"not considered visitors"

Charlotte has published a remarkable document at her blog that will get people thinking, talking, and I suspect: angry.

Some will be angry that she question it. Others that these policies exist.

No one who runs or has had a loved one in an eating disorder hospital or residential setting will be surprised at the carrot and stick behavioral policies, the limited visiting hours, the emphasis on patient "compliance," or the lack of distinction of policies and information between children and adults.

This is normal for ED hospital units and residential treatment. It's shocking, and I think it should be, for families new to the world of billable hours, behavioral treatment, the worship of target weights, and the endless cycle of inpatient-release-relapse-inpatient that our US "system" creates and thrives within.

I know why this stuff started, and I know the insurance issues that perpetuate it, and I know the clinicians are usually just doing their jobs in a system they did not design nor can they change. What I don't know is why more people aren't standing up and questioning the way we do business (and it is: big business). The fact is, more programs are moving away from these approaches and are moving to a whole-family, full-time, long-term approach that goes from hospital bed to home and all the way to remission. Why aren't more?

Perhaps the best way to point out the problems here is to compare it to something. Like oncology. Would we hospitalize patients and limit them from seeing their parents OR THEIR KIDS to 1.25 hours a day? Would we have them in group therapy all day? Expect them to learn enough about their mental illness to be able to go home after a few weeks and use that information on their own? Would we regard their ability to function as willful and withhold basic rights like bathing and family contact?

Would we treat children without their parents?

I think we need to start questioning whether these programs work. Not whether they put on weight temporarily - they do - but whether they improve outcome. Believe it or not, that's actually not known and some research indicates otherwise. It's certainly the most expensive way to treat patients, especially as they are expected to repeat it. We need to start asking whether hospitalization and residential care that is not followed by coordinated step-down care is like giving the first dose of an antibiotic without giving the rest. We need to start asking whether treatment that does not include the family full-time from the beginning is actually just the old parentectomy in a new form that has lasting effects on the entire family including siblings.

I'm struck by the tone of this hospital information packet for parents facing pediatric cancer. Note the lack of tiptoeing around the seriousness. Note the respect for the intelligence of the parents. There is no shying away from the distress that treatment will cause but also no pity. There's a fearlessness here, and a resolve for courage and action. I want that for families facing eating disorders.


  1. I want it, too! Great post.

  2. Thank you for the praise. I have to admit to not sleeping and spitting with anger for most of the night. By 5.15am, I was at my desk assembling data.

    I cannot believe that this type of "care" for eating disorder patients is practised, let alone widely. I am extremely distressed on behalf of the parents who sent me this and any other parents whose children are in a treatment facility that uses punishment, threats and coercion.

    I am horrified and ashamed on behalf of the patients, some of whom are very young children, at this, IN MY OPINION, barbaric and abusive treatment of sufferers from the most lethal psychiatric illness.

    However, I reserve my righteous anger and my "mega-troll" venom for the insurance companies and the providers for their pursuit of money over the mental health of our children.

    Just sayin..

  3. What I read in that letter from the pedis oncology team is one I could wish would come from my eating disorder team initially, when we so shocked at we were about face. Just substitute eating disorder for cancer. The eating disorder has tried to kill my girl too.

  4. It was like this in the 1970s and 1980s in the UK. If you had AN, you were made to feel like a rebellious brat who was being deliberately naughty.

    But when you are treated with threats, or experience punitive regimes, you drop out of treatment become 'non-compliant' - and you start to feel really bad about yourself... I know I started to think I must be a terrible person to be threatened and talked to in that way.

    It was so different over the last 6 years... The first time I went to see my psychiatrist I was shaking... I was absolutely terrified that I'd be locked up and punished. But it wasn't like that at all....

    To be treated as a valid human being, and both empathetically and sympathetically made a LOT of difference. It certainly kept me in treatment and enabled me to make HUGE steps in recovery from AN.

  5. In a workshop on emergency care for AN there was a group discussion on what to do with a patient who had collapsed and been sent to the ED - the choices were; send her home, admit her to a psychiatric ward, and admit her to a general ward. I was angry that some people chose option one and relieved, having had some experience of a general psych ward where absolutely NOTHING was known about AN that no one chose option 2 but was silently screaming to myself "Oncology - now THAT's where they know how to treat critically ill people". The eating disorder world could learn a lot from the Oncology world, but first of all the world in general has to learn that eating disorders are illnesses, just like cancer, deserving of sympathy and treatment not choices deserving of blame and punishment.

  6. I went to Sheppard Pratt. Yes, it really was that terrible.

  7. This is just all so disturbing, it is like the AN patient is treated as a second class citizen rather than someone who is truly ill and deserves all the care and compassion that you would give a child with cancer.
    I thank God every day that we had care providers who steered us to Children's of Colorado, where I hope our D can recover.

  8. I have been in an ED treatment program where visitors were ONLY allowed once a week on Sundays between 2 and 5.

  9. The most awesome Leslie10:51 PM, May 20, 2012

    Interesting thought Laura, but not certain that group cbt would be as effective with parents present. I certainly think that parents should have a role in helping their loved ones combat unhealthy thoughts, learn how to eat with them and learn nutrition.

    Perhaps your problem is just that you are "too" ahead of the times! I guess parents being present during the day could work, but there are many things that people might need privacy to express.

  10. Oh...er....me me me!!

    I am having a conversation with a patient on my blog about bed rest. Now, I was on enforced bed rest last summer in a....wait for it....oncology ward. The nursing staff were lovely, kind, patient and kept popping in and out because they knew I was the type of person who "didn't want to trouble them" and ring my bell.

    Due to being the only patient on the ward on a mega dose of steroids and not on morphine or some other strong pain killer, they knew I would be awake and "hopping" all night and that I was taking on serious amounts of fluid (IV and drinking 5 litres of water to counteract the hives...), that I would be needing to wee a lot. They sat and chatted with me for hours, handed me the tissues when the aftershock kicked in and made me endless cups of tea, plumped up my pillows, straightened my bottom sheet, shared their biscuits, laughed at my jokes - yes, I still make jokes even when on death's door.....

    However, I suspect this is not the treatment being metered out on an ed ward? Sigh. Is it because cancer is so visible, not only because of the actual scars and lumps, but because it is "common" when compared to eds? Why do people not get given the whole "lifestyle" argument when they get cancer after a lifetime of 50 fags and a bottle of whiskey a day? Why do people with cancer get treated with dignity, respect and kindness, whilst those on an ed ward get coerced and punished? Sigh....

    I have to say again (and again and again), that ed treatment can learn so much from cancer treatment.


    1. Great post. My (9) year old D after being medically stabilized after losing 30 pounds, was placed in a children's psyhiatric ward for ages 9 -17 at a prominent children's hospital. I could not sleep over night with her, as I had on the medical floor. She was the youngest patient there, and suffered a deep trauma of childhood. I made it my business to be on unit with her to eat every day. I was the only mother there. She was in groups with 17 yr olds. And I will share a poem she wrote

      "Mommy oh mommy I miss you so much.
      Mommy, with a face so beautiful no need of blush.
      Mommy, who has a love and care for a girl like me"

      She came home we did modified maudsley with clinical support and she has done remarkably well despite this harrowing parentectomy and beginning to her diagnosis and treatment.

  11. Guys, it was like this in the early 2000s! An f-ing nurse purposely injected a massive syringe full of air into my feeding tube after flushing it because he thought it was funny to see me writhe in pain from gas. Because the ridiculous amount of pain and bloating one gets from eating everything they prescribe just isn't enough.

    When I told my doctors about this they said it was the "anorexia talking" and did nothing about it. Doctors and nurses can get away with this $&!@ because they KNOW no one will believe the "lying, manipulative anorexic".

    If you do everything they ask and gain weight you're accused of manipulating the results, verbally abused and punished. If you do everything they ask but don't gain weight simply because your body has got used to a particular caloric threshold, you're accused of being "non-compliant", verbally abused and punished. You can't win.

  12. Anonymous

    This is abusive treatment and it makes me cry. I hate it but I am glad that you feel you can share it here and that you are not being judged in any way. Communications I have had from other sufferers are based in the assumption that I will just hear "the anorexia talking". I don't.

    The sort of situation you are describing is not uncommon - I am beginning to find that out. It is not confined to one hospital in the US. It is a worldwide problem.

    Some protocols have to be carried out to save lives and they are painful BUT they should not be accompanied by degradation, abuse but with kindness and compassion.

    Staff should learn the difference between the anorexia and the patient, just as we parents do. They should also not be assigning blame to a patient for their illness or making assumptions that all eating disorder patients are the same.

    We have to somehow change the perception of not eating from being a willful act, extreme self-control, etc etc etc to being an inability to eat, a compulsion that prevents patients from eating, a biologically based, treatable brain disorder.

    My heart goes out to you. xx


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