A wider discussion of 'carer'
There were some interesting issues cropping up in my piece where I asked if the current EpaCCS is right to insist on (not 'request' or 'allow for' but INSIST ON) the recording of 'a main carer':
I would like that series of comments to stick to the question I originally asked, but the other points are definitely worth discussing, and clearly some people are interested in discussing them - so, can we please discuss 'everything else about 'carer'' here.
The EPaCCS guidance can be downloaded from:
http://www.hscic.gov.uk/media/18510/1580112015spec/pdf/1580112015spec.pdf
To stress one point, the term 'carer' as used by EPaCCS, does NOT include anybody who is paid to 'care' - so 'employed carers' are NOT 'carers' as defined by EPaCCS. Only family and friends, who are involved in caring, are 'carers' according to EPaCCS.
According to EPaCCS:
A carer is a person who is either providing or intending to provide a substantial amount of unpaid care on a regular basis for someone who is disabled, ill or frail. A carer is usually a family member, friend or neighbour and does not include care workers. (Carers (Recognition and Services) Act 1995.)
Also according to EPaCCS:
A care worker is employed to support and supervise vulnerable, infirm or disadvantaged people, or those under the care of the state. They can be volunteers who provide care as part of their work for the voluntary organisation or paid workers who are providing care by virtue of a contract of employment or any other contract.
My 'area of concern' is end-of-life care, and my interest [here] is in this situation.
One evening, a husband who is known to be deteriorating towards death, decides the quality of his life is such that if his heart stopped, he would want to be left to die (technically, that 'he has decided to refuse cardiopulmonary resuscitation (CPR)'). This 'loosely' amounts to 'I have decided, that my life is already so bad, or the future outlook is so disturbing, that I think I would 'be better off dead now'.
Surely, the husband is quite likely to explain this to his wife, and tell her why he feels this way, BEFORE he tells his clinicians of his decision ? I feel sure, that if I made such a decision, I would would want to explain it to my loved-ones first: and, I can assure you from a similar situation with my mum, 'once you've been told, you know - if a loved one makes it clear to you, that CPR would be against his/her decision, THEN YOU KNOW'.
So, what should happen, if one evening he explains to his wife 'that he definitely no longer wants attempted CPR', and the husband and wife end the conversation 'with an agreement to sort it out with the GP the next day', BUT HE THEN COLLAPSES BEFORE THE NEXT DAY ?
If the wife phones 999, and when the paramedics arrive she tells them 'my husband explained to me last night, that if his heart stopped he definitely did not want to be resuscitated' should the paramedics attempt CPR or not ?
I think 'not' - but I can tell you, that at the moment the chances are the paramedics would attempt CPR (to me, this amounts to 'would call the wife - who was there, whereas they weren't - a liar. I was effectively accused of lying by 999 services after my mum died - and it isn't a good thing to happen to you). I am deeply annoyed, by 'asymmetric trust', and have written about this on BMJ:
http://www.bmj.com/content/350/bmj.h3181/rr
http://www.bmj.com/content/350/bmj.h3181/rr-2
http://www.bmj.com/content/350/bmj.h2877/rr
I will come back later, and discuss 'next-of-kin' and whether everyone 'is good at caring', etc: there is quite a lot to discuss about 'carers and caring', and as it happens, I'm probably not very good at caring (I'm rather 'nerdy and not very empathic' - as readers of the DIC forum, might have worked out already). I'm quite good, at being grumpy !
This 'next of kin' (raised by Vicki Hon) is another one, which I find unhelpful in connection with EPaCCS.
EPaCCS is the electronic system for 'identified as 'final year of life' patients', and often such patients will be mentally-incapable for one reason or another - so a family carer, needs to pay attention to the Mental Capacity Act (and the MCA happens to start, by making it clear that mentally-capable patients, are entirely autonomous with respect to the REFUSAL of offered or potentially offered treatments). As a family carer of a person who has not got mental capacity, you can be criminally liable for 'neglecting the person' under section 44 of the Act - the Act uses the phrase 'if a person ("D") ... has the care of a person ("P") who lacks, or whom D reasonably believes to lack, capacity ... D is guilty of an offence if he ill-treats or wilfully neglects P.'. The same section of the law, is used to prosecute everyone - professional or 'family'.
The MCA does not use any concept of 'next of kin'.
There was some 'coma guidance' published in 2013, 'Prolonged disorders of consciousness: National clinical guidelines', published by the Royal College of Physicians and endorsed by an impressive list:
Association of British Neurologists
Association for Palliative Medicine
British Society of Rehabilitation Medicine
Chartered Society of Physiotherapy
College of Occupational Therapists
Society of British Neurological Surgeons
Society for Research in Rehabilitation
It has this to say, about 'next of kin':
'Although clinical practice is that only one individual is identified as 'Next of Kin', there is no such legal concept. The MCA does not privilege any one relative's views above another, but requires that there is consultation with and account taken of the views of anyone engaged in caring for the person or interested in his welfare' (MCA s4(7)).'
The reason for 'next of kin' is explained - and, whether this is sensible for EoL situations, is where I seem to differ from the EPaCCS people at the moment:
'Normal procedure is for all communication between the family and the treating team to be channelled through the named 'Next of Kin', which has advantages in consistency and economies of time. While this individual still has a key role as the primary recipient of information, the frame of communication often needs to be widened for best interests decisions, in order for the treating team to obtain a holistic picture of the patient's character and preferences.'
As usual, the coma guidance departs from my own position on the MCA with respect to 'does anyone possesses decision-making POWER in the absence of a Welfare Attorney or a Court Deputy ?', but I've discussed that all over the place: on the subject of 'next of kin' we agree.
I think - I'm not too sure, as I read that sort of stuff years ago - that there might be a legal concept of 'next of kin', but it only comes into play after a death (I've a feeling that it is 'next of kin', and not necessarily the executor, who should be 'guiding funeral arrangements' - but that is post-mortem, so it has nothing to do with decisions about a patient's treatment).
Is everyone, an 'equally good carer' ? No. Is everyone, 'equally empathic' ? No. Is everyone, 'equally technically competent' ? No.
I think - if this phrase makes any sense - that 'I myself am 'Aspergerish''. I'm definitely much more at the 'logical-analytical' end of any scale which has logical-analytical at one end, and 'highly empathic' at the other end. So I would probably be reasonable at 'deciding if a wound is healing' by observation, but I'm much less good at 'getting into people's minds'. I'm good at 'the nerdy analytical bits'.
But analysis, can be applied to what clinicians write, and you can work 'backwards' to make an educated deduction about 'how clinicians think and will [therefore] behave'. And however 'analytical' or 'empathic' you are as a family carer, it is how the professionals behave, that affects you: changing the 'behaviour of the system' will need both 'nerdy folk like me' and also 'empathic people who engage at the level of 'feelings'' to push for improvement, if we are to achieve improvement.