NHS: Death at Home

Lord Dubs Excerpts

Thursday 8th November 2012 Lords Chamber

[Lord Dubs]

I join in congratulating my noble friend Lord Warner on having achieved this debate.

As a society we are not normally good at talking about death and in some areas it is still almost a taboo subject, so it is even more welcome that we can talk about it frankly and openly. We are talking about choice. There are many people who contribute to end-of-life care and they should be acknowledged—doctors, nurses, health care assistants, social workers and of course the family of the person who is nearing the end of his or her life.

I understand that there is controversy about the Liverpool care pathway. I do not know that much about it but I disagree with the noble Baroness. I do not think that it is such a reprehensible approach and there is a lot to be said for it but perhaps that needs to be debated on another occasion.

Of course it is important to enable more patients to die at home if that is their choice. We know that most people still die in hospital. The figures I have are 51% in hospital, 21% at home, 22% in a care home and 6% in a hospice. Although in commenting on the quality of the care, 92% said that a hospice provides excellent care, or their relatives said that. So when asking people about whether they would choose the place of death, only 44% expressed a preference but of these the vast majority said that they wanted to die at home.

My contention is that it is a matter not just of choice but of informed choice. It is very easy to say that home is the only place but I do not believe that it is quite like that. It may not always be practical to die at home and the hospital or residential hospice may provide the best care for people with complex needs and for managing pain. People need to be better informed about the reality of dying at home. If there is a large supportive family that is one thing but suppose there is not; suppose the person does not have a family to support them. How can they then die at home? It is not practical. It is understandable that, where there is a family, people want to be surrounded by the family as they reach death and normally that will be all right but that also puts a heavy burden of caring on the family, which may not be in the best position to do that. Although the onus must be on choice to enable people to die at home, I am just uttering a word of caution that it may not be the most appropriate decision for them. Indeed, if one is getting near death, at the outset, one may say, “I want to die at home”, but as one’s condition deteriorates, that may not, in fact, be the choice one wants to make, so there always needs to be the opportunity for people to change their minds. What is important is that all healthcare professionals should inform the patient of all care and treatment options so that the patient knows the consequences of any decision they make.

As most people die in hospital, most complaints about hospitals relate to end-of-life care. That is understandable, but that may not be the only matter for consideration. Funding is a problem, and one does not want a situation where people choose an option because it is free. Hospitals are free, I think hospices are free, but at home, financial support for care may be needs-tested and means-tested. One does not want a situation where people choose on the grounds of finance not on where they will be happiest and more at peace with themselves.

Dying at home, in a hospital or in a hospice should be an informed choice, and I would like the NHS Constitution to reflect that, but I add, as my noble friend Lord Warner did, that I feel that assisted dying should also be one of the informed choices. I hope that palliative care will not always be seen as an alternative to assisted dying but rather as complementary to it. In that way, patients would have a happier set of choices and a better path on the road to death.