Objectives: The aim of this study is to explore prevalence and determinants of complicated grief, depressive symptoms, and suicide ideation among the relatives whose family members died in palliative care units. Methods: A multicenter questionnaire survey was conducted on a sample of bereaved family members of cancer patients who were admitted to palliative care units in Japan. Participants completed self-report questionnaire including the Center for Epidemiologic Study Depression Scale (CES-D), Inventory of Traumatic Grief (ITG), the item concerning suicide ideation, Care Evaluation Scale (CES), and Good Death Inventory (GDI). Results: Of the 653 questionnaires sent to bereaved family members, 451 responses were analyzed (response rate: 67%). The results showed 10 (2.3%) respondents with complicated grief and 153 (43.8%) with depressive symptoms. Suicide ideation was appeared among 52 (11.9%) respondents. Multiple regression analysis revealed that ITG was signicicantly associated with both CES and GDI. Patiens' age at death and pre-bereavement health contributed to the suicide ideation of the bereaved family members. Conclusion: The prevalence of complicated grief and depressive symptoms among the relatives whose family members died in palliative care units were 2.3% and 43.8%, respectively. The rates of suicide ideation was 11.9% of respondents. The results suggested that the evaluations about structure and process of palliative care, and quality of death contribute to better adjustment of the bereaved.

Objectives: The purpose of this study is to clarify evaluations and needs of bereavement services among the bereaved whose family member died at palliative care units. Methods: A multicenter questionnaire survey was conducted on a sample of bereaved family members of cancer patients who were admitted to palliative care units in Japan. Participants completed self-report questionnaire including the items concerning bereavement services provided by palliative care units and other resources, and the Center for Epidemiologic Study Depression Scale (CES-D). Results: Of the 661 questionnaires sent to bereaved family members, 451 responses were analyzed (response rate: 68%). The results revealed that 49% of respondents received "memorial cards". Bereavement services were evaluated positively by 88-94% of respondents. The bereaved relatives with higher level of depressive symptoms signicicantly asked for bereavement services. Conclusion: These findings did not suggest the efficacies of some beravement services provided by a specified unit, but that of each service itself at palliative care units. And this result supported the notion that all the bereaved did not equally want any beravement services.

Periodic evaluation of end-of- life (EOL) palliative care is important to maintain and improve quality of EOL palliative care. We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members of cancer patients in 2010. This was the second time nationwide survey. This study aimed to evaluate EOL cancer care from the perspective of bereaved family members in nationwide general hospitals, inpatient palliative care units (PCUs), and home hospices in Japan and to explore whether there is any change of quality of palliative care over the last nationwide survey conducted in 2007. Among member facilities of Hospice Palliative Care Japan, 25 general hospitals, 103 PCUs, 14 clinics participated in this study and 7797 bereaved family members answered the questionnaire. Overall, bereaved family members were satisfied with EOL care in all places of death, as in the last survey. Although results indicated that coordination of care and physical care of nurse were warranted to improve in general hospitals, drawback of PCUs were availability and the potential deficits of clinics were the environment. Through the years, there is no clinically significant change from the last survey. We should continue to make efforts to evaluate and monitor palliative care in Japan for quality control.

Aims: The aim of this study was to clarify practical use of feedback report in each institution participated the nationwide bereavement survey (J-HOPE3). Methods: After a nationwide bereavement survey (J-HOPE3) conducted in 2014, we sent a feedback report to each participated institution (20 general wards, 133 inpatient palliative care units, and 22 home hospice services). The feedback report included the results from quality of care, bereaved family’s mental status, and free comments from the participant of their own institution. We sent a questionnaire 4 month following to the feedback report for all institutions regarding the practical use of results from the feedback report. Results: The analysis included 129 (response rate 74%) returned questionnaires. The institutions that they passed around the report was 90%, discussed about their results at a staff meeting was 54%, and reported the results to manager/chief of the institution was 65%. Around 80% of the institutions responded positively to receive the feedback report of their own institution such as “It was good that they could understand the strengths and weakness of their own institutions” which reported that they worked on to improve care were 48%. Conclusions: Current study had shown data about practical use of the feedback report of bereavement study. It is important to feedback the results and encourage the institution to make use of the results in their daily practice, especially to discuss the results in staff meetings.

Previous study reported that patients of institutions with religious background are more likely to achieve ‘good death’ than patients in non-religious institutions, although the reasons are unclear. This study aims to examine the reasons for this difference using a national survey of religious and non-religious institutions. We sent a self-administered questionnaire to 10,715 bereaved family caregiver and 133 hospice and palliative care units which cared for their family members prior to death. The questionnaire for bereaved families included the Good Death Inventory (GDI). The questionnaire for institutions included their religious affiliation and their subjective and objective provided care. In total, 7,286 bereaved families (68%) and 127 (95%) institutions including 23 religious end-of-life care institutions responded. We performed t-test and χ-square test to compare the GDI scores and provided care for religious and non-religious end-of-life care institutions. The GDI total score was significantly higher (p=0.01) in religious institutions compared to non-religious institutions. Items such as “providing many activities for seasonal events to the patients”, “providing more bereavement care”, “having facilities to practice their religion”, and “having regular visits from religious leaders”, were all reported more frequently in the religious institutions, and significantly associated with achievement of ‘good death’ (p<0.05 for all items). This study suggests that factors for achieving ‘good death’ are not only limited to providing religious care but also providing other forms of care, services, and activities that can enhance the patients’ ‘good death’.

Objectives: This study aimed to describe the experiences of bereaved family members of cancer patients in terms of regret in relation to ending terminal treatment for the patient. Methods: We conducted a semi-structured qualitative interview of 37 bereaved family members regarding their decision-making and their psychological adjustment from the time they made the decision to terminate treatment. Interviews were analyzed using qualitative content analysis. Results: Approximately 40% of bereaved family members reported that they had some regrets about their decision. Regret contents were classified into 8 categories and diversified from 4 categories at the time of decision-making to 7 categories after the death. The reasons for regret were classified into 43 categories. Common factors that minimized regret included situations at the time when they made the decision, such as patient- and family-specific factors and relationship with the medical staff. In comparison, the common reasons for regret centered on factors related to the approach for decision-making, such as the process, options, as well as psychological coping and relationships with medical staff. Conclusion: The results suggest that regret in the bereaved could be modified by understanding the relationship between regret characteristics and psychological coping.

Understanding the symptoms of the general population has an important role in assessing and improving the quality of palliative care systems. However, there are no reliable epidemiological data on the symptoms of the general population in Japan. The aim of this study was to survey the actual status of the symptoms experienced by the general population in Japan. A large nationwide postal survey was conducted from January through February 2013 in Japan. A total of 2400 subjects were selected randomly from among members of the general population who were 20 to 79 years of age and lived in Japan. The Memorial Symptom Assessment Scale (MSAS) was used to multi-dimensionally evaluate symptoms experienced within the past week, and the Short Form 8™ (SF-8™) was used to assess the health-related quality of life (QOL). A total of 978 (41.1%) self-completed questionnaires were analyzed. The prevalences, severity rates, and distress rates of 35 physical and psychological symptoms were analyzed according to sex and age group. In addition, the relation between symptom severity and the health-related QOL score was evaluated. From the perspectives of public health and administrative policy, the results of this survey will most likely provide important basic data, with the ultimate goal of establishing a palliative care system in Japan.

Purpose: The aim of this study was to clarify the experience of the bereaved families at the time of death of a patient. Methods: A cross-sectional nationwide survey of the bereaved families of cancer patients was performed at 95 palliative care units in Japan in 2007. Results: Of the 670 questionnaires sent to bereaved families, 492 were returned (73%). There were no significant differences between the level of the families' emotional distress and which doctor pronounced the death and whether the doctor was present at the moment of patients' death. Regarding the perceived need for improvement in the care of a dying patient, there were significant differences with respect to which doctor pronounced a patient's death and whether the doctor was present at the moment of a patient's death. There ware no significant differences between the attendance by doctor at the moment of patient's death and no attendance with frequent visit on that day. Conclusion: The bereaved families desire the patient's primary doctor to be present at the time of death and to then pronounce the death. However, the bereaved families consider an appropriate manner as the frequent visit by doctor on patient's last day even if the doctor do not attend at the moment of patient's death. Palliat Care Res 2010; 5(2): 162-170

Cancer patients in terminal phase often feel self-perceived burden to their family and medical staff. The self-perceived burden should be alleviated, though needed care has not been fully investigated. This study aimed to investigate the self-perceived burden of terminal cancer patients and needed care. Semi-structured interviews were conducted for twenty-eight bereaved family members of cancer patients. The results revealed, 1) cancer patients' self-perceived burdens; including eight categories such as “It is distressful to have other people take care of my excretory needs”, 2) cancer patients' self-perceived behaviors to cope with their emotional burdens; including 11 categories such as “Telling the family to give higher priority to their work and plans”, 3) families' feelings and coping behaviors; including 15 categories such as “I thought of the patient's withholding of requests as a consideration for me“, and 4) care required for the patients' self-perceived burden; including nine categories such as “Speaking naturally instead of emphasizing something in particular”. The usefulness of care should be discussed.