Anorexia and Assisted Dying

Anorexia nervosa is not a terminal illness. Someone severely ill with malnutrition, who has had the illness for many years, can recover completely. So, why are people in the eating disorders community so concerned about Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill, which will get its first vote in the Commons on 29 November?

Definition of a terminal illness

The bill describes a terminal illness as: an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment. Of course, that absolutely does not apply to anorexia nervosa. Anorexia is not a progressive disease, and it can be entirely reversed with good nutrition, sufficient weight gain, time and, if needed, therapy. Cased closed.

Well, you would have thought so. But there has recently been an attempt to frame anorexia, in some cases, as a terminal illness, despite the lack of any convincing evidence that there are patients for whom death is the only outcome. In fact, there is increasing proof that patients who have been very ill with anorexia for many years are still able to completely recover from anorexia.

Is it always clear cut?

While it seems clear what a terminal illness is, and what it is not, is there a danger that the definition will be expanded? If, for example, a patient with a chronic illness refuses treatment and, as a result, is on a pathway to mortality, would this patient’s illness now be considered terminal? It certainly would be if doctors didn’t intervene against the patient’s will. This scenario is seen time and again by eating disorders’ clinicians, and often results in life-saving interventions like forced nasogastric (NG) tube feeding. This is deeply unpleasant for clinician and patient alike but necessary if this person is to have a chance at living.

I have heard it argued by certain doctors that feeding some patients in this way may not be in their best interest. After repeated episodes of this kind of treatment, it may be kinder to allow the patient to die, they say, than extend their suffering in this way. But I have also spoken to people who have had this treatment and since recovered, and they have told me that they are truly thankful for it. These people have gone on to lead rich and meaningful lives beyond anorexia. And perhaps we can worry too much about the trauma of this intervention when memory is so compromised by malnutrition that in the long term it may well be forgotten.

In a case like this can we even be certain that this type of treatment is truly the only option? It’s perfectly possible that the doctors and nurses treating the patient have simply not had the time to sit down and patiently help the person to feed themselves. This is not necessarily the fault of the treatment providers but the result of a resources-starved system which is often barely functioning at all, let alone giving patients individualised support.

And it seems clear to me that there are some doctors and nurses working in the field who simply don’t have the stomach for treating patients with anorexia nervosa, which is, by its nature, a brutal business.

As parents, with no training, many of us have been tasked with renourishing our children back to health. This involves overseeing every mealtime, every outburst, all the tears, the screaming, the self-harm and the bile. Every day for months, sometimes years. We are given the job of literally torturing our children back to health. It is far from pleasant. It goes against all our parental instincts. We do not wish to cause our children such distress, and we don’t get to go home at the end of a gruelling shift. But we do it anyway, at least we try, because we love our children more than anything in the world, and the thought of losing them is inconceivable.

So, when some doctors and nurses say it would be kinder to withdraw treatment from a patient, are they really just projecting their own fear of the treatment on to the people they are supposed to be helping?

Capacity

Capacity is a legal term which means the ability to understand information and make decisions about your life. In the context of the bill, the patient must have the capacity to make a decision to end their own life.

In my opinion a person with anorexia nervosa should never be seen to have capacity to make this kind of decision. For a start, the brain’s decision-making abilities may be severely compromised by malnutrition. Secondly, thinking around food and body shape is altered by the changes in the brain, making it impossible for the patient to think rationally about these two things. In my opinion, the thinking of anorexia and the malnutrition are inextricably linked. It’s no coincidence that the wonky, obsessive thinking of someone who is hungry/starved is all around food and body size instead of, say, dogs and tall buildings. Many people when severely unwell with anorexia will say they are more afraid of weight gain than they are of dying. This is not the expression of a rational brain.

Yet many people who don’t understand this are blind sided by people with anorexia because they are often so rational and so lucid on just about any other topic. Many people with anorexia can even talk articulately about their own illness. But they may not be able to eat a yogurt. And that doesn’t indicate capacity to me.

This bill states that the patient must not have been coerced or pressured by any other person into making the decision to end their life. But what if it’s not another person pressurising them? What if it’s the illness itself? And of course, in the case of anorexia, it is very likely to be the illness calling the shots. All thinking about food will be so invaded by malnutrition that the person with the illness may be persuaded that this is the only option.

People with anorexia also change their minds all the time. How can we be sure that a decision one day would not be different a few weeks down the line, perhaps when it’s too late? And people with anorexia do not always mean what they say. They may be begging for treatment to be ended when deep down they wish that someone else would make them eat.

Now, Kim Leadbeater thinks that her bill has covered all of this. If, say, the physician who’s signing off the patient isn’t an expert in that particular condition, they are able to refer the person for assessment by a registered medical practitioner who holds qualifications in or has experience of the diagnosis and management of the illness, disease or condition in question. But I have encountered many ED specialists who may be highly qualified and very experienced but are not necessarily up to date on the latest research on genetics, metabolism, inflammation, brain structure and more.

There are some who still believe age-old psychological theories about the illness, including the idea that imperfect parenting can result in a child gaining the ability to override the body’s survival instinct and starve themselves, sometimes to death. Some doctors in 2024 even believe that, if they discharge a patient from treatment at an extraordinarily low BMI, their brains may be miraculously able to change, and they will suddenly regain the ability to eat. There is still a great deal of magical thinking in the world of eating disorders.

So, what if the ‘expert’ who is called upon for a second opinion is one of these doctors? They are likely to say yes, of course this person has capacity. And someone will die who should have lived.

Brain immaturity

I’m also worried about the age at which someone could end up on this pathway. The bill covers people over the age of 18, which is way too young to die. The brain is a long way off maturity and there is at least anecdotal evidence that some recover from AN spontaneously in their mid-twenties. We cannot permit anyone to give up on their life before it has even begun.

Inadequate care

Every week I speak to or hear of parents whose children have not been able to access timely care in the UK. If they have managed to get help for their child, often it is when significant weight has been lost, the brain changes are substantial and the illness is far more difficult to treat than it would have been with early intervention. People are routinely discharged from treatment at low weights, left to fend for themselves for years and worn out by a system that seems not to be for them. Before we start talking about helping people to die, we need to start helping them to live.

Now you may feel that I’m being a hysterical mother. That I’m over-emotional about the issue. That I’m too anxious. That this bill is not intended for people with anorexia nervosa; it’s only for very clear cases where an illness is terminal. But between 2012 and 2024, in other parts of the world where assisted dying has been legalised, there are at least 60 documented cases of patients with eating disorders who were helped to die. That’s over 60 people who should still be in the world but aren’t because of well-meaning but ill-judged laws like the one Kim Leadbeater wants to get on to the statute book.