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.

本研究の目的は、著者らが作成した、看取りの時期にある小児がんの子どもをもつ家族向けのパンフレットの使用可能性を、量的・質的双方の視点から検討することである。小児がんに携わる医療者267名に質問紙を配布し、76名(28%)が回答した。回答者の93%がパンフレットを「使いたい」と回答し、86%が家族に実際に「使える」と答えた。自由記述では、使用の利点として【言葉にすることが難しい部分のコミュニケーションが図れる】【家族が理解しやすい】【家族のタイミングで読める】【看取りの方向性がわかりやすくなる】、留意点として【渡すタイミング】【家族の受け入れ状況】【子どもの状況】【医療チームとしての方針】【家族・医療者の信頼関係】【医療者の使用に対する考え】【資料の分量】が示された。パンフレットは使用可能と考えられたが、個々に使用の利点や留意点を検討のうえ、専門家の支援がある状況での使用が必要である。(著者抄録)

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.

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.

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” [β = 0.082, P = 0.039], “upsetting of patient and family” [β = 0.127, P = 0.001], and “family's sense of uncertainty about when to act based on terminal awareness” [β = 0.141, P = 0.000]) and an outcome factor (“having achieved a good death” [β = −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.

【目的】本研究の目的は、がん患者の家族が、終末期における治療中止の何に、どのような理由で後悔をしているか記述的に明らかにすることである。【方法】がん患者の遺族37名を対象に、意思決定当時と現在の2時点にかけての心理的プロセスに関する半構造化面接を行った。結果は、内容分析によって整理した。【結果】約40%の遺族に何らかの後悔についての発話がみられた。後悔の内容は、8カテゴリーに分類され、決定当時の4カテゴリーから、現在は7カテゴリーに多様化した。後悔に関連する理由は43カテゴリーに分類された。後悔がない理由は、患者や家族の要因や医療者との関係といった当時の状況に関するものが多かった。後悔がある理由は、意思決定のプロセスや選択肢、心理的対処といった意思決定の仕方と医療者との関係が多かった。【結論】後悔の性質と機能的な心理的対処の関連を理解することで、遺族の後悔制御方略を提案できる可能性が示唆された。(著者抄録)

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. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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. (c) 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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.

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.

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. A multi-center questionnaire survey was conducted that included 135 bereaved parents of patients with pediatric cancer in Japan. 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%). 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.

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.

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.

現在日本における強迫性障害(OCD)の有病率は1〜3%に上るとされており、そのうち早期発症(10歳未満発症)の患者の多さが指摘されている。しかし児童思春期のOCDに対する有効な介入方法について、十分な検討は行われていない。そこで本研究では、児童思春期のOCDに対する、全18回から構成される認知行動療法(CBT)プログラムを開発し、その効果を探索的に検討した。17名を対象に暴露反応妨害法(ERP)を中心としたプログラムを実践した結果、ERPを中心としたCBTは、強迫症状の改善に寄与する可能性があること、介入前の強迫行為に対する苦痛が高い場合により効果が得られることが示唆された。本研究は大学院生の訓練機関で行われており、一定程度のトレーニングによって、児童思春期OCDへのCBTは効果を上げることができると考えられた。(著者抄録)

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.

Context. Prognosis is difficult to discuss with patients who have advanced cancer and their families. Objectives. This study aimed to explore the experiences of families of patients with cancer in Japan in receiving prognostic disclosure, explore family perception of the way the prognosis was communicated, and investigate relevant factors of family-perceived need for improvement. Methods. A multicenter questionnaire survey was conducted with 666 bereaved family members of patients with cancer who were admitted to palliative care units in Japan. Results. In total, 86.3% of the families received prognostic disclosure. The overall evaluation revealed that 60.1% of the participants felt that the method of prognostic disclosure needed some, considerable, or much improvement. The parameter with the highest value explaining the necessity for improvement was the family perception that the amount of information provided by the physician was insufficient (beta = 0.39, P < 0.001). Furthermore, the family perception that they had lost hope and that health care providers failed to facilitate preparation for the patient's death had significant direct effects on the necessity for improvement (beta = 0.21, P < 0.001; and beta = 0.18, P < 0.001, respectively). The feelings for the necessity for improvement also were affected significantly by seven communication strategies (i.e., not saying "I can do nothing for the patient any longer,'' pacing explanation with the state of the patient's and family's preparation, saying "We will respect the patient's wishes,'' making an effort to understand the family's distress, being knowledgeable about the most advanced treatments, assuring continuing responsibility as the physician for medical care, and respecting the family's values). Conclusion. This model suggests that strategies for care providers to improve family perception about prognostic disclosure should include 1) providing as much prognostic information as families want; 2) supporting families' hopes by keeping up with up-to-date treatments and by assuring the continuing responsibility for medical care; 3) facilitating the preparation for the patient's death by providing information in consideration of the family's preparations and values; 4) stressing what they can do instead of saying that nothing can be done for the patient; and 5) assuring the family that they will respect the patient's wishes. J Pain Symptom Manage 2011; 41: 594-603. (C) 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Many 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. Participants were 30 breast cancer patients recruited from a regional cancer institution in Japan. Semi-structured interviews were conducted and content analysis was performed. Six 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. Patients, 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.

難治性小児がん患児の家族が経験する困難と,医療者に期待される支援について資料を得ることを目的とし,遺族および医療者を対象とした面接調査を実施した.家族の困難としては「治療やケアの意思決定」「病状の受け入れ」など15カテゴリーが,医療者に期待する支援としては「意思決定支援」「親の理解の促進」など10カテゴリーが得られた.家族の実態およびニーズに即した支援体制を検討するための基礎的資料が得られたと言える.