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

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.

A mobile hospice nurse teaching team's experience: training care workers in spiritual and existential care for the dying - a qualitative study.

BACKGROUND: Nursing home and home care nursing staff must increasingly deal with palliative care challenges, due to cost cutting in specialized health care. Research indicates that a significant number of dying patients long for adequate spiritual and existential care. Several studies show that this is often a source of anxiety for care workers. Teaching care workers to alleviate dying patients' spiritual and existential suffering is therefore important. The aim of this study is to illuminate a pioneering Norwegian mobile hospice nurse teaching team's experience with teaching and training care workers in spiritual and existential care for the dying in nursing homes and home care settings. METHODS: The team of expert hospice nurses participated in a focus group interview. Data were analyzed using a phenomenological hermeneutical method. RESULTS: The mobile teaching team taught care workers to identify spiritual and existential suffering, initiate existential and spiritual conversations and convey consolation through active presencing and silence. The team members transferred their personal spiritual and existential care knowledge through situated "bedside teaching" and reflective dialogues. "The mobile teaching team perceived that the care workers benefitted from the situated teaching because they observed that care workers became more courageous in addressing dying patients' spiritual and existential suffering. DISCUSSION: Educational research supports these results. Studies show that efficient workplace teaching schemes allowexpert practitioners to teach staff to integrate several different knowledge forms and skills, applying a holisticknowledge approach. One of the features of workplace learning is that expert nurses are able to guide novices through the complexities of practice. Situated learning is therefore central for becoming proficient. CONCLUSIONS: Situated bedside teaching provided by expert mobile hospice nurses may be an efficient way to develop care workers' courage and competency to provide spiritual and existential end-of-life-care. Further research is recommended on the use of mobile expert nurse teaching teams to improve nursing competency in the primary health care sector.

Factors associated with the provision of hospice care for children.

CONTEXT: Children at the end of life often lack access to hospice care at home or in a dedicated facility. The factors that may influence whether or not hospices provide pediatric care are relatively unknown. OBJECTIVES: The purpose of this study was to understand the institutional and resource factors associated with provision of pediatric hospice care. METHODS: This study used a retrospective, longitudinal design. The main data source was the 2002 to 2008 California State Hospice Utilization Data Files. The sample size was 311 hospices or 1368 hospice observations over seven years. Drawing on institutional and resource dependence theory, this study used generalized estimating equations to examine the institutional and resource factors associated with provision of pediatric hospice care. Interaction terms were included to assess the moderating effect of resource factors on the relationship between institutional factors and provision of care. RESULTS: Membership in professional groups increased the probability (19%) of offering hospice services for children. Small- (-22%) and medium-sized (-11%) hospices were less likely to provide care for children. The probability of providing pediatric hospice care diminished (-23%) when competition increased in the prior year. Additionally, small size attenuated the accreditation-provision relationship and medium size magnified the membership-provision relationship. CONCLUSION: Professional membership may promote conformity to industry standards of pediatric care and remove the unknowns of providing hospice care for children. Hospices, especially medium-sized hospices, interested in developing or expanding care for children may benefit by identifying a pediatric champion to join a professional group.

US hospice industry experienced considerable turbulence from changes in ownership, growth, and shift to for-profit status.

The US hospice industry, which provides palliative and supportive care to patients with terminal illness, has undergone substantial changes during the last decade. The magnitude of these changes has not been fully captured in previous studies or reports. In this longitudinal study of hospices active in Medicare during 1999-2009, we analyzed Provider of Services files to understand key shifts in the industry. We found evidence of substantial turbulence. One-fifth of Medicare-certified hospices active in 1999 had closed or withdrawn from the program by 2009, and more than 40 percent had experienced one or more changes in ownership. The most prominent trend was the shift in ownership type from nonprofit to for-profit ownership. Four out of five Medicare-certified hospices that entered the marketplace between 2000 and 2009 were for-profit. Hospices also became larger, as the proportion with 100 or more full-time employees doubled to 5 percent from 1999 to 2009. Although each of the Census regions had more hospices in 2009 than in 1999, the geographic distribution of hospices in the country changed, with proportionally more in the South and West. The impact of all of these changes on cost and quality of hospice care, as well as patient access, remains a critical area for future research.

Community supply of hospice: does wealth play a role?

CONTEXT: Hospice is underused by older, rural, and minority populations. OBJECTIVE: Because local availability of hospice is an important predictor of use, we aimed to identify geographic variation in hospice supply and examine its community-level determinants, including wealth. METHODS: This was an observational geographic study using the 2008 National Hospice and Palliative Care Organization's National Data Set and the 2,000 U.S. census data for 3,140 U.S. counties. Our outcome of interest was hospice supply defined according to the number of hospice programs (regardless of level of care) servicing each county. We used binomial multivariable regression to test the relationship between supply and log-transformed counts of population, African Americans, Hispanics, residents aged 65, and high school educated residents as well as area, median household income, and certificate of need status. RESULTS: Hospice availability varied greatly across the United States, with an unadjusted mean of 24.3 hospice programs servicing each county (standard deviation 19.7, range 0-160). After adjusting for all covariates, median household income (incidence rate ratio [IRR] 1.03, P < 0.001), population count (IRR 17.9, P < 0.001), count of African Americans (IRR 1.26, P < 0.001) and elderly adults (IRR 2.81, P < 0.001) positively predicted supply, whereas area (IRR 0.84, P < 0.001), certificate of need status (IRR 0.89, P < 0.001), count of Hispanics (IRR 0.86, P < 0.01), and high school educated (IRR 0.03, P < 0.001) negatively predicted supply. CONCLUSION: There is gross variation in hospice supply that can be explained by community wealth, population density, age, ethnicity, and race. To address disparate utilization of hospice, the relationship between wealth and availability will need to be better understood.

Informal caregivers of cancer patients: perceptions about preparedness and support during hospice care.

This study examined the perceptions of preparedness and support of informal caregivers of hospice oncology patients. Respondents included coresiding, proximate, and long-distance caregivers. Thematic analysis was used to analyze the qualitative data from 2 caregiver surveys, one administered prior to the care recipient's death and another completed 3 months postdeath. Respondents (N = 69) interpreted preparedness broadly and identified multiple sources of support including hospice personnel, family, friends, neighbors, and spiritual beliefs. Additionally, informational support, such as education, information, and enhanced communication were considered essential for preparing and supporting caregivers. Implications for social work research and practice are provided.

Patterns of community-based end-of-life care in rural areas of the United States.

There is relatively little empirical data on the supply of community-based end-of-life (EOL) providers especially in rural areas despite projections for growth. This study examined the availability of community-based EOL providers in eight states using mapping techniques and statistical approaches. Analysis of variance and geographic information system approaches were used to compare the availability of community-based EOL providers at the county level by degree of rurality. Examining numbers of rural counties by provider, it was found that hospices were the least available community-based EOL providers in rural counties with 62% to 92% of rural counties not having hospice providers (exception: Vermont). When examining the number of providers by population older than 65 years, few differences were found. It is concluded that there are substantially fewer hospice providers in the most rural areas, raising issues of access to care. Examination of both unadjusted and adjusted numbers of providers is important to understand community-based EOL provider supply.

Hospice utilization during the SARS outbreak in Taiwan.

BACKGROUND: The severe acute respiratory syndrome (SARS) epidemic threw the world into turmoil during the first half of 2003. Many subsequent papers have addressed its impact on health service utilization, but few have considered palliative (hospice) care. The aim of the present study was to describe changes in hospice inpatient utilization during and after the SARS epidemic in 2003 in Taiwan. METHODS: The data sources were the complete datasets of inpatient admissions during 2002 and 2003 from the National Health Insurance Research Database. Before-and-after comparisons of daily and monthly utilizations were made. Hospice analyses were limited to those wards that offered inpatient services throughout these two years. The comparisons were extended to total hospital bed utilization and to patients who were still admitted to hospice wards during the peak period of the SARS epidemic. RESULTS: Only 15 hospice wards operated throughout the whole of 2002 and 2003. In 2003, hospice utilization began to decrease in the middle of April, reached a minimum on 25 May, and gradually recovered to the level of the previous November. Hospices showed a more marked reduction in utilization than all hospital beds (e.g. -52.5% vs. -19.9% in May 2003) and a slower recovery with a three-month lag. In total, 566 patients were admitted to hospice wards in May/June 2003, in contrast to 818 in May/June 2002. Gender, age and diagnosis distributions did not differ. CONCLUSION: Hospice inpatient utilization in Taiwan was indeed more sensitive to the emerging epidemic than general inpatient utilization. A well-balanced network with seamless continuity of care should be ensured.

Equity of access to adult hospice inpatient care within north-west England.

There is a growing debate about the question of equity of access to hospice and palliative care services. Even countries with relatively well developed palliative care systems are considered to have problems of access and inequity of provision. Despite these concerns, we still lack a relevant evidence base to serve as a guide to action. We present an analysis of access to adult hospice inpatient provision in the north-west region of England that employs Geographical Information Systems (GIS). Measures of the possible demand for, and supply of, hospice inpatient services are used to determine the potential accessibility of cancer patients, assessed at the level of small areas (electoral wards). Further, the use of deprivation scores permits an analysis of the equity of access to adult inpatient hospice care, leading to the identification of areas where additional service provision may be warranted. Our research is subject to a number of caveats--it is limited to inpatient hospice provision and does not include other kinds of inpatient and community-based palliative care services. Likewise, we recognise that not everyone with cancer will require palliative care and also that palliative care needs exist among those with nonmalignant conditions. Nevertheless, our methodology is one that can also be applied more generally.

What is palliative care in Germany? Results from a representative survey.

The recent development of palliative care inpatient units in Germany has been impressive. As a first step for quality assurance, a core documentation form was developed in 1996. The core documentation form consisted of 4 pages with 35 items documenting physical and psychosocial symptoms at the time of admission, diagnostic and therapeutic procedures before and during inpatient treatment, and outcome of physical and psychosocial dimensions. Checklists were used for most items and free text entries could be added. Of the 65 palliative inpatient units in Germany, 44 participated in the second phase of the evaluation of the core documentation in 2000. Eight units were affiliated with anesthesiology departments, 31 with internal medicine, two with radiotherapy, 1 with a surgical department, and 2 units were not affiliated with a department of the hospital. A total of 1087 patients were assessed in the 44 units during a period of up to 3 months. There was a high variability between units in all checklist items of the core documentation. Compared to units affiliated with internal medicine departments, units affiliated with anesthesiology departments performed less chemotherapy, but more immunotherapy; gave fewer infusions and blood transfusions but more skin and wound care, and more lymphatic drainage and massage; and documented psychosocial interventions more frequently for patients as well as for relatives. In one-third of the patients, a consent for omission of therapeutic options was documented. Inpatient treatment ended with the death of the patient in 45.3% of patients and with discharge in 51.6% (not documented 3.1%). The efficacy of inpatient treatment was rated very high by the staff. In conclusion, we found large variation in the documentation pertaining to palliative care patients at the time of admission, as well as for inpatient treatment, among palliative care units in Germany. This was related to the affiliation of the units at least to some degree, but also to differences in interests and documentation discipline. We suggest that training procedures for documentation should be included in crossectional surveys, as the results may not be comparable otherwise. However, common documentation instruments may be the first step towards an interdisciplinary discussion on aims and methods in palliative care.

Hospice and nursing homes.

In this article a descriptive analysis of nursing homes with special care hospice units is provided. These are compared to nursing homes with other special care units and to nursing homes without any special care units. An analysis of the determinants of nursing homes with special care hospice units is also provided. Factors such as ownership, staffing levels, having other special care units, case-mix intensity, competitiveness of the nursing home market, and the state Medicaid reimbursement rate structure are examined. Finally, the influence of policies on hospice care in nursing homes is discussed.