Could have understood this wrong but..

[imamearcat]

I got a text from my cleaner, her elderly farther (80's) has health issues but lives at home with his wife. My cleaner helps care for them but I get the impression they are 'ok'. He had a call from the doctor and to explain his 'end of life care', basically saying if he gets Coronavirus, or anything else for that matter, over the coming months they will not admit him to hospital and they have asked them to sign an agreement that he will me 'made comfortable' but not resuscitated.

Is this a thing that's being done?? Have I got the wrong end of the stick and it's just something they would be done anyway? Can't stop thinking about it, just seems so wrong.

Our elderly NDN was given CPR after a heart attack - not his first. He later told me that the after-effects were so painful (presumably cracked or broken ribs), he wished they’d just let him die.

He did in fact die a few months later anyway.

For my mother, who was over 90 with dementia, it was agreed that there should be no resuscitation, and no hospital (a terrible place anyway for anyone with dementia) unless absolutely necessary, e.g. in the case of a 2nd broken hip. IMO it would have been verging on cruelty in her case to ‘strive to keep alive’. We agreed that she should have palliative care only.
In the event she went downhill and died quite quickly anyway, but it was a load off my mind that the agreement was in place.

We had this discussion in December regarding my mum, she had pneumonia and a bleed on the brain. My mum also has other complex health issues including a spinal problem that means she can’t walk hardly at all. They basically said they would put her on the high dependency unit but not intensive care if her condition didn’t improve. Thankfully it did!

I read today that ventilation is a pretty brutal treatment, described as being like torture. I had assumed a ventilator was just something like an oxygen mask, but if it's very invasive and painful I can see why doctors might gently suggest that very vulnerable patients might prefer to go with sedation instead.

I read this (below) earlier today, which made for very sobering reading. It's not just the elderly, it's all of us who will be assessed based on pre-existing conditions when it gets to the peak and medical professionals are having to prioritise those of us who will stand the best chance of recovery I don't envy those having to make those decisions at all.

https://www.bma.org.uk/media/2219/bma-covid-19-long-form-faqs.pdf

As a 'vulnerable' person with diabetes I have been self isolating at home for the past three weeks to try and lessen my chances of infection, but dh is still having to work as a key worker so there's still a risk.

It's very scary, but these decisions have to be made every day by medical professionals, it's just that we don't usually hear about it, and it's not during a pandemic when there simply aren't enough resources, or even effective treatments available for the virus . It seems to be down to luck/ your body's ability to fight the virus that allows people to survive.

My sister was on a ventilator last year - we were told that after a few days, your body can stop breathing on its own because of the ventilator doing the work

She had had to be intubated in an emergency and it had caused a lot of pain in her throat. Thankfully she only needed it for a week and is young

I think they really are just for urgent crisis, not a longer term solution

I'm all for DNR's and not sending people to hospital unnecessarily, but, as well as getting DNR boxes ticked, what I want to know is WHAT IS BEING DONE ABOUT PALLIATIVE CARE PLANNING?

There are very few people IMHO, who would be able to care for their nearest and dearest, dying at home, without some professional support.

Quite happy to die at home but would prefer it to be swift and painless, thanks.

The human race is the only living creature that appears to think that any life is better, regardless of the quality of life.
My lovely MIL insisted on a DNR when she was 91, she'd had a fall and broken her shoulder and hip although she recovered physically she became very nervous about going outside. She had full mental capacity and no illnesses but she knew her body was at the end of its life. She died at home a year later.

A few years ago my dad, in his late eighties, was resuscitated and was in an ICU for a few weeks. He lived a further eight months but his quality of life was very poor.

A proud man unable to self care to any degree.

I saw the frustration and humiliation he didn't want to convey but couldn't help doing so during those months.

I think this subject shouldn't be taboo.

Indeed Absolute my elderly mother has an advance care directive in place that says absolutely no ICU/ventilators etc.

She is following the stay at home advice but has made it clear to all of us that this is NOT to be done to her in any circumstances.

She is more afraid of what she would be left with than she is of dying.

My 82 year old dad is very independent and fit, normally does long walks each day etc. However he has made it very clear in the recent past that he would not want any intervention past Iv antibiotics should he become ill, he has specified no artificial feeding through a tube or anything. he has a signed document stating his wishes. It is quite reassuring to know he has thought about this and mad his wishes clear.

I do not.
Your mother is a brave and sensible woman, this is a conversation that needs to be aired, not swept under the carpet. More honest conversations need to be had. There's no point pretending that some medical interventions will save lives.
Life may be extended but to what end?

Is this just elderly frail people (for whom I can understand treating might not be right, I remember thinking hat when my nan was in her 90s) or are they really going to deny treatment to non frail people in their 40s with asthma/high bmi/diabetes?

I mean thats a huge leap

@catscatscatseverywhere As far as I remember off the top of my head there are a lot of possible after effects of ventilation, particularly long term.
Things like muscle wastage of the respiratory muscles, major swallowing issues, tracheal damage, injury from the suctioning required during ventilation(when a catheter is passed into the airway to remove secretions), issues with speech and psychological effects

When my mum was dying (ten years ago now) her phrase was ‘no heroics’. She knew it was a matter of time this year or next year and although she really didn’t wNt to go she didn’t want resuscitation either. I think that as long as the whole discussion is handled well, and not as a piece of admin, then there are people who would agree with about their own end of life care.

Mind you, this was a blunt woman who replied to a nurse, who asked how she saw herself being at the end of her life, with the single word - “dead”.

Its horrible but it needs to be discussed.
Choices of priority will need to be made.
My 68 yr old active, healthy Mum has said that if she got it and she was on a ventilator when a child was brought in without question she should be taken off it and it should be given to a child.
I think that is the right decision. Much as i Iove my mum i have experienced the death of a child. My third son died suddenly. Nothing in the world is more horrific and to me the choice is clear. Me or someone else will have to lose their much loved slightly older relative so someone else does not have to lose their child.

It's done on likelihood of benefitting. This is based on frailty scores. If you need help with personal care, can't walk outside the house etc then these are the kinds of issues that would be considered. (If you are in a wheelchair in your 20s post an accident etc that is not considered the same before anyone raises that.)

What about someone in their early 50s, say, with osteoarthritis that will soon be dealt with by a knee replacement, but who for the moment can't walk without an aid? Are they at risk of being written off as officially 'frail' because they have to tick the box saying they can't walk by themself?

That original algorithm was terrifying in the way it made no allowance for things with other causes than overall frailty. Even though I can completely understand the need for rationing, and the idea of judging the likeliness to benefit, I'm also still afraid of being judged unfit for treatment based on a mistake. It's not actually the thought of no ventilator that worries me most (at that point things are so dire anyway) so much as the thought of not being judged worthy of bringing to hospital for oxygen, even. That's what seems to be implied by "please sign this so we don't have to call you an ambulance" in the Welsh GPs' letter - not just no ventilation. I don't want a "computer says no" situation to happen because of mobility problems that are nothing to do with being frail.

@eeeyoresmiles it does not include someone with osteoarthritis at 50. We'd be writing off a significant proportion of the population

Why is your cleaner telling you private medical information about her other customers?

Read the OP

It's a conversation about an important topic not a write off/ forgone conclusion. Older people shouldn't be offended to be asked and most are not at all.

But how can a person on the receiving end of this conversation feel anything other than written off, that's what I can't wrap my head around. Just because certain facts exist around this question (I mean the futility of a CPR attempt for people who are too frail to survive it) doesn't mean the medical profession should expect a person to readily agree and effectively sign what must feel like their own death warrant. Especially not when it's a question of resources. It just seems so cold, especially that bit in the letter the Welsh practice sent out that said, 'you certainly won't get a ventilator bed', if I'd been a recipient of that letter it would have made me feel utterly worthless.

If you'll permit me, I do sometimes feel that the medical profession somewhat overestimates what a patient and their family can realistically be expected to accept. I went through this recently when my father was terminally ill and the question of a DNR order came up; the whole thing was handled very tactlessly imho and caused a lot of upset. The futility of a DNR attempt for some people isn't something I'm questioning, but given what I've seen/heard/read, I do think some of the medical profession adopt an attitude of 'it's a no-brainer, why is this patient being so difficult about it?' and if this is handled insensitively it can cause massive additional upset in an already heartbreaking situation.

Grim times.

I think in normal times no of course it wouldn't include people like that. My worry is about what might happen when everything is so overwhelmed it's all rushed and has to be simplified. Then people with long or short term disabilities might get automatically categorised as frail quite crudely, not through malice but due to lack of resources. That's the rather frightening thought, especially at 2am.

It is grim. It does make sense though. I think we are all being a bit 'snowflake' ish if we take offence at this kind of thing.

People with diabetes etc are unlikely to survive if they are at the point of needing a ventilator anyway, they will just live another two weeks on a ventilator and then die anyway. This is exactly what is happening in Italy according to the reports by doctors I have seen.

Wingedharpy my sister is a hospice nurse and they have increased their bed numbers and she has been doing a lot of training for other medical professionals.

Woke what you say makes sense, hard as it is

I also wonder about palliative care at home, is there any advice?