Purpose: Little is known on the incidence of discomfort during the end-of-life of intensive care unit (ICU) patients and the impact of sedation on such discomfort. The aim of this study was to assess the incidence of discomfort events according to levels of sedation.
Methods: Post-hoc analysis of an observational prospective multicenter study comparing immediate extubation vs. terminal weaning for end-of-life in ICU patients. Discomforts including gasps, significant bronchial obstruction or high behavioural pain scale score, were prospectively assessed by nurses from mechanical ventilation withdrawal until death. Level of sedation was assessed using the Richmond Agitation–Sedation Scale (RASS) and deep sedation was considered for a RASS - 5. Psychological disorders in family members were assessed up until 12 months after the death.
Results: Among the 450 patients included in the original study, 226 (50%) experienced discomfort after mechanical ventilation withdrawal. Patients with discomfort received lower doses of midazolam and equivalent morphine, and were less likely to have deep sedation than patients without discomfort (59% vs. 79%, p < 0.001). After multivariate logistic regression, extubation (as compared terminal weaning) was the only factor associated with discomfort, whereas deep sedation and administration of vasoactive drugs were two factors independently associated with no discomfort. Long-term evaluation of psychological disorders in family members of dead patients did not differ between those with discomfort and the others.
Conclusion: Discomfort was frequent during end-of-life of ICU patients and was mainly associated with extubation and less profound sedation.
Introduction : Depuis la loi de 2016, des travaux ont porté sur la sédation dont la création de l’outil SEDAPALL. L’objectif de l’étude était de réaliser un état des lieux des pratiques sédatives en unités de soins palliatifs (USP). Une réflexion sur SEDAPALL comme une aide dans la pratique quotidienne a été proposée.
Matériel/Méthode : Il s’agissait d’une étude rétrospective, multicentrique. Était inclus tout patient ayant reçu une sédation à visée palliative en fin de vie entre le 1er mars et le 31 mai 2018 dans les USP de Rouen, Caen et Le Havre. Le recueil des données s’établissait après la lecture des dossiers des patients hospitalisés sur cette période et décédés.
Résultats : Nous avons recensé 34 sédations dont 56 % à l’USP de Rouen. Douze pour cent des patients avaient rédigés leurs directives anticipées (DA). Il existait une procédure collégiale avec l’induction d’une sédation dans 65 % des cas. La technique sédative la plus utilisée était l’introduction et majoration progressive d’une dose de fond de midazolam. Les sédations étaient, pour la majorité, induites dans les situations d’urgences palliatives, profonde d’emblée et en l’absence de consentement possible. L’intentionnalité des sédations pour les hémorragies, dyspnée et agitation appartenait à l’axe D2 (sédation de durée indéterminée) ; les souffrances existentielles, douleur et morales à l’axe D3 (sédation maintenue jusqu’au décès).
Conclusion : SEDAPALL serait une aide au cours des procédures collégiales indispensable avant toute sédation. Il préciserait l’intentionnalité de la sédation et favoriserait la compréhension de ce traitement par les professionnels intervenants auprès de ces patients.
Objectives: There is scarce information about sedation in nursing homes at the end of life. We aimed to assess (1) the use of sedatives generally and “sedatives with continuous effect,” based on objective operational criteria, within the last week of life in nursing homes and (2) factors associated with this treatment.
Design: Retrospective cohort study, using the nursing homes' medical records.
Setting and Participants: Residents who died in 4 German nursing homes from January 2015 to December 2017 and whose medical records were available (n = 512).
Methods: Sedatives analyzed were those recommended by guidelines for “palliative sedation”: benzodiazepines, levomepromazine, haloperidol (=5 mg/d), and propofol. The definition of “sedatives with continuous effect” and doses judged as at least moderately sedating were consented by palliative care clinicians and pharmacists, based on the literature. Descriptive statistics and multivariate logistic regression analysis were performed (R version 3.6.1).
Results: Overall, 110/512 (21%) deceased residents received a sedative at least once during the last week of life, 46/512 (9%) “sedatives with continuous effect.” Oral lorazepam was used most frequently. Eleven of 512 (2%) residents received doses judged as at least moderately sedating. The term sedation was not used. Most frequent indications were agitation (58/110; 53%) and anxiety (35/110; 32%); no indication was noted for 36/110 (33%) residents. The resident's involvement in the decision for sedatives was documented in 3/110 (3%). Multivariate logistic regression analysis showed significant associations between use of sedatives and age (OR = 0.94, P < .001) as well as institution (P < .001).
Conclusions and Implications: Our data indicate a lower prevalence of sedation compared to international data and considerable differences regarding prevalence between institutions. These differences, potential setting-specific challenges, and need for support measures for consistent best practice of sedation in nursing homes should be further explored.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Depuis plusieurs décennies, le mouvement des soins palliatifs a développé des pratiques sédatives en cas de symptômes insupportables en fin de vie. Ces pratiques, à vrai dire presque confidentielles, ont été mises en lumière par l’évolution législative de 2016 avec la loi dite Claeys Leonetti. Mais il existe un risque réel de « sédater trop vite et trop fort des patients mal évalués » par des acteurs peu formés, et confondant souvent les niveaux et les intentionnalités de sédations. En effet, une réflexion éthique est indispensable, tout comme une vraie connaissance de la démarche palliative, pour adapter avec justesse et mesure des stratégies de sédation. Avec l’aide des sociétés savantes, la HAS a publié en deux ans des documents rigoureux, recommandant notamment un outil désormais incontournable permettant de préciser l’intentionnalité de la sédation, la fiche SEDAPALL.
Background: French legislation about sedation in palliative medicine evolved in 2016 with the introduction of a right to deep and continuous sedation, maintained until death. The objective was to describe midazolam sedation at the COL (Centre Oscar Lambret [Oscar Lambret Center], French regional center for cancer control), in order to establish a current overview before the final legislative changes.
Methods: Descriptive, retrospective and single-center study, concerning major patients in palliative care hospitalized from 01/01/2014 to 12/31/2015, who had been sedated by midazolam. The proven sedations (explicitly named) and the probable sedations were distinguished.
Results: A total of 54 sedations were identified (48 proven, 6 probable). Refractory symptoms accounted for 48.1% of indications, complications with immediate risk of death 46.3%, existential suffering 5.6%. Titration was performed in 44.4% of cases. Sedation was continuous until death for 98.1% of the cases. Probable sedation had a higher failure rate than proven sedation. Significant differences existed for the palliative care unit compared to other units regarding information to the patient, their consent, anticipation, mention by correspondence and carrying out titrations. When patients had already been treated with midazolam, the induction doses, initial maintenance doses, and doses at the time of death were significantly higher. For those receiving opioids, the maintenance dose at the time of death was higher. No comparison found a difference in overall survival.
Conclusions: After a sufficient follow-up has enabled teams to familiarize with this new legislation, reflection on sedation should be conducted to adapt to final recommendations.
L 'affaire de notre confrère de Normandie mis en cause pour avoir utilisé du midazolam à domicile a agi comme un détonateur. Comme une soudaine prise de conscience du fait que l’on meurt aussi chez soi et que l’on doit pouvoir bénéficier des mêmes soins et accompagnement, quel que soit le lieu.
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Physicians in the intensive care unit (ICU), in charge of patients with severe acute respiratory distress syndrome (ARDS) due to Coronavirus (SARS-CoV-2), face a difficult dilemma: to improve gas exchange, oxygen transport and tissue oxygenation using mechanical ventilation (MV), or to limit ventilator-induced lung injury (VILI) associated with prolonged MV. In addition, while MV often requires deep sedation with or without neuromuscular blocking agents (NMBA) to tolerate MV and limit the risk of VILI, deep and/or prolonged sedation is associated with several complications, e.g. delirium, withdrawal syndromes, propofol -related infusion syndrome (PRIS), haemodynamic instability, ICU acquired muscle weakness, and difficult MV weaning leading to a sustained utilisation of ICU resources, As the Coronavirus pandemic is associated with a shortage of sedatives and NMBA drugs in several countries including France, it is critical to discuss the role of sedation in this particular context.
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De plus en plus souvent, nous entendons parler d'euthanasie : que ce soit par les médias, par les politiques, par les services publics ou par diverses associations, la thématique est sur toutes les langues.
Cependant, force est de constater que le sujet est bien souvent abordé avec méconnaissance ou parti pris. Mon souhait est donc d'intervenir dans cet ouvrage pour décrire le plus fidèlement possible la très dure réalité qui entoure le processus d'euthanasie.
Non, la vie dans nos hôpitaux n'est pas - ou n'est plus - un long fleuve tranquille. Elle est en crue permanente, avec de nombreux débordements quotidiens. En tant que membre du personnel soignant, je constate combien il nous est difficile à nous, infirmiers, médecins, psychologues, assistants sociaux, de garder la tête hors de l'eau, lorsqu'il est question de ce qu'on appelle pompeusement "éthique".
Formée en France, je travaille en Belgique depuis 2015. Je suis médecin généraliste, diplômée en soins palliatifs après deux années de formation théorique et de stages. Avant 2015, j'ai travaillé en France en équipe mobile de soins palliatifs intra et extra hospitalière, ainsi qu'en unité de soins palliatifs.
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Objective: This retrospective study aimed to identify the association between long-term psychological impairment and total sedation received during venovenous extracorporeal life support (VV-ECLS) for acute respiratory failure (ARF).
Design: This observational retrospective study compared characteristics between patients with and without long-term psychological morbidity at long-term follow-up after VV-ECLS for ARF.
Setting: A single institutional experience in a quaternary referral academic medical center in the United States.
Patients: Patients who received VV-ECLS for ARF between January 1, 2015, and April 1, 2017, were identified for selection. Presence of psychiatric morbidity (anxiety and/or depression) was determined with the Hospital Anxiety and Depression Subscale battery at long-term follow-up.
Interventions: No interventions were made during this retrospective observational study.
Measurements and Main Results: A total of 42 patients (21 male, 21 female, median age 49 [interquartile range {IQR} 36-57]) completed a telephone interview a median of 14.6 (IQR 7.7-21.1) months after ECLS decannulation. Cohorts were defined as possessing any psychiatric morbidity (anxiety and/or depression) as defined by the Hospital Anxiety and Depression Subscale battery (n = 22 [52%]) versus no psychiatric morbidity (n = 20 [48%]) at long-term follow-up. Patients who had clinically significant psychiatric morbidity received a median of 15.0 (IQR 11.0-17.0) days of continuous intravenous sedation compared with patients who had no psychiatric morbidity, who received a median of 10.0 (IQR 6.5-13.5) days of intravenous sedation; (p = 0.02).
Conclusions: This retrospective analysis identified a significant association between the presence of long-term post-VV-ECLS psychiatric symptoms and the total number of days of intravenous sedation.
Les notions fondamentales des soins palliatifs sont présentées en fiches synthétiques, avec des cas concrets et des situations cliniques. L'ouvrage aborde la douleur, les symptômes, le soin de confort, la souffrance psychique, la sédation ou encore l'éthique.
RATIONALE: The palliative sedation therapy is defined as the intentional reduction of the alert state, using pharmacological tools. Propofol is a short-acting general anesthetic agent, widely used for induction and maintenance of general anesthesia and rarely employed in palliative care.
PATIENT CONCERNS AND DIAGNOSES: This case series describes 5 pediatric oncology inpatients affected by relapsed/refractory solid tumors received palliative sedation using propofol alone or in combination with opioids and benzodiazepines.
INTERVENTIONS AND OUTCOMES: Five terminally ill children affected by solid tumors received propofol-based palliative sedation. All patients were previously treated with opioids and some of them reduced the consumption of these drugs after propofol starting. In all cases the progressive increase of the level of sedation until the death has been the only effective measure of control of refractory symptoms related todisease progression and psychological suffering.
LESSONS: We evaluated the quality of propofol-based palliative sedation in a series of pediatric oncology patients with solid tumors at the end of their life. We concluded that propofol represents an effective and tolerable adjuvant drug for the management of intractable suffering and a practicable strategy for palliative sedation in pediatric oncology patients at the end of their life.
Dans un contexte de complication aiguë à risque vital immédiat ou de symptôme réfractaire, la mise en œuvre d’une sédation n’est pas une pratique anodine pour les équipes soignantes. La titration est une étape incontournable et essentielle. Zoom sur les aspects pratico-pratiques de la mise en œuvre d’une sédation par midazolam chez l’adulte en situation palliative.
The increasing prevalence of euthanasia in Belgium has been linked to changing attitudes. Using National health survey data (N = 9651), we investigated Belgian adults’ intention to ask a physician for euthanasia or continuous deep sedation in the hypothetical scenario of a terminal illness and examined its connection to sociodemographic and health characteristics. Respectively, 38.3 and 25.8% could envisage asking for euthanasia and continuous deep sedation. Those with very bad to fair subjective health and with depression more likely had an intention to ask for euthanasia, which suggests need for attention in the evaluation of requests from specific patient groups.
L’accompagnement médical de la vie finissante a évolué très fortement ces dernières décennies. Les décisions d’arrêts de traitements susceptibles de prolonger la vie sont devenues la norme des fins de vie en réanimation. Ailleurs la pratique de la sédation influence souvent le moment de la mort en raccourcissant la durée des agonies. L’intention du médecin de faire mourir son malade doit être reconnue et clairement assumée. Mais elle est secondaire par rapport à ce que souhaite le malade lui-même dans sa fin de vie. Quand celui-ci n’est plus capable de s’exprimer, les membres de sa famille ou ceux qu’il a désignés peuvent déterminer ce qu’aurait été sa volonté. Alors le médecin peut s’appuyer sur ces informations pour que le malade décède dans les meilleures conditions possibles correspondant à ses souhaits y compris un raccourcissement de son agonie. Radicalement autre est l’acte euthanasique réservé à ceux qui sont capables de demander une mort lucide et volontaire dans les conditions légales des pays qui l’ont rendu possible.
Les soins palliatifs et l’accompagnement des mourants s’inscrivent dans le mouvement plus large d’individualisation de la mort. Centrée sur la notion d’autonomie, la mort idéale se veut aujourd’hui discrète, inconsciente et hygiénique. Impensable sans une importante expertise médicale qui permet de soulager la douleur physique, de contrôler chimiquement l’angoisse et la peur, de neutraliser les odeurs et les traces de l’agonie, cet idéal suppose une tension constante entre contrôle et dépendance. Emblématique de ce que le sociologue Nikolas Rose nomme la biocitoyenneté, soit une forme de citoyenneté centrée sur une politisation de la santé individuelle et sur l’émergence de revendications identitaires reliées à des questions d’ordre biomédical, le mouvement en faveur des soins palliatifs s’inscrit en fait dans le processus global de pharmaceuticalisation caractérisant les sociétés occidentales contemporaines. Partant d’un questionnement sociologique sur l’usage croissant de la sédation profonde dans la gestion biomédicale de la fin de vie, cet article propose d’analyser le phénomène du contrôle médicamenteux de la souffrance sous l’angle de la pharmaceuticalisation. Au-delà de la thèse du déni de la mort et du refus de la douleur, il s’agira plutôt de comprendre que la sédation profonde est indissociable d’une volonté de contrôle et d’optimisation de soi propre à la biocitoyenneté. Loin d’un simple refus de la douleur, la norme de la sédation profonde indique plutôt que la douleur « improductive », c’est-à-dire celle qui ne s’inscrit pas dans une logique thérapeutique, méliorative ou expérimentale, tant à devenir socialement intolérable. La sédation profonde apparaît ainsi à la fois comme la limite et l’expression ultime de la biocitoyenneté.
BACKGROUND: Published reports of continuous palliative sedation therapy (CPST) suggest heterogeneity in practice. There is a paucity of reports that compare practice with clinical guidelines.
OBJECTIVES: To assess adherence of continuous palliative sedation practices with criteria set forth in local clinical guidelines, and to describe other features including prevalence, medication dosing, duration, multidisciplinary team involvement, and concurrent therapies.
DESIGN: Retrospective chart review. Settings/Subjects: We included cases in which a midazolam infusion was ordered at the end of life. Study sites included four adult hospitals in the Calgary health region, two hospices, and a tertiary palliative care unit.
MEASUREMENTS: Descriptive data, including proportion of deaths involving palliative sedation therapy, number of criteria documented, midazolam dose/duration, concurrent symptom management therapies, and referrals to spiritual care, psychology, or social work.
RESULTS: CPST occurred in 602 out of 14,360 deaths (4.2%). Full adherence to criteria occurred in 7% of cases. The most commonly missed criteria were: a "C2" goals-of-care designation order (comfort care focus in the imminently dying) (84%) and documentation of imminent death in the chart (55%). Concurrent medical therapies included opioids in 98% of cases and intravenous hydration in 85% of cases. Few referrals were made to multidisciplinary care teams.
CONCLUSIONS: We found low adherence to palliative sedation guidelines. This may reflect the perception that some criteria are redundant or clinically unimportant. Future work could include a study of barriers to guideline uptake, and guideline modification to provide direction on concurrent therapies and multidisciplinary team involvement.
BACKGROUND: Assisted dying and continuous deep sedation (CDS) are controversial practices. Little is known about the perceptions of physicians and surrogates about these practices for patients with advanced dementia.
OBJECTIVES: To describe and compare physician and surrogate agreement with the use of assisted dying and CDS in advanced dementia.
DESIGN, SETTING, SUBJECTS: Physicians (n = 64) and surrogates (n = 168) of persons with advanced dementia were recruited as part of a randomized controlled trial in Switzerland that tested decision support tools in this population.
METHODS: At baseline, the participants were asked about their agreement with assisted dying and CDS in advanced dementia using the following response options: "completely agree," "somewhat agree," "somewhat disagree," "completely disagree," and "do not know." Multivariable logistic regressions compared the likelihood that surrogates versus physicians would completely or somewhat agree (vs. completely or somewhat disagree) with these practices.
RESULTS: The physicians and surrogates, respectively, had a mean age (SD) of 50.6 years (9.9) and 57.4 years (14.6); 46.9% (n = 30/64) and 68.9% (n = 115/167) were women. A total of 20.3% (n = 13/64) of the physicians and 47.0% (n = 79/168) of the surrogates agreed with assisted dying in advanced dementia. Surrogates were significantly more likely to agree with this practice than physicians (adjusted odds ratio, 3.87; 95% CI: 1.94, 7.69). With regard to CDS, 51.6% (n = 33/64) of the physicians and 41.9% (n = 70/169) of the surrogates agreed with this practice, which did not differ significantly between the groups.
CONCLUSIONS: The surrogates were more agreeable to considering assisted dying in the setting of advanced dementia than the physicians, and about half of the participants in both groups reported CDS to be an appropriate option for this population.
BACKGROUND: Most people in the United States and other countries cite their preferred location of death as their homes. However, intractable symptoms sometimes require hospitalization, especially if significant sedation becomes necessary. For over a decade, Hospice of Central New York has been using compounded phenobarbital suppositories with individuals in whom adequate sedation has not been achieved using sufficient doses of antipsychotics or benzodiazepines but prefer to remain in their homes.
OBJECTIVES: (1) Describe the use of phenobarbital suppositories in homes for the purpose of sedation. (2) Understand patient characteristics of potential users and those in whom suppositories were actually used. (3) Measure time to death after initiating the phenobarbital suppositories.
SETTING: Medicare-certified not-for-profit hospice organization in New York State.
METHOD:: Retrospective case series.
RESULTS: Of 1675 patients enrolled in hospice over an 18-month period, phenobarbital suppositories were placed in the homes of 90 patients for potential use. Suppositories were initiated in 31 of the 90 patients. Agitated delirium was the major symptom for which suppositories were placed and initiated. Both groups had a greater prevalence of cancer diagnoses than the target population. The mean time to death after initiation of phenobarbital suppositories was 38.8 hours. None of the users were hospitalized.
CONCLUSION: The use of compounded phenobarbital suppositories for the purpose of palliative sedation is an alternative for patients and families who desire to remain home despite refractory symptoms.