Primary palliative care in Japan: needs estimation and projections – national database study with international comparisons

Objectives We aimed to estimate the potential population that requires palliative care, clarify the relationship between this population and the rate of ageing in Japan, and compare these trends with those of other countries.Design We used the national death registration data and population projections for Japan to estimate the population in need of palliative care using the minimal estimate method developed by Murtagh et al. Linear regression was used to create a model of mortality using sex, age at intervals of 5 years, and each major disease classification. We calculated the future population in need of palliative care until 2040 and compared the ageing data to those of other countries.Setting/participants All adults in Japan who died from 1980 to 2040 at intervals of 5 years.Results The number of people who might need palliative care from 2020 to 2040 will also increase linearly from 1 059 000 to 1 405 000. The proportion of Alzheimer’s, dementia and senility of the total need for palliative care will increase to 43.4% in 2040. The correlation coefficient between the proportion of the population in need of palliative care and the rate of ageing was 0.24 in developed countries.Conclusion In Japan, the population requiring palliative care in 2040 will be 1.5 times that in 2015. Palliative care needs to be provided urgently for people with Alzheimer’s disease, dementia and senility. The proportion of patients in need of palliative care may not change, although the number of patients requiring such gradually increases in developed countries

Eating-related distress and need for nutritional support of families of advanced cancer patients: A nationwide survey of bereaved family members

Background: A number of advanced cancer patients are suffering from physical and psychosocial burdens because of cancer cachexia, and these burdens also greatly impact on their family members and relationships between patients and family members. It is necessary to consider the psychosocial impact of cancer cachexia on family members of advanced cancer patients. Methods: A cross-sectional anonymous nationwide survey was conducted involving 925 bereaved family members of cancer patients who had been admitted to 133 inpatient hospices throughout Japan. Results: A total of 702 bereaved family members returned the questionnaires (response rate, 75.9%). Concerning eating-related distress, 'I served what the patient wanted without consideration of calories and nutritional composition' was highest (75.1%), and 'I tried making many kinds of meals for the patient' and 'I was concerned about planning meals for the patient every day' followed (63.0% and 59.4%, respectively). The top 5 of the 19 items were categorized as 'fighting back'. Need for nutritional support was high (72.2%), and need for explanations about the reasons for anorexia and weight loss of patients was moderate (41.4%). Explanatory factor analysis of eating-related distress identified the following four domains: (factor 1) feeling that family members forced the patient to eat to avoid death, (factor 2) feeling that family members made great efforts to help the patient eat, (factor 3) feeling that eating was a cause of conflicts between the patient and family members, and (factor 4) feeling that correct information was insufficient. Results of multiple logistic regression analysis showed that spouse, fair/poor mental status, factors 1, and 4 were identified as independent determinants of major depression (odds ratio [OR] 3.27 [95% confidence interval (CI) 1.24-8.60], P=0.02; OR 4.50 [95% CI 2.46-8.25], P<0.001; OR 2.51 [95% CI 1.16-5.45], P=0.02; OR 2.33 [95% CI 1.13-4.80], P=0.02, respectively). Conclusions: A number of family members of advanced cancer patients experienced high levels of eating-related distress and had a need for nutritional support

Trust in Physicians, Continuity and Coordination of Care, and Quality of Death in Patients with Advanced Cancer

Background: Provider-centered factors contribute to unexplained variation in the quality of death (QOD). The relationship between healthcare providers (HCPs) and patients, bidirectional communication, and consistency of longitudinal care planning are important provider-centered factors.Objective: To explore whether the level of trust in HCPs, the quality of continuity of care, and the level of coordination of care among home HCPs are associated with the QOD for cancer patients dying at home.Design: This study was a part of a nationwide multicenter questionnaire survey of bereaved family members of cancer patients evaluating the quality of end-of-life care in Japan.Setting/Subjects: We investigated 702 family members of cancer patients who died at home.Measurements: The QOD was evaluated from nine core domains of the short version of the Good Death Inventory (GDI). We measured five factors on a Likert scale, including patient and family trust in HCPs, continuity of care by home hospice and hospital physicians, and coordination of care among home hospice staff.Results: A total of 538 responses (77%) were obtained and 486 responses were analyzed. Trust in HCPs was correlated with the GDI score (r = 0.300–0.387, p < 0.001). The quality of care coordination was associated with the GDI score (r = 0.242, p < 0.001).Conclusions: Trust of the patient and family in home hospice staff, as well as coordination of care among hospice staff, are associated with the QOD for cancer patients dying at home

The Japan hospice and palliative evaluation study 4: a cross-sectional questionnaire survey

Abstract 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

Development and validation of clinical implementation methods for patient-reported outcomes in Japanese multi-center palliative care units

Abstract Background Patient-Reported Outcomes (PROs) are recommended for use in clinical oncology. However, they are not routinely used in professional palliative care practices in Japan. The reasons include both patient and healthcare provider factors and the implementation of PROs. This study aimed to develop and validate clinical implementation methods for PROs in Japanese palliative care units. Methods The Consolidated Framework for Implementation Research (CFIR) was conducted with four palliative care units in Japan. The study was conducted in six steps: unit assessment, development and implementation of a PRO implementation plan, PRO post-implementation survey and analysis of its utilization, a review of the PRO implementation process, creation of a PRO implementation method in a palliative care unit, and use and verification of the implementation method. Steps 1–5 were the development phase, and step 6 was the verification phase. Results Interviews were conducted with healthcare providers prior to PRO implementation. Intervention characteristics, patient needs in the palliative care unit, and factors related to the organization were identified as barriers. The implementation plan was developed, and the core members were selected. The implementation procedures were created in the above mentioned steps. PROs were used in the palliative care units. The same was true in the validation phase. Conclusions This study guided PROs in specialized palliative care unit in a clinical setting. The method was developed and validated for the implementation of PROs in the palliative care unit. In the PRO implementation process, it was important to assess the unit, address the barriers to implementation, and reduce the burden on healthcare providers. Furthermore, healthcare providers had to be supported by the champion, a person responsible for the implementation of PROs in the palliative care unit