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BackgroundConstant 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.MethodsWe 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.DiscussionThis 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.

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.

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Objectives: To elucidate changes in depressive symptoms after bereavement and the impact of pre-loss resilience on such changes and on the extent of complicated grief and posttraumatic growth. Methods: Prospective cohort surveys were provided to family caregivers of patients with cancer in four palliative care units (PCUs) before and after bereavement. Preloss Connor-Davidson Resilience Scale scores, pre-and post-loss Patient Health Questionnaire-9 scores, post-loss Brief Grief Questionnaire scores, and the expanded Posttraumatic Growth Inventory scores were determined.Results: Out of 186 bereaved family caregivers, 71 (38.2%) responses were analyzed, among which 47% pre-loss and 15% post-loss responses suggested to be a high risk for major depressive disorder (MDD). Approximately 90% of family caregivers at a high risk for post-loss MDD were already at a high risk for pre-loss MDD.

Objective Research on the association between circumstances of death in advanced cancer patients and depression in their bereaved caregivers is limited. Methods A longitudinal study was performed on patients admitted to 21 inpatient hospices/palliative care units (PCUs) in Japan. Patient symptoms were assessed at admission and in the last 3 days of life. Data on distressing events (unexpected death, bleeding) and received treatments (morphine prescriptions, continuous deep sedation, cardiopulmonary resuscitation) were also obtained. Bereaved caregiver depression was assessed 6 months or more after patient death via mail survey using the Patient Health Questionnaire‐9 (PHQ‐9). A multivariable logistic regression analysis was used to explore variables predicting bereaved caregiver depression. Results Of 1324 deceased patient–bereaved caregiver dyads, data were finally analyzed for 711 dyads. The proportion of probable depression (PHQ‐9 scores ≥10) in bereaved caregivers was 13.6% (91/671; 95% confidence interval: 11.0–16.2). The multivariable logistic regression analysis showed that patient hyperactive delirium at PCU admission was significantly associated with the development of bereaved caregiver depression (odds ratio: 2.2, 95% CI: 1.2–3.8). Bereaved caregiver perceived low social support (OR: 4.7, 95% CI: 2.2–10.0) and low preparedness for death (OR: 4.5, 95% CI: 2.6–7.8) were also significantly associated with the development of depression. Other patient and bereaved caregiver variables had no association with depression. Conclusions Hyperactive delirium in terminally ill cancer patients was associated with bereaved caregiver depression. The development of effective strategies to reduce delirium‐related agitation and to provide educational interventions for caregivers may be needed.

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Background: Toward the individualized care of terminally ill patients with dyspnea (''terminal dyspnea''), it is essential to identify individualized goals of care (GOC) to achieve an acceptable balance between dyspnea intensity and communication capacity. Objective: To explore preferences for individualized GOC for terminal dyspnea, and factors associated with the preferences. Design: A nationwide cross-sectional survey. Setting/Subjects: In total, 1055 bereaved families of cancer patients admitted to 167 inpatient hospices in Japan. Measurements: Preferences for individualized GOC for terminal dyspnea to achieve an acceptable balance between dyspnea intensity and communication capacity, should individuals experience continuous moderate or severe/overwhelming dyspnea despite optimal palliative care, and perceptions about a good death. Results: Among 548 participants (response rate = 52%), we analyzed responses of 477 families whose loved one suffered dyspnea in the last week of life. In total, 167 (45%; 95% confidence interval [CI] = 40%-50%) and 272 (80%; 95% CI = 75%-84%) participants would prioritize dyspnea relief over communication capacity, should they continuously suffer moderate or severe/overwhelming dyspnea, respectively. In multivariate analyses, the determinants of the prioritization of dyspnea relief were perceiving physical comfort as important for a good death (odds ratio [OR] = 1.389; 95% CI = 1.062-1.818; p = 0.017) in moderate dyspnea, and perceiving physical comfort (OR = 2.505; 95% CI = 1.718-3.651; p < 0.001) and not perceiving mental awareness (OR = 0.695; 95% CI = 0.529-0.913; p = 0.009) as important in severe/overwhelming dyspnea. Conclusions: Preferences for individualized GOC for terminal dyspnea can vary among individuals and with different symptom intensity, and may be influenced by perceptions about a good death. Outcome measurements incorporating an acceptable balance between dyspnea intensity and communication capacity should be developed.