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.


Nicole C said...

Euthanasia in Canada really concerns me. No laws means that medical care will resemble veterinary medicine. Far too many animals are euthanized for being "surplus", "pests", the "wrong" breed, or are behaviour challenged. Even some "no kill" shelters will euthanize for dog aggression, even though working on the dog's sensory issues would be a better approach.

Many autistic people get depressed, and, like animals, are "othered". I find it fascinating that most cure autism research is done on animals, showing a parralel with ableism and speciesism. As a vegan autistic person, I find this interesting.

Euthanasia, if it is to be legal for humans, should be restricted to terminal cases. Depression is common in othered communities, including autism. I know of one young man who is autistic and bipolar, and he has been in the hospital since September. I certainly hope patients like him will not be euthanized in the future.

Is there still time to write to the Prime Minister about euthanasia?

Michelle Dawson said...

"Is there still time to write to the Prime Minister about euthanasia?"

Yes. The Canadian government still has to come up with a response to the Carter decision. Whether they will get an extra 6 months to do so, as they have asked, is not yet known.

The panel to which I submitted my comments (too late it seems) sent their report to the Canadian government on Dec 15, see the update here, but this report isn't yet public.

Meanwhile, Quebec's new end of life care law, which permits doctor-assisted dying and requires institutions to provide this as a service, has stood up under appeal ergo is still the law here. You can find more information about Quebec's law, including a link to its text, here.

And you can find summaries of existing laws on assisted dying, including their "eligibility criteria," here. The wording of Quebec's law has been taken to mean that terminal illness is among the eligibility criteria for assisted death. But this does not seem to be the case in the Carter decision.

In any case, stay tuned. There is a lot still to be decided.

Michelle Dawson said...

On Jan 15, Canada's Supreme Court gave the federal government a 4-month extension to pass a Canadian assisted dying law, and allowed Quebec's end of life care law (see my comment above for more info) to stay in effect.

Michelle Dawson said...

And...the panel's report is available online.

The only mention of autism comes from an ASAN submission, in which it seems ASAN wants to remove autistic rights and freedoms using the notwithstanding clause.

In total contrast, and could this be irony, the possibly 1st ever Canadian op-ed by an openly autistic person (me) played on the notwithstanding clause--that was back in 2003. In my youth.

You can find a bit on how the notwithstanding clause has been used in the past here.

Finally, while Quebec's end of life care law is currently in place, many (besides me) have noticed that it may be too restrictive vs the Carter decision.

Echolalia Production said...
This comment has been removed by the author.
Michelle Dawson said...

Hi Amik Nafte,

Let's see.

1. There is nothing in my work or anything I've done which supports what you do in any way. I think what you do is egregious.

2. If that isn't clear, I completely oppose the rock-bottom standards you are imposing on autistics.

3. If that still isn't clear, a bit more. Like all other humans, autistics are harmed by bad science and bad ethics. And you are promoting extremely bad science and bad ethics as what autistics deserve. No thanks.

4. If that still, still isn't clear, demanding far lower standards for autistics than would be acceptable for anyone else, as you are doing, is in my view a form of segregation and a human rights issue.

5. And stop misrepresenting and misusing my work to harm autistics, please.

6. In case that's somehow still, still, still not clear, here's a relevant quote:

"Instead autism organizations and advocacy leaders, including those known for attacking each other, agree when it comes to segregating autistics this way. In their documents, policies, recommendations, and lobbying, they all promote autism-specific low standards—especially in interventions. Ignoring the strong lessons of history, they all support the segregation of autistics from the basic rights and standards which protect and benefit everyone else. Their high-profile disputes are, instead, over which kinds of bad science and bad ethics should be foisted on autistics."

7. I hope that's clear.

Echolalia Production said...

Read carefully and be just.

Michelle Dawson said...

Amik Nafte ("Echolalia Production") deleted the 12:58 PM comment I responded to. Well, that's clear. Leaving my response up for now.

Echolalia Production said...

by now you've had an ample time to carefully review our site and discover what we really stand for. Responding to your pointed message our team has also conducted a thorough review, to make sure that our message is clear and that it is not misrepresented by poor wording or other ambiguities. Some wording will be improved as a result but not the message we intended to convey. The message is that -Together we are stronger' and that we must act together to get things changed. i truly hope that this message will Reach you.

I have removed the original comment, because it was an invitation for you to join us. This invitation for the time being is on hold. I have a great respect for what you've accomplished in the past; it required not only intelligence but also courage, and that is why I've attempted to reach you. The single reference to you court intervening has been removed from our site at your request. I've also examined the work you do now. You are welcome to write to me if you'd like to know the opinion of a fellow autistic. So that is where we may end. Yet if at some point in time you may open up to it, then don't hesitate to reach out.


Krze said...

My concern is that I may be denied my wishes to die simply because I am on the spectrum.

I was diagnosed with Asperger's in 2008, I am now soon to be 25. I am an intelligent man, I am fully competent, I was on the honour roll twice in high school, got a $1000 entrance scholarship to college, I have a full drivers license, and even a firearms license which required taking a firearms safety course and passing a test, passing an extensive RCMP background check, etc.

It is clear to anyone that even just talks to me for a few minutes that I am clearly intelligent, competent, know what I am talking about, and what is going on around me, and what I am doing.

As an Atheist or non-believer, whichever you prefer to use, I take matters of life and death extremely seriously, because I have come to terms with my own morality and I do not lie to myself, I know that death is final.

I am a very big believer in the principles of individual freedom and personal sovereignty.

I have already decided that If I ever am in a situation because of disease, pain, etc with no foreseeable end where I deem the quality of my life to no longer be worth living, that I would desire death, and an assisted death if I am unable to do it completely on my own.

Do you have any idea of how those who are (to use an informal term) "extremely high-functioning" would be affected by the law as it stands now, or by the "not withstanding" clause you mention?

Michelle Dawson said...

So a lot has happened since the last updates I posted.

Canada passed an assisted dying law in 2016. But parts of that law and provincial laws were struck down by a Quebec court decision in Sept 2019, for being too restrictive. So far as I know, that decision has not been appealed.

Federal and provincial governments have 6 months to change their laws to conform with the decision. In the meantime, existing laws remain in place.


How this might affect autistics is unclear until the new laws appear.