Bleak prognosis makes force-feeding ruling questionable
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The decision that an anorexic woman should receive treatment unnecessarily prolongs her suffering, argues Barbara Hewson
Anorexia is a mental disorder, which can be so severe as to justify compulsory admission and treatment under the Mental Health Act 1983 (MHA). Unfortunately, the mortality rate for anorexics is higher than for any other mental disorder.
In E [2012] EWHC 1639 (COP) (see 'Alcohol became 'only source of calories' for anorexic woman', solicitorsjournal.com, 21 June 2012), Peter Jackson J decided that a woman in Wales should be subjected to a year or more of compulsory re-feeding. The decision is controversial for two reasons: first, this may kill her; and, second, in the unlikely event she survives, she will still be miserable.
E, aged 32, has suffered from anorexia since her teens. She is also an alcoholic with a personality disorder. She got into medical school, but later dropped out. From 2006 on, she has spent 31 months in specialist units, and been sectioned ten times under the MHA. In 2011, she made two advance directives, saying that she did not want to be kept alive. She suffers from osteoporosis, opiate addiction and extreme malnutrition.
E, her parents and treating clinicians decided that enough was enough. She went on the Liverpool Care Pathway at a community hospital, receiving only palliative care. She stopped taking calories in March, and was on morphine. By mid-May, death was imminent. Suddenly the local authority took everyone to court, asking the court to investigate and protect E.
But someone in hospital is not in need of protection. It was not as if E had been locked in a cellar, to starve involuntarily. Mental health services had decided against compulsory treatment under the MHA. It is not open to a local authority to try and second-guess that. It is also arguable that E had a legitimate expectation that she would be left alone. It is unconscionable for a person to be encouraged to act to their detriment by others, only for an attempt to be made to shift the goalposts at the very ?last minute.
Inflicting suffering and risk
A court-appointed expert then argued for extreme measures to restore E, even though they carry significant risks to her life, and leave her with at best a 1:5 chance of leading a normal life. E asked to die with dignity.
NHS bean counters found £200,000-£300,000 a year for treatment in, presumably, a private hospital: resources that could otherwise be spent saving other patients. This involves a gruesome combination of forced feeding, probable mechanical ventilation, opioid withdrawal, potentially fatal re-feeding syndrome, and a prolonged stay in hospital with a limited chance of survival. Then she must start 'fundamental psychological and physical therapies'.
E's gastroenterologist disagreed: 'I have been repeatedly told by each new expert that this is not a hopeless situation and to re-feed E. Each time E has gone through the distress this causes her to be found back in the same situation. With the longevity and severity of her disease I am afraid I ?am sceptical as to the ability of any specialist to cure E.'
The judge's approach to E's capacity illustrates the predicament confronting a patient whose treatment decisions are challenged. If others agree with her decision, no one questions capacity; but, if they disagree, then she lacks capacity. Capacity, then, is contingent on others' approval.
The judge found that E lacked capacity, now and when she made her advance directives. He decided that she should undergo force-feeding because she is young, vulnerable and special and her life is 'precious'. In effect, he treated her like ?a child.
His reasoning is open to question. One reason for finding her directives invalid was that she was detained under the MHA when she made them. But mental disorder does not equate to lack of capacity. His other reasons were that he didn't agree with a doctor who thought she had capacity the day before she made the first directive; and he criticised the second directive, made with the help of a solicitor, because it was not accompanied by 'a full, reasoned and contemporaneous [capacity] assessment'. So, E hadn't jumped through certain legal hoops properly.
Disproportionate approach
The judge also invoked the Human Rights Act 1998. But The right to life under article 2 of the European Convention does not impose a duty to live, or to undertake risks, still less an obligation to suffer
It is typical of a pro-life perspective to regard suffering and risk to an individual as of secondary importance. But the deliberate infliction of prolonged suffering, with such a bleak prognosis, must be disproportionate. Put simply: it really isn't worth it. Why not acknowledge the obvious?