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.     

Current admission policies of long-term care facilities in Japan

Background:   The rapidly aging society in Japan is putting demands on long-term care facilities for the elderly who require care. In Europe and the USA, there is ongoing reform of elderly care services, but the establishment of system based on social insurance is still being explored in Japan.
Methods:   Two studies were conducted, the first in 2000 and the second in 2001, involving 91 long-term care facilities located in or around the city of Nagoya. Questionnaires were sent to facility directors, chief administrators or head nurses to inquire about their admission policies for six major patient categories. Two educational lectures on methicillin-resistant Staphylococcus aureus (MRSA) and urinary incontinence were given between the distribution of the questionnaires.
Results:   For all six categories featured on the questionnaire, the acceptance rate in both studies was the highest in geriatric hospitals, and an improvement in acceptance rates was seen in the second study in all three types of care facilities. When the effect the lectures had on changes in admission policies at these facilities was examined, no correlation was found.
Conclusions:   Lectures should be given to facility management and personnel to raise their awareness of key issues and improve their efficiency.     

Age-related differences in care receipt and symptom experience of elderly cancer patients dying at home: Lessons from the DEATH project

Background:   Data on the differences between older and younger elderly cancer patients dying at home is sparse. To clarify age-related differences in symptom experience and care receipt of elderly cancer patients at end-of-life, we conducted a subanalysis study of the Dying Elderly at Home (DEATH) project, a multicenter study of 240 elderly aged 65 and older dying at home.
Methods:   We assessed the frequency of symptom experience and end-of-life care receipt in home elderly patients during the last 2 days of their lives and evaluated the differences between younger elderly (aged 65–74) and older elderly (aged 75+) cancer decedents. The general practitioners were asked to fill out a questionnaire immediately after the death of study patients. A total of 66 younger and 51 older elderly cancer decedents were included in the analysis.
Results:   Coma and dementia were common among younger and older elderly patients. Older decedents were less likely to experience anxiety, but, after adjustment for baseline characteristics, this age-related difference did not clearly appear. Older decedents were also less likely to receive opioids than younger decedents. There were no significant differences in volume of i.v. hydration between the two groups.
Conclusions:   Our results suggested that there were no differences in symptom experience and care receipt among older and younger decedents, except in opioid use, at end-of-life. These findings imply a similar need of end-of-life care for younger and older elderly cancer patients who opt for home death.     

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.     

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.     

End of life in the intensive care unit: knowledge and practice of clinicians from Karachi, Pakistan

Background:  With improvements in the care of critically ill, physicians are faced with obligations to provide quality end-of-life care. Barriers to this include inadequate understanding of the dying patient and withdrawal or limitation of care. The objectives of this study were to document the comprehensions of physicians and nurses regarding the recognition and practice of end-of-life care for critically ill patients placed on life support in the intensive care unit.
Methods:  This was a cross-sectional study carried out at three hospitals in Karachi. Chi-squared analysis and one-way anova were used to compare differences in response between the groups.
Results:  One hundred and thirty-seven physicians and critical care nurses completed the survey. 'Brain death' was defined as an ' irreversible cessation of brainstem function' by 85% respondents, with 50% relying on specialty consultation. Withdrawal of life support is practised by 83.2%; physicians are more likely (Chi square test P -value < 0.001) to withdraw mechanical ventilation, compared with nurses who would withdraw vasopressors ( P -value 0.006). In a do not resuscitate patient, 72.3% use vasopressors, 83% initiate haemodialysis and 17.5% use non-invasive ventilation; 72.6% consult Hospital Ethics Committees; 16% respondents never withdraw life support; 28.3% considered it their responsibility to 'sustain life at all costs' and only 8% gave religious beliefs as a reason.
Conclusions:  There are confusions in the definition of brain death, end-of-life recognition and indications and processes of withdrawal of life support. There are discrepancies between physicians' and nurses' perceptions and attitudes. Clearly, teaching programmes will need to incorporate cultural and religious differences in their ethics curricula.     

End-of-life care at group homes for patients with dementia in Japan. Findings from an analysis of policy-related differences

In Japan, the number of group homes for patients with dementia (GHs) has been increasing in recent years. A growing number of elderly people now prefer to spend their final years in group homes or other long-term care facilities, a choice that their families support. The aim of this nationwide study is to clarify the current end-of-life care policies and practices of GHs. The subjects were 3701 managing directors of GHs. Data were collected through mailed, anonymous, self-reported questionnaires in 2003. The content of the questionnaires included: (1) general characteristics of the GH, (2) end-of-life care policies and experiences, (3) available end-of-life care services at the GH, (4) staff education concerning end-of-life care, and (5) types of information provided to users and families. The response rate was 45.6%. Many GHs had implemented progressive policies for end-of-life care. GHs with progressive policies for end-of-life care were found to have different backgrounds than those with regressive policies. Only a few GHs provided end-of-life care education for their staff. GHs with progressive policies for end-of-life care tended to have the following characteristics: availability of medical intervention within and outside of the GH, self-contained physical plant and staff education about end-of-life care. Further research is needed to determine the most effective end-of-life care systems for GHs.     

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.     

Hospital care of people living in residential care facilities: Profile, utilization patterns and factors impacting on quality and safety of care

Background:   Residents in residential care facilities (RCF) are frequent users of acute hospital services. However, the interface between the two sectors remains relatively unexplored. Our objective was to determine the patterns of utilization, characteristics and experiences of RCF residents accessing a tertiary referral center (TRC).
Methods:   An observational study of RCF residents presenting to the TRC emergency department (ED). The experiences of acute care services were explored for more than one-quarter of this group 2–3 days postdischarge. The carer within the RCF acted as the proxy respondent.
Results:   During the study period, RCF residents accounted for 2.3% of all ED presentations. These presentations involved 526 residents. The dimension "continuity of care" for the Picker Patient Experience questionnaire had the highest proportion (53.1%) reporting a problem. The likelihood of reporting a problem for "continuity of care" (odds ratio [OR], 3.58; confidence interval [CI], 1.72–7.45) and "information and education" (OR, 2.62; CI, 1.14–3.01) were higher if the resident was admitted to a ward compared to ED only. If the resident had a low level care status the likelihood of reporting a problem for "continuity of care" (OR, 2.8; CI, 1.02–7.72) also increased. The odds of RCF staff reporting a problem for "ambulance service" were significantly higher if the resident's presentation was related to a fall. (OR, 3.35; CI, 1.28–8.8).
Conclusion:   The utilization rates for acute hospital care in our study were similar to the two previous Australian studies. Factors at the patient and organizational level impacted significantly on problems relating to the quality and safety of care being reported.     

The status of medical education in end-of-life care

OBJECTIVE: To assess the status of medical education in end-of-life care and identify opportunities for improvement. DESIGN: Telephone survey. SETTING: U.S. academic medical centers. PARTICIPANTS: National probability sample of 1,455 students, 296 residents, and 287 faculty (response rates 62%, 56%, and 41%, respectively) affiliated with a random sample of 62 accredited U.S. medical schools. MEASUREMENTS AND MAIN RESULTS: Measurements assessed attitudes, quantity and quality of education, preparation to provide or teach care, and perceived value of care for dying patients. Ninety percent or more of respondents held positive views about physicians' responsibility and ability to help dying patients. However, fewer than 18% of students and residents received formal end-of-life care education, 39% of students reported being unprepared to address patients' fears, and nearly half felt unprepared to manage their feelings about patients' deaths or help bereaved families. More than 40% of residents felt unprepared to teach end-of-life care. More than 40% of respondents reported that dying patients were not considered good teaching cases, and that meeting psychosocial needs of dying patients was not considered a core competency. Forty-nine percent of students had told patients about the existence of a life-threatening illness, but only half received feedback from residents or attendings; nearly all residents had talked with patients about wishes for end-of-life care, and 33% received no feedback. CONCLUSIONS: Students and residents in the United States feel unprepared to provide, and faculty and residents unprepared to teach, many key components of good care for the dying. Current educational practices and institutional culture in U.S. medical schools do not support adequate end-of-life care, and attention to both curricular and cultural change are needed to improve end-of-life care education.     

End-of-life care in assisted living and related residential care settings: comparison with nursing homes

OBJECTIVES: To define the current state of end-of-life care in residential care/assisted living (RC/AL) facilities and nursing homes (NHs) and to compare these two types of care settings. DESIGN: Interviews of staff and family informants about deaths that occurred during a longitudinal study. SETTING: Fifty-five RC/AL facilities and 26 NHs in Florida, Maryland, New Jersey, and North Carolina. PARTICIPANTS: Two hundred twenty-four staff and family informants that best knew the 73 RC/AL residents and 72 NH residents who died in or within 3 days after discharge from a study facility. MEASUREMENTS: Telephone interviews conducted with the facility staff member who knew the decedent best and the family member who was most involved in care during the last month of life of the decedent. Data were collected on circumstances of death, perceptions of dying process, cause of death, care during the last month of life, mood, discomfort, and family satisfaction. RESULTS: Most decedents died in the facility where they had resided, and more than half of the subjects were alone when they died. Greater proportions of staff and family in the NHs knew that the resident's death was only days or weeks away. Both RC/AL and NH residents experienced few highly negative moods, and even on their most uncomfortable day, the overall discomfort was low for residents in both facility types. Summary ratings of family satisfaction were significantly higher for the RC/AL (32.1) than the NH (41.2) group (P=.016). CONCLUSION: These data suggest that end-of-life care in RC/AL settings appears similar in process and outcomes to that provided in NHs. Thus, aging and dying-in-place can effectively occur in RC/AL.     

End-of-life care in the curriculum in Japan: a national survey of senior medical students

AIM: We conducted a national survey of senior medical students' attitudes about end-of-life care teaching programs for undergraduate students of Japanese medical schools from April 2004 to May 2006. METHODS: Our questionnaire survey focused on the students' attitudes towards the following end-of-life areas: 1) end-of-life topics, 2) teaching methods, 3) putting theories into practice, and 4) overall end-of-life issue. RESULTS: Overall, 1,039 students from 16 medical schools responded to our survey. The students who took part in the program appreciated the class on communication techniques with dying patients or family members of dying patients. As for the students who did not participate in the program, they expressed the wish to join a class concerning these issues. These students also expressed an interest in visiting hospices or conducting interviews with dying patients as part of their training. Most of the students formulated good opinions toward end-of-life issues, but not toward end-of-life practices. Regardless of whether they joined the program or not, most of the students had a positive attitude towards end-of-life education programs. CONCLUSION: The survey highlighted the need to consider wider implementation and improvement of end-of-life care education in the Japanese curriculum.     

There is hope for the future: national survey results reveal that geriatric medicine fellows are well-educated in end-of-life care

OBJECTIVES: To assess the status of geriatric medicine (GM) fellows' training experiences in end-of-life care via self-report. DESIGN: Anonymous surveys completed by mail, Web access, and telephone. SETTING: U.S. accredited GM fellowship training programs. PARTICIPANTS: Two hundred ninety-six surveys were sent to graduating GM fellows in 1- and 2-year programs across the Unites States. MEASUREMENTS: Measurements assessed self-reported attitudes, quantity and quality of end-of-life care education, preparation to provide care, and perceived value of caring for dying patients. RESULTS: Response rate was 74%. Ninety-five percent or more of respondents held positive views about physicians' responsibility and ability to help dying patients. Seventy percent of fellows had completed a rotation focused on end-of-life care. Fellows who had done such rotations rated their end-of-life care education as highly as their overall geriatrics training. Fellows frequently received teaching in many end-of-life care topics, with lower rates of teaching how to say goodbye and responding to requests for assisted suicide. Overall, fellows felt well prepared to care for dying patients. Four factors independently predicted such preparedness: having had a palliative or end-of-life care rotation, being female, having been taught how to say goodbye to patients, and perceiving that it is important to attending physicians that fellows learn to care for dying patients. CONCLUSION: GM fellows feel their end-of-life care education is excellent and feel prepared to take care of dying patients. It is critical that geriatricians in training have access to and take advantage of palliative and end-of-life care rotations.     

The last 48 hours of life in long-term care: a focused chart audit

OBJECTIVES: As a component of palliative care educational program development, the faculty at the University of Ottawa Institute of Palliative Care wished to assess end-of-life care for patients in long-term care (LTC) settings to develop an educational strategy for physicians. DESIGN: A chart audit, focusing on the last 48 hours of life of residents dying in LTC facilities. SETTING: Five LTC facilities in a city in Canada. PARTICIPANTS: Residents who died in the LTC facilities in a 12-month period. Those who died suddenly (i.e., with no palliation period) or in a hospital were excluded. MEASUREMENTS: Symptoms highlighted in the literature as commonly found in the terminally ill and the matching treatments were recorded on an audit form created by the authors. Included were pain, dyspnea, noisy breathing, delirium, dysphagia, fever, and myoclonus. RESULTS: One hundred eighty-five charts were reviewed. A large number of patients were cognitively impaired. Cancer was the final diagnosis in 14% of cases. Respiratory symptoms were the most prevalent symptom, with dyspnea being first and noisy breathing third. Pain was second, with a prevalence similar to that found in studies of cancer patients. Dyspnea was not treated in 23% of the patients with this symptom; opioids were used in only 27% of cases with dyspnea. Ninety-nine percent of patients who experienced pain were treated for it. Less than one-third of patients with noisy breathing were treated. Delirium was not treated in 38% of the cases, and no anti-dopaminergic medications were administered. Nurses were primarily responsible for documenting end-of-life issues, supporting the families of the dying residents, and communicating with other team members. CONCLUSION: The focused chart audit identified the high prevalence of cognitive impairment in the patient population, which complicates symptom management. Respiratory symptoms predominated in the last 48 hours of life. This symptom profile differs from that of cancer patients, who, according to the literature, have more pain and less respiratory trouble. Management of symptoms was variable. Nurses played a crucial role in the care of dying residents through their documentation and communication of end-of-life issues. Appropriate palliative care education can provide knowledge and skills to all health-care professionals, including physicians, and assist them in the control of symptoms and improvement of quality of life for patients dying in LTC facilities.     

Increasing influenza immunization for long-term care facility staff using quality improvement

OBJECTIVES: To improve staff immunization rates for influenza in long-term care facilities (LTCFs).
DESIGN: A quality improvement project.
SETTING: LTCFs ranging in size from 50 to 2,000 beds.
PARTICIPANTS: Staff members at facilities.
MEASUREMENTS: Change in staff influenza immunization rate.
RESULTS: Of the 13 nursing homes involved, 11 improved their staff influenza immunization rates; nine improved more than 10%, and six improved to a rate greater than 55%, a level that corresponds to substantial protection against outbreaks. Staff education was essential but insufficient. Direct encouragement and dramatic informative endeavors helped, as did financial incentives, competitions, and requiring unambiguously worded consents for refusals. Paying staff members $150 each achieved improvement rapidly.
CONCLUSION: Quality improvement increased staff immunization rates at LTCFs, which reduces the risk of an influenza outbreak. Based on the insights learned about effective changes, the project developed a change package for use by other LTCFs.     

The Use of Physical Restraints in Home Care in the Netherlands

OBJECTIVES: To gain more knowledge of the application of physical restraints to restrict, restrain, or prevent movement by elderly people living at home.
DESIGN: Survey.
SETTING: Nursing staff in Dutch home care.
PARTICIPANTS: One hundred fifty-seven nursing staff in home care (registered nurses and certified nursing assistants) from a randomly selected and nationally representative panel returned the questionnaire (response rate 72%).
MEASUREMENTS: A structured questionnaire on the use of physical restraints.
RESULTS: Four of every five nursing staff members have applied physical restraints. The use of bed rails, putting the client in a deep chair or using a chair with a table, and locking doors to prevent wandering were most frequently applied, often at the request of the client or his or her family. Protection of the client is the reason most frequently given for these actions. Almost all respondents (94%) know of no alternatives, nor does consensus exist on what is considered to be a physical restraint.
CONCLUSION: Guidelines are necessary regarding the course of action to be taken when a client is in danger of hurting him- or herself. Further education on and due consideration of the use of physical restraints in home care are also required.     

Burnout syndrome in critical care nursing staff

RATIONALE: Burnout syndrome (BOS) associated with stress has been documented in health care professionals in many specialties. The intensive care unit (ICU) is a highly stressful environment. Little is known about BOS in critical care nursing staff. OBJECTIVES: To identify determinants of BOS in critical care nurses. METHODS: We conducted a questionnaire survey in France. Among 278 ICUs contacted for the study, 165 (59.4%) included 2,525 nursing staff members, of whom 2,392 returned questionnaires with complete Maslach Burnout Inventory data. MEASUREMENTS AND MAIN RESULTS: Of the 2,392 respondents (82% female), 80% were nurses, 15% nursing assistants, and 5% head nurses. Severe BOS-related symptoms were identified in 790 (33%) respondents. By multivariate analysis, four domains were associated with severe BOS: (1) personal characteristics, such as age (odds ratio [OR], 0.97/yr; confidence interval [CI], 0.96-0.99; p=0.0008); (2) organizational factors, such as ability to choose days off (OR, 0.69; CI, 0.52-0.91; p=0.009) or participation in an ICU research group (OR, 0.74; CI, 0.56-0.97; p=0.03); (3) quality of working relations (1-10 scale), such as conflicts with patients (OR, 1.96; CI, 1.16-1.30; p=0.01), relationship with head nurse (OR, 0.92/point; CI, 0.86-0.98; p=0.02) or physicians (OR, 0.81; CI, 0.74-0.87; p=0.0001); and (4) end-of-life related factors, such as caring for a dying patient (OR, 1.39; CI, 1.04-1.85; p=0.02), and number of decisions to forego life-sustaining treatments in the last week (OR, 1.14; CI, 1.01-1.29; p=0.04). CONCLUSION: One-third of ICU nursing staff had severe BOS. Areas for improvement identified in our study include conflict prevention, participation in ICU research groups, and better management of end-of-life care. Interventional studies are needed to investigate these potentially preventive strategies.     

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.     

Factors enabling home death of the elderly in an institution specializing in home medical care: Analysis of apprehension of the bereaved family

Aim:   To determine the factors enabling home death despite caregiver apprehension about home medical care.
Methods:   This study was an anonymous mailed survey of bereaved family members (the caregiver) of patients who died in a home medical care setting provided by an institution specializing in home medical care in Japan (home death rate, ∼80%). We analyzed the relationships between caregiver apprehension about home medical care, overall satisfaction with home medical care and the place of death.
Results:   Higher caregiver apprehension about home medical care and lower overall satisfaction with home medical care were significantly associated with dying in a hospital. In addition, the home death group with apprehension about home medical care significantly rated higher overall satisfaction with home medical care than the hospital death group. Meanwhile, there was no difference in the overall satisfaction with home medical care between those with or without apprehension about home medical care in the home death group. Factors influencing overall satisfaction with home medical care in the home death group with apprehension about home medical care were: (i) being free from pain or symptoms (partial regression coefficient: 0.83); and (ii) fulfilled medical care service system (partial regression coefficient: 0.40).
Conclusion:   These results suggest that caregiver satisfaction with home medical care is an essential factor to enable home death of the patient despite the caregiver apprehension about home medical care.