Perspective during EoL: destroyer of bridges, builder of silos.
Perspective during EoL: destroyer of bridges, builder of silos.
It seems obvious, that a number of different perspectives should improve understanding – but, all too often, it seems to me, 'perspective acts like blinkers on a horse'.
I was prompted to write this piece, when Dr Mark Taubert and I were discussing Social Media on Twitter, after I made the point in a tweet that social media allows for [in the specific context of my own end-of-life analyses] 'unhappy bereaved relatives to find each other, and to share and discuss their bad experiences, in a way that was much more difficult before the internet and things such as Facebook, Twitter, etc'. Mark suggested that we might get together and write something for a conference which will take place during 2019, and after I'd tweeted 'we need to be clear about the question', Mark posted:
yes, we'd have to frame our question very carefully. Relative-empowerment could be a theme, perhaps the pros and cons as seen by you. It would be for @EAPCvzw http://www.eapc-2019.org/home.html by the way.
I was surprised by that: it hadn't seemed to me that we were originally discussing 'the greater empowerment of relatives', but setting that specific issue apart, it made me wonder: 'Mark is one of the clinicians who better-understands my positions – does Mark think that my pieces, are arguing for greater empowerment of relatives?'. There might be 'a semantic issue' here - I'm not arguing for a greater 'empowerment of' relatives, than can already be found inside the Mental Capacity Act: I'm just arguing that we should respect the MCA and the logic that flows from the Act, however as many professionals currently don't do that, in my view currently relatives are '[illegally] being 'disempowered' by current professional behaviour'.
This has prompted me to write some pieces about 'Perspective Issues during End-of-Life' and I intend to post them here, as PDFs. The first 3 PDFs are attached here, and there are others which I am still in the process of writing, which I will add to this thread. The 'OWNERSHIP' one is quite lengthy - it is also in reality another way of expressing my usual assertion of 'start by getting the Mental Capacity Act's description of decision-making and decision-making authority correct'.
Further additions will cover 'PROCESS' and 'MCA and ACP' among other possible topics.
Associated files and links:
May I present a theory to you please (just my own).
I work in a hospice setting and have come to the realisation they there is an assumption that people who work in hospices 'know all about dignity', and therefore thus far the concept has been dismissed. I am about to challenge that notion, and think we should never just assume and in fact we should promote Dignity. What's your thoughts?
I don't work in a hospice, so I don't know how the concept of 'dignity' is understood and applied by hospice staff: but I suspect that if you were to look closely you might find that 'dignity means different things to different people', and you could well be right that 'it is assumed that hospice staff understand dignity'.
There was a piece in a report (I think it was a House of Lords committee in 2014 from memory) about implementation of the Mental Capacity Act. A social worker, I think it was, commented that 'most of the training about the MCA seems to have been aimed at social care staff, because it was assumed that doctors and nurses would understand the MCA'. The report made it clear that far too few people did understand the MCA, and even fewer people were applying the MCA correctly.
And 'the MCA is a written-down law' - so to understand it, you can read it. The concept of 'dignity' isn't 'a written-down thing' - so, I think you probably have a point if you are about to 'challenge the notion that people who work in hospices 'know all about dignity''.
This sort of 'what does it mean?' issue crops up everywhere: another place being 'safeguarding' which means very different things, to different people and different professional groups.
Those are my 'quick thoughts' - along with the thought that you might find it quite difficult, to investigate whether hospice staff 'know all about dignity', and to make progress with your findings (I've been doing MCA/EoL/CPR since 2009, and I think I've made very little progress so far).
I have just finished adding to my part 4 - which discusses a few issues with 'process' during end-of-life - and I'm also posting part 5 'MCA and ACP' and part 6 'US and THEM'.
thank you for the feedback. When I have explored the literature there is endless theories on the meaning of dignity, as such making it very difficult to define. Then of course you have the fact that it will mean different things to different people, further adding to the complexity. I have an idea, in the context of EOLC, that the most important thing to explore is what does it mean to the patient, acknowledging that this may even change throughout their journey. I gave a teaching session on Dignity in Healthcare last year, and invited a patient as guest speaker to share her cancer journey. This narrative was extremely emotive as you may imagine, and did highlight just what dignity meant to this patient. Maybe listening to patients narratives is the best way to promote dignity in healthcare.
I'm a bit busy this morning, with something from Twitter yesterday.
But in short - I think you are spot-on.
Not only is listening to the patient the most important thing in terms of dignity, but it is also the most important thing if you analyse English and Welsh law (basically, that is what the Twitter discussion is all about).
You might be interested in a recent open-access paper by Keith Cass, a patient, and Mark Taubert, his doctor, which you will find at:
If you want I'm happy to discuss this more, but at the moment I'm a bit tangled-up with other stuff, Mike.
I've just spotted a proof-reading error in 'Part 1' - part of its Appendix reads:
I was sent an e-mail which commented on my 'feedback to and criticisms of' aspects of ReSPECT, and I was particularly irked by a part it: by its assertion that the reasons I dislike aspects of ReSPECT, such as by the presence of only the signatures of clinicians on the Main ReSPECT Form, because to me it should be blindingly obvious why I object to a form, which 'carries the wrong signature'.
I clearly missed a bit out - it should have said:
I was sent an e-mail which commented on my 'feedback to and criticisms of' aspects of ReSPECT, and I was particularly irked by a part it: by its assertion that the reasons I dislike aspects of ReSPECT, such as by the presence of only the signatures of clinicians on the Main ReSPECT Form, are hard to understand, because to me it should be blindingly obvious why I object to a form, which 'carries the wrong signature'.
In other words, I'm 'irked by' this part of ReSPECT's e-mail to me:
'We are, in truth, somewhat bewildered by your repeated negative attitude, which contrasts sharply with the spirit of collaboration that will be crucial to achieving change to promote the level of high-quality care that both we and you wish to see – please remember we are all people too, and we are striving to improve patient
care and patient and family experience.'
ReSPECT are clearly 'irked by' this - which isn't quite my position:
'To read that the ReSPECT "team" are only interested in increasing clinicians’
power and taking power away from patients and carers questions the
competence, motivation & integrity of all those involved, many of whom are
patients, bereaved relatives or their representatives.'
What I do think, is what I said at:
'In brief - any recommendations on a ReSPECT form which are made on 'best-interests grounds' should not be 'signed off' by the senior clinician.
The form does that - only has clinical signatures on it - which seems to me to indicate that those learned clinicians who developed ReSPECT, do not accept that the MCA has moved 'decision-making' to patients, people chosen by patients, and other lay people involved in caring for mentally-incapable patients, and that 'clinical paternalism is supposed to be dead now'.'