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This paper aimed to summarize the current situation of prognostication for patients with an expected survival of weeks or months, and to clarify future research priorities. Prognostic information is essential for patients, their families, and medical professionals to make endof-life decisions. The clinician’s prediction of survival is often used, but this may be inaccurate and optimistic. Many prognostic tools, such as the Palliative Performance Scale, Palliative Prognostic Index, Palliative Prognostic Score, and Prognosis in Palliative Care Study, have been developed and validated to reduce the inaccuracy of the clinician’s prediction of survival. To date, there is no consensus on the most appropriate method of comparing tools that use different formats to predict survival. Therefore, the feasibility of using prognostic scales in clinical practice and the information wanted by the end users can determine the appropriate prognostic tool to use. We propose four major themes for further prognostication research: (1) functional prognosis, (2) outcomes of prognostic communication, (3) artificial intelligence, and (4) education for clinicians.
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Aims: This study aimed at investigating the status of polypharmacy and the experience and perception of bereaved family members of patients with advanced cancer regarding the burden of oral medication. Methods: Self-administered questionnaires were mailed to 303 bereaved family members of patients with advanced cancer, and 102 valid responses were analyzed (response rate, 33.7%). Results: The number of patients in the polypharmacy group (patients taking six or more tablets at a time) was 65 and that in the non-polypharmacy group (patients taking less than six tablets at a time) was 37. The percentage of bereaved family members who felt that the oral administration burden of patients was significantly higher in the polypharmacy group (43.1% vs. 10.8%, p<0.01). The results of the analysis indicated that the bereaved families wanted to reduce the number of tablets taken at a time for alleviating the burden of polypharmacy. The bereaved families of patients in the polypharmacy group were greatly concerned that the number of oral medications was too large. They also expressed the need for medical staff from whom they could seek explanation and counseling regarding the oral medication of patients. Conclusion: It is suggested that medical staff need to be fully aware of the concerns of patients’ families regarding drugs besides checking the compliance status.
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This study sought to evaluate how a training program on spiritual care affected physicians’ confidence, self-reported practice, and attitudes in caring for terminally ill cancer patients who express meaninglessness in living. Questionnaires were distributed to participating physicians before and after the training program. A total of 30 physicians completed the program. Confidence and self-reported practice regarding communication with terminally ill cancer patients who express meaninglessness significantly improved after the training: effect size, 1.3 (P=0.0001) and 1.2 (P=0.0001), respectively. Moreover, physician-reported helplessness significantly decreased (effect size, 0.8; P=0.0001) and positive appraisal and willingness to participate in caring for terminally ill cancer patients experiencing meaninglessness significantly improved (effect size, 0.8, P=0.0001; effect size, 0.4, P=0.0001, respectively). Overall, 96–100% of the participating physicians reported the program was useful for understanding the concept of spiritual care and for learning a practical approach for caring for such patients.
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Background: Consideration of cultural aspects is important in medical care. We explored regional differences in cancer and palliative care among Okinawa, Tohoku, and Tokyo metropolitan area. Methods: We conducted a questionnaire survey of physicians involved in cancer medicine from September to November 2020. A total of 11 items related to physician experiences were rated using a 5-point Likert-type scale. Results: Responses were received from 553 physicians (187 in Okinawa, 219 in Tohoku, 147 in the Tokyo metropolitan area). In Okinawa, “When patients die, it is important that all family members are present at the last moment,” “Patients/family members primarily consult the elders of the family about the medical treatments,” “Family members hope the patients die at home, because the soul will not return when they die at the hospital,” “Patients/family members get advice from religious advisors about the medical treatments,” and “Family members wish to take the patient home when he/she is about to die and to confirm death at home” were significantly more frequently observed. In Tohoku, “Patients wish to be hospitalized at a specific season” was significantly more frequently reported. In Tohoku and Okinawa, “Patients hide cancer from neighbors and relatives” and “Elderly patients do not want treatment, because they cover the living expenses and education expenses for their children and grandchildren.” were significantly more frequently experienced. Conclusion: There are regional differences in cancer and palliative care in Japan. Being sensitive to the culture of the region is needed.
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Objectives: Spiritual pain is not formally defined. The aim of this study was to clarify the beliefs about spiritual pain among Japanese palliative care physicians and liaison psychiatrists and to compare their beliefs. Methods: A nationwide questionnaire survey was conducted by mail August, 2019 on certified palliative care physicians and liaison psychiatrists. We asked 9 questions about spiritual pain (i.e. current status, definition, and the delivery of care) using a 5-Likert scale. Result: 387 palliative care physicians (response rate, 53%) and 374 psychiatrists (45%) responded. 72% (76% of the palliative care physicians/69% of the psychiatrists) reported that spiritual pain was distinct from depression, but 69% (66/71) reported that it was not defined adequately; and 59% (59/60) perceived the risks of using the words ambiguously. Only 43% (40/47) recommended the universal definition of spiritual pain, and opinions about how spiritual pain should be defined (i.e, higher being, meaning/value, or specific terms) differed among physicians. Perception about spiritual pain of the physicians were significantly associated with their religion, while beliefs about spiritual pain were essentially similar between palliative care physicians and psychiatrists. Conclusion: Although physicians regarded the definition of spiritual pain as being inadequate, the opinions about preferable definition differed among physicians. Discussion about the value of developing a consensus of spiritual pain is needed.
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The purpose of this study is to clarify the current state of nursing for the sexuality of patients with cancer at the end-of-life. In December 2018, we asked 313 nurses from 18 palliative care units in Kanagawa Prefecture about their awareness, feelings, and behavioral intentions and hands-on experience for the environment in which patients with cancer nurture love with their partners at the end-of-life. The collection rate of the questionnaire was 52.7% (165 cases). Eighty-two nurses (49.7%) had experience supporting the environment in which patients with cancer nurture love with their partners at the end-of-life. The contents of the support were “Recommend physical contact”, “Listening”, “Recommend hug”, and “Take sufficient time when entering the room, such as waiting for a reply after knocking or calling out”. Meanwhile, at ward conferences, only 11 (6.7%) had talked about the environment in which patients with cancer nurture love with their partners at the end-of-life. It has been suggested that, at present, support for the environment in which patients with cancer nurture love with their partners at the end-of-life is left to individuals and not systematically.
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Food and eating are of great significance to humans, as we are the only creatures that establish relationships and sustain a social network through food and eating. Recent studies revealed that patients with advanced cancer and their family members often experience complicated eating-related distress due to tumors themselves, side effects of cancer treatments, and negative impacts of cancer cachexia. Therefore, we suggested the importance of the integration of palliative, supportive, and nutritional care to alleviate eating-related distress among patients and family members, and the significance of the development of tools to measure their distress in supportive and palliative care settings. No care strategies for eating-related distress experienced by patients and family members have been established, and the development of an interdisciplinary psychosocial approach and integrative care is required. As such, we are planning to start a nutritional support and cancer cachexia clinic in the National Cancer Center, and disseminate a newly developed care program across Japan.
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The aim was to explore existential suffering n physicians caring for terminally ill cancer patients. We performed qualitative analyses of 30 physician-reported descriptions of the clinical experience of caring for terminally ill cancer patients. Analyses were conducted using descriptive phenomenology to clarify the meaning of physicians’ experiences, guided by the three dimensions of Murata’s human being model. In their descriptions, all physicians mentioned existential suffering related to incompetence, and three themes were identified: 1) physicians who focus on the limitations of what they can achieve with curative or palliative treatment feel a sense of incompetence; 2) physicians who focus on difficulties in caring for patients with existential suffering feel a sense of incompetence; and 3) physicians who focus on environmental factors, such as work overload and insufficient communication skills training, experience a sense of incompetence. Physicians experience a sense of incompetence when they face treatment limitations and/or difficulties in caring for patients with existential suffering.
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To decide the policy to promote palliative care properly, a new questionnaire has been added to Patient’s behavior survey to assess Quality of Life (QOL) of inpatients and outpatients in Japan. The aim of this study was to survey QOL score of general population in Japan by using a questionnaire of patient’s behavior survey. A large nationwide postal survey was conducted from January through February 2013 in Japan. A total of 2400 subjects were selected randomly from among members of the general population who were 20 to 79 years of age and lived in Japan. A total of 978 (41.1%) questionnaires were analyzed, and reference data of QOL score weighted by the national standard value of sex-age group population were calculated. Correlation coefficients were calculated between QOL score and SF-8TM, Patient Health Questionnaire-9 (PHQ-9), Eastern Cooperative Oncology Group Performance Status (ECOG), Memorial Symptom Assessment Scale (MSAS) score. In addition, sociodemographic factors related to QOL score were evaluated. From the perspectives of public health and administrative policy, the results of this survey will provide important basic data to evaluate patient’s behavior survey broadly and continuously with the goal of establishing a palliative care system in Japan.
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Objectives: To assess the perception of care and outcomes of end-of-life palliative care by bereaved family members to determine differences in care provided to patients with and without cancer. Methods: This cross-sectional, anonymous survey using a self-reporting questionnaire for bereaved family members was conducted online. Care was assessed using overall satisfaction score and the care evaluation scale (CES) and outcomes were assessed using good death inventory (GDI). Results: The present study included data from 118 patients with cancer and 299 patients without cancer (103, heart failure; 71, stroke; and 125, pneumonia). The overall satisfaction score was not significantly different between patients with and without cancer. Conversely, physical care score in the CES and autonomy score in the GDI were significantly lower in patients without cancer than in patients with cancer (p<0.05). Conclusion: The satisfaction with end-of-life care was comparable between the bereaved family members of patients without cancer and those of patients with cancer. However, results related to some items of CES and GDI suggest that some components of end-of-life care for patients without cancer might require attention. Not only treatment of the underlying disease but also relief of suffering is important to improve end-of-life care.
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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.
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There is a lack of recognition regarding the negative impact of cancer cachexia on advanced cancer patients and their family members. Management of cancer cachexia should address not only patients’ physical problems, but also psychosocial burdens of both patients and their family members. Eating-related distress (ERD) is one of the most representative psychosocial burdens experienced during cancer. Summary points of palliative care and nutritional support for ERD experienced by patients and their family members are described as below. 1) Management strategies should address ERD experienced by patients and their family members. 2) If multimodal treatments reduce the negative impact of cachexia, ERD placed on patients and their family members might be alleviated. 3) The main causes of ERD experienced by patients and their family members are a lack of knowledge about cachexia, unsuccessful attempts to increase body weight, expected occurrence of the patient’s death, and conflicts over food between them. 4) Supportive, communicative, and educational interventions would alleviate ERD of patients and their family members. 5) Palliative care and nutritional support for ERD experienced by patients and their family members needs to be tailored to the severity of the patient’s cachexia, especially in cases of refractory cachexia. Since ERD can change during cancer, palliative care and nutritional support need to be tailored to each advanced cancer patient and their family.
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Training system of palliative care in Japan has not been fully established, and young physicians’ needs for palliative care training are not nearly satisfied. We have recently conducted a nationwide survey to clarify unmet learning needs among Japanese physicians in specialty training in palliative care and the potential solutions they favored to meet those needs. Here we report findings of content analyses of free comments in the survey. Of 284 physicians, 253 (89%) responded, and 229 were eligible after we had excluded resident physicians with less than 2 years of clinical experience and board-certified palliative care physicians. The content analyses from 80 physicians (35%) identified 162 codes with respect to needs for improvement which were further classified into 24 subcategories and 9 categories (e.g., contents of subspecialty training, certified facilities, research capabilities, learning environment and methods, system of board certification, and networking). These findings may help improve specialty training in palliative care in Japan.
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Objectives: To explore background factors contributing to learning needs among physicians in palliative care specialty training. Methods: We conducted a questionnaire survey of physicians in specialty training in palliative care who were within 15 years after medical school graduation. The unmet learning needs (referred to as “needs”) were evaluated on a 5-point scale. Factor analysis was performed to identify underlying subscales of needs. Univariate analysis was performed using an average score of each subscale as a dependent variable and background factors as independent variables. Results: Of 284 physicians, 253 (89%) responded, and 229 were eligible after we had excluded resident physicians with less than 2 years of clinical experience and board-certified palliative care physicians. Factor analysis identified six subscales of the unmet learning needs: research, time, specialist, network, quality, and comprehensiveness. Background factors with significant between-group differences with the effect size of 0.4 or more included: 1) not working at a certified training facility, 2) not working or training at a big hospital, and 3) the number of palliative care physicians being 2 or less in the facility. Conclusion: Improvement of the training system is urgently needed for young physicians who are working at small or non-certified facilities for specialty training, or who have few palliative care colleagues.
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The aims of this study are 1. to evaluate the usability of workshop to introduce and manage distress screening effectively and efficiently and to use it for cancer patients and their family and 2. to consider the appropriate subject of workshop. All of the participants answered the questionnaire on the site (n=51). Their knowledge about screening practice, various screening tools and how to use screening tools and data from screening tool were significantly improved after the workshop. The workshop was highly regarded by participants. Thirty-eight of fifty-one patients responded to web questionnaire three months later (Response rate: 75%). More than thirty percent of participants put into practice what they learned in the workshop. The workshop decreased factors to interfere screening practice three months later. Knowledge about how to use screening tools was negatively correlated to number of cancer patients at hospital where participants worked and number of their hospital beds. And factor to interfere screening practice was negatively correlated to how long participants were involved in palliative care team. This study indicated the usability of workshop to spread screening triage program regarding cancer patients’ distress. The workshop may be appropriate for medical staffs who have relatively much experience of palliative care team and who have difficulty in screening practice at designated cancer hospitals where number of cancer patients is relatively large.
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<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>
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<p>The experience at the time of a patient’s death can affect the mental health of bereaved families. Performing death pronouncements is an important skill for end-of-life care. However, almost no educational content regarding death pronouncements is presently included in medical educational programs. We have created a guidebook for “Physician behavior at the time of death pronouncement” based on the results of a questionnaire given to the families of deceased patients that included several items related to this topic. The purpose of this research was to investigate the educational effect of using this guidebook. The guidebook was given to 4th-year medical students attending the Yokohama City University School of Medicine. A survey was then conducted to assess evaluations of self-practice and feelings of difficulty at the time of making death pronouncements both before and after the class. Among the 39 students who provided valid responses, the majority (89.5%) indicated that they had difficulty with the item regarding “the specific method of death pronouncement.” A significant improvement was observed between the responses obtained before and those obtained after the class. We concluded that our guidebook for physician behavior at the time of death pronouncement might be useful for the education of medical students.</p>
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<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>
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<p>Understanding the symptoms of the general population has an important role in assessing and improving the quality of palliative care systems. However, there are no reliable epidemiological data on the symptoms of the general population in Japan. The aim of this study was to survey the actual status of the symptoms experienced by the general population in Japan. A large nationwide postal survey was conducted from January through February 2013 in Japan. A total of 2400 subjects were selected randomly from among members of the general population who were 20 to 79 years of age and lived in Japan. The Memorial Symptom Assessment Scale (MSAS) was used to multi-dimensionally evaluate symptoms experienced within the past week, and the Short Form 8™ (SF-8™) was used to assess the health-related quality of life (QOL). A total of 978 (41.1%) self-completed questionnaires were analyzed. The prevalences, severity rates, and distress rates of 35 physical and psychological symptoms were analyzed according to sex and age group. In addition, the relation between symptom severity and the health-related QOL score was evaluated. From the perspectives of public health and administrative policy, the results of this survey will most likely provide important basic data, with the ultimate goal of establishing a palliative care system in Japan. </p>
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<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>