Yoshiyuki Kizawa

Existential concerns of terminally ill cancer patients receiving specialized palliative care in Japan

BackgroundAlthough alleviation of existential distress is important for terminally ill cancer patients, the concept of existential distress has not been fully understood. The aim of this study was to categorize existential concerns of Japanese terminally ill cancer patients and explore care strategies based on the categorizations.MethodsA multicenter cross-sectional study in 88 terminally ill cancer patients receiving specialized inpatient palliative care was performed. The nurses explored patient existential concerns by asking several key questions, and recorded the answers that they considered typically described the patients’ concerns. All statements recorded by the nurses were analyzed using content analysis methods.ResultsA total of 89 statements were subjected to analysis. The categories and their prevalence were: relationship-related concerns (22%; isolation, concerns about family preparation, conflicts in relationship), loss of control (16%; physical control, cognitive control, control over future), burden on others (4.5%), loss of continuity (10%; loss of role, loss of enjoyable activity, loss of being oneself), uncompleted life task (6.8%), hope/hopelessness (17%), and acceptance/preparation (25%).ConclusionsExistential concerns of Japanese terminally ill cancer patients were categorized as relationship-related concerns, loss of control, burden on others, loss of continuity, uncompleted life task, hope/hopelessness, and acceptance/preparation. These themes seemed to encompass universal human suffering beyond cultural differences, and this conceptualization may contribute to the development of effective therapeutic interventions to alleviate existential distress.

Effects of a programme of interventions on regional comprehensive palliative care for patients with cancer: a mixed-methods study

BACKGROUND Improvement of palliative care is an important public health issue, but knowledge about how to deliver palliative care throughout a region remains inadequate. We used surveys and in-depth interviews to assess changes in the quality of palliative care after regional interventions and to gain insights for improvement of palliative care at a regional level. METHODS In this mixed-methods study, a comprehensive programme of interventions for regional palliative care for patients with cancer was implemented from April 1, 2008, to March 31, 2011 in Tsuruoka, Kashiwa, Hamamatsu, and Nagasaki in Japan. Interventions included education, specialist support, and networking. We surveyed patients, bereaved family members, physicians, and nurses before and after the interventions were introduced. We also did qualitative interviews with health-care professionals after the interventions were introduced. Primary endpoints were numbers of home deaths, coverage of specialist services, and patient-reported and family-reported qualities of care. This trial is registered with UMIN Clinical Trial Registry, Japan (UMIN000001274). FINDINGS 859 patients, 1110 bereaved family members, 911 physicians, and 2378 nurses provided analysable preintervention surveys; 857 patients, 1137 bereaved family members, 706 physicians, and 2236 nurses provided analysable postintervention surveys. Proportions of home deaths increased significantly, from 348 of 5147 (6.76%) before the intervention programme to 581 of 5546 (10.48%) after the intervention programme (p<0.0001). Furthermore, 194 of 221 (87.78%) family members of patients who died at home answered that these patients had wanted to die at home. The ratio of patients who received palliative care services to all patients who died of cancer increased significantly (from 0.31 to 0.50; p<0.0001). The patient-reported (effect size 0.14; adjusted p=0.0027) and family-reported (0.23; p<0.0001) qualities of care were significantly better after interventions than before interventions. Physician-reported and nurse-reported difficulties decreased significantly after the introduction of the interventions. Qualitative interviews showed improved communication and cooperation between health-care professionals because of greater opportunities for interactions at various levels. INTERPRETATION A regional programme of interventions could improve the quality of palliative care. Improvement of communication between health-care professionals is key to improvement of services. FUNDING Third Term Comprehensive Control Research for Cancer Health and Labor Sciences Research Grants of the Ministry of Health, Labour and Welfare of Japan.

Reliability and validity of the Japanese version of the Support Team Assessment Schedule (STAS-J)

OBJECTIVE The aim of this project was to develop an appropriate and valid instrument for assessment by medical professionals in Japanese palliative care settings. METHODS We developed a Japanese version of the Support Team Assessment Schedule (STAS-J), using a back translation method, and tested its reliability and validity. In the reliability study, 16 nurses and a physician who work in a palliative care unit evaluated 10 hypothetical cases twice at 3-month intervals. For the validity study, external researchers interviewed 50 patients with matignancy and their families and compared the results with ratings by the nurses in the palliative care unit. RESULTS Our results with hypothetical cases were: interrater reliability weighted kappa = 0.53-0.77 and intrarater reliability weighted kappa = 0.64-0.85. In the validity study comparing nurse evaluations and the results of interviews with patients and families, complete agreement was 36-70%, and close agreement (+/-1) was 74-100%. As a whole, weighted kappa were low: between -0.07 and 0.51. Our results were similar to those in the United Kingdom and Canada. SIGNIFICANCE OF RESULTS Although this research was conducted under methodologically limited conditions, we concluded that the STAS-J is a reliable tool and its validity is acceptable. The STAS-J should become a valuable tool, not only for daily clinical use, but also for research.

Concerns of family members of patients receiving palliative sedation therapy

PurposeSymptomatic sedation is often required in terminally ill cancer patients and could cause significant distress to their families. The aim of this study was to gather vivid family descriptions about their experiences in palliative sedation therapy.MethodsThis report is an additional analysis of a multicenter questionnaire survey. We performed content analysis on 48 statements described by 185 bereaved family members of patients who received palliative sedation therapy.ResultsFamily members reported guilt, helplessness, and physical and emotional exhaustion when patients received palliative sedation therapy. They were concerned about whether sedated patients experienced distress, wished to know that the maximum efforts had been made, wished to prepare for patient death, wished to tell important things to patients before sedation, wished to understand patients’ suffering, and wanted medical professionals to treat patients with dignity.ConclusionsTo alleviate family distress, clinicians should understand families’ emotional distress, ensure that unconscious patients feel no distress, reassure family members that the symptoms are truly refractory despite maximum efforts for symptom relief, give information and coordinate the situation to enable families to prepare for patient death and to tell important things to patients before sedation, help families to share patients’ suffering, and treat patients the same as when they remained conscious.

Multicenter Prospective Study on Efficacy and Safety of Octreotide for Inoperable Malignant Bowel Obstruction

OBJECTIVE The aim of this study was to evaluate the efficacy and safety of octreotide for malignant bowel obstruction in a multicenter study. METHODS Terminally ill patients diagnosed with inoperable malignant bowel obstruction were treated with octreotide 300 microg/day. The primary endpoint was the overall improvement rate of subjective abdominal symptoms. The degrees of nausea, vomiting, abdominal pain, distension, anorexia, fatigue, thirst and overall quality of life were evaluated by the self-rating scores selected from the MD Anderson Symptoms Inventory and Kuriharas Face Scale. RESULTS Forty-nine patients were enrolled in the study, and 46 patients received study treatment, including 17 gastric, 13 colorectal, 7 ovarian and other cancers. The median survival time was 25 days. The number of vomiting episodes significantly correlated with the MD Anderson Symptoms Inventory nausea and vomiting scores (P< 0.001) before octreotide treatment. Of 43 patients evaluable for efficacy, the scores of all the MD Anderson Symptoms Inventory items except abdominal pain and the number of vomiting episodes improved during the first 4 days of octreotide treatment (P< 0.0062). The MD Anderson Symptoms Inventory scores were decreased in 59-72% of patients, and overall quality-of-life scores improved in 56% of patients. No serious adverse events were observed. CONCLUSIONS The high improvement rate in abdominal symptoms suggested the efficacy of octreotide in terminally ill patients with malignant bowel obstruction.

Inter-rater reliability of proxy simple symptom assessment scale between physician and nurse: a hospital-based palliative care team setting

Symptom management in palliative care requires reliable symptom assessment. We assessed the inter-rater reliability of a simple proxy symptom-assessment scale using the Japanese version of the Support Team Assessment Schedule (STAS-J) in a hospital-based palliative care team (HPCT) setting. By doing this, we assessed symptoms in a series of consecutive patients at two university hospitals with certified HPCTs within 2 days of referral and 7 days after. A physician and nurse assessed 20 symptoms. In total, 120 patients were assessed within 2 days of referral and 92 patients at 7 days after referral. As a result, we find that the intra-class correlation coefficients were 0.02-0.89 at referral and 0.20-0.92 at 7 days after. The perfect concordance rates were 37-89% at referral and 53-96% at 7 days after. The perfect or +/-1 concordance rates were 71-97% at referral and 73-100% at 7 days after. In conclusion, the symptom item of the STAS-J had high inter-rater reliability.

Palliative care in Japan: a review focusing on care delivery system.

Purpose of reviewProviding palliative care in Japan is one of the most important health issues. Understanding palliative care delivery systems of other countries is useful when developing and modifying palliative care systems worldwide. This review summarizes the current status of palliative care in Japan, focusing on the structure and process development. Recent findingsPalliative care units and hospital palliative care consultation teams are the two main specialized palliative care services in Japan. The number of palliative care units is 215 (involved in 8.4% of all cancer deaths), and there are approximately 500 hospital palliative care teams. Conversely, specialized home care services are one of the most undeveloped areas in Japan. However, the government has been trying to develop more efficient home care services through modifying laws, healthcare systems, and multiple educational and cooperative projects. The numbers of palliative care specialists are increasing across all disciplines: cancer pain nurses (1365), palliative care nurses (1100), palliative care physicians (646), and palliative care pharmacists (238). Postgraduate education for physicians is performed via the special nationwide efforts of the Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education (PEACE) project – a 2-day program adopting a trainer–trainee strategy. Over 30 000 physicians have participated in the PEACE program. A total of 1298 and 544 physicians have completed a trainer course for palliative medicine and psycho-oncology, respectively. Multiple structure and process evaluation, bereaved family surveys in palliative care units, and patient and family evaluation in the regional palliative care program indicate many improvements. SummaryPalliative care in Japan has progressed rapidly, and the Cancer Control Act has played a very important role in developing palliative medicine. Challenges include developing a structure for palliative care in the community or regional palliative care programs, establishing a method to measure and improve the quality of palliative care at a national level, developing evidence-based medicine and policy making, and palliative care for the noncancerous population.

Development of a nationwide consensus syllabus of palliative medicine for undergraduate medical education in Japan: A modified Delphi method

Background: There is currently no consensus syllabus of palliative medicine for undergraduate medical education in Japan, although the Cancer Control Act proposed in 2007 covers the dissemination of palliative care. Aim: To develop a nationwide consensus syllabus of palliative medicine for undergraduate medical education in Japan using a modified Delphi method. Design: We adopted the following three-step method: (1) a workshop to produce the draft syllabus; (2) a survey-based provisional syllabus; (3) Delphi rounds and a panel meeting (modified Delphi method) to produce the working syllabus. Educators in charge of palliative medicine from 63% of the medical schools in Japan collaborated to develop a survey-based provisional syllabus before the Delphi rounds. A panel of 32 people was then formed for the modified Delphi rounds comprising 28 educators and experts in palliative medicine, one cancer survivor, one bereaved family member, and two medical students. Results: The final consensus syllabus consists of 115 learning objectives across seven sections as follows: basic principles; disease process and comprehensive assessment; symptom management; psychosocial care; cultural, religious, and spiritual issues; ethical issues; and legal frameworks. Learning objectives were categorized as essential or desirable (essential: 66; desirable: 49). Conclusions: A consensus syllabus of palliative medicine for undergraduate medical education was developed using a clear and innovative methodology. The final consensus syllabus will be made available for further dissemination of palliative care education throughout the country.

The Japan HOspice and Palliative Care Evaluation Study 3: Study Design, Characteristics of Participants and Participating Institutions, and Response Rates:

This article describes the whole picture of Japan HOspice and Palliative Care Evaluation Study 3 (J-HOPE3 Study) including study design and demographic data. The aims of the J-HOPE3 study were to (1) evaluate the process, structure, and outcome of palliative care in the following care settings: acute hospitals, inpatient hospice/palliative care units (PCUs), and home hospice services; (2) examine bereaved family members’ self-reported psychosocial conditions, such as grief and depression, as bereavement outcomes; (3) provide data to ensure and improve the quality of care provided by participating institutions through feedback concerning results for each institution; and (4) perform additional studies to explore specific clinical research questions. We conducted a cross-sectional, anonymous, self-report questionnaire survey involving patients’ bereaved family members in 20 acute hospitals, 133 PCUs, and 22 home hospice services between May and July 2014. Two types of questionnaires were used: main and specific studies questionnaires. The questionnaire was sent to totally 13 584, and 10 157 returned the questionnaire. The analysis included 9126 family members’ questionnaires from acute hospitals, PCUs, and home hospice services. Respondents’ average age was 61.6 years, 55% were women, and 40% had been married to the deceased. With respect to the characteristics of participating institutions, most institutions did not have religious affiliations, and most PCUs and home hospice services provided bereavement care. These results of the analysis of common and additional questionnaires could play an important role in clinical settings, quality improvement, research, and public accountability.

Eating-related distress and need for nutritional support of families of advanced cancer patients: a nationwide survey of bereaved family members.

A number of advanced cancer patients are suffering from physical and psychosocial burdens because of cancer cachexia, and these burdens also greatly impact on their family members and relationships between patients and family members. It is necessary to consider the psychosocial impact of cancer cachexia on family members of advanced cancer patients.