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Tuesday 10 July 2012

Right to life.

I have been busy doing Mummy things and suffering badly with the weather.  Being allergic to one's own sweat makes humidity my enemy and I have lost all energy to do anything other than drive my daughters from pillar to post.  However, this morning I received an email that made my blood boil.

A friend from overseas writes that her daughter, a diagnosed anorexic, has been in hospital for 8 days refusing food, water and medication.  Because she is now 17, the hospital will not treat her in any way without her consent BECAUSE her weight is not low enough.  Huh?

I am hard pressed to find another mental illness where the treatment depends so heavily on the patient's physical health.  I know that a severely low weight is a symptom of anorexia (but not of bulimia or BED) but I fail to see why treatment is contingent on a person's weight.

So I trawled through the brilliant RETHINK's website.  I failed to find what I was looking for: namely, that schizophrenia should only be treated when a patient's physical state had deteriorated to a life threatening level.  So I tried Anxiety Disorder - nope, you can and should get treatment for anxiety disorder without having severely dangerous physical symptoms.  Depression?  Guess what?  You don't need to have physical symptoms to get treatment for that either.

I could go on and on and on but that would be kind of boring because you get the idea.

Why do the medical profession still persist in not treating the symptoms of an eating disorder until they become so severe that a) life is threatened at the most basic level (starvation, electrolyte imbalance, etc etc) and b) the illness is so entrenched that recovery is going to take a much longer time than if the illness was treated by early intervention?

The case of E highlights everything that is wrong with the system and I fail to understand why treatment for eating disorders is neither one thing nor the other.  Treatment needs to be for the physiological as well as the psychological symptoms.  If a patient with depression was refusing food or water after 8 days, would the hospital be refusing to administer life saving treatment in the form of an NG tube or re-hydrating the patient?  I strongly doubt it.

It is time that the medical profession made up their mind about eating disorders and stopped passing the buck to the patient.  The patient is severely compromised both physically and mentally.  Ask yourselves this, if you get an attempted suicide in A&E, do you leave them on the guerney, bleeding to death from self-inflicted razor cuts to their wrists?  If the answer is no, why the hell do you leave eating disorder patients without food and water for days on end?

If you want any more powerful reminder what happens when someone doesn't receive treatment:


  1. Anonymous10 July, 2012

    Your post saddens me, Charlotte, yet it is a brilliant post - in that you examine what happens in other psychiatric disorders and make comparisons with EDs.

    There are many reasons why EDs are not taken seriously enough, misunderstood and badly treated. I do think that one reason is that EDs are seen as a 'chosen' response to living in our culture. The fact that AN, at least, is egosyntonic is unhelpful, because the other illnesses you make comparisons with are egodystonic. The person with AN behaves in a stubborn manner and appears to value their illness. This makes consenting to treatment very difficult.

    As someone who had a long history of AN I would argue that AN is not really egosyntonic, but that the sufferer is: (a) very frightened of intervention because this will increase their anxiety to levels of panic - and - (b) the have a poor sense of identity, poor interoceptive awareness and alexithymia; all of which make it very hard to makes sense of what is happening to them and to express this clearly. People with An just tend to say things like "I'm frightened of getting fat"; but I think that's due to alexithymia.

    On another note, I am sorry that you're suffering in this hot and humid weather :( I think you are very brave.

  2. what ELT said - all of it.

    Treatment for addictions is similar, as the Fairy Blogmother has noted

  3. We COULD solve some of this if the ED advocacy world would come together on it, at least. It infuriates me that we can't. I feel as if this is the central issue I've beaten at for 10 years now and I'm not sure we're that much closer on it. Just suggesting that the eating part is important causes people to back into corners refuse to talk.

    This is the most basic thing, and we HAVE the evidence, but I still don't see consensus or the courage out there to get agreement on it within the field - without which we can never expect the public, the press, our governments, or health providers to understand it.

    I recently had the horrifying thought that I'm going to retire from the field and it still will be years until we achieve this. I think of the next generation of patients who don't get their "right to life" for the lack of one simple principle: food is medicine, not optional.

  4. Good post Charlotte. I am so saddened by Emily's death, as I am also facing that possibility with my own daughter. I too am so infuriated with the 'system' that doesn't see ED's as serious as they really are. I have to wait until my daughter gets so thin and so sick before treatment is 'approved' by the insurance! I think we need a place like St. Jude's for ED's!

  5. How about a letter-writing campaign? Asking someone within the medical profession where this woman's daughter lives to step in? Something? We cannot sit by.

  6. Anonymous12 July, 2012

    It is the same in Greece they will take our daughter in even after being as low as 32 kilos or just not eating for 6 months BUT for a terrorist not eating for 15 days they are dealt with and put into hospital.But we are turn away and told no problem because the blood tests are good.... Here we are on our own. Unless you pay therapists.Even then its only hourly....

  7. Maybe I'm wrong, because I don't follow this too much, but wasn't a draft of the DSM-5 open for public comments? Not sure how that works, though.

    It is sad and ridiculously stupid. I am not sure what the laws are in Canada, or Ontario, specifically. What infuriates me more is that it is not "low enough" by what metric? Not a scientific metric, some idiotic statistics taken many years ago of rich (most white) people who could afford life insurance in the US? What?! OK, I know, I know, it is slightly more complex, sure, but that's pretty much it, I feel, when you get down to the bottom of it.

    It is infuriating that weight matters so much. No one would be able to guess how well or how badly I'm doing by my weight, at all. My best periods have been at weights that have also coincided with some of my worst periods years earlier. It is impossible to tell by looking at me (because I cycle between AN, AN-BP and BN, and BED for brief periods).

    I think the more people write, talk, complain about it. The more people stress mental health education in medical schools, and the more research comes out about eating disorders, particularly the medical complications, case studies, etc.. the more the medical community will start to pay attention. But, like with anything, it will take a while. Homosexuality was listed as an illness until 1974, gender nonconformity is still called "gender identity disorder."

    Change is slow, and unfortunately, a lot of people suffer in the meantime.

    I think the medical profession, in general (of course, not every doctor, but to generalize), suffers from the same problem as the lay public. In my experience, when I talk to people about my ED and EDs in general, they seem to be shocked at the severity of the mental and physical symptoms. Most people don't realize the intensity and life-consuming nature of it. They don't realize how severe restricting, binging and purging can get, and how severely disabling the psychological symptoms can be.

    It just drives me nuts that it is so tied into dieting and body image. I think that doesn't do ED sufferers any favors, because it almost lightens it. Oh, just vanity. She'll eat once she gets too hungry, or some stupid crap like that. My ED didn't start from dieting and I never felt "fat" or wanted to lose weight until I was deep in the anorexic mindset.

  8. Anonymous18 July, 2012

    I agree completely with your sentiment, but think that this argument is a bit flawed. I know the most about Ontario, so I will stick the commenting about what's done here, but I think it translates to many other places. Here, it is very, very common for people with schizophrenia or depression to remain untreated as well. A patient can only be treated against their will if they are considered a significant danger to themselves or others AND are incapable of understanding and appreciating treatment choices, or, alternatively, if they have previously been treated with some success and are at risk of severe deterioration without treatment, and are incapable.

    It seems like these are quite loaded issues tied into abuses of psychiatric patients in the past by institutions, as well as the philosophical direction of our age with its emphasis on autonomy and individual rights. With anorexia, I think perhaps the biggest issue is that patients are often deemed capable when they are not, because clinicians often emphasize the understanding portion of capacity and neglect appreciation. Many anorexics can clearly explain the consequences of anorexia but do not really believe that they will experience them personally, or are emotionally too frightened to exercise capacity (Dr. Charland in London has argued that emotional issues should be included in the determination of capacity). But legally, if a patient is deemed incapable and was at risk of significant physical harm, or if the patient has previously been successfully treated, a patient with anorexia can just as easily be treated against their will as anyone with any mental illness. And like any mental illness, legally you do have to wait until the risk of lasting harm is present before you can take away someone's liberty for mental health reasons, even if their decision-making is impaired.