Introduction : La médecine palliative est un "prendre soin" qui assure une optimisation de la qualité de vie des patients atteints d’une maladie incurable, non exclusivement lors de la phase terminale de leur maladie. L’objectif de recherche est de recueillir et d’analyser le regard sur les soins palliatifs de patients consultant chez le médecin généraliste. L’hypothèse de travail est que les soins palliatifs sont encore, a priori, trop souvent associés à la prise en charge de patients mourants, et leur utilité, à un stade précoce de la maladie en termes de soulagement des symptômes, semble méconnue.
Méthode : Éude qualitative par des entretiens semi-dirigés auprès de patients consultant chez leur médecin généraliste.
Résultats : Un total de 11 entretiens ont été menés. L’analyse thématique retrouvait 5 thèmes : la médecine palliative vue comme les soins palliatifs terminaux ; les soins palliatifs vus, comme un réel accompagnement ; l’évocation des soins palliatifs avait projeté les patients sur leurs propres peurs ; le regard des patients sur la démarche palliative, après les avoir informés ; et l’euthanasie.
Discussion : La médecine palliative est réduite aux soins palliatifs terminaux chez les patients, ce qui les a projetés vers leur propre mort. Nous savons qu’une appréhension des soins et des a priori négatifs ne permettent pas la meilleure alliance thérapeutique. Cette méconnaissance de la médecine palliative a été confronté à une connaissance de l’euthanasie, qui je le rappelle est interdite en France. Cependant, après informations ; les patients ont bien montré au cours de l’entretien leur intérêt pour une démarche palliative précoce dans le cadre d’une maladie incurable.
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.
Objectif : Montrer que les unités de soins palliatifs (USP) s’intègrent dans une prise en charge globale du patient en proposant l’accès à de nombreuses techniques non médicamenteuses.
Introduction : Les USP sont des structures spécialisées en soins palliatifs, destinées aux patients les plus complexes. Ces unités proposent l’intervention d’équipes pluridisciplinaires afin de prendre en charge de façon globale le patient. À cette fin, nous pouvons penser que les USP proposent l’accès à des techniques non médicamenteuses. À ce jour, il n’existe pas d’état des lieux de ces pratiques. Le but de notre étude est de faire un état des lieux des pratiques non médicamenteuses dans les USP en France en 2019.
Matériel et méthodes : Nous avons réalisé une analyse descriptive, non exhaustive, proposée à l’ensemble des USP de France. Nous avons analysé le nombre de techniques non médicamenteuses proposées par chaque USP, en fonction du personnel réalisant le soin (intervention d’un personnel extérieur ou membre de l’équipe soignante médicale ou paramédicale).
Résultats : La totalité des 57 USP répondantes propose l’accès à au-moins une technique non médicamenteuse. En moyenne, 8,58 techniques non médicamenteuses sont proposées par USP. Certaines techniques non médicamenteuses sont pratiquées majoritairement par des intervenants extérieurs à l’USP, d’autres techniques par le personnel médical ou paramédical de l’USP, ou sont réalisées de façon mixte.
Discussion : Toutes les USP répondantes proposent l’accès à au-moins une technique non médicamenteuse, de façon multidisciplinaire. La prise en charge des patients est globale car elle prend en compte les symptômes physiques, psychologiques, sociaux et spirituels.
Introduction : En France, un quart des décès ont lieu en EHPAD (établissements d’hébergement pour personnes âgées dépendantes), soit environ 150 000 décès par an (DRESS 2018). Un total de 60 % de résidents nécessitent des soins palliatifs dans ces structures or il existe actuellement un réel déficit de leur accompagnement. Un total de 24 % d’entre eux se trouveraient encore dans un réel inconfort lors de leur dernière semaine de vie (rapport Sicard 2012).
Objectif : Cette étude visait à explorer le ressenti des équipes soignantes concernant la prise en charge de la douleur des patients en soins palliatifs vivant en EHPAD en vue d’améliorer celle-ci.
Matériel et méthode : Il s’agissait d’une étude qualitative par entretiens individuels semi- directifs, recueillant l’opinion de six médecins et neuf infirmiers travaillant dans sept EHPAD.
Résultats : Les soignants se sentaient généralement en difficulté lors de la prise en charge de la douleur des résidents en fin de vie. Ils attribuaient le plus souvent ces difficultés à un manque de formation en douleur et en soins palliatifs et à un manque de moyens humains : absence d’infirmièr(e) sur place la nuit, accès difficile aux médecins traitants, faibles effectifs de soignants. Dans ce contexte, leurs ressentis étaient très variés avec une large palette émotionnelle de sentiments rapportés : d’une forte implication émotionnelle ou grande empathie, parfois sources de souffrance éthique ; à une réelle distanciation qui semblait plus protectrice.
Conclusion : Les principales pistes d’amélioration de la prise en charge de la douleur des patients en fin de vie en EHPAD identifiées par les soignants dans cette étude étaient le développement des formations et l’augmentation des moyens humains.
Hinduism is one of the five major world religions with >1 billion followers worldwide and encompasses a diversity of belief systems. As of 2010, an estimated 1.8 million Hindus lived in the United States, and this number is expected to increase to 4.8 million by 2050, making the United States home to the largest Hindu population outside of South Asia. As this population continues to grow, it will become increasingly important that clinicians of all disciplines develop a basic understanding of their beliefs and practices to address their palliative care needs. This article highlights 10 considerations for Hindu patients and their families relevant to inpatient care, symptom management, and advance care planning.
Background: The major growth of mobile technologies in the recent years has led to the development of medical-monitoring applications, particularly on smartphones.
Aim: The aim of this study was to review the use of m-health in the monitoring of patients with chronic pathologies in order to consider what could be adapted for palliative care patients at home.
Design: A systematic review of the English and French literature was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria.
Date Sources: The review screened the following databases: PUBMED, SCOPUS, COCHRANE, SCIENCE DIRECT, SUDOC, and EM-Premium, screening studies published between 2008 and 2018. The selection of articles was done by the main investigator. All studies concerning the use of m-Health apps for patients with chronic diseases were included.
Results: From the 337 selected publications, 8 systematic reviews and 14 original studies were included. The main uses of m-Health apps were biological and clinical monitoring (particularly concerning the symptoms) in 75% of the applications, disease self-management in 64% of the applications, and therapeutic patient education in 50% of the applications, with remote monitoring.
Conclusions: The development of an m-Health application could become a complementary monitoring tool during palliative care. However, it seems important to question the impact of technique in the professional–patient relationship and avoid the pitfalls of standardizing palliative care and reducing the patient to a “sick” health technician. A future step would then be to define which health-care professional would be in charge of this “m-monitoring.”
Palliative care helps improve the quality of life of individuals facing life-limiting illness throughout the course of their disease. In Canada, delivery and access to palliative care has been fraught with challenges including differential availability of services based on geography, funding, language, and socioeconomic status. Many groups, including the World Health Organization, have advocated for a public health approach to palliative care as an antidote to fragmented service delivery. Multiple scholars, academics, and public health advocates have suggested that a public health approach to palliative care can help with issues of access, equity, and cost. Through the lens of Kingdon’s Multiple Streams Framework, this commentary will explore potential reasons why a public health approach to palliative care has not been adopted in the Canadian context and why this is an opportune time to consider this policy innovation. The Compassionate Communities concept is discussed as a potential solution to a public health approach to palliative care delivery.
Background: The opioid epidemic has spurred investigations for nonopioid options, yet limited research persists on medical marijuana's (MMJ) efficacy in managing cancer-related symptoms.
Objective: We sought to characterize MMJ's role on symptomatic relief and opioid consumption in the oncologic population.
Design: Retrospective chart review of MMJ-certified oncology patients was performed. Divided patients into MMJ use [MMJ(+)] versus no use [MMJ(-)], and Edmonton Symptom Assessment System (ESAS)-reported pain cohorts: “mild-moderate” versus “severe.”
Measurements: Medical records were reviewed for ESAS, to measure physical and emotional symptoms, and opiate consumption, converted into morphine milligram equivalents (MME). Minimal clinically important differences were determined. Wilcoxon signed-rank tests determined statistical significance between MMJ-certification and most recent palliative care visit.
Results: Identified 232 patients [95/232 MMJ(-); 137/232 MMJ(+)]. Pain, physical and total ESAS significantly improved for total MMJ(-) and MMJ(+); however, only MMJ(+) significantly improved emotional ESAS. MMJ(-) opioid consumption increased by 23% (97.5–120 mg/day MME, p = 0.004), while it remained constant (45–45 mg/day MME, p = 0.522) in MMJ(+). Physical and total ESAS improved in mild-moderate-MMJ(-) and MMJ(+). Pain and emotional symptoms worsened in MMJ(-); while MMJ(+)'s pain remained unchanged and emotional symptoms improved. MMJ(-) opioid consumption increased by 29% (90–126 mg/day MME, p = 0.012); while MMJ(+)'s decreased by 33% (45–30 mg/day MME, p = 0.935). Pain, physical, emotional, and total ESAS scores improved in severe-MMJ(-) and MMJ(+); opioid consumption reduced by 22% in MMJ(-) (135–106 mg/day MME, p = 0.124) and 33% in MMJ(+) (90–60 mg/day MME, p = 0.421).
Conclusions: MMJ(+) improved oncology patients' ESAS scores despite opioid dose reductions and should be considered a viable adjuvant therapy for palliative management.
Background: Early referral of cancer patients for palliative care significantly improves the quality of life. It is not clear which patients can benefit from an early referral, and when the referral should occur. A Delphi Panel study proposed 11 major criteria for an outpatient palliative care referral.
Objective: To operationalize major Delphi criteria in a cohort of lung cancer patients, using a prospective approach, by linking health administrative data.
Design: Population-based observational cohort study.
Setting/Subjects: The study population comprised 38,851 cases of lung cancer in the Ontario Cancer Registry, diagnosed from January 1, 2012, to December 31, 2016.
Measurements: We operationalized 6 of the 11 major criteria (4 diagnosis or prognosis based and 2 symptom based). Patients were considered eligible (index event) for palliative care if they qualified for any criterion. Among eligible patients, we identified those who received palliative care.
Results: Twenty-eight thousand one hundred sixty-four patients were eligible for palliative care by qualifying for either the diagnosis- or prognosis-based criteria (n = 21,036, 76.5%), or for symptom-based criteria (n = 7128, 23.5%). A total of 23,199 (82.4%) patients received palliative care. The median time from palliative care eligibility to the receipt of first palliative care or death or maximum study follow-up was 56 days (range = 17–348).
Conclusions: We operationalized six major criteria that identified the majority of lung cancer patients who were eligible for palliative care. Most eligible patients received the palliative care before death. Future research is warranted to test these criteria in other cancer populations.
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.
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.
Cet ouvrage est à destination des étudiants qui passeront l'ECN de 2021 à 2023. il reprend le programme de l'UE 5 ainsi que les items concernés de des UE 3, 4, 9 et 10 avec, pour chaque thème, les notions importantes, des conseils, des références bibliographiques et les pièges à éviter.
Background: New Orleans, Louisiana served as a central location for a surge of novel coronavirus cases during the months of March 2020 to May 2020. To provide guidance to palliative care teams naive to the palliative care demand associated with a surge of coronavirus cases, we document our protocol to best optimize palliative care resources. This report aims to present this information and reflect upon what was most beneficial/least beneficial to serve as a roadmap for palliative teams facing this pandemic.
Objective: To pilot a team-based structured protocol to categorize severity of COVID-19 intensive care unit (ICU) admissions and subsequently collaborate with the palliative interdisciplinary team to assess physical, spiritual, and psychosocial needs.
Design: New ICU consults were categorized into color-coded clinical severity "pots" during daily ICU interdisciplinary rounds. Clinical decision making and communication with patient/next of kin were based on "pot" classification.
Settings/Subjects: Palliative medicine consults were placed on all COVID-19 positive patients admitted to the ICU between March 29, 2020, and May 1, 2020.
Measurements: A retrospective chart review was performed to analyze the effect of palliative care consultation on completion of goals-of-care conversations and the life-sustaining treatment (LST) document, an advance directive form specific to the Veterans Affairs hospital system between March 29, 2020 and May 1, 2020.
Results: Of the palliative consults evaluated by a palliative provider, 74% resulted in completion of a LST document, 58% resulted in video contact with family members, and 100% incorporated a goals-of-care discussion.
Conclusions: We found that standardizing palliative care consultation on all COVID-19 positive ICU admissions subjectively alleviated the burden on ICU providers and staff in the midst of a crisis, resulted in increased documentation of patient goals-of-care preferences/LSTs, facilitated clinical updates to family members, and better distributed clinical burden among palliative team members.
Palliative care has potential to improve quality of life and goal-concordant care for patients with adult congenital heart disease (ACHD). However, it is rarely employed prior to critical illness because the best methods for implementation are not well-defined. We qualitatively evaluated ACHD patients' understanding of and opinions regarding palliative care and advance care planning (ACP) to better define the needs of this population. We conducted a thematic analysis of 25 semi-structured interviews with patients with ACHD in which we assessed participants' perspectives on the need for, and barriers and facilitators to, the use of palliative care and ACP. In a group of participants with ACHD (mean age 38, 48% male) classified as simple (24%), moderate (32%), or complex (44%), we identified 4 major themes: 1) using knowledge to combat future uncertainties; 2) unfamiliarity with and limited exposure to palliative care and ACP; 3) facilitators and barriers to engaging in palliative care and ACP; and 4) importance of timing and presentation of ACP discussions. In conclusion, participants expressed a desire for knowledge about ACHD progression and treatment. They supported routine incorporation of palliative care and ACP and identified related facilitators and barriers to doing so. Importantly, timing and format of these discussions must be individualized using shared decision-making between clinicians, patients, and their families.
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.
Objectives: The choice of drug treatment in advanced soft tissue sarcoma (STS) continues to be a challenge regarding efficacy, quality of life (QoL) and toxicity. Unlike other cancer types, where integrating patient-reported outcomes (PRO) has proven to be beneficial for QoL, there is no such evidence in patients with STS as of now. The YonLife trial aimed to explore the effect of a tailored multistep intervention on QoL, symptoms and survival in patients with advanced STS undergoing treatment with trabectedin as well as identifying predictors of QoL.
Design: YonLife is a cluster-randomised, open-label, proof-of-concept study. The intervention incorporates electronic PRO assessment, a case vignette and expert-consented treatment recommendations.
Participants: Six hospitals were randomised to the control arm (CA) or interventional arm (IA). Seventy-nine patients were included of whom 40 were analysed as per-protocol analysis set.
Primary and secondary outcome measures: The primary end point was the change of Functional Assessment for Cancer Therapy (FACT-G) total score after 9 weeks. Secondary outcomes included QoL (FACT-G subscales), anorexia and cachexia (Functional Assessment of Anorexia/Cachexia Therapy (FAACT)), symptoms (MD Anderson Symptom Inventory (MDASI)), anxiety and depression (HADS), pain intensity and interference (Brief Pain Inventory (BPI)) and survival assessment.
Results: After 9 weeks of treatment, QoL declined less in the IA ( FACT-G total score: -2.4, 95% CI: -9.2 to 4.5) as compared with CA ( FACT-G total score: -3.9; 95% CI:-11.3 to 3.5; p=0.765). In almost all FACT-G subscales, average declines were lower in IA, but without reaching statistical significance. Smaller adverse trends between arms were observed for MDASI, FAACT, HADS and BPI scales. These trends failed to reach statistical significance. Overall mean survival was longer in IA (648 days) than in CA (389 days, p=0.110). QoL was predicted by symptom severity, symptom interference, depression and anxiety.
Conclusion: Our data suggest a potentially favourable effect of an electronic patient-reported outcomes based intervention on QoL that needs to be reappraised in confirmatory studies.
BACKGROUND: The coronavirus disease 2019 pandemic has led to escalating infection rates and associated deaths worldwide. Amid this public health emergency, the urgent need for palliative care integration throughout critical care settings has never been more crucial.
OBJECTIVE: To promote palliative care engagement in critical care; share palliative care resources to support critical care nurses in alleviating suffering during the coronavirus disease 2019 pandemic; and make recommendations to strengthen nursing capacity to deliver high-quality, person-centered critical care. Methods Palliative and critical care literature and practice guidelines were reviewed, synthesized, and translated into recommendations for critical care nursing practice.
RESULTS: Nurses are ideally positioned to drive full integration of palliative care into the critical care delivery for all patients, including those with coronavirus disease 2019, given their relationship-based approach to care, as well as their leadership and advocacy roles. Recommendations include the promotion of healthy work environments and prioritizing nurse self-care in alignment with critical care nursing standards.
CONCLUSIONS: Nurses should focus on a strategic integration of palliative care, critical care, and ethically based care during times of normalcy and of crisis. Primary palliative care should be provided for each patient and family, and specialist services sought, as appropriate. Nurse educators are encouraged to use these recommendations and resources in their curricula and training. Palliative care is critical care. Critical care nurses are the frontline responders capable of translating this holistic, person-centered approach into pragmatic services and relationships throughout the critical care continuum.
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.
BACKGROUND: At the end of patients' lives, physicians sometimes provide medication with the explicit intention to hasten death. Physicians' assessment of such acts varies. We studied which characteristics are associated with physicians' classification of these acts.
METHODS: This study concerns a secondary analysis of a nationwide study on the practice of medical decision-making at the end of life. In 2015, attending physicians of a sample of deceased people (n=9,351) received a questionnaire about end-of-life care and decision-making. The response rate was 78%. We studied 851 cases in which physicians reported that the patient had died as a result of medication they had provided with the explicit intention to hasten death. Chi-square tests and logistic regression analyses were performed.
RESULTS: If medication had been provided with the explicit intention to hasten death at the explicit request of the patient, physicians considered "euthanasia", "assisted suicide" or "ending of life" the most appropriate term for their course of action in 82% of all cases, while 17% of physicians chose the term "palliative or terminal sedation". Physicians' classification of their act as "euthanasia", "assisted suicide" or "ending of life" was less likely when patients had a short (1-7 days) or very short (max. 24 hours) life expectancy. Furthermore, such classification was less likely when their act had involved the use of other medication than muscle relaxants. The limited number of cases in which patients had been provided with medication without an explicit patient request were never classified as "euthanasia", "assisted suicide" or "ending of life".
CONCLUSIONS: Physicians rarely classify the provision of medication with the explicit intention of hastening death as "euthanasia", "assisted suicide" or "ending of life" when patients are in the dying phase and when they provide other medication than muscle relaxants. In these cases, acts are mostly classified as "palliative or terminal sedation". This suggests that the legal distinction between euthanasia and palliative care may not always be clear in clinical practice.
Theories of good death focused on acceptance, control, and meaning-making inform adult palliative care in high-resource settings. As children's palliative and hospice care (CPHC) develops in resource-limited settings, critical conceptualisations of a good death for children across these diverse settings are unknown. Assessed against high-resource setting tenets of good death from carer perspectives, results suggest: carer agency is limited; advanced discussion of death does not occur; distress results from multiple burdens; basic survival is prioritised; physical pain is not an emphasised experience; and carers publicly accept death quickly while private grief continues. Hegemonic conceptions of 'good death' for children do not occur in contexts where agency is constrained and discussing death is taboo, limiting open discussion, acceptance, and control of dying experiences. Alternate forms of discourse and good death could still occur. Critical, grounded conceptualisations of good death in individual resource-limited settings should occur in advance of CPHC development to effectively relieve expansive suffering in these contexts.