An Open Letter to NHS England: the current approach to addressing uncertainty of prognosis during EoL is flawed
Dear NHS England,
The emphasis within your current publications in respect of prognostic uncertainties during end-of-life (EoL) is flawed, because it ignores the crucial issue of patient consent to interventions.
There are two distinct issues, here: one is that currently it is difficult to work out exactly how soon a patient is going to die, but the other is that not all patients are likely to consent to being subjected to any improved 'tests and observations' which might be developed to address that prognostic uncertainty.
Currently, I see work on improving the 'tests' which forecast how soon a patient is likely to die, and guidance which tells clinicians 'you must work out how close to death the patient is'.
But from personal experience, when my own mother was dying, she in essence was resistant to any medical intervention at all - she just wanted 'to be left alone to die, at home'. While such a patient, if in hospital, might be observed in a general sense even if the patient refused to allow things such as blood tests [which improved prognostic methodology might involve], if a patient is still mentally-capable and is determined to both die at home and to avoid most medical interventions, such a patient certainly wouldn't consent to 'tests which only improve forecasts of the precise time of my death'.
Personally, if I were dying, and I had 'sorted out my affairs', and I wasn't trying to extend my life with active treatment, I would accept pain relief but I suspect that I would refuse blood tests, etc, which had no benefit to me from my perspective. And dying 'isn't a spectator sport' - surely provided pain, etc, is under control, many people might be happy to have their loved-ones around them as they near death, but why would you want to be 'surrounded by clinicians' if you had chosen to die at home ?
So 'better prognostic testing re proximity to death' isn't going to tell you anything, if the patient refuses those tests: hence, your guidance should never imply 'you must carry out these tests' and instead the guidance should accept that with some patients, especially those in their own homes, there will always be a lot of prognostic uncertainty about 'how long there is left'.
This isn't something which can be 'solved by process' beyond the analysis I have presented about 'expected/unexpected death' at:
But it is a theme I keep coming across - that much EoL guidance seems to be based on what I could describe as 'the compliant patient', when it strikes me that if a patient knows he/she is dying, 'being compliant to suit the clinicians' might not be at the top of every patient's thinking.
The other theme I keep coming across - and which really angers me - is the 'distrusting family and friends one', which I touched on at:
http://www.bmj.com/content/350/bmj.h3181/rr
http://www.bmj.com/content/350/bmj.h3181/rr-2
None of the current guidance, seems to properly accept that if patients decide to die at home, their family carers become central to events in the way that nurses are central if the patient is in hospital - this has simply got to change:
http://www.bmj.com/content/350/bmj.h2877/rr
The 'deeper problem' is that most clinicians are strongly motivated by some sort of desire 'to do good and to help patients', and consequently they tend to struggle with 'self-destructive or stupid patients', whereas our law has now firmly settled on patient self-determination:
http://www.bmj.com/content/350/bmj.h2877/rr-7
This is hugely 'challenging' when you debate this type of stuff with clinicians - they hang on at some level to 'doctor knows best' but when my own parents were dying, my position was simply 'we should be doing what mum/dad wants us to do': the suggestion that a person would 'happily argue with a dying loved-one' seems truly peculiar to me.
Thanks Mike
Great piece!!
Sylvia (Netherlands)
Verstuurd vanaf mijn iPhone
Dear Mike,
We have to deal with this problem in Nursing Homes on a regular basis and I agree with you 100% , Dying is not something most people (clients or relatives ) find easy to talk about never mind plan for.
An hollistic approach to palliative care is very difficult to achieve in these circumstances.
Thanks Sylvia and Gerald,
It seems I'm not alone in having this concern. I checked back on this piece to get its web-link, as I am about to point NHS England at it (more specifically, I am about to send an e-mail to Bee Wee, NHS England's EoL lead, pointing her at it) and I can now add that it very rapidly got a couple of comments.
Gerald's 'most people don't talk about death' is something well understood - I wrote about that on BMJ a couple of years back:
http://www.bmj.com/content/347/bmj.f4085/rr/652862
but I'm not sure that is something which can be easily overcome.
However, I keep 'discerning' a sort of 'idealised world' at the heart of contemporary end-of-life guidance, within which everyone does know what is going on - that leads to terrible confusion, especially among professionals who are only infrequently involved with EoL situations (for example, I feel certain that police officers have very little idea of how complicated 'communication' between patient, live-with relatives and GP/nurses is, when patients are dying at home) IF those relatively inexpert professionals 'assume the [idealised] guidance matches real-world behaviour'.
As I wrote in the BMJ piece above:
'When I read, as someone with a doctorate in chemistry, contemporary end-of-life guidance and policies, I see a marked reluctance to properly incorporate both clinical uncertainty and patient self-determination, combined with an 'attitude' that professionals are trustworthy but laymen are not trustworthy: throw in some added complications involving concepts such as 'patient confidentiality', a fairly widespread unease at 'talking about dying', a common interpretation of 'safeguarding' which thwarts the patient self-determination so fundamental to the Mental Capacity Act, etc, and at the moment behaviour sets for EoL home
death seem to assume an 'idealised model' which is very different from the reality of many EoL home deaths. The guidance and protocols, should be based on the reality of EoL at home, accepting the many complications, and not on 'a guidance-writers' wish-list of how EoL at home should work in a 'perfect and much-simplified world''.'
There is some new 'guidance' for end-of-life which was published yesterday, 'Ambitions', and you can find it at:
http://endoflifecareambitions.org.uk/
I have only read the shorter of the two pieces so far, but its 'ethos' is in my view very good.
I must admit that my assertion in this piece (The emphasis within your (NHS England) current publications in respect of prognostic uncertainties during end-of-life (EoL) is flawed, because it ignores the crucial issue of patient consent to interventions) isn't something I can actually prove: I had assumed, because I see an over-emphasis on clinical factors, and comparatively little emphasis on how complex it all becomes if patients 'refuse to be measured', in most of the stuff I read, that I had taken it for granted that NHS England shared that 'approach'.
Perhaps NHS England doesn't think that things like improved tests and better sharing of known information, is the major part 'of the solution': perhaps NHS England shares my position that the thing we need to work on the most, is patient-clinician-family integration, and everyone closely supporting the patient, working together without this intrusive professional-lay 'division'. I might find that, in the longer Ambitions PDF, when I read it.
But if NHS England is with me on this, I still believe that far too many professionals are not, based on what I keep reading.
A bit from the 'Ambitions' webpage (the link is above):
Welcome to the website of the National Palliative and End of Life Care Partnership.
On this site you will find the Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020. We have also created a downloadable slide-deck that presents the Partnership and the ambitions in an easy to use pdf format.
Both of these resources are for you to share. We will in future add to the website with case studies and material from all our partners.
New ambitions raise the bar for end of life care
National framework for action urges local leadership to be at forefront of improvement in end of life care.
The National Palliative and End of Life Care Partnership, made up of statutory bodies including NHS England, the Association of Adult Social Services, charities and groups representing patients and professionals has developed a framework for action in making palliative and end of life care a priority at local level.
"We are sharing this framework for action with local leaders in every community whether they work in the statutory, private or voluntary sectors. We expect them to plan and act, using this framework, so that these ambitions can be brought into reality."
"Death and dying are inevitable. Palliative and End of Life Care must be a priority. The quality and accessibility of this care will affect all of us and it must be made consistently better for all of us. The needs of people of all ages who are living with dying, death and bereavement, their families, carers and communities must be addressed, taking into account their priorities, preferences and wishes."