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Background: There is limited knowledge regarding the quality of dying and death (QODD) and end-of-life interventions in patients with interstitial lung disease (ILD). Hence, differences in QODD and end-of-life interventions between patients with ILD and those with lung cancer (LC) remain poorly understood., Methods: The primary aim of this study was to explore the differences in QODD and end-of-life interventions among patients dying with ILD versus those dying with LC. We performed a mail survey to quantify the QODD of a bereaved family's perspective using the Good Death Inventory (GDI) score. Moreover, we examined the end-of-life interventions by medical chart review., Results: Of 361 consecutive patients analysed for end-of-life interventions, 167 patients whose bereaved families completed questionnaires were analysed for QODD. Patients with ILD had lower GDI scores for QODD than those with LC (p=0.04), particularly in domains related to 'physical and psychological distress relief' and 'prognosis awareness and participation in decision making' (p=0.02, respectively). In end-of-life interventions, patients with ILD were less likely to receive specialised palliative care services (8.5% vs 54.3%; p<0.001) and opioids (58.2% vs 73.4%; p=0.003). Additionally, lower frequencies of participation of patients with ILD in end-of-life discussion were also observed (40.8% vs 62.4%; p=0.007)., Conclusion: Patients with ILD had lower QODD and poorer access to palliative care and decision making than those with LC. Additional efforts to improve QODD in patients with ILD, particularly in symptom relief and decision-making processes, are urgently warranted., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

This study develops and examines the validity and reliability of 2 scales, respectively, for evaluating nursing care and the experience of difficulties providing nursing care for dying patients with cancer and their families. A cross-sectional anonymous questionnaire was administered to nursing staff caring for dying patients with cancer and their families in 4 general hospitals and a university hospital in Japan. The instruments assessed were the Nursing Care Scale for Dying Patients and Their Families (NCD) and the Nurse's Difficulty Scale for Dying Patients and Their Families (NDD). Of the 497 questionnaires sent to nurses, 401 responses (80%) were analyzed. Factor analyses revealed that the NCD and NDD consisted of 12 items with 4 subscales: "symptom management," "reassessment of current treatment and nursing care," "explanation to family," and "respect for the patient and family's dignity before and after death." These scales had sufficient convergent and discriminative validity, sufficient internal consistency (α of subscales: NCD, 0.71-0.87; NDD, 0.74-0.93), and sufficient test-retest reliability (intraclass correlation coefficient of subscales: NCD, 0.59-0.81; NDD, 0.67-0.82) to be used as self-assessments and evaluation tools in education programs to improve the quality of nursing care for the dying patients and their families.

Objective:: There are no instruments evaluating the processes and outcomes of dying care right before and after death. Therefore, we developed and examined the validity and reliability of 2 scales for evaluating dying care processes and outcomes before and after death., Methods:: A cross-sectional, anonymous questionnaire was administered to bereaved family members of patients with cancer who had died in 5 facilities. We evaluated the Dying Care Process Scale for Bereaved Family Members (DPS-B) and the Dying Care Outcome Scale for Bereaved Family Members (DOS-B) with 345 bereaved family members., Results:: A factor analysis revealed that DPS-B and DOS-B each consisted of 4 subscales. For the DPS-B, they were "symptom management," "respect for the patient's dignity before and after death," "explanation to the family," and "family care." For the DOS-B, they were "peaceful dying process for the patient," "being respected as a person before and after death," "good relationship between the patient and family," and "peaceful dying process for the family." Both DPS-B and DOS-B had sufficient convergent and discriminative validity, sufficient internal consistency (DPS-B: α = 0.91 and subscales' αs = 0.78-0.91; DOS-B: α = 0.91 and subscales' αs = 0.78-0.94), and sufficient test-retest reliability (DPS-B: intraclass correlation coefficient [ICC] of total score = 0.79 and subscales = 0.55-0.79; DOS-B: ICC of total score = 0.88 and subscales = 0.70-0.88)., Significance of Results:: Both DPS-B and DOS-B are valid and reliable scales for evaluating the dying care processes and outcomes before and after death from the bereaved family members' perspectives.

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.

Background: The Care Evaluation Scale (CES1.0) was designed to allow bereaved family members to evaluate the structure and process of care, but has been associated with a high frequency of misresponses. The objective of this study was to develop a modified version of CES1.0 (CES2.0) that would eliminate misresponses while maintaining good reliability and validity., Methods: We conducted a cross-sectional questionnaire survey by mail in October 2013. The participants were bereaved family members of patients who died from cancer in seven institutions in Japan. All family members were asked to complete CES2.0, the short form CES1.0, items on overall care satisfaction, the Family Satisfaction with Advanced Cancer Care (FAMCARE) Scale, the Patient Health Questionnaire-9 (PHQ-9) and the Brief Grief Questionnaire (BGQ). To examine test-retest reliability, all participants were asked to complete a second CES2.0., Results: Of 596 questionnaires sent, 461 (77%) were returned and 393 (66%) were analyzed. In the short form CES1.0, 17.1% of the responses were identified as misresponses. No misresponses were found in CES2.0. We identified 10 CES2.0 subscales similar to those in CES1.0 using exploratory factor analysis. Cronbach's alpha was 0.96, and the intraclass correlation coefficient was 0.83. Correlations were found between CES2.0 and overall satisfaction (r = 0.83) and FAMCARE (r = 0.58). In addition, total CES2.0 scores were negatively correlated with the PHQ-9 (r = -0.22) and BGQ (r = -0.10)., Conclusion: These results suggest that CES2.0 eliminated misresponses associated with CES1.0 while maintaining good reliability and validity and greatly improving test-retest reliability.

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.)

Context: The sense of security scale was developed to indicate care quality within the community. Bereaved families have perspective to evaluate the quality of the care system., Objectives: The aim was to examine associations between end-of-life care and sense of security regarding regional cancer care among bereaved families., Methods: A cross-sectional population-based survey was conducted with families of cancer patients who died in regional areas of Japan., Results: A total of 1046 family caregivers of patients responded to surveys (effective response rate of 65%). In multiple regression analyses, the families' higher age (P < 0.001), home death (P = 0.039), better health status of the family at patients' end of life (P = 0.016), lower caregiving burden (P < 0.001), and elements of perceived good patient death, including being free from physical distress (P < 0.001), trusting the physician (P < 0.001), living in calm circumstances (P = 0.042), and feeling that one's life was fulfilling (P = 0.035), were associated with a higher sense of security., Conclusion: Quality of death and lower burden on family caregivers were associated with families' sense of security. This suggests strategies for improving care quality for each patient to improve the sense of security., (Copyright © 2016 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.)

Context: Most people hoped for home care at the end of life and death at home in Japan. However, the rate for death at home from cancer in Japan is less than 10% of the total deaths of cancer patients., Objectives: The aim of this study was to investigate circumstances, difficulties, and correlated factors for family caregivers who provided care at home for a family member with terminal cancer., Methods: The Family's Difficulty Scale for end-of-life home care questionnaire was sent to 395 bereaved family caregivers who had cared for a terminal cancer patient with the assistance of home services., Results: We obtained 306 responses for a response rate of 81%. The results showed that family caregivers had a high rate of difficulties related to "Patient's pain and condition" (64%~90%) and "Burden of care" (61%~78%). A logistic regression analysis was performed on the data to examine factors related to the difficulties. More difficulties occurred for male caregivers (odds ratio [OR]=0.39, P=0.04) who did not prefer for the patient to die at home (OR=0.42, P=0.01)., Conclusion: This study indicates that it is important for home care providers to introduce services to reduce care burden. In addition, a thorough explanation of the patient's symptoms and condition is necessary to reduce distress and anxiety for family caregivers., (Copyright © 2012 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.

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: Although it is important to achieve a good death in Japan, there have been no studies to explore factors associated with a good death. The aim of this study was to explore factors contributing to a good death from the bereaved family members' perspectives, including patient and family demographics and medical variables., Methods: A cross-sectional anonymous questionnaire survey for bereaved family members of cancer patients who had died in a regional cancer center and a medical chart review were conducted. We measured the results from the Good Death Inventory and family demographics. In addition, we extracted patient demographics, medical variables, and medical interventions in the last 48 h before death from a medical chart review., Results: Of the 344 questionnaires sent to bereaved family members, 165 responses were analyzed (48%). We found, first, that death in the palliative care unit was more likely to be described as a good death compared with death on a general ward. Some significant characteristics were 'environmental comfort,' 'physical and psychological comfort,' 'being respected as an individual,' and 'natural death.' Second, we found that a patient's and family member's age and other demographic factors significantly correlated with an evaluation of a good death. In addition, life prolongation treatment and aggressive treatment such as chemotherapy in the last 2 weeks of life were barriers to attainment of a good death. Moreover, appropriate opioid medication contributed to a good death., Conclusion: Withholding aggressive treatment and life-prolonging treatment for dying patients and appropriate opioid use may be associated with achievement of a good death in Japan.

The aim of this study was to develop a measure for evaluating good death from the bereaved family member's perspective, and to examine the validity and reliability of the assessment. A cross-sectional anonymous questionnaire was administered to bereaved family members of cancer patients who had died in a regional cancer center from September 2004 to February 2006. We measured the Good Death Inventory (GDI), Care Evaluation Scale, and an overall care satisfaction scale. A retest was conducted one month after sending the questionnaire. Of the 344 questionnaires sent to bereaved family members, 189 responses were analyzed (57%). A factor analysis of the responses to the GDI identified 10 core domains: "environmental comfort," "life completion," "dying in a favorite place," "maintaining hope and pleasure," "independence," "physical and psychological comfort," "good relationship with medical staff," "not being a burden to others," "good relationship with family," and "being respected as an individual." Eight optional domains also were identified: "religious and spiritual comfort," "receiving enough treatment," "control over the future," "feeling that one's life is worth living," "unawareness of death," "pride and beauty," "natural death," and "preparation for death." The GDI had sufficient concurrent validity with the Care Evaluation Scale and overall care satisfaction, sufficient internal consistency (alpha=0.74-0.95), and acceptable test-retest reliability (ICC=0.38-0.72). Finally, we developed a short version of the GDI. The GDI is a valid scale to measure end-of-life care comprehensive outcomes from the bereaved family member's perspective in Japan.

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: 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]