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Considering "terminal anorexia" from a patient perspective: my talk for the International Conference of Eating Disorders, 2024

This blog is a write-up of what I had planned to say at the ICED 2024 conference in New York on Thursday 14th March, 2024. Unfortunately, I struggled with the time pressures and setting, and the subject matter left me approaching the talk with a sense of deflation and frustration. I was however really happy to be able to contribute and with the generous reception I received.


I hope that by publishing my talk here it gives those who were not there a chance to engage with the ideas I was advocating for, and for those in attendance to read a clearer presentation of my thoughts on the subject. Thank you so much for reading. Feel free to share and you are welcome to get in touch at jamesldowns@gmail.com with any questions. James





Introduction


Hello! I wanted to start off by saying that I have mixed feelings about being here presenting at this conference today in New York. I wanted to thank everyone for coming - it is deeply heartening as someone with an eating disorder who has been remote from the healthcare and knowledge I have needed to recover to see so many people who care about this subject and can offer so much to patients like me. It means a lot to know that you exist, and that you have so much to give.


On the other hand, it is deeply saddening to be here to talk abut the subject of anorexia nervosa as a terminal illness, and I wanted to acknowledge that. I would much rather be here offering my creative ideas, enthusiasm and energy for what works, what helps, and the transformation that can happen for those with even the most severe and longstanding illnesses.


I want to also thank the organisers for privileging the role of voices with lived and living experience in discussing this subject. I haven’t got any slides - I will be simply talking from my own experiences which involve of a decade living with severe anorexia, followed by a decade or more of severe bulimia. I just want you to listen.



Terminal anorexia: a useful concept for questioning where we are as a field


Whilst I regret the need to cross the Atlantic to say that perhaps we shouldn’t be allowing people to die, raising the possibility of anorexia as a terminal or progressive illness with stages towards death is a useful exercise. It’s not useful because it’s a path we should follow, but because it might help us to understand how we have got here. How has it come to this? And how can we move forwards together?


Listening to the previous speakers, this subject undoubtedly encompasses nuanced experiences and complex ideas. Such is the degree of mental gymnastics required in order to stretch our minds around some of the arguments we have heard in favour of anorexia as a terminal illness that I am left at times wondering where some of the basic principles and values of treatment are, amongst all the contortions and tying ourselves in knots in order to justify a response of assisted suicide for patients with longstanding and severe illness.


The basic ideas and values I will talk about today can sometimes get lost in what I would describe as the diagnostic drift which seems to have emerged in the field of eating disorders in recent years. The fact we are having this debate has led to a lot of reflection for me about where we are as a field, and what we can say about the quality, rigour and ambition of the field of eating disorders at a time when a relative nosological free-for-all means whole new categories and models of illness can be proposed on the basis of a few case studies. This time when we see a reach for terms not only to describe but to define a patient’s experience, bringing into being new quasi-diagnoses without a wide range of patients being involved, which are sometimes driven more by the needs of service providers than the needs and desires of patients.


A time when our field can take a hypothesis and confuse it for theory, theory upon which to base so-called evidence based practice. When we reach for adjusting the conceptual parameters of illness prematurely, rather than focussing on reshaping the conventions and parameters of current treatment provision which too often say you have to be the right amount of sick, in the right ways, at the right times, from a certain background, using the right terms to explain your illness, - to get any semblance of treatment at all. Never mind timely, well resourced and effective treatment.


A time when too often decisions are made about patients, without patients. When we don’t always remember that there is so much we don’t know about eating disorders and their treatment, especially for diverse groups and populations underrepresented in research. This, then, is a dangerous time.



Systemic problems that are deflected into patients


In my own experience, these systemic problems do not get as much airtime in clinical settings as they deserve. Instead, features of patients - and often their deficits - take centre stage as explanations for treatments not working in the ways that we would hope. For example, I have been told that I am resistant to treatment, when the vast majority of the time, services have resisted treating me. It was over 7 years of anorexia before I had any specialist treatment at all, during which time I was just patched up physically and told I would live with this anorexia for the rest of my life, if I was lucky to survive. It turns out I did survive and I don’t have anorexia, despite what I was told with so much certainty by people who didn’t know better. I’ve been told that my illness is untreatable, when that simply cannot be said because treatment with adequate resources and intensity and appreciation of my wider health needs has never been tried. I was told that “we have tried everything”, but this actually meant, “we have tried everything that is available to us”.


These are examples of how, too often, deficits in our understandings and responses to patients with eating disorders are deflected into patients themselves, and painted as features of their illness rather than the ecosystem of care that patients are in. This is ultimately stigmatising, and blaming, but it also deprives us of opportunities to address problems that are not features of intractable psychiatric condition but of the context in which care is delivered. A far greater degree of reflexivity is needed, and honestly with patients and ourselves.


I don’t draw out these tensions in order to exacerbate a divide between the those needing care and those providing care, or to lay blame in any direction - I am not suggesting patients are infallible or without psychopathology, but cannot be entirely responsible for treatment not working in the way we would like. that is simply not helpful, and I wholeheartedly believe that we all do the best we have with the resources available to us. We need to think about these problems all together and see we are all in this resource-starved system together - and I mean resources in the broadest sense.



The example of “severe and enduring eating disorders”


I think a really good example of what I am talking about in relation to devising terminology that reshapes system illness as patient illness comes a step before even thinking about T-AN. That is, with the term SEED, or “severe and enduring eating disorder”. It’s important to state a few basic things here. Like T-AN, SEED is not a diagnosis - you cannot be diagnosed with SEED. Similarly, there are also no clearly defined stages of illness that are progressive towards death - the evidence is not there.


SEED is a well-meaning term, but is one that was made up without patients to solve a clinical problem of needing to categorise patients. And we do need to categorise patients in order to give the most appropriate care to groups that can be wildly different in presentation. But it needs to be done in collaboration with people with lived experience, and attention needs to be paid to goodness of fit of our healthcare provision for patients who may not fit a stereotypes. And we need to provide flexibility in how individuals with the complex and individually unique lives encounter services.


If we think for a moment about what the term SEED actually means, it comes from the Latin - “en-durus” - or “hardening”. To say that someone has an illness that has endured until this point is an accurate description. To say someone has an enduring or hardening illness is predictive of it worsening, which is not provably the case if there is something that may change or interrupt their illness - for example, treatment. There is such a thing as unresolved illness, maintained illness - to this point - but the word “enduring” has intractability built in. I will return to the idea of prognosis and predictability later.



Language matters


I think you can tell that, for me, language really matters in considering this subject. The term SEED has inadequate evidence to be a theory, and is disliked by many patients, yet in practice, it is now used widely and informs whole care pathways and the ways in which we are encouraged to think about illness. We have used it today, without challenge, even though the group knows that the patient amongst us doesn’t want to use these terms. To offer something more constructive, I prefer to use the word “longstanding”. This doesn’t have intractability built in - it is more descriptive, not predictive.


We need to ask patients about the language they would like to use in creating shared understandings together, rather than impose. Too many patients with eating disorders have long felt like things have been done to them. It’s time we create-with. Instead of focussing attention more on patients lack of recovery and enduring illness, we might also consider spending as much time naming and giving language features of healthcare systems and their evidence base which enable illness to endure for so long in the first place.


Thinking about what we have seen with the concept of SEED,  I wonder whether this is where we are heading with SE-AN and T-AN? And why is it just anorexia? Why do we not hear about SE-BN, or T-BN? My suspicion is because it presents more of a clinical problem rather than it being something inherent about the illness of anorexia itself. In my own experience, anorexia has been more obvious, more interesting, less disgusting to clinicians. Even, more alluring. It has not been more severe, or more distressing, or more intractable, or posed more risk to my mortality. The way we talk about the anorexic patient is couched in reverence, as though they hold some unique kind of insight about the nature of suffering and decisions that ought to be made that sits outside of conventional, universal values underpinning medical practice.



Anorexia is not special


This is where I turn to perhaps the most difficult part to talk about. I want to remove discussion of anorexia from a unique, special corner of psychiatry that treats it differently from other mental illnesses. Anorexia is not unique. There is not a specialness about it. Anorexia is a particular kind of suffering, but it does not lay claim to a unique amount or level of suffering. But it doesn’t stand up that anorexia is special, or the only eating disorder that will lead to death. I have heard others on this platform talk about how anorexia is the only eating disorder that will certainly lead to death if unabated. This simply does’t stand up, the uninterrupted depletion of electrolytes in bulimia (in my experience) will also lead to death. The comparison with bulimia reveals the hierarchy of stigmas in eating disorders, and there are two sides of the same coin when it comes to stigmatisation on the one side, and fetishisation on the other. Whilst anorexia is stigmatised, it is also, I think, fetishised, for its purity, restraint, apparent specialness. Can we separate our views of these behaviours from our cultural values and history?


There are important, and difficult questions as to why clinicians may potentially be seduced by the features of anorexia. Why do we give expressions of a wish to die by starvation so much credence? Let’s be clear, it is pathology, and it needs treating. It does not warrant any special reverence. This is not the same as saying we shouldn’t listen to and validate patients and their apparent wishes - we absolutely should, but the wishes of someone who says they want to complete or be assisted in suicide by starvation shouldn’t be accorded decision-making power. I think we listen to the desire for death too much. I have been suicidal with anorexia and told “we can’t stop you”, or, “you know what you are doing to yourself”. We can and should stop people from dying. In other branches of medicine, saving lives is seen as one of the best jobs you can do. Why should things be so different in eating disorders?


I do not believe that severely malnourished patients with longstanding and severe illness have the capacity to make decisions about ending their lives. I didn’t. This can even be on the basis of low electrolytes alone, as I have experienced even very recently. My perspective of the world is radically different with adequate nutrition, and whilst arguments for palliative care pathways talk about according patients rights, that doesn’t mean patients are always right. Similarly, arguments for medical assistance in dying on the basis of terminal mental illness suggest abandoning more conventional treatment goals - at least temporarily - in favour of focusing on quality of life, centring patient autonomy, focussing on relationships and valued experience. They evoke a unique brand of compassion and empathy that evades the rest of us.


But just like we should not peel off groups patients from conventional ethical frameworks to justify the clinical problems we have, we shouldn’t fragment components of treatment and silo ideas such as “quality of life” as somehow oppositional to recovery-focussed goals. There are no special claims on any of the qualities of good treatment by those who propose anorexia as a terminal illness - they should be part of ALL treatment. All treatment should be palliative, preventative, and offer early intervention. Early intervention for example needs to be reimagined to not just refer to early in the course of illness - we can intervene early for the patient who is seeing the doctor for the 20th time that year having developed an eating disorder three decades ago.


It’s worth saying, by the way, that quality of life improves with recovery.



We cannot predict anything other than, perhaps, change


And this leads me on to the ideas of prognosis and prediction. I think it seems both mean-spirited and illogical to put our efforts into proving who will beyond doubt not recover. We simply can’t. The context in which people engage in treatment is never the same twice. Yes, people need to have a different experience not repeat the same things in the same way over and over again, but our nature is to change. Our nature, I would argue, is change - however intractable things might seem, we are always capable of change under different conditions.


Remembering that eating disorders are embodied experiences, I think that too many patients are not given the chance to have a different experience of being their body in the world. In my own experience, I may not be recovered, but I know that radical change is absolutely possible. The majority of psychological symptoms have resolved with better nutrition, and an understanding of my cooccurring conditions such as ASD, ADHD and Ehlers Danlos Syndrome has been vital to giving me a basis of a life worth living. It might feel like “we have tried everything”, but this is very unlikely to be true, at least in the sense that this can only be true for any given moment. More options may be available in future.


They say that the definition of madness is to do the same things and expect different results. I'd say that in some cases at least a component of unresolved mental illness is in failing to appreciate that it’s not just about what you do, but how you do it, and that the qualities of any intervention are as important as it being “done”. Other ways of being are available, including in relation to being in treatment. This idea that all interventions have been tried also forgets that a key ingredient of relationship, the vehicle for all treatment. All interventions are delivered in the context of relationship and we never have the same relationship twice (- sometimes I am very glad that I cannot have the same relationships twice!)  I think an appreciation of the importance of relationship means we need go be more creative with roles such as peer support, incorporating family members, and building a more comprehensive team around patients that extends the multidisciplinary team to include artistic, creative and body-based somatic practitioners.



(All) patients want to be well


I fundamentally believe that all patients want to be well, that this has to be our baseline assumption. Somewhere in the mix, we all want to be well. It might not be visible, and the will for things to end might be entirely dominant and wholly convincing. But that is never the the whole story, and we need to engage with the part that wants to be well, however tentative and overshadowed it may be. If patients like me don’t want to be well, or actively want to be unwell, that suggests either the presence of psychopathology, which can be treated, or lack of belief that they can be meaningfully supported to be anything other than unwell. Or both.


Why would you want to try and recover if it doesn’t seem viable?  It is the job of healthcare providers and researchers to show a way forward to recovery and give adequate support to follow that path for however long it takes. It seems like a palliative care pathway is more acceptable for everyone involved - not that it is an easy way out, but a solution to problems that are presented by unhealthy systems.


Making the treat-ability and recoverability of patients unreal means we don’t have to confront the painful reality of underserving patients who are capable of living radically different lives from what they are used to. It cannot be that the solution to redefine their illness as non-responsive to treatment -certainly, without any doubt. And there’d have to be no doubt, because the idea that we are taking a chance on people’s inherently valuable lives is unconscionable. It is just not possible to identify who will not respond, forevermore, irrespective of what might change around them or within them. I wonder what professionals outside of eating disorders would think of this discussion. The ones I have met can’t really understand it, and are we to suggest that their brand of medicine has an alternative framework or that they don’t benefit from the received wisdom or intelligence to comprehend some of the arguments we have heard?


This whole discussion is unbelievably premature. Especially in the context of a conference like this where over the next days we will all come to appreciate that new knowledge is emerging all the time. There will be more options, soon, hopefully.



Do we need hope, or faith?


This brings me to my last point, which is about hope. Now hope is something that I am not massively in favour of. Yes it is nice, it feels like a good thing, but for risk of getting all philosophical on you, I want to remind you of Pandora’s box, which unleashed evils into the world and the last thing that remained was hope. I wonder why hope was in the box in the first place (and Nietzsche would say that it is perhaps the greatest evil of all..!) For me, hope is too passive, not convincing. I don’t want to hope for the best, or hope that perhaps this treatment will work this time, or maybe something will come along that will help. I want to believe that it will! Your job is to offer knowledge basis we can believe in, where patients like me can believe and know that we will get better if we are supported to.


We need to build systems that we can have faith in. We need to resist reaching for mental gymnastics to somehow justify a fundamentally and multiply flawed solution to the very real problems we face. Problems we need to be honest about with ourselves and with patients and their families. We need to have ambition for rigour and working out what specific interventions work for which patients and when, as well as trust in underlying and universal values that are universal for all patients, irrespective of their presentation. And we must do all of this with patients.


Something I am surprised that we have not mentioned today is the inalienable value of life. Instead of asking “what amount of suffering is too much?” our focus should be on how much we can do - how much awful and compulsory treatment we can sustain (which is not the same as coercive treatment) for even the faintest and improbable goal of life.


The lives of patients and and potential for life are not something we can or should weigh up.


Thank you.

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