NHS: Death at Home

Baroness Greengross Excerpts

Thursday 8th November 2012 Lords Chamber

[Baroness Greengross]

My Lords, I congratulate the noble Lord, Lord Warner, on initiating this debate. I agree with the points that he made and I am very sorry to have arrived a couple of minutes after he started. I hope noble Lords will forgive me. Most points have been made so I will be very brief.

We have possibly all in this House had experience of people dying well and people dying badly. My most distressing was perhaps some time ago with a relative dying of cancer in an open ward of a hospital. There was a lack of access to loved ones, a lack of privacy and dignity and an abuse of human rights that today—because we have made progress—would be recognised as such. There are still improvements that we have to achieve if we are to get this right.

More recently I experienced wonderful palliative care at home for an elderly woman. A team visited her eight times a day, sometimes through snow and ice, to ensure that she died well. This was amazing and showed what can be achieved. Even more recently someone else who was dying experienced bed sores and ankle swelling just before dying and the palliative care team were unable to give adequate morphine because they were still frightened, after Harold Shipman, of this being interpreted the wrong way. We still have improvements that we must make sure are made because the right to decent, compassionate end-of-life care is something to which we all aspire and must achieve.

Sadly, end-of-life care has in some respects become a bit crisis-driven and responsive. We ought to be able to plan it so that this is not the case in future. The National Bereavement Survey suggested that levels of dignity were highest in hospices and lowest in hospitals, as we know, but that improvements still needed to be made in certain areas. I agree with the noble Lord, Lord Low, that the gold standards framework for recording people’s wishes, preferences and priorities is very important and should be adopted. I was a signatory to a letter only this September about the proposed NHS mandate, which, sadly, made no reference to end-of-life care. Many people signed that letter. It is appalling that this issue is not higher on everybody’s agenda. However, we have to consider certain issues in relation to this matter. Physicians are still not adequately trained as regards end-of-life knowledge as well as end-of-life care. They will not all be actively involved in this sort of care but they should all know more about it, not just the specialists. We need to develop and standardise the systems for recording people’s wishes. There is a pressing need to ensure that information follows patients across different settings because people often want to die with relatives and it is still difficult to get all the information in the right place at the right time. We need to develop the system for recording and establishing the best interests of patients. We also need to introduce better training for dealing with grief among the family and other parties.

The noble Viscount, Lord Craigavon, talked about the lack of knowledge that people have about the Mental Capacity Act, advance decisions, lasting powers of attorney and the legal implications of going down the road of using any of those. The public need to be much more aware about these matters. Despite concerns about confidentiality and privacy, which I think can be overcome, we need a national register which is accessible and ensures that people’s wishes prevail. I agree with the noble Lord, Lord Warner, on that. Of course, it is essential to talk to the family but the person’s wishes must prevail.