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Background: Palliative care is insufficiently integrated in the continuum of care for older people. It is unclear to what extent healthcare policy for older people includes elements of palliative care and thus supports its integration. Aim: (1) To develop a reference framework for identifying palliative care contents in policy documents; (2) to determine inclusion of palliative care in public policy documents on healthcare for older people in 13 rapidly ageing countries. Design: Directed documentary analysis of public policy documents (legislation, policies/strategies, guidelines, white papers) on healthcare for older people. Using existing literature, we developed a reference framework and data extraction form assessing 10 criteria of palliative care inclusion. Country experts identified documents and extracted data. Setting: Austria, Belgium, Canada, Czech Republic, England, Japan, Mexico, Netherlands, New Zealand, Singapore, Slovenia, South Korea, Spain. Results: Of 139 identified documents, 50 met inclusion criteria. The most frequently addressed palliative care elements were coordination and continuity of care (12 countries), communication and care planning, care for family, and ethical and legal aspects (11 countries). Documents in 10 countries explicitly mentioned palliative care, nine addressed symptom management, eight mentioned end-of-life care, and five referred to existing palliative care strategies (out of nine that had them). Conclusions: Health care policies for older people need revising to include reference to end-of-life care and dying and ensure linkage to existing national or regional palliative care strategies. The strong policy focus on care coordination and continuity in policies for older people is an opportunity window for palliative care advocacy. [ABSTRACT FROM AUTHOR]

Background: Family members can support advance care planning conversations. However, how family involvement in advance care planning operates to achieve goal-concordant care remains unclear. Aim: To explore how family involvement impacts the process of advance care planning for advanced cancer patients and their family members to achieve goal-concordant care in Japan. Design: Qualitative study incorporating semi-structured in-depth interviews with thematic analysis informed by Family Systems Theory. Setting/participants: Medical oncology departments at two tertiary hospitals in Japan. A purposive sample of 13 advanced cancer patients, 10 family members and 9 healthcare professionals who cared for them. Results: Twenty-five interviews were conducted, comprising 7 dyads of patients and their family members and 18 individual interviews. Four themes were identified: characteristics of patients and family members and their views on illness and advance care planning; family context and communication; interactions with healthcare professionals and societal and cultural influences; and family members' acceptance, preparation and confidence. Family involvement was observed as being variable at an individual level and also across generations. Family members provided patients with the instrumental and emotional support that facilitated the advance care planning process. Family involvement enabled family members to better prepare for realising patients' wishes. It increased family members' confidence in surrogate decision-making. Conclusions: Two mechanisms of how family involvement may enable goal-concordant care were identified: family members' support provision and their preparation for realising patients' wishes. Healthcare professionals should assess family's readiness to engage in advance care planning, and the time required to prepare them for the process. [ABSTRACT FROM AUTHOR]

Background: Few studies have developed automatic systems for identifying social distress, spiritual pain, and severe physical and phycological symptoms from text data in electronic medical records. Aim: To develop models to detect social distress, spiritual pain, and severe physical and psychological symptoms in terminally ill patients with cancer from unstructured text data contained in electronic medical records. Design: A retrospective study of 1,554,736 narrative clinical records was analyzed 1 month before patients died. Supervised machine learning models were trained to detect comprehensive symptoms, and the performance of the models was tested using the area under the receiver operating characteristic curve (AUROC) and precision recall curve (AUPRC). Setting/participants: A total of 808 patients was included in the study using records obtained from a university hospital in Japan between January 1, 2018 and December 31, 2019. As training data, we used medical records labeled for detecting social distress (n = 10,000) and spiritual pain (n = 10,000), and records that could be combined with the Support Team Assessment Schedule (based on date) for detecting severe physical/psychological symptoms (n = 5409). Results: Machine learning models for detecting social distress had AUROC and AUPRC values of 0.98 and 0.61, respectively; values for spiritual pain, were 0.90 and 0.58, respectively. The machine learning models accurately identified severe symptoms (pain, dyspnea, nausea, insomnia, and anxiety) with a high level of discrimination (AUROC > 0.8). Conclusion: The machine learning models could detect social distress, spiritual pain, and severe symptoms in terminally ill patients with cancer from text data contained in electronic medical records. [ABSTRACT FROM AUTHOR]

Background: Continuous deep sedation is ethically controversial with respect to whether it shortens a patient's life. Aim: To examine whether continuous deep sedation shortens patient survival from the day of Palliative Performance Scale decline to 20 (PPS20). Design: A part of a multicenter prospective cohort study (EASED study). Setting/participants: We recruited consecutive adult patients with advanced cancer admitted to 23 participating palliative care units in 2017 in Japan. We compared survival from PPS20 between those who did and did not receive continuous deep sedation. Continuous deep sedation was defined as the continuous administration of sedative medication with the intention to keep a patient continuously unconscious to alleviate otherwise uncontrollable symptoms, but the dose of sedatives was adjusted to achieve adequate symptom relief for each patient. The propensity score-weighting method was used to control for potential confounders, and five sensitivity analyses were performed. Results: A total of 1926 patients were enrolled. Patients discharged alive were excluded, and we analyzed 1625 patients of whom 156 (9.6%) received continuous deep sedation. Median survival from PPS20 of 1625 patients was 81 h (95% CI: 77–88). The RASS scores decreased to ⩽−4 was 66% at 24 h. Continuous deep sedation was not associated with a significant survival risk (adjusted hazard ratio: 1.06, 95% CI: 0.85–1.33). All sensitivity analyses, including continuous deep sedation defined as the RASS score was ⩽−4 achieved the essentially the same results. Conclusions: Continuous deep sedation with careful dose adjustment was not associated with shorter survival in the last days of life in patients with advanced cancer. [ABSTRACT FROM AUTHOR]

Background: The relationship between advance care planning and religious beliefs, which are important for palliative care, is controversial in Western countries and has not been verified in Asian countries. Aim: To investigate the association between advance care planning discussions and religious beliefs in Japan. Design: A nationwide survey conducted in 2016 using a quota sampling method to obtain a representative sample of Japan's general population. Setting/participants: We analyzed responses from 3167 adults aged 20–84 years (mean age ± standard deviation, 50.9 ± 16.8 years). The outcome was measured by asking whether the respondents had ever discussed advance care planning, and the main exposure by whether they had any religious beliefs or affiliations, and if so, their degree of devoutness. We analyzed religious beliefs, affiliations, and devoutness in relation to the occurrence of discussions using multivariable logistic regression models adjusted for possible sociodemographic covariates. Results: Compared with respondents without, those with religious beliefs had significantly higher odds of having had discussions (adjusted odds ratio: 1.45, 95% confidence interval: 1.22–1.73). The devoutness of religious belief was proportional to the propensity of the occurrence of discussions (p for trend < 0.001). In addition, Buddhists and Christians had higher odds of having had discussions than did nonbelievers. Conclusion: The results suggest that holding religious beliefs, especially in Japanese Buddhism and Christianity, facilitates advance care planning discussions among Japanese adults, and thus, may help health-care providers identify those prioritized for facilitating engagement in advance care planning, especially in palliative and spiritual care settings. [ABSTRACT FROM AUTHOR]

Background: Some factors associated with spiritual well-being in dying patients have previously been reported. However, there has been no cross-cultural study comparing factors related to spiritual well-being. The current investigation may shed light on this under-investigated area through a comparison of diverse factors. Aim: We aimed to (1) examine factors associated with spiritual well-being in the last days and (2) compare those factors across three East Asian countries. Design: This is an international multicenter prospective cohort study. Setting/participants: Newly admitted inpatients with far advanced cancer in palliative care units in Japan, Korea and Taiwan were enrolled. Each patient was classified into one of two groups based on spiritual well-being score in the last days of life. Univariate and multivariate analyses were performed to identify the factors related to better spiritual well-being score in each country. Results: A total of 1761 patients treated at 37 palliative care units from January 2017 to September 2018 were analyzed. Seven variables were significant in Japan, three in Korea, and five in Taiwan. "Good death scale [acceptance]," "fatigue" and "expressed wish for hastened death" were unique in Japan. "Visit from a pastoral care worker within 48 h of death" was unique in Korea. "Patient's preferences for place of death," "dyspnea" and "continuous deep sedation" were unique in Taiwan. Conclusions: This study found novel factors related to spiritual well-being in the last days of life, several of which differed according to country. Recognition of factors associated with spiritual well-being can improve the quality of palliative care. [ABSTRACT FROM AUTHOR]

Background: Studies on the appropriate use of urinary catheters for cancer patients at the end of life are limited. Aim: To clarify the differences among institutions in the prevalence of and indications for urinary catheterization of advanced cancer patients at palliative care units. Design: Pre-planned secondary analysis of a multicenter, prospective cohort study; East-Asian collaborative cross-cultural Study to Elucidate the Dying process (EASED). Setting/participants: This study enrolled consecutive advanced cancer patients admitted to palliative care units between January and December 2017. The final study group comprised 1212 patients from 21 institutions throughout Japan. Results: Out of the 1212 patients, 380 (31.4%; 95% confidence interval, 28.7%–34.0%) underwent urinary catheterization during their palliative care unit stay, and the prevalence of urinary catheterization in patients who died at palliative care units by institution ranged from 0.0% to 55.4%. When the 21 participating institutions were equally divided into three groups according to the institutional prevalence of catheterization, patients with difficulty in moving safely, exhaustion on movement, and restlessness or agitation were more likely to be catheterized in institutions with a high prevalence of catheterization than in those with a low or moderate prevalence (p < 0.008, p = 0.008, and p < 0.008, respectively). Conclusion: This study revealed that the institutional prevalence of urinary catheterization in advanced cancer patients at palliative care units widely varied. Further studies are needed to establish the appropriate use of urinary catheters, especially in patients with difficulty in moving safely, exhaustion on movement, and restlessness or agitation. [ABSTRACT FROM AUTHOR]

Background: Although advance care planning discussions are increasingly accepted worldwide, their ideal timing is uncertain and cultural factors may pertain. Aim: To evaluate timing and factors affecting initiation of advance care planning discussions for adult patients in Japan and Taiwan. Design: Mixed-methods questionnaire survey to quantitatively determine percentages of patients willing to initiate advance care planning discussions at four stages of illness trajectory ranging from healthy to undeniably ill, and to identify qualitative perceptions underlying preferred timing. Setting/participants: Patients aged 40–75 years visiting outpatient departments at four Japanese and two Taiwanese hospitals were randomly recruited. Results: Overall (of 700 respondents), 72% (of 365) in Japan and 84% (of 335) in Taiwan (p < 0.001) accepted discussion before illness. In Japan, factors associated with willingness before illness were younger age and rejection of life-sustaining treatments; in Taiwan, older age, stronger social support, and rejection of life-sustaining treatments. Four main categories of attitudes were extracted: the most common welcomed discussion as a wise precaution, responses in this first category outnumbered preference for postponement of discussion until imminent end of life, acceptance of the universal inevitability of death, and preference for discussion at healthcare providers' initiative. Conclusion: The majority of patients are willing to begin discussion before their health is severely compromised; about one out of five patients are unwilling to begin until clearly facing death. To promote advance care planning, healthcare providers must be mindful of patients' preferences and factors associated with acceptance and reluctance to initiate advance care planning. [ABSTRACT FROM AUTHOR]

Background: Avoiding inappropriate care transition and enabling people with chronic diseases to die at home have become important health policy issues. Availability of palliative home care services may be related to dying at home. Aim: After controlling for the presence of hospital beds and primary care physicians, we examined the association between availability of home palliative care services and dying at home in conditions requiring such services. Design: Death certificate data in Japan in 2016 were linked with regional healthcare statistics. Setting/participants: All adults (18 years or older) who died from conditions needing palliative care in 2016 in Japan were included. Results: There were 922,756 persons included for analysis. Malignant neoplasm (37.4%) accounted for most decedents, followed by heart disease including cerebrovascular disease (31.4%), respiratory disease (14.7%) and dementia/Alzheimer's disease/senility (11.5%). Of decedents, 20.8% died at home or in a nursing home and 79.2% died outside home (hospital/geriatric intermediate care facility). Death at home was more likely in health regions with fewer hospital beds and more primary care physicians, in total and per condition needing palliative care. Number of home palliative care services was negatively associated with death at home. The adjustment for home palliative care services disappeared in heart disease including cerebrovascular disease and reversed in respiratory disease. Conclusion: Specialised home palliative care services may be suboptimal, and primary care services may serve as a key access point in providing baseline palliative care to people with conditions needing palliative care. Therefore, primary care services should aim to enhance their palliative care workforce. [ABSTRACT FROM AUTHOR]

Background: Changes in activities of daily living in cancer patients may predict their survival. The Palliative Prognostic Index is a useful tool to evaluate cancer patients, and adding an item about activities of daily living changes might improve its predictive value. Aim: To clarify whether adding an item about activities of daily living changes improves the accuracy of Palliative Prognostic Index. Design: Multicenter prospective cohort study. Setting: A total of 58 palliative care services in Japan. Participants: Patients aged >20 years diagnosed with locally extensive or metastatic cancer (including hematological neoplasms) who had been admitted to palliative care units, were receiving care by hospital-based palliative care teams, or were receiving home-based palliative care. Palliative care physicians recorded clinical variables at the first assessment and followed up patients 6 months later. Results: A total of 2425 subjects were recruited and 2343 of these had analyzable data. The C-statistic of the original Palliative Prognostic Index was 0.801, and those of modified Palliative Prognostic Indices ranged from 0.793 to 0.805 at 3 weeks. For 6-week survival predictions, the C-statistic of the original Palliative Prognostic Index was 0.802, and those of modified Palliative Prognostic Indices ranged from 0.791 to 0.799. The weighted kappa of the original Palliative Prognostic Index was 0.510, and those of modified Palliative Prognostic Indices ranged from 0.484 to 0.508. Conclusion: Adding items about activities of daily living changes to the Palliative Prognostic Index did not improve prognostic value in advanced cancer patients. [ABSTRACT FROM AUTHOR]

Background: The number of HIV-infected patients who require palliative or end-of-life care is increasing, and the status of end-of-life care for HIV patients with malignancies is unclear. Aim: This study aimed to evaluate the end-of-life care provided to HIV patients with malignancies in Japan. Design: National cross-sectional questionnaire-based survey. Setting/participants: Questionnaires were delivered to the medical staff of 378 regional core hospitals/core hospitals for AIDS and 285 palliative care units in Japan. Data were collected between August and October 2013. Results: Overall, 226 regional core hospitals/core hospitals for AIDS (59.8%) responded. A total of 55 institutions (24.3%) provided end-of-life care to HIV patients with malignancies. Regarding the place of death of the patients, 69.1% died at the institution whereas 18.2% were transferred to palliative care units. The requests of 16 (29.1%) institutions to transfer patients to palliative care units were rejected. Of the 378 palliative care units, 179 (62.8%) responded. While 13 palliative care units (4.6%) provided care to hospitalized HIV patients with malignancies, 20 (11.2%) refused to accept these patients for treatment because of a lack of experience in treating these patients and a lack of knowledge regarding HIV infection. Conclusion: Our findings suggest that in Japan, HIV patients with malignancies have difficulties obtaining hospitalization at a palliative care unit, which is likely due to a lack of experience among the professionals in treating such patients as well as a lack of knowledge about HIV. [ABSTRACT FROM AUTHOR]

The article discusses a study to evaluate the cross-cultural development of a stand-alone European Organization for Research and Treatment of Cancer (EORTC) measure of spiritual well being for palliative care patients with cancer. The study found that a provisional 36-item measure ready for Phase IV field-testing, the EORTC QLQ-SWB36 has been developed, with the items are comprehensible across languages and cultures. The need for Phase IV testing is highlighted.

The article reports a study which investigated the patient-perceived usefulness and practical obstacles of using the patient-held record (PHR) specifically designed for palliative care patients. The results indicate that the patients perceived the PHR as useful in facilitating communication and also for understanding medical conditions and treatments, and facilitating end-of-life discussion.For wide-spread implementation, resolving the obstacles is required.

In Japan, the first government-approve d hospice (GAH) and palliative care unit was established and commence d operations in 1990, and hospice medical care was made eligible for health insurance coverage. By 31 December 2000, the number of GAH institutions had increased to 86 (1590 beds). The ratio of hospices to population in Japan is currently approximately 1:1.5 million, with an average of one hospice bed for approximately every 80 000 people. This study of GAH institutions reports a survey conducted to determine the number of deaths (hospice unit and home) of GAH cancer patients, and to determine the servicing status of hospice home care for the period 1995 through 2000. The place of death of the patients cared for by GAHs in 2000 were: hospice units 97.7% and home 2.3%. GAH patient deaths (both inpatient and at home) in 2000 was 2.6% of the total number of cancer patients' deaths, an increase of 3.8-fold since 1995. Of the total number of GAH institutions, 62% are engaged in home care services and 91% offer hospice care by hospice-assigned doctors. In addition, 72% offer team care with nurses based at Home Care Agencies. In order for the hospice (including home care service) to become established in a way most appropriate to each region of Japan, GAH institutions must assume significant promotional roles in their respective regions. One of the goals and assignments of establishing medical service with hospice home care in Japan is to develop the systematic care programs of GAH institutions, which include home care service in addition to the already established hospice unit and outpatient services. [ABSTRACT FROM AUTHOR]

Although satisfaction is an important outcome of medical care, there are no validated tools to quantify family satisfaction with hospital-based palliative care. In this nationwide postal survey, an instrument to measure informal carer satisfaction with an inpatient palliative care service was validated. A 60-item questionnaire was mailed to 1344 bereaved people who had lost their family members at 50 palliative care units in Japan, and 850 responses were analysed (response rate=64%). The reliability, construct validity, and convergent validity of the scale were examined after the responses were randomly divided into two groups: a training set used in the development phase (n=500) and a testing set used in the validation phase (n=350). The number of scale items was reduced from 50 to 34 through psychometric techniques in the development phase. In the testing sample, the overall Cronbach's coefficient alpha for the final 34-item scale was 0.98. A factor analysis revealed that the scale consisted of seven subcategories: Nursing Care, Facility, Information, Availability, Family Care, Cost, and Symptom Palliation. The total score of the scale was significantly correlated with the degree of global satisfaction of the bereaved (Spearman's ρ=0.78). In conclusion, this 34-item scale, the Satisfaction Scale for Family Members Receiving Inpatient Palliative Care (Sat-Fam-IPC), has acceptable psychometric properties and would be a useful tool to measure carer satisfaction with an inpatient palliative care service. [ABSTRACT FROM AUTHOR]

In order to explore the implementation of bereavement care in hospice/palliative care settings in Japan, a self-administered questionnaire was sent to all 54 government-approved hospice/palliative care units (PCUs) in May of 1999 (recovery rate 93%). Results showed that bereavement follow-up is performed in 37 institutes (74%) and memorial cards and services are most frequently provided. Memorial cards are provided mainly by nurses, and memorial services involve many health care professionals as well as volunteers. Religious workers tended to be involved in memorial services and social group meetings. Individually oriented interventions such as telephone contacts, personal visits and personal counselling were reportedly used less often. The need for individual-oriented programmes was recognized, and many institutes were considering the expansion of their programmes to include them. However, the difficulties of implementing such care at hospice/PCUs were also raised. Two socio-cultural factors possibly affecting bereavement care in Japan, namely, the roles of family and religious (Buddhist) ceremonies were discussed. It was pointed out that the spirit of bereavement care may be embodied in existing religious ceremonies. We conclude that it is necessary to develop bereavement care programmes based on common, basic hospice care tenets while making full use of existing local resources and taking into account regional values. [ABSTRACT FROM AUTHOR]