Essai d'une approche comparative entre le droit français et le droit sénégalais. L'une des particularités du 21e siècle durant ces dernières décennies est indéniablement le progrès scientifique qui a réalisé de grandes prouesses dans plusieurs domaines, comme celui de la médecine. La personne humaine est au coeur de ces bouleversements scientifiques et la question de sa vulnérabilité se pose lorsqu'il s'agit plus particulièrement de l'enfant malade.
Au-delà des traitements médicaux, la protection de l'enfant malade implique une prise en compte de la recherche médicale et comporte dès lors des enjeux internationaux qui méritent une étude comparative notamment entre le droit français et le droit sénégalais.
"Papa, Maman, Faustine, ne vous inquiétez pas pour moi, je n'ai pas peur. Prenez soin de vous. Je vous aime." Ces mots sont ceux d'Emilie. Elle les écrit lorsqu'elle apprend qu'après deux années de combat contre le cancer, plus aucun traitement ne peut prolonger sa vie. A travers ces quelques mots, elle donne une leçon de vie à sa famille et à ses proches : elle fait le choix d'être heureuse pendant le peu de temps qui lui reste à vivre.
Elle souhaite partager son enjouement, son courage et sa force avec ceux qui l'ont toujours aimée et soutenue. Jusqu'où ira-t-elle dans le combat qu'elle mène contre la maladie ? Comment vivra-t-elle ses derniers instants ? Ses proches réussiront-ils à accepter la situation et à surmonter cette douloureuse épreuve ?
Cadavre : corps mort, tout être vivant est destiné à le devenir. Est-ce pour autant la fin de la vie ? Non, si c'était le cas nous ne laisserions pas une chose inerte après notre passage sur Terre. Cette chose incapable de s'exprimer a pourtant tant à raconter : un deuil, un héritage, un souvenir oublié, un revenant, une valeur chiffrable... En voici treize de leurs histoires, à ces cadavres si bavards !
Doctors, nurses, and family caregivers worldwide are facing tough decisions concerning the supply and administration of medications to manage symptoms when patients are dying from covid-19 or other conditions in the community or care homes. Proposed changes in practice aimed at ensuring adequate end-of-life symptom control need careful consideration alongside appropriate training and support.
Updated UK advice, including NICE rapid guidance on managing covid-19 symptoms in the community, reiterates the importance of prescribing medications in advance of need for pain, nausea and vomiting, agitation, and respiratory secretions. These drugs may be administered if needed by visiting doctors or nurses, as is already well established in some countries. However, this practice is being overhauled radically in response to the pandemic.
Anticipatory grief is a concept commonly used by researchers and clinicians when talking about the experience before the death of a loved one. This article offers a critical perspective on the disciplinary, theoretical and philosophical foundations of three distinct and frequently used conceptualisations of anticipatory grief: Lindemann's, Rando's and one derived from sociology. Lindemann's perspective conceived anticipatory grief as an inevitable component of the grieving experience in the situation of impending death. Rando's perspective views anticipatory grief as a multidimensional that facilitates post-mortem mourning. The third perspective, offered by sociologists, defines anticipatory grief as an experience highly influenced by the social context of the individual. This review explains how these different perspectives influence research and concludes with a reflection for potential future research.
L'auteure, psychologue hospitalière, donne des conseils pour permettre à chacun de trouver sa place d'aidant auprès d'un malade. De l'entrée en soins palliatifs à la phase terminale, elle répond à l'ensemble des problématiques émotionnelles et relationnelles et propose des outils de dialogue pour faire le lien avec les professionnels de santé.
François Lambert, proche de Vincent Lambert, propose son témoignage sur l'euthanasie, le suicide assisté et la fin de vie. Devenu avocat, l'auteur dévoile les coulisses de la lutte entre les membres de sa famille.
Ce livre constitue une enquête sur l'affaire Vincent Lambert, homme en état végétatif autour duquel sa famille se déchire à coups de procédure judiciaire. En révélant les dimensions politique et romanesque de ce drame familial, elle pose également les questions éthiques de la fin de vie, de l'euthanasie et du suicide assisté.
Le dossier contient les articles suivants : documentation, diffusion et recherche : des objectifs pour la revue ; les documentalistes comme partenaire dans la prise en charge des patients en fin de vie ; documentation et soins palliatifs : état des lieux de l’existant ; le thésaurus, un vocabulaire contrôlé pour parler le même langage ;
la recherche documentaire en soins palliatifs ; les médias sociaux : le monde est au bout de nos doigts ; la littérature scientifique française en soins palliatifs : cartographie bibliographique ; Palli@Doc : un point d’entrée unique à l’information en soins palliatifs ; la littérature de jeunesse au service de l’enfant hospitalisé ; se documenter, une ressource essentielle de praticien réflexif ; l’implication des documentalistes dans la recherche documentaire en soins palliatifs.
Pilou, un petit oiseau, vit une vie heureuse dans la ferme, entre ses parents et surtout Paulette, la star de la basse-cour ! Mais voilà, un jour, Paulette tombe malade et c'est toutes les petites habitudes du quotidien qui sont modifiées. C'est que la maladie de Paulette est "trop forte", le docteur ne peut plus la guérir. Face au chagrin de ses proches, Pilou se pose des questions sur la maladie et la mort. Heureusement, toute la basse-cour est là pour accompagner ses derniers jours. Le médecin aide Paulette à mourir sans souffrance grâce à une piqûre. C'est un premier deuil pour Pilou, qui apprendra alors à se souvenir des bons moments pour emporter avec lui "la bonne humeur de Paulette".
Pilou, un petit oiseau, vit une vie heureuse dans la ferme, entre ses parents et surtout Lisette, la star de la basse-cour ! Mais voilà, un jour, Lisette tombe malade et c'est toutes les petites habitudes du quotidien qui sont modifiées. C'est que la maladie de Lisette est "trop forte", le docteur ne peut plus la guérir. Face au chagrin de ses proches, Pilou se pose des questions sur la maladie et la mort. Heureusement, le médecin aide Lisette à ne pas souffrir et toute la basse-cour est là pour accompagner ses derniers jours. C'est un premier deuil pour Pilou, qui apprendra alors à se souvenir des bons moments pour emporter avec lui "la bonne humeur de Lisette".
EXECUTIVE SUMMARY: Usage of hospice services for patients facing life-limiting illness has steadily increased. In these services, hospitals discharge patients to various hospice settings, including the inpatient model, where a patient may remain in the discharging hospital to receive hospice services. In this discharge practice, the patient is considered a hospital survivor and subsequent hospice death. The purpose of the study was to determine if the decline of in-hospital mortality for six common high-volume admission diagnoses could be attributed in part to an increase in discharges to a hospice setting for end-of-life care. In this retrospective study using the National Inpatient Sample database from 2007 to 2011, we identified patients = 18 years for six acute and chronic diagnoses: heart failure, chronic obstructive pulmonary disease, acute myocardial infarction, acute myocardial infarction with cardiogenic shock, septic shock, and lung neoplasm (cancer). We categorized patients according to their hospital discharge disposition as hospice or in-hospital mortality. A total of 10,458,728 patients met our criteria, of which 2.72% were discharged to hospice and 6.38% died. Compared to patients who died in the hospital, hospice patients were older, had a shorter length of stay, and experienced more comorbidities. Hospice use was more common in Medicare patients, in nonteaching hospitals, and in the South. White individuals were more likely to be discharged to hospice compared to nonwhites. Among the six selected diagnoses over the 5-year period, hospice use rose as observed mortality decreased. Our findings suggest that variability among hospitals in hospice use will affect benchmarked hospital mortality comparisons and could inappropriately reward or penalize hospitals in their public reporting.
BACKGROUND: Little is known about the characteristics of patients needing palliative care consultation in the ED. This study aimed to investigate the impacts of initiating screening in acute critically ill patients needing palliative care on mortality, healthcare resources, and end-of-life care (EOL) in the intensive care unit in ED (EICU).
METHODS: We conducted an analysis study in Taipei Veterans General Hospital. From February 1 to July 31, 2018, acute critically ill patients in EICU were recruited. The primary outcomes were inhospital mortality and EOL care. The secondary outcomes included clinical characteristics and healthcare utilization.
RESULTS: A total of 796 patients were screened, with 396 eligible and 400 non-eligible patients needing palliative care consultations. The mean age was 74.8 ± 17.1 years, and 62.6% of the patients were male. According to logistic regression analysis, clinical predictors, including age (adjusted odds ratio [AOR], 1.028; 95% confidence interval [CI], 1.015-1.042), respiratory distress and/or respiratory failure (AOR, 2.670; 95% CI, 1.829-3.897), the Acute Physiology and Chronic Health Evaluation II score (AOR, 1.036; 95% CI, 1.009-1.064), Charlson Comorbidity Index score (AOR, 1.212; 95% CI, 1.125-1.306), and Glasgow Coma Scale (AOR, 0.843; 95% CI, 0.802-0.885), were statistically more significant in eligible patients than in non-eligible patients. The inhospital mortality rate was significantly higher in eligible patients than that in non-eligible patients (40.7% vs. 11.5%, p < 0.01). Eligible patients have a higher ratio in both vasopressor and narcotic use and withdrawal of endotracheal tube than non-eligible patients (p < 0.05).
CONCLUSION: Our study results demonstrated that initiating palliative consultation for acute critically ill patients in ED had an impact on the utilization of healthcare resources and quality of EOL care. Further assessments of the viewpoints of ED patients and their family regarding palliative care consultations and hospice care are required.
Caring for patients who are dying is both a challenging and demanding role. This is further intensified by the expectation that in addition to attending to physical issues, nurses are expected to manage the emotional and psychological aspects of the situation. The inconsistent nature of the care pathways between differing specialist services can often mean that open access to specialist services is not possible. As such, staff may find themselves inadvertently supplementing and often reinforcing interventions offered by specialist (psychological) services with little consideration given to capacity, experience and resources. As the most 'consistently present' professionals in such settings, it is important for nursing colleagues to be aware of the emotional and psychological themes common to patients who are dying. Thus, allowing patients access to supportive conversation with professionals as and when required, ameliorating unnecessary distress.
Palliative care (PC) that has evolved from a focus on end of life care to an expanded form of holistic care at an early stage for patients with serious illnesses and their families is commonly referred to as nonhospice PC (or early PC). Patients with end stage liver disease (ESLD) suffer from a high symptom burden, deteriorated quality of life with uncertain prognosis and limited treatment options. Caregivers of these patients also bear the emotional and physical burden similar to cancer caregivers. Despite proven benefits of nonhospice PC in other serious illnesses and cancer, there are no evidence-based structures and processes to support its integration within the routine care of ESLD patients and their caregivers. In this article, we review the current state of PC within ESLD, and propose key structures and processes to integrate nonhospice PC within routine hepatology practice. Results found that PC is highly underutilized within ESLD care, and limited prospective studies are available to demonstrate methods to integrate PC within routine hepatology practices. Hepatology providers reported lack of training to deliver PC along with no clear prognostic criteria on when to initiate PC. A well informed model with key structures and processes for nonhospice PC integration would allow hepatology providers to improve clinical outcomes, ESLD patients' quality of life, as well as reduce healthcare costs. Educating the hepatology providers about PC principles and developing clear prognostic criteria for when and how to integrate PC based on individual patient needs are the initial steps to inform the integration. The fields of nonhospice PC and hepatology have ample opportunities to partner clinically and academically.
OBJECTIVES: Approximately 70% of Americans would prefer to die at home and avoid hospitalization or intensive care during the terminal phase of illness. Given the wish to die at home, it should follow the majority of Americans achieves their wish. However, recent data indicate ~60% of people dies away from home or hospice care. This article sets out to understand what makes it so difficult to attain what we aspire for in death and provide a starting point for change.
METHOD: The authors reviewed and analysed literature on elements which drive patients to continue treatment even though prospects are grim.
RESULTS: Six elements which combine into a system driving non-peaceful death were identified (western culture, healthcare system, pharmaceutical industry, professionals, family and loves ones, patients themselves) and complemented with three additional factors entrenched in us as humans which make the system particularly difficult to overcome ((rational) decision making, option framing, inability to change).
CONCLUSION: Dying in peace is easier said than done because the cards are stacked against us and we seem to remain unaware of the breadth and depth at which continuing treatment is ingrained in our system.
BACKGROUND: Ethnicity may be associated with important aspects of end-of-life care, such as what treatments are received, access to palliative care and where people die. However, most studies have focused on end-of-life care of white, Hispanic and black patients. We sought to compare end-of-life care delivered to people of Chinese and South Asian ethnicity with that delivered to others from the general population, in Ontario, Canada.
METHODS: In this population-based cohort study, we included all people who died in Ontario, Canada, between Apr. 1, 2004, and Mar. 31, 2015. People were identified as having Chinese or South Asian ethnicity on the basis of a validated surname algorithm. We used modified Poisson regression analyses to assess location of death and care received in the last 6 months of life.
RESULTS: We analyzed 967 339 decedents, including 18 959 (2.0%) of Chinese and 11 406 (1.2%) of South Asian ethnicity. Chinese (13.6%) and South Asian (18.5%) decedents were more likely than decedents from the general population (10.1%) to die in the intensive care unit (ICU). The adjusted relative risk of dying in intensive care was 1.21 (95% confidence interval [CI] 1.15 to 1.27) for Chinese and 1.25 (95% CI 1.20 to 1.30) for South Asian decedents. In their last 6 months of life, decedents of Chinese and South Asian ethnicity experienced significantly more ICU admission, hospital admission, mechanical ventilation, dialysis, percutaneous feeding tube placement, tracheostomy and cardiopulmonary resuscitation than the general population.
INTERPRETATION: Decedents of Chinese and South Asian ethnicity in Ontario were more likely than decedents from the general population to receive aggressive care and to die in an ICU. These findings may be due to communication difficulties between patients and clinicians, differences in preferences about end-of-life care or differences in access to palliative care services.
Background: Multiple chronic conditions (MCCs) are associated with increased intensity of end-of-life (EOL) care, but their effect is not well explored in patients with cancer.
Objective: we examined EOL health care intensity and advance care planning (ACP) documentation to better understand the association between MCCs and these outcomes.
Design: Retrospective cohort study.
Setting/Subjects: Patients aged 18+ years at UW Medicine who died during 2010-2017 with poor prognosis cancer, with or without chronic liver disease, chronic pulmonary disease, coronary artery disease, dementia, diabetes with end-stage organ damage, end-stage renal disease, heart failure, or peripheral vascular disease.
Measurements: ACP documentation 30+ days before death, in-hospital death, and inpatient or intensive care unit (ICU) admission in the last 30 days. We performed logistic regression for outcomes.
Results: Of 15,092 patients with cancer, 10,596 (70%) had 1+ MCCs (range 1-8). Patients with cancer and heart failure had highest odds of hospitalization (odds ratio [OR] 1.67, 95% confidence interval [CI] 1.46-1.91), ICU admission (OR 2.06, 95% CI 1.76-2.41), or in-hospital death (OR 1.62, 95% CI 1.43-1.84) versus patients with cancer and other conditions. Patients with ACP 30+ days before death had lower odds of in-hospital death (OR 0.65, 95% CI 0.60-0.71), hospitalization (OR 0.67, 95% CI 0.61-0.74), or ICU admission (OR 0.71, 95% CI 0.64-0.80).
Conclusions: Patients with ACP 30+ days before death had lower odds of high-intensity EOL care. Further research needs to explore how to best use ACP to ensure patients receive care aligned with patient and family goals for care.