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.
Chronic obstructive pulmonary disease (COPD) is a leading cause of mortality. Since patients with severe COPD may experience exacerbations and eventually face mortality, advanced care planning (ACP) has been increasingly emphasized in the recent COPD guidelines. We conducted a multicenter, cross-sectional study to survey the current perspectives of Japanese COPD patients toward ACP. “High-risk” COPD patients and their attending physicians were consecutively recruited. The patients’ family configurations, understanding of COPD pathophysiology, current end-of-life care communication with physicians and family members, and preferences for invasive life-sustaining treatments including mechanical ventilation (MV) and cardiopulmonary resuscitation (CPR) were evaluated using a custom-made, structured, self-administered questionnaire. Attending physicians were also interviewed, and we evaluated the patient–physician agreement. Among the 224 eligible “high-risk” patients, 162 participated. Half of the physicians (54.4%) thought they had communicated detailed information; however, only 19.4% of the COPD patients thought the physicians did so ( score = 0.16). Less than 10% of patients wanted to receive invasive treatment (MV, 6.3% and CPR, 9.4%); interestingly, more than half marked their decision as “refer to the physician” (MV 42.5% and CPR 44.4%) or “refer to family” (MV, 13.8% and CPR, 14.4%). Patients with less knowledge of COPD were less likely to indicate that they had already made a decision. Although ACP is necessary to cope with severe COPD, Japanese “high-risk” COPD patients were unable to make a decision on their preferences for invasive treatments. Lack of disease knowledge and communication gaps between patients and physicians should be addressed as part of these patients’ care.
Background: Nursing students have limited opportunities to experience end-of-life care, so it is difficult for them to learn how to deliver it empirically. The use of simulations with standardized patients may be a way to provide realistic experience of end-of-life care for nursing students.
Objectives: The aim of this study was to evaluate the effectiveness of end-of-life care simulations with standardized patients in improving the knowledge, skill performance and self-confidence of undergraduate nursing students.
Design: Randomized controlled study.
Setting: Japanese university nursing school.
Participants: Thirty-eight students in the third year of the Bachelor's degree in nursing (simulation group = 20, control group = 18).
Methods: After randomization to a simulation or control group, participants in the simulation group participated in an end-of-life care simulation with standardized patients. The primary outcome of a change in the knowledge score was assessed using a knowledge questionnaire, skill performance by completing Objective Structured Clinical Evaluations, and self-confidence related to end-of-life care by self-reported questionnaires.
Results: The simulation group improved significantly in knowledge, skill performance in physical assessment and psychological care, and self-confidence related to end-of-life care. The results of the two-way analysis of variance showed a significant interaction between groups and time (p = 0.000). Analysis of the simple main effect showed a significant difference (p = 0.000) between groups after the end-of-life care simulation and a significant difference (p = 0.000) over time in the simulation group. There were large effects on knowledge improvement ( 2 = 0.372), physical assessment ( 2 = 0.619), psychological care skill performance ( 2 = 0.588), and self-confidence in both physical assessment ( 2 = 0.410) and psychological care ( 2 = 0.722).
Conclusions: End-of-life care simulation with standardized patients would be an effective strategy to train nursing students, who have limited opportunities to experience end-of-life
Cancer-related neuropathic pain (CNP) requires therapy involving multiple pharmaceuticals, including anticonvulsants and antidepressants; however, strong evidence to support this practice is limited. This study is a cross-sectional questionnaire-based survey. As the standard dose of adjuvant analgesics for CNP refractory to opioid therapy is not clear, the purpose of this study is to clarify the opinions of specialists about the usage of duloxetine and pregabalin for patients with CNP refractory to opioid therapy. Two hundred and eight certified palliative care specialists were surveyed and a total of 87 (42%) responses were analyzed. Twenty-five percent of specialists had considered increasing duloxetine doses up to 60 mg/day and 58% had considered increasing pregabalin doses up to 300 mg/day for CNP refractory to opioid therapy. However, 23% of the specialists succeeded in increasing duloxetine doses up to 60 mg/day and 17% in increasing pregabalin doses up to 300 mg/day, respectively.
This study aimed to develop a conceptual framework of the experience of persons who have lost a family member to suicide in Japan. The authors conducted in-depth interviews with 24 such family members. They conceptualized their experience as a process of regaining my new life. Initially, their lives were out of their hands, but gradually they learned striving skills and recuperative conditioning, and integrated the skills to regain their lives. Some participants eventually reached a state of living a redefined life. How individuals underwent this process varied. The authors identified two types of people dealing with this issue: dialoguers and mood changers.
This study aimed to determine the range of mean cumulative corticosteroid doses that could effectively palliate dyspnea in opioid-treated patients with terminal cancer and to investigate the demographic or biochemical factors predictive of corticosteroid responsiveness. To this end, responders and nonresponders were compared with regard to corticosteroid dose and whether they had initiated opioid use before or concomitantly with corticosteroid use. A logistic regression analysis was conducted to assess the impacts of demographic and biochemical factors on corticosteroid effectiveness. The final sample comprised 20 patients who satisfied the selection criteria. The responders accounted for 70% of the total sample (n = 14) and experienced the strongest effect with regard to dyspnea palliation at a mean cumulative dose equivalent to 64.4 mg prednisolone. However, no factors predictive of response were identified. In summary, this retrospective study identified effective corticosteroid doses for dyspnea alleviation in terminal cancer patients. Although our study sample was limited in size, the results support further prospective research.
PURPOSE: The purpose of our study was to clarify any difficulties or problems that exist in Japanese healthcare sites regarding the selection of death anxiety as a nursing diagnosis.
METHODS: This study was a qualitative, inductive research design. The semistructured interviews were conducted on the participants who were nurses and had 3 or more years of clinical experience in Japan.
RESULTS: Results showed four categories: "The Japanese have a culture of avoiding death," "It is extremely difficult to match diagnostic indicators and related factors with specific patient cases," "Other diagnoses exist that are effective and enable proactive intervention," and "The definition of death anxiety and the meaning of its diagnostic indicators are unintelligible."
DISCUSSION: It is thought that nursing diagnoses that reflect specific cultural backgrounds require definitions appropriate to each country and appropriate revisions to diagnostic indicators.
Gastrointestinal cancer is one of the most common causes of mortality globally. The present study examined the influence of cytokine genetic polymorphisms [interleukin (IL)-1B C-31T, IL-1RN VNTR, IL-6 C-634G, IL-8 T-251A, IL-10 T-819C and IL-10 A-1082G] on clinical outcomes in patients with gastrointestinal cancer in palliative care. A total of 59 patients with gastrointestinal cancer who were admitted to Iga City General Hospital were analyzed. Genotyping was conducted using a polymerase chain reaction with confronting two-pair primers. Patients with at least one IL-1RN 2 allele demonstrated a significantly better survival (P=0.0275) while those with IL-6-634 G/G demonstrated a worse survival (P=0.0024). Multivariate analyses using the Cox proportional hazard model revealed that those with at least one IL-1RN 2 allele, IL-6-634 G/G or IL-10-1082 A/G had a significantly elevated adjusted hazard ratio of 9.20 (P=0.014), 41.01 (P=0.001) or 6.49 (P=0.046), respectively, compared with those with each homozygous wild-type polymorphism. In addition, the evaluation of weight loss by genotype revealed the potential influence of IL-10 T-819C genotype (P=0.072). IL-1RN, IL-6 and IL-10 polymorphisms were associated with the survival of patients with gastrointestinal cancer, suggesting the clinical feasibility of genetic testing in patients with gastrointestinal cancer in palliative care.
Successful advance care planning relies heavily on effective communication between the elderly and their families, care managers, and social workers. However, care managers and social workers are often not adequately prepared to conduct such discussion. The aim of the present study was to identify the specific challenges facing Japanese care managers and social workers when involvement in advance care planning. Two focus group discussions were held between August and November 2017, involving eleven care managers and three social workers employed at two long-term care facilities actively pursuing advance care planning initiatives. Four main themes were identified, through content analysis, as barriers and facilitators: client readiness, communication, variation-rich client individuality, and difficult-to-explain end-of-life options. This study revealed the importance of building rapport with the residents and their families in order to assess their readiness to discuss care options and preferences. Obstacles included lack of medical knowledge of care managers and social workers. Study findings suggested that a multi-disciplinary team, facilitated by care managers and social workers, was fundamental to achieving the goals of advance care planning.