Pay Attention to the ‘Small’ Details in the Patient’s Chart
Throughout levels of care, I have had many phenomenal interactions with medical providers (nurses, psychiatrists, primary care physicians, hospitalists, patient care techs, & dietitians are all included) and a few, well…disappointing, interactions with others. Beyond the lack of medical training within the healthcare field for eating disorders, - shoutout to the passage of the Anna Westin Legacy Act and the continued provision of funding for the National Center of Excellence for Eating Disorders - I believe that most of the more unfortunate interactions were precipitated by a over extended medical system that inhibits the time providers have to thoroughly read patient charts, specifically medical and social histories. Because of this, details that are highly pertinent to care for patients with eating disorders (both physically and mentally) are being missed.
Note Blind Weight or Weights Left Out of Patient Accessible Charts
For many of us in eating disorder recovery, knowledge of weight and specifically the knowledge of changes in weight, can have a significant impact on mental health and motivation to recover. After being unaware of this information for any period of time, having a provider unintentionally disclose weight can be incredibly triggering and detrimental to the recovery process. Additionally, it is incredibly hard to predict how the internalized eating disorder will respond to the knowledge of weight gain or weight loss, both of which can actually be factors that drive someone with an eating disorder to continue to engage. This information can unintentionally be disclosed through comments made when taking weights, forgetting to ask a patient to take a blind weight, or providing weight specific information in patient accessible charts or after visit summaries.
The good: Work has been done with my primary care provider to discuss how weight impacted my own recovery and together it was identified that blind weights would be the best approach to the initial weight restoration process. With this, weights were also excluded from notes accessible through the online patient portal and removed from any after care summary received.
The bad: During an encounter with a provider unaware of my medical history, both my current weight and my weight history over the past six months was disclosed in an attempt to prove invalidity of any eating disorder diagnosis that had previously been given.
Pay attention to growth history
Reliance upon BMI or weight as the primary diagnostic criteria for an eating disorder leads to size bias and can be invalidating of the experience for those with an eating disorder in a larger body. Additionally, symptoms of refeeding syndrome can occur independent of BMI. Missing significant changes to weight or intake, as a result of becoming reliant on BMI as the specific measure of health and wellbeing, can be detrimental to patients with a history of an eating disorder. Instead, attention should be focused on significant changes to growth history and reported intake.
The good: After noting consistent changes to weight and intake over a limited period of time, inpatient hospitalization was recommended by my primary care provider to monitor for refeeding syndrome while beginning nutritional rehabilitation in a structured environment. When inpatient treatment was not determined to be ‘medically necessary’, regular labs were ordered to monitor levels of potassium, phosphorus, and magnesium in an outpatient setting to ensure medical stability.
The bad: Under the same circumstances during an inpatient hospitalization, next day discharge was recommended based solely on BMI.
Read diagnostic and treatment history
For patients with eating disorders, there may be the need for validation of being ‘sick enough’ to receive care. Having to justify symptoms or diagnosis only feeds internalized messaging from the eating disorder that the individual is not actually ‘sick enough’. Additionally, within eating disorders a competitiveness or hierarchy of diagnoses may be seen. As a result, changing a diagnosis or requiring justification for a diagnosis leads to the potential for continuation or worsening of symptoms in order to justify the significance of the eating disorder. If the history of the patient and their diagnosis is unknown, don’t argue the diagnosis.
The good: After weight restoration had begun, diagnoses were maintained based on behaviors and symptoms experienced, independent of BMI.
The bad: After meeting a provider for the first time, the history of the eating disorder diagnosis was questioned and the provider argued that the diagnosis was wrong based solely on BMI. Further justifying this statement by noting that while it may have been the correct diagnosis when in a smaller body, at this BMI, it was certainly incorrect.
Pay attention heart rate history
Bradycardia in patients who engage in over-exercise may be attributed to simply ‘being an athlete’. However, for patients with eating disorders, bradycardia does not necessarily equate to an athletic heart. When athletes maintain an adequate nutritional intake, both resting heart rate and heart rate during aerobic activity will decrease. However, in individuals with an eating disorder heart rate decreases may be due to the development of a starved heart. This will be represented by experiencing bradycardia at rest, but a fast heart rate with standing or walking. This is why it is particularly important for providers to monitor heart rate history and orthostatic vitals.
The good: Upon initial development of bradycardia in an outpatient setting, orthostatic vitals were completed and inpatient hospitalization was recommended for further monitoring of heart rate and completion of an echocardiogram to verify heart health. Once medical stability was confirmed, heart rate was continuously monitored in an outpatient setting through regular appointments to check vitals, consistent monitoring of orthostatic vitals, and use of mobile telemetry unit as heart rate shifts occurred.
The bad: During an inpatient hospitalization bradycardia was noted on telemetry, but attributed to the fact that I was regularly engaged in exercise. Because I was identified as a ‘runner’ the cause of my bradycardia was linked to having a well conditioned heart and discharge was recommended.
I am sharing my story and the aspects of care that have been good, bad, & everything in between with the hope that patients will feel more empowered to advocate for themselves and the belief that providers should all have a reference point to begin compassionately and effectively treating eating disorders.