The importance of reframing ‘terminal anorexia nervosa’ as end-of-life care

A lived experience view on why the term 'terminal' is problematic

The importance of reframing ‘terminal anorexia nervosa’ as end-of-life care

The importance of reframing ‘terminal anorexia nervosa’ as end-of-life care

Whether or not to define ‘terminal anorexia nervosa’ is being vigorously debated in the eating disorders field.
In an article published in the Journal of Eating Disorders, August 25, 2023 edition, Andrea Phillipou writes:

Although I disagree with the terminology of ‘terminal AN’ and believe that establishing criteria has the potential to cause harm, I strongly believe in showing compassion to individuals with AN (anorexia nervosa) across all illness stages, including those who may wish to seek end-of-life care.

I was invited to share my thoughts in a peer review of Andrea’s article (The importance of terminology, lived experience inclusion and scientific discussion regarding end-of-life care in anorexia nervosa: a response to Gaudiani et al.) prior to its publication.
I wrote from the heart, basing my response on lived experience, and the experience of many people who have written to me about their struggle to reclaim their life from anorexia. I submitted my review and, thinking the content probably wasn’t “academic enough”, didn’t expect to hear more about it.
So, imagine my surprise when in conversation with Journal of Eating Disorders co-editor-in-chief, Phillipa Hay, at the recent launch of Australia’s 10-year National Eating Disorder Strategy. Prof. Hay, referring to Andrea’s article, said my lived experience response was what the editorial board wanted.  She said my review had been included in full, as an Addendum to Andrea’s now-published article in the Journal of Eating Disorders.
On behalf of all the people who have clutched a thread of hope and survived a near-death experience with AN, I felt deeply gratified at Prof. Hays’ news.
In drawing on my life experience, and that of others, I based my review largely on Andrea’s conclusion, which reads:

Defining ‘terminal AN’—or more appropriately, end-of-life care—is an important topic that requires considerate, thoughtful and respectful discussion. I am thankful to Gaudiani et al. [1] for initiating the dialogue on this vital issue. Ultimately, Gaudiani et al. [1] argue for compassionate care for those who wish to end their life. While I have concerns with the terminology used and the proposal to establish criteria, I agree with the authors that clarity is needed on how to determine if end-of-life care is warranted and how to approach it if so. It is essential that if any guidelines on end-of-life care for AN are to be produced, that they are co-designed with those with lived experience to ensure that hope can still be maintained that recovery is possible irrespective of length or severity of illness; in addition to ensuring the voice of lived experience determines the content of any such guidelines. By taking a thoughtful, considerate and compassionate approach to end-of-life care, it does not mean that we need to lose hope, but that all individuals with AN are treated with the dignity and respect that they deserve.

My review of Andrea’s article, on terminal AN, reads:

My perspectives on this topic come from more than four decades of personal experience with anorexia nervosa (AN), plus as a researcher, and as a mentor for the past 15 years with people who are living with severe and enduring anorexia nervosa.
Like Andrea, I disagree with the label ‘terminal AN’ because this can be seen as a validation, an ultimate goal, for people with this challenging illness. The illness seeks to isolate and destroy, and would be strongly attracted to, and aligned with the word ‘terminal’.
At the same time, I concur with Andrea that compassion towards individuals with AN is vital across all stages, including those who want to end their life.
My experience has led me to hold the view that there is hope at every age. I prefer to see a focus on hope, rather than creating a label that validates death as an outcome.
AN can be terminal. Many people with the illness do die. However, I’ve yet to meet a person who has clawed their way back from the precipice of death and regrets that they are alive today. I was one of these people. Forty-plus years is a long time to struggle with an illness in the mind. I am ever grateful to the doctors who did NOT give up on me. I am a grandmother now. My grandchildren call me, ‘Grandma’ and every day I give thanks that I am here to hear their voices and pamper them with love.
I am ever grateful to the psychiatrist who patiently encouraged me for more than 30 years, in finding a pathway to reconnect with my healthy self.  I credit him with saving my life. He could have given up; he could have labelled me non-compliant; he could have told me to go home and die; when I was suicidal, he believed in the ‘me’ I could not see, he always treated me with respect, and eventually I gained the courage to believe and trust in him, more than in my AN. My recovery of a healthy self after decades of struggle was described as a miracle.
Give up? NO!
Definitely, I agree with Andrea that the term ‘terminal AN’ is problematic.
Anorexia, especially, is a complex illness. There are similarities in each case, but also there are differences. Rarely is anorexia a single diagnosis. Co-morbidities are common. Treating the co-morbidities (e.g., in my case, chronic anxiety and depression, trauma) can assist in easing the effects of the anorexia. To apply the label of ‘terminal AN’ would feed the illness, not assist recovery.
Andrea points out that ambivalence is a common theme in terms of treatment and recovery – and this is why it is very important that the treatment team members don’t give up on their patient – they need to keep their door open – give the patient a thread of hope even when all seems lost.
Yes, there will be deaths – from organ or other physical failure, from suicide – there is only so much a body can take — but to ‘predict’ a termination of a life wracked with AN by placing a label on suspect patients would be fraught with dangerous risk of misinterpretation.

Hope must be the lantern that lights our path

There were multiple times when I would have chosen death if offered as a way out of my struggle. The worst outcome for me would have been if my psychiatrist had joined others (when we met, I had experienced six desperate years of misdiagnosis) and said, ‘Sorry, I can’t help you – you have had the illness too long to expect any change,’ I would not be writing this response to Andrea’s letter. I would not have seen my children grow up and marry. I would not have seen my grandchildren. I would have been a suicide statistic.
That said, I agree that ‘recovery’ is not possible for everyone. I find the word ‘recovery’ is not always appropriate for someone who has reconnected with their healthy self after decades with anorexia. Those decades with anorexia do not miraculously disappear. They remain part of one’s life experience. We can never be the person we would have been if we had not developed the illness. So, we cannot ‘recover’ who we were prior to the illness. There is a great canyon of life experience to catch up on. I prefer the term, ‘ongoing healing’.
I say this because many people with SEAN do not want to ‘recover’. They feel safe within their illness. Rather than pressuring and expecting them to ‘recover’ (and making them feel hopeless and suicidal when they fail), it is far better to focus on ‘improving life quality’, and with this focus, amazing progress can be achieved. Tiny steps forward can lead to bigger steps later. For instance, rather than insisting on all meals and snacks, focus on arranging an out with a support worker, going to a café for a coffee, or sitting by the sea, feeling the breeze on one’s face and the sand on one’s feet. Such experiences can help remind the patient of the beautiful life that exists beyond their illness and strengthen their will to live. As Andrea notes, it is important for the patient to be part of the treatment team; it is important for the patient, no matter what stage of the illness they are at, to be given a choice. It could be a choice between going to a café or going to see a movie; it could be between eating food or having an NGT. Or it could be, ‘Okay, you must have an Ensure – what flavour do you choose?’
The opportunity to have even a small choice gives the patient a sense of being respected, of having some control over their life and the situation, and this is very important. Always LISTEN to the patient and treat them as a person who deserves to be treated with respect, not as an illness. Be compassionate, not punitive.
Personally, I don’t see any validity for ‘terminal AN’ labelling. If a patient is very ill because of their AN, they can be given palliative care – without the label – because, you never know, they may rally and claw their way back to a healthy life.
Do not deny them the opportunity to grab this thread of hope.

Phillipou, A. (2023). The importance of terminology, lived experience inclusion and scientific discussion regarding end-of-life care in anorexia nervosa: A response to Gaudiani et al. Journal of Eating Disorders, 11:145. DOI: 10.1186/s40337-023-00872-2 [Full text available for download at:]
Gaudiani JL, Bogetz A, Yager J. Terminal anorexia nervosa: three cases and proposed clinical characteristics. J Eat Disord. 2022;10(1):23.

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About June Alexander

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As founder of Life Stories Diary my prime motivation is to connect with people who want to share their story. Why? Because your story is important. My goal with this blog is to provide a platform for you to share your story with others. Building on the accomplishments of The Diary Healer the Life Stories Diary blog will continue to be a voice for people who have experienced an eating disorder, trauma or other mental health challenge, and provide inspiration through the narrative, to live a full and meaningful life.

My nine books about eating disorders focus on learning through story-sharing. Prior to writing books, which include my memoir, I had a long career in print journalism. In 2017, I graduated as a Doctor of Philosophy (Creative Writing), researching the usefulness of journaling and writing when recovering from an eating disorder or other traumatic experience.
Today I combine my writing expertise with life experience to help others self-heal. Clients receive mentoring in narrative techniques and guidance in memoir-writing. I also share my editing expertise with people who are writing their story and wish to prepare it to publication standard. I encourage everyone to write their story. Your story counts!
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5 Responses

  1. Dina Davis says:

    I absolutely agree with this response. At age 15 I was given 2 months to live because I had (“terminal”) anorexia nervosa. Because I didn’t want to die, I fought hard, with the help of a child psychoanalyst, to cling to life. If my illness had been called “terminal” I might have succumbed. My story is told in “A Dangerous Daughter” available online or from bookshops.

  2. Anne Parker says:

    I’m writing as a 51-y-o who has lived with Anorexia (AN) for 35 years. I have been hospitalised two to four times a year through all these years. I no longer believe that I can substantially recover and my ability to keep enduring this existence is finite. I feel there is little help out there for me.

    As things are at the moment if I present to a public hospital with a BMI under 14 I will be automatically scheduled and likely face Nasal-Gastric feeding. Inhumane may not be the best word but it is certainly traumatic for someone who doesn’t want their existence simply prolonged. This policy just alienates me further from treatment and feeling all the more hopeless and alone with my pain.

    I strongly believe there needs to be an alternative, a different set of policies/procedures/ protocols that are widely accepted and used in cases such as mine.

    I agree terminal AN isn’t a good term, implying death is inevitable not just possible or likely. End-of-life care or palliative care may be more acceptable but whatever it’s called it needs to be there as an option.

    What would it look like? For me, it would include enough medication to dull the eating disorder voice in my head, pain relief if needed, eating sufficient for basic everyday functioning and access to non-judgemental psychiatric and medical care as needed.

    I also add that Chapter 14 in the book Managing Severe and Enduring Anorexia Nervosa, A Clinician’s Guide

    (Edited By Stephen Touyz, Daniel Le Grange, Hubert Lacey, Phillipa Hay, and published by Routledge in 2016)

    contains discussion on the role of palliative care in SE-AN which is worthy of consideration in future discussion.

    In conclusion, at present the only options available to ED sufferers are aggressive recovery-based programs or to disengage totally with treatment. There needs to be a middle ground for those who want to hold on to a little hope within boundaries they can cope with. Terminal AN is perhaps not the best term for this. End-of-life or palliative care may be more acceptable – such care would be potentially lifesaving if available.

    • June says:

      Dear Anne,
      Thank you for contributing the knowledge gained during your 35 years of experience to this vital discussion.This paragraph is especially one that our health providers and health professionals need to read, and heed: What would it look like? For me, it would include enough medication to dull the eating disorder voice in my head, pain relief if needed, eating sufficient for basic everyday functioning and access to non-judgemental psychiatric and medical care as needed.
      With love, June

    • Sharon says:

      Dear Anne

      Thank you for your honest reflection on enduring a relentless illness for a long period of time.

      I completely agree with your assessment of current treatment models.

      I also wish to add that treatment is often designed for young patients who have not already been scarred and deflated by systems of treatment. This approach can feel paternalistic to an older patient who already feels out of place bearing an illness that people don’t always attribute to people beyond their 20s.

      Although most days I don’t feel any hope that my life can improve…for some unknown reason by body refuses to give in….so I struggle on also hoping that something will shift within me and life will change…

      • Anne says:

        Hi Sharon, Thank you for your reply. I totally agree. The average age in most inpatient programs is under 20 and this is the demographic the programs are aimed at – even the majority of nurses are in their 20s and 30s. This leaves older (and often chronic) patients feeling out of place and misunderstood. These patients therefore turn away from mainstream treatment which perpetuates the problem – there are few people on the inside to push for change. And so it goes on. It’s hard to think of a solution.

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