June 3, 2012

People are individuals: eating disorders, not so much

I was commenting on Carrie's blog yesterday and had a bit of a foot-stomping moment.


"Eating disorders are not individual to each patient: each patient is an individual. Let's not confuse that. All diseases and disorders present differently person to person but the whole power of a diagnosis is using the data we have about that phenomenon to help guide how we help the patient.

We don't treat diabetes as if each patient needs a unique diagnosis and treatment plan. We don't throw up our hands and say we can't make decisions about treatment of cancer because each case is different.

I'm sorry, but I'm tired of the assertion that nothing can be known with these disorders. It's a refuge for poor treatment and hopelessness."


No one is trying to pigeon hole or depersonalize people or their treatment. We're hoping to use data to HELP inform decision-making for VERY SERIOUS CONDITIONS. Starting with the data doesn't limit us to the data it just starts us at a common point of reference. Then, we individualize and adjust as needed.







6 comments:

  1. Please don't think that I am criticising or being pedantic... but how do you know that eating disorders are not individual to each patient? Where is the empirical evidence to support that assertion?

    In the future it may be that EDs are categorised into various subtypes by brain imaging data or biological markers, just as cancer is part;ly categorised by cell type. However, at present EDs are diagnosed on the basis of behaviours (and in the case of AN, additional low weight or significant weight loss).

    There are many things that we call (e.g.) prostate cancer or breast cancer. Some of these cancers are hormone-dependent; others are not. Some are more easily treated with greater life expectancy. And so there is no one-size-fits all treatment for either of these cancers if they are delineated by their names.

    Surely it is even more complicated with EDs, because EDs affect the mind and the eating behaviours affect the brain. Most importantly, EDs affect sense of self; yet sense of self is determined by years of sensory input to the brain and processing within the brain.

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  2. It is fine to criticize and to disagree. But your examples are exactly the point. We don't treat all patients with breast cancer the same way because there are many types of cancer and each person's situation is different. But we don't just randomly apply things: we use the research that has been done to help decide what works for whom. RIght now we don't know how to parse out EDs except by the crude AN BN EDNOS categories. The way to further that is by developing and researching treatments and seeing what works for whom: just as we did with breast cancer.

    Right now there is almost no research on eating disorder treatment, and the research that has been rigorously done is not only not used it is treated as equal to or less than the rest.

    When we DO have data to help us understand the differences between subtypes then we can further personalize treatment.

    NO ONE IS TALKING ABOUT ONE SIZE FITS ALL. All I'm saying is that the evidence should be considered when making a CHOICE among options. That is reasonable, humane, individualized choice. Choices and options: not the fashionable treatment of the month or the one a clinician likes best. All reasonable treatments should be available, but the choices shouldn't be random.

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  3. Yes, but as I said above: How do you know that eating disorders are not individual to each patient? Where is the empirical evidence to support that assertion?

    I am not sure that we will ever be able to make comparisons between EDs and organic diseases such as cancer and diabetes. I do think that some researchers (neuroscientists) believe that this will be possible; however I'm really not that sure. What we do know is that for a proportion of people with AN, the symptoms are alleviated by adequate weight gain, adequate nutrition, the motivation to eat adequately and to maintain a healthy weight. But this is not true for other former AN patients - who develop BN or BED during re-feeding, or struggle with co-morbidities (e.g. BPD, PTSD, ASD, OCD, GAD, bipolar affective disorder etc.) that feed into their ED. Sometimes, treating the co-morbid illness can assist with treating the ED.

    And then there are some people who seem to just decide that they're sick of their ED and get better - almost of their own accord. I know at least 6 people who have had a life-changing experience that has made them realise that living with an ED is no life. Two found a partner and wanted life more than their ED. Two found successful careers that made them feel so fulfilled that they were able to recover of their own accord. The other two were told they would never recover and were so angry that they started to eat to gain weight just to prove their therapists wrong!

    I do think that part of the key to recovery is motivation to change. I know that after 28 years of AN I desperately wanted to change, to get better and to have a life. The main reason for this was that I was so physically sick. I couldn't get out of bed some days - and when I managed to get out of bed and dragged myself into work I would end up collapsing and being carried off to the health centre. But I simply didn't know how to eat without anxiety, or how to live without AN. Six years on I am much stronger, but it has taken me a long time to get to where I am now. I still have to work at recovery, because I am prone to extreme anxiety and depression - and it is the anxiety and depression that trigger the anorexic thinking.

    I didn't make reference to a 'one-size-fits-all' approach above, but rather to a possible role for individualised treatment.

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  4. Of course the disorders are individual to the person, but two people with the same diagnosis have things in common by definition. The whole idea of a diagnosis is to use that commonality to help guide decisions for care. The value of research is in testing hypotheses about what can be effective. The value of disseminating the data - as we are trying to do when we point people to the evidence-base for FBT - is informing decisions, not cutting out options.

    I agree that motivation is important but I don't think it is fair to expect it or wait for it. People should not have to spend years ill or be dependent on miracles.

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  5. "The value of research is testing hypotheses......etc." Um yes. I have a PhD and published papers; I know these things.

    The reason I mentioned motivation is not because I am expecting people to find it on their own. Most do not. But perhaps therapies need to focus on motivation to change - because those people who do eventually recover from an ED do find that motivation. It is not a choice, as such, but they either dare to try living differently, or they actually desire a life free of ED. We know that AN (BN not so much) is egosyntonic.

    To employ FBT, IP treatment (etc.) time and time again to people who cannot see a life outside of their ED is futile. It is like keeping people on a life support machine. That 'life support' is often needed to increase weight and to de-sensitise people to the stress of re-feeding, but ultimately a person needs to find a life that they feel is worth living.

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  6. I believe lack of motivation is often a symptom, one that often abates with full nourishment for many months. Not always, of course, but insight and motivation and ability to engage with treatment are generally impaired during and for a while after malnourishment or erratic nutrition. In other words, I think motivation is often a sign of dawning recovery, rather than the driver.

    I disagree that FBT and IP are like a life support machine. I frame it more as a crutch allowing the person to regain strength and begin the process of finding that life they feel is worth living. If the FBT or IP is too short an intervention, or doesn't take care of co-morbid issues or lifestyle issues, then they do just function like life-support, or worse: just taking a drowning victim out of the water long enough to get the heart started again and throwing them back in. It takes more than short term refeeding to treat an eating disorder - it takes comprehensive multidisciplinary support over a long period. IP can rarely provide that, so family needs to be ready to be that long-term bridge.

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