The labour-intensive job of treating patients with eating disorders
Mar 02, 2015, By: Laura Eggertson
Tracy Bourdages knew she was finally getting through to Barbara*, a 15-year-old patient with anorexia, the day the young woman turned to her and said, “You know, I have so much pressure in my life.”
It was the first time Barbara had been able to tell someone that she felt she lacked control over her life. The pressure to be a high achiever is a common trait among individuals who have been diagnosed with eating disorders.
For weeks, the young woman, who was a patient at the Garron Centre for Child and Adolescent Mental Health at the IWK Health Centre in Halifax had been purging — sometimes into the hospital’s radiator vents, sometimes into her socks — and lashing out at staff when they tried to get her to eat. She mixed blueberry yogurt, cheese and vegetables together into her juice, to make it taste bad to punish herself for “cheating” on her eating disorder. Beneath her blankets, Barbara did stealthy exercises, burning calories.
The Garron Centre is a 14-bed unit that provides acute inpatient care for children and adolescents with mental health and addiction needs. The care team includes nurses, social workers, psychologists, psychiatrists, teachers, occupational and recreational therapists, and transition support workers. Treatment for eating disorders follows the Maudsley approach, which focuses on family involvement.
Bourdages and her colleague Jessica Wournell, the only currently certified eating disorder registered nurses in the country, spent most of their 12-hour shifts working with Barbara and her family. The treatment goal was to give Barbara’s parents the necessary skills to manage her eating disorder–related behavioural difficulties and to train them to teach Barbara how to eat normally again. Although outpatient treatment for eating disorder patients is the gold standard, hospitalization is at times necessary for refeeding until the patient is stable enough to be followed in their home community.
Treating eating disorders requires one-on-one attention and an ability to think outside the box. The stakes are high: research suggests that eating disorders have the highest mortality rate of all mental illnesses. The medical complications arising from the malnutrition that accompanies eating disorders can be severe and sometimes irreversible. But treatment is not a one-size-fits-all process, in the same way that there is no single reason patients develop eating disorders.
Bourdages and Wournell developed strategies to prevent Barbara from employing her accustomed tactics for purging and losing weight. They removed her blankets when she wasn’t sleeping and ensured she couldn’t mix her foods together by handing her one item of food at a time while she ate.
To accustom Barbara to normal eating patterns, Bourdages and Wournell prepared food with her, ate meals and snacks with her every two to three hours and stayed with her for 30 minutes after each meal. There were periods of time when Barbara required 24-hour monitoring. The nurses got to know her and understand the negative feelings she had about her body and food.
When Barbara finally acknowledged that she was trying to cope with pressure by controlling her food intake, Bourdages knew they had reached a turning point. “That’s it — she’s starting to talk,” she remembers thinking. “We had such a struggle just trying to build a relationship with her, and that was the first time I could tell that we were getting somewhere.”
Part of the job of treating an eating disorder is providing emotional support for patients, whether they are making progress or backsliding. “Rapport building is essential,” says Wournell. “These patients are trusting us with really deep, intensely personal emotions.”
Eventually, after months of following through on a complex, consistent care plan that gave Barbara no opportunity to avoid eating, Bourdages, Wournell and their colleagues on the unit succeeded in helping her learn to eat normally, in front of her family, and be well enough to go home.
Barbara’s case was just one of the 30 to 40 admissions Bourdages and Wournell see each year. Their patients, who usually range in age from 12 to 18, are admitted for treatment of bulimia, anorexia or an eating disorder not otherwise specified. Many of them have been restricting their food intake to as little as 200-300 calories per day. Some have not eaten solid food for a year or more. Most are afraid to eat in public or to share family meals. They usually have a distorted sense of their weight and appearance.
In addition to their intensive one-on-one patient responsibilities, Bourdages and Wournell are resources for the other 50 nurses, both permanent and casual, on the unit. Many of their colleagues have less than two years of experience in the field. Having Bourdages and Wournell available to answer questions and help their fellow nurses results in better care plans and more consistent patient routines, says Kristi Kempton, RN, clinical manager for the acute inpatient unit at the Garron Centre.
It was Kempton that Bourdages and Wournell went to in 2012, after attending a conference on eating disorders, where they learned about certification through the International Association of Eating Disorders Professionals. They asked Kempton if they could have dedicated time to update the Garron Centre’s guidelines and protocols for treating patients with eating disorders. They also asked her to support them as they worked toward certification. The process involves 2,000 direct patient care hours, five days of coursework at an IAEDP conference, submission of a case study, preparation of a reference guide for a textbook, three letters of recommendation and an exam.
Kempton agreed and arranged for the two to work together one day every two weeks to revise guidelines and policies, and then to work on opposite shifts the rest of the time, so their colleagues always had one of them to come to as a resource. It took Bourdages and Wournell almost two years to get their certification.
While they studied, they developed updated protocols, meal support and kitchen guidelines, and fact sheets that covered topics including what to say to patients concerning eating and food. “The feedback we get from staff is very good,” says Kempton. That’s why the Garron Centre has extended the eating disorder resource nurse roles, and Kempton hopes the positions will become permanent when they are reassessed this spring.
There is a lack of understanding among the general public about the complexity of eating disorders, says Kempton, and a feeling that health-care professionals should just “make the patients eat.” The need to educate patients, their families and the public about all aspects of eating disorders, including the tendency to recur and lengthy treatment horizons, is one of the challenges doctors, nurses and therapists continue to face, she says.
Another challenge for nurses, in particular, is maintaining a therapeutic relationship without crossing any professional boundaries with patients they work so closely with, often over a period of months. It requires advocating for patients with their families, and for helping families re-establish normal routines. “It’s very intensive work, it’s complex, and it demands a lot from nurses,” Kempton says.
“It takes a special person,” Wournell agrees. “You have to be a teacher, a mentor and a therapist. But the rewards are great...when you see your patient voluntarily eat a normal meal for the first time, after months of treatment, you know it’s all been worth it.”
*Name has been changed
Language that helps (or hinders) recovery
From a fact sheet Wournell and Bourdages developed for their colleagues
What to say to patients:
- You are thinking so much more clearly
- It’s good to see your sense of humour
- Your concentration has really improved
- Your personality is really coming through now that your physical health has improved a little
- You should be proud of yourself for the steps you are taking to get/stay healthy
- You can talk to me if you need to
- This illness has a long course, but there is hope
- Your health is improving
- Your parents will have to plan your meals for a while
What not to say to patients:
- You look better
- You look much healthier now
- Your weight is healthier
- You are looking more normal
- You’ll grow out of it
- I promise you won’t get fat
- I promise you won’t die
- Wow, you’ve lost/gained a lot of weight lately
- What you are feeling is completely normal for your age
- Why can’t you just eat something?
- You’ll probably end up back in the hospital again
- Your weight is good this week
- You don’t need to come to my office anymore; you are fine
- You can choose what you want to eat
Laura Eggertson is a freelance journalist in Ottawa, Ont.