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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.)

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.)

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.)

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.)

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.

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.)

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.)

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.

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.)

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.

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.

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: 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]

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]

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]