Satoru Tsuneto

The Japan HOspice and Palliative Care Evaluation Study (J-HOPE Study): Study Design and Characteristics of Participating Institutions:

This article describes the study design and background data of participating institutions in the Japan HOspice and Palliative care Evaluation (J-HOPE) study. The J-HOPE study is a large nationwide survey about the dying experience of cancer patients. The primary aim of this article is to describe the design of the J-HOPE study for the bereaved family members of Japanese inpatient palliative care units and home hospices. Secondly, the aim was to describe characteristics of participating institutions. The authors conducted a cross-sectional questionnaire survey in 2007. One hundred Japanese inpatient palliative care units and 14 home hospices participated. The questionnaires were sent to 7955 bereaved family members of the Japanese inpatient palliative care units and 447 of the home hospices. The authors describe the structure of the Japanese inpatient palliative care units and home hospices, including type of staff, architectural structure, number of patients, and death. In addition, the authors describe available treatments at the Japanese inpatient palliative care units and home hospices.

Late Referrals to Palliative Care Units in Japan: Nationwide Follow-Up Survey and Effects of Palliative Care Team Involvement After the Cancer Control Act

Referral to palliative care units tends to be delayed. In Japan, the Cancer Control Act was established in 2006 to improve the quality of life of cancer patients by facilitating greater access to specialized palliative care services. The primary aims of this study were to clarify the family-perceived appropriateness of the timing of referral to palliative care units after the Cancer Control Act, and to determine the effects of the involvement of the palliative care team on the family-perceived referral timing. An additional aim of this study was to clarify the family-perceived usefulness of the palliative care team. A multicenter questionnaire survey was conducted on a sample of 661 bereaved family members of cancer patents who were admitted to palliative care units in Japan. A total of 451 responses were analyzed (response rate: 68%). Half of the bereaved family members regarded the timing of referrals to palliative care units as late or too late: too late (25%, n=114), late (22%, n=97), appropriate (47%, n=212), early (2.4%, n=11), and very early (1.8%, n=8). Among 228 families who reported that patients had commented on the timing of referrals, about half reported that the patients said the timing of referral was late or too late: too late (23%, n=52), late (21%, n=49), appropriate (48%, n=110), early (4.4%, n=10), and very early (3.1%, n=7). The families of patients with a palliative care team (n=191) tended to report less frequently that they believed the referral timing to be late or too late (43% vs. 51%, P=0.073); they also reported significantly less frequently that the patients said that the referral timing was late or too late (36% vs. 52%, P=0.037). The percentages of families who evaluated the palliative care team as useful or very useful were: 93% (symptom control), 90% (emotional support), 92% (family support), and 87% (care coordination). Half of the Japanese bereaved families of patients admitted to palliative care units regarded the timing of referrals as late or too late, and the rates identified in the survey were similar to those recorded before the Cancer Control Act. Involvement of the palliative care team, however, significantly correlated with lower family- and patient-perceived late referrals, and palliative care team activity was generally perceived as useful by the bereaved family members. Further dissemination of palliative care teams could contribute to better access to palliative care units and quality palliative care throughout the country.

Why are bereaved family members dissatisfied with specialised inpatient palliative care service? A nationwide qualitative study:

Background: In order to improve the quality of palliative care, we can learn from bereaved families who were dissatisfied with the care they received. The primary aim of this study was to explore why bereaved families were dissatisfied with specialized inpatient palliative care. Methods: This qualitative study formed part of a nationwide questionnaire survey administered to 1225 bereaved family members of cancer patients who died in certified palliative care units in Japan. The participants were 22 consecutive family members who reported a greater need for improvement in care. Data were analysed by the content analysis. Results: The reasons that the bereaved families listed are classified into 27 categories and seven themes: (1) lack of perceived support for maintaining hope; (2) lack of perceived respect of individuality, especially in attitudes toward death; (3) perceived poor quality of care, especially psychological care, not being treated with dignity and inadequate explanation from physicians; (4) inadequate staffing and equipment, especially physician availability; (5) unavailability of timely administration; (6) lack of accurate information about palliative care units; and (7) family’s practical and economic burden. Conclusions: This study identified the multiple sources of dissatisfaction with specialized inpatient palliative care for bereaved families. These findings could be useful in developing a more desirable system of specialised inpatient palliative care.

Care for Imminently Dying Cancer Patients: Family Members' Experiences and Recommendations

PURPOSE The aim of this study was to clarify the level of emotional distress experienced by bereaved family members and the perceived necessity for improvement in the care for imminently dying patients and to explore possible causes of distress and alleviating measures. METHODS A cross-sectional nationwide survey was performed in 2007 of bereaved families of cancer patients at 95 palliative care units across Japan. Results Questionnaires were sent to 670 families, and 76% responded. Families reported their experiences as very distressing in 45% of cases. Regarding care, 1.2% of respondents believed that a lot of improvement was needed, compared with 58% who believed no improvement was needed. Determinants of high-level distress were a younger patient age, being a spouse, and overhearing conversations between the medical staff outside the room at the time of the patients death; those reporting high-level necessity of improvement were less likely to have encountered attempts to ensure the patients comfort, received less family coaching on how to care for the patient, and felt that insufficient time was allowed for the family to grieve after the patients death. CONCLUSION A considerable number of families experienced severe emotional distress when their family member died. Thus, we propose that a desirable care concept for imminently dying cancer patients should include relief of patient suffering, family advisement on how to care for the patient, allowance of enough time for the family to grieve, and ensuring that family members cannot overhear medical staff conversations at the time of the patients death.

Reactivation of physical motor information in the memory of action events

When attempting to memorize action sentences (e.g., open an umbrella), performing the action of the sentence (enacted encoding) results in better memory performance than simply memorizing the sentences (verbal encoding). This memory enhancement is called the enactment effect. Magnetoencephalography (MEG) was used to elucidate whether the enactment effect is due to physical motor information or whether movement representation is the critical factor in the enactment effect. Physical motor information, which is implicated in the primary motor cortex, represents the speed, form, and kinematic sense of a movement, while movement representation indicates semantic and conceptual information such as movement formulae, movement ideas, and movement imagery, which are especially associated with the parietal cortex. We measured activities within the motor region and parietal cortex during a recognition test and compared activities during recognition with enacted and verbal encoding condition. The results showed that recognition performance was better for enacted encoding. The MEG data indicated that the left primary motor cortex with enacted encoding condition was activated in all subjects, though with verbal encoding condition, this activation appeared in only one subject. These activities were observed between 150 and 250 ms after recognition stimuli onset and were transmitted into the left parietal cortex. Moreover, activities in the right parietal cortex following enacted encoding were greater than those following verbal encoding, and the activities appeared 600-700 ms after onset of the recognition stimuli. These results suggest that the enactment effect occurs by the reactivation of the physical motor information and that this information facilitates activities related to movement representation.

A Nationwide Survey of Quality of End-of-Life Cancer Care in Designated Cancer Centers, Inpatient Palliative Care Units, and Home Hospices in Japan: The J-HOPE Study

CONTEXT End-of-life (EOL) cancer care in general hospitals and home care has not previously been evaluated in Japan. OBJECTIVES This study aimed to evaluate EOL cancer care from the perspective of bereaved family members in nationwide designated cancer centers, inpatient palliative care units (PCUs), and home hospices in Japan. METHODS We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members of cancer patients in March 2008 for 56 designated cancer centers and in June 2007 for 100 PCUs and 14 home hospices. Outcomes were overall care satisfaction, structure and process of care (Care Evaluation Scale), and achievement of a good death (Good Death Inventory). RESULTS In designated cancer centers, PCUs, and home hospices, 2794 (response rate 59%), 5312 (response rate 69%), and 292 (response rate 67%) bereaved family members participated, respectively. Mean scores for overall care satisfaction were high for all places of death, at 4.3 ± 1.2 for designated cancer centers, 5.0 ± 1.2 for PCUs, and 5.0 ± 1.0 for home hospices. Designated cancer centers showed significantly lower ratings than PCUs and home hospices for structure and process of care and achievement of a good death (P = 0.0001 each). Home hospices were rated significantly higher than PCUs for achievement of a good death (P = 0.0001). CONCLUSION The main findings of this study were: (1) overall, bereaved family members were satisfied with end-of-life care in all three places of death; (2) designated cancer centers were inferior to PCUs and home hospices and had more room for improvement; and 3) home hospices were rated higher than PCUs for achieving a good death, although home hospices remain uncommon in Japan.

Past, present, and future of palliative care in Japan

Palliative care in Japan has developed through a number of transition stages. The first of these was the recognition of costs for care received at a palliative care unit as eligible for reimbursement under the medical insurance system. The second stage was the recognition of costs for care received from a hospital-based palliative care team as eligible for reimbursement under the medical insurance system. The third stage was government policy relating to palliative care, including establishment of the Cancer Control Act formulation of the Basic Plan to Promote Cancer Control Programs and implementation of the Promotion Plan for the Platform of Human Resource Development for Cancer. A total of 350 000 cancer patients died during fiscal 2011, of which 9% made use of a palliative care unit. The use of palliative care is steadily growing with a trend away from palliative care units toward palliative care teams and care in the home. Whereas it was once seen as the limited treatment of terminal care, palliative care is increasingly becoming integrated into mainstream treatment. Basic palliative care education programs for physicians not specializing in palliative care and other medical practitioners are bringing about the spread of basic palliative care in Japan, thus putting in place broad foundations for the practice of palliative care. Improving the quality of palliative care and providing specialized palliative care are essential in Japan. Future challenges are (i) the construction of a community palliative care network, (ii) fostering specialists in palliative care and (iii) the provision of high-quality palliative care and end-of-life care to patients with life-threatening illnesses that are not limited to cancer.

Independent Validation of the Modified Prognosis Palliative Care Study Predictor Models in Three Palliative Care Settings

CONTEXT Accurate prognostic information in palliative care settings is needed for patients to make decisions and set goals and priorities. The Prognosis Palliative Care Study (PiPS) predictor models were presented in 2011, but have not yet been fully validated by other research teams. OBJECTIVES The primary aim of this study is to examine the accuracy and to validate the modified PiPS (using physician-proxy ratings of mental status instead of patient interviews) in three palliative care settings, namely palliative care units, hospital-based palliative care teams, and home-based palliative care services. METHODS This multicenter prospective cohort study was conducted in 58 palliative care services including 16 palliative care units, 19 hospital-based palliative care teams, and 23 home-based palliative care services in Japan from September 2012 through April 2014. RESULTS A total of 2426 subjects were recruited. For reasons including lack of followup and missing variables (primarily blood examination data), we obtained analyzable data from 2212 and 1257 patients for the modified PiPS-A and PiPS-B, respectively. In all palliative care settings, both the modified PiPS-A and PiPS-B identified three risk groups with different survival rates (P<0.001). The absolute agreement ranged from 56% to 60% in the PiPS-A model and 60% to 62% in the PiPS-B model. CONCLUSION The modified PiPS was successfully validated and can be useful in palliative care units, hospital-based palliative care teams, and home-based palliative care services.

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.