International Case Studies on Legalised Assisted Dying, with relevance for Down syndrome community

“People with Down syndrome and other disabilities are already not taken seriously and it is difficult to have our voices heard. I am worried that in years to come when my mum isn’t here any longer, I may be pressured to end my life when I didn’t want to because I may be seen as a burden on the health service if they don’t want me any more.”

 – Bethany Asher, Award winning actor, Patron of the Down Syndrome Research Foundation UK, and Advisory Member of the National Down Syndrome Policy Group

“We are writing as Labour MPs with concerns about the detail of the Terminally Ill Adults (End of Life) Bill, which completed its three days of oral evidence last week. … Whilst the Bill Committee heard oral evidence from 50 expert witnesses last week, they were unfortunately not able to hear from … any witnesses from jurisdictions who had introduced assisted dying and who had concerns about it. … Many members, including members of the committee, felt that overall the list of witnesses did not in fact reflect a wide range of different views, but was weighted towards voices that were known to be supportive of the Bill.”

– Joint Letter to MPs: Jessica Asato MP, Antonia Bance MP, James Frith MP and Meg Hillier MP, 6^th February 2025

There are no shortages of expert voices prepared to share their serious concerns about Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill on Assisted Dying. However, by deliberate choice of the Bill Committee, the majority of those voices have recently been excluded from the witness list. As the Bill progresses through Parliament, it’s clear that certain people are being spoken over, and it is pre-determined that others will not have the chance to tell their personal story or share their professional insights. An avoidance of discussing trends and insights from countries which already have euthanasia is just one example of omission of relevant evidence from public scrutiny.

We believe that it is enormously important to look at the evidence available and consider how legalisation of assisted dying could change the outlook for individuals with Down syndrome as they age or need medical treatment and care.

Questions about Euthanasia and Down syndrome

Readily available data shows that assisted dying / euthanasia laws have already directly and indirectly affected the outlook for people with intellectual disabilities in other countries. In various countries we looked at, the scope of assisted dying laws was extended over time to include instances that would have been thought unethical to begin with. While it’s challenging to track the extent of the effect on people with Down syndrome due to poor availability of data on DS as a specific demographic, the following information is highly relevant to our community. We asked these questions:

• Have other countries seen cases of assisted dying among people with intellectual disabilities? (Netherlands case study)
• What about euthanasia related to illnesses which people with DS commonly develop as they get older? (Netherlands case study)
• What if the availability of social care services and palliative care is more limited than the offer of assisted dying? (Canada case study)
• What if there are discriminatory attitudes towards the value of life of people with intellectual disabilities? (Belgium case study)

The evidence we found presents a disturbing outlook.

Euthanasia in the Netherlands

Year Legalised: 2002

Legal reasons for eligibility: Terminal illness, unbearable suffering (physical or psychological), and voluntary request.

Percentage of deaths in 2023: 5.4% (9,068 out of 169,521 people who died in the Netherlands in 2023: around 1 in 19)

Intellectual Disability and Autism Euthanasia Cases – Netherlands case study

• Some people with intellectual disabilities have made use of the Assisted Dying law in the Netherlands. A study of euthanasia cases in the Netherlands involving intellectual disabilities and autism spectrum disorder were analysed to investigate if any particular difficulties had arisen with due care criteria for these patients.
• The analysis showed problematic aspects affecting consent, including that some physicians had struggled to understand the patient’s perspective, that some time frames were brief, and that limited physician-patient meetings may not have been enough to make a decision this serious.
• Capacity and autonomy tests in these cases did not seem to be stringent enough for the needs of patients with intellectual disabilities, and the due care criteria that was applied was insufficient as a safeguard for the specific needs of these patients.

Alzheimer’s and Assisted Dying – Netherlands case study

• Alzheimer’s patients are eligible for Assisted Dying in the Netherlands
• People with Down syndrome are 6 times more likely to be diagnosed with dementia than the rest of the population, from the age of 65 and older. Worldwide data indicates that about 55% of people with Down syndrome aged 50-59 and over 75% of those 60+ are diagnosed with Alzheimer’s, compared to only 10-15% of the general population aged 65 and older​.
• The number of people euthanised in the Netherlands after being diagnosed with dementia in 2023 increased to 328 from 288 in 2022 (a 8% increase)
• Dementia as an eligible condition is already problematic with regards to issues of consent. A research paper published in 2020 found more than 52% of Dutch GPs with experience of euthanising a dementia patient felt an emotional burden from the experience. Over 47% felt uncertain about the mental competence of the patient at the time of their euthanasia, and a further 9% said they felt pressured by the relatives of the dementia patient to euthanise them.

Euthanasia in Canada

Year Legalised: 2016

Legal reasons for eligibility: Serious and incurable condition causing intolerable suffering; expanded to include mental illness in some cases from 2025.

Percentage of deaths in 2023: 4.7% (15,300 out of 320,000 people who died in Canada in 2023 – almost 1 in 20 deaths)

Assisted Dying as an alternative to Supported Living – Canada case study

• In Canada, people with disabilities are likely to be actively offered Assisted Dying as an alternative to disability supports, presented as a ‘therapeutic option.’
• People with intellectual disabilities will be at grave disadvantage and will be unlikely to navigate these obstacles.
• Analysis has highlighted the dilemma that people with disabilities are placed in:

“… the key issue … is the risk EAS [Euthanasia and Assisted Dying] poses to disabled persons when disability supports which would allow them to live a life, they consider worth living are not readily available. This risk is arguably heightened in the context of austerity and concern with rising health and social care cost … one must question how many other people with disabilities like Sean Tagert, out of despair, a lack of knowledge about other options or simply because they are weary of the struggle, will quietly chose to die by EAS.”

• These concerns about Canadian euthanasia laws have also been raised by the UN. The UN Special Rapporteur on the rights of persons with disabilities, after her visit to Canada, was “extremely concerned” about the implications of assisted dying legislation on people with disabilities after hearing multiple complaints. In her report she states: “I urge the federal government to investigate these complaints and put into place adequate safeguards to ensure that persons with disabilities do not request assistive dying simply because of the absence of community-based alternatives and palliative care.”

Euthanasia in Belgium

Year Legalised: 2002

Legal reasons for eligibility: Unbearable physical or psychological suffering due to incurable conditions, voluntary request.

Percentage of deaths in 2023: 3.1% (3,423 out of 111,255 deaths: 1 in 32)

Disability can be enough to qualify for euthanasia – Belgium case study

• There are already indications that negative attitudes in the Belgian healthcare system mean the lives of people with Down syndrome and other disabilities can be viewed as inherently less worthwhile. Belgium has been criticised by the UN Committee in the Rights of Persons with Disabilities for “societal perceptions that people with Down syndrome and other disabilities have less value than other people”
• People with disability “as the sole underlying cause of suffering” can access assisted suicide in Belgium.
• There is continual steady increase and normalisation of euthanasia in Belgium, and if that trend continues, more groups of vulnerable people will likely be encouraged in that direction.

We highlight these cases to illustrate that people with Down syndrome become less protected in environments where assisted dying has been normalised. A person with Down syndrome who may not have full autonomy is likely to face higher risk of being considered more eligible for euthanasia by other people, while also being less able to find satisfactory care as they age.

It’s virtually impossible to design safeguards that can harmonise a perceived ‘right to die’ with a more fundamental right to care that supports life. As Bethany Asher points out, people with Down syndrome already experience the difficulty of having their voices heard in decision making processes that will affect them. The issues they will face in the future in relation to assisted dying are still not being discussed among lawmakers with the urgency and prominence that is necessary.

How you can take action:

We urge that you consider the profound effects that this law could have on our community and lift your voice to amplify these issues. While there is still an opportunity, we ask that you get involved to pull the brakes on the Assisted Dying Bill. There are many ways you can get involved:

1. Open a conversation with your MP about this issue and tell your MP how this could negatively affect you or your family. You can find your MP’s contact details here on the UK Parliament’s MP Finder tool:

https://members.parliament.uk/

2. To contact members of the House of Lords and let them know your perspective on this, please follow the steps here:

https://www.parliament.uk/business/lords/whos-in-the-house-of-lords/get-in-touch-with-members/

3. If you have been personally affected by these issues, you can also share stories here:

https://carenotkilling.org.uk/take-action/tell-us-your-story/