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

@Staryflight445

Even if it’s deemed as cruel to put them through it?

@Mickarooni

I’m quite saddens people would think doctors do this willy nilly.
It would 100% be in their best interests.

leder.nhs.uk/images/annual_reports/LeDeR-bristol-annual-report-2020.pdf

Evidence disagrees with you.

@Mickarooni I’m on page 6 and seeing people dying from things like pneumonia, cancer, pulmonary thromboembolus.

Page 8 says: Almost half (46%) of adults had 7 to 10 long- term health conditions when they died.

I’m not reading through 156 pages. What am I missing?
It’s not uncommon for doctors to recommend a DNR in those scenarios.

[quote Staryflight445]@Mickarooni I’m on page 6 and seeing people dying from things like pneumonia, cancer, pulmonary thromboembolus.

Page 8 says: Almost half (46%) of adults had 7 to 10 long- term health conditions when they died.

I’m not reading through 156 pages. What am I missing?
It’s not uncommon for doctors to recommend a DNR in those scenarios.[/quote]
Those with experience in the field of people with LD know there are health inequalities and we know the medical profession (as a whole) contributes to this.

Ooops ignore the meme I accidentally uploaded! This clearly isn’t a joking matter. There are many reasons why people with LD die considerably younger and it isn’t all just their health.

That is the case for all of these scenarios though, not just disabled people.

@DeepaBeesKit

Isn't the whole point that resuscitation is an incredibly invasive and aggressive procedure and that there are people with disabilities/health conditions for whom it's not necessarily something they might want?

My daughter had to be ventilated as a baby and it was horrible. Her whole body had to be put into essentially muscle paralysis to be able to do it, and the cocktail of sedatives and other drugs she was on was horrific, weaning her off the opiates in particular was awful.

There's a reason it's a last resort and not taken lightly.

This is my understanding. I recently undertook training regarding DNR/DNACPR. Basically Very few people who undergo resuscitation will make a full recovery, and most who survive will be left with numerous ongoing health issues.

For someone without the ability to understand what is being done to them or why, the ongoing treatment could be tantamount to torture.

It's not something that doctors offer because they can't be bothered or because they place less value on the lives of people with disabilities.

It's that if the situation is ever so bad that this person's heart stops, on the balance of probability, the doctor can't guarantee them any quality of life. It's sad, but not uncommon.

@Crazykatie

I don’t believe this happened, a teenager with severe learning difficulties would not have the capacity to make that decision. A parent or guardian might give consent, trauma of the procedure is not really important because the patient is sedated

No one consents to a DNR in this country. It's entirely a medical decision made by medical professionals. They will usually take a patient's wishes into account, but you cannot demand any particular treatment.

That is my understanding too.
There’s always discrepancies where DNRs are concerned too. Hospitals sadly make mistakes in all areas, I’m not sure why this particular issue is being jumped on though.

Some of the examples in the link posted above are examples of where a DNR would be appropriate for anyone, seriously unwell people.
Anyone needing resuscitation is seriously unwell.

It even says on one of the bottom pages they haven’t got a full report/information.

It’s incredibly sad people jump on stuff like this. It’s not exactly easy to request a DNR or set one in stone.

@Staryflight445

That is the case for all of these scenarios though, not just disabled people.

This is a thread about people with learning disabilities. They have disproportionately poorer health outcomes. There is evidence for this, hence the LeDeR prog. It is a matter of fact, not a matter of debate. People with LD do not receive timely and appropriate care hence why there are specialist LD health nurses, annual LD health reviews and LD health passports etc.

@Staryflight445

That is my understanding too. There’s always discrepancies where DNRs are concerned too. Hospitals sadly make mistakes in all areas, I’m not sure why this particular issue is being jumped on though.

Some of the examples in the link posted above are examples of where a DNR would be appropriate for anyone, seriously unwell people.
Anyone needing resuscitation is seriously unwell.

It even says on one of the bottom pages they haven’t got a full report/information.

It’s incredibly sad people jump on stuff like this. It’s not exactly easy to request a DNR or set one in stone.

This isn’t a mistake. This was an active decision made. You don’t accidentally contemplate DNACPRs on otherwise healthy young people.

You call it “jumping on”, I call it advocating for people who may not have a loud voice but deserve to be heard.

‘ This is a thread about people with learning disabilities. They have disproportionately poorer health outcomes. ’

Why is their care entirely to blame here? It’s kinda stating the obvious really?

I haven’t read the thread but yes I was aware of this. Like the rest of the world March 2020 was a scary time, but for me much of it was spent desperately isolated because if MY son got ill it was clear there would be no help. I feel changed by it. My home is no longer really a home, because I know when things get hard we will be the first to be thrown to one side. But where could we go where my son would be treated equally? There is nowhere. When people say that everyone is ruder and more selfish coming out of lockdown, for me they would be right. I’ve seen how things are now.

Your report even shows you why that is.

@Staryflight445

‘ This is a thread about people with learning disabilities. They have disproportionately poorer health outcomes. ’

Why is their care entirely to blame here? It’s kinda stating the obvious really?

No, it isn’t obvious. It’s interesting that you’re arguing with facts. The key word is disproportionately- dying of preventable reasons e.g. chest infections and constipation.

If you think it’s all overstated, do let the CQC know; www.cqc.org.uk/publications/themed-work/protect-respect-connect-decisions-about-living-dying-well-during-covid-19

“From the beginning of the COVID-19 pandemic, there were concerns that ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) decisions were being made without involving people, or their families and/or carers if so wished, and were being applied to groups of people, rather than taking into account each person’s individual circumstances.“

Learning from Lives and Deaths
leder.nhs.uk/

”Research has shown that on average, people with a learning disability die earlier than the general public, and do not receive the same quality of care as people without a learning disability.”

^^ this is fact.

DNRs are a medical decision, normally made with family consultation. If you are ill enough to need cpr you can often be looking at months recovery, ventilated, then with a tracheostomy, and a lot if rehab..you need to be able to engage with the physios, not pull your tracheostomy out etc. This is extremely hard for anyone but for those with LD's it's sometimes near impossible. If you can't engage with rehab, you'll die anyway just after months of what probably feels like torture. A DNR doesn't mean no treatment, you can have full treatment. I've never see a DNR made on somebody with a LD who didn't have multiple co morbidities.

I think it’s always been the case. Dds notes used to have IS FOR RESUSCITATION written across the top in large letters. I think if her consultant felt that was necessary to protect her if admitted then it’s probably an issue.

‘ Mickarooni

Learning from Lives and Deaths
leder.nhs.uk/

”Research has shown that on average, people with a learning disability die earlier than the general public, and do not receive the same quality of care as people without a learning disability.”

^^ this is fact’

Of course it is. It’s complicated for many reasons as your report states. Mental capacity being one of them.
It also shows how many other health issues are commonly alongside learning disabilities.
Of course their care will not be the same, that’s impossible particularly if their learning disability is severe.

The quality of their care should be the same even if the nature of the care cant be.

@BusBusBus

The quality of their care should be the same even if the nature of the care cant be.

Of course. People need to stop making excuses. It’s clear why and how people with LD (and other disabilities) receive poorer quality care when people pretend the discrepancies don’t exist.

Lack of mental capacity…capacity for what? It’s time and decision specific. If you think the person
lacks capacity to consent to a blood test, then you assess capacity and make a best interests decision. Excuses aren’t acceptable.

Adding that a Fraility Scale, used ordinarily in geriatrics, was appropriated and used to score disabled people, particularly those with learning disabilities during the pandemic.
FT article here
www.google.com/amp/s/amp.ft.com/content/b2f5c9cb-dbaa-46bc-8bb3-7b53fb1fdbc6

You can’t force people to have treatment @Mickarooni

I remember this back in April/May 2020. It's good that the Daily Mail are trying to bring it back to public attention again, but can't believe 40% of people voted YABU. Maybe they work for the NHS and are trying to cover their backs?

My sister works in A&E and at the very start of the pandemic, she rang me crying because she’d been in a meeting where it was discussed to put DNR orders on anyone over 60 and she was scared stuff of our parents catching it.

This sort of stuff scares me, we are sometimes just a step away from becoming the sort of society/country that terrifies us.

@Staryflight445 You can’t force people to have treatment what ARE you talking about? either you have capacity to consent to a particular treatment in a particular time and situation or you don’t. IF you don’t someone else makes those choices for you. Just as they do when you are an infant or unconscious. That’s NOT forcing treatment that’s appropriate care.
Do you have any experience of people who lack capacity? Do you honestly think that they get fair and equal access to health care, or indeed education or anything else?