They Just Can't See It

Before I move on to commenting about the issues around 'inevitable uncertainty' (and how that is often very badly handled by professionals who follow overly-simplistic 'protocols', which 'seek certainty'), I'm going to add/ask a question.

What methods of 'campaigning' seem to work the best ?

There must be a fair few people who read this website, who are trying to get something about healthcare changed - beyond the loose 'introducing more dignified care'. I know that Rochelle Monte is active in trying to improve the situation for home care visits, and I have seen other 'campaigns'. But does anybody have any feedback, about which methods seem to be successful in achieving change ?

I ask, because I don't think my own method, is 'mainstream'. I have objections to 'guidance/mindset' and I tend to adopt the simple method of, if I come across something which strikes me as either legally wrong, or 'perspective-biased', sending an e-mail to the author 'complaining' (this can be to individual authors, or to organisations). I think - because my issue is with high-level guidance - that my method of contacting the authors of such guidance, is fairly inevitable as an approach. But I have been known to wonder, how many other people are adopting the same approach as me - and a while ago I asked one of the people I pester at NHS England, and I've just received the reply:

'The answer to your question is - not many, at least by email. There are a number who join the various groups and committees and bring quite formidable analytical skills from a non-clinical perspective to the table - incredibly useful for generating discussion. You do the same, by email - I guess the difficulty you might encounter is that many professionals receive such huge volumes of email - most of which are task-orientated - that there is seldom time to sit back and engage in thoughtful discussion by email. This is particularly true of clinicians - we spend most of our time 'on the road' as it were - doing clinical work, participating in meetings, etc. - which means that our desk time is limited, and has to be devoted to phone calls, writing papers/reports, commenting on papers we're sent and dealing with emails. In no way does this devalue anything you say - it's just having the time to read, reflect and respond thoughtfully is not easy.'

Now, there are many 'themes' in there, and I was already aware of all of them - in particular, senior NHS clinicians seem to be 'leading for various national topics' on a part-time basis: so the NHS England lead for dementia care, might be working as a consultant clinician for most of his/her time, and also fitting in the NHS England role. This does make these people 'very busy indeed'.

But if these 'national leads' are too busy to enter into much discussion, 'who is talking to who in depth ?'. If someone is upset by some NHS personal experience, and joins a group campaigning on a specific issue, I'm sure the members of the group talk to each other a lot - but they probably already understand each other, and share a common perspective. What you need to do to make progress, it seems to me, is to get people whose 'starting perspectives' differ talking to each other: you don't need nurses talking to nurses, relatives talking to relatives, and doctors talking to doctors - you need to somehow get patients, doctors, nurses and relatives all talking to each other.

Because in my view, my NHS England correspondent was definitely right about this, which I've altered a little (I used to swap a lot of e-mails with someone at the Department of Health, and I'm sure that we each understood more because the other 'looked at issues differently sometimes'):

'There are a number of laymen who join the various groups and committees and bring views and arguments from a non-clinical perspective to the table - incredibly useful for generating discussion'

But, there is a slight problem, with laymen who embed themselves inside a 'working group' tasked with 'proposing a solution to some specific problem' - it is the equivalent of 'cabinet responsibility' where everyone eventually 'gets behind the proposed solution' [until many years later, when some people will say 'well, some of us felt sure it couldn't work, even at the time']. I do have something of an issue, with 'discussions behind closed doors', and then 'the presentation of a united front around the issue' without people ever being able to see the disagreements along the way. I think that people should be able to see 'the raw discussions' - not just 'the final proposals'.

WHAT CAN BE KNOWN ?

Things which have happened, might be 'knowable'. But even some of these, are not 'knowable' 'universally'. If two people talk together, then one becomes unconscious before any record or dissemination of the conversation has been made, the only person who 'knows' about the conversation is the remaining conscious participant.

Records of past events, can exist and be read, but how does a reader 'know' the record is accurate ?

Things like 'the meaning of a multi-party discussion' can be disputed after the event by the participants: if there is a dispute about 'what the words meant', does anybody know what the words meant ?

Some present things, can also be 'unknowable' - in my end-of-life debates, police officers clearly 'want to know why a deceased person died', but often that simply isn't 'knowable' at the time.

Future events, are typically significantly 'unknowable'. Things such as the outcome of a cardiopulmonary resuscitation attempt, are so vague, that the term 'unknowable' fits them well. If you are aged 80, then the answer to 'will I be alive in 5 years time ?' isn't quite the same as if you are a healthy 20 yr old, and you ask yourself the same question.

There is also a problem, in that 'you can only know about, what you can see', where I'm using 'know' more in the sense of 'properly understand'. And people are 'perspective blind' to quite a lot, of 'what is in front of them'.

Why does any of this matter ?

In terms of my own 'stuff', mainly because the guidance currently being published, downplays 'uncertainty', and as a consequence would lead 'inexpert professionals' to fail to understand how complicated the real-world situations which other professionals are involved in, really are. For example, police officers are not routinely involved in end-of-life at home, but are involved sometimes: the 'theoretical situations and behaviour implied by current EoL guidance' which might be read by a [diligent] police officer, are nothing like as complicated as the real-world interactions between patients, GP, family and nurses.

I will recount a story I was told by someone, who I will call 'Tina' here.

TINA'S STORY

Tina's mum, who was in her 90s but 'fairly healthy', was rushed into hospital - the problem was both sudden and acute, and it would probably be fatal if left untreated. The doctor - I'll call him 'Dr Jones' - told Tina's mum (Tina was present), that there were two options. They could try to operate, but the surgeon thought she would not survive the operation - mum didn't fancy that. Or, he could do nothing - an option which he presented as 'Or we could just do nothing, and make you comfortable - but if you chose that, you will never leave this hospital'.

Mum went for the 'no active intervention' option, and died a week or two later.

One of Tina's sisters, who lived in a different part of the country, turned up at the hospital the next day. The sister wasn't happy, and wanted her mum to be actively treated - Dr Jones said 'it is now too late to attempt active treatment'. The sister then accused Tina - who, because she lived closest to her mum, was the sibling 'supporting her mum day-to-day' - of 'selfishly wanting our mum to die, because you are fed up of caring for her' (my phrase - but 'makes the point' here). Tina and the sister are no longer on speaking terms - and Tina has not explained this row to various other relatives, so she doesn't really like 'talking about her mum's death 'openly''.

Tina also has - looking back - another issue. At the time, Tina knew that the doctor's 'but if you choose that, you will never leave the hospital' meant 'if you choose no active treatment, you will die': and AT THE TIME, Tina felt sure that her mum also understood that. But WITH HINDSIGHT, Tina 'isn't 100% certain' - so with hindsight, Tina thinks the doctor should have made it clear that 'no active treatment means you will die' to her mum, so that her mum definitely understood the choice she was making. What Tina sent to me (words copied directly from the e-mail) was:

'I found it quite a comforting at the time that those words were used, but only because I knew that my mum had capacity and understood the implicit message, in the same way that I did.

However, since her death I have wondered whether she should actually have been specifically told that by not providing any active treatment she would die in hospital, because I would not want this approach to be used with someone who would not understand the nuances of the 'nice words'. My feelings of guilt were based on the fact that perhaps my mother hadn't realised the implications of what the doctor said and I should have asked for a more honest statement - what if she had in fact wanted to be treated or risk the operation, that would have been her choice.'

So what seemed like 'soft and 'kind' vague words from the doctor to her mum' at the time, now WITH HINDSIGHT 'leave Tina with an ongoing slight concern, that perhaps her mum didn't understand what the doctor meant'.

Mum was put on the Liverpool Care Pathway, which wasn't realised by Tina, until a family friend (who was a GP) worked that out, and told Tina.

This type of thing, is really problematic for end-of-life [especially for patients who are in their own homes]: almost nobody is keen to discuss the more 'emotive' things [such as the actual death itself] and consequently it is really easy to make false assumptions 'about why people are doing things'. You simply cannot have good joined-up patient support, if the situation is 'very information poor' - and making assumptions in information-poor situations, is a recipe for really bad behavior.

So, 'who knows what' in Tina's Story ?

Mum: mum might have understood that by not having the operation, she was in effect choosing 'to die as comfortably as the hospital was willing to arrange' - but we don't know for certain. I suspect - but I can't be sure - that the medics didn't really want to operate not because (as some people would be suspicious of) of 'age discrimination', but because of what doctors call 'frailty' (a reduced ability to withstand stress, which is often found in very elderly people [even if 'they just outwardly look old, not ill']).

Tina: the interesting thing re Tina, is this 'with hindsight was I wrong to not make Dr Jones spell it out to mum' thing - that 'hindsight guilt' clearly affects Tina, but because (as is fairly typical of this type of 'around a death' thing) Tina 'doesn't really talk about it', I think it is almost certain that Dr Jones doesn't understand how his 'kind words at the time' approach, caused issues for Tina much later on, after mum had died.

Tina's sister: I don't for a minute, believe that Tina wanted her mum to die 'because the day-to-day support had become too burdensome' as her sister 'claimed'. I think Tina just wanted her mum to make her own [informed] decisions. Tina's sister couldn't have been at the discussion between Dr Jones and mum, because that discussion would have been very soon after admission, and Tina's sister lived too far away - so the fact that the sister cannot be sure of who exactly said what, is not the fault of Tina or Dr Jones. This isn't the same as when people could be present, but are 'excluded from being present' - deliberately excluding people, is very often a bad idea.

There is something, that this 'people like to be involved and to understand what is happening' point, raises about 'NHS behaviour'. The NHS, still seems to somehow want 'a single named relative as a contact point': it is as if the NHS, which has internally got 'hierarchical structures' which it builds into its 'behaviour', cannot really cope with the less formal and more ambiguous 'relationships' within family groups. That really does need to change - attempting to impose 'structure and hierarchy' onto family and friends, however convenient it would be for clinicians if such hierarchies existed, isn't a helpful thing to try and do. Asking (can we contact the family through one person) is one thing - but imposing (we [clinicians] are only going to talk to the family through 'Fred'), is quite another.