DNR end of life options ? ( when applicable)

channa

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Forgive the morbid nature of the subject

The last couple of weeks I have had some pretty serious decisions to make, On Thursday I had a telephone conversation with my renal consultant and the do not resuscitate, end of life care subject was broached and it is time to think of the options should the situation present itself ( hopefully way off that) I suspect no more than the medical people crossing t,s and dotting I,s planning for possible eventualities

Have other members found themselves in a similar position ? What were your thought processes?

I am video conferencing with Doctor later this morning and a subject on the agenda

A little later if anyone is interested I shall explain the reasons for how the conversation was instigated.

My thoughts are all to do with the post quality of life the rub with that is no one knows until you find yourself in that situation
 

Okta

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Set up a Health and Welfare Lasting Power of Attorney. Whilst you remain capable of making decisions you can decide nearer the time. If you suddenly become incapable of making such decisions your chosen people can decide depending on you chances of making a recovery and having a decent quality of life. When my son and daughter were my attorneys I told them that if they could not agree then I had already voted for turning the machines off.
 

nomis64

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You always have the right to decline a treatment if it is against your wishes - general someone would do that if the treatment was futile or the side effects worse than the benefits. So imagine you have a chronic severe life limiting illness and you are in hospital with your family present. If you have a DNAR and you take a turn for the worse they can sit with you and hold your hand (well, they could pre Co19) but if you don't and you are not well enough to tell them to stop the on-call medical team will rush in, insist your family leave instantly (no goodbyes) do CPR (which often breaks ribs) electrocute you repeatedly and shove no end of sharp things in your arms or chest. That will be your last awareness. Your family will be traumatised even more. And IF you survive (you probably wont) you may live for a few weeks on ITU and still die. CPR was invented for people with acute cardiac insults. It works well with the cold water drowning scenario or an acute myocardial infarction associated arrhythmia. It doesn't work well if your normal lifespan is nearly over. So basically you have a chance to express your wishes, having heard how your current situation affects the chance of the treatment working, just like an operation, just that IF IT HAPPENS you wont have time to express your wishes.
ps I'm a cancer doctor, and one day I'll insist on a DNAR!
pps this should be taught in schools!!
 

channa

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You always have the right to decline a treatment if it is against your wishes - general someone would do that if the treatment was futile or the side effects worse than the benefits. So imagine you have a chronic severe life limiting illness and you are in hospital with your family present. If you have a DNAR and you take a turn for the worse they can sit with you and hold your hand (well, they could pre Co19) but if you don't and you are not well enough to tell them to stop the on-call medical team will rush in, insist your family leave instantly (no goodbyes) do CPR (which often breaks ribs) electrocute you repeatedly and shove no end of sharp things in your arms or chest. That will be your last awareness. Your family will be traumatised even more. And IF you survive (you probably wont) you may live for a few weeks on ITU and still die. CPR was invented for people with acute cardiac insults. It works well with the cold water drowning scenario or an acute myocardial infarction associated arrhythmia. It doesn't work well if your normal lifespan is nearly over. So basically you have a chance to express your wishes, having heard how your current situation affects the chance of the treatment working, just like an operation, just that IF IT HAPPENS you wont have time to express your wishes.
ps I'm a cancer doctor, and one day I'll insist on a DNAR!
pps this should be taught in schools!!
Thank you, makes 100% sense
 

mistericeman

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Difficult subject for some mate....
BUT please please make sure your closest KNOW absolutely YOUR wishes...

My 80 year old Dad had a fall last year (August time)
Previously very fit and healthy he had rapidly developed balance issues and lost use of his, right arm.
Hospitalised directly after his fall it took many many tests/scans etc to eventually diagnose small cell lung cancer with accompanied paneoplastic Encephalitis... By Christmas time

Leading to very bad Dementia symptoms and not recognising most people...
I had to make the decision for him regarding DNR as well as decisions regarding his treatment/biopsies etc.

He died in February....

Leaving me (only child) to organise funeral etc with not a clue of his wishes.

The whole situation was doubly heartbreaking because I DIDN'T have a clue regarding his final wishes.

IF I could offer one bit of advice...
To ANYONE
it would be to HAVE the conversation (no matter HOW awkward and painful it is)
With those dearest to you so they can at least draw some comfort from the fact that THEY can at least deal with the aftermath in the way that you wished..

Whatever that is.

(apologies for the rather long post)

Good luck chap were all wishing you well.
 

channa

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Difficult subject for some mate....
BUT please please make sure your closest KNOW absolutely YOUR wishes...

My 80 year old Dad had a fall last year (August time)
Previously very fit and healthy he had rapidly developed balance issues and lost use of his, right arm.
Hospitalised directly after his fall it took many many tests/scans etc to eventually diagnose small cell lung cancer with accompanied paneoplastic Encephalitis... By Christmas time

Leading to very bad Dementia symptoms and not recognising most people...
I had to make the decision for him regarding DNR as well as decisions regarding his treatment/biopsies etc.

He died in February....

Leaving me (only child) to organise funeral etc with not a clue of his wishes.

The whole situation was doubly heartbreaking because I DIDN'T have a clue regarding his final wishes.

IF I could offer one bit of advice...
To ANYONE
it would be to HAVE the conversation (no matter HOW awkward and painful it is)
With those dearest to you so they can at least draw some comfort from the fact that THEY can at least deal with the aftermath in the way that you wished..

Whatever that is.

(apologies for the rather long post)

Good luck chap were all wishing you well.
I truly appreciate your comments @mistericeman and a good reminder to all of us to make clear our wishes come the time of our departure

I lost my father last year and thankfully my youngest brother took care of arrangements my head elsewhere.

I truly hope I haven’t triggered bad memories for people, that would never be my intention, I have a vested interest behind the questions and your post demonstrates perhaps we need to discuss taboo subjects within families and friends

Thank you everyone for your comments
 

trevskoda

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Andrew you are scaring the crap out of me, :eek: i had a stroke/3 small bleads in brain over ten years back when i joined here,i would not have wanted to be brought back a vegtable for my 3 mth old son to see or have the bother with,when the brain dies its all over anyway.
 

channa

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I think it only fair to explain why I asked the original questions

Firstly I have a very small almost non existent social circle and I consider a lot of people here my friends which explains perhaps why on occasion guilty of asking weird questions.

As most of you are aware, I am what is considered as ESRF which means end stage renal failure the last stage of chronic kidney disease, my options are dialysis which I do, and a possible kidney transplant recipient ( few hoops to jump through on that one)

I have chronic pancreatitis too, which flared last Christmas with an acute bout, I have lost 13 kg in weight well under 9 stone and for one reason or another suffering malnutrition

I had a ct scan recently following up one earlier in the year ,one or two shades on it which could be pancreatic cancer and here’s the rub, pancreatic cancer shows itself at quite an advanced stage , the further tests they can do similar to an endoscopy can also be inconclusive, good chance of another acute pancreatic session, and the consultant reluctant to proceed with the state of my general health. Another bout of acute pancreatitis would realistically finish me off. IF it is cancer then there is realistically no surgical intervention and the survival rate is dire. The radiologist on a positive note thinks it is scarring tissue rather than cancer but can’t give guarantees one way or the other.

So as you can see, we are all in a state of limbo,traumatic procedures to find out and if it is sinister limited options.

All this is academic unless I gain weight so I am taking nutrients to supplement natural appetite or lack of ,but so far with modest doses blood sugars have gone berserk and highly likely as part of the treatment I will have to start injecting insulin to control the blood sugars.thats a life change as so far I have not had diabetes my knackered pancreas is producing insulin and I take a drug which simulates the enzymes which extract nutrition from food

So perhaps understandable my renal consultant has broached the subject of the awkward questions, I consider myself extremely lucky due to covid he has returned from retirement to help out , spent 90 minutes this morning discussing outcomes and of interest managing the mental health impact ( on Michelle too) of what is happening . Our exchanges pretty straight but naturally respectful

Sorry for the long post but gives the background behind the questions
 

landoboguy

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One everyone forgets, make sure there is plenty beer for the p**s up :)

Good luck with everything Channa, I hope you get the points sorted that matter most to you, clearly. Great advice from the cancer doc part way up the thread too.

It a good thread you raised and no doubt will be stumbled upon and be useful to many
 

channa

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Andrew you are scaring the crap out of me, :eek: i had a stroke/3 small bleads in brain over ten years back when i joined here,i would not have wanted to be brought back a vegtable for my 3 mth old son to see or have the bother with,when the brain dies its all over anyway.
I agree Trev it’s the quality of life post trauma, and to an extent how insistent you are re resuscitation
 

Tookey

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Channa,

If you have heard everything that needs to be heard and said everything that needs to be said then after that all you have is time, unfortunately only you can predict whether that will be time well spent and then unfortunately it is only a guess

My sympathies and I hope you feel at ease with your final decision.
 

harrow

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I think it only fair to explain why I asked the original questions

Firstly I have a very small almost non existent social circle and I consider a lot of people here my friends which explains perhaps why on occasion guilty of asking weird questions.

As most of you are aware, I am what is considered as ESRF which means end stage renal failure the last stage of chronic kidney disease, my options are dialysis which I do, and a possible kidney transplant recipient ( few hoops to jump through on that one)

I have chronic pancreatitis too, which flared last Christmas with an acute bout, I have lost 13 kg in weight well under 9 stone and for one reason or another suffering malnutrition

I had a ct scan recently following up one earlier in the year ,one or two shades on it which could be pancreatic cancer and here’s the rub, pancreatic cancer shows itself at quite an advanced stage , the further tests they can do similar to an endoscopy can also be inconclusive, good chance of another acute pancreatic session, and the consultant reluctant to proceed with the state of my general health. Another bout of acute pancreatitis would realistically finish me off. IF it is cancer then there is realistically no surgical intervention and the survival rate is dire. The radiologist on a positive note thinks it is scarring tissue rather than cancer but can’t give guarantees one way or the other.

So as you can see, we are all in a state of limbo,traumatic procedures to find out and if it is sinister limited options.

All this is academic unless I gain weight so I am taking nutrients to supplement natural appetite or lack of ,but so far with modest doses blood sugars have gone berserk and highly likely as part of the treatment I will have to start injecting insulin to control the blood sugars.thats a life change as so far I have not had diabetes my knackered pancreas is producing insulin and I take a drug which simulates the enzymes which extract nutrition from food

So perhaps understandable my renal consultant has broached the subject of the awkward questions, I consider myself extremely lucky due to covid he has returned from retirement to help out , spent 90 minutes this morning discussing outcomes and of interest managing the mental health impact ( on Michelle too) of what is happening . Our exchanges pretty straight but naturally respectful

Sorry for the long post but gives the background behind the questions
Your falling apart boy, but we are all heading down a one way street to the campsite in the sky, for me cancer twice, we just have to roll with it, and get on with what we are lumbered with.

I lose weight but it keeps finding me again. :)
 

jeanette

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Andrew (I know I’m late with the reply) I had the “talk” years ago with my dad and my mam about what they wanted and what they wanted they got, we had to have the talk with my M/I/L a few years ago about the DNR and it is/ was the hardest talk we’ve had...but then we had the talk with our kids about what we wanted we got the usual ooh mam dad we don’t want to talk about it.. but we did and now they know what we want we don’t want if there is a chance that we won’t have quality of life for some reason then no we don’t want to be resuscitated..
 

yorkieowl

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Andy, I too had this discussion with my mam (and with her district nurse who was fantastic), my mam had various very serious illnesses, when at one point she had a blockage of the bowel, was operated on and was in the icu for quite a while before they finally got her breathing on her own again, as she had copd amongst everything else, they said she would be on oxygen for the rest of her life, with little chance of improvement. Anyway long story short after approx 2 years she was off it and lived another 20 ish years (with a very reasonable quality of life). She got where she had had enough and agreed with the DNR. Just before Xmas ‘14 she had a fall due to heart failure, they could not stabilise her and after many hours trying took myself and hubby aside and asked us what we wanted them to do if her heart stopped, (they didn’t want to distress her further), it was the hardest thing I ever had to do, even knowing it was the right (her) decision, so please do make sure your nearest and dearest know as they may have to live with the consequences. Mam died 6 days later very peacefully. Never give up hope though, and never sign the DNR until you are fully accepting of it, you and only you will know when you have had enough and cannot cope with the illnesses any more. Take care and I wish you all the best, it’s a horrible choice you have to make. x
 

yorkieowl

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Also thinking about it more. if you are asking others thoughts on it then I don’t think you are ready to accept DNR, you can always add it whenever you feel its the right thing FOR YOU, and I honestly believe you’ll know when that is.
 

REC

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Late on this post, so sorry it has come to this for you. Have you considered a Living Will also? My mum made one many years ago so that there was an expression of her wishes if it ever came to making decisions about her care. She also paid for her funeral so that we don't have to wonder what she wanted. We have done the same.
I have been involved in many DNR decisions with patients and their families over the years in Cancer nursing, and completely agree with the earlier post from nomis64. Our whole family have recently all discussed our wishes following the death of my father in law. It was difficult but death is part of life and if we know it has been considered, facing it does become easier and is definitely more bearable for our loved ones. Any decision you make is so much more rational when not in a crisis. I wish more people would talk about it. Thankfully, the medical profession are addressing this more than in the past. I hope you and the consultant come to a decision which you feel comfortable with. Thanks for sharing this, and raising awareness.
 

harrow

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Me and my wife asked the same question of my MIL, her reply was,

if I die of old age......
 

jagmanx

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Not being young
AND covid a possibility

I thought (Wrongly maybe) That if I got covid badly and needed a mechanical ventilator THEN
  • I would be stuck lying sedated with tubes in every known orifice
  • Unable to speak etc and never able to get off the ventilator !
THIS maybe not accurate re the ventilator i belive there are different forms but my decision remains given the 2 bulleted statements above
No thanks..PULL the plug

I have direct experience of my sister lying incapable for 8 years ! ( A brain injury)
As I wrote tubes everywhere..Not for me
Nida and I have discussed this !


A further experience of a friend (my age) who looked after his mother.
She was told to save her life they needed to amputate her leg
She said NO THANKS I am 90 plus no quality of life Bye Bye

Best wishes Andrew with your treatment and choices !
 
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