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

mike stone 04/09/17 Dignity Champions forum

NOTE: second attempt to post this - seemed to 'freeze up' when I just tried to post it.

I'll be sending the PDF to Alan Eccles, the Public Guardian for the Mental Capacity Act, later today: no need to go into details, you can read the PDF. But in brief - any recommendations on a ReSPECT form which are made on 'best-interests grounds' should not be 'signed off' by the senior clinician.

The form does that - only has clinical signatures on it - which seems to me to indicate that those learned clinicians who developed ReSPECT, do not accept that the MCA has moved 'decision-making' to patients, people chosen by patients, and other lay people involved in caring for mentally-incapable patients, and that 'clinical paternalism is supposed to be dead now'.

Associated files and links:

Post a reply

Liz Taylor 12/09/17

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.


mike stone 25/09/17

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.

mike stone 26/09/17

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


mike stone 26/09/17

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

mike stone 06/10/17

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


mike stone 17/10/17

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


mike stone 16/11/17

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]

mike stone 21/12/17

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.

Associated files and links:

mike stone 11/01/18

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.

Associated files and links:

mike stone 08/02/18

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]

mike stone 08/02/18

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'.

mike stone 09/02/18

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]

mike stone 13/02/18

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,


mike stone 15/02/18

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.

Associated files and links:

mike stone 23/04/18

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?

Associated files and links:

mike stone 24/04/18

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'.

mike stone 24/09/18

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.