DNR & POA

emmamac

Registered User
Sep 15, 2009
94
0
Hello everyone,

Mum is 91 next week and is in a care home with advanced vascular dementia. Yesterday they asked me if I would like a DNR on file for mum and I said yes, that should mum's heart or breathing stop, I do not want her resuscitated. I have POA for health & welfare and the home were happy with this. Today I had a call from her new GP who was fairly patronising but said she would need to have this discussion with mum. I asked why and she said 'Well, we can't put it in place behind her back". I said that she will not understand the discussion and asked how she would broach it. She said she would ask her about her quality of life, and if she said she was unhappy or had 'had enough' she would say there were things they could do should she 'pass away'! I was horrified at the thought of this conversation and said I felt she may find this distressing. She said she would make an assessment of that when she visited. In the end I said I wasn't going to agree to a DNR if it meant putting mum through a stressful conversation and causing any upset. She won't understand fully, but she will understand talk about 'passing away'. I'm feeling really upset as the GP almost implied that I can't be trusted to make the right choices that I know mum - when well - would've wanted. Apparently, this is all down to rules by the CQC?

Am I just being over sensitive?
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
Yet another doctor with no first hand experience of dementia. Idiot. It is so frustrating to have them behave like this.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Hello everyone,

Mum is 91 next week and is in a care home with advanced vascular dementia. Yesterday they asked me if I would like a DNR on file for mum and I said yes, that should mum's heart or breathing stop, I do not want her resuscitated. I have POA for health & welfare and the home were happy with this. Today I had a call from her new GP who was fairly patronising but said she would need to have this discussion with mum. I asked why and she said 'Well, we can't put it in place behind her back". I said that she will not understand the discussion and asked how she would broach it. She said she would ask her about her quality of life, and if she said she was unhappy or had 'had enough' she would say there were things they could do should she 'pass away'! I was horrified at the thought of this conversation and said I felt she may find this distressing. She said she would make an assessment of that when she visited. In the end I said I wasn't going to agree to a DNR if it meant putting mum through a stressful conversation and causing any upset. She won't understand fully, but she will understand talk about 'passing away'. I'm feeling really upset as the GP almost implied that I can't be trusted to make the right choices that I know mum - when well - would've wanted. Apparently, this is all down to rules by the CQC?

Am I just being over sensitive?

Hi @emmamac I had this very same discussion when dad was in hospital recently. I was asked very discreetly if I had POA and if I would agree to a DNR for dad if his heart stopped but they would continue all other treatment such as antibiotics etc.

I said yes I would agree. At no time did anyone discuss this with dad and if they had he would have insisted upon being resuscitated because he thinks that he is as fit as a fiddle and thirty years younger than he is. It would be absolutely wrong to attempt any type of resuscitation on my dad because he is 88 years old, very frail, has cancer, advanced dementia and his quality of life his deteriorated to such an extent that I would consider it a blessing if his heart gave out.

That is my opinion and no you are not being over sensitive. I have never heard of this CQC rule and I would question it if I were you because it is not in the patients best interest as far as I am concerned.

Hopefully others may be more informed than I am but it seems ridiculous to me.
 

Ohso

Registered User
Jan 4, 2018
167
0
Mum and I have long discussed what her wished would be, mainly after my gran was in A&E at 83 and being treated in a way we felt she would not have wanted but at that time not having anything in place she was at the mercy of the intensive care team who eventually stopped treating her and allowed her to pass away peacefully, but left my mum feeling incredibly guilty that she hadn't been able to express her wishes to stop earlier. I have POA for mum ( health and finance) and feel I know her wishes very well, she tells me on an almost daily basis that she is ready to go, but as she is actually very healthy apart from dementia and well controlled diabetes, her wish to go to bed and not wake up seems unlikely for some time to come.
Fast forwards to now, a couple of weeks ago the community nurse came and the conversation got round to mums wishes, and grew legs, she asked mum is she wanted to have a 'My wishes advance care plan' declaration put on a register, which mum agreed to, so the nurse went through the 12 relatively simple questions which mum answered willingly in a very reasoned and logical manner, the nurse further asked if mum would like a DNR for Cardiopulmonary Resuscitation, again mum agreed.
I have to say, I hadn't known in advance that the subject would be discussed and all seemed to stem from mums desire to be able to stay at home as long as possible and that she hoped to die there, so when she started with the questions I actually became uncomfortable but mum wasn't, she just chatted away easily, possibly as she is 83 and realises she has very little quality of life, she doesn't leave the house unless I take her and only when necessary, she forgets she has visitors so feels she has been abandoned by all her friends and most of her family, (this isn't true but its how she feels) she sits and watches TV but cant remember what she is watching so is constantly flicking channels and watching snippets of lots of programmes.
I think she welcomed the DNR as she now knows that in the event she takes a turn for the worse there wont be interference and her being revived to be in an even worse situation than she is now.

Im not sure what would have happened without the conversation, I guess that at the time the medical team would be the driving force for any decisions with input from me only once they made a decision not to treat and would need me to go along with it, rather than face accusations of giving up too soon.
 

Pouli

Registered User
Feb 9, 2019
49
0
Hello everyone,

Mum is 91 next week and is in a care home with advanced vascular dementia. Yesterday they asked me if I would like a DNR on file for mum and I said yes, that should mum's heart or breathing stop, I do not want her resuscitated. I have POA for health & welfare and the home were happy with this. Today I had a call from her new GP who was fairly patronising but said she would need to have this discussion with mum. I asked why and she said 'Well, we can't put it in place behind her back". I said that she will not understand the discussion and asked how she would broach it. She said she would ask her about her quality of life, and if she said she was unhappy or had 'had enough' she would say there were things they could do should she 'pass away'! I was horrified at the thought of this conversation and said I felt she may find this distressing. She said she would make an assessment of that when she visited. In the end I said I wasn't going to agree to a DNR if it meant putting mum through a stressful conversation and causing any upset. She won't understand fully, but she will understand talk about 'passing away'. I'm feeling really upset as the GP almost implied that I can't be trusted to make the right choices that I know mum - when well - would've wanted. Apparently, this is all down to rules by the CQC?

Am I just being over sensitive?
No, you aren't. My mother was in hospital when she was 93. She didn't have dementia and they kept having the DNR discussion with her, and although she clearly didn't want a DNR in place they continued to bring the subject up. She knew perfectly well what they were saying and began to get very upset. I asked them to stop, and said if such a time came, could I be the one to make the decision. No, it had to come from her, they said. She had said many times she didn't want a DNR, yet they kept banging on at her to have it. So I got angry,and said she had made her decision, and that if anyone brought it up with her again I would lay a formal complaint, and take it to the very top. Their 'duty of care' did not sit well with harassing an old lady. Some doctors can be really insensitive, and one has to insist, politely, to get them to stop. I didn't have to make the complaint, but I made it clear that I would have.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
I can only say that I made the decision on behalf of my mum and no-one asked mum about it at all.
I didnt even have H&W POA.
 

Sirena

Registered User
Feb 27, 2018
2,324
0
The doctor must have misunderstood CQC requirements. My mother is in a care home and I was asked to do a DNaR for her last year - I don't have H&W POA, just finance. I agreed the DNaR with the manager of the care home, who said the GP might call me to discuss it (he didn't, it just went ahead). There was no suggestion that he would discuss it with my mother, who would not have a clue what he was talking about anyway, she barely understands "it's time for lunch" never mind a complicated tale about resuscitation.
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
0
Kent
No discussion with dad and family agreed for him that DNR should be put in place. Inexperienced GP in this particular scenario and/or insensitive jobsworth tick box not understanding dementia bull in a china shop springs to mind.
 

emmamac

Registered User
Sep 15, 2009
94
0
Thank you everyone. I feel better just for reading your replies. I am livid....the GP was certainly not young so can only assume she was adopting the heavy handed/cover her own back stance. I spoke with the home who were equally shocked but feel DNR is the way to go and reassured me that they would be with mum for any such discussion. As I definitely want the DNR in place, I've aksed them to advise the GP (who had already contacted them apparently) and say to go ahead. However, after reading your replies, I am going to investigate the CQC guidance and if necessary I will complain to the surgery. I did ask if they could get another GP from there to carry out the assessment/discussion.
 

Banjomansmate

Registered User
Jan 13, 2019
5,395
0
Dorset
You sometimes have to wonder at GPs. Despite being aware that he had dementia, late last year one of the practice GPs asked him about having DNAR in place and he said that “As they had done it before they would do it again” (Ten years ago he collapsed and was resuscitated and given a pacemaker). The Dr. and I both tried to point out that he wasn’t as young or fit as he was then but with no concept of his own mental deterioration and what it meant for the future he insisted he wanted to be resuscitated if it came to it!
A couple of weeks later he was in hospital with delirium and an infection and thankfully DNAR was put on his file by the Dr. there. When he reached the Care Home they asked me about DNAR and when they found the hospital decision it was accepted and recorded in his file. I breathed a sigh of relief!
 

Louise7

Volunteer Host
Mar 25, 2016
4,693
0
Whilst I can't see any specific CQC guidance with regards DNAR I know that one of the areas they cover in their inspections is whether the Mental Capacity Act is being adhered to (this is relevant to DNAR decisions).

This states that someone should be assisted to make their own decisions where possible. If they are deemed to lack mental capacity then a 'best interests' decision should be made, in consultation with family/carers/ attorney with LPA:

https://www.nhs.uk/conditions/social-care-and-support-guide/making-decisions-for-someone-else/mental-capacity-act/

Does your Mum lack mental capacity? If so, the GP should have approached you to discuss this, not your Mum.

When Mum was in hospital last year we discovered, on subsequent receipt of her hospital notes, that a DNAR had been put in place without the family's knowledge. The form stated that Mum was 'confused' and lacked capacity and that I had agreed with a hospital doctor to put a DNAR in place. I have H&W LPA and had no such discussion with the doctor. Mum was not at 'end of life' - she had walked into A&E for treatment to a cut eyebrow. We are currently awaiting a response from the hospital with regards to why they did not follow the mental capacity act. It is unlawful to put a DNAR in place without attempting to consult with either the individual or their family/attorney/carer (except in emergency situations).
 

witts1973

Registered User
Jun 20, 2018
731
0
Leamington Spa
Hello everyone,

Mum is 91 next week and is in a care home with advanced vascular dementia. Yesterday they asked me if I would like a DNR on file for mum and I said yes, that should mum's heart or breathing stop, I do not want her resuscitated. I have POA for health & welfare and the home were happy with this. Today I had a call from her new GP who was fairly patronising but said she would need to have this discussion with mum. I asked why and she said 'Well, we can't put it in place behind her back". I said that she will not understand the discussion and asked how she would broach it. She said she would ask her about her quality of life, and if she said she was unhappy or had 'had enough' she would say there were things they could do should she 'pass away'! I was horrified at the thought of this conversation and said I felt she may find this distressing. She said she would make an assessment of that when she visited. In the end I said I wasn't going to agree to a DNR if it meant putting mum through a stressful conversation and causing any upset. She won't understand fully, but she will understand talk about 'passing away'. I'm feeling really upset as the GP almost implied that I can't be trusted to make the right choices that I know mum - when well - would've wanted. Apparently, this is all down to rules by the CQC?

Am I just being over sensitive?

Hi we had the visit from a nurse 2 weeks ago(at home were mum is cared for) to fill out these forms and I did say to her,my mum doesn't even know that she is ill so how does this work?,she said not to worry but she would have to have the chat and fill forms while my mum was there,I assume it has to be done that way,it was done in such a way by this nice lady that it wasn't distressing in the slightest,and I had been dreading it.
I collected the forms for it this afternoon and I'm glad we have the plan in place now.
 

Sirena

Registered User
Feb 27, 2018
2,324
0
Whilst I can't see any specific CQC guidance with regards DNAR I know that one of the areas they cover in their inspections is whether the Mental Capacity Act is being adhered to (this is relevant to DNAR decisions).

This states that someone should be assisted to make their own decisions where possible. If they are deemed to lack mental capacity then a 'best interests' decision should be made, in consultation with family/carers/ attorney with LPA:

Are there many people in a dementia care home who have capacity? I would doubt it (I can't think of a single one in my mother's CH). There may be a few, but surely the GP would at least have the question in mind, rather than instantly assuming the person must have capacity and need to be consulted. The fact that she is speaking to a relative who has H&W POA would indicate capacity is questionable.
 

Louise7

Volunteer Host
Mar 25, 2016
4,693
0
I agree, but the GP's reference to the 'CQC rules' may suggest that the surgery has had an inspection and been reminded to ensure they adhere to the memtal health act. Seems a bit over officious but might explain their insistence on makimg attempts to discuss with the indivifual rather than the LPA attorney.
 

Witzend

Registered User
Aug 29, 2007
4,283
0
SW London
The GP may well be clueless about dementia - it's not exactly unknown - but I dare say it's a case of having to tick official,boxes. Certainly sounds as if she could have handled the conversation a great deal,better.

It's a bit like when a social worker informed me that she needed to interview my mother to make sure she needed to be in a secure care home. At that point my mother had been there over 7'years, she was nearly 97, with late stage dementia, and was well past comprehending or responding to any conversation. All of which I pointed out, but the box had to be ticked. My mother died just a few weeks later.
 

Sam Luvit

Registered User
Oct 19, 2016
6,083
0
East Sussex
Following her stroke, mum asked the hospital to put a DNAR in place (she was a retired nurse), the hospital spoke to me about it, to let me know, then again after the paperwork had been completed, so I knew mum had it in place

Fast forward three months, Mum was back in hospital after falling & breaking her arm. (The same hospital). While I’m visiting, mum tells me “I died last night”. I query why she thinks she died & she tells me about waking up, bright lights & realising she’s “upstairs”, knows she’s in the wrong place, coz she’s definately heading for “downstairs”, so she had to hurry back :D

Although I’d asked how mum was when I arrived, nothing was said about a bad night, or any events. So, I go & find a doctor (surprising how hard that is in a hospital :rolleyes:). Turns out, mum did have something happen in the night. She was unresponsive for several minutes, but they “got her back”

Not well impressed, I reminded them that as she has a DNAR in place, I want to be told immediately of anything like that, as I might need to drive the 20 miles in a hurry

“What DNAR?” They knew nothing about it. Not in her file :confused:

They only lost the form :eek: They had all the notes showing they had discussed it with mum, which doctor had signed the form, but the red form was missing :eek: They had to do it again. This time discussing it with me :rolleyes:
 

Banjomansmate

Registered User
Jan 13, 2019
5,395
0
Dorset
Oh yes, if it isn’t in the “current” hospital admission file then it doesn’t exist. The Banjoman was admitted to hospital with what turned out to be sepsis, last July and I took in copies of LPA and Advance directive which were photocopied and put in his file. Come readmission in December I had to take them in again as “They weren’t in his current case notes”,and when he stopped eating in January and the hospital were talking of intubating him I had to point out that there was a copy of his Advance directive in his file. “Oh”, said the nurse, “I will have a look at that later”. Luckily he finally decided to start eating again!
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
Im not sure what would have happened without the conversation, I guess that at the time the medical team would be the driving force for any decisions with input from me only once they made a decision not to treat and would need me to go along with it, rather than face accusations of giving up too soon.[/QUOTE]

I think that this is at the heart of what I believe is a shift in approaches to DNR decisions and the questions of quality of life in the frail elderly.

When my husband had his cardiac arrest over five years ago and in an induced coma in ICU, the Director of Intensive Care came and talked to me about possible outcomes and what decisions might have to made. He indicated to me very tactfully that failure to breathe on his own, severe brain damage etc, that they would give him four days to to give him a chance to show a little improvement before they thought that the decision to turn his life support off would need to be made.

I am convinced that this time period was more for the benefit of the family rather than the patient, a chance for the family to come to terms with the coming loss of their loved one, and so that they would feel that everything possible had been done.

Our local hospital has a free service that helps people arrange an Advanced Care Plan, copies of which are held at the hospital, at our GP's and by the people I have selected to be my decision makers. It is a legal document and with recent legislation, doctors cannot act beyond the limitations laid out in the document.

I think this service is a reflection of how opinion is changing, a consideration that when an intervention might prolong a person's life but also prolong their pain and suffering, it might not be in the person's best interests.

I guess that some doctors might have trouble being comfortable with these changes and perhaps they find it difficult to deal with it in a sensitive way.
 

Lemondrizzle

Registered User
Aug 26, 2018
246
0
Oh yes, if it isn’t in the “current” hospital admission file then it doesn’t exist. The Banjoman was admitted to hospital with what turned out to be sepsis, last July and I took in copies of LPA and Advance directive which were photocopied and put in his file. Come readmission in December I had to take them in again as “They weren’t in his current case notes”,and when he stopped eating in January and the hospital were talking of intubating him I had to point out that there was a copy of his Advance directive in his file. “Oh”, said the nurse, “I will have a look at that later”. Luckily he finally decided to start eating again!

This is our experience too. They didn't even look at mum's previous scan, never mind have her DNAR to hand.
 

Louise7

Volunteer Host
Mar 25, 2016
4,693
0
The DNAR forms at my Mum's hospital trust were annotated 'Valid for duration of this admission only' with a note at the bottom advising that the form should be destroyed on discharge. Not sure if this is the same in other Trust's.

They didn't even look at mum's previous scan,

That's the problem with hospitals having out-dated paper records - nothing is 'joined-up'. Mum had a series of falls last year and on each admission they identified an easily treatable heart problem (which can cause falls) but just 'patched her up' and discharged her, not bothering to look at the previous admission details.
 

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