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

Medical Life

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?

Life and Style
ebookNow available in paperback
ebooks
ebookPart of The Independent’s new eBook series The Great Composers
  • Get to the point
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Ashdown Group: Front-End UI Application Developer

    £30000 - £40000 per annum + Benefits: Ashdown Group: Front-End UI Application ...

    Recruitment Genius: Digital Account Executive

    £18000 - £26000 per annum: Recruitment Genius: They work with major vehicle ma...

    Recruitment Genius: Service Engineers - Doncaster / Hull

    £27000 per annum: Recruitment Genius: Domestic Service Only Engineers are requ...

    Recruitment Genius: Employability / Recruitment Adviser

    £23600 - £27500 per annum: Recruitment Genius: The Employability Service withi...

    Day In a Page

    Where the spooks get their coffee fix: The busiest Starbucks in the US is also the most secretive

    The secret CIA Starbucks

    The coffee shop is deep inside the agency's forested Virginia compound
    Revealed: How the Establishment closed ranks over fallout from Loch Ness Monster 'sighting'

    How the Establishment closed ranks over fallout from Nessie 'sighting'

    The Natural History Museum's chief scientist was dismissed for declaring he had found the monster
    One million Britons using food banks, according to Trussell Trust

    One million Britons using food banks

    Huge surge in number of families dependent on emergency food aid
    Excavation at Italian cafe to fix rising damp unearths 2,500 years of history in 3,000 amazing objects

    2,500 years of history in 3,000 amazing objects

    Excavation at Italian cafe to fix rising damp unearths trove
    The Hubble Space Telescope's amazing journey, 25 years on

    The Hubble Space Telescope's amazing journey 25 years on

    The space telescope was seen as a costly flop on its first release
    Did Conservative peer Lord Ashcroft quit the House of Lords to become a non-dom?

    Did Lord Ashcroft quit the House of Lords to become a non-dom?

    A document seen by The Independent shows that a week after he resigned from the Lords he sold 350,000 shares in an American company - netting him $11.2m
    Apple's ethnic emojis are being used to make racist comments on social media

    Ethnic emojis used in racist comments

    They were intended to promote harmony, but have achieved the opposite
    Sir Kenneth Branagh interview: 'My bones are in the theatre'

    Sir Kenneth Branagh: 'My bones are in the theatre'

    The actor-turned-director’s new company will stage five plays from October – including works by Shakespeare and John Osborne
    The sloth is now the face (and furry body) of three big advertising campaigns

    The sloth is the face of three ad campaigns

    Priya Elan discovers why slow and sleepy wins the race for brands in need of a new image
    How to run a restaurant: As two newbies discovered, there's more to it than good food

    How to run a restaurant

    As two newbies discovered, there's more to it than good food
    Record Store Day: Remembering an era when buying and selling discs were labours of love

    Record Store Day: The vinyl countdown

    For Lois Pryce, working in a record shop was a dream job - until the bean counters ruined it
    Usher, Mary J Blige and Will.i.am to give free concert as part of the Global Poverty Project

    Mary J Blige and Will.i.am to give free concert

    The concert in Washington is part of the Global Citizen project, which aims to encourage young people to donate to charity
    10 best tote bags

    Accessorise with a stylish shopper this spring: 10 best tote bags

    We find carriers with room for all your essentials (and a bit more)
    Paul Scholes column: I hear Manchester City are closing on Pep Guardiola for next summer – but I'd also love to see Jürgen Klopp managing in England

    Paul Scholes column

    I hear Manchester City are closing on Pep Guardiola for next summer – but I'd also love to see Jürgen Klopp managing in England
    Jessica Ennis-Hill: 'I just want to give it my best shot'

    Jessica Ennis-Hill: 'I just want to give it my best shot'

    The heptathlete has gone from the toast of the nation to being a sleep-deprived mum - but she’s ready to compete again. She just doesn't know how well she'll do...