MPs must consider the risks of assisted dying to people with eating disorders

Participants march for those affected by eating disorders in central London (Credit: Akira Suemori / Alamy Stock Photo)

Today, thanks to a wonderful team of physicians who believed in my ability to recover far more than I did, I am healthy. More than that, I can devote my working life to helping other people to recover from eating disorders, through the non-profit organisation Eat Breathe Thrive.

I’m also a researcher, and I’ve spent much of my career developing and conducting studies on innovative ways to treat the illness that nearly took my life.

I understand why assisted dying campaigners believe changing the law is necessary. I agree people deserve dignity at the end of their lives. But it is deeply concerning that the debate has barely touched on the risks to young people with severe eating disorders.

The Terminally Ill Adults (End of Life) Bill claims that lethal drugs will only be available to those of sound mind whose death is inevitable. But our research suggests safeguards are slippery in practice.

Earlier this year, I published a study in the journal Frontiers In Psychiatry with my colleague, Dr Catherine Cook-Cottone. It revealed that at least 60 people with eating disorders have been euthanised or assisted in suicide – including in the US where this practice is restricted to terminal conditions.

I say “at least 60” because most of the data is hidden from public scrutiny. In multiple states, we were able to confirm that deaths had occurred but could not ascertain how many. The cases we found were shocking. A third of those who died were in their teens and 20s; all were women. Physicians asserted that young women had so-called 'terminal anorexia', a term that was invented based on just three cases.

We also found a shocking lack of transparency and oversight. In the US, eating disorder deaths were hidden under 'other illnesses' in public reports. Without insider knowledge, the public would not know these deaths had occurred.

Defining a 'terminal illness' may seem straightforward, but I believe the wording in the proposed bill – similar to the law in Oregon – leaves room for broad interpretation.

While Leadbeater's bill specifies that it applies to people with a terminal illness that “cannot be reversed by treatment”, the assessment of this is left to clinical judgment. In the field of eating disorders, many physicians believe that some cases are indeed untreatable, even though this perspective is not supported by robust evidence.

In our recent study, we found that 95 per cent of physicians who approved patients with eating disorders for assisted death stated that these patients had “irremediable, incurable, or untreatable” eating disorders. These determinations are highly subjective, and it seems unlikely that a judge would overrule a medical judgment of this nature, leaving the criteria open to misuse.

So, at my sickest, I suspect I would have met the criteria for 'terminal’ in Kim Leadbeater’s bill – not because I had a mental illness but because my death was likely within six months due to malnutrition. I'm 35 now, and profoundly grateful to be healthy. But when I was 12, I stopped eating, and for the next four years I was in and out of hospitals.

At 16, my body mass index was down to single figures, meaning I weighed about half as much as a healthy person my height and age. My skin was yellow from liver failure. I was placed on a cardiac ward. One doctor told me I was unlikely to live much longer, and I didn't want to.

I was suicidal and had repeated conversations with doctors, begging them to let me die. I'm alive now because they refused, and because they were not legally able to give me lethal drugs. It was more than a year before I began to recover, and it took 16 months before I was well enough to leave hospital.

My case is far from unique. Amanda, an anorexia survivor, shared her story with me: “When I was diagnosed with anorexia, I was told full recovery was near impossible. I began researching ways to end my life, including countries that had legalised euthanasia. If my diagnosis had included the word ‘terminal’, I know I would be dead.” Today, Amanda mentors others and is living proof that treatment can save lives.

Many of the cases highlighted in our study are truly disturbing. For instance, Alyssa, 36, from California was prescribed lethal medication by a physician in Colorado, where assisted dying has been available since 2016.

Her parents questioned whether more treatment options were available since Alyssa had never completed residential treatment, restored her weight, or received a feeding tube. Despite these opportunities for intervention, the physician dismissed further treatment, stating: “If someone restricts the tube God gave them [i.e. the oesophagus, connecting the mouth to the stomach], they are likely to restrict with a surgical feeding tube as well, so it would not be a long-term solution.”

Alyssa was prescribed life-ending drugs, even though one of the stipulations of Colorado's End-of-Life Options Act is that a patient must have less than six months to live. Her doctors deemed a treatable mental health condition as terminal.

In our overstretched NHS, doctors have limited time and few objective methods to distinguish between suicidal impulses and informed choice. The question before Parliament now is not only whether people have the right to choose how they die but whether this can be safely implemented within the NHS.

Experience from other countries shows that safeguards are often based on hollow rhetoric. No matter how well-intentioned, I believe this bill fails the public safety test, so MPs should vote against assisted dying: the risks are too great, and vulnerable lives are too precious to gamble with.

Chelsea Roff is executive director of Eat Breathe Thrive, a non-profit organisation that works to help people recover from eating disorders

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