The April 27th Edition of the BMJ has a theme about the Dying *** and the Poser series of questions

Hi in my opinion i think that the family should have a meeting with all the consultants involved and discuss there options first to see if any more can be done for the person thats involved if every thing possible has been done then the family and the consultants should go and tell the person in question that they only have hours or weeks to live why i think this is because i had to go thou some thing last year when the hospital told me my husband only had 2 hours to live and he had never been ill in his life it was very sudden.

Thank you Debra.

I very strongly feel, that people do need to be told about 'when you are going to die' so they can prepare properly - it is really upsetting for many relatives, if 'we were told too late, and couldn't properly say goodbye', etc.

Here was the consultant's answer to the 'poser' above (no 1), about 'confidentiality':

'This is a precise illustration of why written law isn't everything and clinicians operate in a grey area. I would say there is a bit of pot luck for a member of the public in terms of do you happen to see an experienced, mature, thoughtful, reflective clinician who looks behind the obvious or not. Speaking for myself and some of the colleagues I respect most, we would always probe, prompt, explore, challenge to make absolutely sure the patient (or family member) was fully aware of the decisions they were making and the background to them and ensure we came back to allow time to reflect.'

Now, here is 'poser no 2'.

When my parents were dying, although I didn't want them to die, I knew they would die: and my personal position, is that the patient's own choices should be supported. I am not very 'empathic' - I'm probably more 'analytical' - but when this one struck me, I concluded that in this situation, I would probably go with 'the empathy' and not with 'the clinical logic'. If you were the relative, what would you do, here ?

Does anyone have a 'take' on this ?

Even though I think a 'keep your principles simple and clear' method makes sense, there are two different types of principle: the legal/logical type, and the 'pragmatic' type.

This has never happened to me, and it took me a while to realise what my position would be (probably - you are never sure, until you are actually in the situation), if it had - it illustrates the difference between a logical principle, and a 'pragmatic' principle.

Although (as I've demonstrated) it is quite easy to show that 'clinically pointless' cardiopulmonary resuscitation (CPR) should, nevertheless, be attempted if you separate the lack of benefit for the patient, from a benefit for someone else, in general my position was 'the guidance is right, when it says that CPR should not be attempted, if it is certain it would fail'. Logically correct.

But I couldn't go with it, if I were a relative and the patient still wanted CPR to be attempted.

If I was at home, with a dying father, and he still wanted CPR to be attempted, even after a GP had told him it would be 'pointless and damaging', I cannot 'refute' this chain. If my dad said ' I still want them to try CPR - I want you to call 999, if you think I'm dying' then as his son, I would not be willing to argue with my dying father.

So my answer to my dad, would be 'If you want me to phone 999, then I will'.

If the GP then talked to me, and said 'You know CPR wouldn't work - you aren't really going to phone 999, are you ?' then my answer would be 'Yes, I am - I'm not going to tell my dying father a lie, and live with that deception: for this, I am not willing to argue with my dad, or lie to him, so having told him I'll phone 999, however pointless it may be, I'm going to do it. If you are right, attempted CPR will fail - my dad wants it tried, and I don't expect it to work - but I'm not going to argue with him, or lie to him, so you'll just have to prove it'.

It took me ages (over a year) before I even stumbled on that analysis, because the 'logical principle' for unsuccessful CPR is so obvious - but even so, in reality, I'm sure I would go with the pragmatic principle, if I were a son, in that situation !

This is 'poser no 3'.

The NHS has identified several problems, which affect people who are old and very ill: one problem, is that old people who are at home, are approaching death, and who wish to stay at home and die there, often end up being taken to hospital by paramedics, when ideally they should be left in their own homes.

As GPs are now being tasked with identifying patients who are expected to die within the next year, the NHS has been trying to store information about these 'end-of-life' patients, so that it can more easily be accessed by the 999 services and others: originally this was called Locality Registers, but now it is called Electronic Palliative Care Coordination Systems (EPaCCS).

There is ongoing development of EPaCCS, and a recent document (ISB 1580) is about 'core content standard specification' - things that all EPaCCS should contain (there can be other bits, added locally). The point of EPaCCS is explained:

'Improving the co-ordination and quality of care provided for people at the end of life is the major aim of the DH End of Life Care Strategy [1]. This standard supports communication between providers (such as out of hours and ambulance services) about end of life care plans so that more people are supported to die in the place of their choosing and with their preferred care package.
Approaches to communication between providers of end of life care vary widely and depend on local service and system configuration. In some areas, this communication is being implemented through electronic palliative care co-ordination systems (formerly known as end of life care locality registers), as recommended in the strategy. The standard specifies the core record content required to support communication and coordination of end of life care so that information can be implemented accurately and consistently in electronic record systems, irrespective of the local implementation approach.'

THIS IS THE POSER:

The fourth of the core contents items, is 'Main Informal Carer' - this document, seeks to identify a lay person (for example a wife, or son, etc) to be identified and listed as 'the main informal carer', and this person is defined as 'The individual, excluding paid carers or carers from voluntary agencies, chosen by the person to hold major responsibility for providing their informal care and support.'

Now, imagine that I am an 85 year old widower, who has got three adult daughters, all of whom are involved to a similar extent in supporting me - WHY ON EARTH, would I be willing to accept that one of my daughters could be described as 'my main informal carer' ?! Why would I be willing to have one of my three, equally loving, involved and caring, daughters, called 'the MAIN carer' ? And if I were one of these daughters, why wouldn't I reasonably expect the NHS to DIRECTLY keep all three of us, updated about anything important that we needed to know ?

SURELY, IN A PATIENT-CENTRED SYSTEM (as the NHS claims to be) IF A PATIENT AND HIS CARERS SAY 'there isn't a 'main' carer - you will have to list three of us as ALL being 'main carers'', THEN THAT HAS TO HAPPEN !

This is poser no 4.

In these modern times, some highly-qualified nurses are able to prescribe drugs, and effectively to 'treat patients independently (from doctors)'.

Now, this means that it is possible, in theory, for the same type of aptient to receive treatment from either a junior doctor, or from a nurse - but doctors and nurses have got 'different 'models and ways of thinking''. If modern treatments are intended to follow evidence-based principles, in theory shouldn't the 'best treatment' be defined without reference to who provides it - so, would it be possible for the patient to distinguish between being treated by a nurse, or by a doctor, if the professionals had not told the patient 'I'm a doctor' or 'I'm a nurse' ?

And if the answer is 'No - the patient would not be able to tell', then what is the difference between the doctor and the nurse ?

Here is poser no 5.

There was mention in the BBC Radio 4 6am news yesterday, of the death of Mrs Jean Robson in what the coroner called 'a disturbing case'. See:

http://www.bbc.co.uk/news/health-22894755

Now, it highlights an awful lot of issues around end-of-life and CPR behaviour, but this one is interesting, because I've never seen the following analysis anywhere. The report includes this:

'The Royal Devon and Exeter NHS Foundation Trust said: "Whilst the discharge summary did not contain specific reference to Mrs Robson's DNAR status whilst she was in hospital, the DNAR order could not have been used to withhold treatment in a community setting.'

I'll slightly simplify this analysis, to keep it short - but both refusals from the patient, and properly-discussed section 4 best interests DNACPR conclusions, ARE essentially transferable.

What that Trust has noticed, is that 'clinical DNACPR decisions' (an expert medical opinion that even if CPR were attempted, it would fail, because of the pre-existing clinical situation of the patient before the arrest occurred) present problems when the patient moves locations: and this is because the expert clinician whose opinion the DNACPR is based on, usually changes when the location changes. The clinician who is clinically responsible for the patient - usually a consultant or GP - changes, but although that is correct, here we need to think about whether by not accepting that DNACPRs are location independent, are these clinicians questioning the clinical competence (re prognostic prediction)of their colleagues (the answer, logically, appears to be 'yes').

But what does that say, about the expertise of these expert clinicians ? If the clinical condition of the patient remains unaltered when the patient moves from hospital to community, but the expert opinion about whether CPR would inevitably fail or not does alter, then some of these experts are necessarily wrong: if CPR were attempted the opinion of the clinician does not affect the outcome, it is the clinical condition of the patient which affects the success of CPR. So if these experts, who in different locations are claiming that CPR would definitely fail were all competent, they would all agree with each other: and if they all agreed, then clinical DNACPRs would be transferable.

You can fill in all of the 'complications' I've missed out in that simplified analysis (which make it much longer) but you still arrive at the same conclusion: if you claim that clinical DNACPR decisions cannot transfer across locations, then you are implying that the clinicians (as a group) who are making those decisions are not sufficiently competent to make them.

You can put that another way - you can argue that if my dad is ill in hospital, a doctor tells me that he will not be resuscitated 'because CPR would fail' and the wider region does NOT recognise the hospital's DNACPRs as being valid if my dad moves to a care home, then I can validly say to the doctor 'I'm not having that - the system itself, questions your competence with respect to predicting whether CPR would fail'.

This is 'poser no 6' - more complicated than the others, because I'm asking if anyone can find a logical flaw, in my legal analysis and synthesis of the justification for Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions. I would like comments, but in part I am posting this so that I can point people at it, during e-mail discussions

It is a well-established principle of English law, that mentally-capable patients have got the legal right to refuse any offered treatment, even if the refusal would result in death, and without explaining why they are refusing: this can be extended to the refusal of a future-but-anticipated treatment. The way the Mental Capacity Act dealt with those 'future refusals' is causing a problem, which I've tried to deal with in my 11/04/13 13:32 post within the discussion at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=665&forumID=45

When you apply 'some logic' to the law, I think you are forced to conclude that a written Advance Decision (ADRT) is necessary to refuse a life-sustaining treatment, such as CPR, because the ASSUMPTION (within the Act )is that you might FIRST read the ADRT only AFTER the patient has ALREADY lost mental capacity: if you are 'enveloping the patient in a treatment situation' {for example, inside a hospital, or within EoL care at home} then the patient can just tell you, verbally, that he is refusing an anticipated (by the patient) treatment. This is true for both clinicians and laymen - a patient could explain to a GP that he was refusing future CPR, or he could explain that to a relative who was living with him. it is, after all, th epatient's decision - he then needs to tell whoever is available to be told, and the patient obviously cannot tell people who are either not present, or cannot immediately be contacted.

So, I cannot see any way, that the Justification Hierarchy for DNACPR does not come out like this:

The DNACPR Justification Hierarchy

1 A face-to-face discussion with a mentally capable patient, which takes place during the clinical events which lead to his CPA, the outcome of which is that the patient issues a DNACPR Instruction which those who were involved in the discussion can interpret correctly

2 An apparently valid and applicable Advance Decision refusing CPR which has not been discussed with the patient

3 A DNACPR decision made and communicated by either a single welfare Attorney (where only one has been appointed), or agreed and communicated by all Welfare Attorneys

(Note: for non life-sustaining treatments, a Court Deputy can fit here between 3 and 4 - see section 20(5) of the Mental Capacity Act))

4 A DNACPR decision made by any person who is sufficiently informed of the patient's clinical (and possibly wider-life) situation and likely wishes, to enable that person to defensibly consider section 4 of the MCA.

5 A DNACPR action, which is based upon information supporting the reasonable belief that something within categories 1 to 4 makes DNACPR the best available behaviour

6 If none of the above apply, but it is clear that attempted CPR would be clinically futile, then DNACPR

7 If none of 1 to 6 apply, CPR should be attempted

Once one understands the above, it becomes possible to work out the answers to various questions: for example, it becomes apparent that the purpose of a DNACPR Form (the things currently signed by senior hospital doctors or GPs) fits in at no 5, to somehow make/persuade clinicians who are not 'deeply involved with the patient' not attempt CPR {for example, 999 paramedics if patients arrest at home}; it also seems, at least in conceptual terms, to be necessarily true that 1 is not 'a best interests decision' but is simply 'normal Informed Refusal'; that 6 and 7 are not MCA section 4 best interests decisions (and note that 'futile' means 'would not be clinically successful' - it doesn't mean 'would result in an unacceptable quality of life' because that WOULD be an MCA best interests decision).

In fact, it turns out that only 3 and 4 are 'true' MCA section 4 best interests decisions - and the reason, is section 4(9) of the MCA, which says this:

'In the case of an act done, or a decision made, by a person other than the court, there is sufficient compliance with this section if (having complied with the requirements of subsections (1) to (7)) he reasonably believes that what he does or decides is in the best interests of the person concerned.'

The point is, that 'reasonably believes' - 1 is 'simple Informed Refusal' because the clinicians could not conceivably be any more certain, that the patient had refused the treatment (and losing mental capacity when one arrests, cannot make a previously-expressed refusal of CPR invalid, because if it could then ANY previously-expressed refusal, verbal or written, could be questioned on that ground); 2 is not a section 4 best interests decision because the Act itself tells us, that a written-but-not-discussed refusal in the prescribed form should be followed as a valid refusal from the patient; 3 and 4 ARE genuine MCA best interests decisions, because having complied with section 4 of the Act, the person making the decision 'reasonably believes' {but is not 100% certain - the crucial difference which sets this apart from 1} the decision is correct (according to me, this equates, usually, to 'I am sufficiently convinced that had the patient been able to decide, he would have chosen the option I am taking'); and 5 cannot be a section 4 best interests decision, because the people who need to read a DNACPR Form, were not involved in its creation, and therefore cannot have 'properly considered' section 4 of the MCA.

If anyone can highlight any logical flaw/s in there, please post the analysis for me to read.

This is 'poser no 7'.

Is this piece of analysis correct, or not ?

Unusually, section 3 of the Mental Capacity Act (MCA) is about interactions while patients possess mental capacity, while most of the Act is about behaviour while patients lack capacity.

To a simpleton like me, sections 4(7) and 4(8) do say 'everyone get their heads together, and try to come up with the best decision' - but, that of necessity would require disclosure [to family and friends] of clinical information (prognoses). Most of the clinically-authored literature, tells HCPs that they can disclose 'unless the patient has forbidden this'. The clinical literature, does 'see the conflict here' between the MCA's section 4 best interests objective and patient confidentiality, but then things become 'fudged'.

If the patient had forbidden disclosure, but had not him/herself made the relevant decision about treatment in advance, this makes it impossible to apply section 4(6) - without breaking confidentiality, all that is left is section 4(5) {the duty to preserve life}.

It doesn't look, to me, quite that simple.

Nobody seems to point at, section 3(4)(b) of the MCA:

3(4) The information relevant to a decision includes information about the reasonably foreseeable consequences of-
(a) deciding one way or another, or
(b) failing to make the decision.

It strikes me, that there is a choice here: if a patient forbids future disclosure of his clinical situation/prognoses, but doesn't also make all of the necessary decisions in advance, then doesn't 3(4)(b) leave the doctor with two options ?

Surely doctors can say to the patient either 'If I do not break the confidentiality, I cannot apply the MCA's best interests process, so I'll have to simply try to keep you alive as long as possible', OR doctors could say 'If you will not tell me what your decision would be, I'll be forced to break patient confidentiality as part of the decision-making process laid down by the MCA'.

I made a mistake while typing Poser no 7.

'To a simpleton like me, sections 4(7) and 4(8) do say 'everyone get their heads together, and try to come up with the best decision''

should read

'To a simpleton like me, sections 4(6) and 4(7) do say 'everyone get their heads together, and try to come up with the best decision''

I'm guessing that anyone who was deeply-enough involved in the debate about the MCA, would have already realised that, but just to be clear I'll correct it.

Here is Poser no 8.

For end-of-life patients who are at home (end-of-life means 'sometime within what is predicted to be their final year of life), which 'integration' is the more important: communication and discussion between the patient, the GP, the people living with the patient (from now on I'll call those 'live-with relatives') and any visiting district nurses, or connections (which will of course be in the form, paper or electronic, of notes only, for many time-pressured situations) between the GP & district nurses and 999 Paramedics ?

You can also look at this one, in terms of 'can 999 Paramedics, from looking at notes, be expected to understand 'the overall situation' as much as the live-with relatives should be able to' ?

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.

In Poser no 2, as an 'aside' I mentioned something I think could be unclear or confusing:

Although (as I've demonstrated) it is quite easy to show that 'clinically pointless' cardiopulmonary resuscitation (CPR) should, nevertheless, be attempted if you separate the lack of benefit for the patient, from a benefit for someone else, in general my position was 'the guidance is right, when it says that CPR should not be attempted, if it is certain it would fail'

I'll explain: provided the patient has consented to and requested 'pointless CPR' it is possible to construct a scenario, when attempting 'pointless CPR' seems unequivocably correct (and it would 'sharpen clinical minds' about whether clinicians can be 100% certain 'that future CPR would fail').

Here is one such scenario:

A patient, John, is at home, and his GP has told him he seems likely to die within 6 months, or perhaps a year.

John then says this to the GP.

'My wife, Jane, was previously married. Her first husband was involved in a car crash, he ended up comatose and on life support, and Jane was involved in one of those 'do we switch the machine off ?' situations.

It almost totally destroyed Jane, psychologically - it took her years to recover. I have discussed this with Jane's adult son, and my position is that I am 100% unwilling to risk a repeat of that, because I think it would destroy Jane, mentally. Her son agrees with me, so this is my primary position - I am totally unwilling to risk a CPR attempt, if there is any chance at all that I would then be comatose and on life-support.

I also don't want you to tell Jane about this, because Jane would say 'you should try CPR if it might work'.

But, if you become 100% certain that any future CPR attempt could not possibly succeed in re-starting my heart, at that time I want you to tell both Jane and me about that.

Because we have a 15 year old daughter, Laura, and Laura has learning difficulties. Laura is a big Casualty fan, and she thinks CPR works.

So, if Laura finds me in arrest, or 'just dead', she is going to phone 999. If 999 turn up and do nothing, Laura is going to struggle to understand and accept 'they did nothing - they didn't try to keep my dad alive'. She would find it much easier to accept 'they tried but it didn't work'.

So, provided the CPR would definitely not work, if Laura is the person who phones 999, then I want the paramedics to attempt CPR, for Laura's sake'.

COMMENT: the ethics and law of this, seem blindingly clear ! But what the heck, does the GP say and do ?

I don't like the implication within most clinically-authored material, that doctors make the decisions - but I strongly believe that GPs are supposed to be 'organising the care co-ordination'. But I'm certain, most GPs would struggle to organise that one !

Mike what a dilemma - a very tall ask. Is this part of a living will/advanced care plan?

Hi Jan - for some reason, I only just noticed your comment. I'm puzzled that I hadn't spotted it earlier.

The one with the daughter with learning difficulties (my Civil Servant contact, said 'You've got a mind like Agatha Christie', when I originally sent that one to her) is something where what should happen is obvious 'on paper' - but it is probably impossible to actually get the 'best behaviour' to happen in real-world situations.

I originally wrote that one, when I was annoyed that for 'futile CPR' doctors use 'we know cardiopulmonary resuscitation would not re-start the heart' (but, see the link below for a bit more on that) as a reason to not attempt CPR. I was simply trying to switch that, to 'You should attempt CPR ONLY IF you are CERTAIN IT WOULD FAIL' - mainly because, posed that way round, the doctors would [I suspect] be saying 'we can't be CERTAIN CPR would fail !'.

Almost all medicine 'isn't certain' - people should explain and consider the uncertainties, not claim they don't exist.

There is also the same sort of issue around 'uncertainty' in end-of-life at a fundamental 'approach' level. The overall approach to EoL, does involve GPs 'identifying patients who are likely to die within the next 12 months' - then these patients can be involved in things such as EPaCCS, ACP, etc. But as soon as medics start discussing 'should assisted dying/suicide be legal' - Lord Falconers Bill - medics like Professor Rob George chip in with 'the Bill proposes to apply to patients in the fianl 6 months of their life - but we can't tell, if a patient has got 6 months to live'.

So the DH approach, involves identifying patients who 'will die within 12 months', but as soon as you get the assisted dying Bill, lots of medics say 'we can't do that becasue of the uncertainty'.

It is a flawed line of reasoning: you can never get better than 'We think you will probably 'whatever'' (where 'whatever can be 'die within 6 months', die within 12 months', 'get better', 'not get better', or whatever). You can qualify 'probably' with 'degrees of certainty' - but that will almost never be '100%'.

You cannot sensibly use 'we can't be certain' - otherwise, you couldn't ever make any decisions at all !

http://www.bmj.com/content/348/bmj.g4094/rr/702748

Poser no 9

Cardiopulmonary Resuscitation (CPR)

There are some 'definite issues' around CPR, and one of these issues, is one 'solution' that doctors who care for the very elderly seem to propose. Everyone agrees that CPR is very unlikely to be successful for the very frail elderly or for patients who are near to death. But some doctors who specialise in caring for very elderly patients, argue that CPR should not be considered a suitable treatment for their patients.

I recently read two very similar comments about CPR. In the neurosurgeon Henry Marsh's book 'Do No Harm' he writes:

'The reality of cardiopulmonary-resuscitation is very different from what is shown on TV. Most attempts are miserable, violent affairs, and can involve breaking the ribs of elderly patients who would be better left to die in peace'

Writing on BMJ a consultant physician, Gordon Caldwell, writes:

http://www.bmj.com/content/350/bmj.h2640/rr

'I do complete DNACPR forms, but only to protect my patients from the most undignified form of dying that I can imagine being practised by the Medical Profession. We have got to the point where a person will have Full CPR done on him in hospital at the time of dying, unless a DNACPR is in place. Full CPR in frail patients inevitable results in fractured ribs, and usually leaves the body deceased, naked, bruised and undignified.'

Now, the 'big complication' with CPR, is that if CPR is not attempted, a patient whose heart has stopped pumping blood, will quickly die - but the barriers to 'talking about death' make it very difficult to ask a patient 'Would you want us, to attempt CPR, or to just let you die ?'. In fact, if we could somehow get the answer to that question from patients, I think the problem would largely go away.

Gordon Caldwell, seems to mainly object to the physically violent part of what he terms 'full CPR' - he objects to the chest compressions, which are necessary to 'pump blood to the brain'. He doesn't seem so reluctant, to attempt electrical, or chemical (injection) methods of restarting the heart.

This is poser no 9 - does this argument, suggest that CPR should not be a default treatment for 'elderly' (as opposed to 'known to be very ill') patients who arrest in their own homes ?

I think it is the case, that as people become older, their bones become weaker - I'm not sure, but I suspect that most people who are (for example) aged 75 or older, would be much more susceptible to physical damage from those 'violent chest compressions' than young adults are. But your brain, starts to die (or put another way, to become increasingly damaged) within 2 or 3 minutes of your heart stopping. So, if you are elderly and you arrest in hospital, perhaps the 'gentler' methods of CPR (without any chest compressions) could be tried inside a couple of minutes. But that is very unlikely, IF you are at HOME - it could well take more than 2 or 3 minutes for 999 paramedics to reach you, if you arrest in your own home: and WITHOUT the 'violent chest compressions' your brain will be dying, while you await the arrival of 999.

So doctors, seem to want 'special rules for elderly and frail hospital patients' - but isn't the logic of this, that it should be more about 'different rules for patients who are at home, as compared to in hospital' ?

I would add, that 999 paramedics seem to default to attempting CPR, far too often at present: as I've said, the problems with CPR could be much improved, by getting the decision from the patients and then just following that decision, if only that could be done !

This is poser no 10

Should a decision be looked at from the perspective of the decision, or from the perspective of the decision-maker ?

I was recently reading a 'blog', where the well-known organisation in question wrote that the same-sex partner of a mentally-incapable gay patient, should be consulted by professionals during best-interests decision making, 'because as his partner, you count as a relative'. The partner felt that perhaps he was being discriminated against.

As someone who writes about the Mental Capacity Act (MCA), and about how various professionals distort the MCA 'by projecting the perspective of their own job onto the Act', this is depressing. It depresses me, because the MCA doesn't mention 'relatives' or 'next-of-kin', or spouses, etc, in its description of who a decision-maker should consult:

(7) He must take into account, if it is practicable and appropriate to consult them, the views of-
(a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,
(b) anyone engaged in caring for the person or interested in his welfare,
(c) any donee of a lasting power of attorney granted by the person, and
(d) any deputy appointed for the person by the court,as to what would be in the person's best interests and, in particular, as to the matters mentioned in subsection (6).

There is no mention of spouses, etc, in there: we have anybody 'named by the patient to be consulted' (section (a)) and 'anyone engaged in caring for the person or interested in his welfare' from section (b). Section (b) is to my eyes, very wide-ranging - a lot of people 'could be interested in the patient's welfare', and that is why a partner should be consulted.

But - and this is why I'm writing this piece - the NHS likes things to be 'both definite and simple': so 'the NHS' likes 'wife' better than 'friend', etc, despite the wording of section 4(7)(b). The NHS also likes [or perhaps 'understands'] 'patient confidentiality' and 'clear process', and I admit these introduce a degree of complexity into the interpretation of section 4(7).

The end of section 4(7), explains why those people need to be consulted - the decision-maker has to try to apply section 4(6):

4(6) He must consider, so far as is reasonably ascertainable-
(a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),
(b) the beliefs and values that would be likely to influence his decision if he had capacity, and
(c) the other factors that he would be likely to consider if he were able to do so.

It is very difficult, to misunderstand section 4(6) - it is very clearly 'trying to work out what the patient, who cannot make the decision himself [because of mental incapacity], would decide if somehow he could make the decision himself'. So, it isn't easy to describe the concept there, in words, because of an 'inherent contradiction', but it is very clear - section 4(6) has got something to do, with 'the patient as an individual - it requires the decision-maker to 'get inside the patient's mind''.

One of the limited number of entirely clear things about the MCA, is section 6(6), and the fact that a suitably empowered Welfare Attorney makes the best-interests decision. As welfare attorneys could be laymen [and I think usually will be laymen] it is logical to assume that most laymen, if they read the MCA, should be able to understand it: which means that your opinion, and my opinion, about the meaning of section 4(7), is at least as 'valid' as the opinion of a nurse, or of a doctor.

So, what would you interpret section 4(7)(b), as meaning - who should the decision-maker, consult ? We do not need to analyse sections (a), (c) and (d), because they are unambiguous - it is only section (b), which we need to sort out.

I think - from my position of not having any 'NHS baggage' around 'patient confidentiality [ranks above the MCA]' or 'protocol' - that there is a very simple, and VERY POWERFUL, way of thinking about both section 4 best interests in general, and about section 4(7) in particular.

THINK 'FROM THE POSITION OF THE DECISION ITSELF'.

In other words, don't think 'we need to define a decision-maker, and the decision-maker should then follow an agreed process' (which is typical, 'of how the NHS and bureaucracy thinks') BUT INSTEAD think 'if there is a decision to be made, what can be done which would result in a better decision being made ?'.

So, section 4(7)(b) becomes:

'Consult with everyone available whose input, might lead to a better decision being made'

And the issue then changes from 'have I followed my organisation's advice about consulting the spouse' to 'how do I know that if I consulted this person who claims to be a close friend of the patient, something new and important would not come to light, which would improve the decision-making ?'

As usual, I don't necessarily see this, the same way as the professionals and their organisations/employers see it - but surely, 'it should be making the best decision, that counts' ?

As with most MCA-related issues, they would be sorted out virtually overnight, if every dying patient had appointed a Welfare Attorney with powers over best-interests decision-making.

This is poser no 11

Should decisions be made by whomever is logically the best-qualified to make the decision, when several potential decision-makers are present at the same time ?

I was recently sent, as part of a longer e-mail from a consultant hospital doctor, and in the context of a wider discussion hinging on the differences between patients who are at home and patients who are in hospital, the following:

'The common law already provides for the "necessity principle" where
doctors can apply life saving treatment to people acutely ill and at
serious risk without knowing whether or not they would consent because
the patient is too ill to do so and they don't have time to find out or anyone to ask (e.g. in someone bleeding to death or with dangerously low sugar readings or fitting repeatedly)'

Now, I agree about this principle, but I'm usually discussing behaviour for patients who are on some sort of 'end-of-life register': and, I often discuss the situation of patients who are at home, 'collapsed and unconscious', and when 999 paramedics and family carers are involved. The question, is rather more complex than 'does 'necessity' exist ?' - the question, is 'when is 'necessity' justifiable ?'.

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The legal defence of 'necessity' is based on 'justifiable ignorance'.

The legal protection the MCA offers to a decision-maker, is based on the application of an 'adequate understanding of the situation' and the ACQUISITION OF THAT UNDERSTANDING is an 'implied duty' within the Act.

If an unconscious patient arrives at A&E unaccompanied, necessity has to apply.

If an unconscious patient arrives at A&E accompanied by a family carer, the question is does the family carer's understanding of the situation make an application of 'necessity' inappropriate ?

If a patient who is on some sort of 'EoL register' collapses at home, and a family carer calls 999 to be more certain of the medical situation, isn't the family carer's decision about what should happen next (a decision, which the carer MUST defend in terms of the MCA's test - as a long-term carer for the patient, a failure to satisfy 4(9) of the Act 'would be negligence') logically 'better' than any decision made by a 999 paramedic which would be defended by 'necessity' ?

PUT SIMPLY, isn't a decision made by the person who understands the situation best (there, the family carer) the best decision available ?

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There was a report about CPR in hospitals published by NCEPOD, called 'Time to Intervene?' and the report can be found at:

http://www.ncepod.org.uk/2012report1/downloads/CAP_fullreport.pdf

Bertie Leigh, the Chair of NCEPOD, wrote a foreword to the report, and in his foreword he discusses 'necessity' - the relevant sections of the foreword are:

'It is well established that surgeons who operate without the informed consent of their patients are guilty of an assault and will be held to have acted unethically in the eyes of the General medical Council. There is no basis for asserting that different considerations apply to CPR: certainly there are emergency circumstances in which a doctor is entitled to assume that the patient would wish an attempt at CPR to be made. But that cannot defend a failure over a period of several days to find out what the patient's wishes may be, or where this is not possible, to determine the team's view of the patients' best interests. The surgeon will rightly operate when we arrive in the ED unconscious after a road traffic c[r]ash, but no-one supposes that as a result this entitles them to operate without our consent on another occasion.

It was in the hope of finding out how far that ethical obligation sounds in modern medical practice that I approached the report. Alas, the results are profoundly disappointing and as I read these pages I wondered how many of these interventions would be defensible if charged as assaults before the criminal courts, or as professional misconduct before the GMC. The GMC recognises that CPR should be administered in an emergency, but it is not good medical practice to fail to anticipate the needs of the patient before an emergency arises. If the failure is deliberate or reckless then I suggest that is arguably criminal.

As a lawyer, when I accept a client I have a professional duty to agree with them in writing what the objectives are, what the scope of my authority is to be and what the risks and benefits may be. Our increasing respect for the autonomy of the patient ought to lead the medical profession to embrace a similar course.'

I have written something similar, at:

http://www.bmj.com/content/350/bmj.h2640/rr-2

Where I wrote:

'So, this is what baffles me: why, for known terminal or EoL patients, does it seem that frequently 'clinical DNACPRs' appear, without any evidence of the patient's agreement to or refusal of CPR at an earlier date, when CPR might potentially have been 'clinically successful', being present in the medical records for the patient ?

So notwithstanding the problems associated with 'asking people if they would want to be resuscitated', there really is not [in my opinion] a sound 'legal defence' to the accusation that 'failing to ask patients about CPR early during known EoL, is effectively 'culpable negligence by omission''. By failing to ask for the patient's decision while CPR might still be successful, when there was the time and opportunity to ask, but also tending to then impose 'clinical DNACPRs' once [the clinicians consider] 'asking about CPR would be pointless', the clinicians are preventing patient self-determination. I would point at a hangover of 'medical paternalism' here, except that I am aware of how difficult it is to 'discuss the dying bit', as I have previously pointed out'

The current end-of-life guidance, does tell patients to explain what they would like to happen in the future to everyone who is supporting them - to the people who are living with them (typically called family carers, or by me, 'live-with relatives' [a term which includes people who are not relatives]) and to the clinicians involved, such as the GP and district nurses. The law makes provision for patients to create Advance Decisions which are intended to (but often fail to) project the patient's decision-making autonomy into a future period of mental incapacity.

Advance Decisions (ADRTs) simply do not work properly at present, because of the way 999 paramedics tend to behave - see the 'Alan & Liz' scenario in my piece at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=767&forumID=45

WHAT CURRENT GUIDANCE FOR 999 PARAMEDICS DOES NOT DO is to tell them 'the family carer has been involved for a long time, and you are new to the situation - ask the family carers what the situation is, provide the family carers with clinical information, then be guided by what the family carers explain to you'.

The same consultant hospital doctor who sent me the piece about 'necessity', also sent this in his e-mail:

'In any setting and for any treatment it is crystal clear that if a patient has decision specific capacity, that clinicians must respect their right to refuse treatment however unwise or eccentric this may seem to be. No ifs, no buts. The law could not be clearer and I would hope most clinicians understand this (I certainly do)'

But, he is a senior doctor, working in a hospital, and he is a person who does things like certifying death.
It isn't at all clear, that more junior clinicians, and 999 paramedics, apply the same 'no ifs, no buts' to patient autonomy.

When I did a survey about 2010, I asked a question which is revealing - the answers from 2 doctors, 4 nurses and 2 paramedics 'just do not line up' (I asked a lot of NHS Trusts, but I only ended up with 8 replies).

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SCENARIO: FATHER AND SON

A father is living at home, with only one family carer, who is his son. This is supposed to be an EoLC situation, so the father is expected to die within at most a year (determined, I assume, by divination). The father has been seeing his GP and is, therefore, 'sort of aware' of treatment options and outcomes.

The father has not refused CPR, and is not considered to be sufficiently 'near death' for his death to be considered 'expected', or for a 'clinical' (i.e. for CPR to be predicted to fail) DNAR order to be in place: so there cannot be a DNAR 'Instruction' in place. The expectations for a CPA could range from 'unlikely' to 'almost sufficiently likely, for the situation to be an 'expected death''. The father is in some sort of discomfort, which he considers to be severe. Either pain, or something else, such as struggling to breathe. This could be either continuous or episodic in nature.

One evening, the father initiates a conversation with 'Son, I'm really struggling here. I really can't put up with this. Would it upset you, if I'm just allowed to die, if you think I have stopped breathing?'. It could end with 'We'll sort this out with the GP tomorrow, but if I die before then, don't phone 999'.

Q1 What 'should' the son do, if he thinks his dad has stopped breathing, before anyone else has been told of the conversation?

Q2 As Q1, but with 'should' replaced with 'would' (in other words, Q1 is asking for your opinion of the 'theoretically and morally correct' behaviour - by contrast, Q2 is asking you for an opinion, as to how you think 'sons' would actually behave in that situation).

COMMENT: this scenario leaves open the question of whether, if the son lets his dad die in peace and then afterwards calls out the GP, the GP would certify the death: but I can see no reason why patients and their relatives should be aware of post-mortem procedures.

Answers to Q1

GP: He should do what his father asked him to do.

Consultant Doctor: Wait and call GP later to certify the death

Paramedic no 1: Preferably make a quick note in care package AND/OR do not call 999.

Paramedic no 2: Respect father's wishes, in the event and contact and discuss with GP ASAP, call 999.

Nurse no 1: If an Advance Decision to Refuse Treatment (ADRT) has not been made and the father has not verbalized his wishes to a professional involved in his care then the son would have to call 999 as his conversation with his father has not been witnessed and not evidenced as "in his best interests"

Nurse no 2: respect his fathers wishes and not phone 999

Nurse no 3: Either ask his father to document his wishes in some form, or if possible contact the out of hours GP, and see if that would be an appropriate course of action

Nurse no 4: He should dial 999 as there is nothing formal that acknowledges his dads wishes. If he does nothing he will be in trouble as it will be classed as neglect also dad may have been having a bad day and if resuscitated may go on to live the rest of his life pain free, with dignity and in control by completing an advanced directive.

Answers to Q2

GP: I think some would and others wouldn't.

Consultant Doctor: As for 1.

Paramedic no 1: Most people will call GP/District Nurse/Macmillan Nurse for advice, and invariably be told to call 999.

Paramedic no 2: Respect his wishes, not call 999 but still contact GP for advice.

Nurse no 1: From my experience most would call 999 because of the moral and ethically duty not to let someone they loved die with an attempt to save their life. The son has to live the rest of their lives with the knowledge that if they didn't act "what if" and can severely affect their grief process unless they felt the action produced more good than harm (their father would be at peace rather than suffering).

Nurse no 2: As above.

Nurse no 3: He will probably ring 999, having recently done some teaching about end of life with the local ambulance service, this is a situation which arises on a regular basis

Nurse no 4: I think the son would dial 999 as he would want his dad to have every chance at life, also he may panic at seeing his dad die. This nurse also wrote the following, after my 'comment': 'You cannot assume that dad dies in peace, also there could be guilt at the "what if" as dad may be successfully resuscitated and have time to put his affairs in order and see family before he dies.'

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The consultant hospital doctor told me (above):

'In any setting and for any treatment it is crystal clear that if a patient has decision specific capacity, that clinicians must respect their right to refuse treatment however unwise or eccentric this may seem to be. No ifs, no buts.'

And that IS how the GP ('He should do what his father asked him to do') and the Consultant Doctor ('Wait and call GP later to certify the death') answered my survey question - but it ISN'T how nurses 1 and 4 answered. It IS how nurse 2 answered. And technically, nurse 3 has given an excellent answer - but, I doubt that the father and son, when the father has just explained in effect 'I'm suffering so much now, that I really would be better off dead', would be 'in the right mindset' to consider the NHS record-keeping process just after the conclusion of that conversation.

The nurses - but not the doctors - are adopting something different: are they TRAINED to 'distrust the family', don't they understand that the law is based on an understanding of the patient's decision (as opposed to a record of the patient's decision), or what ?

I think the paramedics, would prefer to not be involved in such situations.

My poser no 6 in this series, presents a 'DNACPR Justification Hierarchy' and it puts the face-to-face refusal from the patient top, moving down to reach, at no 5 in my hierarchy:

'A DNACPR action, which is based upon information supporting the reasonable belief that something within categories 1 to 4 makes DNACPR the best available behaviour'

The problem posed by 'Father and Son', is that the son's justification for DNACPR is no 1 on the list - the son 'got the refusal from his dad's mouth'. The 999 paramedic, didn't.

So, does 'being told by the son, that his dad had refused CPR' satisfy no 5 in my hierarchy or not ? Why would a 999 Paramedic 'have a reasonable belief that the son was not being truthful ?' - and, if the son is accepted as telling the truth, why would the paramedic then attempt CPR ?

Posers no 9 and 10 in this series 'are somewhat relevant to' this question: in particular, I asked in poser no 10 whether the approach should not be to think about 'what would lead to the best best-interests decision being made'. And disbelieving the word of the person who was most recently with the patient, seems evade 'taking onboard the most up-to-date information'.

Which, while I'm at this, brings me to another point, which needs to be understood.

The MCA does NOT, when I read it, justify the making of best-interests decisions 'in advance'. The only 'decisions made in advance' are the ones the patient has made - the Advance Decisions described in sections 24-26, or a verbally-expressed decision from a patient 'in a situation of ongoing contact'.

What section 4 of the Act implies to me, is that if you are involved with and/or caring for a person who might lose mental capacity, or who has already lost mental capacity (such as a patient with dementia), you must PREPARE by THINKING AHEAD about future decisions WHICH YOU MIGHT BE FACED WITH. You must, to use my phrase, 'learn enough about the situation, so that if something happens in the future, you can incorporate into your decision-making anything new, and then MAKE A GOOD DECISION WHEN FACED WITH THE SITUATION'.

The NHS (and there are obvious reasons for this, which I'll move on to shortly) instead prefers to hold meetings in advance and ALSO to make the decisions in advance. But if I were a welfare attorney, I wouldn't consider that 'what I decided last week is what I must do now' - I would ponder 'does what I provisionally decided would be right last week still seem right, or has something changed'.

Now, this 'pondering' might have to be very rapidly performed, if the situation was 'an emergency' - but, only 'new information' would affect my decision, so I would just potentially be adding a little bit of information, to a lot of things I already knew about.

A welfare attorney, with powers over a decision, SHOULD BE doing that - 'continuously up-dating his/her understanding of the situation, and making decisions IN REAL TIME'.

If you are a patient's daughter, and you are also the patient's attorney, and you are sharing a home with the patient, that is fairly easy to do (not the decision-making part - but the 'keeping up-to-date' part is 'almost a given').

999 paramedics only know what they might read about the situation when they attend - they can NEVER 'have a complete picture'. And what they read, can very easily be out-of-date.

What about, hospital clinicians ?

How could the theoretical 'idealised requirement' of section 4 of the MCA, that a decision-maker should keep up to date in terms of knowledge, and then make decisions as decisions become necessary, work if the patient is in hospital on a ward ? Perhaps the patient's consultant, or registrar, could learn enough to meet that 'idealised requirement', but will those doctors always be with the patient when something happens ? Do ward nurses have the time to become that familiar with the patient as an individual: and even if a particular nurse could, then obviously many nurses (for example, temporary cover nurses) couldn't. As Professor Oliver wrote on the BMJ recently, when speculating on the likely consequences of the 'Tracey' and 'Winspear' court rulings:

'... there will be major pressure especially when patients are moving from A&E or AMU to a ward to say "are they for ressus" doctor?'

So, I think it fair to say that most of the nurses in a hospital, want 'decisions made in advance' as opposed to be faced with making decisions 'in emergencies'.

District Nurses, and GPs, are far too busy to 'understand individual patients as people [and not as 'clinical situations']'. One nurse recently wrote on Nursing Times, commenting to a piece about the number of district nurses available being the key to safe discharge from hospital at weekends:

'Absolutely true - in my little corner of the world (a city with approx 85000 people) we are split into east and west community with 3 community staff nurses and 1 part time HCA. Invariably there is a staff nurse off "sick" at the weekend so we are running around like idiots trying desperately to see many patients ( the last weekend I worked I saw 22 patients, 2 emergencies and 2 patients discharged from hospital. Of the 2 new discharges, 1 had no supplies of any dressings from hospital, relying on the "community" to provide these (we have a small supply of some things but generally not what patients come out of hospital wanting. The other discharge was an independent lady who wanted to administer her own Fragmin however the hospital nurses stated (in her own words) " oh no you cannot do this, district nurses have to do this". This is even though she administers her own insulin !. The whole report is very accurate, however, like the others, probably will not be acted on.'

Even if the time is available, it is horribly difficult to discuss the 'more sensitive but absolutely crucial' parts of end-of-life care. A consultant doctor told me some time ago in an e-mail:

'... the public and press are still often hostile to any mature discussion around planning for end of life care'.

He is right about that - as soon as the NHS tries to get the 'sensitive' decisions from patients, parts of the media kick up a huge fuss. The Mail, so far as I can work out, totally misrepresented something that NHS England was trying to do around CPR, which I wrote about at:

http://www.bmj.com/content/350/bmj.h2157/rr-1

This seems to be par for the course, for the Mail - its earlier coverage of the Liverpool Care Pathway, struck me as much less than 'balanced and restrained'. In my piece 'Clinicians must be more honest about End of Life in all its forms ' I wrote about this, at:

http://www.bmj.com/content/351/bmj.h4846/rr

I commented 'As for The Mail, it raised some valid concerns about the Liverpool Care Pathway - there definitely was some very poor behaviour happening - but in overall terms, The Mail's coverage of end-of-life seems to me to be 'somewhat hysterical' and also 'biased and inaccurate'.'

There is a NASTY and OFFENSIVE 'assumption' within 'systemic behaviour', when end-of-life patients are in their own homes, that 'somehow the professionals are not required to default to trusting the word of family carers' - this does NOT 'promote team-working between everyone who is trying to support the patient'.

The right 'model/approach' is to my mind, definitely the 'Core Care Team' approach which I described in poser no 8 of this series. If doctors and nurses 'must work as a team' in hospitals, then GPs, DNs and family carers need to work 'as a team' when patients are at home - and, because 999 paramedics and A&E clinicians clearly cannot 'be a full part of' that team, they should 'listen to and believe the family carers'.

A 'prevailing attitude' of asymmetric trust (that we laymen must trust the professionals, but they are not required to trust us) really makes me angry, as I've pointed out in my piece at:

http://www.bmj.com/content/352/bmj.i996/rr-6

'My understanding, is that doctors are strongly influenced by 'proportionality' as well as by 'ethics'. Writing as someone whose comatose mother died at home, and whose experiences immediately after the death were decidedly 'bad', there appears to be an absence of balanced ethical principles for end-of-life home death. The fundamental issue, is that although the family carer(s) was present and the professionals usually were not, the professionals do not default to believing what the family tell them.

I was moved to rage, when I heard a doctor stating 'we cannot believe what relatives tell us, because they might be motivated by financial gain'. True enough: and it is similarly true that clinicians might be incompetent, and that police officers might be corrupt. But the majority of family carers, are honest and are doing their best in trying, and often very confusing, circumstances: where is the 'ethical proportionality' in assuming, with no actual evidence, that a relative is behaving nefariously just because a few relatives are bad ?

The 'logic' of applying 'might' in that way to relatives, would lead to almost all police officers being permanently under investigation for possibly having accepted a bribe, simply because most police officers have been in situations when someone might have attempted to bribe them, combined with 'police officers do not usually refuse a pay rise'.'

If it appears that this 'we don't really trust live-with relatives' thing makes me extremely angry - spot on, it does !!!

Hello Mike.
This is such a hard subject to talk about as the problem is that one size does not fit all, I have always felt that it depends on the person, if say for instance the person in question, has always been the sort of person that is not able to take this sort of news, then maybe the family should be the ones to tell, if families feel that the person would be strong enough to be told, then the Doctors should tell the person.
I see myself as a strong person, but I do not know if I would want to be told at all.

Regards.

Irene.

Hi Irene,

I think a lot of us don't want to be told bad news - I'm not exempting myself from that.

But there is a huge 'muddle' within end-of-life behaviour, where 'talking in euphemisms' can lead to confusion and worse, where 'patient confidentiality' is sometimes getting in the way of patient autonomy, etc.

I wrote in poser no 11 that:

'If you are a patient's daughter, and you are also the patient's attorney, and you are sharing a home with the patient, that is fairly easy to do (not the decision-making part - but the 'keeping up-to-date' part is 'almost a given').'

The 'decision-making part' is so difficult, especially for life-and-death decisions, that if I were a welfare attorney, I would be 'desperate to get the decision from the patient, so that I could avoid making a decision' - I wrote about that in my piece at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=814&forumID=45

Where I wrote:

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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.

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In fact, 'being the welfare attorney of your loved one' is probably so 'horrible a situation', that there is perhaps only one reason why anybody would accept the job: because, the only thing worse than having to make the decision yourself, is being unable to prevent other people, such as doctors and nurses, from making decisions about your loved-one, which you feel certain your loved-one would not have wanted.

And, it isn't helped - it is positively hindered - by 'people living within different realities':

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=851&forumID=45

It is all very complicated - but everyone needs to be thrashing these things out, not just 'the professionals'.