Access to palliative care and hospice in nursing homes

Nursing homes are the site of death for many elderly patients with incurable chronic illness, yet dying nursing home residents have limited access to palliative care and hospice. The probability that a nursing home will be the site of death increased from 18.7% in 1986 to 20.0% by 1993. Dying residents experience high rates of untreated pain and other symptoms. They and their family members are isolated from social and spiritual support. Hospice improves end-of-life care for dying nursing home residents by improving pain control, reducing hospitalization, and reducing use of tube feeding, but it is rarely used. For example, in 1997 only 13% of hospice enrollees were in nursing homes while 87% were in private homes, and 70% of nursing homes had no hospice patients. Hospice use varies by region, and rates of use are associated with nursing home administrators' attitudes toward hospice and contractual obligations. Current health policy discourages use of palliative care and hospice for dying nursing home residents. Quality standards and reimbursement rules provide incentives for restorative care and technologically intensive treatments rather than labor-intensive palliative care. Reimbursement incentives, contractual requirements, and concerns about health care fraud also limit its use. Changes in health policy, quality standards, and reimbursement incentives are essential to improve access to palliative care and hospice for dying nursing home residents. JAMA. 2000;284:2489-2494.     

Place of death in South Australia. Patterns from 1910 to 1987

OBJECTIVES: To portray the changes in the place of death of South Australians during the 20th century and to examine the effects of sociodemographic and cause of death variables. DESIGN: Data relating to 2566 deaths from 1910 to 1987 were extracted from the records of funeral directors. A comparison of our sample of deaths with State mortality statistics, in terms of age, sex and diagnosis, was made to assure the representativeness of the sample. RESULTS: The proportion of deaths which occurred at home decreased from 55.6% in 1910 to 26.2% in 1970, and thereafter about a quarter of all deaths occurred at home. Most of the "institutionalisation of death" was due to increasing proportions of deaths in public hospitals; by 1970 over two-thirds of all deaths occurred in hospitals. After 1970 death has been transferred from hospitals to nursing homes and inpatient hospices. Multivariate analyses indicated that the institutionalisation trend was present after taking account of confounders (age, sex, marital status, occupation, number of children, and cause of death). CONCLUSIONS: Mortality patterns are determined by social and demographic characteristics of those who die, the availability of hospital and nursing home beds, changes to health insurance schemes, and the emergence of hospice care and related services. Further study is required to determine whether patterns of terminal care are cost-effective and medically appropriate.     

Where patients with cancer die in South Australia, 1990-1999: a population-based review.

OBJECTIVE: To determine the place of death of South Australians who die of cancer. DESIGN: A population-based, cross-sectional study of data from the South Australian Cancer Registry. PARTICIPANTS: 29,230 patients with cancer dying in 1990-1999. MAIN OUTCOME MEASURES: Place of death; patient demography; year of death; survival from diagnosis; and type of cancer. RESULTS: 25.0% of patients died in a metropolitan public hospital, 19.9% in a hospice, 16.9% in a country hospital, 15.8% at a private residence, 12.7% in a metropolitan private hospital, and 9.7% in a nursing home. Although the change in place of death was not marked, multivariate logistic regression showed a secular trend away from metropolitan public hospitals towards metropolitan private hospitals and, in 1998-1999, towards nursing homes. Patients dying of cancer in a metropolitan public hospital were more likely to be younger, males, born outside Australia, and residents of lower socioeconomic areas of Adelaide. They were also more likely to have died within three months of diagnosis, and to have a haematological malignancy or a cancer of the upper digestive tract, lung or female breast. In contrast, patients dying at a private residence tended to be under 70 years and comprise longer-term survivors. Country residents were less likely than Adelaide residents to die in a hospice. CONCLUSION: The proportion of patients dying in different settings have health service implications. The relatively low use of hospice facilities by country patients may reflect differences in access to hospice facilities.     

Where patients with cancer die in South Australia

In a sample of 1582 deaths among South Australian patients with cancer (795 deaths in 1981 and 787 deaths in 1985), 67% of deaths occurred in a hospital, 9% of deaths in a hospice, 10% of deaths in a nursing home, and 14% of deaths in a private residence. More patients died in a hospice or nursing home in 1985 than in 1981, and fewer died in a hospital. With increasing age, fewer patients died in a hospital and more in a nursing home. Compared with men, women were less likely to die at a private residence and more likely to die in a nursing home. A greater proportion of men with a living wife died at a private residence than was so among single or widowed men. However, conjugal status was not associated with the place of death of women. Patients who lived in the more affluent metropolitan suburbs tended more to die at a private residence than did those from poorer suburbs or country areas. Patients with haematological malignancies died in major metropolitan public hospitals more frequently than did patients with other tumours. Possible explanations are given for these findings.     

Factors associated with location of death (home or hospital) of patients referred to a palliative care team.

OBJECTIVE: To identify factors associated with the location of death (home or hospital) of patients referred to a palliative care home support team. DESIGN: Retrospective case-control chart review. SETTING: Palliative care inpatient unit with a home support team in a large chronic care hospital. SUBJECTS: All 75 patients receiving services from the home support team who died at home between June 1988 and January 1990 and 75 randomly selected patients receiving the same services who died in hospital. OUTCOME MEASURES: Place of death (home or hospital). RESULTS: Of the 267 patients referred to the palliative care home support team during the study period 75 (28.1%) died at home. Factors significantly associated with dying at home were the patient's preference for dying at home recorded at the time of the initial assessment (p < 0.001), a family member other than the spouse involved in the patient's care (p = 0.021) and the use of private shift nursing (p < 0.001). The patients who died in hospital were more likely than the other patients to have had no home visits from the palliative care team after the initial assessment (p = 0.04). The patient's preference for dying at home was not met if the caregiver could not cope or if symptoms were uncontrolled. The patient's preference for dying in hospital was not met if his or her condition deteriorated rapidly or if the patient died suddenly. CONCLUSIONS: Patients' preference as to place of death, level of caregiver support and entitlement to private shift nursing were significantly associated with patients' dying at home. The determination of these factors should be part of every palliative care assessment. Patients and their families should be informed about available home support services.     

Impact on nursing home staff of training about death and dying

The aim of the study was to test an educational program for nursing home personnel concerning working with dying patients. Ten community nursing homes were randomly assigned to experimental (training) or control (no training) conditions. Staff members in all homes were pretested on their anxieties about death, attitudes, knowledge, and skill in working with the dying. After training, experimental staff members (N = 296) had more fear of their own deaths and less fear of the dying of others than control subjects (N = 290). Also, trained staff had better attitudes toward caring for the dying patient and dealing with the family, as well as improved knowledge and skill. Data support the value of training, even though sessions may temporarily increase anxiety of staff members about their own deaths.     

Family perspectives on end-of-life care at the last place of care

Context  Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home. Objective  To evaluate the US dying experience at home and in institutional settings. Design, Setting, and Participants  Mortality follow-back survey of family members or other knowledgeable informants representing 1578 decedents, with a 2-stage probability sample used to estimate end-of-life care outcomes for 1.97 million deaths from chronic illness in the United States in 2000. Informants were asked via telephone about the patient's experience at the last place of care at which the patient spent more than 48 hours. Main Outcome Measures  Patient- and family-centered end-of-life care outcomes, including whether health care workers (1) provided the desired physical comfort and emotional support to the dying person, (2) supported shared decision making, (3) treated the dying person with respect, (4) attended to the emotional needs of the family, and (5) provided coordinated care. Results  For 1059 of 1578 decedents (67.1%), the last place of care was an institution. Of 519 (32.9%) patients dying at home represented by this sample, 198 (38.2%) did not receive nursing services; 65 (12.5%) had home nursing services, and 256 (49.3%) had home hospice services. About one quarter of all patients with pain or dyspnea did not receive adequate treatment, and one quarter reported concerns with physician communication. More than one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or 1 or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services. Nursing home residents were less likely than those cared for in a hospital or by home hospice services to always have been treated with respect at the end of life (68.2% vs 79.6% and 96.2%, respectively). Family members of patients receiving hospice services were more satisfied with overall quality of care: 70.7% rated care as "excellent" compared with less than 50% of those dying in an institutional setting or with home health services (P<.001). Conclusions  Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.      

The impact of Medicare's prospective payment system on Wisconsin nursing homes

To assess the impact of Medicare's prospective payment system (PPS) on nursing homes, we reviewed hospitalization and mortality data for Wisconsin's Medicaid and general elderly populations. During the 12 months following implementation of the PPS, Wisconsin's institutionalized elderly Medicaid population experienced a 72% increase in the rate of hospitalization and a 26% decline in hospital length of stay. Two explanations for the increased hospitalization include physician manipulation of the PPS and increased rehospitalization of nursing home residents who may have been discharged prematurely from hospitals. Between 1982 and 1985, analysis of mortality data revealed a 26.2% increase in the rate of deaths occurring in nursing homes. The increase in nursing home deaths began in 1983 and was associated with a 10.3% decline in hospital deaths during the same period. Using a series of logistic analyses, the shift in location of death from hospitals to nursing homes was found to be more pronounced after implementation of the PPS. This change in location of death may reflect both a less aggressive use of hospital resources by physicians caring for terminally ill patients and a transfer of seriously ill patients to nursing homes for terminal care.     

Using verbal autopsy to identify and proportionally assign cause of death in Ibadan, southwest Nigeria

Reliable and accurate data remain scarce on the cause and rates of mortality among adults in sub-Saharan Africa. The Idikan Adult Mortality Study, a prospective community-based study was initiated in order to obtain the overall as well as cause-specific mortality data for a community of adults (15 years and above). Standardised verbal autopsy questionnaire was used to investigate and assign the mode and cause of death. There were 232 reported deaths in the baseline population of 4127 adults over 5 years, giving an unadjusted death rate of 11.2 per 1000 per year. Thirty-nine (16.8% ) of these death occurred suddenly. The commonest known cause of death was due to cardiovascular disease, which was responsible for 43 (18.5% ) of all deaths. It was also the commonest known cause of sudden death accounting for 30.8% of such deaths. Infection was responsible for 28 (12.1% ) deaths while injury accounted for 7 (2.6% ) deaths. Subjects, 50 years and above were more likely to die and also die suddenly than were the younger subject (p<0.0001, p<0.0001) and significantly more death occurred in males than females (6.9% versus 4.7% ) (P<0.01). Deaths were also more likely to have occurred at home and outside the hospital, increasing the probability of these deaths being underreported. Following multivariate logistic regression analysis, respondents between the age of 20 -49 years had significantly reduced risk of dying (p=0.029), while cigarette smoking significantly increased the risk of dying (p=0.012). In the absence of the urgently needed vital statistics, use of verbal autopsies is a potentially useful investigative method for identifying and assigning cause of adult deaths in a community.     

Randomised controlled trial of health assessments for older Australian veterans and war widows

OBJECTIVE: To assess the effect of home-based health assessments for older Australians on health-related quality of life, hospital and nursing home admissions, and death. DESIGN: Randomised controlled trial of the effect of health assessments over 3 years. PARTICIPANTS AND SETTING: 1569 community-living veterans and war widows receiving full benefits from the Department of Veterans' Affairs and aged 70 years or over were randomly selected in 1997 from 10 regions of New South Wales and Queensland and randomly allocated to receive either usual care (n = 627) or health assessments (n = 942). INTERVENTION: Annual or 6-monthly home-based health assessments by health professionals, with telephone follow-up, and written report to a nominated general practitioner. MAIN OUTCOME MEASURES: Differences in health-related quality of life, admission to hospital and nursing home, and death over 3 years of follow-up. RESULTS: 3-year follow-up interviews were conducted for 1031 participants. Intervention-group participants who remained in the study reported higher quality of life than control-group participants (difference in Physical Component Summary score, 0.90; 95% CI, 0.05-1.76; difference in Mental Component Summary score, 1.36; 95% CI, 0.40-2.32). There was no significant difference in the probability of hospital admission or death between intervention and control groups over the study period. Significantly more participants in the intervention group were admitted to nursing homes compared with the control group (30 v 7; P < 0.01). CONCLUSIONS: Health assessments for older people may have small positive effects on quality of life for those who remain resident in the community, but do not prevent deaths. Assessments may increase the probability of nursing-home placement.     

Diarrheal deaths in the United States, 1979 through 1987. A special problem for the elderly

OBJECTIVE.--Diarrhea is an important cause of death among young children in both developing and developed countries, but little is known about diarrheal death among adults. In this study, we examined trends in diarrheal deaths among all age groups in the United States. DESIGN/SETTING/PARTICIPANTS.--We reviewed national mortality data complied by the National Center for Health Statistics, Hyattsville, Md, which consists of information from all death certificates filed in the United States for the period 1979 through 1987. A death for which diarrhea was listed as an immediate or underlying cause was considered a "diarrheal death" and included in the analysis. RESULTS.--We found that 28,538 persons died of diarrhea cited as either an immediate or the underlying cause of death during the 9-year period. A majority of diarrheal deaths occurred among the elderly (older than 74 years of age, 51%), followed by adults 55 to 74 years of age (27%), and young children (younger than 5 years of age, 11%). For the elderly, adjusted risk factors for dying of diarrhea included being white, female, and residing in a long-term care facility. Only the elderly and young children had clear, distinct winter peaks of diarrheal deaths, suggesting that the diarrhea may, in part, be infectious in origin. CONCLUSION.--For the elderly, more directed studies of those at risk, such as nursing home residents, are needed to determine if oral rehydration therapy, vaccines, or other preventive measures might benefit this population.     

An enquiry into death and dying at the Adelaide Children's Hospital: a useful model?

As a result of a desire amongst the hospital staff to improve the management of dying children and their families, a four person subcommittee was appointed to investigate this area of care. Nineteen persons were interviewed (15 hospital staff members and four parents) and 12 written submissions were received (10 from staff and two from parents) over a 10 week period. An analysis of one year's deaths of Adelaide Children's Hospital patients showed that most took place in the hospital and about one in five were at home. Nearly 60% occurred in children aged 0-5 years, 15% in those aged 6-10 years, 15% in those aged 11-15 years, and 13% in children aged more than 15 years. The four commonest causes of death were: cancer (27%), congenital abnormalities (19%), sudden infant death syndrome (SIDS) (16%), and trauma (11%). Sudden unexpected deaths are most common, particularly for infants. Recommendations included improved privacy for families and friends; more sensitive body viewing, mortuary, autopsy and funeral arrangements; and better in-service education for staff and information giving for families. Areas of insufficient staff support were identified and the appointment of a specialist palliative care clinical nurse consultant was proposed. Stronger links with palliative and hospice care teams, general practitioners and community nurses were suggested. Addressing the issues of living and dying, and working through the stages of grief are integral parts of long term clinical care. The need for good continuity of psychosocial support was a recurring theme. More awareness of the availability of the specialised pain relief service was required. Ethical issues should be addressed as part of the general development of education and information services. The advantages and limitations of the enquiry are discussed and the model is proposed as a potentially useful one for both paediatric and adult palliative care and hospice care service development.     

医护本科学生对待死亡及临终关怀态度的调查

目的 了解医科大学护理及医疗专业学生对待死亡及临终关怀的态度。方法 对某医科大学护理、临床医学、口腔医学专业的349名本科医学生进行对待死亡及临终关怀态度的问卷调查。结果 医护本科学生对待个人、患者死亡及濒死的态度，以及对医院临终关怀现状认识均不如医护工作人员积极，但有着更为积极临终关怀照护的态度；21．6％学生认为自己了解临终关怀学，88％学生觉得自己有必要学习临终关怀知识。结论 医学生对待死亡及临终关怀态度应进一步加强，对临终关怀教育是必要可行的。     

老年公寓老年人死亡原因分析

目的:调查分析入住老年公寓的老年人死亡的主要原因,促进社会化养老的发展。方法:对2008年1月至2011年12月入住我院老年公寓老年人用自制一般情况调查表、《日常生活能力量表》(ADL)进行调查,对死亡前的表现及导致死亡的主要原因进行统计分析。结果:死亡组:平均年龄(79.97±6.79)岁,较总体平均年龄无明显差异;ADL评分明显增高,为(45.00±10.32)分。导致死亡的主要原因是:多脏器功能衰竭(19例)、心力衰竭(9例)、癌症(4例)、猝死(3例)。慢性衰竭患者濒死的主要表现是:四肢皮肤湿冷、腕处脉搏上移、额纹舒展、潮式呼吸等。结论:入住我院老年公寓的老年人患病种类多,主要死亡原因是各种疾病导致的脏器(特别是心脏)功能衰竭,应加强养老机构的医疗服务(特别是抢救)能力。     

Incidence of nursing home placement in a defined community

OBJECTIVE: To assess cumulative incidence and non-cognitive factors predicting nursing home placement in a defined older population. DESIGN AND SETTING: Six-year follow-up of a population-based cohort living west of Sydney. PARTICIPANTS: 3654 non-institutionalised residents aged 49 years or older (82.4% of those eligible) participated in baseline examinations during 1992 to 1994. MAIN OUTCOME MEASURES: Permanent nursing home admission for long-term institutionalised aged care in New South Wales, confirmed by records of approvals by the regional Aged Care Assessment Team and subsidy payments by government. RESULTS: After excluding 384 participants who moved from the area or were lost to follow-up, 162 participants (5.0%) had been admitted to nursing homes on a permanent basis by October 1999. Of participants who died since baseline, 20% had been admitted to a nursing home before death. Of those alive, 1.6% were current nursing home residents. Six-year cumulative incidence rates for nursing home placement were 0.7%, 1.1%, 2.4%, 3.9%, 9.0%, 18.3% and 34.9% for people aged 55-59, 60-64, 65-69, 70-74, 75-79, 80-84 and 85 years or older, respectively. Non-cognitive factors at baseline predicting subsequent nursing home admission included each additional year of age (risk ratio [RR], 1.14), fair or poor compared with excellent self-rated health (RR, 2.9, 3.6), walking difficulty (RR, 3.6) and current smoking (RR, 1.9). People owning their homes had a decreased likelihood of nursing home placement (RR, 0.6). CONCLUSIONS: Incidence rates of institutional aged care doubled for each five-year interval from the age of 60 years. A range of non-cognitive factors predict nursing home placement.     

Reactivation of herpes zoster (shingles) infection associated with an increased risk of death in immunocompetent older persons

OBJECTIVES: To determine whether cutaneous herpes zoster infection in immunocompetent older people is correlated with an increased risk for death. SETTING: Primary care clinics associated with West Virginia University, Morgantown West Virginia. DESIGN: Case-control study PARTICIPANTS: Immunocompetent outpatients born from 1903 through 1931, seen from 1994 through 2001; 102 patients diagnosed with herpes zoster (HZV) infection and 201 controls. The median age of both groups was 75 and the sample size was approximately 5,000. MEASUREMENTS: Three-year mortality, risk, and age of death after first clinic visit for herpes zoster. RESULTS: Fourteen deaths occurred in the control group with a mean age of death of 83.4 and 26 deaths among the subjects with HZV with a mean age of death of 79.6. This age difference was not statistically significant, however the age adjusted risk of dying in three years after reactivation of HZV was 4.9 times the adjusted odds of dying without HZV, controlling for age. (95% confidence intervals for the ratio of adjusted odds: 2.4-10.44) CONCLUSION: In this study reactivation of herpes zoster infection was associated with an increased risk for death in the three years following an infection; deaths were not directly correlated with such an infection, but occurred for various other reasons. This suggests that herpes zoster infections may be a marker for early mortality.     

Home versus hospital death: assessment of preferences and clinical challenges.

In Canada hospital beds have been reduced in number, and there is increased fiscal pressure for patients with advanced terminal illness to be cared for in their own homes until death. In this issue (see pages 361 to 367) Drs. Ian R. McWhinney and Martin J. Bass and Ms. Vanessa Orr report that people who die at home rather than in hospital are more likely to be cared for by family members other than a spouse and to have the services of a private duty nurse. The literature has shown that health problems of elderly spouses, occupational and other responsibilities of family members, and the physical, psychologic and financial strain of providing home care can make it difficult to honour a terminally ill person's wish to die at home. The findings of McWhinney and colleagues point to the existence of a two-tiered health care system in which those who have access to private duty nursing are able to stay at home to die. Their study also raises three key questions that must be addressed in the assessment of patient preferences as to place of death: Should family members be included in the assessment? How should preferences be measured? and What is an appropriate time frame for such an assessment? Although McWhinney and colleagues identify characteristics of care associated with place of death and underline the need for careful assessment of patient preferences regarding place of death, further research is needed to build on these findings. In the current context of health care reform, we need to examine more closely the type and intensity of services needed to support patients and their families in the final stages of a terminal illness.     

癌症临终患者家属死亡态度调查与分析

目的 了解癌症临终患者家属的死亡态度及影响因素,为提高癌症患者临终关怀服务质量、开展死亡教育提供依据,积累资料。方法 选取2012年9月～2013年12月入住华泾镇社区卫生服务中心106名癌症临终患者的家属为研究对象,采用死亡态度调查问卷进行调查,并分析结果。结果 78名研究对象对死亡持接受态度,28名持排斥态度。文化程度、接触死亡及濒死情况、参加葬礼次数及在家中谈论死亡情形对其死亡态度均有影响（P＜0.05或P＜0.01）。结论 死亡态度受多种因素的影响,护理人员在实施癌症临终关怀护理时,应注重对患者家属的死亡教育的方式。     

Private nursing homes: contribution to long stay care of the elderly in the Brighton Health District

Two surveys of private nursing homes, designated geriatric wards, and a sample of social service part III homes were carried out in the Brighton Health District using questionnaires supplemented (in the second survey) by some interviews. The dependency of old people in the private nursing homes was more like that of long stay hospital patients rather than that of residents in social services homes. In the private nursing homes, however, a smaller proportion of patients were in the medium to heavy nursing category (178 (31%) compared with 158 (63%) in the hospital long stay wards) and a larger proportion in the heavy nursing category (170 (30%) compared with 44 (17%) in the long stay wards). Of the patients in private nursing homes, 401 (82%) were local residents, 488 (86%) were long stay, and 459 (88%) were women; their mean age was 88 years. Two thirds of the patients were over 80. There were no significant differences between the private nursing homes and the wards in nursing workloads or staffing, except for a slightly higher provision of state registered nurses in the private sector. In the private nursing homes 348 (63%) of the patients had fees paid by private funds, 26 (5%) were in contract beds paid for by the National Health Service, and 176 (32%) were subsidized by the Department of Health and Social Security. Private nursing homes make a substantial contribution to the care of the elderly in the Brighton Health District, and the health authority should develop a more active partnership with this sector.