Context: In end-of-life care, rehabilitation for cancer patients is considered to be an important means for improving patients’ quality of death and dying (QODD).
Objectives: To determine whether the provision of rehabilitation for cancer patients in palliative care units is associated with the achievement of a good death.
Methods: This study involved a cross-sectional, anonymous, self-report questionnaire survey of families of cancer patients who died in palliative care units in Japan. We evaluated the Good Death Inventory (GDI) short version on a 7-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 1,965 family caregivers who received the questionnaires, available data was obtained from 1,008 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 [standard error = 0.10] vs. 4.05 [0.11], respectively; effect size (ES)= 0.31; p-value = 0.003), “good relationships with medical staff,” (5.67 [0.07] vs. 5.43 [0.09], respectively; ES= 0.22; p-value = 0.035) and “being respected as an individual” (6.08 [0.06] vs. 5.90 [0.07], respectively; ES=0.19;p-value = 0.049) compared with patients not receiving rehabilitation.
Conclusion: Rehabilitation in palliative care units may contribute to several domains of QODD, particularly “maintaining hope and pleasure”. Further research is needed to investigate whether palliative rehabilitation contribute to the achievement of a good death.
Background: Bereaved individuals are known to have greater health risks, such as insomnia, excessive alcohol intake, and depression. However, few studies have investigated the relation between these risks and bereavement outcomes, namely complicated grief (CG) and major depressive disorder (MDD). This study aimed to assess the relation between insomnia, changes in alcohol consumption, and CG or MDD.
Methods: A cross-sectional, self-report questionnaire survey was conducted between May and July 2014 on 20 acute hospitals, 133 inpatient palliative care units (PCUs), and 22 home hospice services. Questionnaires were sent to the bereaved family members identified by each institution.
Results: Data were obtained from 814, 7,291, and 1,018 family members from acute hospitals, PCUs, and home hospice services, respectively. Significant associations were found between CG or MDD and all sleep condition symptoms (OR: 1.48-12.88; all p<0.0001) and between changes in alcohol intake (OR: 1.63-3.55; all p<0.0001).
Limitations: The majority were family members who had lost a loved one to cancer in a PCU, the psychological health of nonresponders was unavailable, the results were based on self-report data, and no clinical assessment interviews were done; this could limit the generalizability of the findings.
Conclusions: Overall, 14% and 17% of the respondents reported increased and decreased alcohol consumption, respectively, and 46–61% reported experiencing insomnia. Interestingly, both increase and decrease in alcohol intake after bereavement were risk factors of possible CG or MDD. These results suggest that assessing sleep conditions and alcohol consumption might help prevent severe psychological impairments in bereaved individuals.
Background: The importance of advance care planning (ACP) has been recognized in the palliative are 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.
BACKGROUND: Palliative care knowledge is essential in primary healthcare due to the increasing number of patients who require attention in the final stage of their life. Health professionals (physicians and nurses) need to acquire specific knowledge and abilities to provide high-quality palliative care. The development of education programmes in palliative care is necessary. The Palliative Care Knowledge Test (PCKT) is a questionnaire that evaluates the basic knowledge about palliative care, but it has not been adapted into Spanish, and its effectiveness and utility for Spanish culture have not been analysed.
OBJECTIVE: The aim of this study was to report the translation into Spanish and a psychometric analysis of the PCKT.
METHODS: The questionnaire survey was validated with a group of 561 physicians and nurses. The PCKT Spanish Version (PCKT-SV) was obtained from a process, including translation, back translation and revision by experts and a pilot study. The content validity and reliability of the questionnaire were analysed.
RESULTS: The results showed internal consistency and reliability indexes similar to those obtained by the original version of PCKT.
CONCLUSION: The PCKT-SV is a useful instrument for measuring Spanish-speaking physician and nurse knowledge of palliative care, and it is suitable to evaluate the effectiveness of training activities in palliative care.
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 to 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 cancer patients in Japan.
RESULTS: In total, 1001 questionnaires were sent and 610 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.
Background: Although recent attention to palliative care for patients with cardiovascular diseases has been increasing, there are no specific recommendations on detailed palliative care practices. We proceed on a discussion of the appropriateness and applicability of potential quality indicators for acute cardiovascular diseases according to our previous systematic review.
Methods: We created a multidisciplinary panel of 20 team members and 7 external validation clinicians composed of clinical cardiologists, a nutritionist, a physiotherapist, a clinical psychologist, a critical and emergent care specialist, a catheterization specialist, a primary care specialist, a palliative care specialist, and nurses. After crafting potential indicators, we performed a Delphi rating, ranging from “1 = minimum” to “9 = maximum”. The criterion for the adoption of candidate indicators was set at a total mean score of seven or more. Finally, we subcategorized these indicators into several domains by using exploratory factor analysis.
Results: Sixteen of the panel members (80%) were men (age, 49.5 ± 13.7 years old). Among the initial 32 indicators, consensus was initially reached on total 23 indicators (71.8%), which were then summarized into 21 measures by selecting relatively feasible time variations. The major domains were “symptom palliation” and “supporting the decision-making process”. Factor analysis could not find optimal model. Narratively-developed seven sub-categories included “presence of palliative care team”, “patient-family relationship”, “multidisciplinary team approach”, “policy of approaching patients”, “symptom screening and management”, “presence of ethical review board”, “collecting and providing information for decision-maker”, and “determination of treatment strategy and the sharing of the care team’s decision”.
Conclusion: In this study we developed 21 quality indicators, which were categorized into 2 major domains and 7 sub-categories. These indicators might be useful for many healthcare providers in the initiation and enhancement of palliative care practices for acute cardiovascular diseases in Japan.
BACKGROUND: People with heart failure report various symptoms and show a trajectory of periodic exacerbations and recoveries, where each exacerbation event may lead to death. Current clinical practice guidelines indicate the importance of discussing future care strategies with people with heart failure. Advance care planning (ACP) is the process of discussing an individual's future care plan according to their values and preferences, and involves the person with heart failure, their family members or surrogate decision-makers, and healthcare providers. Although it is shown that ACP may improve discussion about end-of-life care and documentation of an individual's preferences, the effects of ACP for people with heart failure are uncertain.
OBJECTIVES: To assess the effects of advance care planning (ACP) in people with heart failure compared to usual care strategies that do not have any components promoting ACP.
SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, CINAHL, Social Work Abstracts, and two clinical trials registers in October 2019. We checked the reference lists of included studies. There were no restrictions on language or publication status.
SELECTION CRITERIA: We included randomised controlled trials (RCTs) that compared ACP with usual care in people with heart failure. Trials could have parallel group, cluster-randomised, or cross-over designs. We included interventions that implemented ACP, such as discussing and considering values, wishes, life goals, and preferences for future medical care. The study participants comprised adults (18 years of age or older) with heart failure.
DATA COLLECTION AND ANALYSIS: Two review authors independently extracted outcome data from the included studies, and assessed their risk of bias. We contacted trial authors when we needed to obtain missing information.
MAIN RESULTS: We included nine RCTs (1242 participants and 426 surrogate decision-makers) in this review. The meta-analysis included seven studies (876 participants). Participants' mean ages ranged from 62 to 82 years, and 53% to 100% of the studies' participants were men. All included studies took place in the US or the UK. Only one study reported concordance between participants' preferences and end-of-life care, and it enrolled people with heart failure or renal disease. Owing to one study with small sample size, the effects of ACP on concordance between participants' preferences and end-of-life care were uncertain (risk ratio (RR) 1.19, 95% confidence interval (CI) 0.91 to 1.55; participants = 110; studies = 1; very low-quality evidence). It corresponded to an assumed risk of 625 per 1000 participants receiving usual care and a corresponding risk of 744 per 1000 (95% CI 569 to 969) for ACP. There was no evidence of a difference in quality of life between groups (standardised mean difference (SMD) 0.06, 95% CI -0.26 to 0.38; participants = 156; studies = 3; low-quality evidence). However, one study, which was not included in the meta-analysis, showed that the quality of life score improved by 14.86 points in the ACP group compared with 11.80 points in the usual care group. Completion of documentation by medical staff regarding discussions with participants about ACP processes may have increased (RR 1.68. 95% CI 1.23 to 2.29; participants = 92; studies = 2; low-quality evidence). This corresponded to an assumed risk of 489 per 1000 participants with usual care and a corresponding risk of 822 per 1000 (95% CI 602 to 1000) for ACP. One study, which was not included in the meta-analysis, also showed that ACP helped to improve documentation of the ACP process (hazard ratio (HR) 2.87, 95% CI 1.09 to 7.59; participants = 232). Three studies reported that implementation of ACP led to an improvement of participants' depression (SMD -0.58, 95% CI -0.82 to -0.34; participants = 278; studies = 3; low-quality evidence). We were uncertain about the effects of ACP on the quality of communication when compared to the usual care group (MD -0.40, 95% CI -1.61 to 0.81; participants = 9; studies = 1; very low-quality evidence). We also noted an increase in all-cause mortality in the ACP group (RR 1.32, 95% CI 1.04 to 1.67; participants = 795; studies = 5). The studies did not report participants' satisfaction with care/treatment and caregivers' satisfaction with care/treatment.
AUTHORS' CONCLUSIONS: ACP may help to increase documentation by medical staff regarding discussions with participants about ACP processes, and may improve an individual's depression. However, the quality of the evidence about these outcomes was low. The quality of the evidence for each outcome was low to very low due to the small number of studies and participants included in this review. Additionally, the follow-up periods and types of ACP intervention were varied. Therefore, further studies are needed to explore the effects of ACP that consider these differences carefully.
CONTEXT: The Cancer Control Act was passed in Japan in 2007, and various additional programs on palliative care have been implemented to improve quality of life and relieve pain and suffering in patients with cancer. However, how clinical settings have changed remains unclear.
OBJECTIVES: The primary aim of the present study was to determine changes in nurses' palliative care knowledge, difficulties, and self-reported practices between 2008 and 2015.
METHODS: This study was an analysis of two nationwide observational studies from 2008 to 2015. We conducted two questionnaire surveys for representative samples of nurses in designated cancer hospitals, community hospitals, and district nurse services. The measurements used the Palliative Care Knowledge Test (PCKT, range 1-100), the Palliative Care Difficulties Scale (PCDS, range 1-5), and the Palliative Care Self-Reported Practice Scale (PCPS, range 1-5). Comparisons were made using the nonpaired Student t-test and a multivariate linear regression model using two cohorts.
RESULTS: We analyzed survey results for 2707 nurses in 2008 and 3649 nurses in 2015. Significant improvements were seen in PCKT, PCDS, and PCPS total scores for nurses in every work location over the seven-year study period, with PCKT total scores of 53 vs. 65 (P < 0.001; effect size = 0.60), 47 vs. 55 (P < 0.001; effect size = 0.40), and 52 vs. 55 (P = 0.118; effect size = 0.13), PCDS total scores of 3.0 vs. 2.5 (P < 0.001; effect size = 0.76), 3.4 vs. 2.8 (P < 0.001, effect size = 0.91), and 3.2 vs. 2.9 (P < 0.001; effect size = 0.53), and PCPS total scores of 3.7 vs. 4.0 (P < 0.001; effect size = 0.13), 3.5 vs. 3.8 (P < 0.001; effect size = 0.42), and 3.8 vs. 4.0 (P < 0.011; effect size = 0.21) in designated cancer hospitals, community hospitals, and district nurse services, respectively.
CONCLUSION: Nurses' palliative care knowledge, difficulties, and self-reported practices improved over the seven-year study period, especially in terms of expert support in designated cancer hospitals and knowledge among nurses in designated cancer hospitals.
Objective: There are no instruments evaluating the processes and outcomes of dying care right before and after death. Therefore, we developed and examined the validity and reliability of 2 scales for evaluating dying care processes and outcomes before and after death.
Methods: A cross-sectional, anonymous questionnaire was administered to bereaved family members of patients with cancer who had died in 5 facilities. We evaluated the Dying Care Process Scale for Bereaved Family Members (DPS-B) and the Dying Care Outcome Scale for Bereaved Family Members (DOS-B) with 345 bereaved family members.
Results: A factor analysis revealed that DPS-B and DOS-B each consisted of 4 subscales. For the DPS-B, they were “symptom management,” “respect for the patient’s dignity before and after death,” “explanation to the family,” and “family care.” For the DOS-B, they were “peaceful dying process for the patient,” “being respected as a person before and after death,” “good relationship between the patient and family,” and “peaceful dying process for the family.” Both DPS-B and DOS-B had sufficient convergent and discriminative validity, sufficient internal consistency (DPS-B: a = 0.91 and subscales’ as = 0.78-0.91; DOS-B: a = 0.91 and subscales’ as = 0.78-0.94), and sufficient test–retest reliability (DPS-B: intraclass correlation coefficient [ICC] of total score = 0.79 and subscales = 0.55-0.79; DOS-B: ICC of total score = 0.88 and subscales = 0.70-0.88).
Significance of Results: Both DPS-B and DOS-B are valid and reliable scales for evaluating the dying care processes and outcomes before and after death from the bereaved family members’ perspectives.
BACKGROUND: The purpose of this study was to develop a scale capable of measuring comprehensive quality of life (QOL) outcomes based on the concept of a good death for patients with advanced cancer.
METHODS: We conducted an anonymous cross-sectional questionnaire survey on inpatients being treated at the Oncology Clinic in Saitama Medical University International Medical Center and seven palliative units throughout Japan.
RESULTS: A total of 405 patients with cancer participated in this study. Factor analysis of scores on the Comprehensive Quality of Life Outcome (CoQoLo) inventory revealed 28 items and the following 10 subscales: physical and psychological comfort; staying in a favourite place; maintaining hope and pleasure; good relationships with medical staff; not being a burden to others; good relationships with family; independence; environmental comfort; being respected as an individual; and having a fulfilling life. The total CoQoLo score was moderately correlated with satisfaction (r=0.34) and overall QOL (r=0.34), and moderately correlated with feelings of support and security regarding cancer care (r=0.44). Cronbach's α and the intraclass correlation coefficient of the total score were 0.90 and 0.79, respectively. No significant correlation was found between the total CoQoLo score and self-reported Eastern Cooperative Oncology Group performance status (r=-0.01).
CONCLUSIONS: These results suggest that the CoQoLo has sufficient reliability and validity and therefore provides an accurate measure of QOL outcomes independent of the general physical condition of the patient.
OBJECTIVES: About 10% of those who lose a loved one in hospice or palliative care settings will experience a mental health condition characterized by severe, prolonged grief responses. Criteria for this condition have evolved; we refer to this condition as Complicated Grief (CG) because it is one of the more common names. While there are some indications of associations between CG and poor physical health, explorations of the association between CG and pain is limited. The main objective of this study was to explore whether pain levels are higher in those with CG than those without, using a large population-based samples of Japanese older adults.
METHOD: The study analyzed data from the Japan HOspice and Palliative care Evaluation (J-HOPE) study, a cross sectional study conducted in 2008 that examined the experiences and outcomes among adults throughout Japan who had lost a loved one within a palliative department or hospice setting, via self-report survey. We examined a subsample sample of 324 individuals aged 50 and above who completed a measure of CG.
RESULTS: Family members with high pain group had statistically significantly higher CG symptoms than those with low pain group (M = 66.95 vs. M = 52.05), an association which remained when controlling for demographic and loss-related factors.
CONCLUSION: We found preliminary evidence of an association between CG symptoms and pain, which should be explored in additional samples. Should this finding be replicated, the mechanism of this association could be explored and treatment could potentially address both CG and pain.
This study develops and examines the validity and reliability of 2 scales, respectively, for evaluating nursing care and the experience of difficulties providing nursing care for dying patients with cancer and their families. A cross-sectional anonymous questionnaire was administered to nursing staff caring for dying patients with cancer and their families in 4 general hospitals and a university hospital in Japan. The instruments assessed were the Nursing Care Scale for Dying Patients and Their Families (NCD) and the Nurse’s Difficulty Scale for Dying Patients and Their Families (NDD). Of the 497 questionnaires sent to nurses, 401 responses (80%) were analyzed. Factor analyses revealed that the NCD and NDD consisted of 12 items with 4 subscales: "symptom management," "reassessment of current treatment and nursing care," "explanation to family," and "respect for the patient and family’s dignity before and after death." These scales had sufficient convergent and discriminative validity, sufficient internal consistency (alpha of subscales: NCD, 0.71-0.87; NDD, 0.74-0.93), and sufficient test-retest reliability (intraclass correlation coefficient of subscales: NCD, 0.59-0.81; NDD, 0.67-0.82) to be used as self-assessments and evaluation tools in education programs to improve the quality of nursing care for the dying patients and their families.
This study develops and examines the validity and reliability of 2 scales, respectively, for evaluating nursing care and the experience of difficulties providing nursing care for dying patients with cancer and their families. A cross-sectional anonymous questionnaire was administered to nursing staff caring for dying patients with cancer and their families in 4 general hospitals and a university hospital in Japan. The instruments assessed were the Nursing Care Scale for Dying Patients and Their Families (NCD) and the Nurse’s Difficulty Scale for Dying Patients and Their Families (NDD). Of the 497 questionnaires sent to nurses, 401 responses (80%) were analyzed. Factor analyses revealed that the NCD and NDD consisted of 12 items with 4 subscales: "symptom management," "reassessment of current treatment and nursing care," "explanation to family," and "respect for the patient and family’s dignity before and after death." These scales had sufficient convergent and discriminative validity, sufficient internal consistency (a of subscales: NCD, 0.71-0.87; NDD, 0.74-0.93), and sufficient test-retest reliability (intraclass correlation coefficient of subscales: NCD, 0.59-0.81; NDD, 0.67-0.82) to be used as self-assessments and evaluation tools in education programs to improve the quality of nursing care for the dying patients and their families.
PURPOSE: Although little improvement has been made in the survival rate among young cancer patients over recent decades, whether they have achieved a good death has never been systematically explored. We aimed to clarify whether young cancer patients (aged 20-39 years) have achieved a good death, and compare their achievement with that of middle-aged patients (aged 40-64 years).
METHODS: We analyzed combined data of three nationwide, cross-sectional surveys of families of cancer patients who died at inpatient hospices in Japan (2007-2014). We measured 10 core items of the Good Death Inventory (GDI) short-version on a 7-point scale, and calculated rates of "agree/absolutely agree" and the mean scores.
RESULTS: We analyzed 245 and 5140 responses of families of young and middle-aged patients, respectively. Less than 60% of families of young patients reported “agree/absolutely agree” regarding 9 items, which included “feeling that one’s life was completed” in 44 (18%; 95% confidence interval (CI) = 14–23%), “being independent in daily life” in 48 (20%; 95% CI = 15–25%), and “being free from physical distress” in 103 (42%; 95% CI = 36–48%) young patients. Young patients were significantly less likely to feel “one’s life was completed” (mean = 3.3 (standard deviation = 2.0) vs. 3.8 (1.9), respectively; effect size (ES) = 0.29; adjusted p value = 0.000) and “not being a burden to others” (3.1 (1.5) vs. 3.5 (1.6), respectively; ES = 0.24; adjusted p value = 0.010) than the middle-aged.
CONCLUSIONS: Overall, young cancer patients did not achieve a good death. Future efforts are needed to improve the quality of palliative care for young patients, focusing on psychosocial/spiritual suffering.
Background: End-of-life (EOL) cancer care in Japanese acute care hospitals has not been well described.
Methods: We aimed to assess the aggressiveness of EOL care and examine common treatments administered to cancer patients using a health administrative database. Subjects are adult cancer patients who died at acute care hospitals between April 2011 and March 2014. Data from the Japanese Diagnosis Procedure Combination database were analysed to measure the aggressiveness of care (chemotherapy, intensive care unit [ICU] admission and cardiopulmonary resuscitation [CPR]) and describe procedures and prescriptions administered in the last 14 and 30 days of life, disaggregated by hospital case volume: high, intermediate and low volumes.
Results: Of 248,978 cancer decedents, 170,024 died in high-, 70,231 in intermediate- and 8,723 in low-volume hospitals. Aggressive treatment in the last 14 days of life included chemotherapy (9.4%, 7.3%, and 5.4%, respectively), ICU admission (3.0%, 2.0%, and 2.4%) and CPR (5.8%, 6.4%, and 8.3%). Opioids were administered to 66.0%, 59.0% and 49.4% patients, while Palliative Care Team intervention was performed for 8.5%, 2.2% and 2.0% of patients, respectively in the last 30 days. In high-volume hospitals, radiotherapy and certified outpatient chemotherapy fees were more frequent. Catecholamines and hyperalimentation were more frequently administered in low-volume hospitals.
Conclusion: This is the first study to assess EOL care among Japanese acute care hospitals. More frequent use of chemotherapy at high-volume hospitals may reflect a well-established cancer treatment system. The approach for low-volume hospitals might improve the EOL care for all cancer patients in Japan.
BACKGROUND: Few data are available on bereaved family members' perspective on the frequency of symptoms and degree of distress among terminal patients with cancer.
METHODS: We sent a questionnaire to 1472 bereaved family members of terminal patients with cancer in 20 general hospitals. The questionnaire asked them (1) to indicate which symptoms the patients had, (2) to rate on a 4-point scale the extent to which the symptom was distressing, as follows: 1 = not distressing, 2 = slightly distressing, 3 = quite distressing, and 4 = very distressing at the point of 2 weeks before the patient had died.
RESULTS: We analyzed 805 questionnaires for this study. Anorexia was the commonest symptom among terminal patients with cancer experienced by bereaved family members, followed by somnolence, weight loss, fatigue, and pain. Anorexia was the most distressing symptom among terminal patients with cancer experienced by bereaved family members, followed by weight loss, pain, edema, and dyspnea.
CONCLUSIONS: Anorexia and weight loss were frequent symptoms and bereaved family members felt very distressing. Furthermore, there are not means of effective treatment now. Thus, we think that further study in this field is necessary.
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.
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.
OBJECTIVES: Family conflict has several adverse impacts on caregivers. Thus, there is significant value in determining the prevalence and predictors of family conflict, which can enable the health care provider to intervene if family conflict arises during end-of-life care. Accordingly, we aimed to explore the prevalence and predictors of conflict among the families of patients with advanced cancer who died in palliative care units.
METHODS: This study was a nationwide multicenter questionnaire survey of bereaved family members of cancer patients who died in Japanese palliative care units participating in evaluation of the quality of end-of-life care.
RESULTS: We sent out 764 questionnaires, and 529 questionnaires (69.2%) were returned. As 70 family members refused to participate and we could not identify the answers in one questionnaire, we analyzed a total of 458 responses. The average Outcome-Family Conflict score was 13.5 ± 4.9 (maximum score: 39.5), and 42.2% of family members reported at least one family conflict during end-of-life care. Greater family conflict was significantly associated with younger family age, with family members asserting control over decision making for patient care and with communication constraints among family members, although absent family members "coming out of the woodwork" reduced family conflict.
CONCLUSIONS: Many families of patients with advanced cancer experienced conflict during end-of-life care. Family members asserting control over decision making and communication constraints among family members after diagnosis of cancer can predict the occurrence of family conflict. Absent family members "coming out of the woodwork" might reduce family conflict in particular cultures.
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 [OR], 5.34; 95%CI, 1.63 to 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.