The meaning of autonomy

In an unusual case this week, the High Court ruled that it will be lawful to force treatment on an incompetent 55-year-old woman in her best interests, despite her apparent dissent and lack of co-operation stemming from phobias about hospitals and needles. The woman has a severe learning difficulty which apparently makes it impossible for her to make a competent decision. She also has an operable but life-threatening cancer. A hysterectomy is indicated. No living will has surfaced to prevent treatment.

Read further:
The Court Judgement DH NHS Foundation Trust v PS [2010] EWHC 1217 (Fam)
Telegraph Newspaper report
Guardian Newspaper report
BBC coverage
Court of Protection
Mental Capacity Act 2005

Autonomy is a freely used word – a freedom to pursue one’s own good in one’s own way as long as it doesn’t interfere with the freedom of others – or often to denote a principle of allowing a competent adult to make decisions about his or her medical treatment. But it is far from straightforward, both in practice and in theory. We all recognise a difference between what we want and what we ‘really’ want. Hindsight can be a wonderful thing. I didn’t ‘really’ want that extra bun that has now burdened me with calories and an expanding waistline, but I chose it freely. Have I always made the choices I really should have made if I was thinking clearly?

Capacity – the ability to take on board the necessary information, believe it, weigh it in the balance, and retain it long enough to make a decision – is something that can often be enhanced or reduced by circumstances. Everything should be done to enable a patient to feel comfortable, relaxed and reassured so they can make a decision without pressure or distraction. Is it unreasonable to wonder if the woman’s phobia could have been treated to the point where she could have made a meaningful decision? Perhaps not. But when we look closely it seems every effort had been made. The woman herself had made decisions to have the operation before, and only to cancel at the last minute. The judge considered the various medical testimonies and also a report by learning disability community sister employed by the local Mental Health Services NHS Trust. He had to authorise not only the operation but the sedation necessary to ensure she would comply.

It is important that hospitals seek the guidance of the courts in such dilemmas. In the case of Devi v West Midlands RHA [1980] C.L.Y. 687, surgeons were successfully sued for performing a hysterectomy on a woman who had only given consent to repair her uterus. In Re C [1994] 1 WLR 290, a paranoid schizophrenic patient detained in Broadmoor mental hospital had gangrene in his left leg and doctors considered that amputation was necessary to save his life. He refused such treatment, saying he would rather die non two legs than live one one. But although he was a paranoid schizophrenic incompetent about many things, his mental illness did not render him automatically incapable of making a decision about his medical treatment. More recently, our feelings about the right to refuse treatment have been strained by the case of Kerrie Wooltorton, who drank anti-freeze and then presented an advance directive at the hospital in a successful attempt to persuade them not to save her life.

In Re MB (Adult, medical treatment) [1997] 38 BMLR 175 CA, a woman needed a caesarean section, but panicked and withdrew consent at the last moment because of her needle phobia. The hospital obtained a judicial declaration that it would be lawful to carry out the procedure.

It would seem that in the present case, the woman clearly did not have capacity to make a the necessary decision, that the treatment will be in her best interests, and she most possibly will feel afterwards that it was indeed the right decision and the one she really did want.

GMC Guidance on consent and refusal of treatment (Re C, Re MB, Re B, Re T and others)
Sheila McLean
on advance directives and the Kerrie Wooltorton case
Kings College blog on the Wooltorton case
Ideals of patient autonomy in clinical decision making: a study on the development of a scale to assess patients’ and physicians’ views (free registration required)
Practice Note (Official Solicitor) Medical & Welfare Decisions for Adults who Lack Capacity

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