Emergency Care and Treatment Plan PUBLIC CONSULTATION NOW OPEN

Not a great start !

I just checked the link above, and having just spent about an hour 'screengrabbing' the online consultation as JPGs, since then the page has been updated and now has a PDF with the survey which you can download.

That wasn't there a couple of hours ago - and I've got the screenshot to prove it !

I am exasperated by the combination of my library internet service and the ECTP consultation.

The consultation is very lengthy, can ONLY be completed via the online form, and has to be done in one go (you cannot save a partially-completed response at the RC(UK) end) - my library has an internet service which 'freezes' every few minutes. That seizes up the online form, and the only way to unfreeze it is to click on 'reload the page' which destroys all of the entries you have already made.

Even trying to cut in pre-prepared answers from Word, it is impossible to complete the form from Coventry's city libraries.

I've just assembled a Word file of what I wanted to send to the ECTP consultation, which I will be sending as an e-mail to various people - although I have no great expectation of anybody at the ECTP consultation reading it.

However, and despite the Word document using colour to make clear which are the consultation questions, and which bits are my answers (so that will be less obvious here), I'm so 'vexed' by this state of affairs, that I'm going to copy my Word file here (I will not attempt to 'reformat' any errors which the pasting in creates - too long).

XXXXXXXXXXXXXXXXXXXX

https://www.research.net/r/ECTPConsultation

My Responses to the ECTP Consultation

Please note: I have spent over an hour, on different days and on different computers, unsuccessfully trying to complete the online consultation form (about 10 attempts). The problem is that I use my local council libraries for online, and its internet connection 'freezes up' every few minutes - that seizes the online survey, which can only be moved onwards by 'reloading' the webpage, and doing that destroys all of the previously entered answers. Even with pre-prepared answers, cutting and pasting from a Word document into the online survey, is still too slow for successful completion of the online survey.

1.Are you completing this consultation as

A member of the public/patient

13. Do you think a new system of Emergency Care Treatment Plans (ECTPs) is a good idea?

I disagree that it is a
good idea

15. Please insert your comments on this section and your suggestions for improvement below.

My basic comment, hinges on the question 'WHY is this information [in box 3] present ?'.

You have made it clear that this ECTP is to be used 'in emergencies', so I am compelled to present the following analysis (which I consider to be entirely legally correct for the law in England):

1) The people already deeply-involved with the patient in an ongoing way, should already understand anything which is written in box 3 - put simply, 'the involved and informed people, are the ones who are COMPLETING this ECTP'.

So, the ECTP is for UNINFORMED people - such as 999 paramedics.

WHY are 999 paramedics, being told 'the reasons for the chosen plan' ?

In 'an emergency', there is no time to consider the VALIDITY of 'the chosen plan' - if you were not involved in its creation.

People such as 999 paramedics cannot in my opinion 'claim to have complied with section 4(9) of the MCA' simply by READING A (or a few) DOCUMENTS: this equates (technically) to '999 paramedics cannot make 'best-interests decisions'.

So, the ECTP should be designed to persuade people such as 999 paramedics, to follow the decisions of other, previously-involved and better-informed people.

It logically follows, that the ECTP should not be explaining 'the reasons for the chosen [described is a better word] plan' BUT INSTEAD should be explaining 'why the people asking us to follow their plan, are more qualified to make the decision than we are'.

In other words, the ECTP should describe the plan, and it should provide the proof that the plan was arrived at in compliance with the law and logic: that ISN'T what this form is doing.

This ECTP is - at one level - apparently providing readers with a justification for 'making decisions' when it should mainly be about explaining decisions already made, and providing some information about the patient (ability to communicate, etc).

You CANNOT logically argue/imply that it is possible to allow a previously uninvolved clinician, to 'defensibly make a section-4 MCA best-interests decision' simply by reading something like an ECTP in a pressured situation.

16. If you have comments about the instructions on how to make a choice about priorities and to fill in the boxes marked 4 please record them briefly here and make any suggestions for how they could be improved.

I have two problems with this.

I have a serious problem with 'shared decision making' as a term:

http://www.bmj.com/content/349/bmj.g4855/rr/761712

And while I am happy with the situations described in the three boxes labelled '4', and am not happy that 'the senior clinician/other available clinician' is the person who is signing the box.

You have already written, earlier:

'The decisions recorded on the ECTP can be reviewed and changed at any time, particularly when a person's condition changes or if the individual changes their mind. The ECTP will normally be stored in the individual's clinical records while they are in hospital or kept by the individual themselves when at home.'

If a mentally-capable patient is at home, and wishes to 'change his mind' about one of HIS DECISIONS which is recorded on the ECTP, and if the ECTP 'is kept by the individual at home', THEN WHY CAN'T THE PATIENT SIMPLY ALTER THE ECTP ?

(17) Please write your comments about box 5 and your suggestions for improvement below.

The information recorded in box 5 seems okay to me - but I'm not so happy with the accompanying guidance note, which includes:

'It gives the opportunity to be clear about how much of which types of care and treatment the individual and their doctor have decided would be wanted if needed'

That isn't a correct description of 'consent law during mental capacity' - it goes 'doctor offers a treatment, then the patient decides whether or not to accept'.

It isn't a correct description if a suitably empowered welfare attorney or court deputy is involved and the patient is not mentally capable, when it would be 'the attorney/deputy has consulted with the doctor and others, and the attorney/deputy has decided that it is in the patient's best-interests if ...'.

And it definitely doesn't cover the situation of a mentally-incapable patient, no Advance Decision, and no attorney or deputy with decision-making authority..

(18)Please insert your comments on boxes 6 and your suggestions for improvement below.

You should be ashamed of yourselves, for publishing both this ECTP draft and also the BMA/RCN/RC(UK) Joint Guidance on CPR decision-making.

I have rather acerbically commented on 'box 6' in my piece at:

http://www.bmj.com/content/352/bmj.i26/rr-5

Box 6 should be signed by whomever 'possesses the legal authority over the CPR decision' and that can be the patient, a welfare attorney or the rather more complex situation of incapacity without an ADRT or a suitably-empowered welfare attorney.

Medics should certainly be signing to confirm that a recorded medical opinion (such as a prognosis - for example 'CPR could no longer be clinically successful in my opinion') but not for decisions which are not within their power to make.

But I DO APPROVE of:

'In the box 'not for attempted CPR' there is also a place to record where an ambulance crew should take the individual if they die during an ambulance journey.'

ALTHOUGH this risks confusing 'CPR should not be attempted' with 'the death would be certified': there is rampant confusion around 'expected death' and it definitely needs to be addressed properly:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=785&forumID=45

(19)Please insert your comments on box 7 and your suggestions for improvement below

Box 7 is okay

(20)Please insert your comments on box 8 and your suggestions for improvement below

I am not at all happy with 1 - it should just say:

1 have been made by the individual (the patient)

I am also not happy with a clinician signing 'to confirm that decisions have been made in compliance with the law' (no 2).

People should sign in respect of their own actions - so a clinician should confirm that 'I consider that my own decisions were made in compliance with the law', but, for example, it is NOT THE PLACE of a clinician to opine on whether a welfare attorney has complied with the law: it is up to the attorney, to defend his/her own compliance with the law.

I also believe it is necessary for 'details of discussions' - wherever they are recorded - to be 'signed-off by all sides of the discussion'. As I quite forcibly pointed out in my piece at:

http://www.bmj.com/content/352/bmj.i26/rr-5

I find it doubtful that 'full details' of a discussion can ever be recorded, but I note that section 8 mentions discussions and conversations - it makes sense for me to move on to box 9.

(21)Please insert your comments on box 9 and your suggestions for improvement below

You (almost all clinicians) are writing things, which I cannot find in the MCA.

This 'shared decision making' is an unclear term to begin with, but it simply isn't 'in the MCA' anyway. It is very clear that the MCA:

Requires a best-interests decision-maker to satisfy section 4(9);

Requires all non-court best-interests decision-makers to satisfy the same basic rule - of compliance with section 4 of the MCA;

Requires BI decision-makers to be guided by sections 4(6) and 4(7);

Places suitably-empowered welfare attorneys or court deputies in the position of being the 'determinative' (my word) decision-maker (sections 6(6) and 6(7) of the MCA).

So this sentence in the notes is not correct, in terms of 'who does what':

'There are some situations where there may been no shared decision-making with the individual or their representative.'

Attorneys and deputies who are empowered to make the section-4 decision, are 'the person who does the consulting required by section 4(7)'. Attorneys and deputies would be obtaining necessary information from clinicians and various other people, and then reaching a decision - that isn't 'shared decision-making':

http://www.bmj.com/content/349/bmj.g4855/rr/761712

You persistently 'imply' that somehow clinicians are part of the 'decision-making' beyond 'being consulted by empowered attorneys or deputies' - THIS IS NOT LEGALLY CORRECT.

In box 8, the implication is that the clinician can sign the ECTP 'to confirm that an attorney's decision was 'correct'' - EVEN IF the attorney is the person with legal authority to MAKE the decision.

I find this TOTALLY UNACCEPTABLE:

If as a patient I 'appoint' a welfare attorney to make those decisions, I don't expect clinicians to dispute them [beyond the mechanism of 6(7)];

If I were a welfare attorney, I would be incredibly annoyed if I had been given the power by a court to make those decisions, if I discovered that clinicians were trying to thwart my decision-making powers.

BUT - if [and I do NOT accept this claim] I were to accept that in the absence of an attorney or deputy, 'the senior clinician possesses decision-making authority', then I must enquire why family and friends are not required to 'confirm the decisions made by the clinician' ?

I have presented an analysis of MCA decision-making, in the PDF which can be downloaded from:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=741&forumID=45

I posted my analysis in August 2014, and since then I have seen several court cases which appear to confirm that my analysis is legally correct.

The MCA is clear about the decision-making authority of attorneys and deputies, but it becomes very complex if there isn't either [with decision-making power]. That doesn't make an analysis of 'how to follow the MCA' impossible - but it does make it incredibly difficult to shoehorn the MCA into 'neat process-based behaviour' as is typically 'liked' by 'the NHS'.

(22)Please insert your comments on box 10 and your suggestions for improvement below

Again, it is the nature of the signatory - 'the senior clinician' - which I object to: there are other people who should be signing this type of document, apart from clinicians (senior or otherwise).

http://www.bmj.com/content/352/bmj.i26/rr-5

23. Please insert your comments on box 11 and your suggestions for improvement below.

I probably cannot suggest better wording, because of 'the weird way that clinicians seem to write their own guidance'.

The logic of 'making a decision' is blindingly obvious: the decision-making is required when the action is a possibility. So a decision about 'should CPR be attempted' is pointless outside of a CPA, and as a CPA is a specific event, it is for each specific CPA that CPR must be considered.

I'm saying - and not very well - that box 11 is stating the blindingly obvious: and it worries me, that the blindingly obvious needs to be stated quite so frequently !

24. Please make suggestions for people who should be added to or removed from the list of contacts in an emergency situation and briefly explain why.

I usually write about EoL when the patient is at home.

District Nurses should be somewhere on that list - it isn't obvious to me if DNs fall in 'specialist worker/key worker'.

You MUST HAVE space for SEVERAL welfare attorneys. It is possible to appoint several attorneys [and irrespective of if the attorneys possess joint or joint&several powers] there is 'no ranking' between attorneys.

And if there are several attorneys appointed with joint & several powers, then ANY ONE of the attorneys can make and express a legally-authoritative best-interests decision: so, 'in an emergency', you must try to contact them all directly, because even if you only succeed in contacting a single attorney, that attorney 'is the legally-empowered decision-maker'.

I would like space for more than one 'family/friend' on this form as well:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=804&forumID=45

25. Having worked through the ECTP, what things do you like about the approach?

Very little, to be honest. Box 9 is good except for its use of the term 'shared decision making' to describe the type of interactions described in section 4 of the MCA. And Box 11 does at least point at 'decisions must be considered at the time of the possible intervention', although I'm not entirely happy with the wording.

26. What do you dislike about the approach?

It is still 'clinician-centred' whereas the law around consent from mentally-capable patients (even if projected forwards into anticipated future incapacity) is based on 'Informed Consent' - clinicians provide clinical information, then the patient considers and expresses the decision. The law during mental incapacity is much more complex to describe briefly, but it doesn't amount to 'the clinicians have decision-making authority' - it amounts to 'anyone who makes a decision, must be able to reasonably claim to have made the decision in compliance with the MCA'.

It also under-emphasises the legal position of both Advance Decisions, and of welfare attorneys and court deputies.

27. Do you have any other suggested improvements you haven't already mentioned earlier?

It is very difficult for me to suggest how to 'improve' this document [beyond things such as 'there must be space for several welfare attorneys] because it isn't what I would have created.

I would have created something which stressed what patients had decided, and where the patient had not decided, which individuals (clinicians and family or friends) 'were in ongoing contact with the patient, and should be assumed to understand the overall situation'. Bluntly - and as I've said, I concentrate on patients who are at home during EoL - I would have written something which tells people such as 999 paramedics and A&E clinicians to 'listen to what the people living with the patient are telling you - accept what spouses, children, etc, are saying, because they are much more involved with the patient, and understand what the patient would want to happen, much better than you do'.

Because there is something I call 'the Core Care Team' which I would like to be adopted as the basis for EoL behaviour - a file describing the CCT can be downloaded from my 'poser no 8' in the series at:

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

I introduced the 'rationale' for my CCT approach, with a text piece, and it was the following:

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.

28. Overall how satisfied are you with the ECTP document?

Dissatisfied

29. Please make any suggestions for improvements below in the relevant box.

6As I've pointed out before, a patient might not be simply for or not for CPR - the patient might tell his doctor a more complex decision.

Also, this box is I feel confusing 'do not attempt CPR' with 'the death would be 'expected'.

That IS NOT LOGICALLY TRUE - a patient is legally entitled to forbid CPR even for a death which at the time could not be certified, and in principle a doctor might agree to a patient's request that CPR the medic believed could not work, should be attempted at the patient's request (put simply, the section adds nothing to the current mess around post-mortem behaviour).

STARTING AT QUESTION 31

33. Introduction

'The leaflet may not answer all your questions, so please talk to a member of the healthcare team looking after you if there is anything you don't understand, or if you would like more information.'

I'm wondering what a member of the healthcare team would say to me (the patient) if I asked 'How come I'm not signing this ECTP, to confirm that what it contains, is an accurate record of my decisions and wishes ?'

36. Who makes the decisions and completes an ECTP?

This is a tangled mess. You have already pointed out that the ECTP is for use during a situation when the patient cannot make and express his/her decisions at the time, so the ECTP is completed 'in advance'. You state in 'Who makes the decisions and completes an ECTP?' that 'The health professionals who are looking after you must give you all the information that you require about your state of health and about treatments that you may need, so that you and they can make the right decisions together.' which is NOT true: the patient expresses a decision (consent or refusal) at the end of 'informed consent'. This ECTP does not seek to record the patients DECISIONS - it seeks to record the vaguer 'wishes'.

'Decisions made by the patient and then followed by everyone else = 'simple''

'Applying 'wishes' during an 'emergency' = 'complex and horribly challenging'.

TRY TO GET AND RECORD - and then FOLLOW - DECISIONS FROM THE PATIENT !

It also should not say 'treatments which you may need' because 'may need' is the wrong way of phrasing this, in legal terms - it should be 'treatments which might be of clinical benefit to you in the future'.

The section moves on to this, very interesting wording:

'If, after careful assessment, your healthcare team finds that you don't have the mental capacity to make the decisions that are needed for an ECTP, they must make decisions that are in your best interests. To do this they must talk to your family or other people who are able to speak for you in order to decide on the choices that you would have made, if you had been able to.'

IT IS 'LOVELY WORDING' and it is what I would love to be able to write - sadly, it is not legally correct if you put [as you have done] that word 'MUST' in there.

All you can write (and you must sort out your position on 'patient confidentiality to get this to work ! - see later) is what I wrote on BMJ a couple of years ago (I was thinking about CPR at the time - hence my failure to say 'welfare attorney or court deputy), in my piece at:

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

The trickiest issue with EoL behaviour is the legal aspect, and in practice this means the interpretation of the Mental Capacity Act. Clinicians do not usually agree with me about this, and most believe that 'best interests decisions ultimately devolve to the senior clinician' - but the Act does not state that. If there is a suitably-empowered attorney, who almost certainly will be a layman, the attorney is 'the ranking section 4 decision maker' because of section 6(6) of the Act. So, it is clear that 'making a best interests decision' does not require that one is a trained clinician: this is because the section 4 best interests test can logically only start from the concept of 'if we could somehow ask the patient, what would he decide ?' (see section 4(6) of the Act). As an aside, it is often clearer, to think in terms of 'interventions being accepted or refused' rather than of 'treatments being accepted or refused'.

If there is not an attorney - and it is unusual for there to be an attorney - the Act does not define who can be a decision maker, it merely requires anyone who makes a best interests decision, to be able to have legitimately made it (section 4(9)). So, instead of assuming 'the doctor is the decision maker', let us simply assume 'there is a decision to be made' and look at the mechanism. The mechanism should be, that the clinicians describe the clinical outcomes with and without any offered treatments to 'everyone who could validly have an opinion (the family and friends) about what the patient would say, if the
patient could answer for himself': then, all of the 'family and friends' individually answer. The question put to family and friends is 'What would the patient want to happen' - it is not 'What do you want to happen'. If they all say 'Fred would accept the treatment', or they all say 'Fred would refuse the treatment', it seems simple - in such a unanimous situation, behave as if the (incapable) patient has answered directly, record who was involved in the discussions and who said what, record the best interests decision
which emerged, but do not claim who 'made the decision'.

It isn't difficult to analyse the situation of 'so what happens if they don't all come up with the same answer' - see the file you can download from the link below - but the answer doesn't fit easily with 'hierarchy and process':

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=741&forumID=45

39. What types of care and treatment will be considered and recorded?

I'm fitting this in here, because it is as good a place as any.

I keep coming across the phrase 'It cannot be used to request or demand treatments that would not be beneficial to you.'

I have noticed, that medics seem to prefer 'ethics' to law, while I like to start from law and to then apply 'logic and ethics'.

I also like to discuss CPR - it is, in fact, 'simpler to consider'.

It is PERFECTLY POSSIBLE to construct a situation, in which CPR should only be attempted if it were 100% certain to be unsuccessful: the law and the 'ethics' are very clear.

You will find such a scenario at:

http://www.bmj.com/content/352/bmj.i26/rr-9

Hint: the EoL husband, has very powerful reasons (his wife's former husband's death) to refuse any attempted CPR if he might end up comatose - he also has a daughter with learning difficulties, who might find him in CPA (and who would therefore be very distressed indeed, 'if 999 paramedics did not attempt CPR).

I am stopping at this point, and jumping forwards to the 'contact details' section at the end of the consultation.

This ECTP is simply 'flawed as a concept': it seems to be an attempt to introduce 'ethics' when it is local law which must be followed, it wants only clinicians to sign when the legal authority often resides elsewhere, and it appears to be promoting 'advance statements' when I think we should we all be promoting Advance Decisions:

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

112. Contact information for notification of feedback

Name Mike Stone

Email Address [log in to view email address]

I've just received an e-mail, presumably sent to everyone who responded to the consultation, which tells me 'where things stand' on this ECTP - it is:

Dear ECTP responder,

Thank you for responding to the public consultation on the Emergency Care and Treatment Plan (ECTP) prototype and supporting information documents which closed on 29 February 2016. Over 1000 responses were received of which 10% were from lay people, 80% from healthcare professionals and the remaining 10% from patient and social care organisations and professional organisations.

Over 91% of respondents agreed that the ECTP is a good idea. A total of fourteen interviews with members of the public, paramedics, senior nurses (nursing home, community matron and palliative care), paediatricians, physicians (acute and palliative care), general practitioners and surgeons were also conducted. The aim of the interviews was to assess how well the ECTP document could be used in a variety of settings to record patients' preferences and clinical decisions following discussion or, in the case of paramedics, guide their practice in an emergency situation. A range of, and in some instances, very differing views were expressed in response to the survey questions. This feedback, on the ECTP and supporting information documents has been reviewed and collated into the main themes listed below and these are being considered by the Working Group:

A wish for clearer messaging and communication on the ECTP itself and in the supporting documents (e.g. the purpose of the ECTP, clarity for sections recording patients' preferences and those recording clinical decisions, how it interfaces with other systems, use for children)

The legal status of the ECTP and the decisions recorded on it, and other legal aspects such as compliance with mental capacity legislation

Design of the plan (e.g. colour, layout, style)

Education materials and resources for healthcare professionals.

The Helix Centre (a joint initiative between the Royal College of Art and Imperial College London) specialises in the design of documents to maximise their effectiveness when used to address complex healthcare issues and has volunteered its expertise, time and resources to refine and develop the ECTP to try to ensure that it meets the needs of both patients and healthcare professionals. Work is already underway on this and the amended material will be presented to the Working Group when it meets again at the end of May. Two patient focus groups have been arranged to review the revised material and to provide feedback and advice to the Working Group. We shall provide further information on the website after the May meeting.

On behalf of the ECTP Working Group thank you once again for your feedback.

ECTP Working Group

I've just been looking for something on the RC(UK) website, and I stumbled across the page at:

https://www.resus.org.uk/consultations/respect/

It seems - the page tells us - that:

'Following the public consultation and interviews to assess how the potential use of the Emergency Care and Treatment Plan (ECTP) in a variety of settings the Working Group has made a number of changes to the layout and wording of the document to address the issues highlighted.

The title of the document has been changed from ECTP to ReSPECT (Recommended Summary Plan for Emergency Care and Treatment). The main reasons for this are (1) to make it clear to all that this is recording recommended care and treatment for a future emergency (the final clinical decisions rest with the professionals dealing with any emergency) and that (2) it is a summary and not a substitute for more detailed plans.'

The page goes on, to say a few other things. I have a possible issue with the meaning of 'clinical decisions' in the wording above - I've a long-standing issue around the phrase 'a clinical decision'.

FAO Mike Stone
I attempted to read all your comment I was exasperated at the length of it ! who has a job that gives them enough time to read and reply appropriately ?? I certainly do not . I have a job that's keeps me non stop busy .As it should do this was a waste of their time and probably money as the people who are there at the moment work far too hard to be able to have the time to have a say !

Kirsty,

If you mean my comment at 01/02/16 - 14:12 then I was exasperated when I posted it: it isn't sensible to read it, as a DIC reader.

I had wasted a couple of hours trying to complete the ECTP consultation's online comments form, failing every time because the internet connection in my local library would 'seize up' every few minutes, which was making it impossible to actually send my comments to the consultation. Eventually I managed to send a submission in using the online consultation form, but even so I don't think a consultation of that length should require people to complete it all in one go (you couldn't save a partially-completed submission, and return to it later, as is sometimes possible with these forms).

I wouldn't recommend that anyone should read the 01/02/16 - 14:12 part of this thread - it was put there, because if I had failed to grapple the online form into submission, I was going to send a vexed 'I wanted to send the comments posted at ... to you, but it turned out to be impossible' comment to someone at the RC(UK).

Length and exasperation do go together: I tend to 'be exasperated' by various pieces of GMC/BMA guidance about the Mental Capacity Act and Cardiopulmonary Resuscitation, which use far too many words to describe the simple bits, and far too few words trying to be clear enough about the complicated bits.

I am not occupied by a job, as Kirsty is, and I've got a pre-booked session on a library computer, and some time to fill - so I'll add to my earlier response to Kirsty.

1) You are 100% correct - I've got time to fill, which isn't true for most people, and I've also got few interests to fill it with, and in general very low levels of 'motivation' [which could be at least partly the result of a couple of years when I was definitely depressed - I am unsure whether my very low levels of both motivation and enjoyment are strongly linked to my period of depression, or not];

2) I am, however, motivated to improve certain things about end-of-life - notably, behaviour when terminally-diagnosed patients are in their own homes, and there are lay carers who are living with the patient: the issue involves the 'role of' those lay people, and the 'integration' between the family carers and people such as 999 paramedics;

3) I write, therefore, about 2) a lot - my writings on the subject, are not all that hard to find [and many are here on DIC];

4) The concise version of my position on what was originally ECTP, and now has morphed into ReSPECT (which doesn't seem as clear a label as ECTP was, and if anything is now, it appears, more legally correct while therefore being a very vaguely-defined concept), can be found in my piece at:

http://www.bmj.com/content/352/bmj.i26/rr-5

5) I apologise for inflicting my post at 01/02/16 - 14:12 on Kirsty (or on anyone else), but I think I did explain that 'I was very frustrated with the consultation' at the time, etc.

i feel that this needs to be carefully looked at as there could be times when a decision is made without having the full facts of the case and can leave it open for review. Making large sweeping statements in regards to something like this can have a serious knock on effect with people left behind

A major part of the 'premise' of these documents, whatever they end up being called, hinges on this term 'a clinical decision'.

Clinical decisions, are things which require clinical expertise: but these ECTPs are in large part not about 'how an intervention is performed' but are instead about 'should an intervention take place ?'. This 'should an intervention take place' question, isn't 'a clinical decision' at all - it is a much more complex decision than 'clinical decisions' and, specifically, the clinical intervention which would lead to the best clinical outcome is NOT determinative of the decision.

Or, it SHOULDN'T BE determinative (the clinical outcomes, are simply factors to be incorporated within decision-making).

Professor David Oliver has written an article at:

http://www.bmj.com/content/353/bmj.i3103

In his article, David Oliver writes:

'Here are some things, that in my experience we still do far too often: ... Pass referrals to intermediate care services in the community in ways too often designed around what providers want rather than what patients really need'

I take that to mean, that what the patient ends up with, is what is 'easiest for the service' as opposed to 'what the patient needs'.

Varying that a little, these ECTPs are supposed to be used in 'emergencies', and by people 'who were not previously deeply involved with the patient' - by people such as 999 paramedics. What is 'easiest for the paramedic', is typically 'to intervene', and probably to also take the patient to hospital 'where the patient becomes somebody else's concern'.

There will never be, any sort of 'ECTP-type documentation' which would allow a paramedic to properly understand the patient as an individual - so we should not be 'strongly pushing ECTP' and instead we should be strongly promoting Advance Decisions:

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

There is also an argument, about who should be making the decision - I've just explained this point, during discussions about an online Mental Capacity Act e-learning tool, and the argument goes like this ('the system' does not like this argument - but, logically, it seems right to me):

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

The second thing which cropped up, is an almost-never-discussed, but 'logically fundamental' issue. It was my comment to a section on 'emergency situations'.

The tool uses a sentence when describing best-interests decision-making:

'Think of this like a jigsaw - as if you are putting together pieces of information'. A quick and slight digression
- there is 'muddle' about things such as ECTP, here: an ECTP is either 'information to be considered' or 'a decision explained by someone who understands the situation better than the reader', and typically current 'ECTPs' fall somewhere between the two (you need many more signatures, than are currently present, for the latter type of document).

There is a very deep issue here, about who is best-placed to make decisions: if a family carer calls 999 to get some information about the medical condition of a collapsed patient, and the patient was already terminally diagnosed, the family carer will already know about most of the 'jigsaw' you mentioned above - the only 'new piece' is why the patient collapsed, and likely prognoses. The 999 paramedic can shed some light on those final two pieces - but the paramedic knows absolutely nothing, about the 'numerous other jigsaw pieces which section-4 requires a
decision-maker to piece together'.

Surely in this situation, [logically] the paramedic should supply the missing clinical pieces, and let the family carer be the best-interests decision-maker ?

There is also a case to be argued, that the family carer is bound by the Act when the patient collapses, but the 999 paramedic is not - this has to be 'rationally correct' (the
argument being that the Act requires an ongoing carer to 'think ahead', and that unless you have thought ahead, you could not consider enough of section 4 'in an emergency' - but the 999 paramedic cannot 'have thought ahead' because he/she was not previously involved).