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End-of-life patients with cancer may find expressing their symptoms difficult if they can no longer communicate verbally because of deteriorating health. In this study, we assessed these symptoms using machine learning, which has excellent predictive capabilities and has recently been applied in healthcare. We performed a retrospective clinical survey involving 213 patients with cancer from August 2015 to August 2016. We divided the reported symptoms into two groups—visible and nonvisible symptoms. We used decision tree analysis, an analytical machine learning method that organizes and analyzes information in the form of a tree diagram to visually represent the information structure. Our machine learning model used patient background data and visible symptoms to predict nonvisible symptoms: pain, dyspnea, fatigue, drowsiness, anxiety, delirium, inadequate informed consent, and spiritual issues. The highest and/or lowest values for prediction accuracy, sensitivity, and specificity were 88.0%/55.5%, 84.9%/3.3%, and 96.7%/24.1%, respectively. This work will facilitate better assessment and management of symptoms in patients with cancer. This study was the first to predict nonvisible symptoms using decision tree analyses for patients with cancer receiving palliative care. Notably, applications based on our results may assess symptoms to the same extent as healthcare professionals. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: There is ongoing debate on whether continuous deep sedation (CDS) for psycho-existential suffering is appropriate. Objective: We aimed to (1) clarify clinical practice of CDS for psycho-existential suffering and (2) assess its impact on patients' survival. Methods: Advanced cancer patients admitted to 23 palliative care units in 2017 were consecutively enrolled. We compared patients' characteristics, CDS practices, and survival between those receiving CDS for psycho-existential suffering ± physical symptoms and only for physical symptoms. Results: Of 164 patients analyzed, 14 (8.5%) received CDS for psycho-existential suffering ± physical symptoms and only one of them (0.6%) solely for psycho-existential suffering. Patients receiving CDS for psycho-existential suffering, compared with those only for physical symptoms, were likely to have no specific religion (p = 0.025), and desired (78.6% vs. 22.0%, respectively; p < 0.001) and requested a hastened death more frequently (57.1% vs. 10.0%, respectively; p < 0.001). All of them had a poor physical condition with limited estimated survival, and mostly (71%) received intermittent sedation before CDS. CDS for psycho-existential suffering caused greater physicians' discomfort (p = 0.037), and lasted for longer (p = 0.029). Dependency, loss of autonomy, and hopelessness were common reasons for psycho-existential suffering that required CDS. The survival time after CDS initiation was longer in patients receiving it for psycho-existential suffering (log-rank, p = 0.021). Conclusion: CDS was applied to patients who suffered from psycho-existential suffering, which often associated with desire or request for a hastened death. Further studies and debate are warranted to develop feasible treatment strategies for psycho-existential suffering. [ABSTRACT FROM AUTHOR]

Background: The objective prognostic score (OPS) needs to be modified to reflect practical palliative care circumstances. Objectives: We aimed to validate modified models of OPS with few or no laboratory tests for patients with advanced cancer. Design: An observational study was performed. Setting/Subjects: A secondary analysis of an international, multicenter cohort study of patients in East Asia was performed. The subjects were inpatients with advanced cancer in the palliative care unit. Measurements: We developed two modified OPS (mOPS) models to predict two-week survival: mOPS-A consisted of two symptoms, two objective signs, and three laboratory results, while mOPS-B consisted of three symptoms, two signs, and no laboratory data. We compared the accuracy of the prognostic models using sensitivity, specificity, and area under the receiver operating characteristic curve (AUROC). Calibration plots for two-week survival and net reclassification indices (NRIs) were compared for the two models. Survival differences between higher and lower score groups of each model were identified by the log-rank test. Results: We included a total of 1796 subjects having median survival of 19.0 days. We found that mOPS-A had higher specificity (0.805–0.836) and higher AUROCs (0.791–0.797). In contrast, mOPS-B showed higher sensitivity (0.721–0.725) and acceptable AUROCs (0.740–0.751) for prediction of two-week survival. Two mOPSs showed good concordance in calibration plots. Considering NRIs, replacing the original OPS with mOPSs improved overall reclassification (absolute NRI: 0.47–4.15%). Higher score groups of mOPS-A and mOPS-B showed poorer survival than those of lower score groups (p < 0.001). Conclusions: mOPSs used reduced laboratory data and had relatively good accuracy for predicting survival in advanced cancer patients receiving palliative care. [ABSTRACT FROM AUTHOR]

Background: Little is known about accuracy and confidence of clinicians' prediction of survival (CPS) in East-Asian countries. Objective: We aimed to examine accuracy of CPS for 7-, 21-, and 42-day survival in palliative inpatients and its association with prognostic confidence. Design: An international prospective cohort study in Japan (JP), Korea (KR), and Taiwan (TW). Setting/Subjects: Subjects were inpatients with advanced cancer admitted to 37 palliative care units in three countries. Measurements: Discrimination of CPS was investigated through sensitivity, specificity, overall accuracy, and area under the receiver operating characteristics curves (AUROCs) according to 7-, 21-, and 42-day survival. The accuracies of CPS were compared with those of Performance Status-based Palliative Prognostic Index (PS-PPI). Clinicians were instructed to rate confidence level on a 0–10-point scale. Results: A total of 2571 patients were analyzed. The specificity was highest at 93.2–100.0% for the 7-day CPS, and sensitivity was highest at 71.5–86.8% for the 42-day CPS. The AUROCs of the seven-day CPS were 0.88, 0.94, and 0.89, while those of PS-PPI were 0.77, 0.69, and 0.69 for JP, KR, and TW, respectively. As for 42-day prediction, sensitivities of PS-PPI were higher than those of CPS. Clinicians' confidence was strongly associated with the accuracy of prediction in all three countries (all p-values <0.01). Conclusions: CPS accuracies were highest (0.88–0.94) for the seven-day survival prediction. CPS was more accurate than PS-PPI in all timeframe prediction except 42-day prediction in KR. Prognostic confidence was significantly associated with the accuracy of CPS. [ABSTRACT FROM AUTHOR]

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 postbereavement 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 postbereavement 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, 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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Aim: To explore the unclear association between temporary discharge home from the palliative care unit and achievement of good death, in the background of increases in discharge from the palliative care unit. Association between experiences and circumstances of patient and family and duration of temporary discharge was also examined. Methods: This study was a secondary analysis of data from a nationwide post‐bereavement survey. Results: Among 571 patients, 16% experienced temporary discharge home from the palliative care unit. The total good death inventory score (p <.05) and sum of 10 core attributes (p <.05) were significantly higher in the temporarily discharged and stayed home ≥2 weeks group. Among all attributes, "Independent in daily activities" (p <.001) was significantly better in the temporarily discharged and stayed home ≥2 weeks group. Regarding the experience and circumstance of patient and family, improvement of patient's appetite (p <.05), and sleep (p <.05) and peacefulness (p <.05) of family caregivers, compared to the patient being hospitalized, were associated with longer stay at home after discharge. Conclusions: Patient's achievement of good death was better in the temporarily discharged and stayed home longer group, but this seemed to be affected by high levels of independence of the patient. Temporary discharge from the palliative care unit and staying home longer was associated with improvement of appetite of patients and better sleep and mental health status of family caregivers. Discharging home from palliative care unit is worth being considered even if it is temporary. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Purpose: Few large-scale studies have focused on the prevalence of symptoms and signs during the last days of patients diagnosed with advanced cancer. Identifying the patterns of specific symptoms according to cancer type is helpful to provide end-of-life care for patients with advanced cancer. We investigated the prevalence and severity of symptoms and signs associated with impending death in patients with advanced cancer.Methods: In this secondary analysis of an international multicenter cohort study conducted in three East Asian countries, we compared the severity of symptoms and signs among dying patients in the last 3 days of life according to the type of primary cancer using one-way analysis of variance (ANOVA). Post hoc analysis was conducted for multiple comparisons of each symptom according to the type of primary cancer.Results: We analyzed 2131 patients from Japan, Korea, and Taiwan. The prevalence of most symptoms and signs were relatively stable from 1 week after admission to the last 3 days of life. According to cancer type, edema of the lower extremities was the most common symptom and fatigue/ ascites were the most severe symptoms in digestive tract cancer. For lung cancer, respiratory secretion was the most prevalent and dyspnea/respiratory secretion were the most severe symptoms.Conclusion: We demonstrated the prevalence and severity of symptoms and signs associated with the impending death of patients with advanced cancer in East Asia. Our study can enable clinicians to recognize the specific symptoms and signs at the very end of life. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Artificial hydration (AH) is a challenging issue in terminally ill patients with cancer, because it influences patients' symptoms control, quality of life, and quality of dying (QOD). To date, it is not clear how much AH supply is proper for imminently dying patients. This study aimed to investigate the association between the amount of AH and QOD. Methods: This study is part of the East Asian Collaborative Cross‐Cultural Study to Elucidate the Dying Process (EASED) conducted in Japan, Korea, and Taiwan from January 2017 to September 2018. Patients' demographics, symptoms, and managements on admission to palliative care units (PCUs) and before death were recorded. The AH amount was classified into different groups by 250‐mL intervals to compare their difference. The Good Death Scale (GDS) was used to measure QOD, with patients classified into higher or lower QOD groups using GDS = 12 as the cutoff point. We used logistic regression analysis to assess the association between AH amount and QOD. Results: In total, 1530 patients were included in the analysis. Country, religion, spiritual well‐being, fatigue, delirium, dyspnea, AH, and antibiotics use before death were significantly associated with QOD. After conducting regression analysis, patients administered with 250 to 499 mL AH had significantly better QOD (odds ratio, 2.251; 95% confidence interval, 1.072‐4.730; P =.032) than those without AH. Conclusions: AH use impacts the QOD of terminally ill patients with cancer admitted to PCUs. Communication with patients and their families on appropriate AH use has a positive effect on QOD. Lay Summary: Our prospective cross‐cultural multicenter study aims to investigate the relationship between artificial hydration (AH) amount and quality of dying among terminally ill patients with cancer.The findings reveal that country, religion, spiritual well‐being, fatigue, delirium, dyspnea, AH, and antibiotics use before death were significantly associated with quality of death (QOD).After multivariable logistic regression, patients administered with AH amount 250 to 499 mL had significantly better QOD (odds ratio, 2.251; 95% confidence interval, 1.072‐4.730; P =.032) than those without AH.Communication with patients and their families regarding AH is recommended as it may help them be better prepared for the end‐of‐life stage and achieve a good death. Artificial hydration (AH) use affects the quality of death (QOD) of terminally ill patients with cancer cared for in palliative care units. Patients administered 250 to 499 mL of AH have significantly better QOD (odds ratio, 2.251; 95% confidence interval, 1.072‐4.730; P =.032) than those without AH. [ABSTRACT FROM AUTHOR]

Purpose: No study has been conducted to compare the clinicians' prediction of survival (CPS) with Palliative Prognostic Scores (PaP) across countries. We aimed to compare the performance of the CPS in PaP (PaP-CPS), the PaP without the CPS, and the PaP total scores in patients with advanced cancer in three East Asian countries.Methods: We compared the discriminative accuracy of the three predictive models (the PaP-CPS [the score of the categorical CPS of PaP], the PaP without the CPS [sum of the scores of only the objective variables of PaP], and the PaP total score) in patients admitted to palliative care units (PCUs) in Japan, Korea, and Taiwan. We calculated the area under the receiver operating characteristic curve (AUROC) for 30-day survival to compare the discriminative accuracy of these three models.Results: We analyzed 2,072 patients from three countries. The AUROC for the PaP total scores was 0.84 in patients in Japan, 0.76 in Korea, and 0.79 in Taiwan. The AUROC of the PaP-CPS was 0.82 in patients in Japan, 0.75 in Korea, and 0.78 in Taiwan. The AUROC of the PaP without the CPS was 0.75 in patients in Japan, 0.66 in Korea, and 0.67 in Taiwan.Conclusion: The PaP total scores and the PaP-CPS consistently showed similar discriminative accuracy in predicting 30-day survival in patients admitted to PCUs in Japan, Korea, and Taiwan. It may be sufficient for experienced clinicians to use the CPS alone for estimating the short-term survival (less than one month) of patients with far-advanced cancer. The PaP may help to improve prognostic confidence and further reduce subjective variations. [ABSTRACT FROM AUTHOR]

Background: Symptoms are not typically part of established various prognostic factors and scoring systems but are among the most frequently assessed issues in patient care. Objectives: To evaluate that, changes in symptoms can provide additional useful prognostic information. Design: A secondary analysis of an international cohort study in Japan, Korea, and Taiwan. Setting/Subjects: Subjects were adult patients with advanced cancer (n = 2074) who were admitted to 37 palliative care units (PCUs) in 3 countries from January 2017 to September 2018. Measurements: Symptoms (dyspnea, fatigue, dry mouth, and drowsiness) were assessed at admission and one-week later. Dyspnea was assessed by the presence of resting and exertional dyspnea, whereas other symptoms were assessed using the Integrated Palliative care Outcome Scales (IPOS) (range 0–4). For analysis, we grouped patients by symptom change, as either Improved, Stable, or Worsened (by having at least a one increment decrease, no change, or at least a one increment increase, respectively). Results: Worsened groups had the shortest survival (median survival 15–21 days) compared with those with Improved (median survival 23–31 days) and Stable symptoms (median survival 27–29 days) across all four symptoms (dyspnea, fatigue, dry mouth, and drowsiness). Survival differences were statistically significantly different across all three groups for all symptoms (all p < 0.001). Interestingly, Improved symptoms were associated with similar survival compared with Stable groups, with no statistical differences. Conclusions: Worsened symptoms at one week after admission were useful predictors of survival for patients with advanced cancer in PCUs during the final weeks of life. Longitudinal assessments are needed to reflect passage of time as well as impact of treatments. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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). [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Accurately predicting impending death is essential for clinicians to clarify goals of care. We aimed to develop diagnostic models to predict death ≤3 days in cancer patients. Methods: In this multicenter cohort study, we consecutively enrolled advanced cancer patients admitted to 23 inpatient hospices in 2017. Fifteen clinical signs related to impending death were documented daily from the day when the Palliative Performance Scale (PPS) declined to ≤20–14 days later. We conducted recursive partitioning analysis using the entire data set and performed cross‐validation to develop the model (prediction of 3‐day impending death‐decision tree [P3did‐DT]). Then, we summed the number of systems (nervous/cardiovascular/respiratory/musculoskeletal), where any sign was present to underpin P3did score (range = 0–4). Results: Data following PPS ≤20 were obtained from 1396 of 1896 inpatients (74%). The mean age was 73 ± 12 years, and 399 (29%) had gastrointestinal tract cancer. The P3did‐DT was based on three variables and had four terminal leaves: urine output (u/o) ≤200 ml/day and decreased response to verbal stimuli, u/o ≤200 ml/day and no decreased response to verbal stimuli, u/o >200 ml/day and Richmond Agitation‐Sedation Scale (RASS) ≤−2, and u/o >200 ml/day and RASS ≥−1. The 3‐day mortality rates were 80.3%, 53.3%, 39.9%, and 20.6%, respectively (accuracy = 68.3%). In addition, 79.6%, 62.9%, 47.2%, 32.8%, and 17.4% of patients with P3did scores of 4, 3, 2, 1, and 0, respectively, died ≤3 days. Conclusion: We successfully developed diagnostic models for death ≤3 days. These may further help clinicians predict impending death and help patients/families prepare for their final days. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Context: Some patients require continuous deep sedation (CDS) for refractory symptoms despite intensive palliative care. The principle of proportionality is proposed on the basis of clinical decisions, but no validated tools to assist such decision making are available. Aim: To develop a scoring system to determine whether CDS is proportionally appropriate. Subjects and Methods: A secondary analysis of a nationwide questionnaire survey of Japanese palliative care specialists was performed. Physicians were asked to rate the degree that they believed CDS to be appropriate in a total of 27 scenarios based on a combination of 3 factors with 3 levels: (1) the estimated survival (days, weeks, and months), (2) the patient's wish (clear and consistent, somewhat unclear and/or inconsistent, and unclear or inconsistent), and (3) confidence in refractoriness of the symptom (definite, probable, and unsure). Based on logistic regression analyses, a scoring system with two formulas (the proportionality score to determine that continuous deep sedation is appropriate [ProScoreCDS-appropriate] and proportionality score to determine that continuous deep sedation is inappropriate [ProScoreCDS-inappropriate]) to predict specialists' decision that CDS is appropriate or inappropriate was developed. The accuracy of the formulas was investigated. Results: Among 695 palliative care specialists, 469 returned the questionnaire (response rate, 69%) and 440 were analyzed. Logistic regression analyses identified that all three factors were significantly associated with physicians' decisions about the appropriateness of performing CDS. Using weighted value, the total score ranged from 3 to 67 for ProScoreCDS-appropriate, and 3 to 27 for ProScoreCDS-inappropriate. The area under the curve (AUC) values of ProScoreCDS-appropriate and ProScoreCDS-inappropriate were 0.88 (95% confidence interval [CI], 0.87–0.89) and 0.81 (95% CI, 0.81–0.82), respectively. Using cutoff points of 41 and 14, sensitivity and specificity were 68.6% and 88.9% for ProScoreCDS-appropriate and 67.7% and 76.0% for ProScoreCDS-inappropriate, respectively. Conclusion: A scoring system to determine whether CDS is proportionally appropriate can be constructed, and a further study to develop a clinical tool is promising. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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

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. [ABSTRACT FROM AUTHOR]

Background: Well detection of the symptoms and signs of dying patients is essential for providing proper palliative care. Our goal is to evaluate the predominant symptoms and compare the changes in dying patients with digestive tract cancer in Japan, South Korea, and Taiwan.Methods: A total of 1057 cancer patients aged 18 years or older admitted in palliative care units with locally advanced or metastatic gastroesophageal, colorectal, and pancreaticobiliary cancer were enrolled from January 2017 to March 2019. The severity of physical and psychological symptoms and signs assessed by physicians and/or nurses upon admission, 1 week after admission, and within 3 days of death, was compared according to cancer type and country of origin.Results: Among the 338 gastroesophageal, 358 pancreaticobiliary, and 361 colorectal cancer patients, 894 (93.1%) died during the observation period. Fatigue was the most severe symptom in all cancer groups before dying. Dyspnea, fatigue, drowsiness, and ascites improved after hospitalization albeit they worsened prior to death. In particular, ascites was a marked symptom in patients with pancreaticobiliary cancer. Delirium and hallucination gradually worsened during the period leading to death. Differences in manifestations with respect to the country of origin were not significant.Conclusion: We identified the most prevalent signs and symptoms in patients from East Asia who were dying from digestive tract cancers. Proper management, based on these prevalent signs and symptoms during the dying period, plays a vital role in providing adequate palliative care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]