I believe that Advance Decisions should be encouraged but that 'advance statements' should be discouraged

I am currently involved in an e-mail debate, about something of sufficient importance, that I would like it to be online [so that I can 'point people at it'].

A few weeks before Christmas, I became aware that various 'clinical websites' are promoting not just the Advance Decisions described in the Mental Capacity Act (these are legally-binding, reclaim the decision-making for the patient, and I LIKE them) but also things they described as 'advance statements' (not legally-binding, and these do not reclaim the decision-making for the patient, and I DISLIKE them) - these websites are also describing documents which combine those two different things (an idea I am not at all keen on) and calling the combination 'a Living Will'.

I am not sure that I'm winning the e-mail argument, so I've just written something about how my personal experience of my mum's death influences my position about this - I'll cut in a text version of that, which I'm about to send out by e-mail as a PDF document, shortly. But I have given a really quick argument about why I dislike 'advance statements' in my BMJ piece at:

http://www.bmj.com/content/351/bmj.h6631/rr-0

I wrote in that piece:

'Clinicians and administrators seem to be wedded to the idea that decisions about the provision of treatment eventually devolve to the clinicians, whereas judges are increasingly stressing that the individuality of the patient sits above the clinical situation of the patient. So 'the system' has gone well beyond any concept within our law which could be described as 'an advance statement' and is now creating guidance which encourages end-of-life patients, while still mentally capable, to 'express your wishes via 'advance statements''. The implication, is that by reading a few documents, clinicians such as 999 paramedics could somehow 'come to understand a patient, in the way that the patient's close family and close friends understand the patient': this is absurd, and the guidance should instead stress 'ask the people who do know the patient as an individual, and believe what they tell you'., and 'verbally explain to the clinicians and family carers who are supporting you in an ongoing way, your probable wishes for the future'.'

What follows, is the 'argument from my personal experience' which I will be sending out to various people by e-mail - I will try to sort out any 'pasting into DIC issues' (but no promises).

This is an IMPORTANT ISSUE !

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Dear Everyone,

I want both the My Living Will and RCGP folk, and the MCA Forum 'listening event' people, to be clear about why my position is so strongly in favour of Advance Decisions, and so set against the promotion of [written] 'advance statements'. So I've decided to send this to all of you at once.

Most of the following, was on my computer from when I sent to it someone a couple of years ago, so I can just add a bit to it - I normally avoid detailing my own experience, and I prefer to work 'analytically from the law', but this might make the point more simply. This is what was on my computer.

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I'm not all that bothered by the events surrounding my mum's death, in personal terms (although I did end up notably depressed for a couple of years: a new and 'academically interesting' experience, but I wouldn't recommend it to anyone as a learning exercise).

My own problems started when my mum died at 8-15 am on a Friday, and I wasn't sure if the GP arrived at the surgery until about 9am. As the answer to my 'what do you want me to do when my mum dies' question [which I put to the GP, once my mum had become comatose] had been 'call me at the Surgery, or tell the cover GP it was an expected death - there will be no police', I decided to wait until I was certain my mum had died, then to cancel the day's planned DN visit and to call out the GP to certify. So I called the DNs at about 8-50am and left a message on their answer-phone, then called the Surgery at about 8-55am: the GP had taken the day off and disappeared to Europe as the start of a long weekend, and the receptionist told me to call 999 (the surgery was busy, and the analysis of why the receptionist did not connect me to another GP who was present, is very interesting but not particularly relevant here), so I did. I told the 999 operator that I did not consider this was an emergency, the Surgery had told me to call, etc: she sent a 999 Crew but didn't tell them that I did not see this as an emergency, etc. So a 999 Ambulance came screaming up, and the paramedic I was involved with (who I think was used to working in Sandwell, which had a developed CPR/VoD policy: Coventry didn't, and my mum's GP didn't write stuff about 'expected death/DNACPR in patient notes') started very badly, by telling me that 'because I was called, the death was sudden' [despite my telling him that the GP had told me to describe the death as 'expected' to any cover GP].

Anyway, I was 'bothered' by the police (taken to a police station, questioned as if I had perhaps murdered my mother, etc), who that paramedic almost immediately called in, for 7 hours: our 'conceptual difference' was mainly over whether 'I should have called someone immediately my mum died'. My mum had been comatose for about 4 days, and I knew (I'd asked her, effectively - see below) that she 'wanted to be left alone to die'. I couldn't quite see how a CPA from a 4-day terminal coma, was 'any sort of emergency, or how that called for any type of immediate action' {I'm not saying that most relatives wouldn't call someone immediately - I'm saying, it depends on the relative} - the police couldn't grasp that (and they also confuse coma in hospital, with coma at home - very different).

To further complicate matters, the lead DN and another did turn up, and the paramedic then asked her 'Was it an expected death' and I'm pretty sure the nurse answered 'Yes but not necessarily today'. I'm not 100% sure, because the PCT supposedly investigated this, and I was told that the nurse 'thought she had said "Yes it was an expected death" but she apologised if she had said something different. When I asked the PCT 'What does the paramedic think the nurse said' the PCT hadn't asked - and before my (subsequent) WMAS contact could ask, that paramedic had left the employ of WMAS.

As a PS, there is no way of 'proving' a person-to-person conversation happened, if before it is recounted one of the two people has become incapable of communication: if I tell you that 'My dad explained that he definitely doesn't want CPR any longer, when we talked last night, but now he has apparently arrested before this could be sorted out with the GP' then either you believe me, or you effectively accuse me of lying - this is a moral and ethical question. But if you go for the 'we will tell 999 to tend to not believe you', then besides that position being morally obnoxious, how does it promote co-operation ? And you cannot 'hide your position' these days: there are lots of policies and protocols on the 'net, so it simply isn't like it was 50 years ago - laymen can 'see what you are doing' much more easily, these days.

I'm deeply annoyed that the GMC had the nerve to tell me (a few years ago), that I couldn't know what was in my mum's best interests [because I wasn't an HCP]:

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 accept 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 wouldn't do anything at all, as my mum 'refused to be touched').

Dr Smith, the GP, prescribed some antibiotics and energy drinks, but my mum wouldn't take them. While Dr Smith had been trying to examine her, my mum had been pushing Dr Smith 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'.

That was the last thing she ever said to me. My brain cannot cope easily with 'recalling' that : you want to 'file and forget' the answer to the question, but not the 'you know I love you' part - that is a tricky thing for your brain to handle. Unfortunately a problem with the medical notes, and a useless subsequent PCT investigation, forced my brain to keep 'running past' that event a few months later - that really damaged my brain, as it happens.

That was on a Friday, and by the time the GP next visited, my mum was already totally non-communicative - so the GP couldn't have asked my mum about that conversation: however, as Mr Butler commented, "Frankly, I don't give a damn [I'm not interested in what you know - I know !]". The GMC, seem to think that somehow 'lay relatives cannot know what is in a patient's 'best interests'' - my response is best not written down.

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The point is, that although I wasn't a welfare attorney for my mum, I could have been - and if I had been a welfare attorney, with decision-making authority over treatments and best-interests, then my best-interests decisions would be carry the legal weight of sections 6(6) and 6(7).

So, I CAN IMAGINE that I might have been a welfare attorney, with such decision-making authority.

I already knew - using knew as in 'knowing from everything about her behaviour, short of having directly asked her or been explicitly told by her' - that my mum had decided she wanted to be dead, as opposed to being alive and even older.

But - see above - when she refused to take the medications, I STILL NEEDED TO ASK HER DIRECTLY, BECAUSE I 'NEEDED TO BE CERTAIN'.

So, my position is very simple, and it can be expressed as this:

Even if you are a welfare attorney and legally-empowered to make the best-interests decisions, making life-or-death decisions about the life of a loved-one IS AN AWFUL CHALLENGE AND BURDEN - it is better to get the decision from the person, and to thereby AVOID making a decision yourself.

This EQUATES TO 'promote the making of Advance Decisions by patients' and it does NOT equate to 'promote the creation by patients of 'advance statements' which still leave someone other than the patient as the decision-maker'.

I would go so far - even if this upsets some people - as saying that I can't see why anybody (relative, medic, or whoever) who isn't psychopathic, would prefer to make life-and-death decisions about somebody else (i.e. be a section-4 best-interests decision-maker) if it were possible to get the patient to make the decision, and for you to then just follow the decision.

http://www.bmj.com/content/347/bmj.f4085/rr/652862

'I frequently discussed these issues with the former Head of End of Life Care at the Department of Health, Tessa Ing, and there are some very complex issues about decision making once patients have lost mental capacity, but in my opinion Tessa was spot on when she wrote (discussing some publications):

'... if they're used they will go a long way to making the problem disappear, because once the right people start talking to each other in individual cases - patients, families, professionals and all - you hugely shrink the number of instances where the technicality of who legally decides what is legally important.'

A huge advantage of talking to patients 'early', is that you can get clear decisions from the patient about things such as attempted cardiopulmonary resuscitation in the future - then, you can tell everyone involved what the patient has decided, and everyone can just follow the patient's decisions, which is much less challenging than to try and make decisions in lieu of the patient, whoever is trying to make such 'proxy decisions'.'

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