Is Hospice Associated with Improved End‐of‐Life Care in Nursing Homes and Assisted Living Facilities?

OBJECTIVES: To examine whether hospice enrollment for nursing home (NH) and residential care/assisted living (RC/AL) residents near the end of life is associated with symptoms and symptom management, personal care, spiritual support, and family satisfaction. DESIGN: Structured, retrospective telephone interviews with family and staff who attended to NH and RC/AL residents in the last month of life. SETTING: A stratified sample of 26 NH and 55 RC/AL facilities in four states. Participants: Family members (n=97) and long-term care (LTC) staff (n=104) identified as most involved in care of 124 residents who died over a 15-month period. MEASUREMENTS: A variety of reported measures of care and symptoms before death, including the Discomfort Scale for Dementia of the Alzheimer's Type. RESULTS: Of 124 decedents, 27 (22%) received hospice services. Dementia was less common in hospice enrollees than in decedents who did not receive hospice care. Hospice enrollees more often had moderate/severe pain and dyspnea and received pain treatment and were more likely to receive assistance with mouth care and eating and drinking. There were no differences related to unmet need, and observed differences were largely eliminated when comparisons were limited to residents whose deaths were expected. CONCLUSION: Rates of hospice use observed in this study (22%) were considerably higher than previously reported, although persons with dementia may continue to be underreferred. Hospice use is targeted to dying residents with higher levels of reported pain and dyspnea. Because difference in care largely disappears in cases when death was expected, LTC staff seem to be well positioned to provide end-of-life care for their residents and are advised to remain sensitive to instances in which death may be expected.     

Hospice enrollment and hospitalization of dying nursing home patients.

PURPOSE: This study's purpose was to evaluate whether Medicare hospice care provided in nursing homes is associated with lower hospitalization rates. SUBJECTS AND METHODS: This retrospective cohort study included nursing home residents in five states who enrolled in hospice between 1992 and 1996 (n = 9202), and who died before 1998. For each hospice patient, 3 nonhospice residents (2 in 106 instances) were chosen (n = 27,500). Medicare claims identified hospice enrollment and acute care hospitalizations. RESULTS: Twenty-four percent of hospice and 44% of nonhospice residents were hospitalized in the last 30 days of life. Adjusting for confounders, hospice patients were less likely than nonhospice residents to be hospitalized (odds ratio 0.43; 95% confidence interval [CI]: 0.39 to 0.46). Considering all of nonhospice residents who died (n = 226,469), those in facilities with no hospice had a 47% hospitalization rate, whereas rates were 41% in facilities with low hospice use and 39% in facilities with moderate hospice use (5%+ of patients in hospice). Hospitalization was less likely for nonhospice residents in facilities with low hospice use (odds ratio 0.82; 95% CI: 0.80 to 0.84) and moderate hospice use (odds ratio 0.71; 95% CI: 0.69 to 0.74), compared with those in facilities with no hospice. CONCLUSIONS: When integrated into the nursing home care processes, hospice care is associated with less hospitalization for Medicare hospice patients. Additionally, possibly through diffusion of palliative care philosophy and practices, nonhospice residents who died in nursing homes having a hospice presence had lower rates of end-of-life hospitalizations.     

Does Hospice Improve Quality of Care for Persons Dying from Dementia?

OBJECTIVES: To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members. DESIGN: Mortality follow‐back survey. SETTING: Death certificates were drawn from five states (AL, FL, TX, MA, and MN). PARTICIPANTS: Bereaved family members listed as the next of kin on death certificates when dementia was listed as the cause of death. MEASUREMENTS: Ratings of the quality of end‐of‐life care, perceptions of unmet needs, and opportunities to improve end‐of‐life care. Two questions were also asked about the peacefulness of dying and quality of dying. RESULTS: Of 538 respondents, 260 (48.3%) received hospice services. Family members of decedents who received hospice services reported fewer unmet needs and concerns with quality of care (adjusted odds ratio (AOR)=0.49, 95% confidence interval (CI)=0.33–0.74) and a higher rating of the quality of care (AOR=2.0, 95% CI=1.53–2.72). They also noted better quality of dying than those without hospice services. CONCLUSION: Bereaved family members of people with dementia who received hospice reported higher perceptions of the quality of care and quality of dying.     

Physicians "missing in action": family perspectives on physician and staffing problems in end-of-life care in the nursing home

OBJECTIVES: To understand the roles of physicians and staff in nursing homes in relation to end-of-life care through narrative interviews with family members close to a decedent. DESIGN: Qualitative follow-up interviews with 54 respondents who had participated in an earlier national survey of 1,578 informants. SETTING: Brown University interviewers conducted telephone interviews with participants throughout the United States. PARTICIPANTS: The 54 participants agreed to a follow-up qualitative interview and were family members or close to the decedent. MEASUREMENTS: A five-member, multidisciplinary team to identify overarching themes taped, transcribed, and then coded interviews. RESULTS: Respondents report that healthcare professionals often insufficiently address the needs of dying patients in nursing homes and that "missing in action" physicians and insufficient staffing create extra burdens on dying nursing home residents and their families. CONCLUSION: Sustained efforts to increase the presence of physicians and improve staffing in nursing homes are suggested to improve end-of-life care for dying residents in nursing homes.     

Use of proxy respondents and accuracy of minimum data set assessments of activities of daily living

BACKGROUND: Although the Minimum Data Set (MDS) presents a wide range of opportunities for policy makers and practitioners interested in outcomes of nursing home care for frail elderly persons, researchers have debated the validity and reliability of measurements in the MDS from the outset. To investigate this issue, the authors studied the accuracy of functional assessments by comparing the MDS and interview data collected in two evaluation studies. METHODS: Activities of daily living (ADL) assessment data from 3385 nursing home residents were collected from interviews with nursing home residents (n = 1200), family members (n = 1070), and nursing home staff (n = 1115). The MDS data for these nursing home residents were obtained and matched with the interview data. The agreement in ADL assessments between interview data and the MDS was assessed using Kappa statistics and multinomial logit regression for each of the three data sources. RESULTS: The agreement on ADL assessments between MDS and interview data was low to moderate (Kappa = 0.25 to 0.52), regardless of the sources of data. Interview data from staff and family proxies agreed to a greater degree with the MDS than did data collected from nursing home residents. The MDS reported fewer ADL difficulties than did staff proxies and more ADL difficulties than did nursing home residents. These findings held even after adjustment for other confounding factors using multinomial logit regression. CONCLUSIONS: The substantial discrepancy between MDS and interview data can be attributed to both bias and error. The ADL assessments based on residents' and family or staff reports differ, but the size of these differences depends on the proxy type and the method of data collection.     

Advance care planning and end-of-life care for hospitalized nursing home residents

OBJECTIVES: To describe advance care planning (ACP) and end-of-life care for nursing home residents who are hospitalized in the last 6 weeks of life. DESIGN: Constant comparative analysis of deceased nursing home resident cases.SETTING: A not-for-profit Jewish nursing home. PARTICIPANTS: Forty-three deceased residents hospitalized within the last 6 weeks of life at a tertiary medical center. MEASUREMENTS: Trained nurse reviewers abstracted data from nursing home records and gerontological advanced practice nurse field notes. Clinical and outcome data from the original study were used to describe the sample. Data were analyzed using the constant comparative method and validated in interviews with a gerontological advanced practice nurse and social worker. RESULTS: The analysis revealed distinct characteristics and identifiable transition points in ACP and end-of-life care with frail nursing home residents. ACP was addressed by social workers as part of the nursing home admission process, focused primarily on cardiopulmonary resuscitation preference, and reviewed only after the crisis of acute illness and hospitalization. Advance directive forms specifying preferences or limitations for life-sustaining treatment contained inconsistent language and vague conditions for implementation. ACP review generally resulted in gradual limitation of life-sustaining treatment. Transition points included nursing home admission, acute illness or hospitalization, and decline toward death. Relatively few nursing home residents received hospice services, with most hospice referrals and palliative care treatment delayed until the week before death. Most residents in this sample died without family present and with little documented evidence of pain or symptom management. CONCLUSION: Limiting discussion of advance care plans to cardiopulmonary resuscitation falsely dichotomized and oversimplified the choices about medical treatment and care at end-of-life, especially palliative care alternatives, for these older nursing home residents. Formal hospice services were underutilized, and palliative care efforts by nursing home staff were often inconsistent with accepted standards. These results reinforce the need for research and program initiatives in long-term care to improve and facilitate individualized ACP and palliative care at end of life.     

Partners in caregiving in a special care environment: cooperative communication between staff and families on dementia units

PURPOSE: This article reports the results of a randomized, controlled evaluation of Partners in Caregiving in a Special Care Environment, an intervention designed to improve communication and cooperation between staff and families of residents in nursing home dementia programs. DESIGN AND METHODS: Participants included 388 family members and 384 nursing staff members recruited from 20 nursing homes, randomly assigned to treatment and control conditions. Project staff conducted training sessions on communication and conflict-resolution techniques with two groups at the intervention sites: staff and residents' family members, followed by a joint meeting with facility administrators. RESULTS: Families, staff, residents, and facility programs in the intervention facilities all demonstrated positive outcomes from program participation. Families experienced significant improvement in communicating with staff and in staff behaviors toward them, and spouses of residents increased their care involvement. Staff reported reduced conflict with families and reduced depression; burnout for nurses increased for individuals in the control group but not those in the treatment group. Behavioral symptoms decreased for residents, and facilities implemented more family-focused programs. IMPLICATIONS: Effective staff and family partnerships are critical in caring for residents with dementia. The Partners in Caregiving in a Special Care Environment program is an evidence-based intervention that enables these partnerships to develop and thrive, translating into improved experiences for residents, families, and staff.     

Does hospice have a role in nursing home care at the end of life?

OBJECTIVES: To assess the possible benefits and challenges of hospice involvement in nursing home care by comparing the survival and needs for palliative care of hospice patients in long-term care facilities with those living in the community. DESIGN: Retrospective review of computerized clinical care records. SETTING: A metropolitan nonprofit hospice. PARTICIPANTS: The records of 1,692 patients were searched, and 1,142 patients age 65 and older were identified. Of these, 167 lived in nursing homes and 975 lived in the community. MEASUREMENTS: Patient characteristics, needs for palliative care, and survival. RESULTS: At the time of enrollment, nursing home residents were more likely to have a Do Not Resuscitate order (90% vs 73%; P < .001) and a durable power of attorney for health care (22% vs 10%; P < .001) than were those living in the community. Nursing home residents also had different admitting diagnoses, most notably a lower prevalence of cancer (44% vs 74%; P < .032). Several needs for palliative care were less common among nursing home residents, including constipation (1% vs 5%; P = .02), pain (25% vs 41%; P < .001), and anticipatory grief (1% vs 9%; P < .001). Overall, nursing home residents had fewer needs for care (median 0, range 0-3 vs median 1, range 0-5; rank sum test P < .001). Nursing home residents had a significantly shorter survival (median 11 vs 19 days; log rank test of survivor functions P < .001) and were less likely to withdraw from hospice voluntarily (8% vs 14%; P = .03). However, there was no difference in the likelihood of becoming ineligible during hospice enrollment (6% for both groups). CONCLUSIONS: These results suggest that hospices identify needs for palliative care in a substantial proportion of nursing home residents who are referred to hospice, although nursing home residents may have fewer identifiable needs for care than do community-dwelling older people. However, the finding that nursing home residents' survival is shorter may be of concern to hospices that are considering partnerships with nursing homes. An increased emphasis on hospice care in nursing homes should be accompanied by targeted educational efforts to encourage early referral.     

What do family members notice following an intervention to improve mobility and incontinence care for nursing home residents? An analysis of open-ended comments

PURPOSE: The purpose of this study was to evaluate the sensitivity of family members' responses to open-ended interview questions about an intervention to improve incontinence and mobility care for their relative in a nursing home. DESIGN AND METHODS: The study was a randomized, controlled intervention trial with incontinent nursing home residents (N = 145), wherein research staff provided toileting and walking assistance of sufficient intensity to significantly improve continence and mobility outcomes in the treatment group. Interviewers posed open-ended interview questions to family members after 8 weeks of intervention to assess if they noticed a difference in care. RESULTS: Family responses to open-ended questions showed that, compared to the control group, the intervention group noticed significant overall improvement in incontinence and mobility care and in residents' outcomes in mobility. IMPLICATIONS: Families' responses to open-ended questions were sensitive to improvements in incontinence and mobility care and may provide evidence for important care quality differences that would be missed if only direct satisfaction and discrepancy-based closed-ended questions were asked.     

Symptom experience of dying long-term care residents

OBJECTIVES: To describe the end-of-life symptoms of nursing home (NH) and residential care/assisted living (RC/AL) residents, compare staff and family symptom ratings, and compare how staff assess pain and dyspnea for cognitively impaired and cognitively intact residents.
DESIGN: After-death interviews.
SETTING: Stratified random sample of 230 long-term care facilities in four states.
PARTICIPANTS: Staff (n=674) and family (n=446) caregivers for dying residents.
MEASUREMENTS: Interview items measured frequency and severity of physical symptoms, effectiveness of treatment, recommendations to improve care, and staff report of assessment.
RESULTS: Decedents' median age was 85, 89% were white, and 77% were cognitively impaired. In their last month of life, 47% had pain, 48% dyspnea, 90% problems with cleanliness, and 72% symptoms affecting intake. Problems with cleanliness, intake, and overall symptom burden were worse for decedents in NHs than for those in RC/AL. Treatment for pain and dyspnea was rated very effective for only half of decedents. For a subset of residents with both staff and family interviews (n=331), overall ratings of care were similar, although agreement in paired analyses was modest (kappa=−0.043–0.425). Staff relied on nonverbal expressions to assess dyspnea but not pain. Both groups of caregivers recommended improved application of treatment and increased staffing to improve care.
CONCLUSION: In NHs and RC/AL, dying residents have high rates of physical symptoms and need for more-effective palliation of symptoms near the end of life.     

Hospice care for patients with advanced lung disease.

Hospices are organized programs of support services for patients in the advanced stages of a terminal illness and their families. Although hospices serve dying patients regardless of diagnosis, limited available evidence suggests that these programs are relatively underutilized by patients dying of nonmalignant lung diseases. One explanation may be a lower awareness of hospice eligibility criteria and services among pulmonologists than oncologists. The unpredictability of death from advanced lung disease is another likely reason. Certain limitations on federal and private insurance coverage for patients with advanced lung disease probably contribute as well. For those patients who do enroll, hospice offers expert palliation of physical, psychological, social, and spiritual distress, as well as practical support for home care needs, hospitalization for short-term control of symptoms, and inpatient respite care for relief of home caregivers. Hospice workers view dying as an active phase of life filled with the pursuit of goals that patients and family members wish to complete before or shortly after the end of life. This article reviews hospice care in the United States with particular attention to eligibility criteria and services available for patients who are dying of an advanced lung disease. Specific recommendations are offered for referring respiratory disease patients to hospice programs.     

Association between advance directives and quality of end-of-life care: a national study

OBJECTIVES: To examine the role of advance directives (ADs) 10 years after the Patient Self-Determination Act. DESIGN: Mortality follow-back survey. SETTING: People who died in a nursing home, hospital, or at home. PARTICIPANTS: Bereaved family member or other knowledgeable informant. MEASUREMENTS: Telephone interviewers that asked about the use of written ADs, use of life-sustaining treatment, and quality of care by asking whether staff provided desired symptom relief, treated the dying with respect, supported shared decision-making, coordinated care, and provided family with the needed information and emotional support. RESULTS: Of the 1,587 people who died, 70.8% had an AD. Persons who died at home with hospice or in a nursing home were more likely to have an AD. In addition, those with an AD were less likely to have a feeding tube (17% vs 27%) or use a respirator in the last month of life (11.8% vs 22.0%). Bereaved family members who reported that the decedent did not have an AD were more likely to report concerns with physician communication (adjusted odds ratio (AOR)=1.4, 95% confidence interval (CI)=1.1-1.6) and with being informed about what to expect (AOR=1.2, 95% CI=1.0-1.3). No statistically significant differences were observed in other outcomes. Even in those with an AD, important quality concerns remained; one in four reported an unmet need in pain, one in two reported inadequate emotional support for the patient, and one in three stated inadequate family emotional support. CONCLUSION: Bereaved family member report of completion of an AD was associated with greater use of hospice and fewer reported concerns with communication, yet important opportunities remain to improve the quality of end-of-life care.     

Family perspectives on end-of-life care experiences in nursing homes

PURPOSE: The purpose of this study is to expand knowledge regarding end-of-life care received in nursing homes through the use of narrative interviews with family members close to the decedents. DESIGN AND METHODS: We conducted follow-up qualitative interviews with 54 respondents who had participated in an earlier national survey of 1,578 informants. Interviews were taped and transcribed and then coded by a five-member, multidisciplinary team to identify overarching themes. RESULTS: Respondents report that the needs of dying patients are often insufficiently addressed by health care professionals. Their low expectations of nursing homes and their experiences cause many to become vigilant advocates. Respondents report that physicians are often "missing in action," and they desire more and better trained staff. They indicate that regulations reinforce task-focused rather than person-centered care and add to patient and family burden. Although hospice services are reported to enhance end-of-life care, respondents also report late referrals and occasional misunderstandings about the role and scope of hospice. IMPLICATIONS: Sustained efforts on many fronts are needed to improve end-of-life care in nursing homes. Policy recommendations are suggested.     

Racial differences in hospice use and in-hospital death among Medicare and Medicaid dual-eligible nursing home residents

PURPOSE: We investigated the role of race in predicting the likelihood of using hospice and dying in a hosptial among dual-eligible (Medicare and Medicaid) nursing home residents. DESIGN AND METHODS: This follow-back cohort study examined factors associated with hospice use and in-hospital death among non-Hispanic Black and non-Hispanic White dual-eligible nursing home residents (N = 30,765) who died in Florida during one of three years: 2000, 2001, or 2002. We used logistic regression models to identify independent predictors of hospice use and in-hospital death. RESULTS: After we controlled for other factors, Black residents were significantly less likely to use hospice and more likely to die in a hospital. Principal cause of death moderated the relationship between race and hospice use: Black residents were significantly less likely to use hospice than White residents among residents without cancer as principal cause of death, but there was no difference among residents with cancer as cause of death. Further analyses for each racial group revealed that the impact of cause of death in predicting hospice use was greater among Black residents than White residents. IMPLICATIONS: Hospice care offers many benefits, including reduced risk of in-hospital death, but Black nursing home residents are less likely to use hospice and may have different perceptions of need for hospice care compared with White residents. Future research and outreach efforts should focus on developing culturally sensitive, disease-focused end-of-life education and communication interventions that target residents, families, nursing home providers, and physicians.     

Hospice as Experienced by LTC Nurses and Their Perception of Resident Experiences

Objectives: This study utilized qualitative methods to better understand long-term care (LTC) nursing staff’s experience with hospice services and their perceptions of resident choice to utilize hospice services, as well as understand differences LTC nurses have experienced in regards to resident deaths. Methods: Interpretative Phenomenological Analysis (IPA) was utilized to extract themes and subthemes from 10 interviews that occurred with LTC nursing staff. Content analysis was also utilized to extract one noteworthy concept, which was a comparison of two resident deaths, with and without the utilization of hospice services.Results: Three main themes were extracted from the data: LTC nursing participant’s positive view of hospice, their perception that residents view hospice very negatively, and why residents choose to utilize hospice services. Participants also identified aspects of a “bad” or “good” death, with clear relationships noted when using hospice services. Conclusions: Findings identified a difference between the LTC nursing staff’s positive view of hospice and their belief that their residents view hospice services very negatively. According to these nurses’ experiences, to most residents, hospice meant something rather negative and feared. Clinical Implications: An intervention providing information about hospice services for LTC resident population may increase the percentage of older adults who utilize hospice services.     

Pain, dyspnea, and the quality of dying in long-term care

OBJECTIVES: To evaluate the relationship between pain, dyspnea, and family perceptions of the quality of dying in long-term care.
DESIGN: After-death interviews.
SETTING: Stratified random sample of 111 nursing homes and residential care and assisted living facilities in four states.
PARTICIPANTS: Paired interviews from facility staff and family caregivers for 325 deceased residents.
MEASUREMENTS: The outcome variable was the Quality of Dying in Long-Term Care (QOD-LTC), a psychometrically sound, retrospective scale representing psychosocial aspects of the quality of dying, obtained from interviews with family caregivers. Facility staff reported the presence, frequency, and severity of pain and dyspnea.
RESULTS: During the last month of life, nearly half of residents experienced pain or dyspnea. QOD-LTC scores did not differ for residents with and without pain (4.15 vs 4.02, P =.16). Overall, residents with dyspnea had better QOD-LTC scores than those without dyspnea (4.20 vs 3.99, P =.006). The association between dyspnea and a better QOD-LTC score was strongest in cognitively impaired residents and for those dying in residential care and assisted living facilities.
CONCLUSION: For residents dying in long-term care, pain and dyspnea were not associated with a poorer quality of dying as perceived by families of deceased residents. Instead, dyspnea may alert staff to the need for care. Initiatives to improve the quality of dying in long-term care should focus not only on physical symptoms, but also on the alleviation of nonphysical sources of suffering at the end of life.     

Referral and timing of referral to hospice care in nursing homes: the significant role of staff members

PURPOSE: Given concerns about end-of-life care for many nursing home (NH) residents, this study sought to understand factors influencing hospice referral or nonreferral as well as timing of referral. DESIGN AND METHODS: We conducted semistructured interviews with personnel from seven participating NHs and two hospices. We interviewed NH directors of nursing regarding facility referral practices and conducted interviews with 34 NH nurses, 30 NH aides, and 17 hospice nurses knowledgeable about the factors that led to the hospice status of 32 NH decedents. Selected decedents varied by diagnosis and hospice status (received hospice for >7 days, 相似文献   

Ability of surrogates to represent satisfaction of nursing home residents with quality of care.

OBJECTIVE: To measure the ability of surrogates to accurately represent nursing home residents' satisfaction with the nursing home care. DESIGN: Comparison by correlation analysis of questionnaire answers by nursing-home residents and their designated surrogates. SETTING: Four non-profit community nursing homes. PARTICIPANTS: One-hundred fifty-two resident-surrogate pairs were included, based on the following criteria: (1) the resident was able to respond to questions verbally and in English, had cognitive abilities sufficient to understand the questions, and had a responsible party who had a telephone number in the medical record; (2) both the resident and the surrogate agreed to be interviewed. OUTCOME MEASURES: A 26-item instrument (21 specific and 5 global items) was developed to measure surrogates' perceptions of residents' satisfaction with the quality of the physician services, nursing care, and the nursing home environment. The instrument was scored on a 4-point Likert scale in which higher scores indicated greater satisfaction and paralleled a similar instrument designed for nursing home residents. Correlation of residents' with surrogates' scores on the satisfaction instruments was examined. RESULTS: The mean score for most items was greater than 3.0, indicating overall satisfaction with the care. Correlations between surrogates and residents on specific items ranged from 0.1 to 0.55. Correlations were highest for global items and items addressing satisfaction with the environment. CONCLUSION: We conclude that nursing home residents' surrogates cannot accurately express the residents' satisfaction with all areas of nursing home care and that their evaluations should not be taken in lieu of the residents' opinions.