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?

many discussion about DNR will have been initiated long ago and maybe reviewed due to the virus. still it's a private matter between a dr and his patients.

The whole lockdown is a decision to prioritise certain lives over others. This is just another symptom of the decision to lock down.

Indirect deaths as a result of the lockdown will eventually dwarf covid deaths

There are a lot of people with learning disabilities or who are autistic who also have comorbid conditions that would make resuscitation less likely to succeed and more likely to cause a significant deterioration of quality of life if it did.

Which may be one reason for the increase, even if they aren't all legitimate. People just may not have thought about it before this point and want to make sure they aren't rushing to consider it when it's actually relevant.

Also doing it now gives relatives a chance to object in cases of doubt, whereas if the decision was made on the spur of the moment it would be too late to challenge it by seeking a second opinion.

But as others have said, it isn't refusing normal treatment anyway. It's just deciding not to try and use a brutal and often unsuccessful method to revive someone who is already effectively dead (depending how one defines it, and the exact circumstances).

Imagine how much more traumatising it would be after the event and its sequelae if you couldn't understand what had happened to you, have any therapy that would help, or even communicate to someone that you hated every second of your life (even if you could before). There are worse things than death.

Regardless of the validity in choosing DNR for a variety of reasons I think the choice should be primarily with the patient and then their next of kin. What is horrific about this is this decision being made for patients and their families. Doctors taking a blanket design to essentially refuse to treat patients for the simple reason of ASD or learning disabilities is obviously very wrong. It assumes the long term affects would effect these patents equally detrimentally when these are spectrum conditions with have a huge variation in the manifestation and severity of different needs. When health care providers ignore this salient fact it seriously erodes trust families, who in many cases, will regularly rely on health services for ongoing support.

It was all over the news. It prompted Matt Hancock to say blanket things like this are unacceptable

Making a blanket decision on that basis would be unlawful. But in any individual case, how do outsiders know if that's what's happening, or if the doctor is making the best choice on behalf of the patient?

Yes there are more DNRs being registered at the moment. But they aren't all spurious; this situation has been a trigger to consider it.

Relatives may be unwilling to accept that their child etc has no realistic chance of survival, when that is very clear to medical staff; that's why it isn't up to them. Especially if they've put so much effort already into raising them; much more than the average parent with a typically developing child who becomes relatively independent at some point.

Relatives may be unwilling to accept that their child etc has no realistic chance of survival, when that is very clear to medical staff; that's why it isn't up to them

But ASD or Learning Disabilities should not be a reason for extrapolating there is 'no realistic chance of survival' like a severe heart condition or terminal cancer maybe.

This is not actually happening. I have asked MN to delete the thread.

Bullshit.

DNR is a humane way to end suffering, regardless of whether you're NT not.

Having your heart restarted is called 'being brought back', which is deeply misleading. You don't come back - blood starts re-circulating in a brain-damaged, terrified wreck in pain, most of the time. Depending how long you've been dead for, the damage is mostly unfixable.

It's horrible.

This is not actually happening. I have asked MN to delete the thread.

If it has been reported in the press surely it is better to link to the evidence showing that the reports are wrong rather than just delete the whole thread. As the press articles are still retrievable.

Having your heart restarted is called 'being brought back', which is deeply misleading. You don't come back - blood starts re-circulating in a brain-damaged, terrified wreck in pain, most of the time. Depending how long you've been dead for, the damage is mostly unfixable.

But if this treatment is made available for neurotypical people it should be equally made available to non neurotypical people if their particular neurology is one that does not affect their life expectancy. Since people's neurology is hugely individual, assumptions should not be made by others, especially strangers, on how it affects an individual's life quality.

Its bloody disgraceful that this is still happening, OP. I share your anger.

For those saying it was in the news a month ago, well...it is still happening and it should still be in the news!

Disabled people really are still an afterthought, if they're even thought of at all, for many.

How many ribs are fractured during a typical resuscitation attempt?
What happens to those broken ribs if they shatter? Which organs do they puncture?
What percentage if resuscitation attempts involve a patient vomiting the contents of their stomach up and then aspirating the contents into their lungs?
What % of resuscitation attempts are successful ( i.e normal sinus rhythm restored) in an otherwise ‘healthy’ adult? How do those figures vary when co morbidities are underlying?
What % of patients who are successfully resuscitated are left with catastrophic brain injuries?

Anyone?

*The whole lockdown is a decision to prioritise certain lives over others. This is just another symptom of the decision to lock down.

Indirect deaths as a result of the lockdown will eventually dwarf covid deaths*

Breathtakingly ignorant post.

How do those figures vary when co morbidities are underlying?

Not all people with ASD and LDs have co morbidities and not all co-morbities will have the same effects on life quality subsequent to resuscitation.

Veryvery at no point did I suggest that they do.

But the question does infer it, Lemon. A statistic grouping all co morbidities together would be meaningless.

Huge misconception around DNACPR.

Joint statement makes it clear that it is always a decision about an individual and no blanket orders are to be used.
The decision is made by clinicians and always has been. They should discuss with patients or, if appropriate, their families but there is no ‘giving consent’. It is not the patient or family who make any decisions but their views should be discussed and recorded.
There is no requirement to agree to it. Just as a doctor might decide offering antibiotics for a cold wouldn’t be in your best interest, so they decide not to offer resuscitation.

The grounds for not resuscitating are twofold - either futility or a decision made by a patient to refuse consent for such intervention. Most resuscitation attempts do not work -even in an acute hospital setting. Sometimes a natural (but not premature) death is better than dying on a trolley in a busy emergency department.

The DNACPR is only about cardiopulmonary resuscitation, if the person’s heart stops. It is not suggestive that no active treatment should be pursued.

DNACPR is not euthanasia or ending things. It is not intervening in a natural process. There should not be a judgement about the quality of life for someone with a learning disability and there should be no automatic DNACPR unless co-morbidities make it unlikely to succeed.

It ‘infers’ nothing of the sort Very. Do some research. Come back when you know the figures.

Veryvery, lose the silly scaremongering shit.

#bullshit bangdown

Lemon The answers to those questions would not affect my belief that health professionals, who do not closely know an individual, should not be basing a DNR decision purely on whether a patient has ASD or LDs. It would be a decision based on gross assumptions over how a spectrum condition might affect a person, who they may never have seen before, individually.

Veryvery, lose the silly scaremongering shit.

It is not scaremongering. All I have said is blanket decisions on healthcare should not be based on whether a person has the spectrum conditions of ASD or LDs or not. That is basically believing in treating people with these conditions as the individuals they are.

No one (or their advocate) is pushed into agreeing to a DNAR decision simply on the basis of learning disabilities. It just doesn’t happen.

At my surgery we have called all our patients in the LD register, to check they are OK and have everything they need.

There are more DNARs being done at the moment because we are in the middle of a pandemic. Someone with terminal cancer, or multiple morbidities and age 90, for example, may not have got around to thinking about it. But now they will. Same as people are making more wills at the moment.

Before being outraged, you need to understand what DNAR means. It doesn’t mean you won’t get admitted to hospital, it doesn’t mean you won’t get oxygen, to doesn’t mean you won’t get an ITU bed (although people can, if they choose, opt out of these things). It means that at the moment your heart stops, or you stop breathing, you will not be subjected to chest compressions. Up until that point, everything will be done as it would be for someone without a DNAR form.

It means that when you reach the final moments, you will be peaceful , not battered.

I’ve done CPR many times and it’s brutal.

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.
And this, along with every other DNACPR thread illustrates the immense lack of knowledge about CPR, what it actually is and what it involves.
And people need to know the brutal reality of CPR before claiming to be experts.

I’ve done CPR many times and it’s brutal.

I don't think anyone is questioning that. The dispute is over people with ASD and LDs and their families being offered less choice with regard to DNR.