Dr Raj Persaud and Dr Peter Bruggen
The Daily Telegraph has reported that a leading judge who sits in the Court of Protection, Mr Justice Peter Jackson, has ruled that a former medical student suffering from severe anorexia nervosa, and who is at a life-threatening low weight, should be force-fed against her wishes by doctors.
Dr Evan Harris, the former Liberal Democrat MP and member of the British Medical Association’s ethics committee, is quoted by The Daily Telegraph to have responded: “The implications of force-feeding are really significant because she would need restraining or sedation and the treatment would last a year… It might not succeed and is itself life-threatening. To impose that on a patient who might be competent in refusing treatment is a very major step.”
The 32-year-old woman is described as not having eaten solid food for a year and her parents are reported by The Daily Telegraph to have told the court: “It upsets us greatly to advocate for our daughter’s right to die… We feel she has suffered enough…”
Mr Justice Jackson is reported by the newspaper to have conceded the woman stood only a 20 per cent chance of recovery even if she was put on an invasive force-feeding programme that would last at least a year.
Is it really true that medical intervention can be as dangerous as leaving people with an eating disorder to starve themselves to death? And is it also true that it’s pretty pointless anyway?
In a 2010 study by DrMarie Vignaud from the University Hospital of Clermont-Ferrand, France, all patients with Anorexia Nervosa admitted to 11 Intensive Care Units in France between 2006-2008 were investigated, and of 68 admissions, 7 died during the admission. The study published in the academic medical journal ‘Critical Care’, found the commonest cause of death was ‘Refeeding Syndrome’. This is a potentially fatal shift in fluid and electrolyte levels (minerals such as sodium, potassium and calcium which are distributed around the body where the delicate balance across cell membranes is vital for life) that may occur in the malnourished receiving artificial nutrition.
Precisely because of the dangers of refeeding, Dr Vignaud and colleagues point out oral refeeding is the best approach to weight restoration. But faced with absolute refusal to eat, or in cases with extreme malnutrition, feeding via a nasogastric tube may be life-saving, or in even more extreme cases, or when the digestive tract itself is no longer functioning, intravenous feeding may be used despite the risks.
Vignaud and colleagues point out the dangers of medical refeeding have to be balanced against the fact that Anorexia Nervosa is in itself one of the most fatal psychiatric disorders, with a mortality rate of almost 6% for every 10 years of having the illness; 12 times the rate expected for similar age- and gender-matched groups.
It perhaps sobering to realise in the light of these statistics that rates of anorexia appear to have been going up since the 1930’s. A 2007 study published in the American Journal of Psychiatry by a group lead by Anna Keski-Rahkonen at the University of Helsinki, Finland, found that up to 50% of Anorexia Nervosa cases are undetected by healthcare systems. Current estimates are that lifetime prevalence rates for Anorexia Nervosa in 20–40-year-old women are estimated between 1.2% and 2.2%. The rates for other milder eating disorders would be much higher.
Yet to be officially published, Daniel Rigaud and colleagues from the Service d’Endocrinologie-Nutrition, in Dijon France, followed up 41 severely malnourished anorexia nervosa patients and compared them with 443 less malnourished Anorexia Nervosa patients. The severely malnourished group of 41 had reached an average seriously low weight of 26 kilograms ( 4 stones 1.3 pounds) with an average height of 160 cm (5.2 feet) which translates to an average Body Mass Index of 10 (bear in mind the normal healthy range is roughly 20-25).
Body Mass Index is the measure nutritionists use to calculate whether your weight is healthy as it takes into account your height. The formula is your weight in kilograms divided by your height in metres squared. A BMI lower than 10 kg/m2 in adults is widely considered incompatible with life.
Rigaud’s study, due to be published in the academic journal ‘Clinical Nutrition’, found that all of the 41 severely malnourished anorexia patients received tube-refeeding: but during the in-patient stay, 1 patient died, 2 others suffered from myocardial infarction, 2 others from acute pancreatitis, and 5 from mental confusion.
Compared with the other 443 less severe Anorexia Nervosa patients (average weight in this less severe group was 40 kg or 6 stone 4.2 pounds), the 40 remaining patients (one died shortly after admission) had a worse 6 year outcome: a further 2 died (7% vs 1.2% in the 443 less ill group), and only 41% recovered (vs 62% in the less ill group).
Rigaud and colleagues conclude that in Anorexia Nervosa patients with a Body Mass Index of less than 11 kg/m2 , prudent tube-refeeding could avoid short-term mortality, but long-term, the prognosis remains ominous.
Perhaps part of the problem lies in the very battle against the fervent desire of the anorexic; perhaps something is being missed. Jill Holm-Denoma and colleagues at the University of Vermont, USA, in 2008 proposed a theory that the high death rate in anorexia nervosa may be linked also to an especially high suicide motivation, which may have been previously missed by clinicians and relatives. Their study is based on previous research which finds the risk of death by suicide among anorexic women is approximately 57 times the expected rate.
The study, published in the ‘Journal of Affective Disorders’, considered the suicides of nine women with Anorexia Nervosa. They were found to be more likely to use highly lethal methods, with low rescue potential, that would likely kill anyone. Three died by throwing themselves in front of a train, and two more died by hanging.
Perhaps some sense of the force of will involved in Anorexia Nervosa can be gleaned from a case report from the American Journal of Psychiatry published in January 2012 of a congenitally blind woman who developed anorexia nervosa, despite it being traditionally associated with body image disturbance. Dr Jennifer Thomas and colleagues based at McLean Hospital, Massachusetts General Hospital, and Harvard Medical School reported that the patient used tactile comparisons (e.g., feeling another person’s arm bones during an embrace) to bolster her preoccupation with weight and size. She paid obsessive attention to others’ voice location and pitch, which she construed as indicators to height and weight. Higher locations from where a voice originated indicated greater height, while lower pitch suggested expanded abdominal girth. She further decided others’ body sizes through vigilance for changes in air pressure when standing nearby, deciding greater pressure indicated larger body size. 20 weeks after some treatment which emphasised a Cognitive Behavioral Therapy approach to her body image disturbance, the authors of this study report that the patient appeared to be maintaining her weight at around 110 pounds (BMI 17.6).
Amy Lopez a social worker at the University of Colorado Hospital, USA has written movingly in 2010 of her struggle to help an anorexic woman with a Body Mass Index of 10.9, and after 10 years of fruitless treatment the medical team began to discuss ‘medical futility’. The decision was made to shift from aggressive treatment to supportive care, while the anorexia nervosa took the patient’s life, as described in Lopez’s first person account ‘Moral Residue: Difficult Ethical Choices in the Treatment of Refractory Anorexia Nervosa’ published in the ‘Clinical Social Work Journal’.
The patient would no longer be hospitalized, would have no forced feedings and no Intra-Muscular medications. The patient began to recover paradoxically as treatment was withdrawn, but eventually took a turn for the worse, and died.
Anorexia Nervosa is a serious and complex disorder for which treatment must be tailored to the needs of the individual, but where ‘the system’ seldom allows this. Life saving intervention is required more than in most other psychiatric disorders.
Patrick Keown from Queen Elizabeth Hospital, Gateshead, and colleagues, published in the British Medical Journal in July 2011 an analysis of the impact of the dramatic reduction in UK NHS psychiatric hospital beds between 1988-2008 – a period when alternatives to hospital admission in the form of community care was supposed to be provided.
Keown and colleagues found the rate of involuntary admissions (being ‘sectioned’ under the Mental Health Act) per year in the NHS increased by more than 60%, as the provision of mental illness beds decreased by more than 60% over the same period. The authors calculated the closure of two mental illness beds lead to one additional involuntary admission in the subsequent year. This data referred to all of psychiatry – not just eating disorders – but it also might also contribute to our understanding of why anorexia has ended up in the courts and in the news now.
A dramatic rise in the use of compulsory admissions over the last two decades does not mean that psychiatric disorders have in their nature got worse, but that the prospects for those who have them seem more bleak.
This is because a progressively starved, more disorganised NHS is less effectively caring.
Those desperately trying to look after patients who’ve reached the end of this road, are therefore forced to seek help from sources outside the health service.
So now we dispense with the doctors, and retain the lawyers.