[Current Status and Improvement Strategies for Integrating Home Palliative Care in Oncology-A Qualitative Study].

This study aimed to investigate healthcare providers' experiences and examine potential strategies for integrating oncologic home palliative care(HPC). This qualitative study was conducted using semi-structured interviews via a web-conferencing system. The data underwent thematic analysis. The participants were 27 healthcare professionals, including oncologists, palliative care physicians, home palliative care physicians, nurses, and medical social workers. Two themes were identified; current status and improvement strategies. Current status encompassed 3 sub-themes: late HPC services involvement, few opportunities for early HPC services introduction, and early referral to HPC establishes rapport with patients. Improvement strategies included 6 sub-themes: interdisciplinary teams meeting to consider patients' hope, identification of outpatients that would benefit from HPC services, HPC service introduction via home visit nursing agencies and outpatient clinics, HPC services introduction via outpatient palliative care clinics, and booklet for patients and families. Numerous participants regarded the timing of HPC services referral as late and had experienced few cases of integrated oncologic HPC. Potential strategies existed in both hospital and home settings. The interdisciplinary collaboration between healthcare providers in both hospital and home settings may facilitate the integration of HPC in oncology.

Culturally Adapted Consensus Definition and Action Guideline: Japan's Advance Care Planning.

CONTEXT: A conceptual framework for advance care planning is lacking in societies like Japan's valuing family-centered decision-making. OBJECTIVES: A consensus definition of advance care planning with action guideline adapted to Japanese society. METHODS: We conducted a multidisciplinary modified Delphi study 2020-2022. Thirty physicians, 10 healthcare and bioethics researchers, six nurses, three patient care managers, three medical social workers, three law experts, and a chaplain evaluated, in 7 rounds (including two web-based surveys where the consensus level was defined as ratings by ≥70% of panelists of 7-9 on a nine-point Likert scale), brief sentences delineating the definition, scope, subjects, and action guideline for advance care planning in Japan. RESULTS: The resulting 29-item set attained the target consensus level, with 72%-96% of item ratings 7-9. Advance care planning was defined as "an individual's thinking about and discussing with their family and other people close to them, with the support as necessary of healthcare providers who have established a trusting relationship with them, preparations for the future, including the way of life and medical treatment and care that they wish to have in the future." This definition/action guideline specifically included support for individuals hesitant to express opinions to develop and express preparations for the future. CONCLUSION: Adaptation of advance care planning to Japanese culture by consciously enhancing and supporting individuals' autonomous decision-making may facilitate its spread and establishment in Japan and other societies with family-centered decision-making cultures.

Development of a national health policy logic model to accelerate the integration of oncology and palliative care: a nationwide Delphi survey in Japan.

BACKGROUND: Despite recommendations to deliver palliative care to cancer patients and their caregivers, their distress has not been alleviated satisfactorily. National health policies play a pivotal role in achieving a comprehensive range of quality palliative care delivery for the public. However, there is no standardised logic model to appraise the efficacy of these policies. This study aimed to develop a logic model of a national health policy to deliver cancer palliative care and to reach consensus towards specific policy proposals. METHODS: A draft version of the logic model and specific policy proposals were formulated by the research team and the internal expert panel, and the independent external expert panel evaluated the policy proposals based on the Delphi survey to reach consensus. RESULTS: The logic model was divided into three major conceptual categories: 'care-delivery at cancer hospitals', 'community care coordination', and 'social awareness of palliative care'. There were 18 and 45 major and minor policy proposals, which were categorised into four groups: requirement of government-designated cancer hospitals; financial support; Basic Plan to Promote Cancer Control Programs; and others. These policy proposals were independently evaluated by 64 external experts and the first to third Delphi round response rates were 96.9-98.4%. Finally, 47 policy proposals reached consensus. The priority of each proposal was evaluated within the four policy groups. CONCLUSIONS: A national health policy logic model was developed to accelerate the provision of cancer palliative care. Further research is warranted to verify the study design to investigate the efficacy of the logic model.

Integrating home palliative care in oncology: a qualitative study to identify barriers and facilitators.

PURPOSE: Access to and close links with home palliative care services are essential to ensure seamless transitions between care settings in anticancer treatment. However, the timing of referrals to home palliative care services is often delayed. We explored barriers to and facilitators of improving the integration of home palliative care and medical oncology experienced by healthcare professionals in Japan. METHODS: This qualitative study involved semi-structured focus groups and individual interviews conducted via a web conferencing system. Participants were 27 healthcare professionals, including oncologists, palliative care physicians, home palliative care physicians, nurses from both cancer hospitals and home visit nursing agencies, and social workers from cancer hospitals. RESULTS: Barriers and facilitators were grouped into three themes: (1) perspectives and ideas on integrating oncology and home palliative care; (2) barriers; and (3) facilitators. Barriers included seven sub-themes: lack of referral criteria for home palliative care services; financial elements related to home palliative care services; patients' lack of understanding of the illness trajectory; collusion in doctor-patient communication about imminent death; frequent visits to cancer hospitals; variations in home palliative care services; and problems in providing treatment and care at home. Facilitators included two sub-themes: relationships between oncologists and home palliative care physicians, and cancer hospital staff experience/knowledge of home palliative care. CONCLUSION: This study identified barriers and facilitators to integrating home palliative care and oncology. Some barriers experienced by professionals were comparable with barriers to early integration of palliative care into oncology.

Perception of mutual aid and its related factors: a study of Japanese high school students.

Japan is a super-ageing country. Constructing the community-based integrated care system in local communities is urgently needed. Mutual aid in local communities is critical for this system. In order to clarify the status of perception of mutual aid in Japanese high school students and to clarify the factors related to the formation of the perception, we conducted a questionnaire study of high school students in a city in Japan (n = 8,687). The results indicate that Japanese high school students show a tendency to have perception of mutual aid for local people (70.8%) rather than the local area (38.9%). Significantly fewer male students have perception of mutual aid than female students (p < 0.01). Factors that affected the perception significantly (p < 0.05) were: i) willingness to stay in the local area for 10 more years, ii) recognition of persons in need of care in the local area, iii) memories of experiencing communication with handicapped and/or elderly people, and iv) experience of taking care of local children. It is important to create opportunities for high school students to communicate with local residents, especially handicapped and/or elderly people in order to foster students' perception of mutual aid.

Changes in Relatives' Perspectives on Quality of Death, Quality of Care, Pain Relief, and Caregiving Burden Before and After a Region-Based Palliative Care Intervention.

CONTEXT: A region-based palliative care intervention (Outreach Palliative Care Trial of Integrated Regional Model Study) increased home death, access to specialist palliative care, quality of care, and quality of death and dying. OBJECTIVES: The objective of this study was to examine changes in palliative care outcomes in different care settings (hospitals, palliative care units, and home) and obtain insights into how to improve region-level palliative care. METHODS: The intervention program was implemented from April 2008 to March 2011. Two bereavement surveys were conducted before and after intervention involving 4228 family caregivers of deceased cancer patients. Family-perceived quality of care (range 1-6), quality of death and dying (1-7), pain relief (1-7), and caregiver burden (1-7) were measured. RESULTS: Response rates were 69% (preintervention) and 66% (postintervention), respectively. Family-perceived quality of care (adjusted mean 4.89, 95% CI 4.54-5.23) and quality of death and dying (4.96, 4.72-5.20) at home were the highest and sustained throughout the study. Palliative care units were at the intermediate level between home and hospitals. In hospitals, both quality of care and quality of death and dying were low at baseline but significantly improved after intervention (quality of care: 4.24, 4.13-4.34 to 4.43, 4.31-4.54, P = 0.002; quality of death and dying: 4.22, 4.09-4.36 to 4.36, 4.22-4.50, P = 0.012). Caregiver burden did not significantly increase after intervention, regardless of place of death. CONCLUSIONS: The dual strategies of transition of place of death to home and improving quality of care in hospitals should be recognized as important targets for improving region-level palliative care.

Family caregivers require mental health specialists for end-of-life psychosocial problems at home: a nationwide survey in Japan.

BACKGROUND: Psychological distress is problematic for patients and their family caregivers in the oncological setting. The level of stress is influenced by the health status of the patient and their family members as well as the support system for home care. However, it remains unclear how best to support distressed caregivers providing end-of-life care at home. METHODS: The present study was performed as part of the Japan Hospice and Palliative Care Evaluation study among caregivers whose family members are provided home palliative care. The caregivers were asked whether they wished to receive psychological support from mental health specialists, and factors associated with the need for psychological support were analyzed. RESULTS: Of the 1052 caregivers, 628 completed the questionnaire. As a whole, 169 subjects [27%; 23-30% (95% confidence interval)] reported needing psychological support from a mental health specialist. According to a multiple regression analysis, factors associated with the need for psychological support included (1) emotional distress due to the need to adapt to rapid worsening of the patient's condition [adjusted odds ratio: 2.62 (95% CI 1.77-3.88), p < 0.001], (2) the poor health conditions of the caregivers [2.93 (1.61-5.36), p < 0.001], and (3) having someone else available to care for the patient in place of the caregiver [0.51 (0.34-0.78), p = 0.002]. CONCLUSIONS: Psychological support is required for caregivers tending to patients at home. Further studies are needed to construct a system to provide continuous support to caregivers. Copyright © 2015 John Wiley & Sons, Ltd.

The effects of community-wide dissemination of information on perceptions of palliative care, knowledge about opioids, and sense of security among cancer patients, their families, and the general public.

PURPOSE: Prejudices against palliative care are a potential barrier to quality end-of-life care. There have been few large-scale community-wide interventions to distribute appropriate information about palliative care, and no studies have investigated their impact on cancer patients, their families, and the general public. Thus, we conducted a 3-year community intervention and evaluated the effects of distributing such information at the community level, and explored associations among levels of exposure, perceptions, knowledge, and the sense of security achieved. METHODS: Over a period of 3 years, we provided flyers, booklets, posters, and public lectures about palliative care in four regions of Japan, and carried out pre- and post-intervention surveys with repeated cross-sectional samplings of cancer patients (pre 859, post 857), bereaved family members (1110, 1137), and the general public (3984, 1435). The levels of exposure to the provided information were measured by a multiple-choice questionnaire after intervention. Multiple logistic regression analyses were used to estimate multivariable-adjusted odds ratios (ORs) for perceptions of palliative care, knowledge about opioids, and sense of security among the exposure groups. RESULTS: Overall perceptions of palliative care, opioids, and receiving care at home improved significantly among the general public and families, but not among the patients at the community level. However, multiple regression revealed that patients of extensive exposure category had significantly more positive perceptions of palliative care to those of non-exposure category (p = 0.02). The sense of security regarding cancer care of all patients, family members, and the general public improved. Among others, the respondents who reported extensive exposure in the general public and family members scored significantly higher sense of security. CONCLUSION: Our findings indicate that providing palliative care information via small media and lectures in the community is effective in improving perceptions of palliative care and knowledge about opioids among the community dwellers, especially for caregivers of the patients. The acquisition of adequate knowledge about palliative care from various information sources may improve people's sense of security regarding cancer.

Improvements in Physicians' Knowledge, Difficulties, and Self-Reported Practice After a Regional Palliative Care Program.

CONTEXT: Although several studies have explored the effects of regional palliative care programs, no studies have investigated the changes in physician-related outcomes. OBJECTIVES: The primary aims of this study were to: (1) clarify the changes in knowledge, difficulties, and self-reported practice of physicians before and after the intervention, (2) explore the potential associations between the level of physicians' participation in the program and outcomes, and (3) identify the reasons and characteristics of physicians who did not participate in the program. METHODS: As a part of the regional palliative care intervention trial, questionnaires were sent to physicians recruited consecutively to obtain a representative sample of each region. Physician-reported knowledge, difficulty of palliative care, and self-perceived practice were measured using the Palliative Care Knowledge Test, Palliative Care Difficulty Scale, and Palliative Care Self-Reported Practice Scale (PCPS), respectively. The level of their involvement in the program and reason for non-participation were ascertained from self-reported questionnaires. RESULTS: The number of eligible physicians identified was 1870 in pre-intervention and 1763 in post-intervention surveys, and we obtained 911 and 706 responses. Total scores of the Palliative Care Knowledge Test, PCPS, and PCPS were significantly improved after the intervention, with effect sizes of 0.30, 0.52, and 0.17, respectively. Physicians who participated in workshops more frequently were significantly more likely to have better knowledge, less difficulties, and better self-reported practice. CONCLUSION: After the regional palliative care program, there were marked improvements in physicians' knowledge and difficulties. These improvements were associated with the level of physicians' participation in the program.

[Talking about home hospices with terminally ill cancer patients -- a multicenter survey of bereaved families].

INTRODUCTION: Communicating with patients is clearly an integral part of physicians' practice, and introducing home hospice care is sometimes a difficult task for oncologists. The primary aims of this study were to clarify family-reported degree of emotional distress and the necessity for improvement in communication when introducing home hospice care, and to identify factors contributing to distress levels. METHODS: A multicenter questionnaire survey was conducted involving 1,052 family members of cancer patients who died at home at 15 home-based hospice services throughout Japan. RESULTS: A total of 616 responses were analyzed(effective response rate of 60%). Fifty-nine percent of the bereaved family members reported that they were distressed or very distressed in receiving information about home hospice care, and 30% reported considerable or much improvement was necessary. There were 6 determinants of family-reported degree of emotional distress and the necessity for improvement: 1 ) Family distress was experienced when the physician stated that the disease progression defeated medicine and nothing could be done for the patient. 2 ) The physicians' explanation did not match with the state of family preparation. 3 ) There was no intimacy between hospital physician and home physician. 4 ) Physicians did not make the atmosphere relaxing enough to allow families to ask questions. 5 ) Nurses did not follow up to generate additional ideas to supplement the physician's statement. 6 ) Family members experienced pressure to make a rash decision. CONCLUSION: In receiving information about transition of home care, a considerable number of families experienced high levels of emotional distress and felt a need for improvement in the communication style. This study proposes 6 strategies to alleviate family distress.

Length of home hospice care, family-perceived timing of referrals, perceived quality of care, and quality of death and dying in terminally ill cancer patients who died at home.

PURPOSE: This study aims to clarify the length of home hospice care, family-perceived timing of referrals, and their effects on the family-perceived quality of care and quality of death and dying of terminally ill cancer patients who died at home and identify the determinants of perceived late referrals. METHODS: A multicenter questionnaire survey was conducted involving 1,052 family members of cancer patients who died at home supported by 15 home-based hospice services throughout Japan. RESULTS: A total of 693 responses were analyzed (effective response rate, 66 %). Patients received home-based hospice care for a median of 35.0 days, and 8.0 % received home hospice care for less than 1 week. While 1.5 % of the families reported the timing of referrals as early, 42 % reported the timing as late or too late. The families of patients with a length of care of less than 4 weeks were more likely to regard the timing of referrals as late or too late. The patients of family members who regarded the timing of referrals as late or too late had a significantly lower perceived quality of care (effect size, 0.18; P = 0.039) and lower quality of death and dying (effect size, 0.15, P = 0.063). Independent determinants of higher likelihoods of perceived late referrals included: frequent visits to emergency departments, patient being unprepared for worsening condition, and patient having concerns about relationship with new doctor. Discharge nurse availability was independently associated with lower likelihoods of perceived late referrals. CONCLUSIONS: A significant number of bereaved families regarded the timing of referrals to home hospices as late, and the perceived timing was associated with the family-perceived quality of care and quality of death and dying. Systematic strategies to overcome the barriers related to perceived late referrals are necessary.

Place of death and the differences in patient quality of death and dying and caregiver burden.

PURPOSE: To explore the associations between place of death and quality of death and dying and caregiver burden in terminally ill patients with cancer and their families. METHODS: Two bereavement surveys were conducted in October 2008 and October 2011. A total of 2,247 family caregivers of patients with cancer who were deceased responded to the mail surveys (response rate, 67%). Family members reported patient quality of death and dying and caregiver burden by using the Good Death Inventory and Caregiving Consequences Inventory. RESULTS: Patient quality of death and dying was significantly higher at home relative to other places of dying after adjustment for patient and/or family characteristics (adjusted means): 5.0 (95% CI, 4.9 to 5.2) for home, 4.6 (95% CI, 4.5 to 4.7) for palliative care units, and 4.3 (95% CI, 4.2 to 4.4) for hospitals. For all combinations, pairwise P < .001; the size of the difference between home and hospital was moderate (Hedges' g, 0.45). Home was superior to palliative care units or hospitals with respect to "dying in a favorite place," "good relationships with medical staff," "good relationships with family," and "maintaining hope and pleasure" (P < .001 for all combinations of home v palliative care units and home v hospitals). Home death was significantly associated with a lower overall (P = .03) and financial caregiver burden (P = .004) relative to hospital death. CONCLUSION: Dying at home may contribute to achieving good death in terminally ill patients with cancer without causing remarkably increased caregiver burden. Place of death should be regarded as an essential goal in end-of-life care.

Does a regional comprehensive palliative care program improve pain in outpatient cancer patients?

CONTEXT: Pain is still a major problem for cancer patients, and the effect of a population-based approach on patients' experience of pain is not fully understood. AIMS: The primary aim of this study was to clarify the changes in pain intensity in outpatients before and after a regional palliative care program. The secondary aim was to clarify the prevalence of patients who had unmet needs for pain treatment and to clarify the reasons for not wanting pain treatment. SUBJECTS AND METHODS: A regional palliative care program was implemented in four regions of Japan. A region-representative sample of metastatic/locally advanced cancer patients in outpatient settings took part in questionnaire surveys before and after the regional intervention. Responses were obtained from 859 from 1,880 and 857 from 2,123 in the preintervention and postintervention surveys, respectively. RESULTS: After a regional palliative care program, neither worst, average, nor least pain levels in outpatients changed significantly. A total of 134 patients (16 %) reported that they needed more pain treatment. There were various reasons for not wanting pain treatment, namely, minimum interference with daily life, general nonpreference for medicines, longstanding symptoms before the diagnosis of cancer, concerns about tolerance and addiction, and experienced neuropsychiatric symptoms under current medications. CONCLUSION: The regional palliative care program failed to demonstrate improvement of the pain intensity of cancer outpatients. One possible interpretation is that they are less likely to be regarded as target populations and that the study population experienced generally well-controlled pain. Future study including patients with more severe pain is needed, but to improve pain levels of cancer outpatients, intensive, patient-directed intervention seems to be more promising than region-based intervention.

Changes in quality of care and quality of life of outpatients with advanced cancer after a regional palliative care intervention program.

CONTEXT: A recent mixed-methods study to evaluate the effects of a comprehensive regional palliative care program, the Japan Outreach Palliative Care Trial of the Integrated Model study, achieved broad positive outcomes at a regional level. This is a secondary analysis of patient outcomes. OBJECTIVES: The primary aims were to explore: 1) the changes in domains of patient-reported quality of care and quality of life after interventions, and 2) the changes in quality of care and quality of life of patients with different characteristics (i.e., performance status, age, and anticancer treatment). METHODS: A region-representative sample of metastatic/locally advanced cancer patients in outpatient settings participated in questionnaire surveys before and after regional intervention. Responses were obtained from 859 of 1880 and 857 of 2123 in the pre- and postintervention surveys, respectively. RESULTS: All subdomain scores of the quality of care, except for help with decision making, significantly improved in the postintervention survey. The percentages of the patients who reported that improvement was necessary decreased from 13% to 5.0%. Although there were no or only a marginally significant difference in total and subdomain scores of quality of life between preintervention and postintervention surveys, the subgroups of patients with a poor performance status and those receiving no anticancer treatment achieved a significant improvement in the quality of life. CONCLUSION: Although average changes in patient-reported outcomes were relatively small in the total sample of patients, the intervention seemed to provide tangible benefits for the patients with poor general conditions. A future regional intervention trial should include patient outcomes in those with a poor general condition to evaluate the net effects of the program.

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.

Patient-perceived usefulness and practical obstacles of patient-held records for cancer patients in Japan: OPTIM study.

BACKGROUND: Although the use of a patient-held record (PHR) for cancer patients has been introduced in many settings, little is known about the role of the PHR in palliative care settings and use in Asian cultures. AIM: This study investigated the patient-perceived usefulness and practical obstacles of using the PHR specifically designed for palliative care patients. DESIGN: This study adopted a qualitative design based on semi-structured interviews and content analysis. SETTING/PARTICIPANTS: Fifty cancer patients were recruited from two regions in Japan. They used the PHR for more than three months, and then were asked to participate in a face-to-face interview. RESULTS: The content analysis revealed the following patient-perceived usefulness of the PHR: (1) increase in patient-staff communication; (2) increase in patient-family communication; (3) increase in patient-patient communication; (4) increase in understanding of medical conditions and treatments; and (5) facilitating end-of-life care discussion. The practical obstacles to using the PHR were also indicated: (1) the lack of adequate instruction about the role of the PHR; (2) undervaluing the role of the PHR and sharing information by medical professionals; (3) patients' unwillingness to participate in decision making; (4) concerns about privacy; (5) burdensome nature of self-reporting; and (6) patients' preference for their own ways of recording. CONCLUSIONS: The PHR can be helpful in facilitating communication, understanding medical conditions and treatments, and facilitating end-of-life care discussion; however, for wide-spread implementation, resolving the obstacles related to both patients and health-care professionals is required.

Pain intensity, quality of life, quality of palliative care, and satisfaction in outpatients with metastatic or recurrent cancer: a Japanese, nationwide, region-based, multicenter survey.

CONTEXT: Increasing numbers of patients with advanced cancer are receiving anticancer and/or palliative treatment in outpatient settings, and palliative care for outpatients with advanced cancer is being recognized as one of the most important areas for comprehensive cancer treatment. OBJECTIVES: The aim of this study was to evaluate pain intensity, quality of life, quality of palliative care, and satisfaction reported by outpatients with advanced cancer. METHODS: Questionnaires were sent to 1493 consecutive outpatients with metastatic or recurrent cancer from four regions in Japan; 859 responses were analyzed (58%). Questionnaires included the Brief Pain Inventory, Good Death Inventory, Care Evaluation Scale, and a six-point satisfaction scale. RESULTS: Approximately 20% of the patients reported moderate to severe pain. Whereas more than 70% agreed or strongly agreed with "good relationship with medical staff" and "being respected as an individual," less than 60% agreed or strongly agreed with "free from physical distress," "free from emotional distress," "maintaining hope," and "fulfillment at life's completion"; 54% reported some agreement with "feel a burden to others." About 20% reported that improvement is necessary in physical care by physicians, physical care by nurses, psycho-existential care, help with decision making, and coordination/consistency of care; 13% reported some levels of dissatisfaction. CONCLUSION: A considerable number of outpatients with metastatic or recurrent cancer experienced pain, physical symptoms, emotional distress, and existential suffering, and advocated improvements in palliative care across multiple areas.

Preferred place of care and place of death of the general public and cancer patients in Japan.

Dying at a favorite place is one of the important determinants for terminally ill cancer patients. The primary aim was to clarify (1) differences in preferred place of care and place of death among the general public across four areas across Japan and (2) preferred place of care and place of death among community-representative cancer patients. A cross-sectional mail survey was conducted on 8,000 randomly selected general population. We examined preferred place of care and place of death using two vignettes and obtained a total of 3,984 (50%) responses. For the pain scenario, approximately 50% of the general public throughout four areas chose home as their preferred place of care; and for the dependent-without-pain scenario, about 40% chose home as preferred place of care. In cancer patients, for both scenarios, approximately 40% chose home as the preferred place of care, and they were significantly less likely to choose home. The most preferred combination of place of care and place of death was home hospice for both groups. Although there were statistically significant differences in preferred place of care and place of death among the four regions, the absolute difference was less than 8%. Independent determinants of choosing home as place of care included concern about family burden and being unable to adequately respond to sudden changes out of working hours. In conclusion, establishing more accessible home and hospice service is strongly required through arranging regional resources to reduce family burden, alleviating patient-perceived burdens, and improving 24-h support at home.

A region-based palliative care intervention trial using the mixed-method approach: Japan OPTIM study.

BACKGROUND: Disseminating palliative care is a critical task throughout the world. Several outcome studies explored the effects of regional palliative care programs on a variety of end-points, and some qualitative studies investigated the process of developing community palliative care networks. These studies provide important insights into the potential benefits of regional palliative care programs, but the clinical implications are still limited, because: 1) many interventions included fundamental changes in the structure of the health care system, and, thus, the results would not be applicable for many regions where structural changes are difficult or unfeasible; 2) patient-oriented outcomes were not measured or explored only in a small number of populations, and interpretation of the results from a patient's view is difficult; and 3) no studies adopted a mixed-method approach using both quantitative and qualitative methodologies to interpret the complex phenomenon from multidimensional perspectives. METHODS/DESIGNS: This is a mixed-method regional intervention trial, consisting of a pre-post outcome study and qualitative process studies. The primary aim of the pre-post outcome study is to evaluate the change in the number of home deaths, use of specialized palliative care services, patient-reported quality of palliative care, and family-reported quality of palliative care after regional palliative care intervention. The secondary aim is to explore the changes in a variety of outcomes, including patients' quality of life, pain intensity, family care burden, and physicians' and nurses' knowledge, difficulties, and self-perceived practice. Outcome measurements used in this study include the Care Evaluation Scale, Good Death Inventory, Brief pain Inventory, Caregiving Consequence Inventory, Sense of Security Scale, Palliative Care Knowledge test, Palliative Care Difficulties Scale, and Palliative Care Self-reported Practice Scale. Study populations are a nearly representative sample of advanced cancer patients, bereaved family members, physicians, and nurses in the region.Qualitative process studies consist of 3 studies with each aim: 1) to describe the process in developing regional palliative care in each local context, 2) to understand how and why the regional palliative care program led to changes in the region and to propose a model for shaping regional palliative care, and 3) to systemically collect the barriers of palliative care at a regional level and potential resolutions. The study methodology is a case descriptive study, a grounded theory approach based on interviews, and a content analysis based on systemically collected data, respectively. DISCUSSION: This study is, to our knowledge, one of the most comprehensive evaluations of a region-based palliative care intervention program. This study has 3 unique aspects: 1) it measures a wide range of outcomes, including quality of care and quality of life measures specifically designed for palliative care populations, whether patients died where they actually preferred, the changes in physicians and nurses at a regional level; 2) adopts qualitative studies along with quantitative evaluations; and 3) the intervention is without a fundamental change in health care systems. A comprehensive understanding of the findings in this study will contribute to a deeper insight into how to develop community palliative care. TRIAL REGISTRATION: UMIN Clinical Trials Registry (UMIN-CTR), Japan, UMIN000001274.

Knowledge, beliefs, and concerns about opioids, palliative care, and homecare of advanced cancer patients: a nationwide survey in Japan.

PURPOSE: Patients' knowledge, beliefs, or concerns about opioids, palliative care, and homecare can be potential barriers to providing quality palliative care. The primary aim of this study was to clarify knowledge about opioids, beliefs about palliative care, and concerns about homecare in advanced cancer patients. METHODS: An anonymous questionnaire was sent to 1,619 outpatients with advanced cancer at 25 hospitals in four different regions of Japan. The respondents were asked to report their knowledge about opioids, beliefs about palliative care, and concerns about homecare, in addition to the levels of their sense of security regarding receiving cancer care in the region. RESULTS: A total of 925 responses were received. In total, 28% believed that opioids are addictive and/or shorten life; 52% believed that palliative care is only for terminally ill patients; 75% agreed that being taken care of at home puts a heavy burden on the family; and 61% agreed that home-visit services cannot respond to sudden changes in a patient's condition. Levels of patients' sense of security were significantly higher in those who agreed that "opioids can relieve most pain caused by cancer" "palliative care relieves pain and distress", "palliative care is provided along with chemotherapy and/or radiation therapy", and "pain can be alleviated as effectively through home-visit services as it can at the hospital", and those who disagreed with the statements that "home-visit services cannot respond to sudden changes in a patient's condition" and "being taken care of at home puts a burden on the family". CONCLUSIONS: Advanced cancer patients frequently had incorrect knowledge about opioids, a belief that palliative care is only for terminally ill patients, and concerns about homecare, especially the family burden and responses to sudden changes. Providing appropriate information about the safety of opioids, the availability of palliative care during the entire course of the disease, and realistic information about homecare is of marked importance to promote patients' sense of security.