How does the frame of communication affect cancer patients' decisions?-from a behavioral economics point of view.

BACKGROUND: It has been said that physicians should provide their patients with accurate evidence in terms of information on treatment options. However, in some cases, although the physician provides accurate and sufficient information, the patient still chooses the medically not-recommended treatment. The purpose of this research is to clarify how patients' decisions differ when a physician changes the frame of an explanation when he/she provides information about cancer treatment. METHODS: An online questionnaire survey was conducted in March 2017. Through the aid of a survey company, we emailed questionnaires to 1,360 cancer patients who received treatment within the last 2 years. We randomly assigned participants to 6 hypotheticals scenario of a terminal cancer patient, and presented hypothetical evidence in different ways. Subsequently, we asked survey participants whether they would choose to receive additional anti-cancer treatment. RESULTS: Although there was no statistically significant difference between scenarios, the "social burden" groups showed a lower rate of patients who preferred to continue a medically ineffective anti-cancer treatment than the control group, at a 10% significance level. The scenario significantly affected the patients' sense of abandonment [F(5, 1,354)=5.680, P<0.001], sense of distress [F(5, 1,354)=3.920, P=0.002], and necessity of improvement [F(5, 1,354)=2.783, P=0.017]. CONCLUSIONS: Nudges were not shown to be effective in situations where discontinuation of anticancer treatment was being considered. On the other hand, some nudges were found to be invasive and should be used with caution.

Preferences of bereaved family members on communication with physicians when discontinuing anticancer treatment: referring to the concept of nudges.

BACKGROUND: This study aimed to clarify the situation and evaluate the communication on anticancer treatment discontinuation from the viewpoint of a bereaved family, in reference to the concept of nudges. METHODS: A multi-center questionnaire survey was conducted involving 350 bereaved families of patients with cancer admitted to palliative care units in Japan. RESULTS: The following explanations were rated as essential or very useful: (i) treatment would be a physical burden to the patient (42.9%), (ii) providing anticancer treatment was impossible (40.5%), (iii) specific disadvantages of receiving treatment (40.5%), (iv) not receiving treatment would be better for the patient (39.9%) and (v) specific advantages of not receiving treatment (39.6%). The factors associated with a high need for improvement of the physician's explanation included lack of explanation on specific advantages of not receiving treatment (ß = 0.228, P = 0.001), and lack of explanation of 'If the patient's condition improves, you may consider receiving the treatment again at that time.' (ß = 0.189, P = 0.008). CONCLUSIONS: Explaining the disadvantages of receiving treatment and the advantages of not receiving treatment, and presenting treatment discontinuation as the default option were effective in helping patients' families in making the decision to discontinue treatment. In particular, explanation regarding specific advantages of not receiving treatment was considered useful, as they caused a lower need for improvement of the physicians' explanation.

Preferred Communication with Adolescent and Young Adult Patients Receiving Bad News About Cancer.

Purpose: Several studies have investigated good communication practices with adult patients receiving bad news about cancer. However, while communication preferences may differ between adults and adolescent and young adult (AYA) patients, these preferences have not been determined for AYA patients. The primary endpoint of this study was to describe the communication preferred by AYA patients with cancer. Methods: The study cohort consisted of 15 patients who received a cancer diagnosis at the age of 15-29 years. Patients were recruited at the National Cancer Center Hospital or through "STAND UP!!," an association of AYA patients with cancer. Semistructured interviews were conducted, and content analysis was performed to analyze the data. Results: For the preferred communication of AYA patients, 80 categories were extracted in the following five domains: (1) "Supportive setting," (2) "Method of disclosure of bad news," (3) "Information given," (4) "Emotional support," and (5) "Support for the patient's decision making." Although more than half of the categories extracted were identical to the preferred communication of adult patients, some categories specific to AYA patients were identified that physicians should consider. Preferences specific to AYA patients included mentioning generation-specific social factors, not showing excessive empathy, and communicating in a manner considering their age and cognitive development that supports their decision making. Conclusion: Although physicians should be mindful of the specific preferences of AYA patients, the basic attitude and communication preferences are similar to those of patients of other generations.

Association between experiences of advanced cancer patients at the end of life and depression in their bereaved caregivers.

OBJECTIVE: Research on the association between circumstances of death in advanced cancer patients and depression in their bereaved caregivers is limited. METHODS: A longitudinal study was performed on patients admitted to 21 inpatient hospices/palliative care units (PCUs) in Japan. Patient symptoms were assessed at admission and in the last 3 days of life. Data on distressing events (unexpected death, bleeding) and received treatments (morphine prescriptions, continuous deep sedation, cardiopulmonary resuscitation) were also obtained. Bereaved caregiver depression was assessed 6 months or more after patient death via mail survey using the Patient Health Questionnaire-9 (PHQ-9). A multivariable logistic regression analysis was used to explore variables predicting bereaved caregiver depression. RESULTS: Of 1324 deceased patient-bereaved caregiver dyads, data were finally analyzed for 711 dyads. The proportion of probable depression (PHQ-9 scores ≥10) in bereaved caregivers was 13.6% (91/671; 95% confidence interval: 11.0-16.2). The multivariable logistic regression analysis showed that patient hyperactive delirium at PCU admission was significantly associated with the development of bereaved caregiver depression (odds ratio: 2.2, 95% CI: 1.2-3.8). Bereaved caregiver perceived low social support (OR: 4.7, 95% CI: 2.2-10.0) and low preparedness for death (OR: 4.5, 95% CI: 2.6-7.8) were also significantly associated with the development of depression. Other patient and bereaved caregiver variables had no association with depression. CONCLUSIONS: Hyperactive delirium in terminally ill cancer patients was associated with bereaved caregiver depression. The development of effective strategies to reduce delirium-related agitation and to provide educational interventions for caregivers may be needed.

Quality indicators of palliative care for acute cardiovascular diseases.

BACKGROUND: Although recent attention to palliative care for patients with cardiovascular diseases has been increasing, there are no specific recommendations on detailed palliative care practices. We proceed on a discussion of the appropriateness and applicability of potential quality indicators for acute cardiovascular diseases according to our previous systematic review. METHODS: We created a multidisciplinary panel of 20 team members and 7 external validation clinicians composed of clinical cardiologists, a nutritionist, a physiotherapist, a clinical psychologist, a critical and emergent care specialist, a catheterization specialist, a primary care specialist, a palliative care specialist, and nurses. After crafting potential indicators, we performed a Delphi rating, ranging from "1 = minimum" to "9 = maximum". The criterion for the adoption of candidate indicators was set at a total mean score of seven or more. Finally, we subcategorized these indicators into several domains by using exploratory factor analysis. RESULTS: Sixteen of the panel members (80%) were men (age, 49.5 ± 13.7 years old). Among the initial 32 indicators, consensus was initially reached on total 23 indicators (71.8%), which were then summarized into 21 measures by selecting relatively feasible time variations. The major domains were "symptom palliation" and "supporting the decision-making process". Factor analysis could not find optimal model. Narratively-developed seven sub-categories included "presence of palliative care team", "patient-family relationship", "multidisciplinary team approach", "policy of approaching patients", "symptom screening and management", "presence of ethical review board", "collecting and providing information for decision-maker", and "determination of treatment strategy and the sharing of the care team's decision". CONCLUSION: In this study we developed 21 quality indicators, which were categorized into 2 major domains and 7 sub-categories. These indicators might be useful for many healthcare providers in the initiation and enhancement of palliative care practices for acute cardiovascular diseases in Japan.

Preferences Regarding End-of-Life Care Among Adolescents and Young Adults With Cancer: Results From a Comprehensive Multicenter Survey in Japan.

CONTEXT: Patient preferences influence end-of-life (EOL) care which patients receive. However, preferences regarding EOL care among adolescent and young adult (AYA) cancer population remain unclear. OBJECTIVES: The objective of the study was to evaluate preferences regarding EOL care among AYA cancer population. METHODS: We evaluated preferences regarding EOL care as a part of a comprehensive multicenter questionnaire study investigating the experience and needs of Japanese AYA cancer population. RESULTS: A total of 349 AYA cancer population (213 AYA cancer patients and 136 AYA cancer survivors) were evaluated. Eighty-six percent (296/344), 53% (180/338), 88% (301/341), and 61% (207/342) of participants with valid response preferred to have prognostic disclosure, receive palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity, actively use palliative care, and stay home at EOL, respectively. In multivariate analysis, the preference regarding prognostic disclosure was associated positively with no child status (odds ratio [OR] = 3.05, P = 0.003) and negatively with history of chemotherapy (OR = 0.23, P = 0.009), the preference regarding palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity was associated positively with status under active cancer treatment (OR = 1.74, P = 0.03), and the preference of staying home at EOL was positively associated with anxiety (OR = 1.72, P = 0.04). CONCLUSION: This study elucidated preferences regarding EOL care among Japanese AYA cancer population. These findings may help health care practitioners to have better understanding of preferences regarding EOL care among this population.

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

PURPOSE: End-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. METHODS: In 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. RESULTS: Among 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). CONCLUSIONS: Reflection 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.

Japanese physicians' attitudes toward end-of-life discussion with pediatric patients with cancer.

PURPOSE: We explored pediatricians' practices and attitudes concerning end-of-life discussions (EOLds) with pediatric patients with cancer, and identified the determinants of pediatricians' positive attitude toward having EOLds with pediatric patients. METHODS: A multicenter questionnaire survey was conducted with 127 pediatricians specializing in the treatment of pediatric cancer. RESULTS: Forty-two percent of participants reported that EOLds should be held with the young group of children (6-9 years old), 68% with the middle group (10-15 years old), and 93% with the old group (16-18 years old). Meanwhile, 6, 20, and 35% of participants answered that they "always" or "usually" discussed the incurability of the disease with the young, middle, and old groups, respectively; for the patient's imminent death, the rates were 2, 11, and 24%. Pediatricians' attitude that they "should have" EOLds with the young group was predicted by more clinical experience (odds ratio [OR] 1.077; p = 0.007), more confidence in addressing children's anxiety after EOLd (OR 1.756; p = 0.050), weaker belief in the demand for EOLd (OR 0.456; p = 0.015), weaker belief in the necessity of the EOLd for children to enjoy their time until death (OR, 0.506; p = 0.021), and weaker belief in the importance of maintaining a good relationship with the parents (OR 0.381; p = 0.025). CONCLUSIONS: While pediatricians nearly reached consensus on EOLds for the old group, EOLds with the young group remain a controversial subject. While pediatricians who supported EOLds believed in their effectiveness or necessity, those who were against EOLds tended to consider the benefits of not engaging in them.

"What I Did for My Loved One Is More Important than Whether We Talked About Death": A Nationwide Survey of Bereaved Family Members.

BACKGROUND: Actions in preparation for death and talks about death between advanced cancer patients and their families are considered essential to achieve a good death. However, little is known about the prevalence of such actions compared with talks and their association with bereaved families' psychological morbidity. OBJECTIVE: To clarify the prevalence of bereaved families having acted in preparation for death and talked about death with their loved one, and to explore their associations with bereaved families' depression and complicated grief (CG). DESIGN: A nationwide survey. Setting/Subject: A total of 999 bereaved families of cancer patients admitted to 133 inpatient hospices in Japan. MEASUREMENTS: The prevalence of families' actions in preparation for and talks about death, Patient Health Questionnaire (PHQ)-9, and Brief Grief Questionnaire (BGQ). RESULTS: Among 678 bereaved families (response rate = 68%), 513 (76%) acted in preparation for death, and 315 (46%) talked about death with their loved one. Those who acted and talked were significantly less likely to suffer depression (PHQ-9 ≥ 10) than those who neither acted nor talked (odds ratio [OR], 0.405; 95% confidence interval [CI], 0.195-0.845; adjusted p = 0.016). Families who acted were significantly less likely to suffer complicated grief (CG; BGQ ≥8), whether they talked (OR, 0.394; 95% CI, 0.185-0.84; adjusted p = 0.016) or not (OR, 0.421; 95% CI, 0.191-0.925; adjusted p = 0.031). CONCLUSIONS: Most families acted in preparation for death, and those who acted were less likely to suffer depression and CG. Clinicians may minimize families' later psychological morbidity by helping patients and families act in preparation for death.

Talking About Death With Terminally-Ill Cancer Patients: What Contributes to the Regret of Bereaved Family Members?

CONTEXT: Talking about death is an important issue for terminally-ill cancer patients and their families. Little is known about how often and which bereaved families regret not having talked about death with their deceased loved one. OBJECTIVES: To explore the prevalence of a regret of not having talked about death with a deceased loved one among bereaved family members of adult cancer patients, and to systematically explore factors contributing to their regret. METHODS: We conducted a nationwide survey of 999 bereaved families of cancer patients admitted to 133 inpatient hospices in Japan and surveyed families' regret on talking about death. Exploratory analyses identified the underlying structures of process, option, and outcome subscales of factors contributing to regret. RESULTS: Among 678 bereaved families (response rate 68%), 224 (33%) regretted not having talked about death sufficiently, whereas 40 (5.9%) conversely regretted having talked about death. Three process factors ("prognostic disclosure to patient" [ß = 0.082, P = 0.039], "upsetting of patient and family" [ß = 0.127, P = 0.001], and "family's sense of uncertainty about when to act based on terminal awareness" [ß = 0.141, P = 0.000]) and an outcome factor ("having achieved a good death" [ß = -0.152, P = 0.000]) contributed to the regret of talking insufficiently. CONCLUSION: A third of bereaved families of adult cancer patients regretted not having talked about death sufficiently. Clinicians may minimize this regret by facilitating a shared understanding of the disease and prognosis, advising families explicitly when to talk based on terminal awareness, providing continuous emotional support, and validating their decision on talking about death.

Meaningful Communication Before Death, but Not Present at the Time of Death Itself, Is Associated With Better Outcomes on Measures of Depression and Complicated Grief Among Bereaved Family Members of Cancer Patients.

CONTEXT: Few studies have explored the clinical significance of the family's presence or absence at the moment of a patient's death and meaningful communication (saying "goodbye") in terms of post-bereavement outcomes. OBJECTIVES: To explore the potential association between the family's depression/complicated grief and their presence at the moment of a patient's death and the patient's communication with the family. METHODS: A nationwide questionnaire survey was conducted on 965 family members of cancer patients who had died at palliative care units. RESULTS: More than 90% of family members wished to have been present at the moment of death (agree: 40%, n = 217; strongly agree: 51%, n = 280); 79% (n = 393) thereof were present. Families' presence at death was not significantly associated with the occurrence of depression and complicated grief, but the dying patient's ability to say "goodbye" to the family beforehand was (depression: adjusted odds rate, 0.42; 95% CI, 0.26-0.69 adjusted P = 0.001; complicated grief: adjusted odds rate, 0.53; 95% CI, 0.29-0.94 adjusted P = 0.009). CONCLUSION: Many families wished to be present at the moment of the patient's death; however, meaningful communication (saying "goodbye") between the patient and family members, and not their presence or absence itself, was associated with better outcomes on measures of depression or complicated grief. Health care professionals could consider promoting both mutual communication (relating to preparation for death) between family members and patients before imminent death, as well as the family's presence at the moment of death.

Physicians' practice of discussing fertility preservation with cancer patients and the associated attitudes and barriers.

PURPOSE: The aim of this study is to describe physicians' clinical practice of discussing fertility issues with cancer patients and determine the factors associated with such discussion. METHODS: In this cross-sectional study, a nationwide Internet survey was conducted among physicians who provided daily medical care to cancer patients at hospitals or clinics. Participants answered a questionnaire assessing characteristics, discussion practices, attitudes, and barriers regarding fertility preservation. RESULTS: Among the 180 participants, 42% discussed fertility issues with patients daily, and 30% had experience in referring patients to fertility preservation specialists. A multivariate logistic regression analysis showed that those who agreed or strongly agreed with the statements "physicians are responsible for discussing fertility preservation" (OR = 2.04, 95% CI 1.14-3.63, p < 0.05) and "patients who have an exceedingly aggressive disease and need immediate cancer treatment should not be told about fertility issues" (OR =1.84, 95% CI 1.09-3.10, p < 0.05) were nearly twice as likely to discuss fertility issues with patients. CONCLUSIONS: Compared to Western countries, fertility issues are less likely to be discussed in Japan. To increase opportunities for patients to discuss fertility issues, the ASCO guidelines should be widely understood. Additionally, these results suggest that physicians who are more likely to discuss fertility issues might feel more conflicted about whether they in fact should discuss such issues with patients with poor prognosis or insufficient time for cancer treatment.

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.

A National Survey to Systematically Identify Factors Associated With Oncologists' Attitudes Toward End-of-Life Discussions: What Determines Timing of End-of-Life Discussions?

BACKGROUND: End-of-life discussions (EOLds) occur infrequently until cancer patients become terminally ill. METHODS: To identify factors associated with the timing of EOLds, we conducted a nationwide survey of 864 medical oncologists. We surveyed the timing of EOLds held with advanced cancer patients regarding prognosis, hospice, site of death, and do-not-resuscitate (DNR) status; and we surveyed physicians' experience of EOLds, perceptions of a good death, and beliefs regarding these issues. Multivariate analyses identified determinants of early discussions. RESULTS: Among 490 physicians (response rate: 57%), 165 (34%), 65 (14%), 47 (9.8%), and 20 (4.2%) would discuss prognosis, hospice, site of death, and DNR status, respectively, "now" (i.e., at diagnosis) with a hypothetical patient with newly diagnosed metastatic cancer. In multivariate analyses, determinants of discussing prognosis "now" included the physician perceiving greater importance of autonomy in experiencing a good death (odds ratio [OR]: 1.34; p = .014), less perceived difficulty estimating the prognosis (OR: 0.77; p = .012), and being a hematologist (OR: 1.68; p = .016). Determinants of discussing hospice "now" included the physician perceiving greater importance of life completion in experiencing a good death (OR: 1.58; p = .018), less discomfort talking about death (OR: 0.67; p = .002), and no responsibility as treating physician at end of life (OR: 1.94; p = .031). Determinants of discussing site of death "now" included the physician perceiving greater importance of life completion in experiencing a good death (OR: 1.83; p = .008) and less discomfort talking about death (OR: 0.74; p = .034). The determinant of discussing DNR status "now" was less discomfort talking about death (OR: 0.49; p = .003). CONCLUSION: Reflection by oncologists on their own values regarding a good death, knowledge about validated prognostic measures, and learning skills to manage discomfort talking about death is helpful for oncologists to perform appropriate EOLds. IMPLICATIONS FOR PRACTICE: Oncologists' own perceptions about what is important for a "good death," perceived difficulty in estimating the prognosis, and discomfort in talking about death influence their attitudes toward end-of-life discussions. Reflection on their own values regarding a good death, knowledge about validated prognostic measures, and learning skills to manage discomfort talking about death are important for improving oncologists' skills in facilitating end-of-life discussions.

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.

A comprehensive study of the distressing experiences and support needs of parents of children with intractable cancer.

OBJECTIVE: The primary endpoints of this study were: (1) to explore the distressing experiences of parents of patients with intractable pediatric cancer in Japan from disclosure of poor prognosis to the present and (2) to explore support they regarded as necessary. METHODS: A multi-center questionnaire survey was conducted that included 135 bereaved parents of patients with pediatric cancer in Japan. RESULTS: The top five distressing experiences shared by over half of the bereaved parents were: 'Realize that the child's disease was getting worse' (96.7%), 'Witness the child's suffering' (96.7%), 'Make many decisions on the basis that the child will die in the not-so-distant future' (83.6%), 'Feel anxious and nervous about the child's acute deterioration' (82.0%) and 'Realize that there was nothing that I could do for the child' (78.7%). The top five support regarded as necessary were: 'Visit the room and speak to the sick child every day' (90.2%), 'Provide up-to-date information' (80.3%), 'Sufficiently explain the disadvantages of each treatment option' (80.3%), 'Show a never-give-up attitude until the end' (78.7%) and 'Make arrangements to allow the sick child to spend time with his/her siblings' (73.8%). CONCLUSIONS: This study identified the common distressing experiences of parents and the support regarded as necessary by them. To provide efficient support with limited manpower in pediatric setting, healthcare professionals should recognize these tasks as high priorities when engage parents of intractable pediatric cancer patients.

Barriers of healthcare providers against end-of-life discussions with pediatric cancer patients.

OBJECTIVE: End-of-life discussions with patients can be one of the most difficult and stressful tasks for the oncologist. However, little is known about the discussions that healthcare providers have with patients in such situations and the difficulties they face. The primary end points of this study were to describe the contents of end-of-life discussion in the pediatric setting and the barriers to end-of-life discussion for pediatric patients, as perceived by pediatric healthcare providers. METHODS: Participants were 10 healthcare providers. Semi-structured interviews were conducted, and the KJ method was performed to analyze the data. RESULTS: We found 23 barriers against end-of-life discussion with pediatric cancer patients. These barriers were classified as follows: healthcare provider factors, patient factors, parent factors and institutional or cultural factors. In addition to barriers found in previous studies, some unique barriers were uncovered such as, 'Lack of confidence to face the patient after the discussion', 'Uncertain responsibility for treatment decision-making' and 'No compelling reason to discuss'. Healthcare providers actively discussed the purpose of treatment and the patients' wishes and concerns; however, they were reluctant to deal with the patients' own impending death and their estimated prognosis. CONCLUSIONS: End-of-life discussion with pediatric patients differs from that with adult patients. Further studies are required to analyze pediatric cases associated with end-of-life discussion and carefully discuss its adequacy, pros and cons.

Regional medical professionals' confidence in providing palliative care, associated difficulties and availability of specialized palliative care services in Japan.

BACKGROUND: Although confidence in providing palliative care services is an essential component of providing such care, factors relating to this have not been investigated in Japan. OBJECTIVE: This study aimed to explore confidence in the ability to provide palliative care and associated difficulties and to explore correlations between these variables. Design A cross-sectional mail survey of medical doctors and registered nurses in Japan was performed as part of a regional intervention trial: the Outreach Palliative Care Trial of Integrated Regional Model study. Subjects Questionnaires were sent to 7905 medical professionals, and 409 hospital doctors, 235 general practitioners, 2160 hospital nurses and 115 home visiting nurses completed them. RESULTS: Confidence in providing palliative care was low and difficulties frequent for all types of medical professionals assessed. In particular, only 8-24% of them, depending on category, agreed to 'having adequate knowledge and skills regarding cancer pain management'. In particular, 55-80% of medical professionals acknowledged difficulty with 'alleviation of cancer pain'. Multiple regression analysis revealed that confidence was positively correlated with the amount of relevant experience and, for medical doctors, with 'prescriptions of opioids (per year)'. Moreover, difficulties were negatively correlated with the amount of relevant clinical experience. CONCLUSIONS: Effective strategies for developing regional palliative care programs include basic education of medical professionals on management of cancer-related pain (especially regarding opioids) and other symptoms.

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.