Treating chronic EDs

Reading this article about chronic eating disorders and treatment resistance left me rather depressed. To some extent, chronic eating disorders aren't exactly the most uplifting thing to think about, and I didn't expect this type of article to give me the warm fuzzies. But after reading this article, I wanted to find myself a Prozac salt lick. I mean, holy leaping downer, Batman!

But the more I thought about this article, the more my depression became anger and, yes, a reasonable helping of confusion.

The article, from Psychiatric Times*, was an examination of the issues presented by chronic, treatment-resistant patients. It seemed to me that this piece raised the same issues as an article about palliative care for anorexia by Michael Strober, although in a slightly less technical way. Write authors Alan Kaplan and Kate Strasburg:

There is an ego-syntonic pursuit of thinness in patients with eating disorders; what clinicians see as symptoms to be treated, patients see as lifestyle choices to be pursued. Issues of trust are prominent in patients with anorexia nervosa. As a consequence, these patients have difficulty in establishing a therapeutic relationship.

The change in focus to quality-of-life issues and away from ego-syntonic symptoms helps solidify the therapeutic alliance with caregivers and tends to decrease the power struggle that so often characterizes the relationship that develops. Strober outlines interventions that are useful for clinicians who treat these patients. Most important, he emphasizes the necessity of reassuring the patient that weight gain is not a primary objective and that steps toward weight gain are both collaborative and negotiable. Similarly, nutritional improvement should only be addressed once a therapeutic alliance is well established.

When efforts are made for weight gain, the goal may be to achieve a safe weight that is acceptable to the patient and compatible with medical stability and staying out of the hospital. Collaboration between therapist, dietitian, and patient is essential before the implementation of any nutritional changes. A caloric goal of about 1200 kcal per day is often useful because it can be achieved by most patients and will not lead to significant weight gain but may be adequate for medical stabilization. Liquid supplements can reduce the osmotic load that accompanies the intake of solid food and that causes bloating and fluid retention in emaciated patients with anorexia nervosa. Such patients require medical monitoring by a primary care physician, including a full medical examination, regular laboratory measures, and ECGs.
I'm not against focusing on quality of life issues as a way to start engaging someone in therapy; in fact, as the symptoms themselves can be egosyntonic (or at least partially so), it makes sense that a therapist might want to start helping a patient look at ways to improve their life. But not as a replacement for reducing--and eventually, working to eliminate--eating disorder symptoms. Because as long as ED symptoms are present, quality of life is going to be very, very low. No one would attempt to treat cancer without removing the tumor, so why you would address anorexia without addressing the low weight is really, truly, utterly beyond me.

I think Dialectical Behavioral Therapy (DBT) takes the most optimistic and realistic approach to achieving behavior change. DBT assumes that patients would want to get well if they could. Their illness (be it Borderline Personality Disorder or what have you) makes it difficult for them to want to get well. So the treatment providers take on that desire for the patient until the patient is able to do so. When ED patients don't improve in outpatient therapy, it's usually chalked up to "they don't want to get better" rather than "they are unable to get better." Another DBT tenet is: patients don't fail therapy; therapy fails patients. Of course people with eating disorders are treatment-resistant. It's almost part of the definition, just like people with depression are sad and people in the manic stage of bipolar disorder are hyper-energetic.

I think SO MUCH progress could be made in treating eating disorders if we stopped conflating treatment resistance with not wanting to get better. People with eating disorders do want to get better, it's just that their illness makes them unable to want to get better. Treatment resistance is as much a symptom of ED as restricting, binge eating, and purging.

In a previous blog post, I quoted Dr. Sarah Ravin and feel that it's worth repeating:

"I view [palliative care for AN] as a manifestation of both failure and inferiority. Failure on the part of professionals who fear an emaciated patient’s wrath more than they fear her death. Failure on the part of a profession which espouses the dogma that avoiding premature termination of treatment is more important than avoiding premature termination of the patient’s life. Failure on the part of a philosophy that values nurturing the therapeutic relationship more than it values giving a patient a fighting chance at life, health, and happiness. These patients have not failed treatment. Treatment has failed them."

And yet, I can't imagine how humbling it must be for a clinician to have to accept that they might not be able to do anything for their patient. Not because they don't want to help, but because our culture is not equipped with the challenges of treating eating disorders. It's not. We expect people to be able to choose to eat. We expect that weight restoration will cure the eating disorder. We expect people to want to get better. We expect people to ask for help when they need it. We expect people to be rational enough to make responsible decisions. Which are good assumptions, most of the time. An ED isn't most of the time.

The longer an eating disorder has gone on, the harder it is to treat. And not all EDs will respond to currently available treatments. These are facts. A long-term eating disorder may very well change what recovery looks like, and what constitutes a return to a productive life, when compared to a young teen who has only been ill for a few months. Many illnesses are the same way, be it diabetes, heart disease or cancer. Many illnesses also don't have a "cure," just like eating disorders. Maybe someone who has had untreated diabetes for quite some time will have more difficulties in managing their blood sugar. Maybe it will fluctuate more, and maybe they'll need more intensive monitoring to keep things stable. They might even resist all of the blood sugar testing and doctor's appointments. But that doesn't mean we throw up our hands and say "Sorry, pal. You're on your own."

People with eating disorders already feel hopeless. The last thing I or anyone else needs who is struggling with an ED is to be told that the best thing we can do for you is prolong your miserable life a little bit longer until the ED kills you anyway. Maybe your miserable life will be a little less miserable because we've dealt with Quality Of Life Issues, but that's what you wanted. Um, ouch. I needed clinicians and caregivers to believe in me and my recovery, to say that there is not one reason why you can't get better, to want my recovery for me until I could want it myself. I still need people to believe in me and my life and my ability to get better.

Ultimately, what this article says is that we suck at treating chronic eating disorders. And no matter how you slice it, that's pretty depressing.

*I swear they're not paying me to promote their journal. Although I'm open to monetary donations should they (ahem) feel so inclined (ahem ahem).

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12 comments:

Kim said...

This is a great post. I was nodding my head excitedly when I read this: "I think SO MUCH progress could be made in treating eating disorders if we stopped conflating treatment resistance with not wanting to get better. People with eating disorders do want to get better, it's just that their illness makes them unable to want to get better. Treatment resistance is as much a symptom of ED as restricting, binge eating, and purging." YES! The thing is that eating disorders are one of those weird diseases when "getting better" feels wrong. Most illnesses don't work like that, of course. Understanding that treatment resistance is just part of the illness is HUGE. I don't feel like people really understand this fully. I remember telling my family now much I wanted to get better. The next morning, they put a plate of pancakes in front of me and I started crying and said, "I can't." There were lots of frustrated sighs. It's just not that simple...
Also, I like what you said about changing ideas of recovery as the illness evolves. My definition of recovery is entirely different than 20-year-old Kim's definition of recovery. I understand myself a lot more. I like the comparison you made to someone with untreated diabetes. Like you said, we wouldn't give up on this person; the expectations may be different, but we wouldn't just walk away. I think it comes down to people seeing eating disorders as an active choice. It's assumed we can choose to eat and be well, so we don't deserve more help. There's are so many messed up ideas about willpower and mental illness in our culture, that's for sure.

Carrie Arnold said...

Kim,

My idea of recovery has evolved, too. I've been meaning to blog on it for a while, and maybe I'll have to do a full post on it later today/tomorrow.

Telstaar said...

I read the article yesterday also and I was both glad and horrified at the same time! I had a similar reaction to the palliative care article when it came home.

I guess in one instance, having someone not have such intense guilt and be thoroughly supported and to be as comfortable as they can is a good thing... I liked the article mostly because it provided a more holistic approach to patient care which is positive.

I was horrified by the article for most of the reasons you mention. I feel for someone that is kept alive (barely) but for whom most people have given up hope of getting better. I'm not sure being alive is worth it... other than the hope of a better life (because this is a CRAP illness).

I was told late last year that I was entrenched in the eating disorder and basically the pdoc's answer was for me to very very slowly MAYBE try and live life a bit more... NOT HELPFUL when I'm already feeling unhelpable. Whereas my currently counsellor's perspective is that we will just keep trying each alternative until something works, we will try to be proactive and reduce harm and risks where we can and for this reason I have been allowed to stay at a lower than optimum weight for awhile, but at the same time...its not about never recovering, its about finding a balance while i AM recovering... it makes me sad that people will write others off.

Early last year, I worked with a lady who'd had AN with b/p for 30 years. She was in hospital for depression and ECT treatment but in that entire time, she'd NEVER engaged in counsellor to treatment for the eating disorder! Mostly she didn't think it was possible for her to get better and she didn't feel worthy of treatment. I spent about 6-7 weeks with her 1-2 per week just going through the motions of my research (but with compassion) and by the time I left, she told me that she had spoken to her pdoc about entering the EDP at the same hospital (different ward)!

To me she gives me hope because all I did was believe in her and show her compassion... when she had some hope, she wanted to try and recover. So yeah... the article is good in providing a cohesive and coordinated approach... and its awful in the sense of writing people off, writing them off to a life that does not represent quality at all.

Carrie Arnold said...

Telstaar,

You're right- compassion is SO important. Because as much as I don't want a clinician to ignore my ED symptoms, I'm also NOT THE ED. I wish more people realized how important this was.

I'm thrilled you were able to get through to the lady- how empowering that must have been!

Carrie

I Hate to Weight said...

i agree with everything you wrote.

also, how can you expect someone who is literally nearly starving to death to have clear, defined ideas about her recovery? the brain is working in completely different ways at that point.

Katie said...

This is something that really upsets me. Harm minimisation plans to medically stabilise patients at low weights and calorie intakes are common in the UK, and not just for older patients who have been unwell for years. I know several people who were put on such plans in their early twenties. It makes me so angry, because I KNOW long term anorexics who have eventually recovered on their own, but not before untold damage has been caused. To a lesser extent I'm one of them - I had an eating disorder for 13 years before recovering on my own, I've gained almost 40lbs as an outpatient in the last year. I didn't have the option of specialised ED therapy or medical treatment because I'd already been through treatment and had been judged to not want to get better. I'm only 25, but I've been told since I was 18 that I was unlikely to recover from any of my problems, I should learn to live with them instead, and last year that getting to a healthy weight was out of my reach (proved them wrong on that front!). People ARE capable of changing and they DO change. They might get there quicker if they weren't written off by the services. I absolutely see not wanting to recover as part of the illness - just like the fact that many people with bipolar disorder idealise manic states and don't want to take meds is part of their illness. So many mental illnesses involve startling similar thought processes, and it can lead to tragedy when those thought processes are treated as wishes and right rather than symptoms that will actually go away with treatment. I think part of the problem is aftercare. It's not enough to GET to a healthy weight, people have to stay there and they need support to do that. Too often people are discharged from treatment at borderline healthy weights, relapse, and are then treated as chronic despite the fact that they weren't given a chance to discover if their symptoms would abate with time and therapy. I know there's a session at the Eating Disorders International Conference in London next month entitled "Severe and enduring eating disorders: a need for new ideas?" and I would love to be a fly on the wall for that. I have a friend who works for Janet Treasure so I might see if she can spy for me :P

Thank you for writing about this Carrie, I think we have the same position on the subject, and it's one I feel incredibly strongly about given that it's such a common treatment approach for adults over here in the UK.

Katie said...

Oh, and this is totally off topic, but I noticed this study quoted on Jezebel earlier and wondered if you'd read it. It apparently contains the statistic that 9.2% of adult women in the UK have an eating disorder when bulimia and EDNOS are taken into account, but I can't read it because my computer is playing silly devils. Since I don't think I've read that fact before I thought it might've gone unnoticed when it was published last year. I'm sure I'd find it interesting if I could just get it to open! http://www.ic.nhs.uk/statistics-and-data-collections/mental-health/mental-health-surveys/adult-psychiatric-morbidity-in-england-2007:-results-of-a-household-survey

EvilGenius said...

I absolutely agree with this. 'Palliative care' and 'harm reduction' for eating disorders make me so angry. Sure, I used to love it when I was ill - funny that, seeing as it's a mental illness, with, as you said, fear of recovery as a symptom. I was told at the incredibly advanced age of 21 that maintaining an emaciated weight was 'better than revolving door hospitalisations'. Yes, cheaper, I get it. condemning someone to a life of chronic debilitating illness like that is pretty negligent in my books to be honest, especially if it's purely on the grounds of their 'ambivalence' and 'severity/entrenchment of their disorder'. neither of those things make people hopeless.

Abby said...

Brilliant. That's all I got because everyone else pretty much covered it, but brilliant post that should be mandatory reading for everyone in the freaking world that tells you to "just eat."

A:) said...

This is a disgusting concept because ED's do not HAVE to be a terminal illness -- but really, what can we do to stop someone who is bent on destruction?

In a perfect world there would be unlimited and long-term care well past weight restoration and integration into the community for these individuals. But it is not a perfect world and it is difficult to get these individuals into treatment.

Even if they are certified/formed into treatment (I have a friend who is currently in this situation) not ALL will change their perspective on recovery with weight restoration or more treatment. They may leave just as defiant and entrenched as before. I guess parental guardianship is an option.

I agree that no one with an ED who comes seeking treatment should be turned away and that the focus should ALWAYS be on recovery -- no matter how that is attained. It may be that the therapist may need to build the relationship first, but this should aways be done with the awareness that eventually the goal should be working toward recovery.

To tell someone who is chronic that they should try to maintain a low BMI may be OK in the short term (ex. someone who is rapidly losing weight is persuaded to simply maintain) -- but this should not be done in the long term.

A therapist/team holds a LOT of power/authority -- it is not fair for them to abuse this and tell the patient that they are not capable of recovery. The patient may follow the guidance of the therapist REGARDLESS of what they may believe and this is where things become dangerous. They may believe it is the "only way" for them to live their lives because a doctor, therapist, RD, etc. has told them so and is an expert in the field. . .

A:)

balancingontwofeet said...

I agree that treating ED"s with palliative care is dangerous and wrong. If someone had told me years ago that I was going to live the rest of my life in such a "maintaing life" state I would have just crawled into a hole. Like many above my idea of recovery has changed drastically throughout the past 13 years. I don't think there is anyway to anticipate what the next stage of recovery or attempt is going to look like and it is very individual for each person.

I feel like this article portrays ED's as a choice when in face that is so not the case. None of us choose to have an eating disorder, but given the right timing and mental state, we can choose to fight it.

Laura Collins said...

I find the concept of palliative care loathesome and offensive.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote



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