An “intelligent and charming” 32-year-old former medical student on the brink of death because of chronic health conditions and severe anorexia has twice signed legal declarations that she should not be resuscitated and given food and water against her will.
Her parents have said her life is “torment”. “E” (as she is known) has not eaten solid food for a year. They accept that nothing more can be done to help her and have agreed that she should be allowed to die peacefully, “in a very dignified and considered way”. However, Mr Justice Peter Jackson, sitting at the Court of Protection decided that E can be force-fed against her wishes after considering “almost equally competing factors”.
The judge said that for the first time in his experience, the case raised “the real possibility of life-sustaining treatment not being in the best interests of a person who, while lacking capacity, is fully aware of her situation”. Nevertheless, he has come down in favour of “life-preserving treatment” although doctors have said there is still only a 50/50 chance that E will survive. The judge said: “We only live once – we are born once and we die once. E is a special person whose life is of value. She does not see it that way, but she may in future. It is lawful and in her best interests for her to be force-fed if necessary.”
The case came before the court last month, when an urgent application for treatment was made by E’s health authority in Wales. Legal experts says it is one of the most finely balanced decisions in a right-to-die case. Mr Justice Peter Jackson may well be extremely knowledgeable about anorexia: its destruction of internal organs, its danger to childbearing prospects and the psychological vice it has on its sufferers. And that it seems to recruit from the ranks of the talented with a strong desire to fulfil expectations. E had done well at school but unbeknownst to her parents she had been sexually abused for several years. She became an alcoholic, dropped out of medical school and has spent the past five years in various kinds of treatment.
But any relative who has witnessed the terrible consequences when a much-loved child builds a defence against the world by a rigorous regime of nil by mouth will have enormous sympathy for E’s parents when they say of their daughter: “We feel that she has suffered enough.” Their voice should have been more strongly heard.
E’s case must also draw attention to the scandalous lack of “life-preserving” interventions and treatments in much of England and Wales for the growing army of children, teenagers and adults profoundly affected by eating disorders (at least 1.6 million and likely to be many more). This is in spite of the fact that early diagnosis and support can prevent the long-term damage that has destroyed E’s very modest ambition that many of those affected by an eating disorder also passionately desire, namely, to live a normal life.
Eating disorders have been widely recognised for several decades, yet still GPs are slow to diagnose, placements in special eating disorder units are insufficient, research is patchy and too many young people with severe cases of anorexia are placed in inappropriate general psychiatric wards. Beat, the eating disorders charity, is a sterling campaigner but the often excellent help provided in parts of London and south-east is still far from the norm.
Prevention also matters. Recently, 19 worldwide editors of Vogue launched the Health Initiative pledging not to hire a model under 16 and to concern themselves with the health and wellbeing of readers and models. For now, the airbrushing and wraith-like images continue.
However, what happens on the catwalk is only the most brightly lit aspect of a culture that continues to deify the skeletal. So much so that a growing number of the generation that ought to be unselfconsciously playing in the park are counting calories instead.
In the case of E, Mr Justice Jackson concluded: “I would not overrule her wishes if further treatment was futile, but it is not. Although extremely burdensome to E, there is a possibility that it will succeed.”
Let us hope that he is correct.