Extraodinary measures

[Crackerofdoom]

Apologies that this is kind of a TAAT but I don't want to hijack a thread about a loved one who may be dying.

Given the current situation, I am growing increasingly concerned that older patients will feel morally obliged to refuse extraordinary measures, including ventilation.

DM is 79 and in really good health with no medical conditions but I have already heard her talk about having had a good innings etc.

I know for a fact that she is someone who would insist that others be treated before her and if she feels there is a shortage of medical supplies, she would refuse care for herself in case she needed it.

Because people are understandably not allowed visitors, they won't have family to support them or advocate for them.

Of course, if someone wants to refuse care, that should be totally respected, but is there a mechanism to ensure that elderly people don't feel obliged to turn down treatment?

I know this is one of the concerns about euthanasia - people choosing it because they don't want to be a burden on their loved ones

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I don't know the answer to this one either. I hadn't thought about it until now but my parents would probably do the same... Especially my dad who has repeatedly said that if he were ever to get a degenerative disease he would just end it. Neither of them want to suffer or struggle or be a burden. I imagine a large proportion of their generation will feel similarly.

The sad fact also is that it may not even be an option provided to them and it will be the doctors having to make decisions as to who gets ventilation.

Maybe this is making people face the reality of extraordinary measures though- even the word indicates it really shouldn’t be the norm. CPR is devastating to the body- often craving ribs etc. If someone is old and unwell I seriously don’t think they should have this done- to keep them alive and poorly for a few months in order to satisfy their relatives. Too many old and frail people are kept alive despite it really NOT being the best thing for them and their quality of life is poor and they cost the NHS and the care facilities a lot of money as most families cannot provide care themselves for their relatives. Sadly this situation is shining a light on this practice and showing it to be badly thought out and not sustainable. Not now. And neither should it have been previously, sadly.

This is the kind of difficult conversation its worth having with loved ones, irrespective of corona. Everyone is different. My mum said she would want to be resuscitated.

Ventilation is a very invasive process, and can keep people alive without helping them get better. It is not in anyone's best interest to be ventilated unless they are strong and fit enough to regain good health.

Even without the Coronavirus epidemic they do not ventilate people with underlying health conditions that would be unlikely to have a good quality of life should they survive. Unless you have ever been in the situation with a loved one or work in the medical profession I can understand people not knowing this as it's something that is not really talked about. Anyone with a terminal or life limiting diagnosis would just be made comfortable. I really hope that people start listening and stay home so the nhs is not overwhelmed and so people who would normally receive extraordinary measures still will have that chance. It is definitely a conversation we should all be having with our loved ones not just now but in the future too.

I appreciate that people with underlying conditions may be able to make a balanced decision based on their general health.

My concern is more for the otherwise healthy older people who you would expect to respond well to ventilation feeling a moral obligation to refuse it in order to save resources for someone younger.

Often by the time a patient requires ventilation (regardless of pre existing medical issues) they are very unwell. Mortality rates are higher than 80 % for these patients. As previous posters have said the damage to the body during CPR etc can be horrendous. It is very sad that we are having to have these discussions and thoughts on such a scale.

Doctors make the decisions whether to ventilate, resuscitate etc. I doubt patients will be given any choice in the matter.

Thing is, even if they were previously fit and healthy, the fact that they need CPR or ventilation suggests they are now very very poorly.
As a pp said, CPR is horrendous. It's so traumatic. In hospital only around 50% of cases survive cpr. And of that, only 25% make it home or back to "normal". I doubt that 25% is people 70+ with no respiratory complications but I can't be sure.
People expect cpr because we see it on telly all the time and most of the time they survive which is just untrue. And telly does t show how horrific it is.

I think though everyone has a right, no one is being pressured. Just asked to really consider it and communicate that to medics so they do the right thing if the time comes, as like you say, there will be no one there to advocate for them.

My nephew is a senior paramedic. CPR is a traumatic procedure that rarely brings anyone back in his experience. Ventilation is not a cure, it just buys time and is very unpleasant to experience

Often by the time a patient requires ventilation (regardless of pre existing medical issues) they are very unwell. Mortality rates are higher than 80 % for these patients.

Simply not true. In the U.K. the ITU mortality figure is around 32%. Of those, 30% are patients who have needed cardiopulmonary resuscitation prior to admission. Twenty-seven percent of all deaths occurs after discharge from the ICU, suggesting sometimes patients are discharged too soon.
Rapid detection and response to warning signs of unexpected deterioration improves outcomes. Elective admissions from theatres fare better than non- elective admissions from wards:That seems obvious though.

Yes very easy to dismiss over seventies as not worth eating resources on and futile to even try - even when majority of ITU admissions are over seventies currently. That undoubtedly applies pressure on the older members of society to stand aside. Very sad when that is down to planning failures by the government.

Of course, if someone wants to refuse care, that should be totally respected, but is there a mechanism to ensure that elderly people don't feel obliged to turn down treatment?

By having an open and honest decision before they're in a situation where they can no longer communicate their wishes? That goes for all of us.

I'm terms of consent to treatment then if a patient can no longer communicate their wishes and doesn't have an advance decision in place then doctors have to act in the person's best interests. If they can still communicate then consent is only valid if they have the ability to understand, evaluate, retain and communicate the info relevant to their decision. If they can't do those things they don't have capacity and it's back to the doctors.

When someone refuses treatment medics make sure they have capacity to do so. They'll ask why and if there's anything that would change the decision. They don't just go "oh, ok" and immediately abandon the person.

I wouldn't automatically assume someone saying they've had a good innings was refusing treatment because they feel a "burden", although that may be one factor in a complex decision. Feeling that you've had a good life and if it came to it you don't want to be subjected to extreme measures bearing a potentially terrible toll (and which could leave you alive but without the things that make you feel you have a life worth living) is quite a natural response. People are allowed to make that decision.

Some people want life for as long as they can have it and will ask doctors to continue every intervention still medically appropriate. Others have different priorities and refuse interventions so they can die at home or without feeling their body has been invaded by medics.

Also, asking for as much as it takes to buy as long as possible even if it means dying in hospital instead of at home is a different deal when you would be in isolation rather than with someone there holding your hand.

Ultimately I think these are nuanced decisions for anyone.

The Compassion in Dying website has useful information if you're having these discussions or wanted to look at making/communicating advance decisions.

Cherry, are your numbers referring to the usual ITU patients, or specifically those with Covid19? I think Mum is referring to Covid patients.

No one wants to refuse older people treatment.

Yes usual survival rates for U.K.
Nobody is sure yet of U.K. survival rates for ITU.

Certainly it doesn’t look good from emerging figures and calls are being made in some areas by GPs to over 80s to get DNACPRs discussed and signed off. An 80 year old is unlikely to have a positive outcome from transfer to ITU but that’s about futility and preferred place of death, in the event their heart stops. It’s only ITU services and oxygen that can’t be provided in the community.

Thanks all.
I had the impression that the survival rates for ventilation for healthy older people without pre-existing conditions would be higher.

I tried to raise it with DM today but I don't know if I made much headway. If she feels that she doesn't want extraordinary measures, I can accept that, but her concern about taking away scarce resources still concerns me.

I think when you're young(er), fit and healthy, it is difficult to get your head around someone else not wanting to cling on to life with every fibre of their being.

SOME, certainly not all, older people have often seen what others go through as a result of serious damaging health events, and sometimes view death as the preferred option.

I'm all for DNR discussions and instructions etc but what I really want to know is beside throwing up massive temporary hospitals and the call for ventilators:
WHAT ARE WE DOING ABOUT PALLIATIVE CARE?

There are not many people who could undertake adequate care of a dying loved one at home, without some professional input.

That's my concern, Harpy.
DF had wonderful care in a hospice. We couldn't have done even half as well without them.

It cuts both ways OP

my late father was a HCP and he said he saw 1000s of cases where elderly people didn’t want to suffer extraordinary measures but their children pressured them.

I don’t think we can do anything except respect the wishes of the patient, but also the patient should be allowed to express them without any other family members in the room.

I’m also wondering about palliative care. When dad was dying the doctors refused to accept it and I had to fight for end of life care. He was like a corpse in his bed, it was horrendous.

After this, I Hope everyone over 18 is encouraged to give instructions, amendable, just like with organ donation.

Any ideas who we could ask about palliative care?

I know that my local hospice is now closed to inpatients, other than those whose care can be managed by healthcare assistants rather than trained nurses (I am NOT suggesting HCA's are untrained amateurs before I get jumped on!).

Hospice patients who require symptomatic management are being directed to the local hospital.

Whether this is just a local issue, due to staff sickness or redeployment, I don't know.

I'm in the "extremely vulnerable" group, and while I don't currently need a free food parcel (though I'm very grateful for the offer), I would feel some reassurance knowing that if the end is nigh, it will be peaceful, painless and swift!

I spoke of my daughter, a GP, about palliation this evening as her senior partner had been at a CCG meeting discussing exactly this.
She said there were plans for palliative care via GPs in the community with GPS being central to delivery but that most care would be remote. If someone was alone and dying they would get practical hands on care but for most people, other members of the household will be supported to provide care.

Nobody should be left uncomfortable was the key message but the way care was provided would change.

My statistic was now ITU specific. It was patients ventilated with Covid 19.
Ventilated patients due to trauma do have a much better rate of recovery