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Background: This study aimed to clarify the situation and evaluate the communication on anticancer treatment discontinuation from the viewpoint of a bereaved family, in reference to the concept of nudges., Methods: A multi-center questionnaire survey was conducted involving 350 bereaved families of patients with cancer admitted to palliative care units in Japan., Results: The following explanations were rated as essential or very useful: (i) treatment would be a physical burden to the patient (42.9%), (ii) providing anticancer treatment was impossible (40.5%), (iii) specific disadvantages of receiving treatment (40.5%), (iv) not receiving treatment would be better for the patient (39.9%) and (v) specific advantages of not receiving treatment (39.6%). The factors associated with a high need for improvement of the physician's explanation included lack of explanation on specific advantages of not receiving treatment (β = 0.228, P = 0.001), and lack of explanation of 'If the patient's condition improves, you may consider receiving the treatment again at that time.' (β = 0.189, P = 0.008)., Conclusions: Explaining the disadvantages of receiving treatment and the advantages of not receiving treatment, and presenting treatment discontinuation as the default option were effective in helping patients' families in making the decision to discontinue treatment. In particular, explanation regarding specific advantages of not receiving treatment was considered useful, as they caused a lower need for improvement of the physicians' explanation., (© The Author(s) 2024. Published by Oxford University Press.)

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.

Background: Terminally ill patients with cancer and their families may have a sense of abandonment when they are referred to hospice. This study aimed to clarify the prevalence of families' sense of abandonment, explore the association between the sense of abandonment and the oncologists' behaviors, and investigate the association between the sense of abandonment and the families' depression and complicated grief., Patients and Methods: This was part of a nationwide self-reported questionnaire survey of bereaved families of patients with cancer who died in inpatient hospices. We sent questionnaires to 947 bereaved families of patients with cancer who died in 133 certified hospices between May 2012 and January 2014., Results: Among 707 responses obtained, a total of 189 (26.7%) families felt abandoned. The factors significantly associated with a greater sense of abandonment were that the oncologists said there was nothing more to do for the patient, the patient's age of less than 60 years, and being the patient's spouse. The factors significantly associated with a lower sense of abandonment were that the oncologists reassured the patients that they had received the best anticancer treatment, that the oncologists recommended hospices as one potential choice rather than mandatory, and that a palliative care team provided care. Families with a sense of abandonment had higher scores on the Patient Health Questionnaire-9 ( p  = .096) and Brief Grief Questionnaire ( p  < .001)., Conclusion: Approximately a quarter of bereaved families had a sense of abandonment, which was associated with a higher rate of complicated grief. Oncologists may reduce the sense of abandonment by reassuring that the patients received the best anticancer treatment, recommending hospices as a potential choice rather than as mandatory, and by not saying there is nothing that can be done for the patients., Implications for Practice: This self-reported questionnaire study investigated the prevalence of families' feelings of abandonment when they were referred to hospice care, focusing on the association of sense of abandonment and the behavior of their physicians. Nearly a quarter of families felt abandoned by the referral to hospice, and the behavior of some oncologists was associated with the sense of abandonment., Competing Interests: Disclosures of potential conflicts of interest may be found at the end of this article., (© AlphaMed Press 2018.)

Background: Few data are available on bereaved family members' perspective on the frequency of symptoms and degree of distress among terminal patients with cancer., Methods: We sent a questionnaire to 1472 bereaved family members of terminal patients with cancer in 20 general hospitals. The questionnaire asked them (1) to indicate which symptoms the patients had, (2) to rate on a 4-point scale the extent to which the symptom was distressing, as follows: 1 = not distressing, 2 = slightly distressing, 3 = quite distressing, and 4 = very distressing at the point of 2 weeks before the patient had died., Results: We analyzed 805 questionnaires for this study. Anorexia was the commonest symptom among terminal patients with cancer experienced by bereaved family members, followed by somnolence, weight loss, fatigue, and pain. Anorexia was the most distressing symptom among terminal patients with cancer experienced by bereaved family members, followed by weight loss, pain, edema, and dyspnea., Conclusions: Anorexia and weight loss were frequent symptoms and bereaved family members felt very distressing. Furthermore, there are not means of effective treatment now. Thus, we think that further study in this field is necessary.

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., (Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.)

Objective: Complicated grief (CG) is considered a distinctive symptom from other bereavement-related mental impairments such as major depressive disorder (MDD). CG and MDD may appear independently or co-morbidly; however, the factors associated with each situation are unclear., Methods: We conducted a nationwide cross-sectional questionnaire survey involving bereaved family members of cancer patients in 175 institutions. The following items were included in the questionnaires to assess the prevalence of CG and MDD, and the following associated factors: demographic characteristics; bereaved family depression (Patient Health Questionnaire-9) and grief status (Brief Grief Questionnaire); structure and process of care (Care Evaluation Scale); overall care satisfaction; and achievement of a good death (Good Death Inventory)., Results: A total of 9123 questionnaires were returned. The prevalence of CG and MDD was 14% and 17%, respectively. Additionally, 58% of the possible CG participants showed co-morbid symptoms. Common factors that showed significant association with either independent or co-morbid symptoms of CG and MDD were pre-existing mental impairment; belief in the survival of the soul after physical death; unpreparedness for the death; poor physical or psychological health status; and the belief that the deceased felt themselves as a burden to others (all P < 0.05). The duration of bereavement did not remain significant after multivariate analysis., Conclusions: While there were many common factors associated with both CG and MDD independently, few participants exhibited associations to both CG and MDD. Therefore, CG and MDD can be considered as distinctive symptoms, which frequently appear co-morbidly., (Copyright © 2017 John Wiley & Sons, Ltd.)

Background: Actions in preparation for death and talks about death between advanced cancer patients and their families are considered essential to achieve a good death. However, little is known about the prevalence of such actions compared with talks and their association with bereaved families' psychological morbidity., Objective: To clarify the prevalence of bereaved families having acted in preparation for death and talked about death with their loved one, and to explore their associations with bereaved families' depression and complicated grief (CG)., Design: A nationwide survey. Setting/Subject: A total of 999 bereaved families of cancer patients admitted to 133 inpatient hospices in Japan., Measurements: The prevalence of families' actions in preparation for and talks about death, Patient Health Questionnaire (PHQ)-9, and Brief Grief Questionnaire (BGQ)., Results: Among 678 bereaved families (response rate = 68%), 513 (76%) acted in preparation for death, and 315 (46%) talked about death with their loved one. Those who acted and talked were significantly less likely to suffer depression (PHQ-9 ≥ 10) than those who neither acted nor talked (odds ratio [OR], 0.405; 95% confidence interval [CI], 0.195-0.845; adjusted p = 0.016). Families who acted were significantly less likely to suffer complicated grief (CG; BGQ ≥8), whether they talked (OR, 0.394; 95% CI, 0.185-0.84; adjusted p = 0.016) or not (OR, 0.421; 95% CI, 0.191-0.925; adjusted p = 0.031)., Conclusions: Most families acted in preparation for death, and those who acted were less likely to suffer depression and CG. Clinicians may minimize families' later psychological morbidity by helping patients and families act in preparation for death.

This study clarified the evaluation of the information about palliative care units (PCUs) from the oncologists by the bereaved family members of Japanese patients with cancer at the time of their first referral. A multicenter questionnaire survey examining the amount, timing, and adequacy of information received about PCUs was conducted. Half of the respondents (N = 465, mean age = 60 years) were spouses. Findings showed that 55% of the respondents thought the amount of information was inadequate and 33% thought the timing of the information about PCU from the oncologist was inadequate. Greater perceived inadequacy of the amount of information was significantly associated with (1) obtaining information from other patients and/or family member who had no experience with PCUs and (2) not acquiring information about the availability of medical staff and medical treatments at PCUs. Greater perceived inadequacy of the timing of the information was significantly associated with acts by the oncologist and/or nurses, such as providing insufficient information or saying there is nothing more that can be done any longer; however, this was not significantly associated with the actual timing of the oncologists' information. Medical staff should understand what information families desire and provide enough detail for patients to imagine accurately what time spent in a PCU would be like. Moreover, practitioners should strive to improve methods of communication and engagement after the information provision, rather than prioritizing the timing of the information.

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., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: To clarify the verbal communication of feelings between families and patients in Japanese palliative care units from the perspective of bereaved family members by examining (1) proportions of families' and patients' verbalization of six feelings (gratitude, love, seeking forgiveness, giving forgiveness, wishes after death, and continuing bonds), (2) recognition of receiving these feelings through verbalization from the family's perspective, and (3) the specific attitudes of family members that influence their verbalizations., Methods: In 2010, a cross-sectional survey was conducted with 968 bereaved families of cancer patients in palliative care units across Japan., Results: Five hundred thirty-seven responses were analyzed. (1) "Gratitude" was verbalized most often (families: 47%; patients: 61%), and "expressing forgiveness" least often (families: 16%; patients: 11%). (2) Even if the words were not used, 81.2% to 88.2% of families answered that they had received the patient's feelings, and 71.8% to 85.4% of families felt the patient had received their feelings. (3) Multiple logistic regression analyses indicated that the strongest attitudes determining verbalizing were "not wanting to say farewell without conveying feelings," "a daily basis of expressing," and "heart-to-heart communication" (ishin-denshin)., Conclusions: For both families and patients, verbalizing feelings was difficult. Our results showed that families' and patients' verbalizing and receiving of feelings must be aligned to understand their communication at the end of life in Japan. Future research is needed to verify how attitude helps promote or inhibit verbalization., (Copyright © 2017 John Wiley & Sons, Ltd.)

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., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

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., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

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., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

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., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: The aims of this study are to clarify the state of information regarding opioids for families and what kinds of experiences they had with opioids while the patient was followed as an outpatient and inpatient., Participants: This study was part of a cross-sectional nationwide survey of bereaved families of patients with cancer, namely, the Japan Hospice and Palliative Care Evaluation 2 study. The participants in this study comprised 572 bereaved families who had experienced the death of a family member during the period from January 2008 to December 2009 at 1 of 103 certificated palliative care units., Main Outcome Measures: In response to the question of "how much improvement was needed for information regarding opioids," 41% answered "improvement is not necessary at all," 43% answered "improvement is slightly necessary," 14% answered "improvement is necessary," and 2% answered "improvement is extremely necessary." Regarding anxiety about the use of opioid, it was found that 14% of respondents indicated "opioids are very safe," 65% of respondents indicated "opioids are relatively safe," 19% of respondents indicated "opioids are not so safe," and 2% of respondents indicated "opioids are not so safe at all." from the information obtained for opioids. It was found that 90% of families agreed with the item, "I would like to be clearly explained that drugs for medical purposes are safe and that the patient will not develop a drug addiction and their life expectancy will not be reduced.", Conclusion: From this study, it is important for families of patients with cancer to be explained profound and careful information of opioid.

Background: A number of advanced cancer patients are suffering from physical and psychosocial burdens because of cancer cachexia, and these burdens also greatly impact on their family members and relationships between patients and family members. It is necessary to consider the psychosocial impact of cancer cachexia on family members of advanced cancer patients., Methods: A cross-sectional anonymous nationwide survey was conducted involving 925 bereaved family members of cancer patients who had been admitted to 133 inpatient hospices throughout Japan., Results: A total of 702 bereaved family members returned the questionnaires (response rate, 75.9%). Concerning eating-related distress, 'I served what the patient wanted without consideration of calories and nutritional composition' was highest (75.1%), and 'I tried making many kinds of meals for the patient' and 'I was concerned about planning meals for the patient every day' followed (63.0% and 59.4%, respectively). The top 5 of the 19 items were categorized as 'fighting back'. Need for nutritional support was high (72.2%), and need for explanations about the reasons for anorexia and weight loss of patients was moderate (41.4%). Explanatory factor analysis of eating-related distress identified the following four domains: (factor 1) feeling that family members forced the patient to eat to avoid death, (factor 2) feeling that family members made great efforts to help the patient eat, (factor 3) feeling that eating was a cause of conflicts between the patient and family members, and (factor 4) feeling that correct information was insufficient. Results of multiple logistic regression analysis showed that spouse, fair/poor mental status, factors 1, and 4 were identified as independent determinants of major depression {odds ratio [OR] 3.27 [95% confidence interval (CI) 1.24-8.60], P  = 0.02; OR 4.50 [95% CI 2.46-8.25], P  < 0.001; OR 2.51 [95% CI 1.16-5.45], P  = 0.02; OR 2.33 [95% CI 1.13-4.80], P  = 0.02, respectively}., Conclusions: A number of family members of advanced cancer patients experienced high levels of eating-related distress and had a need for nutritional support.

This study aimed to clarify perspectives of bereaved family members regarding opioids and compare perceptions before admission and after bereavement. A cross-sectional questionnaire survey for bereaved family members in 100 inpatient palliative care units was administered. Participants were 297 bereaved family members of patients who used opioids. Many bereaved family members had misconceptions of opioids before admission. There was improvement after bereavement, but understanding remained low. Respondents less than 65 years old showed significantly greater decreases in misconceptions regarding opioids compared to older generations, after bereavement. Bereaved family members who were misinformed about opioids by physicians were significantly more likely to have misconceptions about opioids. Educational interventions for physicians are needed to ensure that they offer correct information to the general population., (© The Author(s) 2015.)

The study purpose was to understand the perspectives of bereaved family members regarding palliative care unit (PCU) and palliative care and to compare perceptions of PCU before admission and after bereavement. A cross-sectional questionnaire survey was conducted, and the perceptions of 454 and 424 bereaved family members were obtained regarding PCU and palliative care, respectively. Family members were significantly more likely to have positive perceptions after bereavement (ranging from 73% to 80%) compared to before admission (ranging from 62% to 71%). Bereaved family members who were satisfied with medical care in the PCU had a positive perception of the PCU and palliative care after bereavement. Respondents younger than 65 years of age were significantly more likely to have negative perceptions of PCU and palliative care., (© The Author(s) 2015.)

Background: Psychological distress is problematic for patients and their family caregivers in the oncological setting. The level of stress is influenced by the health status of the patient and their family members as well as the support system for home care. However, it remains unclear how best to support distressed caregivers providing end-of-life care at home., Methods: The present study was performed as part of the Japan Hospice and Palliative Care Evaluation study among caregivers whose family members are provided home palliative care. The caregivers were asked whether they wished to receive psychological support from mental health specialists, and factors associated with the need for psychological support were analyzed., Results: Of the 1052 caregivers, 628 completed the questionnaire. As a whole, 169 subjects [27%; 23-30% (95% confidence interval)] reported needing psychological support from a mental health specialist. According to a multiple regression analysis, factors associated with the need for psychological support included (1) emotional distress due to the need to adapt to rapid worsening of the patient's condition [adjusted odds ratio: 2.62 (95% CI 1.77-3.88), p < 0.001], (2) the poor health conditions of the caregivers [2.93 (1.61-5.36), p < 0.001], and (3) having someone else available to care for the patient in place of the caregiver [0.51 (0.34-0.78), p = 0.002]., Conclusions: Psychological support is required for caregivers tending to patients at home. Further studies are needed to construct a system to provide continuous support to caregivers. Copyright © 2015 John Wiley & Sons, Ltd., (Copyright © 2015 John Wiley & Sons, Ltd.)

Introduction: Communicating with patients is clearly an integral part of physicians' practice, and introducing home hospice care is sometimes a difficult task for oncologists. The primary aims of this study were to clarify family-reported degree of emotional distress and the necessity for improvement in communication when introducing home hospice care, and to identify factors contributing to distress levels., Methods: A multicenter questionnaire survey was conducted involving 1,052 family members of cancer patients who died at home at 15 home-based hospice services throughout Japan., Results: A total of 616 responses were analyzed(effective response rate of 60%). Fifty-nine percent of the bereaved family members reported that they were distressed or very distressed in receiving information about home hospice care, and 30% reported considerable or much improvement was necessary. There were 6 determinants of family-reported degree of emotional distress and the necessity for improvement: 1 ) Family distress was experienced when the physician stated that the disease progression defeated medicine and nothing could be done for the patient. 2 ) The physicians' explanation did not match with the state of family preparation. 3 ) There was no intimacy between hospital physician and home physician. 4 ) Physicians did not make the atmosphere relaxing enough to allow families to ask questions. 5 ) Nurses did not follow up to generate additional ideas to supplement the physician's statement. 6 ) Family members experienced pressure to make a rash decision., Conclusion: In receiving information about transition of home care, a considerable number of families experienced high levels of emotional distress and felt a need for improvement in the communication style. This study proposes 6 strategies to alleviate family distress.

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., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: There is no standardized method by which bereavement care is offered by hospice/palliative care units (PCUs) in Japan., Aim: To evaluate bereavement services provided by hospice/PCUs and clarify demands for bereavement care., Design: Qualitative design based on semistructured interviews and content analysis., Setting/participants: Forty-four bereaved family members of patients with cancer who died in 9 PCUs in 4 regions., Results: Memorial services were positively evaluated for the following variables: reunion and interaction with staff; the service's relaxed atmosphere; staff attentiveness; suitable location; suitable timing; program content; and interaction with other bereaved families. Memorial cards were positively evaluated regarding the level of concern shown by the staff and the personalized card. Respondents indicated their desire for a care system, a bereaved family care program, and information services., (© The Author(s) 2013.)

Context: Bereaved family members witnessing a patient's death rattle often experience distress. However, the benefits of specific care measures aimed at decreasing death rattle-associated family distress have not yet been evaluated., Objectives: To clarify death rattle-related emotional distress levels among family members and their perceptions of the need for death rattle care improvement and explore the factors influencing both these issues., Methods: A cross-sectional questionnaire survey of bereaved family members of cancer patients was conducted in 95 palliative care units in June 2007., Results: Six hundred sixty-three questionnaires were mailed out, and 390 (61%) responses were analyzed. Among these, 181 (46%) respondents experienced death rattle. Of these, 66% reported high distress levels and 53% perceived a strong need for improved death rattle care. Factors influencing high distress levels were the gender (female) of family members, unawareness about death rattle being a natural phenomenon, and their fear and distressing interpretations of death rattle. Factors influencing perceptions of a strong need for improved care were the gender (male) of family members, severity of death rattle, death rattle-associated discomfort to patients, family members' experiences of inadequate nursing care (e.g., repositioning) and insufficient consultation about suctioning, and their perception of uncomfortable smells., Conclusion: To decrease family-perceived distress, medical staff should alleviate patient symptoms and suffering with a comprehensive care strategy, try to decrease uncomfortable smells, and communicate with family members to address distressing interpretations and fears., (Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

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 © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: The primary goals of this analysis were to explore the pros and cons of prognostic disclosure to patients and their families from the bereaved family's point of view., Methods: Semistructured interviews were conducted with 60 bereaved family members of patients with cancer in Japan., Results: There were eight categories of influence related to the disclosure of prognosis to the family, including pros (e.g., "Enabling mental preparedness for the patient's death") and cons (e.g., "Being distressed by acknowledging the patient's prognosis"); and seven categories of influence of not disclosing the prognosis to family, including pros (e.g., "Being able to maintain hope") and cons (e.g., "Being prevented from providing adequate care for the patient"). There were also nine categories of influence related to the disclosure of prognosis to patients (e.g., "Enabling various discussions regarding death with the patient"), and eight categories of influence related to not disclosing the prognosis to patients (e.g., "Maintaining the patient's hope")., Conclusions: Although prognostic disclosure to family members can contribute to psychological distress and hopelessness, at the same time, it has the potential to prepare them for the future both emotionally and practically, and also to make the time until the patient's death as meaningful as possible. It is useful for physicians to introduce pros and cons of prognostic disclosure to family members at the time of decision making, to understand the family members' psychological state, and to provide support considering pros and cons whether or not they disclosed prognosis.

Objective: The aim of the study was to evaluate whether family members believed that the decision for home hospice had been the acceptable choice and to identify factors related to families accepting that the decision was good., Methods: In June 2007, a cross-sectional anonymous questionnaire was distributed to bereaved family members of terminal cancer patients in Japan who died at home in the previous 6 months. The questionnaire included questions about whether the family member believed that the decision for home hospice had been the acceptable choice and the decision-making process., Results: A total of 286 responses from 14 home hospices were analyzed. A total of 92% of the participants indicated that the decision for home hospice had been the acceptable choice. Multivariate logistic regression analysis indicated that the following subjects were more likely to believe that the decision for home hospice had been the acceptable choice: those who (i) considered the patient's desire ahead of the family situation (P < 0.001); (ii) decided based on knowledge of all options (P < 0.001); (iii) decided based on agreement with patient, family and medical staff (P = 0.007); (iv) decided based on the patient and family only (P = 0.026); and (v) had patients who were enrolled in home hospice for <60 days (P = 0.032)., Conclusions: It is important to encourage discussion about end-of-life care and to assist the patient and family in the decision-making process by providing information on all available options through open communication.

Purpose: Our goal was to better facilitate the desire of terminally ill patients to die in a favorite place, which may not always be the case for patients admitted to palliative care units. Our aims were to assess the perspectives of bereaved family members about (1) available and preferred places of care when their ill loved one was admitted to a palliative care unit and (2) why patients preferred to live at home but could not., Methods: A questionnaire was answered by 407 of 663 bereaved family members of cancer patients who were admitted to 95 inpatient palliative care units in Japan., Results: Seventy-three percent of respondents answered that a palliative care unit was the only available option. Patients lacking other places for care preferred their home (49%), a hospital (26%), or a long-term care facility (28%). Only 9% retrospectively considered that living at home was feasible for the following reasons: anxiety about the patient's deteriorating physical condition (85%), insufficient care at home compared to a hospital (84%), imminent hospitalization (63%), and the patient's concern about being burdensome (60%)., Conclusion: Seventy-three percent of terminally ill cancer patients admitted to palliative care units had no other options for care. Improving outpatient treatment at palliative care units and establishing a palliative care system in patients' homes would greatly benefit patients and their families.

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 © 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

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 (c) 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

PURPOSE The aim of this study was to clarify the level of emotional distress experienced by bereaved family members and the perceived necessity for improvement in the care for imminently dying patients and to explore possible causes of distress and alleviating measures. METHODS A cross-sectional nationwide survey was performed in 2007 of bereaved families of cancer patients at 95 palliative care units across Japan. Results Questionnaires were sent to 670 families, and 76% responded. Families reported their experiences as very distressing in 45% of cases. Regarding care, 1.2% of respondents believed that a lot of improvement was needed, compared with 58% who believed no improvement was needed. Determinants of high-level distress were a younger patient age, being a spouse, and overhearing conversations between the medical staff outside the room at the time of the patient's death; those reporting high-level necessity of improvement were less likely to have encountered attempts to ensure the patient's comfort, received less family coaching on how to care for the patient, and felt that insufficient time was allowed for the family to grieve after the patient's death. CONCLUSION A considerable number of families experienced severe emotional distress when their family member died. Thus, we propose that a desirable care concept for imminently dying cancer patients should include relief of patient suffering, family advisement on how to care for the patient, allowance of enough time for the family to grieve, and ensuring that family members cannot overhear medical staff conversations at the time of the patient's death.

Background: In order to improve the quality of palliative care, we can learn from bereaved families who were dissatisfied with the care they received. The primary aim of this study was to explore why bereaved families were dissatisfied with specialized inpatient palliative care., Methods: This qualitative study formed part of a nationwide questionnaire survey administered to 1225 bereaved family members of cancer patients who died in certified palliative care units in Japan. The participants were 22 consecutive family members who reported a greater need for improvement in care. Data were analysed by the content analysis., Results: The reasons that the bereaved families listed are classified into 27 categories and seven themes: (1) lack of perceived support for maintaining hope; (2) lack of perceived respect of individuality, especially in attitudes toward death; (3) perceived poor quality of care, especially psychological care, not being treated with dignity and inadequate explanation from physicians; (4) inadequate staffing and equipment, especially physician availability; (5) unavailability of timely administration; (6) lack of accurate information about palliative care units; and (7) family's practical and economic burden., Conclusions: This study identified the multiple sources of dissatisfaction with specialized inpatient palliative care for bereaved families. These findings could be useful in developing a more desirable system of specialised inpatient palliative care.

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.

Delirium is a frequent symptom of terminally ill cancer patients and can cause serious distress to family members. To clarify the degree of emotional distress of family members concerning terminal delirium, a survey of bereaved families was performed. A questionnaire was mailed to 300 bereaved families with a request to rate the frequency and level of their distress for 12 delirium-related symptoms. A total of 195 responses were analyzed (effective response rate=65%). Seventy-four percent and 62% of the family members reported that the patients had symptoms of physical restlessness and mood lability, respectively. Psychotic symptoms, such as hallucinations and delusions, were reported by 35%-37%, and somnolence was reported in 92%. The prevalence of cognitive symptoms (e.g., communication difficulty, memory disturbance) ranged between 50% and 72%. More than two-thirds of the bereaved family members perceived all delirium-related symptoms other than somnolence as distressing or very distressing when they occurred "often" or "very often." For physical restlessness, mood lability, and psychotic symptoms that occurred "sometimes," 27%-36% of the family members had moderate to high levels of distress. The bereaved family members of terminally ill cancer patients experienced high levels of distress from both the agitation and cognitive symptoms of terminal delirium. Multidisciplinary interventions, including the prevention of agitation and the minimization of cognitive impairment, pharmacological or medical treatments, and supportive and psychoeducational approaches for family members, are needed to alleviate family distress.

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.