Agenda for Social Work Research in Palliative and End-of-Life Care. The purpose of this article is to invite social work practitioners and researchers to identify research needs and work with others to address them. We offer a conceptualization of the broad scope of social work's involvement in end-of-life issues, and articulate the difference between end-of-life care and end-of-life issues in social work. Suggestions are offered to advance the national research agenda.

Family caregivers in palliative care.

This article defines caregiving broadly to include the informal (ie, unpaid) care provided by family members that goes beyond customary and normative social support provided in social relationships. Family caregivers in particular play significant roles in the care of elders with advanced chronic disease and in the context of palliative and end-of-life care. These caregivers typically are involved in critical medical decisions, provide vital assistance with activities of daily living, and carry out most nonpharmacologic and pharmacologic treatment recommendations for community-based elders. This article describes family caregivers and the costs of care and introduces the stress process model to highlight essential caregiving experiences and needs in the context of palliative care. Common interventions used to support caregivers are highlighted, and the bereavement experience among caregivers is discussed.