ObjectiveThis study aimed to identify who initiated end-of-life discussions (EOLD) and to examine how the timing and initiator of these discussions are associated with bereaved family members' understanding and fulfilling of patients' medical and care-related hopes and wishes.MethodThis retrospective cross-sectional study analyzed anonymous self-administered questionnaires completed by bereaved family members of patients with cancer in Japanese palliative care units. The survey included items on the occurrence, depth, timing, and initiator of EOLDs, as well as family-reported understanding and fulfilling of the patient's medical and care-related hopes and wishes. Two-way analysis of variance was conducted to examine the main effects and interaction between timing and initiator.ResultsOf 995 distributed questionnaires, 523 valid responses (52.6%) were obtained. Among 507 respondents included in the primary analysis, 26.6% reported fully understanding the patient's hopes and wishes. EOLDs were most frequently initiated during cancer treatment, with 41.3% initiated by healthcare providers. No significant interaction was observed for family-reported understanding. In contrast, a significant interaction between timing and initiator of EOLD was observed for fulfilling patients' hopes and wishes (partial η2 = 0.03). In particular, healthcare provider-initiated EOLDs were associated with higher fulfilling scores when conducted early.DiscussionThe timing and initiator of EOLDs were associated with bereaved family members' reports of fulfilling of patients' hopes and wishes, although the effect sizes were modest. These findings suggest that earlier EOLDs-particularly when initiated by healthcare providers-may be associated with better outcomes in terms of fulfilling patients' hopes and wishes. Both the timing and initiator of EOLD should be considered to support effective EOLD.

BACKGROUND: Advance care planning (ACP) improves end-of-life care and communication; however, its long-term effects on bereaved family members remain underexplored. OBJECTIVES: This study aimed to (1) examine how bereaved family members' participation in a deceased cancer patient's ACP influenced their own ACP behavior and (2) explore its impact on their interpersonal relationships and values regarding life and death. DESIGN: A nationwide, cross-sectional, anonymous questionnaire survey was conducted as part of the Japan Hospice and Palliative Evaluation Study 4. SETTING/SUBJECTS: Participants were bereaved family members of cancer patients who had received care at designated palliative care units in Japan and had died before January 31, 2018. MEASUREMENTS: The survey assessed bereaved individuals' ACP behavior (thinking about, discussing, or documenting preferences), discussion partners, and psychological outcomes. Logistic regression analyses identified factors associated with ACP engagement. RESULTS: Of the 639 questionnaires returned (response rate: 63.5%), 544 valid responses were analyzed. Among respondents, 75% had thought about their own ACP, 42.1% had discussed it, and 7.9% had documented it. Participation in a loved one's ACP was significantly associated with thinking about (odds ratio [OR] = 5.07) and discussing (OR = 2.46) one's own ACP. Conversations were linked to increased trust, emotional understanding, and reduced anxiety. CONCLUSIONS: Participation in a loved one's ACP was associated with greater engagement in bereaved individuals' own ACP, along with enhanced interpersonal trust and reflection on life and death. These findings support viewing ACP as a relational and life-oriented process.

BackgroundSocial media provides a novel data source for understanding palliative care from the perspectives of patients and their family caregivers. Nonetheless, no study has examined palliative care-related information on Japanese social media. This study aimed to identify the characteristics of palliative care information on Japanese social media.MethodsPosts published on X (formerly Twitter) during the first week of each month from January to June 2024 that included 1 or more of the following terms were manually collected: "palliative care," "end-of-life care," or "palliative medicine." Posts were analyzed inductively. A Japanese sentiment analysis model was applied to assign a sentiment score (0-1) to each post, with higher scores indicating more positive sentiment. The top 50 posts with the highest sentiment scores and the bottom 50 posts were further analyzed using the same qualitative approach.ResultsIn total, 4689 posts were collected; of these, 3806 (81.2%) were related to palliative care. Thirteen categories were identified. The most frequent category was "general explanations about palliative care" (n = 1,280, 27.3%), followed by "sharing information about palliative care services" (n = 757, 16.1%). Posts with the lowest sentiment scores included "opinions or demands toward end-of-life care systems," "opinions or demands towards medical practice and dissemination of palliative care," and "reporting experiences of patients and informal caregivers."ConclusionJapanese social media platforms may provide valuable insights into family caregivers' experiences, potentially representing a resource for assessing the palliative care quality. Future studies should evaluate the validity of palliative care-related information on social media.

BACKGROUND: Sudden unexpected death can occur even among patients with advanced cancer receiving hospice and palliative care. How bereaved families perceive this remains unclear. OBJECTIVES: To investigate the prevalence of sudden unexpected death from bereaved family perspectives, the level of agreement with physician perspectives, and their association with bereaved families' mental health. DESIGN/SETTING/SUBJECTS: We analyzed longitudinally linked data from a prospective cohort of advanced cancer patients in 23 palliative care units in Japan and a nationwide survey of bereaved families. MEASUREMENTS: Sudden unexpected death was assessed using previously reported definitions: (1) "surprise death" and (2) "rapid decline death," evaluated from both physician and bereaved family perspectives, and (3) "performance status-defined sudden death," evaluated only by physicians. Agreement among definitions was analyzed using kappa statistics. Bereaved families' mental health was evaluated using the Patient Health Questionnaire-9. RESULTS: Among 611 cases, "surprise death" and "rapid decline death" were more frequent from bereaved family (46.5% and 51.2%, respectively) than physician (8.2% and 16.5%, respectively) perspectives. Agreement between family and physician perspectives was low (κ = 0.04-0.14). The bereaved family-perceived "rapid decline death" was significantly correlated with depression (adjusted odds ratio = 1.75, p = 0.028), whereas physician-perceived sudden unexpected death showed no significant correlation. CONCLUSIONS: Compared with physicians' perspectives, bereaved family members perceive death to be sudden or unexpected more frequently and differently, and their perceptions are associated with postbereavement mental health. Further research is needed to explore strategies to improve communication and support families' psychological preparedness when a patient's death may be sudden and unexpected.

BackgroundBereavement care in hospice and palliative care settings commonly includes sending letters or cards to bereaved family members and holding memorial services; however, this practice varies widely across facilities and has not been explored in past research in the Japanese context.ObjectiveThis study examines the current practices and bereaved family members' evaluations of letters, cards, and memorial services in hospice and palliative care units in Japan.MethodsA nationwide retrospective survey was conducted as part of the J-HOPE4 study using self-administered questionnaires mailed to the bereaved family members of patients who died in participating palliative care units.ResultsAmong the 563 respondents, 59.9% had received letters and cards. The most positively evaluated content included expressions of appreciation for care during hospitalization, concern for the family's life after discharge, and messages reflecting the patient's personality. The actual and preferred sending times were largely aligned. Only 9% attended memorial services; the key reasons included the desire to meet or talk with clinicians and expectations of emotional comfort. Respondents preferred services that involved opportunities to interact with staff and events that offered emotional support.ConclusionBereaved family members value individualized letters and cards that acknowledge the patient and family context. Although participation in memorial services was low, attendees sought emotional processing and reconnection from clinicians. These findings highlight the importance of individualized relationship-based bereavement support in palliative care.

BACKGROUND: The use of patient-reported outcomes (PROs) can facilitate the reduction of the severity of patient symptoms. Several countries have implemented projects that routinely use PROs in palliative care settings, resulting in increased patient symptom improvement rates. In Japan, a pilot study of hospital-based palliative care teams was conducted in 2021; however, no study has been conducted in palliative care units (PCUs). This study assessed patient symptom improvement rates using PROs and evaluated the feasibility of routine PRO assessment and data collection in PCUs in Japan. METHODS: We conducted a multicenter, prospective, observational study in eight PCUs. Patients newly admitted to PCUs between June and September 2024 were included in this study. Based on the analysis requirement of 369 PRO responders and an assumed 60% response rate, 615 participants were targeted for enrollment (369/0.60). Data on four symptoms (pain, shortness of breath, nausea, and worries or concerns) were collected weekly using the Integrated Palliative Outcome Scale (IPOS) from admission to week 4. RESULTS: A total of 550 patients were admitted to the PCUs; 388 self-reported patients were included in the analysis. The PRO response rate was > 70% at all timepoints. The IPOS score decreased statistically only between admission and week 1 (pain, p < 0.001; shortness of breath, p < 0.001; nausea, p = 0.001; worries or concerns, p < 0.001). A 1-point decrease in IPOS scores was observed for pain (from 2 to 1), shortness of breath (from 2 to 1), worries or concerns (from 2 to 1) from admission to week 1, and shortness of breath from week 3 to week 4 (from 1 to 0). In the “severe/moderate to absent/mild” and “keep absent/mild” categories, benchmark improvement rates were achieved only for nausea (70.7%; 90.0%). CONCLUSIONS: A 1-week regular evaluation using PROs may be feasible in PCUs in Japan. The greatest improvement in symptom scores occurred within the first week following PCU admission, with an observed plateau in subsequent weeks, suggesting that the first week may be important for assessing the quality of care in PCUs. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-026-01990-9.

AIM: This study aimed to examine the impact of grief and depression on reduced productivity in and outside work among bereaved family members of individuals with cancer. METHODS: We used the data from the J-HOPE-4 study, a nationwide cross-sectional survey involving the bereaved families of individuals with cancer in inpatient hospices and palliative care units across Japan. We evaluated the participants' level of grief on the Brief Grief Questionnaire, their level of depression on the Patient Health Questionnaire, and their level of productivity loss on the Work Productivity and Activity Impairment Questionnaire. RESULTS: Of the participating 902 bereaved families, 98 individuals (10.9%) corresponded to probable prolonged grief disorder (PGD) and 367 (40.7%) to possible PGD. Of the 217 individuals (24.1%) corresponded to mild depression, 89 (9.9%) to moderate depression, and 44 (4.9%) to moderate-to-severe depression. The work-related productivity losses in possible and probable PGD samples were 12.6% and 15.7%, respectively. The work-related productivity losses due to mild, moderate, and moderate-to-severe depression were 8.8%, 19.4%, and 32.5%, respectively. The productivity losses outside work in individuals with possible and probable PGD were 21.6% and 30.9%, respectively. The productivity losses in mild, moderate, and moderate-to-severe depression were 22.6%, 32.8%, and 37.0%, respectively. CONCLUSION: The impact of grief on productivity loss was comparable with that of mild to moderate depression. Both the severity of grief and depression were significantly associated with productivity losses outside work, while only depression was significantly associated with work-related productivity loss.

PURPOSE: Family caregivers of patients with terminal cancer need psychospiritual care. The assessment of their psychospiritual distress is challenging. An automated system can be used to detect psychospiritual distress from large medical records in electronic medical records and help health care providers to accurately assess distress. This study aimed to develop an artificial intelligence system that automatically detects the psychological and spiritual distress of the families of patients with terminal cancer from unstructured text data in electronic medical records. METHODS: This retrospective study collected medical records (n = 1,554,736) from 1 month before the participants died. The participants (n = 808) died at Tohoku University Hospital in Japan between January 1, 2018, and December 31, 2019. We randomly selected 10,000 records from physician and nursing records and split the data set into training and testing sets at a ratio of 70:30. We used the area under the receiver operating characteristic curve (AUROC) and precision-recall curve (AUPRC) to evaluate the model performances. We used explain it like I am 5 and identified important expressions for detecting psychospiritual distress. RESULTS: The model with the highest performance for detecting psychological distress had AUROC and AUPRC values of 0.92 and 0.62, respectively. The model with the highest performance for detecting spiritual distress had values of 0.92 and 0.41, respectively. In psychological distress, the expressions with higher values were anxiety, worry, and tears. In spiritual distress, the expressions with higher values were want, me, and how. CONCLUSION: This study showed the application of machine learning models for the detection of psychospiritual distress among family caregivers of patients with terminal cancer from electronic medical records.

BACKGROUND: Family conflict is a common problem in palliative care and has been identified as a potential barrier to providing appropriate care. Several demographic factors associated with family conflict have been reported; however, associated clinical factors, including symptoms, treatments, and communication, remain to be elucidated. AIMS: The aim of this study was to identify symptoms, treatments, and communication factors associated with family conflict in palliative care units (PCUs). METHODS: We used matched data for deceased patients from a prospective cohort study conducted between January 2017 and December 2017 of cancer patients admitted to PCUs and their bereaved families from a nationwide cross-sectional questionnaire survey in Japan. We assessed family conflict using the Outcome-Family Conflict Scale. RESULTS: We sent out 667 questionnaires, of which 443 (66.4%) were returned. We excluded 81 family members who refused to participate; therefore, we analyzed 362 (81.7%) responses. The mean age of the patients who died of cancer was 73.9 ± 11.3 years, and 51.9% were men. Multivariate logistic regression revealed a significant association between rapid deterioration of the patient's condition, resulting in death within 1-2 days, and family conflict about what is meant by "a good death" (p = 0.044, odds ratio: 2.66), and the presence of family members who insulted or yelled at other family members (p = 0.005, OR: 3.22). In addition, a significant association was found between the confirmation of the family's wishes regarding CPR during hospitalization and family conflicts about healthcare decisions for their relative (p = 0.013, OR: 0.46), about the way a member was treating their relative (p = 0.014, OR: 0.43), and about what is meant by "a good death" (p = 0.028, OR: 0.38). CONCLUSIONS: Our findings suggest that abrupt clinical deterioration is associated with family conflict. Confirming patients' and families' wishes regarding CPR during hospitalization may help reduce family conflict in PCUs.

OBJECTIVES: Communicating prognosis and changes in a patient's condition is essential in patient-centred care. However, little is known about how families experience medical communication during the dying phase. This study aimed to evaluate family members' satisfaction with such communication, identify factors associated with dissatisfaction and explore preferred approaches by healthcare professionals. METHODS: A nationwide survey was conducted among bereaved family members of cancer patients who had died in inpatient palliative care units in Japan. The survey collected data on family characteristics, prebereavement conditions and satisfaction with medical communication during the dying phase, rated on a 3-point scale. Preferences regarding healthcare professionals' communication styles and the timing of postdeath discussions were also assessed. RESULTS: Of 527 respondents (response rate: 53%), only 8% reported dissatisfaction with medical communication. Factors associated with dissatisfaction included older age, female sex, poor mental health and higher household income. Families favoured clear and direct communication over indirect approaches and valued receiving information from both physicians and nurses. CONCLUSIONS: While most bereaved families were satisfied with medical communication, certain factors contributed to dissatisfaction. Enhancing end-of-life care requires collaboration between physicians and nurses to provide clear information, emotional support and tailored, patient-centred communication.

BACKGROUND: We previously developed a 24-item Terminal Delirium-Related Distress Scale (TDDS) to evaluate patient and family distress due to terminal delirium. However, a scale with fewer evaluation items was needed to reduce the burden on terminally ill patients and their families. Thus, the TDDS Shortform (TDDS-SF) was developed, and the validity and reliability of the scale were evaluated. OBJECTIVES: The aim of this study is to evaluate the validity and reliability of TDDS-SF. METHODS: Items with insufficient loading (<0.6) based on factor analysis were removed from the TDDS. Palliative care experts reviewed each item and checked the structure of the scale. Based on their feedback, we developed the TDDS-SF, a 15-item questionnaire consisting of 4 subscales, including "Care for the family," "Ability to communicate," "Psychiatric symptoms," and "Adequate information and discussion about treatment for delirium." A cross-sectional, self-completed questionnaire survey of bereaved families of cancer patients who were admitted to a hospice/palliative care unit was conducted in August 2018. The survey included the TDDS-SF, Good Death Inventory (GDI), Care Evaluation Scale (CES), and distress score in the Delirium Experience Questionnaire. The validity, including construct validity, convergent validity, discriminant validity, and internal consistency, and reliability, including the Cronbach's alpha coefficient for internal consistency, of the TDDS-SF were evaluated. RESULTS: The study included 366 bereaved family members. Factor analysis revealed good construct validity. Convergent validity was demonstrated based on good correlations with the CES (r = - 0.54, P < 0.001) and the GDI (r = - 0.54, P < 0.001). Discriminant validity was demonstrated by a low correlation (r = 0.23, P < 0.001) with the distress scores of bereaved families. The internal consistency was also good (Cronbach's alpha = 0.70-0.94). SIGNIFICANCE OF RESULTS: The TDDS-SF is a valid and feasible tool for assessing irreversible terminal delirium-related distress. A study targeting patients and their families with end-of-life delirium is planned for the near future.

Objectives: Anticipatory grief is associated with post-bereavement grief; however, reports on the influence of pre-loss depression are limited. Therefore, we investigated the association between the anticipatory grief of family members and post-loss and post-depression grief adjusted for pre-loss depression. Methods: This cohort study included the family members of dying patients with cancer. Questionnaires were distributed to them during hospitalization in four inpatient palliative care units from 2016 to 2017. We also administered follow-up questionnaires after their bereavement in 2018. The pre-bereavement questionnaire consisted of three items from the Anticipatory Grief Scale for Families Caring for a Terminally Ill Person for assessing anticipated grief and the Patient Health Questionnaire 9 for assessing depression. The Brief Grief Questionnaire was used to assess post-loss grief. Results: We distributed 181 pre-bereavement questionnaires to the family members; 112 (62%) responded to the pre-bereavement survey, out of which 71 (63%) responded to the post-bereavement survey. Anticipatory grief was significantly associated with pre-loss (ρ = 0.37, ρ < 0.001) and post-loss (ρ = 0.24, P = 0.009) depression and marginally associated with post-loss grief (ρ = 0.15, P = 0.10). Pre-loss depression was also significantly associated with post-loss depression (ρ = 0.50, P < 0.001) and post-loss grief (ρ = 0.41, P < 0.001). However, anticipatory grief was not significantly associated with post-loss depression (P = 0.35) and post-loss grief (P = 0.65) after adjusting for pre-loss depression. Significance of Results: Bereaved families who experienced anticipatory grief had worse post-bereavement depression. However, this association was not statistically significant after adjusting for pre-bereavement depression. Post-bereavement depression may be in a continuum with pre-loss depression, and anticipatory grief does not independently affect post-loss reactions.

OBJECTIVES: Although unfinished business is associated with psychological states in bereaved families of patients with cancer, no evaluation tools have been developed for such families in Japan. This study aimed to develop and examine the validity and reliability of an evaluation tool for unfinished business among families of terminally ill patients with cancer in Japan. METHODS: In August 2020, a cross-sectional online survey consisting of the Unfinished Business Scale for Families, Unfinished Business in Bereavement Scale (UBBS), Brief Grief Questionnaire (BGQ), and Patient Health Questionnaire-9 (PHQ-9) was conducted on bereaved families of patients with cancer, followed by a retest two weeks later. RESULTS: Responses from 206 bereaved families were analyzed using factor analysis. Three subscales (10 items) were identified: Talk, Action, and Message. The Unfinished Business Scale for Families had an overall Cronbach's α coefficient of 0.96, and the intraclass correlation coefficient in the test-retest examination was 0.74. The Unfinished Business Scale for Families was significantly moderately correlated with the UBBS (r = 0.46) and moderately correlated with the BGQ (r = 0.40) and PHQ-9 (r = 0.33). All p-values were <0.001. CONCLUSIONS: Our findings suggest that the Unfinished Business Scale for Families is effective for evaluating unfinished business among families of terminally ill patients with cancer. In the future, it will be necessary to conduct bereaved family surveys using this scale to identify unfinished business among family members. This could lead to health care providers providing more appropriate and adequate care to families with unfinished business.

AIM: Patient-reported outcome measures (PROMs) are increasingly used in palliative care to evaluate patients' symptoms and conditions. Healthcare providers often collect PROMs through conversations. However, the manual entry of these data into electronic medical records can be burdensome for healthcare providers. Voice recognition technology has been explored as a potential solution for alleviating this burden. However, research on voice recognition technology for palliative care is lacking. This study aimed to verify the use of voice recognition and machine learning to automatically evaluate PROMs using clinical conversation voice data. METHODS: We recruited 100 home-based palliative care patients from February to May 2023, conducted interviews using the Integrated Palliative Care Outcome Scale (IPOS), and transcribed their voice data using an existing voice recognition tool. We calculated the recognition rate and developed a machine learning model for symptom detection. Model performance was primarily evaluated using the F1 score, harmonic mean of the model's positive predictive value, and recall. RESULTS: The mean age of the patients was 80.6 years (SD, 10.8 years), and 34.0% were men. Thirteen patients had cancer, and 87 did not. The patient voice recognition rate of 55.6% (SD, 12.1%) was significantly lower than the overall recognition rate of 76.1% (SD, 6.4%). The F1 scores for the five total symptoms ranged from 0.31 to 0.46. CONCLUSION: Although further improvements are necessary to enhance our model's performance, this study provides valuable insights into voice recognition and machine learning in clinical settings. We expect our findings will reduce the burden of recording PROMs on healthcare providers, increasing the wider use of PROMs.

OBJECTIVE: This study aimed to explore the social factors of patients and caregivers, including those related to their wishes for home-based end-of-life care that influence its fulfillment. METHODS: A secondary analysis was conducted using the dataset (home-based end-of-life care N = 625, hospital end-of-life care N = 7603) Comprehensive patient-based survey conducted by The Study on Quality Evaluation of Hospice and Palliative Care by Bereaved Caregivers (J-HOPE 4) and multivariate analysis (multiple logistic regression) to explore the impact of social factors of patients and caregivers on the fulfillment of home-based end-of-life care. The explanatory variables included 11 social factors of patients, such as age and sex, and 18 social factors of primary caregivers. RESULTS: For patients with medical expenses less than 900 USD (OR, 2.05), annual income of fewer than 36,000 USD (OR 0.669), preferences for home care (OR 1.49), preferences to die at home (OR 1.58), wish to die at home (OR 1.52), and lack of patient's financial well-being (OR 0.72) were significant factors associated with home-based end-of-life care. Significant factors relating to caregivers included male caregivers (OR 0.66), poor mental state (OR 0.79), ability to provide daily care (OR 3.02), experience of caring for a deceased family member (OR 0.66), presence of alternative caregivers (OR 0.78), and cohabitation with caregivers (OR 1.47). CONCLUSION: Patient preferences, social situations, primary caregivers' social situations, and mental states influenced home-based end-of-life care.

PURPOSE: To clarify the current use of unapproved and unproven cancer treatment (UUCT) among the bereaved families of patients with cancer who died in palliative care units, the financial burden and psychological experiences of the families, and the relationship between patients in palliative care who used UUCT and communication with their physicians'. METHODS: This study was conducted as part of a cross-sectional, anonymous nationwide survey of the bereaved family members of cancer patients who died in palliative care unit in Japan. RESULTS: Questionnaires were sent to 1,039 bereaved family members, and responses were received from 661 (64%). Of these, 558 were included in the study after excluding the 103 who did not complete the questionnaire. A total of 7.3% (41 of 558) of patients received UUCT. Of these, 34% (14 of 41) of patients were informed that the treatment was in the research phase, and 49% (20 of 41) were informed that the efficacy of the treatment was unknown. Regarding expectations for UUCT, 61% (25/41) expected to be cured, and 80% (33/41) expected it to slow disease progression. In multivariate logistic regression analysis, use of complementary and alternative medicine (CAM) was associated with receiving UUCT (p = 0.024), and patients who could discuss CAM with their doctors tended to receive UUCT (p = 0.054). CONCLUSION: Patients in palliative care unit who expect to cure tended to receive UUCT. These results highlight the challenge of telling patients that UUCT is ineffective and informing them of their prognosis and severe medical conditions.

CONTEXT: The Bereaved Family Survey is an important method for evaluating the quality of palliative care. OBJECTIVES: To examine the distress and benefits of bereaved families of patients with or without cancer, who participated in a Bereaved Family Survey, and identify factors associated with distress and benefits. METHODS: We conducted a nationwide cross-sectional, self-reported questionnaire mail survey among the bereaved families of patients who died of cancer, heart disease, cerebrovascular disease, pneumonia, or kidney failure. Participants answered questions on a four-point Likert scale measuring the distress and benefit associated with participating in the Bereaved Family Survey. We conducted a qualitative analysis of responses to open-ended questions about the distress and benefits of participating in the survey to comprehensively examine the distress and benefits of participating in the survey. RESULTS: Questionnaires were distributed to 115,816 eligible bereaved family members between February 2019 and February 2020; 62,576 (54.0%) family members returned valid responses. Distress and benefits accounted for 51.4% and 49.3%, respectively. The results of the binomial logistic analysis for distress were significantly higher among cancer patients (P < 0.001-0.003), 20-39-year-old patients (P < 0.001), female bereaved family members (P < 0.001), and bereaved family members with poor mental health statuses (P < 0.001). Factors related to "benefit" were significantly higher among over-80-year-old bereaved family members (P < 0.001), higher care evaluation scale (CES) scores (P < 0.001), and higher good death inventory (GDI) scores (P < 0.001). CONCLUSION: Bereaved family members experience both distress and benefits. There is need to devise ways to reduce distress and increase its benefits to continue assessing the quality of palliative care.

OBJECTIVES: Coping styles can be improved by dyadic palliative care interventions and may alleviate patients' and family caregivers' distress. Moreover, family caregivers' preloss resilience protects against depression after bereavement. This study aimed to determine the types of coping styles can be encouraged to increase resilience. METHODS: A self-reported questionnaire survey was administered to family caregivers at the 4 palliative care units, and their resilience was assessed using the Connor-Davidson Resilience Scale (CD-RISC) and their coping styles were assessed using the Brief Coping Orientation to Problem Experienced, as well as their background characteristics. RESULTS: Among 291 caregivers with a mean CD-RISC score of 56.2 (standard deviation: 16.13), internal locus of control, educational level, and history of psychotropic drug use were associated with resilience. After adjusting for the aforementioned factors, more frequent use of positive coping styles such as active coping (Spearman's ρ = 0.29), acceptance (ρ = 0.29), positive reframing (ρ = 0.29), planning (ρ = 0.24), and humor (ρ = 0.18), was found to be associated with higher resilience. On the contrary, more frequent use of negative coping styles such as behavioral disengagement (ρ = -0.38), self-blame (ρ = -0.27), and denial (ρ = -0.14) was found to be associated with less resilience. SIGNIFICANCE OF RESULTS: By assessing internal locus of control, educational level, and history of psychotropic medication use of family caregivers, as factors associated with their respective resilience, may help identify less resilient family caregivers who are at risk for developing major depression after bereavement. In addition, coping skill-based educational interventions targeting patients and their family caregivers that focus on specific coping styles associated with resilience may increase family caregivers' resilience, resulting in less emotional distress and a lower risk of major depression after bereavement.

Abstract Background This study aimed to clarify the situation and evaluate the communication on anticancer treatment discontinuation from the viewpoint of a bereaved family, in reference to the concept of nudges. Methods A multi-center questionnaire survey was conducted involving 350 bereaved families of patients with cancer admitted to palliative care units in Japan. Results The following explanations were rated as essential or very useful: (i) treatment would be a physical burden to the patient (42.9%), (ii) providing anticancer treatment was impossible (40.5%), (iii) specific disadvantages of receiving treatment (40.5%), (iv) not receiving treatment would be better for the patient (39.9%) and (v) specific advantages of not receiving treatment (39.6%). The factors associated with a high need for improvement of the physician’s explanation included lack of explanation on specific advantages of not receiving treatment (β = 0.228, P = 0.001), and lack of explanation of ‘If the patient’s condition improves, you may consider receiving the treatment again at that time.’ (β = 0.189, P = 0.008). Conclusions Explaining the disadvantages of receiving treatment and the advantages of not receiving treatment, and presenting treatment discontinuation as the default option were effective in helping patients’ families in making the decision to discontinue treatment. In particular, explanation regarding specific advantages of not receiving treatment was considered useful, as they caused a lower need for improvement of the physicians’ explanation.

BACKGROUND: Patients in intensive care units (ICUs) often require quality palliative care for relief from various types of suffering. To achieve quality palliative care, specific goals need to be identified, measured, and reported. The present study aimed to develop quality indicators (QIs) for palliative care in ICUs, based on a systematic review and modified Delphi method, and test their feasibility by reviewing electronic medical record (EMR) data. METHODS: The current study was performed in two phases: the development of QIs using the modified Delphi method, and pilot-testing the quality of palliative care in ICUs based on EMR review. The pilot test included 262 patients admitted to the general or emergency ICU at a university hospital from January 1, 2019, to June 30, 2019. RESULTS: A 28-item QI set for palliative care in ICUs was developed based on the consensus of 16 experts. The Delphi process resulted in low measurability ratings for two items: "Assessment of the patient's psychological distress" and "Assessment of the patient's spiritual and cultural practices." However, these items were determined to be important for quality care from the perspective of holistic assessment of distress and were adopted in the final version of the QI set. While the pilot test results indicated the feasibility of the developed QIs, they suggested that the frequency of care performance varied, and certain aspects of palliative care in ICUs needed to be improved, namely (1) regular pain assessment, (2) identification of the patient's advance directive and advance care planning for treatment, (3) conducting an interdisciplinary family conference on palliative care, and (4) assessment of psychological distress of family members. CONCLUSIONS: The QI set, developed using the modified Delphi method and tested using EMR data, provided a tool for assessing the quality of palliative care in ICUs. In the two ICUs considered in this study, aspects of the palliative care process with a low performance frequency were identified, and further national surveys were recommended. It is necessary to conduct ongoing surveys at more facilities to improve the quality of palliative care in ICUs.

BACKGROUND: Patients with coexisting cancer and dementia often have complex health care needs and face challenges in achieving a good death. OBJECTIVES: To evaluate good death achievement and end-of-life (EOL) care in patients with coexisting cancer and dementia from the perspective of bereaved families. DESIGN: Cross-sectional nationwide postal survey. SETTING/SUBJECTS: Bereaved families of patients with cancer who died in hospice and palliative care units across Japan. MEASUREMENTS: Bereaved families completed an anonymous, self-reported questionnaire. Their perspective on achieving a good death was assessed using the Good Death Inventory (GDI) (total score: 18-126). The Revised Care Evaluation Scale-short version (CES2) was used to assess EOL care (total score: 10-60). We examined the Brief Grief Questionnaire (BGQ) (total score: 0-10) and Patient Health Questionnaire 9 (PHQ9) (total score: 0-27). RESULTS: Data from 670 participants were analyzed, including 83 (12.4%) bereaved families of patients with coexisting cancer and dementia. No statistical differences were observed in the total GDI score for 18 items (dementia comorbidity vs. nondementia comorbidity groups, mean ± standard deviation, respectively, 78.4 ± 17.7 vs. 80.0 ± 15.5, adjusted [adj] P = 0.186), CES2 score (49.70 ± 9.22 vs. 48.82 ± 8.40, adj P = 0.316), BGQ score (3.40 ± 2.41 vs. 4.36 ± 2.28, adj P = 0.060), and PHQ9 score (4.67 ± 4.71 vs. 5.50 ± 5.37, adj P = 0.788). CONCLUSIONS: GDI, CES2, BGQ, and PHQ9 scores did not differ significantly between groups, regardless of the presence of dementia in hospice and palliative care units. Patients with coexisting cancer and dementia can achieve a good death by high-quality EOL care.

OBJECTIVES: Insufficient preparedness for bereavement can affect a family's psychological health status after bereavement. However, factors associated with preparedness remain unclear. This study aimed to identify factors associated with preparedness for bereavement in families of patients with cancer. METHODS: We conducted a secondary analysis of a nationwide bereaved family survey in Japan, analyzing data from 9123 family members of patients with cancer. Logistic regression analysis was conducted to explore how sociodemographic factors, health status, and perceived care for patients and families were associated with preparedness for bereavement. RESULTS: Of the 9123 families, 1338 (15.1%) were not prepared for bereavement. Factors associated with insufficient preparedness for bereavement (all p < 0.001) were found as follows: patients' spouses (OR = 2.54), receiving care in acute hospitals (OR = 1.83), worse psychological health status during caregiving (OR = 2.13), lower social support for family members (OR = 1.90), wrong patients' awareness of medical condition from family's perspective (OR = 1.75-2.12), family preference of more aggressive treatment rather than palliative care (OR = 1.71) or not sure (OR = 2.31), not wanting to know information about the patient's prognosis (OR = 1.64-1.77), end-of-life discussion with physician 1 month before patient's death (OR = 1.45), and late or early end-of-life discussions with physician and family (OR = 1.78-1.95). CONCLUSIONS: This study's results might assist clinicians in assessing and identifying families who are not prepared for bereavement; however, preparedness for bereavement may have been associated with other factors.

BACKGROUND: Purposeless physiological monitoring at the end-of-life is not recommended. However, studies on how families feel regarding the death of patients with terminal cancer without continuous electrocardiographic monitoring (CEM) are lacking. OBJECTIVES: To explore the impact on the quality of care and the feelings and psychological distress experienced by families when CEM is not used during the 24 hours preceding a patient's death. METHODS: In this multicenter cross-sectional, self-report questionnaires were distributed to 1087 bereaved families at Japanese specialized palliative care units in 2018. RESULTS: Out of 671 responses, 394 valid responses were analyzed. Families of nonmonitored patients (NM-group) accounted for 79.2%, while those with bedside electrocardiogram monitoring (MB-group) and remote nurse station monitoring (MC-group) comprised 11.9% and 8.9%, respectively. In the NM-group, 85.5% expressed satisfaction without CEM, which was more than 10% lower than other groups. While 14% in the NM-group desired patient monitoring, families who received adequate explanations about CEM had lower proportions compared to the MB-group (P = .021). Univariate analyses showed no significant differences in evaluations of the quality of care and families' psychological distress (mean scores of Overall Care Satisfaction, Care Evaluation Scale, Good Death Inventory, Brief Grief Questionnaires) across all groups. CONCLUSION: While the majority of NM-group were satisfied with their patient's care without CEM, the proportion of dissatisfied families was higher than in other groups. Although not using CEM is not a major hindrance to end-of-life care for patients with terminal cancer, providing sufficient explanations may be important for satisfactory care.

To describe aggressive treatments at end-of-life among inpatients with cancer and non-cancer diseases and to evaluate factors associated with these treatments using the Japanese national database (NDB). We conducted a retrospective cohort study among inpatients aged ≥ 20 years who died between 2012 and 2015 using a sampling dataset of NDB. The outcome was the proportion of aggressive treatments in the last 14 days of life. We considered the underlying causes of death as cancer, dementia/senility, and heart, cerebrovascular, renal, liver, respiratory, and neurodegenerative diseases. We analyzed 54,105 inpatients, with underlying cause of death distributed as follows: cancer, 24.9%; heart disease, 16.5%; respiratory disease, 12.3%; and cerebrovascular disease, 9.7%. The proportion of intensive care unit (ICU) admission was 9.7%, being the highest in heart disease (20.5%), followed by cerebrovascular diseases (12.6%), and least in dementia/senility (.6%). The proportion of cardiopulmonary resuscitation was 19.6%, being the highest in heart disease (38.1%), followed by renal diseases (19.5%), and least in cancer (6.2%). Multivariate logistic regression analysis revealed that having heart diseases, cerebrovascular diseases, younger age, less comorbidities, and shorter length of stay were associated with an increasing risk of aggressive treatments in the last 14 days of life. The proportion of aggressive treatments at the end-of-life varies depending on the disease; additionally, these treatments were associated with having heart diseases, younger age, less comorbidity, and shorter length of stay. Our findings may help develop and set benchmarks for quality indicators at the end-of-life for patients with non-cancer diseases.

The prevalence of dementia and cancer has increased in recent years. The presence of dementia complicates the care of terminal cancer patients and affects their family caregivers. However, palliative care research seldom focuses on the family caregivers of patients with terminal cancer and dementia. This study aimed to evaluate the degree and factors of caregiver burden in cancer patients with dementia who died in hospice palliative care units. Methods: A nationwide cross-sectional survey was conducted among bereaved family members of patients with cancer who died in palliative care units. An anonymous self-report questionnaire was sent to bereaved family members, and they were asked if they were aware of the diagnosis of dementia. The short version of the Caregiver Consequence Inventory was used to measure caregiver burden. Results: The analysis included 670 bereaved family members. Of these, 83 (12.4%) were bereaved family members of terminal cancer patients with dementia. The caregiver burden was statistically significantly higher (3.61 ± 1.58 vs 3.22 ± 1.47; p < 0.036) among family caregivers of terminal cancer patients with dementia. Longer anti-cancer treatment duration (odd ratio, 4.63), poor mental and physical health of family caregivers (odds ratio, 2.05 and 2.20, respectively), pain (odd ratio, 1.72), and dyspnea (odds ratio, 1.67) were contributing factors for caregiver burden. Conclusions: Family caregivers of terminal cancer patients with dementia require care that considers the characteristics of the two serious diseases. Considering the goal of anti-cancer treatment and symptom relief may be a useful strategy for reducing caregiver burden.

BACKGROUND: Establishing appropriate quality assessment indicators for palliative care in intensive care units (ICUs) is vital. This systematic review summarizes the existing quality indicators (QIs) for palliative care in ICUs. It assesses the methodological quality of QI development to pave the way for more valid QIs. METHODS: A literature search was conducted using MEDLINE, PsycINFO, CINAHL, Cochrane databases, and the Ichushi-web database for Japanese literature for all studies published until November 2021. The included QIs were drawn from the National Consensus Project for Quality Palliative Care (NCP) and the Donabedian model of quality. Methodological quality was assessed based on the appraisal of indicators through the research and evaluation tool. RESULTS: Five studies were included, from which 109 indicators were extracted: 78% were process indicators, 5% were outcome indicators, and 17% were structure indicators. The most common indicators addressed the palliative care domain of "ethical and legal aspects of care" (n=38, 30%). Another distinctive feature of some indicators was a focus on supporting ICU staff. Regarding methodological quality, the "scientific evidence" varied (11-89%). Most of the data on QI measures and data sources were obtained from a review of electronic medical records (EMRs). Administrative data also provided a few measurable indicators. CONCLUSIONS: Out of all the QIs covered in this review, most were process indicators, and only a few were outcome indicators. Ethical and legal aspects of care and support for the ICU staff emerged as unique to palliative care. Although the existing QIs can be used for palliative care in ICUs, more specific indicators are urgently needed. Continuous quality assessment and improvement, as well as the addition of more palliative care practices in ICUs, would provide further evidence and help develop valid QIs.

BACKGROUND: Death pronouncement is an important moment that can impact a family's bereavement process; however, necessary improvements in physicians' behavior during death pronouncement remain unclear. OBJECTIVES: To explore whether the lack of certain behaviors by the physician was associated with a perceived need for improving death pronouncement for advanced cancer patients in palliative care units (PCUs). METHODS: This study was a secondary analysis of a nationwide multicenter questionnaire survey conducted in 2018 that targeted bereaved family members of cancer patients who died in PCUs. We performed univariate analysis to investigate the need to improve behavior toward death pronouncement. We performed bivariate analysis to investigate the relationship among the need for improvement in behavior toward death pronouncement, physician attribution (primary responsible physician, a member of the same team, and another physician), and nine specific behaviors. RESULTS: Four hundred twenty-two questionnaires (64.2%) were returned. We analyzed 356 responses and found that 32.5% perceived the need to improve death pronouncement. Lack of certain behaviors at death pronouncement, especially not explicitly explaining the cause of death to family members (odds ratio: 11.89, p < 0.001), were positively associated with the need for improvement. There were significant differences among the types of physician attribution regarding the need for improvement (primary responsible physician vs. a member of the same team vs. another physician [15.1% vs. 42.6% vs. 45.7%, p < 0.001]). CONCLUSION: There was a significant positive association between the lack of certain behaviors toward death pronouncement and the need for improvement. The major lack of behavior toward death pronouncement was not explicitly explaining the cause of death to family members and not calling out to the patient before beginning the patient's examination.

Identifying the cause of death is important for the study of end-of-life patients using claims data in Japan. However, the validity of how cause of death is identified using claims data remains unknown. Therefore, this study aimed to verify the validity of the method used to identify the cause of death based on Japanese claims data. Our study population included patients who died at two institutions between January 1, 2018 and December 31, 2019. Claims data consisted of medical data and Diagnosis Procedure Combination (DPC) data, and five definitions developed from disease classification in each dataset were compared with death certificates. Nine causes of death, including cancer, were included in the study. The definition with the highest positive predictive values (PPVs) and sensitivities in this study was the combination of "main disease" in both medical and DPC data. For cancer, these definitions had PPVs and sensitivities of > 90%. For heart disease, these definitions had PPVs of > 50% and sensitivities of > 70%. For cerebrovascular disease, these definitions had PPVs of > 80% and sensitivities of> 70%. For other causes of death, PPVs and sensitivities were < 50% for most definitions. Based on these results, we recommend definitions with a combination of "main disease" in both medical and DPC data for cancer and cerebrovascular disease. However, a clear argument cannot be made for other causes of death because of the small sample size. Therefore, the results of this study can be used with confidence for cancer and cerebrovascular disease but should be used with caution for other causes of death.

CONTEXT: Bereaved family members sometimes experience distress due to stressful life events. However, the effects of this distress on depression and grief remain unclear. OBJECTIVES: To clarify the degree of distress due to post-bereavement stressful life events, its associated factors, especially social isolation, and its effects on major depressive disorder (MDD) and complicated grief (CG) risks among bereaved family members of patients with cancer. METHODS: This cross-sectional questionnaire survey was conducted in 2018 as part of the J-HOPE4 study. We recruited 1740 bereaved family members of patients with cancer who died from July to August of 2018. We assessed distress due to post-bereavement stressful life events with the Bereavement Secondary Stressor Scale, social isolation with the Lubben Social Network Scale Short-Form, and the MDD and CG risk with the Patient Health Questionnaire-9 and Brief Grief Questionnaire, respectively. RESULTS: Among the 913 (52.5%) respondents, 88%, 57%, 46%, 28%, and 19% experienced distress due to incidental tasks, daily life difficulties, financial problems, problems with other people, and deterioration of family relationships, respectively. More distress was associated with higher risks of MDD (odds ratio [OR] = 2.5, p < 0.01) and CG (OR = 2.5, p < 0.01). Social isolation and specific backgrounds were associated with more distress in response to stressful life events. CONCLUSION: Most family members experienced distress due to stressful life events, which were risk factors for MDD and CG. Assessing risk factors for maladaptation to post-bereavement life changes and enhancing readiness to adapt to them is important.

BACKGROUND: Bereaved family members are known to have a higher risk of suicide, although relevant research is lacking. We aimed to clarify the percentage of bereaved family members of patients with cancer who experience suicidal ideation and the associated factors. METHODS: We conducted a secondary analysis of two cross-sectional nationwide bereavement surveys in Japan, analyzing data from a total of 17,237 bereaved family members of patients with cancer. The Patient Health Questionnaire 8 (PHQ-8) and Item 9 of the PHQ-9 were used to assess depression (PHQ-8 score ≥10) and suicidal ideation, respectively. We assessed items such as socio-demographic data, complicated grief (CG), preparedness for bereavement, and perceived social support. Logistic regression analysis was used to reveal factors related to suicidal ideation. RESULTS: Overall, 11 % of subjects reported some amount of suicidal ideation in the previous two weeks, with a suicidal ideation rate as high as 42 % among those with a higher risk of depression. Significant associations (all p < 0.0001) were found between suicidal ideation and the family member's depressive state (OR: 10.01), poor physical health status during caregiving (OR: 1.24), poor psychological health status during caregiving (OR: 1.38) pre-existing mental illness (OR: 1.38), insufficient preparedness for bereavement (OR: 0.59), and poor perceived social support (OR: 1.42). LIMITATIONS: The respondents were limited to family members of patients with cancer in Japan, and the study involved cross-sectional self-reported data. CONCLUSIONS: Clinicians should identify bereaved family members at a high risk of suicide by carefully assessing these risk factors identified in the present study.

OBJECTIVE: End-of-life experiences (ELEs), such as deathbed visions (DBVs), have been reported worldwide. However, ELEs have rarely been discussed in clinical practice, possibly because of the different perceptions of ELEs among clinicians and families. Therefore, this study aimed to investigate the differences in perception regarding ELEs, especially DBVs, between clinicians and families. METHODS: We conducted a multicentre, prospective and observational study with patients with cancer. After the patients' death, clinicians recorded their perceptions of patients' ELEs during the palliative care unit admission, and bereaved families responded to a questionnaire about ELEs. The primary outcome was the frequency and concordance of DBVs from the perspective of bereaved family members and clinicians. The second outcome was each group's frequency of terminal lucidity and terminal coincidence. RESULTS: The study included 443 patients. DBVs were reported more frequently by family members than clinicians (14.0% vs 2.7%, p<0.001). Among family members, terminal lucidity and terminal coincidence were observed at 7% and 7.9%, respectively, while only one case each was reported by clinicians. CONCLUSIONS: Clinicians and family members may perceive ELEs differently. Enabling patients and their families to talk about ELEs would assist in optimising grief care.

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.

PURPOSE: Some patients experience intense symptoms refractory to intensive palliative care, and palliative sedation is sometimes used. Palliative sedation may be classified into proportional and continuous deep sedation (CDS). The primary aim of this study was to compare family experience between families of patients who received proportional or CDS. METHODS: A multicenter questionnaire survey was conducted involving bereaved families of cancer patients who received proportional or CDS based on a sedation protocol. Overall evaluation of sedation (satisfaction, family-perceived distress, appropriateness of timing, and patient distress) and 13-item family concerns, good death, satisfaction with care, depression, quality of care, unfinished business, and balance between symptom relief and maintaining communication were measured. RESULTS: Among the 2120 patients who died, 222 patients received a continuous infusion of midazolam. A sedation protocol was used in 147 patients, and questionnaires were sent to 124 families. A total of 78 responses were finally returned (proportional, 58 vs. CDS, 20). There were no significant differences in the overall evaluation, family concerns, total score of good death, satisfaction, depression, or balance between symptom relief and maintaining communication. On the other hand, some quality of care items, i.e., relationship with medical staff (P < 0.01), physical care by nurses (P = 0.04), and coordination and consistency (P = 0.04), were significantly better in the CDS group than in the proportional sedation group. Family-reported unfinished business was also better in the CDS group, with marginal significance. CONCLUSIONS: Family experience of CDS was not less favorable than proportional sedation, and actually rated more favorably for some elements of quality of care and unfinished business.

PURPOSE: Cancer of unknown primary site (CUP) is an aggressive disease with poor prognosis. As research on the experiences of CUP patients and their families is scarce, this study aimed to compare the family caregiver-perceived burden of CUP with that of common cancers (lung, colon, and stomach cancers). The association between family caregiver-perceived burden and CUP patients' quality of life (QOL) at end-of-life and family depression, respectively, was also explored. METHODS: This was a pre-planned secondary analysis of nationwide cross-sectional survey data from the bereaved family caregivers of patients with cancer who died at 286 institutions. The major measurements were the eight-item family caregiver-perceived Burden scale (comprising specialist access, uncertainty, and prolonged diagnosis), Good Death Inventory, and Patient Health Questionnaire 9. RESULTS: Of 27,591 survey responses, we analyzed 97 and 717 responses from family caregivers of patients with CUP and common cancer, respectively. The families of CUP patients scored significantly higher on all three burden subscales than those of common cancer patients (effect sizes: specialist access subscale, 0.3; uncertainty subscale, 0.66; and prolonged diagnosis subscale, 0.69; adjusted P < 0.01). Greater family burden was significantly associated with lower patient QOL and higher family depression. Burden was significantly associated with being a spouse, second opinion consultation, and diagnosis period of > 1 month. CONCLUSION: The family caregivers of CUP patients experience poor specialist access, greater uncertainty, and a prolonged diagnosis. They should be cared for from the initial stages to establish access to specialists, obtain an early diagnosis, and reduce uncertainty.

BACKGROUND: This study aimed to explore (i) the consistency between physician-rated and bereaved family-perceived intensity of death rattle, (ii) the relationship between intensity of death rattle and the bereaved family's distress and (iii) the bereaved family's experience and feelings related to suctioning for death rattle. METHODS: We used matched data for deceased patients from a prospective cohort study of cancer patients admitted to a palliative care unit, and their bereaved families from a nationwide questionnaire survey in Japan. The intensity of death rattle using Back's score was evaluated prospectively by physicians and retrospectively by bereaved families. RESULTS: In total, 1122 bereaved families answered (response rate: 66.7%). Of these, 297 reported the development of death rattle. The maximum intensity of death rattle evaluated by physicians and perceived by bereaved families was poorly correlated (Spearman correlation coefficient 0.188, P = 0.082). The optimal cut-off point of Back's score for detecting high-level distress was 1/2, with a low accuracy of prediction (area under the curve 0.62). More than 70% of bereaved families indicated suctioning reduced the intensity of death rattle, made patients comfortable and themselves relieved, whereas a similar proportion felt patients were in distress during suctioning. Families who felt suctioning was gently performed and discussed well whether to do suctioning with health care providers felt less needs for improvement. CONCLUSIONS: Bereaved family-perceived intensity of death rattle did not correlate to physician-evaluated intensity, and the intensity of death rattle itself seemed to poorly correlate to family distress. Gently performed suctioning based on sufficient discussion with families can help reduce family-perceived patient discomfort.

PURPOSE: No studies have investigated the association between malignant brain tumor and the quality of dying, which is an important outcome in end-of-life care. This study aimed to clarify whether the quality of dying and related factors in patients with malignant brain tumor differ from those in patients with other malignant diseases. METHODS: This was a secondary analysis of data collected by two nationwide, multicenter, bereavement surveys of palliative care units in Japan. This analysis included 14,171 bereaved family members (160 patients with malignant brain tumors). The quality of dying was examined using the good death inventory (GDI), a validated tool widely used in palliative care settings. RESULTS: Patients with malignant brain tumors were younger (p < 0.0001) and had a longer palliative care unit stay during their end-of-life (p < 0.0001) than others. The total GDI score was significantly lower in patients with malignant brain tumors than others (p < 0.0001). Five GDI items were significantly lower in the malignant brain tumor group than other cancer group: "Being able to stay in one's favorite place" (p = 0.03); "Trusting the physician" (p = 0.003); "Not being a burden to others" (p = 0.01); "Being independent in daily activities" (p = 0.01); and "Feeling that one's life is worth living" (p = 0.001). CONCLUSION: This study showed that the quality of dying of patients with malignant brain tumors was lower compared to other cancers, suggesting the need to review care for patients with malignant brain tumors based on their characteristics.

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.

OBJECTIVES: Family conflict during end-of-life care is an important issue for advanced cancer patients and their families, although studies are lacking. We investigated the association between family relationships and family conflict in advanced cancer patients. METHODS: This study was a secondary analysis of a nationwide multicenter questionnaire survey targeting the bereaved family members of cancer patients who died in palliative care units, general wards, or at home to evaluate the quality of end-of-life care in Japan. RESULTS: A total of 1084 questionnaires (63.0%) were returned and we analyzed a total of 908 responses. In total, 38.0% of family members reported at least one family conflict during end-of-life care, and the most frequent family conflict was "about certain family members not pulling their weight" (23.5%). Multivariate linear analysis revealed family members who asserted their opinions (p < 0.001), family assessment device score (p < 0.001), worries about family finances during cancer treatment (p < 0.001), family members contacted after illness were helpful (p = 0.003), female patients (p = 0.03), and family with family relationship index ≤7 (p = 0.04) were positively associated with the outcome-family conflict (OFC) score. Proxy decision maker was selected by the patient (p = 0.003), people listened to families' worries or problems (p = 0.003), physician gave sufficient explanation (p = 0.003), living will before their illness (p = 0.038) and female bereaved family members (p = 0.046) were negatively associated with the OFC score. CONCLUSIONS: It may be important for health care providers to actively assess the possibility of family conflicts according to family relationships, such as a proxy decision maker having been selected by the patient.

PURPOSE: Although home care improves patients' quality of life (QOL), several studies have suggested that home care lowers the QOL of family caregivers and decreases their mortality. To alleviate the deleterious impact of home care on caregivers, the major burdens on caregivers and the clinical characteristics of the caregivers vulnerable to the major burden needs to be clarified. METHOD: A survey questionnaire was distributed to 710 family caregivers of patients with cancer in Japan, and 342 valid responses were obtained (valid response rate: 48.2%). The Burden Index of Caregivers was used to identify the major burden on caregivers. To assess the associations of the patients' care needs level and other clinically relevant factors with the major burden, a multivariable-adjusted logistic regression model was used. RESULTS: The time-dependent burden was identified as a major burden. An adjusted model showed a nonlinear association between the care needs level and the time-dependent burden, in which the caregivers of the patients who required moderate care needs level had the highest time-dependent burden [adjusted odds ratio of none, mild, moderate, and severe care needs levels: 0.50 (95% confidence interval 0.07-2.12), 1.08 (0.43-2.57), 1.87 (1.01-3.52), and 1.00 (reference), respectively]. Additionally, older patients and younger caregivers were significantly associated with a time-dependent burden. CONCLUSION: The time-dependent burden was highest in caregivers at the moderate care needs level and younger caregivers. An imbalance between the demand and supply of care services may be improved by considering the clinical characteristics of both patients and caregivers.

Purpose: Our purpose is to report an actual performance of our farewell prayer gathering held by the chaplain in our inpatient hospice at the Japan Baptist Hospital, and to describe what impressions and thoughts the bereaved families had about our farewell prayer gathering. Method: The questionnaires were sent to 84 patients’ families asking about our farewell prayer gathering. We analyzed the content of their comments. Results: Among the 40 families that responded, 15 families experienced our farewell prayer gathering. The words such as “prayer” and “participation of the staff” were mentioned as the favored experiences. The bereaved families felt “an emotional closure”, “peace of mind”, and “healing of mind and body”. They also found the gathering as “an opportunity to look back” and “special memorable moment”. Discussion: Our farewell prayer gathering is likely to be helpful for the bereaved to give peace to their mind and to reduce feelings of loss. By sharing the voices of bereaved families, it will be helpful for the betterment of grief care to future bereaved families in hospice care. We would like to see further research in the future.

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. Pre-loss 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. Even after adjustment of the background variables as covariates, the interaction effect between family caregivers' pre-loss depressive symptoms and resilience on post-loss depressive symptoms was observed (F = 7.29; p < 0.01). Moreover, pre-loss resilience was not associated with other bereavement outcome measures. CONCLUSIONS: Among family caregivers of patients with cancer in PCUs, 47% and 15% had high risk for MDD before and after bereavement, respectively. Moreover, pre-loss resilience mitigated post-loss depressive symptoms among family caregivers who had high risk for MDD before bereavement. However, considering the study's small sample size, further research is needed.

Few studies have investigated appropriate referral timing of specialized palliative care (SPC) from the perspective of cancer patients' and families' experiences. We aimed to clarify appropriate SPC referral timing for patients with advanced cancer and their families. We used data from a nationwide bereaved family survey in Japan. We sent a questionnaire to 999 bereaved families of cancer patients who died in 164 palliative care units (PCUs) and analyzed the first SPC referral timing and how patients evaluated it. We defined SPC as outpatient or inpatient palliative care service comprising certified palliative care physicians, advanced-practice nurses, and multidisciplinary practitioners. Finally, 51.6% (n = 515) of all responses were analyzed. The SPC referral timing was evaluated as appropriate (26.1%), late or too late (20.2%), early or too early (1.2%), or none of these (52.5%). Of these, 32.3% reported that they were referred to an SPC when diagnosed with advanced or incurable cancer or during anti-cancer treatment, and 62.6% reported they were referred after anti-cancer treatment. Patient-perceived appropriateness of SPC referral timing was associated with their good death process. After excluding "none of these" responses, a significantly higher proportion of respondents who reported being referred to SPC at diagnosis and during anti-cancer treatment evaluated the response timing as appropriate, compared to those who reported being referred after anti-cancer treatment. Appropriate timing for SPC referrals relates to quality of death; findings suggest that appropriate timing is at the time of diagnosis or during anti-cancer treatment.

Background: Bathing in a tub is integral to Japanese culture. It improves palliative care patients' symptoms and may improve quality of life. Objectives: This study aimed to determine the prevalence and impressions of bathing for terminally ill cancer patients and its relations to the evaluations of perceived end-of-life care and achievement of a good death. Design: This was a cross-sectional, anonymous, self-report questionnaire survey. Setting/Subjects: The questionnaire for this study was sent to bereaved family members who had lost loved ones in 14 general hospitals and 187 palliative care wards in Japan. Measurements: The bereaved family members of the patients who had actually bathed were asked about their impression of bathing. The short version of the Good Death Inventory (GDI) and the Care Evaluation Scale were used to evaluate "achievement of a good death." In total, 1819 surveys were sent between July and September 2018 to bereaved family members of patients who had died between February 2014 and January 2018 in 14 general hospitals and 187 palliative care wards in Japan. Overall 885 questionnaires (valid response rate 48%) returned by bereaved family members were analyzed. Results: Overall, 85% of bereaved family members of patients who bathed evaluated the experience positively, 86% reported that the patient's face seemed to become calm after the bath, and 28% of bereaved family members whose loved one had not bathed reported regretting it. The total GDI score for the bereaved family's desired death was 82.7 ± 13.0 for the bathing group and 75.4 ± 15.7 for the no bathing group, a significant difference (effect size = 0.52, p < 0.01). Conclusions: Bathing before death was evaluated positively and was associated with the achievement of a good death.

CONTEXT: Family functioning is a modifiable factor associated with major depressive disorder (MDD) and complicated grief (CG) among the bereaved families of patients with advanced cancer; however, the evidence regarding this association is limited. OBJECTIVES: We aimed to explore the association of family functioning with possible MDD and CG among the bereaved families of patients with advanced cancer who died in palliative care units. METHODS: This study is a part of the J-HOPE4 study, a nationwide cross-sectional multi-purpose questionnaire survey conducted in 2018. We recruited potential participants from 164 inpatient palliative care units in Japan and assessed family functioning with the Family Relations Index (FRI). Family functioning was classified into three categories (Well-functioning: FRI ≥ 10, Intermediate: FRI = 8〜9, Dysfunctioning ≤ 7). The Patient Health Questionnaire 9 (PHQ-9) and the Brief Grief Questionnaire (BGQ) were used to assess depression (PHQ-9 score ≥ 10) and complicated grief (BGQ score ≥ 8), respectively. Multinomial logistic regression analysis was performed with possible MDD and CG and factors the family functioning. RESULTS: A total of 615 questionnaires were returned, of which 54.0 % (n = 510) age of questionnaires could be used. Although family functioning was associated with possible MDD (21.1% in Dysfunctional; 9.3% in Well-functional, P = 0.016), it was not associated with possible CG (14.8% in Dysfunctional; 9.9% in Well-functional, P = 0.929). Possible MDD and CG were significantly associated with deteriorated family relationships (OR:8.29; P = 0.004 and OR:34.00; P < 0.001, respectively), and consulting with health care providers about their concerns (OR:0.23; P = 0.003 and OR:0.23; P = 0.003, respectively). CONCLUSIONS: Family function was affected by post-bereavement possible MDD and not by CG. Our findings suggest that health care providers can identify risk factors for MDD among bereaved, dysfunctional family members.

CONTEXT: Terminal dyspnea in dying cancer patients is frequent and distressing, and the impact extends to their families. Families are often involved in providing care for terminal dyspnea. OBJECTIVES: This study aimed to describe various care strategies for terminal dyspnea in cancer patients hospitalized in palliative care units (PCUs), evaluate families' satisfaction with care for terminal dyspnea, and explore determinants contributing to families' satisfaction. METHODS: A nationwide, cross-sectional survey was conducted using a self-reported questionnaire among bereaved families of cancer patients who died in PCUs. The questionnaire consisted of questions on the perceptions of care offered to patients with terminal dyspnea and their families, satisfaction with care for terminal dyspnea, family-perceived intensity of terminal dyspnea, use of oxygen, and background data of patients and families. RESULTS: In total, 533 participants (response rate = 54%) returned the completed questionnaires, and 231 reported that their loved one had experienced terminal dyspnea. Dedicated and compassionate care was perceived by 60%-89% of the participants as the strategy provided for patients. Care for family members was perceived by 58%-69% of the participants. Perception of dedicated and compassionate care for patients and that of care for family members were significantly associated with high satisfaction (odds ratio, 95% confidence interval: 8.64, 3.85-19.36 and 15.37, 5.00-47.25, respectively). CONCLUSION: Dedicated and compassionate care may be the essential part of the care for terminal dyspnea. Dedicated and compassionate care for patients and care for family members have a potential of improving the care satisfaction among family caregivers.

This study examined differences in sociodemographic characteristics and the achievement of a good death between cancer patients who live alone and those who do not live alone prior to death in different settings. Secondary analysis of data collected across two cross-sectional self-reported questionnaire surveys was undertaken. The participants were bereaved family members of cancer patients who had died in palliative care units (PCUs), acute hospitals or homes. We stratified the data by the place of death and examined the differences in sociodemographic characteristics to determine the relationship between cancer patients achieving a "good death" and whether they were living alone. The data were collected through 15,949 surveys. On the Good Death Inventory, significantly higher total scores emerged for cancer patients who were living alone than for those who not living alone in PCUs (effect size [ES] = 0.11, Student's t-test: p < .0001), but not in acute hospitals (ES = -0.03, p = 0.74) or home care services (ES = 0.02, p = 0.86). Cancer patients who were living alone were more likely to have been female, been older and have earned a lower annual income than those who were not living alone. Thus, among those who had received specialized palliative care, there was no difference in the quality of palliative care between cancer patients who were or were not living alone.

In end-of-life care, rehabilitation for terminally ill cancer patients is inconsistently provided and rarely discussed. We sought to clarify the prevalence of unmet rehabilitation need for patients admitted to inpatient hospice/palliative care units as perceived by bereaved family members. We conducted a nationwide questionnaire survey of 1001 family members of cancer patients who died at inpatient hospices/palliative care units. For cancer patients who did not receive rehabilitation, we asked if family members perceived that the patient would have wanted rehabilitation intervention. Data were obtained from 416 respondents. Of these, 281 (67.5%) cases received no rehabilitation. The need for physical modalities was the most frequently reported (27.8%; 95% CI: 22.6-33.4), followed by relief of dyspnea (25.6%; 95% CI: 20.6-31.1) and treatment of edema (23.8%; 95% CI: 19.0-29.3). A non-negligible proportion of bereaved families reported unmet need for rehabilitation related to symptom management in inpatient hospices/palliative care units.

OBJECTIVE: To derive and validate a risk scoring system for predicting major depressive disorder (MDD) and complicated grief (CG) among bereaved family members of patients with cancer that is feasible for clinical use. METHODS: We conducted a secondary analysis of two cross-sectional nationwide bereavement surveys in Japan. From a total of 17,312 bereaved family members of patients with cancer, 8618 and 8619 were randomly assigned to a derivation and a validation group. The Patient Health Questionnaire 9 (PHQ-9) and the Brief Grief Questionnaire (BGQ) were used to assess MDD (PHQ-9 score ≥ 10) and CG (BGQ score ≥ 8), respectively. We compared five models with potential predictive variables that could be easily obtained in daily practice and were included in the bereavement survey (i.e., sociodemographic data). RESULTS: The model which included variables such as the families' physical/mental health status and preparedness toward bereavement, in addition to their sociodemographic data, was considered modest for predicting the risk of both MDD and CG. The areas around the curve for MDD and CG were 0.74 (95% CI: 0.73-0.76) and 0.74 (95% CI: 0.72-0.75) and 0.78 (95% CI: 0.76-0.79) and 0.77 (95% CI: 0.76-0.79) in the derivation and validation groups, respectively. CONCLUSIONS: We developed a clinical risk score for predicting MDD and CG among bereaved family members of patients with cancer. However, further research is needed for external validation and assessment regarding its implementation in actual practice.

OBJECTIVE: To evaluate the quality of the structure and process of cancer care from the perspective of patients with cancer, we developed a Cancer Care Evaluation Scale. METHODS: Two anonymous online surveys of patients with cancer in Japan were conducted using a convenience sample of 400 adult cancer outpatients. RESULTS: In total, 162 patients participated in the online surveys. Factor analysis revealed that the Cancer Care Evaluation Scale had the following 12 domains: (i) relationship with physician, (ii) relationship with nurse, (iii) physical care by physician, (iv) physical care by nurse, (v) psycho-existential care, (vi) help with decision-making for patients, (vii) coordination and consistency, (viii) environment, (ix) cost, (x) availability, (xi) care for the side effects of cancer treatment by a physician, and (xii) care for the side effects of cancer treatment by a nurse. The Cancer Care Evaluation Scale was correlated with overall care satisfaction (r = 0.75), but not with the quality of life (r = 0.40). In regard to rest-retest reliability, most items showed an intraclass correlation coefficient of 0.7 or higher. CONCLUSION: The validity and reliability of the Cancer Care Evaluation Scale were confirmed, suggesting that this tool is useful for evaluating the quality of cancer care from the perspective of patients with cancer.

CONTEXT: In end-of-life care, rehabilitation for patients with cancer is considered to be an important means for improving patients' quality of death and dying. OBJECTIVES: To determine whether the provision of rehabilitation for patients with cancer in palliative care units is associated with the achievement of a good death. METHODS: This study involved a cross-sectional, anonymous, and self-report questionnaire survey of families of patients with cancer who died in palliative care units in Japan. We evaluated the short version of Good Death Inventory (GDI) on a seven-point scale. A logistic regression model was used to calculate the propensity score. Covariates included in this model were survey year, patients' characteristics, and families' characteristics. The associations between rehabilitation and GDI were tested using trend tests after propensity score matching adjustment. RESULTS: Of the 1965 family caregivers who received the questionnaires, available data were obtained from 1008 respondents (51.2%). Among them, 285 (28.2%) cases received rehabilitation in palliative care units. There was no difference in total GDI score between the groups with and without rehabilitation. In exploratory analyses, patients receiving rehabilitation were significantly more likely to feel maintaining hope and pleasure (mean 4.50 [SE 0.10] vs. 4.05 [0.11], respectively; effect size [ES] 0.31; P = 0.003), good relationships with medical staff (mean 5.67 [SE 0.07] vs. 5.43 [0.09], respectively; ES 0.22; P = 0.035), and being respected as an individual (mean 6.08 [SE 0.06] vs. 5.90 [0.07], respectively; ES 0.19; P = 0.049) compared with patients not receiving rehabilitation. CONCLUSION: Rehabilitation in palliative care units may contribute to several domains of quality of death and dying, particularly maintaining hope and pleasure. Further research is needed to investigate whether palliative rehabilitation contributes to the achievement of a good death.

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 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 patients with cancer in Japan. RESULTS: In total, 1001 questionnaires were sent, and 610 questionnaires 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.

Providing spiritual care in light of a patient's religious and/or spiritual background can help improve the quality of end-of-life care. Rinsho-shukyo-shi is a Japanese interfaith chaplain who provides religious and spiritual care to patients. In this study, we qualitatively explore the impressions of patients in a palliative care unit of the activities of an interfaith chaplain in a hospital in Japan. The authors used semi-structured interviews carried out by a male nurse experienced in qualitative and quantitative research in palliative care. The male nurse asked only a few predetermined questions in the interviews, which were conducted from January 19 to December 26, 2018. The interviewees were 15 patients diagnosed with advanced cancer (five men and 10 women; aged 53-81 years), and they were admitted to the palliative care unit of Tohoku University Hospital (the hospital has no religious affiliation). Patients who had spoken to the interfaith chaplain at the hospital at least twice were included in the study. The interviews were digitally audio-recorded, transcribed verbatim, and analyzed. Three main themes were identified through thematic analysis. Resistance varied across patients; no patient felt resistance to the intervention by, or to the presence of, the interfaith chaplain once he/she had spoken with him. Opinions about the interfaith chaplain also varied, with 10 patients claiming that his role was necessary for end-of-life care and beneficial for the chaplain himself. Finally, the patients' religious beliefs varied widely. In conclusion, the interfaith chaplain is deemed helpful by the interviewed patients in relieving their anxieties.

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.

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.