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

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 that I am publishing my full presentation to the Select Committee on my blog. It was followed by 40 minutes of questioning, which you can watch here if you understand French (as it’s dubbed), or on the video below without the dubbing (introduction and questions in French, but my presentation and my answers to questions in English).

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

Thank you very much for inviting me to present evidence to this Committee.

My name is Irene Tuffrey-Wijne. I am a professor of Intellectual Disability and Palliative Care at Kingston & St George’s University in London, UK.

In the next 20 minutes:

  • I am going to tell you who I am and what work I do;
  • I am going to define intellectual disability and autism;
  • and then I’m going to give you the evidence from my research as to what happens to people with intellectual disability or autism in a situation where the law has been changed to allow euthanasia for them.

But before I do that, I want to put before you these fundamental questions:

  1. If there is a change in the law, where does your duty lie to make sure that the changed law is safer and better for your citizens than if there is no change in the law?
  2. What is your duty of care to citizens who have a disability? What is your duty of support and suicide prevention, trying to improve their quality of life, and at what point do you abandon those efforts and offer them an assisted death?

My area of expertise

I speak to you today from my somewhat unique perspective as an expert in end of life care for people with intellectual disabilities or autism, and the world’s first professor in this subject. I would like to set out both the scope and the boundaries of my expertise. I am a nurse with extensive clinical experience in both intellectual disability and palliative care provision. For the past 20 years, I have conducted research into the experiences and needs of people with intellectual disabilities at the end of life.

With regards to the assisted dying debate, it is also important to point out that I am a citizen of the Netherlands and lived there until I moved to the UK in early adulthood. I have detailed research-based insight into both the laws and the practice of euthanasia in the Netherlands in relation to people with intellectual disabilities or autism, which I will draw upon for this presentation.

I am not in a position to comment on assisted dying legislation for people with psychiatric illness, or indeed for any group of patients or people other than those with intellectual disabilities or autism.

Definition of intellectual disability and autism

First of all, let me clarify what it means to have an intellectual disability or autism.

Intellectual disability is a lifelong condition that begins before adulthood, and results in impaired intelligence. People also have a significantly reduced ability to cope independently. It is a very broad spectrum. People will need varying degrees of support throughout their lives.

Autism spectrum disorder is a complex and usually lifelong developmental disorder. It is characterised by persistent difficulties with social communication and social interaction. Autistic people often find more difficult to build and maintain friendships. They also find it difficult to filter information, and can be over-sensitive to sounds or other sensory stimuli. Autistic people can find it very difficult to cope with changes of routine.

Although autism spectrum disorders are common among people with intellectual disabilities, not all people with autism have an intellectual disability. Asperger’s syndrome, for example, is a type of autism that is characterised by average or above-average intelligence.

Research evidence

Now let me tell you about my research. The aim of this presentation is not to promote a particular side of the assisted dying argument, but to contribute to the debate by discussing the implications, including the risks, for two particularly vulnerable patient groups. I am going to focus on three things:

  1. the nature of the “intolerable suffering” that led to euthanasia requests from people with intellectual disabilities or autism in the Netherlands;
  2. capacity assessments;
  3. and the nature of healthcare inequalities internationally.

I will use the term “euthanasia”, as that is used in the Netherlands. It means a physician-administered death in response to a request from a patient to terminate their life. Whilst physician-assisted suicide is also possible, in over 96% of assisted dying cases, patients in the Netherlands opt for euthanasia rather than assisted suicide.

Case reports from the Netherlands

We analysed 38 case reports of people who had mild intellectual disabilities, autism, or both, and who died through physician-administered euthanasia between 2012 and 2020. These case reports are publicly available on the Dutch Euthanasia Review Committee website. As you will know, all cases of euthanasia in the Netherlands are reported to a Review Committee, who scrutinise them – typically over 6000 a year, of which an average 80 are published each year, with the specific aim to show how the committee applied and interpreted the legal due care criteria, and how they dealt with particular challenges.

The Dutch system of transparent reporting of euthanasia cases is unique in the world. In my view, this is essential in ensuring scrutiny and patient safety.

In our analysis, we focused on the question whether any particular difficulties arose when the euthanasia legal due care criteria were applied to patients who had an intellectual disability or autism spectrum disorder.

I can refer you to our published papers if you would like to know more details of our study, or indeed of the Dutch due care criteria and systems for scrutiny.

Intolerable suffering

My first examples illustrate my findings and considerations around the question of intolerable suffering without prospect of improvement, sometimes also translated as “hopeless” (this is part of the Dutch due care criteria).

In many cases, the suffering was described as not being able to keep up in society, feeling excluded from it, an inability to maintain relationships, depression, sadness and distress at not being the person they would like to be, and difficulty in coping with changing circumstances. People with autism had difficulty coping with what they experienced as an overload of stimuli, such as noise.  For example, here are some quotes (the translation from the Dutch is mine). This is a man in his 70s with mild intellectual disability and autism who died through euthanasia in 2020:

Because of his autism, he found it increasingly difficult to cope with the changes around him. As he got older, he became less able to cope and his anxiety increased, eventually leading to intolerable suffering.

And a man in his 30s with Aspergers, who died in 2014:

The patient suffered from the fact that he had a great need for closeness with others whilst he couldn’t maintain long-lasting social contacts. This was because he misjudged interactions and was inclined to behaviour that crossed boundaries.

The difficulty here is that these patients’ suffering arose not from symptoms of an illness, but from the characteristics of autism or intellectual disability itself – as was the case for those who were highly dependent, had difficulties with social functioning, difficulties in coping with social circumstances, or a tendency not to cooperate with treatments. In a number of cases, physicians thought that further attempts at treatments or interventions were futile, as the patient wouldn’t cope with it, or would simply not cooperate.

Intellectual disability, with concomitant difficulties with social communication and relationships, could make it more difficult for patients to cope with the changes that come with ill health and ageing, or to weigh information, or to understand and accept possible alternatives.

In many of the case summaries, the term ‘suffering’ was used to describe the normal variations in behaviour and perceptions seen in people with autism which are an inherent part of the person. I could give you many more examples of this. Statements about the lack of prospect of improvement, such as “intractable symptoms”, “refractory to treatment” and “palliative treatment”, are meaningless in the context of lifelong disability.

So, one question I am raising is:

To what extent do the characteristics of certain groups of people make them eligible for assisted dying?

Or is the suffering described in these case reports in fact a result of society’s failure to accommodate and support the needs and characteristics of people with autism or intellectual disability?

Capacity assessments

My next examples are to illustrate the difficulties with assessments of the patient’s decisional capacity and competence. One was a woman with intellectual disabilities in her 30s who had a brain tumour in childhood, which had been in remission for 10 years. She was now suffering from unexplained physical symptoms, which one psychiatrist thought might be due to sadness that her life wasn’t what she had hoped. He found it difficult to assess her capacity, because of her coping style. This consisted of crying or indicating that she didn’t know, which made it very difficult to ask further about her euthanasia request.

There was disagreement between physicians about this patient’s capacity, which was not unusual in case reports where the patient had an intellectual disability. But she was granted euthanasia in 2020, because of the consistency of her request and the fact that she could describe alternatives to euthanasia. This is also not unusual.

A woman with intellectual disabilities in her 60s suffered from tinnitus. Her doctor had explained to her that most people learn to live with this, but, and I quote:

Because of her primitive thinking abilities, the patient was focused solely on eliminating the tinnitus completely. Once she realised ‘I will never get rid of it’, her suffering became intolerable and hopeless to her, and she was then only focused on euthanasia… She remained focused on her euthanasia wish, partly due to her low level of intelligence.

A persistent request does not necessarily imply capacity.

It might even be indicative of a lack of capacity, if the patient’s intellectual disability leads to difficulties in considering or weighing up alternatives. If stringent capacity assessment criteria were to be applied in this case, it may well be that the patient’s inability to appreciate the significance of the information in relation to her own situation, and to weigh up treatment options, would render her incapable to make a euthanasia decision, however persistent her request.

This takes me to the most commonly used and influential model for assessing whether a patient has the capacity to exercise autonomy in making healthcare choices: the MacArthur model, which consists of four abilities (also known as the “Appelbaum criteria”):

  • to understand the illness, the various treatment options and their potential benefits and risks;
  • to appreciate the significance of that information and how it applies to themselves in their personal situation;
  • to weigh up options using reasoning and logic;
  • and to communicate a choice.

The difficulties many people with intellectual disabilities have in rationally manipulating information with regard to their situation, the consequences of their decision and the possible alternatives make them particularly vulnerable when the bar for capacity assessment is not set high. Of all four Appelbaum criteria, appreciation ability is undoubtedly the most difficult to understand and measure.

The problem is that impairment of decision-making capacity lies on a continuum, but the judgment of decision-making capacity is an all-or-nothing concept (either the patient has capacity to take a particular decision, or he doesn’t).

Where on the continuum the cut-off point for competence lies, is therefore a matter of judgement.

Many, including Appelbaum himself, have argued that the stringency of capacity tests should vary directly with the seriousness of the likely consequences of the patient’s decisions.

I would argue that euthanasia should only be open to those with a high degree of mental capacity to make such a request. For a life-or-death decision such as this, the bar for capacity should be set high. I am happy to discuss this further with you if you wish.

Health and social care inequalities

Finally, I want to point out that we have to be extremely conscious of the possibility of diagnostic overshadowing, where there is a negative bias impacting on a clinician’s judgement. There is strong evidence from around the world that people with intellectual disabilities or autism have been poorly treated and even died unnecessarily, due to poor decision-making by healthcare professionals. Numerous reports in recent years have suggested that the lives of people with an intellectual disability are valued less across society, and that their short life expectancy results from inappropriate value-laden decision-making by healthcare professionals.

When we look at the Dutch case reports, it was mostly accepted by doctors that suffering could consist of psychological pain, dependency, social isolation, loneliness and a lack of coping mechanisms that were a result of intellectual disability or autism. There were also several examples of rigid thinking, where the patient was fixated on the idea of euthanasia and unable or unwilling to consider alternatives. In the Netherlands, where most citizens are aware that they can ask for euthanasia if they feel their suffering is hopeless, it is inevitable that people with intellectual disabilities or autism can ask for it too; and as equal citizens, they have a right to do so. But 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.

If the “intolerable suffering” does indeed result from living with the limitations of intellectual disability or autism spectrum disorder, then it is inevitable that it is hopeless. This, too, is evident from the case reports. In cases of persistent treatment refusal, or persisting problems despite having tried many different approaches and treatments, physicians tend to reach the conclusion that euthanasia is the only remaining option for the patient. In fact, many of the case reports were clear in their observation that autism is not a treatable condition, and therefore, the patient’s inability to cope with life was not treatable either, and therefore, euthanasia was a suitable option.

Bearing in mind the poor record of decision-making by healthcare professionals about people whose capacity is in question, who behave or communicate differently, or whose lives may seem to lack quality, I question whether such professionals are in fact the right people to make decisions about eligibility for assisted dying. Of course physicians can write clinical reports about the condition in question, but I would argue that the decision about eligibility should be one made in a legal setting, such as a court, after having heard evidence from the health professionals. There are many precedents for using the courts to make weighty decision, such as keeping a person in hospital or moving them to a residential setting against their will.  This would provide prospective monitoring, i.e. before, not after, the death of the patient, and improved safeguarding.

I am in no doubt that the patients in the Dutch case reports did indeed suffer deeply and consistently. However, we know that people with disabilities experience severe inequalities in opportunities and in health and social care provision, which may well play a part in their situation being “hopeless”. Current society is not a level playing field, where everyone has a full range of life choices and can make autonomous choices about them. This makes it perhaps all too easy for people to request euthanasia, and to be granted such a death as a “way out” of painfully difficult situations and circumstances, rather than addressing underlying issues of inequality and a lack of adequate support for people with very complex needs.

I am not convinced that euthanasia was a suitable solution in most of the cases we reviewed.

I am going to come back to my initial question. You will have to be able to answer those two questions with clarity if you are going to make a sound decision.

Is changing the law safer and better for your citizens than not changing the law?

And what is your duty of care to your citizens who have disability?

At what point do you abandon your efforts to improve their quality of life and offer them an assisted death?

Thank you for listening, and I am happy to answer your questions.

 

Full details of the research cited in this presentation can be found here:

Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S (2018) Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012-2016). BMC Medical Ethics 19:17

Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S. (2019) “Because of his intellectual disability, he couldn’t cope.” Is euthanasia the answer? Journal of Policy and Practice in Intellectual Disabilities. 16 (2), 113-116

 

 

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

  1. Thank you Prof Tuffrey
    You asked “is the suffering described in these case reports in fact a result of society’s failure to accommodate and support the needs and characteristics of people with autism or intellectual disability?”
    An emphatic yes!

  2. I will make a few comments.

    You write:

    ‘Or is the suffering described in these case reports in fact a result of society’s failure to accommodate and support the needs and characteristics of people with autism or intellectual disability?’

    I think, a more relevant question is:

    ‘Or is the suffering described in these case reports in fact a result of society’s inability to accommodate and support the needs and characteristics of people with autism or intellectual disability?’

    More specifically, for the individual concerned, will the suffering almost certainly continue, because of ‘society”s inability’ to remove the individual’s suffering by providing support to the individual?

    I strongly support this:

    ‘Finally, I want to point out that we have to be extremely conscious of the possibility of diagnostic overshadowing, where there is a negative bias impacting on a clinician’s judgement. There is strong evidence from around the world that people with intellectual disabilities or autism have been poorly treated and even died unnecessarily, due to poor decision-making by healthcare professionals. Numerous reports in recent years have suggested that the lives of people with an intellectual disability are valued less across society, and that their short life expectancy results from inappropriate value-laden decision-making by healthcare professionals.’

    And provided we do not – for assisted suicide of individuals whose capacity is clearly not in doubt – argue that in the general case courts should always be involved in assisted suicide, I agree with you here:

    ‘Bearing in mind the poor record of decision-making by healthcare professionals about people whose capacity is in question, who behave or communicate differently, or whose lives may seem to lack quality, I question whether such professionals are in fact the right people to make decisions about eligibility for assisted dying. Of course physicians can write clinical reports about the condition in question, but I would argue that the decision about eligibility should be one made in a legal setting, such as a court, after having heard evidence from the health professionals. There are many precedents for using the courts to make weighty decision, such as keeping a person in hospital or moving them to a residential setting against their will. This would provide prospective monitoring, i.e. before, not after, the death of the patient, and improved safeguarding.’

    I will also comment on this:

    ‘This takes me to the most commonly used and influential model for assessing whether a patient has the capacity to exercise autonomy in making healthcare choices: the MacArthur model, which consists of four abilities (also known as the “Appelbaum criteria”):

    to understand the illness, the various treatment options and their potential benefits and risks;
    to appreciate the significance of that information and how it applies to themselves in their personal situation;
    to weigh up options using reasoning and logic;
    and to communicate a choice.’

    That looks very similar to the GMC’s description of the process of Informed Consent, and the Mental Capacity Act’s description of the process of capacitous consent (section 3(1)). The GMC has pointed out – quoting a judge – that in fact a capacitous patient can accept or refuse an offered treatment ‘for no reason at all’. It is not clear to me, that even obviously capacitous patients would necessarily ‘pass’ the test of ‘using reasoning and logic’. I am not religious myself – does making a decision based on a religious belief, satisfy ‘using reasoning and logic’?. Don’t most of us, in reality use a sort of ‘fuzzy decision making’ – we are not computers.

    I think your piece is a good one, and this is a very difficult issue to address.

  3. Pingback: BLOG: Is it possible to make assisted dying laws safe for people with intellectual disabilities or autism? | Dying Well APPG

Leave a Reply

Your email address will not be published.