Mike's Cheeky Blog: ECTP/'ReSPECT' does not seem very respectful to me !

There is currently some work going on, for something which was originally called an Emergency Care and Treatment Plan (ECTP) and has now been renamed ReSPECT. The work can be found if you look on the website of the Resuscitation Council UK - the RC(UK). I dislike ReSPECT for some fundamental reasons: I've recently been e-mailing a few people about my dislike of ReSPECT, and [not unusually] I am somewhat 'one against the system' on this.

The objective of ECTP/ReSPECT has been explained as:

'The ECTP Working Group was established in February 2015 to work collaboratively and build on major work already undertaken to develop a national form to record anticipatory decisions about CPR and other life-sustaining treatment, and to guide decision-making in an emergency situation in which the person lacks capacity.'

The original intention was to attempt to develop a single 'national form' which could be used for all patients and in all settings - that in my opinion is too ambitious, and not achievable, if the 'guide to decision-making' is anything other than an Advance Decision. Put another way, while an ADRT is a simple document, which should indeed apply in all care settings, any document which seeks to guide 'best-interests decision-making' is hugely more complex, and very challenging to design. So

POINT 1 We should be promoting Advance Decisions, and not promoting any record which merely contributes to best-interests decision-making, as our starting point.

There is a list of FAQs about cardiopulmonary resuscitation (CPR) on the RC(UK) website, and it quite correctly points out this:

'A DNACPR decision is made and recorded to guide the decisions and actions of those present should the person suffer cardiac arrest, but is not a legally binding document.

An ADRT (as defined in the Mental Capacity Act 2005 - England & Wales) is a legally binding document that the person has drawn up (when they had capacity to make decisions) and in which they have stipulated certain treatments that they would not wish to receive, and the circumstances in which those decisions would apply. Where a properly drawn-up ADRT refuses CPR (despite acknowledging that their life would be at risk) a healthcare professional who attempts CPR on that person in full knowledge of the valid ADRT would be at risk of a charge of battery.'

An ADRT does not in fact have to mention circumstances in which it is to apply (too 'nerdy' to explain here - but if you want to check that, read section 25(4) of the MCA and think about 25(4)(b) and 25(4)(c)), but the basic point is that the ADRT forbidding CPR is legally-binding: and this is because the patient made the decision, and the patient signs the ADRT. The RC(UK)'s idea of a 'DNACPR decision form' and also the ReSPECT form, do NOT contain the patient's signature - so they CANNOT BE 'legally binding'. One of the people involved with ReSPECT recently included this in an e-mail to me:

'We cannot change the law and it is a fact that an ADRT is the only advance decision that is a "legal document" because it sits within a legislative framework, as you know, but that is only in England and Wales. A DNACPR form or a ReSPECT form cannot therefore be a legal document any more than any clinical record is a legal document however much we might or might not want that to be different.'

Well, the fact that there are different laws in England and Scotland, is a sound reason to have NOT attempted to design A SINGLE ReSPECT FORM which 'works' in both countries: but, it was A DECISION ReSPECT MADE to prevent patients, welfare attorneys, relatives, etc from signing the ReSPECT form - it is that decision [preventing the patient from signing the form], and not the law, which prevents a ReSPECT form from being a legally-binding document in England.

If - and RC(UK)/ReSPECT accepts this - only a patient's decision when recorded in the form of an ADRT forbidding CPR is legally-binding, then NOT ALLOWING THE PATIENT TO MAKE THE ReSPECT FORM INTO AN ADRT IS NOT RESPECTFUL OF THE PATIENT'S DECISION-MAKING AUTONOMY.

This (in the RC(UK)'s FAQs about CPR) is not very respectful of patient autonomy either - being respectful here, would involve training healthcare staff to understand and respect ADRTs which forbid CPR, as opposed to telling patients to convert a legally-binding ADRT into a non-legally-binding DNACPR form:

'If you want to record this in a legally binding document you should plan to make an ADRT, but it is often best to have it recorded on a CPR decision form as well, so that healthcare professionals will recognise it easily. Alternatively, you could simply ask your healthcare professionals to record your decision on a CPR decision form.'

The RC(UK)/ReSPECT, persist in claiming that family carers, or other relatives/friends, cannot make best-interests decisions about the provision or withholding of a potentially-successful (clinically) treatment - for example:

'If the person has lost capacity and the healthcare team has made a DNACPR decision for them, because CPR would not work or would not be in their best interests, the family should be consulted (unless before losing capacity the person stated that this should not happen). In other words, as a family member, you should be made aware of their condition, their chances of survival and plans for their treatment, including decisions about CPR. You may be able to help the healthcare team to make the best decision for the person, by explaining what you know about their beliefs and likely wishes. However, unless you have been given specific legal power (e.g. Power of Attorney) to make decisions about this type of treatment for them you are not entitled to make such decisions and should not be asked to do so.'

My e-mail correspondent wrote something similar:

'The clinician who attends the patient during the emergency situation is the one who takes responsibility for the treatment and care decisions at that time so whatever information can be provided to rapidly inform them about realistic patient preferences is going to be helpful.'

Both of these, assert that the clinician is the person who should make best-interests decisions about the treatment: I cannot find that inside the MCA, and best-interests decision-making is a replacement [during incapacity] for the consent/refusal which a capacitous patient gives - in the same way that consenting to or refusing an offered treatment does not require that the patient is a clinician, a best-interests decision-maker does not need to be a clinician.

Fundamentally, this sentence is wrong:

'... unless you have been given specific legal power (e.g. Power of Attorney) to make decisions about this type of treatment for them you are not entitled to make such decisions and should not be asked to do so'.

Correctly, it would say:

'... unless you have been given specific legal power (e.g. Power of Attorney) to make decisions about this type of treatment for them you are not entitled to make such decisions and to impose your decision on other people'.

The idea that a family carer who is not a welfare attorney is not required to make best-interests decisions, is at odds with the idea that the MCA applies to family carers, and it conflicts with 1(5) of the MCA:

1(5) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.

ReSPECT is instead promoting the making of best-interests decisions, in emergencies, by the wrong people - as I've just pointed out (modified a little, here) on an NMCF website:

'It is a combination of adequate multi-party discussion and information sharing WITHIN the group of people who are 'closely involved with the patient in an ONGOING WAY' which equips the individuals within that group to properly consider section 4 of the MCA - and nobody who is not involved in that ongoing way, is in a position to properly consider section 4.

Put another way, if we consider a family carer who summons a 999 paramedic to an 'emergency' situation, and we consider who is the better-equipped to make a best-interests decision, the situation is this. There is an ongoing 'wider situation' involving the patient, which the family carer probably has a detailed understanding of, and a specific clinical event which caused the 'emergency'. My position is that it is relatively easy for a 999 paramedic to describe the current clinical situation to the family carer, and for the family carer to then add that information to the carer's existing 'holistic understanding of the overall situation'. Which means the family carer, might be able to make a properly-considered best-interests decision. Some people - notably the RC(UK) and its ECTP/ReSPECT work - seem to think that during an emergency, the family carer can somehow properly impart that 'holistic understanding' to the paramedic, and that the paramedic can then make a properly-considered best-interests decision: I see this idea that the paramedic can be better-informed than the family carer, and that the paramedic's decision could somehow be as properly-considered as the decision of a [calm] family carer would be, as utterly absurd.'

THE IDEA IS DISRESPECTFUL TO LOGIC !

The RC(UK)/ReSPECT also seems to want clinicians such as 999 paramedics to defer to whatever is written within the records, instead of asking the family carer who called them 'how can we help - what should we be doing'.

The more I read clinically-authored material about EoL, the more I wonder 'have these people been a family carer at the end-of-life of one of their own loved-ones ?'. I ask because I was a family carer when both of my own parents were dying. And I felt a very strong and compelling desire to 'do what my parent wanted' - in other words, not to make decisions, but to follow their decisions. That amounts to 'get advance decisions' - the ReSPECT approach doesn't stress this objective of getting the patient to make the decisions if at all possible.

Returning to what my e-mail correspondent wrote, and a little bit of analysis of it:

'The clinician who attends the patient during the emergency situation is the one who takes responsibility for the treatment and care decisions at that time so whatever information can be provided to rapidly inform them about realistic patient preferences is going to be helpful.'

That ASSUMES there WILL BE a clinician summoned to an 'emergency'.

The law - both in England and Scotland - starts by confirming that patients have the right to forbid interventions. If my terminally-diagnosed father explains to me one evening that he definitely would not want anybody to attempt CPR if he has a CPA, then 'I KNOW'.If my dad then arrests before he has told a GP or any other clinician, then his decision will not be within ReSPECT or any other 'clinical records' - BUT, I STILL KNOW HE HAS FORBIDDEN ATTEMPTED CPR. In this situation, as a family carer or relative I probably am not sure if he has arrested, or collapsed for some other reason. I am aware - most relatives might not be - that if I call 999 to discover if my dad is in CPA, and tell 999 paramedics 'my dad made it clear to me yesterday evening, that if he had a cardiopulmonary arrest he wants to be left alone to die', the paramedics are very likely to attempt CPR if he is in CPA.

So, I need to decide whether to call 999: do I call 999, and take the very real risk that 999 will not respect my dad's decision that he didn't want CPR - or, do I wait and see if he dies, and risk that if he is having something such as a non-fatal stroke, he will live-on with clinical damage which prompt(er) treatment might have made less intrusive on the rest of his life ?

IT IS DISRESPECTFUL OF MY DAD'S AUTONOMY, AND DISRESPECTFUL OF MY POSITION AS A FAMILY CARER, IF 999 PARAMEDICS DEFAULT TO DISBELIEVING FAMILY CARERS.

I was sent a link to a rather good short video in January, by someone I discuss the MCA with:

Have you seen this by the way - I like the way it stresses the collaborative nature of best interests -

https://www.brownejacobson.com/Health/training-and-resources/60-second-brief/2016/09/collaborative-decision-making-and-the-role-of-the-next-of-kin

Well, good end-of-life care, and good decision-making during EoL, clearly require 'a collaborative attitude': but, a collaborative attitude starts from 'there is a decision which needs to be made, we all need to discuss things and then see if we all agree about the best decision' - it should NOT start from 'the heathcare professionals will talk to the family carers, and then the healthcare professionals will make the decision'.

That is enough for now - I can always add to this, as and when.

PS My capitals should not be taken as 'shouting' - in my writing elsewhere I would have made those bits of text bold for emphasis, but I cannot use bold here, so I use capitals instead.

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