Real Stories of Real Human Beings

Hadley Freeman writes:

“It is very important that this committee doesn’t get too hung up on anorexia,” Dr Simon Opher, Labour MP for Stroud, said last week in the committee hearing for Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill. Happily for Dr Opher, it didn’t: the committee voted against closing loopholes that would allow patients with anorexia to choose death by state. Eating disorders experts wrote in an open letter that this bill was putting people with anorexia — overwhelmingly girls and women — at “grave risk”. But the MPs, with the commendable exceptions of Naz Shah, Danny Kruger, Rebecca Paul and a few select others, decided not to get too hung up on that.

Funny thing, anorexia. When politicians can blame fashion magazines or social media for causing it, you can’t get them to shut up. But when this country is on the verge of potentially enabling extremely ill women to make choices about their mortality they would not make if they were less ill and had better treatment, suddenly they want to move on.

I don’t blame Dr Opher for wanting to move on. When you’re talking about assisted death, it’s far easier to focus on those suffering fatal physical illnesses for whom assisted death would be a merciful relief. One suggested amendment that would have protected anorexics was that a person can’t qualify for assisted death because they have stopped eating and drinking; Leadbeater rejected that, referring to a woman with mouth cancer who had her tongue removed and starved to death. “We have to be careful not to dismiss those cases because they are real stories of real human beings,” she said.

Here’s another real story of a real human being. When I was 15, I made a new friend. Her name was Nikki Hughes and she was a talented artist, kind and funny. She was also anorexic, and we met because we were admitted to an eating disorders ward on the same day, and that, she said, bonded us for life. I don’t know what doctors made of Nikki, but I do know what they made of me, 15 and on my fifth hospital admission for anorexia. One told my mother to prepare for the very real chance that I would die. That sounded — to my nutrients-starved, illness-addled brain — great, because it confirmed I was good at anorexia.

Nikki was different. She talked about the art she would make when she recovered and would tell me off when she caught me hiding food. Two years later, when I was recovering and back at school, I opened the newspaper and there was a photo of Nikki: she had died. The hospital she was in at the time was told it could not “override her wishes” to starve herself to death and it would be assault if it tried to save her life with a feeding tube.

Anorexia is complicated: it’s a mental illness that leads to physical complications, which exacerbate the mental ones, and so on. Even more complicated, the more ill a person becomes, the more they resist treatment (eating, in other words) and the more they want to die. Offering an anorexic assisted death is like offering her liposuction: her desire for it is a symptom of her illness.

Right-to-die campaigners love to talk about autonomy, but such terms are meaningless when it comes to women whose minds are crazed by starvation. Kruger pointed out last week that increasing numbers of anorexics are being classified as “terminal” in the NHS and given “palliative care”, which the Royal College of Psychiatrists has described as “troubling”.

Some doctors I spoke to last week said this helps those who are in a critical condition find some comfort when other treatments have failed. Others worry it is a cheaper, and more dispatchful, way for the NHS to deal with these wilful women, and they are extremely concerned assisted dying could operate similarly. As Nikki and I learnt, it is impossible, even for doctors, to predict outcomes. The patient most determined to starve herself into the ether can recover. As my psychiatrist 30 years ago told me, there’s always hope.

Eating disorder experts I spoke to have contrasting views about the assisted dying bill. Some believe that the bill excludes those with mental illness. In fact, it excludes those who are terminally ill “only” because of mental illness — anorexia can lead to physical problems, and these can qualify a person for assisted death. Others say only a tiny number of anorexia patients could qualify. But what number is acceptable? Anorexics are already gaining access to assisted death in Colorado, California and Oregon. One consultant said she could foresee a time when “20 to 30 patients with anorexia access assisted dying in this country every year, because of the contagion effect”.

Given girls are developing the illness at an increasingly young age, and with increasing severity, it was vital these loopholes were closed. But as one person who has been in the committee room told me, “there is a frenzied energy, almost a religious fervour” from some MPs to jam this bill through. It is impossible for most people to comprehend the mind of an anorexic, which hisses that death is preferable to eating. Which is why it is unforgivable that MPs decided not to get hung up on those who do.