Saran Yoshida

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 qualitative study of decision-making by breast cancer patients about telling their children about their illness

ObjectiveMany breast cancer patients are troubled about telling their school-age children about their illness. However, little attention has been paid to the factors that encourage or discourage them from revealing the illness. This study explored decision-making by breast cancer patients about telling their children about their illness.MethodsParticipants were 30 breast cancer patients recruited from a regional cancer institution in Japan. Semi-structured interviews were conducted and content analysis was performed.ResultsSix preparatory stages of decision-making by Japanese breast cancer patients about telling their children about their illness were identified as follows: contemplation, preparation, action-hospitalization and surgery, action-adjuvant therapy, action-diagnosis, and action-prognosis. We also identified 11 categories of positive aspects and ten categories of negative aspects about revealing their illness to children. The categories of negative aspects with higher frequency were similar to those found by previous research, but categories of positive aspects were unique. The rate of reference to negative aspects in total reduces gradually as the preparatory stage advances, and in action-diagnosis and action-prognosis stages the balance between positive and negative aspects becomes about half and half.ConclusionsPatients, especially in action-hospitalization and surgery, can be expected to tell their children about their illness although they find negative aspects much more compelling than positive aspects and experience great distress. These patients have special needs for support from others.

Practices and evaluations of prognostic disclosure for Japanese cancer patients and their families from the family's point of view.

OBJECTIVE The primary end points of this analysis were to explore 1) the practices of prognostic disclosure for patients with cancer and their family members in Japan, 2) the person who decided on the degree of prognosis communication, and 3) family evaluations of the type of prognostic disclosure. METHOD Semistructured face-to-face interviews were conducted with 60 bereaved family members of patients with cancer who were admitted to palliative care units in Japan. RESULTS Twenty-five percent of patients and 75% of family members were informed of the predicted survival time of the patient. Thirty-eight percent of family members answered that they themselves decided on to what degree to communicate the prognosis to patients and 83% of them chose not to disclose to patients their prognosis or incurability. In the overall evaluation of prognosis communication, 30% of the participants said that they regretted or felt doubtful about the degree of prognostic disclosure to patients, whereas 37% said that they were satisfied with the degree of prognostic disclosure and 5% said that they had made a compromise. Both in the “prognostic disclosure” group and the “no disclosure” group, there were family members who said that they regretted or felt doubtful (27% and 31%, respectively) and family members who said that they were satisfied with the degree of disclosure (27% and 44%, respectively). SIGNIFICANCE OF RESULTS In conclusion, family members assume the predominant role as the decision-making source regarding prognosis disclosure to patients, and they often even prevent prognostic disclosure to patients. From the perspective of family members, any one type of disclosure is not necessarily the most acceptable choice. Future surveys should explore the reasons why family members agree or disagree with prognostic disclosures to patients and factors correlated with family evaluations.

Population-Based Quality Indicators for Palliative Care Programs for Cancer Patients in Japan: A Delphi Study

CONTEXT Cancer control programs in Japan strongly endorse the dissemination of palliative care, and various policy measures have been implemented; however, indicators for evaluating palliative care programs have not been defined. OBJECTIVES The aim of this study was to develop quality indicators for palliative care programs taking a population-based view to meet the challenge of cancer control in the Japanese population. METHODS We conducted a modified Delphi survey. The panelists rated a list of indicators over three iterative rounds according to four perspectives: 1) consistency with the policy target, 2) relevance to the problem, 3) clarity of expression, and 4) measurement feasibility. The criterion for adoption of candidate indicators was set at a total mean score of 7 or more. Finally, the most relevant and important indicators were selected; consensus was defined by agreement of panelists at the panel meeting. RESULTS Among 49 panelists surveyed, 48 (98%), 39 (80%), and 43 (88%) responded over the three rounds, respectively. The 15 indicators were identified from 11 domains: patient-reported quality of life, bereaved family-reported quality at the end of life, family care, place of death, bereaved family-reported quality of palliative care, specialized palliative care services, opioid utilization, public perceptions about palliative care, palliative care education to primary care providers, specialist palliative care services, and regional palliative care. CONCLUSION Comprehensive quality indicators for palliative care programs were identified. The indicators are currently being used, and the feasibility of measuring change over time will be examined. It is expected that the indicators will be used effectively in the future. It is important to evaluate outcomes of the program, to improve weaknesses, improve outcomes, and promote the welfare of cancer patients.

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.

What determines the timing of discussions on forgoing anticancer treatment? A national survey of medical oncologists

PurposeEnd-of-life discussions (EOLd) including the option of forgoing anticancer treatment infrequently occur until treatment options have been exhausted for advanced cancer patients. We aimed to identify oncologist-related factors contributing to the timing of discussing the option of forgoing anticancer treatment.MethodsIn this nationwide survey of 864 medical oncologists, we asked about physicians’ attitudes toward the timing of discussing the option of forgoing anticancer treatment for a simulated patient with newly diagnosed metastatic cancer, physicians’ experience of EOLd, perceptions of a good death, and beliefs. Multivariate analyses identified determinants of early discussions.ResultsAmong 490 physicians (response rate = 57%), 167 (35%) would discuss the option of forgoing anticancer treatment “now (at the diagnosis).” Physicians’ attitudes toward discussing the option “now” were significantly correlated with a greater physician-perceived importance of life completion (odds ratio (OR) = 1.30, 95%CI = 1.00–1.69, p = 0.048) and dying in a preferred place (OR = 1.29, 95%CI = 1.01–1.65, p = 0.045) for a good death, and not perceiving EOLd as being severely distressing for patients/families (OR = 0.70, 95%CI = 0.54–0.95, p = 0.021). In multivariate analyses, independent determinants of the attitude toward discussing the option now included a greater physician-perceived importance of life completion for a good death (OR = 1.38, 95%CI = 1.05–1.81, p = 0.019), and not perceiving EOLd as being severely distressing for patients/families (OR = 0.70, 95%CI = 0.52–0.94, p = 0.017).ConclusionsReflection by oncologists on their own perception regarding a good death and beliefs about EOLd may help oncologists individualize the timing of discussing the option of forgoing anticancer treatment.