Search

Context Terminal dyspnea in dying cancer patients is frequent and distressing, and the impact extends to their families. Families are often involved in providing care for terminal dyspnea. Objectives This study aimed to describe various care strategies for terminal dyspnea in cancer patients hospitalized in palliative care units (PCUs), evaluate families’ satisfaction with care for terminal dyspnea, and explore determinants contributing to families’ satisfaction. Methods A nationwide, cross-sectional survey was conducted using a self-reported questionnaire among bereaved families of cancer patients who died in PCUs. The questionnaire consisted of questions on the perceptions of care offered to patients with terminal dyspnea and their families, satisfaction with care for terminal dyspnea, family-perceived intensity of terminal dyspnea, use of oxygen, and background data of patients and families. Results In total, 533 participants (response rate = 54%) returned the completed questionnaires, and 231 reported that their loved one had experienced terminal dyspnea. Dedicated and compassionate care was perceived by 60%–89% of the participants as the strategy provided for patients. Care for family members was perceived by 58%–69% of the participants. Perception of dedicated and compassionate care for patients and that of care for family members were significantly associated with high satisfaction (odds ratio, 95% confidence interval: 8.64, 3.85–19.36 and 15.37, 5.00–47.25, respectively). Conclusion Dedicated and compassionate care may be the essential part of the care for terminal dyspnea. Dedicated and compassionate care for patients and care for family members have a potential of improving the care satisfaction among family caregivers.

Context There has been a growing consensus that parenteral nutrition and hydration is to be forgone in terminally ill patients with cancer. However, it remains unclear what the beliefs and perceptions of parenteral nutrition and hydration by the family members are. Objectives To clarify their beliefs and perceptions and examine the relationships between the factors of family members, their beliefs and perceptions, and their overall satisfaction with the care the patient received at the place of death. Methods This study was performed as a part of the cross-sectional anonymous nationwide survey of the bereaved family members of patients with cancer in Japan. Results In total, 1001 questionnaires were sent, and 610 questionnaires were returned. Among these, 499 were analyzed. Regarding the prevalence of beliefs and perceptions about parenteral nutrition and hydration, when a patient cannot eat enough, parenteral hydration is needed was the highest (87.7%), followed by the opinions of medical staff are important in the issue of parenteral nutrition and hydration, parenteral hydration serves as a substitute for oral hydration, and if I were a patient and could not eat enough, parenteral hydration would be needed (85.1%, 81.0%, and 80.0%, respectively). We extracted two concepts as follows: belief that parenteral nutrition and hydration are beneficial and perceived need for parenteral nutrition and hydration. They were not identified as independent determinants of overall care satisfaction. Conclusion This study showed that beliefs and perceptions about parenteral nutrition and hydration were important in the family members in palliative care.

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.

Context. Bereaved family members are present from diagnosis to the end of life and can look back and evaluate the experience; in addition, the family itself is also an important subject in the care of the patient. Therefore, although it is essential to determine the priority research issues from the viewpoint of the patients and health care workers, it is also crucial to know the important research themes from the viewpoint of the bereaved family members. Objectives. The purpose of this study was to identify research priorities for palliative care in Japan, based on the viewpoint of bereaved family members. Methods/Design. We conducted a cross-sectional, self-report questionnaire survey. Content analysis was performed on free-text answers for research priorities. This study was carried out as part of the third Japan HOspice and Palliative Care Evaluation (J-HOPE3) study. Results. We extracted 1658 codes from the transcripts and organized them into 120 subcategories on the basis of similarity. Subcategories were then organized into eight categories as follows: ; ; ; ; ; ; ; and . Conclusion. The findings of this study can be used as a research agenda for palliative care, which should take first priority in the future, and could be carried out using limited resources.

Context To respect a patient's wish for end-of-life care, “the Act on Decisions on Life-Sustaining Treatment for Patients at the End-of-Life” was enacted in South Korea in 2016. Current understanding of people who would be involved in advance care planning (ACP) is crucial to disseminate it systematically. Objectives The objective of this study was to investigate awareness and attitudes toward ACP in South Korea. Methods A multicenter, nationwide cross-sectional study was conducted a survey regarding ACP among four groups that would have different positions and experiences: 1,001 cancer patients, 1,006 family caregivers, 928 physicians, and 1,005 members of the general public. Results A total of 16% of the general population, 33% of the patients and caregivers, and 61% of the physicians had knowledge of advance directives. More than 63% of the general population, above 72% of the patients and caregivers, and 97% of the physicians were willing to do so when the disease status was aggravated or terminal. The possibility for changing the plan, uncertainty as to whether directives would actually be followed, and psychological discomfort were common reasons for not wanting to engage in ACP. Routine recommendations for a specific medical condition, heightened accessibility, and health insurance support were common factors that could help facilitate ACP. Conclusion Our findings suggest that strategies for promoting ACP should reflect different perspectives among the general public, patients, family caregivers, and physicians. Public advocacy, resources for approaching and integrating ACP into routine health care, as well as systematic support provisions are needed.

Context End-of-life (EOL) cancer care in general hospitals and home care has not previously been evaluated in Japan. Objectives This study aimed to evaluate EOL cancer care from the perspective of bereaved family members in nationwide designated cancer centers, inpatient palliative care units (PCUs), and home hospices in Japan. Methods We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members of cancer patients in March 2008 for 56 designated cancer centers and in June 2007 for 100 PCUs and 14 home hospices. Outcomes were overall care satisfaction, structure and process of care (Care Evaluation Scale), and achievement of a good death (Good Death Inventory). Results In designated cancer centers, PCUs, and home hospices, 2794 (response rate 59%), 5312 (response rate 69%), and 292 (response rate 67%) bereaved family members participated, respectively. Mean scores for overall care satisfaction were high for all places of death, at 4.3 ± 1.2 for designated cancer centers, 5.0 ± 1.2 for PCUs, and 5.0 ± 1.0 for home hospices. Designated cancer centers showed significantly lower ratings than PCUs and home hospices for structure and process of care and achievement of a good death ( P = 0.0001 each). Home hospices were rated significantly higher than PCUs for achievement of a good death ( P = 0.0001). Conclusion The main findings of this study were: 1) overall, bereaved family members were satisfied with end-of-life care in all three places of death; 2) designated cancer centers were inferior to PCUs and home hospices and had more room for improvement; and 3) home hospices were rated higher than PCUs for achieving a good death, although home hospices remain uncommon in Japan.

Policymaking plays an important role in national palliative care services. The Japanese Cancer Control Act was implemented in 2006.To evaluate changes in the structure and processes of palliative care services after implementation of the Cancer Control Act.We conducted annual nationwide surveys in designated cancer care hospitals (DCCHs, n = 349) between 2008 and 2010. The 65-item questionnaire was divided into seven domains: institutional framework, information to patient and family, practice of palliative care, activities of the palliative care teams (PCTs), members of PCTs, regional medical cooperation, and education. Increasing trends were tested using generalized estimating equation models.The response rates were ≥ 99%. All domains showed an increasing trend (P0.001). There were significant increases in full-time PCT physicians (27.4%-45.7%, P(trend)0.001), full-time PCT nurses (38.9%-88.0%, P(trend)0.001), and the median number of annual referrals to PCTs (60-80 patients, P0.001). Essential drugs were available in most DCCHs from baseline. Although outpatient clinics increased significantly (27.0%-58.9%, P(trend)0.001), community outreach programs did not (9.0%-12.6%, P = 0.05). Basic education was actively introduced for in-hospital physicians and nurses (78.2% and 91.4% in 2010), but often unavailable for regional health care providers (basic education for regional physicians and nurses: 63.9% and 71.1% in 2010).The Cancer Control Act promoted the development and enhancement of palliative care services in DCCHs. Regional medical cooperation and education are the future challenges of palliative care in Japan.

Context Japanese people's preferred place of end-of-life care may be affected by their experiences, perceptions, and knowledge related to the end of life. Objectives The aims of this study were to clarify the Japanese population's preferences for the place of end-of-life care and death and to identify the determinants of each choice of preferred place of end-of-life care within their experiences, perceptions, and knowledge. Methods A total of 2000 Japanese people aged 40–79 years participated in a cross-sectional nationwide survey. Results Fifty-five percent (n=1042) responded. Regarding place of end-of-life care, approximately 44% of the general population preferred home, 15% preferred hospital, 19% preferred palliative care unit, 10% preferred public nursing home, 2% preferred private nursing home, and the remaining 11% was unsure. Multinomial logistic regression analysis revealed that the following factors affect people's preferences regarding place of care: 1) experiences, such as "visiting hospital regularly" and "experiencing home death of relatives," 2) perceptions, such as "giving due thought to their own death on a daily basis" and "perceiving lower home palliative care costs to be appropriate after comparing hospital admission fees," and 3) knowledge of "home care nursing" and "24-hour home palliative system by physicians and nurses using insurance." These factors correlated with preference for hospital, palliative care unit, or public nursing home, when compared with the preference of home. Conclusion The present findings may help to develop an effective end-of-life care system in Japan, in line with people's various preferred locations for such care.