DNR order on kids with disabilities

[2021s]

Sorry about the daily mail link but this is too shocking not to share. DNR orders placed on teenagers with learning disabilities during pandemic in England.

www.dailymail.co.uk/news/article-10346479/GPs-offered-teenage-patients-learning-disabilities-not-resuscitate-orders.html?fbclid=IwAR2Moljqum74qgnOkCbldVPCng0tUA9IWfUs6loTQQXdZBX_x9wGNk844jo

This is terrifying that it would ever be considered.

www.dailymail.co.uk/news/article-10346479/GPs-offered-teenage-patients-learning-disabilities-not-resuscitate-orders.html?fbclid=IwAR2Moljqum74qgnOkCbldVPCng0tUA9IWfUs6loTQQXdZBX_x9wGNk844jo

I haven’t made any assumptions at all @ineedsun

@Staryflight445

No I’m not saying that at all *@ineedsun*

It would be harder for your LD/ASD child to recover from being resuscitated though, and the more severe the LD the harder that will be. In many cases it wouldn’t be in their best interests.

DNRs get put on NT people all the time, young and old.
The whole situation is awful.

DNRs don’t usually get put on groups of people in a blanket way, purely because of a diagnosis.

That is what was proposed here (and some people took that forward) whether people want to believe it or not - it happened. Charities campaigned against it and individual staff and care homes refused to set it up.

For those who have the luxury of being able to deny it, I’d like to say I’m happy for you but I’m not. I’m angry with you for refusing to see the facts.

@Staryflight445

I haven’t made any assumptions at all *@ineedsun*

On what knowledge do you base this then?

It would be harder for your LD/ASD child to recover from being resuscitated though,

Also, he isn’t my LD / ASD child, he has those things but he isn’t those things.

@stingofthebutterfly

I don't find this shocking, tbh. As other have said, autism and Downs syndrome are not life limiting. Anyone who is at the point of needing resuscitation has some major health issue. The DNR orders were offered, not forced. I'm fairly sure my autistic daughter would jump at the chance to not be resuscitated, should something happen to her.

Incorrect, Downs Syndrome more often than not also affects other things such as the heart.

@Hercisback

Resuscitation is brutal and has such poor outcomes. Whilst a blanket policy is clearly wrong, having a discussion about a DNR should happen in every family.

Before I get jumped on I've seen both a 'successful' resuscitation and the medical issues that arose. These included brain damage, broken ribs and loss of eye sight. I've also seen elderly relatives beg to have a DNR because they wanted to go when their time was up.

Since this is the case , why do we do DNRs at all?. Why not a blanket ban in them ?

My physically strong as an ox , 17 year old with a diagnosis of ASD is as entitled to have all measures to save his life as anyone else thank you .

Learning disabilities bare NOT a good reason to apply a blanket ban on extreme life saving measures..

I know this is not the same argument but I personally don't think the same blanket bans on those aged over 60 is ok either !!!

I agree with you that a blanket policy isn't acceptable, especially for only people with learning disabilities.

A blanket ban by age would be similarly unacceptable.

However DNR conversations should happen in families so that, if required, you can relay the person's opinion to the medial professionals.

@Hercisback

I agree with you that a blanket policy isn't acceptable, especially for only people with learning disabilities.

A blanket ban by age would be similarly unacceptable.

However DNR conversations should happen in families so that, if required, you can relay the person's opinion to the medial professionals.

Yes, but that isn’t what was happening. Certain groups of people (the ones who typically go under the radar and have no voice) were targeted on a blanket level. Either ask everyone the same question or only ask those who at an individual level have been clinically assessed as needing to be asked.

This is exactly why I've been strict on hygiene during this pandemic!
My sons 17 and totally depends on me and his dad .If he had to go into hospital I know his needs wouldn't be fully met if we couldn't be with him and would he get the best treatments 🤔 NO he wouldn't sadly.
I would totally refuse to leave my son in the hands of the NHS

@Staryflight445

It would be harder for your LD/ASD child to recover from being resuscitated though,

@ineedsun

I would also like to know on what evidence you base this??

”It would be harder for your LD/ASD child to recover from being resuscitated though, and the more severe the LD the harder that will be. In many cases it wouldn’t be in their best interests.”

Genuinely, I don’t understand this. I’m prepared to accept I may be wrong but is there a medical reason why an otherwise physically health teenager with an LD or ASD would find it harder to recover from resuscitation?

LD and ASD come in a great range of severities. They can hinder recovery from resuscitation and severe disease including COVID if the patient cannot/will not cooperate with the treatment (refusal to wear and oxygen mask for instance). But that only applies to a percentage of people with these disabilities- plus a whole host of other people. After all the same can be said of small children and I dont see anyone suggesting routinely putting DNR orders on them.

After all the same can be said of small children and I dont see anyone suggesting routinely putting DNR orders on them. exactly! Are all the people who can’t wear a face mask going to have DNRs? What about those with MH issues, or those who don’t have GCSEs?

@HeyBlaby Incorrect, Downs Syndrome more often than not also affects other things such as the heart. I think it’s about half of people with Down’s syndrome who have heart defects, so you’re writing off quite a lot of people who don’t.

[quote 5zeds]**@HeyBlaby* Incorrect, Downs Syndrome more often than not also affects other things such as the heart.* I think it’s about half of people with Down’s syndrome who have heart defects, so you’re writing off quite a lot of people who don’t.[/quote]
And even if they do, many will have had surgery to rectify it as a baby (like my adult DC) and are now perfectly well.

The only person I know who died of Covid was a man with a learning disability, who was sent home from hospital. We all wonder if he would have been treated differently without his disability.

Blanket DNRs on any grounds are despicable.

I have a son with LD who has a IQ of 140. He is expected to sit gcses and go to uni. But he is in a SEN school. It's a blanket policy under which my three very healthy kids, two expected to live perfectly normal lives would die. Its evil.

My son with severe LD is a fit and healthy as could be. Just because he cant live a normal life should he be allowed to die?

God forbid but we are all one ar accident or stroke away from being a burden.

My LA would be rubbing their hands at the savings if 50% of the SEN kids died in county. In fact if they could facilitate a mass cull they would

@IncessantNameChanger

I have a son with LD who has a IQ of 140. He is expected to sit gcses and go to uni. But he is in a SEN school. It's a blanket policy under which my three very healthy kids, two expected to live perfectly normal lives would die. Its evil.

My son with severe LD is a fit and healthy as could be. Just because he cant live a normal life should he be allowed to die?

God forbid but we are all one ar accident or stroke away from being a burden.

My LA would be rubbing their hands at the savings if 50% of the SEN kids died in county. In fact if they could facilitate a mass cull they would

To have a diagnosis of learning disability in the UK you have to have an IQ of less that 70. Did you mean learning difficulty? This issue refers to people with a diagnosed learning disability.

@IncessantNameChanger

I have a son with LD who has a IQ of 140. He is expected to sit gcses and go to uni. But he is in a SEN school. It's a blanket policy under which my three very healthy kids, two expected to live perfectly normal lives would die. Its evil.

My son with severe LD is a fit and healthy as could be. Just because he cant live a normal life should he be allowed to die?

God forbid but we are all one ar accident or stroke away from being a burden.

My LA would be rubbing their hands at the savings if 50% of the SEN kids died in county. In fact if they could facilitate a mass cull they would

jamanetwork.com/journals/jamainternalmedicine/fullarticle/2771090

If the cardiac arrest was due to covid resuscitation is futile and we rarely perform it on anyone anymore. It's futile unfortunately. I only say this as a few people make it sound like a choice between life and death, it's not, everyone dies.

Yes they were offered DNRs instead of life support machines as were many children with Cancer and other infections too. Remember the process of intubutation is traumatic - it can cause real damage to a person and so once a child needs a Life support machine they will only have a 30-50% chance of a full recovery and that often hinges on the things they need to do after they stop needing the machine to breathe. A lot of children with special needs would find the intubation / recovery process too traumatic and would then be lumbered with even worse disabilities. For example my beautiful DN (20) who has DS had a stroke 3 weeks after she left from intensive care and is now bedbound and can’t communicate other than to cry in terror. It probably would have been kinder to her had they not used life support.

The ITU that I work in usually has 15 beds. During the first and second wave of covid this went up to 35 using other areas in the hospital. Most days there were at least 50 people requiring an ITU bed. The majority of people didn't get one because we were usually full.

There was a strict criteria for admission, which I have never seen in over 20 years in the NHS.

We did however admit a few patients who had DS and other LD.
The awake patients with limited understanding were exceptionally distressing to care for under these conditions. I felt like I was torturing during their final days and I remember them all being absolutely terrified - usually our patients are nursed one to one so can spend lots of time reassuring but during this time I would have had at least 2, probably 3 or 4 other critically ill patients to care for during a shift.

DNAR is not the same as withholding treatment. It means if a patient's heart stops we will do not carry out CPR.
The whole situation is brutal and I know a few of the consultants who have PTSD from having to make those horrendous decisions.

What would your criteria be to decide who gets the beds?

@Annna41

Isn’t is extremely common for ITU patients to be severely distressed and be hallucinating and experiencing cognitive and mental health distress? I’m genuinely asking because my personal and professional experience is that people in ITU rarely are compliant and quiet.

@Annna41 - my criteria would be that the individual is assessed not a whole category of people assessed as a lump without reference to the individual as there was pressure to do.

@Annna41

The ITU that I work in usually has 15 beds. During the first and second wave of covid this went up to 35 using other areas in the hospital. Most days there were at least 50 people requiring an ITU bed. The majority of people didn't get one because we were usually full.

There was a strict criteria for admission, which I have never seen in over 20 years in the NHS.

We did however admit a few patients who had DS and other LD.
The awake patients with limited understanding were exceptionally distressing to care for under these conditions. I felt like I was torturing during their final days and I remember them all being absolutely terrified - usually our patients are nursed one to one so can spend lots of time reassuring but during this time I would have had at least 2, probably 3 or 4 other critically ill patients to care for during a shift.

DNAR is not the same as withholding treatment. It means if a patient's heart stops we will do not carry out CPR.
The whole situation is brutal and I know a few of the consultants who have PTSD from having to make those horrendous decisions.

What would your criteria be to decide who gets the beds?

My daughter could have written your post word for word. She’s still traumatised and going into another round potentially I have so much admiration and gratitude for the work you’ve all been doing.

In answer to your question, my criteria would be based on clinical assessment rather than sweeping assumptions about some of the most vulnerable, voiceless people in society. As someone else up thread said, everything you describe potentially goes for children too, should they all be given DNRs?

Just a reminder of the original point of the thread, this is about a policy decision being made that all people with LD should be asked to sign DNRs by virtue of having LD, regardless of whether they actually have any underlying health issues which make them clinically vulnerable. The same happened with people in care homes. How anyone can try and justify that is mind blowing.

@Annna41

The ITU that I work in usually has 15 beds. During the first and second wave of covid this went up to 35 using other areas in the hospital. Most days there were at least 50 people requiring an ITU bed. The majority of people didn't get one because we were usually full.

There was a strict criteria for admission, which I have never seen in over 20 years in the NHS.

We did however admit a few patients who had DS and other LD.
The awake patients with limited understanding were exceptionally distressing to care for under these conditions. I felt like I was torturing during their final days and I remember them all being absolutely terrified - usually our patients are nursed one to one so can spend lots of time reassuring but during this time I would have had at least 2, probably 3 or 4 other critically ill patients to care for during a shift.

DNAR is not the same as withholding treatment. It means if a patient's heart stops we will do not carry out CPR.
The whole situation is brutal and I know a few of the consultants who have PTSD from having to make those horrendous decisions.

What would your criteria be to decide who gets the beds?

@Annna41 what you write is extremely disturbing. You suggesy that your hospital's criteria effectively precluded people with LDs/disabilities from ITU and they only got in by exception. Was that the case? Are you aware that such a policy would be illegal?

Why should disabled people be less entitled to a bed than non-disabled people?

Why is the effect on a consultant more important to you than the loss of life?