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

Abstract

In 2018, the authors published their analysis of nine online case reports by the Euthanasia Review Committee in the Netherlands, involving people with intellectual disability and/or autism spectrum disorder who were given euthanasia. In this commentary, they reflect further on the challenges of assessing “unbearable suffering without prospect of improvement,” which is one of the Dutch legal due care criteria. Two more recent case reports are presented in detail, where doctors struggled to assess and sometimes came to divergent conclusions. In both cases, limitations resulting from the intellectual disability and autism spectrum disorder were seen by physicians as causes of unbearable suffering, leading them to agreeing to the patient's euthanasia request. The authors discuss their concern about the implications of accepting the effects of lifelong disability as reasons for euthanasia, not only for individuals but for society as a whole.

Disability, vulnerability and assisted death: commentary on Tuffrey-Wijne, Curfs, Finlay and Hollins

“…The recent successful legal challenge in Canada to remove the reasonably foreseeable death requirement coupled with calls to allow EAS by advance directive and to extend eligibility to mature minors and those with psychiatric conditions as the sole underlying conditions all present additional concerns for disabled and other vulnerable persons. The reviews by Tuffrey-Wijne et al [1, 2] coupled with those by Kim et al [3] and others suggest there are serious risks for vulnerable persons even in current EAS regimes let alone those which are evolving to ever greater permissiveness. It is no longer hyperbole that we are at risk of uncritically heading to a place where the phrase ‘better dead than disabled’ becomes an underlying, if unspoken, driver of policy and practice.…”

“…Tuffrey-Wijne, Curfs, Finlay and Hollins [1] 2018 paper and a follow up paper [2] present a troubling picture regarding the euthanasia of persons with intellectual disabilities and autism spectrum disorder in the Netherlands. They identify six case reports of people with intellectual disability and three of people with autism in records covering 2012–2016.…”

“…They identify six case reports of people with intellectual disability and three of people with autism in records covering 2012–2016. In a subsequent review covering 2017 and 2018, they identified a further four cases of people with intellectual disabilities, one of whom also had autism spectrum disorder, and three with autism spectrum disorder [2]. In their analysis of the data they raise serious concerns about both the difficulties in assessing whether the patient had made a “voluntary and well-considered request” (one of the legal due care criteria), which as they note, is closely linked to an assessment of the patient’s decision-making capacity, and the stringency of the assessments used to make the above determinations.…”

“…In their subsequent paper, they raise further concerns about another of the due care criteria which requires that patients are experiencing “unbearable suffering without prospect of improvement”. As they note, ‘This requirement poses a key challenge in relation to euthanasia requests from people with intellectual disabilities and/or autism spectrum disorder, particularly if the nature of suffering for which euthanasia is sought is related to, or affected by, their disability’ [2]. They conclude their 2018 paper with the following reflection: ‘we speculate that many of the challenges highlighted in this paper could also be relevant to patients in the general population, and that they are simply more pronounced or extreme for vulnerable patient groups.…”

“…One of the key features of all of these arguments is the assumption of ‘suffering’ as inherent to disability. As Tuffrey-Wijne et al note: ‘the fact that the disability itself, rather than an acquired medical condition, can be accepted as a cause of suffering that justifies euthanasia is deeply worrying [2]. ’ Where this becomes most concerning is when it is operationalized through approaches like Quality Adjusted Life Years (QALYs) to determine what, if any, interventions offer the best cost benefit outcome [27].…”