NHS: Death at Home

Lord Low of Dalston Excerpts

Thursday 8th November 2012 Lords Chamber

[Lord Low of Dalston]

My Lords, I, too, thank the noble Lord, Lord Warner, for tabling this important debate. It could not be more timely, in the light of the Government’s plans announced this week to strengthen the NHS constitution. In life, we are largely trusted and enabled to make decisions for ourselves. There is no reason why people should be denied this right and responsibility when they are dying. As we have heard, surveys indicate that there is a large gap between where people say they would prefer to die and where they actually do die. One survey on behalf of Cicely Saunders International found that 60% of people would prefer to die at home, but in 2010 only 21% actually did so, with 53% of people dying in hospital. This is not a slight on hospitals and their dedicated staff, though misplaced ethics of keeping people alive in the teeth of the inevitable and conservative protocols on pain relief for fear of being accused of hastening the end mean that palliative care is not always all that is claimed for it. As Prue Leith so movingly testified in the Spectator article of 27 October, rather it is a comment on the benefits of dying in your own home. At the end of life it is often unquantifiable things which can greatly increase somebody’s comfort—being in your own surroundings with those you love—though, again, the importance of good palliative care cannot be overstated. The latest figures for 2010-11 show that whereas just one in five people nationally died at home, a third of those receiving specialist palliative care did. This demonstrates the importance of specialist care in enabling people to die at home with appropriate support and the variation in what is available in different areas.

Of course, some people would prefer to die in hospital. For others, with complex care needs, it may be impractical for them to die at home. However, when someone does want to die at home, we must strive to do all we can to respect and act on their wish. Specifically, we need to remove the barriers that prevent patients from dying in their preferred place of care: patients’ treatment wishes not being recorded, poor co-ordination of information, inappropriate emergency admissions, lack of effective discharge from hospital, and not having a specialist palliative care team in place.

With this in mind, I greatly welcome efforts both by this Government and their predecessor to improve access to good quality, patient-centred end-of-life care, as set out in the End of Life Care Strategy. Since the publication of the End of Life Care Strategy in 2008, there has been considerable progress in identifying patients nearing the end of life, planning for their care and recording their medical preferences. I am particularly impressed with Coordinate My Care, the electronic end-of-life care register to which the noble Viscount, Lord Craigavon, has just referred, and which was piloted in Sutton and Merton and is now being rolled out across London. Coordinate My Care records patients’ end-of-life preferences and can be accessed by all relevant professionals. The tool ensures that patient information is shared effectively. Alongside this, it prevents unnecessary hospital admissions and allows patients to have the kind of death they want by enabling healthcare professionals to deliver the level of medical intervention decided by the patient. Preliminary audit shows an increase in the number of patients dying in their preferred place of care. Indeed, the tool appears to have had quite a dramatic impact, with people dying in hospital falling from 66% to 21% in the pilot areas. If the success of the scheme is confirmed, I hope that it can be rolled out across the NHS.

That brings me to the NHS constitution and the proposed changes announced this week. On this, my glass is half full. I welcome changes to ensure that patients and, where appropriate, families and carers, are consulted on end-of-life care decisions. I also welcome the underpinning of compassion, dignity and respect as central values of the NHS. However, the constitution could go further. Specifically, the proposal that people should be given information about test and treatment options should be extended to ensure that patients are made aware of their care options, including the use of patient preference tools. This could encompass advance care-planning tools, such as Coordinate My Care, which allow patients to state their treatment preferences and a preferred place of care, and to decide in advance, with legally binding effect, that they do not wish to receive treatment. Good care and treatment go hand in hand, and this should be reinforced by the constitution. The development and provision of end-of-life care has come a long way in a relatively short space of time. The efforts of all involved should be applauded. However, we can do more and should do more in the knowledge that choice and control are central to ensuring dignity in dying.