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

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

Development of Nursing Practice Scale of Cancer Pain Management and Examination of Reliability and Validity

The aims of this study were (1) to develop and validate the scale to measure evidence-based nursing practice in cancer pain management and (2) to identify associated factors. We developed potential items based on the 2014 version of Japanese Clinical Guidelines for Cancer Pain Management and administered anonymous questionnaire for 189 oncology nurses in a designated cancer center. We conducted a re-test to test reliability.167 nurses participated in the study. As a result of item analysis and exploratory factor analysis, we developed a nursing practice scale of cancer pain management and its shortened version. This scale consists of 1 domain 50 items The Cronbach’s α coefficient showing internal consistency was 0.98 (shortened version 0.88). The intra-class correlation coefficient of reliability was 0.52 (shortened version 0.77). Concurrent validity was confirmed by the correlation between the total score of the whole scale and the total score of the practice of palliative care, knowledge, difficulty, self-confidence scale. We concluded that this scale was valid and reliable. Factors related to the nursing practice of cancer pain management were years of experience in cancer nursing, opportunities of postgraduate education, and satisfaction with postgraduate education. This scale can be used for evaluation of daily clinical practice and practice evaluation after educational efforts such as cancer pain nursing training.

Feasibility, Surface and Content Validity of the Integrated Palliative care Outcome Scale (IPOS) for Non-cancer Patients

Purpose: To examine the feasibility of the Integrated Palliative care Outcome Scale (IPOS), a comprehensive palliative care scale, for non-cancer patients. Methods: Twenty non-cancer patients and 20 healthcare providers who provide care to the participating patients were asked to complete the IPOS questionnaire, and cognitive interviews were conducted with them. The interviews were analysed using content analysis, a qualitative analysis method. Results: About half to 90% of both patients and healthcare providers answered that they did not find it difficult to answer or understand all items of the IPOS. Therefore, we confirmed its surface validity, and the content validity of the IPOS was confirmed. Conclusion: The surface validity and content validity of the IPOS for non-cancer patients were confirmed, and it became clear that the IPOS can be used as a comprehensive assessment tool for the palliative care of non-cancer patients.

Attitudes and Barriers of Physicians toward Palliative Care in Critical Care Setting:Qualitative Content Analysis Using Open-ended Data from Nationwide Self-administrated Questionnaire Survey in Japan

Purpose: Palliative care implementation should take into account the perceptions and acceptability of healthcare providers. This study aimed to identify physicians’ perceptions of palliative care and barriers to palliative care practice in the critical care setting. Methods: A nationwide, self-administered questionnaire was distributed to physicians working in intensive care units, and free-text data were qualitatively analyzed. Results: The questionnaire was sent to 873 respondents, and 436 responded (50% response rate). Of these, 95 (11%) who responded to the open-ended sections were included in the analysis. Conclusion: Japanese physicians working in ICUs recognized that palliative care was their role and practiced it as part of their usual care. They felt, however, that the practice was difficult and not sufficient. Barriers to practice included the lack of human resources and availability of palliative care teams, and the lack of uniformity in the perception of palliative care in the critical care setting.

The Farewell Prayer Gathering Held by the Chaplain after a Patients’ Death in Our Inpatient Hospice at the Japan Baptist Hospital: An Evaluation by Bereaved Families Using a Questionnaire Survey

Purpose: Our purpose is to report an actual performance of our farewell prayer gathering held by the chaplain in our inpatient hospice at the Japan Baptist Hospital, and to describe what impressions and thoughts the bereaved families had about our farewell prayer gathering. Method: The questionnaires were sent to 84 patients’ families asking about our farewell prayer gathering. We analyzed the content of their comments. Results: Among the 40 families that responded, 15 families experienced our farewell prayer gathering. The words such as “prayer” and “participation of the staff” were mentioned as the favored experiences. The bereaved families felt “an emotional closure”, “peace of mind”, and “healing of mind and body”. They also found the gathering as “an opportunity to look back” and “special memorable moment”. Discussion: Our farewell prayer gathering is likely to be helpful for the bereaved to give peace to their mind and to reduce feelings of loss. By sharing the voices of bereaved families, it will be helpful for the betterment of grief care to future bereaved families in hospice care. We would like to see further research in the future.

Development of a Patient Registry System for Specialized Palliative Care Quality Assessment Using Patient-reported Outcomes: A Multicenter Pilot Study

Objective: This study aimed to investigate the feasibility of a patient registry system for assessing PCT (palliative care team) by PRO (Patient-reported outcome) in Japan. Methods: We operated a patient registry system with electronic data collection at eight hospitals in 2021 in Japan. We consecutively included newly referred patients for a month and followed up with them for a month. IPOS or ESAS obtained as PRO at the start of the intervention, three days later, and every week after. The primary endpoint was the response rate to the symptom rating scale by patients and providers. Results: 318 patients were enrolled. The patient response rate was 59.1% at intervention and 37.0% after intervention, and the medical provider response rate was 98.4% at intervention and 70.3% after intervention. Interviews with PCT members indicated that participants required support to input PRO responses required support and paper questionnaire was better and that managing the survey date and overall management was burdensome. Discussion: Although only about half of the patients were able to respond to the PRO, this was the same level as in previous studies. The system and its operation method have many problems. We found that improvements such as reducing items and making the patient interviews paper-based are necessary to expand the system nationwide.

Spiritual Care Training Program’s Effects on Physicians’ Confidence, Self-reported Practice, and Attitudes in Caring for Terminally Ill Cancer Patients Who Express Meaninglessness

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.

How Cardiovascular Nurses Perceive the Need for Advanced Care Planning for Chronic Heart Failure with Patients and Their Families

Purpose: To determine how nurses perceive the need for advance care planning (ACP) for chronic heart failure with patients and their families. Methods: A questionnaire survey was administered with 427 nurses who were affiliated with implantable cardioverter-defibrillators and resynchronization therapy. The survey included 13 items related to the need for ACP for simulated advanced heart failure cases with patients and their families. Results: Valid Responses were obtained from 207 nurses. On out of all items, the least proprtion of participants (51%) responded “giving predictions about functional prognosis and life expectancy” should be performed with patients. The participants’ perceptions regarding 8 items, which included the items on communication about prognosis, reflected their belief that ACP should be performed with family members rather than the patient. It was found that participants with certification in chronic heart failure nursing were more likely to respond in favor of ACP being performed with the patients in relation to 7 items, which included “ask about what has been important in one’s life”, and being performed with the family in relation to 10 items that included “ask the family what kind of life you want the patient to have hereafter”, as compared to other nurses. Conclusion: Regarding ACP, it is suggested that nurses are careful in discussing prognosis with patients, and certified nurses tend to attach importance to the individualities and values of patients and their families.

Reference Data, Characteristics and Related Factors of Quality of Life Assessed by a Questionnaire of Patient’s Behavior Survey in the General Population in Japan

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.

Quality-of-life of Pediatric Cancer Patients Receiving End-of-life Care and Related Factors: Using a Proxy QOL Rating Scale from the Nurse’s Perspective

Objectives: The study purpose was to examine quality-of-life (QOL) of pediatric cancer patients at end-of-life and related factors using a QOL proxy rating scale from the nurse’s perspective. Methods: We conducted a survey in October 2015−February 2016. The subjects to be surveyed were nurses who were primarily in charge of patients with childhood cancer at end-of-life. We investigated 22 items of the Good Death Inventory for Pediatrics (GDI-P) and their related factors. Results: In total, 53 proxy evaluate questionnaires were completed from 18 centers. Among the eight factors of GDI-P, “Relief from physical and psychological suffering” was the lowest. The total score of GDI-P was positively correlated with the structure and process of care (r=0.58). Although there was a bias in the number of cases, in the case of the place of death was the intensive care unit, the total score of GDI-P was lower than home and the general ward. Conclusions: It was suggested that the top priority in improving QOL was relief from suffering and the structure and process of care were related to QOL.

Changes in Difficulty with Cancer Care among Nurses at Tohoku University Hospital between 2010 and 2016

The purposes of this study were to compare the response distribution of the result of using “nurse’s difficulty scale with cancer care” to nurses engaged in cancer nursing with 2010 survey at Tohoku University Hospital. Self-reported questionnaires were distributed to 512 nurses in 2010 and to 524 nurses in 2016. Responses from 356 (70%) nurses in 2010 and from 332 (63%) nurses in 2016 were analyzed. As a result of comparing the surveys of 2010 and 2016, the rate of correct answer in each items of the knowledge scale rose significantly (all p<0.05). From the items regarding their own knowledge and skills, difficulty in collaboration with the community, and end-of-life care decreased (both p<0.05). Despite the increase in the correct answer rate of the knowledge scale, the difficulty has become high. This may reflect the complexity in cancer care due to development of treatment.

End-of-life Care and Good Death of Dying Non-cancer Patients from the Perspective of Bereaved Family Members

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.

Development of a Scale for the Japanese Version of the Quality of Dying and Death in the Intensive Care Unit Instrument for Use by Nurses

We conducted a questionnaire survey of nurses to develop a scale for the Japanese version of the Quality of Dying and Death in the Intensive Care Unit (ICU-QODD) instrument for use by nurses. The questionnaire was based on “patient’s experience at the end of life” in ICU-QODD for health professionals in the United States. We assessed whether it could be used as a comprehensive evaluation tool. Respondents included 1,372 nurses for factor validity and internal consistency, and 39 nurses for test-retest reliability. Two factors, “physical symptoms” and “dignity” that comprised 6 items were identified. Cronbach’s alpha values were 0.89 and 0.75, respectively. Intraclass correlation coefficients were 0.62 and 0.72, respectively. Sufficient reliability and validity were confirmed. It was suggested that 6 out of 15 items could be used as for comprehensive evaluation of the ICU-QODD.

The Job Types and Related Factors That Physicians and Nurses Feel Easy to Consult about Pediatric Cancer Patients’ and Their Families’ End of Life Care

Objective: The purpose of this study was to clarify the job types and related factors that physicians and nurses feel easy to consult about pediatric cancer patients’ and their families’ end of life care. Design and methods: We conducted a self-reported questionnaire survey for physicians and nurses who have experienced at least one case of end of life care of childhood cancer. In the survey, we asked participants about whether they feel easy to consult about 15 job types such as palliative care team, certified nurse specialist in child health nursing, physicians and nurses of the same team. Results: A total of 427 physicians and nurses participated in this study. More than 70% of the respondents felt that it felt easy to consult with three job types such as “Nurses of the same team” and “Physicians of the same team”. Job types of the respondents were the main related factors in the most job types. Physicians felt easier to consult with person in each job type than nurses. Consideration: It was suggested that it would be necessary to consider the systems that allow individual professionals to feel easy to consult with persons in each job type, such as specifying consultation methods and procedures for each job type, and introducing inter-professional education.

A Booklet for Families of Children Dying with Incurable Cancer: Development and Feasibility Study by Opinions of Pediatric Oncology Specialists

The purpose of this study was to clarify feasibility of a booklet for families of children dying with incurable cancer. Of 267 pediatric oncology specialists, 76 (28%) participated in this cross-sectional survey. Ninety-three percent of participants answered that they were “likely to use” the booklet, and 86% percent answered that they believed the booklet was “helpful” for families. Some participants described various advantages of its use as follows: “able to communicate something that is difficult to put into words,” “easy to understand for families,” “families can read whenever they choose to,” and “able to grasp the direction of dying.” In contrast, other participants described points of attention of use as follows: “optimal timing to bring out,” “acceptance of families,” “direction as interdisciplinary team,” “confidential relationship between families and interdisciplinary team,” “disinclination among health care providers,” and “information volume of the booklet.” Thus, our results validated feasibility of the booklet. In conclusion, pediatric oncology specialists should provide their support of utilizing the booklet for families and assessing each family condition and advantage/attention of using the booklet.

Intervention and Implementation Studies on Integrated Care Pathway for End-of-Life Care in Long-term Care Facilities: A Scoping Review

Purpose: Integrated care pathway (ICP) is structured multidisciplinary care plan that aim to improve the quality of care. ICP could be effective in providing quality End-of-Life (EOL) care in long-term care facilities (LTCFs). However, the outcomes and components of ICP for EOL care in LTCFs are not clear. Methods: We conducted a scoping review to identify the outcomes and components. We searched electronic databases (PubMed, CINAHL, Cochrane Library, PsycINFO, Ichushi) and conducted an additional hand search for relevant journal articles related to EOL care. We searched intervention and implementation studies for ICP in EOL care in LTCFs. Results: Thirteen papers met the inclusion criteria. We identified the following components of ICP: documents, education regarding EOL care and ICP, support by experts, and regular conferences among care providers. The effects of ICP were reported as reductions in transfers to hospitals and improvement in staff confidence regarding EOL care. Conclusion: With reference to the components of ICP identified in this study, ICP should be developed based on the characteristics of LTCFs, and the effects of intervention or implementation studies using a more robust design should be examined.

Symptom Prevalence, Severity, and Distress Assessed by Memorial Symptom Assessment Scale (MSAS) in the General Population in Japan

<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>

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

<p>Objectives: This study aimed to describe the experiences of bereaved family members of cancer patients in terms of regret in relation to ending terminal treatment for the patient. Methods: We conducted a semi-structured qualitative interview of 37 bereaved family members regarding their decision-making and their psychological adjustment from the time they made the decision to terminate treatment. Interviews were analyzed using qualitative content analysis. Results: Approximately 40% of bereaved family members reported that they had some regrets about their decision. Regret contents were classified into 8 categories and diversified from 4 categories at the time of decision-making to 7 categories after the death. The reasons for regret were classified into 43 categories. Common factors that minimized regret included situations at the time when they made the decision, such as patient- and family-specific factors and relationship with the medical staff. In comparison, the common reasons for regret centered on factors related to the approach for decision-making, such as the process, options, as well as psychological coping and relationships with medical staff. Conclusion: The results suggest that regret in the bereaved could be modified by understanding the relationship between regret characteristics and psychological coping.</p>

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

<p>The aim of this study was to understand the use of complementary and alternative medicine (CAM) in cancer patients in Japan. This study was part of the Japan Hospice and Palliative care Evaluation 2016 (J-HOPE2016) Study. A multicenter questionnaire survey was conducted on a sample of bereaved family members of cancer patients who died at palliative care units. Data suggest that 54% of cancer patients use CAM. In comparison with a previous study in 2005 in Japan, categories of CAM vary widely; CAM previously included supplements mostly, but now exercise and mind and body therapy are also used. Most cancer patients use CAM without any harmful influence on their household economy and cancer treatment; however, in some patients, CAM incurs a large expense and a delay in starting cancer treatment. Therefore, it is important for medical staff and patients to have an opportunity to discuss CAM use. Multiple logistic regression analysis shows that CAM use is significantly associated with younger patients and highly educated families; moreover, there is a possibility that family members who use CAM have a high level of psychological distress. We must pay attention to the physical and the psychological aspects of cancer patients who use CAM and their families. Further studies are needed to investigate the use of each category of CAM, and to understand patients who use CAM and who die at home or in hospitals other than palliative care units.</p>

The Predictive Risk Factors for Bedsores of Terminal Cancer Patients Receiving Home-based Care

<p>Aim: To clarify the predictive risk factors for bedsores of terminal cancer patients receiving home-based care. Methods: A retrospective study was conducted involving 95 terminal cancer patients receiving home-based care, including people using services provided by home-visit care providers until death. Results: The numbers of patients with and without bedsores were 31 and 64, respectively. Bivariate analyses revealed that significant variables were the Ohura-Hotta scale (P=0.02), hyperactive delirium (P=0.005), contracture (P=0.008), and anemia (P=0.02). According to multivariable logistic analysis, significant variables were contracture (OR=16.55, P=0.0002) and hyperactive delirium (OR=4.22, P=0.008) as independent risk factors for bedsores. Discussion: For terminal cancer patients receiving home-based care, hyperactive delirium should also be considered as a predictive risk factor for bedsores.</p>