Euthanasia requests in dementia cases; what are experiences and needs of Dutch physicians? A qualitative interview study

Abstract

Background In the Netherlands, in 2002, euthanasia became a legitimate medical act, only allowed when the due care criteria and procedural requirements are met. Legally, an Advanced Euthanasia Directive (AED) can replace direct communication if a patient can no longer express his own wishes. In the past decade, an exponential number of persons with dementia (PWDs) share a euthanasia request with their physician. The impact this on physicians, and the consequent support needs, remained unknown. Our objective was to gain more insight into the experiences and needs of Dutch general practitioners and elderly care physicians when handling a euthanasia request from a person with dementia (PWD). Methods We performed a qualitative interview study. Participants were recruited via purposive sampling. The interviews were transcribed verbatim, and analyzed using the conventional thematic content analysis. Results Eleven general practitioners (GPs) and elderly care physicians with a variety of experience and different attitudes towards euthanasia for PWD were included. Euthanasia requests appeared to have a major impact on physicians. Difficulties they experienced were related to timing, workload, pressure from and expectations of relatives, society’s negative view of dementia in combination with the ‘right to die’ view, the interpretation of the law and AEDs, ethical considerations, and communication with PWD and relatives. To deal with these difficulties, participants need support from colleagues and other professionals. Although elderly care physicians appreciated moral deliberation and support by chaplains, this was hardly mentioned by GPs. Conclusions Euthanasia requests in dementia seem to place an ethically and emotionally heavy burden on Dutch GPs and elderly care physicians. The awareness of, and access to, existing and new support mechanisms needs further exploration.

Supporting GPs around euthanasia requests from people with dementia: a qualitative analysis of Dutch nominal group meetings

“… 37 , 38 A qualitative interview study among Dutch care physicians for older people and GPs described that only care physicians for older people mentioned MCD as a form of support when dealing with a PWD’s euthanasia request. 17 The fact that this form of support was hardly mentioned by GPs was probably due to the unfamiliarity and unavailability of MCD in general practices. 17 In addition, a former ethicist of one of the regional euthanasia review committees recently stated publicly that in complex cases, like euthanasia in PWD, ethical and moral reflection is largely lacking.…”

“… 17 The fact that this form of support was hardly mentioned by GPs was probably due to the unfamiliarity and unavailability of MCD in general practices. 17 In addition, a former ethicist of one of the regional euthanasia review committees recently stated publicly that in complex cases, like euthanasia in PWD, ethical and moral reflection is largely lacking. The former ethicist called for a ‘more severe proactive review’ that is ‘broader in scope’ for complex cases using a multidisciplinary approach.…”

“… 16 A recent qualitative study on Dutch physicians’ experiences in dealing with euthanasia requests of PWD confirmed this experienced pressure. 17 GPs experience problems with communication, pressure from relatives, patients, society, workload, interpretation of the law, and ethical considerations. Moreover, if honoured, the GP and patient may interpret the right moment for euthanasia differently.…”

Relational autonomy in end-of-life care ethics: a contextualized approach to real-life complexities

“…Dealing with a euthanasia request, a Dutch physician explains: "I think as a doctor, you need to prepare for this [situation] really well, not just at that particular moment [of the request], but you need to start years before. You need to discuss things and document them repeatedly" [52].…”

A Netnographic Approach: Views on Assisted Dying for Individuals With Dementia

“…While assisted dying and its moral and ethical underpinnings are debated worldwide, much more attention is directed toward extending its provision to individuals with dementia (Bravo et al, 2019; Evenblij et al, 2019; Picard et al, 2019). Alongside the growth in public discussion in the past decade, some societies have witnessed an exponential increase in (a) acceptability among health professionals (HPs) of providing such assistance (Bolt et al, 2015; Bravo et al, 2018b, 2019; Cleemput & Schoenmakers, 2019; Rietjens et al, 2005; Rurup et al, 2006), (b) the number of requests from persons with dementia (Schuurmans et al, 2019), and (c) the desire for access to an assisted death from patients with dementia and their families (Bravo et al, 2018a; Cleemput & Schoenmakers, 2019; Kouwenhoven et al, 2013; Tomlinson & Stott, 2015). The presence of an advance euthanasia directive (AED) that is written prior to the loss of decisional competency significantly contributes to increased acceptance to extend assisted dying to those who are at an advanced stage of dementia.…”