A bill being considered by the Department of Health might make it easier, when all else has failed, to get the treatment you need
You're sitting in the chair at the GP's surgery, or perhaps you're lying in a bed in the intensive care unit, and the doctor looks into your eyes, or holds your hand, or maybe even talks over your head to your mum, and says,
"I'm sorry, there's nothing more we can do."
Is she talking to you? About you? About your only son? About your dad? Your wife?
The words ring in your ears.
A glimmer, the faintest spark, of uncertainty, of hope.
"Is there nothing, nothing at all?" you (or your mum or your brother) ask.
"Well," the doctor says, "There's this experimental treatment that looks promising..."
"But I don't want to be sued."
How do you feel?
When there's no hope left and you feel like your heart has been torn out and crushed in a vice, how do you feel about this merest sliver of hope, this one bright light in a world of dark, that is being refused to you because the one person who at this moment should care about nothing else is worried that their malpractice premiums haven't been paid this month?
Maybe, actually, it's not all that bad.
Maybe it's nothing terminal, not cancer, not that bad, just some niggling thing you've been struggling with for 15 years, mustn't grumble, worse things happen at sea, nothing to complain about really, but by Christ you wish it'd go away and this wet-behind-the-ears mugglehead just out of med school is telling you there's nothing that can be done because of an infestation of lawyers.
How likely is this scenario?
To be honest, I have no idea. But a sufficient number of people think it is a common enough scenario that there is a draft bill, sponsored by Lord Saatchi as a result of his wife's death from ovarian cancer, proposing to "address challenges to innovation in bringing forward new medical treatments".
Medical treatment these days is driven by guidelines. You present with a condition and the attending physician uses their judgement and the guidelines to determine what treatment to give you. The guidelines are (for the most part) evidence-based; they are informed and changed by the results of trials and new scientific research. When evidence isn't available they are shaped by expert opinion. Adherence to guidelines improves outcomes – and there is quite a literature on improving adherence to guidelines.
But what happens when a patient is treated by a conscientious attending physician, treated to the guidelines, and doesn't get better? Often we are left with the dreaded phrase, "There is nothing more we can do." And when physicians do in desperation go off the beaten path – well, this is how an acquaintance of mine put it: "Most of my patients are referred to me having repeatedly failed to respond to all known published guidelines. I get criticised for not sticking to guidelines."
Wouldn't it be better for patients if physicians felt they could, in all responsibility and with the duty of care of their patient centremost in their thoughts, try experimental treatments that look promising but haven't yet been proven in a phase III clinical trial?
The Medical Innovation Bill aims to make this possible – or at least make it more likely by mitigating the threat of litigation. The bill is designed to safeguard against homoeopaths and other quacks by requiring doctors to follow required transparent and accountable procedures, to responsibly consider new treatments and ideas, and by exposing the "doctor who acts alone and in a reckless way":
The patient’s medical doctor will be obliged to discuss the patient’s case with specialists and experts, normally within their own hospital or clinic, seeking consensus from them about the best course of action for the patient.
It may be decided that the standard procedure is not going to be effective and that offering the patient an innovative treatment that deviates away from standard procedures is a good thing to do.
The option – and it will only be an option – must be explained carefully to the patient. This includes explaining the risks. In some cases this may mean explaining that the risks are unknown – especially when the treatment on offer is new.
The [team of specialists and experts] may not reach a unanimous view. If that happens, the doctor must let the patient know.
The patient will always have the option to go through with standard procedures, or consent to the innovative treatment.
As it happens, I'm familiar with some of the named supporters of the bill, and if it carries any weight with you I can vouch for their non-quackness.
The bill has been through a public consultation phase and is now with the Department of Health. If you think it is a good idea, you could write to your MP, and you can also let the supporters of the bill know.
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