It's among the most difficult of conversations that doctors have with their patients. How do you tell someone the drugs aren't working, that chemotherapy is futile or the side effects of treatment are likely to ruin what little time may be ahead? There is no denying it: this kind of conversation is hard to hear and difficult for doctors to initiate. And the climate of debate around NHS funding for new drugs doesn't always help.
What are people with cancer and their family and friends to make of the headlines claiming "Don't give out cancer drugs if it's just to extend life: treatment costs can't be justified, say experts"? What, we may wonder, are cancer treatments for, if not to extend life?
The headline came from the Daily Mail, the news itself came from the Lancet Oncology, which has launched a commission entitled: "Delivering affordable cancer care in high income countries." A large assortment of oncologists and cancer surgeons have put their names to the article, which says that "the burden of cancer is growing, and the disease is becoming a major economic expenditure for all developed countries. In 2008, the worldwide cost of cancer due to premature death and disability (not including direct medical costs) was estimated to be $895bn (£570bn). This is not simply due to an increase in absolute numbers, but also the rate of increase of expenditure on cancer."
The authors add: "patient numbers (due to the ageing population) will increase, and treatment protocols will be more complex, and therefore more expensive. The challenge to developed countries is how to collectively deliver reasonably priced cancer care to all citizens."
They are right. Cancer treatments shouldn't just be measured in how many more days you survive if you take them. We are spending hugely on cancer and a lot of that money may not be benefiting patients. High-income countries are also enthusiasts for screening people without symptoms of cancer, finding many that would never maim or kill and treating them just as aggressively.
Our other recent "success" has been the increase in sophisticated drugs for treating cancer. These tend to be expensive. Over the last decade there's been Herceptin, or trastuzumab, for treating breast cancer, which originally cost £20,000 per year. The lung-cancer drug Tarceva (erlotinib) was not approved by the National Institute for Clinical Excellence (Nice), the Government's watchdog on new treatments, earlier this year for long-term maintenance treatment in people with lung cancer; it would cost about £1,400 per month. Last year, Votrient, or pazopanib, was approved by Nice for kidney cancer after its makers dropped its price from the original £14,000 it cost annually. The arc of progress tends to be the same: cancer patients and/or charities campaign for a new drug to be approved by Nice; Nice assesses the evidence and if it rejects the drug, the campaigners are upset and go back to campaigning. Rarely is there sensible interjection by pharmaceutical companies, which only occasionally accept that Nice may be right.
Logically, if a drug is not cost effective, then the manufacturers should either make it cheaper or more effective. If you create a drug that isn't very good, then it shouldn't – reasonably, by Nice's reckoning – be very expensive. Sometimes pharmaceuticals do drop their prices. Rarely is there a campaigning group that decides a new cancer drug isn't up to much.
How good is this new generation of drugs? It feels like heresy to start with scepticism, but it's what we need. Let's take erlotinib, which Nice did not approve for maintenance in lung-cancer patients. It noted that side effects included diarrhoea, gastrointestinal bleeding, loss of appetite and eye problems. The trials the manufacturer submitted included comparisons of the effects of the drug on tumour size, survival as cancer-free, or death rates. The average survival in the erlotinib group was 11.9 months compared with 9.6 months in the placebo group. So we can sometimes extend life – yet good medical treatment is not just about months of life gained, but how you want to spend your last days. Is the possibility of staying alive a couple more months worth the side effects and consequences of treatment?
This question often gets buried in the excitement that happens when a new cancer drug is unleashed on the market. Patients are now, quite rightly, encouraged to be co-partners in their care. But patients need fair information to make good choices. The equation becomes more difficult when we realise that many cancer charities, which may be campaigning for fast releases and the quick prescribing of new drugs, have been funding associations with pharmaceutical companies.
For example, when Herceptin came on the market in 2005, several high-profile breast cancer charities campaigned for it to be made immediately available. Later, a doctor wrote in the British Medical Journal of her own decision. Initially, listening to reports about it, she said: "I simply could not understand... why such an effective treatment should be denied to women." Later, however, she found that the potential advantage was outweighed by potential side effects, particularly cardiac effects. "So I elected not to receive the drug and will be happy with that decision even if my tumour returns," she wrote.
Doctors and patients have to be on the same side. Nice is seen as the enemy – restricting drugs – rather than a friend that is making fair decisions and protecting us from drugs which will, odds on, just give us life-sapping side effects. It's far easier for a doctor to recommend yet another course of treatment – even if it's futile – than it is to call time. Difficult conversations about how useful treatment is, and if stopping would be the best thing to do, are hard. But they are also essential if we are to be honest and acting in patients' best interests. I'm also troubled with our society's attitude towards cancer. We seem to have a happy tendency to dress cancer up in war regalia; we have magic bullets, battling survivors and talk of people losing their fight. It's wrong, for it does not mean that someone deciding not to continue with unhelpful treatment is weak, a loser, or no longer brave. Indeed, as the Lancet article says, "patients should be spared toxic effects and false hope". Our nomenclature about cancer tells us a bigger truth about how hard it can be to accept that treatment isn't working.
False hope is, probably, the biggest issue of all. Somehow, in our modern battlefield analogy, stopping "fighting" means doing "nothing", with the image of an inevitable death coming into sight. Yet people in the last stage of life, freed from the shackles of hospital appointments and unnecessary treatments, can have a good life and a good death.
We know, for example, that non-drug treatments can be very effective in cancer care. A paper in the New England Journal of Medicine last year randomised patients with non-small cell lung cancer to standard oncology care, compared to palliative care as well as standard oncology care. The patients getting palliative care as well – which focuses on controlling symptoms and giving psychological support – had a better quality of life. They also had less aggressive treatment at the end of life and an average of an extra two months' survival. That's as good as many of the new drug treatments on offer. This is the kind of thing patients need to know – palliative care is an important, effective treatment. But without marketing departments and PR spin, it may not be as heavily promoted as shiny new drugs.
Of course, if we are going to trust our doctors to help us make better decisions about what cancer treatments would be useful, and when to stop, we will want to make sure that they have our best interests at heart. By their professional code, they should. But the spectre of GP commissioning will place GPs in a new, rationing role. This is bad for patients – who wants to be wondering if their doctor isn't recommending a treatment because it's expensive or because it's no good?
It's notable, too, that Karol Sikora has put his name to the Lancet article. Dr Sikora, whose website describes him as "a world-respected oncologist and campaigner for better cancer treatment", went on record in 2009 as saying: "Britain uses far fewer innovative cancer drugs than its European neighbours. Compared to France, Britain only uses a 10th of the drugs marketed in the last two years. Partly as a result of these restrictions on new medicines, British patients die earlier."
This is contentious, in my view. He is also medical advisor to Cancer Partners UK, a string of private clinics treating cancer, as well as a "key person" at iHealth, a private company offering screening tests. Does Dr Kikora's support for the Lancet article mean he has changed his mind or is he taking the longer view? The superficial argument is that of an NHS budget being overstretched with cancer care. The deeper problem is that many expensive treatments are not as good as we might want to believe.
Dr Margaret McCartney's book 'The Patient Paradox – Why Sexed Up Medicine is Bad for Your Health' – will be published by Pinter and Martin in JanuaryReuse content