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Background The importance of advance care planning (ACP) has been recognized in the palliative care of patients with heart failure. It is necessary for dissemination of ACP to characterize the perceptions of physicians and nurses towards ACP and to promote mutual understanding. The aim of this study is to investigate the perceptions of physicians and nurses concerning ACP for patients with heart failure. Methods We conducted a self-administered questionnaire survey with physicians and nurses who belonged to the 427 certified institutions for implantable cardioverter defibrillator (ICD) and/or cardiac resynchronization therapy (CRT) in Japan. The self-administered questionnaire was originally designed based on the guidelines on palliative care or ACP and previous studies on the barriers of ACP. We asked the participants the recognition about condition/timing to implement ACP, Content of care to be implemented in ACP, and barriers against implementing ACP. A Mann-Whitney U test was performed and r value was calculated an effect size (ES) in order to evaluate the characteristic perceptions among physicians and nurses. Results Valid responses were obtained from 163 physicians (38.2%) and 208 nurses (48.7%). Regarding the condition/timing, nurses tended to recognize that ACP should be implemented from earlier clinical stages than physicians. Regarding the contents of ACP, both physicians and nurses placed emphasis in assessing the patient's perception of disease progression. The biggest difference was found in the item "Ask patient about what has been important in life so far"; 78.6% of physicians but 94.2% of nurses chose "it must/should be implemented" (Cohen's r=0.31). Regarding the barriers, both physicians and nurses recognized the difficulty in prognosis prediction. The biggest differences were found in the items "Medical staff does not know how to implement ACP for patients and their families" (45.6% of physicians and 70.4% of nurses chose "strongly agree/agree", r=0.27), and "There is disagreement regarding care goals among team members of different professions" (18.5% in physicians and 43.3% in nurses, r=0.27). Conclusions It is suggested that discussions and further studies are necessary concerning the condition/ timing of implementing ACP from early stages, specific manuals/protocols and recommendation on rolesharing within a multidisciplinary team.

This study clarified the evaluation of the information about palliative care units (PCUs) from the oncologists by the bereaved family members of Japanese patients with cancer at the time of their first referral. A multicenter questionnaire survey examining the amount, timing, and adequacy of information received about PCUs was conducted. Half of the respondents (N = 465, mean age = 60 years) were spouses. Findings showed that 55% of the respondents thought the amount of information was inadequate and 33% thought the timing of the information about PCU from the oncologist was inadequate. Greater perceived inadequacy of the amount of information was significantly associated with (1) obtaining information from other patients and/or family member who had no experience with PCUs and (2) not acquiring information about the availability of medical staff and medical treatments at PCUs. Greater perceived inadequacy of the timing of the information was significantly associated with acts by the oncologist and/or nurses, such as providing insufficient information or saying there is nothing more that can be done any longer; however, this was not significantly associated with the actual timing of the oncologists’ information. Medical staff should understand what information families desire and provide enough detail for patients to imagine accurately what time spent in a PCU would be like. Moreover, practitioners should strive to improve methods of communication and engagement after the information provision, rather than prioritizing the timing of the information.

Objective We evaluated avoidance behaviors of healthy partners of breast cancer patients and sought to (1) describe men's perception of their own avoidance behavior and (2) identify the background factors associated with such behavior. Methods An Internet-based survey was conducted, and analysis was performed on the responses of 368 male spouses of female breast cancer patients. Results Thirty to forty percent of spouses had some type of problem avoidance behavior toward their wives. There was a high correlation (r = 0.70, P

Background We examined factors associated with positive consequences for family members who served as caregivers of terminal cancer patients. Methods We conducted a nationwide cross-sectional survey of 501 bereaved family members who served as caregivers for terminal cancer patients. The main outcomes were measured by the previously developed Caregiving Consequences Inventory, which assesses perceived rewards and burdens of caregiving. Results Bereaved family caregivers reported high levels of perceived rewards and burden. Among the characteristics of bereaved family members, older age, female gender, and having a religion were associated with some domains of perceived rewards, but being a spouse of a patient was negatively associated with some domains of perceived rewards. Caregiver depression or perceived burden did not affect positive consequences of caregiving. However, receiving bereavement care was significantly associated with positive outcome in all four perceived reward domains (sense of mastery [adjusted odds ratio {aOR} = 1.69; 95% CI, 1.05–2.70]; appreciation for others [aOR = 2.19; 95% CI, 1.27−3.76]; meaning in life [aOR = 1.80; 95% CI, 1.13–2.89]; and reprioritization about his/her life [aOR = 2.02; 95% CI, 1.27–3.19]). Conclusions Family caregivers of terminal cancer patients experience burdens, but caregiving also has positive consequences. This study has important implications for the development of bereavement interventions that aim to encourage positive outcomes and reduce negative outcomes for caregivers. Copyright © 2012 John Wiley & Sons, Ltd.

終末期がん患者はしばしば家族や医療者に対する負担感(self-perceived burden)を経験するといわれている. 負担感を和らげるためのケアが必要とされる一方で, どのようなケアが望ましいかを実証した研究はほとんどない. 本研究では, 終末期がん患者の感じている負担感の実態と, 患者の負担感を和らげるために必要なケアを調査するために, 28名のがん患者の遺族を対象に半構造化面接を行った. 内容分析の結果, 「がん患者の負担感の内容」(例: 下の世話をしてもらうのがつらい), 「がん患者が行っていた負担感に対するコーピング」(例: 家族の仕事や予定を優先するようにいう), 「家族の気持ちと対応」(例: 患者の遠慮は家族への思いやりの表れだと思った), 「患者の負担感に対して必要なケア」(例: ことさら何かを強調するのではなく, 自然な言葉がけをする)が抽出された. 収集された患者の負担感を和らげるためのケアの有用性の評価が今後の重要な課題である.

In Japan, most cancer patients die in the hospital. The aim of this study was to assess the quality of end-of-life treatment for dying cancer patients in general wards and palliative care unit (PCU). A retrospective chart review study was conducted. The following data on cancer patients who died in general wards (N = 104) and PCU (N = 201) at a regional cancer center were collected: do-not-resuscitate (DNR) decisions, treatments in the last 48 h of life, and aggressiveness of cancer care for dying patients. DNR orders were documented for most patients (94% in general wards, 98% in PCU, p = 0.067) and families usually consented (97%, 97%, p = 0.307). Comparison of general wards with PCU showed that, in the last 48 h of life, significantly more patients in general wards received life-sustaining treatment (resuscitation, 3.8%, 0%, p = 0.001; mechanical ventilation, 4.8%, 0%, p = 0.004), large volume hydration (>1,000 ml/day, 67%, 10%, p

Palliative care specialists are faced with extensive barriers to providing effective palliative care. We carried out a survey to identify existing barriers from the point of view of palliative care experts in Japan and determine the priorities for future actions to overcome these barriers.We conducted a cross-sectional mail survey in December 2004. We sent out 2607 questionnaires to members of the Japanese Society of Palliative Medicine and Hospice Palliative Care Japan. We asked all respondents two open-ended questions regarding barriers and future actions in the context of palliative care in Japan. In total, 426 questionnaires were returned (response rate of 16%).We identified 95 different answers concerning barriers to providing effective palliative care. The three most frequent answers were "general medical practitioners' lack of interest, knowledge, and skills" (n = 203), "general population's lack of knowledge and misunderstandings about palliative care" (n = 122), and "general medical practitioners' failure to provide information and lack of communication skills" (n = 89). We identified 136 different answers concerning future actions required to improve palliative care. The three most frequent answers were "organize study sessions on palliative care or case conferences in hospitals" (n = 122), "provide information about palliative care to the general population" (n = 117), and "in undergraduate education, make palliative care a compulsory course" (n = 88).We identified numerous barriers to providing effective palliative care, related to not only medical practitioners, but also economic factors and the general population. These findings suggest that to overcome these barriers, we need to take action on many fronts, including increasing social awareness and effecting political change, as well as addressing problems relating to practitioners. We prioritized the future actions. The most frequent urgent problems were identified. We hope that collaborative efforts by the relevant organizations will improve palliative care in Japan.

Background: There is no standardized method by which bereavement care is offered by hospice/palliative care units (PCUs) in Japan. Aim: To evaluate bereavement services provided by hospice/PCUs and clarify demands for bereavement care. Design: Qualitative design based on semistructured interviews and content analysis. Setting/participants: Forty-four bereaved family members of patients with cancer who died in 9 PCUs in 4 regions. Results: Memorial services were positively evaluated for the following variables: reunion and interaction with staff; the service’s relaxed atmosphere; staff attentiveness; suitable location; suitable timing; program content; and interaction with other bereaved families. Memorial cards were positively evaluated regarding the level of concern shown by the staff and the personalized card. Respondents indicated their desire for a care system, a bereaved family care program, and information services.

The primary goals of this analysis were to explore the pros and cons of prognostic disclosure to patients and their families from the bereaved family's point of view.Semistructured interviews were conducted with 60 bereaved family members of patients with cancer in Japan.There were eight categories of influence related to the disclosure of prognosis to the family, including pros (e.g., "Enabling mental preparedness for the patient's death") and cons (e.g., "Being distressed by acknowledging the patient's prognosis"); and seven categories of influence of not disclosing the prognosis to family, including pros (e.g., "Being able to maintain hope") and cons (e.g., "Being prevented from providing adequate care for the patient"). There were also nine categories of influence related to the disclosure of prognosis to patients (e.g., "Enabling various discussions regarding death with the patient"), and eight categories of influence related to not disclosing the prognosis to patients (e.g., "Maintaining the patient's hope").Although prognostic disclosure to family members can contribute to psychological distress and hopelessness, at the same time, it has the potential to prepare them for the future both emotionally and practically, and also to make the time until the patient's death as meaningful as possible. It is useful for physicians to introduce pros and cons of prognostic disclosure to family members at the time of decision making, to understand the family members' psychological state, and to provide support considering pros and cons whether or not they disclosed prognosis.

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.

We have previously shown that bereavement life review therapy improves the spiritual well-being of a bereaved family, but the factors that influence the efficacy of this therapy have not been determined. Therefore, this study was performed to identify factors associated with improvement of spiritual well-being of bereaved families. The participants were 21 bereaved family members who lost a relative who had been treated in a palliative care unit in Japan. The family members received the Bereavement Life Review over two sessions of about 60 min each. In the first session, the bereaved family member reviewed their memories of the deceased relative with a clinical psychologist and answered several questions. After the first session, the psychologist made an album. In the second session, the family member and the psychologist confirmed the accuracy of the contents of the album. Assessment was performed using the Functional Assessment Chronic Illness Therapy-Spiritual score, based on which the participants were separated into effective and non-effective groups. Factors were extracted from the narrative of the therapy using a text-mining software. Factors such as “good memories of family,” “loss and reconstruction,” and “pleasant memories of last days” were commonly found in the effective group, whereas factors such as “suffering with memories,” “regret and sense of guilt,” and “disagreement on funeral arrangements” were more common in the non-effective group. Factors like “good memories of families,” “loss and reconstruction,” and “pleasant memories of last days” were associated with the improvement of spiritual well-being of bereaved families.

To assess the reliability of quality indicators of end-of-life cancer care (QI-EOL) and evaluate the quality of end-of-life cancer care in general wards by using QI-EOL.A retrospective chart review study was conducted on patients with cancer who died in general wards (n = 104) and the palliative care unit (PCU; n = 200) between September 2004 and February 2006 at a regional cancer center in Japan. Herein, we measured QI-EOL, which was developed to evaluate the quality of end-of-life cancer care based on medical charts. We preliminarily assessed the interrater reliability of QI-EOL and subsequently compared the percentages of QI-EOL documented between settings.The reliability of QI-EOL was assured in 27 of 29 indicators (kappa0.40 or agreement90%). For the reliable indicators, we found wide variation in the percentages of QI-EOL documented, ranging from 0% to 98% in general wards. Thirteen of 27 indicators were significantly less documented in general wards than in PCU. Presence of delirium or agitation was less documented (15% in general wards, 55% in PCU, p0.001), although presence of pain (92%, 93%, p = 1.000) and dyspnea (78%, 78%, p = 1.000) were similarly documented. Observation and oral care (22%, 62%, p0.001) differed significantly. Patient's (29%, 45%, p = 0.009) and family's (30%, 45%, p = 0.014) preferred place of care were infrequently documented. For psychosocial and spiritual concerns, no significant differences were found.QI-EOL is generally a reliable quality measure instrument. We found the need for improvements of end-of-life cancer care in general wards using the QI-EOL.

Background: The aims of this study were to clarify end-of-life cancer care preferences and associations with gooddeath concepts. Methods: The general population was sampled using a stratified random sampling method (N = 2548; response rate = 51%) and bereaved families from 12 certified palliative care units (‘PCU-bereaved families’) were surveyed (N = 513; response rate = 70%). The respondents reported their end-of-life care preferences and good-death concepts. Results: Regarding place of end-of-life care, approximately 50% of the general population preferred ‘Home’, while 73% of PCU-bereaved families preferred ‘PCU’. The concepts of ‘Maintaining hope and pleasure’ and ‘Dying in a favorite place’ were associated with the preference for ‘Home’. Regarding prognostic disclosure, approximately 50% of the participants preferred some level of negotiation with the physician. The concept of ‘Control over the future’ was associated with this preference. Regarding treatment of severe refractory physical distress, 75% of the general population and 85% of the PCU-bereaved families preferred palliative sedation therapy. The concepts of ‘Physical and psychological comfort’ and ‘Unawareness of death’ were associated with this preference. Conclusions: End-of-life care preferences were associated with good-death concepts. It would be useful for healthcare workers to discuss patients’ good-death concepts to support subsequent treatment decisions.

Background: The aims of this study were to (i) conceptualize dimensions of a good death in Japanese cancer care, (ii) clarify the relative importance of each component of a good death and (iii) explore factors related to an individual's perception of the domains of a good death. Methods: The general population was sampled using a stratified random sampling method (n = 2548; response rate, 51%) and bereaved families from 12 certified palliative care units were surveyed as well (n = 513; 70%). We asked the subjects about the relative importance of 57 components of a good death. Results: Explanatory factor analysis demonstrated 18 domains contributing to a good death. Ten domains were classified as ‘consistently important domains’, including ‘physical and psychological comfort’, ‘dying in a favorite place’, ‘good relationship with medical staff’, ‘maintaining hope and pleasure’, ‘not being a burden to others’, ‘good relationship with family’, ‘physical and cognitive control’, ‘environmental comfort’, ‘being respected as an individual’ and ‘life completion’. Conclusions: We quantitatively identified 18 important domains that contribute to a good death in Japanese cancer care. The next step of our work should be to conduct a national survey to identify what is required to achieve a good death.

This study aimed to clarify and compare the awareness and perceptions of the specialized inpatient palliative care service. A cross-sectional questionnaire survey was performed on the general population selected by stratified two-stage random sampling (n=2,548) and bereaved families who actually received specialized inpatient palliative care at 12 palliative care units (PCUs) in Japan (n=513). The respondents reported their awareness and perceptions of PCUs. Thirty-eight percent of the general population answered that they had "considerable" or "moderate" knowledge of PCUs, but 24% answered that they had "no" knowledge. Bereaved families who received PCU care (PCU-bereaved families) were likely to have better perceptions of PCUs than the general population: "alleviates pain" (68% of the general population and 87% of PCU-bereaved families agreed), "provides care for families" (67% and 86%, respectively), and "provides compassionate care" (67% and 87%, respectively). Both groups, however, expressed concerns about PCUs: "a place where people only wait to die" (30% and 40%, respectively) and "shortens the patient's life" (8% and 17%, respectively). These perceptions were associated with overall satisfaction with received care, and differed among the 12 PCUs. In conclusion, public awareness of PCUs was insufficient in Japan. Although PCU-bereaved families were generally likely to have better perceptions of PCUs than the general population, both groups shared concerns that a PCU was a place where people only wait to die. To facilitate appropriate use of specialized palliative care services, more efforts to inform the general population about the actual palliative care system are needed. In addition, the role of PCUs might be reconsidered in terms of the continuum of cancer care.

We investigated the barriers to referral to inpatient palliative care units (PCUs) through a qualitative study across various sources of information, including terminal cancer patients, their families, physicians, and nurses.There were 63 participants, including 13 advanced cancer patients, 10 family members, 20 physicians, and 20 nurses in palliative care and acute care cancer settings from five regional cancer institutes in Japan. Semi-structured interviews were conducted regarding barriers to referral to PCU, and data were analyzed by content analysis method.A total of 21 barriers were identified by content analysis. The leading barriers were (1) a negative image of PCUs by patients and families (n = 39), (2) delay of termination of anti-cancer treatment by physicians in the general wards (n = 24), (3) unwillingness to end anti-cancer treatment and denial of the fatal nature of the disease by patients and families (n = 22), (4) patient's wish to receive care from familiar physicians and nurses (n = 20), and (5) insufficient knowledge of PCUs by medical staff in general wards (n = 17).To correct these unfavorable images and misconceptions of PCUs, it is important to eliminate the negative image of PCUs from the general population, patients, families, and medical staffs. In addition, early introduction of palliative care options to patients and communication skills training regarding breaking bad news are relevant issues for a smooth transition from anti-cancer treatment to palliative care.

One of the most important goals of palliative care is achieving a "good death" or a "good dying process." The primary aim of this study was to identify the components of a Japanese "good death" through qualitative interviews with cancer patients, their families, physicians, and nurses. Semistructured interviews were conducted. Thirteen advanced cancer patients, 10 family members of such patients, 20 physicians, and 20 nurses were recruited from five regional cancer institutions in Japan. Content analysis was applied to answers, and 58 attributes were extracted and classified into 17 categories as follows: Freedom from pain or physical/psychological symptoms, Having a good family relationship, Dying in one's favorite place/environment, Having a good relationship with medical staff, Not being a burden to others, Maintaining dignity, Completion of life, Maintaining a sense of control, Fighting against cancer, Maintaining hope, Not prolonging life, Contributing to others, Control of future, Not being aware of death, Appreciating others, Maintaining pride, and Having faith. The most frequently cited category was "Freedom from pain or physical/psychological symptoms" and the least common was "Having faith." This study identified important components of a good death in Japan. A future quantitative survey is planned to clarify the generalizability of these findings as the primary endpoint of palliative care in Japan.