Search

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]

Context Policymaking plays an important role in national palliative care services. The Japanese Cancer Control Act was implemented in 2006. Objectives To evaluate changes in the structure and processes of palliative care services after implementation of the Cancer Control Act. Methods We conducted annual nationwide surveys in designated cancer care hospitals (DCCHs, n = 349) between 2008 and 2010. The 65-item questionnaire was divided into seven domains: institutional framework, information to patient and family, practice of palliative care, activities of the palliative care teams (PCTs), members of PCTs, regional medical cooperation, and education. Increasing trends were tested using generalized estimating equation models. Results The response rates were ≥99%. All domains showed an increasing trend ( P < 0.001). There were significant increases in full-time PCT physicians (27.4%–45.7%, P trend < 0.001), full-time PCT nurses (38.9%–88.0%, P trend < 0.001), and the median number of annual referrals to PCTs (60–80 patients, P < 0.001). Essential drugs were available in most DCCHs from baseline. Although outpatient clinics increased significantly (27.0%–58.9%, P trend < 0.001), community outreach programs did not (9.0%–12.6%, P = 0.05). Basic education was actively introduced for in-hospital physicians and nurses (78.2% and 91.4% in 2010), but often unavailable for regional health care providers (basic education for regional physicians and nurses: 63.9% and 71.1% in 2010). Conclusion The Cancer Control Act promoted the development and enhancement of palliative care services in DCCHs. Regional medical cooperation and education are the future challenges of palliative care in Japan. [ABSTRACT FROM AUTHOR]

The article discusses a study aimed at developing the first consensus syllabus of palliative medicine for undergraduate medical education in Japan using a modified Delphi method. The three innovative processes used included email discussion and panel meeting; evaluation of the degree of difficulty; and enrolling of patients, family members and medical students as panelists. Also discussed are the three differences in Japanese syllabus as compared with the curriculum in the Great Britain and USA.

Abstract: Nausea and vomiting are distressing symptoms in advanced cancer patients. The causes of nausea and vomiting are multifactorial. Among the causes is opioid therapy, the mainstay of cancer pain management. When nausea or other opioid side effects occur, it may hamper pain management and undermine the quality of life of cancer patients. Risperidone exerts an antiemetic effect in animals, but there has been no clinical report on its antiemetic activity. We conducted a retrospective chart review to examine whether risperidone is useful for opioid-induced nausea and vomiting in advanced cancer patients (n =20). Risperidone was given as doses of 1mg once a day. Complete response was observed in 50% of patients (10/20) for nausea and 64% (7/11) for vomiting. Sedation (n =2) was documented as an adverse effect. This observation suggests that risperidone can be an effective antiemetic drug in the treatment of refractory opioid-induced nausea and vomiting in advanced cancer patients. [Copyright &y& Elsevier]

Although sedation for symptom relief in terminally ill patients has been the focus of recent medical studies, the interpretation of research findings is difficult due to the confusing terminology. To clarify the agreements and inconsistencies in the definitions of sedation, a systematic review was performed. We searched the literature through MEDLINE from 1990 to July 2001. A total of 7 articles met the inclusion criteria. All studies included the use of sedative medications or the intention to reduce patient consciousness as an essential element of sedation. All but one study explicitly described that the primary aim of sedation was symptom palliation. Three definitions stated that target symptoms were severe, and 4 articles reported the refractory nature of the distress. On the other hand, there were marked inconsistencies in the definition of the degree of sedation, duration, pharmacological properties of medications used, target symptoms, and target populations. This review suggests that sedation includes two core factors: the presence of severe suffering refractory to standard palliative management, and the use of sedative medications with the primary aim to relieve distress. Thus, “palliative sedation therapy” can be defined as “the use of sedative medications to relieve intolerable and refractory distress by the reduction in patient consciousness.” The marked inconsistencies in the definition of sedation should be considered to be subcategories of palliative sedation therapy, and we recommend that researchers define the degree of sedation, duration, pharmacological properties of medications, target symptoms, and target populations in future studies. This clarification of terminology will contribute to improving the accuracy and depth of sedation research. [Copyright &y& Elsevier]

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]

Background: Agitated delirium is often observed in terminal patients with cancer. To clarify the risk factors for agitated delirium in terminal patients with cancer, we conducted a retrospective chart review of 126 patients with cancer who died at a university hospital in 2008. Method: As a working definition, we define agitated delirium as a score of 2 or more in item 9 of the Memorial Delirium Assessment Scale with diurnal variation. Results: The results were as follows: agitated delirium was observed in 49 (42%) of the 115 patients, and it occurred within the last week before death in 49% of the patients. Univariate analysis revealed older age, male gender, smoking history, lung cancer, diabetes, and high C-reactive protein (CRP) value as major risk factors, while dendritic analysis revealed lung cancer, high CRP value, diabetes, older age, and smoking history as key factors for predicting agitation. Conclusion: It is necessary to consider risk factors in order to categorize terminal patients with cancer into high- and low-risk groups and undertake possible counter-measures. [ABSTRACT FROM AUTHOR]

The patient was a 57-year-old woman with malignant pleural mesothelioma. She had a past history of anxiety neurosis but not had any history of otological diseases. On admission to our hospice (day 1), she complained of dyspnea and wheezing associated with the progression of her underlying disease. After we started oral betamethasone (2 mg/d), dyspnea was alleviated and the frequency of wheezing was reduced. On day 3, she began to experience musical hallucinations that were manifested in opera/piano concert music and a child's voice. The episodes of musical hallucinations occurred approximately 10 times a day and disappeared spontaneously within several minutes. She had not experienced these symptoms before. We reduced the dose of betamethasone to 1 mg/d, but the musical hallucinations continued. Then on day 11, we switched betamethasone (1 mg/d) to prednisolone (10 mg/d) and we then gradually tapered off prednisolone. The frequency of musical hallucinations decreased and she ceased to experience musical hallucinations on day 29. However, on day 40, her dyspnea was aggravated again, so we started treatment with prednisolone (5 mg/d). Dyspnea was alleviated and no musical hallucinations occurred. On Day 51, dyspnea was worsened and we switched prednisolone to betamethasone (4 mg/d), which she hoped to use. The betamethasone alleviated the dyspnea but she developed musical hallucinations that were similar to the previous episodes. The musical hallucinations disappeared spontaneously 4-5 days later without changing the betamethasone. Musical hallucinations never occurred thereafter. She later died due to the exacerbation of disease. [ABSTRACT FROM AUTHOR]

Abstract: Referral to palliative care units tends to be delayed. In Japan, the Cancer Control Act was established in 2006 to improve the quality of life of cancer patients by facilitating greater access to specialized palliative care services. The primary aims of this study were to clarify the family-perceived appropriateness of the timing of referral to palliative care units after the Cancer Control Act, and to determine the effects of the involvement of the palliative care team on the family-perceived referral timing. An additional aim of this study was to clarify the family-perceived usefulness of the palliative care team. A multicenter questionnaire survey was conducted on a sample of 661 bereaved family members of cancer patents who were admitted to palliative care units in Japan. A total of 451 responses were analyzed (response rate: 68%). Half of the bereaved family members regarded the timing of referrals to palliative care units as late or too late: too late (25%, n =114), late (22%, n =97), appropriate (47%, n =212), early (2.4%, n =11), and very early (1.8%, n =8). Among 228 families who reported that patients had commented on the timing of referrals, about half reported that the patients said the timing of referral was late or too late: too late (23%, n =52), late (21%, n =49), appropriate (48%, n =110), early (4.4%, n =10), and very early (3.1%, n =7). The families of patients with a palliative care team (n =191) tended to report less frequently that they believed the referral timing to be late or too late (43% vs. 51%, P =0.073); they also reported significantly less frequently that the patients said that the referral timing was late or too late (36% vs. 52%, P =0.037). The percentages of families who evaluated the palliative care team as useful or very useful were: 93% (symptom control), 90% (emotional support), 92% (family support), and 87% (care coordination). Half of the Japanese bereaved families of patients admitted to palliative care units regarded the timing of referrals as late or too late, and the rates identified in the survey were similar to those recorded before the Cancer Control Act. Involvement of the palliative care team, however, significantly correlated with lower family- and patient-perceived late referrals, and palliative care team activity was generally perceived as useful by the bereaved family members. Further dissemination of palliative care teams could contribute to better access to palliative care units and quality palliative care throughout the country. [Copyright &y& Elsevier]

In palliative care, steroids are often used to alleviate symptoms such as pain, fatigue, anorexia, nausea, and vomiting. Steroids occasionally induce psychiatric adverse effects. It has been reported that treatment of the steroid-induced psychiatric symptoms involves dosage reduction or discontinuation of steroid, and concomitant administration of psychotropics. There were few reports on effectiveness of treatment of steroid-induced psychiatric symptoms by switching from one steroid to the other. We experienced the case of 67-year-old man with malignant pleural mesothelioma and pulmonary emphysema who developed psychiatric symptoms after switching from oral prednisolone 10mg/day to intravenous betamethasone 2mg/day. He began to complain that “time repeats cycles of going and coming” and that he was “unable to distinguish between daytime and night,” and his face became expressionless. He gazed at familiar healthcare professionals as if seeing them for the first time, complaining: “I feel something obscure or strange in my head.” He was unable to remember events on the same or the previous day at all, and made no verbal response to questions by healthcare professionals. He did not know how to eat or use the toilet, and thus required assistance in daily life activities. He did not respond even when talked to by his family members. He continued gazing at them, sometimes saying: “Where am I now? Am I sick?” He behaved restlessly, repeating cycles of lying and sitting. The symptoms disappeared gradually after re-switching from intravenous betamethasone 2mg/day to oral prednisolone 10mg/day. “Steroid switching” may serve as a valid alternative treatment. [ABSTRACT FROM AUTHOR]

This study assessed whether verbal encoding and motoric encoding have different effects on the forgetting function for action sentences of patients with Alzheimer's disease. Subjects were 13 healthy elderly adults and 10 patients diagnosed with Alzheimer's disease. Three tasks were used: verbal tasks, subject-performed tasks, observed tasks. On the verbal tasks, subjects only heard the action sentences as read to them. On the subject-performed tasks, subjects heard, then performed each action sentence. On the observed tasks, subjects heard the action sentences read while observing the object mentioned in each action sentence. After presentation of each task, subjects conducted immediate and 30-min. delayed recall tests, and then a recognition test. Analysis indicated recall performance for subject-performed tasks was significantly better than that for verbal tasks and observed tasks at both immediate and delayed recall in each group. On the recognition test, carrying out the action had no effect, but for both groups recognition was enhanced by observing the object. Elderly adults performed significantly better than patients on all tasks of recall and recognition. However, the results indicate that patients with Alzheimer's disease can use multimodal resources from motoric encoding even if time passes. [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]

We made detailed research for relationships among physical condition, self-efficacy and psychological adjustment of patients with advanced cancer in Japan. The sample consisted of 85 (42 males and 43 females) advanced cancer patients. Interviews were conducted with some measurement scales including the Self-efficacy scale for Advanced Cancer (SEAC), and the Hospital Anxiety and Depression Scale (HADS). Karnofsky Performance Status (KPS) and medication status were also recorded from the evaluation by physicians. We used structural equation modeling (SEM) for statistical analysis. The analysis revealed that the model, including three self-efficacy subscales, depression, anxiety, KPS, meal-, liquid-intake, prognosis and three latent variables: ‘Self-efficacy’, ‘Emotional Distress’, and ‘Physical Condition,’ fit the data (chi-square(24)=28.67, p =0.23; GFI=0.93; CFI=0.98; RMSEA=0.05). In this model, self-efficacy accounted for 71% of the variance in emotional distress and physical condition accounted for 8% of the variance in self-efficacy. Overall, our findings suggest clearly that close relationships existed among physical condition, self-efficacy and emotional distress. That is, patients in good physical condition had a high self-efficacy, and patients with high self-efficacy were less emotionally distressed. These results imply that psychological intervention which emphasizes self-efficacy would be effective for advanced cancer patients. Copyright © 2002 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Studies on the appropriate use of urinary catheters for cancer patients at the end of life are limited. Aim: To clarify the differences among institutions in the prevalence of and indications for urinary catheterization of advanced cancer patients at palliative care units. Design: Pre-planned secondary analysis of a multicenter, prospective cohort study; East-Asian collaborative cross-cultural Study to Elucidate the Dying process (EASED). Setting/participants: This study enrolled consecutive advanced cancer patients admitted to palliative care units between January and December 2017. The final study group comprised 1212 patients from 21 institutions throughout Japan. Results: Out of the 1212 patients, 380 (31.4%; 95% confidence interval, 28.7%–34.0%) underwent urinary catheterization during their palliative care unit stay, and the prevalence of urinary catheterization in patients who died at palliative care units by institution ranged from 0.0% to 55.4%. When the 21 participating institutions were equally divided into three groups according to the institutional prevalence of catheterization, patients with difficulty in moving safely, exhaustion on movement, and restlessness or agitation were more likely to be catheterized in institutions with a high prevalence of catheterization than in those with a low or moderate prevalence (p < 0.008, p = 0.008, and p < 0.008, respectively). Conclusion: This study revealed that the institutional prevalence of urinary catheterization in advanced cancer patients at palliative care units widely varied. Further studies are needed to establish the appropriate use of urinary catheters, especially in patients with difficulty in moving safely, exhaustion on movement, and restlessness or agitation. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Bereaved individuals are known to have greater health risks, such as insomnia, excessive alcohol intake, and depression. However, few studies have investigated the relation between these risks and bereavement outcomes, namely complicated grief (CG) and major depressive disorder (MDD). This study aimed to assess the relation between insomnia, changes in alcohol consumption, and CG or MDD.Methods: A cross-sectional, self-report questionnaire survey was conducted between May and July 2014 on 20 acute hospitals, 133 inpatient palliative care units (PCUs), and 22 home hospice services. Questionnaires were sent to the bereaved family members identified by each institution.Results: Data were obtained from 814, 7,291, and 1,018 family members from acute hospitals, PCUs, and home hospice services, respectively. Significant associations were found between CG or MDD and all sleep condition symptoms (OR: 1.48-12.88; all p<0.0001) and between changes in alcohol intake (OR: 1.63-3.55; all p<0.0001).Limitations: The majority were family members who had lost a loved one to cancer in a PCU, the psychological health of nonresponders was unavailable, the results were based on self-report data, and no clinical assessment interviews were done; this could limit the generalizability of the findings.Conclusions: Overall, 14% and 17% of the respondents reported increased and decreased alcohol consumption, respectively, and 46-61% reported experiencing insomnia. Interestingly, both increase and decrease in alcohol intake after bereavement were risk factors of possible CG or MDD. These results suggest that assessing sleep conditions and alcohol consumption might help prevent severe psychological impairments in bereaved individuals. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Continuous deep sedation (CDS) is used to alleviate unbearable and otherwise refractory symptoms in patients dying of cancer. No data are available concerning CDS in children from Japan to date. This study primarily aimed to describe experience in CDS in child cancer patients at Kyoto University Hospital. The secondary aims were to identify the characteristics of patients who received CDS, and to assess ability in daily living at the end of life. A retrospective chart review was performed for child cancer patients who died at the institute between 2008 and 2017. The data of 35 patients were analyzed. Nine (26%) patients had received CDS. Indications for CDS were dyspnea (56%), agitation (22%), seizures (22%), and pain (11%). Midazolam was used in all nine cases. In eight (89%) patients, opioids were also prescribed. In seven (78%) patients, CDS was performed for < 48 hours. In all nine cases, consent was obtained from the parent(s) but not from the children. CDS was more likely in patients with solid tumors (p = 0.018) and those who had received no respite sedation (p = 0.002). Patients without central nervous system symptoms tended to maintain their capacity for oral intake and verbal communication until a few days prior to death. This is the first report on CDS in child cancer patients from Japan. In the CDS literature, cross-study differences are evident for incidence, target symptoms, duration, and the decision-making process. Further international discussion is warranted concerning indications for CDS and the decision-making process. [ABSTRACT FROM AUTHOR]

Background: Milnacipran is one of the classes of drugs that are serotonin and norepinephrine reuptake inhibitors (SNRIs). It is a promising drug for the treatment of neuropathic pain in patients with advanced cancer. However, we found that neuromuscular and somatosensory disorders occurred when milnacipran was used as an adjuvant analgesic. Case report: A 66-year-old woman with a history of neuropathic pain was given 15 mg of milnacipran after dinner. The next morning she developed stiffness of the fingers, numbness in the mandible, and the soles of her feet felt swollen. Milnacipran was discontinued and her symptoms disappeared immediately. We managed this case, which was becoming severe, by discontinuing milnacipran on early detection of symptoms. Discussion: This is the first report that demonstrates an adverse reaction of milnacipran when used as an analgesic adjuvant, and not as an antidepressant drug, for neuropathic pain in patients with advanced cancer. The analgesic effect of SNRIs will likely be used in the management of neuropathic pain in the future; however, clinicians should be aware of the early adverse reactions to these agents. [ABSTRACT FROM AUTHOR]

Purposes: Despite extensive debate on palliative sedation over the last few decades, no studies have explored longitudinal changes in physicians' opinion. Moreover, little is known about how physicians' opinions affect their practice. This study aimed to clarify (1) changes in palliative care specialists' opinions on palliative sedation and (2) the effects of these opinions on clinical practice.Methods: In 2000 and 2016, nationwide questionnaire surveys involving Japanese palliative care specialists were performed: measurement was based on agreement with opinions on palliative sedation. In 2016, the physicians reported their practice of continuous deep sedation (CDS) and answered their thoughts on what factors lead to a good death as factors potentially affecting their practice.Results: Of the 695 physicians enrolled in the 2016 survey, 469 responded (67%) and 417 were analyzed (60%). Compared with 54 physicians in 2000, the present respondents were more likely to consider palliative sedation is difficult to perform based on appropriate indications (ES = 0.84, P < 0.001), is unnecessary if conventional palliative care is performed sufficiently (ES = 0.30, P = 0.013), and may result in legal action (ES = 0.35, P = 0.003). The physicians' opinions more strongly affected their practice than their characteristics or thoughts on good death components.Conclusions: Recently, palliative care specialists in Japan tend to encounter more difficulties determining what conventional palliative care is and what palliative sedation is. They also fear legal ramifications. It is necessary to standardize methods of alleviating patients' suffering, to make CDS criteria clearer, and to create a legal basis that respects patients' rights at their end of life. [ABSTRACT FROM AUTHOR]

Purpose: Although little improvement has been made in the survival rate among young cancer patients over recent decades, whether they have achieved a good death has never been systematically explored. We aimed to clarify whether young cancer patients (aged 20-39 years) have achieved a good death, and compare their achievement with that of middle-aged patients (aged 40-64 years).Methods: We analyzed combined data of three nationwide, cross-sectional surveys of families of cancer patients who died at inpatient hospices in Japan (2007-2014). We measured 10 core items of the Good Death Inventory (GDI) short-version on a 7-point scale, and calculated rates of "agree/absolutely agree" and the mean scores.Results: We analyzed 245 and 5140 responses of families of young and middle-aged patients, respectively. Less than 60% of families of young patients reported "agree/absolutely agree" regarding 9 items, which included "feeling that one's life was completed" in 44 (18%; 95% confidence interval (CI) = 14-23%), "being independent in daily life" in 48 (20%; 95% CI = 15-25%), and "being free from physical distress" in 103 (42%; 95% CI = 36-48%) young patients. Young patients were significantly less likely to feel "one's life was completed" (mean = 3.3 (standard deviation = 2.0) vs. 3.8 (1.9), respectively; effect size (ES) = 0.29; adjusted p value = 0.000) and "not being a burden to others" (3.1 (1.5) vs. 3.5 (1.6), respectively; ES = 0.24; adjusted p value = 0.010) than the middle-aged.Conclusions: Overall, young cancer patients did not achieve a good death. Future efforts are needed to improve the quality of palliative care for young patients, focusing on psychosocial/spiritual suffering. [ABSTRACT FROM AUTHOR]