A secondary analysis of data from national bereavement surveys conducted in 2014, 2016, and 2018 was conducted with the aim of identifying the contribution of various patient and bereavement backgrounds to the outcomes of the Bereavement Survey. The data were evaluated in terms of structure and process of care (CES), achievement of a desirable death (GDI), complexity grief (BGQ), and depression (PHQ-9). The large data set and comprehensive analysis of bereavement survey outcomes clarified the need for adjustment of confounding variables and which variables should be adjusted for in future analyses. Overall, the contribution of the background factors examined in this study to the CES (Adj-R2=0.014) and overall satisfaction (Adj-R2=0.055) was low. The contribution of the GDI (Adj-R2=0.105) was relatively high, and that of the PHQ-9 (Max-rescaled R2=0.200) and BGQ (Max-rescaled R2=0.207) was non-negligible.

Objective: To create an authorized translation of the “definition of palliative care” according to WHO using the Delphi method. Methods: Through a palliative care association council (hereafter referred to as the “council”) composed of 18 academic organizations, this research aimed to create an authorized translation draft and develop a consensus for it using the Delphi method according to 54 experts, three from each organization. The main clause and nine subordinate clauses of the document were evaluated from “not at all appropriate” (1 point) to “completely appropriate” (9 points). The standard for consensus was if the median was 7 points or above, or if there was a difference of 5 points or less between the maximum and minimum. The council created an authorized translation in light of the consensus status. Results: Three rounds of the Delphi method were performed; the response rates were 100%, 93%, and 91% respectively. As 30% of the clauses reached the predetermined standard for consensus, the council discussed and considered, established an authorized translation draft, and made a decision upon public comment from each academic organization. Conclusion: Academic organizations associated with palliative care jointly created an authorized translation for the “definition of palliative care” according to WHO.

Context: Delirium in cancer is often difficult to control and refractory when haloperidol is invalid which is considered standard therapy. We need second and subsequent-line therapy to reduce hyperactivity and not to over-sedation for refractory delirium. Objectives: To investigate the efficacy and safety of continuous subcutaneous infusion chlorpromazine on delirium refractory to first-line antipsychiatric medications in advanced cancer palliative care setting. Method: The study population consisted of patients who received continuous subcutaneous infusion chlorpromazine for delirium at two certified PCU. Primary endpoint was the proportion of patients who showed improvements in delirium severity by Delirium Rating Scale Revised 98 score of less than 13 or decrease from baseline and maintained the ability to communicate coherently by Communication Capacity Scale Item-4 score of 2 or less. Secondary outcome were the Nursing Delirium Screening Scale subscale score, and injection site reactions evaluated according to the Common Terminology Criteria for Adverse Events. These outcome measures were assessed at baseline, 48 hours and 7 days after the start of the study. Result: Among eighty-four patients, sixty were positive responders (71.4%, 95% CI [61–80]). The mean CCS Item-4 scores significantly decreased from the baseline value of 1.48 (range 0–3) to 1.03 (range 0–3) at post-treatment (p<0.001). Grade 2 or higher injection site reactions were observed in 1 patient (1.2%, 95% CI [0–7]). Conclusion: Our study suggested that continuous subcutaneous infusion chlorpromazine could improve refractory delirium symptoms and patients’ communication capabilities. Although most of the skin disorders observed in association with chlorpromazine were mild, their incidence rates were relatively high, suggesting the need for careful monitoring.

Objectives: Elucidate recognition of end-of-life care by nursing care staff in elderly care facilities, and factors influencing such recognition. Methods: We conducted an internet questionnaire with 500 nursing care staff working at elderly care facilities across Japan, and an interview with 10 nursing care staff out of 500. Results: In the questionnaire, facility policies (41%) and cooperation with medical staff (38%) were selected as facilities and systems that are important for end-of-life care, and as a concern, sudden change in the condition of the patient, leading to death (53%) was selected. The interview showed that nursing care staff had a certain level of anxiety regardless of their experience with end-of-life care, with participants discussing their thoughts on how systematic learning of, and actual experience in, end-of-life care changed end-of-life care. Conclusion: Our study showed that systematic learning and experience of end-of-life care were important factors in recognition of end-of-life care by nursing care staff when providing such care in elderly care facilities.

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’.

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. 

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.

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.

Continuous subcutaneous injections of medication are effective in controlling symptoms of the terminal stage of cancer. Chlorpromazine and levomepromazine occasionally cause skin irritation. We examined all patients who underwent continuous subcutaneous administration of psychotropic drugs (chlorpromazine, levomepromazine, midazolam) at the palliative care unit of our hospital from April 2010 to March 2013, the frequency of adverse skin reactions of Common Terminology Criteria for Adverse Events (CTCAE) v4.0 grade 3 or above. Of the 603 hospitalized patients, 389 (64.5%) underwent continuous subcutaneous administration of one of the three drugs. The frequency of grade 3 or above (ulceration or necrosis) adverse skin reactions was 4 out of 345 chlorpromazine cases (1.2%; 95% CI: 0.0-2.3%), 2 out of 90 levomepromazine cases (2.2%; 95% CI: −0.8-5.2%), and 0 out of 210 midazolam cases (0.0%; 95% CI: 0.0-0.0%). The frequency of serious adverse skin reactions caused by continuous subcutaneous administration of psychotropic drugs was low, suggesting that this treatment is relatively safe for the skin.