Yutaka Shirahige

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.

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.

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

PurposePatients’ 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.MethodsAn 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.ResultsA 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”.ConclusionsAdvanced 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.

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.

How and Why Did a Regional Palliative Care Program Lead to Changes in a Region? A Qualitative Analysis of the Japan OPTIM Study

CONTEXT Improving palliative care is one of the major issues throughout the world. OBJECTIVES The primary aim of this study was to explore how and why a regional palliative care program led to changes in a region. METHODS As part of a nationwide mixed-methods study of a regional palliative care program, a qualitative study was performed with 101 health care professionals involved in the implementation of the program. In-depth interviews were done, focusing on perceived changes and the perceived reasons for the changes. We used thematic analyses. RESULTS Seven themes were identified as follows: 1) improved communication and cooperation among regional health care professionals; 2) increased confidence in the system to care for cancer patients at home; 3) improved knowledge/skills, practice, and perception of palliative care; 4) contribution to self-growth; 5) wide variability in perceived changes in the knowledge and perception of patients, family members, and the general public; 6) wide variability in the perceived regionwide effects of the project; and 7) unresolved issues. Participants emphasized improved communication and cooperation among regional health care professionals and stated a variety of ways of how communication and cooperation influenced daily practice. The main reasons for changes included regionwide interdisciplinary conferences and informal interactions at a variety of meetings. CONCLUSION This study advances understanding of how the regional palliative care program created a change in the region. The findings are useful for developing a conceptual framework and identifying key interventions to improve regional palliative care for clinicians, researchers, and policy makers.

Exploring the perceived changes and the reasons why expected outcomes were not obtained in individual levels in a successful regional palliative care intervention trial: an analysis for interpretations

ContextThe Japan Outreach Palliative Care Trial of Integrated Model (OPTIM) study, a mixed-methods study to evaluate the effects of a comprehensive regional palliative care program, revealed that the program provided broad positive outcomes at the regional level: increased home death, palliative care use, patient- and family-reported qualities of care, and health care professionals’ difficulties. Not all participants however obtained positive outcomes and thus exploring the reasons why expected outcomes were observed in individual levels could be of value.AimsThe primary aims were to explore why expected outcomes were not obtained in individual participants, and the perceived changes in daily practices of physicians and nurses were explored.Subjects and methodsPostintervention questionnaire survey on 857 patients, 1,137 bereaved family members, 706 physicians, and 2,236 nurses were analyzed.ResultsThe reasons for not achieving home deaths included unexpected rapid deterioration, caregivers unavailable, concerns about adequate responses to sudden changes, and physical symptoms uncontrolled, while lack of physician availability at home and lack of information from physicians were less frequently reported. The reasons for not receiving specialized palliative care services were the lack of recommendations from physicians and no information about palliative care services. The reason for evaluating the quality of palliative care as not high was that clinicians tried to relieve symptoms, but there were limited effects and insufficient time. Many physicians and nurses reported that they became more aware of palliative care, that the availability of palliative care specialists and knowledge about palliative care improved, and that they cooperated with other regional health care providers more easily.ConclusionThe OPTIM study seemed to succeed in optimizing physician availability at home, improves physician information about home care, achieved maximum efforts to relieve patient distress by clinicians, and increased communication among regional health care professionals. To achieve further better outcomes, multiple interventions to the health care system to be performed on the basis of a comprehensive regional palliative care program are proposed.

A population-based survey on perceptions of opioid treatment and palliative care units: OPTIM study.

This study aimed to clarify the general public’s perceptions of opioids and palliative care units (PCUs) and explore factors related to such perceptions. A cross-sectional, anonymous questionnaire was administered to 8000 people. Although a majority agreed with positive perceptions of opioids and PCUs, some also agreed with negative perceptions, such as opioids are addictive and shorten life (28% and 27%, respectively). Multiregression analyses revealed that respondents with a better knowledge of PCUs had higher positive perceptions than those without such knowledge (P <.001). The higher positive perceptions were associated with a higher sense of security regarding regional cancer care (P < .001). Providing the general public with adequate knowledge about palliative care may improve perceptions of palliative care and the sense of security.

Administrators' perspectives on end-of-life care for cancer patients in Japanese long-term care facilities

PurposeThe purpose of this study was to clarify administrators’ perspectives on availability of recommended strategies for end-of-life (EOL) care for cancer patients at long-term care (LTC) facilities in Japan.MethodsA cross-sectional survey was conducted with administrators at Japanese LTC facilities. Participants were surveyed about their facilities, reasons for hospitalization of cancer patients, and their perspectives on availability of and strategies for EOL care.ResultsThe 97 responses were divided into medical facility (n = 24) and non-medical facility (n = 73) groups according to physician availability. The most frequent reasons for hospitalization were a sudden change in patient’s condition (49.4%), lack of around-the-clock care (43.0%), and inability to palliate symptoms (41.0%). About 50% of administrators believed their facilities could provide EOL care if supported by palliative care experts. There was no significant difference between facility types (P = 0.635). Most administrators (81.2%) regarded unstable cancer patients as difficult to care for. However, many (68.4%) regarded opioids given orally as easy to administer, but regarded continuous subcutaneous infusion/central venous nutrition as difficult. Almost all administrators believed the most useful strategy was transferring patients to hospitals at the request of patients or family members (96.9%), followed by consultation with palliative care experts (88.5%).ConclusionAlthough LTC facilities in Japan currently do not provide adequate EOL care for cancer patients, improvement might be possible with support by palliative care teams. Appropriate models are necessary for achieving a good death for cancer patients. Interventions based on these models are necessary for EOL care for cancer patients in LTC facilities.

Strategies for Development of Palliative Care From the Perspectives of General Population and Health Care Professionals: A Japanese Outreach Palliative Care Trial of Integrated Regional Model Study.

This study primarily aimed to identify future actions required to promote palliative care in Japan. The future actions regarded as effective by the general population were “improve physicians’ skill in palliative care” (61%), “create a counseling center for cancer” (61%), and “improve nurses’ skill in palliative care” (60%). In contrast, future actions regarded as effective by the health care professionals were “set up a Web site that provides information about cancer” (72%), “promote consultation with specialists in palliative care” (71%), and “open an outpatient department specializing in palliative care” (70%). The results suggest (1) development and maintenance of settings; (2) enhancement of palliative care education and training programs for health care providers; and (3) improvement in distributing information about cancer and regional palliative care resources to the general population.