Director perceptions of end-of-life care at geriatric health services facilities in Japan

Geriatric health services facilities (GHSF) are expected to assume a greater role in caring for the dying elderly in the future. However, very little research has dealt with the topic. The aim of this nationwide study is to clarify current end-of-life care policies and practices of GHSF. The subjects were 2876 managing directors of GHSF. Data was collected through mailed questionnaires in 2003. The content of the questionnaires included: (i) general characteristics; (ii) end-of-life care policies; (iii) available medical treatments; and (iv) staff education. To evaluate the factors associated with end-of-life care policies at GHSF, we divided the facilities into two groups, according to whether their policy toward end-of-life care was progressive or regressive. The response rate was 40.3%. The results indicated that a total of 513 GHSF implemented progressive policies for end-of-life care. The factors associated with a progressive policy for end-of-life care were: (i) availability of medical intervention within and outside of the facilities; (ii) staff education; and (iii) discussion about end-of-life care policy with residents and family. Duration of stay also was positively associated with a progressive policy. Our study highlights the need for a national consensus on reforming the end-of-life care system of long-term care facilities.     

Non-medical palliative care and education to improve end-of-life care at geriatric health services facilities: A nationwide questionnaire survey of chief nurses

Background:   Geriatric health services facilities (GHSF) are expected to assume a growing role in caring for the dying elderly. However, research in this area has so far been scant. The purpose of the present study is to reveal the status of non-medical palliative care and staff education aiming at improving and enhancing end-of-life care at GHSF.
Methods:   The subjects were 2876 chief nurses of GHSF. Data was collected through a mailed questionnaire in 2003. The questionnaire covered the following: (i) staff perception of end-of-life care policies; (ii) staff education; and (iii) available non-medical care. To evaluate the factors correlated with end-of-life care policies at GHSF, we divided the facilities into two groups.
Results:   We analyzed the answers collected from 313 facilities with a progressive policy toward end-of-life care (PP group) and 818 with a regressive policy toward it (RP group). It was found that staff training was conducted more frequently among PP facilities. Generally, nurses in the PP facilities were more confident that they could provide comprehensive on-site end-of-life care and grieving support, but did not feel so sure about their ability to provide better end-of-life environments for dying residents and family by organizing outside support from voluntary and/or governmental organizations and religious organization for healing and to pursue appropriately a written follow-up communication with the bereaved family.
Conclusions:   Our results suggest that providing GHSF staff with education about end-of-life issues or setting up collaboration with the outside is an important factor to enhance overall end-of-life care at these facilities.     

Opinion survey of nursing or caring staff at long-term care facilities about end-of-life care provision and staff education

Although long-term care facilities are expected to assume a growing responsibility in caring for the dying elderly, research in this area is still in its early stages. The present study aims to explore the educational and support needs of nursing home care staff in comparison with geriatric hospital, which provide 24-h physician service. The subjects in this study were caring staff of 45 long-term care facilities in Nagoya City as of December 2006. Data was collected through questionnaires covering the following: (i) possible barriers to end-of-life care provision at own facilities and (ii) areas in which a need for education was perceived. One thousand and fifty nine staff responded. Approximately three-fourths of the staff felt that additional staff, physician or nurse available 24 h, and staff education were crucial in the provision of end-of-life care at their facilities. Dementia care, physical care, communication with residents and families, psychological aspects of dying, and pain/symptom control were listed as the five items deemed most important to address. This study indicated that nursing and caring staff recognize a need in 24-h medical service and hospital involvement of end-of-life care provision at their facilities, and that staff are eager to be educated concerning end-of-life.     

Resident outcomes in small-house nursing homes: a longitudinal evaluation of the initial green house program

OBJECTIVES: To determine the effects of a small-house nursing home model, THE GREEN HOUSE (GH), on residents' reported outcomes and quality of care. DESIGN: Two-year longitudinal quasi-experimental study comparing GH residents with residents at two comparison sites using data collected at baseline and three follow-up intervals. SETTING: Four 10-person GHs, the sponsoring nursing home for those GHs, and a traditional nursing home with the same owner. PARTICIPANTS: All residents in the GHs (40 at any time) at baseline and three 6-month follow-up intervals, and 40 randomly selected residents in each of the two comparison groups. INTERVENTION: The GH alters the physical scale environment (small-scale, private rooms and bathrooms, residential kitchen, dining room, and hearth), the staffing model for professional and certified nursing assistants, and the philosophy of care. MEASUREMENTS: Scales for 11 domains of resident quality of life, emotional well-being, satisfaction, self-reported health, and functional status were derived from interviews at four points in time. Quality of care was measured using indicators derived from Minimum Data Set assessments. RESULTS: Controlling for baseline characteristics (age, sex, activities of daily living, date of admission, and proxy interview status), statistically significant differences in self-reported dimensions of quality of life favored the GHs over one or both comparison groups. The quality of care in the GHs at least equaled, and for change in functional status exceeded, the comparison nursing homes. CONCLUSION: The GH is a promising model to improve quality of life for nursing home residents, with implications for staff development and medical director roles.     

Frontline caregiver daily practices: a comparison study of traditional nursing homes and the Green House project sites

OBJECTIVES: To describe differences in frontline caregiver daily practice in two types of skilled nursing facility (SNF) settings, Green House (GH) homes and traditional SNF units, related to overall staffing (nursing and nonnursing departments), direct care and indirect care time per resident day, and staff time interacting with residents. DESIGN: Observational, interview, and survey study comparing frontline caregiver daily practice in GH homes and traditional SNFs. SETTING: Twenty‐seven sites (GH homes and traditional SNF units). PARTICIPANTS: Two hundred forty staff from participating sites. MEASUREMENTS: Site and resident characteristics, nursing and nonnursing department staff hours per resident day (HPRDs), certified nursing assistant (CNA) direct and indirect care HPRDs, and CNA HPRDs engaged with residents. RESULTS: Staffing from nursing and nonnursing departments combined, excluding administrative, was 0.3 less HPRDs (18 minutes) in GH homes than in traditional SNFs. CNAs in GH homes, although responsible for more nonnursing activities such as laundry and housekeeping, spent 0.4 more HPRDs (24 minutes) in direct care activities than CNAs in traditional SNFs. CONCLUSION: The results challenge the assumption that staffing efficiencies cannot be achieved in small environments such as a GH home. Although the GH model has higher ratio of CNA staff to residents than traditional SNF units, overall staff time (combined total of nursing and nonnursing HPRDs) is slightly less in GH homes. The GH model allows for expanded responsibilities of CNAs in indirect care activities and more time in direct care activities and engaging directly with resident.     

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.     

End of Life Care for Older Russian Immigrants - Perspectives of Russian Immigrants and Hospice Staff

This pilot study examined immigrant Russian seniors and adult children’s views on end-of-life care, and hospice staff members’ experiences providing care to diverse immigrant clients, in areas of North Carolina with a high proportion of immigrants. Data were collected through individual in-depth interviews with informants, including Russian immigrant seniors, Russian adult children, and hospice staff, and analyzed by qualitative techniques. Findings indicate that there is little awareness of end-of-life care options among the Russian immigrant community in North Carolina. End-of-life care is rarely discussed within the family of first generation Russian immigrants but second-generation families are more open to doing so. First generation immigrant Russian seniors in our study do not seem to want any specialized end-of-life care often due to lack of awareness, and prefer family care. Second generation seniors’ attitudes are more accepting of this type of care. Hospice staff serve all those who seek care, receive training to serve diverse clients, and prioritize professional policies. There is sometimes potential for a gap between hospice policies regarding care and immigrant families’ expectations for care. Results suggest a great need for community outreach to immigrant groups to raise awareness of end-of-life care, including advance directives and hospice care and the role of interpreters in health care settings.     

Emotional and physical health of informal caregivers of residents at the end of life: the role of social support

OBJECTIVES: The objectives of this study were to examine the relationship between selected decedent and caregiver characteristics, facility-related perceptions, and emotional and physical health of 434 informal caregivers (94% family) of recently deceased residents of residential care/assisted living facilities and nursing homes. We also examined potential mediating effects of social support (informal, staff, and spiritual). METHODS: We analyzed data using linear mixed models. RESULTS: Among caregivers, younger age, female gender, more education, financial burden, other dependents, poorer perceptions of care, and more care involvement were associated with more emotional strain. More staff support also was associated with more emotional strain and partially mediated the relationship between having a trusted staff member and emotional strain. Characteristics associated with poorer physical health included unemployment, financial burden, poorer physician communication, and trusted staff member. Informal social support was directly related to better physical health and mediated the relationships between physical health and both physician communication and financial burden. DISCUSSION: Many characteristics related to end-of-life caregiving outcomes in long-term care are consistent with community-based studies, suggesting that end-of-life caregiving outcomes in long-term care are not markedly different than in other settings. However, the role of staff support may either facilitate or complicate emotional strain and merits additional study.     

Advance care planning in nursing homes: correlates of capacity and possession of advance directives

PURPOSE: The identification of nursing home residents who can continue to participate in advance care planning about end-of-life care is a critical clinical and bioethical issue. This study uses high quality observational research to identify correlates of advance care planning in nursing homes, including objective measurement of capacity. DESIGN AND METHODS: The authors used cross-sectional, cohort study between 1997 and 1999. Seventy-eight residents (M age = 83.97, SD = 8.2) and their proxies (M age = 59.23, SD = 11.77) were included across five nursing homes. The authors obtained data via chart review, proxy interviews, resident assessments, survey completion by certified nursing assistants, and direct observation of residents' daily behaviors. RESULTS: Capacity assessments revealed that most residents could state a simple treatment preference (82.4%), but a sizable number did not retain capacity to understand treatment alternatives or appreciate the consequences of their choice. Global cognitive ability (Mini-Mental State Examination score) was related to understanding and appreciation. When the authors removed the effects of global cognitive ability, understanding and appreciation were related to time spent by residents in verbal interaction with others. Residents were more likely to possess advance directives when proxies possessed advance directives, proxies were less religious, and residents were socially engaged. IMPLICATIONS: Assessment of proxy beliefs and direct determination of residents' decisional capacity and social engagement may help nursing home staff identify families who may participate in advance planning for end-of-life medical care. Measures of global cognitive ability offer limited information about resident capacity for decision making. Decisional capacity assessments should enhance the verbal ability of individuals with dementia by reducing reliance on memory in the assessment process. Interventions to engage residents and families in structured discussions for end-of-life planning are needed.     

Death at Home Following a Targeted Advance-Care Planning Process at Home: The Kitchen Table Discussion

OBJECTIVE: To determine whether home health agency patients' preferences to die at home can be honored following a structured, professionally facilitated advance-care planning (ACP) process provided in the home. DESIGN: A case series of patients who were identified by their home health agency nurses as having a life-limiting illness and then referred for social service assessment, followed for at least 6 months, with median follow-up of 191 days. SETTING: A large, urban, home health agency owned by a not-for-profit integrated healthcare system. PARTICIPANTS: Eighty-four adult patients (median age 75, range 37-94) receiving home care services other than hospice. INTERVENTION: Formally structured social work visits at patients' homes to discuss end-of-life issues, with communication of results to home health nurses and attending physicians. Social workers performed standard psychosocial assessments, obtained patient and family preferences regarding end-of-life care, and provided education about hospice services. MEASUREMENTS: Acceptance of the ACP process, preferences for location of end-of-life care, location of care at the end of life, adequacy of timing of intervention as measured by length of life after ACP, and use of hospice services. RESULTS: Eighty-three of 84 participants (99%) were willing to complete an ACP process in the home setting. Of the 54 patients expressing a clear preference for location of end-of-life care, 46 (82%) wanted this care to be at home. Thirty-nine (46%) of the participants died within 90 days of ACP; 58 (69%) died by the end of the study. Forty-three (75%) of these deaths occurred at home or in a hospice residence. Fifty-one (61%) patients used home, residential, or nursing home-based hospice services during the study. CONCLUSION: In this series of seriously ill home health patients, most preferred to die at home and virtually all were willing to participate in a home-based ACP process. Facilitating ACP among such patients and their families was associated with end-of-life care at home. Use of hospice services was common following ACP in this population.     

Discrepancies in preferences regarding the care of terminal-phase pneumonia in elderly patients among patients,families, and doctors: A multicenter questionnaire survey in nagasaki,Japan

BackgroundBefore advance care planning, it is essential to understand the differences in preferences for medical care of terminal-phase pneumonia in elderly patients among the patients, their families, and their doctors. This study aimed to clarify these differences and investigate the actual care provided to elderly patients with pneumonia in nursing hospitals.MethodsMulticenter questionnaire surveys of 179 patients admitted to nursing homes and long-term care beds in hospitals of three healthcare corporations, their families, and their physicians were conducted between January and August 2018. The questionnaires mainly assessed preferences for life-prolonging medical care procedures, including antibiotic treatments, in terminal-phase pneumonia. A follow-up survey regarding the prognosis and the actual care provided by the physicians was conducted 1 year after the first survey.ResultsOnly 16.2% of the patients had sufficient prior discussions with their families about their care. More families preferred cardiac massage, intubation, and tracheostomy, while fewer families preferred peripheral intravenous fluids or antibiotics than physicians. A total of 30 patients’ families (16.7%) answered to withhold antibiotic treatment, while all physicians supported antibiotic administration. The only significant factor related to withholding antibiotics was high age (P = 0.0057). The follow-up survey administered to the doctors revealed that 49 patients (35.7%) had died within one year. Of the 137 patients, 54 patients (39.4%) had developed pneumonia during this observation period and all were treated with antibiotics.ConclusionsThis study revealed large discrepancies between patients/families and physicians regarding preferences for care. Medical staff should make efforts to fill the gap by ensuring advance care planning.     

Processes of decision making and end-of-life care for patients with dementia in group homes in Japan

The aim of the present study was to clarify the processes of decision making and end-of-life care for patients with dementia in the group homes in Japan. We investigated 45 group homes for patients with dementia regarding cases of end-of-life care during a 3-year period between March 2004 and February 2007. Thirty-three cases from respondent group homes were collected. Patients had middle or advanced levels of dementia, with only six cases of confirmed wishes about the place of death. In most cases, managing directors confirmed family members' wishes (66.7%) and performed a central role in planning for end-of-life care (60.6%). About one-third of patients (36.4%) were able to eat by mouth until death. Intravenous feeding was mainly used when the patient was unable to take anything by mouth (51.5%). Methods of sustenance were usually previously decided by consulting with patient or families (45.5%). Approximately half of patients (54.6%) were attended by family members who stayed in the group home. Future research should examine the quality of end-of-life care in the group homes using evaluations of quality of life (QoL) for patients and family members.     

Angels of the night: evening and night patrols for homebound elders in Sweden

PURPOSE: The purpose of this study was to describe the work of evening and night home care patrols in Swedish old-age care by examining how staff members view their work and the specific work content. DESIGN AND METHODS: The authors developed two questionnaires: one that was to be answered jointly by the patrol teams, and one to be completed by each individual member of a team. All patrols in the municipality of J?nk?ping, Sweden, were asked to participate. RESULTS: The most frequent kind of help provided by evening and night patrols involves personal care, but help with medications and injections are also frequent. The staff reported that it is becoming more common for the patrols to assist people with terminal illnesses. The patrols also increasingly assist people with psychiatric problems. The staff feels that the job may be becoming too diverse and that they need further education for the range of tasks they are asked to perform. IMPLICATIONS: The patrols are very flexible in the services provided. Without the patrols, the staff members believe that many persons would have to leave their homes to go to institutions.     

Effects of advance care education in cardiovascular rehabilitation programs: a prospective randomized study.

PURPOSE: To determine the effect of advance care education provided to patients enrolled in cardiovascular rehabilitation (CVR) programs and assess patients' acceptance of the educational program. METHODS: In a multicenter, prospective, randomized study, the authors administered two questionnaires 6 months apart to 284 patients enrolled in 14 CVR programs in 11 states. An educational group (99 subjects) participated in educational programs related to advance care planning and received advance directive forms after completing the first questionnaires; 185 subjects served as controls. Primary outcomes were completion of patient-physician discussions of end-of-life issues and patient confidence that their end-of-life wishes were understood by their physicians. Secondary outcomes were completion of formal advance directives and patient acceptance of the educational program. RESULTS: Both the educational and control groups demonstrated a larger proportion of patients at the end of the study, compared with the amount at the beginning of the study, who had completed living wills, durable powers of attorney for healthcare, and discussions with their physicians about advance directives and life support care. These outcomes were not observed more commonly after the educational intervention. Neither groups gained confidence, however, that their physicians understood their end-of-life wishes. Only 8.6% of patients had a negative response to the educational program. CONCLUSIONS: Advance care education is well received by patients enrolled in CVR programs. Enrollment in CVR promotes advance care planning to a small but measurable degree CVR rehabilitation programs appear to be acceptable sites for advance care planning but further research is needed to develop effective educational interventions.     

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.     

End-of-life care in black and white: race matters for medical care of dying patients and their families

OBJECTIVES: To compare the end-of-life medical care experienced by African-American and white decedents and their families. DESIGN: Cross-sectional, retrospective survey with weighted results based on a two-stage probability sampling design. SETTING: Hospitals, nursing homes, and home-based medical services across the United States. PARTICIPANTS: Surrogates (N=1,447; primarily family members) for decedents from 22 states. MEASUREMENTS: Validated end-of-life care outcomes concerning symptom management, decision-making, informing and supporting families, individualized care, coordination, service utilization, and financial impact. RESULTS: Family members of African-American decedents were less likely than those of white decedents to rate the care received as excellent or very good (odds ratio (OR)=0.4). They were more likely to report absent (OR=2.4) or problematic (OR=1.9) physician communication, concerns with being informed (OR=2.5), and concerns with family support (OR=2.6). Family members of African Americans were less likely than those of whites to report that the decedent had treatment wishes (OR=0.3) or written advance care planning documents (OR=0.4). These differences persist when limiting the sample to respondents whose expectations for life-sustaining treatments matched treatments received. Family members of African-American decedents also were more likely to report financial hardship due to savings depletion (OR=2.1) or difficulty paying for care (OR=2.0) and that family/friends (OR=2.0) or home health workers (OR=1.9) provided home care. CONCLUSION: This national study brings evidence that racial disparities persist into end-of-life care, particularly regarding communication and family needs. Results also suggest different home care patterns and levels of financial impact.     

Needlestick injuries and needle disposal in Minnesota nursing homes

We examined needle use and disposal, needlestick injuries and their management, and employee education regarding the acquired immunodeficiency syndrome and needle use by means of a questionnaire sent to all long-term care facilities certified for skilled care in Minnesota. Responses were received from 297 of 349 (85.1%) homes. Nearly all homes (271 of 293; 92.5%) provided education for new nursing employees about use and disposal of needles. Disposal of needles and sharps was generally consistent with current recommendations for short-term care hospitals. Needlestick injuries were usually related to recapping and were most common in registered and licensed practical nurses but were infrequent (i.e., less than 1 injury per home per employee-year) probably because parenteral therapy is infrequently used in long-term care settings. Only slightly over half (166 of 286; 58%) of the homes had protocols for management of needlestick injuries. Although Minnesota nursing homes properly dispose of needles and sharps, many of these institutions need to develop policies for management of needlestick injuries that are consistent with current recommendations.     

Cardiopulmonary resuscitation in long-term care facilities: a survey of do-not-resuscitate orders in nursing homes

Growing public debate regarding no cardiopulmonary resuscitation (no-CPR) policies in acute care hospitals, together with recent changes in the patient population of long-term care facilities, has led nursing homes to examine their need for resuscitation policies. To determine current cardiopulmonary resuscitation policies and procedures in nursing homes, medical directors and directors of nursing service in long-term care facilities in Portland, Oregon, were surveyed. Seventy-five percent responded; of these, only 41% reported having a resuscitation policy. Of those with no policy, 70% thought one was needed. Most nursing homes reported that resuscitation was infrequently discussed with patients and families. When a no-CPR determination was made, it was usually documented in the patient's chart. Training in basic life support was required for registered nurses in two thirds of the facilities. Few homes had equipment necessary for advanced life support. It is recommended that: a) nursing homes develop cardiopulmonary resuscitation policies; b) resuscitation orders be made part of the medical record; and c) nursing home personnel increase their ability to perform basic life support.     

National survey on the current status of programs to teach end-of-life care to undergraduates of medical and nursing schools in Japan

AIM: We conducted a national survey to examine the current status of programs to teach end-of-life care to undergraduates of Japanese medical and nursing schools in 2004. METHODS: Our survey focused on the following areas: (1) the present status of curricula to teach end-of-life care, (2) topics covered in the curricula, (3) details of the timing of existing end-of-life care teaching programs and of departments responsible for it, (4) teaching methods, (5) education assessment tool, (6) reading list of textbooks. RESULTS: 50.6% of the medical schools and 40.9% of the nursing schools participated. Most of the schools offered end-of-life care education programs, and 45% of the medical schools and 68.9% of the nursing schools offered education concerning end-of-life care for elderly. The most frequent teaching timing was the fourth year of medical school and the third year of nursing school. Broader end-of-life topics were covered in the curriculum in the nursing schools than the medical schools. One fourth of the nursing schools offered a separate course in end-of-life care. The mean number of teaching hours was 7.6 in the medical schools and 35.5 in the nursing schools. More nursing schools offered educational programs in which students can gain experience with end-of-life care than medical schools. A few institutions used practiced examinations to evaluate students' learning. A reading list of end-of-life care textbooks was provided in 10% of the medical schools and 35.6% of the nursing schools. CONCLUSION: Our survey suggested that systematizing end-of-life care education and improvement in text content are on the way.