Intentions at the End of Life: Continuous Deep Sedation and France's Claeys-Leonetti law.

In 2016, France passed a major law that is unique in giving terminally ill and suffering patients the right to the controversial procedure of continuous deep sedation until death (CDS). In so doing, the law identifies CDS as a sui generis clinical practice, distinct from other forms of palliative sedation therapy, as well as from euthanasia. As such, it reconfigures the ethical debate over CDS in interesting ways. This paper addresses one aspect of this reconfiguration and its implications for the intentions at work in this complex time at the end of life. The concept of intention is often considered central to the ethics of end-of-life care, but its role is recognized to be problematic, with charges of elusiveness and ambiguity. I aim to show that consideration of the French law affords a new understanding of the intentionality of CDS, and that in addition to the obvious importance of this for clarifying the ethics of the practice, it may suggest new ways of addressing the wider problem of ambiguous clinical intentions at end of life.

Experiences and perceptions of continuous deep sedation: An interview study among Dutch patients and relatives.

BACKGROUND: The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS. OBJECTIVE: To describe perceptions and experiences of patients and relatives with regard to CDS. This insight may help professionals and policymakers to better understand and respond to the evolving practice of CDS. METHODS: Qualitative interviews were held with patients and relatives who had either personal experience with CDS as a relative or had contemplated CDS for themselves. RESULTS: The vast majority of respondents appreciated CDS as a palliative care option, and none of the respondents reported (moral) objections to CDS. The majority of respondents prioritized avoiding suffering at the end of life. The patients and families generally considered CDS a palliative care option for which they can choose. Likewise, according to our respondents, the decision to start CDS was made by them, instead of the physician. Negative experiences with CDS care were mostly related to loss of sense of agency, due to insufficient communication or information provision by healthcare professionals. Lack of continuity of care was also a source of distress. We observed a variety in the respondents' understanding of the distinction between CDS and other end-of-life care decisions, including euthanasia. Some perceived CDS as hastening death. CONCLUSION: The traditional view of CDS as a last resort option for a physician to relieve a patient's suffering at the end of life is not explicit among patients and relatives. Instead, our results show that they perceive CDS as a regular palliative care option. Along with this normalization of CDS, patients and relatives claim a substantial say in the decision-making and are mainly motivated by a wish to avoid suffering and exercise control at the end of life. These distinct views on CDS of patients, their relatives and healthcare providers should be reconciled in guidelines and protocols for CDS. PATIENT OR PUBLIC CONTRIBUTION: One of the authors in our team (G. H.) has experience with CDS as a relative and ensured that the patient/relative viewpoint was adequately reflected in the design and conduct of our study. In the preliminary phase of our study, G. H. adjusted the topic list so it was better adapted to the current practice of CDS. During the data analysis, G. H. read several interviews and took part in the open and critical discussion on central themes and core concepts as an important member of the author team, thereby guaranteeing the central position of the patient/relative perspective in our final research outcome.

Family experience of palliative sedation therapy: proportional vs. continuous deep sedation.

PURPOSE: Some patients experience intense symptoms refractory to intensive palliative care, and palliative sedation is sometimes used. Palliative sedation may be classified into proportional and continuous deep sedation (CDS). The primary aim of this study was to compare family experience between families of patients who received proportional or CDS. METHODS: A multicenter questionnaire survey was conducted involving bereaved families of cancer patients who received proportional or CDS based on a sedation protocol. Overall evaluation of sedation (satisfaction, family-perceived distress, appropriateness of timing, and patient distress) and 13-item family concerns, good death, satisfaction with care, depression, quality of care, unfinished business, and balance between symptom relief and maintaining communication were measured. RESULTS: Among the 2120 patients who died, 222 patients received a continuous infusion of midazolam. A sedation protocol was used in 147 patients, and questionnaires were sent to 124 families. A total of 78 responses were finally returned (proportional, 58 vs. CDS, 20). There were no significant differences in the overall evaluation, family concerns, total score of good death, satisfaction, depression, or balance between symptom relief and maintaining communication. On the other hand, some quality of care items, i.e., relationship with medical staff (P < 0.01), physical care by nurses (P = 0.04), and coordination and consistency (P = 0.04), were significantly better in the CDS group than in the proportional sedation group. Family-reported unfinished business was also better in the CDS group, with marginal significance. CONCLUSIONS: Family experience of CDS was not less favorable than proportional sedation, and actually rated more favorably for some elements of quality of care and unfinished business.

The APSY-SED study: protocol of an observational, longitudinal, mixed methods and multicenter study exploring the psychological adjustment of relatives and healthcare providers of patients with cancer with continuous deep sedation until death.

BACKGROUND: Since 2016, France is the only country in the World where continuous deep sedation until death (CDSUD) is regulated by law. CDSUD serves as a response to refractory suffering in palliative situations where the patients' death is expected to occur in the following hours or days. Little is known on the psychological adjustment surrounding a CDSUD procedure for healthcare providers (HCPs) and relatives. Our study aims to gather qualitative and quantitative data on the specific processes behind the psychological adjustment of both relatives and HCPs, after the administration of CDSUD for patients with cancer. METHODS: The APSY-SED study is a prospective, longitudinal, mixed-methods and multicenter study. Recruitment will involve any French-speaking adult cancer patient for who a CDSUD is discussed, their relatives and HCPs. We plan to include 150 patients, 150 relatives, and 50 HCPs. The evaluation criteria of this research are: 1/ Primary criterion: Psychological adjustment of relatives and HCPs 6 and 13 months after the death of the patient with cancer (psychological adjustment = intensity of anxiety, depression and grief reactions, CDSUD-related distress, job satisfaction, Professional Stress and Professional experience). Secondary criteria: a)occurrence of wish for a CDSUD in patients in palliative phase; b)occurrence of wish for hastened death in patients in palliative phase; c)potential predictors of adjustment assessed after the discussion concerning CDSUD as an option and before the setting of the CDSUD; d) Thematic analysis and narrative account of meaning-making process concerning the grief experience. DISCUSSION: The APSY-SED study will be the first to investigate the psychological adjustment of HCPs and relatives in the context of a CDSUD procedure implemented according to French law. Gathering data on the grief process for relatives can help understand bereavement after CDSUD, and participate in the elaboration of specific tailored interventions to support HCPs and relatives. Empirical findings on CDSUD among patients with cancer in France could be compared with existing data in other countries and with results related to other medical fields where CDSUD is also conducted. TRIAL REGISTRATION: This protocol received the National Registration Number: ID-RCB2021-A03042-39 on 14/12/2021.

Association between continuous deep sedation and survival time in terminally ill cancer patients.

PURPOSE: Our study aimed to evaluate the association between CDS and survival time using the likelihood of receiving CDS to select a matched non-CDS group through an accurate measurement of survival time based on initiation of CDS. METHODS: A retrospective cohort study was performed using an electronic database to collect data regarding terminally ill cancer patients admitted to a specialized palliative care unit from January 2012 to December 2016. We first used a Cox proportional hazard model with receiving CDS as the outcome to identify individuals with the highest plausibility of receiving CDS among the non-CDS group (n = 663). We then performed a multiple regression analysis comparing the CDS group (n = 311) and weighted non-CDS group (n = 311), using initiation of CDS (actual for the CDS group; estimated for the non-CDS group) as the starting time-point for measuring survival time. RESULTS: Approximately 32% of participants received CDS. The most common indications were delirium or agitation (58.2%), intractable pain (28.9%), and dyspnea (10.6%). Final multiple regression analysis revealed that survival time was longer in the CDS group than in the non-CDS group (Exp(ß), 1.41; P < 0.001). Longer survival with CDS was more prominent in females, patients with renal dysfunction, and individuals with low C-reactive protein (CRP) or ferritin, compared with their counterpart subgroup. CONCLUSIONS: CDS was not associated with shortened survival; instead, it was associated with longer survival in our terminally ill cancer patients. Further studies in other populations are required to confirm or refute these findings.

A qualitative study on continuous deep sedation until death as an alternative to assisted suicide in Switzerland.

BACKGROUND: According to the European Association for Palliative Care, decisions regarding palliative sedation should not be made in response to requests for assisted dying, such as euthanasia or assisted suicide. However, several studies show that continuous deep sedation until death (CDSUD) - a particular form of sedation - has been considered as an alternative to these practices in some countries. In Switzerland, where assisted suicide is decriminalized and CDSUD is not legally regulated, no studies have comprehensively investigated their relation. Our study aimed to identify and describe the experience among palliative care physicians of CDSUD as a potential alternative to assisted suicide in the French-speaking part of Switzerland. METHODS: We performed an exploratory multicentre qualitative study based on interviews with palliative care physicians in the French-speaking part of Switzerland and conducted linguistic and thematic analysis of all interview transcripts. The study is described in accordance with COREQ guidelines. RESULTS: We included 10 interviews conducted in four palliative care units. Our linguistic analysis shows four main types of sedation, which we called 'rapid CDSUD', 'gradual CDSUD', 'temporary sedation' and 'intermittent sedation'. CDSUD (rapid or gradual) was not considered an alternative to assisted suicide, even if a single situation has been reported. In contrast, 'temporary' or 'intermittent sedation', although not medically indicated, was sometimes introduced in response to a request for assisted suicide. This was the fact when there were barriers to an assisted suicide at home (e.g., when transfer home was impossible or the patient wished not to burden the family). CONCLUSION: These preliminary results can guide clinical, ethical, linguistic and legal reflection in this field and be used to explore this question more deeply at the national and international levels in a comparative, interdisciplinary and multiprofessional approach. They can also be useful to update Swiss clinical guidelines on palliative sedation in order to include specific frameworks on various sedation protocols and sedation as an alternative to assisted suicide. Potential negative impacts of considering palliative sedation as an alternative to assisted suicide should be nuanced by open and honest societal debate.

Attitudes toward withholding antibiotics from people with dementia lacking decisional capacity: findings from a survey of Canadian stakeholders.

BACKGROUND: Healthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity. METHODS: We conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens, family caregivers, nurses and physicians; response rate 49.4%) to (1) assess their attitudes toward withholding antibiotics from people with dementia lacking decisional capacity; (2) compare attitudes between dementia stages and stakeholder groups; and (3) investigate other correlates of attitudes, including support for continuous deep sedation (CDS) and medical assistance in dying (MAID). The vignettes feature a woman moving along the dementia trajectory, who has refused in writing all life-prolonging interventions and explicitly requested that a doctor end her life when she no longer recognizes her loved ones. Two stages were considered after she had lost capacity: the advanced stage, where she likely has several more years to live, and the terminal stage, where she is close to death. RESULTS: Support for withholding antibiotics ranged from 75% among seniors and caregivers at the advanced stage, to 98% among physicians at the terminal stage. Using the generalized estimating equation approach, we found stakeholder group, religiosity, and support for CDS and MAID, to be associated with attitudes toward antibiotics. CONCLUSIONS: Findings underscore the importance for healthcare professionals of discussing underlying values and treatment goals with people at an early stage of dementia and their relatives, to help them anticipate future care decisions and better prepare surrogates for their role. Findings also have implications for the scope of MAID laws, in particular in Canada where the extension of MAID to persons lacking decisional capacity is currently being considered.

Control Measures for Continuous Deep Sedation Until Death: A Framing Analysis of the Views of Physicians.

Physicians have been subject to increasing external control to improve their medical practice, and scholars have theorized extensively about their opposition to such control. However, little empirical attention has been paid to the views and reasoning that lie behind this opposition. An in-depth understanding is necessary for enhancing the effectiveness and efficiency of external controls, and continuous deep sedation until death (CDS) is an interesting case in this regard. This study aims to explore how physicians frame control measures for CDS. We conducted 47 semi-structured interviews with Belgian physicians in 2019. A qualitative framing analysis was performed to analyze their views and reasoning. This study reveals that physicians approach CDS practice and control measures with different emphases. Controlling by mechanisms of professional self-regulation and state governance are put forward as appropriate means to improve CDS practice. Policymakers should take into consideration physicians' frames to develop sound control measures.

Continuous deep sedation and the doctrine of double effect: Do physicians not intend to make the patient unconscious until death if they gradually increase the sedatives?

Continuous deep sedation (CDS) has the effect of making the patient unconscious until death, and that it has this effect is clearly an undesirable aspect of CDS. However, some authors have recently maintained that many physicians do not intend this effect when practicing CDS. According to these authors, CDS is differentiated into two types; in what is called "gradual" CDS (or CDS as a result of proportionate palliative sedation), physicians start with low doses of sedatives and increase them only gradually, whereas in "rapid" CDS (or palliative sedation to unconsciousness), physicians rapidly administer a heavy dose that clearly induces unconsciousness from the beginning. The claim is that the physicians intend permanent unconsciousness only if they rapidly administer a heavy dose, but they do not intend it when the unconsciousness is the result of a gradual increase of sedatives. This paper attempts to refute these claims based on a close examination of the protocol of gradual CDS. If my argument is valid, the doctrine of double effect would not be useful in justifying most, if not all, cases of CDS.

Refractory psycho-existential distress and continuous deep sedation until death in palliative care: The French perspective.

OBJECTIVE: Since February 2016, French Claeys-Leonetti law has recognized patients' right to confront incurable diseases with short-term prognosis and refractory physical or psychological or existential symptoms by requesting continuous deep sedation until death (CDSUD). Determining when psychological or existential distress is refractory and unbearable remains complex and controversial.This review provides a comprehensive thought on CDSUD for advanced incurable patients with refractory psychological and/or existential distress in palliative care settings. It offers guidance on psychiatric or psychological diagnosis for explaining patients' requests for CDSUD. METHOD: A narrative literature review (2000-2019) was conducted on the MedLine search about the use of palliative sedation in cases of refractory psychological and/or existential distress. RESULTS: (1) Definitions of "refractory symptom," "refractory psychological distress," and "refractory existential distress" are inconsistent; (2) alternative diagnoses might obscure or be obscured by psycho-existential distress; and (3) criteria on meanings, reasons for requests, decision-making processes, and functions are evolving in practice. SIGNIFICANCE OF RESULTS: Before implementing CDSUD, palliative healthcare professionals should seek input from psycho-oncologists in palliative care. Mental health professionals should analyze and assess the reasons for psychological and/or existential distress, consider the intentionality processes of requests, and explore alternative diagnoses, such as depressive or adjustment disorders, demoralization syndrome, desire to hasten death, and desire for euthanasia. Therapeutic responses (e.g., pharmacological and psychotherapeutic) should be implemented before deciding that psycho-existential distress is refractory.

Changes in opinions on palliative sedation of palliative care specialists over 16 years and their effects on clinical practice.

PURPOSES: Despite extensive debate on palliative sedation over the last few decades, no studies have explored longitudinal changes in physicians' opinion. Moreover, little is known about how physicians' opinions affect their practice. This study aimed to clarify (1) changes in palliative care specialists' opinions on palliative sedation and (2) the effects of these opinions on clinical practice. METHODS: In 2000 and 2016, nationwide questionnaire surveys involving Japanese palliative care specialists were performed: measurement was based on agreement with opinions on palliative sedation. In 2016, the physicians reported their practice of continuous deep sedation (CDS) and answered their thoughts on what factors lead to a good death as factors potentially affecting their practice. RESULTS: Of the 695 physicians enrolled in the 2016 survey, 469 responded (67%) and 417 were analyzed (60%). Compared with 54 physicians in 2000, the present respondents were more likely to consider palliative sedation is difficult to perform based on appropriate indications (ES = 0.84, P < 0.001), is unnecessary if conventional palliative care is performed sufficiently (ES = 0.30, P = 0.013), and may result in legal action (ES = 0.35, P = 0.003). The physicians' opinions more strongly affected their practice than their characteristics or thoughts on good death components. CONCLUSIONS: Recently, palliative care specialists in Japan tend to encounter more difficulties determining what conventional palliative care is and what palliative sedation is. They also fear legal ramifications. It is necessary to standardize methods of alleviating patients' suffering, to make CDS criteria clearer, and to create a legal basis that respects patients' rights at their end of life.

Controversies surrounding continuous deep sedation at the end of life: the parliamentary and societal debates in France.

BACKGROUND: Continuous deep sedation at the end of life is a practice that has been the topic of considerable ethical debate, for example surrounding its perceived similarity or dissimilarity with physician-assisted dying. The practice is generally considered to be legal as a form of symptom control, although this is mostly only assumed. France has passed an amendment to the Public Health Act that would grant certain terminally ill patients an explicit right to continuous deep sedation until they pass away. Such a framework would be unique in the world. DISCUSSION: In this paper we will highlight and reflect on four relevant aspects and shortcomings of the proposed bill. First, that the bill suggests that continuous deeps sedation should be considered as a sui generis practice. Second, that it requires that sedation should always be accompanied by the withholding of all artificial nutrition and hydration. In the most recently amended version of the legal proposal it is stated that life sustaining treatments are withheld unless the patient objects. Third, that the French bill would not require that the suffering for which continuous deep sedation is initiated is unbearable. Fourth, the question as to whether the proposal should be considered as a way to avoid having to decriminalise euthanasia and/or PAS or, on the contrary, as a veiled way to decriminalise these practices. The French proposal to amend the Public Health Act to include a right to continuous deep sedation for some patients is a unique opportunity to clarify the legality of continuous deep sedation as an end-of-life practice. Moreover, it would recognize that the practice of continuous deep sedation raises ethical and legal issues that are different from those raised by symptom control on the one hand and assisted dying on the other hand. Nevertheless, there are still various issues of significant ethical concern in the French legislative proposal.

Continuous deep sedation and homicide: an unsolved problem in law and professional morality.

When a severely suffering dying patient is deeply sedated, and this sedated condition is meant to continue until his death, the doctor involved often decides to abstain from artificially administering fluids. For this dual procedure almost all guidelines require that the patient should not have a life expectancy beyond a stipulated maximum of days (4-14). The reason obviously is that in case of a longer life-expectancy the patient may die from dehydration rather than from his lethal illness. But no guideline tells us how we should describe the dual procedure in case of a longer life-expectancy. Many arguments have been advanced why we should not consider it to be a form of homicide, that is, ending the life of the patient (with or without his request). I argue that none of these arguments, taken separately or jointly, is persuasive. When a commission, even one that is not itself life-shortening, foreseeably renders a person unable to undo the life-shortening effects of another, simultaneous omission, the commission and the omission together should be acknowledged to kill her. I discuss the legal and ethical implications of this conclusion.

Physician-reported practices on continuous deep sedation until death: A descriptive and comparative study.

BACKGROUND: Research on continuous deep sedation until death has focused on estimating prevalence and describing clinical practice across care settings. However, evidence on sedation practices by physician specialty is scarce. AIMS: To compare and contrast physician-reported practices on continuous deep sedation until death between general practitioners and medical specialists. DESIGN/PARTICIPANTS: A secondary analysis drawing upon data from a large-scale, population-based, retrospective survey among physicians in Flanders, Belgium in 2007. Symptom prevalence and characteristics of sedation (drugs used, artificial nutrition and hydration administered, intentions, and decision-making) were measured. RESULTS: Response rate was 58.4%. The frequency of continuous deep sedation until death among all deaths was 11.3% for general practitioners and 18.4% for medical specialists. General practitioners reported significantly higher rates of severity and mean intensity of pain, delirium, dyspnea, and nausea in the last 24 h of life for sedated patients and a higher number of severe symptoms than medical specialists. No differences were found between groups in the drugs used, except in propofol, reported only by medical specialists (in 15.8% of all cases). Artificial nutrition and hydration was withheld or withdrawn in 97.2% of general practitioner and 36.2% of medical specialist cases. Explicit life-shortening intentions were reported by both groups (for 3%-4% of all cases). Continuous deep sedation until death was initiated without consent or request of either the patient or the family in 27.9% (medical specialists) and 4.7% (general practitioners) of the cases reported. CONCLUSION: Considerable variation, often largely deviating from professional guidelines, was observed in physician-reported performance and decision-making, highlighting the importance of providing clearer guidance on the specific needs of the context in which continuous deep sedation until death is to be performed.

Continuous Deep Sedation Until Death of Children at the End of Life: French Physicians' Opinions.

Objectives: To evaluate physicians' opinions concerning continuous deep sedation until death (CDSUD) and implementation of Claeys-Leonetti; a law intended to be applicable to all patients, but without a specific framework for children thus giving rise to ethically and legally complex situations. The secondary objective was to identify if physicians' characteristics could influence their opinions. Study Design: This was a national, multicenter, noninterventional cross-sectional survey from January 30, 2020, until March 1, 2020. The target population consisted of French physicians involved in children's end-of-life situations. The validated questionnaire explored respondents' characteristics and their opinions on four hypothetical pediatric clinical cases. Results: Analysis was conducted on 391 respondents. The oncological situation was more easily recognized as end of life compared with the neurological pathology (77% vs. 40.4%). Dependence on mechanical ventilation was another major factor influencing physicians in identifying end-of-life situations. Physicians clearly recognized the difference in intention between CDSUD and euthanasia. They accepted to implement CDSUD more easily in newborns. The withdrawal of artificial nutrition and hydration gave rise to divergent opinions. Respondents were in favor of adolescents' decision-making autonomy and their access to drafting advance directives. The child's best interest prevailed in case of objection by parents, except in situations outside the law's framework or in cases of disagreement within the health care team. Conclusion: Results of our study showed differences in the interpretation of the law concerning the CDSUD application framework and provide elements for reflection, which may ultimately contribute to the development of specific guidelines in CDSUD in children at the end of life.

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.

Should continuous deep sedation until death be legally regulated in Switzerland? An exploratory study with palliative care physicians.

Background: In Switzerland, continuous deep sedation until death (CDSUD) is not legally regulated and the current clinical practice guidelines on palliative sedation from 2005 do not refer to it. In contrast, in France, a neighbouring country, CDSUD is regulated by a specific law and professional guidelines. International studies show that in culturally polymorphic countries, there are variations in the end-of-life practices between linguistic regions and that a linguistic region shares many cultural characteristics with the neighbouring country. Objectives: This study aimed to explore the attitudes of palliative care physicians from the French-speaking part of Switzerland on the question of whether CDSUD should be legally regulated in the country, and to identify their arguments. Our study also aimed to assess whether a hypothetical Swiss law on CDSUD should be similar to the current legal regulation of this practice in France. Design: We conducted a multicentre exploratory qualitative study based on face-to-face interviews with palliative care physicians in the French-speaking part of Switzerland. Methods: We analysed the interview transcripts using thematic analysis, combining deductive and inductive coding. Results: Most of the participants were opposed to having specific legal regulation of CDSUD in Switzerland. Their arguments were diverse: some focused on medical and epistemological aspects of CDSUD, whereas others emphasized the legal inconvenience of having such regulation. None had the opinion that, if CDSUD were legally regulated in Switzerland, the regulation should be similar to that in France. Conclusion: This study allows to better understand why palliative care physicians in French-speaking Switzerland may be reluctant to have legal regulation of CDSUD. Further studies covering the whole country would be needed to gain a more complete picture of Swiss palliative care physicians on this question.

Continuous Deep Sedation for Psycho-Existential Suffering: A Multicenter Nationwide Study.

Background: There is ongoing debate on whether continuous deep sedation (CDS) for psycho-existential suffering is appropriate. Objective: We aimed to (1) clarify clinical practice of CDS for psycho-existential suffering and (2) assess its impact on patients' survival. Methods: Advanced cancer patients admitted to 23 palliative care units in 2017 were consecutively enrolled. We compared patients' characteristics, CDS practices, and survival between those receiving CDS for psycho-existential suffering ± physical symptoms and only for physical symptoms. Results: Of 164 patients analyzed, 14 (8.5%) received CDS for psycho-existential suffering ± physical symptoms and only one of them (0.6%) solely for psycho-existential suffering. Patients receiving CDS for psycho-existential suffering, compared with those only for physical symptoms, were likely to have no specific religion (p = 0.025), and desired (78.6% vs. 22.0%, respectively; p < 0.001) and requested a hastened death more frequently (57.1% vs. 10.0%, respectively; p < 0.001). All of them had a poor physical condition with limited estimated survival, and mostly (71%) received intermittent sedation before CDS. CDS for psycho-existential suffering caused greater physicians' discomfort (p = 0.037), and lasted for longer (p = 0.029). Dependency, loss of autonomy, and hopelessness were common reasons for psycho-existential suffering that required CDS. The survival time after CDS initiation was longer in patients receiving it for psycho-existential suffering (log-rank, p = 0.021). Conclusion: CDS was applied to patients who suffered from psycho-existential suffering, which often associated with desire or request for a hastened death. Further studies and debate are warranted to develop feasible treatment strategies for psycho-existential suffering.

Physicians' Experiences and Perceptions of Environmental Factors Affecting Their Practices of Continuous Deep Sedation until Death: A Secondary Qualitative Analysis of an Interview Study.

As previous research has paid little attention to environmental factors affecting the practice of continuous deep sedation until death (CDS), we aimed to explore these using physicians' experiences and perceptions. We performed an interpretative thematic analysis of primary data from a qualitative interview study conducted from February to May 2019 in Belgium with 47 physicians. Structural factors were identified: the lack of professional and/or technical support in monitoring sedated patients; the use of guidelines in team contexts; the time constraints for treating individual patients and work pressure; the structural knowledge gap in medical education; the legal context for assisted dying; and the lack of a clear legal context for CDS. Cultural factors were identified: the moral reservations of care teams and/or institutions towards CDS; the presence of a palliative care culture within care teams and institutions; the culture of fear of making clinical errors regarding CDS among a group of physicians; the professional stigma of performing assisted dying among some of the physician population; the different understandings of CDS in medical and policy fields; and the societal taboo around suffering at the end of life and natural death. To conclude, improving CDS practice requires a whole-system approach considering environmental factors.

Continuous Deep Sedation Until Death: First National Survey in France after the 2016 Law Promulgating It.

CONTEXT: The French parliament passed a groundbreaking law in 2016, opening a right for patients to access continuous and deep sedation until death (CDS) at the end of life, under conditions. Parliamentarians' goal was to consolidate patients' rights whilst avoiding legislating on medical aid in dying. OBJECTIVES: To conduct a first national retrospective survey on CDS to evaluate the number of CDS requested, proposed and performed in 2017 and to elicit qualitative data from physicians on the practice and on the terms used by patients to refer to CDS. METHODS: Early 2018, an online survey was sent to all French hospitals, nursing homes, hospital at homes services and general practitioners (GPs). Descriptive statistics and qualitative inductive content analysis were used to analyze the data and comments of respondents. RESULTS: The qualitative data show that respondents generally approve the law on CDS as it sets a legal framework; nonetheless, there is a persistent controversy about CDS vs. euthanasia for some physicians in all settings. GPs reported limited access to midazolam and the difficulty in organizing multidisciplinary procedures as major constraints. In hospital settings in particular, differentiating CDS from other sedation practices is uneasy. All physicians reported patients use multiple elements of language to request CDS. CONCLUSION: After the law was passed in France, CDS were requested, proposed and performed in all medical settings, in nursing homes, at home. The qualitative data presented here show the relevance of exploring physicians' reflexive stances on this practice in different settings and within the context of a patient-physician relationship marked by a new patient's right. The study highlights the wide range of elements of language used by patients at the end of life, as understood by respondent physicians to mean a request for CDS and underscores the polymorphous meaning of CDS.