BACKGROUND: The clinical component of medical education for students and resident doctors in Japan occurs almost entirely in the hospital setting. Because of this inpatient focus, graduate medical education clinical training often fails to expose physicians-in-training to the challenges that patients may face in the outpatient or home setting. This is a descriptive study in which we explore what participating students and resident doctors learned through our brief home-based teaching experience.
METHODS: From June 2016 to December 2017, attending physicians on the internal medicine service had medical students and resident doctors accompany them on home care visits. Participants were selected by convenience sampling based on their rotation availability. After the home visit and the interactive discussion, the participants were expected to prepare a reflective journal on their experience and learning. Thematic analysis was applied, and key themes were developed based on Kolb's ELT (Experiential learning theory). Three months after completion of the experience, semi-structured interviews were individually conducted assessing participants' self-perceived changes.
RESULTS: Thirty-two medical students(10) or residents(22)participated in a home visit. Thirty of these learners were able to complete a reflective journal. Using thematic analysis, we identified 2 domains and 6 key themes from the participants' perceptions. Participants recognized the importance of patient-centered care, inter-professional collaboration of the home care team, and reconceptualized the meaning of medical practice and their professional identity as a doctor. Three month post-experience interviews were completed on 12 of the original 30 participants who completed the reflective journal. 2 domains and 6 key themes from the residents' experiences and perceptions were generated. The participants reported an increased attention to the daily lives and social situations of their hospitalized patients, and an extension of their focus beyond the clinical medical treatment of the patient.
CONCLUSION: The experience of a brief visit to a patient's home is a novel educational approach that may potentially provide medical students and resident doctors with opportunities to learn about out-of-hospital, patient-centered, home-based medical care.
Purpose: This study aimed to clarify the experiences of caregivers desiring to refuse life-prolonging treatment for their elderly parents at the end of life.
Methods: A semi-structured interview was performed for four family caregivers who wanted to refuse life-prolonging treatment suggested by the physicians.
Results: In this study, four caregivers who refused life-prolonging treatment suggested by the physicians for their elderly parents completed semi-structured interviews. The obtained data were analyzed in relation to the theme "Experiences of caregivers who desire to refuse life-prolonging treatment for their elderly parents at the end of life." As a result, 38 subcategories and 12 categories were extracted.
Conclusions: Participants in this study initially had a negative view of life-prolonging treatment. However, they agonized over the decision when they received conflicting advice from the physicians. The participants indicated that physicians' advice and attitudes complicated their decisions to reject life-prolonging treatment for their elderly parents.
Several reports have indicated that grief and mental health outcomes of people bereaved by suicide vary by their relationship to the deceased. Parents who have lost offspring experience higher levels of distress than those with other relationships to the deceased. However, there are limited studies investigating the experience of parental bereavement by suicide, and further research is needed. The present study aimed to clarify the differences in grief reactions between bereaved parents and those with other relationships to the deceased in Japan and explore a statistical model of adaptation to the loss. In total, 105 bereaved participants completed a questionnaire covering grief reaction, meaning reconstruction, mental health, social context, and demographic variables. Parents scored higher on several grief reaction items and lower in sense-making than those with other relationships. In addition, path analysis showed that sense-making acted as a moderator in the experience of loss of offspring and grief reaction.
BACKGROUND: The purpose of this study was to develop a scale capable of measuring comprehensive quality of life (QOL) outcomes based on the concept of a good death for patients with advanced cancer.
METHODS: We conducted an anonymous cross-sectional questionnaire survey on inpatients being treated at the Oncology Clinic in Saitama Medical University International Medical Center and seven palliative units throughout Japan.
RESULTS: A total of 405 patients with cancer participated in this study. Factor analysis of scores on the Comprehensive Quality of Life Outcome (CoQoLo) inventory revealed 28 items and the following 10 subscales: physical and psychological comfort; staying in a favourite place; maintaining hope and pleasure; good relationships with medical staff; not being a burden to others; good relationships with family; independence; environmental comfort; being respected as an individual; and having a fulfilling life. The total CoQoLo score was moderately correlated with satisfaction (r=0.34) and overall QOL (r=0.34), and moderately correlated with feelings of support and security regarding cancer care (r=0.44). Cronbach's α and the intraclass correlation coefficient of the total score were 0.90 and 0.79, respectively. No significant correlation was found between the total CoQoLo score and self-reported Eastern Cooperative Oncology Group performance status (r=-0.01).
CONCLUSIONS: These results suggest that the CoQoLo has sufficient reliability and validity and therefore provides an accurate measure of QOL outcomes independent of the general physical condition of the patient.
BACKGROUND: A child's death affects not only family members but also healthcare professionals involved in patient care. However, the education system for bereavement care in Japan is not systematically established, and care provided is based on healthcare professionals' experiences. We aimed to investigate pediatricians' recognition of and actual circumstances involved in bereavement care in Japan.
METHODS: A qualitative descriptive study was conducted at four facilities in Japan. Data collected with semi-structured interviews of 11 pediatricians were assessed using inductive qualitative analysis.
RESULTS: Pediatricians' recognition of bereavement care was categorized as follows: (1) developing relationships with families before a child's death is important in bereavement care; (2) after the child dies, family involvement is left to the doctor's discretion; (3) coping with a child's death myself through past experience is essential; (4) doctors involved in a child's death also experience mental burden; and (5) a system for the family's bereavement care must be established. Two categories were established according to actual circumstances involved in bereavement care: (1) attention must be given to the emotions of the families who lost a child; (2) doctors' involvement with bereaved families depends on doctors' recognition and expertise.
CONCLUSION: Japanese pediatricians provided bereavement care to families who lost their children in a non-systemized manner. This is necessitates improvement of the self-care of healthcare professionals for grief by improving bereavement care-related education. Additionally, healthcare professionals must be trained, and a national-level provision system must be established to provide high-quality bereavement care for families who lose a child.
OBJECTIVES: Well-being typically exhibits pronounced deteriorations with approaching death, with sizeable interindividual variations in levels and changes. It is less well understood how psychosocial factors contribute to these individual differences. We examined whether and how social integration is associated with terminal trajectories of well-being, indexed as life satisfaction.
METHOD: Data were drawn from 1,119 deceased Japanese participants of a 15-year longitudinal study (age at death: M = 79.2 years; SD = 7.7 years; 43.1% women). Life satisfaction, structural and functional features of social integration (e.g., frequency of contact with family and nonfamily, and perceived overall support, respectively), socio-demographic characteristics, and physical function were assessed.
RESULTS: Social integration predicted individual differences in terminal decline in life satisfaction, after controlling for age at death, gender, education, and physical function: More diverse social relationships were associated with higher levels of life satisfaction at 1 year before death. Additionally, individuals who exhibited more decline in social participation and perceived less support showed more pronounced decline with increasing proximity of death.
DISCUSSION: This study suggests that social integration plays a protective role in late-life well-being, and that sustaining an active social life and supportive social interactions may help mitigate terminal decline in well-being.
Background: Advance directives (ADs) are seldom discussed between primary care physicians (PCPs) and their patients, especially those with noncancer diseases. The aim was to identify the factors associated with discussing AD by noncancer patients with their physicians.
Methods: This cross-sectional study was conducted in a hospital or clinic from October to December 2017. Physicians chose eligible noncancer patients aged 20 years or older to respond to an anonymous self-completed questionnaire inquiring about the objective variable "I want to discuss AD with my doctor," as well as basic characteristics, and facilitators and barriers to discussing AD identified in previous studies. The physicians responded to a survey comprising the Palliative Performance Scale (PPS) and inquiring about the disease category for each patient. Data were analyzed using binomial logistic regression analysis.
Results: A total of 270 patients (valid response rate, 79.6%) were included. Multivariate analysis identified a period of visit to the study site = 3 years (odds ratio [OR], 2.07; 95% confidence interval [CI], 1.05-4.10), physicians who are very good at taking care of patients’ disease (OR, 12.68; 95% CI, 1.12-143.22), and patients’ worry about their quality of life (QOL) in the future (OR, 2.69; 95% CI, 1.30-5.57) as facilitators for discussing AD with physicians, and PPS = 90 (OR, 0.51; 95% CI, 0.26-0.98) as a barrier.
Conclusions: Our study indicates that patients' future QOL concerns, a long period of visit to a hospital, and the presence of physical symptoms were associated with the willingness of noncancer patients to discuss AD with PCPs.
CONTEXT: Patient preferences influence end-of-life (EOL) care which patients receive. However, preferences regarding EOL care among adolescent and young adult (AYA) cancer population remain unclear.
OBJECTIVES: The objective of the study was to evaluate preferences regarding EOL care among AYA cancer population.
METHODS: We evaluated preferences regarding EOL care as a part of a comprehensive multicenter questionnaire study investigating the experience and needs of Japanese AYA cancer population.
RESULTS: A total of 349 AYA cancer population (213 AYA cancer patients and 136 AYA cancer survivors) were evaluated. Eighteen six percent (296/344), 53% (180/338), 88% (301/341) and 61% (207/342) of participants with valid response preferred to have prognostic disclosure, receive palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity, actively use palliative care and stay home at EOL, respectively. In multivariate analysis, the preference regarding prognostic disclosure was associated positively with no child status (OR = 3.05, p = 0.003) and negatively with history of chemotherapy (OR = 0.23, p = 0.009), the preference regarding palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity was associated positively with status under active cancer treatment (OR = 1.74, p = 0.03) and the preference of staying home at EOL was positively associated with anxiety (OR = 1.72, p = 0.04).
CONCLUSION: This study elucidated preferences regarding EOL care among Japanese AYA cancer population. These findings may help health care practitioners to have better understanding of preferences regarding EOL care among this population.
BACKGROUND: Gastrointestinal symptoms, including nausea, vomiting, bowel obstruction, ascites, constipation, and anorexia, are common and often refractory in advanced cancer patients. The palliation of gastrointestinal symptoms is important in improving the quality of life of cancer patients, as well as that of their families and caregivers. Currently published clinical guidelines for the management of gastrointestinal symptoms in cancer patients do not comprehensively cover the topics or are not based on a formal process for the development of clinical guidelines.
METHODS: The Japanese Society for Palliative Medicine (JSPM) developed comprehensive clinical guidelines for the management of gastrointestinal symptoms in cancer patients after a formal guideline development process.
RESULTS: This article summarizes the recommendations along with their rationale and a short summary of the development process of the JSPM gastrointestinal symptom management guidelines. We established 31 recommendations, all of which are based on the best available evidence and agreement of expert taskforce members.
DISCUSSION: Future clinical studies and continuous guideline updates are required to improve gastrointestinal symptom management in cancer patients.
OBJECTIVES: About 10% of those who lose a loved one in hospice or palliative care settings will experience a mental health condition characterized by severe, prolonged grief responses. Criteria for this condition have evolved; we refer to this condition as Complicated Grief (CG) because it is one of the more common names. While there are some indications of associations between CG and poor physical health, explorations of the association between CG and pain is limited. The main objective of this study was to explore whether pain levels are higher in those with CG than those without, using a large population-based samples of Japanese older adults.
METHOD: The study analyzed data from the Japan HOspice and Palliative care Evaluation (J-HOPE) study, a cross sectional study conducted in 2008 that examined the experiences and outcomes among adults throughout Japan who had lost a loved one within a palliative department or hospice setting, via self-report survey. We examined a subsample sample of 324 individuals aged 50 and above who completed a measure of CG.
RESULTS: Family members with high pain group had statistically significantly higher CG symptoms than those with low pain group (M = 66.95 vs. M = 52.05), an association which remained when controlling for demographic and loss-related factors.
CONCLUSION: We found preliminary evidence of an association between CG symptoms and pain, which should be explored in additional samples. Should this finding be replicated, the mechanism of this association could be explored and treatment could potentially address both CG and pain.
BACKGROUND: The aim of this study was to assess the clinical outcomes of palliative interventions for patients with incurable locally advanced or metastatic esophageal carcinoma.
METHODS: A total of 131 patients with thoracic esophageal carcinoma who underwent palliative interventions were enrolled. Insertion of a self-expandable metallic stent (SEMS), tube enterostomy for enteral nutrition (EN), and palliative esophagectomy (PE) were performed in 38, 65, and 28 patients, respectively. The clinicopathological characteristics and clinical outcomes of each group were retrospectively reviewed.
RESULTS: Patients in the EN group frequently received chemoradiotherapy (P < 0.01). SEMS insertion, but not PE or EN, improved the mean dysphagia score after the intervention (P < 0.01). For the SEMS, EN, and PE groups, the occurrence of intervention-related complications was 31.6, 10.8, and 96.4%, respectively, the median survival time was 88, 208, and 226 days (P < 0.01), and the mean ratio of duration of home care to survival time was 28.9, 38.5, and 39.6% (P = 0.95).
CONCLUSIONS: SEMS insertion effectively relieved obstructive symptoms, but had no survival benefit. Tube enterostomy showed a low complication rate and has the potential to improve survival in combination with additional treatment, with no palliation of obstructive symptoms.
AIMS: Total radiation dose does not predict pain response in conventionally fractionated radiotherapy for bone metastases. By contrast, in radiotherapy for solid painful tumours other than bone metastases, it is unknown whether there is a dose-response relationship. We sought to determine whether a higher total radiation dose predicted a higher pain response rate in palliative radiotherapy for non-bone painful lesions.
MATERIALS AND METHODS: We carried out a secondary analysis of a prospective observational study. For patients scheduled for radiotherapy for painful tumours, Brief Pain Inventory data were collected at baseline and at 1, 2 and 3 months after the start of radiotherapy. The predictive value of total radiation dose was evaluated using the Fine-Gray model, in which death without a pain response was treated as a competing risk.
RESULTS: Of the 203 patients with solid painful tumours, 78 (38%) had non-bone painful lesions. There were no significant differences in pain response rate, the rate of the predominance of non-index pain or reductions in pain interference scores between the patients with non-bone lesions and those with bone metastases. Multivariable analysis showed that total radiation dose was an independent significant predictor of pain response in patients with non-bone painful lesions. This result was not robust to sensitivity analysis with Cox regression analysis.
CONCLUSIONS: Higher total radiation dose seemed to be associated with a higher rate of pain response in patients with non-bone painful lesions. However, this finding was not robust to sensitivity analysis. Dose-response relationship should be investigated in clinical trials enrolling patients with these kinds of painful tumour.
This study develops and examines the validity and reliability of 2 scales, respectively, for evaluating nursing care and the experience of difficulties providing nursing care for dying patients with cancer and their families. A cross-sectional anonymous questionnaire was administered to nursing staff caring for dying patients with cancer and their families in 4 general hospitals and a university hospital in Japan. The instruments assessed were the Nursing Care Scale for Dying Patients and Their Families (NCD) and the Nurse’s Difficulty Scale for Dying Patients and Their Families (NDD). Of the 497 questionnaires sent to nurses, 401 responses (80%) were analyzed. Factor analyses revealed that the NCD and NDD consisted of 12 items with 4 subscales: "symptom management," "reassessment of current treatment and nursing care," "explanation to family," and "respect for the patient and family’s dignity before and after death." These scales had sufficient convergent and discriminative validity, sufficient internal consistency (alpha of subscales: NCD, 0.71-0.87; NDD, 0.74-0.93), and sufficient test-retest reliability (intraclass correlation coefficient of subscales: NCD, 0.59-0.81; NDD, 0.67-0.82) to be used as self-assessments and evaluation tools in education programs to improve the quality of nursing care for the dying patients and their families.
While people are still alive, we owe them respect. Yet what, if anything, do we owe the newly dead? This question is an urgent practical concern for aged societies, because older people die at higher rates than any other age group. One novel way in which Japan, the frontrunner of aged societies, meets its need to accommodate high numbers of newly dead is itai hoteru or corpse hotels. Itai hoteru offer families a way to wait for space in over-crowded crematoriums while affording an environment conducive to grieving. Drawing on conversations with itai hoteru employees, we delineate the values this contemporary death practice expresses and show how these values comprise part of the broader idea of a good death. A good death implies duties on both sides of death's divide: to both the dying and the newly dead.
This study develops and examines the validity and reliability of 2 scales, respectively, for evaluating nursing care and the experience of difficulties providing nursing care for dying patients with cancer and their families. A cross-sectional anonymous questionnaire was administered to nursing staff caring for dying patients with cancer and their families in 4 general hospitals and a university hospital in Japan. The instruments assessed were the Nursing Care Scale for Dying Patients and Their Families (NCD) and the Nurse’s Difficulty Scale for Dying Patients and Their Families (NDD). Of the 497 questionnaires sent to nurses, 401 responses (80%) were analyzed. Factor analyses revealed that the NCD and NDD consisted of 12 items with 4 subscales: "symptom management," "reassessment of current treatment and nursing care," "explanation to family," and "respect for the patient and family’s dignity before and after death." These scales had sufficient convergent and discriminative validity, sufficient internal consistency (a of subscales: NCD, 0.71-0.87; NDD, 0.74-0.93), and sufficient test-retest reliability (intraclass correlation coefficient of subscales: NCD, 0.59-0.81; NDD, 0.67-0.82) to be used as self-assessments and evaluation tools in education programs to improve the quality of nursing care for the dying patients and their families.
End-of-life (EOL) care conferences have an important role in promoting EOL care in nursing homes. However, the details of the conferences remain poorly understood. A Japanese prefecture-wide survey was conducted to investigate the factors involved in such conferences that contribute to an increase in the amount of EOL care. One hundred fifty-three nursing homes performed the conferences. The outcome was the amount of EOL care provided in nursing homes after adjusting for the facility beds in 2014. We investigated the factors of staff experience with EOL care, frequency of the conferences, years the conferences were conducted, review conferences after EOL care, and professional participants in the conferences. The multivariate analysis revealed significant associations between EOL care in nursing homes and nurses' experience with EOL care (adjusted ß coefficient 2.9, 95% confidence interval (CI) 0.52 ~ 5.22, p = 0.017), more than 5 years of continuous conferences (adjusted ß coefficient 3.8, 95% CI 0.46 ~ 7.05, p = 0.026), and family participation (adjusted ßcoefficient 4.0, 95% CI 7.5 ~ 0.48, p = 0.026). In conclusion, the continuation of conferences and enrollment of the nurse with experience in EOL care may promote EOL care in nursing homes, while family enrollment in conferences may decrease EOL care in nursing homes. EOL care conferences in nursing homes should be continuously performed by staff, with an experienced nurse undertaking the task of information sharing before discussing EOL care with the patients' families.
Context: Although palliative care is rapidly being disseminated throughout Japan as a result of government policy, a systematic syllabus of palliative medicine for physicians has not been developed.
Aims: This study aimed to develop a Japanese national consensus syllabus of palliative medicine for physicians.
Design: We used a modified Delphi method to develop the consensus syllabus.
Methods and Setting: We created a Delphi panel by selecting 20 expert eligible panelists consisting of Diplomate or Faculty of the Specialty Board of Palliative Medicine and certified by the Japanese Society for Palliative Medicine. We inducted external reviewers from 11 palliative care-related organizations.
Results: Among 20 experts surveyed, 20 (100%) responded over all rounds. Ten (50%) participated in a panel meeting. In the first round, 179 of 179 (100%) learning objectives were judged to be appropriate and 5 of 179 (3%) learning objectives were judged to be too difficult. In the panel meeting, 25 learning objectives were excluded, three new learning objectives were added, and 15 learning objectives were reworded. In the second round, 18 of 18 (100%) learning objectives were judged to be appropriate. The final version of the syllabus developed consists of 157 specific behavioural objectives and 22 general instructional objectives across 22 courses.
Conclusions: We have developed the first national consensus syllabus of palliative medicine for physicians in Japan. Based on this syllabus, a training program on palliative medicine will be established by training facilities in Japan, and physicians will be able to practice specific palliative care.
Coping affects somatic and psychological outcomes. This article explores narratives in a book, Kamikaze Diaries: Reflections of Japanese Student Soldiers, which report on the ways of coping used by each kamikaze participant before and during military service. The purpose of this study is to observe the possibility of a trend in coping strategies and consider how these trends inform us about other populations facing imminent death. This study analyzed data and extracted meaning from the narratives in the book (thematic content analysis). Within the thematic content analysis, the Ways of Coping scale was used, which describes the coping strategies people use when facing problems. The most frequently used coping strategies before they entered the military were "Accept Responsibility," "Endurance/Obedience/Effort," and "Self-Control," while once in the military, they were "Accept Responsibility" and "Endurance/Obedience/Effort." All the coping strategies used by kamikaze pilots appeared to focus on the passive self, which may be the type of coping in other populations facing death.
OBJECTIVE: To identify factors related to decisional conflict among surrogate decision makers for home medical care (HMC) patients.
DESIGN: Prospective Cohort Study.
SETTING/SUBJECTS: For older patients receiving HMC from four different primary care clinics in Japan from January 2016 to June 2017, we studied the family member with the main potential for surrogate decision making.
MEASUREMENTS: At the baseline, surrogates filled out a baseline questionnaire on their characteristics and decision readiness, while the attending doctors provided information about the patients' characteristics. Patient-and-surrogate pairs were tracked for up to six months after the baseline or for three months in the case of death, hospitalization, or admittance to a nursing home. After this tracking, surrogates filled out a follow-up questionnaire on their decision-making experiences, including decisional conflict.
RESULTS: Of the original 159 patient-and-surrogate pairs, 121 (76.1%) responded to the follow-up questionnaire. During the follow-up period, 32 patients (26.4% of the patients followed up) died and 69 (57.0%) experienced decision making. Among surrogates who made decisions, the mean score of decisional conflict was 36.2 (standard deviation 14.7), and 43.5% were above the threshold relating to decision delay. Anticipatory guidance and discussion on the patient's care goals at the beginning of HMC were the two variables significantly associated with less decisional conflict of surrogates.
CONCLUSIONS: Families felt less conflict with surrogate decision making if they had participated in previous discussions with doctors regarding the patients' care goals. Early-stage anticipatory guidance and discussion are a good opportunity for families to prepare for surrogate decision making.
Introduction: The early integration of palliative care into standard cancer treatment has become a global standard. The Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education (PEACE) has been conducted in Japan, and previous studies have reported that the PEACE workshop was able to improve various palliative care skills of participants. However, whether or not the effects of the program are long-lasting and if the program consequently changed physicians' practice with regard to lung cancer patients have been unclear.
Methods: Web-based surveys, including the palliative care knowledge test (PEACE-Q), the Palliative Care self-reported Practice Scale (PCPS), and the Palliative Care Difficulties Scale (PCDS), were conducted among lung cancer physicians in Japan. The differences in the survey results between participants and non-participants of the PEACE workshop were examined. Results: Among 923 respondents (455 respiratory physicians, 345 pulmonary surgeons, and 123 others), 519 had participated in the PEACE workshop. The total PEACE-Q score was significantly higher in the PEACE workshop participants than in non-participants (28.0 versus 24.5, p<0.0001). The score was significantly higher in respiratory physicians than in pulmonary surgeons (27.4 versus 25.5). The total PCPS and PCDS scores were also significantly better in workshop participants than in non-participants (71.8 versus 67.1 and 34.3 versus 36.9, respectively), although some domains of PCDS were similar between the groups. Conclusion: The PEACE program improved the knowledge and practices with regard to palliative care and resolved difficulties associated therewith among lung cancer physicians. In regions where palliative care specialists are insufficient, such educational programs may be effective.