(1 week ago)
Lords ChamberMy Lords, I will speak to Amendments 175 and 384, in my name, and I am grateful to the noble Baroness, Lady Fox of Buckley, for her support.
These amendments concern prognosis. We have discussed prognosis briefly in previous debates, but I wanted to raise this in the context of my own experience of cancer and to bring some sort of mathematical thinking to bear on the question. In August 2023, I was diagnosed with stage 4 oesophageal cancer. It was a fatal diagnosis and I was told that I had 12 months to live—18 months, if the character of my tumour qualified for immunotherapy, which it did. I do not need to be congratulated on being particularly brave for sharing this story, since noble Lords will hear, if they stick around, that the story has a happy ending.
Within a week or so of that diagnosis, a friend of mine sent me an article which had been written in 1991 by Professor Stephen Jay Gould of Harvard University. Professor Gould was an evolutionary biologist, and he was quite well known because he wrote a number of popularising science books—the sort of thing that sixth-formers and undergraduates would have read widely. He was a well-known and liked figure. The article was about his story. In 1982, he had been diagnosed with abdominal mesothelioma, a fatal condition, and the hospital would not give him a prognosis. When he got back to Harvard, he went straight to the medical library, and he found on reviewing the literature that he had eight months to live.
After about 15 minutes of shock, he began to think about what that meant, and he realised that the prognosis was in fact, arithmetically speaking, a median. All that it actually meant was that half the people in his condition would be dead by eight months and the other half would live longer than eight months. In fact, this median told him nothing about himself; it was an abstraction. To understand his own prospects, he had to look at the underlying data. When he looked at it, he found that quite a lot of people lived quite a long time beyond eight months in his condition. He said that
“all evolutionary biologists know that variation itself … is the hard reality … Means and medians are the abstractions”.
He asked himself, “What do I have to do to be one of those people who live a long time?” Speaking to oncologists, he learned that the universal response from all of them was that the key to survival in cancer was a positive attitude. To quote again briefly from the article,
“those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, and with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say tend to live longer”.
That is how he approached it, and I think we can learn a few lessons from this. I would like to run through what I think they are.
Baroness Royall of Blaisdon (Lab)
My Lords, what the noble Lord says and the article that he cites are very interesting. I am jolly glad that, for some people who have positive attitudes, they live a long time with their cancer. I know from personal circumstances, as do many other people around this Chamber, that we have had loved ones who have had very positive attitudes towards their cancer and they have died.
My Lords, I am not saying—nor was anybody—that a positive attitude on its own is going to save somebody from cancer. Professor Gould also benefited from the fact that he had the best medical treatment, and he went on various experimental courses. That was not my point at all. But people with a positive attitude, as I quoted, tend to live longer. I think that is scientifically demonstrable. I am surprised at the noble Baroness’s intervention.
I think we can learn some lessons from this. First, prognoses are not generally individuated. They are medians drawn from large data sets based on clinical trials. As Professor Gould said, if you get a prognosis of six months, the average person will think that means that they are going to be dead in six months, which, from a scientific point of view, is precisely the wrong conclusion.
Secondly, even when a prognosis is not based on a median but is an attempt by a doctor to give an individual assessment, it is very likely to be wrong. There are well-established studies on this. I will cite just one, which is Orlovic et al in 2023. It shows that, beyond 14 days, a clinician’s prognosis is almost always wrong. It is extremely unreliable. Within that shorter period of a week or two, a doctor and indeed an experienced nurse can very often say, with great reliability, that somebody is not going to last very much longer. But beyond that, an individual prognosis is of very little value indeed.
I think we all accept that for anyone who gets a prognosis, there is a degree of unreliability about it. Nobody believes that a six-month prognosis means exactly six months, or that eight months means exactly eight months, but we have a tendency to think that it is because we do not have enough knowledge—that with a bit more science and research, we could refine that prognosis so that it was more accurate. But as Professor Gould pointed out, the prognosis is merely an abstraction arising from the variability in the data. It is not that we cannot make the prognosis more accurate; it is that—