As the Senedd rejects assisted dying, those with mental illnesses still face high stakes in Westminster

James Downs, Mental Health Campaigner

This week, the Welsh Senedd debated proposals to introduce assisted dying but narrowly voted against it, however, momentum is growing in the UK, with public figures and politicians alike voicing their support.

Public opinion is increasingly in favour of assisted dying, with two-thirds of people in England and Wales approving of a change in the law, and the groundwork for legislation seems to be taking shape as the issue heads towards debate in Westminster

While the debate often centres around terminal illness, the door is open for other vulnerable groups to be included, such as people like myself with treatable conditions like eating disorders.

As it stands, patients like me already face serious risks of being denied lifesaving treatment. Legalising assisted dying could result in many more lives being lost—lives that could be saved with the right support.

As the Senedd debate showed, the subjects of end-of-life care and assisted dying can be deeply emotive when they resonate personally with individuals and their families. Members shared moving accounts of their own experiences when expressing concerns or support. The topic is close to my own heart, too, having lived with a severe eating disorder of some form for more than 20 years, often with life-threatening consequences.

“Recovery is possible”

Last year, I was admitted to hospital more than a dozen times with dangerously low potassium levels—so low that my heart could have stopped at any moment. Despite the danger I was in, my admissions were met with questions from doctors about whether they should continue treating me.

“How many times can we keep treating you if you don’t want to get better?” they asked. It felt as though they were giving up on me, and I am not alone in this experience—my work as a researcher shows this is not uncommon.

There is much reason for people with eating disorders to be concerned about the prospect of assisted dying, even if it’s supposedly confined to non-terminal conditions.

A recent study found at least 60 documented cases of assisted death in Belgium, the Netherlands, and the US where the patients had eating disorders. These cases highlight serious ethical concerns about how easily people with treatable conditions might be seen as eligible for assisted death, and this is now becoming a conversation in the UK.

In countries where assisted dying is legal, it is usually reserved for people with terminal conditions. You might think eating disorders wouldn’t qualify, but the study identified cases where they were redefined as a terminal illness to justify assisted death. This is deeply alarming.

Eating disorders are treatable, and recovery is possible—even after many years of suffering. Research consistently shows that the severity or length of an eating disorder does not necessarily predict how well someone can respond to treatment.

What keeps people like me unwell for so long is often a lack of access to high-quality care and support. This has been a particular problem in Wales, where the Eating Disorder Framework for Wales only came into being in 2008 to provide the specialist care people had gone without for too long.

Rather than addressing these systemic barriers, the idea that eating disorders are untreatable terminal illnesses is gaining traction. In 2022, there was a proposal to create a new category of “terminal anorexia nervosa,” which would allow patients to receive palliative care and, in places where it’s legal, the option to end their lives. This is a dangerous precedent, one that leaves patients and families feeling like lost causes.

Even if the new category of terminal anorexia has been rejected, it’s an idea that has taken hold and worsened the stigma people with eating disorders face, including from healthcare professionals.

When I was just 16, I was told that I’d live with anorexia for the rest of my life. By the time I was 20, I had been labelled with a “severe and enduring eating disorder,” despite having to wait for more than six years with severe anorexia before receiving any treatment, as I was deemed “too unwell” to respond.

We’re already seeing a disturbing trend of clinicians withdrawing treatment for severely unwell patients, treating it as the compassionate option.

Passive euthanasia

While assisted dying isn’t yet legal in the UK, passive euthanasia—letting a patient die by withholding lifesaving treatment—has happened.

There have been cases where specialist services have sought permission from the Court of Protection, including in Wales, to withdraw care from patients they considered too sick to recover. Tragically, some of these patients were only teenagers when they died.

If assisted dying becomes legal, many more lives of people with eating disorders could be lost—lives that could be saved with the right support.

Rather than offering us medicalised pathways to death or unsafe services, people with eating disorders need effective and compassionate treatment that we can trust.

We need to challenge practices and attitudes that erode hope for recovery, because people facing eating disorders and other mental illnesses can and do recover, even after many years. Legal frameworks must provide protections for such vulnerable people, who must have a voice in debates in which they face some of the highest stakes.

I didn’t believe I would survive my illness, but now I have a positive life I could never have imagined. People who face situations like mine do not need permission to die, they need meaningful assistance to live.

James Downs is a mental health campaigner, researcher, psychological therapist and expert by experience in eating disorders. He lives in Cardiff and can be contacted at @jamesldowns on X and Instagram, or via his website: jamesdowns.co.uk