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

14/02/17 - 10:47
mike stone
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.

Reply

I think this is also about choice. My husband and I have had long discussions about what would happen should one another be on life support. I would want to go into the ground straight away, as I have been a banker for nearly 30 years, and I know what costs are involved. Plus, use my organs to save someone else. My husband however battles with this, as he was in the army, and was scarred seeing death around him. He would therefore save a life than terminate one. So if he goes on life support, I have warned him, I will switch the machines off, as I will not go through the trauma of watching him.
He again, wont switch the machines off for me..............its a choice thing. If he wants to stare at me until I'm 103, that's up to him.
Hi Sally Ann

Unfortunately I think without a Lasting Power of Attorney (Health and Social), different from a financial one it will not be your choice, it will be the choice of the clinical practioner in charge of your husbands care. ADRT will be respected by the medical profession if signed when the person has capacity as will a DNACPR. It is so important to put in place the wishes of the person and an Advanced Lasting Power of Attorney whilst they have capacity. Otherwise its the professional clinicians ultimate choice or the court appointed person.

A verbal statement described by Mike passed on by a family member carries no legal weight so the paramedics will attempt resuscitation. 'my dad made it clear to me yesterday evening, that if he had a cardiopulmonary arrest he wants to be left alone to die', should read 'my dad made it clear to me , that if he had a cardiopulmonary arrest he wants to be left alone to die and I have a LPA (Health and Social) or a DNACPR, ADRT etc to that affect".

It is so vital to discuss this with your health care professional, GP or solicitor whichever is appropriate. Get that LPA in place.
Hi Sally-Ann and Keith,

Keith is almost correct about the behaviour of clinicians. 999 Paramedics do not always respect a written ADRT even it appears to be both valid and applicable, and as a consequence your best bet is to do two things:

First, appoint someone as your 'welfare attorney' under the LPA, and give them unrestricted powers over healthcare decisions;

Second, create one or more written Advance Decisions (ADRTs) which forbid any treatments you definitely do not want should you lose mental capacity.

It is important for legal reasons to do it that way round (appoint the attorney first, then create the ADRT(s)). And it is important to appoint the attorney, because, as I've said, sometimes clinicians will argue that the ADRT is not applicable: in which case, your welfare attorney (with whom you have discussed and explained your ADRT) then says 'my best-interests decision is that [the treatment your ADRT refused] should be withheld' to the clinicians.

Even those two attempts to get clinicians to follow your decision might not work - it might still end up in court - but in reality, as Keith stresses, a welfare attorney is often more effective than an ADRT (which is perverse - legally, the ADRT ranks above the decision expressed by an attorney).

Quick note to Keith: my point is that what my dad made clear to me, is surely 'legally binding' on me - which is where it then starts to get very complex !
I still can't think and type at the same time - should have said:

999 Paramedics do not always respect a written ADRT even [if] it appears to be both valid and applicable
Hi Mike,

I responded to this blog a few days ago. My response was the first one and then it was followed by another from a second person. Neither is in evidence. Can you please advise?

Thanks,

Suzie Lloyd
Hi Mike,

I responded to this blog a few days ago. My response was the first one and then it was followed by another from a second person. Neither is in evidence. Can you please advise?

Thanks,

Suzie Lloyd
Hi Suzie,

So far as I can see, the first response was from Sally-Ann Martin, and the second from Keith Comley - so I'm puzzled by where your response is ?

As for 'neither is evidence' - I can't suggest whether there is evidence for an answer, unless I understand what the question is: can you repeat your question please ?

'Evidence' is quite hard to come by, if it is the behaviour of clinicians [or indeed of relatives and family carers] which is involved (the studies tend to be either absent or very limited),

Mike
Oh not to worry. Been in care too long. Docs in place
Hi Mike,

I don't know how this could have disappeared but not to worry. What I meant by evidence is that neither my response nor the response from the second person is in evidence, i.e., they are not there anymore.

Suzie
Hi Suzie,

Are you sure you posted in this thread ? I wasn't aware of posts disappearing on DIC, but they might - Nursing Times had a very bad habit of removing comments, without leaving a 'place marker' saying a comment had been removed. If DIC removes a post, it should replace it with a 'comment removed' label - otherwise it can get very confusing indeed (people can be commenting on things which are no longer in the discussion chain - very unhelpful when you try to make sense of the discussion).
Hi Mike,

I definitely saw it up there along with the second person's response and there would be no grounds for any entity's removal thereof. But these things happen.

Thanks,

Suzie

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