Obesity and Eating Disorders – A tale of two reports Part 2

In recent months, the Canadian Institute for Health Information (CIHI) has released two very interesting reports.  The first report is about the growth in bariatric surgery in Canada.  I talked about this in my last blog.  The second report on the use of hospital care for the treatment of eating disorders will be my focus today.  Once again, this report is easy to misinterpret, without some context or understanding of the system.  Taken at face value, it would be logical to assume that the need for obesity treatment is ten times greater than the need for eating disorder treatment and that in fact eating disorders are truly rare and rarely lead to the use of urgent care options in our system, such as the emergency department.  This is absolutely wrong.  To understand why, we need to take a closer look at the data.

According to CIHI, the total number of admissions to hospital (one person could have multiple admissions and each would count as a separate admission) was  just over 1,500 admissions to hospital for the treatment of an eating disorder with an average stay of just over a month in 2012-2013.  This represents a small increase from 2006-2007, when there were 1,300 admissions for the same reason across Canada.  The total number of admissions across Canada and across all ages seems to confirm that it is a rare disorder.  In a country of over 33 million people, this would suggest that less than 0.005% of the population had an eating disorder that required an inpatient treatment. 

However, there is a flaw in this interpretation. In most of the country, patients, even those with severe and life-threatening eating disorders, are only admitted to “eating disorder beds” that are few and far between.  They are not admitted anywhere else.  It is not unusual for someone to die because of the delay in access to treatment, including medical treatment.  This means that Canadians with eating disorders who have life threatening medical complications are not admitted anywhere, not even medical units for treatment.  They are expected to wait as an outpatient until an “eating disorder bed” opens up.  This can take months.  So what the CIHI data reflects is not the numbers of Canadians requiring admission to hospitals across Canada, but rather the number of spaces the various provincial governments and/or health care systems have allowed Canadians with eating disorders to access for any reason. 

What the data in fact suggests is that there are about 20-30 beds at most per province for children, adolescents and adults of all ages suffering from eating disorders.  There is less that one bed for every 100,000 Canadians (in Ontario, this means that there are 20 times fewer beds available for patients with eating disorders)) or one bed for every 2,000 Canadians suffering from anorexia nervosa.  Even if only 5% of people with anorexia nervosa needed inpatient treatment, it means that for every bed available, there are about 100 people who need access to an inpatient stay.  What the CIHI data is actually telling us is that patients with eating disorders are mind-bogglingly underserved by the health care system.

When there are not enough inpatient treatment options for patients who require inpatient treatment, typically, there is an increased use of emergency services.  This does not appear to be the case with patients with eating disorders and this would seem to belie my argument about inpatient beds.  After all there were less than 1,000 emergency room visits across the whole country.  But the data is only good as its source.  The problem with the source is that in the emergency departments, the diagnosis of an eating disorder rarely gets listed.  If it’s not listed, it’s not counted. 

Let me give you an example.  One of the women that I work with has been to the emergency department 40 times in the last year and a half.  She went back and looked at her copy of the visit notes.  Not once did her diagnosis of anorexia nervosa make it onto the report even though all her medical issues, including a life-threatening medical issue were a direct result of her eating disorder diagnosis.  In a recent visit she had to the emergency department, she made a point of asking the physician to make sure he included her diagnosis of anorexia nervosa and he refused.  He saw no need.  She had to argue and insist before he complied. 

There is also a second problem with the emergency room visits data.  Most people with eating disorders avoid the emergency department, even when they have life threatening conditions.  This is because, as documented in the recent Federal Status of Women Committee report, they rarely receive the appropriate assessment and treatment, even for their medical concerns.  In fact they typically encounter dismissive, critical and disrespectful treatment, as do their family members.  It is not unusual, to encounter situations, where even in light of concerning medical complaints, no examination or relevant tests are performed and people with eating disorders leave no better off medically, but worse of psychologically.  Nobody benefits from humiliation, and this is particularly true for people in a fragile medical and psychological condition.  I cannot, but conclude that the CIHI data tells us very little about emergency use by patients with eating disorders.

There is one final glaring problem with this report.  There is no data available from more than 40% of the country and even the data that is available is somewhat patchy.  This is extremely concerning.  When considered with the fact the data that does exist is unreliable and taken out of context, this report is very confusing and difficult to interpret.  What it appears to say at face value is glaringly misleading.  What it is truly telling us is that not only do we need more appropriate psychiatric acute care services, but we also need better and more complete data collection and a more sophisticated data analysis.

What gets measured gets done.  It’s not a surprise that eating disorders services are so rare. We do not bother to measure the human cost of not treating eating disorders and this allows us to look away and leave this huge gap in our system unaddressed.