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.

I don’t think that anyone is disputing that CPR or attempted CPR has benefit to some. I’m living proof that it does, and at this point I have never been approached about the potential for DNR even though I am in advanced heart failure and have an assessment coming up with a view to going on to the transplant list. But I’m relatively young and still living a more or less normal life as far as it goes.

But the statistics for surviving a cardiac arrest are approximately 5% out of hospital, between 10/15% in hospital. So the reality is that resuscitation is more likely not to work, in which case, the person who is dying anyway and will soon have a very undignified death due to their dementia, will be physically shattered by an experience which they were unlikely to survive. And if they survive it they will potentially be left with complications, fractured/broken ribs, pneumonia, punctured lungs, something which in the mostly fit are things that are overcome in time, but in someone who is elderly and already declining does that really benefit anyone? Added to which there is a real possibility of brain damage after cardiac arrest, so CPR is likely to contribute to their decline.

There is a time to die, and we’re all going there.

Sometimes we need to allow nature to take its course.

In my case there are treatments to treat my heart failure. Subsequent to my cardiac arrest I had an ICD fitted and had other procedures to enhance my quality of life. I knew the transplant was in my future but I’m fortunate in that it’s taken five years to head down that road.

But there is no cure for dementia. The mother has 0 capacity from what OP has said. Who are they really keeping someone like that alive for? It certainly isn’t for the patient.

We agreed to a DNR, it's actually called ReSPECT now - recommended summary plan for emergency care and treatment and this is actually a much more robust document.

I will definitely look into this with your siblings. My father had dementia and his quality of life was declining rapidly. It was much kinder to let him go in that way then to put him through anything as traumatic as CPR when his quality of life was only going to decline further.

We also had this for my mother who had MND for obvious reasons .

If your mother is in very good health, it is unlikely that this would even take place until her health had declined so it is not unreasonable to delay your decision at this stage I would imagine.

@HowMuchOfYourHeart

Who are they really keeping someone like that alive for? It certainly isn’t 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 life.

My dad had a terminal cancer diagnosis when he had a heart attack. I wish that my uncle had let my dad pass peacefully instead of calling paramedics who then pulled him out of his bed and did CPR and rushed him to hospital to formally die there. It would have been nicer to have been able to give him a cuddle and let him go gently. We knew he was going to die within 2-3years, we just didn’t know that it was going to be that day.

my dad had had a heart attack when I was a young child, 30 years before, and whilst he was saved by cpr then he had always said that he hoped he eventually died of a heart attack because it was not a bad way to go.

The problem is a lot of people think cpr works like it does on casualty on tv
they put the pads on shock them then they are jump started back to life and sat having a cup of tea 5 minutes later

the reality is on the older person they break numerous ribs and the possibility of further brain damage due to lack of oxygen to the brain whilst the heart stopped . It’s a brutal process that many don’t recover from and are left in a far worse condition

It sounds like your mum is doing really well atm OP. Can you discuss the issue with her? Often if you know her wishes it will make decisions so much easier for you and your siblings. As a side note, and presuming she still has capacity atm, have you / your siblings got POA for health and finance? If not please arrange this asap. It makes a huge difference to enabling any hospital discharges etc later down the road.

We already have POA arranged. I wouldn't be able to discuss it with her as I think she'd find it quite upsetting. She also doesn't really have capacity.

She's great physically and can take care of her needs, she also knows how to get places but finds holding a conversation difficult.

She did leave instructions for what she wanted should she get dementia as it runs in the family. So I'll have to try and dig that out and see if she mentions anything.

My nan who had no underlying health issues apart from old age and a tenancy for falls was given CRP while in hospital.

She was heavily brain damaged by the time she came back due to the loss of oxygen while her body was without oxygen.

Luckily she was able to spend the rest of her time heavily medicated and never had to consciously struggle with the brain damage.

I'm no expert but my takeaway was that resuscitation isn't straightforward as people get older and at my mother's request I have solemnly promised her I will instruct DNR (my mum is in excellent health but in her 70s and in no way wants to risk living with brain damage at the end of her life).

My grandad was resuscitated, it made his dementia worse. He can't remember anyone or anything or do anything he sits in front of the TV all day everyday. My grandma and grandad agreed on a DNR but my grandma changed her mind. Now she's struggling to care for him but she says she would rather have him here then not have him at all because she can't imagine sitting on her own. He has no quality of life and he was purely brought back because of my grandma. I love my grandma to pieces and I understand her emotions she just loves him so much and can't imagine life without him but I know my grandad wouldn't want to be alive like this. Everyone's circumstances are different, your mum sounds very active and still has a good quality of life. However when I've been to the doctors with my gran for years she lied to them about how bad my grandad was and a lot of people do this, and like I said a lack of oxygen can make dementia worse if they bring your mum back she might not be the same person so it's why the doctor will have asked. It's very hard to put your emotions aside and make decisions like this, it's not an easy thing ❤️

She won’t be able to take care of her physical needs if she has a cardiac arrest and ends up with broken ribs and a punctured lung though. Added to which the complications from potential pneumonia and then further brain damage.

I do know it’s upsetting to think like that OP, but the fact is that she’s enjoying her life now. But you know that she’s declining. If it gets to the point that she has a cardiac arrest then the chances she is already going to be in poor health, it’s not likely to be the case that she’ll keel over on the tennis court or during a coffee morning.

You and I can tolerate painful procedures for the promise of future benefit. I’m not sure this is true for someone with severe cognitive impairment.

When your mum's dementia reaches the later stages, you'll see that an earlier, peaceful death would have been preferable.

I would never resuscitate someone who had a degenerative and terminal brain disease.

Quite apart from that, CPR is really brutal, and very unlikely to succeed anyway.

Don't put your mum through this. I'm surprised that your doctor didn't advise against it.

I was asked if my Mum who has dementia would want to have CPR if necessary and I said definitely yes, because she has a good quality of life.

I did think about her suffering oxygen deprivation and possible brain damage but assumed that this was quite rare. I never considered the longer term injuries that can occur following CPR such as broken ribs, or other trauma as I didn't really think about them. As a lay person you don't really know this do you??

I've also agreed to drugs to help with the dementia so her side effects aren't as bad. She lives in a care home, is warm, fed and watered and mixes with others and does activities six days a week like baking, making decorations, making lemonade, etc, etc. I don't feel like her life is over by any means. Maybe I am being selfish, I don't know. She is 88 and she can't remember what she's done that day or eaten but she knows the names of me, my partner and the dog and is capable of having a conversation with four or five sentences and recognises the other dementia residents and also the faces of the staff who she sees reguarly. She can ask me how someone she knows and what I am having for tea. She can't walk unaided without a frame and isn't encouraged to and she is catheter dependant but doesn't seem worried by any of this, but I know that's part of dementia, lack of awareness. How can someone judge the value of a life? I really don't know the answer to this.

Definitely try and find that paperwork OP, does her solicitor have a copy? If she has sorted out POA and written instructions I strongly suspect t her wishes regarding cpr are there. Make sure you have a copy of the POA as in acute incidences hospitals will need to see it quickly so you can make decisions regarding treatment.

She's great physically and can take care of her needs, she also knows how to get places but finds holding a conversation difficult

That's what she's like now, OP.
I promise you that in two years, she will have deteriorated very severely.

Dementia is a terrible disease which causes patients to lose the ability to walk, talk coherently, feed themselves, wash themselves, control their bowels and bladder.

It also causes profound personality changes.

I urge you to find out more about end stage dementia, and what it looks like.

Dementia is relentless. It always, always gets much, much worse.

Hickory - I don't think you are being selfish, but perhaps naive to the procedure and likely outcome of CPR. One thing to bear in mind though is doctors will make what they feel is the right decision for your mum at the time regardless of your wishes (although these will be taken into account).

It's great that your mum has a good quality of life and is physically healthy now. But that's not really the point when it comes to DNR.

Resuscitation is only in question if the heart stops. If the heart stops, the person is no longer physically healthy. It will have stopped beating for a reason.

The heart can be re-started, but there's a long and painful recovery period where a person needs to be able to participate in the process of rehabilitation.

In someone with dementia, they will not ever get back to the place where something stopped their heart. A brain with dementia is already shrinking, and any time without oxygen during resuscitation will hasten the progression of the disease.

So the question isn't "does my mum have a good quality of life now?". If something causes her heart to stop, do you try everything to get her back knowing that a) there will be pain, and b) she won't have the same quality of life that she had before something made her heart stop?

I'd urge you to speak with a medical professional about the effects of resucitation on an 88 year old with dementia who can't walk unaided and is catheterised.

I think you have a rose tinted view of the process.

The amount of brain damage she'll have if the resucitation is successful will mean she will be nothing like how she is now. And the physical damage to a frailer body will also be pretty brutal.

Dementia gets worse, not better, I'd want my mum to be long gone before the end stages come around.

Have a look on the health opa form and see if she mentions it there, resuscitation only really works in a hospital setting depending on the cause, it's a medical decision but family are consulted out of courtesy and the patients wishes.

There comes a time when it's kinder to let nature take its course and allow someone to die rather than intervening (in a brutal way) to try and keep them alive. For me death would definitely be preferable to the ongoing and often horrific decline of dementia.

Best case scenario she'd wake up ventilated in ITU. For somebody with dementia they will likely never leave hospital. She would die after weeks in hospital, it would be horrendous, terrifying and totally undignified for her.

I would never agree to resuscitation for an elderly person. Especially one with dementia. It's brutal either way a low chance of a good outcome.

DNR is not writing her off completely. She will still receive other medical treatment. It's literally about re starting the heart if it stops. Please don't do it to your mum.

It’d be a definite No for me. I had POA for an elderly relative and in my experience it’s really only to make relatives feel like they've got some input. Just a cursory nod that you agree with what the DRs decide. So if it came to it, they would make the call not family in my experience.

My friend survived a heart attack a couple of years ago. She was late 50’s, Her husband was with her, he’s 6’5 big strong chap. Under instruction from the 999 people he performed chest compressions while a neighbour ran for the village defibrillator. He says it was brutal how hard they were telling him to push. He felt her ribs crack.
She did recover, but she had 3 weeks incubated in intensive care. It was a good 6mths before she was ‘back to normal’ and she still has lung issues. Thankfully doesn’t seem to have any brain issues despite being without oxygen for so long.
It’s not something I’d want an elderly lady put through.

Perhaps try to understand what it involves and when it might be required and what it would achieve even if it works and how likely it is to succeed. If someone has a good quality of life and requires resus because of a relatively 'reversible' medical event then all the good. Footballers and defibs...

If someone has poor quality of life and needs resus because of cardiovascular or other damage that will remain after resus then the HCPs and patient are both being put through the grimmest of processes for an unlikely outcome that temporarily delays the return of the medical events that led to the crash in the first place - broken ribs and all that for little benefit.

I'm reminded of a probably apocryphal survey of US geriactic medics whose patients expect 'all stops to be pulled out' and who expect to be sued by the families of the deceased if they don't. Most medics don't want a medicalised death nor repeated resus attempts.