Season's Greeting Everyone
I imagine that almost all of the regular readers of this website, are either caring for someone, either as part of family life or professionally, or else are involved in a campaign to improve care and dignity.
My personal experience, mainly of the 'campaigning' thing, is that it can be frustrating and 'depressing', and I suspect that carers can often have the same feelings. It can often seem as if you are involved in some sort of trench-warfare stalemate, with all of your efforts only managing to 'hold the line at best', rather than to really improve the situation.
As a grumpy old codger anyway, this does nothing to make me a more positive, or more cheerful, person.
This morning, I decided to spend a little time between now and the end of the year, trying to think about 'any successes I've had' - I plan to ask myself 'so, what do you think you did in 2015, that probably has made things a bit, even a little bit, better ?'. I'm not sure I'll find a lot - but I probably should sometimes think about that, instead of only concentrating on 'the failures, and the 'bad stuff that bothers me so much''.
Everyone who is trying, even unsuccessfully, to improve care and dignity has my admiration and best wishes, and I wish you all the best for 2016 - and I hope you do manage to 'have at least some fun', over the 'festive period',
Best Wishes, Mike Stone
Seasons greetings to you too Mike and many thanks for your stimulating and thought provoking messages on this forum. You do a fantastic job in promoting dignity and quality in health/care services.
Looking forward to a productive 2016.
Thanks Jan,
I feel sure the Christmas e-mail I received from Dignity In Care was signed by you, and I think it covered similar ground to my short piece here.
I'm not sure that I'm making much progress at all - and I think what I mainly do, is ask different questions from the ones the professionals pose.
Just before Christmas, I discovered that a new website 'My Living Will' seems to think it is a good idea to combine [in a single document] the Advance Decisions described in the Mental Capacity Act, with a 'largely invented' concept of 'advance statements':
https://www.mylivingwill.org.uk/
This does NOT make any sort of sense: an Advance Decision removes the decision-making from everyone else, and claims it back for the patient: whereas these 'advance statements' are merely things which need to be considered during best-interests decision-making, and whoever is doing it, best-interests decision-making is of nightmarish complexity [and 'fraughtness'] compared to simply following the patient's own autonomy.
More disturbingly, I think the MLW website has applied a court ruling about best-interests decision-making [in the situation of a relatively stable comatose patient whose prospects of recovery are not yet clear] to the applicability of an Advance Decision written by a patient who had considered becoming comatose, and who might also have decided [and indicated] that the prospects of recovery were irrelevant (in other words, My Living Will seems to think that section 25(4)(c) of the Mental Capacity Act has been repealed, something I do not believe to be correct). It is deeply disturbing to me, because the MLW website tells its readers 'A diverse group of senior healthcare professionals, senior lawyers and an ethicist have overseen My Living Will's creation of this website ... A firm of solicitors, Bates Wells and Braithwaite, as well as a senior member of the Court of Protection have reviewed this website and are content that it conforms to the Mental Capacity Act (2005) both in detail and in spirit'.
This combination of an Advance Decisions and 'an advance statement' and the description of the combination as a 'Living Will' also conflicts with what a quick Google search for 'living will' turns up, which is 'another term for an advance decision' - so, it falls foul of my 'clinicians using everyday words for 'different and specialised concepts'.
I might add a piece to my 'Specialist terminolgy' one, covering this in more detail - this was written 'spur of the moment' after reading your reply.
It isn't necessarily that the professionals do not see the same problems - just that they weight the required answers, very differently at times.
It isn't very 'festive', but I have a BMJ piece just before Christmas at:
http://www.bmj.com/content/351/bmj.h6631/rr-0
I titled it 'Why you argue with a dying patient ?' and so far, nobody seems to have 'liked it' [which doesn't prove much - it isn't obvious that many people actually read the paper I was responding to], but in itself the question is revealing of my differences with the clinical professions: I wanted to respect decisions made by my dying parents, but 'the system' seems to want to follow decisions made by the 'senior clinician'.
This 'difference of opinion' is hugely problematic if end-of-life patients are in their own homes, if it is allowed to stand, for many very obvious reasons.
Hope 2016 goes well for you and for DIC,
Regards, Mike
Hi Mike keep up the campaigning - look out for your successes and achievements because someone's got to keep up the momentum. The in depth research you do unveils the anomalies that are often missed. You bring to the fore issues that could be an erosion of human rights missed by others and put in the too hard box. I wish you the continued strength and capacity to keep on fighting the good fight and Thankyou again for joining us in our quest to make a difference!!!!
Jan,
I don't do all that much 'detailed research' [and in fact, I tend to dislike my stuff being described, as it sometimes is, as 'research' - I see it as 'analysis'] but I do read the guidance which people publish about EoL. And I just so happen to have a brain, which is awful at remembering information, but very good at spotting 'contradictions' (the second, might be a consequence of the first).
I think you are spot on with '... put in the too hard box'. What seems to happen, is that professionals essentially stress only their particular 'job objectives' and even if they can see 'other remaining issues/problems', those things are either regarded as being less important, or are 'put in the too hard box' because they are indeed quite tricky: but often, those things are hard to resolve, because of things the professionals themselves 'have put in place'.
And the 'joins' between different professions, are often less of a join, and more of a dividing chasm.
Keep up your optimism - can't see it above, so you presumably mentioned it in the other thread - because I'm pessimistic enough (and grumpy enough) for several people !
Cheers Jan.
Heddwch
Mike
Mike Llywelyn Cox
http://www.facebook.com/micoxy?ref=name
http://micoxpplog.blogspot.com
An Equal Lives Trustee (www.equallives.org.uk)
A DPAC Norfolk member (http://www.facebook.com/DPACNorfolk?ref=ts&fref=ts)
A NSUN (http://www.nsun.org.uk) member.
A http://www.solnetwork.org.uk member.
and occasional jazz instrumental teaching.
All views and statements expressed here are entirely my own and, unless stated otherwise, not those of any other individual or organisation.
Thank you all for including me
Carol
From: Dignity Champions forum [mailto:[log in to view email address]]
Sent: 04 January 2016 16:42
To: Carol White
Subject: [Dignity Champions forum] - Re: Season's Greeting EveryoneForum message posted by Mike Llywelyn Cox.
Cheers Jan.
Heddwch
Mike
Mike Llywelyn Cox
http://www.facebook.com/micoxy?ref=name
http://micoxpplog.blogspot.com
An Equal Lives Trustee (www.equallives.org.uk) A DPAC Norfolk member (http://www.facebook.com/DPACNorfolk?ref=ts&fref=ts)
A NSUN (http://www.nsun.org.uk) member.
A http://www.solnetwork.org.uk member.
and occasional jazz instrumental teaching.All views and statements expressed here are entirely my own and, unless stated otherwise, not those of any other individual or organisation.
> On 4 Jan 2016, at 08:55, Dignity Champions forum <[log in to view email address]> wrote:
>
> Forum message posted by Jan Burns.
>
> Hi Mike keep up the campaigning - look out for your successes and achievements because someone's got to keep up the momentum. The in depth research you do unveils the anomalies that are often missed. You bring to the fore issues that could be an erosion of human rights missed by others and put in the too hard box. I wish you the continued strength and capacity to keep on fighting the good fight and Thankyou again for joining us in our quest to make a difference!!!!
>
>
>
>