Removing the Stigma from Eating Disorders

When someone is diagnosed with cancer or another commonly known disease, the natural reaction is sympathy. Sadly, that same reaction doesn’t always result in the case of eating disorders. There is often a stigma surrounding them – a tendency to not view them as “real” sicknesses or diseases – and often times, to not want to talk about it.

Nurses and other care team members on the P5 unit at American Family Children’s Hospital are working hard to make sure that stigma does not exist.

Windy Smith, MSN, RN, nurse manager of P5, explains how her team is caring for patients with these very real disorders that present very real physical issues.

“We have a specific list of criteria for an eating disorder admission, which includes symptoms such as vital sign instability, rapid weight loss (in a two-week period of time), heart rate below 50, body temperature below 96 degrees, heart electrical disturbances, electrolyte imbalance and actively refusing food,” Smith explains. “When we see a patient who’s presenting with these symptoms, they are admitted with the goal of getting them medically stabilized. Having an eating disorder is an extremely dire matter and disease. It can affect vital organs and often lead to death, if untreated.”

Smith’s team on P5 developed a specific protocol for eating disorder patients, which has resulted in getting each patient medically stabilized before they are transitioned to their next phase of treatment, which includes cognitive behavioral therapy at an eating disorder center.

“Food is a huge stressor for this population,” continues Smith. “We work with each patient and feed them slowly to increase calories, because their body isn’t used to having those nutrients. If calorie consumption happens too quickly, it can cause serious electrolyte imbalances which can be fatal.”

Smith states that the medical stabilization process can take approximately 2-3 weeks. During that time, food is viewed as the patient’s “medicine,” which is incredibly regimented during their stay.

“These patients have an extreme aversion to eating – it’s very stressful – and the goal is to medically stabilize them to transition to their next phase of care,” Smith says. “Every aspect of their care plan while they are here needs to be well orchestrated among the primary medical team, psychiatry, nutrition, culinary services, the nurse and others on the care team.”

Because of the extreme stress and anxiety associated with food for these patients, they are often assigned a patient safety attendant (sitter) to make sure they don’t exercise, purge or hide food.

“We also started using video monitoring for this patient population,” Smith explains. “A nursing assistant still sits with them during meals, which is a high-anxiety time, and video monitoring is used during other times to ensure that our patients are safe. Another benefit of video monitoring is that it allows nursing assistants to tend to other duties that require their hands-on expertise.”

Smith explains that the RN serves as the point person for the patient and family and coordinates all of the elements of care, to ensure seamless delivery of care to the patient and family. The RN also coordinates a lot of the “behind the scenes” interactions with the multi-disciplinary team, to establish a consistent and standard approach to care.

“The nurse is the hub of care for these patients and needs to create a therapeutic relationship with the patient and the family to help them through this extremely challenging time,” says Smith.

Stephanie Miller, BSN, RN, CPN, practices on P5 and recently cared for one particular eating disorder patient, Anna Gille, who was admitted twice for anorexia, a disease that Smith says has the highest mortality rate of any mental health diagnosis. In addition, Smith notes that there is also a high risk of relapse with any stressful time in the patient’s life – therefore, ongoing therapy including individual, family, and nutritional therapy is essential to success.

“When Anna was initially admitted, her mother was so appreciative that we treated her anorexia as a real disease,” Miller said. “Their family wasn’t getting that response at other places. We didn’t let the stigma of anorexia and mental health be part of her care.”

Miller says that when she works with patients fighting eating disorders, she often tries to find ways to connect with them, to look beyond the disease and get to know the person.

“It wasn’t long after meeting Anna that I saw past the meals being refused and the high anxiety during nutrition discussions to discover a kind-hearted girl,” Miller said. “As we built trust in each other and created a therapeutic bond, Anna was able to talk to me about her passions and feelings. Some days were harder than others, but with the trusting relationship Anna and I established, we were able to find ways to make the days less difficult.”

Miller explains that as meals and calories increase in the patient’s plan of care, the anxiety and distress do, as well.

“Eating disorders can make it difficult for patients to understand that the medical team is trying to help them and that nutrition is what their bodies need,” Miller continued. “During this time, a trusting relationship is especially important. As tube feedings would run, Anna would paint my nails or we would play games to make the time pass. The protocol is very specific and regimented, but when it was allowed, we were able to find things to do that Anna enjoyed – such as getting her hair done, playing the piano, or going to see the Pet Pals therapy dogs.”

“It was wonderful to learn what a fighter Anna is and to watch her progress while taking care of her,” Miller said.

Anna’s mom, Jennifer, shared the gratitude that she, Anna and their entire family felt about the care Anna received.

“We cannot say enough about the phenomenal care our daughter and family received at American Family Children’s Hospital,” Jennifer Gille said. “The entire care team collaboratively developed an individualized plan to most effectively help our daughter. They listened, they cared, they changed the plan when it was not working and they kept strategizing a plan to be effective. We always felt the support and the concern for each one of us and truly believe that our daughter is still with us today because of the knowledgeable, dedicated team for which we are forever grateful.”