Introduction: It has been suggested that palliative care integrated into standard cancer treatment from the early phase of the disease can improve the quality of life of patients with cancer. In this paper, we present the protocol for a multicentre randomised controlled trial to examine the effectiveness of a nurse-led, screening-triggered, early specialised palliative care intervention programme for patients with advanced lung cancer.
Methods and analysis: A total of 206 patients will be randomised (1:1) to the intervention group or the control group (usual care). The intervention, triggered with a brief self-administered screening tool, comprises comprehensive need assessments, counselling and service coordination by advanced-level nurses. The primary outcome is the Trial Outcome Index of the Functional Assessment of Cancer Therapy (FACT) at 12 weeks. The secondary outcomes include participants’ quality of life (FACT-Lung), depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder-7), illness perception (Prognosis and Treatment Perceptions Questionnaire), medical service use and survival. A mixed-method approach is expected to provide an insight about how this intervention works.
Ethics and dissemination: This study has been approved by the Institutional Review Board of the National Cancer Center Japan (approval number: 2016-235). The findings will be disseminated through peer-reviewed publications and conference presentations and will be reflected on to the national healthcare policy.
Trial registration number UMIN000025491.
BACKGROUND: Well detection of the symptoms and signs of dying patients is essential for providing proper palliative care. Our goal is to evaluate the predominant symptoms and compare the changes in dying patients with digestive tract cancer in Japan, South Korea, and Taiwan.
METHODS: A total of 1057 cancer patients aged 18 years or older admitted in palliative care units with locally advanced or metastatic gastroesophageal, colorectal, and pancreaticobiliary cancer were enrolled from January 2017 to March 2019. The severity of physical and psychological symptoms and signs assessed by physicians and/or nurses upon admission, 1 week after admission, and within 3 days of death, was compared according to cancer type and country of origin.
RESULTS: Among the 338 gastroesophageal, 358 pancreaticobiliary, and 361 colorectal cancer patients, 894 (93.1%) died during the observation period. Fatigue was the most severe symptom in all cancer groups before dying. Dyspnea, fatigue, drowsiness, and ascites improved after hospitalization albeit they worsened prior to death. In particular, ascites was a marked symptom in patients with pancreaticobiliary cancer. Delirium and hallucination gradually worsened during the period leading to death. Differences in manifestations with respect to the country of origin were not significant.
CONCLUSION: We identified the most prevalent signs and symptoms in patients from East Asia who were dying from digestive tract cancers. Proper management, based on these prevalent signs and symptoms during the dying period, plays a vital role in providing adequate palliative care.
OBJECTIVE: No prior studies have used a single sample of bereaved families of cancer patients to compare multiple scales for assessing Complicated Grief. Here, we compare the two measures.
METHODS: We sent a questionnaire to the bereaved families of cancer patients who had died at 71 palliative care units nationwide.
RESULTS: The analysis included 3173 returned questionnaires. Prevalence of Complicated Grief was 7.8% by Brief Grief Questionnaire (with a cutoff score of 8) and 15.5% for Inventory of Complicated Grief (with a cutoff score of 26). The Spearman's correlation coefficient between the Brief Grief Questionnaire and the Inventory of Complicated Grief was 0.79, and a ceiling effect was seen for the distribution of the Brief Grief Questionnaire scores. Although 6.4% of respondents scored both 8 or higher on the Brief Grief Questionnaire and 26 or higher on the Inventory of Complicated Grief, only 1.4% scored both 8 or higher on the Brief Grief Questionnaire and <26 on the Inventory of Complicated Grief. In contrast, 9.1% scored <8 on the Brief Grief Questionnaire but 26 or higher on the Inventory of Complicated Grief.
CONCLUSION: The prevalence of Complicated Grief was estimated to be higher by the Inventory of Complicated Grief than by the Brief Grief Questionnaire in this sample. Patients with severe Complicated Grief might be difficult to discriminate their intensity of grief by the Brief Grief Questionnaire. Once the diagnostic criteria of Complicated Grief are established, further research, such as optimization of cutoff points and calculations of sensitivity and specificity, will be necessary.
Context: The development of palliative care services is a public health priority. The Japanese Cancer Control Act has been promoting palliative care services nationwide for over 10 years.
Objectives: To evaluate long-term changes in the structure and processes of hospital palliative cancer care services nationwide.
Methods: This was an observational study using three representative questionnaire surveys between 2008 and 2018. The questionnaire consisted of domains on the structure and process regarding hospital palliative cancer care services. The changes over time were assessed using the MacNemar test. The differences between groups, namely community hospitals and designated cancer hospitals, were determined using 2 tests.
Results: We analyzed changes over time from 281 designated cancer hospitals and compared the services between 1395 community hospitals and 380 designated cancer hospitals. The development of the structure and processes for designated cancer hospital's palliative cancer care services was greater for 10 years including the number of Palliative Care Consultation Teams (PCTs) with more than 50 patient referrals annually (from 2010 to 2018: 76.2% to 85.4%, P < 0.001). The palliative cancer care services of community hospitals were poorly prepared compared with designated cancer hospitals in 2018, such as the “direct medical care by any member of the Palliative Care Consultation Team at least 3 times a week (41.7% vs. 81.3%; P < 0.001).
Conclusion: Hospital palliative cancer care services in designated cancer hospitals have developed significantly from 2008 to 2018. Building a system to promote palliative care services in community hospitals is a challenge for the next decade.
CONTEXT: Previous studies suggest that clinicians' prediction of survival (CPS) may have reduce the accuracy of objective indicators for prognostication in palliative care.
OBJECTIVES: We aimed to examine the accuracy of CPS alone, compared to the original Palliative Prognostic Score (PaP), and five clinical/laboratory variables of the PaP in far advanced cancer patients.
METHODS: We compared the discriminative accuracy of three prediction models [the PaP-CPS (the score of the categorical CPS of PaP), PaP without CPS (sum of the scores of only the objective variables of PaP), and PaP total score] across 3 SETTINGS: inpatient palliative care consultation team, palliative care unit, and home palliative care. We computed the area under receiver operating characteristic curve (AUROC) for 30-day survival and concordance index (C-index) to compare the discriminative accuracy of these three models.
RESULTS: We included a total of 1,534 subjects with median survival of 34.0 days. The AUROC and C-index in the three settings were 0.816-0.896 and 0.732-0.799 for the PaP total score, 0.808-0.884 and 0.713-0.782 for the PaP-CPS, and 0.726-0.815 and 0.672-0.728 for the PaP without CPS, respectively. The PaP total score and PaP-CPS showed similar AUROCs and C-indices across the three settings. The PaP total score had significantly higher AUROCs and C-indices than the PaP without CPS across the three settings.
CONCLUSION: Overall, the PaP total score, PaP-CPS, and PaP without CPS showed good discriminative performances. However, the PaP total score and PaP-CPS were significantly more accurate than the PaP without CPS.
Background: Tumor fever and infection are common febrile etiologies among advanced cancer patients. To date, only few studies have been conducted to differentiate between tumor fever and infections.
Objective: This study aimed to identify discriminating factors that provide rapid results and are feasible and minimally invasive for discriminating between tumor fever and infection in advanced cancer patients.
Methods: This is a retrospective cohort study. Advanced cancer patients with clinically diagnosed tumor fever or infection, who received medical treatment from palliative care specialists in 10 nationwide Japanese hospitals, were consecutively identified during August 2012 and November 2014. The symptoms, physical findings, blood test results at baseline and during fever, imaging findings, and sociodemographic factors of these patients were retrospectively extracted.
Results: Thirty-three patients with tumor fever and 72 patients with infection were identified. Their mean age was 68.8 years, 68 (64.8%) were men, and the median palliative performance status (PPS) was 50. Statistically significant factors predicting tumor fever by logistic regression analysis were as follows: deterioration of PPS (odds ratio, 0.078), shaking chills during fever (0.067), and change from baseline data of neutrophil/lymphocyte ratio of =5 (0.14).
Conclusions: Shaking chills during fever, and changes from baseline of performance status and white blood cell differentiation can be useful to differentiate between tumor fever and infection among advanced cancer patients. Further confirmatory studies are needed.
OBJECTIVE: To clarify the safety and effectiveness of antipsychotic medication for delirium in patients with advanced cancer receiving palliative care.
METHODS: This was a prospective observational study involving consecutive patients with advanced cancer and delirium receiving antipsychotics in inpatient hospices or psycho-oncology settings. Adjusted mean scores of the Delirium Rating Scale Revised-98 (DRS; range: 0-39) were calculated at baseline and Day 3 using generalized estimating equations. Adverse events over 7 days were evaluated.
RESULTS: Data from 756 patients were analyzed (Mage = 72 ± 11 years, 62% male, 48% bedridden). The adjusted mean DRS score significantly decreased after antipsychotics administration (21.5 [95% confidence interval 19.5 to 23.4] to 20.8 [18.9 to 22.8], p = 0.03, effect size [ES] = 0.02). Significant improvement was associated with age of 75 or older (ES = 0.07), better performance status (0.32), longer estimated prognosis (0.25), psycho-oncological consultation settings (0.20), hyperactive (0.14) or mix-motor subtypes (0.24) of delirium, and quetiapine administration (0.19); significant deterioration was observed in patients with "days" prognosis (0.18). Extrapyramidal symptoms (9.8%) and somnolence (8.5%) were the most prevalent adverse events.
CONCLUSIONS: The use of antipsychotics as part of comprehensive delirium management was safe and may provide some symptomatic benefits for patients with terminal illness and delirium. Along with adequate non-pharmacological interventions, judicious use of antipsychotics is still recommended.
OBJECTIVES: Family conflict and family functioning were regarded as changeable factors associated with complicated grief (CG) and major depressive disorder (MDD) in the bereaved families of patients with advanced cancer, although the evidence is limited. We explored the family functioning associated with CG and MDD developing either independently or co-morbidly in the bereaved families of patients with advanced cancer who died in palliative care units (PCUs).
METHODS: This study comprised a nationwide cross-sectional questionnaire survey of bereaved family members of cancer patients who died in Japanese PCUs participating in evaluation of the quality of end-of-life care.
RESULTS: A total of 529 questionnaires (69.2%) were returned, and we analyzed a total of 458 responses. A total of 14.2% of participants were considered as having CG, 22.5% as having moderate to severe depression, and 9.6% as having co-morbid symptoms. Multivariate logistic regression analysis revealed that many family members insulted or yelled at one another (odd ratio (OR): 2.99, p=0.046; OR:2.57, p=0.033), and conflict regarding what is meant by a good death (OR:3.60, p=0.026; OR:4.06, p=0.004) was significantly positively associated with CG, MDD, and co-morbid symptom.
CONCLUSIONS: Specific family conflicts may increase the incidence of CG, MDD, and co-morbid symptoms in the bereaved families of patients with advanced cancer. Our results may encourage health care providers to approach discussions about end-of-life issue with the patient and their family in advance, especially focusing on what is considered a good death for the patient, which may prevent or resolve the family conflict.
CONTEXT: Evaluation of end-of-life care is a key element in quality improvement, and population-based mortality follow-back designs have been used in several countries. This design was adapted to evaluate a Good Death in Japan.
OBJECTIVES: This study aimed to explain the scientific background and rationale for assessing the feasibility of a mortality follow-back survey using a randomized design.
DESIGN: We utilized a cross-sectional, questionnaire survey to assess feasibility using response rate, sample representativeness, effect on response rate with two methods, and survey acceptability.
SETTING/PARTICIPANTS: The subjects were 4,812 bereaved family members of patients who died from the major five causes of death: cancer, heart disease, cerebrovascular disease, pneumonia, or kidney failure, using mortality data.
RESULTS: Overall, 682 (14.2%) questionnaires could not be delivered, and 2,294 (55.5%) family members agreed to participate in the survey. There was little difference in the distribution of characteristics between the study subjects and the full population, and sample representativeness was acceptable. Sending the questionnaire with a pen achieved a higher response rate than without (weighted: 48.2% vs. 40.8%; p<0.001). In follow-up contact, there was no difference in response rate between resending the questionnaire and a reminder letter alone (weighted: 32.9% vs. 32.4%; p=0.803). In total, 84.8% (weighted) of the participants agreed with improving quality of care through this kind of survey.
CONCLUSIONS: This study demonstrated the feasibility of conducting a population-based mortality follow-back survey using a randomized design. An attached pen with the questionnaire was effective in improving the response rate.
Objectives: The objectives of this study are to investigate how many advanced cancer patients became unconscious or non-communicative after pharmacological treatment for delirium, and to explore whether existing delirium assessment tools can successfully evaluate its severity at the end of life.
Methods: This was a secondary analysis of a registry study that examined the efficacy and safety of antipsychotics for advanced cancer patients with delirium. A total of 818 patients were recruited from 39 specialized palliative care services in Japan. The severity of delirium was measured using the Richmond Agitation-Sedation Scale-Palliative care version, the Delirium Rating Scale-Revised-98 (DRS-R-98), and the Nursing Delirium Screening Scale (Nu-DESC) on Day 3. Data from 302 patients with motor anxiety with an Agitation Distress Scale score =2 on Day 0 were analyzed for this study. The patients were categorized into four treatment response groups: complete response (CR: no agitation and fully communicative), partial response (PR: no/mild agitation and partially communicative), unconscious/non-communicative (UC), and no change (NC).
Results: On Day 3, 29 (10%; 95% confidence intervals (CI), 7-13) and 2 (1%; 95% CI, 0-2) patients became unconscious and non-communicative, respectively. Forty-four patients were categorized as CR, 97 as PR, 31 as UC, and 96 as NC. The scores of the DRS-R-98 and Nu-DESC in the UC group were rated higher than patients in the NC group were.
Conclusions: A considerable number of cancer patients with delirium became unconscious or non-communicative. Existing delirium assessment tools may be inappropriate for measuring the severity of delirium in end-of-life.
Background: The characteristics of physician communication with patients at the end of life (EOL) in East Asia have not been well studied. We investigated physicians' communications with imminently dying patients with cancer and their families in palliative care units (PCUs) in Japan, South Korea, and Taiwan.
Methods: This observational study included patients with cancer newly admitted and deceased during their first admission to 39 PCUs in three countries. We evaluated 1) the prevalence and timing of informing patients and families of patients' impending death and 2) the prevalence of communication to assure the families of the patient's comfort.
Results: We analyzed 2138 patients (Japan: 1633, South Korea: 256, Taiwan: 249). Fewer Japanese (4.8%: 95% confidence interval [95% CI], 3.8%–5.9%) and South Korean (19.6%: 95% CI, 15.2%–25.0%) patients were informed of their impending death, whereas 66.4% (95% CI, 60.2%–72.1%) of Taiwanese were informed; among all three countries, =90% of families were informed. Although most patients in all three countries and the families in South Korea and Taiwan were informed of the impending death greater than or equal to four days before death, 62.1% (95% CI, 59.6%–64.6%) of Japanese families were informed less than or equal to three days prior. Most families in all three countries received assurance that the patient would remain comfortable (could hear until death, no distress with death rattle or respiration with mandibular movement).
Conclusions: Physicians in Taiwan communicated about patient's impending death most frequently, and physicians in all three countries generally provided assurance to families that the patients would remain comfortable. Further studies should explore the reasons for these differences and the effects of such communications in East Asia.
OBJECTIVE: The objectives of this study were to identify barriers to end-of-life discussion with advanced cancer patients and their families as perceived by oncologists, certified/specialized nurses in cancer nursing (hereafter, collectively referred to as 'nurses') and medical social workers, as well as to clarify their opinions about effective strategies to facilitate end-of-life discussion.
METHODS: A questionnaire survey was distributed to 4354 medical professionals working at 402 designated regional cancer hospitals in Japan. Responses were obtained from 494 oncologists (valid response rate 30.7%), 993 nurses (46.7%) and 387 medical social workers (48.1%).
RESULTS: Among the barriers to end-of-life discussion with advanced cancer patients, factors related to patients and families, such as 'Family members' difficulty accepting loved one's poor prognosis', were recognized as the most important issues, which was the common view shared across the three types of medical professionals who participated in this study. Nurses and medical social workers were significantly more likely than oncologists to recognize as important issues 'Health care team disagreement about goals of care' and 'Lack of training to have conversations for end-of-life discussion'. To facilitate end-of-life discussion, 'providing mental and emotional support for the patients and their families after end-of-life discussion' was needed most as perceived by the respondents regardless of their profession.
CONCLUSIONS: Barriers impeding end-of-life discussion were factors related to patients and their families, and oncologists' close cooperation with nurses and medical social workers is important in providing emotional support for patients and families. To facilitate end-of-life discussion, it is important to share information on patients' prognosis and goals for treatment among oncologists and other medical professionals, as well as strengthen communication skill of these medical professions.
BACKGROUND: Antimicrobials are frequently prescribed to terminally-ill patients with cancer; however, physicians' practice patterns regarding antimicrobial use vary widely. This study aimed to systematically identify factors that determine physicians' attitudes toward the management of infectious diseases in terminally-ill patients with cancer.
METHODS: A nationwide cross-sectional survey involving 600 oncologists, 600 infectious diseases physicians, 600 palliative care physicians, and 220 home care physicians was conducted between November 2017 and January 2018. The primary endpoint was physicians' attitudes toward the management of infectious diseases in terminally-ill patients with cancer with a few weeks of prognosis. Physicians' beliefs regarding management of infectious diseases as well as physician-perceived 'good death' were also assessed (1=strongly disagree-6=strongly agree).
RESULTS: There were 895 (44.3%) analyzable response, and average scores of physicians' attitudes ranged between 2.69 and 4.32 In total, 241 (27%; 95%CI=24-30) to 691 (78%; 95%CI=75-81) respondents showed proactive attitudes toward various infectious diseases management. In linear regression analysis, determinants of proactive attitudes included: physicians' belief that examination and treatment will improve quality of life and prognosis and reduce suffering (ß=0.32, t=9.99, p=0.00); greater physician-perceived importance on receiving enough treatment (ß=0.09, t=2.88, p=0.00) and less importance on dying a natural death (ß=-0.07, t=-2.14, p=0.03) for a 'good death'; working at a tertiary care hospital (ß=0.16, t=4.40, p=0.00); and not being a home care physician (ß=-0.20, t=-5.51, p=0.00) or palliative care physician (ß=-0.12, t=-3.64, p=0.00).
CONCLUSIONS: Physicians have divergent attitudes toward the management of infectious diseases in terminally-ill patients with cancer. Reflection by physicians on their own beliefs and perceptions regarding infectious disease management and a 'good death' may help provide the best end-of-life care.
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.
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 and objective: Though idiopathic pulmonary fibrosis (IPF) has worse outcomes compared to most malignancies, patients with IPF receive poor access to optimal palliative care. This study aimed to characterise the practice of pulmonologist’s regarding palliative care and end of life communication for patients with IPF and identify perceived difficulties and barriers thereto.
Methods: Self-administered questionnaires were sent by mail to representative pulmonologists from Shizuoka prefecture, Japan. Physician-reported practice, difficulties, timing of end of life communication and barriers related to palliative care were investigated.
Results: Among the 135 participants, 130 (96%) completed the questionnaire. Most of the participants reported that patients with IPF complained of dyspnoea and cough. However, less morphine was prescribed for IPF than for lung cancer. The participants experienced greater difficulty in providing palliative care for IPF than for lung cancer. Moreover, actual end of life discussions in patients with IPF were conducted later than the physician-perceived ideal timing. Among the barriers identified, few established treatment and difficulty in predicting prognosis [odds ratio (OR) 2.0; p = 0.04], discrepancies in understanding and care goals among patients, family and medical staff (OR 2.2; p = 0.03) and inadequate communication about goal of care (OR 2.3; p = 0.003) were significantly associated with the physician-perceived difficulties in providing palliative care for patients with IPF.
Conclusions: Pulmonologists experienced greater difficulty in providing palliative care to patients with IPF than to those with lung cancer. Clinical studies on the optimal palliative care for patients with IPF are urgently required.
Purpose: Advance care planning is an important component of quality palliative care. In Asian countries, few randomized clinical trials have been reported. This pilot randomized-controlled trial examined the effects of brief nurse intervention with visual materials on the goal-of-care preference, cardiopulmonary resuscitation (CPR) preference, and designation of a health care proxy.
Methods: This randomized clinical trial was performed from January to February 2018 on elderly Japanese patients with chronic disease. The patients were randomly assigned to a control group (brief nurse intervention using verbal descriptions) or intervention group (using visual materials). The primary endpoint was goal-of-care preference, and secondary outcomes included the following: (1) CPR preference, (2) presence of a designated health care proxy, (3) knowledge of CPR, and (4) readiness for advance care planning. Outcome measures were obtained at baseline and just after completion of the intervention.
Results: A total of 220 patients were enrolled (117 in the intervention group and 103 in the control group). All patients completed post-intervention measurement. There was no significant difference between the groups in any of the outcome measures, while <5% of the participants wanted life-prolonging care as the goal of care at the baseline. Before/after comparisons indicated that, in both groups, the number of participants who designated a health care proxy significantly increased (29% to 65% vs. 22% to 52%, respectively; p < 0.001 each); and the knowledge and readiness scores significantly increased. Moreover, there was a significant increase in the number of patients who did not want CPR (55% to 67% with a terminal condition, p = 0.003; 67% to 80% with a bedridden condition, p < 0.001) in the intervention group.
Conclusions: Brief nurse intervention increased documentation of a patient-designated health care proxy and improved the knowledge of CPR and patient readiness. Visual materials might help patients to imagine the actual situation regarding CPR.
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: To improve the quality of advance care planning (ACP) in primary care, it is important to understand the frequency of and topics involved in the ACP discussion between patients and their family physicians (FPs).
Methods: A secondary analysis of a previous multicenter cross-sectional observational study was performed. The primary outcome of this analysis was the frequency of and topics involved in the ACP discussion between outpatients and FPs. In March 2017, 22 family physicians at 17 clinics scheduled a day to assess outpatients and enrolled patients older than 65 years who were recognized by FPs as having regular visits. We defined three ACP discussion topics: 1) future decline in activities of daily living (ADL), 2) future inability to eat, and 3) surrogate decision makers. FPs assessed whether they had ever discussed any ACP topics with each patient and their family members, and if they had documented the results of these discussions in medical records before patients were enrolled in the present study. We defined patients as being at risk of deteriorating and dying if they had at least 2 positive general indicators or at least 1 positive disease-specific indicator in the Japanese version of the Supportive and Palliative Care Indicators Tool.
Results: In total, 382 patients with a mean age of 77.4 ± 7.9 years were enrolled, and 63.1% were female. Seventy-nine patients (20.7%) had discussed at least one ACP topic with their FPs. However, only 23 patients (6.0%) had discussed an ACP topic with family members and their FPs, with the results being documented in their medical records. The topic of future ADL decline was discussed and documented more often than the other two topics. Patients at risk of deteriorating and dying discussed ACP topics significantly more often than those not at risk of deteriorating and dying (39.4% vs. 16.8%, p < 0.001).
Conclusion: FPs may discuss ACP with some of their patients, but may not often document the results of this discussion in medical records. FPs need to be encouraged to discuss ACP with patients and family members and describe the decisions reached in medical records.
Context: Dyspnea is one of the most distressing symptoms for terminally ill cancer patients and a predictor of poor prognosis. Identification of simple clinical signs, such as heart rate, indicating clinical course of each patient is of value.
Objectives: To explore the potential association between heart rate and reversibility of the symptom, treatment response to palliative intervention, and survival in terminally ill cancer patients with dyspnea at rest.
Methods: This is a secondary analysis of a multicenter prospective cohort study of patients with advanced cancer to validate multiple prognostic tools. In the patients with dyspnea at rest at the baseline, we examined a potential association between heart rate and the reversibility of dyspnea and refractoriness to palliative treatment using logistic regression analysis. Survivals were compared using the Cox proportional hazards model among four groups with different levels of the heart rate (=74, 75–84, 85–97, and =98).
Results: A total of 2298 patients were enrolled, and 418 patients (18%) had dyspnea at rest. Reversibility of dyspnea was significantly higher in the patients with lower heart rate (P for trend = 0.008), and the refractoriness to palliative treatment tended to be higher in the patients with higher heart rate (P for trend = 0.101). The median survival for each heart rate quartile groups was significantly higher in the lower heart rate group (24 vs. 21 vs. 14 vs. 9 days; heart rate =74, 75–84, 85–97, and =98, respectively; log-rank P < 0.001).
Conclusion: Heart rate may help clinicians to make the prediction of the patient's clinical course more accurate.