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

@BooksAndGin
It just wasn't life limiting disabilities.
It's autism, downs, etc. too!
With autism it doesn't make sense at all, but remember that with Down's there are often many congenital heart defects and wider health issues. I have a friend who has a daughter with Down's, she is four, has had three heart operations with ongoing issues, leukaemia and some fairly major gastrointestinal problems. Those issues are very common in those with Down's Sydrome and may lead to the DNR rather than the Down's itself. I don't think my friend would ever agree to a DNR, but the continued ongoing medical intervention does mean that one would be considered.

All depends on comorbidities, a learning disability is often combined with other conditions and come in varying severities. Dp's dd has a note on her records, she's a lovely young lady but if she was in a life support situation then extraordinary measures may not be appropriate, all depends on the situation.

trauma of the procedure is not really important because the patient is sedated

There can be physical damage as a result of resuscitation.

It is not "do not treat". A DNR is a reflection of the fact that not all medical treatment is justified by its potential outcomes.

Hippocratic oath - do no harm. It's not always fair on a patient to do everything possible to keep them alive.

In April last year, NHS England also wrote to GPs and other healthcare professionals asking them to avoid any blanket policies on clinical decisions during the pandemic, especially with regards to do-not-resuscitate forms.

april 2020 that was

The whole point of these articles is they were offered to people who did not have life limiting conditions.

@AlternativePerspective

Even so, they wouldn't have offered a DNR to teenagers who had serious underlying health conditions but didn't have learning disabilities. Which is wrong.

Meant to say that although the link op gave said offered not placed and you can't said placed then link to an article that says offered because people simply focus on that and say you're lying you're lying they offered, it turns out that a five second Google has official sources that prove blanket dnrs were placed inappropriately.

People need to stop refusing to believe that these things happen.

They do.

Refusing to believe it happens is part of why it keeps happening.

the news at the time coming from italy was to do with choosing who to save and who not to, it was unprecedented.

@Lostinafield

I remember this happening. Shocking.

Yes so do I. I am sure there will be a Panorama type program in the next few year that really looks in to darker side of the pandemic and what was really going on behind the scenes with the 'vulnerable' people we were supposed to be 'protecting'.

The accelerated dementia causing otherwise fit and healthy elderly people to be robbed of years of their life also is a travesty - 'save granny'...really?

I dont know who we were supposed to be protecting but it certainly wasnt the 'vulnerable'

In the news today:
German constitutional court requires rules on triage
In Germany, the Bundestag must "without delay" take precautions to protect people with disabilities in the event of so-called triage. The Federal Constitutional Court stated that the duty to protect life, which is the most important legal asset, imposes a duty on the legislature to act. The legislature had violated this duty by failing to take the necessary precautions.

Nine people with disabilities and pre-existing conditions have filed a constitutional complaint in Germany. They fear being abandoned by doctors if no provisions exist. Germany's highest court has now ruled in their favor. No one may be disadvantaged because of a disability in the allocation of intensive medical treatment resources that are essential for survival and not available to all, they said.

@DeepaBeesKit

trauma of the procedure is not really important because the patient is sedated

There can be physical damage as a result of resuscitation.

It is not "do not treat". A DNR is a reflection of the fact that not all medical treatment is justified by its potential outcomes.

Hippocratic oath - do no harm. It's not always fair on a patient to do everything possible to keep them alive.

Absolutely - but what is being discussed is treatment (DNR) being potentially withheld from someone because of their learning disability. In the Telegraph article a 16 year old boy with autism and LD initially agreed to not be resuscitated until it became clear he did not understand the question or concept. I know this happens (I work in the sector).

It is actually a more nuanced and complex discussion than the articles make out. We were all encouraged to think about ceilings of care for ourselves, and we must also consider that those who cannot decide for themselves must have these decisions made for them, in their best interests.

@AlternativePerspective

I refuse to open a link from the daily mail, but I think the question I would ask is whether it was really this black and white.

I.e. are we talking about a child who only had a learning disability, or are we talking about children who, as well as having severe learning disabilities, also had serious disabilities which e.g. might impact on their heart/respiration for whom resuscitation would be a deeply traumatic process resulting in further compromise to their already failing health.

If the former and it’s actually true then it is shocking. If the latter then sadly many of these children already have serious life-limiting disabilities which will at some point result in their deterioration, and where resuscitation isn’t always in their best interests.

But the attitude towards disability is societal not just within the system. People express shock when it’s an existing child, but nobody bats an eyelid if it’s a pregnancy with the potential for being terminated at 40 weeks when that baby would be viable. If it’s got a disability then it’s perfectly acceptable to terminate…

You have clearly got no personal experience of TFMR. And have no idea of the actual reality of TFMR.

You're saying "nobody bats an eyelid about it" whilst proving the opposite and vilifying mothers (parents0 couples, families) who have to make the horrendous "choice".

Please think about being kinder in your approach about TFMR parents. You cannot fathom the grief, loss, horror, heartbreak and hell that it entails.

It's the fact it was offered to people who despite their disabilities were otherwise healthy that's shocking
My child despite his severe autism and learning disabilities,is s perfectly healthy ,he should be treated the same as anybody.

@Theluggage15

The whole point of these articles is they were offered to people who did not have life limiting conditions.

The DM is not exactly known for accurate reporting, I can't read the Telegraph because it is paywalled and many of the other links seem to be thin on facts and high on emotion. This should obviously be looked into and if doctors were just blanket offering DNRs to everyone with learning disabilities then that is wrong, but we should also not hang, draw and quarter the doctors without knowing the full facts.

One of the families was asked in March this year, so some doctors are still clearly ignoring the guidelines.

agree with @MatildaIThink

a lot was wrong - the elderly being discharged at 100 miles an hour to care homes
no ppe
appalling worries in child protection, etc

Interesting but when you say "should be treated the same as everybody"

It's not impossible that is what happened, they were treated the same

When resources are stretched they will have made value choices about everyone

Those value choices are directly related to economic value

This society runs on economic value - old , chronically ill, disabled all have measurable lower economic value, so first on the DNR list

Vote to pay more for health and social
Care in taxes to reduce this happening

Absolutely horrendous

I'd like to know which Gp surgeries offered this? The one I work in certainly has never ever offered DNR to children.

@x2boys

It's the fact it was offered to people who despite their disabilities were otherwise healthy that's shocking My child despite his severe autism and learning disabilities,is s perfectly healthy ,he should be treated the same as anybody.

He should not be treated the same as everyone else, he should be treated in a way that is appropriate for him. If he is to be treated the same as everyone else he would be left to fend for himself and then largely abandoned by the state because he ended up being 30 seconds late to an appointment or because he did not submit an online form correctly.

We need to treat the majority of people equally, but some people do also need special provisions, which means society making a decision to treat them differently because that meets their needs far better than treating them equally.

At the start of the pandemic there was a lot of uncertainty regards how bad things were going to be. The public health agencies plan for the worst but hope for the best. For example there were plans drawn up for the ambulance service to stop resuscitation on all patients since this is a patient group which take up a lot of resources in hospital with only a small percentage ever recovering. There was a concern that there just wouldn't be the beds spare so instead they'd be allowed to die/remain dead at home. Thank fully it never needed to be activated as a plan.

I wouldn't be surprised if GPs were encouraged to identify patients for which outcomes following cardiac arrest would be particularly poor and discuss with them what their wishes were. Its not saying they're worthless, its saying even if they survive the cardiac arrest the recovery period going to be particularly traumatic and not everyone would like to live like that. Its reasonable to ask someone their wishes and presume they have the competence to make their decision. Its not like the movies where someone has a cardiac arrest, gets a quick shock then back to normal. It's normally weeks in bed with machines strapped to you helping you breath, constant blood tests, drugs being administered, strangers coming for your personal care, not being able to eat or drink what you want...

Absolutely don't put blanket dnacprs on people with LDs/autism. But the GP prompting/exploring wishes with a patient for whom they clinically believe could really struggle with the quality of life should they survive? Its not an easy conversation but one that should be happening more with all patients i.e. Myself I'm currently healthly in my 40s, I wouldn't want to survive an event that left me brain damaged unable to communicate with anyone, if that was a likely outcome I would prefer to be allowed to die. That's my wish and I wouldn't take offence if a GP asked me about this/documented this to be entered onto my care plan. I suspect this is a bit of a sensationalist headline and that these are conversations that are just occurring more and more as part of advance planning and the GPs are involving lots of different patient groups.

@Whitefire

A DNR is not a 'do not treat' (that is a separate issue) CPR is brutal on the body and not particularly successful. It isn't always in the best interests of the individual to attempt CPR.

In this situation the blanket policy was what was wrong, not the fact it was a DNR.

This. It's not saying people aren't going to get any treatment at all.

Yes. We don't need equal (aka the same) treatment, we need equality of outcome. People need to understand the difference.

CQC raised this issue, so there's no doubt that it was happening.

www.nursingtimes.net/news/policies-and-guidance/covid-19-care-staff-feel-silenced-over-inappropriate-dnacpr-orders-03-12-2020/