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Mandatory instructions for action when somebody dies

Posted in: Let's get talking | Discussion and debate

2-Oct-2012 8:07 am

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24-Jan-2013 10:17 pm

Thank you, everybody for your contributions which I hope will keep coming. I am sorry I haven't had time over the busy end of year period to enter into the debate and respond to each one, but I have read them all with interest.

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The Nobody

The Nobody

Posts: 7

25-Jan-2013 8:23 pm

Thank you Mu The Milli Mole for your reply, which moved me to tears. I am rubbish at this sort of thing and I don't know how nurses deal with it, so I'm glad I'm a manager even though we (quite rightly) come in for a lot of stick. I wrote the EOLC baseline review for an organisation some years ago and I kept thinking I saw my dad every time I walked by the ward, even though he'd died a while before. They moved all the meetings without me asking, their sensitivity and observation skills were amazing. The review was about what our population died of, where, what services we had and what we needed to do. That's where I came across the LCP. As a scientist, I was shocked to learn that death is an inexorable a physiological process as birth, and no one would dream of asking a woman in stage 2 labour to pop back in a few weeks because we haven't any beds. But experienced nurses told me exactly what you said - some people find strength out of seemingly nowhere and surprise even the longest serving palliative care nurse.
However much crap I may get for being a manager and too squeamish to have been a nurse, it genuinely gives me a sense of honour and privilege to work for people like yourself. Thank you for caring for patients, and sharing your own story too. I respect you and your profession tremendously.

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michael stone

michael stone

Posts: 145

26-Jan-2013 2:18 pm

Millie, when (if) you get the time, would you be kind enough to tell us why you posted the original question ?

Was it just general interest, some sort of professional-development thing, or do you have a personal experience that caused you to post it ?


Manager - 'As a scientist' ? I've got a doctorate in chemistry, and I therefore 'sort of think like a scientist' (and I have reservations, about a lot of 'evidence' used in the NHS). Are you willing to further elaborate, on your 'as a scientist' ? I once heard a research medic, on radio 4, pointing out that 'clinical medics think differently' (my phrase) - you mentioned common sense somewhere, and actually it seems more like 'group norms' than any genuinely 'common' sense, quite often !

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26-Jan-2013 11:40 pm

DH Agent

I explained this in my previous comment to The Manager a couple of days. I can't scroll back to page 1 for the time and date as I will loose this one but have copied the reasons here for you which is the last para. of my previous comment. the rest of that comment explains my personal and professional involvement in the care of dying patients.

I also wrote a short note of thanks for the comments just above yours as I have not been able to respond to them all individually but hope they will keep coming.


"My question above arose from all the controversy not long ago in the press, followed by numerous comments expressing a very wide range of views, surrounding assisted suicide, euthanasia, pushing for such directives or being earmarked by the GP for the LCP, palliative care or as a patient near the end of life and for organ donation. Many commentators appear to perceive the authorities are being accorded increasing rights to intervene in our personal lives which include what care we should receive and how our lives should end, etc. From this arose my hypothetical question as to whether it could ever become an obligation to file such a set of directives with, for example, our GP surgery or record them on an electronic data base along with our other medical notes."

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The Nobody

The Nobody

Posts: 7

27-Jan-2013 10:59 am

Hello Mike! PhD biochemist, worked in labs and the private sector, went into NHS management in the late 90s.
The scientific approach is disliked intensely in NHS management. Evidence rarely informs policy or if it does, it's not of a high standard. Massive changes are rarely piloted. We have a class of professional managers (MBA/ similar) who are supposed to be "leading" change. Completely the opposite of what I was used to. You would never have an accountant leading R&D. In industry, a lot of the management functions are looked at as a service to core work rather than put in charge of something they know little about. We spend a fortune in the NHS on topics like how do we engage clinicians or six sigma in redesign but are terrified of genuine change.
On a personal level, I find doctors, pharmacists and GPs easiest to understand because I can use articles in the BMJ to work with. Nursing is far more diverse and reading this site has helped me understand the profession. I have a difficult relationship with many of my managerial colleagues!

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27-Jan-2013 11:54 am


The Manager


27-Jan-2013 10:59 am

Another very interesting post from you, and from a different perspective.

I am particularly intrigued by your comparison between diversity in doctors, pharmacists and nurses and wonder if you can expand on this and what you mean by diversity in nursing.

From my own point of view, I know how diverse nursing can be with an expectation to take on a very wide variety of extraneous and time consuming duties sometimes just to keep a patient comfortable or for the smooth running of the ward. I have done small electric repairs, unblocked loos and wash basins, put windows back on their hinges, not to mention cleaning, deep cleaning and endless other tasks which have needed urgent attention in the impossibility to wait hours or days for somebody from the relevant department to come and do an assessment before sending somebody else to do the repairs. Some unexpected chores may also need carrying out at night, if they can't wait until the following day, when no technicians are available. For other unrelated nursing jobs that need doing, one often hears from others "well can't you do it?" (giving the impression that there is nobody else available and you are liable if you don’t!). It seems people are keen just to dump everything onto nurses as they are always there on the ward. It is little wonder there is so much difficulty in coping and giving full attention to all the demands of patient care. Comments about this usually result in criticism of your ability to prioritise, organise and manage your work load!

Diversity may also mean the very wide knowledge and skill base nurses need to meet many different tasks with which they may be faced on a daily basis and which continues to develop after formal training, or it may mean the very wide variety of different personalities from many different backgrounds and beliefs and values in the profession. Differences in training throughout different schools and hospitals in the country may also influence attitudes towards care and the development of the necessary skills. Training ending with a state final examination used to be far more unified across the land and presumably the knowledge base required was much smaller than it is now with advancing technology and medical knowledge and a greater range of treatments and services which can be offered to patients.

Returning to the Jack/Jill of all trades, my Dad would change a lightbulb in his office or clean and tidy his desk without giving it much thought until general management made its appearance and he was suddenly forbidden to play electrician by H&S. He had to sign four forms (maybe his secretary actually filled them in for him) and wait several days for a risk assessment before the bulb was changed making reporting on his patient's x-rays rather difficult. Although he was resourceful and managed to find some solution and saw the funny side, he reported the incident in the local newspaper to illustrate the absurdity of this new system with which older consultants, used to being their own bosses and managing their own, their departmental and their patients' affairs, found difficult coming to grips with!

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michael stone

michael stone

Posts: 145

27-Jan-2013 1:22 pm

Sorry Milli, my apologies - I've been pushed for online 'spare' time lately, and jumped beyond your already posted answer, having not checked back on this one for a while (one of the things currently occupying my online time, is writing up something to send to the inquiry into the LCP - sort of fits with this theme !).

Manager - if you have got a doctorate in biochemistry, and I've got one in chemistry, this probably goes some way to explaining why we each can understand what the other writes !

I agree with you about dubious evidence in the NHS (when I was at university in the 70s, the 'real' sciences used to joke that Social Science was 50% true - I look at lots of 'clinical-ish' studies and think 'what !') and personally I nearly always find that the more senior the clinician, the more I can follow their answers (however, they also tend to be so busy as to try to avoid discussions). However, most doctors are hopeless at law !

Many nurses - not all, but many - seem to adopt an approach (perhaps drilled into them, perhaps for self-preservation) of 'I follow the guidance'. So I read lengthy stuff written by nurses, and a 6 page piece can have 2 pages of references appended: but no critical dissection of any of those references, and certainly not any 'I think Jones et al must be wrong because ...'.

I briefly wondered about another aspect of this, in a short discussion with 'mike' on these pages, because although lots of nurses now do MAs, are these 'taught' degrees ? Science doctorates involve lots of 'research' and not much 'teaching' (well, when I was a D.Phil chemistry student that was true) and I'm wondering if nurse training, does not strongly promote critical thinking ? I never really came across MAs etc as a student, because in my day chemists went directly into doctoral studies from first degrees.

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michael stone

michael stone

Posts: 145

27-Jan-2013 1:27 pm

27-Jan-2013 11:54 am

Milli, I've just scanned that excellent post - I will properly comment on it, when I get some time (and perhaps after the Manager has replied to you). I think nurses probably do get left with all of the bits and pieces nobody else is doing, often - but nursing is expanding anyway (some nurses now do things only doctors would ahve done 40 years ago, etc).

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The Nobody

The Nobody

Posts: 7

27-Jan-2013 5:15 pm

I don't think I can give an "evidnece based" reply (!) but my gut feeling is that as our society gets more litigious, it may well be that we will all have to register our wishes somewhere, although NHS care records will have to improve significantly for that to happen.

My point about pharmacists and so on was their use of scientific studies to drive forward their profession and practice. It's easy and a genuine pleasure to bring them an article from a journal, and say, look, I've read this, what do you think? Nursing research is more qualitative but what I meant about diversity was more in relation to working environment and learning styles. A community nurse will be under completely different pressures to a health visitor or a colorectal cancer nurse. There isn't one single place for literature like the BMJ or PJ and that's part of the reason I came to this site. And I'm increasingly beginning to see that either lack of time for catching up on clinical developments, training opportunities and perhaps the way nurses are taught, means they don't all see research as helpful. Jill Mabel's piece on patients and staff well being was meant to help but many people thought it was self evident or should be used to argue with the Govt. but when you write a business case for more staff, that's the sort of evidnece I use. After all, how do you calculate things? My trust employs 8000 staff. Do we have too many or too few dieticians? How do you work it out?
But another point is that nursing research isn't always taken as seriously as medical because it isn't a double blind randomised control trial.
There was one excellent post I read while exploring this site that said nurses didn't "claim" any territory during the 70s/80s, like physics or OTs or other groups did. So they got landed with everything. I use the publications from the Royal Colleges a lot, but I have been disappointed at the small number on the RCN site. Some are good, but there aren't enough recent ones. I always ask my senior nursing colleagues I'll fire the gun, I need you to give me the bullets! (To get them the resources they need, I hasten to add!)

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27-Jan-2013 6:06 pm

The Manager

regarding your first post I find what could happen highly disturbing but don't exclude the possibility in the future. Not much surprises me anymore although I think there is a lot of scaremongering in the national press which often provokes highly emotional responses and i get the impression that some of the public believe what they read. It is also worrying that some go along with the advice they read or are even given by the GP or other health care professionals without question, and some feel there is no other choice.

As far as research goes, it came to nurses much later than the other professions and was previously the domain of academics in nursing and those teaching in schools of nursing. Many nurses, and especially those who have not done degree courses may not be trained in the research process).

You are obviously famaliar with the RCN nursing journals - they also publish ones in research, care of the elderly, mental health, nursing management and the Nursing Standard and also have an extensive library as well as journals available online. their website, part of which is open to non-members, is also another useful resource and all the proceedings from Congress in the spring are online and make fascinating viewing. There is also the British Journal of Nursing which might be of interest to you and I believe there is also a community nursing journal.

Interesting to see the dilemma of staffing and its costs. I only know on my ward that we had no two days alike making any decisions for staffing the following day very difficult. If we had too many on we often had to replace on other wards. We had a complex tool (and time consuming forms to fill in with difficult calculations for the time we spent on each task for each patient) to estimate the dependency of each patient over a 24 hour period but the number of points each patient scored each day differed depending on their condition and the amount of care they needed such as a dressing change which was not carried out every day. Even time taken talking to them (including small talk which we often used to make informal observations when they didn't realise they were being observed) had to be recorded! However, we noted this really made no difference to the number of staff we had the following day.

A new and very unpopular idea that management came up with (which fortunately did not come to fruition in my time there, and I don't know if it ever did) was that they considered all nurses as generalists and they should no longer have a ward assigned to them but should be in a pool from where they could be sent all over the 1000- bedded hospital despite the fact there are some areas that some of us are definately not trained or qualified to work in, and some areas I for one would not have wished to work in, causing a very unsafe and uncomfortable situation for everybody involved. I think they were eventually made to recognise that some areas were too highly specialised and would have to maintain their own staff.

Nursing is highly reliant on common sense and 'practical wisdom' (Barry Schwarz "Using Our Practical Wisdom" - TED Talk - which I recommend for his references to healthcare and its management) and, with all due respect, we do sometimes wonder where managers get their ideas which seem to defy all commonsense! One of problems was that managers were always invisible to us and any orders were handed down from above without any opportunities for us to talk them through and some of their ideas were truly unrealistic and inpractical and sometimes unsafe in a ward situation and I do not believe they should have been interfering in direct patient care.

Will look for the TED link in case you are interested (I think you would like it) and post it in the next space below as I have on occasion lost my comments just as I was about to post them!!!!!!!!

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27-Jan-2013 6:20 pm

The Manager

Barry Schwarz, American Psychologist.

both these, I think, are very relevant to health care and management. I look forward to reading his book "Practical Wisdom: The Right Way To Do The Right Thing".


http://www.youtube.com/watch?v=IDS-ieLCmS4

"Using Our Practical Wisdom"



http://www.youtube.com/watch?v=lA-zdh_bQBo

"Our Loss of Wisdom"


Have a good evening


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The Nobody

The Nobody

Posts: 7

27-Jan-2013 6:40 pm

I love the TED talks! Will look at it tomorrow. Have a listen to the two by Brene Brown, I ended up buying one of her books.

Yes, we do come up with some daft ideas. I heard the one about SpNs just being floated around some trusts. I was at a conference where they asked one of the Helath Ministers at the time (and a former A&E nurse, forgotten her name) and she was visibly shocked, and said no, that absolutely shouldn't be happening, write to me. I'm glad they stopped that at your trust. I hope they out a stop to our latest idiocy, which is zero hours contracts.

I think managers and clinicians should be like the warp and weft of a piece of fabric. We need each other. If a lab's not working efficiently, I know how to help, because I used to work in one, but anything else, I wouldn't so I'd ask. Part of the problem is management training. One of my best friends from school is matron of a nursing home, and she prides herself on taking the most profoundly physically and mentally challenging patients that no one else will, and doing everything she can for them. I had lunch with her last weekend. She said one lady had a catheter she didn't need, pressure sores she could help, was clearly very distressed (demented EMI) and what a transformation after she'd had her for a week. It really struck me - you can look at someone and know what to do, and what you can't but can alleviate. I looked at the Royal Marsden book of procedures and saw how the various things are all broken down into hydration, managing nausea and so on. Managers have the equivalent but although six sigma and so on work in a factory or an airline or a lab, health is messier and people aren't widgets. I must confess I was gobsmacked when I came to the NHS from the private sector, because I thought my job was to run along behind clinicians making things happen for you rather than lead things where I need a dictionary and the BNF. And the way we work out staffing has to fundamentally change. You cannot have a crystal ball to predict demand and dependency. What did they do before PbR when there wasn't much on? Deep clean the ward, do some tidying up, catch up on paperwork, talk to the patients more..... We can't run wards like a restaurant where if you run out of kitchen porters you just ring an agency and get unskilled labour out of thin air for minimum wage.

I will ask a friend to type in her PIN number to see if I can have a look at some of the journals you mentioned, and thank you for that and your detailed reply!

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michael stone

michael stone

Posts: 145

28-Jan-2013 11:07 am

This discussion is getting interesting ! I'll need to look at it properly, when I get more time.

But I don't think it is new, or opaque: it comes down to the fragmentation of roles and backgrounds, lack-of-honesty from politicians, and the complexity of something a large as the NHS.

One patient and one clinician, would be a pretty simple situation !

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michael stone

michael stone

Posts: 145

28-Jan-2013 2:18 pm

Is anybody else thinking of submitting something to the review of the LCP, being headed by Lady Neuberger ?

I’ve done mine, and when I asked my DH contact what are its terms of reference, I was pointed at:

http://mediacentre.dh.gov.uk/2013/01/15/independent-review-of-liverpoolcare-
pathway-to-be-chaired-by-baroness-neuberger/


I’m not very good online, and I couldn’t work out how an individual would make a submission (i.e. I couldn’t find an address to send stuff to) – but if that wasn’t just me, I have got an e-mail address, which so far as I can work out, must be the address of the review’s Secretariat.

There is an interesting sentence, on that web-page:

It {the LCP} encourages staff to anticipate the treatment an individual may need, and to be ready to provide it swiftly, but it does not dictate the treatment anyone should receive.

As I’ve pointed out:

I find ‘Liverpool Care Pathway’ conceptually confusing as a descriptor (because it isn’t a ‘pathway’, and in my view it is not ‘an entity’ being described). The phrase ‘on the LCP’ will imply to some less-expert staff, that the LCP ‘is a thing, as opposed to a prompt to behave appropriately’, in my opinion – this could easily lead to treatment becoming ‘generalised’ as opposed to being adapted to the needs of each individual patient.


By the way, I keep coming across 'shared decision making' within clinical stuff: does anybody else, get as annoyed as I do, by the conceptual confusion this phrase often indicates ?

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michael stone

michael stone

Posts: 145

28-Jan-2013 2:26 pm

24-Jan-2013 9:14 pm

Thank you for that, Manager/Nobody - I had missed that, between my earlier posts and coming back to this site.

24-Jan-2013 10:14 pm

Thanks for that as well.

I will comment on both of those posts later, and you both raise points I keep stressing in my EoL 'discussions'.

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michael stone

michael stone

Posts: 145

28-Jan-2013 3:32 pm

The Nobody
Posts: 5
24-Jan-2013 9:14 pm

‘the way he chose to die’ …… ‘One of the most profound was something his SpN said to me, which was we all have a choice about how we die. I'm all for women choosing how to deliver their baby or other lifestyle choices we all make, but that had never occurred to me before. I stopped trying to force him to do what made me feel less guilty’

That is what I keep telling people – along with ‘in the end, all you can reconcile yourself with, is that the dying loved one’s wishes are being followed’ (the problem, is that the family, not the HCPs, tend to understand those wishes/attitudes).

Mµ the Millie Mole
Posts: 10
24-Jan-2013 10:14 pm
The Manager

‘Having looked after many dying patients and witnessed the many different reactions of members of their families I have concluded that at present I am not ready, beyond leaving a will, to decide how I will be treated following a serious incident or when I am dying although I now realised fairly recently I would not want to be resuscitated or put on life support.’

‘one has no idea how it will be when one is in such a situation or near the end of life and when the time comes one may feel totally differently about how one wishes to be treated.’

THE POINT: people only die once, so the ‘experience’ is new for almost everyone, and you can change your mind as things happen (so ACP cannot really be a ‘route’ or ‘pathway’, it has to be a set of options to be taken as-and-when); everyone is different, and professionals are misguided if they believe that they can really ‘understand how other people will react to death’.

By the way, my mum was like The Manager’s father, and she was resistant to interventions and very determined to die at home (my father had died at home, and my mum never willingly visited doctors {about 40 years since her last visit to her GP} - my mum would not even take aspirin for a headache).

My dad did not refuse medical interventions, although he died at home about 30 minutes after getting himself discharged from hospital (heart failure): on reflection, I think my dad held the strange paradox of ‘knowing he was very ill, but not really believing that he was dying’ (although my mother and I, and the medics, knew he was dying).

The problem, re Millie’s ‘advance instructions’ point, is that currently whatever you do as a patient, it is quite possible that you will be ignored (even though Advance Decisions (ADRTs) very clearly allow a person to refuse future CPR even for a genuinely ‘sudden’ CPA, clinical guidance about ADRTs and the behaviour of paramedics, makes attempted CPR for a sudden arrest almost a certainty at present – VERY ANNOYING !).

The situation is not ideal within hospital, but it is much worse for patients who are in their own homes.

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