I've just posted this question a doctor sent to me on DiA Facebook - if this chap has arrested at home should the 999 paramedics attempt CPR ?

mike stone 20/04/17 Dignity Champions forum

I have just posted this question on the Dignity in Action Facebook page (about 3 hours ago), and as I've got some responses, I thought I'd try it here as well.

I sent an e-mail to a doctor who posts about cardiopulmonary resuscitation a few days ago, and yesterday he sent me a rushed but quite lengthy e-mail, and in it he asked me a question.

Would anyone like to contribute their own answers to this - if I get some, I'll pass them on. My own answer to this question [I'm not going to give it here - I do not wish to 'prejudice' any responses] is not the same as the guidance I keep reading.

Here is the question in the e-mail:

But I am going to ask you to consider a scenario. I am going to be quite binary, as you will have to make a quick judgement call pls! You are the ambulance man attending the following call: How would you manage it:

Scenario: Arrive at house after distress call. 72 yr old man, looks fit and well. Some cardiac history, takes tablets for arrhythmia, but not much other information. No pulse, not breathing, at present collapsed 18 minutes ago. No DNACPR form in house, but 3 family members firmly say "Don't give CPR".

Post a reply

Dal Morlar 20/04/17

Because I have no background information I should allow the 3 family members time to explain the situation but in the absence of a DNACPR form I'm concerned that I may lose my job if I don't act immediately so I will begin CPR. I'm not worried about the family members complaining at a later date because I was acting according to my training and judgment.

Suzie Lloyd 20/04/17

Difficult because the three people should be able to produce the DNACPR Certificate, however, they would not be expected to produce same if the collapsed person was in an other location such as a supermarket or in a bus queue....

mike stone 21/04/17

I have decided that these replies are likely to be useful as a learning or teaching resource, so they need to be in one place and open-access.

Therefore I plan to post the responses from the Dignioty in Action Facebook page in this thread, as I periodically harvest them.

These are the responses on DiA to date:

Nick Dando 9:47 yesterday

I would give cpr. In an emergency situation you don't have time for the discussion required, better to attempt to save life-

Nick Dando 9:58 yesterday

I misread the post and didn't see he had collapsed 18 minutes ago. I suspect that would change my answer

Rachel Louise Scurr 9:51 yesterday

My heart says let the man rest in peace and I would be happy to do that although I suspect the guidance is different.x

Amanda Vickerman 10:21 yesterday

I wouldn't, it's the 18 minutes, although how do we know that is accurate

Jacquie Moss 23 hours

Cpr should be given, he is a relatively young man and I would not hesitate

Sharon Symonds 23 hours

Accept the family decision as his advocates based on how long he has been down

Sharon Coley 22 hours

Give cpr, until the gentleman concerned can state his own wishes then the lack of a DNR should be an assumption that he wants to live, in regards to the families wishes again I would have to make the assumption that they may not have his best interests in mind x

Alison Parish 22 hours

No don't give it. Someone decided it was his time to go and he left without too much suffering hopefully. To bring him back who knows what torturous illnesses could be around the corner for him.
I spk as one who cared for mum until her passing of a dreadful disease with lots of pain and suffering. The grief is terrible remembering what she had to go through. Would have much rather her had a pain free end

Liz Taylor 21 hours

My heart says that given the amount of time he's been down, assuming that's accurate, then don't give it. That is a much more dignified way forward. However in the absence of a DNAR the ambulance personnel have no choice, they have to give CPR. Just goes to show the importance of having this discussion and making your wishes known in writing at an early point.

Jane Finnerty 13 hours

I do agree Liz. Hard for a loving family but easier if they know your wishes

Valerie Kenyon 21 hours

In the absence of the correct form which the patient would completed with his expressed wishes I would have to attempt CPR and explain my position to family .

Mike Stone 21 hours

Can I ask - is Valerie Kenyon a HCP: paramedic, nurse ?

Valerie Kenyon 18 hours

Why?

Mike Stone Just now

Because I'm interested to understand whether what the effect of 'professional training' is on how people respond to the scenario: obviously laypeople will not have been influenced by training, but HCPs probably will have been. I'm a layman - but I've been influenced by my experience when mu mum died at home, and by my reading of the MCA.

Mike Stone 21 hours

And I forgot to say - thanks for the responses so far. A better response rate than I had expected. I've just sent the responses so far, to the doctor who put the question to me.

Dudley Cil 19 hours

As there no written instruction, try cpr there is nothing to be lost. It is the 1st principle of medical ethics to preserve life. Unless rigger mortis has set in.

Rochelle Monte 16 hours

I am delivering CPR training tomorrow and I would advise staff to call 999 and commence CPR. As no advance directive in place . And would suggest to family that they need to have formal agreement in place with the gentleman's consent should he survive.

Sally Hastings 1 hr

I'd go ahead with CPR he's only 72. His family may have information but without a legal document it's elementary.

Mike Stone 1 hr

All being well, on Monday I will post the answer I sent to the doctor, and also the response he sent to my answer. After a little time for people to ponder those, I will post my version of a conversation between the man and his GP.

I will throw in a question now. People are talking about 'DNACPRs' and 'documentation'.

The term 'DNACPR' usually means a written document signed by the senior clinician (GP here) but NOT by the patient. An Advance Decision refusing CPR would be signed by the patient and witnessed (the witness can be anyone, when I read the MCA) so a written ADRT forbidding CPR could be produced by those 3 relatives even if there was no 'DNACPR', and no mention of the ADRT in the wider records.

Would people (999 paramedics, etc) react differently if the relatives showed them a written ADRT forbidding CPR, which was signed and witnessed but did not seem to be 'embedded in the wider records system', compared to finding a DNACPR in the medical notes [a DNACPR not bearing the patient's signature - just the GP's signature] ?

I also posted this same question in the Dignity in Care discussion forum yesterday at:

http://www.dignityincare.org.uk/Disc.../Discussion_forum/...

Two replies so far:

Dal Morlar
Because I have no background information I should allow the 3 family members time to explain the situation but in the absence of a DNACPR form I'm concerned that I may lose my job if I don't act immediately so I will begin CPR. I'm not worried about the family members complaining at a later date because I was acting according to my training and judgment.

Suzie Lloyd
Difficult because the three people should be able to produce the DNACPR Certificate, however, they would not be expected to produce same if the collapsed person was in an other location such as a supermarket or in a bus queue....

Sharon Symonds 1 hr

I requested paramedics ceased cpr when attending my father at home on the day of his hospital discharge. I had no advanced directive available but they did not question my decision and stopped, explaining that they have to commence cpr when attending . I was grateful they were responsive to my request as couldn't imagine my father having to suffer any more than he had already
A work colleagues father was taken to hospital following cpr as he had a faint trace and then 'hung' on for a few days before dying again.

Mike Stone 48 minutes

The doctor who sent me the question, sent this back to me when I sent these DiA responses to him yesterday afternoon - I only opened this e-mail to me after my previous post (which answers one of his questions [about 'the son' - wait until Monday !] - and as you can tell, both of us are grateful for the contributions people are making:

Wow, thanks Mike. I'm sorry I have so little time with email and I have only been able to skim your previous ones. But the responses from your fellow DiA users are very enlightening. Some replicate the answers I receive at my teaching sessions.
Have you 'fed' them the next call yet? (from the angry son)

Sally Hastings 31 minutes

Gonna change my mind having reread Mikes original post. 18 mins is a long time. Thought it read 8 mins. My mistake! Would not give CPR

Sally AJ Boyle Thompson 15 minutes

This is very interesting. Especially reading everyone's responses.

Mike Stone Just now

'Responses' are usually more informative than either the question (but a good question, will lead to better responses) or the original article: the comments to British Medical Journal articles are very often 'a much better read' than the original article.

CURRENT TIME IS 10:44 on Friday 21 April

James Dunn 22/04/17

The Abul. Control should have the DNR order/ Tep registered on their data base by the GP if the GP has done their job correctly . This is also the same if the Hospital has carried out the completion of the order.the new orders are hospital/ community transferable that float with the patient.

kevin SLATER 22/04/17

In these situations there is never going to be a clean decision without a directive from the individual, medical staff are often damned if they do and damned if they dont now even more driven by litigation.
Families are often the least able people to make these decisions for many reasons some often distasteful, if a family member is close to the individual then they should have knowledge of what the person wants and has decided on making the appropriate wishes valid by documentation, we do not like talkind about what if this happens? but most people do at some time, it is time for the individual to be more pro active about what their wishes are should they experience critical illness, In the scenario presented one would imagine that the person was already clinically dead and surely when the family called 999 they would have been advised to administer CPR,

mike stone 22/04/17

Hi Kevin,

I joined Twitter on Friday. Put a question to Dr Gordon Caldwell and got this answer to it:

Dr Gordon Caldwell? @doctorcaldwell 23h23 hours ago
More
Replying to @MikeStone_EoL
Best current advice would be Don't phone if you don't want someone to do #CPR Until some wisdom comes back for Care of the Dying

I can't find the tweet with the question I asked him - I think I asked him about my closing scenario in my piece at:

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

The 'question' is in the scenario:

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 ?

mike stone 22/04/17

Harvesting contemporaneously from DiA:

Mike Stone 3 hrs

I have decided to collect all of the replies to this question together in the Dignity in Care forum piece at:

http://www.dignityincare.org.uk/Disc.../Discussion_forum/...

Anybody can read the thread on DiC (you can only comment in DiC if you have joined, but anybody can view the discussions) and I know I will always be able to find the DiC discussion by using that web-link above: I still don't understand how you keep track of discussions on Facebook.

I do think this question from the doctor [which is very similar to questions I keep asking - don't get answers, but I keep asking] is a VERY IMPORTANT one.

I joined Twitter yesterday, at the suggestion of a doctor: I am not entirely sure how useful Twitter is for complex discussions (although I am 'already cheating' - effectively posing much longer initial questions than should fit within a 140-word tweet [hint: an image is not necessarily a photograph]).

My Twitter username is @MikeStone_EoL as I understand it (could be wrong)

I've also borrowed a book, to try and figure out how to use Twitter - 'borrowed a book' shows my age !

Sally Hastings 2 hrs

I've been on twitter since it's conception and only posted a few tweets. Not sure about the "trolling" side of it. So be prepared for a few challenges about your views.

Mike Stone Just now

Hi Sally - yes, my first thought was that Twitter will be deeply confusing for me (and it is) and full of 'shouty people'. However, I put a question to Dr Gordon Caldwell yesterday - I can't find my tweet to him, but I think I asked him about the scenario I put at the end of my piece at:

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

It is not exactly identical to the scenario the doctor sent to me, which is being discussed in this thread - but, there is truth in this tweet from Dr Caldwell

Dr Gordon Caldwell? @doctorcaldwell 23h23 hours ago
More
Replying to @MikeStone_EoL
Best current advice would be Don't phone if you don't want someone to do #CPR Until some wisdom comes back for Care of the Dying


Sally-Ann Martin 23/04/17

Religious beliefs have to be considered like Jehovah Witnesses etc..I don't have DNACPR lying around at home.....where did the HUman Rights Act go now just because of someone nervous about their job? I also have rights, I also have beliefs, and if I don't want resuscitation and blood donations, that must be taken into consideration.

mike stone 24/04/17

I have just added the answer I sent to the doctor, and also his reply to it, to the Dignity in Action Facebook thread - here it is

Mike Stone 26 minutes

This is the answer I sent to the doctor:

In your scenario, ignoring that the paramedic would currently be influenced by his protocols which say something different, then in my opinion what should happen is:

The paramedic asks these 3 family members 'are you telling me that you don't think I should attempt to resuscitate him - or are you telling me that you are convinced, from what he has said to you, that if he were able to, he would tell me to not attempt CPR ?'

If the latter, the paramedic should not attempt CPR in my view: if the former, the paramedic should attempt CPR, I think. Even if only one of the three says 'I know he would want CPR', CPR should be attempted. But - one of my issues - any family carer who is convinced that the person would have refused CPR, should not call 999 if the carer is aware that 999 would attempt CPR.

Professionals, seem to have decided that 'while a decision as respects any relevant issue is sought from the court' in 6(7) is somehow 'optional' in an 'emergency''.

I think that is dangerous for paramedics:

http://www.bmj.com/content/352/bmj.i26/rr-2

All for now, best wishes, Mike

PS 18 minutes with no circulation - which is possibly the case in your scenario - would probably lead a rational 72 yr-old to say 'I wouldn't want CPR attempted': if the person had thought about it. Which introduces issues around both 'rational' and 'thought about it' !

The doctor came back with:

Yes, I thought you might bring up the rationale for actually initially making the call in the first place. Truth is, many people panic and just don't know what to do, so they call 999 (even when DNACPR in house).

Often the best people to call if DNACPR is there already, is the GP surgery if in-hours or the out-of-hours service, although their response can vary too.

However, this was a scenario with no DNACPR. I ask my students to then reflect on the following scenario: an irate son who was not at the house phones up and tells the GP surgery that his father was in fact on the waiting list for an implantable defibrillator device; his cardiac arrhythmia was on occasion life-threatening, and so his father had wanted such a device to give him an emergency jolt if he went into Ventricular Fibrillation or pulseless VT. Defibrillation forms part of standard CPR, so why was his father denied this? How dare the paramedic listen to what auntie Mabel, auntie Dottie, and nephew Jamie had said at the scene?

I've exaggerated this a bit, but this is a scenario we often role out. It can be a career ending phone-call for a paramedic.

How would you deal with this son?

Liz Taylor 24/04/17

HI Mike

Just to add to the debate, I picked up from the Nursing Times that a nurse was given a 24month caution after failing to give CPR to a care home patient 'who was almost cold' when she arrived on the scene. I think this just adds to the debate in that there is a clear expectation that professionals will give CPR unless there is a clear written instruction otherwise. It is unclear to me whether this needs to be am advance directive and/or a DNACPR. My guess is that it will come down to case law, and in the meantime how many 'mistakes' and 'actions' will continue that result in people not receiving the dignified support and indeed death that they had hoped for.

Sally-Ann Martin 24/04/17

We mustn't confuse residential and nursing home patients, (like the nurse who got the caution), with patients AT home. The English language differs here.
Almost all "homes" have a file on their residents stating what their best wishes and interests are, plus they usually state what their end of life decisions are.
People "at home" don't have files that contain data of this nature, but this doesn't mean their wishes and interests must be ignored. It might be in a will and last testament, a signed piece of paper, etc.

mike stone 25/04/17

Hi Liz,

That NMC warning is something I asked about on Twitter yesterday - I wasn't aware of the case, and someone pointed at a subsequent statement which made sense, but I couldn't from that work out where the 'furore' was coming from.

Hi sally-Ann,

End-of-life patients who are in their own homes, will have 'files'. And you can create your own 'file' - you can decide to create a written ADRT forbidding CPR. The trouble is - currently discussing this on Twitter (a platform which I'm still struggling to get tog rips with - only joined last Friday, and I don't have a mobile phone) - that the 999 services typically ignore a written ADRT forbidding CPR [which carries legal authority] unless they can find a DNACPR form signed by a GP/doctor [and that does not carry genuine legal authority]. Remember that capacitous patients can make and change their decisions AT ANY TIME.

'Perverse' isn't the word for this - the NHS 'as a system' is not respectful of patient autonomy, and that has to change.

mike stone 25/04/17

I might be losing track a bit, but I think the most recent replies from DiA not already moved over here are:

Maggie Blackmore 23 April at 18:10

18 "minutes is a long time but should not Medical ethics be followed up

Rochelle Monte yesterday at 10:17

I found this a good question to pose when delivering training, we wait in anticipation for the next installment

Nobody seems to have commented on my most recent addition yet - the 'irrate son' question posed by the doctor.

I hope people do comment - it is at that stage of the analysis (what the 999 paramedics do, and what happens next) when this discussion gets really interesting and informative.

Kirsty Jones 25/04/17

Well we all know that the outcome wouldn't be good if indeed 18 mins had elapsed but we don't know that for sure so in the absence of a DNAR we should try

mike stone 25/04/17

Hi Kirsty,

I will be posting - perhaps Thursday or Friday - a conversation the man and his GP had, when he decided to go on the waiting list for an implantable defibrillator device.

Neil Purcell 25/04/17

This situation has to be all about documentation ,had clients in past with none and ambulance crews and social services care managers unless provided with documents can not pursue situation.
A lesson for us all I think .

mike stone 26/04/17

Hi Neil.

'A lesson for us all I think'

In my view more a case of:

'A conversation and debate about [mainly professional - it is 'understanding' that needs to be improved on the user side] behaviour, which we all need to have'

Emma Hildrew 26/04/17

The question of if the paramedic should start CPR depends upon the indivividual Ambulance Trusts Resuscitation Policy. I do understand that people have their own views on what is "morally right" but when faced with making a split second decision registered professionals must follow the policies that are set. It is not that people are nervous about their jobs it is more that registered professionals are bound by their registration body to follow these policies.


mike stone 27/04/17

I've just posted a tweet at https://twitter.com/MikeStone_EoL/status/857567980850479104
with a 'JPG' in it, that is actually a conversion from a PDF write-up of a survey I carried out a few years back. If you save the image and then open it at 1:1 viewing in an image-reader/editor, you should be able to read what I asked and what people answered (annoying, but I cannot attach PDFs either here or on Twitter - you used to be able to do it here, but no longer). The questions, and the answers, are relevant to the discussion we are having here.

mike stone 27/04/17

It looks as if Twitter has shrunken my JPG and it isn't readable - annoying! I'm still finding my way around Twitter.

Sally-Ann Martin 27/04/17

I have just had an incident where I had to run to a room and give CPR, but I could feel the skin was cold. Not only that, when the paramedics arrived, there was a single line on the monitor. THey honestly brought him back to life, by breaking his ribs, sawing into the leg for something, and they got a pulse. I steered the woman into the lounge, so that she didn't see all this.
They went to hospital, and he "died" 4 times on the way there. Another 4 times he was resuscitated. At the hospital, the doctor just walked up to the wife and asked what her wishes were, and she said, "let him die". That was it then, they allowed my resident to die peacefully. no more jerks and thumps on the body.
Why is it in CARE that the rules of engagement are so different? Why couldn't I have asked the wife exactly the same question?
THis man had choked on his vomit, had a heart attack, suffered a stroke a while back, and yet, I still had to perform CPR! His body had had enough, and only his wife could see this....................
Where was this guys dignity?

mike stone 28/04/17

On Facebook DiA from Stephen Allen 24 April 10:18

My 5 cents worth is to attempt CPR. If you bring him back you can confirm DNACPR and advice control for next time. If you don't, well you followed protocol as no DNACPR paperwork was available and you can hold your professional head high. (I am presuming the issue is on this side of the pond.)

MOVING ON - I am about to add this to the DiA discussion.

I will now add the conversation the man had with his GP, after posting [again] what the doctor who posed the question to me, sent back after I had sent him my answer to 'what should the paramedic do ?'.

The doctor came back with:

Yes, I thought you might bring up the rationale for actually initially making the call in the first place. Truth is, many people panic and just don't know what to do, so they call 999 (even when DNACPR in house).

Often the best people to call if DNACPR is there already, is the GP surgery if in-hours or the out-of-hours service, although their response can vary too.

However, this was a scenario with no DNACPR. I ask my students to then reflect on the following scenario: an irate son who was not at the house phones up and tells the GP surgery that his father was in fact on the waiting list for an implantable defibrillator device; his cardiac arrhythmia was on occasion life-threatening, and so his father had wanted such a device to give him an emergency jolt if he went into Ventricular Fibrillation or pulseless VT. Defibrillation forms part of standard CPR, so why was his father denied this? How dare the paramedic listen to what auntie Mabel, auntie Dottie, and nephew Jamie had said at the scene?

I've exaggerated this a bit, but this is a scenario we often role out. It can be a career ending phone-call for a paramedic.

How would you deal with this son?

This is the conversation the man had with his GP when his arrhythmia problem was originally diagnosed, as recounted later (I have added this in to the doctor's scenario myself) - i.e. after the irate son's phone call which I'm going to decide the son made to the Ambulance Service, NOT to the GP. So this is what the GP, tells either the AS, or the coroner, or the son:

'He told me that he wanted the implantable defibrillator device, because he wanted any fibrillation to be corrected as soon as it developed, to prevent it causing any clinical damage. In essence, he told me that he wanted to either 'healthy and alive' or else 'dead and out of it' - what he definitely didn't want, was to be alive but severely damaged.

He said to me 'if the device works, presumably it would stop me from being damaged. But if it fails to work, then if my circulation had been 'stopped' - not supplying blood and oxygen to my brain - for more than 2 or 3 minutes, I would want to be left alone to die. How do I arrange for 999 paramedics to only attempt to re-start my heart, if it has not been stopped for more than 3 minutes ?'.

I told him that the position was perfectly reasonable - but that in all honesty, I had no confidence that he could do that in view of my understanding of how the 999 Services behave'.

mike stone 28/04/17

Good question Sally-Ann.

Sometime next week, I'll be 'analysing this thread' and I will be answering your question [it isn't a difference in the rules re 'care' or 'treatment' - the problem is the different behaviour when a senior doctor is present, and when a senior doctor is absent: and the 'difference' is deeply disturbing and also deeply wrong!].

Keith Comley 01/05/17

The law is simple yes unless there is a valid instruction in place signed by the patient (If capacity), or a doctor, or a person with a valid LPA Health and Social Care or a court appointed person.

Another case is Rigor, Decapitation or Decomposition is present

Finally a Clinician pronounces death

mike stone 02/05/17

Hi Keith,

I also see the law as 'simple' - but the way 'the system/the professionals' interpret and apply the law is problematic and not at all 'simple':

'The law is simple yes unless there is a valid instruction in place signed by the patient (If capacity), or a doctor, or a person with a valid LPA Health and Social Care or a court appointed person.'

By the way, if by 'a court appointed person' you mean a Court Deputy in England, a CD legally cannot 'give a DNACPR best-interests instruction'. And neither - in fact - can a doctor.

Emma Hildrew 02/05/17

If I could just address this part of the thread.

This is the conversation the man had with his GP when his arrhythmia problem was originally diagnosed, as recounted later (I have added this in to the doctor's scenario myself) - i.e. after the irate son's phone call which I'm going to decide the son made to the Ambulance Service, NOT to the GP. So this is what the GP, tells either the AS, or the coroner, or the son:

'He told me that he wanted the implantable defibrillator device, because he wanted any fibrillation to be corrected as soon as it developed, to prevent it causing any clinical damage. In essence, he told me that he wanted to either 'healthy and alive' or else 'dead and out of it' - what he definitely didn't want, was to be alive but severely damaged.

He said to me 'if the device works, presumably it would stop me from being damaged. But if it fails to work, then if my circulation had been 'stopped' - not supplying blood and oxygen to my brain - for more than 2 or 3 minutes, I would want to be left alone to die. How do I arrange for 999 paramedics to only attempt to re-start my heart, if it has not been stopped for more than 3 minutes ?'.

I told him that the position was perfectly reasonable - but that in all honesty, I had no confidence that he could do that in view of my understanding of how the 999 Services behave'.

When the 72 year old chap has this conversation with his GP the chap should be told he should compete an ADRT. - Stating that if he has had absent pulse or respiration for over 3 minutes then he doesn't want the emergency services to commence CPR. If the ADRT is signed and witnessed and contains declaration that your decisions apply, 'even if my life is at risk' by refusing a treatment that may be life sustaining

There is an excellent resource on ADRT on this website, which I would recommend reading.
https://www.mndassociation.org/wp-content/uploads/2015/07/14a-advance-decision-to-refuse-treatment.pdf

This scenario shows that the GP is giving invalid information the the 72 year old chap. The reality is that the GP would have told the chap about his options, DNACPR ADRT.


mike stone 02/05/17

Hi Emma,

I'm afraid it isn't that simple.

Should the 72 year old be able to forbid CPR if he has been in arrest for more than 3 minutes, by means of a written ADRT? - absolutely, 100% he should.

Can he? - different question.

There is every reason to believe that his death could not be certified by the GP, even if the GP turned out post-mortem: and 999 paramedics are quite likely to attempt CPR if the death could not be certified.

Also, in principle the paramedics would need to ask the family 'when did he seem to arrest?' and that is one of the issues - the 999 Services not 'defaulting to believing what relatives tell them'.

As for a 'DNACPR form' - I don't think that is an option here, so it would have to be an ADRT.

See 'Alan and Liz' - my Alan and Liz scenario can be found at (where it is a little way in, as 'QUESTION 1'):

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=767&forumID=45


mike stone 02/05/17

I'll post my analysis of these comments, probably either tomorrow or Thursday. Before I do that, can I point readers at a few Tweets I've posted today:

https://twitter.com/MikeStone_EoL/status/859321283506556933

https://twitter.com/MikeStone_EoL/status/859322244773949440

https://twitter.com/MikeStone_EoL/status/859319584465326081


Emma Hildrew 03/05/17

Hi Mike,

Great post but I must disagree when you say "can he - different question" simply he can and because of the specific nature of his assertion that "But if it fails to work, then if my circulation had been 'stopped' - not supplying blood and oxygen to my brain - for more than 2 or 3 minutes, I would want to be left alone to die." This is an unambiguous statement. As long as the ADRT is valid then this man will get the death he wants.

I am a little confused by you saying that paramedic would likely attempt CPR if the death could not be certified. Could you explain further what you mean by this?

Thanks

mike stone 03/05/17

Moved from DiA:

Victoria Hinds 30 April 10:05

Give!

Mike Stone 23 hrs ago

I've no idea what 'Give!' is supposed to mean. But I suspect it is critical [of me?]

mike stone 03/05/17

I'm going to start with some recent e-mails I've had from a doctor at the Welsh Ambulance Services NHS Trust (with permission to share). I sent a slightly different question [it amounted to 'why should the life-partner of a collapsed terminally-diagnosed patient, accept that a 999 paramedic 'decides what should happen next'?' https://twitter.com/MikeStone_EoL/status/855400572937285637 ]and the reply I received included this:

START

Thank you for your email which was passed on to me for comment.
Decisions around resuscitation, and in particular a decision that clinicians should not attempt resuscitation (DNACPR) are inevitably very complex in some cases. From the perspective of the ambulance service, we are often called once a patient suffers a cardiac arrest, and there is very limited time available to the attending ambulance clinicians, in order to determine whether CPR is appropriate. In such circumstances, ambulance clinicians will commence CPR until further information is available.

To a great extent therefore, we rely heavily on the planning already put in place by other healthcare professionals.

ENDS
When I asked for permission to publish the above, I included Sally-Ann Martin's post in my e-mail:

27/04/17 - 19:31
Sally-Ann Martin

I have just had an incident where I had to run to a room and give CPR, but I could feel the skin was cold. Not only that, when the paramedics arrived, there was a single line on the monitor. THey honestly brought him back to life, by breaking his ribs, sawing into the leg for something, and they got a pulse. I steered the woman into the lounge, so that she didn't see all this.

They went to hospital, and he "died" 4 times on the way there. Another 4 times he was resuscitated. At the hospital, the doctor just walked up to the wife and asked what her wishes were, and she said, "let him die". That was it then, they allowed my resident to die peacefully. no more jerks and thumps on the body.

Why is it in CARE that the rules of engagement are so different? Why couldn't I have asked the wife exactly the same question?
THis man had choked on his vomit, had a heart attack, suffered a stroke a while back, and yet, I still had to perform CPR! His body had had enough, and only his wife could see this....................

Where was this guys dignity?

ENDS

The chap at WAS wrote in his e-mail:

Yes of course - please feel free to share my letter with whomever you wish.

The scenario outlined in the email trail, of someone who I am picturing as a relatively frail resident of a residential type home, undergoing resuscitation - is sadly a common one.

For me, this highlights the need to ensure we have appropriate advanced care planning for all patients - including their wishes on CPR, but also their wishes on other therapies (such as admission to hospital for intravenous antibiotics, as opposed to treatment at their home with oral antibiotics - even if the latter is less likely to be successful - but where it is the patient's desire).

In my experience, this is done very well for patients under the care of some specialties, but is often less successfully undertaken for other patients.

By the time someone is calling 999 it's often (though not always of course) a bit late to have these conversations - and I think we all agree they need to be had much earlier in a person's care.

I know this is the focus of ongoing work.

ENDS

Now, moving on to the scenario sent to me by the doctor. It is interesting that he is 72, and when I constructed my 'Alan and Liz' scenario I made Alan 73.

I usually start my scenarios with a conversation between the patient and someone else: in 'Alan and Liz' with his GP, and in another of my scenarios with a family carer. My scenarios start by informing the reader of what a family carer knows - this isn't true in the doctor's scenario, where we are only aware of what family members say. I strongly suspect that if 999 paramedics constructed scenarios, they would start from 'what we can see'.

However, there is a move towards more end-of-life 'care' - and death - at home. When my dying father was in hospital for about 6 weeks, I was really stressed whenever I wasn't visiting by the 'I don't know how he is NOW' factor. My mum died at home - there is no nagging 'has he/she died' question, which is there and builds when a very ill loved-one is in hospital, when the person is in the same home as you. As it happened, my mum was comatose for about 4 days before she died - but before 'has she died' becomes 'even an unconscious issue' you simply go and check.

'The system' seems to struggle with the fact that 'it isn't present during EoL at home' - but it makes no sense at all (it simply doesn't allow for joined-up patient support) for 'the system' to get from 'we were not there' to 'because we were not there we cannot trust family carers'.

It is also, to my mind, incredibly offensive for this sort of 'distrust of family carers by default' to be thrown into the mix, when family carers are already having to come to terms with the dying/death of a loved one.

I fear that the people who will make sense of what follows, are those people who don't need to read it, because they already understand it (twas ever thus!).

I wrote something, years ago in an e-mail, along the lines of:
'most family carers are thinking 'would my loved-one want this to happen ?'' but I suspect that a lot of 999 paramedics are thinking 'what will my boss, or the coroner, make of what I do next ?'

One strong theme in the discussion, and from the WAS e-mails, is that 999 paramedics tend to follow written documentation. In particular, there is a lot of significance placed in 'DNACPR forms' and in records signed by the GP. Our law is clear that a written Advance Decision forbidding CPR - signed by the patient, and in theory not necessarily ever seen by the GP - carries a 'legal authority' which is entirely lacking for a 'DNACPR form' which is signed only by a GP. Despite this, 'the system promotes DNACPR forms' and not ADRTs - bluntly, 'the system' seems to want senior clinicians to somehow 'verify or authorise' decisions which are not decisions for the senior clinician to make.

We need an entirely different 'model' for EoL at home - see my Core Care Team model as briefly described in my tweet

https://twitter.com/MikeStone_EoL/status/856423642158247936

My Core Care Team model places 'ongoing contact with the patient' at its heart, and relegates written records to a position of lesser, secondary importance. It also de-emphasises any professional-lay distinctions: my model emphasises understanding and communication.

We cannot know what the 72 yr-old said to auntie Mabel, auntie Dottie, and nephew Jamie - but they will know. We can't know why, if the man told them what he made clear to his GP, he doesn't seem to have also told his son (perhaps he knew his son would disagree with his decision - who knows).

We can 'know', that if you read section 4 of the Mental Capacity Act, it seems very obvious that whatever has been written down, a 999 paramedic could never 'defensibly make a best-interests DNACPR decision'. The ReSPECT team have accepted this by virtue of the very existence of their ReSPECT form, which is intended to guide decision-making during 'clinical emergencies' - so, put in legal terms, the ReSPECT authors have accepted that best-interests decision-making is superior to 'the defence of necessity'.

What neither ReSPECT, not contemporary DNACPR forms, 'accept' is that during known EoL (and in the scenario we have been discussing here, ASSUMING the 3 relatives were 'told by the 72 yr-old') family carers are LEGALLY REQUIRED to make best-interests decisions: if the family must act in 'best interests', and if we can deduce that 999 clinicians cannot make best-interests decisions, then what the professionals keep writing 'makes no logical sense'.

And this, another of my recent tweets, gets to the heart of it
https://twitter.com/MikeStone_EoL/status/855701384922112000

The other interesting thing from the thread, is the 'down for 18 minutes' aspect - almost everyone agrees that this is too long to be at all optimistic of a clinically-good outcome even if CPR 'worked': but that doesn't seem to be enough to prevent the 999 Services from attempting CPR.

We therefore have a 'perverse situation' to my mind, of 999 paramedics applying a treatment when if you asked them in a lecture theatre, they would probably tell you 'we would expect bad outcomes' - which is surely 'very strange'.

I said that I would answer Sally-Ann Martin's question:

'Why is it in CARE that the rules of engagement are so different? Why couldn't I have asked the wife exactly the same question?'

The answer, bluntly, is that 'the system respects 'a clinical hierarchy'' - it respects the signatures of GPs and Consultants - to the DETRIMENT of 'respecting the autonomy of patients' as explained to relatives, care-home staff, etc.

As Dr Gordon Caldwell tweeted:
Dr Gordon Caldwell? @doctorcaldwell 23h23 hours ago
Replying to @MikeStone_EoL
Best current advice would be Don't phone if you don't want someone to do #CPR Until some wisdom comes back for Care of the Dying

Please keep adding to this thread, if the urge takes you - as Welsh Ambulance Service pointed out (the 'this' was perhaps a bit more restrictive - most NHS professionals 'see the answer as better record' but I see the answer as 'believing what family carers say'):

'I know this is the focus of ongoing work.'


mike stone 03/05/17

Hi Emma,

Assuming that you are not a 999 paramedic - have you talked to many of them ?

As for '999 paramedics are quite likely to attempt CPR if they know the death could not be certified' - I feel sure that is true.

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=847&forumID=45

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

The people in the most difficult situations for EoL at home, aside from the patient, are family carers and 999 paramedics: the problem is that the family carers are usually unsure of the clinical situation, but often DO KNOW 'what the patient would have wanted to happen next' - while paramedics are told to look for 'documentation signed by the GP'. Paramedics are not told to 'follow the greater holistic understanding of the situation which the family carers will almost certainly possess - until they are told to do that, and the system is accepting of that, 'family carers and 999 paramedics will often be in conflict'. That should not be the case - everyone should be supporting the patient.

mike stone 04/05/17

I have just posted this discussion thread on Twitter at

https://twitter.com/MikeStone_EoL/status/860044771146027008

If I get tweeted comments, I will copy them here.

Christine Davis 10/05/17

The paramedics should definitely attempt CPR in this instance.

mike stone 19/05/17

Re Emma Hildrew's comment about ADRTs and their effectiveness, and my suggestion 'no they aren't'.

During a Twitter discussion yesterday, Lucy Selman, posted a link to her recent paper in a tweet at:

https://twitter.com/Lucy_Selman/status/839825263114481664

The paper investigates how GPs learn about end-of-life, and I hope you can find it at:

http://www.readcube.com/articles/10.1186/s12904-017-0191-2?author_access_token=hMrJIk6r-SN1my0PrNw5fG_BpE1tBhCbnbw3BuzI2RNzR75svwcLA0dUlcn2GIp3OGTQGrthnP1LoYcL_rw4I44LQQr4lzRPuk6e-n1SpMqP3uqAD8i5JHU1GsaDVqiKCSfeOiF-_vSjkuWm66dnWw%3D%3D

I posted a tweet about this problem, including what a GP said in the paper, at:

https://twitter.com/MikeStone_EoL/status/865485294912417792

The GP said:

I have so many examples of palliative care patients who had all the conversations... They are on that register they are always trying to get us to put people on, and then they still end up going and dying in hospital... You have spent however many hours, and you think, what really have I achieved here?' (GP05)