Why is this not national news? DNRs being forced on ASD, LD patients

[calpolatdawn]

www.google.com/amp/s/www.bbc.co.uk/news/amp/uk-england-somerset-52217868 www.hsj.co.uk/coronavirus/unprecedented-number-of-dnr-orders-for-learning-disabilities-patients/7027480.article horrendous human rights abuses and disability discrimination. Where is the outrage? where are the tv journalists grilling the evil individuals responsible here? where are the think pieces written by self titled experts? where is the reassurance for families with loved ones in care that it hasnt been slipped in? nowhere because nobody cares, im sick of the way ASD adults held in seculsions cells wasnt apparently worthy any real news coverage either, when it comes to "diversity ' the most vulnerable of us all come dead last and im sick of, AIBU?

Absolutely agree Very. But the reality is that such decisions are not made routinely in clinical practice despite what the tabloid press would have you believe.

Then this is what you should be emphasising rather than summing nobody knows the realities of DNR.

My mother died of terminal cancer. I know the realities of what resuscitation would have involved. However I also know from experience ASD and LDs should not be treated as anything other than spectrum conditions which can manifest and affect people's quality of life very differently.

Assuming.

‘However I also know from experience ASD and LDs should not be treated as anything other than spectrum conditions which can manifest and affect people's quality of life very differently.’

For the very last time Very, despite what the tabloids tell you they’re not. But as you seem intent on peddling ill informed, scaremongering bollocks as fact, then I’ll leave you to it

DH works in a gp surgery and a large part of his role recently has been putting in place end of life plans for all local care home residents. This involves DNRs and also discussing no hospitalisation if they get covid-19. Because it's not just the act of resuscitation that can damage the body irreparably but also ventilation, the impact of moving someone frail to hospital etc. Many of those who survive covid-19 on a ventilator will suffer permanent lung damage and scarring. So it's about quality of life and what's in a patient's best interest. Not imposing unilateral death orders.

And again, there is no choice outside of refusing intervention. You or your LPA can refuse resuscitation but you or your LPA cannot insist on it. That is true whether you are 21 or 91, neuro typical or not, disabled or able bodied. The decision to resuscitate, or not, is a clinical one.

Autism alone is not sufficient grounds to withhold lifesaving treatment.
An assessment using the Clinical Frailty Score should be used to guide any such decisions for older people and those with co-morbidities

There was a judicial review challenge to NICE around the original Covid19 guidance which was allegedly discriminatory. The guidance has since been changed. In light of the proposed legal challenge, NICE agreed to amend the guideline so that CFS should not be used in younger people, people with stable long term disabilities, learning disabilities, autism or cerebral palsy. Instead individualised assessment is recommended in all cases where the CFS is not appropriate

For the very last time Very, despite what the tabloids tell you they’re not. But as you seem intent on peddling ill informed, scaremongering bollocks as fact, then I’ll leave you to it

I'm really not.

Sadly you seem intent on emphasising how brutal resuscitation is. A fact nobody is disputing.

Unfortunately this lends absolutely no credence to your assertion that the news report the OP cited was entirely erroneous. If anything this emphasis in your posts of the brutality of resuscitation could lead to a mistrust of what you say as it betrays a bias towards choosing DNR under any circumstances.

You really are

I think there are many misconceptions about DNACPR forms. They do not mean “no treatment”, they mean no intervention if the patient were to suffer a cardiac arrest. Cardiopulmonary resuscitation is a traumatic and often damaging thing to do to a person- they are not usually successful, even in previously healthy individuals who arrest in the best possible place (I.e. acute hospital setting). When successful, they are frequently associated with significant harm (e.g. broken bones, organ injury and hypoxia brain injury). This is not something that is to be entered into lightly, especially if there are other co-morbidities which make CPR unlikely to be successful. I recognise that not every person with LD or ASD will have co-morbidities and having LD or ASD should never lead to an automatic DNACPR.

In addition, whilst best practice states that the patient’s view should be sought and taken into account (or if they lack capacity, their next of kin or power of attorney) CPR is not ultimately something that a HCP can be compelled to do to you- though you can decline CPR. Therefore, patients are not required to consent to a DNACPR form and there is no such thing as “being forced to consent to a DNACPR form”. Obviously, patients/their relatives can question a DNACPR by contacting the Dr (or organisation) who completed the form and/or ask for a second opinion.

Thank you for the clarity, Cherry. This is the information that is relevant to the thread and the article in question. Not post after post emotively banging on about how brutal resuscitation is. The dispute is over people with ASD and LDs not being assessed individually with regards to treatment viability.

And not being assessed as an individual does offer less choice since the choice to agree to DNR has been taken from them and has being made by others for them. Knowing this can make people feel less valued as human beings. As their life is seen as not worth saving whereas somebody else's might.

@veryverystupid

Did your nearest and dearest ask to borrow a pen recently? Go home, love.

I think the guidance was rushed out but was amended quickly when challenged. It’s not happening now - or certainly shouldn’t be.

Rather than post after post ‘emotively banging on’ about how autism and LD has allegedly been used as a stand alone criteria for instigating DNACPR orders?

No choice to agree to. That’s not because of a learning disability. It’s simply a clinical decision and always has been.

Superskink, Rude!

Lemon, the first Civid guidance was found to be discriminatory!

Cherry, but if I understand correctly, people can refuse intervention? If that decision is not made by the patient it is made be somebody else. Which means the patient has not had the opportunity to come to that decision themselves which is what I mean by less choice.

Covid

In addition, whilst best practice states that the patient’s view should be sought and taken into account (or if they lack capacity, their next of kin or power of attorney) CPR is not ultimately something that a HCP can be compelled to do to you- though you can decline CPR. Therefore, patients are not required to consent to a DNACPR form and there is no such thing as “being forced to consent to a DNACPR form”. Obviously, patients/their relatives can question a DNACPR by contacting the Dr (or organisation) who completed the form and/or ask for a second opinion.

Don't you see, that making assumptions over capacity or treatment viability based solely on having a spectrum condition is grossly discriminatory? It was quite right that the original COVID guidance was found to be discriminatory and was changed. The very fact that this happened does bely a certain amount of institutional prejudice regarding disabilities. This is why people are upset.

My mum had a massive stroke ten years ago. She's 87, weighs six stone, and is completely paralysed down one side. She also has other, age related conditions alongside and has been admitted to hospital half a dozen times in the last year. Three times I've been with her when the doctor has done his initial ward round, and each time he (yes, it's always been a he) has asked her what she would want. Each time she's said that she wants to be resuscitated. It's been explained to her that it would probably break every rib, and that should it be succesful, her brain would likely be even more damaged. But she still asks for it to be done.

Should she ever be in that position, they will not attempt it, I know. And I wouldn't want them to. I don't want any doctor put in the position of hearing and feeling her ribs break under their hands. She is clearly quite unable to understand what she is asking of them, and that in the (almost impossible) event that it 'worked' her life would be immeasurably worse than it is now.

It has to be the doctor's decision.

Well said Cherry . The wording was bad . It was noticed ,especially by several charities and it was sorted.

Someone listened.

Very yes. And in how many cases was the ‘guidance’ implemented before it was amended? What was the timescale between a hastily written and issued guidance document being disseminated and it being amended in light of the criticism? How long did it take for amendments to be completed?
And in the meantime,
how many people with autism and learning difficulties but with NO other co morbidities have died because of a refusal to initiate CPR since the beginning of the pandemic?
Thousands?
Hundreds?
Dozens?
A few?
None?

It has to be the doctor's decision

Why ask at all, then? It is cruel, if the response makes absolutely no difference to the decision making process. If the question is asked the response should be taken into consideration. People with disabilities should have equal rights to an opinion and equal consideration should be given to their views.

And in how many cases was the ‘guidance’ implemented before it was amended?

Hopefully not too many. But however many is too many. If people were not outraged over this occurrence, if the mistake was not acknowledged it would be far more worrying. Any attempt to try and minimise injustice that occurred only goes to perpetuate the same kind of injustice elsewhere. So I think people need to be careful to fully acknowledge that the initial discriminatory COVID guidance was actually rolled out before it was challenged instead of trying to rewrite history.

‘Why ask at all, then?’

Because asking the question allows an HCP the opportunity to discuss the procedure. To allay the myths and misconceptions around CPR. To inform patients and families about the prospects of success. To allow people to express their fears. To allow families the opportunity to exchange thoughts and concerns.
Best practice recommends a collaborative approach. And the reality is that when people understand that CPR doesn’t work like it does on Eastenders, they’re more inclined to make an informed decision themselves about their wishes.

Best practice recommends a collaborative approach

But it is not truly collaborative if the patient's response is not actually taken into consideration.

And the reality is that when people understand that CPR doesn’t work like it does on Eastenders, they’re more inclined to make an informed decision themselves about their wishes.

Sounds like an opportunity to absolve professionals of any personal feelings of guilt if the only 'informed' decision is considered to be to refuse intervention. Surely it would be kinder to not ask patients to take the trouble to consider the question if their response makes no difference?