If your child or adolescent is admitted to a hospital for the medical complications of an eating disorder, you need to carefully assess adequacy of care at that hospital.
Common sense would dictate that we not become aggressive, belittling or demanding of professionals on whom our child is temporarily dependent for medical intervention, however you should not hesitate to inform yourself, rely on your intuition and experience and ask questions. The days of “because I said so and I am the doctor” are gone in medicine, or should be.
There are basically two types of medical hospitalizations for eating disorder crises: 1. the emergent kind at the nearest hospital, regardless of that hospital’s specific eating disorder expertise and 2. the urgent kind in a hospital which you have sought out specifically because of their expertise in treating the complications of eating disorders.
In the first kind of hospitalization, you may need to be patient until imminent danger of death has passed and then arrange transfer elsewhere. An example of this might be an admission to an internist, pediatrician or hospitalist at a community hospital for dehydration, electrolyte imbalance, severe inanition (wasting) or syncope (fainting). We had an adolescent patient referred to us once whom the police had found semi-conscious at the side of the road, grossly starved and cold. This extreme is what I mean by an emergent admission for inanition. If such an admission is needed and the hospital team does not have an AED handbook for medical care, provide them with one.
The second kind of admission (urgent, experienced or specialist hospital) is more usually done for a patient who may or may not be expected to die without such care, but who is in any case compromised medically and/or may reasonably be feared to be in danger of re-feeding syndrome if re-fed in another setting. Such patients might be expected to meet AAP admission guidelines for orthostasis, bradycardia, etc.
The following is a check list I am proposing for parents to use in evaluating the adequacy of their child’s hospital care:
- Does the hospital team resent your involvement as a parent? Are you blamed for your child’s illness? Is your hospital contact with your child severely limited? If the answer to any of these questions is “yes”, move this hospital to the “unacceptable” pile and seek care elsewhere as soon as you can.
- Who is principally in charge of your child’s medical care? This needs to be an attending physician or nurse practitioner. If it is a team of doctors who rotate, ask who will be responsible for communicating daily with you about such things as weight progress and labs.
- How often is phosphorus checked? This will need to be daily (or more often in the Intensive Care Unit, aka ICU) as long as calories are still being adjusted upward.
- What does the doctor/team consider a preliminary goal weight? Most hospitalizations are not long enough to achieve full weight restoration and ultimate goal weights usually only matter this early in the hospitalization in those cases where a need for weight restoration is ignored, for example where the doctor/team argues that the “patient’s BMI was too high to begin with” (!!). For most patients the issue addressed under Point 5 below is much more critical. I strongly recommend that weight goals not be shared with the pediatric patient either by the staff or by the parent.
- Although it is common for a patient to actually lose weight for the first 2-4 days of re-feeding due to fluid shifts, after that the weight curve should be steadily upward. Ask: who will calculate weight gain and is it done daily? Excellent weight gain should average 0.2 kg/day. If it is lower than that see Point 6 below.
- Calculating calories/food intake: the majority of patients hospitalized for an eating disorder will have lost weight relative to their own norm. This means they will enter the re-feeding process hypometabolic as the brain tries to conserve energy in a time of famine. Once you begin re-feeding, however, the metabolic fires will jump up and the patient will need many more calories than ever before. It is critical that calories/food are titrated to weight gain, so that if the rate of gain is much less than 0.2 kg/day more food will be added. Fat must never be allowed to be restricted. On this specific point your questions for your treatment team are: What is the start point for caloric intake (low is fine)? How will the calories be increased? By whom? How often? And—importantly—is phosphorus checked during this time? I strongly recommend that discussions of calories/exchanges/fat grams not be shared with the pediatric patient by the staff or by a parent.
- How are meals supervised? I can’t tell you how often kids report back to me that they were able to hide food or spit out medications because of a lack of adequate staff supervision.
- Aftercare should be discussed from the outset, after about 24 hrs of hospital care. Everyone is usually too upset for the first 24 hours to take in much information about aftercare planning, but in order to maintain the gains made in the hospital and prevent re-hospitalization, it will be important to hand-off the pediatric patient to an outpatient team whether that team is a “Maudsley” style team, a day treatment team or other. How will the hospital team plan for follow-up care and communicate with those providers (including the family of course!)?
- What criteria do you use for discharge?
- How do you monitor access to the bathrooms in the hospital so that my child is safe from exercise or purging? Experienced teams will always have a plan for this. It matters.
- Are patients with very low heart rates or personal histories of fainting monitored on telemetry? We have had a handful of patients who experienced “asystole” or stopping of the heart, which caused them to “faint”. Had they not been on telemetry we might have just ascribed this to “dehydration”. On the cardiac monitor we were clearly able to see how, in some vulnerable patients, the heart can be acted on by a simple stimulus such as a blood draw, standing up from lying down, etc. with an episode of cardiac arrest.
So to recap the questions:
- Does the hospital team resent your involvement as a parent?
- Are you blamed for your child’s illness?
- Is your hospital contact with your child severely limited?
- Who is principally in charge of your child’s medical care?
- Who will be responsible for communicating daily with you about such things as weight progress and labs?
- How often is phosphorus checked?
- What does the doctor/team consider a preliminary goal weight?
- Who will calculate weight gain and is it done daily?
- What is the start point for caloric intake?
- How will the calories be increased? By whom? How often?
- Are calories increased to meet any loss of weight or stagnation in weight gain?
- Is phosphorus checked during this time (of caloric increase)?
- How are meals supervised?
- How will the hospital team plan for follow-up care and communicate with those providers?
- What criteria do you use for discharge?
- How do you monitor access to the bathrooms in the hospital so that my child is safe from exercise or purging?
- Do they keep their patients with bradycardia (low heart rate) on telemetry?
I myself answer these questions on a daily basis, as does my partner. I am relieved and happy to see a parent with a written list of questions for me, as that means I can easily be held accountable for getting to all of their concerns. Expect no less.