Association and Contribution of Patient and Bereaved Family Background to Outcomes of Survivor Surveys

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.

Development of Authorized Translation of “WHO Definition of Palliative Care”: Collaboration of 18 Academic Medical Societies in Japan Using Delphi Method

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.

Recognition of End-of-life Care by Nursing Care Staff, and Factors Impacting Their Recognition: An Exploratory Research Using Mixed Methods

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.

The Effect of Continuous Subcutaneous Infusion of Chlorpromazine on Refractory Delirium in Advanced Cancer: Retrospective Study

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.

How Should ICDs Be Stopped in the Terminal Phase of Cancer?: Five Cases of Patients in a Palliative Care Unit

<p>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. </p>

Nationwide Survey on Complementary and Alternative Medicine (CAM) in Cancer Patients Who Died at Palliative Care Units in Japan: Prevalence of CAM and Family Experience

<p>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.</p>

Exploratory Qualitative Study of Regret Stemming from Ending Terminal Treatment and Psychological Coping among the Bereaved Family Members of Cancer Patients: What Does the Family Regret about Terminal Treatment Choices and Why?

<p>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.</p>

Practical Use of Feedback Report of Nationwide Bereavement Survey in Participated Institutions

<p>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.</p>

Why Patients in Institutions with Religious Background Achieve ‘Good Death’ ? : Findings from National Bereavement Survey of 127 Hospice and Palliative Care Units

<p>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’.</p>

Frequency of Serious Adverse Skin Reactions Caused by Continuous Subcutaneous Administration of Psychotropic Drugs

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.

A Second Time Nationwide Survey of Quality of End-of-Life Cancer Care in General Hospitals, Inpatient Palliative Care Units, and Clinics in Japan: The J-HOPE 2 Study

<p>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.</p>

Family evaluation about caring the body of deceased patient by nurses in Japanese inpatient hospices

<b>Objectives:</b> Primary aim of this study was to clarify the family evaluation about caring the body of the deceased patient by nurses at Japanese inpatient hospices and palliative care unit. <b>Method:</b> A mail survey was performed on 958 bereaved family members of 103 palliative care units in July, 2010.<b> Result:</b> A total of 597 family members replied（62％）. As a whole, 441（74％）families reported that they were satisfied with the way caring the body of the deceased patient by nurses. A multivariate analysis revealed three factors were significantly associated with the levels of satisfaction:the patient face became peaceful and calm, and nurses treated the patient in the same way before died, and patient age was over 70 years old. <b>Conclusion:</b> Making patient face peaceful and calm, and treating the patient in the same way before died is important in caring the body of the deceased.

Family experience and evaluation about caring the body of deceased patient in Japanese inpatient hospices: a content analysis of free comments in questionnaire survey

Objectives: Primary aim of this study was to clarify the experience and evaluation of families who about caring the body of the deceased patient by nurses at Japanese inpatient hospices and palliative care unit. Method: A mail survey was performed on 958 bereaved family members of 103 palliative care units. A total of 598 family members replied. This study was content analysis about free comments in the questionnaire. Result: A total of 301 comments from 162 questionnaires were identified as the subjects for content analysis. The family was experience satisfaction or dissatisfaction about the way caring the body of the deceased patient. The family felt hesitation and worries about caring the body of deceased patient. A content analysis revealed 3 underlying themes: the family evaluate as a good experience, the family evaluate as an unpleasant experience, the family evaluate as an experience of hesitation and worries. Conclusion: The family was satisfied about treating the patient in the same way before died, making patient face beautiful and calm, facilitates family’s preparation. When nurses recommend families to care the body of deceased patient, which become memorably experience, and they come to be get over sorrow after the bereavement. But they need to confirm the family’s preparation and choose what they can do.

A case report of intractable nausea due to zoledronic acid-refractory hypercalcemia treated with denosumab

Introduction: We report a case of intractable nausea due to zoledronic acid-refractory hypercalcemia for which the nausea was alleviated with denosumab, thereby improving quality of life. Case: A 54-year-old woman presented with metastatic renal pelvis cancer. Elevation of serum calcium level and nausea were noted. After multiple antiemetics were administered with no appreciable symptomatic improvement, treatment with zoledronic acid resulted in a decrease in the calcium level and an improvement of nausea from Japanese version Support Team Assessment Schedule （STAS-J） 3 to 1. After the third dose of zoledronic acid, the corrected calcium level was 11.8 mg/dl, indicating refractory. Because no improvement in nausea was noted, treatment with denosumab was initiated. After the treatment, the calcium level decreased to 9.4 mg/dl, and nausea improved from STAS-J 4 to 0. The patient could spend good time with her family, albeit for a short time, and no progression of the symptoms or adverse events due to denosumab occurred until her death. Discussion: Denosumab appears to be useful for improvement of intractable nausea in zoledronic acid-refractory hypercalcemia.

Usefulness of stepwise opioid switching to methadone: a case report

<b>Introduction:</b> The use of methadone in Japan is limited to cases being switched from the preceding use of strong opioids; the stop-and-go strategy is recommended in which the previously used opioid analgesic is discontinued and methadone is initiated at its full estimated dosage. <b>Case:</b> Refractory cancer pain due to an iliolumbar syndrome was temporarily exacerbated by the stop-and-go switching to methadone from morphine along with ketamine. Pain relief was achieved upon readministration and concomitant use of morphine with methadone after approximately two weeks. <b>Discussion:</b> Through examining this case, we believe that a stepwise switching strategy, rather than the stop-and-go strategy, could be more useful. Considering that overdosage may cause side effects, it is safer to initiate methadone with a small dose. However, more studies need to be conducted to decide whether the establishment of the initial dosage and dosage adjustment should be made more flexible to avoid pain intensification. Further investigation is required on whether the concomitant use of adjuvant analgesics such as ketamine, which similar to methadone is an NMDA receptor antagonist, should be continued when switching to methadone.

Effects of organization-related variables on evaluation of palliative care by informal caregivers

<b>Purpose: </b>The aim of this study was to clarify the factors contributing to the evaluation of perceived care in inpatient palliative care services from the aspect of informal caregiver after their loss of the patient to cancer. <b>Method: </b>A questionnaire was mailed to 9,684 bereaved subjects who had lost family members at one of 103 palliative care units in Japan to evaluate their sociodemographic characteristics and the evaluation of perceived care. An institution survey was performed to collect organization-related variables. The evaluation of perceived care was rated by the Care Evalutaion Scale (CES), the Good Death Inventory (GDI) and single item of overall satisfation. <b>Result: </b>A total of 5,810 responses were analyzed (response rate＝60％). Uni-variate and multivariate analysis was performed to clarify the determinants of each scale. Significant determinants of the score in the evaluation of care identified were: the rate of private room (100％), independent facility, palliative care physician being night-time duty, the number of nurses at night (＞0.1 per bed), sending a letter to every bereaved family, holding a memorial services for every bereaved family and having a religious background. <b>Conclusion: </b>In conclusion, the evaluation of palliative care from the aspect of informal caregiver was influenced by various organization-related variables.

The feature of blepharospasm and relevance with agonal facies in the Palliative Care Unit

<b>Purpose</b>: Blepharospasm is a condition characterized by abnormal contractions or twitching of the eyelid due to excessive contractions of the orbicular muscle. The purpose of the present study was to clarify the prevalence and severity of blepharospasm in end-term cancer patients and to clarify the correlation between agonal facies and angor animi or blepharospasm. <b>Method</b>: Diagnoses were made using the Wakakura method and the nictitating stress test, and the severity of the condition was evaluated on the basis of a palpebral dystonia grade classification system. In this positive observational study, all patients were hospitalized in our institution between October and December 2010. <b>Result</b>: Of the 51 evaluations, 19 (37.3%) were diagnosed with blepharospasm, and the severity of nine was ≥3 according to a five-point grading scale. Many cases were treated using antipsychotics or benzodiazepine, and an improvement was observed in all the seven cases that had medication adjustments. Diagnostically, there was no correlation between glabellar lines and pain. Agonal facies in end-term cancer patients included elements of blepharospasm in addition to angor animi. <b>Conolusion</b>: Blepharospasm frequently occurred in patients admitted in the palliative care unit, and it decreased their quality of life. It is important to evaluate this condition and to consider medication adjustments.

Complicated grief, depressive symptoms, and suicidial ideation among the bereaved whose family member died at palliative care units

<b>Objectives</b>: 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. <b>Methods</b>: 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). <b>Results</b>: 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. <b>Conclusion</b>: 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.

Evaluations and needs of bereavement services among the bereaved whose family member died at palliative care units

<b>Objectives</b>: 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. <b>Methods</b>: 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). <b>Results</b>: 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. <b>Conclusion</b>: 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.

Decadal trends in the structure and usage status of palliative care units in Japan and the association with length of stay

<b>Background</b>: The aim of this study was to clarify the decadal trends in the structure and usage status of palliative care units in Japan and the association with length of stay. <b>Methods</b>: We conducted a secondary analysis of data from nationwide surveys of palliative care units conducted by Hospice Palliative Care Japan from 2002 to 2012. Length of stay was divided into three categories (within 30 days, 31 to 60 days, and 61 days or more). <b>Results</b>: Significant decadal trends in usage status were observed: the mean annual number of admitted patients (119±55 persons in 2001, 163.0±77.7 in 2011, <i>p</i>＜0.001), and deaths (99±44, 136±58, <i>p</i>＜0.001) increased and the mean length of stay in a palliative care unit (8±15 days, 39±15, <i>p</i>＜0.001) decreased. Palliative care units with a shorter mean length of stay had significantly more admitted patients, and more discharged patients, and a significantly lower mean ratio of death to discharge, and a lower bed availability rate. In contrast, length of stay was not significantly associated with the structure of palliative care units, including the type of units, number of inpatient beds, percentage of private rooms, and number of staff. <b>Conclusion</b>: The features of decadal trends in the structure and usage status of palliative care units in Japan were a shortening of length of stay, and an increase in the number of patients. Palliative care units with a shorter mean length of stay cared for a larger number of terminally ill patients.