Cause of death and making end-of-life decisions in preterm infants has not changed over time: A mortality follow-back survey.

AIM: This study aimed to evaluate changes over time in cause of death and making end-of-life decisions in preterm infants. METHODS: A follow-back survey was conducted of all preterm infants who died between September 2016 and December 2017 in Flanders and Brussels, Belgium. Cause of death was obtained from the death certificate and information on end-of-life decisions (ELDs) through an anonymous questionnaire of the certifying physician. Results were compared with a previous study performed between August 1999 and July 2000. RESULTS: In the cohort 1999-2000 and 2016-2017, respectively, 150 and 135 deaths were included. A significantly higher proportion of infants born before 26 weeks of gestation was found in the 2016-2017 cohort (53% vs. 24% in 1999-2000, p < 0.001). Extreme immaturity (<26 weeks) remained the most prevalent cause with a significant increase in the 2016-2017 cohort (48% vs. 28% in 1999-2000, p < 0.001). The overall prevalence of ELDs was similar across study periods (61%). Non-treatment decisions remained the most common ELD (36% and 37%). CONCLUSION: Infants born at the limits of viability have become more prevalent among infant deaths, possibly due to a change in attitude towards periviable births. Neither the process of making ELDs nor the cause of death has changed over time.

A compassionate university for serious illness, death, and bereavement: Qualitative study of student and staff experiences and support needs.

Serious illness, death, and bereavement are common experiences within the work and study context. This study aims to explore the experiences and support needs of university students and staff confronted with serious illness, death, and bereavement. Semi-structured interviews and focus groups were conducted with 21 students and 26 staff. A thematic analysis resulted in three overarching themes: the university as a high-pressure environment; navigating the complex university information and support system; and disenfranchized grief. Four themes were identified in terms of what participants needed from the university: clear processes and procedures; flexibility in policy application; proactive support and recognition; and activities to enhance awareness and interpersonal communication skills. Findings from this study could enable higher education institutions to become more compassionate schools and workplaces.

Researching Compassionate Communities: Identifying theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives.

BACKGROUND: Compassionate Communities have been put forward as a new model for community-based palliative care to positively impact the health and wellbeing of those experiencing challenges of serious illness, death, dying, and loss. Despite the growing international movement to develop these public health initiatives to end-of-life care, only a handful of initiatives have undergone some form of evaluation. AIM: To provide guidance on designing evaluation research by identifying theoretical frameworks to understand the development, implementation, and underlying mechanisms of Compassionate Communities. METHODS: To identify suitable theoretical frameworks for the study of Compassionate Communities, we applied two steps. The first step examined the characteristics of Compassionate Communities and translated them into assessment criteria for the selection of theoretical frameworks. The second step consisted of applying the identified assessment criteria to a list of widely used and highly cited theoretical frameworks. RESULTS: Three well-established theoretical frameworks were identified as being most suitable to study the development, implementation, and underlying mechanisms of Compassionate Communities: The Consolidated Framework for Implementation Research (CFIR), the integrated-Promoting Action on Research Implementation in Health Services framework (i-PARIHS), and the Extended Normalization Process Theory (ENPT). CONCLUSIONS: The article supports and encourages the use of theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives. The complementary use of two determinant frameworks and an implementation theory provides theoretical grounding to gain rich insights into the emergent and shifting interplays between agency, social processes, and contextual factors that shape the development and implementation of Compassionate Communities.

Pregnancy termination at a viable stage in daily clinical practice: A nationwide mortality follow-back study in Flanders, Belgium.

OBJECTIVE: Congenital malformations are frequently diagnosed prenatally even at a viable stage. No adequate registration of incidence and characteristics of late termination of pregnancy (TOP) or abortion for medical reasons exists in Flanders. METHODS: Nationwide mortality follow-back survey sent to physicians signing death certificates of all stillbirths for 22 weeks gestation onward (September 2016-December 2017) in Flanders, Belgium. Questions measured whether late TOP preceded stillbirth, and which clinical and sociodemographic characteristics were indicated. Questionnaire data were linked with sociodemographic information from death certificates. RESULTS: Response rate was 56% (203/366). 38% of stillbirths (77/203) concerned late TOP. In 88.3% of late TOPs, physicians classified congenital anomalies of the foetus as serious or very serious (incompatibility with life outside the womb or severe neurological or physical impairment). In 26% of cases, late TOP was first suggested by the physician rather than spontaneously requested by parents (73%). 88% of late TOPs were discussed in open team meetings. CONCLUSIONS: 2/5 stillbirths were preceded by late TOP, indicating severe underreportation by existing registrations and a dire need for adequate registration methods. Although late TOP was most often explicitly requested by parents, in » cases termination was suggested first by physicians. Parents are sometimes hesitant to bring up late TOP themselves, indicating that TOP should always be counselled as an equivalent option.

How compassionate is your neighborhood? Results of a cross-sectional survey on neighborhood participation regarding serious illness, death, and loss.

We conducted a cross-sectional survey measuring the extent and nature of neighborhood participation regarding serious illness, death and loss and the factors that are associated with it. We distributed the survey to 2324 adult citizens in two neighborhoods in Flanders, Belgium, to which 714 citizens responded (response rate 30.7%). Of the respondents, 42.4% participated in at least one action in their neighborhood around serious illness, death, or loss, for 30.8% of them this participation was sporadic. Most of the respondents participated by helping neighbors (32.4%) or by volunteering (10.3%). We found a positive association between perceived neighborhood social cohesion (ß = 0.100; CI = 0.003-0.040), previous experiences with serious illness, death, and loss (ß = 0.158; CI = 0.204-0.586) and neighborhood participation around serious illness, death and loss. Future research should investigate strategies on how to move from death literacy developed through illness, caregiving and bereavement experiences to neighborhood participation around these topics.

What Domains of Belgian Euthanasia Practice are Governed and by Which Sources of Regulation: A Scoping Review.

BACKGROUND: Multiple sources of regulation seek to shape euthanasia practice in Belgium, including legislation and training. This study comprehensively mapped which of these sources govern which domains of euthanasia practice, such health professionals' obligations, or managing patient requests. METHOD: Scoping review methodology was used to search for scholarly records which discussed Belgian euthanasia regulation. Template analysis was used to generate themes describing the domains of euthanasia practice governed by sources of regulation. RESULTS: Of 1364 records screened, 107 records were included. Multiple sources of regulation govern each domain, which are: the permissible scope of euthanasia; the legal status of a euthanasia death; the euthanasia process; the rights, obligations, and roles of those involved; system workings; and support for health professionals who provide euthanasia. CONCLUSIONS: Domains with significant yet fragmented regulation may lead to inconsistent care provision. Policymakers should develop coherent guidance to support health professionals to navigate this regulatory landscape.

Mapping Sources of Assisted Dying Regulation in Belgium: A Scoping Review of the Literature.

Belgium has over 20 years of experience regulating assisted dying (AD). While much research considers this end-of-life practice, no studies have comprehensively analysed the various sources of regulation that govern it, including law, professional standards, and ethics. A scoping review identified all sources of regulation that guide AD practice, and their regulatory functions. Databases and reference lists were searched for records which met inclusion criteria between 11/2/22 and 25/3/22. Existing scholarship was used to identify sources of regulation, and thematically analyse their functions. Of the initial sample of 1364 records, 107 were included. Six sources of regulation were identified: law, policies, professional standards, training, advisory documents, and system design. Three regulatory functions were identified: prescribing conduct, scaffolding to support practice, and monitoring the system. The Belgian AD regulatory framework is multifaceted, complex, and fragmented. Providers must navigate and reconcile numerous sources of guidance providing this form of end-of-life care.

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.

Area-Based Compassionate Communities: A systematic integrative review of existing initiatives worldwide.

BACKGROUND: Area-Based Compassionate Communities are community public health interventions which focus on the role of the community in palliative care provision. They apply a set of actions based on the Ottawa Charter for Health Promotion which aims to increase people's control over their health. AIM: To review and compare Area-Based Compassionate Communities with respect to their contextual characteristics, development processes and evaluations. DESIGN: A systematic integrative review with narrative synthesis. Registered in Prospero: CRD42020173406. DATA SOURCES: Five databases (Pubmed, Web of Science, PsycInfo, Embase and Scopus) were consulted, consisting of publications from 1999 onwards. This was supplemented with grey literature and author-provided documentation. RESULTS: Twenty articles were drawn from the peer reviewed search, three from grey literature and two from author-provided documentation. Notwithstanding the substantial variation in what is reported, all Area-Based Compassionate Community initiatives focus on multiple action areas of the Ottawa Charter for Health Promotion. Variability in their contextual and developmental characteristics is high. Only a minority of initiatives have been evaluated and although conclusions are generally positive, what is evaluated often does not match their aims. Attaining support from policy makers can help in obtaining funding early in the project. Strengthening people's social networks was a recurring community engagement strategy. CONCLUSIONS: While the concept of Area-Based Compassionate Communities is gaining momentum as a new paradigm for the creation of palliative care capacity across society, only a handful of initiatives have been described. The lack of formal evaluations of their envisaged health benefits indicates a pressing need for rigorous research about ongoing and future initiatives.

Civic engagement in serious illness, death, and loss: A systematic mixed-methods review.

BACKGROUND: New public health approaches to palliative care such as compassionate communities aim to increase capacity in serious illness, death, and loss by involving civic society. Civic engagement has been described in many domains of health; a description of the characteristics, processes, and impact of the initiatives in palliative care is lacking. AIM: To systematically describe and compare civic engagement initiatives in palliative care in terms of context, development, impact, and evaluation methods. DESIGN: Systematic, mixed-methods review using a convergent integrated synthesis approach. Registered in Prospero: CRD42020180688. DATA SOURCES: Six databases (PubMed, Scopus, Sociological Abstracts, WOS, Embase, PsycINFO) were searched up to November 2021 for publications in English describing civic engagement in serious illness, death, and loss. Additional grey literature was obtained by contacting the first authors. We performed a quality appraisal of the included studies. RESULTS: We included 23 peer-reviewed and 11 grey literature publications, reporting on nineteen unique civic engagement initiatives, mostly in countries with English as one of the official languages. Initiatives involved the community in their development, often through a community-academic partnership. Activities aimed to connect people with palliative care needs to individuals or resources in the community. There was a variety of evaluation aims, methods, outcomes, and strength of evidence. Information on whether or how to sustain the initiatives was generally lacking. CONCLUSIONS: This is the first review to systematically describe and compare reported civic engagement initiatives in the domain of palliative care. Future studies would benefit from improved evaluation of impact and sustainability.

Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative study.

BACKGROUND: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents during decision-making. AIM: To identify barriers and facilitators experienced by parents in making an end-of-life decision for their infant. DESIGN: Qualitative study using face-to-face semi-structured interviews. SETTING/PARTICIPANTS: We interviewed 23 parents with a child that died after an end-of-life decision at a Neonatal Intensive Care Unit between April and September 2018. RESULTS: Parents stated barriers and facilitators within 4 themes: 1. Clinical knowledge and prognosis; 2. Quality of information provision; 3. Emotion regulation; and 4. Psychosocial environment. Facilitators include knowing whether the prognosis includes long-term negative quality of life, knowing all treatment options, receiving information according to health literacy level, being able to process intense emotions, having experienced counseling and practical help. Barriers include a lack of general medical knowledge, being unprepared for a poor prognosis, having an uninformed psychologist. CONCLUSIONS: We found that clinical information and psychosocial support aid parents in decision-making. Information is best tailored to health literacy. Psychosocial support can be provided by experienced, informed counselors, social services and sibling support, distinguishing between verbal and non-verbal coping preferences, and calm, familiar architecture. Intense emotions may hinder absorption of clinical information, therefore interventions to aid emotion regulation and reduce cognitive load may be looked at in further research. Adjustment of the Situations, Opinions and Options, Parents, Information, Emotions framework based on our results can be evaluated.

Consultation of parents and healthcare professionals in end-of-life decision-making for neonates and infants: a population-level mortality follow-back physician survey.

BACKGROUND: End-of-life decisions with potential life-shortening effect in neonates and infants are common. We aimed to evaluate how often and in what manner neonatologists consult with parents and other healthcare providers in these cases, and whether consultation is dependent on the type of end-of-life decision made. METHODS: Based on all deaths under the age of one that occurred between September 2016 and December 2017 in Flanders, Belgium, a nationwide mortality follow-back survey was performed. The survey asked about different types of end-of-life decisions, and whether and why parents and/or other healthcare providers had or had not been consulted. RESULTS: Response rate was 83% of the total population. End-of-life decisions in neonates and infants were consulted both with parents (92%) and other healthcare providers (90%), and agreement was reached between parents and healthcare providers in most cases (96%). When medication with an explicit life-shortening intent was administered parents were always consulted prior to the decision; however when medication without explicit life-shortening intention was administered parents were not consulted in 25% of the cases. CONCLUSIONS: Shared decision-making between parents and physicians in case of neonatal or infant end-of-life decision-making is the norm in daily practice. All cases without parental consultation concerned non-treatment decisions or comfort medication without explicit life-shortening intention where physicians deemed the medical situation clear and unambiguous. However, we recommend to at least inform parents of medical options, and to explore other possibilities to engage parents in reaching a shared decision. Physicians consult other healthcare providers before making an end-of-life decision in most cases.

Is progress being made on Canada's palliative care framework and action plan? A survey of stakeholder perspectives.

BACKGROUND: The legalization of Medical Assistance in Dying in Canada in 2016 provided new impetus for improving palliative care. This commitment to improvement included the development of a National Palliative Care Framework and Action Plan. The purpose of this study was to understand the progress made in palliative care since 2016 from the perspective of persons working and volunteering in palliative care and compare geographic differences. METHODS: A digital survey was developed from goals identified in Canada's Palliative Care Framework and Action Plan and administered online using Qualtrics. Participants were recruited through national palliative care organizations. The survey included both quantitative survey items designed to evaluate improvements across 5 domains and 29 items and included open-ended questions about impacts, innovations, and ongoing challenges. Descriptive statistics were generated for survey domains, items, and demographic variables. Geographic differences were compared using Independent-Samples Kruskal-Wallis test. Qualitative data was analyzed inductively into themes. RESULTS: One hundred fifty surveys met inclusion criteria and were analysed. Overall, the most improvement was reported in palliative care education and the least improvement was reported in support for family caregivers. Items on which respondents reported the most improvement included healthcare provider education in palliative care, advance care planning, and use of technology. Items on which respondents reported the least improvement were respite for family caregivers, access to bereavement services, and in-home support for family caregivers. Notably, rural participants reported more statistically significant improvements in the domains of education, access, and research and data collection than their urban counterparts. However, rural participants reported less improvement in places to die when home is not preferable. The COVID-19 pandemic was a significant contributor to these perceived improvements and ongoing challenges. CONCLUSION: Canada's Framework and Action Plan sets out a roadmap for improving palliative care in Canada. Participants in this survey noted significant improvements in key areas, a notable accomplishment amidst the effects of the COVID-19 pandemic. Some improvements were a result of greater use of distance technology. Further leveraging these improvements will make an important contribution to solving some of the rural and remote palliative care issues that have arisen from Canada's unique geography.

Assisted Deaths Prior to the Voluntary Assisted Dying Act 2017 (Vic): Would Patients Have Met the Eligibility Criteria to Request Voluntary Assisted Dying?

Unlawful assisted dying practices have been reported in Australia for decades. Voluntary assisted dying (VAD) is now lawful in Victoria and Western Australia in limited circumstances and will soon be lawful in a further four Australian States. This article examines nine cases involving unlawful assisted dying practices in Victoria in the 12 months prior to the commencement of the Voluntary Assisted Dying Act 2017 (Vic) in 2019. It explores whether, if that Act had been in operation at the relevant time, these patients would have been eligible to request VAD, having regard to their decision-making capacity and their disease, illness or medical condition. Many of these patients would not have been eligible to request VAD had the legislation been operational, primarily because they lacked decision-making capacity. As VAD is lawful only in a narrow set of circumstances, unlawful assisted deaths may continue to occur in those States where voluntary assisted dying is legal.

A systematic review of quality improvement initiatives for continuous sedation until death.

BACKGROUND: Extensive debate surrounds the practice of continuous sedation until death within end-of-life care. AIM: To provide insight into existing initiatives to support the practice of continuous sedation until death and assess their feasibility and effectiveness. DESIGN: Systematic review and narrative synthesis, registered on PROSPERO (CRD42020149630). DATA SOURCES: Records were searched through MEDLINE, EMBASE, CENTRAL, CINAHL, and Web of Science from inception to April 16 2020. Peer-reviewed studies reporting original data on initiatives to support the practice of continuous sedation were included for review. RESULTS: Twenty-one studies met the criteria and were included. Initiatives were focused on assessment tools of consciousness and discomfort (9), the use of guidelines and protocols (8), and expert consultation (3). All initiatives were reported as useful, acceptable, and feasible. Studies on the use of monitoring devices showed that a small proportion of patients were found to be awake, despite the patient being unresponsive according to the observer-based sedation scales. However, the wide range of values of these monitoring devices for comfortable and adequately sedated patients seems to hamper its overall implementation in daily clinical practice. Physicians reported changes in practice conform to guideline recommendations but the shift was modest at best. Expert consultation was regarded as supportive when sufficient expertise is lacking and helpful in avoiding possibly unnecessary sedations. CONCLUSIONS: The reviewed initiatives may contribute to improvement of continuous sedation until death, though their evidence base is rather limited. More insight is needed into their feasibility, preconditions for effective implementation and impact in actual practice.

Healthcare professionals' attitudes towards termination of pregnancy at viable stage.

INTRODUCTION: Upon prenatal diagnosis of congenital malformations, termination of pregnancy (TOP) may be an option, sometimes at a gestational age when the fetus is already viable (late TOP). We aimed to study attitudes towards late TOP of all tertiary healthcare professionals involved in late TOP practice. MATERIAL AND METHODS: A mail survey was conducted among all physicians and paramedical professionals involved in late TOP decision-making in all eight centers with a Neonatal Intensive Care Unit in Flanders, Belgium (N = 117). The questionnaire contained general and case-based attitude items. RESULTS: Response rate was 79%. Respondents were either physicians (51.1%) or paramedical professionals (49.9%). The composition of professionals involved in late TOP decision-making was heterogeneous between the eight centers. Late TOP was highly accepted in both lethal fetal conditions (100%) and serious (but not lethal) fetal conditions (95.6%). Where the fetus is healthy, 19.8% of respondents agreed with late TOP for maternal psychological problems and fewer respondents (13.2%) agreed with late TOP in the case of maternal socio-economic problems (P = .002). Physicians more often preferred feticide over neonatal palliative care in the case of non-lethal fetal conditions compared with paramedical professionals (68.1% vs 53.2%, P = .013). Almost nine out of ten respondents (89.1%) agreed that in the event of a serious (non-lethal) neonatal condition, administering drugs with the explicit intention to end neonatal life was acceptable. Behavioral intentions indicate that even in situations with an unclear diagnosis and unpredictable prognosis, 85.6% of professionals would still consider late TOP. CONCLUSIONS: Healthcare professionals practicing late TOP in Flanders, Belgium have a high degree of tolerance towards late TOP, irrespective of sociodemographic factors, and are demanding legislative change regarding active life-ending in the fetal and neonatal periods. Further research should explore the correlation of attitudes to late TOP with actual medical decisions taken in daily clinical practice.

Views of disability rights organisations on assisted dying legislation in England, Wales and Scotland: an analysis of position statements.

Assisted dying is a divisive and controversial topic and it is therefore desirable that a broad range of interests inform any proposed policy changes. The purpose of this study is to collect and synthesize the views of an important stakeholder group-namely people with disabilities (PwD)-as expressed by disability rights organisations (DROs) in Great Britain. Parliamentary consultations were reviewed, together with an examination of the contemporary positions of a wide range of DROs. Our analysis revealed that the vast majority do not have a clear public stance; those that do exhibit a significant diversity of opinion. DROs opposing legislation on assisted dying have argued that it would be premature, misguided, inequitable and culturally undesirable. Some specify conditions that would have to be satisfied before they could support legalisation, such as radical improvements in health and social care services (especially those relating to end of life care) and the elimination of discrimination against PwD. DROs supporting assisted dying maintain that a change in the law would promote autonomy, end intense suffering, can be delivered safely and is supported by the DRO's membership. The discussion considers the reasons why several DROs adopt a neutral stance and the argument is made that, whatever their overarching stance on the issue, DROs need to be involved in the policy debate so that the crucial perspectives of PwD are heard and addressed. This is an important message for countries around the world that permit, or are considering legalising, assisted dying.

Intentional hastening of death through medication: a case series analysis of Victorian deaths prior to the Voluntary Assisted Dying Act 2017.

BACKGROUND: Voluntary assisted dying is lawful in Victoria in limited circumstances and commences in Western Australia in mid-2021. There is evidence that in rare cases, unlawful assisted dying practices occur in Australia. AIMS: To determine whether assisted dying practices occurred in Victoria in the 12 months prior to the commencement of the Voluntary Assisted Dying Act 2017 (Vic) ('VAD Act'), and to examine features of any identified cases. METHODS: Exploratory case series of adult patients in Victoria who died between May 2018 and 18 June 2019 as a result of medication administered with the primary intention of hastening death. Cases were identified from a self-administered survey about medical end-of-life decisions for adult patients, completed by Victorian specialists treating adults at the end of life. We examined reported use of medication with the primary intention of hastening the patient's death; characteristics of assisted dying cases, including doctors' classification of such practices. RESULTS: Nine cases met the inclusion criteria. Death did not occur immediately after providing medication with the intention of hastening death. In eight cases, it was framed as palliative or terminal sedation and/or continuous deep sedation. Most doctors used language that distanced their practices from assisted dying. CONCLUSIONS: Unlawful assisted dying practices seem to have occurred in a small number of deaths in Victoria prior to commencement of the VAD Act. These practices typically occurred within the context of palliative or terminal sedation and may be difficult to distinguish from lawful palliative care practice. Some survey responses possibly reflect ambiguity in doctors' intentions when providing medication.

Navigating medical assistance in dying from Bill C-14 to Bill C-7: a qualitative study.

BACKGROUND: Even as healthcare providers and systems were settling into the processes required for Medical Assistance in Dying (MAID) under Bill C-14, new legislation was introduced (Bill C-7) that extended assisted death to persons whose natural death is not reasonably foreseeable. The purpose of this paper is to describe the experiences of nurses and nurse practitioners with the implementation and ongoing development of this transition. METHODS: This qualitative longitudinal descriptive study gathered data through semi-structured telephone interviews with nurses from across Canada; cross sectional data from 2020 to 2021 is reported here. The study received ethical approval and all participants provided written consent. FINDINGS: Participants included nurses (n = 34) and nurse practitioners (n = 16) with significant experience with MAID. Participants described how MAID had transitioned from a new, secretive, and anxiety-producing procedure to one that was increasingly visible and normalized, although this normalization did not necessarily mitigate the emotional impact. MAID was becoming more accessible, and participants were learning to trust the process. However, the work was becoming increasingly complex, labour intensive, and often poorly remunerated. Although many participants described a degree of integration between MAID and palliative care services, there remained ongoing tensions around equitable access to both. Participants described an evolving gestalt of determining persons' eligibility for MAID that required a high degree of clinical judgement. Deeming someone ineligible was intensely stressful for all involved and so participants had learned to be resourceful in avoiding this possibility. The required 10-day waiting period was difficult emotionally, particularly if persons worried about losing capacity to give final consent. The implementation of C-7 was perceived to be particularly challenging due to the nature of the population that would seek MAID and the resultant complexity of trying to address the origins of their suffering within a resource-strapped system. CONCLUSIONS: Significant social and system calibration must occur to accommodate assisted death as an end-of-life option. The transition to offering MAID for those whose natural death is not reasonably foreseeable will require intensive navigation of a sometimes siloed and inaccessible system. High quality MAID care should be both relational and dialogical and those who provide such care require expert communication skills and knowledge of the healthcare system.

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.