Contribution
I am most grateful to my noble friend Lady Cass for that introduction. This debate is extremely serious. Sometimes there has almost been black humour during it, but people have had devastating experiences and that is often what has brought them to this position.
I am grateful to the noble Baroness, Lady Royall, for intervening earlier because there are people who are desperate to live and suddenly deteriorate, and there are others who are quite resigned to dying and carry on living for quite a time. It is very variable. I also thank the noble Baroness, Lady Noakes, for flagging up the specific issue of motor neurone disease, because the disease trajectory is the important factor that will give you an indication. The problem is that although cancer is probably in some ways easier than most other conditions, motor neurone disease is incredibly variable, just as MS is, with dips and troughs and times that are much better and intercurrent infections, each one of which might be fatal. I remind the Committee that when we discussed this previously, I stressed that I wanted amendments about the progression of the disease—the disease trajectory. Those amendments were rejected, but I still think that they might solve the problem slightly better.
I remind the Committee of the wise words of the noble Lord, Lord Wolfson, when he summed up the previous group of amendments. I will not go over that again, but he really got to the point about the impossibility when patients want to know their prognosis. It is not often in medicine that you say never, but I have learned never to give a prognosis in terms of a number. I often say to people, “It would be easier for you and it would be easier for me if I could predict”, and then I help them in terms of quite simply planning for the worst, hoping for the best, and discovering what they want to do in whatever time they have left and how they want to do it. It is surprising how some people live remarkably long and some people, sadly, live for a remarkably short time, but even when you think someone is going to die in the next 48 hours and you suggest to the family that they stay in overnight, you can still be wrong. Many is the time when I have had a family stay overnight, they are exhausted the next day and the patient, fortunately, is sitting up in bed having breakfast, which is a relief, but people are tired.
I think the history of the six months came about because of the benefits system—oh, the noble and learned Lord shakes his head. Well, I shall just say a brief word about that. There are enhanced benefits that people are eligible for. It used to be that you were eligible for fast-track benefits at six months. What happened was that, because people heard that as some kind of prognosis, doctors and nurses were very hesitant to recommend going for benefits then, which is why there was all the discussion with the Department for Work and Pensions to move to the special rules at one year, when it is much easier to talk to a patient and say, “We need to plan for the worst. I think you would be eligible. We can apply, and if you live for three years, you won’t even be called for an assessment for three years, so let’s go for it now”. That can help people in difficult financial circumstances.
However, to get back to the point of the amendment, while the mathematics behind it are admirable—there is a serious misunderstanding of what “mean” and “median” mean, and many people do not understand the difference—I hope that these amendments will not be considered at all. I plead that we look at the course of disease in terms of determining whether somebody is likely to die, and then the probability of them dying within a six-month period. That probability assessment needs to be clearly written down and clearly defined so that people are not misled in either direction.