Search

Abstract: Background: Terminally ill patients with cancer and their families may have a sense of abandonment when they are referred to hospice. This study aimed to clarify the prevalence of families’ sense of abandonment, explore the association between the sense of abandonment and the oncologists’ behaviors, and investigate the association between the sense of abandonment and the families’ depression and complicated grief. Patients and Methods: This was part of a nationwide self‐reported questionnaire survey of bereaved families of patients with cancer who died in inpatient hospices. We sent questionnaires to 947 bereaved families of patients with cancer who died in 133 certified hospices between May 2012 and January 2014. Results: Among 707 responses obtained, a total of 189 (26.7%) families felt abandoned. The factors significantly associated with a greater sense of abandonment were that the oncologists said there was nothing more to do for the patient, the patient's age of less than 60 years, and being the patient's spouse. The factors significantly associated with a lower sense of abandonment were that the oncologists reassured the patients that they had received the best anticancer treatment, that the oncologists recommended hospices as one potential choice rather than mandatory, and that a palliative care team provided care. Families with a sense of abandonment had higher scores on the Patient Health Questionnaire‐9 (p = .096) and Brief Grief Questionnaire (p < .001). Conclusion: Approximately a quarter of bereaved families had a sense of abandonment, which was associated with a higher rate of complicated grief. Oncologists may reduce the sense of abandonment by reassuring that the patients received the best anticancer treatment, recommending hospices as a potential choice rather than as mandatory, and by not saying there is nothing that can be done for the patients. Implications for Practice: This self‐reported questionnaire study investigated the prevalence of families’ feelings of abandonment when they were referred to hospice care, focusing on the association of sense of abandonment and the behavior of their physicians. Nearly a quarter of families felt abandoned by the referral to hospice, and the behavior of some oncologists was associated with the sense of abandonment. [ABSTRACT FROM AUTHOR]

Background: Appropriate use of anti-infective drugs is essential in clinical practice. No evidence-based guidelines or protocols have been published on the appropriate use of anti-infective drugs in patients receiving palliative care as yet. Methods: The medical records, which included the demographic data of patients, anti-infective drug use, bacteriologic findings, symptoms, and hematologic findings were reviewed retrospectively to determine the potential factors that contribute to symptom improvement of patients in terminal phase. Results: Seventy-one patients (64%) who received anti-infective drugs and had a total of 326 episodes of infection were assessed. Symptom improvement was seen in 33.1%. A total of 22.6% of episodes were started on anti-infective drugs during the last week of life and the symptom improvement in these episodes was 9.2%. Symptom improvement was hardly observed when the anti-infective drug was administered during the last week of life. The association between the decrease in the C-reactive protein (CRP) levels, the decrease of the leukocyte count, reduction of fever, and symptom improvement was determined. The decrease of CRP levels was 42.4%; leukocyte, 56.7%; and reduction of fever was 28.4%. The symptom improvement of individual treatment history was also investigated. The symptom improvement of the group who took positive treatment such as chemotherapy, radiotherapy, surgery, and catheter placement was significantly lower than that of no-treatment group. Conclusions: Active cancer treatment probably induces the symptoms related to infection and the use of anti-infective drugs. Unnecessary and excessive treatment should be avoided, and the symptoms should be managed with consideration of the patient's state of mind in order to improve the quality of life of terminally ill patients. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this study is to clarify the actual experiences and preferences of the bereaved family for the care of their deceased family member. Methods: At 95 palliative care units in Japan, a cross-sectional nationwide survey of the bereaved families of cancer patients was performed in 2007. Results: Of the 670 questionnaires sent to bereaved families, 492 were returned (response rate of 76%). The overall requirement to improve the end-of-life care was rated as follows: improvement needed (42.7%) and no improvement needed (58%). In total, 9.4% of the families reported that they experienced problems with the deceased body after leaving the hospital, including a change in the facial appearance (8.5%), stains on the body (8%), and an odor emanating from the body (4%). Regarding the preferences for treatment procedures, over half the families preferred not to have traditional procedures performed in which the deceased's hands are joined with a band, the jaws are tied with a band around the face to close the mouth, and the body is wrapped in a sheet. The most preferable treatment procedure was to have makeup applied lightly and moderately. Maintaining the appearance of the deceased body was related to the overall care evaluation of end–of-life care. Conclusions: As the preferences for the care of deceased bodies are changing, end-of-life care needs to be improved with respect to culture, religious views, and the wishes of the patient and their family. [ABSTRACT FROM AUTHOR]

In palliative care, steroids are often used to alleviate symptoms such as pain, fatigue, anorexia, nausea, and vomiting. Steroids occasionally induce psychiatric adverse effects. It has been reported that treatment of the steroid-induced psychiatric symptoms involves dosage reduction or discontinuation of steroid, and concomitant administration of psychotropics. There were few reports on effectiveness of treatment of steroid-induced psychiatric symptoms by switching from one steroid to the other. We experienced the case of 67-year-old man with malignant pleural mesothelioma and pulmonary emphysema who developed psychiatric symptoms after switching from oral prednisolone 10mg/day to intravenous betamethasone 2mg/day. He began to complain that “time repeats cycles of going and coming” and that he was “unable to distinguish between daytime and night,” and his face became expressionless. He gazed at familiar healthcare professionals as if seeing them for the first time, complaining: “I feel something obscure or strange in my head.” He was unable to remember events on the same or the previous day at all, and made no verbal response to questions by healthcare professionals. He did not know how to eat or use the toilet, and thus required assistance in daily life activities. He did not respond even when talked to by his family members. He continued gazing at them, sometimes saying: “Where am I now? Am I sick?” He behaved restlessly, repeating cycles of lying and sitting. The symptoms disappeared gradually after re-switching from intravenous betamethasone 2mg/day to oral prednisolone 10mg/day. “Steroid switching” may serve as a valid alternative treatment. [ABSTRACT FROM AUTHOR]

Objectives: 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. Methods: 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%). Results: 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). Conclusions: 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. [ABSTRACT FROM AUTHOR]

Background: In order to improve the quality of palliative care, we can learn from bereaved families who were dissatisfied with the care they received. The primary aim of this study was to explore why bereaved families were dissatisfied with specialized inpatient palliative care. Methods: This qualitative study formed part of a nationwide questionnaire survey administered to 1225 bereaved family members of cancer patients who died in certified palliative care units in Japan. The participants were 22 consecutive family members who reported a greater need for improvement in care. Data were analysed by the content analysis. Results: The reasons that the bereaved families listed are classified into 27 categories and seven themes: (1) lack of perceived support for maintaining hope; (2) lack of perceived respect of individuality, especially in attitudes toward death; (3) perceived poor quality of care, especially psychological care, not being treated with dignity and inadequate explanation from physicians; (4) inadequate staffing and equipment, especially physician availability; (5) unavailability of timely administration; (6) lack of accurate information about palliative care units; and (7) family's practical and economic burden. Conclusions: This study identified the multiple sources of dissatisfaction with specialized inpatient palliative care for bereaved families. These findings could be useful in developing a more desirable system of specialised inpatient palliative care. [ABSTRACT FROM AUTHOR]

Background: Constant evaluation is important for maintaining and improving the quality of end-of-life care. We therefore conduct the fourth Japan Hospice and Palliative Evaluation Study (J-HOPE4) as a continuous evaluation study. In this present paper, we describe the design of J-HOPE4. The main purposes of J-HOPE4 are as follows:1) to evaluate the processes, structures, and outcomes of palliative care acute hospitals, palliative care units, and home hospice services; 2) to examine bereaved family members' self-reported psychosocial conditions, such as grief and depression as bereavement outcomes;3) to provide data to ensure and improve the quality of care provided by participating institutions via feedback based on the results from each institution; and 4) provide clinical and academic information concerning the implications of various issues in palliative care by conducting additional studies. Methods: We will conduct a cross-sectional, anonymous, self-reported questionnaire survey. In total, 190 institutions will participate in this study, meaning that 12,000 bereaved family members will be sent a questionnaire. Discussion: This is one of the largest cross-sectional surveys involving hospice and palliative care, both in Japan and worldwide. Because this study will have a large sample size, the findings are expected to be generalizable to other settings. [ABSTRACT FROM AUTHOR]

Context: Cardiopulmonary resuscitation is one of the most important end-of-life care decisions. However, the experience of bereaved families during code status discussions is not well documented.Objective: The aims of this study were to describe the degree of emotional distress of bereaved families when discussing code status, identify their perceived areas for improvement and determine associated factors.Methods: This study is part of a nationwide post-bereavement survey, the Japan Hospice and Palliative care Evaluation 3 (J-HOPE3) study. Questionnaires were sent to the relatives of cancer patients who had died in palliative care units in Japan in 2014.Results: From an analysis of 338 questionnaires, 37% of families reported high emotional distress during code status discussions and 32% reported a need for improvement. Multiple logistic regression analyses revealed the following were associated with high-level distress: the family had hoped for the miraculous and spontaneous recovery of the patient (odds ratio [OR] 2.4, 95% confidence interval [CI] 1.31-4.43, P = 0.0049), the family felt they could not voice their opinion about Cardiopulmonary resuscitation (OR 2.07, CI 1.12-3.81, P = 0.02), or the physician failed to adapt the explanation to the family's preparation level (OR 0.36, CI 0.18-0.68, P = 0.0015). Factors identified for improvement were: holding discussions in a relaxing atmosphere conducive to questioning (OR 0.36, CI 0.16-0.80, P = 0.012), and ensuring the physician adapted the explanation to the family's preparation level (OR 0.47, CI 0.23-0.96, P = 0.037).Conclusion: We recommend the development of educational programs for code status discussions to improve the experience of bereaved family members. [ABSTRACT FROM AUTHOR]

Context: In end-of-life care, rehabilitation for patients with cancer is considered to be an important means for improving patients' quality of death and dying.Objectives: To determine whether the provision of rehabilitation for patients with cancer in palliative care units is associated with the achievement of a good death.Methods: This study involved a cross-sectional, anonymous, and self-report questionnaire survey of families of patients with cancer who died in palliative care units in Japan. We evaluated the short version of Good Death Inventory (GDI) on a seven-point scale. A logistic regression model was used to calculate the propensity score. Covariates included in this model were survey year, patients' characteristics, and families' characteristics. The associations between rehabilitation and GDI were tested using trend tests after propensity score matching adjustment.Results: Of the 1965 family caregivers who received the questionnaires, available data were obtained from 1008 respondents (51.2%). Among them, 285 (28.2%) cases received rehabilitation in palliative care units. There was no difference in total GDI score between the groups with and without rehabilitation. In exploratory analyses, patients receiving rehabilitation were significantly more likely to feel maintaining hope and pleasure (mean 4.50 [SE 0.10] vs. 4.05 [0.11], respectively; effect size [ES] 0.31; P = 0.003), good relationships with medical staff (mean 5.67 [SE 0.07] vs. 5.43 [0.09], respectively; ES 0.22; P = 0.035), and being respected as an individual (mean 6.08 [SE 0.06] vs. 5.90 [0.07], respectively; ES 0.19; P = 0.049) compared with patients not receiving rehabilitation.Conclusion: Rehabilitation in palliative care units may contribute to several domains of quality of death and dying, particularly maintaining hope and pleasure. Further research is needed to investigate whether palliative rehabilitation contributes to the achievement of a good death. [ABSTRACT FROM AUTHOR]

Context: The importance of communication between the cancer bereaved and others has been emphasized, but little is known about the more problematic aspects of this communication such as "unhelpful communication."Objectives: The aim of this study was to establish which types of communication are perceived by the bereaved to be unhelpful.Methods: We conducted a cross-sectional, anonymous, nationwide survey at 103 certified hospice facilities/palliative care units in Japan.Results: A total of 630 (63%) bereaved responded. Over 60% of the bereaved experiencing such communication considered it to be unhelpful, with the most unhelpful communication being "They emphasized the positive aspects of death." Thirteen items related to communication were separated into two factors ("advice for recovery" and "comments on cancer") by factor analysis. "Comments on cancer" were more unhelpful to them and were more often provided by those around them. With regard to "advice for recovery," losing a spouse was a stronger predictor with a higher odds ratio for communication distress than losing a parent (odds ratio, 5.34; 95% CI, 1.63-17.57).Conclusion: A number of the bereaved have experienced unhelpful communication regarding advice on dealing with bereavement and cancer. To prevent putting an unnecessary burden on the bereaved with such unhelpful communication, it is essential to understand problematic aspects. Even when people have no intention of hurting the bereaved, some communication may do so. Communication with the bereaved is also a core clinical skill required by health professionals, and further efforts are required to support the grieving process. [ABSTRACT FROM AUTHOR]