An issue with ReSPECT which I will be pointing out to the Public Guardian

Hi Mike

A very comprehensive analysis of the issues, thank you for continuing to take the time to address these issues. I too have some concerns about the potential power transfer in the ReSPECT process. It was difficult enough when we had hospitals putting DNARs in place without reference to anyone, but tis seems to move the whole thing to another level. Keep up the great work.

Hi Liz, I asked in my e-mail for confirmation of receipt from the OPG/Alan Eccles. So far, not even confirmation of receipt, let alone any comment on the issue I'm trying to raise.

You are right, I think, about 'It was difficult enough when we had hospitals putting DNARs in place without reference to anyone, but this seems to move the whole thing to another level'.

ReSPECT 'has an attitude' which seems to be 'in denial' about the transfer of decision-making away from clinicians, towards the patient and other involved lay persons.

The Office of the Public Guardian has now replied to an e-mail I sent yesterday, asking if I would get confirmation of my original e-mail. The OPG seems to think that clinicians writing guidance which is clearly 'in contradiction of' the Mental Capacity Act is not its concern - the OPG has pointed me at the Department of Health. This 'passing the buck' can go on forever, in my own experience.

The e-mail from the OPG:

Dear Mr Stone

Thank you for your email below.

I am sorry for the delay in response. We have referred your concern to our Policy team and they have advised that this is not a matter for the Public Guardian to deal with. It may be advisable to take the matter up with the Department of Health who are better placed to deal with issues concerning treatment decision at end of life.

I hope this information is helpful.

Kind Regards

Further explanatory e-mail from the OPG (this didn't come as a surprise to me - it was a contact who suggested that I try the OPG re my issues with ReSPECT, and I never had any expectation of success anyway):

The Public Guardian does not have authority over how organisations carry out their duties and whether these are compliant with the Mental Capacity Act (MCA). The Public Guardian is not a 'custodian' of the MCA; he cannot become involved in how an organisation carries out its duties and whether these are in line with the MCA, or any other legislation.

The Public Guardian has jurisdiction over attorneys and deputies who act on behalf of people who lack mental capacity. If concerns are raised about an individual who is acting as an attorney or a deputy then the Public Guardian can investigate those concerns.

I hope this information clarifies the OPGs role.

Kind Regards

I have sent my issue/concern/complaint re ReSPECT to the Department of Health, and an e-mail to me has confirmed receipt - if and when the DH gets back to me with a proper response, I will update here:

Message body
Thank you for contacting the Department of Health. Please note that queries are only monitored between 9am and 5pm Monday to Friday. This is an acknowledgement - please do not reply to this email.
If you require medical treatment please dial 111, visit NHS Choices, or contact your GP surgery. For emergencies please dial 999. The Department cannot provide clinical advice.
Where a reply is appropriate, we aim to respond within 18 working days, or 20 working days if your query is a Freedom of Information request or complaint.

If you have contacted the Department of Health about a current health or social care campaign, please visit the Gov.uk where a response may have been published. You may also find it helpful to refer to the Department of Health's what we do section.

Please note that the Department of Health does not handle complaints about the NHS or social services. If you wish to make a complaint about a healthcare professional, an NHS organisation or a social care provider, please visit the complaints procedure page on Gov.uk.

You can find out more about the Department’s commitments from our Personal Information Charter.
A copy of your query can be found below:
Message:

Dear Sir or Madam,

I raised an issue with the OPG/Alan Eccles, and I was pointed at the DH.

I attach the PDF which explains my issue, as sent to the OPG and Alan Eccles.

I also attach a PDF copy of an e-mail [which contains the e-mail from the OPG pointing me at the DH] which I sent to Jackie Doyle-Price on 26th September.

Will the appropriate person at the DH please read both of the PDFs, and then get back to me with a response about my concern(s), and please respond to me by e-mail and not by phone,

Regards, Mike Stone

About a week or so ago, I sent a question to the Care Quality Commission: it amounted to 'does the CQC consider that ReSPECT is legally correct in terms of 'consent' as described in English Law'.

I have also just received a reply from the Department of Health [and nobody has ever suggested that ReSPECT is a DH publication, so far as I'm aware]:

Dear Mr Stone,

Thank you for your further correspondence of 5 October to Jackie Doyle-Price about the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT). I have been asked to reply.

I should point out that, notwithstanding the advice you were given by the Office of the Public Guardian, ReSPECT is not a Department of Health publication.

Your concerns would be best dealt with by NHS England at [log in to view email address].

I am sorry I cannot be more helpful.

Yours sincerely,

DH Reply to me ends.

I did copy-in the NHS England end-of-life lead, Bee Wee, when I asked the DH my questions - I started by pointing that out.

I also asked the DH a DIFFERENT QUESTION - which it has not, I think, clearly answered - my e-mail to the DH (well - one of them):

Dear Ms Doyle-Price,

I used an online contact form this morning to request a DH e-mail address which I could use to raise a concern I have, but I have just ‘found you’ in connection with ‘Choice in end of life care: government progress’. It seems to me, that you are probably a suitable person at the DH to raise my concern with.

I was pointed at the DH by the Office of the Public Guardian: in case the DH points me at NHS England or back at ‘ReSPECT’ I have copied in Bee Wee and Juliet Spiller.

BACKGROUND to my e-mail to the OPG:

I happened to mention that I had some objections to something called ‘ReSPECT’ to one of my contacts, and my contact e-mailed to me a similar issue, expressed more succinctly:

I can’t see in the ReSPECT form/guidance any difference between the status of a Health & Welfare Attorney (appointed under the LPA) and any other relative or indeed passing stranger - which seems wrong to me.

When I put this to the same contact:

Who - which 'organisation or body' - is able to issue 'we believe' or 'we consider' statements, about the interaction of the MCA and written NHS records?

Who could issue a statement of:

'We consider that if an NHS document contains an anticipatory best-interests decision, and that decision was made and expressed by a suitably-empowered Health & Welfare Attorney or Court Deputy, the record should be signed by the attorney or deputy'.

The NHS likes ACP - and it does record anticipatory BI decisions (it is not clear that BI decisions should be made in advance, but that is more complex), but it always has the senior clinician doing the signing. Just for once, the MCA is blindingly clear about decision-making authority in that situation: so it should be the attorney or deputy whose authority encompasses the decision, who should be signing a record of it unless you apply some really weird logic!

So I would like to make a start, by getting those attorney/deputy signatures to replace clinical signatures, where logically appropriate: then 'I can work outwards from there'.

So, who could issue such a statement with some clout - DH, CQC, NHS England, HEE or who?

You will have guessed the follow-up question - 'and how do I get them to do it?'.

The reply I received was:

I truly don’t know the answers to your questions.

DETAILS of my concern:

I have attached the PDF which I sent to the OPG, and it [I hope] makes my concern/complaint very clear indeed, so I need not repeat the details in this e-mail, which you should regard as ‘a cover note for’ the PDF. Can the DH please supply me with an answer to that question I have posed above (Who could issue a statement of: 'We consider that if an NHS document contains an anticipatory best-interests decision, and that decision was made and expressed by a suitably-empowered Health & Welfare Attorney or Court Deputy, the record should be signed by the attorney or deputy'.). Note that I am asking 'who could' - I am not asking if anyone will, because the 'will they' depends on whether or not my analysis [as present in the PDF] is accepted,

Yours sincerely, Mike Stone

Having been pointed at NHS England by the Department of Health, I received this reply from NHS England yesterday:

Dear Mr Stone

Thank you for contacting NHS England. Please accept my apologies for the delay in responding.

On this occasion the Customer Contact Centre is unable to assist with your enquiry and provide you with a specific response as I have been unable to locate any documents published by NHS England that refer to the question that you have asked in your below email.

I am however attached a guidance that has been published by the British Medical Association (BMA), The Resuscitation Council and The Royal College of Nursing. If you need further assistance I would suggest contacting The Resuscitation Council https://www.resus.org.uk/contact-us/general-enquiries/ directly.

Regards

[name redacted]

I am pleased to report some limited progress - a small step in the right direction. ReSPECT has recently altered its FAQs about the role of 'legal proxies' (in England and Wales, [Health and] Welfare Attorneys or Court Deputies). The original FAQs were very misleading, the new FAQs are much better - however, the ReSPECT Form is still only signed by clinicians, which I consider to be deeplyunsatisfactory (you will find the old and new FAQs in the attached PDF, along with an explanation of why I find the change only a small step towards 'correct and balanced behaviour': in essence, while the FAQs are much better, there are 'mindset implications' which follow from having only the signature of the senior clinician on the form - it gives the impression that 'somehow decisions which were/are not for the clinician to make, were made by the clinician).

But - the change to the FAQs (and 'why now?' is a good question - the MCA had existed for about a decade when the original misleading FAQs were written by ReSPECT, there have been no recent court rulings of any significance, so what has 'suddenly prompted' ReSPECT to correct its FAQs?) - is progress.

On Tuesday, a consultant palliative care doctor [somewhat to my surprise, as it happens] asked me why I am so annoyed with 'ReSPECT'. In response, as well as e-mailing the 2 earlier PDFs in this chain to him, I cobbled together a few observations about the ReSPECT Form yesterday, in the PDF which I am attaching here.

I am aware, that if all of the changes I want to be made to the form were made, then the form would be legally-correct for England and Wales, but not for Scotland and Northern Ireland: but the idea that a single form is satisfactory for several different legal frameworks, is one of my objections to ReSPECT's approach.

However, I would point out that the first of my suggestions (that instead of the ReSPECT form including details of where a written Advance Decision might be found, the ReSPECT form strongly recommends that if you have a written ADRT you should attach it to the front of the ReSPECT form) does not introduce any cross-boundary legal complications, and that alteration could be introduced immediately.

I asked the Care Quality Commission last autumn, if it considered that the ReSPECT Form is consistent with English Consent Law - the CQC claims to inspect 'consent'.

Minutes ago, in opened an e-mail with a response from the CQC. I have not read this in any detail yet, which I will be doing (and my comments to the CQC's response, will be posted in this thread).

This is what the CQC sent to me:

Dear Mr. Stone

Thank you for contacting CQC in your original email of 2 October 2017 and subsequent more recent email of the 21 December 2017 with your concerns about the ReSPECT forms, and affording us the opportunity to respond.

Please accept our sincere apologies for the time it has taken to respond to your query. There was an administrative error which led to your query not being allocated to the right person within CQC in a timely manner. We have been reviewing our system of allocating queries and are putting in place an amended system that will address this.

You kindly shared with us a letter you had written to Alan Eccles of the Office of the Public Guardian dated 4 September 2017 in which you set out helpfully in some detail your concerns with legal reference points, and in your subsequent emails you provided some additional comments. CQC would understand then that your main concern is whether as a regulator we consider that the ReSPECT form and process is fully Mental Capacity Act compliant, and in particular whether the sign-off by a clinician is legally correct, for example if a Lasting Power of Attorney for Health and Wellbeing or other legal proxy is in place.

As you are probably aware, although the work to produce the ReSPECT forms was led by the Resuscitation Council (UK), it was developed by a large working group that included clinical staff (adult and paediatric, as well as primary and secondary care), the royal colleges, social care, patient organisations and representatives and CQC as the regulator, as well as representatives from all four UK countries. Senior and authoritative legal advice was accessed by the working group who devised the form and process.

The overall purpose of the ReSPECT process is to move clinical practice, within all venues of care, away from a binary decision about ‘for’ versus ‘not for’ CPR and more towards a positive discussion between clinicians, patients and their representatives about the medical realities, with consideration for the patient’s circumstances.The form was designed as a general purpose form and the signing of it by a clinician is to be taken as an indication by the clinician that the provisions of the Mental Capacity Act have been followed. By signing the form, the clinician is making it implicit that they have taken account of the patients view, if they had capacity at the time the form was completed. If the patient lacked capacity at the time the form was completed, the clinician confirms by signing that relatives, carers and any Lasting Power of Attorney for Health and Wellbeing or other legal proxy as appropriate was consulted. A decision to provide treatment is a clinical one of course, irrespective of whether the patient does or does not have capacity. Clearly, a patient with capacity may refuse treatment even if that did not seem sensible in terms of the clinical outcomes.

You will know that the Court of Appeal judgement in R (Tracey) v Cambridge University Hospitals NHS Foundation Trust & Ors (2014) clarified that emergency treatment decisions are to be based on clinical judgement, hence the form being ultimately signed by a clinician, but information around treatment options must be given to the patient under duties of consultation and involvement. If a patient lacks capacity then by extension such consultation must take place under the framework of s.4 of the Mental Capacity Act, hence involving any legal representatives and/or family where relevant.

Respect forms are not legally binding, nor are they consent forms or Advance Decisions to Refuse Treatment, rather they are recommendations to guide immediate decision-making. You are aware of the “What is a legal proxy and what is their role?” and “Why is there no section on the ReSPECT form for the signature of the person or their relatives/legal proxy?” responses to the FAQ at http://www.respectprocess.org.uk/faqs.php. CQC do not seek to vary from this position. As you are aware, and reference in your most recent email to CQC dated 21 December, the guidance around legal proxy has recently been updated to clarify “If the attorney has the power to consent to or refuse life-sustaining treatment, and makes clear that they would exercise that power on behalf of the person to refuse treatment in particular circumstances, then in general no recommendation should be made for such treatment to be administered in those circumstances.” This would appear to satisfy your concerns with respect to decision-making but we would note this applies only where Legal Power of Attorney’s are specifically so authorised.

Section 6 subsections (6) and (7) of the Mental Capacity Act clearly describe the provisions and limitations of any person authorised through Lasting Power of Attorney – ie nothing stops a person providing life sustaining treatment while a decision for any relevant issue is sought from the court. This is further explained in the following paragraphs of the Mental Capacity Act Code of Practice:

7.30 An attorney can only consent to or refuse life-sustaining treatment on
behalf of the donor if, when making the LPA, the donor has specifically
stated in the LPA document that they want the attorney to have this
authority.

7.31 As with all decisions, an attorney must act in the donor’s best interests
when making decisions about such treatment. This will involve applying
the best interests checklist (see chapter 5) and consulting with carers,
family members and others interested in the donor’s welfare. In
particular, the attorney must not be motivated in any way by the desire
to bring about the donor’s death (see paragraphs 5.29–5.36). Anyone
who doubts that the attorney is acting in the donor’s best interests can
apply to the Court of Protection for a decision.

In your email of 21 December 2017 you specifically asked “How can the senior clinician, confirm that an attorney or deputy has complied with the MCA: for example, compliance requires widespread consultation with many parties, to be carried out by a best-interests decision-maker - but how would the senior clinician, be aware of consultations which the clinician was not involved in?”. In response we would re-iterate that the clinician in signing is confirming that they are aware of any pertinent consultations. Sections 2 and 6 of the ReSPECT form outline the need to reference other documents that pertain to the completion of the ReSPECT form – in particular section 6 says “Record date, names and roles of those involved in decision making, and where records of discussions can be found”

We issued guidance to our inspectors in February 2017 directing them to consider not just the content of a ReSPECT form when assessing Mental Capacity Act compliance in relevant settings, but how the ReSPECT form fits with a planned process of care, good communication with appropriate persons (thereby including for example Legal Power of Attorney’s) and the wider provisions of the Mental Capacity Act.

We do not require providers to use the ReSPECT process, but expect that they would have an equivalent local policy and process in place if they are not currently using it. ReSPECT forms do not invalidate existing DNACPR instructions, nor other advance care planning. Whilst it is seen that over time ReSPECT forms will replace existing DNACPR instructions, CQC’s position is not relative to the forms themselves, but rather ensuring the provisions of the Mental Capacity Act are being met and that good, effective care is being provided.

We hope that you find this response helpful.
Kind regards
Enquiries Team
Customer & Corporate Services Directorate
National Customer Service Centre
Care Quality Commission
Citygate
Gallowgate
Newcastle Upon Tyne
NE1 4PA.

Tel: 03000 616161
Email: [log in to view email address]

Apologies for some 'deformatting' in the previous post - I did try to check it.

My objections to ReSPECT still stand - see in particular http://www.bmj.com/content/356/bmj.j876/rr-7 where I 'drew most of my objections together' - and, despite my not yet having properly read the CQC's reply, it does contain an obvious 'logical problem':

In your email of 21 December 2017 you specifically asked “How can the senior clinician, confirm that an attorney or deputy has complied with the MCA: for example, compliance requires widespread consultation with many parties, to be carried out by a best-interests decision-maker - but how would the senior clinician, be aware of consultations which the clinician was not involved in?”. In response we would re-iterate that the clinician in signing is confirming that they are aware of any pertinent consultations. Sections 2 and 6 of the ReSPECT form outline the need to reference other documents that pertain to the completion of the ReSPECT form – in particular section 6 says “Record date, names and roles of those involved in decision making, and where records of discussions can be found”

OBVIOUS OBJECTION: The MCA requires that the decision-maker - here the ATTORNEY - carries out the necessary consultations which would inform the DECISION-MAKER's best-interests decision-making: there is NO REQUIREMENT that the senior clinician would be involved in all [or even in the majority] of those consultations - so, the senior clinician CANNOT LOGICALLY 'assert that those consultations took place'.

I have decided to use my ‘normal method’ of commenting on this – which is to insert comments within the text, immediately after the section I am commenting on. Because I can only use plain-text here on DiC, I will need to insert ‘COMMENT STARTS’ and ‘COMMENT ENDS’ markers. I might subsequently ‘do this properly’ - bolds, colours, etc – as a PDF and upload it. I find an assertion the CQC is making about the Tracey court ruling particularly strange - although I admit it has been a few years since I actually read Tracey.

Dear Mr. Stone

Thank you for contacting CQC in your original email of 2 October 2017 and subsequent more recent email of the 21 December 2017 with your concerns about the ReSPECT forms, and affording us the opportunity to respond.

Please accept our sincere apologies for the time it has taken to respond to your query. There was an administrative error which led to your query not being allocated to the right person within CQC in a timely manner. We have been reviewing our system of allocating queries and are putting in place an amended system that will address this.

You kindly shared with us a letter you had written to Alan Eccles of the Office of the Public Guardian dated 4 September 2017 in which you set out helpfully in some detail your concerns with legal reference points, and in your subsequent emails you provided some additional comments. CQC would understand then that your main concern is whether as a regulator we consider that the ReSPECT form and process is fully Mental Capacity Act compliant, and in particular whether the sign-off by a clinician is legally correct, for example if a Lasting Power of Attorney for Health and Wellbeing or other legal proxy is in place.

COMMENT STARTS

Yes – put simply, why isn’t an attorney signing the form, if the recorded decision is legally within the authority of the attorney (ditto with Court Deputies).

COMMENT ENDS

As you are probably aware, although the work to produce the ReSPECT forms was led by the Resuscitation Council (UK), it was developed by a large working group that included clinical staff (adult and paediatric, as well as primary and secondary care), the royal colleges, social care, patient organisations and representatives and CQC as the regulator, as well as representatives from all four UK countries. Senior and authoritative legal advice was accessed by the working group who devised the form and process.

COMMENT STARTS

Yes, I am aware of that huge group of ‘contributors’ and it perplexes me that with such a collection of brain-power, nobody ‘inside ReSPECT’ seems to have properly understood the Mental Capacity Act.

As for ‘Senior and authoritative legal advice was accessed by the working group who devised the form and process’ well, it took an age for its FAQs to be improved where they covered legal proxies, I have got my own [if ‘off-the-record’] ‘senior legal advice’

https://twitter.com/MikeStone2_EoL/status/906073527236907009

and – as the Montgomery and Briggs rulings proved - ‘authoritative legal advice’ is an interesting phrase.

COMMENT ENDS

The overall purpose of the ReSPECT process is to move clinical practice, within all venues of care, away from a binary decision about ‘for’ versus ‘not for’ CPR and more towards a positive discussion between clinicians, patients and their representatives about the medical realities, with consideration for the patient’s circumstances.

COMMENT STARTS

Firstly – our law for Advance Decisions is very clear: a patient can forbid attempted CPR either ‘absolutely’ or with a conditionality (a circumstance which must be present, for the refusal to apply).

The ReSPECT Form is something to do with best-interests decision-making, and we simply should not be trying to promote best-interests decision-making ‘during clinical ‘emergencies’’ about things such as CPR: we should be promoting the making of Advance Decisions by patients, and the following of those ADRTs by clinicians [and by other carers].

COMMENT ENDS

The form was designed as a general purpose form and the signing of it by a clinician is to be taken as an indication by the clinician that the provisions of the Mental Capacity Act have been followed. By signing the form, the clinician is making it implicit that they have taken account of the patients view, if they had capacity at the time the form was completed. If the patient lacked capacity at the time the form was completed, the clinician confirms by signing that relatives, carers and any Lasting Power of Attorney for Health and Wellbeing or other legal proxy as appropriate was consulted.

COMMENT STARTS

The form is ‘too general purpose’ in the sense that it covers countries with different legal frameworks, and both adults and children for whom the laws differ: it is too restricted (not sufficiently ‘general purpose’) in that it specifically cannot also serve as an Advance Decision if the patient wished it to do that.

And – AS I HAVE POINTED OUT – the clinician CANNOT attest that ‘the provisions of the ‘provisions of the Mental Capacity Act have been followed’ because THE CLINICIAN IS ONLY AWARE OF WHAT THE CLINICIAN HAS HIM/HERSELF DONE OR BEEN TOLD OF.

Also – there is NO CONCEPT WITHIN THE MCA of any person who isn’t a Judge ‘validating compliance with the MCA’s best-interests requirements’. There is the concept of ‘challenge’ - which applies to anyone’s best-interests decision-making, but the concept of ‘challenge’ is VERY RESTRICTED INDEED if the decision-maker is an empowered attorney or deputy: sections 6(6) and 6(7) of the Act, or section 7.29 of the Code of Practice:

7.29 Attorneys must always follow the Act’s principles and make decisions in the donor’s best interests. If healthcare staff disagree with the attorney’s assessment of best interests, they should discuss the case with other medical experts and/or get a formal second opinion. Then they should discuss the matter further with the attorney. If they cannot settle the disagreement, they can apply to the Court of Protection (see paragraphs 7.45–7.49 below). While the court is coming to a decision, healthcare staff can give life-sustaining treatment to prolong the donor’s life or stop their condition getting worse.

I would highlight ‘While the court is coming to a decision’.

COMMENT ENDS

A decision to provide treatment is a clinical one of course, irrespective of whether the patient does or does not have capacity.

COMMENTS STARTS

I prefer ‘offer’ to ‘provide’ - the general concept is that clinicians are not required to offer a treatment which would be clinically ineffective, but for CPR there is also section 4(5) of the MCA to be considered.

COMMENT ENDS

Clearly, a patient with capacity may refuse treatment even if that did not seem sensible in terms of the clinical outcomes.

You will know that the Court of Appeal judgement in R (Tracey) v Cambridge University Hospitals NHS Foundation Trust & Ors (2014) clarified that emergency treatment decisions are to be based on clinical judgement, hence the form being ultimately signed by a clinician, but information around treatment options must be given to the patient under duties of consultation and involvement.

COMMENT STARTS

No – I didn’t ‘know’ that.

So far as I’m aware, Tracey was about the communication to patients and relatives of opinions held by clinicians that attempted CPR ‘could not be clinically successful’, when the clinicians have decided to not attempt CPR based on their opinion that attempted CPR would not be successful.

Which IS NOT ‘emergency treatment decisions are to be based on clinical judgement’.

FURTHERMORE that sentence in the e-mail from the CQC is NOT CONSISTENT WITH the revised ReSPECT FAQs, which do make it clear that ‘best interests’ still applies during emergencies – the relevant section of the FAQs is:

‘Where emergency treatment has been started as a result of a recommendation, then as part of the continuing review of the person’s care and updating of the ReSPECT recommendations, the attorney should be consulted as soon as practicable to confirm whether they agree that the treatment should continue. If the attorney does not agree, then, again save in exceptional circumstances, the treatment must stop (including life-sustaining treatment if the power of attorney specifically contains the power to refuse such treatment).’

I fully support the idea that any record of ‘in my opinion attempted CPR could never be successful irrespective of why this patient arrests’ should be signed by the clinician whose opinion that it – that ISN’T ‘emergency treatment decisions are to be based on clinical judgement’!

COMMENT ENDS

If a patient lacks capacity then by extension such consultation must take place under the framework of s.4 of the Mental Capacity Act, hence involving any legal representatives and/or family where relevant.

COMMENT STARTS

This is so legally-flawed in terms of its lack of clarity and ambiguity, that I’m wondering if it was written by the RC(UK) – it most definitely would NOT have been penned by the CQC’s former MCA Lead. Section 4 of the MCA, along with 6(6) and 6(7) certainly explain the ‘rules’- but that sentence is NOT a useful and unambiguous description of s4 and 6(6/7).

COMMENT ENDS

Respect forms are not legally binding, nor are they consent forms or Advance Decisions to Refuse Treatment, rather they are recommendations to guide immediate decision-making. You are aware of the “What is a legal proxy and what is their role?” and “Why is there no section on the ReSPECT form for the signature of the person or their relatives/legal proxy?” responses to the FAQ at http://www.respectprocess.org.uk/faqs.php.

COMMENT STARTS

Yes, I’ve read the ReSPECT FAQs. The FAQs covering legal proxies have been belatedly improved significantly (see above, as an example of that improvement).

The explanation as to why patients, legal proxies and ‘relatives’ are being prevented from signing the ReSPECT Form is, however, ‘deeply unsatisfactory’ - and very obviously so for empowered legal proxies [the argument for ‘relatives’ is more intricate – but I believe still compelling]

COMMENT ENDS

CQC do not seek to vary from this position.

COMMENT STARTS

Yes, I’ve gathered that from this reply to me – however, I would rephrase that as ‘the CQC intends to support a ‘legally-perverse absence of non-clinical signatures on the ReSPECT Form’’.

COMMENT ENDS

As you are aware, and reference in your most recent email to CQC dated 21 December, the guidance around legal proxy has recently been updated to clarify “If the attorney has the power to consent to or refuse life-sustaining treatment, and makes clear that they would exercise that power on behalf of the person to refuse treatment in particular circumstances, then in general no recommendation should be made for such treatment to be administered in those circumstances.” This would appear to satisfy your concerns with respect to decision-making but we would note this applies only where Legal Power of Attorney’s are specifically so authorised.

COMMENT STARTS

That doesn’t address an issue I pointed out to the CQC via my Letter to the OPG:

‘More importantly, because of 6(6) if the attorney signs the ReSPECT form, the 'recommendation' about what is likely to be in the patient's best interests directly carries the legal authority of the attorney 'to the reader's eye': there is no genuine 'legal authority' over best-interests decision-making, carried by the signature of a clinician.’

COMMENT ENDS

Section 6 subsections (6) and (7) of the Mental Capacity Act clearly describe the provisions and limitations of any person authorised through Lasting Power of Attorney – ie nothing stops a person providing life sustaining treatment while a decision for any relevant issue is sought from the court. This is further explained in the following paragraphs of the Mental Capacity Act Code of Practice:

7.30 An attorney can only consent to or refuse life-sustaining treatment on
behalf of the donor if, when making the LPA, the donor has specifically
stated in the LPA document that they want the attorney to have this
authority.

7.31 As with all decisions, an attorney must act in the donor’s best interests
when making decisions about such treatment. This will involve applying
the best interests checklist (see chapter 5) and consulting with carers,
family members and others interested in the donor’s welfare. In
particular, the attorney must not be motivated in any way by the desire
to bring about the donor’s death (see paragraphs 5.29–5.36). Anyone
who doubts that the attorney is acting in the donor’s best interests can
apply to the Court of Protection for a decision.

COMMENT STARTS

It isn’t obvious why there is a mixture of Act and Code being quoted here – however, if 7.30 and 7.31 were being quoted, then instead of sections 6(6) and 6(7) of the Act being mentioned, it would instead have made sense to use section 7.29 of the Code:

7.29 Attorneys must always follow the Act’s principles and make decisions in the donor’s best interests. If healthcare staff disagree with the attorney’s assessment of best interests, they should discuss the case with other medical experts and/or get a formal second opinion. Then they should discuss the matter further with the attorney. If they cannot settle the disagreement, they can apply to the Court of Protection (see paragraphs 7.45–7.49 below). While the court is coming to a decision, healthcare staff can give life-sustaining treatment to prolong the donor’s life or stop their condition getting worse.

COMMENT ENDS

In your email of 21 December 2017 you specifically asked “How can the senior clinician, confirm that an attorney or deputy has complied with the MCA: for example, compliance requires widespread consultation with many parties, to be carried out by a best-interests decision-maker - but how would the senior clinician, be aware of consultations which the clinician was not involved in?”. In response we would re-iterate that the clinician in signing is confirming that they are aware of any pertinent consultations. Sections 2 and 6 of the ReSPECT form outline the need to reference other documents that pertain to the completion of the ReSPECT form – in particular section 6 says “Record date, names and roles of those involved in decision making, and where records of discussions can be found”

COMMENT STARTS

This is a ‘complete logical mess’, and obvious issues include:

1) Why does the ReSPECT Form ‘reference Advance Decisions’ instead of stating in its Box 2 ‘if you have made an Advance Decision clip it to the front of this ReSPECT Form’ - a point I made in an e-mail to the new President of the RC(UK) just a few hours before I opened this response from the CQC;

2) ‘In response we would re-iterate that the clinician in signing is confirming that they are aware of any pertinent consultations.’ is such a ‘logically bonkers’ reply to ‘how would the clinician be aware of things the clinician was not involved in?’ that it defies a really concise analysis: however, I will be writing further about this issue separately.

COMMENT ENDS

We issued guidance to our inspectors in February 2017 directing them to consider not just the content of a ReSPECT form when assessing Mental Capacity Act compliance in relevant settings, but how the ReSPECT form fits with a planned process of care, good communication with appropriate persons (thereby including for example Legal Power of Attorney’s) and the wider provisions of the Mental Capacity Act.

COMMENT STARTS

Assuming that guidance is more than the sentence I have just read there, I WOULD LIKE TO READ IT.

COMMENT ENDS

We do not require providers to use the ReSPECT process, but expect that they would have an equivalent local policy and process in place if they are not currently using it. ReSPECT forms do not invalidate existing DNACPR instructions, nor other advance care planning. Whilst it is seen that over time ReSPECT forms will replace existing DNACPR instructions, CQC’s position is not relative to the forms themselves, but rather ensuring the provisions of the Mental Capacity Act are being met and that good, effective care is being provided.

COMMENT STARTS

It seems to me that the CQC and I both share an objective:

‘ensuring the provisions of the Mental Capacity Act are being met’

but that the CQC and I differ about what the Mental Capacity Act says.

COMMENT ENDS

CLOSING COMMENT

I will be asking the CQC for that guidance

‘We issued guidance to our inspectors in February 2017 directing them to consider not just the content of a ReSPECT form when assessing Mental Capacity Act compliance in relevant settings, but how the ReSPECT form fits with a planned process of care, good communication with appropriate persons (thereby including for example Legal Power of Attorney’s) and the wider provisions of the Mental Capacity Act.’

unless I can find it online.

COMMENT ENDS

We hope that you find this response helpful.
Kind regards
Enquiries Team
Customer & Corporate Services Directorate
National Customer Service Centre
Care Quality Commission
Citygate
Gallowgate
Newcastle Upon Tyne
NE1 4PA.

Tel: 03000 616161
Email: [log in to view email address]

I sent an e-mail to the Care Quality Commission, asking where that guidance about the MCA it gives to its inspectors is - here is my e-mail, and the reply I opened today (not a reply I'm happy with - we should be able to read that guidance, because 'it affects patients and relatives'):

MY E-MAIL to CQC:

Dear Enquiries,

I would like to read the guidance you mentioned in your e-mail to me:

'We issued guidance to our inspectors in February 2017 directing them to consider not just the content of a ReSPECT form when assessing Mental Capacity Act compliance in relevant settings, but how the ReSPECT form fits with a planned process of care, good communication with appropriate persons (thereby including for example Legal Power of Attorney’s) and the wider provisions of the Mental Capacity Act.'

If that guidance is available to read somewhere online, would you please send me the necessary URL.

If not, then do you require me send you an FOI requesting it, or will you simply send it to me?

Regards, Mike Stone

CQC REPLY to me:

Dear Mike,

Thank you for contacting the Care Quality Commission (CQC), your enquiry reference is ENQ1-4842866420.

In relation to your query, unfortunately, the document you are referring to is only available internally. However please see our Right here, right now: Mental health crisis care reviewwebpage for information.

I hope that this helps. If you have any further queries please do not hesitate in contacting us again.

We welcome feedback and your thoughts, comments and suggestions are very valuable to us. Please share your experience with us by clicking here.

Yours sincerely,

I have attached a PDF version of the e-mail to me from the Care Quality Commission in response to my complaint that the signatures on the ReSPECT Form fail to correctly-reflect England's 'consent law' (the CQC claims to inspect 'compliance with consent law'). The PDF version uses colour to distinguish the CQC's e-mail to me from my comments about the e-mail, so it is probably easier to read than the previous posts in this thread which covered the same ground.

I have recently read a Welsh DNACPR Policy, an NHS England (and others) document relating to people who are living with dementia and ACP, and this piece ' It’s the listening, stupid!' which I have just written, 'links' those two things with an RCP EoLC podcast and also to my long-standing objections to ReSPECT.

I pointed out at the start of the piece:

Target audience: Welsh CPR/DNACPR/EoL ‘group’, NHS England EoL Lead, NHS England Dementia Team, ReSPECT Leads, doctors who talked in a recent RCP EoLC podcast.

So I will be attempting to point those clinicians, at this piece, using e-mails and Twitter. Towards the end of the piece, I outline some principles, which if used would result in very different 'end-of-life documents' - before I do that, I explain the problems with the 'DNACPR forms', etc, which clinicians are designing and using at present.

I hope we can make progress, and achieve satisfactory perspective-balanced behaviour for end-of-life - because, as I point out in my piece:

Me on Twitter:

The law is badly understood, badly applied and the best chance of stopping CPR is to have a Welfare Attorney saying 'don't do it' and waving MCA 6(6) & 6(7) under HCAs noses, in addition to an ADRT refusing CPR.

A reply from someone else who understands our law and also how 999 paramedics currently behave:

Yep - but not even this will stop someone doing CPR on me. Two different intensivists in 2 different HCP/academic seminars recently said they'd give me CPR despite the law (which I'd explained to them) because it was "the right thing to do" and I'd "thank them for it later".

As I ask in my piece:

How can this horrible Situation of Conflict be changed to one of Genuine Working Together to Support Patients?

I discovered a couple of minor mistakes in 'It's the Listening, Stupid!' yesterday after posting it (missed out 'decision' from a heading, and missed out a ']' as well).

But, I also noticed that I had written something in Note 1 on the PDF I link to near the end of ITLS, which I would not be writing now.

When I constructed the PDF I point at on the final page of 'It's the Listening, Stupid!', I was very aware of [flawed!] claims that verbal refusals of CPR are not 'legally binding' but have to be considered as part of best-interests decision-making – this is probably why I mentioned 'genuine best-interests' in note 1. The description of the logic is fine – but, these days, I would simply say that the verbal refusal of CPR is part of the 'patient autonomy' aspect of our consent law (part of 'informed consent' which is described in sections 1-3 of the Mental Capacity Act). I now tend to use 'genuine best-interests' to differentiate between decisions made with an understanding of section 4(6) of the MCA, from 'resorting to 'necessity': I use 'genuine best-interests decision' to describe a best-interests decision made WITH an understanding 'of the patient's individuality', as compared to 'the resort to 'necessity' which inevitably happens if a best-interests decision is being made WITHOUT and understanding of the patient's individuality'.

There is a recent discussion Webinar about changes to the MCA and the MHA at:

https://www.scie.org.uk/mca/practice/webinar/?utm_campaign=9856290_SCIELine%2019%20September%202018&utm_medium=email&utm_source=SCIE&utm_sfid=003G000002SWPbUIAX&utm_role=Other&dm_i=4O5,5V95U,M2GC48,MY02Y,1

It is about an hour long, and is probably 'specialist listening'. Baroness Ilora Finlay, after recounting a really interesting story about a lady living in a care home (see below), points out that to correctly apply the MCA:

'You have to know about the individual person'.

Now, Baroness Finlay is very keen to point at 'the 5 principles' of the MCA as the thing we should be 'teaching' - whereas I would prefer to instead use my approaches at:

https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/MCA-Best-Interests-compressed-to-a-single-sentence-an-ansatz/972/

https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/A-paper-by-Kitzinger-et-al-about-the-Briggs-ruling-and-MCA-best-interests-is-well-worth-reading-and-my-but-if-you-were-a-welfare-attorney-analytical-tricktool./950/

but Baroness Finlay is spot-on: the MCA is about the application of this 'the INDIVIDUAL person' concept to decisions which are made in the context of the other information relevant to the decision. So, where does this idea that 'the professionals should be making the decisions' come from? - it isn't the professionals who 'know about the individual person', it is the person's close family and close friends who know about 'the individual person'.

The story is at 20:00 minutes in the webinar. The lady, who presumably had severe dementia, living in the care home would become very agitated whenever it was snowing, and the staff couldn't understand why. One day her son told them: 'she used to work for the Met Office, and her job was to measure the snow'. So the care home let her go outside and measure the snow, then set up a 'fake' phone call for her to report back to the Met Office, and the problem was solved.

It isn't understanding the treatment options, different future consequences of the various possible best-interests decisions, etc, THAT MATTERS THE MOST, although of course you do need to understand those things: what matters is understanding how the best-interests decisions made, WILL AFFECT THAT PARTICULAR INDIVIDUAL.

I was contacted by e-mail, a month or two ago, by a family-carer who was really upset by the appearance of a ReSPECT Form. The person suggested in our e-mails, that it was bad luck to be living in an area which is already using the ReSPECT Form. I realised that I couldn't answer the implied question - 'how widely has ReSPECT already been adopted?', and when I sent an e-mail to the ReSPECT Team, I wasn't given the answer.

So I decided to ask, using freedom-of-information requests.

Almost all of England's Clinical Commissioning Groups were asked (in essence 'are the GPs in your area using the ReSPECT form?') and I have responses from almost all of England's CCGs, and I asked samples of hospitals and community trusts as well.

I haven't actually tested all of the hyperlinks - but I've checked a few, not yet found any that don't work, and I think they are probably all okay (well - not necessarily all of the URLs in the responses, but the URLs in the 'wider' sections of the piece).

This survey gives an idea of how widely ReSPECT has been rolled out already, and also of why some areas are keener to continue to use their existing approaches to ACP, etc. Be warned - it is very long, and probably only of interest to 'specialist readers'.

I received a reply from Luton and Dunstable Hospital Foundation Trust to my GMX Mail on 15 July, with a covering e-mail which was rather apologetic:

The Trust is very sorry for the delay in our response.
Our response is now attached and I would like to offer you my apologies on behalf of the Trust for the delay in providing this. I would also like to take this opportunity to assure you that the Trust is currently reviewing its FOI process.

The actual response, was:

No, the Trust is not producing or using the main ReSPECT form. However, the local end of life care group representing different organisations across the health economy are considering adopting the process as a part of the local strategy.

Herefordshire CCG, sent me a response which stated that both the GP and the patient are signing their ReSPECT Forms. To cut a long story short, the reply was wrong: I talked to the ReSPECT Lead for Herefordshire yesterday morning, and she has sent me an e-mail yesterday afternoon which says:

It was helpful and very interesting to talk with you on the phone this morning and expand on your views about the ReSPECT form, we agreed that your particular queries do not relate specifically to Herefordshire. However you were particularly interested in the statement made by Herefordshire CCG in our email response (06/06/2019) to your enquiry that ‘both parties’ sign the completed ReSPECT form. I explained that this element of the CCG response was inaccurate as the form is signed by the responsible clinician only. Having looked into this further I am sorry to say that this was a genuine error on the part of a colleague who was keen to provide information without delay to answer your query and misinterpreted our local policy. As I outlined on the phone I can confirm that in Herefordshire the ReSPECT form is not signed by the patient or their legal proxy. I apologise for any confusion this might have generated.

I am still rather puzzled, by how misinterpretation could lead to the response that I received (a response which to me, looks exactly like what SHOULD BE happening with the ReSPECT form - and which is 'very rational and coherent') - page 51 of my survey write-up:

https://www.dignityincare.org.uk/Discuss-and-debate/download/376/

We are in the process of implementing the ReSPECT forms across Herefordshire.
The GPs in the NW locality are taking the lead. This is a staged process and all GPs across Herefordshire will be offering this process over the next year.

All professionals are offered training and awareness sessions. If a patient attends a practice the GP should be able to offer this service, the patient will need to book an appointment as is can take some time to answer all the questions fully and once patient and GP are happy with the content then the form is signed by both parties. A copy is kept on the electronic health record at the practice and the original is kept by the patient.

The patient is encouraged to share the content of the form with their family and
other professionals with whom they are in contact with.

Apparently, the next version of the ReSPECT Form is being 'thought about' at the moment. The attached PDF, builds on my suggestion in 'It is the Listening stupid' (which you can download from my 23/04/18 post in this thread) that it would be possible to design forms such as the ReSPECT Form very differently, and in a way that reflects 'multi-party involvement' correctly. However - that would also result in forms 'which had no clear, single 'owner''.

I'm clear in my own mind, that we already have laws which do not fit with the idea that many decisions 'have a single owner' [some do - but whereas Informed Consent involves 'single ownership of decisions', Best Interests decision-making usually can't be described correctly using the 'single ownership description'] and therefore 'NHS forms' should reflect that.

But - it will require a fundamental shift in 'mindset' of doctors and NHS Trusts, for 'diffuse ownership' to be properly accepted and incorporated into NHS forms and NHS protocols, etc.

I wrote a really short BMJ rapid response in 2017

https://www.bmj.com/content/358/bmj.j3257/rr-4

which commented on this issue, titled 'Diffuse is really 'awkward' for 'the NHS' Re: Are you ready for “collaborative health”?'.

We seem to be in the problematic situation at the moment, of clinical beliefs and behaviours which are lagging considerably behind recent legal changes.

I have just received a response to my ReSPECT Survey [with an apology for 'lateness of reply'} from Birmingham Community Healthcare NHS Foundation Trust, dated 18 September. The response is:

Birmingham Community Healthcare NHS Foundation Trust has not yet gone live with the implementation of the ReSPECT document, but is prepared to do so at the same time as the Primary Care providers (General Practitioners).

Is it the Process, or ‘the Records’, which should come first?

I’ll try to keep this ‘simple’ in the sense that I will not be including lots of links ‘to the proofs’ [the court cases, logical analyses, etc], so this will be a distinctly ‘rule-of-thumb’ and ‘incomplete’ piece. But, I believe it describes a fundamental issue which has to be resolved, despite those shortcomings.

I’ll start by pointing out two things. The first, is that most of the NHS, especially hospitals, work with a doctor-led ‘hierarchy’ and are very dependent on written records and written instructions: whereas I think that during end-of-life-at-home, the patient’s family-carers and relatives do not have such rigid ‘hierarchy’, are ‘led by the decisions of their dying loved-one’, and not only are much less influenced ‘by the records’, but family-carers will usually have little understanding of ‘NHS record keeping’. The second, is the observation that 999 Paramedics are increasingly becoming involved in end-of-life situations, and whereas traditionally the 999 staff would have very much defaulted to ‘preservation of life’, during long-term involvement with terminally-diagnosed patients, the decision-making rule which those people supporting the patient on a long-term and ongoing basis are legally required to apply is the Mental Capacity Act. And for life-sustaining ‘emergency’ interventions, the MCA does NOT describe ‘preservation of life FIRST’ – it actually describes ‘if possible first make a best-interests decision, which could lead to the withholding of potentially-successful life-sustaining treatment – and IF YOU CANNOT MAKE A ‘GENUINE’ BEST-INTERESTS DECISION then you should default to ‘preservation of life’.

I said I would not fill this piece with web-links, and I will not do so: but I will explain that in his Briggs ruling, Mr Justice Charles explained this two-stage approach [implicitly if not explicitly] when he wrote:

62. But, in my view when the magnetic factors engage the fundamental and intensely personal competing principles of the sanctity of life and of self-determination which an individual with capacity can lawfully resolve and determine by giving or refusing consent to available treatment regimes:

i) the decision maker and so a judge must be wary of giving weight to what he thinks is prudent or what he would want for himself or his family, or what he thinks most people would or should want, and

ii) if the decision that P would have made, and so their wishes on such an intensely personal issue can be ascertained with sufficient certainty it should generally prevail over the very strong presumption in favour of preserving life.

Mr Justice Charles wrote that during his December 2016 ruling, and I had written in a BMJ piece in January of 2016:

An honest consideration of section 4 of the Act, first requires a person to answer the question 'Am I sufficiently well-informed to properly consider section 4, and thereby to defensibly claim compliance with section 4(9) ?'. If the answer is no, you would not be involved in 'mediation' [about 'what is the best best-interests decision']. If the answer is 'yes', then your own best-interests decision is the one you must follow: that is obvious, from the wording of 4(9).

Mr Justice Charles was expressing this as ‘if the decision that P would have made, and so their wishes on such an intensely personal issue can be ascertained with sufficient certainty’ and I used ‘Am I sufficiently well-informed to properly consider section 4, and thereby to defensibly claim compliance with section 4(9) ?’. But what we were both saying, is that for something such as CPR or the withdrawal of CANH the MCA does NOT describe some sort of balance between making a best-interests decision and preservation of life. Instead, what the MCA describes is this:

1) If the person making the decision, understands enough about the things in section 4(6) of the MCA (essentially ‘if the incapacitous person could have decided, what would the person have decided?’) then a best-interests decision is made – and a best-interests decision can be EITHER ‘withhold the treatment or apply the treatment’,

and

2)If the person making the decision doesn’t understand enough about section 4(6), then preservation of life is then the decision to be followed.

My problem with ReSPECT [and with much other contemporary writing of clinicians] is that what I keep reading – which amounts to ‘the family-carers would provide information to a 999 paramedic, and then the paramedic would decide whether to apply or withhold an intervention’ – DOES NOT fit with the logic of what Mr Justice Charles and I both wrote. Because section 4(6) ‘requires an understanding of the patient AS AN INDIVIDUAL’:

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

There is absolutely NO WAY that an emergency clinician, who has never met the patient, could CONSIDER the things in MCA 4(6) – in particular, those in parts (b) and (c).

WHEREAS THE FAMILY-CARER WHO CALLED 999 MIGHT BE ABLE TO.

So, you get to the things I wrote in a BMJ piece which I will give the link to:

https://www.bmj.com/content/356/bmj.j876/rr-7

a)it is clear from section 4 of the ReSPECT form (‘Clinical recommendations for emergency care and treatment’), and also from other material on the RC(UK) and ReSPECT websites, and my e-mail communications with various clinicians, that there is a prevailing ‘medical opinion’ that ‘CPR is a clinical decision’. It is not: the method of performing CPR is ‘a clinical decision’, but whether CPR should be attempted is not a ‘clinical decision’. It might be a decision a clinician is forced to make – but it is either a normal ‘consent’ decision or else it is a best-interests decision, assuming there is any prospect of CPR restoring life. And best-interests decisions require an understanding of the factors in section 4(6) of the MCA, which are not things an emergency clinician can possibly possess an understanding of. So as Pitcher and Spiller agree on that point, logically they should agree with me (4, 5) that 999 paramedics should provide family carers with clinical information, and then defer to the family carers for best-interests decision-making. Please note: I am not saying the MCA requires such deference – I am saying, that it would follow from the logic of ‘we should be making the best decision’ if it is accepted that the family carer has a superior ‘holistic understanding of the situation’ (6).

and

To Close: (hypothetical)
I have been sharing a home with my now ‘dying partner’ for 20 years, although my partner has only been ‘dying’ for about six months. I have talked to my partner a lot during this six months, and during those 20 years. The GP has talked to my partner a little, especially recently. We both talk to the district nurses who have visited a couple of times a week for the last 6 weeks – but they are often different nurses each visit.
My partner has just collapsed. I have called 999 to find out why my partner has collapsed. I am now standing over a 999 paramedic, who is doing something to my unconscious partner. Why on earth, should I accept that this paramedic decides what happens next ?

This piece is probably a challenge to follow – and whenever I try to write it ‘properly’, it expands to ‘book length’ – but it is at the heart of my objections to ‘ReSPECT as it currently stands’. I apologise, if the only person who can decipher the above is myself – I have felt the need to write it!

The important message to take away, is that the MCA leads, for potentially-successful cardiopulmonary resuscitation (CPR), to not ‘a balance between best-interests and preservation of life’ but a two-step process: first, ‘if I understand enough to make a ‘genuine’ best-interests decision, then I must do that’ FOLLOWED BY ‘and if I don’t understand enough to make a best-interests decision, then I must attempt to preserve life’.

@MikeStone2_EoL

PS This is also why I wrote my DNACPR Decision Hierarchy as I did:

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 Act))

4 A DNACPR decision made by any person who is sufficiently
informed of the patient‘s clinical 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

The point being, that in my opinion whereas family-carers and other relatives or close friends might fit in at no 4, it is conceptually-impossible for emergency clinicians to fit in at no 4: hence my careful wording of no 5, which does NOT involve people such as 999 paramedics 'making a best-interests decision' - instead it involves 'guiding emergency clinicians towards the 'correct' behaviour'.

I've swapped some Twitter direct messages with a doctor over the past couple of days, and I'm going to share a message the doctor sent me. The mere fact that the doctor took the time to write and send it to me, reveals the doctor's passion to improve end-of-life care/behaviour. But I'm sharing it, because it concisely sums up the issues I've been writing about for years, and as well it describes the 'development chain' of what I will call DNACPR Documentation.

The only sentence I really 'take issue with', is the doctor's:

'However, although newer forms including ReSPECT now acknowledge DNACPR status 'because the patient wishes it,' we haven't progressed to the point that the person wishing it countersigns their wish.'

I have a problem with the word 'wish': if the patient has decided, then it isn't 'the patient's wish' it is 'the patient's decision', and it should be described using the word decision [or instruction]. I can wish for nice weather tomorrow, but I cannot decide that the weather will be nice tomorrow

https://www.bmj.com/content/354/bmj.i3888/rr/927045

There are a couple of things in what the doctor wrote, which warrant comment [and I have already partially commented on one of them]. The first is this section:

'Initially, this led to a form that told would-be reuscitators, usually fellow clinicians in hospital and possibly less enlightened than the person writing the form, not to start CPR. It was, at that time, a 'doctor's order' to enable colleagues to stand down with 'medical permission.'

This is still deeply problematic, despite us now having the Mental Capacity Act to work with. In the MCA, there is a 'sort of provision' for senior clinicians to 'instruct' more junior [or indeed, simply less-informed] clinicians, in the form of section 42 and its provision for Codes of Practice. And in the Code of Practice, clinicians are told that when life-sustaining interventions involved, professional guidance should be considered. However, as I've frequently written, 'section 42 is problematic in practice'. And currently we have (as I'm sure I've pointed out in this thread about ReSPECT, and more recently in threads such as

https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/I-have-a-suggestion-for-how-family-carers-and-999-paramedics-could-be-reconciled-for-CPR-decision-making-feedback-from-family-carers-welcomed./1031/

among others) an unsatisfactory situation when it is implied that by reading documentation during 'a clinical emergency' newly-introduced clinicians, such as 999 paramedics, can MAKE satisfactory best-interests decisions. Clearly that isn't logically possible.

The second thing the doctor wrote, which I will briefly discuss, is:

'However, although newer forms including ReSPECT now acknowledge DNACPR status 'because the patient wishes it,' we haven't progressed to the point that the person wishing it countersigns their wish.
And what of a Best Interests DNACPR? Should all witnesses to the BI process sign? Or a representative of the patient? It's tricky.'

An issue which arises, as soon as you allow a mixture of lay and clinical signatures on a form - especially on a form which is as complex as the ReSPECT Form - is 'who 'owns' the form?'. The answer will often be 'nobody can be identified as 'owning the form'': different individuals 'own' different entries in the form, and it isn't clear to me that 'the NHS' can cope with the complexity of that. I wrote about 'ownership' in my thread at:

https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/Perspective-during-EoL-destroyer-of-bridges-builder-of-silos./998/

and in particular in the first PDF which you can download.

Now, this is the - truly EXCELLENT - Twitter direct message, sent to me by the doctor:

Yes: 'we're in this together' is vital.
Thinking about all those forms and signatures... I see it a bit like a journey from 'Doctor knows best' to 'all in this together.'
Enlightened practitioners agreed with patients and families that a point is reached when 'doing everything' is no longer the most important thing. Initially, this led to a form that told would-be reuscitators, usually fellow clinicians in hospital and possibly less enlightened than the person writing the form, not to start CPR. It was, at that time, a 'doctor's order' to enable colleagues to stand down with 'medical permission. All this, of course, pre-dates the MCA.
I suspect that the origin of the 'DNR' form, as it was then, has muddied the waters ever since.
First, the existence of a form allowed clinicians to fill it in and sign it without discussion with patient and family, as Kate Masters and family discovered. This is at odds with the original intention around the form, but already the workforce had forgotten/never been taught how the form originated in conversations before decisions were reached.
Secondly, the doctor's signature on the early DNR forms was to take 'medical responsibility' for colleagues following an instruction not to resuscitate, because we require a responsibility trail for medical actions/inactions that result in a death.
As more nuanced iterations of the DNR form and associated conversations were developed, including the title change to the more accurate 'Do Not Attempt...' forms, that medical decision-making signature has persisted, and rightly so. However, although newer forms including ReSPECT now acknowledge DNACPR status 'because the patient wishes it,' we haven't progressed to the point that the person wishing it countersigns their wish.
And what of a Best Interests DNACPR? Should all witnesses to the BI process sign? Or a representative of the patient? It's tricky.
Like so many things that are welcome developments in medicine, moving from 'what we used to do' to 'how we'd like to do it' involves a series of changes that each throws up unexpected consequences, potential misunderstanding, and frustrations for those who have a clear vision for a better future yet find their vision gets bogged down in process.
No signatures makes it hard to trace who takes responsibility when a DNACPR document (or any other plan for care in a crisis) is put in place. Not necessarily responsibility for making the decision (the old 'Doctor Knows Best' model), but responsibility for ensuring that interested parties have had sufficient information, support and time to reach that decision - patient, Attorneys, clinicians.
I wonder how we will reach the point where a person can collapse at home, amongst their dear people who know their wish 'not to be interfered with,' and it will be a matter of course that an attending ambulance crew accept the family's word that this person does not wish for CPR, IV drugs, etc. Likewise, that we can attend our dear person as they die at home, and not be questioned by the authorities as though we murdered them afterwards.
In most of the UK, cot deaths are still investigated by police officers in uniform: another example of inhumane practice. We must do better by bereaved families.
I share your frustrations.
I'm so glad you're remaining invested in helping to find solutions.

The ReSPECT website, has revealed [although not, in my opinion, particularly prominently], that the next version of the main ReSPECT Form is currently being developed, and presumably will appear soon (I hope there will be some pubic consultation, before the revised form appears in its final iteration).

I hope, the next version of the form, will make it clear that both care and decision-making, involves both clinicians and family/friends. That it requires genuine teamwork, to provide the best-achievable support for patients. And that, to use my phrase, ‘involving the NHS, does not imply that my loved-one has been ‘handed over to’ the clinicians’.

That, the answers to two of my Twitter Polls (see below), which while being very challenging for an NHS which ‘likes hierarchy’, are in essence correct – and that because these answers ARE correct, the attitude of ‘the senior clinician ‘controls things’’ is a mindset which HAS TO change.

During a discussion on Nursing Times (online) a few years ago, someone – probably a nurse – posted this:

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

I recently carried out a Twitter Poll, and the result seems to be in line with my views:

https://twitter.com/MikeStone2_EoL/status/931819196207509504

I asked this question in my poll, and offered 3 answers: 60 people voted, and I show the results:

A mentally-capable adult is 'dying' ['end-of-life' = 'sometime within predicted final year of life'] at home. Who should the family-carers living with their dying loved-one be taking instructions from? Please retweet - an analysis of answers would be 'interesting'.

From the dying patient 92%
From the GP and nurses 2%
From nobody 6%

Total votes cast 60

In an earlier poll on Twitter, I had asked a related question:

https://twitter.com/MikeStone2_EoL/status/919195401898680321

An 82 years old man is diagnosed as terminal. He and his 79 years old wife ‘invite clinicians to help while he dies’. Does that invitation of itself, imply that if he loses the ability to make his own decisions, he wants the clinicians, and not his wife, to make them?

Yes it does 8%
No it does not 92%

Total votes cast 79

There is a new version of the ReSPECT form.just published. I have not looked at it yet, but I hope you can.download the specimen form from

https://www.resus.org.uk/sites/default/files/2020-09/ReSPECT%20v3-1-formSPECIMENFINAL.pdf

There is some discussion on the ReSPECT website of why the form was changed, and what it is hoped the new version will achieve/promote, etc.

My.comments will follow, after I have looked at the material.

I spent a couple of hours yesterday, attempting to explain why I feel unable to recommend even the new version of the ReSPECT form, from my position as a family-carer during end-of-life at home.

The file did not attach on my previous attempt - I do not understand why, and I am trying again.

Third attempt to upload the file.

Fourth go!

I think I might have worked out the problem.

Nope - still no success.

Nope - still no success.

https://www.dignityincare.org.uk/Discuss-and-debate/download/420/

My comments on the new version of the ReSPECT form can be downloaded from the above link.

Hi Mike
Yet again you summarize the issues well, and I accept that the fact that there is nowhere for the person to sign is a key factor. In my case my mother and I have discussed the form and attached a note signed by us both that says we agree with the decisions outlined. While I know this has no legal standing [but then neither does the form], it does at least indicate that we are both aware of the contents. For me as I do not live with her and she lives on her own this was particularly important as we did not want her wishes to be overridden just because there was no one else there. This is a thorny issue and there is probably no one solution that is going to get us to a point where we are all happy. Keep up the good work of challenging and making people think about the issues.

I could feel myself growing increasingly 'annoyed' yesterday morning - and I assume the reason is connected to my latest piece about EoL/MCA/CPR which I posted on Tuesday:

https://www.dignityincare.org.uk/Discuss-and-debate/download/430/

Partly I am irked that [at least] twice I wrote Charle's when I should have written Charles' (immediately obvious after I had posted my piece - but invisible to me while proof-reading).

But I think, my annoyance is much deeper. I think it stems from the impossibility of debating EoL/MCA/CPR without digging into 'nerdy legal analysis' in combination with my particular and continuing anger about the ReSPECT Form. Which without getting legally nerdy, can be expressed as follows.

The word that keeps surfacing in my mind, having been involved in EoL/MCA/CPR for about a decade, is OUTRAGE.

I am outraged, that it appears the best the 'clinical establishment' can come up with, is a ReSPECT Form which implies that a best-interests decision about CPR can be made DURING an arrest - as a former family-carer I needed to understand BEFORE an arrest if my loved-one would want CPR - and that once involved in planning ahead, a doctor 'tells' emergency clinicians what would be in my loved-one's best interests (it should be that together I and the doctor 'tell' emergency clinicians what is in my loved-one's best interests). And I have put quotes around 'tells' for good reason!

It is outrageous, that NHS guidance and protocols do not sufficiently emphasise the differences between hospital, where a patient is surrounded by doctors and nurses who often rely on written records and where relatives are visitors, and home, where a patient is living with relatives/friends and when people talk to each other, and where clinicians are the visitors. Somehow, what works for hospital, is often 'imposed on' home - where it simply DOES NOT WORK!

It is outrageous, that almost everyone I talk to who is part of the 'MCA World' comments that over a decade since the MCA became law, training about the MCA (except perhaps for DoLS and its replacement) for doctors, nurses and other professionals is 'minimal'. Note that I said MCA training - not MHA training.

It is outlandish, that the almost complete lack of thinking time for cardiopulmonary arrest at home, is not adequately considered. Even during the most brief of court rulings concerning CPR, a judge has the luxury of incomparably more thinking time, than a paramedic who arrives and finds a person in arrest has available.

It is outrageous, that better reconciliation of different perspectives has not been achieved. I cannot believe any person ever said to a relative 'I don't want anyone to attempt CPR - well, I don't mind if they do it for 20 seconds provided they then stop'. It would be rather like saying 'I don't want to be punched in the face - well, perhaps just a couple of punches would be okay'. So as a relative, I can know my loved-one does not want CPR: not 'is happy for it to be started then stopped'. Does not want CPR started. Paramedics - understandably - find it reasonable to argue 'we should start CPR, while we are being persuaded that CPR is not appropriate'. Sorting that one out, is really problematic.

Etc.

Hi Liz,

Thanks for your comment - yes, incredibly 'thorny'!

As my latest post points out.

I am now in the rather privileged position of being able to discuss this stuff, with various of the people who actually create guidance for clinicians - and I like (although the word 'decisions' is of course not quite right) what you wrote:

In my case my mother and I have discussed the form and attached a note signed by us both that says we agree with the decisions outlined.

As a DNACPR or a respect document are not legally binding but a Power of Attorney for health and welfare is also an ADRT only if written post to the POA are there will always be this dilemma.
Until such time as a DNACPR in which ever format is a illegally binding document there will always be controversy, rather than it being advisory for ELOC.

Scenario 1
A person has a respect or DNACPR in place. They are not deemed to be end of life care with their Alzheimer's. Sitting at the dining table they choke. Can staff or relatives if unable to dislodge the object with back blows and abdominal thrusts able to perform CPR as outlined in the resus councils protocols?

This situation happened a few weeks ago and the person is now back at home and living life to the full

Scenario 2
Person in a care home with a respect form and DNACPR signed. On the respect form says do not take to hospital for ELOC. Person is having a stroke, the care home calls for an ambulance can they take them to the stroke specialists for treatment? The home manager refuses the ambulance service to take the person to hospital. 3 days later they pass away.
The family had spoken to the paramedics and said take them for treatment but the manager refused.

Outcome was family thanked ambulance service but were very unhappy with care home manager who has now left that home and not to another managerial position.

Hi Ann, I like your questions. I might try and get some 'answers' via Twitter (unless you object).

These are the sort of 'real world questions' which so far as I can see, usually are not present in MCA training:

https://www.bmj.com/content/350/bmj.h3181/rr-2

My thoughts on Ann's first scenario: if the person is living and enjoying life, CPR would be correct in that scenario: I cannot see how a DNACPR decision could be made or in place [unless while capacitous the person had created an ADRT refusing CPR - and even then, it is not entirely simple]. The second one - well, I don't think 'do not take to hospital' should be on a ReSPECT form. Whereas 'I want to die at home' should be on the form, if the person has that objective. The problem with a stroke - unlike for CPR - is that it is not necessarily clear if the stroke will be quickly fatal if left untreated. So my feeling, is the person should probably have been taken to the hospital - and definitely if at the time, the family were telling the paramedics to take the person into hospital for investigation of the stroke's likely consequences.

Some researchers at the University of Warwick, have investigated the use and effects of ‘ReSPECT’, and videos summarising their findings can be found at:

https://warwick.ac.uk/fac/sci/med/research/ctu/trials/respect/results/event/

There are two interesting sentences, in the video by Professors Slowther and Griffiths. This sentence (I’ll call this sentence no 1) is spoken:

‘Knowing the patient’s wishes also made relatives feel more confident in situations where they were required to share information on the patient’s behalf’

That is a rather striking sentence (for example – ‘required to’?) and I analyse it, and a second sentence which also appears in the same video, in the PDF.

Alex Ruck-Keene, has allowed two lawyers, Richard Charlton and Bharati Gidoomal, to post a guest blog titled 'Guest post – the risks of ReSPECT' on his website:

https://www.mentalcapacitylawandpolicy.org.uk/guest-post-the-risks-of-respect/

Charlton and Gidoomal tell us:

'Unfortunately, our access to records in care and nursing homes, and to hospital records in our representation of clients in the Court of Protection proceedings has demonstrated that this form (the ReSPECT form) also creates the possibility for the same abuse as the DNACPR form (Do Not Attempt Cardiopulmonary Resuscitation), with unfortunately even wider application. This is because ReSPECT forms cover all forms of treatment not just DNACPR.'

They finish their blog with this:

'...relatives, friends, and professionals should ensure that any ReSPECT form that exists, especially for a resident in a care home, nursing home or in a hospital, is properly created. We do not know how many other unlawful ReSPECT forms are out there which could have potentially tragic consequences.'.

Charlton and Gidoomal are describing ReSPECT forms which are completed unacceptably, whereas I object to fundamental aspects of the form, notably whose signatures are on the form, who completes which sections, and in general I object to the way that 'the form is controlled by the clinicians, and doesn't truly represent the involvement of family-carers, legal proxies, etc'. I don't know if Charlton and Gidoomal believe that the nature of the form, creates some of the problems they describe: but it would certainly make it easier for 'relatives, friends, ... [to] ensure that any ReSPECT form that exists, especially for a resident in a care home, nursing home or in a hospital, is properly created.' if the form was redesigned as I've suggested, to bear the signatures of many non-clinicians.

I'm not 100% sure, if Charlton and Gidoomal would prefer a separate form for CPR/DNACPR as I would - and I have recently proposed a fundamental change to 'DNACPR forms' in my piece at:

https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/Mikes-Cheeky-Blog-a-proposal-for-a-different-type-of-DNACPR-document./1142/