This post is a re-designed extract (yes, edited) from a Weekly Forum Roundup of 2012. Patient underfeeding in hospital settings is rife and particularly dangerous when a patient is actually admitted due to underfeeding in the first place.
Inpatient underfeeding does not refer to the patient refusing to eat, but rather to the hospital itself failing to provide enough nutritional support to secure an eating disorder patient’s health and chance at remission.
Unfortunately inpatient underfeeding is not an uncommon issue when recovering from a restrictive eating disorder. Not only will it be more common than not if you are in the so-called healthy body mass index (BMI) range (yet below your body’s own optimal weight set point), but it also occurs for patients who are even below the arbitrary BMI 18.5-24.9 range.
Inpatient care refers to hospitalization for the primary purpose of medically stabilizing an eating disordered patient and attempting to restore sufficient weight such that health might be maintained upon release from hospital.
Inpatient care is indicated when the patient is unable to restore weight and/or labwork results suggest that, without intervention, the patient will likely die.
Residential treatment facilities often provide both intensive inpatient care and then also offer extended stays to allow for continued improvements and cognitive support to improve the chance that the patient does not relapse following release.
For the purpose of this post, it does not matter whether you are in a hospital or residential inpatient setting, but rather whether facility-generated underfeeding is going to hamper your recovery efforts.
A 10-year prospective study completed in 2008 confirmed that the proportion of underfed patients was unchanged during that time and sat at a shameful 70% [R Thibault et al., 2008]. These data of course refer to patients in hopsital for all manner of conditions, but those with eating disorders are among them.
In fact enough patients with anorexia were dying in hospital wards, that the MARSIPAN (Management of Really Sick Patients with Anorexia Nervosa)project was initiated in the UK in 2012 to try to address the problem [P Robinson, 2012].
Two case studies of the underfeeding of anorexic patients, Science of Eating Disorders: Extreme Medical Negligence, are worth a read to get a good sense of how disastrous the outcomes of the pervasive failure to feed patients will be for those with eating disorders.
The Good And The Bad
Use what you can and discard the rest.
This discussion on the limits of many, many inpatient programs around the world today does not mean that these programs are not stuffed full of very skilled and genuine practitioners who have every intention of helping you.
Some of you may have had an opportunity to watch Dan Ariely’s TEDTalk where he describes his rather excruciating stay in a burn unit and the practice of ripping the bandages off quickly rather than slowly over time.
He was sure that a slower approach would have been more suitable, but the nurses were adamant that the fast approach was the right way to go. However, as a scientist, he was subsequently able to run an experiment to prove that the slow approach does involve less pain for the patient.
He then returned to the burn unit and discussed these findings with one of his favorite nurses. She was in tears after finding out that her method caused him more pain. She believed that what she was doing what was in the best interests of the patient.
Hospital settings are full of well-meaning human beings who really believe they have got your back and are doing what is best for you. However, very little of medical practice in these settings is actually evidence-based. And very few practitioners know that what they earnestly apply in practice has no basis in fact.
When you enter these very large bureaucratic systems, you are at an extreme disadvantage from the outset. You don’t know the lingo, the culture, the hierarchy, the do’s and don’ts, or the expectations they have of you in your role as patient. And yes, there are a lot of expectations placed on a patient.
In some hospital settings there are patient advocates on staff. If you happen to be in a hospital with someone in that role, then take advantage of him or her. Sometimes, you are admitted in crisis and therefore there will be no tour of the facilities, or opportunity to be introduced to the various practitioners with whom you will be working.
If you find yourself on complete bed rest in a hospital with no time to plan for it, then start asking a lot of questions to pull the orientation to you from that point. Ask whether there is a patient advocate on staff and could you make an appointment? Ask whether there is an itinerary for what practitioners you will be seeing and when (that way you can be pre-prepared with some questions when you meet them).
The powerlessness you can feel in these circumstances can be greatly alleviated by becoming proficient at understanding the expectations and the limits placed on you as a patient. Ask lots and lots of questions.
You are a team with your treatment providers and you have a common enemy: the eating disorder. Keep in mind that your practitioners are regularly abused by patients who are completely in their eating disorder’s control and if you were in their shoes, would you find your negotiating position reasonable or does it sound like just another ruse to keep catering to the eating disorder?
Being extremely honest with your team will help to build trust that you are working as hard as you can to recover. If you slip, then admit it. No one is expecting perfection.
And if you cannot agree with the treatment team and you cannot trust them, then it is a finite amount of time in which you will be in their care.
Depending on the country, there are greater and lesser areas of control where, even after release from an inpatient program, the team has quite a bit of say on whether you can continue to remain in an outpatient setting – meaning you have to see them for check-ups and they can require that you be re-admitted if you are failing to meet their criteria.
However, make your GP your ally if you no longer want to follow-up with the hospital treatment team post-inpatient care. Be proactive and see a counselor or therapist and see your doctor regularly and indicate that your treatment team can communicate with your regular physician for any updates they wish to have.
If you liked your treatment team, then take advantage of all the post-release support you can receive from them, of course.
The topic of hospitalization for eating disorders is completely fraught. The ideas and suggestions for solving the particular challenge of underfeeding in inpatient settings that I have provided below should not be interpreted as directives or advice of any kind.
It is important to me to address these topics as they are important to this community, but the experiences that each of you may have within inpatient settings can vary dramatically and the outcomes can be not just merely medically stabilizing, but also often profoundly and permanently life-saving for many.
I have a lot of opinions on the current models used within most inpatient settings for restrictive eating disorders, but they are just opinions and not prescriptions.
If you only take one thing away with you from this long post, it should be that the only way to navigate your passage through enormous bureaucratic and somewhat de-humanizing systems is to ensure that you respect your own humanity and those of others around you at all times to the best of your ability.
Remember Dan Ariely’s nurse and that in some ways those who are tasked with caring for you in these settings are as much subject to the de-humanization of the hospital setting as you can be, at times.
Why Are They Starving Me?!
As Rebecka Peebles (assistant professor of pediatrics at Children’s Hospital Philedelphia) was quoted as saying in her recent presentation at the Maudsley Parents Conference in Boston: “There is a long history of inpatient programs in hospitals re-feeding patients too low and too slow. We need to feed children with anorexia more, and more quickly.”
We also know from Andrea Garber’s research in 2012 that the policy of “go low and slow” found in almost all inpatient re-feeding programs has absolutely no evidence to support the approach. In Garber’s trial, the go aggressively high and fast in re-feeding resulted in much shorter inpatient stays and better outpatient outcomes as well [AK Garber et al., 2012].
I also reference these results often as well because it is worth repeating:
“Discrepancies between evidence-based, efficacious interventions and what actually occurs in practice are frequently so large as to be labeled a “chasm” by the Institute of Medicine. These gaps occur across prevention and disease management behaviors, and across settings, conditions, and population groups. Well-publicized reports by RAND researchers have documented that on average just over half of recommended health care practices are implemented, and the situation may be even worse for prevention and health behavior change interventions.” [R.E. Glasgow, K.M. Emmons, 2007].
That’s super, but try telling all of this to your treatment team.
It’s fine to know that your treatment team hasn’t got a clue, but when they control the circumstances under which you will be treated, what are your options?
Important Medical Considera-tions
Before you go head long into finding ways to up your calorie intake in an inpatient setting, please make sure that you are first clear on the medical situation you face.
To be very sure, have a family member or friend in with you when you discuss the calorie guidelines you will have when you enter the inpatient program. Your status needs to be discussed with the medical doctor assigned to your case, not just the dietician.
There are, in some circumstances, medically valid reasons for restricting your calorie intake from where it might have been while you were attempting recovery outside of a medical setting.
You don’t want to make the assumption that the only reason for your calorie intake being too low is that the hospital adheres to outdated re-feeding protocols.
It may be in your case that the physician is concerned that you have shown signs of being unable to modulate your insulin levels effectively just yet (the result of extended periods of starvation) and she wants to carefully even out the intake to try to help your body get to a point where it is no longer struggling with insulin management in response to normal intake of food.
Nonetheless, “go low and slow” is not an evidence-based protocol. Tetyana Pekar, Science of Eating Disorders, provides a great synopsis of some recent evidence, beyond that of Andrea Garber and her colleagues’ results, on what constitutes evidence-based re-feeding guidelines: Avoiding Re-feeding Syndrome in Anorexia Nervosa*.
“The notion of ‘starting low and going slow’ with the prescription of daily calories seems unlikely to be important in preventing refeeding syndrome. Recent publications suggest this approach does not necessarily add to safety in the refeeding process but rather the contrary. It typically results in weight loss and protracts hospitalization and nutritional recovery.” [MR Kohn et al., 2011].
*I would like to highlight the fact that the guidelines developed by Kohn et al., indicate an average intake of 2700 calories/day by the end of week 1 (emphasis mine). That is not the final intake expected, and as Philip Mehler has already identified in a meta-analysis, the daily intake in inpatient settings range between 3600-6000 calories/day [PS Mehler et al., 2010].
What will be of import, and only in the first few days of re-feeding, is that capping the percentage of calories from carbohydrates to 40% of the total appears to greatly lessen the shift in electrolytes that can precipitate re-feeding syndrome.
Make sure you and your involved family members are prepared with the above article if it does indeed appear as though the cap on your calorie intake is only based on a generic “go low and slow” approach and has not been designed to address your particular medical status.
Once your medical status has been made clear to both you and your trusted family or friend who is with you, then let’s continue on with options assuming that there are no underlying medical reason why you should not be consuming an unrestricted amount of food while in recovery…
Advocating for yourself is difficult when your brain is undernourished and you are ill. So, the first line of defense, when you enter an inpatient setting, is to involve a trusted family member or friend. Fully.
Your eating disorder will resist your effort to be honest with a family member or friend. What could be better for your eating disorder than to be in a setting that will reinforce its control over you? An external brain, a well-nourished one, will advocate for the real you when you feel overwhelmed by the demands the eating disorder places on you.
One of the catch-22 elements of being admitted into an inpatient setting against your better judgment is that family members and friends are sometimes indoctrinated by hospital staff to recognize your efforts to try to be released as eating disorder-driven. Your friends and family are advised to rebuff those efforts in order for you to get well in a safe environment.
That indoctrination is not entirely without merit. Many a patient admitted against his or her will, will beg and plead with family members to be rescued from staying there and it is the eating disorder wanting the reprieve, not the real you.
But in the cases we are discussing, the patients are looking to recover and are blocked from eating enough to do so, simply because they face protocols that are embedded in the false and unscientific assumption that “bingeing=bulimia”. In the effort to try to protect a patient from shifting from anorexia to bulimia, professionals have traditionally assumed (without any clinical evidence) that catering to extreme hunger causes bulimic compensatory behaviors (namely purging/laxative and diuretic abuse).
In fact it is the eating disorder based anxiety that is fired up in response to eating that is actually what generates a shift from anorexia to bulimia.
What patients need during extreme hunger is unrestricted food intake and techniques to accept the massive energy intake.
They should be reassured that it is happening because they need the energy now and it doesn’t keep going interminably.
You have three options within a counter-productive inpatient setting: 1) locate and leverage any somewhat sympathetic (enlightened) physician; 2) leverage any opportunity for day passes or weekend passes to try to improve your intake when not under the watchful eye of the staff bound and determined to maintain your restriction of energy; and 3) leverage any family member or influential friend to advocate for release at the earliest possible medically-sound opportunity.
Generally speaking, a practicing hospital physician (not psychiatrist) may be persuaded with clinical data to recommend increases to your calorie intake.
It is less likely you could persuade a psychiatrist, although they are medical doctors as well. Psychiatrists as a group tend to be highly indoctrinated in the unfounded concept that “bingeing” will lead to bulimia for patients recovering from anorexia.
Dieticians also tend to be particularly reticent, however they are bound by the hierarchies within the hospital such that if a physician managing your case prescribes a certain calorie intake, then the dietician is bound to uphold that standing order.
Please keep in mind that I speak in very broad generalities, and there are both phenomenal dieticians and psychiatrists who can, and will, advocate strongly for aggressive and supportive re-feeding to allow for a chance at full remission.
If you have an opportunity to bring up the topic of the Minnesota Starvation Experiment with your attending physician, then do so. Within the blog post I Need How Many Calories?!! in the section The Facts I point to the fact that food intake guidelines for adolescents and adults are known to be based on faulty self-reports and surveys. There are clinical trial data referenced in that section to indicate that 3000 calories for an adolescent woman (under the age of 25) would be a normal non-restrictive daily intake for a non-eating-disordered woman.
You may get some traction if you suggest that you are requesting a trial period at the intake levels eating disorder specialists such as Rebecka Peebles, Andrea Garber and Philip Mehler would recommend (i.e. go high and fast to about 3600-6000 calories a day), and that you agree to have the trial revoked should you show any evidence of bulimic compensatory behaviors. But tell the doctor that you want your counselor working closely with you to provide you with CBT techniques to deal with the anxiety that re-feeding in these amounts will generate.
Because the restrictive eating disorder spectrum is considered a mental illness, it is common for the patient to find herself overlooked by hospital staff and health care practitioners— the assumption being that you are bound by your mental illness and therefore are not able to advocate on your own behalf. It is yet another reason why being honest with family and friends about your restrictive eating disorder stands you in good stead should you be admitted to an inpatient facility against your better judgment.
Let your family know that you are being underfed in your current setting and that this is counterproductive to your efforts to get to a full remission. In circumstances where you are not legally considered an adult, then you will definitely need your parents on your side.
Parents tend to go one of two ways when it comes to a circumstance where their children are being cared for in professional and bureaucratic systems. Mothers and fathers can be fierce advocates for their children, however they can also be prone to their own anxieties, fear of authority and fear of conflict so that they back away from hearing their children’s demands for help. They can sometimes also be disconnected from the situation altogether (in cases of divorce etc.).
Always give your parents the opportunity to advocate on your behalf but if they back away, do not despair. Consider involving an aunt or uncle, or an older adult sibling as your back-up plan. Sometimes a third-party family member can galvanize your parents into action quite successfully.
When you state you are hungry and are not getting enough food, then you and your advocates can push very hard against the system to insist that they provide scientific evidence that continuing restriction will provide for better long term remission outcomes when compared to unrestricted intake— i.e. responding to extreme hunger.
Hospital staff and practitioners should be required to provide their clinical data that confirm allowing a patient to eat what she needs will precipitate relapse to bulimia rather than full remission.
Of course, no such clinical evidence exists.
And just as when you advocate on your own behalf, make sure your family does not waste any time dealing with practitioners too far down the hierarchical chain of command to be able to rectify the situation.
Day Passes and Weekend Passes
If there is no movement towards providing you with robust daily energy intake while in an inpatient setting, then both you and your family should work towards leveraging day passes and weekend passes.
This option is not as ideal as achieving standing orders to reflect your actual energy intake requirements on a daily basis, but it will still move your forward in recovery faster than simply following the too-low intake guidelines provided within the hospital setting.
It is up to you whether you wish to be honest with hospital staff about your food intake when you return from a day or weekend outing or not. The risk of developing bulimia is set in the continued application of restriction, not the result of eating.
If it is possible for family members to bring you additional snacks and food, then definitely take advantage of such an option to improve your daily intake as much as possible.
All inpatient settings weigh the patients regularly and staff will often express concern and want to restrict intake should be patient be gaining weight at “faster than a healthy rate”. Yet again, the concept of “gaining weight too fast” is completely unfounded in a medical sense.
If you find that you are being lectured about your weight increases and/or they want to further restrict your intake in response to your weight increase, then I would suggest you will not reap any further benefit from remaining in that facility.
Sometimes, things have to be given a chance to work. The initial shock of finding yourself in the high-structure and low-autonomy bureaucratic hospital setting can make you unwaveringly sure you will hate being there and will not gain anything from the process.
Early release is something to consider only if all other avenues of trying to have your intake match your energy requirements have failed and you feel that your progress towards remission is being hampered and not helped by remaining within the inpatient setting.
Obviously, medical authorization to leave is important. You are not going to do yourself any favors if your symptoms are unstable and require medical intervention to ensure you stay alive.
If you determine, after giving yourself a bit of time to acclimatize and assess the hospital services in their entirety, that you still need to leave in order to progress with your push towards remission, then keep your attention focused on doing whatever is advised to support the stabilization of any symptoms that might be cause for concern.
If your admittance involved either family members and/or physicians/psychiatrists having you admitted (alternately called “sectioning” or “committing” a patient), then you will not be free to leave on the basis of your decision alone. It will require that you have managed to make progress as defined by your attending physician.
In those cases, ask your physician to make it very clear what you must achieve in order to meet the bar for release. If you feel the criteria are unacceptable and yet your requests to have them changed fall on deaf ears, then involve your family or friends in helping you to be released perhaps either into their care, or into another facility or outpatient services to which both you and the original admitting physician(s) can agree.
The Weight Issue
Another unpleasant facet of many inpatient settings is that you will be assigned a weight range that you are expected to hit and not exceed.
On this topic, you and your family or friend advocate, will want to identify how they arrive at the number they are assigning you.
For those who are under the age of 25, they may use your childhood growth charts as a way to identify the percentile range of weight in which you tend to reside.
Confirm they are using your pediatrician-supplied growth chart and then ask them to identify the range of weights that apply to the percentile you have averaged throughout your childhood years given your current height and age.
Then ask them to identify any periods in your childhood where you appeared to go above the usual percentile range in which you have usually stayed. The percentile range is an average and children often have several points at which they veer upwards in weight in the body’s anticipation of massive growth spurts.
And finally ask them whether it is reasonable to assume that your percentile range includes both the average and top peak from your chart as it is likely you have circumvented some development as a result of the restrictive eating disorder and the body may see fit to initially veer upwards to the peak percentile before tapering back down naturally as you mature further.
This negotiation will at least allow for more flexibility on the target. Also, make it very clear that you do not want to discuss your weight increase or the rate of increase at all with any of the practitioners during your stay in inpatient care. You wish to be blind weighed at all times.
As there is no clinical evidence that gaining weight at any rate generates any medical risks whatsoever, you make it clear that you are not concerned with how quickly the weight is restored at all and that there is no such thing as “too fast” for weight restoration efforts.
In fact you can let them know that one of the markers for a likelihood of readmission (i.e. relapse) includes low rate of weight gain in an inpatient setting [J Castro et al., 2004].
However, more commonly, they are not using childhood growth charts, nor are they applying any evidence-based science to the topic of what weight they are assigning to you as your target.
They are applying the minimum weight that is considered, by tradition and not even particularly by scientific evidence, likely to provide medical stability. It is a good idea if you simply treat your stay as having little to do with actual recovery from a restrictive eating disorder, and more the initial necessity of medical stabilization to avoid death.
Your eating disorder will be very keen to hold onto their weight assignment to you as though it reflects the maximum allowable weight for you. Your eating disorder will be equally excited to apply their re-feeding calorie guidelines as the maximum allowable amount for you as well.
Empirically, I can tell you that most of the patients I know who were in inpatient settings with strict upper limits on daily calorie intake and released at BMI 18ish, all relapsed after release.
To avoid that, treat your inpatient stay as a first step only and maintain your focus on the medical markers that will indicate you are sufficiently stable (resting heart rate, heart issues of any kind, electrolyte anomalies, etc. etc.) to begin a real recovery effort once you are released.
When I created the Journal back in March I obviously announced its availability but I didn’t really talk about why it might have any value one way or the other.
For those of you already working with counselors, therapists and psychologists, you will probably already be applying journaling as a tool in your recovery efforts.
The Journal that I created amalgamates a food journal, which is a common tool used for those in recovery from restrictive eating disorders, with a traditional stream of consciousness free-form journal as well as pages interspersed throughout with clinical techniques for supporting continued progress in recovery as well.
A food journal allows you and your counselor to identify wrong assumptions and avoidant behaviors that may crop up directly as a result of certain situations that surround your consumption of food. Human beings are optimized to provide themselves with enough energy to survive within the social context. We are social and emotional eaters for a reason: it maximizes our ability as individuals to thrive.
When you struggle with a restrictive eating disorder, so much of the social/emotional connections with food consumption have been hijacked by eating disorder-related anxieties. This disconnect is also heavily reinforced by our society’s current preoccupation with the presumed superiority of what I call consciousness eating (sometimes misattributed as mindful eating).
Consciousness eating presumes that having our emotions active and interacting with our hunger and satiation cues is inferior to the process of applying our conscious, or logical, mind to the assessment of whether the desire we feel to want to eat is in fact something that must be addressed for logical reasons.
We cannot eat logically. Our logical minds are too late to the evolutionary party, by millennia, to actually offer any value to how we pursue and stay optimally energized.
This reverence of the logical mind and twinned disdain of the emotional mind is, from an evolutionary perspective, ludicrous. The structures within your brain that support your emotional landscape are robust, distributed and ensure your survival to a level that your logical mind couldn’t even hope to achieve on its best coffee-upped day!
I often mention the patients with lesions and trauma to the emotional centers of the brain (you’ll find one in particular who is referenced by multiple neuroscientists and neurologists in their bestseller books) who are institutionalized despite the fact that they have fabulous and intact IQs; have completely intact memory, retention and retrieval faculties; and can sustain a conversation on any topic pertaining to the past (historical and personal) to the present and future (current affairs, debate, analyses and hopes and dreams).
But ask them what they would like to have for lunch and then you see why they need the 24/7 oversight and care. Without emotional salience, their logical mind is completely stymied by what might be the better option: lasagna or burger and fries.
How you feel about your food is how you not only survive, but also thrive. The food journal is a way to stitch back all those broken connections.
Recovery is not just about the re-feeding obviously. However, the re-feeding is foundational because without it you don’t have well-nourished conscious or emotional minds with which you could get to a robust remission, never mind maintain it.
If you are about to enter, or are currently in, an inpatient setting, then I hope that this blog post arms you with all the tools you will need to maximize the value of these environments all while neutralizing their drawbacks.
Just remember, it is all about you. If you have to remind the bureaucracy of your foundational value, then do so: it’s all about the patient.
Tools for Recovery are available in the youreatopia.com Shop