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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]

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

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: 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]

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]

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]

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]