Academics and researchers argue about what they refer to as "outcome" all the time. How should treatment outcome be defined? How do you know that the patient is "there"?
These are important questions because "good outcome" will need to be defined before we can answer questions like: what percentage of children will achieve a certain outcome? How long will it take? What factors can affect outcome? How can families influence the likelihood of a good outcome for their own child? What constitutes a bad outcome? How can we prevent the worst outcome of all (death)?
But for families who have a child currently in treatment these academic issues of defining outcome and it's accurate measurement are not real. They are anxiously watching their child everyday-- even every hour-- for signs of improvement. That is real.
I made hospital rounds on our patients this morning; so let me walk you through a typical case.
Roughly three weeks ago we admitted a very starved child (let's say, a twelve year old boy) to our inpatient service for bradycardia and wasting. We started our usual protocol and by the first week he had gained about 0.4 lbs/day, per the treatment plan. He was very wasted and needed a special mattress to prevent bed sores and skin breakdown, for he had no fat to cushion him. His vitals were still way off (heart rate too slow, orthostatic by pulse) but he had begun to speak a little, though he refused to ask questions of the doctors (too mad!). By the following week he was just re-fed enough to be angry and anxious about weight gain, despite the Zyprexa, and began to refuse further food. We discussed it with his parents and placed a nasogastric tube.
We were a little discouraged for a while, I have to tell you, for it was clear that our boy was tormented by eating disorder thoughts and anxieties, and they had overwhelmed whatever personality he had once had. He was hard to reach, hard to understand. And yes, even we, the "experts", can become discouraged. But we never give up. How could you give up on a child?
Over the next few weeks he gained further weight, and as he did so his brow began to clear, he made eye contact and began to speak to the doctors in a soft voice. Soon he gave us a rare smile. This past weekend it was my clinic partner, Dr Moshtael’s turn on call, so I had not seen our boy for a few days when I came in to make rounds. In that time he had been able to eat 100% of his meals and the tube had been removed. He laughed at our stupid jokes and was pleased to be moved up in phases so that he could walk and move about more. He attended group therapy in the Kartini Day Treatment Unit for the first time, to meet the cohort of children he would spend the next month or so with. He is a different kid. "I have my child back" his mother said.
That is what good outcome looks like. Just ask a parent. With patience and perserverance - and the right treatment approach - there will be more.
What does good treatment outcome for anorexia in children look like?
posted by Julie O'Toole on June 24, 2011 at 3:48pm10 Comments
on 06/30/11
Good treatment outcome can be measured in many different ways, and I do think it important that small milestones such as a smile are encouraging signs for parents and Doctors. I also agree that a person does not have to want to get well to get well, but I do think they have to want to stay well. Like most drugs eating disorders greatly affect a persons mind and can cause someone to do things they would not normally do if they were able to think clearly. Refusal and resistance to treatment is common but that does not mean someone cannot get better because they were forced into treatment. Sometimes by feeding a staved body that patient is able to regain cognitive ability and then has a desire to want to save their life. I know from my own experience I had no desire to want to get better, and it was because of that that I was not able to stay better. I went to a few different treatment centers over the years, including sometime at Kartini, but is was not until I had a horrible experience at a residential facility that I realized I was keeping my eating disorder was killing me and I could stand it anymore. At that point I actually did not return to treatment but instead used the tools from the treatment centers I had been to in order to help myself recover. (Including using Kartini’s printable meal plan as well as the DBT skills I had learned at another center.) I now that for myself I was able to go through the recovery motions, including gaining weight and even convincing psychiatrists and Doctors that I was recovered, but in my head all I wanted to do was get out of treatment so I could go back to my eating disorder again. I am not sure how many people experience something like this or if age plays a role at all but I do think that there does have to be a desire to get well in order for someone to put there eating disorder in their past. Getting treatment without the desire to get well does not mean someone won’t get well but I think that desire does help someone stay recovered in the future.
on 07/15/11
Thank you for sharing your story. As a mother it is encouraging to hear and informative. Thank you. Thank you.
on 01/18/12
I have just located this website today and am so pleased to find it. My 28 year old daughter has had anorexia since she was in her teens. She was a serious ballet dancer and says that is when it began. Then, when she was 16, her beloved older brother died in a bizarre accident while in college.
Although we didn’t know she had an eating disorder as she was a master at hiding it, she did finally tell us about it 1 1/2 yrs. ago when she decided to seek treatment. Since that time, she has been in treatment centers 6 times, some centers twice. Each time she drops her ED at the door, then picks it back up when she leaves.
I know that she is resistant to help even though she has checked herself in. The doctors and therapists are usually “stupid.” Food’s bad, yada yada. Then, after a short time, she decides to “buy into” the program, but it doesn’t last long once she gets out on her own.
She sees two professionals who are well-known in our area for expertise in ED’s and they have said that she will most likely need to go back into treatment very soon. I assume for re-feeding.
Each time she is re-fed in a clinic, it seems that they try to overload her with weight, I guess to have some to lose when she gets out. She is 5’4” and our family has a very small bone structure. She doesn’t need to be up to 110 as many have suggested. I have been reading Give Food a Chance and like what I have read about ordered eating and letting patients know that they will not become overweight.
I believe that the fear of being even the slightest bit overweight has been part of her resistance and lack of cooperation at the clinics. She believes that 105 should be her optimum weight. Sometimes she says that she wants to get well “a little bit”, but other times, she is content with the status quo. She is bright and beautiful. She had to give up her dream job with a major pharma company and has not worked in a year and a half.
While I realize that you cannot give me any suggestions re: a clinic, I hope that maybe some of the commenters will be able to recommend a clinic with similar protocal to that of the Kartini Clinic.
Will Katie be able to get better (remission) at this point in her life if she is resistant to it?
on 01/18/12
You ask a very good question and raise several painful points: “Will Katie be able to get better (remission) at this point in her life if she is resistant to it?” In other words, does a person have to buy into treament in order for it to “work”?
I have always been puzzled by this question/implication. It is certainly much easier to achieve good compliance with effective treatment if a patient “buys into it”—but it shouldn’t really affect outcome. Perhaps I am so puzzled by this kind of question because my training is in physical health not mental health. If you have diabetes, does insulin work if you don’t believe it will—or even want it to? Does penicillin? And sliding into the world of the brain (mental health) do drugs for the symptoms of schizophrenia work if the patient doesn’t believe they will or want them to? I think you will get nearly identical results, as long as the medication is actually taken.
The real problems are not her weight gain they are: 1. anosognosia 2. our culture’s belief that an adult gets to make decisions about their health and welfare, even when such decisions directly adversely affect their health and life, even when their brain is not working, though oddly and irrationally an exception is made for suicide (not allowed).
Anosognosia means your daughter’s brain will not let her see or realize the severity of her illness. This is not denial, it is blindness, brain blindness. That is her excuse—-but what is the treatment team’s excuse? They should know better than to treat a patient in a residential setting, send her out to poor follow-up with no safety net and expect a different outcome than you have gotten six times! If you are diabetic and you stop taking your insulin, your disease will reassert itself, and immediately.
What kind of professionals is she currently seeing and how often? Is her family/significant other included in this?
on 01/18/12
And by the way, I would not hesitate to give you a recommendation for a clinic. But it’s not another clinic/residential experience that she needs, it’s adequate follow-up and accountability.
on 01/18/12
Thanks so much, Dr. O’Toole for your prompt response. I have gone so far as writing to the Insurance Co. Board of Directors and the State Insurance Commissioner with my concerns that the insurance co says they have been re-fed, now send her out into the cold cruel world. There has never been adequate follow-up from the 4 residential centers.
I will admit that the ins. company has paid time and again for Katie’s treatment, but it has never been quite enough to get her over the hump. The last center she went to in ATL put her through res.. then they wanted her to do her outpatient in the housing facility with all the drug addicts. When she refused, the psych. told her that she was being judgmental. She ended up commuting from her apt. to the facility since I was staying in the apt. with her at the time.
We had major issues when she was in Denver 2x b/c it was not feasible for both her dad and me to fly out. We are doing all that we can financially for her…paying her rent and COBRA. Up until about 6 months ago, she wanted to do her treatment w/o family involvement. I finally said, “If I’m paying the bills, I’m going to get some information.” She currently sees a psychiatrist every other week and a psychologist once a week. Katie had been seeing the psychologist 2x a week, but they weren’t getting anywhere so she cut her back to once. Her dad and I were driving to Atlanta for family therapy 2x a month, but that cut off also b/c Katie wasn’t allowing us to go anywhere in the session. Katie was the “good little girl:” growing up so her anorexic voice has been rather difficult to witness. But we’re learning.
Please help me out with what you consider adequate follow-up and accountability. The outpatient facility in ATL has not been of benefit to her, and the one residential facility just wanted to re-feed her. The psychiatrist there told me that Katie had abandonment and trust issues re: her therapists (at some of the centers) and wanted to try to get to the bottom of it. But, she went on a vacation and wasn’t even there the last week of Katie’s stay!
Sorry for the length, but my story is a long one. Thanks again for your help.
on 01/19/12
“She currently sees a psychiatrist every other week and a psychologist once a week. Katie had been seeing the psychologist 2x a week, but they weren’t getting anywhere so she cut her back to once. ” This statement epitomizes what is wrong with much of the treatment out there. Grrrr.
Imagine if your MD thought that the dose of antibiotics was not taking care of the infection so she cut you back to taking it every third day. My message to these practitioners is “if it’s not working, please don’t keep doing it”.
Is it because they don’t want to lose the business? Is it because they don’t have anything better to offer? Is it because they deliver hopelessly outdated treatment in the first place and have no motivation to get up to speed?
Weight loss must not only be achieved, it must be maintained. And letting the patient determine what she should weight is, well, crazy. You need a doctor or therapist who actually cares about the outcome and who is seriously willing to go to bat for you, it’s the old “give a damn” factor at work. My experience with ERC in Denver is that they have been willing to work with me (better on the adolescent side and less so on the adult side, but they are learning and have leadership willing to work with the referring provider). But, of course, this requires me to be willing to correspond heavily with them prior to my patient’s admission. It’s time consuming. Whether it is ERC or another residential setting you use, your “leader” (my prejudice is that this should be a physician, but a caring experienced therapist ala Sarah Ravin would be excellent, too) will need to establish a clear goal weight and communicate this to the residential treatment team, along with the rationale for how it was obtained. In short, it will be that weight at which Katie can achieve ovulatory periods and which she can maintain when not engaged in eating disorder behaviors.
Then, PRIOR to Katie leaving for residential treatment, your leader will have to set in place outpatient follow-up weekly for weights and vitals (labs if purging was a feature of her illness) and consequences for non-follow through. You and Katie’s Dad will have to be a part of this at every step. Because of anosognosia she cannot do this “on her own”. Likely she will need such close follow-up for the first year after weight restoration—-and by close I mean weekly.
Then, once back in outpatient care, avoid therapists of any stripe who purport to help her find out “why” she has AN or to “uncover the meaning of her AN”. As it is so difficult to find appropriate therapists (not to mention psychiatrists!) who understand AN, it would be better to find someone who would agree to leave the ED alone and to focus on general psychosocial functioning with Katie. She will have scars from her long illness that hurt, and managing the fall-out from under-treated AN requires help, supportive psychological help.
Remember: set up the outpatient follow-up and the consequences for non-adherence to the plan BEFORE she leaves for any residential treatment.
on 01/19/12
Thank you, once again, for your forthright reply. Would you please recommend a clinic should it become necessary?
on 01/19/12
By “clinic” I assume you mean residential center? If so, I would try and work with ERC in Denver.
The people for your leader/provider to talk to in order to make an integrated plan are: Dr Ken Weiner or Dr Craig Johnson.
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on 06/26/11
Wow! That’s what I like to hear. None of that “they have to want to get better” nonsense! When in the vice grip of this insidious illness, sufferers are unable to fight it on their own. I’m glad there are places like the Kartini Clinic for this kind of excellent treatment.