La décision médicale partagée est un processus complexe, notamment concernant l’arrêt des traitements spécifiques en oncologie. D’une part, le patient, plus vulnérable du fait d’une maladie avancée, et ses proches, redoutent cette interruption. D’autre part, l’oncologue dispose de plus en plus de possibilités thérapeutiques grâce aux avancées médicales réalisées ces dernières années. Une étude prospective observationnelle a été menée en oncologie. Elle s’est intéressée aux motifs faisant émerger le questionnement, au degré de concordance entre les différents interlocuteurs (équipe de soins palliatifs, oncologue, patients et proches) et à la décision finalement prise.
CONTEXT: It is especially important that patients are well-informed when making high stakes, preference-sensitive decisions like those on the Physician Orders for Life-Sustaining Treatment (POLST) form. However, there is currently no way to easily evaluate whether patients understand key concepts when making these important decisions.
OBJECTIVES: To develop a POLST knowledge survey.
METHODS: Expert (n = 62) ratings of key POLST facts were used to select items for a POLST Knowledge Survey. The survey was administered to nursing facility residents (n = 97) and surrogate decision-makers (n = 112). A subset (n = 135) were re-administered the survey after a standardized advance care planning discussion to assess responsiveness of the scale to change.
RESULTS: The 19-item survey demonstrated adequate reliability (α = 0.72.). Residents' scores (x = 11.4, standard deviation 3.3) were significantly lower than surrogate scores (x = 14.7, standard deviation 2.5) (p < .001). Scores for both groups increased significantly following administration of a standardized advance care planning discussion (p < .001). Although being a surrogate, age, race, education, cognitive functioning, and health literacy were significantly associated with higher POLST Knowledge Survey scores in univariate analyses, only being a surrogate (p < 0.001) and being white (p = 0.028) remained significantly associated with higher scores in multivariate analyses.
CONCLUSION: The 19-item POLST Knowledge Survey demonstrated adequate reliability and responsiveness to change. Findings suggest the survey could be used to identify knowledge deficits and provide targeted education to ensure adequate understanding of key clinical decisions when completing POLST.
INTRODUCTION: Dying patients with implantable defibrillators (ICD) have a risk of receiving unnecessary shocks before death. The aim of this study was to investigate if deactivation of shock therapy at end-of-life has increased since publication of new guidelines in 2010 on ICD management.
METHOD AND RESULTS: This is a study of two groups of ICD patients who died in hospitals before and after publication of new guidelines. Group 1 consists of 89 patients who died between 2003 and 2010. Group 2 consists of 252 patients, the total number of ICD patients in Sweden who died in hospital during 2014. Data was obtained from the Swedish ICD and Pacemaker Registry, Swedish Tax Agency and patient medical notes. Two-thirds died in wards other than Cardiology. Fifty-four percent in group 1 had a Do-Not-Resuscitate-order (DNR) compared to 73% in group 2. Shock deactivation was present in 52% in group 1 and 67% in group 2. The difference in shock deactivation between group 1 and 2 was only significant (p = 0.014) for DNR-patients treated in Cardiology. A significant difference (p = 0.036) was found in deactivation within group 2 between DNR-patients in Cardiology vs. DNR-patients in Non-Cardiology wards.
CONCLUSION: Two-thirds of ICD patients die in wards other than Cardiology. Since publication of guidelines on ICD management there is a general increase in shock deactivation for DNR-patients, but only significant for patients in Cardiology. This implicate that actions have to be taken for patients treated in Non-Cardiology wards to bridge the gap between guidelines recommendations and clinical practice.
BACKGROUND: In December 2017, Law 219/2017, 'Provisions for informed consent and advance directives', was approved in Italy. The law is the culmination of a year-long process and the subject of heated debate throughout Italian society. Contentious issues (advance directives, the possibility to refuse medical treatment, the withdrawal of medical treatment, nutrition and hydration) are addressed in the law.
MAIN TEXT: What emerges clearly are concepts such as quality of life, autonomy, and the right to accept or refuse any medical treatment - concepts that should be part of an optimal relationship between the patient and healthcare professionals. The law maximizes the value of the patient's time to decide. Every patient is allowed to make choices for the present (consenting to or refusing current treatment) as well as for the future, conceived as a continuation of the present, and to decide what comes next, based on what he/she already knows. The law identifies three distinct but converging paths towards the affirmation of a care relationship based on reciprocal trust and respect: the possibility to consent to or refuse treatment, the shared care planning, and advance directives.
CONCLUSIONS: The fundamental point to emerge from the new Italian law is that consensus is an essential connotation of the treatment relationship. Consensus is not limited to the acceptance/rejection of medical treatment but is ongoing. It is projected into the future through shared care planning and advance directives which act as tools for self-determination and the manifestation of the beliefs and preferences of persons unable to express their will. These principles are in line with the idea of appropriate care as evaluated from two different perspectives, one of scientific adequacy and the other commensurate with the individual's resources, fragility, values, and beliefs. Surely, however, the new law is not the end of the matter on issues such as conscientious objection, which is deeply rooted within the Italian cultural and political debate. In this regard, healthcare institutions and policymakers will be called upon to develop and implement organizational policies aimed at the management of foreseeable conscientious objection in this field.
AIM: "Early" withdrawal of life support therapies (eWLST) within the first 3 calendar days after resuscitation from cardiac arrest (CA) is discouraged. We evaluated a prospective multicenter registry of patients admitted to hospitals after resuscitation from CA to determine predictors of eWLST and estimate its impact on outcomes.
METHODS: CA survivors enrolled from 2012-2017 in the International Cardiac Arrest Registry (INTCAR) were included. We developed a propensity score for eWLST and matched a cohort with similar probabilities of eWLST who received ongoing care. The incidence of good outcome (Cerebral Performance Category of 1 or 2) was measured across deciles of eWLST in the matched cohort.
RESULTS: 2688 patients from 24 hospitals were included. Median ischemic time was 20 (IQR 11, 30) minutes, and 1148 (43%) had an initial shockable rhythm. Withdrawal of life support occurred in 1162 (43%) cases, with 459 (17%) classified as eWLST. Older age, initial non-shockable rhythm, increased ischemic time, shock on admission, out-of-hospital arrest, and admission in the United States were each independently associated with eWLST. All patients with eWLST died, while the matched cohort, good outcome occurred in 21% of patients. 19% of patients within the eWLST group were predicted to have a good outcome, had eWLST not occurred.
CONCLUSIONS: Early withdrawal of life support occurs frequently after cardiac arrest. Although the mortality of patients matched to those with eWLST was high, these data showed excess mortality with eWLST.
BACKGROUND: Evidence regarding the impact of early palliative family conferences (PFCs) and decision to withdraw life-sustaining treatment (DTW) on healthcare costs in an intensive care unit (ICU) setting is inconsistent.
METHODS: We retrospectively analyzed patients who died in an ICU from 2013 to 2016. PFCs held within 7 days after ICU admission and DTWs were verified by reviewing medical records and claims data. Comparisons were first made between patients with and without DTWs, and secondly, between DTW patients with and without PFCs within 7 days. Propensity score matching methods were used to examine the difference in costs between patients with and without DTWs and PFCs within 7 days.
RESULTS: Of the 579 patients included, those with DTWs (n = 73) had a longer ICU stay than those without (n = 506) (12.9 ± 7.1 vs. 8.4 ± 9.6 days, p < 0.001). The DTW patients were more likely to have a "do-not-resuscitate" order (p < 0.001) and PFCs within 7 days (p < 0.001) and had lower healthcare costs (USD 7358 ± 4116 vs. 8669 ± 9,535, p = 0.038). After matching, healthcare cost reduction for patients with DTWs, compared with those without DTWs, was USD 3467 [95% CI, 915-6019] (p < 0.001). Compared with DTW patients without PFCs within 7 days, the costs for DTW patients with PFCs within 7 days further reduced to USD 3042 [95%CI, 1358-4725] (p < 0.001).
CONCLUSIONS: Palliative family conferences held within 7 days after ICU admission with decisions to withdraw life-sustaining treatments significantly lowered healthcare costs.
BACKGROUND: Critically ill patients may die despite invasive intervention. In this study, we examine trends in the application of two such treatments over a decade, namely, endotracheal ventilation and vasopressors and inotropes administration, as well as the impact of these trends on survival durations in patients who die within a month of ICU admission.
METHODS: We considered observational data available from the MIMIC-III open-access ICU database and collected within a study period between year 2002 up to 2011. If a patient had multiple admissions to the ICU during the 30 days before death, only the first stay was analyzed, leading to a final set of 6,436 unique ICU admissions during the study period. We tested two hypotheses: (i) administration of invasive intervention during the ICU stay immediately preceding end-of-life would decrease over the study time period and (ii) time-to-death from ICU admission would also decrease, due to the decrease in invasive intervention administration. To investigate the latter hypothesis, we performed a subgroups analysis by considering patients with lowest and highest severity. To do so, we stratified the patients based on their SAPS I scores, and we considered patients within the first and the third tertiles of the score. We then assessed differences in trends within these groups between years 2002-05 vs. 2008-11.
RESULTS: Comparing the period 2002-2005 vs. 2008-2011, we found a reduction in endotracheal ventilation among patients who died within 30 days of ICU admission (120.8 vs. 68.5 hours for the lowest severity patients, p<0.001; 47.7 vs. 46.0 hours for the highest severity patients, p = 0.004). This is explained in part by an increase in the use of non-invasive ventilation. Comparing the period 2002-2005 vs. 2008-2011, we found a reduction in the use of vasopressors and inotropes among patients with the lowest severity who died within 30 days of ICU admission (41.8 vs. 36.2 hours, p<0.001) but not among those with the highest severity. Despite a reduction in the use of invasive interventions, we did not find a reduction in the time to death between 2002-2005 vs. 2008-2011 (7.8 days vs. 8.2 days for the lowest severity patients, p = 0.32; 2.1 days vs. 2.0 days for the highest severity patients, p = 0.74).
CONCLUSION: We found that the reduction in the use of invasive treatments over time in patients with very poor prognosis did not shorten the time-to-death. These findings may be useful for goals of care discussions.
With the increasing prevalence of the left ventricular assist device (LVAD) in patients with end-stage cardiomyopathies, an increasing number of these patients are dying of noncardiac conditions. It is likely that the palliative care clinician will have an ever-increasing role in managing end of life for patients with LVADs, including discontinuation of LVAD support. There exists a paucity of literature describing strategies for effective delivery of palliative care in patients requesting discontinuation of LVAD therapy. Here, we present a case of a patient with metastatic cancer who requested LVAD discontinuation. Because of practical concerns and patient preference, the patient did not have intravenous (IV) access and medications requiring IV administration could not be used. Therefore, a strategy using intranasal midazolam and sufentanil was applied, the LVAD was deactivated, and the patient died comfortably. This case is, to our knowledge, the first to describe a strategy for delivery of palliative care in patients requesting discontinuation of LVAD support, particularly in the absence of IV access. Such a strategy may be applicable to patients wishing to die at home, and therefore allow greater latitude for patients and clinicians in their approach to the end of life.
OBJECTIVE: This study aims (1) to assess physicians' attitudes toward different palliative end-of-life (EOL) practices in amyotrophic lateral sclerosis (ALS) care, including forgoing artificial nutrition and hydration (FANH), continuous sedation until death (CSD), and withdrawing invasive ventilation (WIV), and toward physician-assisted dying (PAD) including physician-assisted suicide and euthanasia and (2) to explore variables influencing these attitudes.
METHODS: We used two clinical vignettes depicting ALS patients in different stages of their disease progression to assess the influence of suffering (physical/psycho-existential) on attitudes toward WIV and the influence of suffering and prognosis (short-term/long-term) on attitudes toward FANH, CSD, and PAD.
RESULTS: 50 physicians from European ALS centers and neurological departments completed our survey. Short-term prognosis had a positive impact on attitudes toward offering FANH (p = 0.014) and CSD (p = 0.048) as well as on attitudes toward performing CSD (p = 0.036) and euthanasia (p = 0.023). Predominantly psycho-existential suffering was associated with a more favorable attitude toward WIV but influenced attitudes toward performing CSD negatively. Regression analysis showed that religiosity was associated with more reluctant attitudes toward palliative EOL practices and PAD, whereas training in palliative care was associated with more favorable attitudes toward palliative EOL practices only.
CONCLUSION: ALS physicians seem to acknowledge psycho-existential suffering as a highly acceptable motive for WIV but not CSD. Physicians appear to be comfortable with responding to the patient's requests, but more reluctant to assume a proactive role in the decision-making process. Palliative care training may support ALS physicians in these challenging situations.
In the last few years, important changes have occurred in the clinical and epidemiological characteristics of patients that were admitted to cardiac intensive care units (CICU). Care has shifted from acute coronary syndrome patients towards elderly patients, with a high prevalence of non-ischemic cardiovascular diseases and a high burden of non-cardiovascular comorbid conditions: both increase the susceptibility of patients to developing life-threatening critical conditions. These conditions are associated with a significant symptom burden and mortality rate and an increased length of stay. In this context, palliative care programs, including withholding/withdrawing life support treatments or the deactivation of implanted cardiac devices, are frequently needed, according to the specific guidelines of scientific societies. However, the implementation of these recommendations in clinical practice is still inconsistent. In this review, we analyze the reasons for this gap and the main cultural changes that are required to improve the care of patients with advanced illness.
Alors que le rapport d'information du Sénat sur la situation dans les EHPAD lui était remis, Mme Agnès Buzyn, ministre des solidarités et de la santé, disait aux sénateurs : "Le désarroi quotidien du personnel [des EHPAD] est en partie liée au fait que les personnes accueillies meurent en moyenne dans les deux ans. C'est très anxiogène et déprimant. Nous devons former le personnel et organiser la fin de vie en Ehpad." Mais comment ? Ce dossier, réalisé en collaboration avec la SFAP et le CNSPV, revient sur les droits des malades en fin de vie issus des lois du 22 avril 2005 et du 2 février 2016, apporte des données chiffrées et présente l'expérience de l'équipe mobile de soins palliatifs du Val-d'Oise, une EMSP entièrement réservée aux EHPAD.
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Au sommaire de ce dossier : "Représentations des coordinateurs hospitaliers concernant la légitimité des proches à décider d'un don d'organes" - "Le don d'organes : voir au-delà des volontés individuelles ?" - "Limitation et arrêt de thérapeutique (s) active (s) aux urgences" - "Les interruptions médicales de grossesse pour mise en péril grave de la santé de la femme. Analyse de 122 demandes à la clinique Jules-Verne de Nantes de 2005 à 2009 d'un point de vue médical et éthique" - "Face à l'émergence d'une théorie post-humaniste, le rapport au corps et la culture palliative caractérisent-ils l'entrée dans une nouvelle modernité ?" - "Déploiement technologique au XXIe siècle. Enjeux éthiques et implication du soignant et du citoyen".
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Dans le cadre de la fin de vie d'une maladie neurodégénérative, les praticiens n'ont pas engagé leur responsabilité en refusant de mettre en oeuvre une réanimation active, qui aurait été scientifiquement inadaptée. La règle du consentement aux soins ne dérive pas vers un libre choix du traitement (CAA de Lyon, 14 mai 2018, n° 16LY02121).
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Depuis quelques années, la fin de vie est un sujet sociétal sensible et très médiatisé ayant nécessité de réfléchir à un repositionnement des soignants. En 2005, la loi Léonetti et plus récemment la loi Claeys Leonetti en 2016 ont apporté des éléments de réponses concernant l'accompagnement des patients en fin de vie. Face à une situation complexe de soins palliatifs, parfois face aux pressions de la famille, comment peuvent se positionner les différents acteurs de la décision ? Le patient a-t-il exprimé une volonté particulière concernant sa fin de vie sous la forme de directives anticipées ? De quelle manière et comment rédiger des directives anticipées ? Quel est le cadre législatif concernant la limitation ou l'arrêt les soins curatifs ? Quelle est la place du médecin dans cette décision ? Quelle est la place de l'avis de la famille et/ou de la personne de confiance dans la décision concernant l'arrêt ou la limitation des soins curatifs ?
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En application de la jurisprudence, Vincent L., le juge administratif, s'autorise à contrôler directement une décision médicale, alors que le patient est en vie dans un lit d'hôpital. Dans ces conditions, le juge doit manifester une prudence particulière dans la connaissance des faits, et il est difficile d'échapper au recours à l'expertise judiciaire. (Conseil d'État, 13 juillet 2017, no 412267, Référé).
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The possibility to determine death based on cardiocirculatory criteria in controlled cases, namely when there is a request to withhold treatment-or, more frequently, withdraw it-specifically recalls the recent Italian law on advance treatment directives and leaves the following question unanswered: Under what conditions is the patient's request legally and ethically acceptable? We present 3 ethical proportionality criteria for supporting physicians' decision-making facing patients' requests of treatment withdrawal, namely: 1. irreversible pathology with an ominous and worsening prognosis; 2. within an evaluation considering both clinical data and the patient's history; and 3. facing burdens that are no longer bearable. We finally argue that reflection over controlled donor may be a model for giving medicine the chance to responsibly deal with broader end-of-life issues.
In An NHS Trust and others v Y and another, the Supreme Court was asked to address the question of whether a court order must always be obtained before clinically assisted nutrition and hydration (CANH), which is keeping alive a person with a prolonged disorder of consciousness (PDOC). This case note explores the Court's decision to dispense with the need for such a court order and analyses that important change in approach from the perspective of the right to life protected in Article 2 European Convention on Human Rights (ECHR) as well as in the broader context of end of life decision-making.
Over several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. We explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors' decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative "constitutive" model is supported on the basis that medicine, medical law, and medical ethics exemplify the inevitable entanglement of facts and values. The model requires that ethics and law be taught across the medical education curriculum and integrated with the basic and clinical sciences and that they be perceived as an integral component of medical evidence and practice. Law, in particular, would rank as equal in normative authority to the relevant clinical scientific "facts" of the case, with graduating doctors having as strong a basic command of each category as the other. The normalization of legal knowledge as part of the clinician's evidence base to be utilized in practice may provide adequate consolation for clinicians who may initially resent further perceived incursions on their traditional independence and discretion.
Implantable cardioverter-defibrillator aids in the prevention of cardiac arrest by delivering an electrical shock in the presence of life-threatening ventricular arrhythmias. Although implantable cardioverter-defibrillators are essential to sustain life in patients with end-stage heart failure, it is important to consider the option for prompt deactivation of implantable cardioverter-defibrillators to prevent inappropriate electrical shocks at the end of life where death is inevitable. In this systematic review, available literature was reviewed, using six electronic databases, to identify problems that may delay the deactivation of implantable cardioverter-defibrillators and address possible considerations for implantable cardioverter-defibrillator management to improve end-of-life care. Studies reported low occurrence of deactivation discussions, lack of knowledge regarding implantable cardioverter-defibrillator deactivation among most patients, and provider’s perception of being unqualified to initiate discussion and perform deactivation of implantable cardioverter-defibrillator. A need for additional patient and provider education and periodic discussions between patient and provider on implantable cardioverter-defibrillator deactivation should occur, as well as development of protocol or policy to guide care at the end of life.
Newborn infants are among those most severely affected by humanitarian crises. Aid organisations increasingly recognise the necessity to provide for the medical needs of newborns, however, this may generate distinctive ethical questions for those providing humanitarian medical care. Medical ethical approaches to neonatal care familiar in other settings may not be appropriate given the diversity and volatility of humanitarian disasters, and the extreme resource limitations commonly faced by humanitarian aid missions. In this paper, we first systematically review existing guidelines relating to the treatment and resuscitation of newborns in humanitarian crises, finding little substantive ethical guidance for those providing humanitarian healthcare. We next draw on paradigm cases and published literature to identify and describe some of the major ethical questions common to these settings. We divide these questions into quality of life considerations, allocation of limited resources, and conflicting cultural norms and values. We finally suggest some preliminary recommendations to guide ethical decision-making around resuscitation of newborns and withdrawal of treatment in humanitarian settings.