Mike's Cheeky Blog: ‘We talked about you a few weeks ago!’

Just some thoughts, only loosely connected, about Twitter last week – quite a few interesting things were raised. If there is a 'theme', it is about the differences between the ways that NHS users and NHS staff 'tend to think'.

Dr Mark Taubert pointed me at a ‘Palliative Care journal’, and suggested that I might try submitting a paper to it, which would be peer-reviewed prior to publication: following up on that is nowhere near the top of my list of ‘things to do’. But I looked at the Twitter page of the journal @BMJ_SPCare and downloaded a couple of papers, one of which was ‘Patient values informing medical treatment: a pilot community and advance care planning survey’ by S Milnes et al (Milnes S, Corke C, Orford NR, et al. BMJ Supportive & Palliative Care Published Online First: [‘please include Day Month Year’ – Oct 14 2017 I’m assuming] doi:10.1136/bmjspcare-2016-001177).

Now, to be fair, the locations of the authors include Australia, New Zealand and England – so to an extent they will be writing about ‘generalities’ while I will be writing here about ‘England specifically’ (in other words, my position is informed by English Law, but theirs isn’t).

I’m going to analyse just two extracts from the paper.

‘To help doctors and other health professionals participate in patient-centred, values-based discussions, it is important to identify how community-based populations consider and prioritise certain values for living well.’

I would have written something like:

‘So that healthcare systems can be designed to offer the services which are most-wanted by patients as a whole, and so that health professionals can start individual patient-level discussions with an understanding of the things which patients will most-often prioritise, it is important to understand what patients typically want’.

The second extract from the paper, is:

‘Decisions regarding patient care should include consideration of patient’s values to inform goals of care.8 This is the basis for shared decision-making.2 9 Unless patients communicate these values, doctors generally prioritise prolongation of life10 through care based on chance of cure or short-term benefit.4 11 12 In contrast, previous studies with patients suggest that important considerations in these decisions are maintaining dignity, relationships and independence.4’

That isn’t something that I would ever write – it isn’t what our English Law describes, and it doesn’t explain ‘who actually makes which decisions’. For brevity, I will only consider mentally-capable patients here: in which case the patient explains ‘my [clinical] problem’ to the doctor, then the doctor offers whichever treatments might be clinically effective and which are available to be offered (for example, you can’t get a treatment on the NHS, if the NHS has decided it is too expensive to offer), then the patient decides to accept an offered treatment, or to reject all of the offered treatments. ‘Goals of care’ are the patient’s objectives and become the doctor's objectives once the doctor has been told what they are – and while an individual patient’s ‘values’ are what the patient ‘uses’ in reaching that desired objective, the doctor doesn’t actually need to understand the ‘values’: the doctor only needs to understand the patients decisions, and to be satisfied that the patient understands the clinical consequences of the decisions the patient is making.

I can entirely understand WHY doctors like to understand ‘why patients decide as they do’ - but, especially if as a patient you suspect your clinicians will ‘not like’ the decision you make, it can be problematic for patients if you ‘explain your reasons, as opposed to simply describing your objectives’.

I suppose that put simply, my position on papers such as that one, can be compressed to:

‘Work out the things which are important to most patients, and make sure that the NHS offers as many of those things it can afford: and then, at the level of each individual patient, just ask the patient what she wants to happen, and KEEP ON ASKING for consent to interventions’.

I also ‘stumbled across’ Twitter Polls when one was mentioned in a tweet: a few minutes later, I had posted my own first-ever Twitter Poll – so I’m keen to see how that goes! My poll is at:

https://twitter.com/MikeStone2_EoL/status/919195401898680321

It is this (5 days left to respond, if you want to):

An 82 years old man is diagnosed as terminal. He and his 79 years old wife 'invite clinicians to help while he dies'. Does that invitation of itself, imply that if he loses the ability to make his own decisions, he wants the clinicians, and not his wife, to make them?

You can choose from these two answers:

Yes it does

No it does not

One day last week, I was talking to a nurse from a local Hospice, and she told me that she likes ‘ReSPECT’ because it is helping to make more ‘conversations during dying’ take place: I’ve been tweeting on the theme of ‘why is ReSPECT more successful in doing that than other recent guidance?’ - we need those conversations to happen, but as some readers will know, I dislike ReSPECT for other reasons.

I’ll return to Dr Taubert’s suggestion that perhaps I should try to get something peer-reviewed published, and I’ll explain why I’m not particularly bothered that I don’t have peer-reviewed papers of my own to point at. I’m not looking for career progression, and I’m not looking for research grants. I’m in a group which can be described as ‘lay people who are trying to alter – to improve – the NHS and NHS behaviour’: I’ll call this group ‘lay NHS campaigners’.

Many lay NHS campaigners, will tell you that ‘I’m told that my talks are powerful – but, after years of doing this, I can’t see much change in the NHS’. What we campaigners want, is to be EFFECTIVE.

I do not have a bunch of peer-reviewed papers. But there are quite a few ‘senior NHS people’ who, when I send them e-mails, tend to get back to me: I assume, therefore, that those people, many of whom ‘are in a position to be influential’ (as well as often being crazily busy!) , see at least some validity, in the points I make in my e-mails.

And, I recently suggested to a consultant in Palliative Care, that a recent paper by a different consultant in Palliative Care was well-worth reading. The reply to me was ‘I will read it, I know that consultant well. In fact we talked about you a few weeks ago!’.

This makes me think, that however imperfect my chosen method/s might be, there are some senior NHS people who are aware of, and who are probably considering, my analyses – I’ll take that, over a bunch of peer-reviewed publications, any day!

FOOTNOTE: If my non-peer-reviewed publications were attracting citations, that would encourage me – but peer-review of itself, no, I’m not bothered.

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