Although I’ve mentioned the proposed NHS constitution before (this is the proposal to turn targets into patients’ rights). Cynics say this was invented by Labour to force the Conservatives to be against patients’ rights by making it expensive and embarrassing to back away from the sorts of standards on waiting times that we have become used to over the past ten years or so.

One of the proposed rights is a ‘right to die at home’. This is not going to happen because it is set for 2013, by which time Labour will probably be out of office. The proposal is sensibly backed up by the development of advance care planning (see my resource document on this). The crucial bugbear, of course, is that when you give someone a ‘right to die at home’, you give family members and other carers the responsibility to stress themselves out coping with situations they should not have to cope with. The reality is that many people need to go into hospital for their own and their relatives’ security and peace of mind. The important thing to think about for most patients and their families is what is called ‘preferred place of care’. Where you die may be less important for most people than where you are cared for. But if you give people the right to be cared for where they want, you open our health and soical care budgets to a huge possible expenditure. Much easier for the politicians to get sentimental about where we die.

However, the document is right to say that if you are going to do more than just say the words that people should be able to die in their preferred place of care, then you have to have a whole range of good community services available in people’s homes. And as I never tire of saying, because people in palliative care think they own death, most people will not be getting the high standards of palliative home care, but a worried and hard-pressed district nurse and GP without perhaps the confidence or the time to do a good job.

Another issue is the reality that patients and the people surrounding them might well not have recognised or been prepared to admit that the patient was dying, so they didn’t ask for the care that they really needed. Unlike palliative care, end-of-life care involves caring for people who have not had a clear diagnosis of a final disease like cancer, or the privilege of a careful assessment by someone who really knows and has taken the trouble to look at the patient in some detail, that they are reaching the ‘end-stage’ of something that may well be a lot vaguer. We run the risk of dying at home getting a bad name simply because people are not used to, don’t talk about and don’t always recognise dying when it’s happening at the end of a long phase of increasing frailty.

You can see the consultation on the NHS Constitution, which includes (fairly brief) discussion of the right to die at home at:

http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_108035.pdf

The fact that it’s brief probably means that it’s fairly ill-thought out too. There’s not a lot of sign that detailed thinking has gone into what they are really aiming at, compared with the fairly extensive material on waiting lists. What its inclusion points up, though, is the reality that end of life care is galumphing up the agenda as a political issue. For years politicians and community representatives have worried about waiting lists; perhaps now they are going to worry more about place of death. That’s probably good.