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.
OBJECTIVES: In 2016, a new law was adopted in France granting patients the right, under specific conditions, to continuous deep sedation until death (CDSUD). The goal of this study was to measure the frequency of requests for CDSUD from patients in palliative care.
METHODS: The data collected from the medical records of patients in palliative care units (PCU) or followed by palliative care support teams (PCST) in the Rhône-Alpes area, who died after CDSUD, focused on the patient's characteristics, the drugs used (and compliance with regulatory processes).
RESULTS: All 12 PCU and 12 of the 24 PCST were included. Among the 8500 patients followed, 42 (0.5%) requested CDSUD until death. The patients were: 65.7 (SD=13.7) years old, highly educated (69%), had cancer (81%), refractory symptoms (98%) and mostly psychoexistential distress (69%). The request was rejected for 2 (5%) patients and delayed for 31 (74%) patients. After a delay of a mean 8 days, 13 (31%) patients were granted CDSUD. The drug used was midazolam at 115 mg/24 hours (15-480), during a mean of 3 days. PCUs used lower dosages than PCSTs (83 vs 147), with significantly lower initial doses (39 mg vs 132 mg, p=0.01). A life-threatening condition was recorded in 13 cases (31%) and a collegial decision was taken in 25 cases (60%).
CONCLUSION: This study highlights the low rate of request and the even lower rate of CDSUD in specialised palliative care. However, the sedation for psychoexistential distress and the lack of procedure records raise ethical questions.
PURPOSE: The undesired effects of midazolam can be life-threatening. This paper delineates the findings related to the pharmacokinetics, adverse effects and drug-drug interactions as well as associated therapeutic implications for safe midazolam use.
METHODS: A systematic review of literature was conducted.
RESULTS: The pharmacokinetics of midazolam depends on hepatic and renal functions, fat tissue mass, route and duration of administration, as well as potential drug-drug interactions. Palliative care patients constitute a high-risk group prone to side effects of drugs, due to polytherapy and multi-organ failure.
CONCLUSION: Midazolam is one of three most frequently administered drugs in palliative care. The indications for its use include anxiety, dyspnea, seizures, vomiting refractory to treatment, agitation, myoclonus, status epilepticus, restlessness, delirium, pruritus, hiccups, insomnia, analgosedation, palliative sedation and preventing or counteracting undesired effects of ketamine.
This paper focuses on the practice of injecting patients who are dying with a relatively high dose of sedatives in response to a catastrophic event that will shortly precipitate death, something that we term 'crisis sedation.' We first present a confabulated case that illustrates the kind of events we have in mind, before offering a more detailed account of the practice. We then comment on some of the ethical issues that crisis sedation might raise. We identify the primary value of crisis sedation as allowing healthcare professionals to provide some degree of reassurance to patients, their families and the professionals who are caring for them. Next we focus on the issue of informed consent. Finally, we ask whether continuous deep sedation might be preferable to crisis sedation in scenarios where potential catastrophic events can be anticipated.
Background : Limited information is available regarding the detailed clinical patterns of palliative sedation (PS), i.e., the symptom control rate, salvage medication, and the effectiveness of intermittent PS (IPS) versus continuous PS (CPS).
Objectives : The primary aim was to investigate clinical outcomes of PS in a real clinical setting.
Methods : Clinical information was prospectively collected for patients who were treated according to a prescribed protocol and assessment tools in a hospice unit affiliated with a tertiary cancer center between September 2015 and March 2017. Data were analyzed retrospectively. Midazolam was used as the first medication for PS, and propofol and phenobarbital were subsequently used as salvage medications. Indications of PS, the depth of sedation, the quality of sleep, and the level of consciousness were assessed.
Results : A total of 306 patients were enrolled, 89 of whom (29.1%) received PS. No difference in survival time was found between patients with and without PS (median survival, 34.0 vs 25.0 days, p=0.109). Delirium was the most common indication of PS. The symptoms of 73 (82.0%) of 89 patients with PS were relieved with midazolam. Twelve (75.0%) of 16 midazolam-failure patients responded to propofol, 5 of whom (31%) exhibited respiratory depression. Of the 89 patients receiving PS, 61 (68.5%) received IPS and 28 patients (31.5%) received CPS. The median survival times from PS initiation to death were 6 days in the IPS group and 1 day in the CPS group (p<0.001). Interestingly, consciousness levels were significantly improved after IPS in the delirium group compared with those in the other group (41.7% vs 16.7%, p=0.002).
Conclusion : The refractory symptoms of end-of-life cancer patients can ultimately be relieved with various medications for PS. IPS may improve the consciousness level of patients with delirium.
Nous avons cherché à savoir si le dispositif Leonetti-Claeys relatif à la sédation (DLC) relève d’une sédation palliative ou terminale, et comment se sont positionnées les dernières recommandations professionnelles à cet égard. Il s’avère que le DLC ne cherche pas à diminuer, de façon ajustée et proportionnée, la perception de symptômes réfractaires, dans le respect des enjeux relationnels de la fin de vie — ce qui correspondrait à la sédation palliative. Il consiste davantage à maîtriser les modalités du mourir par l’application standardisée d’une procédure de déconnexion psychique et relationnelle, et constitue dès lors un type de sédation terminale. Derrière ce changement de paradigme, on peut craindre une double réduction : celle de la dignité à la maîtrise des conditions du mourir, et celle de la relation de soins à un « droit à ». À l’inverse, les recommandations publiées par la Société française d’accompagnement et de soins palliatifs (SFAP) et la Haute Autorité de santé (HAS) se sont efforcées de replacer le DLC dans une visée palliative. Fait nouveau, elles distinguent maintenant entre sédation proportionnée et sédation disproportionnée. Mais la question est posée de savoir si le registre même des efforts déployés, hautement protocolisés, ne risque pas pourtant de renforcer la logique technicienne du DLC. Par ailleurs, le tableau comparatif de la HAS entre le DLC et l’euthanasie est erroné. Au final, le DLC induit une prise en charge plus intensive que palliative. Tel est le paradoxe d’une réponse technicienne aux enjeux relationnels de la souffrance en fin de vie.
BACKGROUN: Awareness and pain during palliative sedation is typically assessed by observational scales, but the use of such scales has been put into question.
CASE PRESENTATION:: A woman in her mid-80s was admitted to a palliative care unit, presenting with chronic lymphatic leukemia, depression, and a cerebrovascular accident, with right-sided hemiplegia and aphasia. The patient was unable to eat and was suffering from nausea and vomiting. Before admission, the patient had expressed her desire to discontinue treatment on several occasions.
CASE MANAGEMENT: The decision was made to initiate palliative sedation. The patient consented to take part in a study to assess level of comfort and pain using two monitoring devices (NeuroSense monitor and Analgesia Nociception Index monitor).
CASE OUTCOME: The patient died 90 h after initiation of palliative sedation. Titration of the medication was challenging and sedation was not deep enough during the first 2 days. Thirteen assessments made with the Ramsay Sedation Scale showed that the patient was considered to be in a deep sleep, while in fact the NeuroSense monitor indicated otherwise.
CONCLUSION: This case demonstrates the feasibility and potential advantages of using monitoring devices to objectify assessments of pain and discomfort in palliatively sedated patients.
Objectifs: Dans le cadre de la loi Claeys-Leonetti, les proches de patients mis sous sédation profonde et continue jusqu’au décès ont pu, au cours de l’expérience de l’auteur en unité de soins palliatifs, évoquer des préoccupations intenses qui les ont poussé parfois à demander « d’accélérer les choses ». L’objectif de ce travail était de trouver des réponses aux questions suivantes : l’accompagnement des proches de patients sédatés a-t-il des particularités ? Des études ont-elles été menées sur ce sujet ? Que proposent-elles ?
Méthodes: N’ayant trouvé aucune étude française sur le vécu des proches, ni leur accompagnement pendant la sédation profonde et continue jusqu’au décès, une revue de la littérature internationale a été réalisée sur 11 études dont les résultats ont été publiés de 2004 à 2016.
Résultats: La sédation peut entraîner chez les proches des émotions négatives pouvant jusqu’à la détresse émotionnelle. Elles sont liées à des préoccupations concernant le bien-être du patient (diminution insuffisante des symptômes, sentiment de diminuer le temps de vie, etc.) et le bien-être des proches eux-mêmes (incapacité à communiquer, épuisement, privation de sommeil, confrontation à l’altération physique, mauvaise préparation aux changements, etc.). Elles augmentent avec la durée de la sédation, pouvant entraîner le désir de hâter la mort. Le besoin d’information, d’implication dans la décision, de dire au revoir, de participer aux soins et de soutien sont identifiés. Leur non-satisfaction entraîne également des souffrances.
Conclusion: Alors que la sédation véhicule l’illusion de tranquillité, le vide et les difficultés qu’elle entraîne nécessitent un accompagnement de qualité. Une formation des professionnels de santé sur les besoins des familles ainsi qu’à la pratique de la sédation semble indispensable.
On se souvient que la loi du 2 février 2016 s'était saisie de la pratique sédative en soins palliatifs pour en faire un nouveau droit pour les malades en phase terminale. Elle accorde au patient se sachant atteint d'une maladie incurable avec un pronostic vital engagé à court terme, le droit de demander une sédation profonde et continue jusqu'au décès, dans certaines circonstances.
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'Palliation sedation' is a widely used term to describe the intentional administration of sedatives to reduce a dying person's consciousness to relieve intolerable suffering from refractory symptoms. Research studies generally focus on either 'continuous sedation until death' or 'continuous deep sedation'. It is not always clear whether instances of secondary sedation (i.e. caused by specific symptom management) have been excluded. Continuous deep sedation is controversial because it ends a person's 'biographical life' (the ability to interact meaningfully with other people) and shortens 'biological life'. Ethically, continuous deep sedation is an exceptional last resort measure. Studies suggest that continuous deep sedation has become 'normalized' in some countries and some palliative care services. Of concern is the dissonance between guidelines and practice. At the extreme, there are reports of continuous deep sedation which are best described as non-voluntary (unrequested) euthanasia. Other major concerns relate to its use for solely non-physical (existential) reasons, the under-diagnosis of delirium and its mistreatment, and not appreciating that unresponsiveness is not the same as unconsciousness (unawareness). Ideally, a multiprofessional palliative care team should be involved before proceeding to continuous deep sedation. Good palliative care greatly reduces the need for continuous deep sedation.
Sedation therapy is a potential solution to providing relief from refractory symptoms at end of life. The aim of this study was to investigate actual sedation practice and physician characteristics associated with the use of sedation for terminally ill cancer patients in South Korea. A retrospective review was conducted on consecutive patients who had died from cancer at seven tertiary medical centers between January 2010 and October 2015. The use of sedation was defined as the administration of sedative agents to relieve intolerable symptoms within the last 2 weeks preceding death. Patients and physician characteristics and information on the use of sedation were collected.A total of 8309 patients were included in the study. Sedatives were administered in 1334 patients (16.1%) for the following indications: delirium in 39.3%, intractable pain in 23.1%, and dyspnea in 21.9%. Median duration of sedation from initiation to death was 3 days. The use of sedation depended on physician specialty and experience. Family physicians used sedation most often (57.6%), followed by medical oncologists (13.9%), other internists (10.7%), and surgical oncologists (9.4%). The use of sedation was highest for physicians with >5 to 10 years practice experience (22.1%) and lowest for those in practice for 5 years or less (10.2%). The proportion of patients receiving sedation also varied markedly across participating institutions (range, 7.0%-49.7%).This large cohort study provides insight into sedation practice for terminally ill cancer patients in South Korea. Our study shows that the use of sedation depends on physician background and institution. A nation-wide guidelines and continued education on end-of-life sedation are required in South Korea.
OBJECTIVE: To investigate whether and when palliative sedation was discussed with hospice patients with cancer and/or with their families and factors associated with patient involvement in such discussions.
METHODS: Medical records of all patients with cancer who died in an Italian hospice in 2014-2015 (N = 326) were retrospectively reviewed. Multiple logistic regression was used to assess the association between patients' characteristics and palliative sedation discussion with the patient versus palliative sedation discussion only with the family.
RESULTS: Palliative sedation discussion was in 51.8% of the cases reported in the record. In most of the cases, discussions were conducted pre-emptively. Palliative sedation was used for 67.3% of the patients who were involved in the discussion and for 32.7% of the patients when the topic was discussed only with the family. Patient involvement in palliative sedation discussions was negatively associated with living with others (OR 0.34, CI 0.15; 0.77), and positively associated with awareness of prognosis (OR 5.61, CI 2.19; 14.33) and days of survival after hospice admission (OR 3.41, CI 1.55; 7.51).
CONCLUSION: Policies encouraging patient involvement in palliative care decision-making, including palliative sedation, should be implemented and their adoption should be carefully examined. Prospective studies addressing this topic are needed.