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Abstract
Autistic people have died by euthanasia and assisted suicide (EAS) in Belgium and the Netherlands. While these countries’ laws allow EAS for patients suffering from nonterminal psychological disorders when certain “due care” criteria are met, the practice of granting EAS for psychological disorders in general has drawn scrutiny. But there are complex issues specific to autism that have received little attention. The author examines three important questions about the Belgian and Dutch due care criteria as they pertain to autism. First, how might autism affect decision-making capacity for EAS? Second, how might autism affect the voluntariness of EAS requests? Third, is autism a medically futile condition such that there is no reasonable alternative to EAS for alleviating suffering? The author argues that what is known about autism vis-à-vis these due care criteria suggests that autistic people might be a vulnerable group at heightened risk for irremediable harm of premature death from EAS.
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Notes
Notes
1 The Dutch RTEs publish annual reports containing general information about all EAS cases in a given year, and post selected case files in a database on the RTE website. As the RTEs do not post all of their case files online, though, we cannot infer anything about the frequency with which autistic people have died by assisted suicide in the Netherlands from the online files. New files involving individuals with ASD have been posted since the initial writing of this article, and will be addressed in a future update.
2 According to the Dutch Termination of Life on Request and Assisted Suicide (Review Procedures) Act of 2002, “the requirements of due care . . . mean that the physician: a) holds the conviction that the request by the patient was voluntary and well-considered, b) holds the conviction that the patient’s suffering was lasting and unbearable, c) has informed the patient about the situation he was in and about his prospects, d) [the physician] and the patient hold the conviction that there was no other reasonable solution for the situation he was in, e) has consulted at least one other, independent physician who has seen the patient and has given his written opinion on the requirements of due care, referred to in parts a–d, and f) has terminated a life or assisted in a suicide with due care” (Ch. II, article 2, section 1, italics added). The Dutch RTE Code of Practice presents an alternate translation of the relevant section of the Dutch Act, but the substance of the requirements is the same: “In order to comply with the due care criteria referred to in . . . the Criminal Code, the physician must: a. be satisfied that the patient’s request is voluntary and well considered; b. be satisfied that the patient’s suffering is unbearable, with no prospect of improvement; c. have informed the patient about his situation and prognosis; d. have come to the conclusion, together with the patient, that there is no reasonable alternative in the patient’s situation; e. have consulted at least one other, independent physician, who must see the patient and give a written opinion on whether the due care criteria set out in (a) to (d) have been fulfilled; f. have exercised due medical care and attention in terminating the patient’s life or assisting in his suicide” (pp. 35–36, italics added).
The requirements set forth in the Belgian Act on Euthanasia of May 28th, 2002 are similar: “The physician who performs euthanasia commits no criminal offence when he/she ensures that: the patient has attained the age of majority or is an emancipated minor, and is legally competent and conscious at the moment of making the request; the request is voluntary, well-considered and repeated, and is not the result of any external pressure; the patient is in a medically futile condition of constant and unbearable physical or mental suffering that can not be alleviated, resulting from a serious and incurable disorder caused by illness or accident; and when he/she has respected the conditions and procedures as provided in this Act” (Ch. II, section 3, par. 1, italics added).
3 While the Dutch act does not stipulate legal competence or decision-making capacity explicitly, the Dutch RTE Code of Practice nevertheless clarifies that for the request to be voluntary, the patient must be “decisionally competent” (p. 12; see also section 4.3, p. 26).
4 According to the Dutch RTE Code of Practice, “it must be palpable to the physician that this particular patient’s suffering is unbearable. The physician must therefore not only be able to empathise with the patient’s situation, but also see it from the patient’s point of view” (section 3.3, p. 14). For discussion of the term palpable, see Tuffrey-Wijne et al. (Citation2018)
5 Note that the Belgian act, like the Dutch act, uses the language of there being “no other reasonable alternative” in the section following the one quoted above (see Ch. II, section 3, par. p. 2).
6 Note that there is high co-occurrence of ASD and anxiety (e.g., Stewart, Barnard, Pearson, Hasan, & O’Brien, 2006).
7 The DSM-5 also suggests connections between adaptive functioning and decision making (not specific to autism).
8 Wallace et al. (2016) found correlations between executive dysfunction and difficulties with adaptive function. Interestingly, Wallace et al. also found correlations between executive dysfunction in flexibility and anxiety, as well as correlations between executive dysfunction in “metacognition” and depression (metacognition includes initiation, working memory, planning/organization and task monitoring, but planning/organization seemed to be the most powerful predictor of depression). This is important because anxiety and depression are predictors of suicidality, and the finding of correlations among executive dysfunction, anxiety and depression raises the question of whether there might also be connections between executive dysfunction and suicidality.
9 Farmer, Baron-Cohen, and Skylark (Citation2017) proposed that people with ASD make more rational decisions because they are less influenced by context/framing and decoys. But De Martino, Harrison, Knafo, Bird, and Dolan (2008) suggested that the ASD resistance to “framing effect” “reflects a failure to incorporate emotional cues into the decision process, an enhanced economic ‘rationality’ that may come at a cost of reduced behavioral flexibility”(p. 10746). De Martino et al. also noted, “Our SCR results in the context of a high-level decision task supports [sic] convergent evidence of impairment in emotional processing in autism . . . . Paradoxically, although this impairment in processing contextual emotional information protects ASD subjects from the framing bias, leading to more consistent behavior in situations of risk, it may come at a cost of the social, emotional, and behavioral deficits that characterize the condition. . . . These previous results, combined with the SCR data shown here, suggest that the failure to assign emotional salience to contextual cues and consequential lack of behavioral bias in ASD may result from an amygdala based mechanism” (pp. 10749–50).
10 See note 21.
11 When considering possible limitations on voluntariness, we should examine external constraints as well as internal constraints. External constraints that could affect the freedom or voluntariness of EAS requests might include the influence of family members or friends, social stigma (see Moses, Citation2018), lack of needed social supports (including therapies and material resources [Hedley et al., Citation2017]), expressive effects of law (see Schiltz, Citation2018), and societal endorsement of the notion that the lives of people with autism might not be worth living. In the interest of brevity, I focus here on internal constraints that might limit voluntariness. As will become clear, though, some of what I propose would apply to external constraints on voluntariness as well.
12 For additional discussion of depression and EAS, see Emanuel (Citation2005), Levene and Parker (2011), and Rooney et al. (2018).
13 Doernberg et al. (Citation2016) cited a Dutch case report in which one consultant doubted a patient’s competence because his/her “serious depressive disorder” “possibly impeded [the patient’s] free will” and because the patient’s “desire to die could be a symptom of this disorder” (p. 560). The authors also employ the distinction of the request being “a pathologically determined wish vs a rational choice” (p. 562).
14 See Hedley et al. (2017), who reported a European depression rate of 7.6%, citing Casey et al. (Citation2008). However, Casey et al. (Citation2008) appeared to report a depression rate of 8.6% rather than 7.6% (p. 302).
15 However, Mayes et al. (Citation2013) found no correlation between IQ and suicidal ideation or attempts in children with ASD, and Storch et al. (2013) found that children with autism were more likely to have suicidal thoughts and behavior than children with Asperger syndrome. It is worth noting that studies have also found that autistic traits are positively associated with loneliness, and loneliness is associated with increased depression in adults with ASD (Mazurek, Citation2014; cf. Hedley et al., Citation2017, Citation2018).
16 Cassidy and Rogers (Citation2017) reported that adults on the spectrum are more likely to contemplate suicide than people with psychotic disorders, and nearly four times more likely to do so than the general UK population (66% vs. 17%). There seems to be some discrepancy between this latter claim and the 2014 study in which Cassidy et al. reported the same lifetime incidence of suicidal ideation for people with Asperger syndrome (66%) but claim that this rate is nine times higher than the general population. Spiers et al. (Citation2014) suggested that the lifetime suicidal ideation rate among people in the UK might be around 7%, though, and using this figure would support Cassidy et al.’s Citation2014 claim. Hedley et al. (2017) reported general European rates of suicidal ideation at 9.5% (p. 3674).
17 Recall that autistic people who can legally request EAS are less likely to have coexisting intellectual disability, and are therefore at higher risk of death by suicide.
18 However, Storch et al. (2013) found suicidal ideation and attempts to be not significantly higher among anxious youths with ASD than among neurotypical youths without anxiety, and at lower rates than in neurotypical youths with anxiety (p. 2454). It appears to me, though, that Storch et al. might have misunderstood the figures on which these comparisons are made. Storch et al. reported that 11% of children with co-occurring ASD and clinically significant anxiety exhibited suicidal thoughts and behaviors, and cited Wunderlich, Bronisch, Wittchen and Carter (Citation2001) in support of their claim that anxious youths with ASD have a rate of suicidal ideation and attempts similar to that of neurotypical youths without anxiety. But Wunderlich et al. reported a suicidality rate of 11.3 per 100,000 for neurotypical youths, not a rate of 11%.
19 Moses (Citation2018) suggested that “having a disability may be a fundamental cause of suicidal behavior,” which raises the question of whether there might be a direct causal link between disabilities like ASD and suicidal behavior even when there is no mediating depression (p. 429).
20 See, however, Verhofstadt et al.’s (2017) qualitative study of the suffering of their psychiatric patients seeking EAS.
21 Somewhat surprisingly, problems related to emotional regulation and executive function are more common than physical pain in accounts of the suffering that brings autistic people to request EAS. Case report 2017-80 states that the young woman with pervasive developmental disorder not otherwise specified had “emotion regulation problems,” and describes her suffering in the following terms: “The patient . . . was . . . [overwhelmed] by tantrums, crying and [outbursts of anger] that were caused by fear. [She could hardly be assessed because of] rapid overstimulation. . . . She was busy all day suppressing her [symptoms] in order to survive so she would not be overwhelmed and there would be an emotional outburst of anxiety or sadness.” In case 2014-77, it is reported of a man in his thirties with a longstanding diagnosis of Asperger syndrome that “He could react to things in a spontaneous and intense, sometimes extreme, manner. This often led to problems. . . . He was frustrated by his ‘forbidden’ feelings,” and had “poor frustration-tolerance” (trans. Tuffrey-Wijne et al., Citation2018, pp. 7–8). And in case 2013-21, the suffering of an older gentleman with self-diagnosed Asperger syndrome is described in the following terms: “He responded to everything, even the most simple circumstances, with severe panic”; and we are told that “The consultant found that the patient’s personality was very poorly emotionally integrated” (trans. Tuffrey-Wijne et al., Citation2018, p. 5). All three of these reports suggest problems with emotional regulation, which, as we have seen, is both common in people with ASD and can affect decision-making competence.
In addition to emotional dysregulation, we also find evidence of suffering described in terms of problems with executive function, which can affect decision making too. The young woman with pervasive developmental disorder not otherwise specified described in case 2017-80 is said to have “remained fanatically stuck to routines,” suggesting executive dysfunction in the form of cognitive inflexibility, which is very common in the executive function profiles of people on the spectrum; in fact, Wallace et al. (2016) suggested that there is a “peak deficit” or “peak difficulty” with behavioral flexibility among children on the spectrum, and that work on executive function in adults with ASD “demonstrated consistent impairments in cognitive flexibility” (p. 1072). In case 2013-21, we learn that for the older gentleman with Asperger syndrome, “It was also very difficult for the patient to have an overview of how to manage his daily life” (trans. Tuffrey-Wijne et al., Citation2018, p. 5). One wonders whether this aspect of his suffering might derive from executive dysfunction in the area of planning, which is also a common part of the executive function profile for people with ASD (Wallace et al. indicated that “flexibility and planning deficits are considered most characteristic of the EF [executive function] profile in ASD” [p. 1071], and found that problems with metacognition—especially planning/organization—are most associated with co-occurring depression [pp. 1071, 1080]). In case 2014-77, it is reported of the man in his thirties with a longstanding diagnosis of Asperger syndrome that “The patient’s suffering consisted of always being busy in his head with thoughts, on multiple and different levels, and not being able to exclude himself from stimuli or thought processes. He found that exhausting. He really wanted to turn off his thoughts and find rest” (trans. Tuffrey-Wijne et al., Citation2018, p. 7). This suggests difficulties with inhibition, an area of executive function that can also affect decision making. And in case 2016-48, we are told about an elderly woman (90–95 years old) who was only recently diagnosed with autism spectrum disorder: she exhibited “loss of executive function and mental inflexibility,” and she suffered because “She declined any help from others because she wanted to keep doing everything herself—according to rigid rituals—even when that had become almost impossible” (trans. Tuffrey-Wijne et al., Citation2018, p. 11). Her suffering was clearly reflective of cognitive inflexibility, an area of executive function that can affect decision making. Strikingly, in this case report we are also told that “Because of the lack of reciprosity [sic] in communication and the seeming lack of feelings of empathy from the patient, it was difficult to judge whether and why the patient was suffering unbearably” (trans. Tuffrey-Wijne et al., Citation2018, p. 11). This might reflect problems with emotional regulation and communication, or it might actually represent a lack of unbearable suffering. Apparently the matter was resolved to the commission’s satisfaction, though, because we are further told that “Although to the consultant, the patient’s suffering was understandable only to a limited degree, the clearly substantiated explanations of the independent geriatric psychiatrist convinced him that patients with an autism spectrum disorder suffer in a way that may not be directly understandable to others” (trans. Tuffrey-Wijne et al., Citation2018, p. 11, italics added). What is one to say about this? If the suffering of people with ASD is not understandable to others, how can the due care criterion that the suffering be unbearable and “palpable” to the physician have been met in this case or in others involving people on the spectrum? Perhaps only autistic psychiatrists should be allowed to consult in such cases.