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Thursday 19 July 2012

What every ed clinician should know - the gospel according to Charlotte

No two eating diorder patients are the same

If you are treating all eating disorder patients in the same way, you are doing something wrong.  Boys and girls are different.  Each patient comes from a different creed, class, colour, country.  Each has a unique path to an eating disorder.  Trying to fit each eating disorder patient into your particular "model" of treatment is doing nobody any favours. For example, there is no clinical evidence to suggest that CBT is particularly effective for pre-teens.  Blaming a 12 year old for not "benefiting" from six sessions of CBT is just absurd.  Whatever your prejudices and theories, don't force your patient to match your preconceptions.  

It is well known that many eating disorder clinicians have had an eating disorder in the past.  Try to remember that your patients are not you.  They aren't you, so only treating them the way you felt was successful for you, is cruel.

The theme that runs through all successful treatment is weight restoration.  Normalising nutrition  should be your first goal.  Weight restoration is essential BUT it is not enough. Both the patient and the carers will need help, support, patience and fine tuning to achieve that goal.  Expect resistance, extreme resistance.  Expect anxiety, pain, sadness, hopelessness, anger.  There is no easy path to recovery.  Your job is to help and support them on the torturous path to weight restoration, not to react to the anxiety and allow a patient to remain underweight.  Weight restoration can take a long long time, especially for older and longer term patients AND for growing adolescents.  A woman's brain and body continue to develop to the age of 21.

Leaving a patient underweight is not treatment.  It is collusion with the eating disorder and condemning the patient to a host of medical conditions and serious life threatening consequences, even death.  

Nobody talks anybody out of an eating disorder.  If it were that simple, then we would know what to do.  Try reframing an eating disorder as similar to schizophrenia.  No one's been "talked" out of that either.


An eating disorder is a physiological and a psychological disorder.  


Nobody knows what causes an eating disorder.  There are plenty of theories out there but it is essential to think outside the box.  If any of these theories upon which you are basing treatment were correct, we would know how to treat an eating disorder by now. Blaming popular culture, pictures in magazines, parents, attachment issues, family dynamics, "control" issues or whatever other psychological "causation" theory is your particular "pet" is not proven.


Regarding an eating disorder as a purely psychological problem and treating it as such can prolong and perpetuate the disorder, condemning a patient to osteoporosis, a weakened heart, kidney failure, dental problems, poor vision, death.  



Treating the purely physiological symptoms by refeeding to 90% of an Ideal Body Weight ("IBW"), without addressing an aftercare plan, continued weight gain, help with anxiety, etc. is like throwing a drowning man back in the water. Getting an anorexic to eat enough, or breaking the binge purge cycle for bulimia or the binge cycle for BED is not the answer. If it were, your job would be a heck of a lot easier. In fact, you probably wouldn't have a job because that can be managed by a variety of non-specialists.


Refeeding an anorexic or normalising nutrition for someone with bulimia or BED is the first step to enable them to start to recover.  Talking about it doesn't repair the malnutrition or repair the physical damage to the body and the brain.  By the same token, just refeeding without exploring therapeutic avenues and being aware of co-morbid conditions often lead to relapse.

It should be noted that therapy is more effective once the patient's weight is nearing its normal range.  The theory is that the brain is receiving sufficient nutrition to begin resuming "normal" function.  This, to me, makes a lot more sense than the amount of time spent breast feeding or whether a mother has difficulty expressing emotion.


Causation and affecting factors
(With thanks to ELT)


Many eating disorder patients have co-morbid conditions such as OCD, anxiety or depression. Some of these conditions are exacerbated by an eating disorder. However, some expressions of these disorders are symptoms of an eating disorder. It is impossible, unless you have documented clinical evidence of a pre-existing disorder, to diagnose a co-morbid condition and treat it until nutrition is normalised and a healthy weight range has been established. However, if there is evidence of a pre-existing condition, treatment protocols may have to be altered to take this into account.

Most people with an ED have NOT been sexually abused, but some have, and sexual abuse IS considered a 'risk factor' for EDs even though it is not the actual cause of the ED. That is, one might say that there is a trigger for the onset of disordered eating that can lead to metabolic changes which disrupt the functioning of the brain in people with an inherent vulnerability. If we think of the recent legal case involving 'E' that was widely reported in the media, sexual abuse made re-feeding MUCH harder, because 'forced' re-feeding was a re-enactment of past trauma. 



Thus, understanding the nature of the stimulus for the onset of disordered eating can be very relevant in some (but probably not all) cases of EDs. 


Another point is that there is research evidence to suggest that a significant proportion of people with EDs have a neurodevelopmental condition (e.g. autistic spectrum). In this case, prior knowledge of the presence of autism may be important (e.g. via a developmental history) because it may be that such individuals need different types of treatment and different approaches to re-feeding to take into account very high levels of anxiety, sensory sensitivities etc.

You don't have to be thin to have an eating disorder.

You don't.  Nor do you have to be fat.  You can be of quite normal weight.  


Judging the "seriousness" of a patient's eating disorder on physical appearance and weight is a nonsense.  I know of anorexia patients who are mortally ill at a BMI of 19 - within the accepted "healthy" weight range as specified by the WHO.  As each patient is unique (see above), so are their vital organs.  A heart does not conform to the DSM IV ideas of what constitutes "anorexia nervosa".  If a patient is underweight for their particular optimum function, the heart doesn't always hold on until the patient is "thin" enough to receive treatment.


The consequences of bingeing and purging are well known.  Many BED and Bulimia patients are of normal weight.  Judging the seriousness of their condition by just looking at them and weighing them could leave you with a dead patient.


If your patient presents at a normal weight, be thankful.  This gives you a chance to intervene early.  Early intervention produces better results in the majority of cases.  Be brave.  Just because the DSM says you have to be "thin" to have Anorexia Nervosa, use your gumption and start treatment before your patient is seriously malnourished.

There is a myth that Bulimia Nervosa is somehow not so "serious".  Not true.  

BED patients are at serious risk from  for type 2 diabetes, high blood pressure (hypertension), high blood cholesterol levels (hypercholesterolemia), gallbladder disease, heart disease, and certain types of cancer, alongside heart failure and respiratory failure.  

They are also likely to become physically ill due to lack of proper nutrition (Yes, you read that right!).

Weight and BMI

If you insist on using BMI as diagnostic criteria or as a tool for defining recovery, you should be aware of its shortcomings.  

BMI and the DSM

The DSM threshold for anorexia nervosa is a BMI of 17.5. Two points to notice. The first is that a person with a BMI of 17.6 is still “underweight”, albeit “moderate”. What is that about? I note that you are not “mildly” or “moderately” obese. This leads back to my “Fat is Bad and other urban myths” blog. The second is someone can be suffering from an eating disorder at a BMI of 20 +. You don’t have to be thin to be anorexic, or bulimic, or have an eating disorder.

BMI is one of my pet hates. I can do no better than quote from Wiki on this to explain my chuntering.

The body mass index (BMI), or Quetelet index, is a heuristic proxy for human body fat based on an individual’s weight and height. BMI does not actually measure the percentage of body fat.

While the formula previously called the Quetelet Index for BMI dates to the 19th century, the new term “body mass index” for the ratio and its popularity date to a paper published in the July edition of 1972 in the Journal of Chronic Diseases by Ancel Keys, which found the BMI to be the best proxy for body fat percentage among ratios of weight and height;[3][4] the interest in measuring body fat being due to obesity becoming a discernible issue in prosperous Western societies. BMI was explicitly cited by Keys as being appropriate for population studies, and inappropriate for individual diagnosis. Nevertheless, due to its simplicity, it came to be widely used for individual diagnosis, despite its inappropriateness.

However, BMI has become controversial because many people, including physicians, have come to rely on its apparent numerical authority for medical diagnosis, but that was never the BMI’s purpose; it is meant to be used as a simple means of classifying sedentary (physically inactive) individuals with an average body composition (Highlighting mine)



The most important thing to note is that a BMI of 18.5 is NOT a recovered weight or an IBW for about 95% of the population .  Ergo, 90% of IBW calculated as a BMI of 16.55 as a definition of recovery or as a point to end treatment is wrong.

Weight


Everyone has an “optimum function” weight range. This is a spread of weight where someone is at their best physically and mentally. The “normal” weight range is a BMI of 20 – 25 (well 24.9 to be precise but what’s a couple of pounds between friends?). There is a tiny (and I mean tiny) percentage of the population that is healthy at a BMI of 18.5. Why do some clinicians insist that every single eating disorder sufferer falls into this category?

I refuse to believe that all eating disorders patients are of the lean, slim, exceptionally fit marathon runner genotype. If they were, wouldn’t someone have noticed this? Some may be but I would argue that they are the exception to the rule and that the majority of eating disorder patients fit into the “normal” weight range (BMI of 20 – 25) for their personal optimum function.

Whether it is the insurance companies in the US or the National Health systems of the UK, Australia and New Zealand, discharging a patient at a “healthy” BMI of 18.5 is saving money, in the short term. There is a very strong argument that discharging a patient at a low weight is more likely to result in a relapse and readmission.

Saying “haven’t we done well” because a patient has reached a number on a scale and is now “recovered” does not mean a patient is mentally and physically well. Apart from the fact that BMI is a population screen and not a diagnostic tool, expectations that a patient is now “cured” can be confusing, disheartening and disempowering for the patient and the carer.



Eating disorders are deadly and require urgent treatment.

"Get them to eat a sandwich" or "You are not thin enough" or "You have to want to get better" or "She'll probably grow out of it" are not acceptable responses on a patient or a parent presenting with concerns about an eating disorder.   Nor is insisting that you need to find a "cause" for their eating disorder before physical conditions are addressed.  The patient requires physical stabilisation and normalised nutrition NOW.

Eating disorders kill.  Mortality rates for eating disorders vary widely between studies, with sources listing anorexia nervosa deaths from .3% to 10%. One fairly new study compared the records of individuals who had been treated at specialized eating disorders clinics with the National Death Index. Their findings for crude mortality rates were: 4% for anorexia, 3.9% for bulimia, and 5.2% for EDNOS (Crow, 2009). (With thanks to www.bulimia.com)

Eating Disorders are NOT "caused" by any of the following: a cry for attention, the result of abuse, wanting to look like the thin models in the magazines, attachment issues, a control issue or not wanting to grow up.

Get with the programme, people.  It  is 2012 and Hilde Bruche (and her clinical observations) should be left firmly in the last century.  No one knows what "causes" an eating disorder and any, or indeed all, of the above may have contributed to a patient's eating disorder.  That is not the point.


People with eating disorders are severely physically and psychologically ill. They do not need to "find their bottom" or "work out what caused it". Nor do they need you to satisfy your curiosity or spend fruitless months, severely malnourished whilst you try to parse out "causation" or make them fit in with your ideas about their eating disorder.   Their eating disorder is not your eating disorder, or your other patients' eating disorder.

They need urgent and specialised medical and psychological help NOW.  Restoring their physical wellbeing with normalised nutrition until they are at their weight range, whilst supporting them through this traumatic and difficult process is the way forward.  Writing your paper for the IJED can wait.


Prejudging what may have precipitated their descent into an eating disorder and labeling eating disorder patients or their caregivers does not help them recover.  Trying to work out what "caused" their eating disorder and disregarding their physiological needs puts them at a greater risk of long term physical impairment and, in 15% of them, at risk of death.


Patients don't choose eating disorder: Parents don't cause eating disorders


Patients don't choose to have an eating disorder.  Often they are unaware they are ill.  This may be due to alexithymiaanosognosia or other psychological complicationsErgo, they may not be willing to "own their recovery" or "want to get better".  Would you want to undergo a long, serious and anxiety provoking treatment, if you were unaware of, or unable to see how serious your illness was.  Making a patient accountable for their eating disorder and making them accountable for their recovery implies that the patient has chosen to not eat or to eat in a seriously detrimental way.  I find it helps to regard an eating disorder as a compulsion, rather than a choice.


Parents do not cause eating disorders.  In fact, often parents are the best resource to help a patient.  I am not saying there aren't any terrible parents out there.  There are.  However, the majority of parents are good people with their children's best interests at heart.  They are motivated, don't have a "clock-off" time, don't require paid holidays, or paid anything, are patient and loving.  When they present in your surgery the first time, they may be bewildered, angry, upset, frightened and anxious.  This is a normal reaction when your child is ill.  Ask any oncologist.

4 comments:

  1. Anonymous19 July, 2012

    Great post Charlotte :) Interestingly, the sentence that stuck out for me most was:

    "It is well known that many eating disorder clinicians have had an eating disorder in the past. Try to remember that your patients are not you. They aren't you, so only treating them the way you felt was successful for you, is cruel."

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  2. My favourite "Making a patient accountable for their eating disorder and making them accountable for their recovery implies that the patient has chosen to not eat or to eat in a seriously detrimental way. I find it helps to regard an eating disorder as a compulsion, rather than a choice" although yes, I did smile a LOT at the bit about CBT

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