Jeremy Laurance: How much should doctors tell you about your treatment?

Medical Life

Tuesday 13 January 2009 01:00

In the moral maze that is our home, I am constantly being ambushed by the ethical police. My daughter accuses me of being too negative (as in, "I fear that may not work" as she sits at the kitchen table dabbing finest sauvignon blanc on to a favourite jumper to remove red wine stains).

But the latest charge emanated from my wife. "You're a paternalist," she shrieked the other night, her voice rising several octaves. The outburst was triggered by my account of the story of Melissa Huggins – but the issue that bothered my wife was different from the one that bothered me.

Huggins is a 29-year-old primary school teacher from Staines, Surrey, who was diagnosed in October with an inoperable brain tumour (which had also spread to her spine), a recurrence of an earlier tumour that was surgically removed in 2004.

Her doctors at Charing Cross hospital initially told her that there was nothing they could do – until her father, a retired aircraft engineer, discovered from the internet that there was a hi-tech form of radiotherapy, called proton treatment, that might help. But it was not available in the UK and was very expensive.

So far, so predictable. We are used to the NHS lagging behind the rest of the world on the uptake of new technology. What surprised me, however, was that the NHS actually had a scheme to send patients abroad for proton treatment – but nobody appeared to know about it. Neither Huggins's GP, nor Surrey Primary Care Trust, nor her doctors at Charing Cross hospital, mentioned it – exposing what I dubbed an "information lottery" in the NHS: treatment only goes to those in the know.

What outraged my wife was something different – that the doctors had not told Huggins and her family of the proton treatment (regardless of its availability on the NHS). I had quoted, approvingly, Huggins's boyfriend's comment that "to be fair to the doctors [being ignorant of the NHS scheme], they could not recommend something that the NHS could not provide". Her response? "Rubbish."

Did she have a point? A doctor's duty is always to do the best for each patient. But what is "best"? How can it help a patient to be told that there is a treatment for their condition but no way of getting it?

My wife's argument was that withholding information denies patients choice. We cannot know what resources – in the widest sense – they may be able to draw on (Huggins's family and friends have raised £132,000 towards her treatment costs in the US in a couple of months), and it is not for doctors to judge how they will use the information.

I disagree. Deciding what, how much and when to disclose to patients with very serious illnesses is one of the hardest tasks we demand of doctors. Every case is different and requires an acute sensitivity to the patient's state of mind. The most difficult part is judging how much, or how little, they want to know.

So who is right?

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