Family care an anorexia option
Family therapy for anorexia boasts impressive successes, but it’s not for everyone. Health editor Adam Cresswell reports
IT took a while for Sydney mother Jan to realise something wasn’t quite right with her daughter Ashleigh, then aged 131/ 2. At that stage weighing 62 kilograms, Ashleigh was sensitive about her weight — which was perfectly healthy, but towards the upper end of the normal range. Ashleigh mentioned to Jan (not their real names) that she wanted to shed a bit of the ‘‘ puppy fat’’ that was making her unhappy.
For the next couple of months, until about October 2006, all seemed to be going well. Ashleigh continued to eat well, was sporty, healthy and — so it seemed — happy. Her mother noticed a bit of weight had come off, but nothing to cause concern. Slowly, that changed. ‘‘ I started to notice that she was making different choices about food,’’ says Jan. ‘‘ There was always an excuse — ‘ No, I don’t want a salad sandwich, I’ll just have the salad without the bread’.’’
So began a near year-long ordeal during which mother and daughter consulted their GP, then waited weeks to see a psychologist and dietitian, before Ashleigh was finally taken to the eating disorders unit at the Children’s Hospital at Westmead, Sydney.
At the time of her admission, Ashleigh had lost over 20kg. Her periods had ceased eight months earlier. Her hair was falling out, and was being replaced by a soft fuzz similar to that on baby’s heads. Her teeth were brittle and chipping, her skin was breaking out and she had dark circles under her eyes.
Whereas a normal heartbeat would have been somewhere between 60 and 70 beats per minute, Ashleigh’s scarcely rose above 42.
‘‘ They had to tube her immediately, and put her under heat lamps for three to four days,’’ her mother recalls. ‘‘ She was tubed for a week.’’
Anorexia nervosa is a lethal disease that kills 20 per cent of those affected — a higher mortality rate than for either depression or schizophrenia.
There is a paucity of research comparing different treatments for anorexia, but there is a push in Australia to widen the availability for a treatment method that has the most research evidence to back it up.
Called the Maudsley Approach, it is suitable for people who have had anorexia for less than three years. Contrary to previous treatment protocols — many of which have involved hospitalising the patient when they become dangerously ill, effectively separating them from their families for weeks on end — the Maudsley Approach puts parents in the front line by teaching them how to handle the problem at home.
Once patients are well enough to leave hospital if they initially required inpatient treatment, phase one of the three-stage treatment focuses on weight restoration. A therapist works with the family, emphasising to the anorexic patient the severe health dangers associated with starvation, and coaching the parents on how to insist the child eats.
Siblings are also involved to be a support for the patient.
Once the adolescent has accepted the need to eat and weight is returning, the treatment moves into phase two, when the therapist and parents help the child take more control over their own eating, gradually trusting them to take more meals unsupervised. Phase three starts when the adolescent can maintain their weight above 95 per cent of their ideal weight, and is aimed at establishing a healthy identity. The three phases usually take one year. Trial results show between 60 and 70 per cent of adolescent patients have recovered by the end of the year-long treatment, while 75 to 90 per cent have regained their normal weight five years later.
The method is not without its critics, who say not all parents are able to give up work in order to supervise children all day. They also question the effect on siblings of being sidelined, and having nightly dinnertime confrontations — sometimes including, as in Ashleigh’s case, threats of suicide — played out nightly near or in front of them.
One of the main international advocates of the approach, Daniel le Grange from the University of Chicago — who helped develop it further after it was first developed at the Maudsley Hospital in London, where he once worked — has been in Australia for the past several weeks, briefing health workers on how the program works and what training is required.
The program is non-drug-based and has negligible commercial links. The main outlay for parents and health workers is a text book on what to do, costing about $20 and $50 respectively. It has now been adapted for treatment of bulimia, which is more common than anorexia but does not have such serious outcomes.
After a slow takeup by a handful of centres in Sydney and Melbourne, and a few in Victoria, availability of the Maudsley Approach for anorexia may soon widen more rapidly thanks to a more enthusiastic backing from NSW Health.
For many families, it’s a better option than some in-patient treatment programs, which can be extremely expensive and which in some cases have forced families to sell their homes to finance it. Even so, it’s not for the faint-hearted. Jan remembers her daughter ‘‘ screaming, arguing, (and) my husband and I sitting on either side of her at the table so she couldn’t escape. We would be at the table for three hours so she would eat something — not one night, but night after night after night.’’
Le Grange concedes the program can be ‘‘ gruelling’’, but counters criticism that it’s not a realistic option for those parents who can’t afford to take several weeks off work to give the sick child the care and supervision required.
‘‘ If parents don’t have that luxury, we can look for grandparents or aunts,’’ le Grange says. ‘‘ You just have to be creative as clinicians.’’
The only other reason why someone might not be suitable, says le Grange, other than having anorexia for more than three years, is that they are too sick. The cut-off is if someone is below 75 per cent of their healthy weight, a category that covers about 20 per cent of patients presenting with anorexia.
Stephen Touyz, professor of clinical psychology at the University of Sydney, and codirector of the Peter Beumont Centre for Eating Disorders at the Wesley Private Hospital, says the Maudsley Approach received the top rating of any treatment for anorexia from Britain’s National Institute for Health and Clinical Excellence, which assesses the cost-effectiveness of therapies for the UK’s National Health Service.
Touyz, who is working on a tool that will allow doctors to grade a patient’s anorexia by severity — much as cancers are currently graded from one to four — says the strength of Maudsley is that it encourages early intervention in anorexia.
‘‘ The message is: if you think your child has anorexia, you want to get in early, and treat it early,’’ he says. ‘‘ Because if it becomes chronic, it’s very hard to treat . . . and Maudsley does have highly successful outcomes.’’
Ashleigh, meanwhile, has stabilised her weight at 52kg. Jan, who says she would recommend the Maudsley Approach to others, says the next milestone will be when Ashleigh’s periods restart, which the doctors think could be within three months if she can keep her weight up.
‘‘ It’s not a quick fix. But we’re absolutely stronger as a family. We always were strong.’’
Make it work: Daniel Le Grange says that if parents can’t give the time to help, then other family must