DNR

[username8348]

My mum had her annual Dementia review with the GP recently and the Dr asked me if she would want CPR.

I said that she'd never discussed it or expressed a preference so yes resuscitate her if necessary.

The Dr said to discuss it with my siblings. I don't understand why. Can anyone enlighten me on why we need to discuss it please.

She doesn't have any medical conditions apart from the dementia.

But it's very unlikely that it would continue like that should be resuscitated. Resuscitation is stopping someone from dying their natural death. Particularly when they get to this age.
the likely outcome would be that your mum would be very unwell, maybe brain damaged, unable to enjoy anything, confused or maybe violent, bed bound and incontinent. For years.
I can't see how anyone couldnt think it was preferable for a quick death when the person is still relatively fit abd independent rather than the very protracted death many people now suffer.
I think of much modern medical practice as not extending life but prolonging death.

the conversation with her doesn't have to be upsetting (and actually, if she does still have capacity for some decisions then the conversation should be with her). It can start off as a very general...'if you got really poorly would you want to go into hospital or would you prefer that the GP treated you at home' and take it from there. If there's no way on earth she'd want to go to hospital then that answers the question - CPR would be utterly futile without the full support of intensive care. This is how I started the conversation with my cognitively impaired granny, and when she caught us a bit by surprise a fortnight later, it was a huge relief to know that she wasn't going to be put through a completely futile resuscitation attempt and she died peacefully in bed. (to start the conversation I think invented a friend who's parent had become really sick and needed ICU and I think I said something like 'not sure I'd want all that for myself Granny, would do you think?...').

It may be worth asking the GP just how healthy she really is and perhaps if there's anything they can see now that's prompted them to raise the question at this point - it's not uncommon to not have a long list of diagnoses on paper, but to actually have knackered kidneys, evidence of heart disease, etc (and she clearly has a neurodegenerative condition). Is there anything else in the background that just hasn't been given a label yet (dementia is often a small vessel disease, and as well as there being small vessels in the brain that can become damaged, they're in all the other body systems too). As part of the normal ageing process we lose reserve, so even a perfectly 'healthy' octogenarian, for example, will be using every single nephron in their kidneys, myocyte in their heart, brain cell, etc. They function absolutely fine until they break their hip/get pneumonia and then the wheels fall off in some style. An average 50 or 60 year old will still have 'spare' cells they can lose to a major illness/insult before it becomes a big problem.

If someone has a very sudden cardiac arrest and receives immediate good quality CPR (from friends/family) and gets defibrillated quickly then their chance of surviving will often be relatively high. They will have accumulated some brain damage and other organ-system damage during the 'downtime' though even with good CPR, but if they have enough reserve that might not be a huge problem. They will require a stay in hospital (which is disorientating for patients with dementia at the best of times) and they will require invasive management which can be pretty unpleasant but it may be possible to recover to a reasonable quality of life though and is the right decision for some people.

If a cardiac arrest is the end result of 'whole body failure' (eg. due to an infection) then that is more likely to be unrecoverable and is a much bigger ordeal if they do survive it. Getting a pulse back is only the beginning and recovering to hospital discharge may be a much bigger effort for them. A more common outcome in this scenario is that they will survive the initial arrest but become adrenaline dependent. Every time the adrenaline wears off the heart stops again, but carrying on the adrenaline causes more damage to the other organs.

A last thought (that applies to all-comers), is that if someone does have a cardiac arrest the very best chance of survival comes after receiving bystander CPR (+/- defibrillation) before paramedics arrive. So if you/she/your siblings do agree that resuscitation is the right thing for her, then it's definitely worth whoever she lives with having done a basic life support course so they can confidently do CPR to give her the best chance of surviving reasonably in-tact (that really applies to everyone, not just people with older relatives).

Resuscitation isn't always the wrong thing for older folk, but it is absolutely nothing like what you see on the telly and it's really important for people to understand the implications of that decision, what the likely course would be if someone survives the initial insult, etc. It's probably worth going back to the GP once you/your mum/your siblings have spoken to each other and maybe finding out a bit more about what their thoughts are too (and possibly asking about a ReSPECT form or whatever local equivalent they use... which documents preferences about medical care including, but not limited to CPR).

In the kindest way OP, if your mum was to suffer a cardiac arrest to the point where CPR was needed your mum may be able to survive it, but she would not recover from it.

CPR is bone breakingly painful, can cause a host of infections and long term complications. The best you could hope for is a extended stay in hospital, her dementia systems would take a sharp drop which is very common even after a simple bout of being unwell. She could be scared and in pain while not being bale to follow what is happening to her.

Yes, you could extend her life past her natural end, but she will not have anywhere near the quality of life she has now. You would be extending the suffering.

Please talk to your family and the Doctor.

My own mum has Alzheimer's and COPD , we have discussed it at length with her medical team and she has a RESPECT form in place, that shows CRP is not to be attempted, she is to be allowed to die, peacefully at home as i know that even being in hospital with the strangers and machines would be terrifying for her.
Its not to say we are washing our hands of her, she will be given any treatment to help with pain and symptoms, but we will not be medially extending her life.

My mum would not want to be in a care home, with no memory of her family, and unable to walk, swallow or speak, and that is what Alzheimer's will eventually do to her. I can only hope that her body will give out before her mind goes completely. She is going to die, its only a matter of when, and i would rather she died as my mum, knowing how much she is loved.

I would never, ever want to be resuscitated. It is brutal (& almost certainly won't work anyway). Personally, I think every adult should automatically be DNR, but I would certainly ensure it was clearly noted for anyone who was close to me and couldn't decide for themselves.

Having supported my mum through alzheimer's, I am pleased we put in place a DNR. The last 4 years of her life were dreadful and I wouldn't want to be resuscitated to endure more of it if it was me. Early stages though are different.

Early stages though are different

No, @Notsandwiches that's not a good way to approach this at all.

Early stage dementia invariably leads to late stage dementia.

Resuscitation in the early stage would be unbearably cruel. The dementia is always going to get worse.

I would talk to sibs and then just tell docs your mum has a good quality of life and no reason to put dnr in place now. You are best placed to advocate.

Second everything in this post - well worded and informative

Likely it wouldn't work and it's up to the medical team regardless.

I would much rather have lost my nanna to a heart attack in the early stages than what she has had to live through going into mid and late stages. Early stage dementia has only one outcome, a horrific decline and horrendous life waiting to die. Far better someone passes away before they reach that stage.

it all depends on her quality of life if you think she has a good quality of life still then I wouldn't sign it but there's a lot of risk with CPR like broken ribs etc

We thought the same, but then more than one medical professional made it very clear that she wound NOT have the same quality of life if she was resuscitated. Ribs almost certainly would be broken, possibly puncturing a lung, unlikely to fully recover, and might lead to a significant worsening of dementia. Remember it would only be attempted if she stopped breathing or had had a cardiac arrest - so at that point she isn't in the best of health as you describe she is now.
It's a horrible conversation to have with siblings, but you really never know when it might be needed, too late to discuss it then. I've been through the same but firmly stand by the DNAR decision.

You need to discuss with your siblings because you need to be agreed now what to do if your mum has a heart attack, stroke, breaks her hip and gets an infection or has a UTI. Not in the heat of the moment when distress and emotions are running at their highest.

robust health in the elderly and frail can disappear in a moment, it’s scary how quickly it happens.

If your mum has a family history of dementia, she’s seen her relatives deteriorate to this disease, then I imagine she might have already made that decision for you. I can’t imagine many people who have seen relatives with late stage dementia opt to be resuscitated if they have the same diagnosis. Find that form, it might save you having to make a decision or having to convince siblings one way or another.

Can I check that you understand that DNR does not in any way mean “do not treat?”

If your mum for example developed a chest infection, she WOULD get antibiotics and be treated. If your mum developed diabetes, she would receive full treatment, etc, etc.

DNR means that if her heart stopped, it would not be restarted, that’s all.

And I’m sorry but you describing resuscitation as “quite traumatic “ is an appallingly naive statement that indicates that you have absolutely no idea what resuscitation involves.

It is utterly brutal with not just rib fractures but breast bone can break too. Think about that. Every breath, every movement causing agonising pain.
This then leads to chest infection then pneumonia as deep breathing and coughing is too painful. It’s impossible to clear the chest.

Bed bound making pneumonia even more a potential risk… especially if the brain has been starved of oxygen during the resuscitation process.
Tubes and wires everywhere. Antibiotic treatment for the inevitable pneumonia leading to stomach upsets and diarrhoea. Leading to sores, dehydration and with the pain from the ribs and chest, impossible to move to a commode or toilet…
The horror just goes on and on.
The likelihood of recovery is extremely slim. The likelihood of her returning to the mum you know after this is vanishing.

Please do the research.

I do understand that comment comes across as very crass but it is unfortunately the truth. Your mother is physically well now but once diagnosed the life expectancy of someone with dementia isnt great and frankly it's a langerous, undignified death. For example forgetting how to communicate or eat or toilet herself etc getting constant infections etc the body weakens quickly and people are usually concerned about quality rather than quantity of years.
So to put someone through CPR which would take months of hospital stays and physio to recover from isnt fair on someone with dementia, how do you explain it to them, imagine the pain and fear it would cause. I have seen it been performed on young men and it is extremely violent and I heard the man in agony for weeks on the ward afterwards, unable to breathe or eat without pain. Imagine a fully grown adult bouncing on your mums chest, ribs broken, bruising, potentially punctured lungs...
Most medical professionals wouldnt choose cpr for their elderly family members cause it isnt worth crushing a person's ribs on the 10% chance you will be able to revive them and then what quality of life after?
It's also worth noting that doctors do not have to perform CPR just because a family wants it, the doctor has to choose what is the best course of action for the patient.

I really don't appreciate that comment at all. My mother has a very active life, she plays bowls and tennis, goes to church, events and away on trips.

She's healthy and quite independent. I'm 'keeping someone like that alive' because she has a decent standard of lif

Has your Mum ever needed resuscitation? I'm guessing not. The DNR only comes into play if their heart stops/ they stop breathing, after resuscitation she almost certainly wouldn't have the same quality of life as she does now. Please be clear what this discussion is about.

Please be clear what this discussion is about.

Don't be so condescending. I thought the quoted poster was asking why I wanted my mother alive now.

I'm perfectly aware of what the discussion is about.

@username8348 I'm sorry, it wasn't intending to be condescending. But your comment I thought the quoted poster was asking why I wanted my mother alive now. perfectly illustrates my point: your mother NOW isn't who she will be if her heart stops, needs to be resuscitated, and the impact that will have on her future quality of life. I have been through this, I know how hard it is, and the medics/friends making me face up to the harsh reality were absolutely right and I will be forever grateful to them for helping me see clearly. I fully understand what an awful decision it is to make.

You don't understand what I mean.

I thought the poster was saying that my mum lacks capacity therefore why are we keeping her alive now. Not after CPR - now. At this present time, with no health problems, because she has dementia.

@Greybeardy has put this so eloquently.

Resus is a good first aid measure if the heart is the first thing to go wrong but not often successful if the heart is the last thing to go wrong.

It is often traumatic and patients often do not get back to their baseline (how they were before).

If a natural gentle death is what you are after then not having resus would be a way to get this. It does not stop any other medical treatment taking place and only refers to this one thing if the heart stops.

I wouldn't choose resus for either me or my parents. I'd prefer a natural death and for the focus of my life to be quality over quantity.

Good luck with your decision making. But do talk with your siblings and also your mum as far as she is able.

@username8348 ah ok no sorry I hadn't read it like that. People with dementia most certainly can live with a quality of life, albeit a different quality of life to previously. But not after resuscitation. I was concerned that you would advocate resuscitation believing she would have the same quality of life as before heart failure and all the risks that go alongside CPR. A DNR only comes into play when it is needed, which is why I am struggling with your responses. Anyway, I've said my piece so will leave it at that.

That’s very much the exception though. Only 7-8% of patients survive to discharge, and plenty of the ones who do survive are discharged bedbound and brain-damaged to nursing homes.

If a healthy young person has a cardiac arrest, CPR has less than a 30% success rate. The percentage then decreases for the person to go on and live after 5 years. Elderly people's chances are much lower. CpR itself can cause broken ribs and internal injuries leading to time in ICU. I'd really think about putting anyone through that.

The doctor wants you to discuss it with your siblings because you gave the wrong answer.

They are hoping that your siblings will see things differently to you. In any case, isn't it right that you should ask your siblings opinion on such a big issue seeing as she is their mum too?

No, that's not what happened. I asked the Dr to explain what she meant and told her that my mother hadn't mentioned a preference. She said to discuss it with my siblings which I have done.

They want her to have CPR.