As I reflect on Eating Disorders Awareness Week 2020 (EDAW2020), I realize that there is so much education that needs to be disseminated to improve the care provided to people living with eating disorders.
Knowledge is POWER, when we know more, we do better.
About Eating Disorders
Eating disorders (ED) are complex mental illnesses with physical manifestations. Approximately 1 million Canadians, plus their families are affected by an eating disorder at any given time per year and many more remain undiagnosed. Very few people with eating disorders recover quickly and maintain lifelong recovery, typically illness duration is 2-7 years. Eating disorders are oftentimes accompanied with thoughts of suicide or suicide attempts.
In fact, suicide is the most common cause of death among individuals with EDs not the ED itself. While EDs have the highest mortality rate of all psychiatric disorders, successful approaches to ED treatment include a multidisciplinary approach that focuses on psychological, physical, and social wellbeing.
Primary care providers (PCPs) are generally the first and most consistent point of contact for patients living with eating disorders. PCPs fulfill two key roles in the treatment of EDs.
1. To develop a radar for identifying people who might need more assistance
· Early identification, timely and thorough medical follow-up that helps eliminate potential chronicity of these disorders
2. Closely monitor the physical and mental health of their patients and advocating on their behalf.
The relationships established between PCPs, patients and their families are ones that will span over several years. Research has shown that the strength of this relationship is correlated to positive patient outcomes and recovery achievement.
The reality is that most patients never tell their PCP about their eating disorder or are never screened for eating disorders.
WHY?, when this is such an important relationship for support and treatment.
There are many barriers to effective care on both the PCPs side and the patients.
Let’s look at the three most common barriers.
1. Lack of knowledge
Lack of knowledge is a two-fold problem, firstly most PCPs, including myself, do not receive enough education regarding EDs, nor are we aware of the screening tools available. Screening is the first step to making the diagnosis and it’s essential to be aware of patients with at risk behaviours.
Secondly, we lack knowledge regarding the red flags that may indicate risk behaviours. Patient’s with EDs aren’t approaching their PCPs saying, ‘I'm restricting or purging.’ They often deny these behaviours as they are providing some benefit. Instead, they'll present with negative signs and symptoms as a result of their ED but are in denial that these have anything to do with their ED.
Patients often present with the following symptoms:
amenorrhea or menstrual irregularity
loss of libido
depression and anxiety
Physical signs include calluses on knuckles, tooth decay, or enlarged salivary glands in patients who are purging.
Until recently I would never have considered an eating disorder when patient complained of any of the symptoms above or even been looking for these physical signs. I do now.
Stigma also has two aspects, the first is believing the MYTHs regarding EDs which is a knowledge piece, but these beliefs perpetuate stigma.
The most common myths about EDs are:
Eating disorders are a choice
Eating disorders are not that big of a deal, everyone has one
Anorexia is the only serious eating disorder
Strict rules about eating and fad diets aren’t the problem
If patients aren’t emaciated, they aren’t sick
Eating disorder behaviours only focus on food
Eating disorders only affect girls
Eating too much isn’t an eating disorder it’s a discipline issue
If patients with Anorexia gain weight, they will be fine
Purging only involves self induced vomiting
Anorexia is the leading cause of death in patients struggling with eating disorders
As providers if we believe any of the above, we fuel the stigma and discriminate making it harder for people to access help.
The second is weight stigma, this is a huge problem in healthcare. Despite our best intentions in our practice, unless you are ED sensitive, our traditional practices weight shame.
This occurs when we do the following:
Having a blind spot to weight – refusing to listen to patients concerns and deeming weight loss as the solution for all complaints. This mentality is perpetuating healthcare cuts, refusing heavier people access to much needed treatment/surgical procedures due to their weight.
Using fat shaming terminology – the term overweight implies that larger bodies are wrong while obese pathologizes the ratio of weight to height, even though it’s not always a great indicator of health. Using terms like fat, larger, heavier, and plus sized are more body positive.
We praise and celebrate behaviors that would be considered red flags in “thin people”—obsessively counting calories, going overboard at the gym, developing a preoccupation with the scale or with food are seen as positive weight management behaviors in plus-size people.
We use BMI as an indicator for health and it was never intended to be used for that.
We have all been in a position where we have done any of the following without realizing how it could impact someone struggling with an ED. Any of these responses could significantly trigger them and impact the therapeutic relationship.
3. Lack of Access
Finally, lack of resources and support can deter PCPs from asking patients about their relationship with food because they're afraid of opening Pandora's box. They don't feel comfortable pursuing it within the time constraints of an office visit or they don’t know the best way to get the patient the help that they need.
On the other hand, making a diagnosis can be difficult as not every patient meets the diagnostic criteria. This doesn’t mean they don’t have an eating disorder, and we must stop focusing on these criteria because it creates another barrier to accessing care.
Once a diagnosis is made, we want to urgently get treatment started! Check a box off our to do list. We want to get our patient well and stop their suffering.
Unfortunately, most patients aren’t ready. This can cause a provider to get frustrated and become judgemental which can deteriorate the therapeutic relationship.
We need to learn more and that’s already happening. More information is being disseminated regarding EDs for providers including practice guidelines. Provinces are also seeing the urgency and funding resources and supports.
As providers we need to embrace the Health At Every Size (HAES) approach which simply includes:
Acknowledging that obesity is complex and it’s not a discipline problem
Recognizing our biases and attempting to break them
Focusing on healthy behaviours NOT weight loss
PROMOTING BODY ACCEPTANCE
We also need to assess patient’s readiness to change and without judgement accept where they are at in their journey with compassion. Pushing patients into unwanted treatment hurts the therapeutic relationship and wastes valuable resources. In very few cases is treatment urgent.
The therapeutic relationship needs to be respectful, free of judgement, compassionate and have strict boundaries regarding when medical intervention is required and life saving measures will supersede readiness to change. Above all open, honest communication is essential.
We aren’t expected to provide care alone. We need a team to support us, the patient and the family as this journey can be long and unpredictable. Dieticians, counselors, social workers, Physician’s/NPs specializing in EDs, psychiatrists and community resources can be huge assets, don’t be afraid, reach out.
I hope this blog taught you something new, maybe changed your perspective on EDs or at the very least made you think.
Till next time.