Dropping Patients Who Aren’t Improving is Very Risky

Many clinicians in the eating disorder field feel comfortable discharging patients who aren’t getting better. If a patient isn’t making changes with food, is at a low weight and/or has abnormal lab values and isn’t making steady progress, doctors, therapists and nutritionists alike feel justified in saying they can’t help anymore. The only option is a higher level of care.

I have written about this standard protocol of treatment many times in this blog because I continue to be shocked that providers who are supposed to help struggling patients can so easily drop them.

The explanation for these decisions is twofold. First, if a patient needs more care, allowing them to continue substandard care will lead to a dangerous outcome. Second, and more to the point, clinicians don’t want the liability of treating a patient who might get very sick on their watch.

In the end, the decision to drop a patient always benefits the provider, never the patient.

A treatment team is obligated to try to help a patient in the process of recovery. Therapy can shift to focus on all the reasons a patient is scared to get more help or to make progress with food. The team can consider support in other ways that represent a compromise between higher level of care and continuation of the current plan. Medical interventions can attempt to manage the effects of the eating disorder with electrolyte or vitamin supplementation.

Dropping a patient is not the only option.

The very harsh decision to end treatment with a patient makes them feel like the eating disorder is their fault and that recovery is just a matter of willpower, very much not the reality. The clinical misjudgment reinforces the patient’s belief that they are the bad one and that the idea that they are damaged must be true. Why else would the team drop them?

In fact, a standard type of therapy used for eating disorder and substance abuse treatment is called motivational change. The first step in getting help is called the precontemplation phase. In this step, the patient is considering real change and needs the space to be able to sort through their own internal obstacles in order to move forward.

Why can’t eating disorder clinicians provide these steps? Why can’t the same clinicians discuss the medical risks at length and still continue to provide support? Why drop someone trying to figure out how to get better?

Recovery from an eating disorder is hard work. The physical steps of eating more food, tolerating fullness and digestion and seeing one’s body change are very hard. The psychological steps of feeling emotions more intensely, exposure to others without the numbing of the eating disorder and losing the ways an eating disorder feels like a protector are hard as well.

A knowledgeable clinician understands these struggles and can provide meaningful care and attention to help them move forward in recovery. Isn’t it an obligation for all of us to provide this care?

Why Eating Disorder Recovery Must Focus on Being a Person, not an Illness

Often people with mental illness describe that they feel invisible. They experience being treated as an illness and almost as a deficient human rather than a real one.

Interestingly, newer lay terminology refers to “my anxiety” or “my depression” as a way to exert ownership over symptoms while separating and learning about one’s identity. The downside of the shift in language is to confuse ownership of symptoms as a core part of oneself, not a manifestation of mental illness or even just the human experience. People tend to conflate “my” psychiatric symptom with who they are.

Those with eating disorders experience even more powerful forces to lose their identity completely. In a world where food and weight already replace other forms of identity, there is little room to find oneself outside one’s body to start off.

In addition, eating disorders often substitute for identity as a form of both achievement and coping skills. It’s hard to replace such a powerful way to exist in the world despite the personal cost of having an eating disorder.

Last, treatment providers talk a lot about people with eating disorders as if they are the illness themselves. They indicate that any opinion or belief the providers disagrees with is an “eating disorder thought.” The effect of disregarding a person’s thoughts and feelings leaves no room for someone to be themselves or learn about themselves. This interaction only confirms the eating disorder as one’s identity.

I frequently note that the people who are the sickest and who have been struggling the longest despite adequate care have had no space to be themselves. The lack of room to freely and safely express one’s thoughts leads to an imperative to stay hidden and protected by the eating disorder. The symptoms provide a shield against their own feelings and others’ demands—a modicum of safety in a very threatening world.

Despite best efforts to monitor medical symptoms and lab results, to offer higher level of care or to show an overarching interest in weight restoration, standard eating disorder treatment often falls flat. Without any desire to listen to the person and what she has to say, there is very little chance of getting well.

People with eating disorders are still people. What they think and feel matters greatly. In order to go through the struggle to get well, they need to know that people around them see them and value them as individuals. There is no point in getting better to just be a shadow of a human being. The goal is to become truly oneself in the process.

Why is there a Problem Misdiagnosing Eating Disorders

The concept of eating disorders has become very present in our daily culture. As opposed to a few decades ago when these illnesses were overlooked and often misdiagnosed, doctors, family and friends are now very aware of these disorders and quick to jump to their own personal assumptions or conclusions, right or wrong.

In the past, I often had to explore the possibility of an overlooked eating disorder diagnosis.

These days it is much more common for eating disorders to be seen as the primary issue for people with any eating symptoms at all, despite evidence of other medical or psychiatric issues which may be the primary illness that needs to be treated.

The reasons for this about face are many. Eating disorders are a frequent topic in regular conversation and social media, which increases awareness but also dilutes the true definition of these illnesses. The rapid growth of the eating disorder treatment industry spreads education but also falsehoods to clinicians and families about these disorders and appropriate treatment. Also the decades of experience knowing about eating disorders makes clinicians and others more likely to be more aware but also makes it easier to jump to conclusions.

The ignorance and lack of access to care have reversed almost completely in recent decades and led to a transformation in how to approach eating disorders. Any sign of disordered eating has become a reason to diagnose and often send people to residential treatment without considering any other options. I see more people with other primary issues who have undergone intensive treatment before even having a thorough work up for all possible causes of their symptoms.

First and foremost, people with suspected eating disorders need to see a primary care doctor and psychiatrist to consider all the possibilities and ensure each person receives adequate and individualized care.

Eating disorders can be a misdiagnosis of many psychiatric conditions including depression, psychosis, bipolar disorder and OCD and many others as the primary issues.

Endocrine problems, inflammatory disorders, a vast number of gastrointestinal problems and neurological conditions can masquerade as eating disorders as well.

No program focused on eating disorder treatment will work through these medical options to be sure they aren’t overlooking causes for the condition. These programs have a set plan for treatment which does not include a search for other diagnoses. Many people cycle in and out of treatment and don’t get better but also don’t have any doctor looking into why they aren’t getting better. The assumption is always that the person isn’t “trying hard enough.”

I strongly advise anyone with a new diagnosis of an eating disorder to seek out a thorough medical and psychiatric assessment to rule out any underlying causes. Doing so can avoid the pain of inappropriate care and speed up the process to get well.