End of life care is not about palliative care
You’ll have gathered I’m clearing my December in-tray, because I’ve now got to the NCPC (National Council for Palliative Care) document published last November on the end of life strategy (for my own social-care oriented comment see 30th September 2008). This is a summary of the report, with some commentary about what the NCPC is going to do.
Looking behind the unexceptional material here, however, there is a very real problem. The whole point about end-of-life care, to me, is that we are at last going to work on helping people who are approaching the end of life in the most usual way, that is, they grow increasingly frail and increasingly unable to look after themselves. Palliative care, in contrast, is wholly concerned with people who have clear diagnosed and advanced illnesses.
An example is the five expert groups, which the NCPC document (£5 for six pages including three pointless pictures, one of them blown up to excess – they can only charge this because most people get it free), puffs as the centre of its ‘well-established policy group…that will enable this to happen’ (‘this’ is getting the policy implemented). These groups are illness-based, and so might be relevant to palliative care but cannot provide leadership in end-of-life care.
A-ha, but the answer to this is the older people group which is, as the policy wonks would say, ‘cross-cutting’ (this means it has an interest in all the other things as well; they almost say this but the elegant author was unable quite to bring him/herself to do it and so is self-defining as a not-policy-wonk). But here they are still stuck in the medical because its ‘current agenda is focused on…people with dementia and with multiple conditions’.
The whole point about end-of-life care is that we’re not concerned with any conditions but with the realities of social life for isolated and frail older people; their conditions are irrelevant. Until I see the NCPC setting up a group to concern itself with the social needs of frail people approaching the end of life, and putting some GPs, social workers and district nurses on it, I don’t think they’re going to be leading on this because they haven’t got the point of the end-of-life care strategy.
It’s the same in a lot of specialist palliative care. People seem to think that the warm words about how everyone in health and social care must be able to help people at the end of life better is the ship coming in for palliative care services. No, what the report is saying is that palliative care has made itself an over-medicalised irrelevance to most people approaching the end of life, and some of its skills need to be transferred pronto to all the ordinary health and social care professionals who are doing the job in community health, adult social care and care homes. That’s why care home, dementia, Gold Standards Framework and suchlike projects are flavour of the month.
NCPC (2008) Supporting the end of life care strategy. London NCPC (Briefing 16).
September 28th, 2009 at 9:38 pm
I chair Trinity user group and you are no different as you seem to exclude users. I am also on ethics committee of NCPC and we have members covering the areas you mention. How do you involve users of service?
September 28th, 2009 at 9:39 pm
Response from NCPC
‘We would suggest that if Malcolm Payne was going to make a serious contribution to a debate about what the role of palliative care might be in EOL care, he would have needed to demonstrate an understanding of the definition of EOL care included at 3.6 in the End of Life Care Strategy document. This refers to both the supportive and palliative care needs of individuals. Unfortunately such understanding is not present. He would also have done well to take account of paragraphs 3.8 and 3.9 that follow i.e. that the end of life phase may begin up to a year or two before its end and that its start may be identified in various ways:
• At the time of diagnosis of a condition which usually carries a poor diagnosis
• At a point where there is a deterioration in a chronic illness
• When an elderly person who is becoming increasingly frail needs increased help to continue living
It would appear that he is focussing on the third group to the exclusion of the first two. He also appears to ignore the likelihood that increasing frailty may be due in many cases to ‘clear and advanced illness’. Such conditions, single or multiple, are not irrelevant to provision of support and care to individuals in the end of life phase.
Palliative care (both generic and specialist) embraces physical, psychological, social, spiritual and practical support both before and during end of life. As such it has an important part to play in end of life care. We are disappointed that he does not acknowledge that. He seems to adopt a very narrow view about what can contribute to good end of life care and some might think that, until he can move on from that, it is he that has not ‘got the point of the end of life care strategy’.
On another point he is incorrect in his understanding of NCPC’s policy groups and should perhaps have researched them prior to comment. There are indeed as Payne puts it some “groups that are illness-based”. However these groups take a broad view and encompass expertise looking at all areas of relevance to both palliative and end of life care such as social care and as David Hart has already commented all involve users. He then goes onto expand:
“The whole point about end-of-life care is that we’re not concerned with any conditions but with the realities of social life for isolated and frail older people; their conditions are irrelevant. Until I see the NCPC setting up a group to concern itself with the social needs of frail people approaching the end of life, and putting some GPs, social workers and district nurses on it, I don’t think they’re going to be leading on this because they haven’t got the point of the end-of-life care strategy”.
However this too shows his ignorance of the NCPC policy group structure which is indeed cross cutting in approach – take our older people group focusing on frail older people – it is broad in perspective encompassing “GPs, social care and district nurses and the many old age experts too – and including older people and carers”. Comment surely should be based on a good understanding not conjecture and NCPC would welcome a conversation if he would like to gain more knowledge on which to base comment. Also to inform him that subscribers – and his organisation is one – get our publications for free to help with their learning.
Finally we wonder whether he may be in need of a little personal palliative care. Some Payne control perhaps? …let’s hope he has got over his pre Christmas grumpiness now and we wish him a belated happy new year too.’