Kim Leadbeater MP has proposed a Terminally Ill Adults (End of Life) Bill, details of which have only just been published earlier this week after public pressure – despite the intention to put this Bill to vote at the Second Reading on Friday 29^th November 2024. Only eighteen days’ notice has been given for the public to examine what is at stake: a very stunted window of opportunity in which to investigate and voice concerns. If the Bill passes, it is likely to have catastrophic effects on the ability to uphold the rights of terminally ill people with Down syndrome and those with other intellectual disabilities. The change that is being proposed to UK law is enormous and the approach has been undemocratic. We are now only two weeks away from the deadline, and DSRF UK is joining its voice to a groundswell of concerned advocacy groups for people with disabilities, asking for your urgent attention and action on this matter.

Failures of care for people with intellectual disabilities are widespread

Kim Leadbeater claims that her plan for assisted dying ensures “the strictest safeguards anywhere in the world”. The acknowledged need for such measures testifies to the strong possibility of abuse of assisted dying laws. The first individuals to be affected by failures of safeguards usually belong to groups less able to advocate for themselves, particularly people with disabilities.

This new Bill proposes that ethical norms will be changed, before addressing existing problems that need urgent attention. We recently lived through the exposure of multiple failures and weaknesses in the current healthcare system which significantly failed our community. Inquiries using evidence from witnesses about treatment of people with intellectual disabilities during the Covid-19 pandemic brought disturbing evidence to light that other concerns and assumptions had clearly outweighed human rights and the Equality Act during Covid. Evidence has emerged that there was inappropriate use of DNACPR (Do not attempt cardiopulmonary resuscitation) decisions during the pandemic applied to people with intellectual disabilities, sometimes in the total absence of consultation with either the patient or carers. For reasons that we do not fully know yet – which are likely to include failures of due care – people with intellectual disabilities died at a much higher rate than other people during the pandemic, at a rate of 3-4 times the rate of the general population.

There are important reasons why people with intellectual disabilities would likely become more vulnerable to the abuse of euthanasia laws than many of their peers.

• Risk of Coercion and Autonomy Issues:

Studies indicate that vulnerable populations may be more susceptible to undue influence. This raises ethical concerns around consent for people with intellectual disabilities, and proponents of the Bill have been unable to give reassurances about how it could be known whether or not someone was coerced into assisted dying.

• Need for Supportive Care:

Government reports advocate for enhanced health and social support for disabled individuals (Department of Health and Social Care, 2020), emphasising care improvement over assisted death options. Euthanasia should never be posed as an alternative to due care.

• Societal Impact and Stigmatisation:

Legalising assisted dying can devalue lives with disabilities, which may reinforce negative stereotypes. Ableist measures used to judge quality of life are frequently applied to the disabled, despite the way disabled individuals value their own lives.

A nurse (experienced in end of life care) and parent of a child with DS offered us this insight about projections imposed onto the value of life of patients:

“The parallels between my experience of being told my baby would be born with Down syndrome and those advocating assisted dying is depressingly obvious. I was asked by my consultant if I ‘wanted to keep it as that’s not what anyone else does’. Now I am hearing ‘I wouldn’t want to live like that’ when talking about the elderly and disabled in the Assisted Dying debate. Disrespectful and dehumanising language by those in their ‘prime’ about people they know nothing about. In my experience personally as a mum and professionally as a palliative care nurse, depth and richness is found in those in their twilight years and those who overcome the odds again and again. We would do well to draw near to them in love and support rather than suggest they’d be better off dead.”

Other entrenched patterns of discrimination in the healthcare system continue to be in evidence. A parent of a young woman with DS and autism also reached out to us with serious concern that this Bill would multiply present failures at the expense of people who can’t protest:

“How can we possibly think we are ready to give dignity in dying when we fail so often to give dignity in living? I struggle to see how we can talk about offering dignity when the experiences of many people with learning and physical disabilities, including Down’s syndrome, demonstrate complete lack of understanding of what dignity even means. Having spent time in hospital recently with my medically complex teenager who also has Down’s syndrome & Autism, I witnessed first-hand the lack of basic human dignity afforded to her. Placed in the only cubicle on the ward without a curtain for privacy, my teenager (who is doubly incontinent and requires hoisting) suffered the indignity of being on view to everyone for all episodes of intimate care.  As well as her changes of pads, her post operative sickness was also played out in full view of other patients, relatives and visitors. She was the only learning disabled patient on the ward and was given the least amount of dignity … part of me wondered if my teenager, who is also non verbal, had been placed there deliberately because they knew she wouldn’t (couldn’t) complain … Dignity literally means the state or quality of being worthy of honour or respect. Until we understand how to honour or respect our most vulnerable at their most vulnerable times in life, I don’t think we can claim to know what offering dignity really means … [T]his hastily thought through medical bill that literally is about life or death brings with it a severe dose of the chills.”

We already know that people with intellectual disabilities don’t get the quality of care they need. Amid these unaddressed issues, we cannot naively hope that the implications of a bill like this will be positive for them.

Action is needed now

It is disingenuous for proponents of this Bill to claim that the law will remain limited. Evidence is openly available to show that other countries which began legalising assisted suicide in limited instances have broadened their criterion to include circumstances that would initially have been unimaginable. Many have alerted the public to these realities. Canada is now allowing euthanasia for patients who cite poverty and housing uncertainty as their main reason, and plans to allow assisted suicide for people with mental health conditions; the state of Oregon in the USA has expanded the interpretation of ‘terminal illness’ to include conditions like anorexia, diabetes, hernias and arthritis; and the Netherlands and Belgium have extended the practice to allow euthanasia for children and newborn babies.  It’s not a stretch to see on the horizon a perfect storm of monetary and personnel pressures in the UK healthcare system, added to perspectives that devalue the lives of people with disabilities, culminating in assisted dying justified on the basis of intellectual disability.

DSRF UK stands with other organisations like Disability Rights UK, Not Dead Yet UK, All Wales People First, Liberation, Disabled People Against Cuts, Disability Wales and the coalition of UK DPOs that monitor implementation of the UN disability convention, who have all spoken out to oppose the bill.

If you have a relative, child or grandchild who has DS, we strongly encourage that you use your voice now to protect their rights far into the future. We can’t afford to wait for another public health emergency like the pandemic to occur before we attempt to fix the cracks in the system that caused serious and disproportionate harm to people with disabilities. We also can’t afford to allow laws to be put in place that will lead to a climate of further devaluation and disposability of the lives of people in our community.

We urge you to take action on this issue before it is too late.

The charity ‘Not Dead Yet’ has made an excellent template of a letter available to send to your MP to protest this bill, and ask that MPs stop it from being rushed into law: https://notdeadyetuk.co.uk/get-involved

You can find the name and email address of your local MP through this straightforward link on the UK Parliament website. Simply enter your postcode to get the details of the MP for that area: https://members.parliament.uk/FindYourMP