Is it possible to make assisted dying laws safe for people with intellectual disabilities or autism?

by Irene Tuffrey-Wijne, Professor of Intellectual Disability and Palliative Care

Click here to view Professor Irene Tuffrey-Wijne’s blog-post online.

A courtesy French translation of the following blog post is available online.

My quick answer to that is: If it is, then I have yet to hear about it. Let me explain.

Here’s a real-life (or rather, real-death) situation.

A woman in her 70s had stomach cancer. She had part of her stomach taken out, which quite probably cured her. But now she had to learn a new food routine – lots of small meals, rather than the three square meals a day she was used to.

She couldn’t cope with this. The woman was autistic and probably had an intellectual disability as well. She lived in the Netherlands and asked for euthanasia, which was granted. She died in 2020. The report on the Dutch Euthanasia Review Committee website explains why this fell within the legal euthanasia due care criteria of “intolerable suffering without prospect of improvement”:

The physician has clearly described why he was convinced that the patient’s suffering was hopeless and there was no other reasonable solution. The inability of the patient to cope with her new limitations stemmed from her Autism Spectrum Disorder, which was not treatable.(Case 2020-114)

This story is not unique.

I have blogged about this before. I am haunted by it. In 2017 and 2019, we published papers on our research into Dutch euthanasia cases that involved people with intellectual disability or autism (see here and here).

It’s my least favourite research topic, and yet it is arguably one of the most important, because the implications are so enormous.

It is probably these papers that led to a request for me to present evidence to the Quebec Select Committee on the Evolution of the Act respecting end-of-life care.

(This is a euphemism if ever there was one. Much along the lines of the Dying with Dignity Bill. I absolutely prefer the Dutch straightforward approach. Theirs is called the Termination of Life on Request and Assisted Suicide Act, which at least does at is says on the tin.)

However much I wish this topic would simply go away, I felt it was my duty to inform the Quebec Select Committee of the facts. If you are contemplating expanding assisted dying laws, then you need to know what the implications are for your most vulnerable citizens.

The wonders of Teams meant that I didn’t have to fly into Canada, but could talk to the Committee this afternoon from the comfort of my own home, with a translator speaking miraculously into my ear via headphones and a phone app.

It’s so important taht I am publishing my full presentation to the Select Committee on my blog. It was followed by 40 minutes of questioning, which should become available to watch online soon. (Now available)

Here it is:

Presentation to the Quebec Committee on the Evolution
 of the Act respecting end-of-life care
25th May 2021

(English version following French)


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