From January 2015 to January 2017, we encountered five terminal cancer patients with implantable cardioverter defibrillators (ICDs) in the palliative care unit of our hospital. Due to delirium or dementia, four of these five patients did not have the decision-making capacity to stop their ICD. Although one patient was capable of making his own decisions, his family did not agree with the medical professional considering the patient’s decision. The families of all five patients made decisions on behalf of the patients. The procedure for stopping the ICD was first discussed with the families at 2–21 days prior to the patients’ deaths. The ICDs were stopped between 3 h and 11 days prior to the patients’ deaths, following the consent of the families, which was obtained after 1–5 consultations. Through these experiences, we became aware of the following problems with regard to stopping ICDs: (1) the lack of experience of medical professionals in decision-making, (2) the lack of recognition of medical professionals to the distress caused to patients by ICDs, (3) the psychological burden and time constraint of discussions, and (4) the lack of knowledge of ICDs among patients and their families. These problems need to be addresses as part of advance care planning for cancer patients. 

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.

Background: The need for palliative care is increasing, and psychological care for cancer patients has been recognized to have an important role in palliative care. Purpose: To determine the medical knowledge and skills (especially in psychiatry) required in palliative care and to propose psychiatric training for palliative care education. Subjects/Methods: Using a questionnaire, palliative care doctors (working less than 3years) and nurses were asked their opinions on the necessity of palliative care and requested to self-evaluate their knowledge and skills in palliative care. Results: The survey revealed that many doctors and nurses felt the need for an "Interdisciplinary team approach" "Good communication with patient and family", an "Understanding of total pain" and "Listening". Palliative care doctors had low self-evaluations of their psychiatric knowledge and skills with regard to palliative care, but they recognized the necessity for greater knowledge and skills in this area. Conclusions: In a palliative care setting, it is important to establish training programs for consultation-liaison psychiatry that provide opportunities for learning about psychiatric practices, including diagnostic evaluation, psychotherapeutic and pharmacologic treatment, as well as skills for communicating with cancer patients, families and staff. Palliat Care Res 2009: 4(1): 101-111

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.

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’.

The aim of this study was to understand the use of complementary and alternative medicine (CAM) in cancer patients in Japan. This study was part of the Japan Hospice and Palliative care Evaluation 2016 (J-HOPE2016) Study. A multicenter questionnaire survey was conducted on a sample of bereaved family members of cancer patients who died at palliative care units. Data suggest that 54% of cancer patients use CAM. In comparison with a previous study in 2005 in Japan, categories of CAM vary widely; CAM previously included supplements mostly, but now exercise and mind and body therapy are also used. Most cancer patients use CAM without any harmful influence on their household economy and cancer treatment; however, in some patients, CAM incurs a large expense and a delay in starting cancer treatment. Therefore, it is important for medical staff and patients to have an opportunity to discuss CAM use. Multiple logistic regression analysis shows that CAM use is significantly associated with younger patients and highly educated families; moreover, there is a possibility that family members who use CAM have a high level of psychological distress. We must pay attention to the physical and the psychological aspects of cancer patients who use CAM and their families. Further studies are needed to investigate the use of each category of CAM, and to understand patients who use CAM and who die at home or in hospitals other than palliative care units.