Preferences of bereaved family members on communication with physicians when discontinuing anticancer treatment: referring to the concept of nudges.

BACKGROUND: This study aimed to clarify the situation and evaluate the communication on anticancer treatment discontinuation from the viewpoint of a bereaved family, in reference to the concept of nudges. METHODS: A multi-center questionnaire survey was conducted involving 350 bereaved families of patients with cancer admitted to palliative care units in Japan. RESULTS: The following explanations were rated as essential or very useful: (i) treatment would be a physical burden to the patient (42.9%), (ii) providing anticancer treatment was impossible (40.5%), (iii) specific disadvantages of receiving treatment (40.5%), (iv) not receiving treatment would be better for the patient (39.9%) and (v) specific advantages of not receiving treatment (39.6%). The factors associated with a high need for improvement of the physician's explanation included lack of explanation on specific advantages of not receiving treatment (ß = 0.228, P = 0.001), and lack of explanation of 'If the patient's condition improves, you may consider receiving the treatment again at that time.' (ß = 0.189, P = 0.008). CONCLUSIONS: Explaining the disadvantages of receiving treatment and the advantages of not receiving treatment, and presenting treatment discontinuation as the default option were effective in helping patients' families in making the decision to discontinue treatment. In particular, explanation regarding specific advantages of not receiving treatment was considered useful, as they caused a lower need for improvement of the physicians' explanation.

Factors associated with the preparedness for bereavement in families of patients with cancer: A secondary analysis of a nationwide bereaved family survey.

OBJECTIVES: Insufficient preparedness for bereavement can affect a family's psychological health status after bereavement. However, factors associated with preparedness remain unclear. This study aimed to identify factors associated with preparedness for bereavement in families of patients with cancer. METHODS: We conducted a secondary analysis of a nationwide bereaved family survey in Japan, analyzing data from 9123 family members of patients with cancer. Logistic regression analysis was conducted to explore how sociodemographic factors, health status, and perceived care for patients and families were associated with preparedness for bereavement. RESULTS: Of the 9123 families, 1338 (15.1%) were not prepared for bereavement. Factors associated with insufficient preparedness for bereavement (all p < 0.001) were found as follows: patients' spouses (OR = 2.54), receiving care in acute hospitals (OR = 1.83), worse psychological health status during caregiving (OR = 2.13), lower social support for family members (OR = 1.90), wrong patients' awareness of medical condition from family's perspective (OR = 1.75-2.12), family preference of more aggressive treatment rather than palliative care (OR = 1.71) or not sure (OR = 2.31), not wanting to know information about the patient's prognosis (OR = 1.64-1.77), end-of-life discussion with physician 1 month before patient's death (OR = 1.45), and late or early end-of-life discussions with physician and family (OR = 1.78-1.95). CONCLUSIONS: This study's results might assist clinicians in assessing and identifying families who are not prepared for bereavement; however, preparedness for bereavement may have been associated with other factors.

Continuous Electrocardiographic Monitoring for 24 Hours Before Death in Patients with Terminal Cancer.

BACKGROUND: Purposeless physiological monitoring at the end-of-life is not recommended. However, studies on how families feel regarding the death of patients with terminal cancer without continuous electrocardiographic monitoring (CEM) are lacking. OBJECTIVES: To explore the impact on the quality of care and the feelings and psychological distress experienced by families when CEM is not used during the 24 hours preceding a patient's death. METHODS: In this multicenter cross-sectional, self-report questionnaires were distributed to 1087 bereaved families at Japanese specialized palliative care units in 2018. RESULTS: Out of 671 responses, 394 valid responses were analyzed. Families of nonmonitored patients (NM-group) accounted for 79.2%, while those with bedside electrocardiogram monitoring (MB-group) and remote nurse station monitoring (MC-group) comprised 11.9% and 8.9%, respectively. In the NM-group, 85.5% expressed satisfaction without CEM, which was more than 10% lower than other groups. While 14% in the NM-group desired patient monitoring, families who received adequate explanations about CEM had lower proportions compared to the MB-group (P = .021). Univariate analyses showed no significant differences in evaluations of the quality of care and families' psychological distress (mean scores of Overall Care Satisfaction, Care Evaluation Scale, Good Death Inventory, Brief Grief Questionnaires) across all groups. CONCLUSION: While the majority of NM-group were satisfied with their patient's care without CEM, the proportion of dissatisfied families was higher than in other groups. Although not using CEM is not a major hindrance to end-of-life care for patients with terminal cancer, providing sufficient explanations may be important for satisfactory care.

Need for Improvement in Death Pronouncements in Palliative Care Units.

Background: Death pronouncement is an important moment that can impact a family's bereavement process; however, necessary improvements in physicians' behavior during death pronouncement remain unclear. Objectives: To explore whether the lack of certain behaviors by the physician was associated with a perceived need for improving death pronouncement for advanced cancer patients in palliative care units (PCUs). Methods: This study was a secondary analysis of a nationwide multicenter questionnaire survey conducted in 2018 that targeted bereaved family members of cancer patients who died in PCUs. We performed univariate analysis to investigate the need to improve behavior toward death pronouncement. We performed bivariate analysis to investigate the relationship among the need for improvement in behavior toward death pronouncement, physician attribution (primary responsible physician, a member of the same team, and another physician), and nine specific behaviors. Results: Four hundred twenty-two questionnaires (64.2%) were returned. We analyzed 356 responses and found that 32.5% perceived the need to improve death pronouncement. Lack of certain behaviors at death pronouncement, especially not explicitly explaining the cause of death to family members (odds ratio: 11.89, p < 0.001), were positively associated with the need for improvement. There were significant differences among the types of physician attribution regarding the need for improvement (primary responsible physician vs. a member of the same team vs. another physician [15.1% vs. 42.6% vs. 45.7%, p < 0.001]). Conclusion: There was a significant positive association between the lack of certain behaviors toward death pronouncement and the need for improvement. The major lack of behavior toward death pronouncement was not explicitly explaining the cause of death to family members and not calling out to the patient before beginning the patient's examination.

Web-Based Post-Bereavement Survey System in Specialized Palliative Care: A Feasibility Pilot Study.

Web-based post-bereavement survey systems for specialized palliative care will enable obtaining timely results on the care quality from more participants at a lower cost. The primary aim of the study was to develop a web-based post-bereavement survey system and to compare response rates for different number of items. The secondary aim was to examine response bias between web-based and mail survey in post-bereavement surveys. Between January and April 2019, two cross-sectional web-based questionnaire surveys were conducted among the bereaved families from six inpatient palliative care units in Japan. Measurements included structure and process of end-of-life (EOL) care, overall care satisfaction, achievement of a good death, depression, grief status, web survey usability, and participant and bereaved family member characteristics. The long survey included 34 items, and the short survey included 16 items. There were no significant differences in the response rates between the long and short surveys (24% and 27%, respectively, p = 0.376). Compared with a previous nationwide post-bereavement mail survey, more children responded; however, the quality rating scores was unchanged. Despite low response rate, no apparent response bias was observed, indicating its feasibility. This survey method is low-cost, less burdensome to the institution, and allows for ongoing quality assurance.

Nationwide Survey on Caregiver Burden When Supporting Terminal Cancer Patients with Dementia: Bereaved Family Members' Perspective.

Objective: The prevalence of dementia and cancer has increased in recent years. The presence of dementia complicates the care of terminal cancer patients and affects their family caregivers. However, palliative care research seldom focuses on the family caregivers of patients with terminal cancer and dementia. This study aimed to evaluate the degree and factors of caregiver burden in cancer patients with dementia who died in hospice palliative care units. Methods: A nationwide cross-sectional survey was conducted among bereaved family members of patients with cancer who died in palliative care units. An anonymous self-report questionnaire was sent to bereaved family members, and they were asked if they were aware of the diagnosis of dementia. The short version of the Caregiver Consequence Inventory was used to measure caregiver burden. Results: The analysis included 670 bereaved family members. Of these, 83 (12.4%) were bereaved family members of terminal cancer patients with dementia. The caregiver burden was statistically significantly higher (3.61 ± 1.58 vs 3.22 ± 1.47; p < 0.036) among family caregivers of terminal cancer patients with dementia. Longer anti-cancer treatment duration (odd ratio, 4.63), poor mental and physical health of family caregivers (odds ratio, 2.05 and 2.20, respectively), pain (odd ratio, 1.72), and dyspnea (odds ratio, 1.67) were contributing factors for caregiver burden. Conclusions: Family caregivers of terminal cancer patients with dementia require care that considers the characteristics of the two serious diseases. Considering the goal of anti-cancer treatment and symptom relief may be a useful strategy for reducing caregiver burden.

Current situation and support need for non-cancer patients' admission to inpatient hospices/palliative care units in Japan: a nationwide multicenter survey.

BACKGROUND: Specialist palliative care for non-cancer patients is important; however, access to inpatient hospices/palliative care units (PCUs) for non-cancer patients in Japan may be insufficient. We aimed to explore the current situation, the support needs to accept admission of non-cancer patients, and the willingness to accept admission of non-cancer patients to inpatient hospices/PCUs in Japan. METHODS: We conducted a nationwide multicenter anonymous questionnaire survey to inpatient hospices/PCUs in Japan in January 2022. We recruited potential participants from 381 PCUs belonging to Hospice Palliative Care Japan (HPCJ). RESULTS: A total of 264 of 381 facilities responded to the survey (response rate: 69.3%) and 75.0% replied that it was "very necessary" or "necessary" to provide health care coverage of hospitalization costs of non-cancer patients to the same level as cancer patients in inpatient hospices/PCUs. Furthermore, 59.1% replied that they would be "willing" or "somewhat willing" to admit non-cancer patients under the assumption that hospitalization costs covered by health care insurance. In addition, 15.2% of facilities had admitted non-cancer patients. A need for clarification of admission criteria for chronic heart failure (CHF) (rs =-0.166, P=0.008), chronic respiratory failure (rs =-0.146, P=0.019), chronic hepatic failure (rs =-0.161, P=0.010), and chronic renal failure (CRF) with dialysis (rs =-0.151, P=0.017); the need for an education and training system for chronic respiratory failure (rs =-0.132, P=0.034); and advice from experts in the hospital for chronic respiratory failure (rs =-0.156, P=0.013) were significantly negatively associated with willingness to accept the admission of non-cancer patients. CONCLUSIONS: A total of 15.2% of facilities had admitted non-cancer patients under the current situation, and 59.1% of the facilities were willing to accept the admission of non-cancer patients under the assumption that hospitalization costs would be covered by health care insurance to the same level as cancer patients. Our study highlighted the importance of the establishment of a health insurance system in which appropriate palliative care is available regardless of disease, the definition of admission criteria, and the establishment of a systematic educational program.

The Impact of Stressful Life Events after Bereavement: A Nationwide Cross-sectional Survey.

CONTEXT: Bereaved family members sometimes experience distress due to stressful life events. However, the effects of this distress on depression and grief remain unclear. OBJECTIVES: To clarify the degree of distress due to postbereavement stressful life events, its associated factors, especially social isolation, and its effects on major depressive disorder (MDD) and complicated grief (CG) risks among bereaved family members of patients with cancer. METHODS: This cross-sectional questionnaire survey was conducted in 2018 as part of the J-HOPE4 study. We recruited 1740 bereaved family members of patients with cancer who died from July to August of 2018. We assessed distress due to postbereavement stressful life events with the Bereavement Secondary Stressor Scale, social isolation with the Lubben Social Network Scale Short-Form, and the MDD and CG risk with the Patient Health Questionnaire-9 and Brief Grief Questionnaire, respectively. RESULTS: Among the 913 (52.5%) respondents, 88%, 57%, 46%, 28%, and 19% experienced distress due to incidental tasks, daily life difficulties, financial problems, problems with other people, and deterioration of family relationships, respectively. More distress was associated with higher risks of MDD (odds ratio [OR] = 2.5, P < 0.01) and CG (OR = 2.5, P < 0.01). Social isolation and specific backgrounds were associated with more distress in response to stressful life events. CONCLUSION: Most family members experienced distress due to stressful life events, which were risk factors for MDD and CG. Assessing risk factors for maladaptation to post-bereavement life changes and enhancing readiness to adapt to them is important.

Comparative study of clinicians' and family members' perceptions of patients' end-of-life experiences.

OBJECTIVE: End-of-life experiences (ELEs), such as deathbed visions (DBVs), have been reported worldwide. However, ELEs have rarely been discussed in clinical practice, possibly because of the different perceptions of ELEs among clinicians and families. Therefore, this study aimed to investigate the differences in perception regarding ELEs, especially DBVs, between clinicians and families. METHODS: We conducted a multicentre, prospective and observational study with patients with cancer. After the patients' death, clinicians recorded their perceptions of patients' ELEs during the palliative care unit admission, and bereaved families responded to a questionnaire about ELEs. The primary outcome was the frequency and concordance of DBVs from the perspective of bereaved family members and clinicians. The second outcome was each group's frequency of terminal lucidity and terminal coincidence. RESULTS: The study included 443 patients. DBVs were reported more frequently by family members than clinicians (14.0% vs 2.7%, p<0.001). Among family members, terminal lucidity and terminal coincidence were observed at 7% and 7.9%, respectively, while only one case each was reported by clinicians. CONCLUSIONS: Clinicians and family members may perceive ELEs differently. Enabling patients and their families to talk about ELEs would assist in optimising grief care.

Factors related to suicidal ideation among bereaved family members of patients with cancer: Results from a nationwide bereavement survey in Japan.

BACKGROUND: Bereaved family members are known to have a higher risk of suicide, although relevant research is lacking. We aimed to clarify the percentage of bereaved family members of patients with cancer who experience suicidal ideation and the associated factors. METHODS: We conducted a secondary analysis of two cross-sectional nationwide bereavement surveys in Japan, analyzing data from a total of 17,237 bereaved family members of patients with cancer. The Patient Health Questionnaire 8 (PHQ-8) and Item 9 of the PHQ-9 were used to assess depression (PHQ-8 score ≥10) and suicidal ideation, respectively. We assessed items such as socio-demographic data, complicated grief (CG), preparedness for bereavement, and perceived social support. Logistic regression analysis was used to reveal factors related to suicidal ideation. RESULTS: Overall, 11 % of subjects reported some amount of suicidal ideation in the previous two weeks, with a suicidal ideation rate as high as 42 % among those with a higher risk of depression. Significant associations (all p < 0.0001) were found between suicidal ideation and the family member's depressive state (OR: 10.01), poor physical health status during caregiving (OR: 1.24), poor psychological health status during caregiving (OR: 1.38) pre-existing mental illness (OR: 1.38), insufficient preparedness for bereavement (OR: 0.59), and poor perceived social support (OR: 1.42). LIMITATIONS: The respondents were limited to family members of patients with cancer in Japan, and the study involved cross-sectional self-reported data. CONCLUSIONS: Clinicians should identify bereaved family members at a high risk of suicide by carefully assessing these risk factors identified in the present study.

Bathing in Terminal Care of Cancer Patients and Its Relation to Perceptions of a "Good Death": A Nationwide Bereavement Survey in Japan.

Background: Bathing in a tub is integral to Japanese culture. It improves palliative care patients' symptoms and may improve quality of life. Objectives: This study aimed to determine the prevalence and impressions of bathing for terminally ill cancer patients and its relations to the evaluations of perceived end-of-life care and achievement of a good death. Design: This was a cross-sectional, anonymous, self-report questionnaire survey. Setting/Subjects: The questionnaire for this study was sent to bereaved family members who had lost loved ones in 14 general hospitals and 187 palliative care wards in Japan. Measurements: The bereaved family members of the patients who had actually bathed were asked about their impression of bathing. The short version of the Good Death Inventory (GDI) and the Care Evaluation Scale were used to evaluate "achievement of a good death." In total, 1819 surveys were sent between July and September 2018 to bereaved family members of patients who had died between February 2014 and January 2018 in 14 general hospitals and 187 palliative care wards in Japan. Overall 885 questionnaires (valid response rate 48%) returned by bereaved family members were analyzed. Results: Overall, 85% of bereaved family members of patients who bathed evaluated the experience positively, 86% reported that the patient's face seemed to become calm after the bath, and 28% of bereaved family members whose loved one had not bathed reported regretting it. The total GDI score for the bereaved family's desired death was 82.7 ± 13.0 for the bathing group and 75.4 ± 15.7 for the no bathing group, a significant difference (effect size = 0.52, p < 0.01). Conclusions: Bathing before death was evaluated positively and was associated with the achievement of a good death.

Experience of the temporary discharge from the inpatient palliative care unit: A nationwide post-bereavement survey for end-of-life cancer patients.

Objective: Inpatient palliative care units (PCUs) have two roles: place of death and symptom control. In case of symptom control, most patients whose distressing symptoms could be relieved would be temporarily discharged back home. However, the experience of the patient and their family during temporary discharge is unclear. Methods: This study is a part of the Japan HOspice and Palliative Care Evaluation Study 3, a nationwide cross-sectional post-bereavement survey. We sent questionnaires to bereaved relatives of cancer patients who died in PCUs in 2018. Results: Among 968 questionnaires sent, 571 questionnaires were analyzed (59%). Sixteen percent of patients experienced temporary discharge from PCUs. Seventy-two percent of bereaved family members reported that patients said "I am happy to be discharged home." Overall, 22%-37% of participants reported improvement in the patient's condition after discharge. The caregiver's recognition of better patient's quality of life at home and the doctor's assurance of re-hospitalization, if necessary, were significantly associated with positive experience. Conclusions: Bereaved family members recognized temporal discharge as positive experiences for patients and families. Appropriate home palliative care and discharge planning would contribute to positive experience after discharge.

Comparison of the quality of death between primary malignant brain tumor patients and other cancer patients: results from a nationwide bereavement survey in Japan.

PURPOSE: No studies have investigated the association between malignant brain tumor and the quality of dying, which is an important outcome in end-of-life care. This study aimed to clarify whether the quality of dying and related factors in patients with malignant brain tumor differ from those in patients with other malignant diseases. METHODS: This was a secondary analysis of data collected by two nationwide, multicenter, bereavement surveys of palliative care units in Japan. This analysis included 14,171 bereaved family members (160 patients with malignant brain tumors). The quality of dying was examined using the good death inventory (GDI), a validated tool widely used in palliative care settings. RESULTS: Patients with malignant brain tumors were younger (p < 0.0001) and had a longer palliative care unit stay during their end-of-life (p < 0.0001) than others. The total GDI score was significantly lower in patients with malignant brain tumors than others (p < 0.0001). Five GDI items were significantly lower in the malignant brain tumor group than other cancer group: "Being able to stay in one's favorite place" (p = 0.03); "Trusting the physician" (p = 0.003); "Not being a burden to others" (p = 0.01); "Being independent in daily activities" (p = 0.01); and "Feeling that one's life is worth living" (p = 0.001). CONCLUSION: This study showed that the quality of dying of patients with malignant brain tumors was lower compared to other cancers, suggesting the need to review care for patients with malignant brain tumors based on their characteristics.

The impact of death rattle on bereaved families: not the sound itself, but the resonance with their feelings.

BACKGROUND: This study aimed to explore (i) the consistency between physician-rated and bereaved family-perceived intensity of death rattle, (ii) the relationship between intensity of death rattle and the bereaved family's distress and (iii) the bereaved family's experience and feelings related to suctioning for death rattle. METHODS: We used matched data for deceased patients from a prospective cohort study of cancer patients admitted to a palliative care unit, and their bereaved families from a nationwide questionnaire survey in Japan. The intensity of death rattle using Back's score was evaluated prospectively by physicians and retrospectively by bereaved families. RESULTS: In total, 1122 bereaved families answered (response rate: 66.7%). Of these, 297 reported the development of death rattle. The maximum intensity of death rattle evaluated by physicians and perceived by bereaved families was poorly correlated (Spearman correlation coefficient 0.188, P = 0.082). The optimal cut-off point of Back's score for detecting high-level distress was 1/2, with a low accuracy of prediction (area under the curve 0.62). More than 70% of bereaved families indicated suctioning reduced the intensity of death rattle, made patients comfortable and themselves relieved, whereas a similar proportion felt patients were in distress during suctioning. Families who felt suctioning was gently performed and discussed well whether to do suctioning with health care providers felt less needs for improvement. CONCLUSIONS: Bereaved family-perceived intensity of death rattle did not correlate to physician-evaluated intensity, and the intensity of death rattle itself seemed to poorly correlate to family distress. Gently performed suctioning based on sufficient discussion with families can help reduce family-perceived patient discomfort.

Nationwide survey on family caregiver-perceived experiences of patients with cancer of unknown primary site.

PURPOSE: Cancer of unknown primary site (CUP) is an aggressive disease with poor prognosis. As research on the experiences of CUP patients and their families is scarce, this study aimed to compare the family caregiver-perceived burden of CUP with that of common cancers (lung, colon, and stomach cancers). The association between family caregiver-perceived burden and CUP patients' quality of life (QOL) at end-of-life and family depression, respectively, was also explored. METHODS: This was a pre-planned secondary analysis of nationwide cross-sectional survey data from the bereaved family caregivers of patients with cancer who died at 286 institutions. The major measurements were the eight-item family caregiver-perceived Burden scale (comprising specialist access, uncertainty, and prolonged diagnosis), Good Death Inventory, and Patient Health Questionnaire 9. RESULTS: Of 27,591 survey responses, we analyzed 97 and 717 responses from family caregivers of patients with CUP and common cancer, respectively. The families of CUP patients scored significantly higher on all three burden subscales than those of common cancer patients (effect sizes: specialist access subscale, 0.3; uncertainty subscale, 0.66; and prolonged diagnosis subscale, 0.69; adjusted P < 0.01). Greater family burden was significantly associated with lower patient QOL and higher family depression. Burden was significantly associated with being a spouse, second opinion consultation, and diagnosis period of > 1 month. CONCLUSION: The family caregivers of CUP patients experience poor specialist access, greater uncertainty, and a prolonged diagnosis. They should be cared for from the initial stages to establish access to specialists, obtain an early diagnosis, and reduce uncertainty.

Association between experiences of advanced cancer patients at the end of life and depression in their bereaved caregivers.

OBJECTIVE: Research on the association between circumstances of death in advanced cancer patients and depression in their bereaved caregivers is limited. METHODS: A longitudinal study was performed on patients admitted to 21 inpatient hospices/palliative care units (PCUs) in Japan. Patient symptoms were assessed at admission and in the last 3 days of life. Data on distressing events (unexpected death, bleeding) and received treatments (morphine prescriptions, continuous deep sedation, cardiopulmonary resuscitation) were also obtained. Bereaved caregiver depression was assessed 6 months or more after patient death via mail survey using the Patient Health Questionnaire-9 (PHQ-9). A multivariable logistic regression analysis was used to explore variables predicting bereaved caregiver depression. RESULTS: Of 1324 deceased patient-bereaved caregiver dyads, data were finally analyzed for 711 dyads. The proportion of probable depression (PHQ-9 scores ≥10) in bereaved caregivers was 13.6% (91/671; 95% confidence interval: 11.0-16.2). The multivariable logistic regression analysis showed that patient hyperactive delirium at PCU admission was significantly associated with the development of bereaved caregiver depression (odds ratio: 2.2, 95% CI: 1.2-3.8). Bereaved caregiver perceived low social support (OR: 4.7, 95% CI: 2.2-10.0) and low preparedness for death (OR: 4.5, 95% CI: 2.6-7.8) were also significantly associated with the development of depression. Other patient and bereaved caregiver variables had no association with depression. CONCLUSIONS: Hyperactive delirium in terminally ill cancer patients was associated with bereaved caregiver depression. The development of effective strategies to reduce delirium-related agitation and to provide educational interventions for caregivers may be needed.

Private or shared room? A nationwide questionnaire survey on bereaved family members' perceptions of where patients spend their last days.

BACKGROUND: Where patients receive end-of-life care influences their quality of life. OBJECTIVES: To clarify the effects of staying in a private or shared room in inpatient hospices. DESIGN: A part of a Japanese multicentre survey to evaluate the quality of end-of-life care. SETTING/PARTICIPANTS: 779 bereaved families whose relatives who died from cancer in inpatient hospices. MEASUREMENTS: The primary outcome was family-perceived need for improvement in environment-related professional care. Secondary end-points included: family satisfaction, environment-related family perception, and quality of death and dying (Good Death Inventory: GDI). RESULTS: 574 responded (73.7%). 300 patients were in a private room from admission to discharge, 47 were in a shared room less than 50% of the time, and the remaining 85 were in a shared room 50% or more. There were significant differences in the need for improvement in shared (vs private) rooms, and in favour of private rooms for: 'privacy was protected', 'easy for visitors to visit', 'could discuss sensitive issues with medical staff without concern', and 'could visit at night.', as well as 'living in calm circumstances' and 'spending enough time with family' of the GDI. Contrarily, significant differences were found in favour of shared rooms for: 'the patient could interact with other patients'. There was no significant difference in family satisfaction and total score of GDI. CONCLUSION: There are the advantages and disadvantages of spending one's final days in a private or shared room, and adjusting rooms according to patients and their families' values is necessary.

Influence of financial burden on withdrawal or change of cancer treatment in Japan: results of a bereavement survey.

PURPOSE: This study aimed to examine the effect of financial burden of cancer treatment from diagnosis to end-of-life on treatment withdrawal or change in Japan. METHODS: This study was part of a nationwide survey of bereaved family members of cancer patients in Japan (J-HOPE2016 study). Questions regarding withdrawal or change of cancer treatment (stratified according to whether the treatment was recommended by physicians or based on the patients' request), financial difficulties in coping with cancer treatment expenses, and the participants' socioeconomic background were asked. Descriptive analyses were performed, and logistic regression was used to examine the factors related to withdrawal or change of cancer treatment. RESULTS: In total, 510 (60%) questionnaires were returned. Approximately 7.5% of participants reported withdrawal or change of cancer treatment for financial reasons. Financial difficulties in coping with cancer treatment expenses such as using up all or a portion of one's savings (OR = 2.14, 95% CI = 1.14-4.04, p = 0.018/ OR = 3.45, 95% CI = 1.52-7.81, p = 0.003) and subjective financial burden (OR = 2.54, 95% CI = 1.25-5.14, p = 0.010/OR = 3.89, 95% CI = 1.68-9.00, p = 0.002) were significantly related to withdrawal or change of cancer treatment (recommended by physicians/based on patient request). CONCLUSION: Fewer participants reported withdrawal or change of cancer treatment than in previous studies, which might reflect the characteristics of the Japanese healthcare system. However, there are patients in Japan who withdraw or change cancer treatment for financial reasons. Medical staff should consider financial toxicity as a serious side effect and assist patients in their decision-making regarding treatment while taking into account their socioeconomic backgrounds.

Association between temporary discharge from the inpatient palliative care unit and achievement of good death in end-of-life cancer patients: A nationwide survey of bereaved family members.

AIM: To explore the unclear association between temporary discharge home from the palliative care unit and achievement of good death, in the background of increases in discharge from the palliative care unit. Association between experiences and circumstances of patient and family and duration of temporary discharge was also examined. METHODS: This study was a secondary analysis of data from a nationwide post-bereavement survey. RESULTS: Among 571 patients, 16% experienced temporary discharge home from the palliative care unit. The total good death inventory score (p < .05) and sum of 10 core attributes (p < .05) were significantly higher in the temporarily discharged and stayed home ≥2 weeks group. Among all attributes, "Independent in daily activities" (p < .001) was significantly better in the temporarily discharged and stayed home ≥2 weeks group. Regarding the experience and circumstance of patient and family, improvement of patient's appetite (p < .05), and sleep (p < .05) and peacefulness (p < .05) of family caregivers, compared to the patient being hospitalized, were associated with longer stay at home after discharge. CONCLUSIONS: Patient's achievement of good death was better in the temporarily discharged and stayed home longer group, but this seemed to be affected by high levels of independence of the patient. Temporary discharge from the palliative care unit and staying home longer was associated with improvement of appetite of patients and better sleep and mental health status of family caregivers. Discharging home from palliative care unit is worth being considered even if it is temporary.

Family experience of palliative sedation therapy: proportional vs. continuous deep sedation.

PURPOSE: Some patients experience intense symptoms refractory to intensive palliative care, and palliative sedation is sometimes used. Palliative sedation may be classified into proportional and continuous deep sedation (CDS). The primary aim of this study was to compare family experience between families of patients who received proportional or CDS. METHODS: A multicenter questionnaire survey was conducted involving bereaved families of cancer patients who received proportional or CDS based on a sedation protocol. Overall evaluation of sedation (satisfaction, family-perceived distress, appropriateness of timing, and patient distress) and 13-item family concerns, good death, satisfaction with care, depression, quality of care, unfinished business, and balance between symptom relief and maintaining communication were measured. RESULTS: Among the 2120 patients who died, 222 patients received a continuous infusion of midazolam. A sedation protocol was used in 147 patients, and questionnaires were sent to 124 families. A total of 78 responses were finally returned (proportional, 58 vs. CDS, 20). There were no significant differences in the overall evaluation, family concerns, total score of good death, satisfaction, depression, or balance between symptom relief and maintaining communication. On the other hand, some quality of care items, i.e., relationship with medical staff (P < 0.01), physical care by nurses (P = 0.04), and coordination and consistency (P = 0.04), were significantly better in the CDS group than in the proportional sedation group. Family-reported unfinished business was also better in the CDS group, with marginal significance. CONCLUSIONS: Family experience of CDS was not less favorable than proportional sedation, and actually rated more favorably for some elements of quality of care and unfinished business.