Le Quotidien du médecin hebdo publie, en partenariat avec le Centre national des soins palliatifs et de la fin de vie, une sondage sur la loi Leonetti-Claeys. Les Français comptent davantage sur la personne de confiance que les directives anticipées. Un constat en léger décalage avec l'esprit de la loi.
[Résumé de l'article]
La loi de février 2016 sur les droits des patients et la fin de vie a créé pour les professionnels de santé un devoir de mettre en œuvre toute pratique sédative nécessaire pour soulager les souffrances réfractaires en fin de vie. Dans certains cas très spécifiques, elle a même créé un véritable droit à une sédation irréversible (maintenue jusqu’au décès). La typologie SEDAPALL est un outil d’aide à la réflexion et à la prise de décision pour la mise en œuvre des différentes pratiques sédatives à visée palliative en fin de vie. Elle permet de les différencier selon trois axes : la durée prévue, la profondeur et la nature du consentement. À ce jour, il n’existe pas de travaux spécifiques sur les pratiques sédatives pour des patients gériatriques. À l’aide de vignettes cliniques concernant des situations gérontologiques, il est proposé de discuter des différentes problématiques éthiques soulevées par ces pratiques sédatives. D’éventuelles spécificités pour le grand âge sont discutées tout en rappelant le droit pour chaque patient, y compris gériatrique, à une mort apaisée, si besoin par une altération pharmacologique de sa vigilance.
At our community teaching hospital, orders for end of life often lacked instructions to titrate opioids based on evidence-based principles and failed to address nonpain symptoms. An order set and a nursing-driven opioid titration protocol were implemented in August 2016 after extensive education. The purpose of this retrospective preintervention and postintervention study was to evaluate the impact of this intervention on the quality of end-of-life orders. We evaluated 69 patients with terminal illness receiving morphine infusions. After implementation, more morphine infusion orders included an as-needed bolus dose with an objective indication and appropriate instructions on when and how to titrate the infusion compared with before the intervention (94.6% vs 18.8%, P < .0001). Morphine infusion orders were also significantly more likely to include a maximum dose (P = .041) and an initial bolus dose (P < .0001). In addition, prescribers were more likely to order additional medications to manage nausea/vomiting, constipation, anxiety, or pain using a nonopioid (P < .05 for all). In this study, implementation of a standardized opioid titration protocol and symptom management order set led to an improvement in the quality of morphine infusion orders for pain management at the end of life and increased the use of medications to manage nonpain symptoms in dying patients.
La mort d’un patient en situation palliative sous opioïde génère parfois un fort sentiment de culpabilité. « Ai-je précipité le décès du patient avec mon traitement opioïde ? » Bien que la littérature soit très claire quant à la sécurité des opioïdes utilisés correctement pour la gestion de la dyspnée ou de la douleur en soins palliatifs, il se peut que, dans certaines situations, on puisse en douter. Le médecin, face à sa crainte de nuire en administrant des opioïdes, pourrait être tenté de sous-traiter le patient, au risque de l’abandonner à sa souffrance. D’un autre côté, l’impuissance face à l’intensité de la souffrance du patient pourrait amener le médecin à vouloir le soulager à tout prix, au risque d’un geste euthanasiant. Cet article propose un aperçu du principe du double effet, comme élément de réponse à ce dilemme éthique.
PURPOSE: The purpose of this study was to evaluate end-of-life resource utilization and costs for prostate cancer patients during the last year of life in Korea.
MATERIALS AND METHODS: The study used the National Health Information Database (NHIS-2017-4-031) of the Korean National Health Insurance Service. Healthcare claim data for the years 2002 through 2015 were collected from the Korean National Health Insurance System. Among 83,173 prostate cancer patients, we enrolled 18,419 after excluding 1,082 who never claimed for the last year of life.
RESULTS: From 2006 to 2015, there was a 3.2-fold increase the total number of prostate cancer decedents. The average cost of care during the last year of life increased over the 10-year period, from 14,420,000 Korean won to 20,300,000 Korean won, regardless of survival time. The cost of major treatments and medications, other than analgesics, was relatively high. Radiologic tests, opioids, pain control, and rehabilitation costs were relatively low. Multiple regression analysis identified age and living in rural area as negatively associated with prostate cancer care costs, whereas income level and a higher number of comorbidities were positively associated.
CONCLUSIONS: Expenditure of prostate cancer care during the last year of life varied according to patient characteristics. Average costs increased every year. However, the results suggest underutilization of support services, likely due to lack of alternative accommodation for terminal prostate cancer patients. Further examination of patterns of utilization of healthcare resources will allow policymakers to take a better approach to reducing the burden of prostate cancer care.
BACKGROUND/OBJECTIVES: To evaluate differences in end-of-life cost trajectories for cancer patients treated through Medicare versus by the Veterans Health Administration (VA).
DESIGN: A retrospective analysis of VA and Medicare administrative data from FY 2010 to 2014. We employed three-level generalized estimating equations to evaluate monthly cost trajectories experienced by patients in their last year of life, with patients nested within hospital referral region.
SETTING: Care received at VA facilities or by Medicare-reimbursed providers nationwide.
PARTICIPANTS: A total of 36,401 patients dying from cancer and dually enrolled in VA and Medicare.
MEASUREMENTS: We evaluated trajectories for total, inpatient, outpatient, and drug costs, using the last 12 months of life. Cost trajectories were prioritized as costs are not directly comparable across Medicare and VA. Patients were assigned to be VA-reliant, Medicare-reliant or Mixed-reliant based on their healthcare utilization in the last year of life.
RESULTS: All three groups experienced significantly different cost trajectories for total costs in the last year of life. Inpatient cost trajectories were significantly different between Medicare-reliant and VA-reliant patients, but did not differ between VA-reliant and Mixed-reliant patients. Outpatient and drug cost trajectories exhibited the inverse pattern: they were significantly different between VA-reliant and Mixed-reliant patients, but not between VA-reliant and Medicare-reliant patients. However, visual examination of cost trajectories revealed similar cost patterns in the last year of life among all three groups; there was a sharp rise in costs as patients approach death, largely due to inpatient care.
CONCLUSION: Despite substantially different financial incentives and organization, VA- and Medicare-treated patients exhibit similar patterns of increasing end-of-life costs, largely driven by inpatient costs. Both systems require improvement to ensure quality of end-of-life care is aligned with recommended practice.
Objective: To explore differences in end-of-life healthcare utilisation and medication costs between patients with haematological malignancies and patients with solid tumours.
Methods: Data on deceased patients with cancer were selected from the sample cohort data of health insurance claims from 2008 to 2015 in South Korea. They were categorised into two groups: patients with haematological malignancies and patients with solid tumours. Longitudinal data comprised the patient-month unit and aggregated healthcare utilisation and medication cost for 1 year before death. Healthcare utilisation included emergency room visits, hospitalisation and blood transfusions. Medication costs were subdivided into anticancer drugs, antibiotics, opioids, sedatives and blood preparation. Generalised linear mixed models were used to evaluate differences between the two groups and time trends.
Results: Of the 8719 deceased patients with cancer, 349 died from haematological malignancies. Compared with solid tumours, patients with haematological malignancies were more likely to visit the emergency room (OR=1.36, 95% CI 1.10 to 1.69) and receive blood transfusions (OR=5.44, 95% CI 4.29 to 6.90). The length of hospitalisation of patients was significantly different (difference=2.49 days, 95% CI 1.75 to 3.22). Medication costs, except for anticancer treatment, increased as death approached. The costs of antibiotics and blood preparations were higher in patients with haematological malignancies than in those with solid tumours: 3.24 (95% CI 2.14 to 4.90) and 4.10 (95% CI 2.77 to 6.09) times higher, respectively.
Conclusions: Patients with haematological malignancies are at a higher risk for aggressive care and economic burden at the end of life compared with those with solid tumours. Detailed attention is required when developing care plans for end-of-life care of haematological patients.
OBJECTIVE: To describe medication utilization patterns by pediatric inpatients with cancer during their last week of life.
METHODS: This retrospective study used data from the Vizient Clinical Database/Resource Manager, a national compilation of clinical and resource use data from over 100 academic medical centers and affiliates. Patients (0-21 years) with malignancy who died during hospitalization (2010-2017) were included (N = 1659). Medications were categorized as opioid, benzodiazepine, gastrointestinal related, chemotherapy, anti-infectives, or vasopressors. Exposure to each group was ascertained for all patients at 1 week and 1 day prior to death. Factors associated with exposure were examined using generalized estimating equations, and summarized using adjusted odds ratios (aORs).
RESULTS: Over the last week of life, there was increased use of opioids (76% to 82%, aOR = 1.55, P < .001) and benzodiazepines (53% to 66%, aOR = 1.36, P = .02), while gastrointestinal-related medication use decreased (92% to 89%, aOR = 0.69, P = .001). Patients had decreased exposure to chemotherapy (10% to 5%, aOR = 0.46, P < .001) and anti-infectives (82% to 73%, aOR = 0.41, P = .002). Vasopressor use increased as death approached (15% to 28%, aOR = 1.67, P = .04). Factors significantly associated with exposure varied with medication category, and included age, race, length of stay, malignancy type, death in the intensive care unit, history of hematopoietic stem cell transplant, and do-not-resuscitate status.
CONCLUSION: During the week preceding death, administration of symptom management medications increased for children with cancer, but use was not universal. Potentially life-sustaining medications were often continued. Variability in utilization suggests differences in provider/family decision making that warrant further study to develop an evidence-based approach to end-of-life care.
One of the most commonly referenced ethical principles when it comes to the management of dying patients is the doctrine of double effect (DDE). The DDE affirms that it is acceptable to cause side effects (e.g. respiratory depression) as a consequence of symptom-focused treatment. Much discussion of the ethics of end of life care focuses on the question of whether actions (or omissions) would hasten (or cause) death, and whether that is permissible. However, there is a separate question about the permissibility of hastening or causing unconsciousness in dying patients. Some authors have argued that the DDE would not permit end of life care that directly aims to render the patient unconscious. The claim is that consciousness is an objective human good and therefore doctors should not intentionally (and permanently) suppress it. Three types of end of life care (EOLC) practices will be explored in this article. The first is symptom-based management (e.g. analgesia); the second is proportional terminal sedation as a means of relieving suffering (also referred to as palliative sedation or continuous deep sedation); and finally, deliberate and rapid sedation to unconsciousness until death (a practice we call terminal anaesthesia in this paper). After examining the common arguments for the various types of symptom-based management and sedation, we apply the DDE to the latter two types of EOLC practices. We argue that aiming at unconsciousness, contrary to some claims, can be morally good or at least morally neutral in some dying patients.
BACKGROUND: Rotigotine patch, a trans-dermal dopamine agonist, is used acutely to replace oral dopaminergic medications for inpatients with Parkinson's disease where enteral routes are no longer available, and is also an option in end-of-life care where patients can no longer swallow. Concerns regarding acute use of Rotigotine include difficulty achieving dopaminergic equivalence, promotion of delirium/hallucinations and promotion of terminal agitation.
OBJECTIVE: our objectives were to establish: (i) accuracy of Rotigotine prescribing, (ii) rates of delirium/hallucinations and (iii) rates of terminal agitation.
METHOD: we retrospectively evaluated the use of Rotigotine in an inpatient population at a UK teaching hospital. Prescriptions between January 2018 and July 2019 were identified and inpatient records were analysed. OPTIMAL Calculator 2 was used as a gold standard for assessing conversion of oral dopaminergic medication to Rotigotine.
RESULTS: a total of 84 inpatients were included. 25 (30%) patients were prescribed the recommended dose of Rotigotine; 31 (37%) higher and 28 (33%) lower than recommended. A total of 15 of 41 (37%) patients with dementia and 22 of 49 (45%) patients with delirium before initiation of Rotigotine inappropriately received the higher dose; 20 (24%) patients developed new/worsening delirium and 8 (10%) patients developed new/worsening hallucinations; and 59 (70%) patients were dead at time of evaluation, of these 40 (68%) died in hospital, 10 (25%) of whom experienced terminal agitation.
CONCLUSIONS: acute conversion of oral dopaminergic medication to trans-dermal Rotigotine patch remains problematic despite the availability of validated tools. Inappropriate dosing may precipitate or worsen delirium/hallucinations. Use at end-of-life requires further evaluation.
Medicalisation is a pervasive feature of contemporary end of life and dying in Western Europe and North America. In this article, we focus on the relationship between two specific aspects of the medicalisation of dying: deep continuous palliative sedation until death and assisted dying. We draw upon a qualitative interview study with 29 health professionals from three jurisdictions where assisted dying is lawful: Flanders, Belgium; Oregon, USA; and Quebec, Canada. Our findings demonstrate that the relationship between palliative sedation and assisted dying is often perceived as fluid and complex. This is inconsistent with current laws as well as with ethical and clinical guidelines according to which the two are categorically distinct. The article contributes to the literature examining health professionals' opinions and experiences. Moreover, our findings inform a discussion about emergent themes: suffering, timing, autonomy and control - which appear central in the wider discourse in which both palliative sedation and assisted dying are situated, and which in turn relate to the wider ideas about what constitutes a 'good death'.
END-STAGE RENAL DISEASE (ESRD) occurs when individuals have an estimated glomerular filtration rate (GFR) <15 mU(min -1.73 m2) body surface area or require long-term dialysis irrespective of GFR. Depression is common in patients with ESRD, with estimated prevalence rates between 20% and 40%, yet it is underdiagnosed and underrated. Patients with ESRD and depression have longer hospital stays, poorer quality of life, and are twice as likely to die or require hospitalization within a year compared with those without depression. This Fast Fact reviews depression management considerations in ESRD. See Fast Facts #7, 273, and 309 for discussion about depression management in serious illness and Fast Fact #146 for information specific to depression screening in serious illness.
Dexmedetomidine, a selective alpha agonist, is traditionally used briefly for perioperative anesthesia and sedation of mechanically ventilated patients. Reports of its use in patients with opioid-induced hyperalgesia1 and intractable pain and delirium suggested it for patients who otherwise may have required palliative sedation to relieve suffering. We present the protocol developed by the interdisciplinary team in our intensive palliative care unit that allows for safe titrated administration without required vital sign monitoring outside the intensive care unit (ICU) (Supplementary Appendix SA1). We describe its efficacy in eight patients who were receiving comfort-focused care.
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.
Background: Continuous subcutaneous infusion (CSCI) via ambulatory infusion pump (AIP) is a valuable method of pain control in palliative care. When using CSCI, low-dose methadone as add-on to other opioids might be an option in complex pain situations. This study aimed to investigate the effects, and adverse effects, of CSCI for pain control in dying patients, with particular interest in methadone use.
Methods: his was an observational cohort study. Imminently dying patients with pain, admitted to specialized palliative inpatient wards and introduced on CSCI, were monitored daily by staff for symptoms (Integrated Palliative Care Outcome Scale - IPOS), sedation (Richmond Agitation and Sedation Scale – RASS), performance status (Eastern Cooperative Oncology Group - ECOG) and delirium (Confusion Assessment Method - CAM).
Results: Ninety-three patients with a median survival of 4 days were included. Of the 47 patients who survived =3 days, the proportion of patients with severe/overwhelming pain decreased from 45 to 19% (p < 0.001) after starting CSCI, with only a moderate increase in morphine equivalent daily dose of opioids (MEDD). Alertness was marginally decreased (1 point on the 10-point RASS scale, p = 0.001), whereas performance status and prevalence of delirium, regardless of age, remained unchanged.
Both patients with methadone as add-on (MET, n = 13) and patients with only other opioids (NMET, n = 34), improved in pain control (p < 0.05 and 0.001, respectively), despite that MET patients had higher pain scores at baseline (p < 0.05) and were on a higher MEDD (240 mg vs.133 mg). No serious adverse effects demanding treatment stop were reported.
Conclusions: CSCI via AIP is an effective way to reduce pain in dying patients without increased adverse effects. Add-on methadone may be beneficial in patients with severe complex pain.
Many international studies have shown that the process of palliative sedation in an end-of-life context can be an adverse, even emotionally distressing experience for nurses. However, to the best of our knowledge, the experience of nurses working in palliative care in Switzerland has never been explored. The purpose of our study was, therefore, to understand and describe nurses' experience with the process of palliative sedation in line with the Swiss guidelines developed in 2005. We opted for an exploratory qualitative monocentric study using comprehensive individual interviews to achieve this objective. A total of 10 nurses were approached, and nine agreed to take part. After the interviews were transcribed, eight were ultimately included in the analysis. This analysis shows that nurses' attitudes toward the process of palliative sedation tended to be hesitant, resistant, or confident and that this was linked to the length of time they had worked in palliative care. These findings suggest that the 2005 Swiss guidelines do not protect nurses against the uncertainty related to process of palliative sedation. A national comprehensive multicentric study therefore needs to be developed to consolidate these results.
The Coronavirus disease 2019 (COVID-19) pandemic has led to a surge in need for alternative routes of administration of drugs for end of life and palliative care, particularly in community settings. Transmucosal routes include intranasal, buccal, sublingual and rectal. They are non-invasive routes for systemic drug delivery with the possibility of self-administration, or administration by family caregivers. In addition, their ability to offer rapid onset of action with reduced first-pass metabolism make them suitable for use in palliative and end-of-life care to provide fast relief of symptoms. This is particularly important in COVID-19, as patients can deteriorate rapidly. Despite the advantages, these routes of administration face challenges including a relatively small surface area for effective drug absorption, small volume of fluid for drug dissolution and the presence of a mucus barrier, thereby limiting the number of drugs that are suitable to be delivered through the transmucosal route. In this review, the merits, challenges and limitations of each of these transmucosal routes are discussed. The goals are to provide insights into using transmucosal drug delivery to bring about the best possible symptom management for patients at the end of life, and to inspire scientists to develop new delivery systems to provide effective symptom management for this group of patients.
De quoi et où meurent les Françaises et Français ? Quelle est l’offre sanitaire globale mais aussi plus spécifiquement de soins palliatifs aujourd’hui en France ? Quel est le profil des patients pris en charge dans les unités de soins palliatifs ? Quelle est la part des personnes âgées de 75 ans et plus dans les statistiques de mortalité ? Quelles sont leurs particularités ? Observe-t-on des différences géographiques concernant toutes ces données ?
Cette deuxième édition de l'Atlas national a vocation à répondre à ces multiples questions pour aider le lecteur à appréhender les enjeux et les réalités de l’accompagnement de la fin de vie et de la place des soins palliatifs en France aujourd’hui. Il rassemble des données démographiques, sanitaires qui sont analysées le plus finement possible pour mettre en lumière les spécificités départementales en termes d’offre sanitaire mais aussi de besoins des patients dans leurs trajectoires de fin de vie.
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.