Wednesday, December 02, 2015

Notes on autism and assisted dying

In the Carter decision, the Supreme Court of Canada struck down the existing prohibition against physician-assisted dying, and gave the Canadian government until February 2016 to craft a legislative response. In response, an expert panel was created; see more information about the panel, Carter, and assisted dying here. Very late in the panel's consultations, I was asked to provide comments about assisted dying and autism. My very brief submission, possibly too late to be considered, is below, along with a few further notes. 

My purpose is not to take any position on the issue of physician-assisted dying, but to call attention to the situation of autistic adults in Canada with respect to this issue. 
Autistic adults will be affected by laws on physician-assisted dying in as many ways and in as many roles as will nonautistic adults. For example, autistic adults may be patients or physicians and as such may variously wish to obtain, to avoid, to provide, or not to provide assisted death. 
What sets autistic adults apart is their difficult situation in Canada when it comes to basic scientific, medical, and ethical standards—standards which are often described as universal. These are the standards on which the Supreme Court of Canada (SCC) Carter decision implicitly and explicitly depends. The decision’s premise is that these standards will indeed benefit and protect everyone, whatever their role or wishes with regard to assisted dying. 
While this premise is sound for the nonautistic population, for autistics in Canada it fails and must be rejected. Autistics have long been denied the “universal” basic standards on which Carter depends. There is a long history of scientific and ethical standards being lowered or discarded in autism research, a long history of unfounded but dominant claims that basic standards are somehow bad for autistics, or are too difficult to apply, or are not merited by this population. Lower standards for autistics than would be acceptable for anyone else have spread well beyond research and now permeate autism practice, advocacy, jurisprudence, journalism, policy, and politics. 
In Canada there is no organization which promotes basic scientific, medical, and ethical standards for autistics. To the contrary, any suggestion that standards for autistics should resemble those for everyone else has been strongly opposed. This is reflected in public policy and generally in how autistics are regarded and treated in every aspect of their lives. 
Under the dominant low standards, autism is viewed as grievous, as irremediable (beyond a tiny early window of opportunity), as causing enduring intolerable suffering, as an appalling burden on families and society. Media stories have mentioned individuals in Belgium euthanized for autism (Lerner & Caplan, 2015). A recent paper, while very preliminary, found that autistic adults seeking assisted dying are not mere rumors (Theinpont et al., 2015). 
What the SCC’s Carter decision means with respect to autism is unclear. We are not in Belgium’s “very different medico-legal culture.” But in Canada autistics are subject to “very different” and profoundly lower standards than the court envisioned. This has consequences for autistics even if autism itself is not or does not become a condition for which assisted dying is granted. 
Adults diagnosed as autistic disproportionately experience suicide, suicidality, and premature death (Lai & Baron-Cohen, 2015; Hirvikoski et al., 2015), plausibly as the predictable outcomes of being subject to unacceptably low standards. It remains to be seen how enduring intolerable suffering will be assessed and treated in these circumstances, which the SCC did not envision. The obvious solution, the only one consistent with the Charter, is to accord to autistics the universal scientific, medical, and ethical standards they are currently denied. So long as this does not happen, autistics in Canada do not fall under the overarching premise of the Carter decision. In all aspects of assisted dying, they will face hazardous, onerous, and unacceptable disadvantages. 
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2015). Premature mortality in autism spectrum disorder. The British Journal of Psychiatry, pii: bjp.bp.114.160192 
Lai, M. C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013-1027. 
Lerner, B. H., & Caplan, A. L. (2015). Euthanasia in Belgium and the Netherlands: On a slippery slope? JAMA Internal Medicine, 175, 1640-1. 
Thienpont, L., Verhofstadt, M., Van Loon, T., Distelmans, W., Audenaert, K., & De Deyn, P. P. (2015). Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering from psychiatric disorders: a retrospective, descriptive study. BMJ Open, 5(7), e007454.

Submitted to: External Panel on Options for a Legislative Response to Carter v. Canada, November 23, 2015, by Michelle Dawson, CETEDUM, University of Montreal  

Further notes 

For more about autistics being denied basic standards in research, and some consequences of this, see my recent guest post for Autistica on history, segregation, and autism. For the current complicated situation regarding assisted dying in Quebec, see recent update.

Postscript: On Dec 3, the Canadian government asked the SCC for an additional six months to respond to Carter. For further updates, see the comments.