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Bereaved family members sometimes experience distress due to stressful life events. However, the effects of this distress on depression and grief remain unclear.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.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.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, p0.01) and CG (OR = 2.5, p0.01). Social isolation and specific backgrounds were associated with more distress in response to stressful life events.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.

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.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.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).The respondents were limited to family members of patients with cancer in Japan, and the study involved cross-sectional self-reported data.Clinicians should identify bereaved family members at a high risk of suicide by carefully assessing these risk factors identified in the present study.

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.

Research on the association between circumstances of death in advanced cancer patients and depression in their bereaved caregivers is limited.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.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.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.

Background Palliative care is an essential component of comprehensive care for patients with critical illnesses. In Japan, little is known about palliative care in intensive care units (ICUs), and palliative care approaches are not widespread. This study aimed to better understand the attitudes of physicians toward palliative care and the utilization and needs of specialized palliative care consultations in ICUs in Japan. Methods A nationwide, self-administered questionnaire was distributed ICU physician directors in all hospitals with ICUs. Results Questionnaires were distributed to 873 ICU physician directors; valid responses were received from 436 ICU physician director (50% response rate). Among the respondents, 94% (n = 411) felt that primary palliative care should be strengthened in ICUs; 89% (n = 386) wanted ICU physicians to collaborate with specialists, such as palliative care teams (PCTs); and 71% (n = 311) indicated the need for specialized palliative care consultations; however, only 38% (n = 166) actually consulted, and only 6% (n = 28) consulted more than 10 patients in the past year. Physicians most commonly consulted PCT for patients with serious end-of-life illness (24%) (n = 107), intractable pain (21%) (n = 92), and providing psychological support to family members (43%, n = 187). The potential barriers in providing primary and specialized palliative care included being unable to understand the patients' intentions (54%, n = 235), lack of knowledge and skills in palliative care (53%, n = 230), and inability to consult with PCTs in a timely manner (46%, n = 201). Conclusions These data suggest a need for primary palliative care education in ICUs and improved access to specialized palliative care consultations.

Background: Patients with life-limiting illnesses frequently experience urinary difficulties, and urinary catheterization is one of the interventions for managing them. However, evidence supporting the effects of urinary catheters on the quality of death (QoD) is lacking in this population. Objectives: To investigate whether urinary catheterization affects QoD in patients with advanced cancer in palliative care units. Design: A secondary analysis of a multicenter, prospective cohort study. Setting/Subjects: The study enrolled consecutive patients with advanced cancer admitted to palliative care units in Japan between January and December 2017. Those who were not catheterized on admission and who died while in a palliative care unit were analyzed. Measurements: QoD was evaluated at death using the Good Death Scale (GDS). Results: Of 885 patients, 297 (33.6%) were catheterized during their palliative care unit stay. Females and patients with a long palliative care unit stay were more likely to be catheterized. In inverse probability-weighted propensity score analysis, patients with urinary catheterization during their palliative care unit stay had higher total GDS scores than those without catheterization (coefficient 0.410, 95% confidence interval 0.068-0.752). In subgroup analyses stratified by sex, age, and length of palliative care unit stay, urinary catheterization was associated with higher total GDS scores in patients younger than 65 years of age and those who died after a palliative care unit stay of 21 days or fewer. Conclusions: This study suggested that urinary catheterization during a palliative care unit stay may have a positive impact on overall QoD in patients with advanced cancer. This study was registered in the UMIN Clinical Trials Registry (UMIN000025457).

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.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.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.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; P0.001, respectively), and consulting with health care providers about their concerns (OR:0.23; P = 0.003 and OR:0.23; P = 0.003, respectively).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.

Summary: Background & Aims: The prevalence of artificially administered nutrition and hydration (AANH) in different age groups among patients with advanced cancer remains unknown. The present study investigated the current utilization of AANH according to age groups in palliative care units. Methods: This was a secondary analysis of a prospective cohort study. We obtained information on primary nutritional administration routes during the first week of admission and data on the averaged calorie sufficiency rate or total calorie intake on the 7th day of admission. Patients were divided into five age groups (18–39, 40–59, 60–74, 75–89, and 90- years). Among patients receiving AANH, the proportions of higher-calorie AANH were compared between the five age groups. Results: A total of 1453 patients were included. The proportion of patients categorized as receiving nutrition and hydration via the parenteral route was the highest in the 18–39 and 40–59 groups (52.4 and 41.1%, respectively). Among patients receiving AANH (n = 534), the proportions of patients categorized into the

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.

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. 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. 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. 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.

Context Cardiopulmonary resuscitation is one of the most important end-of-life care decisions. However, the experience of bereaved families during code status discussions is not well documented. Objective The aims of this study were to describe the degree of emotional distress of bereaved families when discussing code status, identify their perceived areas for improvement and determine associated factors. Methods This study is part of a nationwide post-bereavement survey, the Japan Hospice and Palliative care Evaluation 3 (J-HOPE3) study. Questionnaires were sent to the relatives of cancer patients who had died in palliative care units in Japan in 2014. Results From an analysis of 338 questionnaires, 37% of families reported high emotional distress during code status discussions and 32% reported a need for improvement. Multiple logistic regression analyses revealed the following were associated with high-level distress: the family had hoped for the miraculous and spontaneous recovery of the patient (odds ratio [OR] 2.4, 95% confidence interval [CI] 1.31—4.43, P = 0.0049), the family felt they could not voice their opinion about Cardiopulmonary resuscitation (OR 2.07, CI 1.12—3.81, P = 0.02), or the physician failed to adapt the explanation to the family's preparation level (OR 0.36, CI 0.18—0.68, P = 0.0015). Factors identified for improvement were: holding discussions in a relaxing atmosphere conducive to questioning (OR 0.36, CI 0.16-0.80, P = 0.012), and ensuring the physician adapted the explanation to the family's preparation level (OR 0.47, CI 0.23-0.96, P = 0.037). Conclusion We recommend the development of educational programs for code status discussions to improve the experience of bereaved family members.

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

The study aim was to clarify the essential competencies for psychologists in palliative care teams. A nationwide, multicentre cross-sectional survey was conducted. A 32-item questionnaire assessing endorsement of potential competencies was completed by 70 patients and/or families, 101 consulting personnel, 747 members of palliative care teams and 203 mental health providers. All 32 competencies were judged as essential. Of the 32 items, 9 and 28 items were endorsed by >95% and 80% of participants, respectively. The most frequently endorsed essential competency was ability to coordinate with other professionals in palliative care teams. Some competencies considered essential seemed specific to oncology and medical settings. The results suggest the need for specific guidance for psychologists working in palliative care teams and the development of clinical oncology training programmes and/or systems for psychologists.

Parenteral morphine is widely used for dyspnea of imminently dying cancer patients (terminal dyspnea). However, the efficacy of other opioids such as oxycodone remains largely unknown.To explore the efficacy of parenteral oxycodone vs. morphine by continuous infusion over 24 hours in cancer patients with terminal dyspnea.This was a pre-planned subgroup analysis of a multicenter prospective observational study. Inclusion criteria were advanced cancer patients admitted to palliative care units, Eastern Cooperative Oncology Group performance status = 3-4, and a dyspnea intensity ≥2 on the Integrated Palliative care Outcome Scale (IPOS) for which oxycodone or morphine was initiated by continuous infusion. We measured dyspnea IPOS scores over 24 hours.We analyzed 164 patients who received oxycodone (n = 26) and morphine (n = 138) for dyspnea (median survival = 5 days). The mean age was 70 years, 58 patients (35%) had lung cancer, and 97 (59%) had lung metastases. Complete case analysis revealed that mean dyspnea IPOS scores decreased from 3.0 (standard deviation = 0.7) to 1.5 (0.7) in the oxycodone group (difference in means = 1.5; P 0.001), and from 2.9 (0.7) to 1.6 (1.0) in the morphine group (difference in means = 1.3; P 0.001). No significant between-group differences existed in the IPOS scores at 24 hours (P = 0.753). Adverse events were seen in no and 5 patients in the oxycodone and morphine groups, respectively.Parenteral oxycodone may be equally effective and safe as morphine in the treatment of terminal dyspnea in cancer patients. Future randomized controlled trials should confirm the efficacy and safety of opioids other than morphine for terminal dyspnea.

Background: Predictive factors for the development of dyspnea have not been reported among terminally ill cancer patients. Objective: This current study aimed to identify the predictive factors attributed to the development of dyspnea within 7 days after admission among patients with cancer. Methods: This was a secondary analysis of a multicenter prospective observational study on the dying process among patients admitted in inpatient hospices/palliative care units. Patients were divided into 2 groups: those who developed dyspnea (development group) and those who did not (non-development group). To determine independent predictive factors, univariate and multivariate analyses using the logistic regression model were performed. Results: From January 2017 to December 2017, 1159 patients were included in this analysis. Univariate analysis showed that male participants, those with primary lung cancer, ascites, and Karnofsky Performance Status score (KPS) of ≤40, smokers, and benzodiazepine users were significantly higher in the development group. Multivariate analysis revealed that primary lung cancer (odds ratio [OR]: 2.80, 95% confidence interval [95% CI]: 1.47-5.31; p = 0.002), KPS score (≤40) (OR: 1.84, 95% CI: 1.02-3.31; p = 0.044), and presence of ascites (OR: 2.34, 95% CI: 1.36-4.02; p = 0.002) were independent predictive factors for the development of dyspnea. Conclusions: Lung cancer, poor performance status, and ascites may be predictive factors for the development of dyspnea among terminally ill cancer patients. However, further studies should be performed to validate these findings.

Background Advance care planning (ACP) is an important factor that affects the quality of end-oflife. However, health care providers are not able to sufficiently support patients' ACP due to their lack of knowledge and psychological burden. This study investigated how the knowledge, attitudes, and practices of health care providers who completed a communication skills training (CST) program for ACP discussion changed before and after the course. Methods Health care providers who participated in the Education for Implementing End of Life Discussion (E-FIELD) CST training program in Japan were surveyed at three time points: before, immediately after, and 6 months after training. The number of participants who completed all three surveys was 306. Knowledge, confidence, communication difficulties, number of discussions and completions of ACP were measured using a questionnaire. Results Participants' knowledge and confidence increased right after training compared with before training. The number of ACP discussions and completions increased significantly 6 months after training compared with before training and difficulties tended to decrease. Physicians maintained their confidence, which increased immediately after training until 6 months after training and their number of ACP discussions and completions also increased significantly 6 months after training compared with before training. Conclusions The CST program for ACP, E-FIELD, has the potential to increase the knowledge, confidence, and number of ACP discussions and completions used by physicians, nurses, and social workers, and also lower their difficulties.

Background Adult patients with hematologic malignancies are less likely to receive palliative care and more likely to accept intensive anti-cancer treatments until end-of-life than those with solid tumors, but limited data are available regarding the quality of end-of-life care (EOLC) for children with hematologic malignancies. To improve the quality of EOLC for children with hematologic malignancies, the aims of this study were (i) to compare intensive EOLC between children with hematologic malignancies and those with solid tumors; and (ii) to describe factors associated with intensive EOLC in children with hematologic malignancies. Methods We retrospectively reviewed 0- to 18-year-old patients with cancer, who died in hospital between April 2012 and March 2016 in Japan using the Diagnosis Procedure Combination per-diem payment system. Indicators of intensive inpatient EOLC were defined as intensive care unit admission, cardiopulmonary resuscitation (CPR), intubation and/or mechanical ventilation, hemodialysis, or extra-corporeal membrane oxygenation in the last 30 days of life, or intravenous chemotherapy in the last 14 days. We determined factors associated with intensive EOLC using regression models. Data regarding use of blood transfusion were also obtained from the database. Results Among 1199 patients, 433 (36%) had hematological malignancies. Children with hematologic malignancies were significantly more likely than those with solid tumors to have intubation and/or mechanical ventilation (37.9% vs. 23.5%), intensive care unit admission (21.9% vs. 7.2%), CPR (14.5% vs. 7.7%), hemodialysis (13.2% vs. 3.1%) or extra-corporeal membrane oxygenation (2.5% vs. 0.4%) in their last 30 days, or intravenous chemotherapy (47.8% vs. 18.4%; all P Conclusion Children with hematologic malignancies are more likely to receive intensive EOLC compared to those with solid tumors. A younger age and shorter hospital stay might be associated with intensive EOLC in children with hematologic malignancies.

The development of palliative care services is a public health priority. The Japanese Cancer Control Act has been promoting palliative care services nationwide for over 10 years.To evaluate long-term changes in the structure and processes of hospital palliative cancer care services nationwide.This was an observational study using three representative questionnaire surveys between 2008 and 2018. The questionnaire consisted of domains on the structure and process regarding hospital palliative cancer care services. The changes over time were assessed using the MacNemar test. The differences between groups, namely community hospitals and designated cancer hospitals, were determined using χWe analyzed changes over time from 281 designated cancer hospitals and compared the services between 1395 community hospitals and 380 designated cancer hospitals. The development of the structure and processes for designated cancer hospital's palliative cancer care services was greater for 10 years including the number of Palliative Care Consultation Teams (PCTs) with more than 50 patient referrals annually (from 2010 to 2018: 76.2% to 85.4%, P 0.001). The palliative cancer care services of community hospitals were poorly prepared compared with designated cancer hospitals in 2018, such as the "direct medical care by any member of the Palliative Care Consultation Team at least 3 times a week (41.7% vs. 81.3%; P 0.001).Hospital palliative cancer care services in designated cancer hospitals have developed significantly from 2008 to 2018. Building a system to promote palliative care services in community hospitals is a challenge for the next decade.

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.

A conceptual framework for advance care planning is lacking in societies like Japan's valuing family-centered decision-making.A consensus definition of advance care planning with action guideline adapted to Japanese society.We conducted a multidisciplinary modified Delphi study 2020-2022. Thirty physicians, 10 healthcare and bioethics researchers, six nurses, three patient care managers, three medical social workers, three law experts, and a chaplain evaluated, in 7 rounds (including two web-based surveys where the consensus level was defined as ratings by ≥70% of panelists of 7-9 on a nine-point Likert scale), brief sentences delineating the definition, scope, subjects, and action guideline for advance care planning in Japan.The resulting 29-item set attained the target consensus level, with 72%-96% of item ratings 7-9. Advance care planning was defined as "an individual's thinking about and discussing with their family and other people close to them, with the support as necessary of healthcare providers who have established a trusting relationship with them, preparations for the future, including the way of life and medical treatment and care that they wish to have in the future." This definition/action guideline specifically included support for individuals hesitant to express opinions to develop and express preparations for the future.Adaptation of advance care planning to Japanese culture by consciously enhancing and supporting individuals' autonomous decision-making may facilitate its spread and establishment in Japan and other societies with family-centered decision-making cultures.

ObjectivesThe goal of palliative and supportive care is to improve patients’ quality of life (QoL). Patient-reported outcome measures (PROMs) are the gold standard for the assessment of QoL and symptoms; however, when self-reporting is complicated, PROMs are often substituted with proxy-reported outcome measures, such as clinician-reported outcome measures. The objective of this study was to assess the validity and reliability of the Japanese version of the Integrated Palliative care Outcome Scale (IPOS) for staff (IPOS-Staff).MethodsThis multicenter, cross-sectional observational study was conducted concurrently with the validation of the IPOS for patients (IPOS-Patient). Japanese adult patients with cancer and their staff were recruited. We assessed the characteristics of the patients and staff members, missing values, prevalence, and total IPOS scores. For the analysis of criterion validity, intra-rater, and inter-rater reliability, we calculated intraclass correlations (ICCs).ResultsOne hundred and forty-three patients completed the IPOS-Patient, and 79 medical staff members completed the IPOS-Staff. The most common missing values from IPOS-Staff were Family Anxiety (3.5%) and Sharing Feelings (3.5%). Over half of the patients scored themselves moderate or worse for Poor Mobility, Anxiety, and Family Anxiety, while staff members scored patients moderate or worse for Weakness, Anxiety, and Family Anxiety. For criterion validity (patient–staff agreement) as well as intra-rater and inter-rater reliability, ICCs ranged from 0.114 (Sharing Feelings) to 0.826 (Nausea), 0.720 (Anxiety) to 0.933 (Nausea), and −0.038 (Practical Problems) to 0.830 (Nausea), respectively.Significance of resultsThe IPOS-Staff is easy to respond to; it has fair validity and reliability for physical items but poor for psycho-social items. By defining the context and objectives of its use and interpretation, the IPOS-Staff can be a useful tool for measuring outcomes in adult patients with cancer who cannot complete self-evaluations.