The Power of Positive Thinking

A comparison of the heart-breaking case of Patricia with another anonymous girl with anorexia highlights the importance of hope and tenacity in treatment. And why eating should never be up for negotiation

Miss C is 15 years old, desperately emaciated and suffering from insomnia. The once ‘good-natured girl’ is suddenly ‘obstinate and restless’. And she is not eating, at least nowhere near enough to return her to health. She has inexplicably developed an aversion to food and is consequently becoming increasingly malnourished and dangerously ill. At the same time, she has become ‘loquacious and obstinate’. When anyone tries to persuade her to eat, it is difficult. She will not stay quiet and will fight over every mouthful. Not knowing what to do, her family seek medical help.

Patricia is 23 years old and desperately emaciated. She is articulate and she is also exhausted. She developed anorexia nervosa ten years ago. Her family also sought medical help. Patricia has been hospitalised on many occasions. She has been force-fed by nasogastric tube, threatened with force-feeding on other occasions, and doubtless undergone various psychological interventions. Nothing has yet reversed the anorexic thinking.

With prompt, and sufficient, renourishment, and plenty of rest, Miss C makes a sustained recovery. She has returned to a healthy weight, and the colour has come back to her cheeks.

In contrast, Patricia’s case has gone to the Court of Protection. Patricia’s life is in the balance and those treating her have run out of ideas.

The physicians in charge of Patricia’s case believe that she is unable to increase her caloric intake. She is perilously close to dying of malnutrition. With the medics at a loss to know how to help her, it is up to Mr Justice Moor to decide what steps to take and whether she should be fed by nasogastric tube once more.

The judge must rule on whether Patricia has ‘capacity’ to make decisions about her medical care. If he decides that she doesn’t, it is up to him to say what happens next. In law, capacity essentially means that a person can understand information given to them and make a decision based on that information.

Mr Justice Moor previously ruled that Patricia ‘lacked capacity to decide on her medical treatment’ and therefore, in what seems a rather strange leap of logic, decided to ‘afford her autonomy’. This was because he was concerned that more nasogastric feeding under compulsion would cause her great distress and ultimately prove futile.

It is undoubtedly true that it would be distressing, as are many medical interventions, for example amputation of a gangrenous limb or chemotherapy. Medicine can be a messy, brutal business.

It also saves lives.

While the judge concludes now that Patricia does not have capacity to make a decision about her medical care, he rules that she does have litigation capacity. She can ‘instruct her own lawyers and conduct the litigation herself’.

He notes: ‘…one of my colleagues, Mostyn J, once described a situation where a party has litigation capacity but does not have capacity to take decisions as to their medical treatment to be as rare as a snow leopard.’

In my opinion, in anorexia this is far from unusual. In fact, I’d argue that it is the norm. This is because, in general, people who have anorexia nervosa can typically think rationally about everything except their food intake and related topics.

There is, of course, a reason for this. It seems likely that the condition works as a kind of feedback loop: energy deficit causes anorexic thinking; anorexic thinking increases energy deficit. This is why so many people become stuck in the condition, and why their thoughts about food remain intractable until sufficient weight is gained and food restriction has ceased.

To expect someone to be able to change their thinking while they are still malnourished and restricting food intake, then, is to expect the impossible. And this is not the job of those treating someone with anorexia. The job of treatment providers is to hold that person’s hand as they walk through the fire, gently guiding them through until they reach the other side.

Although the treatment team has failed in this, Mr Justice Moor says that he is ‘entirely satisfied that all practical steps have been taken to try to assist’ Patricia.

Of course, we can’t know the details of the treatment Patricia has received, but have they really tried everything? With experimental pharmacological treatments being trialled and psychological interventions like ICBT-E proving successful, even with patients with a very long illness, can they honestly say that they are at the end of the road?

And with anorexia, perhaps more than any other illness, the right treatment team is essential. An approach that has been tried several times by one set of professionals might work well with a different set of professionals. Anorexia treatment is not the same as chemotherapy, where it doesn’t really matter who’s administering it as long as they have had the right training. Treatment for anorexia requires a particular skill set: tenacity, compassion and an unfailing belief that the person who is ill can get better. From the information available about the treatment team in Patricia’s case, I’d say that at least two of those qualities are missing.

One aspect of Patricia’s treatment that I find troubling is the fact that she seems to know, to the calorie, how much food she is eating. She has agreed to increase the amount by x number of calories per day. In a disorder that feeds on numbers, the smaller the better, I believe that it is counterproductive to tell the patient how many calories they are eating just as it is unhelpful to tell them their weight or indeed to set a target weight. The patient will obsess over this number and the disorder will try to get them to decrease it.

Another worrying issue is a comment that the medics made to the family, according to this The Telegraph article, that Patricia was the “worst they have ever seen”. There is no explanation of how they are measuring this. Is it simply her BMI? Or the state of her mind? Or her resistance to treatment? Or the number of years she’s been unwell?

I can’t help feeling that this, perhaps hyperbolic, statement may be an attempt to absolve them of responsibility of failing to treat the illness successfully, putting the blame on the patient rather than accepting that she has been let down as she has slid further and further into the illness. After all, nobody becomes severely emaciated overnight.

In the latest ruling, Justice Moor repeats his former assertion that autonomy is paramount. ‘Very importantly, a person is not to be treated as unable to make a decision merely because she makes an unwise decision,’ he says.

But who is really making that decision, the patient or the illness?

Look, we’re not in the Middle Ages. Anorexia is not a demonic possession. But it is most definitely in the driving seat. This means that the person who has anorexia, particularly when severely physically unwell, is simply unable to make a rational decision about food.

The judge knows that this is the case and even speaks about Patricia having a ‘partner’ — anorexia — which ‘controls the other part of her mind and stops her carrying out what she knows is actually in her best interests.’ If we accept Justice Moor’s premise, it is not Patricia who is making the decisions at all; it is anorexia. If we compare this to cancer treatment, it’s a bit like asking the tumour if it would like to be excised.

Yet Justice Moor concludes: “I am still of the view that she should have her autonomy on the basis that it is not in her interests to force-feed her against her wishes, as it would be futile and cause her nothing but distress and turmoil’.

To me, this is the wrong decision and one that could set a dangerous precedent where judges are able to rule on whether anorexia patients live or die. It is the malnourishment that is causing the distress and turmoil. Not feeding Patricia is simply feeding the illness — and of course may lead to her death. And how can you argue that allowing someone to die is in their best interests? Would we allow this with any other illness, particularly when we know that many people who have been in a similar situation have made a full recovery?

Let’s look again at the case of Miss C. What happened in treatment that led to her recovery? Why was the outcome successful?

The physician’s instructions were clear: ‘Food should be administered at intervals varying inversely with the exhaustion and emaciation.’ He added, crucially: ‘The inclination of the patient must be in no way consulted.’

He continued: ‘I would advise warm clothing, and some form of nourishing food every two hours, as milk, cream, soup, eggs, fish, chicken… the nursing and the food are more important than anything else.’

This doctor was not a specialist in eating disorders, but he had treated several patients with the condition. ‘It is sometimes quite shocking to see the extreme exhaustion and emaciation of these patients,’ he said, ‘yet, by warmth and steady supplies of food and stimulants, the strength may be gradually resuscitated, and recovery completed.’

The difference between these two cases is exactly 150 years. Miss C’s case was overseen by Dr William Gull, physician to Queen Victoria and the person who named this mysterious illness of self-starvation ‘anorexia nervosa’.

William Gull quickly learned that you must never give a patient with anorexia a choice over whether they eat or not. Food is non-negotiable.

Perhaps because we have become such an individualistic society, we seem to have lost the ability to do this. The individual’s rights are paramount and must be put above all else — even if that means acting in a way that is against that person’s interests. In anorexia this can lead to death, of course. 

Maybe we also don’t have the resources to have a nurse sitting with every patient until they finish everything on their plate, although that is what’s required. It’s possible that some people treating those with anorexia just aren’t trained properly or have outdated ideas about the nature of the illness. But ultimately are we just far too worried about giving the patient autonomy, when really all we are doing is putting the illness in charge?

It’s also striking that Gull’s patients had to eat something every two hours. It was a pragmatic approach, where the body is renourished and the brain is simultaneously relearning, through repeated behaviour, that food is not to be feared — and it seemed to work. We can’t know Miss C’s state of mind, of course, but she certainly regained her physical health and there is no mention of relapse in William Gull’s paper.

Gull also, perhaps instinctively, understood that certain foods should be given, particularly meat, fish and dairy products. There’s some anecdotal evidence and some studies that suggest that foods high in fats are helpful in recovery from anorexia, and this study on rats showed that a diet high in fat protected the rodents against developing activity-based anorexia (ABA).

The patients were also treated with heat, as Gull noticed that they had lower than normal body temperatures. This study shows the effects of cold temperatures on cognition in healthy people. It seems very likely that the sustained reduction in temperature caused by malnourishment has a powerful effect on the brains of patients with anorexia. Warming patients up seems, to me, a no-brainer.

Most striking, though, was Dr Gull’s firm belief in recovery and the fact that the patients could be rehabilitated even if they were extremely unwell.

‘As regards prognosis, none of these cases, however exhausted, are really hopeless whilst life exists;’ said Gull ‘and, for the most part, the prognosis may be considered favourable.’

150 years ago, William Gull, it seems, understood anorexia far better than some doctors working in the field today, who entertain unproven theories around the psychology of the illness and about illness duration, and who fail to prioritise the things that have been shown time and again to make the biggest difference in recovery: food and weight gain.

Gull did not give up on his patients. He held the hope that they would get better. This no doubt rubbed off on the patients, who believed they would recover because they were told that they would. In an illness in which words seem to hold preternatural power, this is far more important than many medics and members of the legal profession seem to understand.

If someone can’t eat, they must be helped to eat.

If someone feels hopeless, they must be given hope.