« Sédation ¼ ou « pratiques sédatives à visée palliative en fin de vie ¼ ? Une étude linguistique des recommandations francophones en matière de sédation en soins palliatifs chez l'adulte.

Introduction : Despite the number and importance of French-language guidelines related to palliative sedation for adults, these texts have never been the subject of a linguistic analysis.Objectives : This study aimed to explore and analyze the terms used for sedation and their definitions in Belgian, French, Quebec, and Swiss guidelines.Methods : Current documents were subjected to textual, terminological, and conceptual analysis.Results : Belgian, Quebec, and Swiss guidelines use the same term to refer to sedation, without, however, conceptualizing it in a consistent way. By contrast, guidelines developed in France use various terms but define sedation in a similar (but not identical) way. Cultural specificities linked to end-of-life legislation in those countries and region were identified as a potential causal factor.Discussion and conclusion : The diversity of terms and definitions inevitably reinforces the imprecision of the medical language, and the terminology in particular. This is likely to have a negative impact on communication between healthcare professionals, patients, and their families. Efforts should be made to homogenize the terminology and definitions used in guidelines.

[Clinical ethics and uncertainty: an inseparable duo for the benefit of the patient]. / Éthique clinique et incertitude : un indissociable duo au bénéfice du patient.

Clinical ethics can be conceived as thought marked by uncertainty and on uncertainty. Its difficulties must be highlighted and discussed, in order to help guide the actions of caregivers, both on a scientific and human level, for the benefit of the patient. As an intellectual and moral virtue, humility is likely to favour a high standard of reflection and action.

High concentration of topical amitriptyline for treating chemotherapy-induced neuropathies.

PURPOSE: Chemotherapy-induced peripheral neuropathy (CIPN) is a devastating pain condition of cancer therapy that may force chemotherapy dose reduction or discontinuation. Since treatment options for CIPN are quite limited, we investigated the effect of 10% amitriptyline cream on neuropathic pain. PATIENTS AND METHODS: This pilot study enrolled patients with hematological or solid tumors presenting hands and feet CIPN (for less than 1 month without previous treatment for CIPN [Group 1]; for more than 1 month with previous treatment [Group 2]). Patients applied 10% amitriptyline cream twice a day. Pain intensity was evaluated at 1, 2, and 4 weeks then monthly up to 1 year. The primary endpoint was change from baseline to 4-week treatment in median pain score assessed by visual analogue scale (VAS). RESULTS: Overall, 44 patients were enrolled. Median (range) age was 67 (46-80) years, 34% were female. The majority (88.6%) had hematological malignancies, and the most commonly used chemotherapeutic agents were bortezomib and oxaliplatin. The median (range) VAS pain score decreased from 7 (4-9) at baseline to 2 (0-4) after 4-week topical treatment. No difference was seen between Group 1 and Group 2. Reduced initial chemotherapy doses in 11 patients as well as chemotherapy discontinued in 5 patients at baseline were resumed after treatment with 10% amitriptyline cream. CONCLUSION: Considering the limited efficacy of conventional systemic treatments in CIPN and their safety profile, 10% topical amitriptyline appears to be a good candidate for first-line CIPN therapy, allowing continuation of chemotherapy at effective doses. The results are worth to be confirmed in a placebo-controlled clinical trial.

Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU.

BACKGROUND: Our study aimed to evaluate the prevalence and predictive factors of withholding life support for children suffering from severe neurological impairment before admission to the pediatric intensive care unit (PICU). METHOD: Children under 18 years of age with severe neurological impairment, who were hospitalized between January 2006 and December 2016, were included in this retrospective study. They were allocated to a withholding group or a control group, depending on whether life support was withheld or not, before admission to the PICU. RESULTS: Overall, 119 patients were included. At admission to the PICU, the rate of withholding life support was 10 % (n = 12). Predictive factors were: (1) a previous stay in the PICU (n = 11; 92 %, p<0.01, odds ratio [OR]: 14 [2-635], p = 0.001); (2) the need for respiratory support (n = 5; 42 %, p = 0.01, OR: 6 [1-27], p = 0.01); (3) the need for feeding support (n = 10; 83 %, p = 0.01, OR: 10 [2-100], p = 0.001); and (4) a higher functional status score (FSS: 16 [12.5-19] vs. 10 [8-13], p<0.01). CONCLUSION: The withholding of life support for children suffering from severe neurological impairment appeared limited in our pediatric department. The main predictor was at least one admission to the PICU, which raised the question of the pediatrician's role in the decision to withhold life support.

Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams.

CONTEXT: Palliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently encountered and can pose several clinical and ethical challenges for health care teams and families. OBJECTIVES: Our study aimed to describe CDS requests and practices of patients receiving specialized pediatric palliative care in France since its legalization in 2016. METHODS: We conducted a nationwide multicentric, descriptive, retrospective study using a self-report questionnaire completed by all Pediatric Palliative Care (PPC) Teams that were involved in a CDS case between January 2017 and December 2019. RESULTS: Six PPC teams had cared for six patients that had requested CDS, predominantly male adolescents/young adults diagnosed with a solid tumour. The refractory symptoms were diverse (pain, bleeding, and sensory loss) and always coupled with psycho-existential suffering. Each request was analyzed in multidisciplinary collegial meetings. Parental consent was always obtained regardless of age. Sedation typically required the use of multiple drugs including Midazolam (n = 5 cases), Chlorpromazine (n = 3), Ketamine (n = 2), and Propofol (n = 2). Despite close monitoring, achieving a satisfactory level of deep sedation was challenging and most patients unexpectedly awoke during CDS. Death occurred between 27 and 96 hours after induction. CONCLUSION: Managing patient-requested CDS in pediatrics is challenging due to its rarity, multi-factorial refractory symptoms and drug tolerance despite polytherapy. Few recommendations exist to guide CDS practice for pediatricians. Further studies investigating pediatric CDS practices across various cultural and legal settings, refractory symptom management and specific pharmacology are warranted.

[Current status of clinical practice guidelines on palliative sedation for adults in French-speaking countries]. / État des lieux des recommandations sur la sédation palliative chez l'adulte dans les pays francophones.

INTRODUCTION: Many clinical practice guidelines on palliative sedation have been developed. To date, studies on French-language guidelines are lacking, despite the specific and potentially influential end-of-life positions taken by some French-speaking countries. This study aimed to perform a systematic review of the guidelines related to palliative sedation for adults in French-speaking countries, taking a synchronic and diachronic approach (current and former guidelines). METHODS: Guidelines published in French since 2000 were searched for multiple databases. In addition, prominent palliative care experts in French-speaking countries were contacted individually. A content analysis of all guidelines was conducted. RESULTS: A total of 21 guidelines from 18 countries were identified. Among them, at the time of the data collection, 14 guidelines were effectively compiled in four countries or provinces: Belgium, France, Canada (Quebec) and Switzerland. No guidelines were found for African countries. The recommendations analyzed were very heterogeneous in form (simple proposals or formal guidelines) and in substance (i.e. different types of sedation). DISCUSSION AND CONCLUSION: The quantity and volume of the guidelines found and the heterogeneity of the terminology prevented a detailed analysis of the content of the texts. An analysis must be performed using a synchronic approach only and focusing on a specific element of one type of sedation.

Palliative Care in SMA Type 1: A Prospective Multicenter French Study Based on Parents' Reports.

Spinal muscular atrophy type 1 (SMA-1) is a severe neurodegenerative disorder, which in the absence of curative treatment, leads to death before 1 year of age in most cases. Caring for these short-lived and severely impaired infants requires palliative management. New drugs (nusinersen) have recently been developed that may modify SMA-1 natural history and thus raise ethical concerns about the appropriate level of care for patients. The national Hospital Clinical Research Program (PHRC) called "Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA-1)" was a multicenter prospective study conducted in France between 2012 and 2016 to report palliative practices in SMA-1 in real life through prospective caregivers' reports about their infants' management. Thirty-nine patients were included in the prospective PHRC (17 centers). We also studied retrospective data regarding management of 43 other SMA-1 patients (18 centers) over the same period, including seven treated with nusinersen, in comparison with historical data from 222 patients previously published over two periods of 10 years (1989-2009). In the latest period studied, median age at diagnosis was 3 months [0.6-10.4]. Seventy-seven patients died at a median 6 months of age[1-27]: 32% at home and 8% in an intensive care unit. Eighty-five percent of patients received enteral nutrition, some through a gastrostomy (6%). Sixteen percent had a non-invasive ventilation (NIV). Seventy-seven percent received sedative treatment at the time of death. Over time, palliative management occurred more frequently at home with increased levels of technical supportive care (enteral nutrition, oxygenotherapy, and analgesic and sedative treatments). No statistical difference was found between the prospective and retrospective patients for the last period. However, significant differences were found between patients treated with nusinersen vs. those untreated. Our data confirm that palliative care is essential in management of SMA-1 patients and that parents are extensively involved in everyday patient care. Our data suggest that nusinersen treatment was accompanied by significantly more invasive supportive care, indicating that a re-examination of standard clinical practices should explicitly consider what treatment pathways are in infants' and caregivers' best interest. This study was registered on clinicaltrials.gov under the reference NCT01862042 (https://clinicaltrials.gov/ct2/show/study/NCT01862042?cond=SMA1&rank=8).

Eligibility of patients withheld or withdrawn from life-sustaining treatment to organ donation after circulatory arrest death: epidemiological feasibility study in a French Intensive Care Unit.

BACKGROUND: Transplantation brings sustainably improved quality of life to patients with end-stage organ failure. Persisting shortfall in available organs prompted French authorities and practitioners to focus on organ retrieval in patients withdrawn from life-sustaining treatment and awaiting cardiac arrest (Maastricht classification category III). The purpose of this study was to assess the theoretical eligibility of non-heart-beating donors dying in the intensive care unit (ICU) after a decision to withhold or withdraw life-sustaining treatment (WoWt). METHODS: We collected the clinical and biological characteristics of all consecutive patients admitted to our ICU and qualified for a WoWt procedure under the terms of the French Leonetti law governing end-of-life care during a 12-month period. The theoretical organ donor eligibility (for kidney, liver, or lung retrieval) of deceased patients was determined a posteriori 1) according to routine medical criteria for graft selection and 2) according to the WoWt measures implemented and their impact on organ viability. RESULTS: A total of 596 patients (mean age: 67 ± 16 yr; gender ratio M/F: 1.6; mean SAPS (Simplified Acute Physiology Score) II: 54 ± 24) was admitted to the ICU, of which 84 patients (mean age: 71 ± 14 yr, 14% of admissions, gender ratio M/F: 3.2) underwent WoWt measures. Eight patients left the unit alive. Forty-four patients presented a contraindication ruling out organ retrieval either preexisting admission (n = 20) or emerged during hospitalization (n = 24). Thirty-two patients would have been eligible as kidney (n = 23), liver (n = 22), or lung donors (n = 2). Cardiopulmonary support was withdrawn in only five of these patients, and three died within 120 minutes after withdrawal (the maximum delay compatible with organ viability for donor grafts). CONCLUSIONS: In this pilot study, a significant number of patients deceased under WoWt conditions theoretically would have been eligible for organ retrieval. However, the WoWt measures implemented in our unit seems incompatible with donor organ viability. A French multicenter survey of end-of-life practices in ICU may help to identify potential appropriate organ donors and to interpret nation-specific considerations of the related professional, legal, and ethical frameworks.