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

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]

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]

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]

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]

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]

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]

Context: Bereaved family members are present from diagnosis to the end of life and can look back and evaluate the experience; in addition, the family itself is also an important subject in the care of the patient. Therefore, although it is essential to determine the priority research issues from the viewpoint of the patients and health care workers, it is also crucial to know the important research themes from the viewpoint of the bereaved family members.Objectives: The purpose of this study was to identify research priorities for palliative care in Japan, based on the viewpoint of bereaved family members.Methods/design: We conducted a cross-sectional, self-report questionnaire survey. Content analysis was performed on free-text answers for research priorities. This study was carried out as part of the third Japan HOspice and Palliative Care Evaluation (J-HOPE3) study.Results: We extracted 1658 codes from the transcripts and organized them into 120 subcategories on the basis of similarity. Subcategories were then organized into eight categories as follows: ; ; ; ; ; ; ; and .Conclusion: The findings of this study can be used as a research agenda for palliative care, which should take first priority in the future, and could be carried out using limited resources. [ABSTRACT FROM AUTHOR]

Context: Unfinished business often causes psychological issues after bereavement. Providing care for families of terminally ill patients with cancer to prevent unfinished business is important.Objectives: To clarify the prevalence and types of unfinished business in families of end-of-life patients with cancer admitted to palliative care units (PCUs), explore depression and grief associated with unfinished business, and explore the factors affecting unfinished business.Methods: We conducted a cross-sectional, anonymous, self-report questionnaire survey with 967 bereaved families of patients with cancer admitted to PCUs. The questionnaire assessed the presence or the absence of unfinished business, content of unfinished business, depression, grief, process of preparedness, condition of the family and patient, and the degree of involvement of health care professionals.Results: Questionnaires were sent to 967 families, and 73.0% responded. In total, 26.0% of families had some unfinished business, with improvement of the patient-family relationship being a common type of unfinished business. Families with unfinished business had significantly higher depression and grief scores after bereavement compared with those without. Factors that influenced the presence or the absence of unfinished business were preparedness for the patient's death (P = 0.001), discussion between the patient and family about the disease trajectory and way to spend daily life (P < 0.001), good patient-family relationship (P = 0.011), and family and health care professionals considering together the appropriate timing to accomplish the family's wishes (P = 0.021).Conclusion: Many families have unfinished business. Health care professionals should coordinate the appropriate timing for what the family wishes to do, with consideration of family dynamics, including the family's preparedness, communication pattern, and relationships. [ABSTRACT FROM AUTHOR]

Context: Few studies have explored the clinical significance of the family's presence or absence at the moment of a patient's death and meaningful communication (saying "goodbye") in terms of post-bereavement outcomes.Objectives: To explore the potential association between the family's depression/complicated grief and their presence at the moment of a patient's death and the patient's communication with the family.Methods: A nationwide questionnaire survey was conducted on 965 family members of cancer patients who had died at palliative care units.Results: More than 90% of family members wished to have been present at the moment of death (agree: 40%, n = 217; strongly agree: 51%, n = 280); 79% (n = 393) thereof were present. Families' presence at death was not significantly associated with the occurrence of depression and complicated grief, but the dying patient's ability to say "goodbye" to the family beforehand was (depression: adjusted odds rate, 0.42; 95% CI, 0.26-0.69 adjusted P = 0.001; complicated grief: adjusted odds rate, 0.53; 95% CI, 0.29-0.94 adjusted P = 0.009).Conclusion: Many families wished to be present at the moment of the patient's death; however, meaningful communication (saying "goodbye") between the patient and family members, and not their presence or absence itself, was associated with better outcomes on measures of depression or complicated grief. Health care professionals could consider promoting both mutual communication (relating to preparation for death) between family members and patients before imminent death, as well as the family's presence at the moment of death. [ABSTRACT FROM AUTHOR]

Context: Decision making regarding the place of end-of-life (EOL) care is an important issue for patients with terminal cancer and their families. It often requires surrogate decision making, which can be a burden on families.Objectives: To explore the burden on the family of patients dying from cancer related to the decisions they made about the place of EOL care and investigate the factors affecting this burden.Methods: This was a cross-sectional mail survey using a self-administered questionnaire. Participants were 700 bereaved family members of patients with cancer from 133 palliative care units in Japan. The questionnaire covered decisional burdens, depression, grief, and the decision-making process.Results: Participants experienced emotional pressure as the highest burden. Participants with a high decisional burden reported significantly higher scores for depression and grief (both P < 0.001). Multiple regression analyses revealed that higher burden was associated with selecting a place of EOL care that differed from that desired by participants (P < 0.001) and patients (P = 0.034), decision making without knowing the patient's wishes and values (P < 0.001) and without participants sharing their wishes and values with the patient's doctors and/or nurses (P = 0.022), and making the decision because of a due date for discharge from a former facility or hospital (P = 0.005).Conclusion: Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients' and family members' values that are relevant to the desired place of EOL care is important. [ABSTRACT FROM AUTHOR]

Continuous deep sedation until death (CDS) is a type of palliative sedation therapy, and it has recently become a focus of intense debate. Marked inconsistencies in intervention procedures (i.e., what is CDS?) and unstandardized descriptions of patient backgrounds lead to difficulty in comparing the results in the literature. The primary aim of this article was to propose a conceptual framework to perform empirical studies on CDS. We propose the definition of CDS using the intervention protocol. As there are two types of CDS proposed in world-wide literature, we recommend to prepare two types of intervention protocol for CDS: "continuous deep sedation as a result of proportional sedation" (gradual CDS) and "continuous deep sedation to rapidly induce unconsciousness" (rapid CDS). In addition, we recommend that researchers characterize study patients' general condition using a validated prognostic tool, Prognosis in Palliative Care Study predictor model-A. Using this conceptual framework, we can compare the outcomes following the same exposures among homogenous patients throughout the world. This article proposes a provisional definition of two types of CDS. Defining CDS using the intervention protocol and describing patient backgrounds using validated prognostic tools enable comparisons and interpretations of empirical research about CDS. More empirical studies are urgently needed. [ABSTRACT FROM AUTHOR]

Context: Predicting prognosis using noninvasive and objective tools may facilitate end-of-life decisions for terminal cancer patients, their families, and other health care professionals.Objectives: To investigate if the shock index (SI), along with decreased level of consciousness (DLOC), is a reliable tool for predicting short-term survival time in terminal cancer patients.Methods: A two-part retrospective cohort study was performed on 670 consecutive adult hospice patients. Part 1 of the study was performed to investigate the reliability of SI and DLOC on admission and to make a simple tool for predicting survival time. Part 2 of the study was to validate the tool's reproducibility and analyze the correlation between SI, DLOC, and survival time.Results: In Part 1, multivariate Cox proportional hazards analyses for all study patients revealed that SI ≥ 1.0 in patients with DLOC was a significant risk factor of death (hazard ratio 3.08; 95% CI 1.72-5.53; P = 0.000). Generalized additive models confirmed that DLOC patients with SI = 1.0 had 9.58 days of mean survival time (MST). Receiver operating characteristic curve analyses of SI in patients with DLOC revealed that a survival time of less than three days was most reliably predicted. In Part 2, an increase in SI statistically decreased survival time. The upper 95% CIs of the calculated mean survival time for DLOC patients with SI ≥ 1.0 were less than one week. Bootstrap analyses revealed that the 95% CIs of the predicted survival time were 4.54-6.18 days in DLOC patients with SI = 1.0.Conclusion: An SI ≥ 1.0 along with DLOC is a highly reliable tool for predicting short-term survival time in terminal cancer patients. [ABSTRACT FROM AUTHOR]

Context Although the psychometric properties of the Japanese version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative Care (EORTC QLQ-C15-PAL) have been examined previously, that study had several limitations, for example, small sample size. Objectives To examine the validity and reliability, including test-retest reliability, of the Japanese version of EORTC QLQ-C15-PAL for cancer patients with metastasis or recurrence. Methods A cross-sectional anonymous questionnaire was administered to cancer patients who were being treated on an oncology inpatient ward, in an oncology outpatient clinic, and in seven inpatient palliative units in Japan, from August 2007 to March 2008. Results Data from a total of 312 cancer patients were analyzed. The proportion of missing values was less than 4% for all items. The factor structure was reproduced identically with the original EORTC QLQ-C15-PAL, English version. The correlation of subscales showed a reasonable matrix. Cronbach's alpha coefficients were 0.76 to 0.86, and intraclass correlation coefficients, which indicate test-retest reliability, ranged from 0.52 to 0.77. All subscales, especially physical functioning, fatigue, and pain, were significantly correlated with self-reported Eastern Cooperative Oncology Group performance status. Conclusion The Japanese version of EORTC QLQ-C15-PAL has sufficient validity, acceptable reliability, and feasibility for patients with advanced cancer. [ABSTRACT FROM AUTHOR]

Context Many surveys have evaluated patient-related barriers to pain management. Objectives To explore associations between a preference for opioids and general attitudes toward drugs, the experience and information received as a bereaved family, and beliefs regarding a good death. Methods A cross-sectional survey, performed in 2010, of bereaved families of patients with cancer in palliative care units across Japan. Questionnaires were sent to 997 families. Results A total of 66% of families responded. Of these, 224 responses were excluded because the family declined to participate in the study ( n = 38), the patient was not receiving any opioid analgesics, and there were missing data ( n = 164), or data were missing for the primary end points ( n = 22). Thus, 432 responses were finally analyzed (43%). In total, 26%, 41%, and 31% of family members stated that they strongly want to receive, want to receive, or slightly want to receive opioids if needed in the future, respectively. Determinants associated with a preference for receiving opioid treatment were the following: a general appreciation of the drugs ( P = 0.005), witnessing an improvement in the patient's quality of life as a result of pain relief ( P = 0.003), information provided by medical professionals that the opioid could be discontinued if side effects developed ( P = 0.042), and the belief that a good death was one that was free from pain and physical distress ( P < 0.001). Conclusion More than 90% of bereaved families whose relatives were treated with opioid analgesics reported a preference to receive opioid analgesics for the treatment of cancer pain, if necessary, in the future. [ABSTRACT FROM AUTHOR]

Abstract: Context: Both maintaining hope and preparing for the patient''s death are important for families of terminally ill cancer patients. Objectives: The primary aim of this study was to clarify the level of the family''s achievement of maintaining hope and preparing for death and the professional''s behavior related to their evaluations. Methods: A cross-sectional, anonymous, nationwide survey was conducted involving 663 bereaved families of cancer patients who had been admitted to 100 palliative care units throughout Japan. Results: A total of 454 family members returned the questionnaire (effective response rate, 68%). Overall, 73% of families reported that they could both maintain hope and prepare for the patient''s death. The independent determinants of the family''s agreement in reference to the professional''s behavior are pacing the explanation with the family''s preparation; coordinating patient and family discussions about priorities while the patient was in better condition; willingness to discuss alternative medicine; maximizing efforts to maintain the patient''s physical strength (e.g., meals, rehabilitation); discussing specific, achievable goals; and not saying “I can no longer do anything for the patient.” Conclusion: About 20% of family members reported that they could neither “maintain hope nor prepare for death.” A recommended care strategy for medical professionals could include 1) discussing achievable goals and preparing for the future and pacing explanation with the family''s preparation, 2) willingness to discuss alternative medicine, 3) maximizing efforts to maintain the patient''s physical strength, and 4) avoid saying they could do nothing further for the patient. [Copyright &y& Elsevier]

Abstract: Context: Prognosis is difficult to discuss with patients who have advanced cancer and their families. Objectives: This study aimed to explore the experiences of families of patients with cancer in Japan in receiving prognostic disclosure, explore family perception of the way the prognosis was communicated, and investigate relevant factors of family-perceived need for improvement. Methods: A multicenter questionnaire survey was conducted with 666 bereaved family members of patients with cancer who were admitted to palliative care units in Japan. Results: In total, 86.3% of the families received prognostic disclosure. The overall evaluation revealed that 60.1% of the participants felt that the method of prognostic disclosure needed some, considerable, or much improvement. The parameter with the highest value explaining the necessity for improvement was the family perception that the amount of information provided by the physician was insufficient (beta=0.39, P <0.001). Furthermore, the family perception that they had lost hope and that health care providers failed to facilitate preparation for the patient’s death had significant direct effects on the necessity for improvement (beta=0.21, P <0.001; and beta=0.18, P <0.001, respectively). The feelings for the necessity for improvement also were affected significantly by seven communication strategies (i.e., not saying “I can do nothing for the patient any longer,” pacing explanation with the state of the patient’s and family’s preparation, saying “We will respect the patient’s wishes,” making an effort to understand the family’s distress, being knowledgeable about the most advanced treatments, assuring continuing responsibility as the physician for medical care, and respecting the family’s values). Conclusion: This model suggests that strategies for care providers to improve family perception about prognostic disclosure should include 1) providing as much prognostic information as families want; 2) supporting families’ hopes by keeping up with up-to-date treatments and by assuring the continuing responsibility for medical care; 3) facilitating the preparation for the patient’s death by providing information in consideration of the family’s preparations and values; 4) stressing what they can do instead of saying that nothing can be done for the patient; and 5) assuring the family that they will respect the patient’s wishes. [Copyright &y& Elsevier]

Abstract: Context: Anorexia is one of the most common symptoms in terminally ill cancer patients and causes considerable distress for both patients and their families. Objectives: The primary aims of the present study were to clarify the level of the family-perceived emotional distress and necessity for improvement in professional practice when a relative becomes unable to take nourishment orally and explore the determinants of these outcomes. The ultimate aim was to develop an effective care strategy for family members of terminally ill cancer patients who become unable to take nourishment orally. Methods: A cross-sectional anonymous nationwide survey was conducted involving 662 bereaved family members of cancer patients who had been admitted to 95 palliative care units throughout Japan. Results: A total of 452 bereaved family members returned the questionnaires (effective response rate, 68%). Overall, 80% of family members experienced the situation where a terminally ill relative became unable to take nourishment orally. The reported level of family-perceived emotional distress was very distressing (38%) and distressing (33%). Responses to the family-perceived necessity for improvement in professional practice they received were much improvement needed (4%), considerable improvement needed (10%), and some improvement needed (46%). The independent determinants of a high level of family perceived emotional distress were a sense of helplessness and guilt, and belief that dehydration causes profound distress for dying patients. Independent determinants of a high level of family-perceived necessity for improvement in professional practice were a sense of helplessness and guilt, experience that health care providers did not pay enough attention to family members'' concerns, and insufficient relief of the patient''s symptoms. Conclusion: A considerable number of family members experienced high levels of emotional distress when a terminally ill cancer patient became unable to take nourishment orally, and many perceived a necessity for improvement in professional practice they received. A recommended care strategy includes the following four major domains: 1) relieving the family members'' sense of helplessness and guilt, 2) providing up-to-date information about hydration and nutrition at the end of life, 3) understanding family members'' concerns and providing emotional support, and 4) relieving the patient''s symptoms. Further research is needed to evaluate the effects of this care strategy on family members'' outcomes, including clinical studies to obtain more accurate understanding of the symptomatic effects of hydration and nutrition in terminally ill cancer patients. [Copyright &y& Elsevier]

Abstract: Context: Terminally ill cancer patients often experience a self-perceived burden that affects their quality of life; however, no standard care strategy for coping with this form of suffering has ever been established. Objectives: The objectives of this present study were 1) to investigate the prevalence of self-perceived burden among terminally ill cancer patients based on a survey of family members, 2) to assess the level of family perceived usefulness of expert-recommended care strategies, and 3) to categorize the care strategies. Methods: The subjects were bereaved family members of patients who had died in certified palliative care units throughout Japan. The Good Death Inventory was used to evaluate patients'' self-perceived burden based on the proxy ratings of family members. The perceived usefulness of care was assessed using a 27-item questionnaire developed by a focus group of palliative experts and a systematic review. Results: A total of 429 responses (64%) received from a member of each of 666 bereaved families was analyzed. In their responses, 25% of the bereaved family members reported that the patient had experienced a mild self-perceived burden, whereas 25% reported that the patient had experienced a moderate to severe self-perceived burden. The family members recommended the following as particularly effective care strategies: “Eliminate pain and other symptoms that restrict patient activity (53%);” “Quickly dispose of urine and stools so that they are out of sight (52%);” and “Support patients'' efforts to care for themselves (45%).” A factor analysis showed that the expert-recommended care strategies could be categorized into seven different components. Conclusion: Many terminally ill cancer patients suffer from a self-perceived burden. Family members recommended a variety of care strategies to alleviate patient-perceived burden. Palliative care specialists should have adequate knowledge of promising care strategies for alleviating patient-perceived burden. [Copyright &y& Elsevier]

Measurement of the structure/process of care is the first step in improving end-of-life care. The primary aim of this study was to psychometrically validate an instrument for directly measuring the bereaved family''s perception of the necessity for improvement in structural/procedural aspects of palliative care. Different sets of questionnaires were sent to 800 and 425 families who lost family members at one of 70 certified palliative care units in Japan in the development and validation phases, respectively, and 281 families of the latter group in the follow-up phase. The participants were requested to fill out a newly-developed Care Evaluation Scale (CES), along with outcome measures (the perceived experience and satisfaction levels) and potential covariates (the degree of expectation, the Center for Epidemiologic Studies Depression Scale, and the Social Desirability Scale). We obtained 485, 310, and 202 responses in the development, validation, and follow-up phases (response rates: 64%, 75%, and 72%, respectively). The 28-item CES had an overall Cronbach''s coefficient alpha of 0.98; the intra-class correlation coefficient in the test–retest examination was 0.57. A confirmatory factor analysis revealed 10 subscales: physical care (by physicians, by nurses), psycho-existential care, help with decision-making (for patients, for family), environment, family burden, cost, availability, and coordination/consistency. The CES subscales were only moderately correlated with the perceived-experience and satisfaction levels of corresponding areas (r = 0.36–0.52 and 0.39–0.60, respectively). The CES score was not significantly associated with the degree of expectation, the changes of depression, or the Social Desirability Scale. The CES is a useful tool to measure the bereaved family''s perception of the necessity for improvement in structural/procedural aspects of palliative care. The advantages of the CES are: 1) it specifically evaluates the structure and process of care, 2) it directly identifies needed improvements, 3) it is not affected by the degree of expectation, depression, or social desirability, and 4) it has satisfactory psychometric properties. [Copyright &y& Elsevier]

A desire for death and requests to hasten death are major topics in recent medical literature. The aim of this study was to clarify the bereaved family-reported incidence and reasons for desiring death and requests to hasten death during the whole course of terminally ill cancer patients receiving specialized palliative care in Japan. A nationwide questionnaire survey of 500 primary caregivers yielded a total of 290 responses (effective response rate, 62%). Sixty-two (21%) families reported that the patients had expressed a desire to die, and 29 (10%) families reported that the patients had requested that death be hastened. The major reasons for desiring death and requests to hasten death were: burden on others, dependency, meaninglessness, unable to pursue pleasurable activities, general malaise, pain, dyspnea, concerns about future distress, and wish to control the time of death. No intolerable physical symptoms were reported in 32% and 28% of the patients who desired death and those who requested to hasten death, respectively. Concerns about future distress and wishes to control the time of death were significantly more likely to be listed as major reasons for desiring death in patients who requested that death be hastened than those who did not. A desire for death and requests to hasten death are not uncommon in terminally ill cancer patients receiving specialized inpatient palliative care in Japan. More intensive strategies for general malaise, pain, and dyspnea near the end of life, and for feelings of being a burden, meaninglessness, and concerns about future distress would alleviate the serious suffering of patients with a desire for death. However, some patients with a strong wish to control the time of death might not receive benefit from conventional palliative care. [Copyright &y& Elsevier]

Background: The characteristics of physician communication with patients at the end of life (EOL) in East Asia have not been well studied. We investigated physicians' communications with imminently dying patients with cancer and their families in palliative care units (PCUs) in Japan, South Korea, and Taiwan.Methods: This observational study included patients with cancer newly admitted and deceased during their first admission to 39 PCUs in three countries. We evaluated 1) the prevalence and timing of informing patients and families of patients' impending death and 2) the prevalence of communication to assure the families of the patient's comfort.Results: We analyzed 2138 patients (Japan: 1633, South Korea: 256, Taiwan: 249). Fewer Japanese (4.8%: 95% confidence interval [95% CI], 3.8%-5.9%) and South Korean (19.6%: 95% CI, 15.2%-25.0%) patients were informed of their impending death, whereas 66.4% (95% CI, 60.2%-72.1%) of Taiwanese were informed; among all three countries, ≥90% of families were informed. Although most patients in all three countries and the families in South Korea and Taiwan were informed of the impending death greater than or equal to four days before death, 62.1% (95% CI, 59.6%-64.6%) of Japanese families were informed less than or equal to three days prior. Most families in all three countries received assurance that the patient would remain comfortable (could hear until death, no distress with death rattle or respiration with mandibular movement).Conclusions: Physicians in Taiwan communicated about patient's impending death most frequently, and physicians in all three countries generally provided assurance to families that the patients would remain comfortable. Further studies should explore the reasons for these differences and the effects of such communications in East Asia. [ABSTRACT FROM AUTHOR]

Background: Constant evaluation is important for maintaining and improving the quality of end-of-life care. We therefore conduct the fourth Japan Hospice and Palliative Evaluation Study (J-HOPE4) as a continuous evaluation study. In this present paper, we describe the design of J-HOPE4. The main purposes of J-HOPE4 are as follows:1) to evaluate the processes, structures, and outcomes of palliative care acute hospitals, palliative care units, and home hospice services; 2) to examine bereaved family members' self-reported psychosocial conditions, such as grief and depression as bereavement outcomes;3) to provide data to ensure and improve the quality of care provided by participating institutions via feedback based on the results from each institution; and 4) provide clinical and academic information concerning the implications of various issues in palliative care by conducting additional studies. Methods: We will conduct a cross-sectional, anonymous, self-reported questionnaire survey. In total, 190 institutions will participate in this study, meaning that 12,000 bereaved family members will be sent a questionnaire. Discussion: This is one of the largest cross-sectional surveys involving hospice and palliative care, both in Japan and worldwide. Because this study will have a large sample size, the findings are expected to be generalizable to other settings. [ABSTRACT FROM AUTHOR]

Context: The importance of communication between the cancer bereaved and others has been emphasized, but little is known about the more problematic aspects of this communication such as "unhelpful communication."Objectives: The aim of this study was to establish which types of communication are perceived by the bereaved to be unhelpful.Methods: We conducted a cross-sectional, anonymous, nationwide survey at 103 certified hospice facilities/palliative care units in Japan.Results: A total of 630 (63%) bereaved responded. Over 60% of the bereaved experiencing such communication considered it to be unhelpful, with the most unhelpful communication being "They emphasized the positive aspects of death." Thirteen items related to communication were separated into two factors ("advice for recovery" and "comments on cancer") by factor analysis. "Comments on cancer" were more unhelpful to them and were more often provided by those around them. With regard to "advice for recovery," losing a spouse was a stronger predictor with a higher odds ratio for communication distress than losing a parent (odds ratio, 5.34; 95% CI, 1.63-17.57).Conclusion: A number of the bereaved have experienced unhelpful communication regarding advice on dealing with bereavement and cancer. To prevent putting an unnecessary burden on the bereaved with such unhelpful communication, it is essential to understand problematic aspects. Even when people have no intention of hurting the bereaved, some communication may do so. Communication with the bereaved is also a core clinical skill required by health professionals, and further efforts are required to support the grieving process. [ABSTRACT FROM AUTHOR]

Context: Talking about death is an important issue for terminally-ill cancer patients and their families. Little is known about how often and which bereaved families regret not having talked about death with their deceased loved one.Objectives: To explore the prevalence of a regret of not having talked about death with a deceased loved one among bereaved family members of adult cancer patients, and to systematically explore factors contributing to their regret.Methods: We conducted a nationwide survey of 999 bereaved families of cancer patients admitted to 133 inpatient hospices in Japan and surveyed families' regret on talking about death. Exploratory analyses identified the underlying structures of process, option, and outcome subscales of factors contributing to regret.Results: Among 678 bereaved families (response rate 68%), 224 (33%) regretted not having talked about death sufficiently, whereas 40 (5.9%) conversely regretted having talked about death. Three process factors ("prognostic disclosure to patient" [β = 0.082, P = 0.039], "upsetting of patient and family" [β = 0.127, P = 0.001], and "family's sense of uncertainty about when to act based on terminal awareness" [β = 0.141, P = 0.000]) and an outcome factor ("having achieved a good death" [β = -0.152, P = 0.000]) contributed to the regret of talking insufficiently.Conclusion: A third of bereaved families of adult cancer patients regretted not having talked about death sufficiently. Clinicians may minimize this regret by facilitating a shared understanding of the disease and prognosis, advising families explicitly when to talk based on terminal awareness, providing continuous emotional support, and validating their decision on talking about death. [ABSTRACT FROM AUTHOR]

Context: End-of-life discussions are crucial for providing appropriate care to patients with advanced cancer at the end of their lives.Objectives: The objective of this study was to explore associations between end-of-life discussions and bereaved families' depression and complicated grief and the quality of patient death and end-of-life care.Methods: A nationwide questionnaire survey of bereaved family members was conducted between May and July 2014. A total of 13,711 bereaved family members of cancer patients who were cared for by specialist palliative care services at 75 institutions throughout Japan and died before January 2014 participated. We evaluated the prevalence of depression (defined as the Patient Health Questionnaire-9 ≥ 10) and complicated grief (defined as the Brief Grief Questionnaire ≥ 8) in bereaved family members. Moreover, we evaluated the quality of death and end-of-life care with the Good Death Inventory and the Care Evaluation Scale, respectively.Results: A total of 9123 questionnaires were returned (response rate 67%), and 80.6% of the respondents reported that they had end-of-life discussions. After propensity score-weighted adjustment, the results showed that bereaved family members who had end-of-life discussions had a lower frequently of depression (17.3% vs. 21.6%; P < 0.001) and complicated grief (13.7% vs. 15.9%; P = 0.03). End-of-life discussions were associated with better quality of death (the Good Death Inventory score, 47.2 ± 8.5 vs. 46.1 ± 9.4; P < 0.001) and end-of-life care (the Care Evaluation Scale score, 84.1 ± 11.4 vs. 78.9 ± 14.3; P < 0.001).Conclusion: End-of-life discussions may contribute to reducing depression and complicated grief in bereaved family members and enable patients to experience quality end-of-life care and a good death. [ABSTRACT FROM AUTHOR]

Objectives Primary aim was to clarify the prevalence and factors associated with the occurrence of deathbed visions, explore associations among deathbed visions, a good death, and family depression. Additional aim was to explore the emotional reaction, perception, and preferred clinical practice regarding deathbed visions from the view of bereaved family members. Methods A nationwide questionnaire survey was conducted involving 3964 family members of cancer patients who died at hospitals, palliative care units, and home. Results A total of 2827 responses (71%) were obtained, and finally 2221 responses were analyzed. Deathbed visions were reported in 21% (95% CIs, 19–23; n = 463). Deathbed visions were significantly more likely to be observed in older patients, female patients, female family members, family members other than spouses, more religious families, and families who believed that the soul survives the body after death. Good death scores for the patients were not significantly different between the families who reported that the patients had experienced deathbed visions and those who did not, whereas depression was more frequently observed in the former than latter, with marginal significance (20 vs. 16%, respectively, adjusted P = 0.068). Although 35% of the respondents agreed that deathbed visions were hallucinations, 38% agreed that such visions were a natural and transpersonal phenomenon in the dying process; 81% regarded it as necessary or very necessary for clinicians to share the phenomenon neutrally, not automatically labeling them as medically abnormal. Conclusions Deathbed vision is not an uncommon phenomenon. Clinicians should not automatically regard such visions as an abnormal phenomenon to be medically treated and rather provide an individualized approach. [ABSTRACT FROM AUTHOR]

Context Clarification of the potential differences in end-of-life care among East Asian countries is necessary to provide palliative care that is individualized for each patient. Objectives The aim was to explore the differences in attitude toward patient autonomy and a good death among East Asian palliative care physicians. Methods A cross-sectional survey was performed involving palliative care physicians in Japan, Taiwan, and Korea. Physicians' attitudes toward patient autonomy and physician-perceived good death were assessed. Results A total of 505, 207, and 211 responses were obtained from Japanese, Taiwanese, and Korean physicians, respectively. Japanese (82%) and Taiwanese (93%) physicians were significantly more likely to agree that the patient should be informed first of a serious medical condition than Korean physicians (74%). Moreover, 41% and 49% of Korean and Taiwanese physicians agreed that the family should be told first, respectively; whereas 7.4% of Japanese physicians agreed. Physicians' attitudes with respect to patient autonomy were significantly correlated with the country (Japan), male sex, physician specialties of surgery and oncology, longer clinical experience, and physicians having no religion but a specific philosophy. In all 12 components of a good death, there were significant differences by country. Japanese physicians regarded physical comfort and autonomy as significantly more important and regarded preparation, religion, not being a burden to others, receiving maximum treatment, and dying at home as less important. Taiwanese physicians regarded life completion and being free from tubes and machines as significantly more important. Korean physicians regarded being cognitively intact as significantly more important. Conclusion There are considerable intercountry differences in physicians' attitudes toward autonomy and physician-perceived good death. East Asia is not culturally the same; thus, palliative care should be provided in a culturally acceptable manner for each country. [ABSTRACT FROM AUTHOR]

Context: Clarification of the potential differences in end-of-life care among East Asian countries is necessary to provide palliative care that is individualized for each patient.Objectives: The aim was to explore the differences in attitude toward patient autonomy and a good death among East Asian palliative care physicians.Methods: A cross-sectional survey was performed involving palliative care physicians in Japan, Taiwan, and Korea. Physicians' attitudes toward patient autonomy and physician-perceived good death were assessed.Results: A total of 505, 207, and 211 responses were obtained from Japanese, Taiwanese, and Korean physicians, respectively. Japanese (82%) and Taiwanese (93%) physicians were significantly more likely to agree that the patient should be informed first of a serious medical condition than Korean physicians (74%). Moreover, 41% and 49% of Korean and Taiwanese physicians agreed that the family should be told first, respectively; whereas 7.4% of Japanese physicians agreed. Physicians' attitudes with respect to patient autonomy were significantly correlated with the country (Japan), male sex, physician specialties of surgery and oncology, longer clinical experience, and physicians having no religion but a specific philosophy. In all 12 components of a good death, there were significant differences by country. Japanese physicians regarded physical comfort and autonomy as significantly more important and regarded preparation, religion, not being a burden to others, receiving maximum treatment, and dying at home as less important. Taiwanese physicians regarded life completion and being free from tubes and machines as significantly more important. Korean physicians regarded being cognitively intact as significantly more important.Conclusion: There are considerable intercountry differences in physicians' attitudes toward autonomy and physician-perceived good death. East Asia is not culturally the same; thus, palliative care should be provided in a culturally acceptable manner for each country. [ABSTRACT FROM AUTHOR]

Context End-of-life (EOL) cancer care in general hospitals and home care has not previously been evaluated in Japan. Objectives This study aimed to evaluate EOL cancer care from the perspective of bereaved family members in nationwide designated cancer centers, inpatient palliative care units (PCUs), and home hospices in Japan. Methods We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members of cancer patients in March 2008 for 56 designated cancer centers and in June 2007 for 100 PCUs and 14 home hospices. Outcomes were overall care satisfaction, structure and process of care (Care Evaluation Scale), and achievement of a good death (Good Death Inventory). Results In designated cancer centers, PCUs, and home hospices, 2794 (response rate 59%), 5312 (response rate 69%), and 292 (response rate 67%) bereaved family members participated, respectively. Mean scores for overall care satisfaction were high for all places of death, at 4.3 ± 1.2 for designated cancer centers, 5.0 ± 1.2 for PCUs, and 5.0 ± 1.0 for home hospices. Designated cancer centers showed significantly lower ratings than PCUs and home hospices for structure and process of care and achievement of a good death ( P = 0.0001 each). Home hospices were rated significantly higher than PCUs for achievement of a good death ( P = 0.0001). Conclusion The main findings of this study were: 1) overall, bereaved family members were satisfied with end-of-life care in all three places of death; 2) designated cancer centers were inferior to PCUs and home hospices and had more room for improvement; and 3) home hospices were rated higher than PCUs for achieving a good death, although home hospices remain uncommon in Japan. [ABSTRACT FROM AUTHOR]