Margaret McCartney: Innovation isn’t the same as evidence
BMJ 2016; 355 doi: https://doi.org/10.1136/bmj.i6108 (Published 21 November 2016) Cite this as: BMJ 2016;355:i6108All rapid responses
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Creativity cures crisis. So let's be visionaries and missionaries, who value creativity and view crises as painful, but productive, prerequisites and preludes to progress and success. Intimidating but stimulating, and aggravating but animating, our copious social, political, financial, and scientific crises are cris de coeur for creativity and vivid, viable overtures to invention. Innovation deserves a standing ovation.
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I always enjoy reading the responses from Susanne Stevens, and on the whole we seem to put forward similar views - although I consider Susanne to be a better and more expressive write than I am. Susanne is correct is to point out that I persistently highlight the lack of integration between the professional and 'family' carers who are all trying to support end-of-life patients.
But, even with Susanne's 'correction', I wish to comment on her 'It is named in the article as Continuing Care Plan not by the old synonym referred to by Michael'.
There are bucket-loads of different terms being used during EoL, sometimes with different terms meaning the same thing, and at other times with the meaning of a term being so vague as for it to mean different things to different people. The same label meaning different things to different people is problematic - different labels for the same thing is merely confusing and irritating.
Coordinate My Care is not a simple 'thing' - you can find on its website the following:
'The content of CMC’s Urgent Care Plan has involved extensive discussion between many clinicians. The Urgent Care Plan covers the SCCI1580 End of Life Care data standard, including demographics and GP information, but considerably extends it. NHS England’s Healthy London Partnership are building new standards for End of Life Care data and for urgent care service interoperability via a generalised ‘Crisis Care Extract’. CMC is closely involved in this work. In addition to End of Life Care patients, the CMC service coordinates care for many patients with a wide range of long term conditions.'
The SCCI1580 EoL data standard referred to, is indeed a core-standard for EPaCCS, and it contains this wording:
'This information standard specifies the core content to be held in electronic palliative care co-ordination systems (EPaCCS) and supports NHS England's objective to increase the use of technology to help people manage their health and care. All Electronic Palliative Care Co-ordination Systems (EPaCCS) must comply with this information standard .'
Another of my objections to EPaCCS, is that I have some 'issues with' the SCCI1580 core standard (see for example ref 1, where I objected to its requirement that a 'main carer' has to be identified).
But, I repeat: none of this 'planning' and 'database' approach, is entirely satisfactory. It is very difficult indeed, to get 'the conversation about the actual death' started. Often, family carers are with the patient when nobody else is present. And if your terminal father explains to you one evening 'that I've really had enough of this - if I have a cardiac arrest, then I definitely do not want anybody to attempt to resuscitate me', the 'you have been told'. Even if you father arrests before this instruction has made its way into 'the records', and despite your father's GP not having yet been told of the decision directly by your father, you know - you have been told, it was your father's decision to make, and so far as I'm concerned, you must follow his decision.
I had a similar conversation with my dying mother, when she refused to take prescribed medication - being told (in my case, not that my mum was refusing CPR, but that she wanted to be 'left alone {in the 'no treatment/interventions' sense} to die') is 'very upsetting' [even if you had already worked it out] but it leaves you in no doubt: and I suspect that immediately after the conversation, 'the records' isn't likely to be what either patient or family carer is thinking about.
Ref 1 http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj...
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My apologies. I have just realised I gave the wrong title re the proposal for care of elderly and frail people, in my previous r.r. It is not "Continuing Care Plan" but "'Co-ordinate My Care' - Patient Centred Care in Urgent Situations". Thank you.
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Michael Stone consistently points out the flaws which are likely to arise when there can be over reliance on shared written records by teams of health workers. It may be useful to refer to the document published by East London NHS , City and Hackney which also covers NW Central London and parts of Essex. 'Transforming Services Together'. Published in 'Pulse' Spring Ed. of Patient and Public Involvement (of which there was remarkably little ) by City and Hackney CCG. This includes a section on improving care at home and end of life care. (Section 3). It is named in the article as Continuing Care Plan not by the old synonym referred to by Michael.
The document highlights that massive changes to working practices are envisaged involving less reliance on GPs and more team working. (On 18th Nov, coincidentally there was an article in THEBMJ 'Fears Raised over Plans to cut back GP and A and E care in East London'). This document goes into great details and highlights the poor quality of services health-workers across the board are able to provide. The plans were drawn up without proper involvement of GPs or the public according to the Kings Fund and the BMA (see Pulse med mag article). However referring to Michael's concerns there is likely to be even more chaos before/if these plans become a reality. A constant theme is the idealistic idea that shared records will do the job. Of course they will help but they can never replace the knowledge of those who care for loved ones. There is a mention that relatively few people have made Advance Directives but no inclusion in the plans to encourage people at an earlier stage in life to make one. It is shocking to leave the care plan to a stage when people become frail and/or elderly. No mention of advocates. There is no mention of the rights of carers to decide where there are disagreements with health workers about for example. admissions to hospital.
Cynically there is right at the end of the document highlighted in red a point to effect that 'to avoid 'fall out' (which supposedly means losing support for the proposals) it is vital to include 'caveats' to the planned changes.
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One of the eight innovations mentioned in Dr McCartney's article is Coordinate My Care, which is apparently to be 'rolled out nationally'. I had been under the impression that CMC was simply the 'implementation of EPaCCS in London' and that what was being 'rolled out' was implementation of locally-designed EPaCCS.
So I browsed the Coordinate My Care website last week, and asked the CMC people some questions, which are so far [but it has only been a few days] unanswered. The main question amounted to 'patients must consent to being on the CMC system - when you have just been told you are likely to die within a year, you are probably not in the right frame of mind to form an opinion about the CMC system itself, so the system's fields and guidance notes should be available somewhere online for the public to inspect: I couldn't find them, please point me at them so I can look at them and form an opinion'. I have a problem with CMC, and I have the same problem with every other EPaCCS I have examined: this approach to end-of-life, does not seem to me to accept the realities of 'death at home'. CMC and other EPaCCS do not properly address issues such as the very real possibility that conversations between the dying patient and a family carer, might result in the family carer being more up-to-date with the patient's decisions and 'wishes/preferences' than the electronic system is. They do not address the crucial issue of whether 999 paramedics and A&E staff, should default to believing what family carers tell them (see ref 1). And, probably fundamentally, all such records-based approaches seem to be predicated on an assertion that simply by reading some records in an emergency, clinicians who were never previously involved in the ongoing care of the patient, can defensibly make 'best-interests decisions': I disagree, because in the same way that innovation isn't the same as evidence, reading a few notes written by other people is not the same as possessing the in-depth understanding of a patient's individuality which best-interests decision-making requires. Setting aside that it is usually the family carers who best understand the patient's 'wishes/preferences', we should be encouraging patients to make Advance Decisions (refs 2 & 3) precisely to prevent people such as 999 paramedics and A&E staff from making best-interests decisions, as far as is possible - but CMC seems to be trying to 'equip emergency care staff to make decisions' instead of trying to forcibly promote 'get the decision from the patient in advance if at all possible, and then just follow the patient's decision' principle.
So, I have serious reservations about the innovation I feel I am qualified to discuss, and I see it as seriously flawed.
Ref 1 http://www.bmj.com/content/355/bmj.i5705/rr-15
Ref 2 http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj...
Ref 3 http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj...
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Re: Margaret McCartney: Innovation isn’t the same as evidence
Dear Editor
Innovation isn’t evidence .. agree
May I proffer a couple of points from someone with first consultant post 1.4.1978 and now 4 PAs and enjoying the face to face practice of clinical medicine:
1. Re Low intensity telemedicine. I went to an RSM sponsored telemedicine event and concluded that data transmission from devices was potentially handy but that consultations could equally effectively be done by plain old telephone.The enthusiasts invariably factored out the essential truth that body language guides an initial consultation n times better than a mere exchange of words.
2. Fig leaf: I noted when visiting an excellent care home that on some occasions the decision about referral to A&E might have been swayed by the fig leaf of a tele consultation. “Might have” is the operative wording because all the referrals resulted in definitive tertiary care interventions that the out of hours GP rightly proposed. Part of the cost of medicine it seems is the anxiety about legal consequences of being less than OCD about guidelines.
My experience has been that patients and relatives do not sue you if you have shown unalloyed empathy, concern and expertise.
RM Sherratt
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