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.     

Hospice use by older adults knocking on the door of the nursing facility: implications for social work practice

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.     

Dementia Caregivers and Live Discharge from Hospice: What Happens When Hospice Leaves?

ABSTRACT

Hospice offers holistic support for individuals living with terminal illness and their caregivers. Some individuals receiving hospice services experience a slower decline in health as than expected, resulting in a ‘live discharge’ from hospice. A live discharge affects both patient and caregiver(s).The current study (N=24) explored the experiences of caregivers of adults with dementia who experienced a live discharge from hospice. Findings emphasize the comprehensive services covered under the Medicare Hospice benefit and those lost after a live discharge. Implications for social workers supporting caregivers are discussed, including the need to view the patient-caregiver unit during a live discharge.     

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.     

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.     

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.     

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.     

Barriers to the Use of Mental Health Services by African-American and Hispanic Elderly Persons

Abstract

This study discusses barriers to the utilization of community-based mental health services by African-American and Hispanic elderly persons. The study sample consists of “key Informants,” chosen because they were knowledgeable about the mental health needs and use of mental health services by African-American or Hispanic elderly persons. Principal component analysis using orthogonal rotation was conducted on the 23 item barrier scale and identified three levels of service barriers for the entire sample and for each subsample of African-American and Hispanic informants. Based upon the study findings, a number of strategies are offered to improve Utilization and overcome service delivery barriers.     

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.     

Values Important to Terminally Ill African American Older Adults in Receiving Hospice Care

While racial disparity in the use of hospice care by older African Americans is widely acknowledged, little is known about the values that they consider as important in receiving health care services along with direct experiences with having these values respected by hospice care providers. Using individual, face-to-face interviews, data were collected directly from 28 African American hospice patients about their experiences in hospice care. Content analysis was used to identify and categorize themes from multiple readings of the qualitative data. Resulting themes included: dying at home, open communications, independent decision-making, autonomy in daily life, unwillingness to be a burden, and relationships. Through the initial assessment, value preferences can be explored and then shared with hospice team members to ensure that services are provided in such a way that their values and preferences are respected.     

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.     

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.     

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 Elder Latino Population in Holyoke,MA

Abstract

Holyoke's elderly Latino population's needs, as well as their patterns of service utilization, were explored through detailed interviews of 13 individual elders and a focus group of an additional 10 participants. The research uncovered a gap in the web of resources available, with some services, such as medical care, functioning well. However, there continue to be unmet needs, particularly in the areas of transportation, social and recreational activities, and sense of safety. Negative perceptions of aging and complaints of anxiety, depression, and boredom are also an area of concern.

The barriers to use of services were also explored. Recommendations for the enhanced provision and utilization of services, many suggested by the elders themselves, are offered. Implications for social work research and policy on, and practice with, Latino elders 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.     

Service Barriers of Chinese Family Caregivers in Canada

ABSTRACT

Family caregiving is a stressful process, especially when the complexity of being an immigrant or ethnic minority is added. This paper examined service barriers experienced by Chinese immigrant family caregivers in Canada and the predictors of different types of barriers. Principle component analysis was performed with the barriers reported loading onto cultural barriers, administrative problems, circumstantial challenges, perceived negative quality of services, and personal attitudes. Multiple regression analysis was used to identify the role of the culture-related factors in predicting service barriers, controlling for socio-demographic status of the caregivers'. The results show that financial factors significantly predicted the number and types of barriers reported by the caregivers. Culture-related factors were significant in predicting the total number of access barriers and the different types of barriers experienced by the family caregivers. The findings indicate the importance of culturally sensitive support for family caregivers in order to reduce the access barriers.     

Treatment Barriers to Social and Health Care Services from the Standpoint of Female Substance Users in Finland

Abstract

This qualitative study discusses barriers affecting female substance user’s treatment access to welfare services. The study consisted of seven group discussions and three individual meetings with 13 women in Helsinki, Finland. Institutional ethnography was used as the theoretical framework for the study. The research questions are: (a) What treatment barriers do women face?, (b) What reasons are there for them not receiving services?, and (c) How do the ruling relations coordinate women’s experiences? Women faced multiple barriers affecting their access to services. They could be interpreted as being: determined by the service system, such as a difficulty in meeting the various criteria in order to be granted access to services; determined by the lack of trust; or determined by personal choices. The study suggests that the service system should be organized according to the needs of the service users. Future research is needed to address the questions such as how social and health care services could better co-operate, and how the different sectors of the service system could break down the institutional barriers.     

Social Workers’ Perceptions of Job Satisfaction,Interdisciplinary Collaboration,and Organizational Leadership

ABSTRACT

To address job satisfaction, and therefore employment retention, of hospice social workers, this study examined how relationships with other members of the interdisciplinary hospice team and perceptions of hospice leadership may be associated with job satisfaction of hospice social workers. The sample of 203 hospice social workers was recruited by e-mailing invitations to hospice social workers identified by hospice directors in three states, use of online social media sites accessed by hospice social workers, and snowball sampling. Study measures included professional experience, hospice characteristics, interdisciplinary collaboration, perception of servant leadership, and intrinsic and extrinsic job satisfaction. Variables significant in the model for intrinsic satisfaction were perception of servant leadership, interdisciplinary collaboration, and feeling valued by the hospice physician. Variables significant in the model for extrinsic satisfaction were perception of servant leadership, interdisciplinary collaboration, feeling valued by the hospice physician, and number of social workers at the hospice. Interdisciplinary collaboration was more important for intrinsic job satisfaction and leadership style was more important for extrinsic job satisfaction. Profit status of the hospice, experience of the social worker, caseload size, and other variables were not significant in either model. These results support previous findings that leadership style of the hospice director and relationships with hospice colleagues are important for hospice social workers’ job satisfaction. Such low-cost modifications to the hospice work environment, albeit not simple, may improve job satisfaction of hospice social workers.     

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.