My Lords, I declare all my interests in this field, which are listed. These amendments are incredibly important for patients who are dying. The Government’s amendment is to be welcomed; I can see no problems with it. It might sound bizarre but I have some slight anxieties over the wording in two places in Amendment 137. It refers to a preferred place of death, whereas I would rather see the words, “preferred place of care”. Many people who are dying know that they want to spend their last days, weeks or months at home. They want to have everything done to support them at home, particularly out of hours. We have debated this for some time within my own specialist teams and specialist services. We are worried that there could be two unintended consequences. People who are not yet ready to confront the fact that they really are dying will be pushed to have that conversation before they are ready, which would be traumatic. There could also be the unintended consequence of some kind of target developing and patients being whipped out of one place of care.
The difficulty we see clinically is that when clinical situations change, patients sometimes change their mind. It is not uncommon for someone who originally said they wanted to die at home to say, when they really are dying, that they feel safer where they are and want their family brought in and as much of a home environment created as possible. It may be the regulations at ward level, or the way in which they are interpreted, which are blocking that and need to be addressed. For example, it does not matter at all if you have a husband on an all-female ward, but I have occasionally known staff to think that it does and that it is not appropriate to have a man stay overnight, which is absolutely appalling. Staff need to recreate the home environment where that person is as much as possible. However, if they have complex needs or unstable symptoms, they may well feel safer in whichever place they are, whether it is hospice or hospital.
In looking at the amendment I also tried to get some details of how many patients are successful under the DS1500 special rules. It is quite difficult, because I understand that the Department for Work and Pensions does not routinely collect that data. However, it seems as if in the year 2011-12, 11% of all successful claims were for the category of patients who were deemed to be terminally ill. One of the difficulties when you are looking at local authority charges for adult social care is that we cannot predict prognosis. That is always the catch with defining terminal illness. We are making our best guess, as it says in the Welfare Reform Act, as to whether someone can “reasonably be expected” to die within six months, but it is no better than that. It is a guess. There are patients who outlive their prognosis. I understand that the DWP does not push for reassessment inside three years, so there is quite a lengthy period of leeway. The potential difficulty that I can see unless this is really thought through and costed is that if somebody turns out not to be dying, what will then happen? Would they be forced to go through a reassessment? Would that then be used to try to claim back money from them afterwards? I raise those questions which would have to be thought through very carefully.
I certainly find it difficult—in fact, offensive—when people have to be assessed for care when they are quite clearly dying. However, there is that group of people you really do not know about. They appear as if they are dying. They tend to be more in the non-cancer rather than the cancer population, where their prognosis prediction becomes really difficult.
Those are just some caveats, although I support the spirit of the amendment wholeheartedly in terms of having patients where they want to be. However, as I said before, we need to focus on their place of care during their last days, weeks and months, and not only on their place of death.