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This study examined differences in sociodemographic characteristics and the achievement of a good death between cancer patients who live alone and those who do not live alone prior to death in different settings. Secondary analysis of data collected across two cross‐sectional self‐reported questionnaire surveys was undertaken. The participants were bereaved family members of cancer patients who had died in palliative care units (PCUs), acute hospitals or homes. We stratified the data by the place of death and examined the differences in sociodemographic characteristics to determine the relationship between cancer patients achieving a "good death" and whether they were living alone. The data were collected through 15,949 surveys. On the Good Death Inventory, significantly higher total scores emerged for cancer patients who were living alone than for those who not living alone in PCUs (effect size [ES] = 0.11, Student's t‐test: p <.0001), but not in acute hospitals (ES = −0.03, p = 0.74) or home care services (ES = 0.02, p = 0.86). Cancer patients who were living alone were more likely to have been female, been older and have earned a lower annual income than those who were not living alone. Thus, among those who had received specialized palliative care, there was no difference in the quality of palliative care between cancer patients who were or were not living alone. [ABSTRACT FROM AUTHOR]

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

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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

Context: In end-of-life care, rehabilitation for patients with cancer is considered to be an important means for improving patients' quality of death and dying.Objectives: To determine whether the provision of rehabilitation for patients with cancer in palliative care units is associated with the achievement of a good death.Methods: This study involved a cross-sectional, anonymous, and self-report questionnaire survey of families of patients with cancer who died in palliative care units in Japan. We evaluated the short version of Good Death Inventory (GDI) on a seven-point scale. A logistic regression model was used to calculate the propensity score. Covariates included in this model were survey year, patients' characteristics, and families' characteristics. The associations between rehabilitation and GDI were tested using trend tests after propensity score matching adjustment.Results: Of the 1965 family caregivers who received the questionnaires, available data were obtained from 1008 respondents (51.2%). Among them, 285 (28.2%) cases received rehabilitation in palliative care units. There was no difference in total GDI score between the groups with and without rehabilitation. In exploratory analyses, patients receiving rehabilitation were significantly more likely to feel maintaining hope and pleasure (mean 4.50 [SE 0.10] vs. 4.05 [0.11], respectively; effect size [ES] 0.31; P = 0.003), good relationships with medical staff (mean 5.67 [SE 0.07] vs. 5.43 [0.09], respectively; ES 0.22; P = 0.035), and being respected as an individual (mean 6.08 [SE 0.06] vs. 5.90 [0.07], respectively; ES 0.19; P = 0.049) compared with patients not receiving rehabilitation.Conclusion: Rehabilitation in palliative care units may contribute to several domains of quality of death and dying, particularly maintaining hope and pleasure. Further research is needed to investigate whether palliative rehabilitation contributes to the achievement of a good death. [ABSTRACT FROM AUTHOR]

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

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

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

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

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

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