BACKGROUND: The prediction of impending death is important for providing appropriate end-of-life care; however, limited information is currently available on the signs of impending death in non-cancer patients. Furthermore, although vital signs are routinely measured in clinical practice, changes in vital signs in the dying phase in non-cancer patients have not yet been elucidated in detail.
METHODS: We herein conducted a retrospective study to clarify changes in vital signs before death in noncancer patients. Non-cancer patients who died in a hospital in Japan between April 2017 and April 2018 were examined. Vital signs for up to seven days before death were analyzed, with the average value of each vital sign approximately every twelve hours being plotted. We divided data into two periods: from days -7 to -4 and from day -3 to death. We used a linear mixed model in the two periods, and t-tests were performed to assess whether the gradient of the line across the time variable significantly differed from zero.
RESULTS: Data from 47 non-cancer patients were analyzed. Systolic blood pressure (P<0.001), diastolic blood pressure (P<0.001), and oxygen saturation (P=0.001) significantly decreased from day -3 to death, whereas no significant changes were noted in any vital sign in days -7 to -4.
CONCLUSIONS: Based on the present results, changes in blood pressure and oxygen saturation may be useful indicators of prognosis within three days of death. Further research on clinical signs and their diagnostic characteristics for impending death in non-cancer patients is needed.
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: A better understanding of differences between the preferences of the general public and the recommendations of healthcare providers with regard to end-of-life (EOL) care may facilitate EOL discussion.
Methods: The aim of this study was to clarify differences between preferences of the general public and recommendations of healthcare providers with regard to treatment, EOL care, and life-sustaining treatment (LST) based on a hypothetical scenario involving a patient with advanced cancer. This study comprised exploratory post-hoc analyses of “The Survey of Public Attitude Towards Medical Care at the End of life”, which was a population based, cross-sectional anonymous survey in Japan to investigate public attitudes toward medical care at the end of life. Persons living in Japan over 20 years old were randomly selected nationwide. Physicians, nurses, and care staff were recruited at randomly selected facilities throughout Japan. The general public data from the original study was combined to the data of healthcare providers in order to conduct exploratory post-hoc analyses. The preferences of the general public and recommendations of healthcare providers with regard to EOL care and LST was assessed based on the hypothetical scenario of an advanced cancer patient.
Results: All returned questionnaires were analyzed: 973 from the general public, 1039 from physicians, 1854 from nurses, and 752 from care staff (response rates of 16.2, 23.1, 30.9, and 37.6%, respectively). The proportion of the general public who wanted “chemotherapy or radiation”, “ventilation”, and “cardiopulmonary resuscitation” was significantly higher than the frequency of these options being recommended by physicians, nurses, and care staff, but the general public preference for “cardiopulmonary resuscitation” was significantly lower than the frequency of its recommendation by care staff.
Conclusion: Regarding a hypothetical scenario for advanced cancer, the general public preferred more aggressive treatment and more frequent LST than that recommended by healthcare providers.
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.
Background: The prediction of short-term survival is important for noncancer patients and their families. Although a markedly reduced oral intake by cancer patients suggests a poor prognosis, the survival times of noncancer patients after its onset remain unclear. We herein investigated the time from a marked reduction in oral intake to death in noncancer patients as well as factors associated with their subsequent survival.
Methods: We conducted a retrospective medical record review of noncancer patients who died in our hospital between April 2017 and April 2018. We recorded the day when oral intake markedly decreased and the date of death. We extracted data on age, gender, the Charlson Comorbidities Index, mean daily fluid volume, laboratory test results, and vital signs converted to the Shock Index (SI). We used Cox's proportional hazards models to assess relationships between these factors and survival times after the onset of a markedly reduced oral intake.
Results: We analyzed data from 44 noncancer patients. The median time from the onset of a markedly reduced oral intake to death was 16.5 days. Based on Cox's proportional hazards models, only SI >= 1.0 at the onset of a markedly reduced oral intake correlated with survival times (hazard ratio: 5.89, 95% confidence interval (CI): 1.71-20.1, P = .005).
Conclusion: Noncancer patients died a median of 16.5 days after the onset of a markedly reduced oral intake, and SI >=1.0 correlated with subsequent survival times. These results will provide novel insights into the prognosis of noncancer patients at the end of life.
Using the Ministry of Health, Labour and Welfare national data on perspectives toward medical care at the end of life, this study examined the current status of engagement in advance care planning (ACP) activities among physicians and nurses in Japan and associated factors. Only 28.7% of physicians and 27.6% of nurses answered that they were engaging their patients/clients in ACP. Multinomial regression analysis revealed that more frequent involvement in caring for dying patients was associated with ACP engagement for both physicians and nurses. Increased years of clinical practice experience and working in a hospital were associated with decreased likelihood of nurses' ACP engagement. Completion of training designed to promote patient self-determination at the end of life was associated with both physicians' and nurses' ACP engagement. It is recommended that health care professionals be encouraged to complete such training to promote patients' autonomy through ACP.
Background: Advance directives (ADs) are seldom discussed between primary care physicians (PCPs) and their patients, especially those with noncancer diseases. The aim was to identify the factors associated with discussing AD by noncancer patients with their physicians.
Methods: This cross-sectional study was conducted in a hospital or clinic from October to December 2017. Physicians chose eligible noncancer patients aged 20 years or older to respond to an anonymous self-completed questionnaire inquiring about the objective variable "I want to discuss AD with my doctor," as well as basic characteristics, and facilitators and barriers to discussing AD identified in previous studies. The physicians responded to a survey comprising the Palliative Performance Scale (PPS) and inquiring about the disease category for each patient. Data were analyzed using binomial logistic regression analysis.
Results: A total of 270 patients (valid response rate, 79.6%) were included. Multivariate analysis identified a period of visit to the study site = 3 years (odds ratio [OR], 2.07; 95% confidence interval [CI], 1.05-4.10), physicians who are very good at taking care of patients’ disease (OR, 12.68; 95% CI, 1.12-143.22), and patients’ worry about their quality of life (QOL) in the future (OR, 2.69; 95% CI, 1.30-5.57) as facilitators for discussing AD with physicians, and PPS = 90 (OR, 0.51; 95% CI, 0.26-0.98) as a barrier.
Conclusions: Our study indicates that patients' future QOL concerns, a long period of visit to a hospital, and the presence of physical symptoms were associated with the willingness of noncancer patients to discuss AD with PCPs.
CONTEXT: When discussing end-of-life issues with cancer patients, the addition of reassurance statements is considered helpful. However, patients' preferences for such statements have not been systematically demonstrated.
OBJECTIVES: The objectives of this study were to clarify if phrases with additional reassurance statements would be more preferable to phrases without them and explore variables associated with patients' preferences.
METHODS: In a cross-sectional survey, 412 cancer patients assessed their own preferences for phrases with/without additional statements using a six-point scale (1 = not at all preferable; 6 = very preferable). These included the statements of "hope for the best and prepare for the worst" ("hope/prepare") when discussing prognosis; symptom palliation when discussing code status; and specific goals, continuity of care, and nonabandonment when discussing hospice referral. We evaluated demographic data and the coping style and conducted multivariate regression analysis.
RESULTS: Compared with the phrase of life expectancy (i.e., median + typical range) alone [mean (SD), 3.5 (1.2); 95% CI, 3.4-3.6], the phrase with the additional "hope/prepare" statement was more preferable [3.8 (1.4); 3.7-3.9]. Compared with the phrase of do-not-resuscitate alone (3.1(1.3); 3.0-3.3), the phrase with the additional statement of symptom palliation was more preferable [3.9 (1.3); 3.7-4.0]. Compared with the phrase of hospice referral alone [3.4 (1.2); 3.3-3.5], phrases with the addition of a specific goal [3.9 (1.0); 3.8-4.0], specific goal and continuity (4.4(1.0); 4.3-4.5), and specific goal, continuity, and nonabandonment [4.8 (1.2); 4.7-4.9] were more preferable. In multivariate analyses, task-oriented coping was significantly correlated with preferences for phrases including additional reassurance statements.
CONCLUSION: Cancer patients systematically preferred reassurance statements. In end-of-life discussions, especially with patients with task-oriented coping, clinicians may provide additional reassurance statements.
CONTEXT: Understanding the prevalence and characteristics of primary care outpatients being at risk of deteriorating and dying may allow general practitioners (GPs) to identify them, and initiate end-of-life discussions.
OBJECTIVES: This study aimed to investigate the prevalence and characteristics of primary care outpatients being at risk of deteriorating and dying, as determined by the Supportive and Palliative Care Indicators Tool (SPICT™).
METHODS: A multicenter cross-sectional observational study was conducted at 17 clinics with 22 GPs. We enrolled all patients aged =65 years who visited the GPs in March 2017. We used the Japanese version of the SPICT™ to identify patients being at risk of deteriorating and dying. We assessed the demographic and clinical characteristics of enrolled patients.
RESULTS: In total, 382 patients with a mean age of 77.4 ± 7.9 years were investigated. Sixty-six patients (17.3%) had =2 positive general indicators or =1 positive disease-specific indicator in the SPICT-JP. Patients with dementia/frailty, neurological disease, cancer, and kidney disease showed a significantly elevated risk of deteriorating and dying, while patients with other specific disease did not. The patients at risk were significantly older and less likely to be living with family at home. They also had a higher Charlson Comorbidity Index score and a lower Palliative Performance Scale score.
CONCLUSION: Among primary care outpatients aged over 65 years, 17.3% were at risk of deteriorating and dying regardless of their estimated survival time, and many outpatients at risk were not receiving optimal multidisciplinary care.
BACKGROUND: Identifying patients who require palliative care approach is challenging for family physicians, even though several identification tools have been developed for this purpose.
OBJECTIVE: To explore the prevalence and characteristics of family practice patients who need palliative care approach as determined using Supportive and Palliative Care Indicators Tool (SPICT™, April 2015) in Japan.
DESIGN: Single-center cross-sectional study.
SETTING/SUBJECTS: We enrolled all patients =65 years of age who visited the chief researcher's outpatient clinic in October 2016.
MEASUREMENTS: We used Japanese version of SPICT (SPICT-J) to identify patients who need palliative care approach. We assessed patients' backgrounds and whether they had undergone advance care planning with their family physicians.
RESULTS: This study included 87 patients (61 females) with a mean age of 79.0 ± 7.4 years. Eight patients (9.2%) were identified as needing palliative care approach. The mean age of patients who needed this approach was 82.3 ± 8.3 years and main underlying conditions were heart/vascular disease (37.5%), dementia/frailty (25.0%), and respiratory disease (12.5%). Only two of eight patients identified as needing palliative care approach had discussed advance care planning with their family physicians.
CONCLUSIONS: In family practice, 9.2% of outpatients =65 years of age were identified as needing palliative care approach. Family physicians should carefully evaluate whether outpatients need palliative care approach.
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.
Background: Few studies have simultaneously collected quantitative data regarding the positive and negative effects of participating in post-bereavement surveys.
Methods: We conducted a cross-sectional postal questionnaire survey in October 2013. Potential participants were caregivers for family members who had died in four inpatient palliative care units, two home hospices, and a general hospital. We collected opinions regarding the distress and benefit of completing a post-bereavement survey. After collecting data, we provided feedback to participating institutions in the form of study results and de-identified open-ended comments.
Results: Of 692 potential participants, 596 were sent questionnaires; 393 returned questionnaires were valid and analyzed. Of the respondents, 62% reported being distressed by completing the questionnaire. Female participants and those who were mentally ill during the caregiving period reported more distress. However, 86% of respondents reported they found the questionnaire beneficial. Better quality of end-of-life care and respondent depression were associated with more benefit. Major benefits were: contributing to the development of end-of-life care as a family (63%); expressing gratitude to the hospital and medical staff (60%); and looking back and reflecting on the end-of-life period (40%). Feeling benefit was not correlated with feeling distressed (P = -0.02).
Conclusion: In this large-scale study on the effects of post-bereavement surveys in Japan, many bereaved family members reported that completing the survey was beneficial. In addition to possibly having feelings of distress, post-bereavement surveys might also be beneficial to end-of-life care facilities.
OBJECTIVE: The psychological and psychiatric symptoms of terminally ill cancer patients are highly problematic and have been associated with greater burden among caregivers. Until now, the extent of these problems in the home care setting was unclear.
METHODS: This retrospective study was conducted as part of a nationwide survey from the perspective of bereaved family members in Japan (J-HOPE3). The bereaved family members rated the symptoms of delirium and suicidal ideation of patients with cancer, and the sleeplessness and depressed mood of family caregivers utilizing home care services in the one month before the patients' deaths. Regression analyses were performed to identify factors associated with caregivers' sleeplessness or depressed mood.
RESULTS: Of the 532 subjects analyzed, between 17% and 65% of patients experienced various symptoms of delirium, and 27% suicidal ideation. Among family caregivers, 60% experienced sleeplessness and 35% experienced depressed mood at least once during the week. Caregivers' psychological symptoms were associated with their own poor health status, being the spouse of the patient, and the patients' psychological or psychiatric symptoms. To manage patients' symptoms, 11% of caregivers had consulted psychiatrists or psychologists while another 11% wanted to do so.
CONCLUSION: Psychological problems assessed were common among patients with cancer and their family caregivers in the one month of home care prior to the patient's death. An effective complementary care system, run by home-visit physicians, nurses, and experts in mental disorders, is needed.
CONTEXT: Although there has long been debate about physicians' intentions and what physicians consider to be proportionally appropriate when performing palliative sedation, few large studies have been performed.
OBJECTIVES: To identify physicians' intentions when starting continuous deep sedation and to clarify what factors determine whether physicians regard sedation as proportionally appropriate in relation to expected survival, the patients' wishes, and refractoriness.
METHODS: A nationwide questionnaire survey of Japanese palliative care specialists was performed from August to December 2016. We defined continuous deep sedation as the continuous use of sedatives to relieve intolerable and refractory symptoms with the loss of consciousness until death.
RESULTS: Of the 695 palliative care specialists enrolled, 440 were analyzed (response rate, 69%). A total of 95 and 87% of the physicians reported that they explicitly intended to perform symptom palliation and decrease consciousness levels, respectively. Moreover, 38% answered that they explicitly intended to maintain unconsciousness until death, and 11% reported that they intended to shorten survival to some extent. The respondents considered that continuous deep sedation is more appropriate when the predicted survival is shorter, the patients' wishes are consistent and clear, and confidence in the refractoriness of symptoms is higher.
CONCLUSIONS: Japanese palliative care specialists explicitly intend to control symptoms and reduce the level of consciousness when performing continuous deep sedation, but there are differences in their intentions with regard to maintaining unconsciousness until death. Predicted survival, patients' wishes, and confidence in refractoriness are associated with physicians' judgement that sedation is proportionally appropriate.
Background: Provider-centered factors contribute to unexplained variation in the quality of death (QOD). The relationship between healthcare providers (HCPs) and patients, bidirectional communication, and consistency of longitudinal care planning are important provider-centered factors.
Objective: To explore whether the level of trust in HCPs, the quality of continuity of care, and the level of coordination of care among home HCPs are associated with the QOD for cancer patients dying at home.
Design: This study was a part of a nationwide multicenter questionnaire survey of bereaved family members of cancer patients evaluating the quality of end-of-life care in Japan.
Setting/Subjects: We investigated 702 family members of cancer patients who died at home.
Measurements: The QOD was evaluated from nine core domains of the short version of the Good Death Inventory (GDI). We measured five factors on a Likert scale, including patient and family trust in HCPs, continuity of care by home hospice and hospital physicians, and coordination of care among home hospice staff.
Results: A total of 538 responses (77%) were obtained and 486 responses were analyzed. Trust in HCPs was correlated with the GDI score (r = 0.300–0.387, p < 0.001). The quality of care coordination was associated with the GDI score (r = 0.242, p < 0.001).
Conclusions: Trust of the patient and family in home hospice staff, as well as coordination of care among hospice staff, are associated with the QOD for cancer patients dying at home.
Le nombre de décès au Japon augmente et de nombreuses personnes souhaitent mourir à leur domicile, ce qui représente un défi pour la politique sanitaire. Traditionnellement, les spécialistes de soins palliatifs sont, au Japon, basés dans les hôpitaux et dédiés aux malades du cancer. L'évolution récente des organisations gouvernementales et cliniques, de l'université et du grand public contribue à la reconnaissance des besoins en soins palliatifs des personnes âgées et des malades souffrant de maladies autres que le cancer.
[D'après résumé revue]