Purpose: Advance care planning is an important component of quality palliative care. In Asian countries, few randomized clinical trials have been reported. This pilot randomized-controlled trial examined the effects of brief nurse intervention with visual materials on the goal-of-care preference, cardiopulmonary resuscitation (CPR) preference, and designation of a health care proxy.
Methods: This randomized clinical trial was performed from January to February 2018 on elderly Japanese patients with chronic disease. The patients were randomly assigned to a control group (brief nurse intervention using verbal descriptions) or intervention group (using visual materials). The primary endpoint was goal-of-care preference, and secondary outcomes included the following: (1) CPR preference, (2) presence of a designated health care proxy, (3) knowledge of CPR, and (4) readiness for advance care planning. Outcome measures were obtained at baseline and just after completion of the intervention.
Results: A total of 220 patients were enrolled (117 in the intervention group and 103 in the control group). All patients completed post-intervention measurement. There was no significant difference between the groups in any of the outcome measures, while <5% of the participants wanted life-prolonging care as the goal of care at the baseline. Before/after comparisons indicated that, in both groups, the number of participants who designated a health care proxy significantly increased (29% to 65% vs. 22% to 52%, respectively; p < 0.001 each); and the knowledge and readiness scores significantly increased. Moreover, there was a significant increase in the number of patients who did not want CPR (55% to 67% with a terminal condition, p = 0.003; 67% to 80% with a bedridden condition, p < 0.001) in the intervention group.
Conclusions: Brief nurse intervention increased documentation of a patient-designated health care proxy and improved the knowledge of CPR and patient readiness. Visual materials might help patients to imagine the actual situation regarding CPR.
CONTEXT: There has been a growing consensus that parenteral nutrition and hydration is to be forgone in terminally ill patients with cancer. However, it remains unclear what the beliefs and perceptions of parenteral nutrition and hydration by the family members are.
OBJECTIVES: To clarify their beliefs and perceptions and to examine the relationships between the factors of family members, their beliefs and perceptions, and their overall satisfaction with the care the patient received at the place of death.
METHODS: This study was performed as a part of the cross-sectional anonymous nationwide survey of the bereaved family members of cancer patients in Japan.
RESULTS: In total, 1001 questionnaires were sent and 610 were returned. Among these, 499 were analyzed. Regarding the prevalence of beliefs and perceptions about parenteral nutrition and hydration, 'When a patient cannot eat enough, parenteral hydration is needed' was the highest (87.7%), followed by 'The opinions of medical staff are important in the issue of parenteral nutrition and hydration', 'Parenteral hydration serves as a substitute for oral hydration', and 'If I were a patient and could not eat enough, parenteral hydration would be needed' (85.1, 81.0, and 80.0%, respectively). We extracted two concepts as follows: 'Belief that parenteral nutrition and hydration are beneficial' and 'Perceived need for parenteral nutrition and hydration'. They were not identified as independent determinants of overall care satisfaction.
CONCLUSION: This study showed that beliefs and perceptions about parenteral nutrition and hydration were important in the family members in palliative care.
Background: To improve the quality of advance care planning (ACP) in primary care, it is important to understand the frequency of and topics involved in the ACP discussion between patients and their family physicians (FPs).
Methods: A secondary analysis of a previous multicenter cross-sectional observational study was performed. The primary outcome of this analysis was the frequency of and topics involved in the ACP discussion between outpatients and FPs. In March 2017, 22 family physicians at 17 clinics scheduled a day to assess outpatients and enrolled patients older than 65 years who were recognized by FPs as having regular visits. We defined three ACP discussion topics: 1) future decline in activities of daily living (ADL), 2) future inability to eat, and 3) surrogate decision makers. FPs assessed whether they had ever discussed any ACP topics with each patient and their family members, and if they had documented the results of these discussions in medical records before patients were enrolled in the present study. We defined patients as being at risk of deteriorating and dying if they had at least 2 positive general indicators or at least 1 positive disease-specific indicator in the Japanese version of the Supportive and Palliative Care Indicators Tool.
Results: In total, 382 patients with a mean age of 77.4 ± 7.9 years were enrolled, and 63.1% were female. Seventy-nine patients (20.7%) had discussed at least one ACP topic with their FPs. However, only 23 patients (6.0%) had discussed an ACP topic with family members and their FPs, with the results being documented in their medical records. The topic of future ADL decline was discussed and documented more often than the other two topics. Patients at risk of deteriorating and dying discussed ACP topics significantly more often than those not at risk of deteriorating and dying (39.4% vs. 16.8%, p < 0.001).
Conclusion: FPs may discuss ACP with some of their patients, but may not often document the results of this discussion in medical records. FPs need to be encouraged to discuss ACP with patients and family members and describe the decisions reached in medical records.
OBJECTIVE: To describe the current status of withholding or withdrawal of life-sustaining interventions (LSI) for neonates in Japan and to identify physician- and institutional-related factors that may affect advance care planning (ACP) practices with parents.
STUDY DESIGN: A self-reported questionnaire was administered to assess frequency of withholding and withdrawing intensive care at the respondent's facility, the physician's degree of affirming various beliefs about end-of-life care that was compared to 7 European countries, their self-reported ACP practices and perceived barriers to ACP. Three neonatologists at all 298 facilities accredited by the Japan Society for Neonatal Health and Development were surveyed, with 572 neonatologists at 217 facilities responding.
RESULTS: At 76% of facilities, withdrawing intensive care treatments was "never" done, while withholding intensive care had been done "sometimes" or more frequently at 82% of facilities. Japanese neonatologists differed from European neonatologists regarding their degree of affirmation of 3 out of 7 queried beliefs about end-of-life care. In hospitals that were more likely to "sometimes" (or more often) withdraw treatments, respondents were less likely to affirm beliefs about doing "everything possible" or providing the "maximum of intensive care". Self-reported ACP practices did not vary between neonatologists based on their hospital's overall pattern of withholding or withdrawing treatments.
CONCLUSION: Among NICU facilities in Japan, 21% had been sometimes withdrawing LSI and 82% had been "sometimes" withholding LSI. Institutional treatment practices may have a strong association with physicians' beliefs that then affect end-of-life discussions, but not with self-reported ACP practices.
CONTEXT: The Cancer Control Act was passed in Japan in 2007, and various additional programs on palliative care have been implemented to improve quality of life and relieve pain and suffering in patients with cancer. However, how clinical settings have changed remains unclear.
OBJECTIVES: The primary aim of the present study was to determine changes in nurses' palliative care knowledge, difficulties, and self-reported practices between 2008 and 2015.
METHODS: This study was an analysis of two nationwide observational studies from 2008 to 2015. We conducted two questionnaire surveys for representative samples of nurses in designated cancer hospitals, community hospitals, and district nurse services. The measurements used the Palliative Care Knowledge Test (PCKT, range 1-100), the Palliative Care Difficulties Scale (PCDS, range 1-5), and the Palliative Care Self-Reported Practice Scale (PCPS, range 1-5). Comparisons were made using the nonpaired Student t-test and a multivariate linear regression model using two cohorts.
RESULTS: We analyzed survey results for 2707 nurses in 2008 and 3649 nurses in 2015. Significant improvements were seen in PCKT, PCDS, and PCPS total scores for nurses in every work location over the seven-year study period, with PCKT total scores of 53 vs. 65 (P < 0.001; effect size = 0.60), 47 vs. 55 (P < 0.001; effect size = 0.40), and 52 vs. 55 (P = 0.118; effect size = 0.13), PCDS total scores of 3.0 vs. 2.5 (P < 0.001; effect size = 0.76), 3.4 vs. 2.8 (P < 0.001, effect size = 0.91), and 3.2 vs. 2.9 (P < 0.001; effect size = 0.53), and PCPS total scores of 3.7 vs. 4.0 (P < 0.001; effect size = 0.13), 3.5 vs. 3.8 (P < 0.001; effect size = 0.42), and 3.8 vs. 4.0 (P < 0.011; effect size = 0.21) in designated cancer hospitals, community hospitals, and district nurse services, respectively.
CONCLUSION: Nurses' palliative care knowledge, difficulties, and self-reported practices improved over the seven-year study period, especially in terms of expert support in designated cancer hospitals and knowledge among nurses in designated cancer hospitals.
Cancer-related neuropathic pain (CNP) requires therapy involving multiple pharmaceuticals, including anticonvulsants and antidepressants; however, strong evidence to support this practice is limited. This study is a cross-sectional questionnaire-based survey. As the standard dose of adjuvant analgesics for CNP refractory to opioid therapy is not clear, the purpose of this study is to clarify the opinions of specialists about the usage of duloxetine and pregabalin for patients with CNP refractory to opioid therapy. Two hundred and eight certified palliative care specialists were surveyed and a total of 87 (42%) responses were analyzed. Twenty-five percent of specialists had considered increasing duloxetine doses up to 60 mg/day and 58% had considered increasing pregabalin doses up to 300 mg/day for CNP refractory to opioid therapy. However, 23% of the specialists succeeded in increasing duloxetine doses up to 60 mg/day and 17% in increasing pregabalin doses up to 300 mg/day, respectively.
CONTEXT: Understanding the prevalence and characteristics of primary care outpatients being at risk of deteriorating and dying may allow general practitioners (GPs) to identify them, and initiate end-of-life discussions.
OBJECTIVES: This study aimed to investigate the prevalence and characteristics of primary care outpatients being at risk of deteriorating and dying, as determined by the Supportive and Palliative Care Indicators Tool (SPICT™).
METHODS: A multicenter cross-sectional observational study was conducted at 17 clinics with 22 GPs. We enrolled all patients aged =65 years who visited the GPs in March 2017. We used the Japanese version of the SPICT™ to identify patients being at risk of deteriorating and dying. We assessed the demographic and clinical characteristics of enrolled patients.
RESULTS: In total, 382 patients with a mean age of 77.4 ± 7.9 years were investigated. Sixty-six patients (17.3%) had =2 positive general indicators or =1 positive disease-specific indicator in the SPICT-JP. Patients with dementia/frailty, neurological disease, cancer, and kidney disease showed a significantly elevated risk of deteriorating and dying, while patients with other specific disease did not. The patients at risk were significantly older and less likely to be living with family at home. They also had a higher Charlson Comorbidity Index score and a lower Palliative Performance Scale score.
CONCLUSION: Among primary care outpatients aged over 65 years, 17.3% were at risk of deteriorating and dying regardless of their estimated survival time, and many outpatients at risk were not receiving optimal multidisciplinary care.
PURPOSE: Although little improvement has been made in the survival rate among young cancer patients over recent decades, whether they have achieved a good death has never been systematically explored. We aimed to clarify whether young cancer patients (aged 20-39 years) have achieved a good death, and compare their achievement with that of middle-aged patients (aged 40-64 years).
METHODS: We analyzed combined data of three nationwide, cross-sectional surveys of families of cancer patients who died at inpatient hospices in Japan (2007-2014). We measured 10 core items of the Good Death Inventory (GDI) short-version on a 7-point scale, and calculated rates of "agree/absolutely agree" and the mean scores.
RESULTS: We analyzed 245 and 5140 responses of families of young and middle-aged patients, respectively. Less than 60% of families of young patients reported “agree/absolutely agree” regarding 9 items, which included “feeling that one’s life was completed” in 44 (18%; 95% confidence interval (CI) = 14–23%), “being independent in daily life” in 48 (20%; 95% CI = 15–25%), and “being free from physical distress” in 103 (42%; 95% CI = 36–48%) young patients. Young patients were significantly less likely to feel “one’s life was completed” (mean = 3.3 (standard deviation = 2.0) vs. 3.8 (1.9), respectively; effect size (ES) = 0.29; adjusted p value = 0.000) and “not being a burden to others” (3.1 (1.5) vs. 3.5 (1.6), respectively; ES = 0.24; adjusted p value = 0.010) than the middle-aged.
CONCLUSIONS: Overall, young cancer patients did not achieve a good death. Future efforts are needed to improve the quality of palliative care for young patients, focusing on psychosocial/spiritual suffering.
PURPOSES: Despite extensive debate on palliative sedation over the last few decades, no studies have explored longitudinal changes in physicians' opinion. Moreover, little is known about how physicians' opinions affect their practice. This study aimed to clarify (1) changes in palliative care specialists' opinions on palliative sedation and (2) the effects of these opinions on clinical practice.
METHODS: In 2000 and 2016, nationwide questionnaire surveys involving Japanese palliative care specialists were performed: measurement was based on agreement with opinions on palliative sedation. In 2016, the physicians reported their practice of continuous deep sedation (CDS) and answered their thoughts on what factors lead to a good death as factors potentially affecting their practice.
RESULTS: Of the 695 physicians enrolled in the 2016 survey, 469 responded (67%) and 417 were analyzed (60%). Compared with 54 physicians in 2000, the present respondents were more likely to consider palliative sedation is difficult to perform based on appropriate indications (ES = 0.84, P < 0.001), is unnecessary if conventional palliative care is performed sufficiently (ES = 0.30, P = 0.013), and may result in legal action (ES = 0.35, P = 0.003). The physicians’ opinions more strongly affected their practice than their characteristics or thoughts on good death components.
CONCLUSIONS: Recently, palliative care specialists in Japan tend to encounter more difficulties determining what conventional palliative care is and what palliative sedation is. They also fear legal ramifications. It is necessary to standardize methods of alleviating patients' suffering, to make CDS criteria clearer, and to create a legal basis that respects patients' rights at their end of life.
A 67-year-old woman was admitted to our hospital due to an acute onset of consciousness disturbance, aphasia and left hemiplegia. Computed tomography revealed multiple systemic infarctions, including brain, kidney and spleen. Transesophageal echocardiography revealed vegetations attached to the mitral valve leaflets, which was suspected to be the embolic source. Repeated blood cultures were negative, and advanced lung cancer was incidentally revealed by computed tomography. She was then diagnosed with nonbacterial thrombotic endocarditis (NBTE) based on the overall clinical picture. Subsequently, extensive systemic embolization repeatedly occurred, but she eventually died 25 days after admission. The autopsy proved NBTE and advanced-stage lung adenocarcinoma.
CONTEXT: Hospital-based palliative care consultation teams (PCCTs) are rapidly being disseminated throughout Japan. The roles of PCCTs have changed over the past decade, particularly with the introduction of a modified national cancer care act to promote early palliative care and integrated oncology and palliative care.
OBJECTIVES: This study aimed to develop a consultation team standard for hospital-based palliative care in Japan.
METHODS/DESIGN: We developed a provisional standard based on literature review, and used a modified questionnaire-based Delphi method. Our Delphi panel comprised 20 experts selected from all relevant disciplines.
RESULTS: All experts selected responded to the surveys over all rounds, and 14 of the 20 participated in the panel meeting. In the first-round, 79 of 109 statements were judged to be appropriate, and 30 of 109 led to disagreements. 16 of those 30 statements underwent minor revision, 1 was divided into two statements, and 13 remained unchanged. We then added 6 statements based on a discussion among participants and authors. Additionally, based on comments from an external reviewer, we revised the standard, resulting in 4 statements being combined into 2 for a new total of 114 statements. In the second-round, 108 of 114 statements were judged to be appropriate, and in the third-round, none of the 6 controversial statements were judged to be appropriate. The final version comprised 108 statements.
CONCLUSION: We developed a standard for PCCTs in Japanese cancer hospitals. This standard provides a useful guide for clinical activities and a tool to evaluate quality of palliative care.
BACKGROUND: Few data are available on bereaved family members' perspective on the frequency of symptoms and degree of distress among terminal patients with cancer.
METHODS: We sent a questionnaire to 1472 bereaved family members of terminal patients with cancer in 20 general hospitals. The questionnaire asked them (1) to indicate which symptoms the patients had, (2) to rate on a 4-point scale the extent to which the symptom was distressing, as follows: 1 = not distressing, 2 = slightly distressing, 3 = quite distressing, and 4 = very distressing at the point of 2 weeks before the patient had died.
RESULTS: We analyzed 805 questionnaires for this study. Anorexia was the commonest symptom among terminal patients with cancer experienced by bereaved family members, followed by somnolence, weight loss, fatigue, and pain. Anorexia was the most distressing symptom among terminal patients with cancer experienced by bereaved family members, followed by weight loss, pain, edema, and dyspnea.
CONCLUSIONS: Anorexia and weight loss were frequent symptoms and bereaved family members felt very distressing. Furthermore, there are not means of effective treatment now. Thus, we think that further study in this field is necessary.
CONTEXT: According to the International Observatory on End of Life Care, the level of pediatric palliative care in Japan is Level 2 (capacity building) and the current status of palliative care for children in Japan has not been clarified.
OBJECTIVES: To clarify the availability and utilization of specialist palliative care services among children with life-threatening conditions in Japan.
METHODS: A questionnaire was administered to assess the availability of specialist palliative care services among children with life-threatening conditions. All 427 certified regional cancer centers having hospital-based adult palliative care teams, 15 certified children's cancer centers having pediatric palliative care teams, and 368 medical institutions having a certified palliative care unit, were surveyed.
RESULTS: Fifteen to twenty-one percent of adult palliative care teams and more than 90% of pediatric palliative care teams had experience providing palliative care to children with cancer. In contrast, only 2%-3% of adult palliative care teams and 15% of pediatric palliative care teams had experience providing care for the non-cancer population. An estimated 12% of children with cancer in Japan used hospital-based palliative care teams in 2015. Eight children used a palliative care unit in 2015 and of those, seven (88%) had a solid tumor. An estimated 1.3% of children with cancer who died in Japan used a palliative care unit.
CONCLUSION: An estimated 12% of children with cancer in Japan used hospital-based palliative care teams and an estimated 1.3% of children with cancer who died in Japan used a palliative care unit in 2015.
BACKGROUND: Constant evaluation is important for maintaining and improving the quality of end-of-life care. We therefore conduct the fourth Japan Hospice and Palliative Evaluation Study (J-HOPE4) as a continuous evaluation study. In this present paper, we describe the design of J-HOPE4. The main purposes of J-HOPE4 are as follows:1) to evaluate the processes, structures, and outcomes of palliative care acute hospitals, palliative care units, and home hospice services; 2) to examine bereaved family members' self-reported psychosocial conditions, such as grief and depression as bereavement outcomes;3) to provide data to ensure and improve the quality of care provided by participating institutions via feedback based on the results from each institution; and 4) provide clinical and academic information concerning the implications of various issues in palliative care by conducting additional studies.
METHODS: We will conduct a cross-sectional, anonymous, self-reported questionnaire survey. In total, 190 institutions will participate in this study, meaning that 12,000 bereaved family members will be sent a questionnaire.
DISCUSSION: This is one of the largest cross-sectional surveys involving hospice and palliative care, both in Japan and worldwide. Because this study will have a large sample size, the findings are expected to be generalizable to other settings.
Objective: To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists.
Design: Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously.
Results: In total, 186 paediatric neurologists were analysed. If the patient’s prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as ‘do not attempt resuscitation’ orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients’ families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients’ families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient’s prognosis was >1 year.
Conclusion: About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient's prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.
BACKGROUND: Terminally ill patients with cancer and their families may have a sense of abandonment when they are referred to hospice. This study aimed to clarify the prevalence of families' sense of abandonment, explore the association between the sense of abandonment and the oncologists' behaviors, and investigate the association between the sense of abandonment and the families' depression and complicated grief.
PATIENTS AND METHODS: This was part of a nationwide self-reported questionnaire survey of bereaved families of patients with cancer who died in inpatient hospices. We sent questionnaires to 947 bereaved families of patients with cancer who died in 133 certified hospices between May 2012 and January 2014.
RESULTS: Among 707 responses obtained, a total of 189 (26.7%) families felt abandoned. The factors significantly associated with a greater sense of abandonment were that the oncologists said there was nothing more to do for the patient, the patient's age of less than 60 years, and being the patient's spouse. The factors significantly associated with a lower sense of abandonment were that the oncologists reassured the patients that they had received the best anticancer treatment, that the oncologists recommended hospices as one potential choice rather than mandatory, and that a palliative care team provided care. Families with a sense of abandonment had higher scores on the Patient Health Questionnaire-9 (p = .096) and Brief Grief Questionnaire (p < .001).
CONCLUSION: Approximately a quarter of bereaved families had a sense of abandonment, which was associated with a higher rate of complicated grief. Oncologists may reduce the sense of abandonment by reassuring that the patients received the best anticancer treatment, recommending hospices as a potential choice rather than as mandatory, and by not saying there is nothing that can be done for the patients.
IMPLICATIONS FOR PRACTICE: This self-reported questionnaire study investigated the prevalence of families' feelings of abandonment when they were referred to hospice care, focusing on the association of sense of abandonment and the behavior of their physicians. Nearly a quarter of families felt abandoned by the referral to hospice, and the behavior of some oncologists was associated with the sense of abandonment.
BACKGROUND: Identifying patients who require palliative care approach is challenging for family physicians, even though several identification tools have been developed for this purpose.
OBJECTIVE: To explore the prevalence and characteristics of family practice patients who need palliative care approach as determined using Supportive and Palliative Care Indicators Tool (SPICT™, April 2015) in Japan.
DESIGN: Single-center cross-sectional study.
SETTING/SUBJECTS: We enrolled all patients =65 years of age who visited the chief researcher's outpatient clinic in October 2016.
MEASUREMENTS: We used Japanese version of SPICT (SPICT-J) to identify patients who need palliative care approach. We assessed patients' backgrounds and whether they had undergone advance care planning with their family physicians.
RESULTS: This study included 87 patients (61 females) with a mean age of 79.0 ± 7.4 years. Eight patients (9.2%) were identified as needing palliative care approach. The mean age of patients who needed this approach was 82.3 ± 8.3 years and main underlying conditions were heart/vascular disease (37.5%), dementia/frailty (25.0%), and respiratory disease (12.5%). Only two of eight patients identified as needing palliative care approach had discussed advance care planning with their family physicians.
CONCLUSIONS: In family practice, 9.2% of outpatients =65 years of age were identified as needing palliative care approach. Family physicians should carefully evaluate whether outpatients need palliative care approach.
This study aimed to develop a scale focusing on knowledge and attitudes toward palliative care and end-of-life care for nurses and to confirm the scale's validity and reliability. We conducted a self-administered questionnaire survey with 1745 nurses of 10 hospitals all over Japan. We also examined the test-retest reliability of items for 205 of the nurses, 2 weeks after the first survey was completed. We used item-response theory, factor analysis, and intraclass correlation coefficients. The response rate was 44.5% (n = 762). Ninety items in 9 domains about knowledge of palliative care and end-of-life care were selected by using item-response theory. For knowledge items, Kuder-Richardson-20 was 0.85, and intraclass correlation coefficient was 0.84 in all domains. Ten items in 3 domains about attitudes toward palliative care and end-of-life care were selected by using exploratory factor analysis. For attitude items, Cronbach's a coefficient was .90, and intraclass correlation coefficient was 0.80 in all domains. The developed scale, named the End-of-Life Nursing Education Consortium—Japan Core Quiz, has sufficient validity and reliability. This scale may contribute to assessing the effectiveness of the End-of-Life Nursing Education Consortium—Japan Core Curriculum Nursing Education Program in Japan.
BACKGROUND: Geriatric health service facilities (GHSFs) play important roles as intermediate care facilities for elderly individuals temporarily when they need rehabilitation before returning home. However, the number of residents spending their end-of-life (EOL) period in such facilities is increasing. To improve the quality of EOL care, end-of-life discussions (EOLDs) are recommended by some guidelines and studies.
AIM: This study aimed to clarify the current practice of EOL care and EOLDs in GHSFs in Japan.
METHODS: We conducted a nationwide cross-sectional survey by mailing questionnaires about EOL care and EOLDs to 3437 GHSF managing directors. The questionnaire was developed through a literature review and discussion among the researchers and experts. Descriptive statistics summarized the data. We also analyzed the factors related to GHSFs conducting EOLDs using Fisher exact tests.
RESULTS: The response rate was 20.7% (713 of 3437). Among the respondents, 75.2% (536 of 713) of GHSFs provided EOL care and 73.1% (521 of 713) conducted EOLDs. The most common reasons for difficulties in providing EOL care included the lack of EOL education for nurses and care workers, and their fear about caring for dying residents. End-of-life discussions were mostly initiated after the deterioration of a resident's condition and were conducted with families by physicians. Statistically significant factors of GHSFs conducting EOLDs included providing EOL education for nurses and care workers, availability of private room for critically ill residents, emergency on-call doctors, and EOL care.
CONCLUSION: Adequate practical staff education programs for EOL care including EOLDs may be crucial for quality of end-of-life care in aged care facilities.
OBJECTIVE: Complicated grief (CG) is considered a distinctive symptom from other bereavement-related mental impairments such as major depressive disorder (MDD). CG and MDD may appear independently or co-morbidly; however, the factors associated with each situation are unclear.
METHODS: We conducted a nationwide cross-sectional questionnaire survey involving bereaved family members of cancer patients in 175 institutions. The following items were included in the questionnaires to assess the prevalence of CG and MDD, and the following associated factors: demographic characteristics; bereaved family depression (Patient Health Questionnaire-9) and grief status (Brief Grief Questionnaire); structure and process of care (Care Evaluation Scale); overall care satisfaction; and achievement of a good death (Good Death Inventory).
RESULTS: A total of 9,123 questionnaires were returned. The prevalence of CG and MDD was 14% and 17%, respectively. Additionally, 58% of the possible CG participants showed co-morbid symptoms. Common factors that showed significant association with either independent or co-morbid symptoms of CG and MDD were pre-existing mental impairment; belief in the survival of the soul after physical death; unpreparedness for the death; poor physical or psychological health status; and the belief that the deceased felt themselves as a burden to others (all p <0.05). The duration of bereavement did not remain significant after multivariate analysis.
CONCLUSIONS: While there were many common factors associated with both CG and MDD independently, few participants exhibited associations to both CG and MDD. Therefore, CG and MDD can be considered as distinctive symptoms, which frequently appear co-morbidly.