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?

Which takes us back to the ‘emotive banging on’ about the futility of CPR which actually forms the basis of DNACPR discussions in a significant percentage of cases where patients have underlying co morbidities.
But that’s all irrelevant apparently

Lemon, the key point I was making was qualified by whether the patient's response actually made a difference. Good practice would suggest it should. That is it should affect the decisions made. Otherwise there is no point in asking for it, apart from providing an opportunity to allay professional's personal feelings of guilt... if this is the case it would be unfair and selfish to ask a patient to consider the question. If patient responses do actually make a difference people with learning disabilities and ASD should have an equal right to a make response as patients who don't have these conditions.

Yes, anyone with capacity to consent can make an advance directive saying they do not wish treatment above a certain level. That directive must be made in accordance with the guidance and must be considered.

Anyone with capacity can appoint and register a lasting power of attorney, who can act if the person loses capacity. The LPA can, in discussion, say they do not feel that resuscitation would be appropriate.

Other than that, nobody else can decide to refuse treatment on someone’s behalf. Any disagreement would have to go to the Court of Protection for a ruling.

A clinical team makes a decision around whether resuscitation is likely to be successful and is in someone’s best interest. The best practice is the person should be involved and have the reasons discussed but they have no right of veto. If a person lacks capacity the LPA or close family should be involved in conversation but have no right to actually make the decision. It is a medical decision best made in consultation with the patient.

Relationships between clinicians and patients should be honest. Nobody should decide to withhold information because they think it might be unkind. A patient has a right to understand. The discussion should allay fears about what it actually means and the ceiling of care should be agreed. People have a right to know, to plan, to have questions answered. It might not change the outcome but allows understanding.
It’s rare a very elderly person with end stage disease wants anything but a peaceful and comfortable death in a familiar environment. That is the intention of a DNACPR. It allows for people to be cared for in their preferred place of death. Far too many frightened, uncomfortable elderly people are moved to die in hospital instead of in their homes. It should be the right care, at the right time, in the right place. That shouldn’t mean transferring the dying to hospitals because we’re afraid to let people go.

Legoandloldolls i couldn't agree more .

Yes someone with learning disability or autism should be managed in exactly the same way with same legislative framework applicable.

@Oly4 It was all over the news. It prompted Matt Hancock to say blanket things like this are unacceptable

Oh well I'll sleep well now you've highlighted that chestnut of reassurance 😑

I have strong feelings about CPR after watching my father die barbarically at the hands of well meaning paramedics.
He was already disabled after having 5 CVAs. When he had his sixth at home, we knew he had gone.
Yet 999 convinced my Dsister and DMum to start CPR. They knew it was futile but continued for 20 mins until I got there.
We all knew he had gone and despite having the 999 operator yelling at us we stopped CPR and held his hands and told him we loved him.
Then the paramedics arrived, berated us for stopping, pushed us aside and re-started CPR on his dead body.
We heard his ribs break, we watched the shocks shake his body.
We begged them to stop.
We apologised to him but still they carried on.
The sooner this country loses its macho /hero attitude to CPR the better.
It is horrific and has a terrible "success" rate.
And a success is anyone who survives, even if that "survived life" is spent being nursed in bed forever, unable to recognise loved ones.

Very few go back to being Fabrice Mwambo.
I'm only 50. I'm healthy. I dont want CPR.

@Mintychoc1

This IS happening- this thread alone aside from the dozens of news articles, public statements from charitable organisations and some politicians clearly shows this.

It's been widely reported and discussed in many forums where many have provided accounts of this happening.

@Supersimkin2

• 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.*

Nowhere near as horrible as being denied the choice

I think it's disingenuous to say "DNACPR isn't about active treatment" when actually the experience for a lot of people with a learning disability is being refused treatment solely because of this.

To the people saying the tabloids have stirred up a storm about this - no, this has been a issue that people with learning disabilities and their families/carers have being campaigning about for many years. The work was effectively undone by the NICE guidelines implementing the use of the Clinical Frailty Scores (NICE issued an amendment but in some ways the damage was already done).

We can't deny treatment to people solely because they have a learning disability, whether it's CPR, or surgery, or ventilation, or medication.

DNR you are in a very bad way when you get to this point. It isn't a case of jump starting someone and back to as before.
It's brutal often leading to many lifelong and possibly life changing problems.
Usual shit reporting taking things out of context to whip up outrage and hystria

Usual shit reporting taking things out of context to whip up outrage and hystria

Not really. Regardless of the realities of resuscitation, the first set of COVID guidelines on DNR was deemed discriminatory against people with ASD and learning disabilities. if this mistake was not acknowledged and rectified it would be far more worrying.

However any attempt to try and minimise the 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.

Very you seem confused.

You’re angry at the apparent cases where people with autism and learning difficulties and no underlying health issues have died because they have been denied CPR. Yet you’re unable to provide evidence of the numbers of people who have bern affected.
You’re angry that allegedly patients and families have not been included in any conversations about DNACPR.

Yet when you are given an explanation about the process that is undertaken when consideration is made about a DNACPR, you’re angry about that as well because it’s pointless.

How many DNACPR conversations have you been involved in? And what were there outcomes? If a patient or family expresses a strong difference of opinion to the clinician, how is that resolved?

And interestingly, where has the OP of the thread disappeared to?

Yet you’re unable to provide evidence of the numbers of people who have bern affected.

There's currently a programme running called LeDeR which aims to review.the death of each person with a learning disability. It has raised that DNACPRs are being applied inappropriately in a number of cases. Out of 112 cases reviewed in one year, 19 had DNACPRs applied inappropriately. My experience and personal opinion is that it's probably higher than this.

How many DNACPR conversations have you been involved in? And what were there outcomes?

If Very has been involved in many, it would likely be as a clinician and they wouldn't be able to share details.

If a patient or family expresses a strong difference of opinion to the clinician, how is that resolved?

It's resolved on a case by case basis. Clinicians are the decision makers but if a patient or their family disagrees with the decision it can end up in court.

And if a clinician were to defend the position that "learning disability" or "autism" are sole reasons for denying potentially life saving treatment (which DNACPR is!), then I don't think the court would be sympathetic.

Lemonblast, I am not at all confused. I don't need to look at the figures regarding deaths or how many people were affected when my concern (note not anger,) is centred around the fact that the initial COVID guidance was actually rolled out before being deemed discriminatory against people with ASD and Learning Disabilities. I am concerned that you seem to want to brush over acknowledging that this discrimination actually happened.

I am fully aware there are valid reasons to having DNR put in a patient's notes. As I said, my mother died of terminal cancer I myself have received treatment for cancer. I am aware of the issues involved.

Yet, I think it is important that people with ASD and Learning Disabilities receive treatment that is just as individualised as people without these conditions. Not least because ASD and Learning Disabilities are very much spectrum conditions. This is why the events outlined in the OP made the news. This is why the mistake made needs to be fully acknowledged. So that injustices and potential injustices are not perpetuated.

Yet when you are given an explanation about the process that is undertaken when consideration is made about a DNACPR, you’re angry about that as well because it’s pointless.

Pointless conversations are a concern, yes. Because a conversation should not be pointless. If you are asking a patient to consider something and give their opinion, then that opinion should be one that actually matters and is taking into consideration when a decision is made about treatment. Even if the final decision lies with the clinician, the patient's wishes still need to be taken into account as part of the decision making process.

Your account of the process seemed to bi-pass this consideration as a matter of course. In which case the discussion then becomes a cruel, pointless box ticking exercise which is selfish and somewhat cowardly on behalf of the clinician demanding it. The fact is best practices demands it should not be like this. It demands a patient's views should be taken into account.

The conversation matters, @veryvery because it's important that people are not given CPR when they DON'T want it.

When the clinician starts the conversation, they don't know which way it will go. And their concern is more that they might give unwanted CPR. It's important that they give the patient that option to refuse it.

It's unusual for the conversion to go the other way. But obviously it can (as in my mother's case mentioned upthread.) This does leave the doctor in a difficult position, but in the end, their oath to "do no harm" is borne in mind. If by some fluke my mum's heart restarted, but they left this paralysed six stone lady with every rib broken and further brain damage, they would have done harm.

I don’t think anyone is saying there is no discrimination in healthcare access for people with learning disabilities or autism. There most certainly is.

There is work going on to address this but it’s a huge task. It’s not the highest profile work either. DNACPRs are required to be individual decisions but the inequality starts well before that.

Trusts now have statutory obligations to review all deaths of patients with learning disabilities.
All trusts have LD nurse specialists.
There is clear guidance.

There are many, many professionals whose main role is a specialist role and who see few people with learning disabilities. Their focus will be the condition they are expert at treating and their experience of LD may be very limited.

How is the fact that Autism or learning disabilities a spectrum relevant to this discussion?My child has both his need,s are complex and will never live independently however in all other aspects he's a healthy child because no underlying health issues his autism and learning and the extent of how it affects him should not bear any relevance.on any treatment .

Resusitation only has a 5% chance of succes. Succes meaning that the person is still alive after that, not necessarily that the person will have a long life. For 95% it means that besides the pain of the heart attack and gasping for air while dying they start to painfully push your heart and break all your ribs. Not everyone is unconscious by this point. It is extremely traumatic. It's not a nice idea that dying people that are in pain get tortured, but that is exactly what it is.

Also, people need to understand that there is a reason that the heart stops. That reason mostly still exists after resuscitation. So there just moght not be a good reason to try and resuscitate someone.

How is the fact that Autism or learning disabilities a spectrum relevant to this discussion?My child has both his need,s are complex and will never live independently however in all other aspects he's a healthy child because no underlying health issues his autism and learning and the extent of how it affects him should not bear any relevance.on any treatment .

Would brain damage due to lack of oxygen severely affect his quality of life?

I agree that just autism alone shouldn't be a reason. But resuscitation really isn't pretty. That goes for all of us. It should be undertaken when there is a good chance of a normal life afterwards. Otherwise it can be best to let someone go.

The conversation matters, @veryvery because it's important that people are not given CPR when they DON'T want it.

I acknowledge that but it should not be the only reason it matters. It is also important that very careful consideration is given to the people's very individual perceptions over what constitutes a good recovery and quality of life with regards to the likelihood of that happening after resuscitation.

DNACPRs are required to be individual decisions but the inequality starts well before that.

I can quite appreciate that and this point is an important one to consider too.

Their focus will be the condition they are expert at treating and their experience of LD may be very limited.

Absolutely and it is important to consider this.

How is the fact that Autism or learning disabilities a spectrum relevant to this discussion?My child has both his need,s are complex and will never live independently however in all other aspects he's a healthy child because no underlying health issues his autism and learning and the extent of how it affects him should not bear any relevance.on any treatment .

I would have thought it would be relevant because some Learning Disabilities and ASDs are closely intertwined with co morbidities and also that a person's mental state and capacity can impact recovery. But be under no illusion, I am strongly advocating people with Learning Disabilities and ASD are offered the same individualised considerations and the same choices as a person who does not have these conditions.

You could use the same argument for everyone though I expect brain damage through lack of oxygen might just have an impact on anyone's quality of life ,and I'm well s are CPR is brutal I was a nurse but learning disabilities and Autism shouldn't be relevant .