Not in a boat, not with a goat

I have a question on compliance.

Can I get some examples of whether an anorexia patient you know continued to refuse to eat according to plan when hospitalized or in residential care.

What I hear is on eating disorder units there is no choice, and resistance is short-lived. 

But a friend in the UK tells me that even on specialist units patients can and do successfully resist and go on losing weight.

Could use the benefit of examples in different care environments. I'm wondering if my impression is wrong, or there is a difference between different countries.


  1. This is a perfect example of why parents must be involved and totally on board. On our Kartini inpatient service we get as good as no food refusal, but when we do here is the routine:

    1.Calmly and neutrally (but firmly) explain to the patient that not eating is not an option, but that if they find they just can't, we will place a tiny, soft feeding tube to deliver them what they need until they feel they can.

    2. Parents must be 100% on board with this, if not, it won't work. Parents must vocally, calmly and lovingly explain that they support what the doctor must do.

    3. Zyprexa is life-saving for those cases where their ED anxiety is so overwhelming they cannot allow themselves to eat. We start it at 2.5 mg and titrate up, usually no higher than 7.5mg/day. Patients with this degree of AN are TORTURED. Medication is given to relieve suffering. Again, never done without parents' sign-off and understanding.

    4. Advancement in privileges is dependent on cooperating with eating. On our unit we have made it impossible to exercise secretly or purge in a bathroom---this is a safety issue.

    In short, two things must be in place to ensure that no one leaves our care inadequately weight restored or eating well enough to be so: PARENTS and doctors must be 100% in coalition against the disease and DOCTORS must be 100% of the conviction that not gaining weight is not acceptable and represents THEIR failure.

  2. In the documentary, "Dana the 8 year old anorexic part 1" (on youtube)her parents and siblings talk about how she refused to eat for weeks in a pediatric ward. The hospital sent her home because she refused to eat.

  3. All 6 times I have been in residential, no one could refuse to eat. If you didn't eat, you had to take a supplement (ensure, boost). If you refused the supplement you had to go to the hospital for tube-feeding. I have been to 4 different treatment centers, and it was pretty much the same at all of them. No one ever refused to eat. The environment was such that people encouraged you to get better, including other patients.

  4. At the hospital based treatment program I have been to numerous times, not eating was of course discouraged. Privileges were based on completing meals and not engaging in compensatory behaviors. However, refusal to eat was technically allowed.

    If the patient was not severely underweight and refused to eat (such as in the case of BN or ED-NOS with anorexic features or moderately underweight AN) the patient would be discharged from the program for failure to comply.

    If the patient was severely underweight and refused to eat, the patient would receive a feeding tube. Refusal to receive the tube or attempts to pull the tube out would result in discharge to an involuntary psychiatric unit (either adult or pediatric psych depending on the age of the patient) as the program was a voluntary unit only and therefore could not treat the patient against their will nor offer the round the clock 1 on 1 monitoring. What is a shame is that the patients would be sent to facilities that did not treat eating disorders and so the specialized care and knowledge of nutritional needs would not be available.

    Refusal to eat or to complete adequately was allowed to go on for variable amounts of time before further action would be taken (tube/discharge/transfer). It was not uncommon for resistance to go on for several days up to a week without action.

  5. my experience has been the same as maya's. there were people who successfully hid food, but it was found out pretty quickly and measure's were taken to make sure that didn't happen again... and, if it somehow DID happen repeatedly, those patient's were sent to the hospital for tube feeding and the residential place said "this place isn't safe enough for you. we're not doing a good enough job for you. we need to send you somewhere that does have the ability to keep you better protected (tube)" ---now, i don't know what happens if people refuse the tube or pull out the tube or otherwise manipulate it. i've never heard of that happening for more than a day.

  6. This is VERY helpful!

    I'd really like to know what countries the clinics are in that you are each describing. Also, if private or public.

  7. A residential facility I visited (UK) recently did not insist on prompt weight gain as a necessary part of treatment and would work at the pace of the individual in feeding as in other behaviours. They saw this as a virtue and contrasted it with the (percieved) attitude of other treatment facilities who discharged people for non-compliance.

    I have not heard of another facility for children where not eating was allowed, but I do know that unless they are "sectioned" patients at adult facilities cannot be made to comply and are often asked to leave if they cannot.

  8. I had drawn to my attention recently the case of an older an patient who spent 6 months on a psychiatric ward at one of our more famous hospitals for treatment for anorexia. Total weight gain at the end - 1kg. Cost £77,000.

  9. I am the 2nd Anonymous.... I am referring to treatment centers in the US. To add on, one treatment center I went to and had a lot of luck with (will include here that my parents like this place too as they felt included but nowhere on the website did they describe themselves as "evidence based" - just saying that those words on a website are not the only indicator that a place is good and works)... okay, so the good treatment center I went to also did not insist on immediate weight gain. They usually let people maintain for a week. We also had a 2 day period when you first arrived where you didn't have to eat all of your food. In theory, you could show up at the table and not eat a morsel of food 6x a day for 2 days and there would have been no consequences. Then again, they took our vitals 6 times a day too - so I'm sure they would have done something if vitals were crashing. Also, as weight gain went on, they occasionally let people "pause" and "get used to" the new higher weight for a couple of weeks before preceeding. This didn't happen often, and it didn't happen at emaciated weights... but it did happen sometimes. I should also include that this treatment center only worked with people above age 18. i think this "meeting the client where they're at" thing with weight happened because as the client came to believe that the staff were totally trustworthy and cared for them, the client became more willing to take risks with food, etc. But let me emphasize that this didn't happen all the time (the pausing to "get used" to weight) - just sometimes. But the 2 day period where you didn't have to eat was universal UNLESS the patient's parents or doctor or someone else requested for that 2 day period to be eliminated. For me, my therapist requested for the 2 day period to be eliminated and the program complied... so I had no 2 day grace period.

  10. I think that adolescent units in the UK (they are usually called units rather than treatment centres) broadly fall into 3 categories - a) specific adolescent eating disorder units. This was one of the first and is probably the most famous. The facility gives parents and commissioners (those paying, usually the local health service) alike clear expectations of weight gain and does have the facility for tube feeding. Other specialist units may be run on slightly different lines but most of them WOULD first and foremost ensure compliance in eating. Where they might have difficulties (and here my experience is anecdotal and NOT with this specific unit) is with co-morbid conditions. Children with severe behavioural problems, self-injury, diagnosable mood disorders, sometimes struggle with this kind of environment and are placed elsewhere (general adolescent psychiatric units or very rare specialist units catering for both eating disorders and self-harm)
    b) General adolescent psychiatric units. These units will only have a few patients with anorexia at a time and will also have other patients with other psychiatric illnesses. Here, as I understand (and again my evidence is anecdotal) there is less emphasis on re-feeding and more on the other co morbid conditions, depression, self-harm etc. It would be perfectly possible in such a unit for the staff not to see weight restoration as a first priority, although patients would be encouraged to, and hopefully helped to eat. In a bad unit like this, or just in one that was a bad match for the individual, the patient could indeed be "allowed" not to eat, but in a good match the patient would be encouraged and other issues addressed alongside the eating.
    c) private units which are run more on the lines of adult units. These vary considerably. Some will have the facility to tube feed, others will not. Some will keep patients who do not comply continuing to encourage and support them, others will discharge the non-compliant

  11. It seems like US programs are more lenient than Canadian programs. . .

    My pediatric experience was much different than my adult experience -- I liked my experience in adult treatment better and the pediatric system may have changed since my hospitalization in 2005, so I will explain my adult experience here. .

    The target for weight gain was set at 1-2kg/week. Note: Patients needed to be medically stable to be in the program as this program was not located on a medical unit. Patients with lower BMI's or unstable vitals would require a period of hospitalization on a medical floor before admission to the program (but this happened rarely.)

    All patients were started on a base diet of 1500calories/day (unless otherwise indicated) and increased by 300cal/week until they reached their maintenance diet. Maintenance was calculated by a dietitian based on age, height, a BMI of 22 and an AN factor that accounted for the extra energy these patients needed (if ED-NOS, or BN calculation did not include the factor). This usually was about 1800-2400 cals/day and a max of 4000 that could be prescribed.

    Some patients DID gain maintenance and CONTINUED to gain on this for the entire program period. I know patients who consistently gained 1kg/week once reaching their maintenance intake.

    For other patients, calories continued to be increased by 300cal/week until weight gain of 1kg/week was achieved. When weight gain plateaued, another 300cal increased was added and this was done until a BMI of 20 was achieved.

    After reaching BMI of 20, intake was kept the same for one week (ie. weight gain intake) and then decreased by 200-300cal/week until reaching maintenance once again. This often continued into the follow-up period because patients only stayed in the program for 2-3 weeks after reaching target.

    As for the eating, I was VERY surprised. Emaciated inpatients and day patients alike were expected to eat solid food within the required time limit from day 1. Any food that was not eaten was replaced by Boost.

    This was a voluntary adult program and therefore refusal to eat or too many replacements resulted in confrontation with the team and eventually dismissal from the program. The patient could be returned to the wait list.

    In Ontario it seems that NG tube feeding is saved for very severe cases and involuntary commitment really isn't done until things are very dire (re. BMI 11).

    I have to say that in a group of adults there is a lot of peer pressure TO eat. It is not like the pediatric system and patients are usually almost better at enforcing rules than the staff. Everyone becomes stressed if individuals break rules and therefore there can be a lot of hostility to someone who does not conform.

    Food challenges and requirements were stepped up as the weeks went on.


  12. I'm interested in your experience of adult services A:) as this is the exact model our local service wants to use in its new day patient service. I am glad that you found it helpful and can see that the positive peer involvement could be a very helpful factor. I can also see that it would not work for many adolescents. Did you get any help "transitioning" from adolescent to adult services and if not what help do you think would have been beneficial?

  13. I am anonymous #3. Sorry, I should have posted my comment with a screen name as I have done now. The program I was referring to is in the US. It is a public hospital with a specialized eating disorder unit - one of only 2 in my state.

  14. Oops, I just looked again and I was anonymous #2, not #3. My comment was posted at 11:28 AM, January 27, 2011.

  15. Marcella,

    There was no help transitioning. Usually if one is still sufficiently eating disordered the pediatric care team will make a referral to adult services but that is about it.

    I think the issue is that it is hard to know when to refer and when not to. My parents had to push for a referral because the team (at a BMI of 18-18.5) thought I was stable and didn't need a referral. I WAS stable, but only because dropping below this would have meant an admission to the hospital and up to a BMI of 21 which I was terrified of -- so I toed the line to stay out. I was alternatively restricting after appointments and bingeing/water loading before appointments -- it was a mess. . .

    Needless to say I was shocked by the adult system. There is a LOT of emphasis of voluntary choice. When an adult chose to come to the program they were assumed to have a certain amount of readiness to change.

    As I said, the expectations would much higher than in a pediatric program. In the pediatric program I was started on 500 calories and I could supplement whatever I wanted with Ensure. There was NO trust in terms of food choices, etc.

    In the adult program (as I already said) 1500calories/day -- but these were FULL calories and patients were expected to put butter on starches AND vegetables, etc. At the same time rules were less (ie. We didn't tip our milk cartons to ensure that the last drop was gone.) But our trays were checked and we did eat supervised at a similar staff:patient ratio as the pediatric system.

    I think my one complaint for this system is that I have no idea how it would work for more chronic anorexics/ED patients who were NOT prepared to eat a minimal intake consisting of all their fear foods (butter, cheese, etc.) and THEN deal with the increase to a maintenance level following week 1.

    I think it is especially difficult because IP beds are reserved for those under a BMI of 16. So you could have someone who is very psychologically ill and incapable of eating a full mp + going home at night, but they are still expected to take on the responsibility of being a day patient. I think it has to work this way, because there are very few inpatient beds and certainly not enough to cater to those who are not PHYSICALLY compromised.

    Surprisingly, most anorexics WILL eat in this environment because they badly want to stay in the program -- but for those who are used to NG tube feedings or getting away with supplements, I can imagine these people don't "survive" long in one of these programs.

    As this is the only type of program public adult program (at least in Ontario where I live), I don't see where these patients end up. I suspect that they get sick enough to be admitted to medical floors for rehydration/refeeding and then discharge or referral to a similar ED program. . . But there is no specific program that caters to ill patients who may need to start on a combination of supplements and one meal and build up to a normal intake, etc. . .

    At the same time, these programs are VOLUNTARY. There MUST be group standards and norms because it is incredibly triggering to see someone drinking Boost Plus while one is struggling through pasta with alfredo sauce or pizza. The basis of the program is that all patients are treated equal. This can be both an advantage and disadvantage, but things tend to get awful pretty quickly when patients are NOT treated as equals.


  16. i'm from the US...

    I was in one private residential treatment program, where they couldn't 'make' you eat..but if you didn't eat you got boot or ensure. yes you could refuse, but most people didn't do that. if you didn't eat/needed boost most of the time, the group would often bring it up in community meetings, and you would get backlash from everyone else. plus, no eating meant no passes which usually was enough to get someone eating....

    I've also been in a hospital- a public hospital that had an eating disorder protocol on it's pediatric floor- if you didn't eat there, you'd get ensure, and if you didn't do that, you'd get a tube. also, privileges were based on intake.

  17. yeah, um, actually I was anon # 4 (I had just stated I was anon # 2). But, point is. the facility was residential, for adults, in the US, and private

  18. when i was in residential, there was one woman who had had an ed for over 20 years who ate but always with a huge fuss and then eventually started refusing to eat all of her mealplan and lost weight in treatment. it happens. not a lot. but it does.

  19. Thank you very much indeed A:) That is very interesting.

    I still worry that this sudden leap from adolescent services where inability to follow the program is expected, to adult services where cooperation is vital, will leave a lot of 18-25 year olds (and their families) in limbo while the patient matures enough to be able to cope with such a program and that this could mean missing out on a vital time of brain development and being sick for much longer than necessary. Obviously though some young adults do adapt well to being treated as such. I am glad that you have benefitted from this yourself.

  20. I think there is a huge difference between the adult and adolescent services here in the UK. For example, teenagers tend to be admitted at "higher" BMIs (we're still talking about <16 as opposed to <13-14 for adults though). Weight gain is easy to avoid on general adolescent psych units (one friend spent her whole stay smoking pot with the other patients...oy) but more difficult in the specialist units. Rhodes farm, which someone has mentioned already, is pretty much the strictest child and adolescent ED unit in the UK. People with eating disorders are terrified of it because they've used tactics such as putting blended mars bars down feeding tubes! Still, they do get results.

    Adults tend to have a very different experience. As before, they are usually admitted at much lower BMIs: <14 for first time patients, whereas chronic patients may have a treatment plan which allows them to maintain a BMI of 13-14 in the community, only being admitted for refeeding (up to BMI 14-15) when their BMI drops under 12. Weight gain is very easy to avoid in general psych units and not all that difficult in adult units, depending on which area of the country a person is in. There are some units which cater very well for treatment resistent patients (St Georges in London is one of them), but many others will just discharge people who are non-compliant. I have witnessed adult patients crying over their discharge because they actually WANT to recover and know they can't do it at home, but also can't eat with the inadequate reinforcement in hospital, and so have been given up on. It's inhumane and shows a lack of basic understanding of the fundamentals of eating disorders, which is shocking for a specialist unit.

    The gap between adolescent and adult services is a huge one. I fell down it myself. Not that I'm bitter or anything...!

  21. As someone who has experienced an NG tube I didn't know whether to laugh or be appalled to hear it described as a "soft tiny tube." I was told that too, it was a pediatric tube, it would be small. Small tube being snaked up your nose and down your throat into your stomach is still (for many, this girl included) a horrific and traumatic experience. Small and tiny didn't mean it wasn't painful and horrible, even in skilled hands. Tubes can go either way - they can be seen as status symbols (sadly) or they can be a deterrent to refusals of food. For me it was so horrible that if put in the hospital again the threat of a tube might make me eat. I resented being told it was a small, soft tube and not being warned at what a horrible experience the placement of the NG tube really was, even though I had a kind tech and a nurse holding my hand.

    My experience in the US has been you will be told you cannot refuse, but in the end they cannot make you eat. Though most will. I was also told I could not refuse the NG tube, and when I did no one knew what to do because they weren't used to people refusing. In the end they could not tube against my will, but I was talked into it.

    (Interesting mention of Zyprexa - I've been on doses as low as 2.5mg and doses as high as 15mg - and it was not the huge anxiety reliever doctors promised for most of us on the ward. And the side effects can be horrible. Most of us on it felt we were still as anxious, but less able to "act" anxious because of how heavily sedating Zyprexa can be. If it were as useful in anorexia Zyprexa would have an even bigger money maker on their hands than they already do. I wish it worked well. Many of us wish any drug would work well. That's not to say it doesn't work for some, certainly it can be helpful - but I haven't seen it work many miracles.)

  22. I have to agree with the anon above. I was given quetiapine several years ago, which as you probably know is in the same class of drugs as zyprexa. I was prescribed it after effexor made me manic, so it wasn't in order to increase my appetite - I had no objections to it on that front as I was fairly ED-free at the time. It really didn't help with my anxiety, it just made me feel horribly jittery but sort of zombified at the same time, so I'd end up feeling really trapped and want to hurt myself even more. I was only on a tiny dose compared to most people. I don't get on with psychiatric medication in general - I am extremely sensitive to side effects - but atypical antipsychotics can be less wonderful when you are the patient rather than the doctor.

  23. Hi Laura
    Thankyou for all the work you do.
    (Marcella you may find this helpful too)
    I am an Australian who spent approx four months in a private clinic close to Melbourne.
    Prior to this I was in a private psych unit for approx three weeks, during this time I did lose weight as I was not watched and was able to exercise and skip meals, flush supplements etc. It is worth noting however that I did not enter this facility voluntarily, I was talked into staying for a night and then not let out, and I did not have family support (I refused to contact them as I was quite sure I could fix things on my own)

    My family eventually got me out and brought me home while we searched for a suitable facility.
    We found The Geelong Clinic (about 50 mins from Melb.) It is a private facility treating anxiety/depression and has facilities for 8 ED patients.

    It is not a hospital and therefor you must be reasonably medically ok to enter (they still take stats etc each day) and patients enter voluntarily. The youngest they take is 16-17.

    We discussed what I had been eating prior to my entering and for the first weekish I was on liquids only, juices, custard milk and later soup.

    My meals built up gradually and was reviewed each week in a group discussion with psychologist, psychiatrist, head nurse, me family and OT.

    The best part of this clinic, was that although it was hard and we struggled and there were days that eating was terrible but we all knew we wanted to be their and the peer support was fantastic, i credit my success to the other patients and I know they do the same.

    Patients who lost weight, or were not cooperating (which was rare) were given counselling, and a weekend at home if needed to try and renew their commitment. I can't recall anyone leaving the program and 2 years later of the 6 girls I was with, 5 of them inlcuding myself are in recovery and maintaining a healthy weight. Which I think are decent stats.

    I would be happy to talk more about my experiences on

  24. I hope you're going to balance this out by asking for stories of home refeeding were patients were able to continue refusing to eat.

  25. Anonymous last,

    That's the whole point of this inquiry! OF COURSE patients are often - in fact MOST of the time are able to continue to refuse to eat at home.Trying to understand what factors help or hinder that in the hospital setting and how that helps us understand what to do at home.

  26. In my experience at two different hospitals
    1- not eating was not an option (this was a voluntary resi)
    2- I was sectioned to the hospital and was given a feeding tube when I refused.

  27. around the issue of medication and consent - in the UK although parents and doctors can legally decide on a course of treatment against the will of a minor (it's very different if the patient is over 18) the prescribing of medication in children is relatively rare and in practice many doctors prefer the patient him or herself to agree to take the medication rather than rely on the parental wish that it should be prescribed. The consensus on the efficacy of prescribing for this group seems to be that there isn't much consensus yet

  28. Ok, so I'm really late to the party on this one. I' interesting case, according to my psychiatrist. I'm 21, currently with a higher-than-healthy-weight-range BMI. But I've had anorexia and bulimia for almost a decade and while I no longer meet the weight criteria for anorexia, I do very clearly meet it behaviorally.

    In almost all treatment I've been in, I am compliant to a point. I dislike inpatient treatment enormously. I do not live in the same country as my family, but when I did, the Maudsley method which was attempted nearly ripped apart the fabric of my family. I don't think any of my family will ever forgive me for it. I also am poignantly aware that my family do not believe I'll recover. They think I'll be the daughter who is finiky about food for the rest of my life. My mum sometimes asks me if I eat like a normal person. The answer, should i ever say it outloud, should be a resounding 'no'. I'm in hospital for rehydration, electrolyte imbalance and hypoglycaemia at least monthly; December 2010, 3 times.

    During my time as an inpatient, for 4 months at a large Sydney public hospital, in 2009, I was one of the hospital's more difficult patients. I was there 'voluntarily' - which meant that if I didn't agree to go, I would have been there under the mental health act. I spent most of my time refusing meals, vomiting up meals or hiding food. For several weeks, the only give away that i wasn't complying with the program was my blood test results; in fact I had a nurse say "but you're complying with everything we do! Why are you still so sick?"

    I'm not proud of where my life is headed. I'm not proud of the things I've done. During my non-compliance time as an inpatient, anorexia was so loud in my head that I simply could not do the program. At one stage I was allowed to refuse to eat for 10 days before a tube was considered an option and then, if I agreed to drink 1 fortisip (300 calories) a day, I didn't have to have the tube. In retrospect, giving me options like that was not only ridiculous, but also very, very negligent.

    I guess I mainly did it because I could get away with it - and part of me wanted to see just how far I could push it. I pushed it far enough that I was eventually confined to complete bedrest because the team thought I would have a cardiac arrest walking around the unit.

    Laura - I love your blog. It gives me hope that some parents will do so much to help their kids. I probably can't have kids. Even if I physiologically can have kids, I'm not sure I'd risk bringing up kids with someone as crazy as me. But I really do admire the work that you do!

  29. Ella,

    Never too late and thank you for the moving description and for the kind words.

    I want you to get well, completely well, and I believe in you being able to recover and life free of your eating disorder. I believe you have things to share that will help others, insights that will help others recover. But you have to recover first. Is there anyone in your life that I could talk to to help them find resources to help you?


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