9:10pm Monday 26th January 2009
By Helen Bulbeck
Ok - I'm getting used to blogging but this blog is far too long. I have done some research and the average blog should be around 250 words. So I will understand if you don't get to the end of this one. Newspapers have been the theme for me this week. I was incensed to read what the Independent health correspondent had written. He was having an argument with his wife. The argument arose because the NHS had been unable to provide critical information to a brain tumour patient, which would have save her having to raise £130,000 to go to the USA for proton therapy treatment.
Jeremy wrote the following: 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?
Well, not Jeremy! And he now knows this. If you have the stamina to read on, this is what I replied: I hate to tell you that on this occasion your wife is right. I am the mother of a beautiful 23 year old daughter who has had brain cancer - of the malignant sort - and she has survived it. And do you know why? Because I spent a year finding a solution which involved a Jewish Rabbi in Israel and two neurosurgeons in the USA. If I had taken the doctors' opinions in the UK as gospel, Meg, my daughter, would be dead now. As it is, she has just completed her MA and is engaged to be married in May. But it is worse than that; not only did the first neurosurgeon we met in the UK tell us there was nothing they could do for Meg, he also told us not to go to America as 'they are just after your money.' Poor man! He was damned - if he did know about treatment options abroad and didn't tell us, he should have done, and if he didn't know, then as Professor of Neurosurgery, I would have expected him to know. But to not tell us is unforgiveable. It is up to the patient to decide their treatment options and if they need extra resources then there are ways and means of acquiring them. We did. And the cost of Meg's surgery in Boston? A mere £35,000. Not much for a life, is it? And it wouldn't have cost the surgeon anything to spend five minutes telling us about our options. The patient needs to know and if they chose not to look the tiger in the eye then so be it, but at least give them the option.
So I raise a glass to your wife - you should too!!
And Jeremy had the decency to reply (an edited version here): "What a wonderful msg! I am copying it straight to my wife, who will be gloating for days (not a pleasant sight). Yours sounds a remarkable story and I am delighted it has had such a positive outcome. I was always on weak ground discussing 20-something cancer sufferers."
So is this another journalist won over to our cause? Possibly not, but it is a starting point. So - who is right? Over to you....
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