Tuesday, January 01, 2008

Please read this first-hand account

sent to me by a mom, describing her daughter's recent experiences in an upscale residential facility for eating disorders:

". . . If my daughter cries in the facility, she is restrained in a punishment chair. If a girl regurgitates food at the table, she has to eat it again. The nurses tell my daughter to try to swallow her vomit at the table so she won't get the punishment chair. Over the past four days, my daughter's typical meal has consisted of two veggie burgers on buttered rolls, three cups (!!!) of canned vegetables, two cups of milk, two bananas, six TBS of peanut butter, and a granola bar, all of which must be consumed within 20 minutes. All food is served stone cold because the pediatric unit has no kitchen. We are allowed one visit per day, during which she cries to come home. . . ."

This is why I'm such a strong believer in family-based treatment (the Maudsley approach). Those of us who have been through the nightmare of anorexia know that you have to be tougher than the eating disorder to help your child survive. You have to allow no loopholes for the disease to continue its insidious mind-twisting.

But you do not have to punish the child. Someone with anorexia is already suffering torments beyond what we can truly imagine. The very concept of a punishment chair makes me feel ill. Eating stone-cold food? Being punished for crying? Who wouldn't cry, trapped in the hell of anorexia? Serving massive amounts of fruits and vegetables during re-feeding? You need the smallest volume possible of food during re-feeding, partly because the digestive system can't handle so much volume and partly because fat is a crucial part of the recovery process. Quality, not just quantity, is important, and the brain and body need fats and protein to begin to heal.

Imagine being ill with cancer and being punished for throwing up after each round of chemotherapy.

Treatment for an eating disorder should never look like medieval torture. There are other ways and options. Even in cases where a child requires an NG tube, treatment can be done with love and kindness and not punitively.


tori_927 said...

I'm speechless -- This is so shocking and absolutely horrendous. I can't believe this is actually happening somewhere!

Dreaming again said...

That sounds like something out of a 1940's mental hospital torture center!

My first instinct, both as a patient and as a mother is 2 things ... oh no! OH H*** NO!

My second instinct is to step back and say ...is this perspective or truth? The mother needs to get herself into that treatment center and observe what's going on. If they are feeding her like that, IT'S NOT EVEN HEALTHY REFEEDING!!!

They're going to wind up with pretty significant refeeding syndrome and some cardiac issues.

And to force them to eat it in 20 minutes ...ok ..are they trying to TEACH BINGE EATING DISORDER?

shutting up now

mary said...

I would hope that any parent who knows of such a thing is able to stand up to such practices. It shows such a lack of respect for the human spirit. Sadly we see this in many nursing homes for the elderly as well, though I'd hope not being forced to eat their own regurgitated food. Families who physically unable to care for their own often don't know how to stop the abuse. One way is to for the families to contact a state representative as they are better prepared to bring in an ombudsman for the family and see to it that such places are watched or shut down. The place in question sounds like they lack professionalism to be running an ED facility.
One particular place, for treating ED's, always seemed to find a way to blame the family for the ED and did a splendid job of separating families from their children.

I do believe it was fear of such places that motivated my daughter to recover on her own.
There should be more watchdog groups holding treatment centers, whether free or million dollar ones, accountable for quality treatment. I guess this may vary depending on ones view but there must be a middle ground like the one called patient rights, which we can all agree on.

Anonymous said...

That's horrific. I'd vomit if I had to eat cold canned vegetables - and I'm not a teenaged anorexic girl.

Anonymous said...

This is absolutely horrendous! I really have trouble believing a facility can use such a shocking strategy as eating one's vomit?? Is this really happening?

And someone needs to let that parent know, or back her up, Harriet on talking to the power's that be in that facility that this is just draconian and should stop immediately if they are using such a strategy.

As parent's we need to voice our concerns when things like this are happening, and like both Dreaming and Mary pointed out, either the mom- better if both parents head in there together- and observe exactly what is taking place to follow up on this, and make sure they are getting the full picture vs a very upset (understandably) child whose ED may be pushing some buttons (and I'm not saying that's the case, but this sounds very concerning, and can't just be overlooked). The Dr's/therapists in charge of her child's care also need to be alerted immediately to what's taking place.

Many times there are untrained staff, and just random mixed-bag nurses who have little or no experience and/or training with ED's, and there can be such inconsistency in many of these programs that, as a parent, you just can't assume they are going to do the best for your child- which is clear in this senario.

Places such as these need to be held accountable and I would like more of specific rating (not the glossy brochures, and lucrative ads) of such facilities and residential treatment centers be mandated and professionally overseen regularly. I love Mary's idea of the "watchdog" group to make sure there is clear objectivity and balance here as well.

They need to know that parents of ED children are not going to take sending off their children, not to mention the countless thousands of dollars IP/residential care costs, lightly. And are going to hold centers accountable for any negligence, abuse, punitive and/or inhumane treatment.

Harriet, I hope you can help this mother and give her the strength to demand some accountability and explanation in this situation- immediately.

Not a great story for the New Year-but let's keep the fight going for improved treatment and care, and rally around these families to get what they deserve!

Let Peace & Love prevail-

Anonymous said...

Hold the phone, at an ED clinic they want their clients to eat all that food in one meal?? That's insane!!! No one can eat that much in one meal, I mean, not unless they're an athelete, and even then I think they'd be hard pressed...

I've never had an ED but c'mon , that's just nuts, surely anyone can see that??

Anonymous said...

wow. this is just one huge example of the absolute insanity often seen in healthcare institutions. thank you for blogging about this and bringing it to light - further proof that more awareness and activism is needed for treatment methods for eating disorders. i hope this mother and her daughter are able to get accountability for the facility - and that the girl is able to get better treatment somewhere else.

Anonymous said...

I'd love to know which facility this is, because it needs to be put out of business. I've been treated inpatient at three different facilities, and definitely experienced NOTHING of the sort. We were encouraged to learn to cry again, as many of us used our EDs to avoid feeling any negative emotions. In two of the facilities, the consequence for not eating was being forced to make up the calories in the form of a supplement at the end of the day. In the third facility, I simply wasn't allowed to leave the table until I'd completed my meals. In all cases, I was given a calorie level or exchange plan by a nutritionist, but I was allowed to choose my own menus from within that plan. I did have an abnormally huge amount of food to eat in some cases, due to having a high metabolism and plateauing at an unreasonably low weight, but I had the option of eating or receiving tube feedings at night. The tube terrified me, so I chose to eat, as uncomfortable as it was. I genuinely believe this family-based approach would NOT have worked for me, but dysfunction in my family was a substantial contributing cause to my ED in the first place.

Anonymous said...

This is absolutely awful -- Harriet; Does this facility actually exist, or could it be the ED thoughts of an underweight hysterical child. . .

If this facility does exist, I think it alludes to the dangerous line that exists between "no loopholes" and punishing the child.

Food needs to be appealing and appropriate when refeeding. Most IP facilities attempt to teach NORMAL eating, even whilst refeeding a child. Larger portions or supplements to help get in extra calories, but the snacks/meals should still have some resemblance to outside norms.

I had an NG tube at 15. But it was put in with the utmost care and by my/my parents consent (though true, I would have had one regardless of whether I wanted it or not) -- it was clear that it was a temporary measure to make the eating easier, as opposed to a punishment for refusing food.

I find it hard to believe anyone in a health profession could do this to a child.


Harriet said...

I agree, this sounds more like One Flew Over the Cuckoo's Nest than something that could be happening now, in real life.

I haven't witnessed these things firsthand, so I can't say with absolute certainty that it's all true. As far as I know, this is really happening at a well-respected facility in the NYC area.

And I will say that when my daughter was in the hospital--not an eating disorders clinic or treatment center but the regular peds ward--I was shocked at the food the dietitian sent up. About the only laugh we had that week was taking the lid off a plate that turned out to contain a veritable mountain of steamed broccoli. Even then, as new as we were to the whole situation, I knew this was idiotic. I actually took the plate back down to the kitchen and stuck it under the dietitian's nose to ask her what she'd been thinking. She admitted she hadn't really been thinking.

I can believe unfortunately that this is true because I've seen some of this attitude personally in other places. The DSM-IV definition of anorexia as a refusal to eat kind of says it all for me. It should say "an inability to eat." The word refusal connotes wilfullness and oppositionality rather than illness. And that is still the attitude among many mental health professionals. It's only a short step from that to punishment for that very refusal.

anonymous, you probably know that I don't believe families cause EDs any more than the fashion industry does. This is not to say that your family wasn't pathological; I believe you and am sure your feelings are based in reality. But I have seen family-based therapy work for a wide variety of families, from the fabulously healthy to the marginal. The strength of the method is in the concept of family--they don't have to be perfect or anywhere close. Thank God, because our family is nowhere near perfect. :-)

Many treatment centers insist on some kind of time limit for meals. I understand that there are practical concerns but I hate that. I hate being rushed when I eat myself--how does that possibly help someone in recovery from anorexia?

Anonymous said...

The DSM-IV definition of anorexia as a refusal to eat kind of says it all for me. It should say "an inability to eat."

That's literally what the word "anorexia" (without the "nervosa" part) means in medical terms -- loss of appetite or inability to eat. In the medical reports I type and edit, it's used in situations where someone is unable to eat due to a certain medical condition or regimen. But yeah, "refusal" would seem to connote that it's a conscious refusal, which it certainly is not.

P.S. Is it even legal for a licensed treatment facility staffed by medical personnel to force someone to eat his/her own vomit? I would tend to doubt it. Besides the fact that the re-feeding regimen sounds wildly inappropriate and just plain disgusting, if that is actually happening those people need to be reported.

Anonymous said...

does family-based therapy work when one of the parents is physically, sexually, and mentally abusive towards the anorexic patient? i had an abusive father, a mother who was remaining in the marriage "for the kids" and a little sister. both my mom and sister were being abused in various ways as well, and my sister and i witnessed my father trying to kill my mother. i was 15 then, just a few months before i finally became ill.

by the time my family would have managed to resolve enough of their other issues to focus on me, i'd have been dead. by 19, I was 5'4" and 60 lbs...i nearly died anyway, and i simply wasn't stable enough to NOT be in a medical hospital at that point.

i can see how family-based treatment may work in a family that has the capacity to support the patient, perfect or not, but when most of the family is struggling to stay safe from abuse, there simply isn't enough to go around

(this is the same anonymous as before)

Fiona Marcella said...

I would be with the anonymous posters in being a bit cautious about condemning all hospital and residential facilities on the basis of this report. It does sound truly appalling. On the other hand the girl who is being treated there is suffering from AN and AN lies, and cheats, and screams, and manipulates. Just maybe the parents are hearing AN's account of the staff and treatment rather than their daughter's. Of course, unless the facility is open to the concerns of the parents and willing to let them in on the treatment plan they'll never find out and so yes, they definitely should ensure that they are fully informed and happy with the regime or pull their child out and try somewhere else (which may include home re-feeding which is possible for many but not all). Having desperately tried Maudsley and failed I am concerned that sufferers and parents do continue to have the option of hospital/residential treatment at the same time as more support is given to allow all who can to re-feed at home.

mary said...

I agree Marcella, that we have to be wary of what someone who's mentally distressed might say or do to get out of a place. On the other hand I have seen first hand abuses of "fine" places that knew it was the sick patients word against theirs and banked on the fact that no one will listen to them.
One place, not specifically an ED place, used gurneys with straps to keep down patients who were non compliant. Somehow I was able to get past the usual lock outs to see my "bad" 10yr. old foster child friend and witnessed her and another child laying in an adjoining room strapped to a mattress on the floor. The ceilings seemed to be 20ft. high. Her behavior was being punished because she wanted to stay out and play rather than come back into the dreary building after a break.I imagine that she was being a brat. The way they handled it, IMO, left loads of room to traumatize her/others and also teach her, should she grow up and care for her own children, that it's ok to tie children down.
Because I was behind 2 sets of locked doors (very intimidating) I wimped out and used the time to calm my friend down with a meditation type story that took her away from where she was so she'd get unhooked quickly. I knew I was being watched and listened to so I hoped they'd get that what they did was not working as well as using a calm voice, even allowing someone to be disappointed if they need to be. They allowed her to come out soon and we went down to her room to hang out. I couldn't tell her that what they did was wrong. I could tell she already thought it was normal. This is what I found most disturbing. Isn't it a good thing for a child to want to stay outside and play? Even the most out of hand child can be restrained quickly and then given a safe place to calm down.There is probably a place for those straps but this was clearly sloppy work.
Anyway, after my visit the proper folks were notified and the practice was supposed to stop. I live in one of the better states for patients rights which makes what goes on behind closed doors even more appalling.
So, we do need to listen well. It could just as easily be us accused of ruining their life and sometimes it's true and at other times it's just one more step further down the rabbit hole. I believe this is why we really need to find a way to work together. No more divided teams for treatment unless it's warranted! The ED fighting back is to be expected.They will exaggerate and lie if it gets us to listen and feel guilty. Still, sometimes they are right and the well paid treatment center is not thinking of the whole picture. I've heard of other places that don't push anything, eat or don't eat, just write the check.
We do need to keep people safe from themselves at times. Sadly, I feel that much of what we not tolerate as normal needs to be changed in our caring institutions. Too much abuse happens in the name protecting the patient from themselves or others. They have a difficult job when done right and some places are exceptional but at best probably lack the love that helps heal. This makes it all the more important that home and the treatment center work together. We can love our children where ever they are and at times sending them away is the most loving thing a parent can do. When it works well it can work very well. Maybe I ought to rethink my views on cloning.: ) I have much admiration for many care givers.

Katy said...

After reading this post, I thought this NY Times article was eerily apropos.


It's titled "When Hospitals Kept Children from Parents" and the "draconian" regulations it addresses might sound quite familiar to parents of ED sufferers...

Harriet said...

I too am glad there are in-patient and hospital settings. Sometimes they are necessary to save a life. One thing I have learned, and try to teach others, about eating disorders: It doesn't matter *how* or *where* re-feeding occurs, as long as it happens. It's like birth--maybe you have an idealized vision of a home birth with a midwife but end up in the hospital. That's OK, because the point isn't the process--it's the results. In both cases, a healthy child.

That said, I think much of the quality of care in in-patient settings is horrific, either because it's ineffective or draconian or both. Eating disorders are not choices and they don't require punishment.

Mary, what an appalling story. Thank goodness you were there with your calming voice to model another way.

Katy, thanks for the link. I saw that too and thought it appropriate.

Anonymous said...

This makes me so sad and angry for those going through this situation. After reading this, I'm almost grateful I didn't enter treatment when I sought it in the worst days of my eating disorder; who knows what it would have done to me if I would have had to deal with this sort of situation in the state I was in.

Harriet said...

Well, I'm sure most places are not like this. I'd hate to think of someone not getting treatment when they needed it.

I just think families need to be more informed and aware of what's truly going on in treatment facilities--not just because of the possibility of abuse, but also because so much e.d. treatment is ineffectual and a waste of time and money.

Anonymous said...

Just playing devil's advocate. . .

But what kind of ED treatment do you consider ineffectual?

A :)

Harriet said...

Um, most of it, if by "effective" we mean "leads to recovery."

Too much treatment emphasizes talk therapy when patients are malnourished and can't possibly benefit from it. Too much treatment insists that patients must "choose" recovery. Too much treatment allows the malnourished state to persist for years and years. Too much treatment is not evidence-based at all. There is no evidence, for instance, to suggest that equine therapy (whatever that is) can help someone with an eating disorder recover. Or art therapy. Or talk therapy. These things may all be pleasurable activities but they don't lead to recovery.

Too much treatment is invested in the blame game.

And some treatment is truly punitive and even abusive.

Maybe we have to begin to think like consumers and insist on treatment methodologies that are proven and not just someone's notion of what might help, however well-intentioned.

Anonymous said...

I work at a hospital, and though I am fat and have never had an eating disorder, I have always been disturbed by the tone of impatience used by hospital staff to describe the inpatients of the EDs unit. I can't help but wonder why it is so difficult for people to have compassion and sympathy for people battling a very real disease.

It appears to come from some misplaced belief in 'choice,' the same way that fat people are punished socially because others somehow believe it's their 'choice' to be/remain fat.

I don't think any person would ever 'choose,' in our society, to be fat, or to have an eating disorder. There needs to be more compassion, all around, and less blaming the victim.

Anonymous said...

Wow, I just read the comment regarding your daughter receiving a plate of steamed broccoli for her meal at the hospital. I previously worked in food service (now in clinical nutrition), and my mom (a nurse) told me a story from many years back, about a dying woman in the hospital presented with nothing but green beans for breakfast, lunch, and dinner.

Hospitals truly place so little importance on food service that, in cases like these, it seems almost astonishingly sadistic. Many dietitians don't have any clue what kind of actual food is served to their patients, even though they are the ones who've ordered the diet.

At any rate, I wrote a poem about those green beans because it gave me the willies.

Sorry for the random ramblings on your comment thread :)

Harriet said...

Cool. Thanks, peggynature.

Anonymous said...

Harriet, you do a very important service here, but I have to ask: are you going to apologize to 'anonymous' or are you going to continue to pretend that she didn't respond, aside from a vague 'well I'm glad hospitals exist'? Just because the family situation in your case and in many cases didn't trigger the eating disorder doesn't mean you can brush aside others' experiences. When she said 'this was the case for me' you minimized her pain ('oh, all families can help'), forcing her to be more explicit in her explanation than perhaps she wanted to. It must be hard to imagine such a terrible family life when you are so bent on exonerating parents from blame (and mostly you're right), but such experiences are real and they can cause traumas that include disordered eating, and to just ignore that because it doesn't fit into your crusade is very disturbing. Please be a little less rigid in your path.

Harriet said...

I'm a little confused by your tone, anonymous. I don't think I've brushed the earlier anonymous aside, or minimized or downplayed her pain, and I've never said that every single family can always help. This post and these comments was about a particular hospital experience.

Of course the family situation she described is terrible, awful, nightmarish. I would never try to minimize her pain; first anonymous, I hope you know that. I grew up in a dysfunctional family myself and am all too familiar with the kinds of damage families can inflict.

But eating disorders are not among them. Eating disorders are biological illnesses. This is fact, not my opinion. Look at Walt Kaye's research, or Cynthia Bulik's--they're all about genetics and neurobiology, not family dynamics. The head of NIMH is on record describing eating disorders as biological illnesses. Families don't cause e.d.s any more than they cause schizophrenia or autism.

I'm an advocate for family-based treatment for eating disorders; my advocacy is in no way a criticism or denial of anyone's pain.

I guess I don't see that as being rigid. You of course are welcome to disagree.

Anonymous said...

Sadly, this girl's story is probably not an exaggeration. I too have been a prisoner of ED treatment facilities, and yes, crying, regurgitating, and giving a hug to another patient are all on the list of things a patient wilol be punished for. This january i am beginning a psycology major, and my sovereign goal in this field in to raise more awareness of this "unconventional" FBT, and one day i hope to see it as the first treatment option discussed with a family whos child is suffering with an ED, so that less sufferers will need ever set foot in dreadfull institutions like these.

I am appalled