Burnout and Death Anxiety in Hospice Social Workers

Hospice work has been regarded as particularly stressful due to the complexity inherent in the provision of end-of-life care. Burnout and death anxiety are especially relevant to hospice social workers because they regularly function in a high-stress, high-loss environment. The purpose of this study was threefold: to determine the prevalence of burnout and death anxiety among hospice social workers; to examine associations between burnout and death anxiety; and to explore the factors which may contribute to the development of death anxiety and burnout. Participants completed four items: the Maslach Burnout Inventory-Human Services Survey (MBI-HSS), the Death Anxiety Questionnaire (DAQ), a demographic questionnaire, and a set of open-ended questions. Findings indicate that mean scores on the subscales of the MBI-HSS ranged from the low to moderate range and that a strong positive correlation existed between death anxiety and the depersonalization subscale of the MBI. Three key themes emerged from the qualitative data: (a) personal interest in hospice social work developed through a variety of ways; (b) although death anxiety decreased from exposure and understanding of the death process, there was increased death anxiety surrounding working with certain patients; and (c) burnout was primarily related to workload or difficult cases.     

Beliefs,Death Anxiety,Denial, and Treatment Preferences in End-of-Life Care

Abstract

This study examined cultural and religious beliefs, death anxiety, denial, and medical treatment preferences in end-of-life care in a sample of social work students, community residents, and medical students in a mid-western city of 49,000. Results indicated that most social work students, community residents, and medical students preferred palliative as opposed to life-prolonging care during terminal illness. The three groups differed in cultural and religious beliefs and all three reported a moderate amount of death anxiety. Students reported less denial of terminality than community residents. Implications for personal and professional preparation to provide end-of-life care are discussed.     

“They Don't Want to Hear Us”

Abstract

This study used focus groups to understand Hispanic elders' and adult children's concerns about end-of-life planning. Ten older persons participated in the elders group, and ten adult children in a separate group. Themes in both groups included communication, control, burden, spirituality, religious issues, and importance of family relationships. Communication regarding end-of-life planning was of particular importance to both elders and adult children. The most striking indication of the challenges in communication about end-of-life issues is the insistence by both the elders and the adult children that their children/parents do not want to have these discussions.     

End-of-Life Conversations and Hospice Placement: Association with Less Aggressive Care Desired in the Nursing Home

Education about end-of-life care and treatment options, communication between family and health care providers, and having advance directives and medical orders in place are important for older adults with chronic, progressive decline and end-stage disease who spend their last days in the nursing home. This study used retrospective data (6 months before death) of long-stay nursing home decedents (N?=?300) taken from electronic health records to capture the end-of-life experience. Findings showed for almost all decedents, Do Not Resuscitate and Do Not Intubate orders were in place, and just over one-half had Do Not Hospitalize and No Artificial Feeding orders in place. A small proportion had No Artificial Hydration or No Antibiotic orders in place. Overall, there was congruence between documented medical orders and treatment received. Findings showed that use of hospice and discussions about particular life-sustaining treatments each had significant associations with having less aggressive medical orders in place. These results can inform best practice development to promote high quality, person-directed, end-of-life care for nursing home residents.     

The Impact of Prison Hospice

Abstract

This study reports on a qualitative national telephone survey with coordinators of 14 prison hospice programs in 11 states. The rationale behind the survey was to learn about interdisciplinary collaboration between social work and criminal justice, using prison hospice as an exemplar of this collaboration. In addition to learning that all prison hospices in the study operate using an interdisciplinary team model and that most report high quality collaboration on the hospice team, the following additional five themes emerged: administrators and wardens are very supportive while correctional staff provides mixed support to team and program; greater collaboration with those outside prison hospice is critical; collaboration through prison hospice has a positive impact on dying prisoners; collaboration through prison hospice has a positive impact on prisoner volunteers; and, collaboration through prison hospice has a positive impact on the entire culture of the prison.     

Family-Centered Care

Abstract

Recent trends in medicine reflect an attempt to be more patient-centered and while this is progress from the disease- or provider-focused model familiar in healthcare, the experiences and contributions of family as caregivers continue to be overlooked in some settings. The family-centered care model, developed most notably in pediatrics, but emerging in HIV, cancer, and aging, is presented as a resource to increase family involvement at the end of life. In this paper, family-centered care is defined, caregiving trends including support needs of formal and informal caregivers are discussed, and barriers to family-centered services are identified. Reintroducing family into the focus of care at the end of life is the primary goal of this paper. The family-centered model of care offers an appropriate framework for understanding the value of family in end-of-life care and fits well with social work perspectives that understand individuals in the context of their family system and greater environment.     

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.     

Hospice Use by Older Adults Knocking on the Door of the Nursing Facility

Abstract

Since 1983, federal funding has been available for hospice services. However, research studies have found that hospice is underutilized by people with terminal illnesses and their families. Low-income older adults are particularly at risk for underutilization. This study examined utilization of hospice services by nursing home applicants in one Midwestern state. Characteristics of users and non-users, and potential barriers to hospice use were examined. Findings further document that hospice is underutilized, especially by the Medicaid population, and point to barriers to hospice utilization. Specific recommendations are made to help practitioners increase hospice access.     

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.     

Advance Care Planning Throughout the End-of-Life

Abstract

Advance care planning throughout the end-of-life is an increasingly important aspect of professional practice with older adults and their families. As the nation's population continues to live longer, more and more people will experience years of functional and cognitive decline prior to death. This article discusses the growing importance of advance care planning using a long-range, holistic perspective of examining care needs throughout the end of life. End-of-life care is conceptualized by three trajectories of decline leading to death, with about two-thirds of all older adults succumbing to four key conditions: congestive heart failure, emphysema, frailty, and dementia. Research regarding the advance care planning needs of older adults with the key conditions is presented. Further research is needed to enhance social work practice in this area.     

Live Discharge from Hospice and the Grief Experience of Dementia Caregivers

When an individual has dementia, family members are involved in many care transitions in their roles as caregivers. One such transition is the ‘live’ discharge from hospice services. This occurs when an individual no longer meets eligibility criteria. This can be difficult for caregivers who have been anticipating an end to understand in the context of their grief process. This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer’s disease, who experienced a ‘live’ discharge from hospice. Specifically, the experience of grief is examined. Results from this study highlight the complexity of caring for someone with a terminal disease and the grief experience in end-of-life care as caregivers struggle to understand the individual’s terminal prognosis as temporary. This is further complicated for caregivers who must resume caregiving responsibilities or assume a new caregiving role after experiencing a loss of hospice services. Finally, hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a ‘live’ discharge.     

The Attitudes of Social Work Students Toward End-of-Life Care Planning

This study examined the attitudes of social work students toward end-of-life care planning, as well as their degree of willingness to engage in this area of social work practice. Factors associated with their attitudes were measured through structured surveys completed by 102 social work students (N = 102) at a school of social work in the southeast. Results indicated that these social work students tended to have positive attitudes toward end-of-life care planning in general. Moreover, these attitudes were positively associated with preference for pain relief treatment, higher levels of comfort when discussing death, more emphasis on self-determination, and apprehension of conflicts of self-determination. The results of this study underscored the increased societal need for recognition of personal preferences in end-of-life care, higher levels of comfort when discussing death, and an increased commitment of social workers' to maintaining the ethical principle of the client's right to self-determination in end-of-life planning. While this is not surprising, it points to a continuing need to re-assess where the field stands in its preparation of social work professionals who will work closely with people who are dying and their families.     

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.     

Caring for Individuals with Chronic Illness and Minor Depression: Latino Perceptions of Caregiver Burden

ABSTRACT

Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.     

Facilitating Forgiveness and Peaceful Closure

Abstract

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.     

The Grief Experience of Prison Inmate Hospice Volunteer Caregivers

Correctional institutions are obligated to provide end-of-life care to a population with complex medical needs. Prison hospices are increasingly being formed to address this demand. Few empirical studies have examined the impact of caring for dying inmates on the hospice inmate volunteers, who, in several prison health care systems, provide direct care. In this study, experiences of the inmate hospice volunteers with death were investigated to illuminate their grief processes. Understanding the bereavement needs of hospice volunteers and how prison hospice volunteers navigate grief and remain committed to providing excellent hospice care can inform the grief processes and practices of hospice care professionals.     

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.     

Calling the Question of “Possible Dying” Among Nursing Home Residents

Abstract

Glaser and Strauss reported decades ago that in order for a person to be treated as dying, he/she must be defined as dying. Defining nursing home residents as “dying” can be complicated because most residents are in advanced old age with multiple chronic conditions. Using a social construction theoretical framework, this study looks at the step before the declaration of dying, that is, the consideration of the possibility of dying. This qualitative study is a secondary analysis of prospective data collected during 16 months of fieldwork on behalf of 45 nursing home residents whose health was considered declining. The purpose of this paper is to build understanding about the social construction of “possible dying” by reporting triggers that can call the question of possible dying and stimulate a discussion about the nursing home resident's status, prognosis, care options, and preferences. These triggers include: Health status decline; noncompliance with diet or medications; available medical interventions not being well suited for the residents; and family consideration of an out-of-town trip. The paper also reports barriers (family, staff, and disease process) and facilitators to calling the question of possible dying, including families having a sense of treatments they would like to avoid and having the opportunity to talk through options. Findings are discussed in light of basic assumptions of social construction. Implications for social workers include helping residents, families, and staff anticipate and address the possibility of dying, and to reflect these discussion in care plans, as well as the need to be available to help residents and family members with psychosocial issues related to living and dying in the nursing home setting, including the profound issues that can be provoked or exacerbated by resident health status decline and possible dying.