Disabled people were to be denied ventilators

[Moomin8]

www.dailypost.co.uk/news/north-wales-news/coronavirus-guidelines-u-turn-after-17992694

I have an autistic daughter in a care home and this made my blood run cold.

SinkGirl - they did a u-turn if you read the initial article - it did say kearning disabilities and autism would score high on the fraility score, but this has been clarified/reworded. But some posts here read like they support the position prior to the clarfication. I belong to quite a lot of SEND action groups and there was real concern about the previous wording. Lots of groups queried it.

I read the NICE guidelines as soon as I saw the MENCAP press release, and the guidelines didn’t say anything about LDs, ASD etc they only referenced the use of the CFS to determine whether critical care would be appropriate.

Does anyone have a screenshot of the wording as it was? Perhaps it had already been changed when I saw it but they had only just come out so unlikely.

There was indeed a huge reaction in the SEN groups I was in, that’s where I first saw it, but it was based on that mencap press release which I found absolutely shocking and scared a lot of people unnecessarily.

(Of course if I’m wrong and the original wording did mention those with LDs etc then I apologise)

The guidelines said that hospital staff should “assess all adults for frailty, irrespective of age and Covid-19 status” using the Clinical Frailty Scale (CFS), a nine-point frailty scoring system

That’s what the article says. It also says that those with LDs would score 7 on the CFS which is simply not true - without physical health issues they’d score 1 or 2 as the scale is for physical frailty (lack of independence in that context is different from having LDs as it’s about deteriorating health).

The best i can find is the nice info about their update and why the updated it
i can only presume they agreed the original wasnt quite right. www.nice.org.uk/news/article/nice-updates-rapid-covid-19-guideline-on-critical-care?utm_medium=social&utm_source=facebook&utm_campaign=covid19criticalcareupdate

It is a sad reality that many people just don't realise how aggressive and debilitating full ventilation is. The same with CPR

This is so true.

The average length of ventilation for Covid-19 is @ 8 days. Recovery takes a huge amount of physiological reserves and effort. I don’t think people understand what is involved.

If you have ever had a general anaesthetic, you know how terrible you feel afterwards? Well, other than the incision pain, that is the result of 30 - 60 mins sedated and ventilated. Now imagine how you’d feel after 8 - 21 DAYS.

@SinkGirl The problem is that recovering from ventilation takes an enormous amount of focused concentration, following instruction and co-operation. The fact is that some people with an LD will be unable to do that and the trauma of restraint and/or sedation will be overwhelming. Put that alongside research that is coming out of a 50% survival rate of those in critical care with Covid-19 and the clinical judgement starts to swing against aggressive treatment of some groups.

Please try to remember that you are talking about some loved ones, pps.

i can only presume they agreed the original wasnt quite right

I don’t agree. They updated it because there was a huge amount of misinformation following misinterpretation of the guidelines by the public.

The problem is that recovering from ventilation takes an enormous amount of focused concentration, following instruction and co-operation. The fact is that some people with an LD will be unable to do that and the trauma of restraint and/or sedation will be overwhelming. Put that alongside research that is coming out of a 50% survival rate of those in critical care with Covid-19 and the clinical judgement starts to swing against aggressive treatment of some groups.

In which case, as painful as it may be to consider, if a patient does not have the capacity to recover after ventilation then it makes little sense to ventilate them particularly when there are an insufficient number of ventilators. Putting a patient through such invasive treatment with little to no hope of recovery is not only unwise, it’s cruel to the patient and their loved ones.

I say this as a parent to two disabled children. If they simply could not recover following a treatment with limited availability, whereas others could and would die without it, I couldn’t put my children through that suffering (or the other family) unnecessarily.

The point is, it’s an individual decision based on an individual’s ability to survive the treatment and make a meaningful recovery. It’s not eugenics or an implication that someone with LDs / ND would be refused on that basis alone.

@SinkGirl I agree.

And it is terribly sad.

However, even when there is no shortage of critical care beds staff have to have those conversations with the next of kin of people who may not or are unlikely to recover from ventilation.

@Moomin8 - It is not logically reasonable to demand ventilation when it is clearly explained to the family that it will be futile. Of course, we understand that emotions can make people irrational and staff are kind in response but it doesn’t change the outcome. As a society we need to be better at dealing with and accepting death. As I see it, the lack of emotional preparedness for death means people suffer more at the end than they might otherwise.

It is not logically reasonable to demand ventilation when it is clearly explained to the family that it will be futile

Yes, I do completely understand this and of course a doctor will be objective about whether a treatment will benefit someone or not. Or whether it will actually make things harder for them.

As a society we need to be better at dealing with and accepting death.

I agree with this too 100%. I can honestly say the only reason I fear dying is because I have dependents who need me. If I were a lone person I wouldn't be worried about dying at all because it's part of life.

The idea of eugenics though is something that makes me sick. My 18 year old autistic daughter has her whole life ahead of her and she has grown into a lovely young woman who really enjoys life and also learns very effectively and has even won awards for the progress she has made.

It's not eugenics

Don't know how many times people have to explain this

Nobody is denying ventilators because they think old people or disabled people shouldn't be alive

They are denying a treatment that will cause unnecessary suffering and ultimately likely be futile. It would be cruel to put them through that with little chance of success.
Everything will be done on a case by case basis

This was not a case by case proposal. That is what already happens. This was a new proposal.

And in my own family, family members have been able to accept that no further treatment is the best option when this is explained, because it has been when the individual is clearly unwell.
Medical decisions are fine. Social decisions are not.

It's not eugenics

Don't know how many times people have to explain this

You are wasting your breath trying. 'Racist' used to be the insult of choice for anyone in this government when all we had to worry about was Brexit.

Now we have coronvirus everyone in the government is a Eugenicist.

What an unkind, unpleasant and blanket dismissive post about the genuine and deep concerns of some who are actually living this.

This was not a case by case proposal. That is what already happens. This was a new proposal.

It absolutely was not. Where is the evidence for this statement?

Of course the coronavirus guidelines are new, it’s a new illness.

The guidelines stated that clinicians should use the Clinical Frailty Scale to assess suitability for treatment, as they already do to make decisions about critical care.

Some people read the CFS and thought that healthy people with LDs / inability to be independent due to being ND or having a stable disability would place them high on the scale. That is not the case, because they are physically healthy and have difficulties with independence for other reasons, so NICE had to clarify their statement.

At no point did NICE suggest that patients who can’t live independently due to LDs or stable disability (eg not a progressive illness affecting multiple body systems, ie. frailty) should not receive treatment.

If you have any evidence to the contrary please share it. This is horrible scaremongering and has caused so much distress to people unnecessarily.

Throughout this pandemic I have seen so much misinformation shared as fact, particularly in SEN groups and the stress caused by it is immense.

Well said @SinkGirl

A quick google will shed light on how effective, or otherwise intubation is for each age group, and that's without Covid, sobering reading:

About 30 percent of patients ages 65 to 74 survive the hospitalization and return home; for 80- to 84-year-olds, the figure drops to about 20 percent; for over 90's it is about 15 percent.

It is not in any way eugenics, it is just a very sad reality. The medics ready to man the Nightingale Hospital have been warned to expect a death rate of up to 50%, as they are only taking the already very poorly, and ventilated patients.

I believe the % in Italy in the very elderly has been less than 10%. This is why other countries like Switzerland are asking everyone for advance directives, do you want to go to hospital to die, or die at home.

No-where have I seen anything directed towards disabled or SN patients.

This is more to do with CPR than ventilation but still an indicator of how things might develop over here:

According to a memo from the Regional Emergency Medical Services Council of New York City (NYC REMAC), paramedics are being told not to transport cardiac arrest patients to the hospital if they can not restart their heart and revive them in the field.

If an adult cardiac arrest patient cannot be revived on the scene, they will be pronounced dead by the EMS team, and a mortuary removal service will transport the body.

With hospital Emergency Departments clogged with the sick, the injured, and the worried well, there simply aren't enough resources available to devote to what is probably a lost cause.
And if the cardiac arrest patient is infected with the virus, doing a full `code' on them at the hospital will likely aerosolize their virus and could infect many others. Not only would a large portion of the Emergency Department become contaminated, so would the EMS rig that transported the patient, which would take both out of service for decontamination.

Unlike on TV and in the movies, most unwitnessed, out-of-hospital cardiac arrests don't survive. And many of those that are `revived' initially end up dying hours or days later. Even inside a hospital, a good outcome following a cardiac arrest is far from guaranteed.

BBC News, now on the website, from 2 April, from the BMA's perspective mainly - Coronavirus: Doctors face agonising life-death decisions.

@Baaaahhhhh Yes which is why many 90 year olds will have a DNA and few 65 year olds do. A 30% chance is still reasonably high.