What I Want [to change for end-of-life 'behaviour']

What I Want [to change for end-of-life 'behaviour']

I apologise that at present I'm posting quite a number of 'discussion topics' - in fact, this one is more like a short book ! But I recently spent about 80 minutes typing an e-mail answer to this question, which a senior medic posed in an e-mail:

'Are you no nearer to finding a way forward? Or, to put it another way, what is it that you most want to influence/change?'

Well, most people who have read my 'stuff', either here or on theBMJ, will have realised that in 'general terms' I want the NHS to integrate professionals and family carers during end-of-life (EoL) care: a very strong theme of mine, is that the laymen must be trusted as the default position (accusation must only follow some evidence of bad behaviour - 'mere confusion' isn't an adequate justification, for 'accusation or implied accusation').

I would like 'the system', to 'clearly publish its answers' to some fundamental questions, which the professionals seem determined to avoid giving clear answers to. One of these fundamental questions is:

Q1 Do dying people, invite the professionals to help - or is the invitation, to take control ? If a 78 yr old man 'becomes EoL', and doctors and nurses are 'invited to help while he dies', does that invitation of itself imply that if the man loses the ability to make and express his own decisions about treatments, etc, he had intended for the professionals, and not his wife of 50 yrs, to 'have the final say in decision-making' ?

The second really fundamental question for EoL at home, is this:

Q2 How can a patient express a decision, to someone who isn't there ? Which can be asked, as 'If my dad explained it to me and I was the only person with him, and he has since lost consciousness, that doesn't mean that he didn't explain it to me, does it ?!'

Someone posted this in a discussion on Nursing Times online:

My 87 year old father suffered with chronic heart and renal failure, he spent years going in and out of hospital at the GP request. He had decided that enough was enough, he didn't want to have more tests, catheters, cpap so took the decision not to allow mum to call an ambulance when he was nearing the end of his life. He died at home surrounding by his family.

I am going to reproduce the e-mail I sent in answer to the question, but it will not be entirely clear in places, unless I also include here, a brief explanation of how I became involved in this EoL debate - I had already sent that to him. This is how I became involved:

I 'got into this' when my mum died at home, about a week before Christmas 2008. My mum had been 'peacefully terminally comatose' for about 4 days, before she eventually died. After she became comatose, I asked the GP 'What do you want me to do when (I said 'if' - but we both knew we were talking 'when') my mum dies ?' and the GP said 'call me at the Surgery, or tell the cover GP it was an expected death'.

My mum died at 8-15am, on a Friday morning. I was reconciled to that (as it happened, my mum had refused to take prescribed meds/drinks just before she became comatose, so I had checked 'that she wanted to be left alone to die' - the GP didn't know that, but the GP knew my mum had resisted both interventions and hospitalisation).

Anyway, I decided to wait until I was sure my mum had died (skin getting cold), then to call the DN team and tell them to cancel the day's visit, then to call out the GP at about 9am (I wasn't sure, if the GP arrived for work before about 9am).

What threw a spanner in the works, was the GP having taken the day off as the start of a long weekend in Europe, the surgery being busy, and the receptionist telling me to call 999. I called 999, told their receptionist that I did NOT consider this was an emergency: she sent a 999 Ambulance (but nobody told them, that I'd told the 999 receptionist 'this isn't an emergency') - very quickly I was 'confronted' (the only word for it) by a paramedic and the police he called in, and then the DN team arrived. It didn't help, that the GP had not made any notes about 'expected death' in the records (that wasn't 'how she did it' and Coventry did not have 'a community expected death policy' {we still seem to not have one}), but I think I had a paramedic used to working in Sandwell (which had a formal policy, and would have expected DNACPRs, etc, in the patient notes - Sandwell and Coventry, are both in the WMAS region).

I was effectively being accused of murdering my mum, by 999 (who have NO IDEA of how 'EoL death at home works') and the police bothered me for 7 hours that day, and left me 'fuming' over the weekend. I became seriously depressed for a couple of years - the behaviour of 999 on that day, probably contributed (as did the subsequent behaviour of my local PCT).

The details take an age, but fundamentally the police and paramedic, couldn't get their heads around 'why I did not call anybody as soon as my mum died' - I couldn't get my head around, why on earth I would need to do that (some relatives might 'want to' do that - it depends). You cannot be reconciled to a death, and also 'react to the death as if it is an emergency' - and if a GP says 'phone the Surgery', that can't be 'an emergency' !

This whole area - EoL death at home - is a complete mess, and it can become an absolute nightmare, for live-with relatives: I found the GP and I were 'on the same wavelength', it was notably harder to 'just get straight answers' out of the district nurses (especially the lead DN - she clearly 'thought about the answer before saying something', whereas the GP simply 'verbalised the answer as it formed in her head' (MUCH BETTER !)), and it was IMPOSSIBLE to sensibly 'talk to' 999.

I make no apology, for asking questions which various professionals find 'challenging' in this MCA/EoL/VoD area.

I had also explained in my e-mail, 'why I was reconciled':

My mum almost never went to her GP (she had previously most recently seen her GP about 30 years before her death), wouldn't even take an aspirin for a headache, and she wouldn't call her GP as she got older and iller: eventually one day she couldn't stand up, I enlisted the help of a cousin, and we called her GP out (she was already 'very poorly' by then: however, this situation isn't easy for a relative, because in the same way that doctors cannot force patients to seek treatment, relatives cannot force people to involve a doctor: in any event, I could see that my mum was dying from old age, which is incurable, I'm pretty sure she also knew that, and her main determination was to die at home). The GP couldn't come until the afternoon, so we also called out a 999 paramedic (who couldn't do anything at all, as my mum 'refused to be touched').

Her GP, prescribed some antibiotics and energy drinks, but my mum
wouldn't take them. While the GP had been trying to examine her, my
mum had been pushing the GP away and saying 'don't want no more'.
Some time later (i.e. a couple of hours later the same evening) it struck me that 'don't want no more' might mean LIFE, instead of 'being examined/messed about', something I needed to be sure of. So when I was sure my mum was 'with me' I asked twice. That evening I said 'Do you know that you won't get better unless you take the drinks and medicines' and the following morning I said 'If you don't take the drinks and medicine you will go to sleep and not wake up again. Is that what you want ?'

My mum wasn't speaking by then - she was nodding and mumbling. But I was bending down in front of her, and having nodded 'yes' to that final question she looked me in the eyes, smiled, and SAID 'you know I love you'.

I can now copy in my answer, to his 'what do you want to happen' question:

WHAT I WANT TO HAPPEN (for end-of-life behaviour)

1) I want police behaviour following 'earlier than 'formally expected' home EoL deaths' to be restrained, in the sense of not treating the 'early' deaths of know EoL patients (that is, patients whose GP thinks they are somewhere within their final year of life) as virtually equivalent to 'the sudden death of a thought-to-be-healthy 25 yr old'.

I described the problem at:

http://www.bmj.com/content/347/bmj.f4085/rr/654490

I have suggested the solution, in the post at 30/11/14 - 13:02 in the series at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=748&forumID=45

The suggestion is:

There is only one obvious solution to this one, and it simply involves GPs recording prominently in the patient's (home-located) medical notes, the situation regarding the likelihood that 'if the patient died a natural death' the death would subsequently be certified by the GP. The situations and the appropriate notes, are pretty obvious:

'I (the GP) would no longer be surprised by the natural death of this patient, but I would need to attend post-mortem before deciding whether to certify the death'

followed at a later stage of clinical deterioration by;

'I (the GP) will now certify any death which is not apparently unnatural, even if I am unable to attend post-mortem'.

The notes HAVE TO BE 'known to the family' and available to relatives immediately post-mortem: if police, despite having found no actual evidence that a death was unnatural, and who will be retaining the body until the coroner is satisfied, start to imply [by questioning and/or behaviour] 'that because the cause of death isn't certain, the death is 'de facto suspicious'', relatives must be able to counter with 'Why is an apparently natural death a surprise to you - when it isn't surprising to the GP ?'.

I see no reason, why GPs need to get 'approval' from either Coroners or Police, to include within medical notes these statements, which merely amount to the GP's 'explanation of the current medical situation as it relates to post-mortem certification of the death' - and even if someone introduces 'patient confidentiality', the resolution of complications around that starts with patient permission (so, again, nothing to do with Coroners or Police).

2) I want clinicians and their organisations, to explain to patients, how exactly a person can successfully use a written Advance Decision (ADRT) to refuse attempted CPR 'irrespective of what caused the arrest, and irrespective of how unexpected the arrest (CPA) was'.

The first thing to sort out, is where does the risk of a written ADRT being followed, rest ? In my opinion, the risk rests with the author of the ADRT - if I create an ADRT, and get it witnessed, etc, then I clearly want 999 Paramedics to 'follow my instruction' if it is PRIMA FACIE valid. 999 Paramedics, on the other hand, want to 'confirm the validity of the signatures, etc' - that isn't, in my opinion, acceptable during a CPA: the whole point of my creating an ADRT refusing attempted CPR for a 'sudden CPA', would be that I couldn't 'talk to the clinicians if I arrested'.

3) I want the NHS to stop stressing and emphasising within guidance and protocols, the difference between professional and lay carers, and instead to emphasise that 'the small group of people who have got the physical opportunity to talk to the patient and each other on an ongoing basis, should understand the situation in a 'holistic way' better than anybody outside of that group. I call this 'tight group surrounding the patient' the Core Care Team, and it is properly explained in my piece More Conversation Less Confusion'. But is is also explained in the post at 15/03/14 - 15:32 (labelled Poser no 8) at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=692&forumID=45

There is an explanatory file which can be downloaded from a link there. The 'fundamental question' is:

Currently, the NHS tends to have a sharp distinction between the professionals and the relatives, for end-of-life situations, and to me this is entirely the wrong 'separation' for EoL while the patient is at home: the correct separation is between the live-with relatives, the GP and regularly-attending district nurses, who are all involved in an ongoing way and who should really be talking to both the patient and to each other, and other professionals who are only temporarily involved (such as 999 Paramedics).

I have written this up in a rather lengthy PDF, and that PDF has been 'flung' at quite a few people recently: I describe the GP, live-with relatives and regularly-attending district nurses as the Core Care Team and I think this change in 'professional mindset' is necessary for EoL care and behaviour to really change for the better.

After all, we must surely start by assuming that the clinicians and live-with relatives, are all 'trying their best to help the patient' - if you introduce this 'Us & Them' attitude instead of 'Us & Us', people tend to stop talking to each other 'openly': and restricted communication, leads to things like confusion and suspicion, and worse outcomes and worse behaviour.

So which should matter the most ? Who is 'professional' and who isn't, or who is in close ongoing contact with the patient and who is only temporarily involved in the patient's care.

Although this matters the most for patients who are at home, if adopted for home patients, it would have 'knock-on' consequences for EoL patients who were in hospital as well, because of the necessary change of mindset.

The 'rules' for Core Care Team behaviour, were explained in More Conversation Less Confusion:

1) Everyone in the CCT, and the patient, must attempt to keep talking to each other, sufficiently that nobody is deprived of any information that person would 'reasonably need to know' - so the stress is on 'keep talking to each other, as openly as possible, because if you don't talk, then confusion and false assumptions can easily be the result'.

2) This does not preclude record-keeping, but it downgrades written
records to a status secondary to an explanation of a record, given by
anyone within the CCT who says 'that actually means ....'. So, the
second implication is that everyone outside of the CCT, must be instructed to believe what anyone within the CCT is saying, as the default position: paramedics must be told to believe what LWRs (live-with relatives) are telling them, even if the information is not supported by records (because a patient-relative conversation, can have taken place but not yet been recorded: there is also an issue, in that currently the NHS seems determined to only allow specified professionals to up-date records, and you cannot write something down in real-time, if you are not present !).

3) The professionals must, if they think a relative has done, or said,
something 'strange, confusing or wrong', ask the relative why it was
done or said. And the professionals must tell the LWRs 'to ask us to
explain why we are doing things, that seem wrong or inappropriate to
you' (see Note 1).

As I explained in MCLC directly after those 3 'rules':

COMMENT: A downside of process-based behaviour, the approach currently taken by the NHS to cover this area, is that it inherently promotes confusion - because there is no way that patients and relatives can be familiar with 'the process'. The CCT concept, forces everyone to talk to each other, and to develop within the CCT a 'process' which will work for the group as a whole, on a case-by-case basis - inherently, that makes everyone discuss and understand 'the process'.

SECOND COMMENT: The MDT approach, separates clinicians and (for VoD {Verification of Death protocol} design) other professionals, from patients and relatives, and consequently things such as EoL guidance and CPR/VoD policies are written by groups of, usually, only professionals.
Also, hospital-based clinicians, perhaps because hospitals are
inherently more 'structured' than primary healthcare, seem to be writing guidance which then 'bleeds out into primary settings': so hospital-based nurses and doctors, are formulating the behaviour sets for EoL patients who are in their own homes. Within a hospital, doctors and nurses are always present, and should be able to successfully implement 'a known process' - but EoL at home, should have a belief and behaviour set which is being designed by the people involved: by GPs, patients, LWRs, DNs and paramedics. The CCT concept, if adopted, would promote that change to the way guidance is created.

WHAT I WOULD LIKE TO HAPPEN

a) People outside of that Core Care Team, to understand how little they understand about 'dying'.

I had a discussion with the Detective Inspector who is the senior CID person at the police station which 'supplied' the police officers who couldn't understand why I saw no need to 'react immediately' when my mum arrested/died at the end of her 4-day peaceful terminal coma. I could grasp at all, why I needed to (as opposed to, might decide to) 'phone someone immediately'. It made much more sense to me, to check that my mum had died, and then to call the GP I knew 45 minutes later [when I was sure she would have arrived at the Surgery], than to involve a cover GP just before Surgery hours. I didn't know, that she would have taken the day off and disappeared to Europe.

But this Detective Inspector, was CERTAIN that 'death from a coma is still a shock', because 'family and friends who have had loved-ones die from comas, have told me that'.

When I asked 'Where - at home, or in hospital ?' it turned out that all of these people's loved-ones had died in hospital.

DEATH FROM A COMA IN HOSPITAL IS NOTHING LIKE DEATH FROM A COMA AT HOME: my dad was 'dying' for several weeks in hospital, although he got himself discharged and actually died about 30 minutes after returning home. I was very stressed indeed, when my dad was very ill in hospital - the only time I was less stressed, was during my visits to the hospital. That particular stress, is because 'you are unsure' - I didn't have that, when my mum was comatose at home [because even before the question 'Has she died' troubles your unconscious, you just walk into the room and check].

I've come across even some HCPs who didn't immediately see this particular difference - until the professionals understand that type of thing, they (and especially the police) are prone to 'using the wrong mindset'.

b) I would like much better agreement and guidance, for the Mental Capacity Act. I recently received an e-mail from a medic which started with:

'Not much to argue with in the pdf! We seem to think along the same lines

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