Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012–2016)

Abstract

BackgroundEuthanasia and assisted suicide (EAS) have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: (a) voluntary and well-considered request; (b) unbearable suffering without prospect of improvement; (c) informing the patient; (d) lack of a reasonable alternative; (e) independent second physician’s opinion. ‘Unbearable suffering’ must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees (RTE). The purpose of this study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder.MethodsThe 416 case summaries available on the RTE website (2012–2016) were searched for intellectual disability (6) and autism spectrum disorder (3). Direct content analysis was used on these nine cases.ResultsAssessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient’s perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis.ConclusionsAutonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS. The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards.Electronic supplementary materialThe online version of this article (10.1186/s12910-018-0257-6) contains supplementary material, which is available to authorized users.

Shared decision‐making with people with intellectual disabilities in the last phase of life: A scoping review

“…In two studies, people with ID were informed about their situation and their prospects (Van Thiel et al 1997;Tuffrey-Wijne et al 2018). In one study, this was done by 'sufficiently informing her at her own level' (Tuffrey-Wijne et al 2018). In another study, this process remained unclear (Van Thiel et al 1997).…”

“…Of the 10 included studies, eight were conducted in the Netherlands, one in Australia, and one in the United States. Six studies were (semi-structured) interview studies (Van Thiel et al 1997;Wagemans et al 2013a;Wagemans et al 2013b;Bekkema et al 2015;Zaal-Schuller et al 2016;Zaal-Schuller et al 2018), two included multiple case studies (Watson et al 2017;Tuffrey-Wijne et al 2018), one was a single case study (Lohiya et al 2003), and in one study, medical files were examined (Wagemans et al 2010). All studies had an observational design.…”

“…In four studies, people with ID received residential care (Van Thiel et al 1997;Lohiya et al 2003;Wagemans et al 2010;Wagemans et al 2013a), in four other studies, they received residential and community-based care (Wagemans et al 2013b;Bekkema et al 2015;Watson et al 2017;Tuffrey-Wijne et al 2018), and for two studies, this was not specified (Zaal-Schuller et al 2016;Zaal-Schuller et al 2018), see Table 1 for an overview.…”

“Because of His Intellectual Disability, He Couldn't Cope.” Is Euthanasia the Answer?

“…We found six case reports of people with intellectual disability and three of people with autism spectrum disorder. We published our analysis of these reports last year (Tuffrey‐wijne, Curfs, Finlay, & Hollins, ); our study is briefly described in the longer version of the Eugenics position paper.…”

The Quiet Progress of the New Eugenics. Ending the Lives of Persons With Intellectual and Developmental Disabilities for Reasons of Presumed Poor Quality of Life

“…Accordingly, it became possible to consider the request of a person with IDD as valid in view of the established requirements. Thus a Dutch study reported nine cases involving seven persons with IDD in the period 2012–16 and found that a key problem was to determine in what sense and to what extent there was an explicit and repeated request that was actually understood as such by the person involved (Tuffrey‐Wijne, Curfs, Finlay, & Hollins, ).…”