ReSPECT Enquiry

[colpatben]

I have been advised to replace each of our do-not-resuscitate (DNR) with a Recommended Summary Plan for Emergency Care & Treatment (ReSPECT) form.

It appears that the first port of call would be Resuscitation Council UK website https://www.resus.org.uk/

As I understand the procedure first need you to ascertain if your local NHS Trust have adopted this process!

https://www.resus.org.uk/respect/respect-patients-and-carers/respect-adoption-uk which ours has.

The question is:

Has anyone had experience of putting a ReSPECT in place for a PWD, bearing in mind that this form has to be completed by a Health Care Professional?

Many thanks in advance to anyone who may be able to steer me along the right path.


Colin.

 

[Rayreadynow]

I am assuming that you have POA for Health and Welfare?

 

[colpatben]

I am assuming that you have POA for Health and Welfare?

Yes indeed, and the DNR is specially recorded in it.

 

[Louise7]

Hello @colpatben the ReSPECT process should start as a two way conversation between a medical professional and the patient (or their H&W Attorney if they no longer have capacity) but can also include discussion with other family members and those involved in the person's care. Although my local Trust has not adopted ReSPECT they do have a similar process where a document called a 'Resuscitation Plan' is completed in hospitals. The best thing to do is to speak to the GP to get the conversation started. I don't know if you've seen the link below on the Resuscitation Council UK website but it includes a useful video which explains how the discussion process works:

ReSPECT for healthcare professionals

With ReSPECT, healthcare professionals are able to help patients create personalised recommendation for clinical care for use in emergency situations.

www.resus.org.uk

 

[Tabitha2]

This is interesting, as I have concerns regarding RESPECT forms and how and when they are created. My partner and parents all had theirs completed while they were in hospital with no contact whatsoever with family. My partner and father had both been diagnosed with dementia and my mother has no formal diagnosis but is clearly extremely muddled. In my opinion none of them would have been able to understand what they were all about. I have no idea what qualifications the healthcare professional who completed the form had to enable them to declare they were competent. Also, the medical information contained on my partner's form was actually incorrect, and I did manage to get that crossed out, but despite mentioning my concerns on every occasions when my partner was hospitalised regarding the creation of the form and my partner's ability to understand what it all meant, I was basically fobbed off with "oh we can get it looked at" type answers, but nothing actually happened. Obviously at the time you are under so much stress and pressure trying to look after your loved ones that things like that tend to get pushed to the back of "things I need to deal with NOW".

Don't get me wrong, I think they are a good idea in theory, but the lack of any communication with relatives when it is known that the person has dementia, is just plain wrong - they may still have capacity to make the decisions but surely some contact with those who know them best is just common sense? (I didn't/don't have POA but the hospital staff who completed the forms didn't know that because they didn't contact anyone to find out). I think if you have the opportunity to commence the process yourself that would be ideal, and you can ask any questions at the time of completion (not sure who would need to complete it though) and make sure everyone, including the patient, fully understands what the information put on the form actually means. Mind you, although paramedics have always asked if there is a form in existence for whichever one of my family they were taking into hospital, and put it with their thing, the hospitals seem not to look at it!

 

[colpatben]

Thanks @Louise7 I hadn't thought to look at that part on their website I will look through it and see what other info I can find.

I will need to make some enquiries at our GP and progress from there. I would still like to hear from any Forum members who may have had experience of applying for a ReSPECT form for their PWD.

Hi @Tabitha2 Now that is an interesting scenario and somewhat worrying!

I will keep this Topic going and post my own progress on this subject.

Colin

 

[Palerider]

I have been advised to replace each of our do-not-resuscitate (DNR) with a Recommended Summary Plan for Emergency Care & Treatment (ReSPECT) form.

It appears that the first port of call would be Resuscitation Council UK website https://www.resus.org.uk/

As I understand the procedure first need you to ascertain if your local NHS Trust have adopted this process!

https://www.resus.org.uk/respect/respect-patients-and-carers/respect-adoption-uk which ours has.

The question is:

Has anyone had experience of putting a ReSPECT in place for a PWD, bearing in mind that this form has to be completed by a Health Care Professional?

Many thanks in advance to anyone who may be able to steer me along the right path.


Colin.

Hi @colpatben

I initiated the conversation with my mums GP when she had begun to significantly deteriorate in line with my mums wishes and at the time she did have an episode where for a moment the GP and hospital thought she was end-of -life, she did however rally. The last conversation around it was with mums GP a few years before while she was still very able and my mum made it clear that she would not want resuscitation if she 'lost her marbles'. I initiated the conversation because I felt that mum was now where she did not want to be and the GP had already wanted to discuss a plan if mum should take a turn for the worse. The last thing my mum would want is someone pushing on her chest when the chances of survival are exceptionally low and even if she did survive she would still be facing a death from an incurable disease as well as then compounded by significant injuries from the resuscitation attempt -which would only worsen her overall position.

The ResPECT process is an improvement however by experience I will say that the process is either applied really well or not very well at all. The decision to not resuscitate is a medical one but this should be discussed with the person themselves or where it is not possible to do this then their NOK/family or friend/s -whoever is nominated as the key contact and this is where things can fall apart sometimes - lack of a conversation around the decision and why the decision has been made tends to be the biggest cause of complaints. So you need to ensure that you are given the opportunity to be informed of the decision and also the opportunity to speak with the relevant healthcare professional and ask any questions or offer any insight as to what the person would or would not have wanted. Sometimes the decision not to resuscitate is taken badly by family or certain members who may disagree and this may need more time to adjust to the decision or ask further questions. The ResPECT form is also supposed to offer an alternative plan to resuscitation should a person deteriorate such as palliation or end-of-life care.

 

[SherwoodSue]

We have several Respect forms as the process seems to be repeated with every hospital admission. Several have my signature on as well or agreement gained over the phone (COVID)

I have a more relaxed attitude to the situation being of a medical background myself.

Of course as a young (ish) person who understands the process it causes me no distress. I have seen the process viewed differently by the very elderly as they grew up in a different culture.

Our recently departed queen lost her father to lung cancer. She didn’t know he was ill when she went away and indeed her father didn’t know his diagnosis either. The doctors knew and decided it was in every one’s interest for them to keep this information to themselves. The fear was the patient might ‘give their neck up’ if they knew.

SHOCKING by todays standards but that’s how it was even for the Royals.

So, can you imagine the complete 180 degrees turn around when the very elderly were suddenly invited into decision making process.
A very elderly fiend had a husband on dialysis. He had more than one dense stroke , heart problems, dementia and increasingly medical interventions were FUTILE

So the wife was invited into the decision making process to give up on the dialysis and let him become more comfortable, he was unconscious by now but I couldn’t shake her from the notion that she had killed her husband by signing his death warrant.
I know that if the doctor had said to her , look, after great discussion this is what the team have decided is the best ; she would have had much more peace.

I share this only to illustrate that there are issues how ever it’s done. People have cardiac arrests and people pass away. They aren’t the same thing. CPR is violent if it is done properly, ribs broken etc Usually ineffective where many organs are fairly anyway. It’s not what I would want for me and mine

It doesn’t mean that you are worthless and we won’t care for you , which is how I fear some people process the subject

It is a difficult situation all round.

 

[Tabitha2]

The RESPECT form involves more than DNR, which I would take as basically meaning no CPR. CPR on elderly, frail or seriously ill individuals would, as SherwoodSue said, be inappropriate as the likelihood of a good recovery would be small, and the quality of life afterwards would probably be pretty poor. My partner was down for no CPR, no intubation but OK for NIV. I had no idea what that meant, and I'm sure he didn't either. Elderly frail patients are not always considered suitable for intubation because the likelihood of them being successfully taken off ventilation is small. NIV (non-invasive ventilation) is considered to have a better chance, but again not always possible for patients to survive once they are taken off it. I was not too keen on him having the NIV but they said he would die without it, and I think they would have ignored my opinion even if I had had POA (they didn't ask). I understand why - their job is to save lives (this was in A and E), and they are in an emergency situation so have to work quickly.

The phrase "not for ITU, ward based care only" was interpreted as my partner being happy to be taken back into hospital despite him being adamant be did not want to return (having been in and out three times over a period of 6 weeks, and being weaker and less well than when he went in each time.) He had always said he did not want hospital treatment, but on each occasion I had told him he had to go or he would probably die, and the paramedics agreed of course. On the last occasion I agreed with him that it was a pointless exercise and said he should stay at home, but because of his dementia he was considered unable to make an informed decision, and the RESPECT form said "ward based care"! Fortunately the wonderful paramedic made lots of phone calls and in the end my partner was allowed to stay at home and was placed under the care of the palliative team.

As Palerider said, the form is meant to document what care and treatment should be given or withheld when the situation becomes serious, and I have no idea what questions or alternatives to hospital treatment were mentioned to my partner because he had no recollection of it even being completed and I was not there at the time it was done.

 

[colpatben]

Phoned the Surgery earlier and quite simple really.

A Paramedic usually does the interview and completes the forms, and for us they will call in the next couple of days and arrange the initial interviews at home!

So far so good.

I'll keep you all posted.

Colin.

 

[sdmhred]

We did the form in discussions with GP. I Knew mum’s wishes well enough to make it her choices. Although it has left me in fear that I would have to make the call regarding IV treatment in hospital for infection or not as that was one of the question.

ironically we’re now in hospital dying from a major stroke.Even though hospital was a no for a stroke / heart attack in her form. We didn’t know that was what it was at the time ..and as she needed oxygen to stay comfortable there was no choice….we’re now in a side room and actually on reflection it’s more peaceful than back at the care home with the wanderers and shouters nearby.

 

[colpatben]

Dear @sdmhred

Thank you for taking the time to put the point about answering NO to the choice of if having suffered a stroke as to whether to go into hospital, then the decision regarding medication for comfort (Oxygen). Which has made me think about any answers to specifically asked questions by a medic completing this form.

I am for the umpteenth time reading the ReSPECT form and thinking on how I/we may answer these questions with Patsy’s current level of Dementia and her advancing COPD.

I know her wishes regarding DNAR so I can honestly answer that question on her behalf should I need to.

I, like many others have been following you over the last year or so on ‘Our magic bitter sweet moments’ and am constantly thinking of you.

Colin.