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Abstract Background and objectives The growing number of terminally ill patients has underscored the importance of equipping healthcare workers with adequate palliative care knowledge and self-efficacy. This study aimed to compare the palliative care knowledge and self-efficacy of nurses in intensive care units (ICUs) with those in general wards at hospitals affiliated with Kerman University of Medical Sciences in 2023. Methods This descriptive-comparative cross-sectional study involved nurses from intensive care units and general wards of three hospitals affiliated with Kerman University of Medical Sciences, for a total sample size of 300 nurses (150 in each group). The samples were selected using convenience sampling. The data collection tools included a demographic information questionnaire, the Palliative Care Knowledge Test (PCKT), and the Palliative Care Self-Efficacy Scale (PCSES). Convenience Sampling method was used. The data were analyzed using SPSS 23. Descriptive statistics (frequency, percentage, mean, and standard deviation) and inferential statistics (independent t-test, Mann-Whitney U test and multivariate stepwise regression) were employed. Statistical significance was determined by a p-value of ≤ 0.05. Findings The mean score for palliative care knowledge was 10.59 (± 2.10) for nurses in intensive care units and 10.43 (± 2.33) for nurses in general wards, with no significant difference between the two groups (P = 0.53). Similarly, the mean score for palliative care self-efficacy was 28.01 (± 10.29) for nurses in intensive care units and 27.98 (± 10.33) for nurses in general wards, with no significant difference between the groups (P = 0.98). Variables such as the history of caring for dying patients in the hospital (P = 0.004) or at home (P = 0.01), workplace (P = 0.002), and work experience (P = 0.03) were identified as the main predictors of palliative care knowledge and palliative care self-efficacy was affected by age (P

Abstract Background Outcome measures during acute cardiovascular disease (CVD) phases, such as quality of death, have not been thoroughly evaluated. This is the first study that compared the family members’ perceptions of quality of death in deceased CVD patients and in deceased cancer patients using a bereaved family survey. Methods Retrospectively sent questionnaire to consecutive family members of deceased patients with CVD from ten tertiary hospitals from October 2017 to August 2018. We used the short version of the Good Death Inventory (GDI) and assessed overall care satisfaction. Referencing the GDI, the quality of death was compared between CVD patients admitted to a non-palliative care unit (non-PCU) and cancer patients in palliative care units (PCU) and non-PCUs in the Japan Hospice and Palliative Care Evaluation Study (J-HOPE Study). Additionally, in the adjusted analysis, multivariable linear regression was performed for total GDI score adjusted by the patient and participant characteristics to estimate the difference between CVD and other patients. Results Of the 243 bereaved family responses in agreement (response rate: 58.7%) for CVD patients, deceased patients comprised 133 (54.7%) men who were 80.2 ± 12.2 years old on admission. The GDI score among CVD patients (75.0 ± 15.7) was lower (worse) than that of cancer patients in the PCUs (80.2 ± 14.3), but higher than in non-PCUs (74.4 ± 15.2). After adjustment, the total GDI score for CVD patients was 7.10 points lower [95% CI: 5.22–8.97] than for cancer patients in PCUs and showed no significant differences compared with those in non-PCUs (estimates, 1.62; 95% CI [-0.46 to 5.22]). Conclusions The quality of death perceived by bereaved family members among deceased acute CVD patients did not differ significantly from that of deceased cancer patients in general wards, however, was significantly lower than that of deceased cancer patients admitted in PCUs.

Abstract Background Patient-Reported Outcomes (PROs) are recommended for use in clinical oncology. However, they are not routinely used in professional palliative care practices in Japan. The reasons include both patient and healthcare provider factors and the implementation of PROs. This study aimed to develop and validate clinical implementation methods for PROs in Japanese palliative care units. Methods The Consolidated Framework for Implementation Research (CFIR) was conducted with four palliative care units in Japan. The study was conducted in six steps: unit assessment, development and implementation of a PRO implementation plan, PRO post-implementation survey and analysis of its utilization, a review of the PRO implementation process, creation of a PRO implementation method in a palliative care unit, and use and verification of the implementation method. Steps 1–5 were the development phase, and step 6 was the verification phase. Results Interviews were conducted with healthcare providers prior to PRO implementation. Intervention characteristics, patient needs in the palliative care unit, and factors related to the organization were identified as barriers. The implementation plan was developed, and the core members were selected. The implementation procedures were created in the above mentioned steps. PROs were used in the palliative care units. The same was true in the validation phase. Conclusions This study guided PROs in specialized palliative care unit in a clinical setting. The method was developed and validated for the implementation of PROs in the palliative care unit. In the PRO implementation process, it was important to assess the unit, address the barriers to implementation, and reduce the burden on healthcare providers. Furthermore, healthcare providers had to be supported by the champion, a person responsible for the implementation of PROs in the palliative care unit.

Abstract Background Patients in intensive care units (ICUs) often require quality palliative care for relief from various types of suffering. To achieve quality palliative care, specific goals need to be identified, measured, and reported. The present study aimed to develop quality indicators (QIs) for palliative care in ICUs, based on a systematic review and modified Delphi method, and test their feasibility by reviewing electronic medical record (EMR) data. Methods The current study was performed in two phases: the development of QIs using the modified Delphi method, and pilot-testing the quality of palliative care in ICUs based on EMR review. The pilot test included 262 patients admitted to the general or emergency ICU at a university hospital from January 1, 2019, to June 30, 2019. Results A 28-item QI set for palliative care in ICUs was developed based on the consensus of 16 experts. The Delphi process resulted in low measurability ratings for two items: "Assessment of the patient's psychological distress" and "Assessment of the patient's spiritual and cultural practices." However, these items were determined to be important for quality care from the perspective of holistic assessment of distress and were adopted in the final version of the QI set. While the pilot test results indicated the feasibility of the developed QIs, they suggested that the frequency of care performance varied, and certain aspects of palliative care in ICUs needed to be improved, namely (1) regular pain assessment, (2) identification of the patient's advance directive and advance care planning for treatment, (3) conducting an interdisciplinary family conference on palliative care, and (4) assessment of psychological distress of family members. Conclusions The QI set, developed using the modified Delphi method and tested using EMR data, provided a tool for assessing the quality of palliative care in ICUs. In the two ICUs considered in this study, aspects of the palliative care process with a low performance frequency were identified, and further national surveys were recommended. It is necessary to conduct ongoing surveys at more facilities to improve the quality of palliative care in ICUs.

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?

Objective: To develop the Japanese version of the Patient Satisfaction Questionnaire (PSQ-J) and examine its validity and reliability. Methods: A cross-sectional, web-based survey was conducted among cancer patients in Japan. The PSQ-J was developed following the forward-backward translation method, using a numerical rating scale. Data on patient characteristics and psychometric scales, like the PSQ-J, willingness to recommend an oncologist to others, trust in the healthcare system, uncertainty, and the Physician Compassion Questionnaire were collected. Validity was examined using exploratory and confirmatory factor analyses and by calculating the correlations between the total PSQ-J score and the criterion variables. Reliability was confirmed by Cronbach's alpha and test-retest score correlations at a two-week interval. Results: The first and second surveys were conducted on 309 and 107 patients, respectively. One-dimensionality and model fit were verified using factor analyses. The PSQ-J was significantly associated with other comparable scales. Cronbach's alpha was 0.962; the correlation between the PSQ-J test-retest scores was 0.835 (p

Abstract Background Discrepancies in symptom assessment between providers and patients are reported in cancer care, and the use of patient-reported outcome measures (PROMs) has been recommended for patients receiving palliative care. However, the status of the routine use of PROMs in palliative care in Japan is presently unclear. Therefore, this study aimed to clarify this complex question. To this end, we administered a questionnaire survey either online or via telephone interviews (questionnaire: sent to 427 designated cancer hospitals, 423 palliative care units [PCUs], and 197 home hospices; interviews: conducted at 13 designated cancer hospitals, nine PCUs, and two home hospices). Results Questionnaires were returned from 458 institutions (44% response rate). We found that 35 palliative care teams (PCTs, 15%), 66 outpatient palliative care services (29%), 24 PCUs (11%) and one (5%) home hospice routinely used PROMs. The most frequently implemented instrument was the Comprehensive Care Needs Survey questionnaire. Moreover, 99 institutions (92%) that routinely used PROMs responded these instruments as useful in relieving patients’ symptoms; and moreover, the response rate in regard to usefulness in symptom management was higher than that of institutions that did not routinely use PROMs (p = 0.002); > 50% of the institutions that routinely used PROMs stated that use of these instruments was influenced by disease progression and patients’ cognitive function. Moreover, 24 institutions agreed to be interviewed, and interviews demonstrated the benefits of and the barriers to the implementation of PROMs. Effective methods used in the implementation of PROMs were introduced as efforts to reduce the burden placed on patients and to promote healthcare providers’ education in the use of PROMs. Conclusions This survey quantified the status of the routine use of PROMs within specialized palliative care in Japan, revealed barriers to wider PROM use, and identified needed innovations. Only 108 institutions (24%) routinely used PROMs within specialized palliative care. Based on the results of the study, it is necessary to carefully consider the usefulness of PROs in clinical palliative care, perform careful selection of PROMs according to the patient's condition, and evaluate how specifically to introduce and operate PROMs.

Abstract Background Eating‐related distress (ERD) is one type of psychosocial distress among advanced cancer patients and family caregivers. Its alleviation is a key issue in palliative care; however, there is no validated tool for measuring ERD. Methods The purpose of this study was to validate tools for evaluating ERD among patients and family caregivers. The study consisted of a development and validation/retest phase. In the development phase, we made preliminary questionnaires for patients and family caregivers. After face validity and content validity, we performed an exploratory factor analysis and discussed the final adoption of items. In the validation/retest phase, we examined factor validity with an exploratory factor analysis. We calculated Pearson's correlation coefficients between the questionnaire for patients, the Functional Assessment of Anorexia/Cachexia Therapy Anorexia Cachexia Subscale (FAACT ACS) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire‐Cachexia 24 (EORTC QLQ‐CAX24) and Pearson's correlation coefficients between the questionnaire for family caregivers and the Caregiver Quality of Life Index‐Cancer (CQOLC) for concurrent validity. We calculated Cronbach's alpha coefficients (Cronbach's alpha) and intraclass correlation coefficients (ICCs) for internal consistency and test–retest reliability. We performed the Mann–Whitney U test between the questionnaires and cancer cachexia based on criteria from the international consensus for known‐group validity. Results In the development phase, 162 pairs of patients and family caregivers were asked to participate, and 144 patients and 106 family caregivers responded. In the validation/retest phase, 333 pairs of patients and family caregivers were asked to participate, and 234 patients and 152 family caregivers responded. Overall, 183 patients and 112 family caregivers did the retest. Seven conceptual groups were extracted for the ERD among patients and family caregivers, respectively. Patient factors 1–7 correlated with FAACT ACS (r = −0.63, −0.43, −0.55, −0.40, −0.38, −0.54, −0.38, respectively) and EORTC QLQ‐CAX24 (r = 0.58, 0.40, 0.60, 0.49, 0.38, 0.59, 0.42, respectively). Family factors 1–7 correlated with CQOLC (r = −0.34, −0.30, −0.37, −0.37, −0.46, −0.42, −0.40, respectively). The values of Cronbach's alpha and ICC of each factor and all factors of patients ranged from 0.84 to 0.96 and 0.67 to 0.83, respectively. Those of each factor and all factors of family caregivers ranged from 0.84 to 0.96 and 0.63 to 0.84, respectively. The cachexia group of patients had significantly higher scores than the non‐cachexia group for each factor and all factors. Conclusions Newly developed tools for measuring ERD experienced by advanced cancer patients and family caregivers have been validated.

Abstract Background Acute exacerbation (AE) is a major cause of death in patients with idiopathic pulmonary fibrosis (IPF). AE-IPF patients require optimal palliative care; however, the real-world clinical situations are poorly understood. We aimed to survey the palliative care received by AE-IPF patients, especially with respect to opioid use for dyspnea and the end-of-life discussions (EOLd). Methods Self-administered questionnaires were dispatched to 3423 of the certified pulmonary physicians in Japan. They were asked to report a care report form of one patient each with AE-IPF who died very recently about opioid use for dyspnea and EOLd. We further explored the factors associated with the early use of opioids for dyspnea. Results Among the 3423 physicians, 1226 (35.8%) returned the questionnaire with the report forms of 539 AE-IPF patients. Of 539 AE-IPF patients, 361 (67.0%) received opioids for dyspnea. Of the 361 patients, 72 (20.0%) received opioids during the initial treatment with an intention of recovery (early use), while 289 (80.0%) did when the recovery was deemed impossible. EOLd was held before the onset of AE in 124 patients (23.0%); however, the majority of patients had EOLd after the admission for AE-IPF. EOLd before the onset of AE was significantly associated with the early use of opioids. Conclusion In terminally ill AE-IPF patients, opioids are usually administered when the recovery is deemed impossible, and EOLd are rarely held before the onset of AE. Further studies are warranted on the efficacy of opioids for dyspnea and the appropriate timing of EOLd.

Abstract Background Cancer pain may be refractory to standard pharmacological treatment. Interventional procedures are important for quality of analgesia. The aim of the present study was to clarify the availability of four interventional procedures (celiac plexus neurolysis/splanchnic nerve neurolysis, phenol saddle block, epidural analgesia, and intrathecal analgesia), the number of procedures performed by specialists, and their associated factors. In addition, we aimed to establish how familiar home hospice physicians and oncologists are with the different interventional procedures available to manage cancer pain. Methods A cross-sectional survey using a self-administered questionnaire was conducted. Subjects were certified pain specialists, interventional radiologists, home hospice physicians, and clinical oncologists. Results The numbers of valid responses/mails were 545/1,112 for pain specialists, 554/1,087 for interventional radiology specialists, 144/308 for home hospice physicians, and 412/800 for oncologists. Among pain specialists, depending on intervention, 40.9-75.2% indicated that they perform each procedure by themselves, and 47.5-79.8% had not performed any of the procedures in the past 3 years. Pain specialists had performed the four procedures 4,591 times in the past 3 years. Among interventional radiology specialists, 18.1% indicated that they conduct celiac plexus neurolysis/splanchnic nerve neurolysis by themselves. Interventional radiology specialists had performed celiac plexus neurolysis/splanchnic nerve neurolysis 202 times in the past 3 years. Multivariate analysis revealed that the number of patients seen for cancer pain and the perceived difficulty in gaining experience correlated with the implementation of procedures among pain specialists. Among home hospice physicians and oncologists, depending on intervention, 3.5-27.1% responded that they were unfamiliar with each procedure. Conclusions Although pain specialists responded that the implementation of each intervention was possible, the actual number of the interventions used was limited. As interventional procedures are well known, it is important to take measures to ensure that pain specialists and interventional radiology physicians are sufficiently utilized to manage refractory cancer pain.

Background: The beliefs and perceptions of parenteral nutrition and hydration (PNH) by advanced cancer patients have not been elucidated. Objectives: To clarify their beliefs and perceptions and to explore the relationships between their beliefs and perceptions and cachexia stages. Design/setting/subjects: A questionnaire survey of advanced cancer patients receiving palliative care across Japan. Measurements: We asked patients to answer 15 items regarding their beliefs and perceptions of PNH. Frequencies were calculated for the patient characteristics and survey parameters. Comparisons were performed using the Mann?Whitney U test. We conducted a factor analysis and a multiple logistic regression analysis to identify the independent factors affecting cancer cachexia stages. Results: Among 495 patients, 378 responded. Due to missing data, 357 remained in the frequency distribution analysis, and 344 were classified into the noncachexia group (n?=?174) and cachexia group (n?=?170). Approximately 60% thought that PNH were beneficial. Approximately 70% considered PNH a standard medical practice. Approximately 70% did not feel that they received a sufficient explanation. There were no significant differences in any items between the two groups. We extracted four conceptual groups. The concept of ?Belief that PNH are harmful? was identified as an independent factor [odds ratio 2.57 (95% confidence intervals 1.10?6.01), p?=?0.030]. Conclusion: More than half of the patients thought that PNH were beneficial and standard medical practices with or without cancer cachexia. The negative perception of PNH decreased in patients with cancer cachexia.

Abstract Background The relationships between cachexia stages and the Functional Assessment of Anorexia/Cachexia Therapy Anorexia Cachexia Subscale (FAACT ACS) 12‐item, 5‐item anorexia symptoms, and 4‐item anorexia concerns have not been investigated in Asian patients with advanced cancer. Methods This is a multicentre questionnaire survey conducted in palliative and supportive care settings across Japan. Consecutive patients were enrolled. Patient characteristics and anthropometric measurements were obtained. Dietary intakes and nutrition impact symptoms were also assessed. Patients evaluated their quality of life (QOL) using FAACT ACS. Subjects were divided into two groups, that is, pre‐cachexia (non‐cachexia) and cachexia and refractory cachexia (cachexia), based on cancer cachexia criteria from the international consensus. Comparisons were performed using the Mann–Whitney U test or chi‐squared test. To evaluate the relationship between cachexia stages and FAACT ACS 12‐item, 5‐item anorexia symptoms, and 4‐item anorexia concerns, adjusted odd ratios (ORs) and 95% confidence intervals (CIs) were calculated in the logistic models. Results Among 495 patients, 378 (76.4%) responded. Due to missing data, 344 patients were classified into the non‐cachexia group (n = 174) and cachexia group (n = 170), and 318 remained in the analysis of FAACT ACS. The cachexia group had a more impaired performance status, a lower body mass index, and a higher frequency of weight loss in 1 month (P = 0.021,

Abstract Background Research on the nature of a “good death” has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. Methods We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. Results Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: “Pain and Symptoms Controlled,” “Being Provided Basic Care,” and “A Place like Home.” Other themes were “Having Preferences Met,” “Receiving Respect as a Person,” “Care for Caregivers,” “Identity Being Preserved,” “Being Connected,” and “Satisfaction with Life and Spiritual Well-being.” “Care for Caregivers” showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. Conclusions The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model. Trial registration The Graduate School and Faculty of Medicine Kyoto University (R1924–1).

Background: Informing families of a patient's death is one of the most challenging responsibilities of clinicians who provide care for terminally ill patients. Although death pronouncement can be a highly stressful event for clinicians, no previous study has reported qualitative characteristics of the burden experienced by clinicians related to death pronouncements. Moreover, no scale has been developed to assess this burden. Objective: This study sought to develop a scale to evaluate clinicians' burden related to death pronouncement (Death Pronouncement Burden Scale for oncology practice [DPBS-oncol]) and examine its reliability and validity in Japan. Methods: We presented the DPBS-oncol to clinicians involved in oncology practice and examined its reliability and discriminant validity. To investigate the test-retest reliability of the scale, the DPBS-oncol was presented a second time to a subsample of the clinicians. Results: Factor analysis required a grouping of the 15 DPBS-oncol items into one factor. Cronbach's ? coefficient of the total score of DPBS-oncol was 0.94, and the intraclass correlation coefficient of the total score of DPBS-oncol was 0.89. Regarding discriminant validity, DPBS-oncol total score was moderately correlated with other available scales for assessing clinicians' attitudes to end-of-life care. Conclusion: This study was the first to develop a scale to evaluate clinicians' burden related to death pronouncement. The DPBS-oncol, which includes 15 items, was validated and shown to have sufficient reliability.

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.

Abstract Background It is currently unknown how widespread is the practice of palliative care in intensive care units (ICUs) in Japan. This study aimed to determine evaluate the delivery and self-reported practice of palliative care in ICUs in Japan. Methods A self-administered questionnaire was sent to the physician directors of all 873 ICUs in Japan in August 2020. Results Of the 873 institutions, 439 responded the questionnaire (response rate: 50%) and 413 responses were included in the analysis. The responding physicians thought palliative care was appropriate for physical symptoms (36%, 95% Confidence Interval [CI] 32–41), the provision of information (32%, 95% CI: 28–37), psychological distress (25%, 95% CI: 21–29) and in Post Intensive Care Syndrome (PICS) prevention (20%, 95% CI: 17–24). Only 4% (95% CI: 2–6) of participants indicated that they always provided palliative care screening for the patients admitted to the ICU. The most common method to determine eligibility for palliative care was the “prediction of prognosis by clinician’s experience” (54%, 95% CI: 50–59). Thirty-one percent (95% CI: 27–36) of participants responded that there was no clear method used to decide which patients need palliative care. Fifty-four percent of the participants answered they had no standardized protocols for symptom management at all. Less than 5% answered they had standardized protocols for end-of-life symptom management or terminal weaning off mechanical ventilation including extubation of endotracheal tubes. Conclusions In Japan, the dissemination of palliative care and its integration into ICU care appears insufficient. To improve the quality of life of patients who are admitted to ICU, it may be useful to implement palliative care screening and multidisciplinary conferences, to develop standardized protocols for symptom management and withholding or withdrawing of life-sustaining treatment, and to educate primary palliative care for all ICU physicians.

Summary: Background: The benefits of artificial nutrition and hydration in patients with head and neck cancer and esophageal cancer in the late stage remain unknown. We performed a secondary analysis of a cohort study to investigate the effects of enteral tube feeding (ETF) and parenteral nutrition and hydration (PNH) on survival in this population. Methods: Patients with head and neck cancer and esophageal cancer admitted to palliative care units were included. Information on primary nutritional administration routes during the first week of admission and data on the averaged calorie sufficiency rate/total calorie intake, e.g., 75%≤/750 kcal/day≤ and

Abstract Background The appropriate delivery of death pronouncements potentially affects bereaved families’ wellbeing positively. Although younger physicians need to learn the competencies and entrustable professional activities (EPAs) to conduct death pronouncement independently, both of which have not been clarified. Therefore, this study aimed to develop a list of competencies and EPAs necessary for death pronouncement practice, which resident physicians need to acquire by the end of their residency training (postgraduate year 2). Methods An anonymous modified Delphi study was conducted with a panel of 31 experts. The experts were invited online from general wards in hospitals with resident physicians across Japan to participate in the study using the purposive and snowball sampling method. A non-anonymous web conference was held with three additional external evaluators to finalize the item list. The consensus criterion was defined as a mean response of at least 4 points on a 5-point Likert scale for each competency and EPA item and a rating of 4 or 5 points by at least 80% of the participants. Results Consensus was achieved, with consistently high levels of agreement across panel members, on 11 competencies and 9 EPA items. Additionally, a correspondence matrix table between competencies and EPAs was developed. Conclusions This study clarified the standardized educational outcomes as competencies in death pronouncement practice and the unit of professional practice of physicians who can perform this independently (EPAs), serving as a blueprint to aid the development of an educational model and evaluation method for clinical educational institutions and developers of medical school curriculums.

Identifying the cause of death is important for the study of end-of-life patients using claims data in Japan. However, the validity of how cause of death is identified using claims data remains unknown. Therefore, this study aimed to verify the validity of the method used to identify the cause of death based on Japanese claims data. Our study population included patients who died at two institutions between January 1, 2018 and December 31, 2019. Claims data consisted of medical data and Diagnosis Procedure Combination (DPC) data, and five definitions developed from disease classification in each dataset were compared with death certificates. Nine causes of death, including cancer, were included in the study. The definition with the highest positive predictive values (PPVs) and sensitivities in this study was the combination of "main disease" in both medical and DPC data. For cancer, these definitions had PPVs and sensitivities of > 90%. For heart disease, these definitions had PPVs of > 50% and sensitivities of > 70%. For cerebrovascular disease, these definitions had PPVs of > 80% and sensitivities of> 70%. For other causes of death, PPVs and sensitivities were < 50% for most definitions. Based on these results, we recommend definitions with a combination of "main disease" in both medical and DPC data for cancer and cerebrovascular disease. However, a clear argument cannot be made for other causes of death because of the small sample size. Therefore, the results of this study can be used with confidence for cancer and cerebrovascular disease but should be used with caution for other causes of death.

Summary: Background & Aims: The prevalence of artificially administered nutrition and hydration (AANH) in different age groups among patients with advanced cancer remains unknown. The present study investigated the current utilization of AANH according to age groups in palliative care units. Methods: This was a secondary analysis of a prospective cohort study. We obtained information on primary nutritional administration routes during the first week of admission and data on the averaged calorie sufficiency rate or total calorie intake on the 7th day of admission. Patients were divided into five age groups (18–39, 40–59, 60–74, 75–89, and 90- years). Among patients receiving AANH, the proportions of higher-calorie AANH were compared between the five age groups. Results: A total of 1453 patients were included. The proportion of patients categorized as receiving nutrition and hydration via the parenteral route was the highest in the 18–39 and 40–59 groups (52.4 and 41.1%, respectively). Among patients receiving AANH (n = 534), the proportions of patients categorized into the

Background: Data regarding the quality of end-of-life care for patients with noncancerous illnesses are lacking. Objective: This study aimed to evaluate end-of-life care for patients with noncancerous respiratory disease from the perspective of bereaved family members and explore the factors associated with the quality of patient death and care. Design: This cross-sectional study included patients who had died of noncancerous respiratory disease in general wards of pulmonary department in Japan between 2014 and 2016 and conducted an anonymous self-report questionnaire survey for the patients' bereaved family members. Measurements: We evaluated overall satisfaction with care and the quality of death and end-of-life care using the Good Death Inventory (GDI) and Care Evaluation Scale (CES), respectively. A multiple linear regression analysis was performed to explore the factors associated with these outcomes. Results: In total, 130 questionnaires were distributed, and the effective response rate was 38% and 50 patients were included (median age: 82 [range 58?101] years; 37 men [74%]). Primary diagnoses at death included 29 cases of pneumonia (58%), 15 interstitial lung disease (30%), and 3 chronic obstructive pulmonary disease (6%). Of the bereaved family members, 26 (52%) were spouses, and 19 (38%) were children (median age [range]: 68 [33?102] years, 15 men [30%]). The overall CES and GDI scores (mean???standard deviation) were 77???15 and 79???15, respectively. The presence of dementia was an independent factor associated with high CES and GDI scores in the multiple linear regression analysis. Conclusions: In patients who died of noncancerous respiratory disease, the presence of dementia could be associated with the higher quality of patient death and care. In dementia, an understanding of the terminal nature of this condition may lead to an appropriate end-of-life care.

Background: During end-of-life care, the place in which the patients spend time influences their quality of life. Objective: To clarify what it means to spend last days at home and in inpatient hospice. Design: This study was a part of a nationwide multicenter questionnaire survey of bereaved family members of cancer patients evaluating the quality of end-of-life care in Japan. Setting/Subjects: A nationwide questionnaire survey was conducted with 779 family members of cancer patients who had died at inpatient hospices. We asked participants about the perceived benefits of spending last days at home and inpatient hospice during the patient's last days. Measurements: A nationwide questionnaire. Results: Of participants, 37.6% (n?=?185 [95% confidence interval, 33%?42%]) felt that the inpatient hospice was like a home. The family members who reported that the inpatient hospice felt like home significantly tended to report high satisfaction with the level of care (p?0.01). Factors that the participants perceived as benefits of the inpatient hospice were: ?If anything changes, as health care professionals are easily available, he/she can handle it? (88.1%), ?he/she is reassured? (78.4%), and ?he/she is safe? (72.7%). On the contrary, factors that they perceived as benefits of home were: ?He/she can do what he/she wants to do without worrying about the eye of other people? (44.1%), ?he/she can relax? (43.5%), and ?he/she is free? (42.0%). Conclusions: Spending the last days of life in either an inpatient hospice or at home has specific benefits. The place a patient spends his/her end-of-life days should be based on patient and family values.

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.

Purpose: A quality indicator (QI) is a valuable tool to evaluate the quality of health care systems. In palliative radiation oncology, only a few related QIs have been developed to date. In this study, we sought to develop and pilot test QIs that assess the quality of care in palliative radiation therapy. Methods and Materials: A modified Delphi method was used to establish consensus with an expert panel. The panel consisted of 8 radiation oncologists who have expertise in palliative radiation oncology and 1 expert on Delphi methodology. Online panel meetings and e-mail surveys were conducted to develop QIs on palliative radiation therapy for bone and brain metastases. Feasibility of measurement was assessed though pilot surveys that were conducted by radiation oncologists at 5 facilities. Results: After 3 online meetings and 2 e-mail surveys, we developed 4 QIs on bone metastases and 3 QIs on brain metastases. Two email surveys and 2 pilot surveys confirmed the validity of QIs and the feasibility of measurement, respectively. Conclusions: We developed valid and feasible QIs on palliative radiation therapy for bone and brain metastases. Our work may contribute to reduce the evidence–practice gaps in palliative radiation oncology.

Background: Toward the individualized care of terminally ill patients with dyspnea (?terminal dyspnea?), it is essential to identify individualized goals of care (GOC) to achieve an acceptable balance between dyspnea intensity and communication capacity. Objective: To explore preferences for individualized GOC for terminal dyspnea, and factors associated with the preferences. Design: A nationwide cross-sectional survey. Setting/Subjects: In total, 1055 bereaved families of cancer patients admitted to 167 inpatient hospices in Japan. Measurements: Preferences for individualized GOC for terminal dyspnea to achieve an acceptable balance between dyspnea intensity and communication capacity, should individuals experience continuous moderate or severe/overwhelming dyspnea despite optimal palliative care, and perceptions about a good death. Results: Among 548 participants (response rate?=?52%), we analyzed responses of 477 families whose loved one suffered dyspnea in the last week of life. In total, 167 (45%; 95% confidence interval [CI]?=?40%?50%) and 272 (80%; 95% CI?=?75%?84%) participants would prioritize dyspnea relief over communication capacity, should they continuously suffer moderate or severe/overwhelming dyspnea, respectively. In multivariate analyses, the determinants of the prioritization of dyspnea relief were perceiving physical comfort as important for a good death (odds ratio [OR]?=?1.389; 95% CI?=?1.062?1.818; p?=?0.017) in moderate dyspnea, and perceiving physical comfort (OR?=?2.505; 95% CI?=?1.718?3.651; p?0.001) and not perceiving mental awareness (OR?=?0.695; 95% CI?=?0.529?0.913; p?=?0.009) as important in severe/overwhelming dyspnea. Conclusions: Preferences for individualized GOC for terminal dyspnea can vary among individuals and with different symptom intensity, and may be influenced by perceptions about a good death. Outcome measurements incorporating an acceptable balance between dyspnea intensity and communication capacity should be developed.

Background: Limited information is available on the relationship between C-reactive protein (CRP) levels and pain in advanced cancer. Objectives: To investigate the relationship between serum levels of CRP and subtypes of pain. Design: A secondary cross-sectional analysis of a prospective cohort study. Setting/Subjects: Patients with advanced cancer admitted to 23 palliative care units in Japan. Measurements: Patients rated the severity of pain on the numerical rating scale (NRS) and physicians evaluated pain on the integrated palliative care outcome scale (IPOS). Physicians assessed neuropathic pain and breakthrough pain based on their presence or absence. Patients were divided into four groups according to CRP levels. Comparisons were performed using the Kruskal?Wallis test or chi-squared test. To evaluate the relationship between CRP and subtypes of pain, adjusted odds ratios (ORs) and 95% confidence intervals (CIs) in logistic models were calculated. Results: We divided 1513 patients into four groups: low CRP (n?=?234), moderate CRP (n?=?513), high CRP (n?=?352), and very high CRP (n?=?414). Spearman's correlation coefficient between CRP and pain NRS and that between CRP and pain IPOS were 0.15 (p?0.001) and 0.16 (p?

Abstract Background Constant evaluation is important for maintaining and improving the quality of end-of-life care. We therefore conduct the fourth Japan Hospice and Palliative Evaluation Study (J-HOPE4) as a continuous evaluation study. In this present paper, we describe the design of J-HOPE4. The main purposes of J-HOPE4 are as follows:1) to evaluate the processes, structures, and outcomes of palliative care acute hospitals, palliative care units, and home hospice services; 2) to examine bereaved family members’ self-reported psychosocial conditions, such as grief and depression as bereavement outcomes;3) to provide data to ensure and improve the quality of care provided by participating institutions via feedback based on the results from each institution; and 4) provide clinical and academic information concerning the implications of various issues in palliative care by conducting additional studies. Methods We will conduct a cross-sectional, anonymous, self-reported questionnaire survey. In total, 190 institutions will participate in this study, meaning that 12,000 bereaved family members will be sent a questionnaire. Discussion This is one of the largest cross-sectional surveys involving hospice and palliative care, both in Japan and worldwide. Because this study will have a large sample size, the findings are expected to be generalizable to other settings.

The number of deaths of older adults in long-term care settings will increase with the aging population. Nurses and care workers in these settings face various challenges in providing end-of-life care, and interventions for quality end-of-life care may be useful. This feasibility study aims to explore the preliminary effect and acceptability of an intervention named the EOL Care Tool to improve end-of-life care in long-term-care facilities. We conducted a single-arm quasi-experimental study using mixed methods. This tool consisted of multiple components: professionalized lectures, newly developed structured documents, regular conferences regarding end-of-life care, and educational support from administrators. Twenty-four nurses and fifty-five care workers employed in a long-term care facility participated. For nurses, improvement in attitudes toward end-of-life care (p < 0.05) and interdisciplinary collaboration (p < 0.05) were shown quantitatively. Regarding acceptability, nurses and care workers evaluated the tool positively except for the difficulty of using the new documents. However, qualitative results showed that care workers felt the reluctance to address the work regarding end-of-life care. Therefore, a good preliminary effect and acceptability for nurses were indicated, while acceptability for care workers was only moderate. Revision to address the mentioned issues and evaluation of the revised tool with a more robust research design are required.

Having a “good death” is a very important goal of palliative care, and it is useful for nurses to understand cultural differences in the perception of a good death to propose nursing care. The purpose of this study was to compare the perception of a “good death” among community-dwelling Japanese and Thai people. Three hundred sixty-nine respondents completed the Good Death Questionnaire. The research design was a cross-sectional study. The scores of the Japanese respondents on “good relationships with medical staff,” “being respected as an individual,” and “fighting against cancer” were higher among Thai respondents. On the other hand, “environmental comfort,” “unawareness of death,” “control over the future,” and “religious and spiritual comfort” were higher among the Japanese respondents. Among the Japanese, the score for “life completion” was significantly correlated with “role accomplishment and contribution to others.” Among the Thai respondents, the score for “good relationships with family” was significantly correlated with “physical and cognitive control.” The implications of these results were that Japanese respondents preferred medical treatments, maintaining a good relationship with physicians, and demanding to be respected as an individual. Thai respondent’s preferred “environmental comfort” and “religious and spiritual comfort.” In the future, medical staff members will need to consider these cultural differences when proposing nursing care.

This study aimed to investigate views on life and death among physicians, nurses, cancer patients, and the general population in Japan and examine factors affecting these views. We targeted 3,140 physicians, 470 nurses, 450 cancer patients, and 3,000 individuals from the general population. We used the Death Attitudes Inventory (DAI) to measure attitudes toward life and death. The collection rates were 35% (1,093/3,140), 78% (366/470), 69% (310/450), and 39% (1,180/3,000) for physicians, nurses, patients, and the general population, respectively. We found that age, sex, social role (i.e., physician, nurse, cancer patient, and general population) were significantly correlated with DAI subscales. Compared with general population, attitudes toward death of physicians, nurses and cancer patients differed significantly even after adjusted their age and sex. Our study is the first to analyze differences in views on life and death among physicians, nurses, cancer patients, and the general population in Japan.

BACKGROUND: Complicated grief, which is often under-recognized and under-treated, can lead to substantial impairment in functioning. The Brief Grief Questionnaire (BGQ) is a 5-item self-report or interview instrument for screening complicated grief. Although investigations with help-seeking samples suggest that the BGQ is valid and reliable, it has not been validated in a broader population. METHODOLOGY/PRINCIPAL FINDINGS: A questionnaire was mailed to a randomly selected sample (n = 5000) residing in one of 4 areas of Japan. The BCQ was examined for responders who were bereaved more than 6 months and less than 10 years (n = 915). Non-specific psychological distress was assessed with the K6 screening scale. Multiple group confirmatory factor analysis supported a uni-dimensional factor structure and the invariance of parameters across gender and age. Cronbach's alpha was sufficiently high (alpha = .75) to confirm internal consistency. Average Variance Extracted (0.39) was higher than the shared covariance (0.14) between BGQ and K6, suggesting discriminant validity. CONCLUSIONS: The results of this study support the reliability and validity of the BGQ in the Japanese population. Future studies should examine predictive validity by using structured interviews or more detailed scales for complicated grief.

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. [ABSTRACT FROM AUTHOR]