Characteristics of patients receiving hospice care at home versus in nursing homes: results from the National Home and Hospice Care Survey and the National Nursing Home Survey

This study examined 1170 deceased home hospice patients from the 1998 National Home and Hospice Care Survey and 617 deceased nursing home hospice patients from the 1997 and 1999 National Nursing Home Surveys. T tests and Bonferroni adjustments for multiple comparisons were performed to assess differences in characteristics of patients receiving hospice care at home versus in nursing homes. We found that the nursing home hospice population differs significantly from the home hospice population in the United States. Nursing home hospice patients were more likely to be older, have Medicaid as their primary payment source, have dementia and other noncancer primary diagnosis, and receive dietary/nutrition service, medication management, and physician services than home hospice patients.     

Coverage of cancer patients by hospice services, South Australia, 1990 to 1993

Abstract: A population-based observational study of South Australian cancer patients was used to identify: the level of coverage of cancer patients by hospice services; the types of patients who miss out on hospice care; and the place of death of hospice and other cancer patients. We reviewed patients who died in 1990 and 1993 using the Central Cancer Registry database together with an identifier of hospice involvement. In 1990, 56 per cent of cancer patients who died had care from a hospice service, and this proportion increased to 63 per cent in 1993. Elderly patients, rural residents and those with a haematological malignancy were less likely than other patients to receive care from a hospice service, while patients aged between 40 and 60 years, longer survivors and those born in the United Kingdom and Europe were more likely to receive hospice care. Hospice involvement increased significantly between 1990 and 1993 for patients who died at home (59 to 73 per cent), in nursing homes (20 to 45 per cent), private hospitals (33 to 52 per cent) and public hospitals (48 to 55 per cent), but the proportion of patients with hospice involvement who died in country hospitals remained at 45 per cent. The increase in hospice coverage of terminal cancer patients reflects the continued integration of hospice care into the mainstream of health care delivery. The types of patients who miss out on hospice services should be given special consideration in the future planning of terminal care services. ( Aust N Z J Public Health 1998; 22: 45-8)     

Characteristics of dementia end-of-life care across care settings

End-of-life care for persons with dementia in different care settings was retrospectively surveyed. In this sample, care recipients receiving hospice care and pain control stayed at home longer and were more likely to die at home. Psychiatric symptoms increased caregiver burden and were the most common reason for admission to an institution, and psychiatric care was associated with longer stay at home. Presence of advance directives decreased hospital stay and increased the likelihood of dying in a nursing home. Care recipients dying at home had fewer symptoms and less discomfort than care recipients dying in other settings. These results indicate that quality end-of-life care can be provided at home and is facilitated by hospice programs, effective pain control, and psychiatric care.     

Hospice in the Nursing Home: Perspectives of Front Line Nursing Home Staff

ObjectiveUse of hospice has been associated with improved outcomes for nursing home residents and attitudes of nursing home staff toward hospice influences hospice referral. The objective of this study is to describe attitudes of certified nursing assistants (CNAs), nurses, and social workers toward hospice care in nursing homes.Design, setting, and participantsWe conducted a survey of 1859 staff from 52 Indiana nursing homes.MeasurementsStudy data include responses to 6 scaled questions and 3 open-ended qualitative prompts. In addition, respondents who cared for a resident on hospice in the nursing home were asked how often hospice: (1) makes their job easier; (2) is responsive when a patient has symptoms or is actively dying; (3) makes care coordination smooth; (4) is needed; (5) taught them something; and (6) is appreciated by patients/families. Responses were dichotomized as always/often or sometimes/never.ResultsA total of 1229 surveys met criteria for inclusion. Of the respondents, 48% were CNAs, 49% were nurses, and 3% were social workers; 83% reported caring for a nursing home patient on hospice. The statement with the highest proportion of always/often rating was ‘patient/family appreciate added care’ (84%); the lowest was ‘hospice makes my job easier’ (54%). More social workers responded favorably regarding hospice responsiveness and coordination of care compared with CNAs (P = .03 and P = .05, respectively).ConclusionsA majority of staff responded favorably regarding hospice care in nursing homes. About one-third of nursing home staff rated coordination of care lower than other aspects, and many qualitative comments highlighted examples of when hospice was not responsive to patient needs, representing important opportunities for improvement.     

Variation in Hospice Experiences by Care Setting for Patients With Dementia

ObjectivesUse of hospice care among patients with dementia has been steadily increasing. Our objectives were to characterize quality of hospice care experiences among decedents who had a primary diagnosis of dementia and their caregivers and investigate differences across settings of hospice care.DesignWe analyzed Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from caregiver respondents whose family members received hospice care.Setting and ParticipantsData from 96,845 caregiver respondents whose family members had a primary diagnosis of dementia and died in 2017 or 2018 while receiving hospice care in 2829 hospices.MethodsWe calculated quality measure scores overall and stratified by setting, adjusting for mode of survey administration and differences in case mix, and examined variability in hospice-level scores among decedents with dementia.ResultsMean quality measure scores ranged from 69.0 (Getting Hospice Care Training) to 90.9 (Getting Emotional Support). Measure scores varied significantly across settings, with caregivers of decedents who received care in a nursing home (NH), acute care hospital (ACH), or assisted living facility (ALF) consistently reporting poorer quality of care. Hospice-level scores varied substantially, with a wide range between the 10th and 90th percentiles of hospice performance (eg, 25 points).Conclusions and ImplicationsThere are important opportunities to improve hospice care for patients with dementia and their caregivers, particularly with respect to caregiver training, symptom management, and across all dimensions within the NH, ACH, and ALF settings. Variability in care experiences across hospices, as well as long lengths of stay for those with dementia, highlight the importance of informed and timely hospice referral.     

Continuum of care comes full circle. Adding hospice care allows a Denver system to better meet patient needs

In November 1993 Hospice of Peace, a home hospice program in Denver, was reorganized under a new joint sponsorship of Provenant Health Partners and Catholic Charities and Community Services. Home hospice completes Provenant's continuum of healthcare. Based on the campus of Provenant Senior Life Center, Hospice of Peace employs multidisciplinary professionals who care for patients and their family care givers in their homes. Each hospice team works with a patient's physician and comes from a pool of primary care nurses, certified nurse assistants, social workers, counselors, pastoral care counselors, and specially trained volunteers and bereavement counselors. Respect for human life at all stages is the ethic behind the organizations' hospice efforts. Even at life's end, when aggressive medical treatment is no longer appropriate, healthcare professionals can enhance patients' quality of life and provide bereavement support to their loved ones. Just as Catholic healthcare addresses the spiritual component of healing, so it addresses the spiritual component of dying.     

Where do cancer patients die?

The great concern over the status and care of the dying cancer patient requires the understanding of current trends in care. An 18-year review of 55,288 death certificates of patients with cancer in Cuyahoga County, Ohio (1957--1974) revealed that 35,381 patients (65%) died in acute and chronic care hospitals, 8,251 patients (15%) died in nursing homes, and 11,242 patients (20%) died at home. Trends over the 18-year period demonstrated a shift from patients dying at home to patients dying in nursing homes. The hospital care of dying cancer patients remained unchanged during the study period. An analysis of 33 consecutive patients dying of cancer over a six-month period in an acute care hospital in Cuyahoga County showed an average length of stay of 20.1 +/- 15.7 days, during which only palliative care was provided. The cost benefit of home care/hospice programs is related to the final hospital stay of the dying cancer patient.     

Communication and awareness about death: a study of a random sample of dying people

The literature suggests that doctors' and nurses' openness about communicating with the terminally ill and their families has increased in the past two or three decades, partly influenced by the hospice movement. The present study reports the perceptions of relatives, hospital doctors, general practitioners and nurses who knew a random sample of 639 adults dying in England in 1987. The results from professionals suggest a general preference for openness about illness and death, tempered by the consideration that bad news needs to be broken slowly, in a context of support, while recognising that not everyone wishes to know all. In practice people dying from cancer were more likely to be reported as knowing what their illness was and that they would die than were people dying from other conditions. This difference held when controlling for the fact that death was more likely to be medically expected in cancer. Comparisons with 1969 show that the increases were due largely to cancer patients being told the truth more frequently by hospital doctors. This may be due to changed practices, or to the increase in the number of hospital episodes in the last year of life. Nevertheless, situations of 'closed awareness' where relatives were told and patients were not, and situations where patients were left to guess the likely outcome for themselves, were still quite common in 1987. Nurses and hospice practitioners were only marginally involved in breaking bad news, this remaining the province of hospital doctors and general practitioners. Relatives in general praised the manner in which they and patients were told, although a small proportion reported insensitive practice. In retrospect a high proportion of both relatives and professionals felt that the levels of awareness were best as they were, although this preference may have been influenced by a desire to see things in a good light. Most relatives reported adequate support and information being given by professionals to them during the patient's illness. On the whole, doctors provided information, and friends and family provided emotional support to relatives. Again, hospital doctors played an increasingly important role compared to 1969 in providing information, with general practitioners' role decreasing in this area. Gaps in information included not being told enough about what was wrong with the patient, not being told the reasons for decisions about treatment and, to a lesser extent, not being given information about how to care for the patient.     

Elisabeth Kübler-Ross-Nurekr renewal center: health care based on the hospice model

The hospice model is a movement concerned with the care of the dying patient and its family. It's main aim is to comfort and give nursing assistance to terminal patients, giving the patient and family more decision making power than it would have in regular hospitals. The Hospice is not a geographic, territorial space, defined as what we call an "institution". It is more than that, it is an attitude, a behavior towards death and dying. This paper reports on the experience of a multi-professional team' which implemented hospice model care in the Nursing School of the Federal University of Bahia. The study showed that there is a need to understand and study tanathology, to change one's changing attitude towards death and dying, and to develop the ability to deal with one's own terminability.     

Threats to the good death: the cultural context of stress and coping among hospice nurses

This study uses Australian data based on interviews with nurses and participant observation in an in-patient hospice and a community based hospice service to demonstrate how hospice nurses perceive stress in their work environment and cope with caring for dying patients. Stressors are discussed within a cultural context and are viewed as threats to the nurses' shared system of values which centres on the Good Death. The Good Death is conceptualised as a series of social events that involve the dying person as well as the other interactants who may include family, friends and health professionals. The death is defined as ‘good’ if there is an awareness, acceptance and preparation for death by all those concerned. The nurses' coping strategies and social supports are negotiated within the context of the hospice environment, and relate directly to the protection and affirmation of the nurses' shared value system.     

On the meanings and experiences of living and dying in an Australian hospice

Drawing on qualitative interviews with patients near death, in this article we explore people's experiences of living and dying in a hospice in-patient unit. The results illustrate the tensions and complexities of entering into the hospice environment and how its character (i.e. people, interactions and spaces) shapes experiences near death.The results illustrate the hospice in-patient unit as playing a vitally important role in supporting the end of life, but also, the unique challenges this environment presents to individual well-being. Key themes emergent from the interviews were: loss of self and identity nostalgia; liminality and the home/help dialectic; and the performative elements of dying. To explore and unpack these processes, we draw together different facets of previous conceptual work in sociology, working towards a more nuanced conceptualization of the in-patient hospice experience.     

Terminal care preferences: hospice placement and severity of disease

National Hospice Study data for 1981-82 were used to predict the location of care for terminal cancer patients. Sites of care were conventional care in hospitals, hospital-based hospice care, and hospice care in the home. Subjects were terminal cancer patients with a prognosis of less than 6 months of life who were attended by a primary concerned person. There were 1,732 patients 18-99 years old-293 conventional care, 612 hospital-based hospice care, and 827 hospice home care patients. Data sources were the patient, the primary concerned person, the family, and the medical record. Data were obtained at initial interview for the study, 1-week followup, reassessment every 2 weeks, and bereavement interviews. Information was grouped in the following categories: patient functional status, patient psychological outlook, symptomatology, medical condition, and characteristics of the primary concerned person and family. Conclusions were reached by univariate and multivariate analysis. First, a progression of functional disability was found to exist among care sites, from hospice home care for the least disabled to hospital-based hospice care to conventional care for patients with the greatest disabilities. The location of care was best explained by the patient's functional capacity. Second, the location of care was found to be poorly explained by extent of organ involvement or specific symptoms. Third, the primary concerned persons of patients under hospice home care experienced more stress but reacted no differently when compared with primary concerned persons at other care sites. Fourth, patients under hospice home care survived the longest and reported greater family closeness than other care groups.     

Need satisfaction in terminal care settings

Research comparing hospice and conventional programs of care for the terminally ill has identified few measurable differences in the care provided to patients and their families. Nonetheless, hospice recipients frequently express a higher level of satisfaction with their program of care. This study compared the ability of hospice and conventional care settings to meet the basic emotional needs of families during a member's dying and death from cancer. In addition, the relationship of basic needs satisfaction, perceptions about the nurse, and overall satisfaction with the program of care were explored. One hundred bereaved familial care givers completed a mail questionnaire concerning their perceptions of care at the site of a family member's death. The sites were (1) the home, with care provided by a Medicare certified, community-based hospice program: (2) a hospital affiliated with a Medicare certified, community-based hospice program; (3) a hospital with its own hospice program; and (4) a conventional (non-hospice) hospital. Analyses of quantitative data supported two hypotheses about significant differences between hospice and conventional care. The conventional care group demonstrated the lowest levels of basic needs satisfaction, satisfaction with the psycho-social support of the nurse, and overall program satisfaction. As predicted, overall satisfaction with care was consistent across hospice groups. However, home hospice care provided the highest quality of basic needs satisfaction and the highest level of satisfaction with the nurse. Significant Pearson correlations supported the hypothesis that overall satisfaction is negatively related to unmet basic needs (r = -0.69) and positively related to the psycho-social support received from nurses (r = 0.73).(ABSTRACT TRUNCATED AT 250 WORDS)     

Exploratory study on end-of-life issues: barriers to palliative care and advance directives

BACKGROUND: In the United States, as in most developed countries, death is rarely unexpected. It usually occurs in older persons with chronic progressive illnesses that often are complicated by infections or exacerbations. Many patients with terminal illnesses choose palliative care to relieve symptoms, improve the quality of their lives, and strive for a peaceful death. Professionals who serve dying patients need to recognize the importance of advance directives as part of a patient's decision to forgo curative treatment for palliative care. OBJECTIVES: SOLACE (Supporters of Life-Affirming Care at End of Life) is a coalition of interdisciplinary professionals in the northern Virginia community dedicated to improving end-of-life care. The objectives of the SOLACE survey were to identify and describe: 1) professionals' perceptions about barriers related to hospice and palliative care, 2) professionals' opinions about barriers related to dying at home, 3) professionals' perceptions about barriers related to advance directives, and 4) relationships between professionals and their perceived barriers to advance directives and hospice and palliative care. METHODS: From several consultations with hospice experts, a survey questionnaire was developed to solicit responses from professionals on palliative care, dying at home, and advance directives. Measures that assessed obstacles to palliative care were modified from previous studies to yield composite barrier scores. From a sample of a variety of participants at a national conference on palliative care (n = 200), 101 subjects returned questionnaires (51 percent) yielding 100 usable completed forms from attendees who demonstrated an interest in palliative care and, in some cases, a high level of personal or professional experience. Survey results were analyzed on respondents' perceptions concerning barriers related to advance directives and the delivery of palliative care. RESULTS: Of the 13 obstacle statements, results show that respondents rated the top three barriers as 1) physician reluctance to make referrals (mean = 4.23), 2) physician lack of familiarity with availability and suitability of hospice (mean = 3.93), and 3) association of hospice with death (mean = 3.93). There was a statistically significant difference in scores for respondents from hospitals and respondents from hospices on their assessment of barriers for the association of hospice with death (t = -2.09, p < .05) and the lack of information about the severity of or irreversibility of the patients illness (t = -2.78, p < .01).     

Support in a time of need. The team approach at Mercy Medical Hospice addresses medical, emotional, and spiritual needs

Mercy Medical Hospice, Daphne, AL, uses an interdisciplinary team approach, which includes medical, nursing, social work, pastoral care, pharmacy, therapies, volunteer, and bereavement services. Mercy Medical has two home care offices and offers inpatient respite care for short periods, which is helpful for those who have an inadequate care giver system or need time to work out a better alternative to care in the home. An assessment of medical and nursing care needs, mental and emotional state, and psychological and spiritual needs is the first step after patients enter hospice. The entire team develops a care plan for the patient and family. Among the issues they address are education about the disease process, medication for pain control and symptom management, and how the patient and family cope with the patient's imminent death. Working with the dying and their families can be stressful for staff members, and they offer each other a lot of support. Working in hospice requires good stress management techniques, but staff feel that it is a calling that enriches their lives.     

Place of death: analysis of cancer deaths in part of North West England

BACKGROUND: Relatively little work of a detailed geographical nature has been undertaken on the distribution of place of death. In particular, given evidence that most cancer patients would prefer to die at home there is a need to examine the extent to which this preference is met differentially from place to place. METHODS: Using data on cancer deaths for a single Health Authority in North West England we conducted both small area and individual analyses of place of death, using binomial and binary logistic regression models, respectively. RESULTS: Results from the small area analysis show that in more deprived areas cancer patients are more likely to die in hospital or hospice, and less likely to die at home, but that the effect disappears for home and hospice deaths once other factors are controlled for. At the individual level, the probability of death at home decreases among those living in deprived areas, whereas the probability of death in hospital increases as area deprivation increases. Age, gender, type of cancer, and proximity to hospital or hospice all have some effect on the probability of dying in a particular setting. CONCLUSION: There is significant place-to-place variation in place of death among cancer patients in part of North West England. However, studies of place of death among cancer patients need to consider the full range of settings and, if examining the impact of deprivation or social class, need to adjust for other factors, including proximity to different settings.     

Care of cancer patients in a home-based hospice program: a comparison of oncologists and primary care physicians.

BACKGROUND. The purpose of this study was to describe a group of patients cared for in a home-based hospice program and to determine if there was a difference in patients' experiences dependent on whether the attending physician was a primary care physician or an oncologist. METHODS. Information about cancer patients admitted to the Burlington Visiting Nurse Association (VNA) Hospice program from January 1986 to December 1990 was reviewed to compare the experiences of the patients of the oncologists with those of the patients of the primary care physicians. RESULTS. There was no difference in average length of stay or overall ambulatory status between the patient groups. The patient group cared for by oncologists had more hospitalizations than the group cared for by primary care physicians though there was not a significant difference in the percentage of hospital vs home deaths. There was a significant difference between the groups in the use of controlled-release morphine, with oncologists using this approach more often than primary care physicians. Oncologists also had more patients on continuous parenteral morphine infusions during hospice care. CONCLUSIONS. Primary care physicians as well as oncologists provide effective cancer care and pain control in this home-based hospice program. The hospice interdisciplinary team can be a valuable resource for physicians in supplying information on appropriate narcotics dosages and routes of administration for their dying patients.     

A community-wide volunteer-intensive hospice program.

Hospice of Frederick County has developed a volunteer-intensive community-model hospice program that is in many ways different from hospice programs that see themselves as a new specialty within the health care system. The intention of the program is to keep the patient and family in control of decisions and to work closely with existing health care providers selected by the family. Hospice of Frederick County believes hospice care is far more than professional health care. "The Board of Directors believes that hospice is a community concern. The compassion and caring which characterizes hospice belongs in the churches, neighborhoods, schools, workplace, service clubs...in all areas of community life. Hospice volunteers are people from the community who care so much that they are willing to receive special training and supervision to be friends to the dying, their families and their loved ones".     

The effect of inpatient hospice units on hospice use post-admission

The objective of this study was to determine whether having a hospice unit within the hospital increases the proportion of terminally ill patients who use hospice services (including home, nursing home, or inpatient hospice) post-admission. Using medical record data abstracted for 232 randomly selected patients with terminal cancer admitted to six community hospitals in Connecticut, we found that patients admitted to a hospital with a hospice unit were more likely to use hospice services (i.e., home hospice, nursing home hospice, or inpatient hospice) post-admission than patients admitted to a hospital without a hospice unit (unadjusted OR 5.7, 95% CI 3.1, 10.6). This effect persisted after adjusting for patient age, gender, marital status, documented discussions of prognosis, prior hospice use, and type of cancer.