Les décès sont potentiellement fréquents à l’hôpital et notamment en gériatrie. Les internes en médecine se déclarent en difficulté pour assurer un accompagnement médical de qualité dans les situations de fin de vie. Afin de les soutenir dans leur formation clinique nous rapportons l’expérience d’ateliers d’expression mensuels, neutres, confidentiels pour leur permettre d’adapter leur pratique et prévenir les risques psychosociaux inhérents à la confrontation avec la mort.
Advance directives (ADs) allow individuals to legally determine their preferences for end-of-life (EOL) medical treatment and designate a health-care proxy to act on their behalf prior to losing the cognitive ability to make informed decisions for themselves. An interprofessional group of researchers (law, nursing, medicine, and social work) conducted an exploratory study to identify the differences in quality-of-life (QOL) language found within the AD state statutes from 50 US states and the District of Columbia. Data were coded using constant comparative analysis. Identified concepts were grouped into 2 focus areas for EOL discussions: communication/awareness of surroundings and activities of daily living. Language regarding communication/awareness of surroundings was present in the half of the statutes. Activities of daily living were addressed in only 18% of the statutes. Only 3 states (Arkansas, Nevada, and Tennessee) specifically addressed QOL. Patients are best served when professionals, regardless of discipline, can share and transform knowledge for patients in times of crisis and loss in ways that are empathetic and precise. Interprofessional collaborative practice (IPCP) comprises multiple health workers from different professional backgrounds working together with patients, families, and communities to deliver the highest quality of care. One of the major competencies of IPCP encompasses values and ethics. Interprofessional collaborative practice is offered as the means to deliver person-centered value-based care when facilitating these crucial dialogs and making recommendations for change.
Deep brain stimulation (DBS) is an implanted neurological device effective in treating motor symptoms of Parkinson disease (PD), such as tremor, rigidity, and bradykinesia. More than 150,000 patients worldwide have been implanted DBS, including its continued benefit or potential complications, yet, no published articles provide guidance for hospice providers regarding the management of DBS devices in end-of-life care. With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to adress clinical and ethical challenges in optimizing DBS for patients with PD nearing the end of life.
Context: Early integration of palliative care (PC) into adult oncology practice has been shown to improve quality of life and health care utilization; however, little is known about PC in young adults with cancer.
Objectives: Our primary objective was to determine rates and timing of PC consultation in young adult patients with advanced solid tumor cancer at a single institution.
Methods: We conducted a retrospective analysis of young adults of age 18–39 years with advanced solid tumor malignancy at an urban academic medical center between June 1, 2014 and June 30, 2015.
Results: Of 129 patients identified, 70 of 129 (54%) had a PC consult and 34 of 70 were inpatient-only consults. PC consults occurred for a median of 104 days before death, and for those with inpatient-only consults, PC consults occurred for a median of 18 days. Patients with worse recent Eastern Cooperative Oncology Group (ECOG) performance status were more likely to have had a PC consult (p < 0.001). Of the patients who died during the study period, patients with PC consults were more likely to have been hospitalized (72% vs. 47%), in the intensive care unit (21% vs. 0%), in the emergency room (ER) (72% vs. 47%), and have received chemotherapy (17% vs. 0%) within 30 days of death compared with those who did not have a consult; however, these differences were not statistically significant.
Conclusion: In this analysis, over half of young adults with advanced solid tumors received PC consults. PC consult typically occurred for one year after diagnosis and about three months before death. Additional research is needed to identify how to better integrate PC early in this patient population and assess the resulting impact.
Background: With an aging population, and most deaths due to a nonmalignant cause, there is urgency to review the nature of end-of-life care (EoLC) to minimize gaps in service provision. Early introduction of EoLC benefits patient and carers, so identification of those at risk of dying 6 to 12 months before death is highly desirable.
Objective: To identify the most predictive patient characteristics of a risk of death within 6 to 12 months as a precursor to developing a user-friendly primary care screening tool.
Design: Retrospective case–control study.
Setting/Subjects: Australian general practice. Cases were patients aged =70 years who died in the previous 5 years. Controls were matched for age and gender. Exclusion criteria were: no available practice records for the 18 months before death (cases) and data collection (controls); no corroborated evidence of death.
Measurements: Supportive and Palliative Care Indicators Tool (SPICT) indicators of deterioration in medical records.
Results: There were 215 deaths and 267 controls. The most predictive patient characteristics of a risk of death within 6 to 12 months are: deteriorating performance status, weight loss, persistent symptoms, request for palliative care or treatment withdrawal, impaired activities of daily living, falls ± fractured hip, neurological deterioration, advanced lung disease, and estimated glomerular filtration rate <30 mL/min/1.73 m2 with deteriorating health. Our predictive model has a sensitivity and specificity of 67% and 87%, respectively, with a predictive accuracy of 78%.
Conclusions: This model predicts risk of death within 6 to 12 months with acceptable reliability in a general practice setting and has the potential to be incorporated into clinical practice and electronic records.
Sarah Eddy, photographe, a l'idée du Carnet des derniers voeux suite à la disparition inattendue de sa mère. Pourquoi ne pas tenir, de son vivant, un journal de bord dans lequel on puisse écrire ses voeux, ses souvenirs, mais également laisser une trace de ce qui a compté pour nous, des moments forts de notre vie, des instants qui nous ont marqués, des traits de personnalité qui nous caractérisaient ? Ce journal atypique pourrait alors servir de guide à la famille, pour apporter une aide dans l'épreuve inévitable de la mort.
Laurent Ciccone raconte l'histoire de Luc, une tranche de sa vie durant laquelle, héros malgré lui, il chute et se relève. Durant cette tranche de vie découpée dans le vif, Luc souffre du coeur et du genou, part en vacances en Italie avec des potes, rit beaucoup de tout ou de rien, et pleure, pleure un ami qui meurt. La mort profite des phrases comme un train, des rails, pour coudoyer la vie, la croiser sans crier gare à moins que ce ne soit l'inverse.
Ce recueil de lettres témoigne de six années de rencontres hebdomadaires de l'auteur avec les patients de l'unité de soins palliatifs de l'hôpital de La Seyne-sur-Mer. Illustrés d'oeuvres réalisées par Michel Cadéo, ces échanges révèlent la profondeur intérieure de personnes en fin de vie prises en charge dans cet établissement.
Cet ouvrage se compose d'une cinquantaine de fiches thématiques sur les soins palliatifs afin d'accompagner de façon expérimentée la fin de vie des patients : les principes éthiques, les acteurs, le temps, les moyens, l'expérience pour le patient et pour les équipes, les dispositifs singuliers, entre autres.
Purpose: To assess the accuracy of hospice staff in predicting survival of subjects admitted to hospice, exploring the factors considered most helpful by the hospice staff to accurately predict survival.
Methods: Five physicians and 11 nurses were asked to predict survival at admission of 827 patients. Actual and predicted survival times were divided into = 1 week, 2–3 weeks, 4–8 weeks, and = 2 months and the accuracy of the estimates was calculated. The staff members were each asked to score 17 clinical variables that guided them in predicting survival and we analyzed how these variables impacted the accuracy.
Results: Physicians’ and nurses’ accuracy of survival of the patients was 46% and 40% respectively. Survival was underestimated in 20% and 12% and overestimated in 34% and 48% of subjects. Both physicians and nurses considered metastases, comorbidities, dyspnea, disability, tumor site, neurological symptoms, and confusion very important in predicting patients’ survival with nurses assigning more importance to intestinal symptoms and pain too. All these factors, with the addition of cough and/or bronchial secretions, were associated with physicians’ greater accuracy. In the multivariable models, intestinal symptoms and confusion continued to be associated with greater predictive accuracy. No factors appreciably raised nurses’ accuracy.
Conclusions: Some clinical symptoms rated as relevant by the hospice staff could be important for predicting survival. However, only intestinal symptoms and confusion significantly improved the accuracy of physicians’ predictions, despite the high prevalence of overestimated survival.
CONTEXT: Although the literature recognizes the participation of patients in medical decisions as an important indicator of quality, there is a lack of consensus regarding the influence of advance directives (ADs) on reducing aggressive measures during end-of-life care involving cancer patients.
OBJECTIVE: A systematic review was conducted to analyze the influence of ADs on reducing aggressive end-of-life care measures for cancer patients.
METHOD: We searched the Medline, Embase, Web of Science, and Lilacs databases for studies published until March 2018 using the following keywords, without language restrictions: "advance directives," "living wills," "terminal care," "palliative care," "hospice care," and "neoplasms." Article quality was assessed using study quality assessment tools from the Department of Health and Human Services (NHLBI).
RESULTS: A total of 1,489 studies were identified; 7 met the inclusion criteria. The studies were recently published (after 2014, 71.4%). Patients with ADs were more likely to die at the site of choice (n = 3) and received less chemotherapy in the last 30 days (n = 1). ADs had no impact on intensive care unit admission (n = 1) or hospitalization (n = 1). One study found an association between ADs and referral to palliative care, but other did not find the same result.
SIGNIFICANCE OF RESULTS: Of the seven articles found, four demonstrated effects of ADs on the reduction in aggressive measures at the end of life of cancer patients. Heterogeneity regarding study design and results and poor methodological quality are challenges when drawing conclusions.
INTRODUCTION: While spirituality and quality of life (QOL) are essential components of end-of-life (EOL) care, limited studies have examined these constructs for indigenous peoples. Therefore, the purpose of this article was to examine the state of the science regarding spirituality and QOL at EOL for indigenous people, particularly Native Americans.
METHOD: The Arksey and O'Malley (2005) framework guided this scoping review, which examined 30 articles that included qualitative and quantitative studies, commentary papers, and reviews.
RESULTS: The findings identified five spiritual dimensions: the life and death journey, a belief in spirits, tribally grounded traditions, dominant cultural religion influences, and a family focus. QOL indicators included survivorship, optimization of holistic health, communication, and access to appropriate resources. Death rituals were important EOL elements.
DISCUSSION: Given the importance of spirituality to QOL for indigenous people, clinicians must be knowledgeable and responsive to indigenous spiritual needs to promote QOL at EOL.
The prescription of chemotherapy during the last weeks of a patient's life is a recognised criterion of decreasing quality of life but also survival. Targeted therapies have a particular efficiency and tolerance profile raising the question of their use in a palliative setting. Two patients were treated for a melanoma, at terminal stage, with poor efficiency of the symptomatic treatments. We introduced targeted therapies, which was previous treatments used in both patients.The evolution and benefits of the treatment was very different in our two patients and make us discuss the interest of targeted therapies in an end-of-life context and propose criteria for their maintenance or introduction in this indication. This discussion requires close collaboration between oncologists and palliative physicians and a very clear information given to patients and their relatives.
BACKGROUND/OBJECTIVE: The Centers for Medicare & Medicaid Services (CMS) reimburses clinicians for advance care planning (ACP) discussions with Medicare patients. The objective of the study was to examine the association of CMS-billed ACP visits with end-of-life (EOL) healthcare utilization.
DESIGN: Patient-level analyses of claims for the random 20% Medicare fee-for-service (FFS) sample of decedents in 2017. To account for multiple comparisons, Bonferroni adjusted P value <.008 was considered statistically significant.
SETTING: Nationally representative sample of Medicare FFS beneficiaries.
PARTICIPANTS: A total of 237,989 Medicare FFS beneficiaries who died in 2017 and included those with and without a billed ACP visit during 2016–17.
INTERVENTION: The key exposure variable was receipt of first billed ACP (none, >1 month before death).
MEASUREMENTS: Six measures of EOL healthcare utilization or intensity (inpatient admission, emergency department [ED] visit, intensive care unit [ICU] stay, and expenditures within 30 days of death, in-hospital death, and first hospice within 3 days of death). Analyses was adjusted for age, race, sex, Charlson Comorbidity Index, expenditure by Dartmouth hospital referral region (high, medium, or low), and dual eligibility.
RESULTS: Overall, 6.3% (14,986) of the sample had at least one billed ACP visit. After multivariable adjustment, patients with an ACP visit experienced significantly less intensive EOL care on four of six measures: hospitalization (odds ratio [OR] = .77; 95% confidence interval [CI] = .74–.79), ED visit (OR = .77; 95% CI = .75–.80), or ICU stay (OR = .78; 95% CI = .74–.81) within a month of death; and they were less likely to die in the hospital (OR = .79; 95% CI = .76–.82). There were no differences in the rate of late hospice enrollment (OR = .97; 95% CI = .92–1.01; P = .119) or mean expenditures ($242.50; 95% CI = -$103.63 to $588.61; P = .169).
CONCLUSION: Billed ACP visits were relatively uncommon among Medicare FFS decedents, but their occurrence was associated with less intensive EOL utilization. Further research on the variables affecting hospice use and expenditures in the EOL period is recommended to understand the relative role of ACP.
BACKGROUND: A critical barrier to improving the quality of end-of-life (EOL) cancer care is our lack of understanding of the mechanisms underlying variation in EOL treatment intensity. This study aims to fill this gap by identifying 1) organizational and provider practice norms at major US cancer centers, and 2) how these norms influence provider decision making heuristics and patient expectations for EOL care, particularly for minority patients with advanced cancer.
METHODS: This is a multi-center, qualitative case study at six National Comprehensive Cancer Network (NCCN) and National Cancer Institute (NCI) Comprehensive Cancer Centers. We will theoretically sample centers based upon National Quality Forum (NQF) endorsed EOL quality metrics and demographics to ensure heterogeneity in EOL intensity and region. A multidisciplinary team of clinician and non-clinician researchers will conduct direct observations, semi-structured interviews, and artifact collection. Participants will include: 1) cancer center and clinical service line administrators; 2) providers from medical, surgical, and radiation oncology; palliative or supportive care; intensive care; hospital medicine; and emergency medicine who see patients with cancer and have high clinical practice volume or high local influence (provider interviews and observations); and 3) adult patients with metastatic solid tumors and whom the provider would not be surprised if they died in the next 12 months and their caregivers (patient and caregiver interviews). Leadership interviews will probe about EOL institutional norms and organization. We will observe inpatient and outpatient care for two weeks. Provider interviews will use vignettes to probe explicit and implicit motivations for treatment choices. Semi-structured interviews with patients near EOL, or their family members and caregivers will explore past, current, and future decisions related to their cancer care. We will import transcribed field notes and interviews into Dedoose software for qualitative data management and analysis, and we will develop and apply a deductive and inductive codebook to the data.
DISCUSSION: This study aims to improve our understanding of organizational and provider practice norms pertinent to EOL care in U.S. cancer centers. This research will ultimately be used to inform a provider-oriented intervention to improve EOL care for racial and ethnic minority patients with advanced cancer.
BACKGROUND: Communication about the end of life is especially important in the family context, as patients and their families are considered as the care unit in palliative care. Open end-of-life communication can positively affect medical, psychological and relational outcomes during the dying process for patient and family. Regardless of the benefits of end-of-life conversations, many patients and their family caregivers speak little about relevant end-of-life issues.
AIM: To identify barriers that hinder or influence the discussion of end-of-life issues in the family context.
DESIGN: A systematic mixed-method review according to Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines.
DATA SOURCES: A systematic search of PsycInfo, CINAHL, PubMed and Web of Science was conducted and extended with a hand search. Peer-reviewed primary studies reporting on the barriers to or difficulties in end-of-life conversations experienced by terminally ill patients and/or family caregivers were included in this review.
RESULTS: 18 qualitative and two quantitative studies met the inclusion criteria. The experiences of n=205 patients and n=738 family caregivers were analysed qualitatively; n=293 patients and n=236 caregivers were surveyed in the questionnaire studies. Five overarching categories emerged from the extracted data: emotional, cognitive, communicative, relational and external processes can hinder end-of-life communication within the family. The most frequently reported barriers are emotional and cognitive processes such as protective buffering or belief in positive thinking.
CONCLUSIONS: Research on end-of-life communication barriers in the family context is scarce. Further research should enhance the development of appropriate assessment tools and interventions to support families with the challenges experienced regarding end-of-life conversations.
BACKGROUND: Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs.
PURPOSE: To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life.
METHOD: Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted.
RESULTS: In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%).
CONCLUSIONS: Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population.
Background: Advanced heart failure (AHF) carries a morbidity and mortality that are similar or worse than many advanced cancers. Despite this, there are no accepted quality metrics for end-of-life (EOL) care for patients with AHF.
Methods and Results: As a first step toward identifying quality measures, we performed a qualitative study with 23 physicians who care for patients with AHF. Individual, in-depth, semistructured interviews explored physicians' perceptions of characteristics of high-quality EOL care and the barriers encountered. Interviews were analyzed using software-assisted line-by-line coding in order to identify emergent themes. Although some elements and barriers of high-quality EOL care for AHF were similar to those described for other diseases, we identified several unique features. We found a competing desire to avoid overly aggressive care at EOL alongside a need to ensure that life-prolonging interventions were exhausted. We also identified several barriers related to identifying EOL including greater prognostic uncertainty, inadequate recognition of AHF as a terminal disease and dependence of symptom control on disease-modifying therapies.
Conclusions: Our findings support quality metrics that prioritize receipt of goal-concordant care over utilization measures as well as a need for more inclusive payment models that appropriately reflect the dual nature of many AHF therapies.
BACKGROUND: Nurses have a primary role in providing palliative and end-of-life (EOL) care. Their knowledge of EOL care, attitudes toward care of the dying, and palliative care self-efficacy are important in care delivery. Little is known regarding palliative care preparedness among Mongolian nurses. This study examines palliative care knowledge, attitude towards death and dying, and self-efficacy among Mongolian nurses, and examines predictors of self-efficacy.
METHODS: A cross-sectional descriptive study was conducted. Participants were 141 nurses employed at the National Cancer Center in Mongolia. Data was collected using a self-administered questionnaire.
RESULTS: The median score for the knowledge of palliative care was 8.0/20. "Psychosocial and spiritual care" was the lowest score on the palliative care knowledge subscale. The mean score for attitude toward care of the dying was 69.1%, indicating positive attitudes. The mean score for the palliative care self-efficacy was 33.8/48. Nurses reported low self-efficacy toward communicating with dying patients and their families, and managing delirium. Palliative care knowledge and duration of experience as an oncology nurse significantly predicted self-efficacy toward palliative care, accounting for 14.0% of the variance.
CONCLUSIONS: Palliative education for nurses should address the knowledge gaps in EOL care and focus in increasing palliative care self-efficacy. Considering palliative care knowledge and nursing experience as an oncology nurse were significant predictors of self-efficacy toward palliative care, more effort is needed to fill the knowledge gaps in EOL care among nurses, especially for less experienced nurses.