No to Terminal Anorexia Nervosa
I came across a paper titled ‘Terminal anorexia nervosa’ this week, which immediately piqued my interest. The paper was contained within a New York Times Magazine article ‘Should Patients be Allowed to Die from Anorexia Nervosa?’, my immediate answer to which was no! Having overcome anorexia nervosa in my past, the prospect of letting somebody die from this psychological disorder horrified me. Despite this, I read the paper. Warning: This article will contain discussion of eating disorders, palliative care, and death.
Firstly, I’m aware that many people may not know what anorexia nervosa is. Body Whys, The Eating Disorder Association of Ireland, define it as: ‘A persistent restriction of energy intake (food) leading to a person becoming significantly underweight (for what is expected for their age, sex, developmental stage, and physical health).’
For a diagnosis of the disorder, there must be an intense fear of gaining weight or of becoming fat, or a persistent behaviour that interferes with weight gain. The person with anorexia nervosa will also experience disturbance with their body weight or shape, with high value put on body shape and weight on self-evaluation or persistent lack of recognition of the seriousness of the current body weight. An eating disorder in like an umbrella term referring to anorexia nervosa, bulimia, binge eating disorder, or other specified feeding or eating disorders.
The paper entitled ‘Terminal anorexia nervosa’ by Guadiani et al was published in February 2022. It sets out the conditions for a patient who may be labelled terminal. The patient must have a diagnosis of anorexia nervosa, be aged thirty or over, have previously participated in high quality care and possess decision making capacity to be aware that further treatment would not cure the disorder and also be aware that their actions will result in their death. The authors of the paper believe that patients deserve the same care and rights as others suffering with a terminal illness.
The paper follows three case studies which, again I say this as somebody who recovered form anorexia nervosa, shocked me to the core. One person named Aaron, who died with a palliative care team, developed anorexia nervosa after a healthy eating talk in school which led to excessive exercise and food restriction.
The habits continued and Aaron spent two decades in hospitals and inpatient and residential eating disorder facilities. Each time he was discharged with sufficient weight gain, he relapsed. In his thirties, he spent ten months in an inpatient facility against his will (due to a court mandate on the grounds of grave disability from mental illness) while being tube fed. After discharge, Aaron resumed restrictive habits.
He was given two options: to continue to undertake a partial hospital programme or if he relapsed and refused to go through with readmission, he would receive care by the outpatient team and his family until a time of needing palliative care. He went with the first, however upon discharge refused to eat at all. He told his outpatient therapist “I wish I could eat, but I won't eat; I don't want to die, but I feel hopeless that there's any other pathway."
A psychiatrist found that Aaron possessed decisional capacity.
He signed a Do Not Resuscitate (DNR) order and was referred to a home palliative and hospice care organisation. During this time, when he did not eat, he was afraid that by smelling his mother's cooking at home or by being around grocery trolleys at the shop, he would ingest the calories from that food.
After eight and a half weeks without food, vomiting daily and feeling weak, Aaron began to receive morphine for pain and distress. His doctor assured his parents that his death certificate would say anorexia nervosa and malnutrition, not suicide. Two weeks later, Aaron died.
His parents expressed “enjoying a deep loving sweetness with their son that they hadn’t experienced in years” and having the time and space to reconnect with him before he died.
The authors of the paper state they “would not condone accepting a terminal diagnosis in younger patients.”
A study in The Journal of Clinical Psychiatry in 2017 showed after nine years of having anorexia nervosa, 31.4% of patients had recovered. After twenty-two years, the rate of recovery had doubled to 62.8%.
Personally, I would dispute diagnosing terminal anorexia nervosa in any patient. I think it is an utter denial of hope for the patient, their families, the medical team, and their psychiatrists. I say this with a cancer patient in mind, where one cannot hope tumours away. They can’t choose to get rid of the tumours, they are not offered the option of recovery.
Canada is to introduce medical assistance in dying for people with incurable eating disorders in March this year. In September 2023, leaked NHS documents described how people with long-standing eating disorders could be offered palliative care in the east of England. I like to believe that societies progress, rather than regress.
This to me is not progression. I would worry that in Ireland, where we lack services and specialist treatment beds for people with eating disorders, that people would look to palliative care for a solution.
* Gemma Good is from Killeshandra and a fourth year journalism student in University of Limerick
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