Eating Disorder Awareness Week 2023: Human Rights in Treatment
Trigger warning: This blog talks about eating disorders including real-life stories, invasive treatment methods, death and BMI.
Did you know it’s Eating Disorder Awareness Week? This national campaign is run by eating disorder charity BEAT and aims to spread awareness and understanding of eating disorders and the challenges faced by those impacted by them.
The NHS describe an eating disorder as a mental health condition where a person uses control of food to cope with other situations or feelings. Treatment for an eating disorder depends on the person and the type of eating disorder they have. Some people receive help from their GP or specialist teams in their community, others may be admitted to hospital for treatment.
At BIHR, we work with NHS staff to promote a culture of respect for human rights within health services. Currently, we have two different programmes in England which work specifically with staff in mental health and eating disorder wards. We’ve also created resources for people accessing services and their loved ones to help them understand and advocate for their rights.
In doing this work on eating disorder wards, we spend a lot of time talking to staff about two very important rights. These are the right to life (Article 2) and the right to be free from inhuman or degrading treatment (Article 3).
The Practice: Human rights on eating disorder wards
The right to life means that public bodies and their staff, like NHS workers, have a responsibility to protect their patients’ lives as well as not doing anything to take away their lives. Eating disorders are a complex mental health condition and sometimes, in the most serious of cases where a person is not eating enough food or drinking enough water, life may be at risk.
When a child or adult is not getting enough nutrients through eating, nasogastric feeding (a feeding tube that carries nutrients through the nose to the stomach) is sometimes used. This procedure often causes serious distress to the patient and in doing so engages another very important right. The right to be free from inhuman or degrading treatment means public bodies have to protect people from serious harm. Different things can be considered “serious harm” to different people, but it is a high threshold to meet. Courts have previously found that using nasogastric feeding against someone’s will can sometimes be classed as inhuman or degrading treatment.
Both these rights are absolute rights – meaning that they can never be interfered with or limited by public bodies. However, public body workers often tell us that they are faced with difficult decisions where the only way to protect someone’s life is through treatment with a nasogastric tube. This raises an important question: what does the law say should happen when two absolute rights seem to conflict?
The European Court of Human Rights (ECtHR) has said that cases with a conflict between the right to life and the right to be free from inhuman or degrading treatment are “not solved by the Convention itself”. To find a solution, it has to look at the laws in the country and consider whether the public body acted “solely in the best interests” of the person they were supporting. The ECtHR recognises that countries have a “margin of appreciation” (flexibility to decide how best to protect human rights in their own laws) when it comes to how to balance the right to life with the withdrawal of medical treatment.
UK courts have said that while there is a “strong presumption that all steps will be taken to preserve” life, it may “yield to other considerations” in exceptional circumstances. They have differentiated between “external violation” (ie causing death) and “the duty to provide humane care and assistance” (ie preventing death) by saying that the duty to provide care “ceases when such treatment can serve no humane purpose”. This means that while causing death will always breach human rights, not providing life-saving treatment will not breach human rights if it wouldn’t be humane to keep treating the person.
On the other hand, courts have also said “as a general rule, a measure which is [in a patient’s best interests on the basis of] therapeutic necessity cannot be regarded as inhuman or degrading.” This means that treatment that is in the best interests of a person and medically necessary will not breach Article 3.
If a patient has the capacity to make the decision about their care, they can generally consent to or refuse treatment – even if it puts their life at risk. Similarly, a parent can consent to treatment on behalf of a child. However, if a person doesn’t have capacity to consent or if parents (and child, if they’re over 16 or Gillick competent) disagree with doctors about how to treat a child, the decision must be made based on the patient’s best interests. The “best interest” test is the same for adults and children although will take all factors, including age, into account.
This test must be carried out when two absolute rights seem to conflict to come to a decision that is compatible with human rights law. This is exactly how decisions around nasogastric feeding for patients with eating disorders must be approached –by weighing up the patient’s individual circumstances and best interests. When cases are complicated, they’re often referred to the courts for a decision.
19-year-old BG was being treated in hospital for anorexia. She refused any food or drink that might contain calories but was being held down and treated with a nasogastric tube twice a day. This caused her a lot of distress. She was also diagnosed with mixed personality disorder; mixed anxiety and depression; chronic fatigue; and fibromyalgia. Dr Z, who was treating her, described her as “intensely consumed by pain (physical and emotional)”.
Dr Z said the hospital had run out of treatment options. Dr Z did not believe BG had capacity to make decisions about her care so the Court had to decide what would be in her best interests. The Court heard that BG had made it clear for a long period of time that she wanted to go home. Her parents and doctors also thought it would be in her best interests for her wishes to be respected. The Court also considered the fact that there were no more treatment options and that BG’s whole life was focused around treatment – she had not been able to build relationships outside her family or build her own identity.
The Court said, “To be asked to make an order which will be likely to lead to the death of a sentient, highly intelligent and thoughtful individual who, if otherwise able and minded, might accept treatment which could assist her is as grave a decision as can be made.” However, the Court recognised that the right to life might be outweighed in some cases where “treatment is futile, overly burdensome to the patient or where there is no prospect of recovery”.
The Court decided it was in BG’s best interests to end treatment. She returned home and passed away on 23 July 2022.
In BG’s case, they decided that it would not be humane to keep treating her, so it was not a breach of her Article 2 right to life to stop. It is important to remember this was based on BG’s specific circumstances and courts have decided differently in other cases.
32-year-old E had “extremely severe anorexia nervosa” and was being looked after in a community hospital under a care regime designed to “allow her to die in comfort”. E had refused to eat solid food for over a year when her local authority made an application to have her moved to an intensive care unit where a nasogastric tube could be used to keep her alive.
The year before, E had tried twice to make advance decisions (a formal statement about what treatment you do or don’t want if you lose capacity to make a decision about your care in the future). These said she didn’t want a nasogastric tube. However, the Court decided she didn’t have the capacity to make this decision at the time she made the statement, so it was not valid.
This meant it was left to the Court to decide if it was in E’s best interest to receive treatment. E told the Court that “she had wanted to live a positive and productive life, but had failed”. She wanted “to live for the remainder of her life as she chooses, and if necessary to be allowed die with dignity.” E’s parents also said that while it “upsets us greatly to advocate for our daughter's right to die…We feel that she has suffered enough.” Doctors treating E said her disorder was “severe and enduring, though highly manageable and probably treatable” and that “it does not feel appropriate to fight with her at this point”.
However, Dr Glover, an expert hired by the Court, noticed that E’s BMI had not been brought up to 17 since she was 15 years old. He said that many eating disorder patients will not recover from the effects of malnutrition unless they have their BMI brought up to 17 or above. He said that when E’s BMI was brought up to 17, she completed her A Levels and gained a place at medical school. He also noticed that E’s medical records showed she improved significantly when at BMI 15 or above. He thought there was still some potential to treat E if her BMI was brought up to 17. During the court case, Dr Glover identified a specialist hospital that could treat E, which her Local Authority said they would fund if found to be in E’s best interests (although the parents had been told in the past that funding was not available).
The Court said it had to weigh up E’s right to life and her personal independence, protected by Article 8 of the Human Rights Act. Article 8 is a non-absolute right, so it can be interfered with where it is lawful, legitimate and proportionate to do so. The Court decided that the interference, while severe, was justified to save E's life.
It also considered whether the nasogastric tube would be inhuman or degrading. The Court said it would “not overrule [E’s] wishes if further treatment was futile, but it was not”; there was “a possibility it would succeed...and it would not be right to turn down the final chance of helping this very vulnerable young woman.” It therefore decided that the nasogastric tube was not a breach of Article 3 and was necessary in order to protect her right to life.
Human rights are about the human
The Courts in BG and E’s cases managed different absolute rights by finding the circumstances in which those rights would not be breached rather than finding it justifiable to breach them. That they came to different conclusions in each case shows that while human rights apply to us all, there is no one-size-fits-all way to apply them. Ultimately, each decision must be made on the individual circumstances and respect the human behind the right.
Please note: BIHR Explainers are provided for information purposes. These resources do not constitute legal advice. The law may have changed from the date of writing.
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