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? Do not resuscitate for people with LDs w CV19 in UK ?


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Maybe @Laura Corin or someone else in/from the UK could put this in some context? I'm googling, and it looks like the US is very different from the UK on DNR orders. In the US *you* decide this because you sign and have witnessed a living will that contains your directs on DNR. It's looking like in the UK the DOCTOR decides. For instance I found this article on DNR in Alzheimers https://www.alzheimers.org.uk/get-support/publications-and-factsheets/dementia-together-magazine/what-do-if-you-disagree-doctors-decision-do-not-resuscitate  

So I really don't know but it seems like there's probably a larger context of how their medical system does things. 

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On 2/19/2021 at 1:23 PM, PeterPan said:

Maybe @Laura Corin or someone else in/from the UK could put this in some context? I'm googling, and it looks like the US is very different from the UK on DNR orders. In the US *you* decide this because you sign and have witnessed a living will that contains your directs on DNR. It's looking like in the UK the DOCTOR decides. For instance I found this article on DNR in Alzheimers https://www.alzheimers.org.uk/get-support/publications-and-factsheets/dementia-together-magazine/what-do-if-you-disagree-doctors-decision-do-not-resuscitate  

So I really don't know but it seems like there's probably a larger context of how their medical system does things. 


Some context:


It may help if I explain that in the UK, at times of overstress on the NHS, one of the triaging tools is a "fragility index" being used to triage patients with COVID-19 due to hospitals being overwhelmed, and not having enough equipment for every patient who needed care. People unable to meet certain indicators assumed to be associated with ability to recover were given supportive care (code for "helped to die peacefully") rather than treated for their illness (and by "treated", the threshold was typically either "gateway to get a ventilator" or "gateway to get any oxygen whatsoever" - these being the primary medical equipment shortages in the NHS at that point). It was a factor in many people not going to hospital when they needed it (even if the reason they needed the hospital wasn't COVID-related and even if they would have passed the "fragility index"). Well, a number of people with autism and intellectual disabilities (we'll probably never know how many) were failing the tests due to long-standing communication problems or presenting differently to how "someone expected to recover" was assumed to look. The result was that they died even though they could have recovered with relatively little intervention.

The original incident of this happened last April (first wave of the pandemic). So picture a situation where there's a pandemic and overwhelmed NHS, visitors are banned from hospital and outside care assistants/advocates heavily limited and a tool that is likely to bar someone with an intellectual disability or autism from getting treatment. At that point, an honest conversation about perhaps letting them die in a familiar place, surrounded by staff who already know them, might have been regarded as ethical. In the UK, one element of getting that is a "Do Not Attempt CPR" order. (The other part is an Advance Care Directive, which details preferences for how care should happen if capacity to make medical decisions is lost, but the DNACPR has some legal force in medical settings). The Guardian article also mentions them being made for people too frail for CPR; since people with disabilities can also grow old and frail, that is a factor for some people.

Anyone who has one of those, properly agreed by everyone involved, can die where they are without anyone questioning why an ambulance was not summoned (provided, of course, that resusitation is expected to be necessary to continue living and certain end-of-life protocols are obeyed).  If they go to hospital, and then their heart stops, doctors can't try to restart it. (They are, however, still required to provide all other healthcare that they would give to someone in the same situation who hadn't signed such paperwork). In a situation of discussion, consent and trust, DNACPRs and Advance Decision (Living Will) can be very useful for protecting people's quality of life.

Like in the USA, most UK DNACPRs have to be discussed and agreed with the patient directly. (The article @PeterPan linked is because some doctors have a very strange definition of "discussed" and "agreed", and it rarely gets challenged in court - I certainly don't know of any such case being upheld). However, people who don't have the power to make their own healthcare decisions (for any reason) don't have to be included in discussions about such documents. Instead, it is their next of kin (and, if being made in advance, perhaps other loved ones) who are supposed to be involved in that discussion and agreement. Those in care homes delegate day-to-day decisions to the staff of those care homes, and that's where the potential for abuse occurred. Even though serious medical decisions like this can't be delegated to care homes unless there's literally no other option (i.e. someone with no family or friends whatsoever), it's easy for doctors who are already skating the definition of "discussed" and "agreed" to talk to care home staff, agree a DNACPR and quietly file the document without so much as informing the resident or their family what happened. (As you can probably imagine, it's hard to fight a document you don't know exists).

Unfortunately, last April, 12 UK GP practices sending letters to care homes for people with autism and intellectual disabilities* to put blanket "Do Not Attempt CPR" orders on every resident's record. One of them was a practice in a neighbouring district to me. Some of them had the order placed without the residents or their relatives/next of kin being informed, let alone discussing and later consenting to it as British law requires, and in a few cases, were told it had happened by the subsequent inquiry's investigators (rather than anyone involved in their loved one's care). For those who then went to hospital, it was worse; DNACPRs were sometimes used as a proxy for the "fragility index", even for people who would have passed the test. That would in turn have made it impossible to use the legally-protected right to change one's mind about whether to go through with the DNACPR (especially given the restrictions on visitors, families and carers entering hospital to find out about what was going on). As you can probably imagine, the British disability community was furious.

It isn't that the "Do Not Attempt CPR" orders were made that is the problem. It's the way they were forced on people without their knowledge, consent or input.

In mid-May, after strenuous campaigning, the "fragility index" had instructions added that barred its use on anyone with known autism or intellectual disabilities (and a number of other categories of people who were believed to be at risk of the same problem). The UK government (who, by the way, is ultimately in charge of nearly everyone qualified to issue DNACPRs, including the practice near me that I know issued them wrongly) reiterated that DNACPRs issued without discussion and consent were illegal, always had been and (for the foreseeable future) always would be. We all thought people would learn their lesson and make decisions of this nature collaboratively, as they are supposed to be made.

We were wrong.

In September, the NHS became overwhelmed again, and Mencap's statement indicates that people are still having DNACPRs applied to them without their permission or discussion. (Remember from last time, that we almost certainly don't know the full extent of the problem, as it is likely some people haven't been told yet). This means that preventable deaths probably occurred again, all because legal safeguards were ignored.

The fact that people with intellectual disabilities who are eligible for vaccines are having problems getting it because an artificial amount of "badgering" is required is... ...not helping the general feeling of distrust towards certain health authorities.

* - The UK does not consider autism a subset of intellectual disabilities, though someone can qualify for both diagnoses.

 

On 2/19/2021 at 10:02 PM, Pen said:

Would it apply to a child with dyslexia? Who gets the severe child version? 

It only applied to people in residential care for their disabilities. So unless someone had such severe dyslexia that they had to go into residential care (which I'm not even sure is possible), dyslexia wouldn't make one eligible. I have some autistic friends who lived in an area where this was happening (different practice, thankfully). Even if they had been at the same practice, they wouldn't have been given one of these DNACPRs because they live with relatives rather than in a care home. The sleight of hand that enabled these particular DNACPRs to be issued would be impossible for anyone living away from a care home.

I'd also add that under-16s were never legally eligible for the "fragility index" - it was only for adults, and primarily aimed at elderly people.

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