2 significant reports about Last Years of Life have just been published
Two significant new reports about Last Year(s) of Life/End of Life have just been published.
The shorter piece, is a summary of investigations into how things look from the user end, by National Voices. The piece is called 'Every Moment Counts' and you can get it from:
It has got a very interesting foreword written by Dr Bee Wee (National Clinical Director for End of Life Care, NHS England). Bee explains that (I've just decided to include the full foreword below):
"It tells us, unequivocally, what person centred care means from the point of view of someone approaching the end of life."
The other report is published by the Choice in End of Life Care Programme Board, and is 'What's important to me. A Review of Choice in End of Life Care'. The report is in the form of a full report, a summary report and some 'add ons', and it contains 'advice to goverment' (in other words, it contains recommendations'). The material can be found at:
http://ncpc.org.uk/news/choice-review-published
There are a few strange things in the report - for example, these are consecutive in the summary report:
'each person in need of end of life care has a named responsible senior clinician who would have overall responsibility for their care and their preferences; and
each person in need of end of life care is offered a care coordinator who would be their first point of contact in relation to their care and their preferences.'
This Care Coordinator role is a new one, to me, and very interesting (because it can be a layman, such as a family member, or a professional), but while [as a potential patient] I do want a senior clinician to have overall responsibility for the [quality of] my [clinical] care, I certainly DO NOT want that person to have 'overall responsibility for my preferences' - I AM RESPONSIBLE FOR MY PREFERENCES !
Having accepted that the patient is 'responsible for' his or her own preferences, so that isn't something the senior clinician 'can control', what must the second part be telling us about the role of the 'care coordinator' ? Presumably, it means that if as a patient I decide that a relative of mine (a son, spouse, etc) is 'my care coordinator', that other people (for example, 999 paramedics and A&E clinicians) will be told to 'believe what my relative is telling them, about my 'care preferences'.
Except that this is using a named individual (whereas my Core Care Team approach uses 'get the patient and everyone closely supporting the patient in an ongoing way [the live-with relatives, GP, regularly-attending district nurses] to talk to each other properly so that all of those people 'understand the situation', and THEN TELL EVERYONE LESS CLOSELY INVOLVED 'to believe anyone who is part of the Core Care Team), this seems very close to my Core Care Team approach for LYoL/EoL.
There is something unclear [at least to me] about EPaCCs and Care Plans, in the context of suggestions that patients and perhaps relatives should be able to inspect and alter/update these things. I have sent an e-mail asking for clarity around that, and if I get an answer, I will probably post it in this discussion thread.
From above: Dr Bee Wee's foreword, which I like a lot, is:
Dame Cicely Saunders, the founder of the modern hospice movement said:
"You matter because you are you, and you matter to the end of your life."
As we commemorate the tenth anniversary of her death, this quote remains as relevant as ever and must remain a guiding light for us. We all face the prospect of dying one day. Most adults, and many children, experience the loss of those dear to them well before that happens. This is an intensely personal human experience. Every moment counts because, once passed, it can never be regained.
This narrative is an important milestone. It has been carefully and painstakingly produced under the leadership of National Voices working in partnership with National Council for Palliative Care and other organisations. It tells us, unequivocally, what person centred care means from the point of view of someone approaching the end of life. We use this narrative as the centrepiece for NHS England's Actions for End of Life Care.
As a front-line clinician, I know that in the real world, it is difficult to achieve perfection for everybody every time. There can be a mismatch between what services can offer, what professionals hope to achieve and what the person, and their families, carers and those
close to them seek or expect. Finding out what really matters to them - you can almost 'hear' the voices in this report - has to be a fundamental starting point for all of us, and establishes a proper partnership in care.
Everyone's experience is unique: one size cannot fit all. This narrative reminds professionals and volunteers to stop, think and respond in a way that is, and feels, honest and personal to that person in front of them. It helps service providers and commissioners to look at the service they are entrusted to deliver through the eyes of the person who needs that care.
Dr Bee Wee PhD MRCGP FRCP
National Clinical Director for End of Life Care, NHS England
Consultant and Senior Lecturer in Palliative Medicine, Oxford