DNR (trigger warning)

[cjt110]

I'm at a bit of a loss.

My Dad's Dad (GF) has dementia. For years he's been confused and has gradually declined.

He's in a care home and doesn't recognise anyone.

My Dad doesn't visit as he finds it too painful and I suppose to him, his Dad as he knew him has gone.

The home have contacted GFs next of kin - Dads Mum (they separated years ago) - and suggested due to his failing health, they ought to consider a DNR.

My Dad is shattered. He never cries and is in pieces. He and his siblings, plus Mum, agree its the kindest way although Dad feels it's like passing a death sentence.

So I have a few things I need advice or experiences on.

1. What basis do professionals suggest a DNR? I'm assuming it's not an approach taken lightly and therefore it's the best way forward?
2. What are the practicalities? Unless a sudden incident occurs, I assume Dad will be informed so he has the ability to see his Dad?
3. Will they nurse GF in a palliative care environment as opposed to resuscitate if required?

I feel very out of my depth and don't know how best to approach and support my Dad.

In an elderly person, a resuscitation attempt is extremely likely to fail. The depictions on television are nothing like reality and it's a very brutal process and so undignified.

A dnar doesn't mean that he won't receive care and treatment for illnesses, just that, in the event of a sudden collapse, resus attempts won't be made and he will be allowed to die a natural death. In my experience, this is the kindest and most humane approach.

I'm a nurse and I've worked in care homes that have been lax in end of life planning and have had to attempt resus several times on elderly residents. It wasn't good for anyone involved, least of all the resident.

It sounds as though the care home are on the ball in suggesting this and I think it's absolutely the right thing to do.

There’s some useful information here.
compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/dnar-forms/

DNR is suggested when someone has a terminal illness or a low quality of life that won’t change. Essentially, DNR doesn’t mean no treatment, it just means that the team wouldn’t do emergency CPR if things went downhill. Some people reach a point in their lives when they realise they wouldn’t want resuscitation, especially if their quality of life has declined. It’s not in any way a death sentence, it’s more letting nature take its course and not fighting.

It won’t affect his treatment or care at all, it would only change how much the medics would do if he needed Resuscitation.

Sorry you’re in this position.

Thank you for your replies.

I know very little about DNAR (I mean... who actually does unless needed). It does seem the kindest way to GF but doesn't stop it being any less upsetting for those involved on the decision making process.

I feel so much for my Dad. He's been through the mill over the past few years without going into detail. I'm worried about his MHealth which, current situation aside, isn't at its best

It is not just adults it can apply to anyone. It can also be removed at anytime. Ds1 had it briefly attached to his notes. It is not easy and you should fully understand the doctors logic behind it. If you feel coercion then you can say no I want another opinion.

Do you think that, due to your dad not visiting, his emotions are based on an old image of the condition he's in, rather than the more accurate current reality?

If he's still picturing his dad as he used to be, it's no wonder he's taking this harder than others. Do you think he might be amenable to going to see him before Christmas, or having a more detailed chat with someone who does visit on a more regular basis?

One elderly relative had a DNR put on him 2 or 3 years before he eventually died. It was a bit of a shock at the time but it was absolutely the right decision and in the end he died in circumstances where he couldn't have been resuscitated anyway.

Hi op. There is a DNR in place for my dad, Alzheimer’s, doesn’t know who I am etc , I’m his court appointed deputy He still receives care, two hospital stays over the last 10 months, for infectious, flu jabs and regular doctors visits. It does mean though, if he had a heart attack, he wouldn’t be resuscitated. The doctor who explained it to me said the likelihood of dad surviving something like that would be incredibly slim and would cause a huge amount of distress but a collapse of any tyle would mean dad would be treated to make him comfortable but not better if that makes sense.

A DNACPR just means that in the event of a person going into cardiac arrest ie they stop breathing and their heart stops beating, staff will not start chest compressions to try and restart the heart. To be blunt, the person has already died and will be allowed to remain in that state. Resus is a brutal procedure, tubes put down their throat, ribs will be broken, chances are a needle will have to be drilled into a bone to deliver drugs and there is such a minute chance that it will work and, in your grandfathers case, brain damage is almost inevitable.
It does not mean that treatment of any illness or health conditions he has is withheld.

Sorry to be so graphic but I feel that tv programmes ,in particular , give such a false impression of CPR and it’s important that informed decisions are made for real people.
for you and your family at this difficult time.

A DNR is common for people over a certain age. It’s not the home wanting to condemn him to death!

Elderly people have more brittle bones than the young. CPR is likely to break ribs etc. An elderly person could have had a sudden collapse and be allowed to pass with dignity. Or the same situation, be stripped half naked, ribs broken, defib used, rushed to hospital and died anyway. A positive outcome is less likely. DNRs are just for resuscitation, they are not refusing other treatment.

You haven’t said how old your grandad is, but I suspect the issue is around dignity in death, should it happen, rather than neglect/condemning him. My gran had one for about a decade! Many other health scares, pneumonia treated etc, it just excludes recuscitation.

My dad was a bit like yours with his mum, my gran. We kind of made him go and see her...not frogmarched but just said we were going and he was coming.

BTW when I get to a certain age I’m having a DNR tattood on my chest for dignity in dying purposes.

Both my parents have DNARs as they would be unlikely to make any kind of meaningful recovery if they went into cardiac or respiratory arrest, and would rather make a dignified exit. We also have an agreement (I have PoA for both, only dad has capacity currently) that we don't pursue any investigations or medications that don't have a very immediate effect on mums health.

Basically if anyone's heart were to stop beating in the community, their chance of getting to hospital, having their heart restarted, and making a good enough recovery to get out of hospital again is less than 5%. Factor in frailty, comorbities etc and for the elderly this will be much lower compared to a young fit person.

All it is saying is, resuscitation will likely be futile so don't put them through it. You still get treatments for infections etc and can go to hospital for extra care if needed. It's not a death sentence, it is just saying if you die (as in your heart stops beating) then no one will try to reverse your death.

I don't really have much feeling about it. Without going into detail, my Dad isn't my father - although he has been in my life since I was 4. I have very few memories of his father and certainly haven't seen him for over a decade. My concern lies with my Dad, and his family. I have compassion of course but am not emotionally involved really.

I have no real opinion on DNR's - It was my Dad who said he felt like they were agreeing to a death sentence.

I know with a clear head, that it is the kindest and "best" outcome. I haven't spoken to my Dad in detail as it's too painful for him at the moment.

There are some really good leaflets on DNAR and some good info online. Maybe you could point him in that direction rather than saying it yourself as this way it won’t seem like you’re agreeing or siding with the home or anything. As others have said, it’s really about giving people dignity in death, there are options within a DNAR that mean it can be suited to all situations. The reality of CPR on an elderly frail person, I mean I wouldn’t wish it on my worst enemy. It really is the kindest thing you could do for a person. I am also going to research getting a DNAR tattoo across my chest when I’m older

That said it’s never an easy decision. I really feel for you and your Dad

My Dad had alzheimer's, in the late stages of his illness we had DNR in place.

Basically our thinking was that he was in the final stages of a terminal illness, he was never going to get better, he already had a death sentence in effect. Every time he had to go into hospital he was bewildered and frightened. The idea that he might die being 'worked on' surrounded by people trying to revive him, rather than being able to slip away peacefully was really not an option he had been through enough indignity and distress.

When the time came he died very peacefully in his sleep from pneumonia. It would have been incredibly cruel to force him to live artificially to the very last second that life could be maintained when he was never going to get better.

It is dreadfully sad, but it is not your Dad who has passed a death sentence, it is the illness. DNR is making the inevitable as easy and gentle as possible.
It is a hard decision (and I have had to make it a second time for my Mum) but I truly believe it is the kindest thing in the circumstances.
for your Dad

Sorry, to be clear, my Dad, his siblings and his Mum all consent to it but my Dad still feels upset and distressed.

As has previously been said, resuscitation is a violent intervention and not as shown on TV. It is kinder to let someone with end stage dementia to slip away. Even if they did survive resuscitation, they would be in a much worse condition afterwards, they probably wouldn’t survive for long.
I am speaking from experience and know how hard this is to accept.

So, how do I comfort my Dad? I genuinely don't know what to do. He was at home alone last night when he was called... Mum was away. I shot down there to check in with him.. He was sad, clearly had been crying and sat he appreciated me going down but he wanted to be alone. I, of course, respect this and after making sure he was OK, went home.

I've checked in with him a few times by text and he's "OK"

When your Grandad's heart stops beating, he will have died. In a frail elderly person, resuscitation stands basically no chance of success.

What you really want to do is sit by his bedside as he peacefully passes away.

DNAR is at heart, a medical decision - the home have contacted your Dad to let him know it is the right time to do it, not for him to make the decision.

He is dying, but because of the dementia, not any DNAR decisions that may be made.

All the DNAR is doing is making sure he has dignity when it is his time.

My dad refused to put a DNR in place for my mum when she was very ill and dying of cancer.

It was the worst decision to try to keep her alive and not let her go when she would have gone (8 months before she actually died). the extra months she got weren't worth it, were incredibly painful, undignified and it just prolonged the inevitable. I wish he had allowed it and she had peacefully passed months before. I really really do. I still have nightmares about how she died.

I don't know if that will help or not, it's an alternative perspective - but for me, if I was ever in the position to choose or not to put a DNR, I would do it - the medics wouldn't propose it if they didn't think it was needed.

And to echo what was said about dignity, my mum had none at the end. None. It was awful.

In terms of supporting your Dad, it wound v much like he's dealt with this by avoidance and it had now come v hard.

He hasn't seen him for 3 years but doesn't want him to die, even though he found his GF's life too hard for him to see.

I'd try to make him think about whether his GF would want to live like this, whether he actually has any quality of life now - and remember that the love and the memories will live for ever.