A personal perspective

ON BEING PROVED WRONG

PAEDIATRICAN SUSAN SAWYER RECOUNTS A WEEK IN THE LIFE OF AN EATING DISORDERS CLINIC AND OF A RELUCTANT SCHOOLGIRL SENT FOR TREATMENT THERE

It is Tuesday afternoon. I call out the name of the teenage girl whom I'd agreed to see outside my usual times. The clinic waiting list is weeks long but she needed urgent assessment. She is all too easily identifiable in the waiting room. I feel relieved, as she hadn't wanted to come. She walks slowly into my consulting room after demanding her mother stay put outside. She confirms she doesn't want to be here, telling me she doesn't have any health problems, that she's only here because her mother made her come. She tells me she's doing much better now, eating really well. She doesn't believe she's underweight and hopes to lose more. I choose not to respond yet. I know that logical explanations will not get me far.

She has fine facial features, dominated by dark, luminous eyes. They seem sad and confused, or are they angry eyes? Her pale skin looks tired. She pulls obsessively at her hair, which is dull and lank. Despite my experience, I am astounded at her physical appearance and try not to stare. She is grossly emaciated, severely physically malnourished. This girl is so obviously unwell. How have her parents explained her weight loss? What attempts have they made to get help? What was her GP thinking? What was the school's response?

Through an interpreter, her mother confirms that she has lost at least 10 kilograms in the past three months, although neither mother nor daughter is certain of her earlier weight. They agree on 42 kilograms. Her current weight is way off the growth charts by which we define normality. My physical examination confirms first impressions: 31 kilograms-a dangerously low weight.

It is a warm day but she wears many layers of clothing. She objects to my request to remove them, but I quietly insist. Ever so slowly, the layers get removed. Again, I am shocked by how wasted she is when fully exposed in her underwear. Her pulse rate is dramatically slow at forty beats per minute and her blood pressure can't be recorded by the blood pressure cuff, measurable only by palpation.

My examination reveals no physical explanation for her dramatic weight loss: no evidence of thyroid disease, no malignant masses, no features of organ failure. I will perform a few tests but the diagnosis seems fairly straightforward: another young girl with anorexia nervosa.

I talk quietly with mother and daughter about why I think the girl has anorexia nervosa and needs to be admitted to hospital. Through the interpreter, this takes longer than usual, but I had put the time aside. The severity of the girl's condition makes the focus on the physical the only option for today. There will be time ahead of us to explore what has led her to this point.

The mother sits passively, without questioning. It is the daughter who becomes distressed and tells me that she couldn't possibly be admitted to hospital. She reiterates that she is not sick enough, that she is eating better than before, and she also tells me that she couldn't cope with being separated from her family. She pleads with me to allow her to stay home. I explore her expectations and any previous experience of hospitalisation, but her distress doesn't seem focused on any particulars. I reassure her and her mother that we manage many young people with anorexia at the Centre for Adolescent Health and that while most young people don't want to come to hospital they generally don't find the adolescent ward at the Royal Children's Hospital so bad. I say that hospitalisation might last about two weeks.

The girl's distress does not settle, it gets worse. The interpreter tells me that the mother has just reassured her daughter that she won't have to go to hospital if she doesn't want to. He steals me a quick glance of concern. He is clearly worried. I nod to him, sharing his concern. Wordlessly, though, I try to reassure him that we will work it out. The emotional context of anorexia nervosa is not new territory for me.

Hearing of the mother's ambivalence about hospitalisation, I refocus my attention and explore her concerns. She cannot understand why her daughter refuses to eat or what else might be wrong. It is clear that neither she nor her daughter was expecting what I have told them. I emphasise to them the risk of sudden death from cardiac arrhythmia when weight loss is as severe as this. I try not to use this information threateningly but feel it needs to be said. Perhaps I am just trying to make myself feel less of an ogre. Railroading the hospital admission is one option and I feel more comfortable that her mother could now be persuaded.

But is it truly necessary today? I consider what I might be prepared to compromise on. The risk of sudden death is real if weight loss continues, but she has had severe weight loss for the past three months. Another day or two should be safe.

As an alternative, I suggest that I will agree to her going home today if she agrees to seeing me in three days' time. On Friday, if she can demonstrate she has improved, it would be safe to stay home until she is seen in clinic the following week. However, if her physical assessment were unchanged, and certainly if it were any worse, she would then need to be admitted. I choose not to inform either of them that should her clinical state be worse on review and the mother refuses to allow hospital admission, there are legal options available to me that would ensure her daughter obtained the required medical care. I have no doubt I would invoke this if the girl were to deteriorate further.

I feel relieved when the compromise is agreed to. I provide clear instructions about a meal plan between now and Friday. Three meals a day: normal meals like the rest of the family, no 'low fat' products. Three snacks a day: high-energy snacks, not the piece of apple or air-filled rice crackers she has been eating. Because she is so unwell, there is to be no school and she must stay within the house. I feel like I am demanding the impossible, as I know how few girls with such severely disordered eating can achieve this. I tell her that I very much hope she can prove me wrong, but in my heart of hearts I sense I am simply buying time.

I call her GP, who sounds greatly relieved. I quietly explore with him why he hadn't sought specialist help earlier, and he tells me that she had refused to allow him to examine her, let alone weigh her. Yet his 'eyeball' assessment had been sufficient for him to lose sleep over her. Perhaps the real reason lay in his explanation that he hadn't known where to get help.

I make detailed notes in her hospital file about what has led me to the diagnosis of an eating disorder. I describe the various features of anorexia nervosa. I record the abnormal physical features, her altered body image, the features of depression and anxiety. I ponder an apparent paradox: that while her physical and mental health is severely disturbed, her history of disturbed eating is very short. I consider the unknowns: the features within herself, her family, and her social circles (friends, school) that might have led to this sudden descent into disordered eating.

Do we have a case of depression here, and is the disordered eating a symptom of that? Is it true anorexia nervosa? What might this difference be? Given that the treatment is the same, does it matter?

As I make my notes, I feel my own anxiety rise about allowing her to go home. What if she dies from an acute cardiac arrhythmia? Have I allowed my medical judgement to be compromised? Would my colleagues have made the same decision? I have to remind myself why I have allowed her to go home.

First thing the next day, I check her blood tests. Normal. I race off to our team meeting, grabbing a coffee and a muffin on the way. The euphemistically named Healthy Eating Clinic meets weekly, generally over food. Our team consists of multidisciplinary staff at the Centre for Adolescent Health and the Royal Children's Hospital: physicians, dieticians, mental health professionals, nurses, and others. We generally have a few students on placement and I remind them about the confidentiality of our discussions of patients. We provide updates about the ups and downs of the long-term patients, our 'frequent flyers'. 'Remember Jane? She's doing really well. Wants to do psychology!' We grin. Nutrition and psychology seem standard career choices for young women with anorexia. 'Margaret will need admitting again soon.' We sigh about the apparent lack of progress, the lack of treatment alternatives. Primarily, however, our team meeting is where we build a shared understanding about how we work therapeutically with patients and their families. It is where secondary consultation is provided, and where we support each other in managing this complex work. I know my junior staff understand that I need their support as much as they need mine.

Six years ago, I had no experience of eating disorders. In retrospect it seems a pretty bold move to have started the Healthy Eating Clinic. Our idea back then was that we wanted to 'provide a clinical focus for teenagers with emerging eating disorders'. The impact of anorexia on individuals and families is immense. Mortality is about 5-10 per cent of all cases presenting in adolescence, varying with the duration of the disorder and the length of follow-up treatment. It is not uncommon that, once established, anorexia nervosa lasts for five to ten years. And while over half of all adolescents with anorexia nervosa are predicted to recover, a significant proportion continue to suffer from relapses or maintain some milder features of anorexia or bulimia.

Given this impact, and the difficulty for young people in gaining access to services, our goal was to focus on early intervention that might prevent the development of more severe symptoms.

It is ironic that the lack of multidisciplinary facilities for adolescents with eating disorders in Victoria has meant we are perceived as running a specialist service. We deal increasingly with severely disturbed people presenting at increasingly young ages. One explanation is that eating disorders are becoming more common in our community. It is estimated that 0.1-0.5 per cent of adolescent females have anorexia nervosa, but that up to 5 per cent of young women have some features of disordered eating. Another explanation is that health professionals have become better at identifying the signs of eating disorders in young people and are referring them to us earlier. However, the clandestine aspects of a disorder, whether it is anorexia or bulimia, continue to make early identification difficult. The more likely explanation for our increasing numbers is our growing reputation. At the end of our weekly meeting spent discussing a group of very disturbed patients, I wonder how well this reputation is deserved.

I mention yesterday's new outpatient. One of my colleagues asks what it would take for her not to be admitted. I explain that my decision will be based primarily on her pulse rate. 'But what increase would you be satisfied with?' someone else pushes. I'd be happy with a four-beat-per-minute increase in three days. To be honest, I'd be satisfied with any increase. The challenge is whether it could be maintained. No-one disagrees. Like me, they know she'll be admitted on Friday. I invite them to criticise me for allowing her to go home yesterday. They agree my decision was reasonable-but brave. I feel reassured.

I review my new patient as planned on Friday. Initially, I saw her alone again, and she told me that she was eating well. But they all say that. As anticipated, her weight and blood pressure were unchanged over the three days. However, I was surprised that her pulse rate was significantly better. Fifty-two beats per minute! Her mother confirmed that she was eating well, with no evidence of bingeing or purging. I found it hard to credit such a change, but there was little doubt about the improvement. I cancelled the bed that I'd ended up booking for that day.

I arrange to review her the following Tuesday. Crunch time. Occasionally patients with eating disorders can improve their eating for a short period when faced with significant consequences, but it is less common for them to sustain this improvement.

She walks into the consulting room with her mother, smiles at me shyly, and tells me how much better she feels. Her resting pulse rate is sixty beats per minute and she has gained 1.2 kilograms.

By the following week she has gained another kilogram and grins at me openly. Her mother is almost chirpy today. It is school holidays but the girl is starting to spend time with her friends. She is convinced that she is on the path to recovery. I am the one needing reassurance. This pattern feels too good to be true. This is not usual for anorexia nervosa, although we've all seen it. She more openly discusses school concerns and her belief that it was these issues that led to depression last year and that, somehow, she lost her appetite with it. How easy it seems to lose one's way! We talk of her anxiety about school starting again next week. I encourage her simply to take one step at a time.

I had been absolutely certain that she would be admitted to hospital within the week. Given how unwell she was at presentation, I was sure we'd be here for the long haul. It feels good to be proved wrong. With anorexia, it would be nice if it happened more often.

This article was first published in Meanjin, Volume 61, Number 4, 2002.

Last Updated 23-Oct-2009. Authorised by: Stephanie Jones. Enquiries: Michelle Roberton.