The impact of the euthanasia assessment procedure: a qualitative interview study among adults with psychiatric conditions.

BACKGROUND: Assisted dying for adults with psychiatric conditions (APC) is highly controversial but legally possible in a few countries, including Belgium. Previous research has suggested that the complex euthanasia assessment procedure may cause additional suffering in APC but may also induce positive experiences. This study reports on the impact of the euthanasia assessment procedure as experienced by APC on three counts: 1) their mental state, including death ideation; 2) their treatment trajectory; 3) their social relationships. METHODS: We performed an in-depth qualitative interview study with 16 APC in Flanders, Belgium, who had voiced a euthanasia request between 2016-2020. Thematic coding was used. FINDINGS: We interviewed 16 APC. Euthanasia assessment procedures brought out a plethora of experiences in APC, both favourable and unfavourable. Whereas thoughts of suicide remain present to a certain extent, being in the assessment procedure allows some APC to reconsider alternatives towards life, and also to attempt new treatment options. However, many APC experience ambivalence about the supposedly inherent desirability and dignity in euthanasia. Worries also surfaced about the rationale behind and effects of involvement of APCs' social circle, and about the impact it could have on them. CONCLUSION: Further research, including other stakeholder perspectives, is recommended with a view to maximising favourable and minimising unfavourable impacts for all involved. In clinical practice attention to these impacts is paramount, and clear communication and management of expectations between physician and patient, seems appropriate to address the many ambivalent experiences that accompany APC during the euthanasia assessment procedure. Policy attention could in this regard go to clarifying certain sources of ambivalence and issues that are insufficiently addressed, such as modalities of relatives' involvement.

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.

The engagement of psychiatrists in the assessment of euthanasia requests from psychiatric patients in Belgium: a survey study.

BACKGROUND: Since its legalisation in 2002, the number of times euthanasia has been carried out in response to requests from adults with psychiatric conditions (APC) has continued to increase. However, little is known about why and how psychiatrists become engaged in the assessment of such euthanasia requests. METHODS: A cross-sectional survey study was conducted between November 2018 and April 2019 of 499 psychiatrists affiliated with the Flemish Psychiatry Association. Chi square/Fisher's exact tests were performed to examine if, and to what extent, psychiatrists' backgrounds relate to their concrete experiences. The answers to the open question regarding motives for (non-) engagement were thematically coded. RESULTS: Two hundred one psychiatrists participated, a response rate of 40%. During their careers, 80% of those responding have been confronted with at least one euthanasia request from an APC patient and 73% have become involved in the assessment procedure. Their engagement was limited to the roles of: referring physician (in 44% of the psychiatrists), attending physician (30%), legally required 'advising physician' (22%), and physician participating in the actual administration of the lethal drugs (5%). Within the most recent 12 months of practice, 61% of the respondents have been actively engaged in a euthanasia assessment procedure and 9% have refused at least once to be actively engaged due to their own conscientious objections and/or the complexity of the assessment. The main motive for psychiatrists to engage in euthanasia is the patient's fundamental right in Belgian law to ask for euthanasia and the psychiatrist's duty to respect that. The perception that they were sufficiently competent to engage in a euthanasia procedure was greater in psychiatrists who have already had concrete experience in the procedure. CONCLUSIONS: Although the majority of psychiatrists have been confronted with euthanasia requests from their APC patients, their engagement is often limited to referring the request to a colleague physician for further assessment. More research is needed to identify the determinants of a psychiatrist's engagement in euthanasia for their APC patients and to discover the consequences of their non-, or their restricted or full engagement, on both the psychotherapeutic relationship and the course of the euthanasia request.

Belgian psychiatrists' attitudes towards, and readiness to engage in, euthanasia assessment procedures with adults with psychiatric conditions: a survey.

BACKGROUND: Although the Belgian assessment pathway for legal euthanasia requires the engagement of at least one psychiatrist, little is known about psychiatrists' attitudes towards euthanasia for adults with psychiatric conditions (APC). This study aims to gauge psychiatrists' attitudes towards and readiness to engage in euthanasia assessment and/or performance procedures in APC. METHODS: This cross-sectional survey study was performed between November 2018 and April 2019. The survey was sent to a sample of 499 eligible psychiatrists affiliated to the Flemish Association for Psychiatry, a professional association that aims to unite and represent all psychiatrists working in Flanders, the Dutch-speaking, northern part of Belgium. The Association's members comprise an estimated 80-90% of all psychiatrists active in Flanders. Only psychiatrists working with APC (83% of the association's total membership) were included. Factorial Anova and Chi Square tests were performed to examine if and to what extent psychiatrists' backgrounds were associated with, respectively, their attitudes and their readiness to play a role in euthanasia procedures concerning APC. RESULTS: One hundred eighty-four psychiatrists completed the questionnaire (response rate 40.2%); 74.5% agree that euthanasia should remain permissible for APC. However, 68.9% question some of the approaches taken by other physicians during the euthanasia assessment and only half consider euthanasia assessment procedures compatible with the psychiatric care relationship. Where active engagement is concerned, an informal referral (68%) or preliminary advisory role (43.8%) is preferred to a formal role as a legally required advising physician (30.3%), let alone as performing physician (< 10%). CONCLUSION: Although three quarters agree with maintaining the legal option of euthanasia for APC, their readiness to take a formal role in euthanasia procedures appears to be limited. More insight is required into the barriers preventing engagement and what psychiatrists need, be it education or clarification of the legal requirements, to ensure that patients can have their euthanasia requests assessed adequately.

Using continuous sedation until death for cancer patients: a qualitative interview study of physicians' and nurses' practice in three European countries.

BACKGROUND: Extensive debate surrounds the practice of continuous sedation until death to control refractory symptoms in terminal cancer care. We examined reported practice of United Kingdom, Belgian and Dutch physicians and nurses. METHODS: Qualitative case studies using interviews. SETTING: Hospitals, the domestic home and hospices or palliative care units. PARTICIPANTS: In all, 57 Physicians and 73 nurses involved in the care of 84 cancer patients. RESULTS: UK respondents reported a continuum of practice from the provision of low doses of sedatives to control terminal restlessness to rarely encountered deep sedation. In contrast, Belgian respondents predominantly described the use of deep sedation, emphasizing the importance of responding to the patient's request. Dutch respondents emphasized making an official medical decision informed by the patient's wish and establishing that a refractory symptom was present. Respondents employed rationales that showed different stances towards four key issues: the preservation of consciousness, concerns about the potential hastening of death, whether they perceived continuous sedation until death as an 'alternative' to euthanasia and whether they sought to follow guidelines or frameworks for practice. CONCLUSION: This qualitative analysis suggests that there is systematic variation in end-of-life care sedation practice and its conceptualization in the United Kingdom, Belgium and the Netherlands.

Factors that facilitate or constrain the use of continuous sedation at the end of life by physicians and nurses in Belgium: results from a focus group study.

Continuous sedation at the end of life (CS) is the practice whereby a physician uses sedatives to reduce or take away a patient's consciousness until death. Although the incidence of CS is rising, as of yet little research has been conducted on how the administration of CS is experienced by medical practitioners. Existing research shows that many differences exist between medical practitioners regarding how and how often they perform CS. We conducted a focus group study to find out which factors may facilitate or constrain the use of continuous sedation by physicians and nurses. The participants often had clear ideas on what could affect the likelihood that sedation would be used. The physicians and nurses in the focus groups testified that the use of continuous sedation was facilitated in cases where a patient has a very limited life expectancy, suffers intensely, makes an explicit request and has family members who can cope with the stress that accompanies sedation. However, this 'paradigm case' was considered to occur only rarely. Furthermore, deviations from the paradigm case were said to be sometimes due to physicians initiating the discussion on CS too late or not initiating it at all for fear of inducing the patient. Deviations from the paradigm case may also occur when sedation proves to be too difficult for family members who are said to sometimes pressure the medical practitioners to increase dosages and speed up the sedation.

Continuous sedation until death: the everyday moral reasoning of physicians, nurses and family caregivers in the UK, The Netherlands and Belgium.

BACKGROUND: Continuous sedation is increasingly used as a way to relieve symptoms at the end of life. Current research indicates that some physicians, nurses, and relatives involved in this practice experience emotional and/or moral distress. This study aims to provide insight into what may influence how professional and/or family carers cope with such distress. METHODS: This study is an international qualitative interview study involving interviews with physicians, nurses, and relatives of deceased patients in the UK, The Netherlands and Belgium (the UNBIASED study) about a case of continuous sedation at the end of life they were recently involved in. All interviews were transcribed verbatim and analysed by staying close to the data using open coding. Next, codes were combined into larger themes and categories of codes resulting in a four point scheme that captured all of the data. Finally, our findings were compared with others and explored in relation to theories in ethics and sociology. RESULTS: The participants' responses can be captured as different dimensions of 'closeness', i.e. the degree to which one feels connected or 'close' to a certain decision or event. We distinguished four types of 'closeness', namely emotional, physical, decisional, and causal. Using these four dimensions of 'closeness' it became possible to describe how physicians, nurses, and relatives experience their involvement in cases of continuous sedation until death. More specifically, it shined a light on the everyday moral reasoning employed by care providers and relatives in the context of continuous sedation, and how this affected the emotional impact of being involved in sedation, as well as the perception of their own moral responsibility. CONCLUSION: Findings from this study demonstrate that various factors are reported to influence the degree of closeness to continuous sedation (and thus the extent to which carers feel morally responsible), and that some of these factors help care providers and relatives to distinguish continuous sedation from euthanasia.

Justifying continuous sedation until death: a focus group study in nursing homes in Flanders, Belgium.

Continuous Sedation until Death (CSD), the act of reducing or removing the consciousness of an incurably ill patient until death, has become a common practice in nursing homes in Flanders (Belgium). Quantitative research has suggested that CSD is not always properly applied. This qualitative study aims to explore and describe the circumstances under which nursing home clinicians consider CSD to be justified. Six focus groups were conducted including 10 physicians, 24 nurses, and 14 care assistants working in either Catholic or non-Catholic nursing homes of varying size. Refractory suffering, limited life expectancy and respecting patient autonomy are considered essential elements in deciding for CSD. However, multiple factors complicate the care of nursing home residents at the end of life, and often hinder clinicians from putting these elements into practice. Nursing home clinicians may benefit from more information and instruction about managing CSD in the complex care situations which typically occur in nursing homes.

Continuous sedation until death: moral justifications of physicians and nurses--a content analysis of opinion pieces.

Continuous sedation until death (CSD), the act of reducing or removing the consciousness of an incurably ill patient until death, often provokes medical-ethical discussions in the opinion sections of medical and nursing journals. A content analysis of opinion pieces in medical and nursing literature was conducted to examine how clinicians define and describe CSD, and how they justify this practice morally. Most publications were written by physicians and published in palliative or general medicine journals. Terminal Sedation and Palliative Sedation are the most frequently used terms to describe CSD. Seventeen definitions with varying content were identified. CSD was found to be morally justified in 73% of the publications using justifications such as Last Resort, Doctrine of Double Effect, Sanctity of Life, Autonomy, and Proportionality. The debate over CSD in the opinion sections of medical and nursing journals lacks uniform terms and definitions, and is profoundly marked by 'charged language', aiming at realizing agreement in attitude towards CSD. Not all of the moral justifications found are equally straightforward. To enable a more effective debate, the terms, definitions and justifications for CSD need to be further clarified.

Characteristics and outcomes of peer consultations for assisted dying request assessments: Cross-sectional survey study among attending physicians.

Background: In most jurisdictions where assisted dying practices are legal, attending physicians must consult another practitioner to assess the patient's eligibility. Consequently, in some jurisdictions, they can rely on the expertise of trained assisted dying consultants (trained consultants). However, these peer consultations remain under-researched. We examined the characteristics and outcomes of peer consultations to assess an assisted dying request with trained consultants, and explored how these characteristics influence the performance of assisted dying. Methods: We conducted a cross-sectional survey in 2019-2020 in Belgium among attending physicians who had consulted a trained consultant for an assisted dying request assessment (N = 904). Results: The valid response rate was 56% (502/903). The vast majority of attending physicians (92%) who had consulted a trained consultant were general practitioners. In more than half of the consultations (57%), the patient was diagnosed with cancer. In 66%, the patient was aged 70 or older. Reported as the patients' most important reasons to request assisted dying: suffering without prospect of improving in 49% of the consultations, loss of dignity in 11%, pain in 9%, and tiredness of life in 9%. In the vast majority of consultations (85%), the attending physician consulted the trained consultant because of the expertise, and in nearly half of the consultations (46%) because of the independence. In more than nine out of ten consultations (91%), the consultant gave a positive advice: i.e., substantive requirements for assisted dying were met. Eight out of ten consultations were followed by assisted dying. The likelihood of assisted dying was higher in consultations in which loss of dignity, loss of independence in daily living, or general weakness or tiredness were reasons for the request. Conclusion: Our findings indicate that the peer consultation practice with trained consultants is most often embedded in a primary care setting. Moreover, our study corroborates previous research in that assisted dying is performed relatively less frequently in patients with cancer and more often in patients with general deterioration. Our findings suggest that attending physicians hold peer consultations with trained consultants to endorse their own decision-making and to request additional support.

Expressed wishes and incidence of euthanasia in advanced lung cancer patients.

This study explores expressed wishes and requests for euthanasia (i.e. administration of lethal drugs at the explicit request of the patient), and incidence of end-of-life decisions with possible life-shortening effects (ELDs) in advanced lung cancer patients in Flanders, Belgium. We performed a prospective, longitudinal, observational study of a consecutive sample of advanced lung cancer patients and selected those who died within 18 months of diagnosis. Immediately after death, the pulmonologist/oncologist and general practitioner (GP) of the patient filled in a questionnaire. Information was available for 105 out of 115 deaths. According to the specialist or GP, one in five patients had expressed a wish for euthanasia; and three in four of these had made an explicit and repeated request. One in two of these received euthanasia. Of the patients who had expressed a wish for euthanasia but had not made an explicit and repeated request, none received euthanasia. Patients with a palliative treatment goal at inclusion were more likely to receive euthanasia. Death was preceded by an ELD in 62.9% of patients. To conclude, advanced lung cancer patients who expressed a euthanasia wish were often determined. Euthanasia was performed significantly more among patients whose treatment goal after diagnosis was exclusively palliative.

Continuous deep sedation at the end of life and the 'natural death' hypothesis.

Surveys in different countries (e.g. the UK, Belgium and The Netherlands) show a marked recent increase in the incidence of continuous deep sedation at the end of life (CDS). Several hypotheses can be formulated to explain the increasing performance of this practice. In this paper we focus on what we call the 'natural death' hypothesis, i.e. the hypothesis that acceptance of CDS has spread rapidly because death after CDS can be perceived as a 'natural' death by medical practitioners, patients' relatives and patients. We attempt to show that the label 'natural' cannot be unproblematically applied to the nature of this end-of-life practice. We argue that the labeling of death following CDS as 'natural' death is related to a complex set of mechanisms which facilitate the use of this practice. However, our criticism does not preclude the view that CDS may be clinically and ethically justified in many cases.

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.

Assisted dying request assessments by trained consultants: changes in practice and quality - Repeated cross-sectional surveys (2008-2019).

OBJECTIVES: To study changes in the peer consultation practice of assessing assisted dying requests and its quality among trained 'Life End Information Forum' (LEIF) consultants in Belgium between 2008 and 2019. METHODS: Cross-sectional surveys conducted in 2008 (N=132) and 2019 (N=527) among all registered LEIF consultants. RESULTS: The response rate was 75% in 2008 and 57% in 2019. In 2019 compared with 2008, more LEIF consultants were significantly less than 40 years old (25%/10%, p=0.006) and at least 60 years old (34%/20%, p=0.006). In their activities regarding assessments of assisted dying requests over 12 months, we found a significant increase in the number of patients who did not meet the substantive requirements for assisted dying in 2019 compared with 2008 (1-4 patients: 41.1 %/58.8%, p=0.020). In their most recent assessments of an assisted dying request, LEIF consultants in 2019 made significantly more assessments of patients aged 80 years or older than in 2008 (31%/9%, p<0.001), and significantly fewer assessments for patients with cancer (53%/70%, p=0.034). Regarding adherence to quality criteria for consultation, LEIF consultants discussed unbearable suffering (87%/65%, p=0.003) and alternative treatments (palliative: 48 %/13%, p<0.001; curative: 28%/5%, p=0.002) significantly more often with the attending physician. CONCLUSIONS: Changes in peer consultation practice and its quality among LEIF consultants likely reflect changes in assisted dying practice in general, as well as changes in LEIF consultations on more complex cases for which LEIF consultants' expertise is required.

Concrete Experiences and Support Needs Regarding the Euthanasia Practice in Adults With Psychiatric Conditions: A Qualitative Interview Study Among Healthcare Professionals and Volunteers in Belgium.

Objective: Although euthanasia in the context of adult psychiatry is legalized in Belgium, it poses major ethical and clinical challenges for the health care professionals and volunteers involved. This study aimed to address these members' concrete experiences and support needs. Methods: A qualitative semi-structured interview study was conducted with 16 physicians and 14 other health care professionals and volunteers, with at least one concrete experience with euthanasia requests and procedures concerning adults with psychiatric conditions. Findings: Concrete experiences concerned the following 8 domains: (1) the impact of euthanasia on the clinical trajectory and (2) on the therapeutic relationship, (3) internal and (4) external collaborative partnerships, (5) patients' social inner circle (non-)involvement, (6) the use of recently published guidelines and, (7) the first criminal trials on this topic, and (8) the act of euthanasia. The following 8 main support needs emerged; (1) protocols addressing specific sub-populations and pathologies, (2) protocols specifically drawn up for non-medics, (3) guidance on how to adequately implement the two-track approach, (4) (after)care for patients, (5) (after)care for the health care team, (6) guidance on the patient's social inner circle involvement, (7) enhanced education measures, and (8) enhanced financial measures, including incentives for holistic, palliative care approaches. Conclusion: The health care professionals and volunteers reported many positive and negative experiences in dealing with euthanasia requests in adult psychiatry. They reported several support needs across the extensive euthanasia trajectory, pertaining to concrete management of thorny issues that guidelines do not (yet) touch on. Important implications of our study relate to tackling these existing issues, and to paying sufficient attention to the impact of a euthanasia trajectory on all actors, including the patients and their social inner circle, involved.

Are patients' preferences for information and participation in medical decision-making being met? Interview study with lung cancer patients.

We examined the degree to which newly diagnosed patients with advanced lung cancer wanted to be informed and involved in medical decision-making, and whether the patients felt their preferences were met. Patients from 13 hospitals in Flanders were interviewed with a standard questionnaire. A total of 128 patients (68%) participated. Of the patients who wanted to be informed about life expectancy, half (53%) reported they were informed, and of those who wanted to be informed about palliative care and end-of-life decisions, 25% and 31% said they were informed, respectively. With regard to participation in medical decision-making (in general, about treatment, transfer or end-of-life), patients who preferred the doctor to make decisions or those who preferred to make the decision themselves often achieved this (in their perception), while patients who wanted an in-between position with some involvement, often did not. To conclude, preferences of patients with lung cancer for information concerning delicate topics and for shared decision-making with the physician were not well met.

Is continuous sedation at the end of life an ethically preferable alternative to physician-assisted suicide?

The relatively new practice of continuous sedation at the end of life (CS) is increasingly being debated in the clinical and ethical literature. This practice received much attention when a U.S. Supreme Court ruling noted that the availability of CS made legalization of physician-assisted suicide (PAS) unnecessary, as CS could alleviate even the most severe suffering. This view has been widely adopted. In this article, we perform an in-depth analysis of four versions of this "argument of preferable alternative." Our goal is to determine the extent to which CS can be considered to be an alternative to PAS and to identify the grounds, if any, on which CS may be ethically preferable to PAS.

Why adults with psychiatric conditions request euthanasia: A qualitative interview study of life experiences, motives and preventive factors.

OBJECTIVE: As the empirical picture of adults with psychiatric conditions (further referred to as 'patients') requesting euthanasia is still incomplete, this study aims to deepen our understanding of why these patients request euthanasia, how this relates to the option of suicide, and what could have prevented these patients from considering death and requesting euthanasia. METHODS: A qualitative study using in-depth, face-to-face interviews was conducted with 16 patients who had their euthanasia request under assessment in the period 2016-2020. Thematic coding was used. FINDINGS: Most patients were in a state of feeling emotionally worn-out as a result of the many accumulated misfortunes and setbacks, leading to the all-pervasive sense that life is no longer worth living. Whereas some patients reported lifelong adversity, others struggled predominantly in later life. Whereas some patients longed for death strongly, others expressed ambivalence towards death ideation, and some even requested euthanasia to hear of their ineligibility for it, to restore hope and to (re)find meaning in life. patients valued euthanasia over suicide as being more dignified and acceptable, both for themselves and for their inner circle. With regard to preventive factors, patients posited the need for improved accessibility and quality of mental healthcare, as well as a profound change in society's perception of, and support for, these patients. CONCLUSIONS: This study revealed the many complexities of euthanasia in the context of psychiatry, due to the many differences in patients' background characteristics, in their motives for requesting euthanasia, and the multi-layered aspects of mental suffering that go beyond the field of psychiatry.

Euthanasia in adults with psychiatric conditions: A descriptive study of the experiences of Belgian psychiatrists.

To investigate the experience of psychiatrists who completed assessment procedures of euthanasia requests from adults with psychiatric conditions (APC) over the last 12 months. Between November 2018 and April 2019 a cross-sectional survey was sent to a sample of 753 psychiatrists affiliated with Belgian organisations of psychiatrists to gather detailed information on their latest experience with a completed euthanasia assessment procedure, irrespective of its outcome (i.e. euthanasia being performed or not). Information on 46 unique cases revealed that most APC suffered from comorbid psychiatric and/or somatic disorders, and had received different kinds of treatment for many years prior to their euthanasia request. Existential suffering was the main reason for the request. The entire procedure spanned an average of 14 months, and an average of 13.5 months in the 23 cases that culminated in the performance of euthanasia. In all cases, the entire procedure entailed multidisciplinary consultations, including with family and friends. Psychiatrists reported fewer difficulties in assessing due care criteria related to the APC's self-contemplation - for example, unbearable suffering on top of the due care criteria related to their medical condition; incurability due to lack of reasonable treatment perspectives. In a few cases in which euthanasia was the outcome, not all legal criteria were fulfilled in the reporting physicians' opinions. Both positive and negative experiences of the assessment procedure were reported: for example, reduced suicide risk for the APC; an emotional burden and a feeling of being pressured for the psychiatrist. This study confirms that euthanasia assessment in APC entails a lengthy process with diverse complexities, and psychiatrists require support in more than one respect if the assessments are to be handled adequately. Thorough evaluation of current guidelines is recommended: that is, to what extent the guidelines sufficiently address the complexities around (e.g.) assessing legal criteria or involving relatives. We formulate various avenues for further research to build on this study's insights and to fill remaining knowledge gaps.