Patient Perception Of Provider-Initiated Treatment Termination

There is much debate among the eating disorder treatment provider community as to how best to handle a patient who is not progressing in their treatment program. Some providers are content with applying harm reduction techniques or meeting the client where they are. Other providers believe that continuing to see a patient who is not meeting the goals of their treatment program is harmful. For these providers, the common belief is that patients will assume that their eating disorder is ‘not that bad’, and that it’s ok to keep using their current level of symptoms. 

The Eating Disorder Voices Project decided it’s time to directly ask patients with eating disorders about how they perceive these events. And, the results overwhelmingly showed that provider-initiated treatment termination was almost always viewed as an extremely hurtful and harmful experience. In fact– only two respondents to the survey indicated that this experience impacted them in a positive way. And both of those individuals noted that the ‘positive’ outcome was a result of them seeking care outside of the traditional eating disorder treatment model. 

The full survey, including details on methodology, can be found here: Provider-Initiated Treatment Termination Survey Results

Several themes were pervasive among the responses. Some of the most commonly endorsed outcomes were:
– Worsening eating disorder symptoms
– Negative impact on self-worth
– Increased self-harm or suicidal ideation (or attempts)
– Loss of trust in treatment providers, or in the ability of treatment programs to meet their needs
– Fear of future abandonment by treatment professionals
– Intent to lie to treatment providers in the future about how much they’re struggling, so as not to be ejected from treatment again
– Belief that their eating disorder was ‘too severe’ for treatment programs to handle, or that they are a ‘lost cause’
– “Confirmation” of core beliefs that not being ‘perfect’ will result in abandonment.  
– Belief that they are not ‘worth saving’

Other common concerns about treatment protocols were:
– Attempts at self-advocacy (example: requests for disability accommodations, reporting sensory overload) were viewed as ‘non-compliance’ and met with punitive measures
– When logistical barriers prevented a patient from attending a higher level of care  (example: single parent unable to take time off work or find childcare for weeks on end), patients were discharged from receiving any care. 
– Patients felt as though they were being punished for not being ‘recovered’, but then were confused as to why their treatment program discharged them. (If a treatment program can’t help someone who is struggling, who will?)
– Several patients were discharged for being ‘too complex’, but were then left with no alternative options for care 

Obviously, many factors play into the decision of whether or not to discharge a patient from treatment. However, we hope that the input of people with lived experience on this topic can help to shape future conversations on this topic.