End-of-life patients with cancer may find expressing their symptoms difficult if they can no longer communicate verbally because of deteriorating health. In this study, we assessed these symptoms ...using machine learning, which has excellent predictive capabilities and has recently been applied in healthcare. We performed a retrospective clinical survey involving 213 patients with cancer from August 2015 to August 2016. We divided the reported symptoms into two groups-visible and nonvisible symptoms. We used decision tree analysis, an analytical machine learning method that organizes and analyzes information in the form of a tree diagram to visually represent the information structure. Our machine learning model used patient background data and visible symptoms to predict nonvisible symptoms: pain, dyspnea, fatigue, drowsiness, anxiety, delirium, inadequate informed consent, and spiritual issues. The highest and/or lowest values for prediction accuracy, sensitivity, and specificity were 88.0%/55.5%, 84.9%/3.3%, and 96.7%/24.1%, respectively. This work will facilitate better assessment and management of symptoms in patients with cancer. This study was the first to predict nonvisible symptoms using decision tree analyses for patients with cancer receiving palliative care. Notably, applications based on our results may assess symptoms to the same extent as healthcare professionals.
Abstract Context End-of-life discussions are crucial for providing appropriate care to patients with advanced cancer at the end of their lives. Objectives To explore associations between end-of-life ...discussions and bereaved families’ depression and complicated grief, as well as the quality of patient death and end-of-life care . Methods A nationwide questionnaire survey of bereaved family members was conducted between May and July 2014. A total of 13,711 bereaved family members of cancer patients who were cared for by specialist palliative care services at 75 institutions throughout Japan and died before January 2014 participated. We evaluated the prevalence of depression (defined as the Patient Health Questionnaire-9 ≥10) and complicated grief (defined as the Brief Grief Questionnaire ≥8) in bereaved family members. Moreover, we evaluated the quality of death and end-of-life care withthe Good Death Inventory (GDI) and the Care Evaluation Scale (CES), respectively. Results A total of 9123 questionnaires were returned (response rate 67%), and 80.6% of the respondents reported that they had end-of-life discussions. After propensity-score weighted adjustment, the results showed that bereaved family members who had end-of-life discussions had a lower frequently of depression (17.3% vs. 21.6%; P < 0.001) and complicated grief (13.7% vs. 15.9%; P = 0.03). End-of-life discussions were associated with better quality of death (The GDI score, 47.2 ± 8.5 vs. 46.1 ± 9.4; P < 0.001) and end-of-life care (the CES score, 84.1 ± 11.4 vs. 78.9 ± 14.3; P < 0.001). Conclusions End-of-life discussions may contribute to reducing depression and complicated grief in bereaved family members, and enable patients to experience quality end-of-life care and a good death.
Abstract 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.
Palliative care in Japan has developed through a number of transition stages. The first of these was the recognition of costs for care received at a palliative care unit as eligible for reimbursement ...under the medical insurance system. The second stage was the recognition of costs for care received from a hospital-based palliative care team as eligible for reimbursement under the medical insurance system. The third stage was government policy relating to palliative care, including establishment of the Cancer Control Act formulation of the Basic Plan to Promote Cancer Control Programs and implementation of the Promotion Plan for the Platform of Human Resource Development for Cancer. A total of 350 000 cancer patients died during fiscal 2011, of which 9% made use of a palliative care unit. The use of palliative care is steadily growing with a trend away from palliative care units toward palliative care teams and care in the home. Whereas it was once seen as the limited treatment of terminal care, palliative care is increasingly becoming integrated into mainstream treatment. Basic palliative care education programs for physicians not specializing in palliative care and other medical practitioners are bringing about the spread of basic palliative care in Japan, thus putting in place broad foundations for the practice of palliative care. Improving the quality of palliative care and providing specialized palliative care are essential in Japan. Future challenges are (i) the construction of a community palliative care network, (ii) fostering specialists in palliative care and (iii) the provision of high-quality palliative care and end-of-life care to patients with life-threatening illnesses that are not limited to cancer.
Purpose
Some patients experience intense symptoms refractory to intensive palliative care, and palliative sedation is sometimes used. Palliative sedation may be classified into proportional and ...continuous deep sedation (CDS). The primary aim of this study was to compare family experience between families of patients who received proportional or CDS.
Methods
A multicenter questionnaire survey was conducted involving bereaved families of cancer patients who received proportional or CDS based on a sedation protocol. Overall evaluation of sedation (satisfaction, family-perceived distress, appropriateness of timing, and patient distress) and 13-item family concerns, good death, satisfaction with care, depression, quality of care, unfinished business, and balance between symptom relief and maintaining communication were measured.
Results
Among the 2120 patients who died, 222 patients received a continuous infusion of midazolam. A sedation protocol was used in 147 patients, and questionnaires were sent to 124 families. A total of 78 responses were finally returned (proportional, 58 vs. CDS, 20). There were no significant differences in the overall evaluation, family concerns, total score of good death, satisfaction, depression, or balance between symptom relief and maintaining communication. On the other hand, some quality of care items, i.e., relationship with medical staff (
P
< 0.01), physical care by nurses (
P
= 0.04), and coordination and consistency (
P
= 0.04), were significantly better in the CDS group than in the proportional sedation group. Family-reported unfinished business was also better in the CDS group, with marginal significance.
Conclusions
Family experience of CDS was not less favorable than proportional sedation, and actually rated more favorably for some elements of quality of care and unfinished business.
Abstract Context Clarification of the potential differences in end-of-life care among East Asian countries is necessary to provide palliative care that is individualized for each patient. Objectives ...The aim was to explore the differences in attitude toward patient autonomy and a good death among East Asian palliative care physicians. Methods A cross-sectional survey was performed involving palliative care physicians in Japan, Taiwan, and Korea. Physicians' attitudes toward patient autonomy and physician-perceived good death were assessed. Results A total of 505, 207, and 211 responses were obtained from Japanese, Taiwanese, and Korean physicians, respectively. Japanese (82%) and Taiwanese (93%) physicians were significantly more likely to agree that the patient should be informed first of a serious medical condition than Korean physicians (74%). Moreover, 41% and 49% of Korean and Taiwanese physicians agreed that the family should be told first, respectively; whereas 7.4% of Japanese physicians agreed. Physicians' attitudes with respect to patient autonomy were significantly correlated with the country (Japan), male sex, physician specialties of surgery and oncology, longer clinical experience, and physicians having no religion but a specific philosophy. In all 12 components of a good death, there were significant differences by country. Japanese physicians regarded physical comfort and autonomy as significantly more important and regarded preparation, religion, not being a burden to others, receiving maximum treatment, and dying at home as less important. Taiwanese physicians regarded life completion and being free from tubes and machines as significantly more important. Korean physicians regarded being cognitively intact as significantly more important. Conclusion There are considerable intercountry differences in physicians' attitudes toward autonomy and physician-perceived good death. East Asia is not culturally the same; thus, palliative care should be provided in a culturally acceptable manner for each country.
Bereaved family members sometimes experience distress due to stressful life events. However, the effects of this distress on depression and grief remain unclear.
To clarify the degree of distress due ...to postbereavement stressful life events, its associated factors, especially social isolation, and its effects on major depressive disorder (MDD) and complicated grief (CG) risks among bereaved family members of patients with cancer.
This cross-sectional questionnaire survey was conducted in 2018 as part of the J-HOPE4 study. We recruited 1740 bereaved family members of patients with cancer who died from July to August of 2018. We assessed distress due to postbereavement stressful life events with the Bereavement Secondary Stressor Scale, social isolation with the Lubben Social Network Scale Short-Form, and the MDD and CG risk with the Patient Health Questionnaire-9 and Brief Grief Questionnaire, respectively.
Among the 913 (52.5%) respondents, 88%, 57%, 46%, 28%, and 19% experienced distress due to incidental tasks, daily life difficulties, financial problems, problems with other people, and deterioration of family relationships, respectively. More distress was associated with higher risks of MDD (odds ratio OR = 2.5, P < 0.01) and CG (OR = 2.5, P < 0.01). Social isolation and specific backgrounds were associated with more distress in response to stressful life events.
Most family members experienced distress due to stressful life events, which were risk factors for MDD and CG. Assessing risk factors for maladaptation to post-bereavement life changes and enhancing readiness to adapt to them is important.
Few studies have investigated appropriate referral timing of specialized palliative care (SPC) from the perspective of cancer patients’ and families’ experiences. We aimed to clarify appropriate SPC ...referral timing for patients with advanced cancer and their families. We used data from a nationwide bereaved family survey in Japan. We sent a questionnaire to 999 bereaved families of cancer patients who died in 164 palliative care units (PCUs) and analyzed the first SPC referral timing and how patients evaluated it. We defined SPC as outpatient or inpatient palliative care service comprising certified palliative care physicians, advanced-practice nurses, and multidisciplinary practitioners. Finally, 51.6% (
n
= 515) of all responses were analyzed. The SPC referral timing was evaluated as appropriate (26.1%), late or too late (20.2%), early or too early (1.2%), or none of these (52.5%). Of these, 32.3% reported that they were referred to an SPC when diagnosed with advanced or incurable cancer or during anti-cancer treatment, and 62.6% reported they were referred after anti-cancer treatment. Patient-perceived appropriateness of SPC referral timing was associated with their good death process. After excluding “none of these” responses, a significantly higher proportion of respondents who reported being referred to SPC at diagnosis and during anti-cancer treatment evaluated the response timing as appropriate, compared to those who reported being referred after anti-cancer treatment. Appropriate timing for SPC referrals relates to quality of death; findings suggest that appropriate timing is at the time of diagnosis or during anti-cancer treatment.
Abstract Context Decision making regarding the place of end-of-life (EOL) care is an important issue for patients with terminal cancer and their families. It often requires surrogate decision making, ...which can be a burden on families. Objectives To explore the burden on the family of patients dying from cancer related to the decisions they made about the place of EOL care and investigate the factors affecting this burden. Methods This was a cross-sectional mail survey using a self-administered questionnaire. Participants were 700 bereaved family members of patients with cancer from 133 palliative care units in Japan. The questionnaire covered decisional burdens, depression, grief, and the decision-making process. Results Participants experienced emotional pressure as the highest burden. Participants with a high decisional burden reported significantly higher scores for depression and grief (both P < 0.001). Multiple regression analyses revealed that higher burden was associated with selecting a place of EOL care that differed from that desired by participants ( P < 0.001) and patients ( P = 0.034), decision making without knowing the patient's wishes and values ( P < 0.001) and without participants sharing their wishes and values with the patient's doctors and/or nurses ( P = 0.022), and making the decision because of a due date for discharge from a former facility or hospital ( P = 0.005). Conclusion Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients' and family members' values that are relevant to the desired place of EOL care is important.
Abstract Continuous deep sedation until death (CDS) is a type of palliative sedation therapy, and it has recently become a focus of intense debate. Marked inconsistencies in intervention procedures ...(i.e., what is CDS?) and unstandardized descriptions of patient backgrounds lead to difficulty in comparing the results in the literature. The primary aim of this paper was to propose a conceptual framework to perform empirical studies on CDS. We propose the definition of CDS using the intervention protocol. As there are two types of CDS proposed in world-wide literature, we recommend to prepare two types of intervention protocol for CDS: “continuous deep sedation as a result of proportional sedation” (gradual CDS), and “continuous deep sedation to rapidly induce unconsciousness” (rapid CDS). In addition, we recommend that researchers characterize study patients’ general condition using a validated prognostic tool, Prognosis in Palliative Care Study predictor model-A. Using this conceptual framework, we can compare the outcomes following the same exposures among homogenous patients throughout the world. This paper proposes a provisional definition of two types of CDS. Defining CDS using the intervention protocol and describing patient backgrounds using validated prognostic tools enable comparisons and interpretations of empirical research about CDS. More empirical studies are urgently needed.
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