Autism, C19 and Do Not Resuscitate

AmityAmity Administrator, Citizen
edited January 2022 in Advocacy

At the beginning of the Pandemic in the UK, a few news stories emerged about DNR files being issued to residents of care homes, en masse, without their participation in the process and without their knowledge or consent.


At the time discussions around doctors having to prioritise who to put on a ventilator were a new normal as countries responded to the horrors of the early days of the pandemic.

These DNR letters were sent to the elderly, patients with incurable/untreatable terminal illnesses and those with neurological conditions including ASD/autism and cerebral palsy.

https://www.bihr.org.uk/blog/the-fight-against-covid-19-whose-life-counts


I found this revolting, utterly hideous, in the cold light of day, when all the rhetoric and politicking is removed, there is a tier which is truly reserved for the young, the non-disabled and the healthy. 

We all know this, but the bias had never been so blatantly obvious, and I never previously understood just how deeply the fissure ran. Not only was this categorisation seemingly normal within the medical sector, the concept of human rights or regard for the UN Convention on the Rights of Persons with Disabilities literally disappeared at the first relatively justifiable opportunity.


Laura McConnell, an Edinburgh teacher who has autism, ADHD and hearing difficulties went public with her concerns about a DNR being placed on her file without her consent after it emerged in June 21 that a deaf man living in Edinburgh had a DNR placed on his file without his consent, the reason given for making the decision without him was  'communication difficulties'.

https//www.edinburghlive.co.uk/news/edinburgh-news/edinburgh-mum-fears-do-not-22690551

 

The deaf community are trailblazers historically when it comes to disability rights, I'm watching this one with great interest.


https://www.deafaction.org/news/deaf-man-given-dnr-order-without-his-consent/






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Comments

  • Statest16Statest16 Citizen, Mentor
    So your saying people are being put on as we say in the US "comfort care" without written consent?
  • AmityAmity Administrator, Citizen
    As far as I understand comfort care is for people with a 6 months to live prognosis?

    In 2020 Do Not Attempt Cardiopulmonary Resuscitation orders otherwise known as DNR were issued to people with learning disabilities and autism, along with other groups deemed as frail.


    This practice was supposed to have been addressed after a Care Quality Commission report detailed their findings in early 2021

    ...in our review of people’s care records we found that 51% (85 out of 166) of DNACPR decisions had been made as a standalone decision – that is, not part of a conversation about advance care planning.

    Providers and health and care professionals need to ensure that conversations around DNACPR decisions are held as part of a wider conversation about advance care planning. They also need to make sure that DNACPR decisions are not being used in a potentially discriminatory way for people, such as people with a learning disability, who are not near the end of their lives.

    Furthermore, we heard that some people had been discharged from hospital with a DNACPR decision that they or their families were not aware of, or that families had been pressured into agreeing to these decisions.


    “I only found out about the [DNACPR] when they were discharged from hospital; no-one had mentioned it to me before nor to the person concerned. It was a tremendous shock.”
    Respondent to our public survey

    “The first we knew about it was a letter from the hospital after my father had been discharged. No conversation was had with us or my father.”
    Respondent to our public survey

    “I felt pressured to accept the decision of the doctors as they illustrated a terrible picture (i.e. immense suffering of the person) if I did not.”
    Respondent to our public survey

    This is supported by the results from our public survey which found that 30% (21 out of 69) of individuals with a DNACPR in place and 28% (150 out of 544) of relatives or carers said they were not aware that the DNACPR had been applied.


    https://www.cqc.org.uk/publications/themed-work/dnacpr-people-at-the-centre
  • verityverity Administrator, Citizen
    Statest16 said:
    So your saying people are being put on as we say in the US "comfort care" without written consent?
    Basically if your heart stops, with DNR they don't have to attempt to save you. Normally this can only be done with consent.

    At the hight of the pandemic some GP practices were pressuring some people with disabilities an health problems to fill out these forms, seem council where trying to implement this across supported living and care homes.

  • verity said:
    Statest16 said:
    So your saying people are being put on as we say in the US "comfort care" without written consent?
    Basically if your heart stops, with DNR they don't have to attempt to save you. Normally this can only be done with consent.

    At the hight of the pandemic some GP practices were pressuring some people with disabilities an health problems to fill out these forms, seem council where trying to implement this across supported living and care homes.

    So, if consent has not been given, how could they actually issue them? Wouldn't that be fraud on top of everything else?


  • AmityAmity Administrator, Citizen
    ^^
    This is an example of a completed one, again without the patients awareness and without a discussion with her family.
    They seem to be able to issue these without the patients or guardians knowledge... They shouldn't be able to, but this is a completed form on a patients file.
  • verityverity Administrator, Citizen
    There is two components:The reason why they are not giving CPR and the awareness of the patient of this.

    In the case where the patent is not asked for consent, reason for this is given.

    This is the system across the UK currently, though it seem it is the vulnerable that are being targeted.
  • verityverity Administrator, Citizen
    There are medical reason not to do CPR, it is the fact they are not involving the patient, and they are seemly targeting healthy individual or individual three is no reason why CPR would not work.
  • Statest16Statest16 Citizen, Mentor
    So they can do a DNR order without patients consent,specifically what countries do these?
  • AmityAmity Administrator, Citizen
    Statest16 said:
    So they can do a DNR order without patients consent,specifically what countries do these?

    They aren't allowed to make the decision unless the patient is essentially so frail that that the invasive resuscitation process would have a high likelihood of failing.

    As we know Autism is not in this category of frailty, nor learning disabilities or being deaf for example, yet as time passes it seems clearer that as a category of people, the disabled community has been disproportionately selected for DNR orders by hospital doctors and community GPs, with and without their patients consent.

    This has happened in the UK, to the elderly, the ill and the disabled.
  • AmityAmity Administrator, Citizen

    Do Not Attempt Resuscitation orders (DNARs, sometimes called DNRs)

    These are orders made by the treating medial team in cases in which Cardio-Pulmonary Resuscitation (CPR) is not to be attempted. These can be made because CPR is not likely to be effective or where CPR is felt not to be in the patient’s best interests.

    CPR has been described as ‘the opposite of a peaceful death’, involving as it does intense medical and physical intervention. DNARs are therefore particularly useful in cases in which the person is likely to die from a cardiac or respiratory arrest, but wishes to be allowed to die peacefully at home, in hospice or in hospital.

    DNAR orders are approved and signed by the consultant in charge of the patient’s care. They are not legally binding and there is no single agreed format, although hospitals may design and use their own forms so as to ensure consistency and easy access to the forms by treating teams.

    The recent case of Winterspear v City Hospital Sunderland NHSFT (2015) EWHC 3250 (QB), (2015) MHLO 104 clarified the legal position as regards consultation with the family.

    This was a case in which a man with a learning disability and pneumonia was admitted to hospital. The treating physicians placed a DNAR order on him early in the morning without consulting his mother.

    When his mother discovered this the next morning, she objected strongly and the DNACPR order was removed. The hospital argued that it had not been practicable and appropriate to contact the mother in the early hours of the morning.

    The judge (Blake J) ruled that:

    ‘The core principle of prior consultation before a DNACPR decision is put into place on the case file applies in cases both of capacity and absence of capacity.

    If it is both practicable and appropriate to consult before doing so then, in the absence of some other compelling reason against consultation, it would be procedurally flawed to proceed without consultation.

    It would not meet the requirements of MCA 2005 s4(7); it would accordingly not be in accordance with the law. It would be an interference with Article 8(1) that is not justified under Article 8(2). (2)

     The claimant (patient's mother) sought damages both personally and as personal representative. The judge was not persuaded that she has any personal claim for damages, and decided that a declaration reflecting the procedural breach of Article 8 was sufficient.’

    This is an important ruling for doctors to note as it places a legal obligation on the doctors to consult with the family of the patient wherever possible whether or not the patient has capacity. It is worth noting that this would have to be ‘a compelling reason’.

    Specific issues related to people with an intellectual disability and DNAR orders:

    People with intellectual disabilities often have complex medical needs, some of which might make resuscitation more difficult or less likely to be successful. A careful balance needs to be struck between taking into account people’s complex health needs and ensuring that decisions not to resuscitate are not based purely on someone’s diagnosis.

    Although knowledge of intellectual disability and awareness of the value of the lives of people with an intellectual disability has improved substantially over the past twenty years, some medical teams may still be inclined to place lower values on the lives of people with intellectual disabilities or be more pessimistic about the health outcomes of those with intellectual disabilities.

    It is, therefore, important that treating teams communicate clearly within the team and with all those concerned in the patient’s care (including the patient wherever possible) so that the decision can be a joint one and so that everyone is aware of the rationale behind the decision.

    Wherever possible, these meetings should be documented in the patient’s notes so at to provide evidence of consultation and the rationale behind the decision. 

    As recently as 2012, the family of a man with Down’s syndrome was unaware that the treating team had made a DNAR until the man returned home and they found the document in his belongings.  They have since taken the case to court claiming discrimination on the basis of his intellectual disability


    Source http://www.intellectualdisability.info/changing-values/articles/do-not-attempt-resuscitation,-end-of-life-decision-making-and-associated-directives,-and-their-implications-for-people-with-intellectual-disabilities




  • verityverity Administrator, Citizen
    edited January 2022
    I don't think this is a decision that should be made by a doctor alone.

    if there is a medical reason why a person cannot be resuscitated, this first need this discussed with the individual and every effort need to be made to made that possible. If that is not possible this need to be for legal guardians.
  • verity said:
    I don't think this is a decision that should be made by a doctor alone.

    I think it should be illegal for the doctor to make the decision alone. 

    I can't wrap my head around the whole thing despite your best efforts to explain. The UK seems to have some of the strongest stances against euthanasia/assisted death, so how can they support something that's much worse?

    Sorry, I don't mean to be aggressive towards you or anyone in this thread, my brain must be a bit off today because I still can't understand how this can be done without forging a signature since the judge clearly ruled that: "The core principle of prior consultation before a DNACPR decision is put into place on the case file applies in cases both of capacity and absence of capacity" - is this a guideline or a legal obligation?


  • Statest16Statest16 Citizen, Mentor
    edited January 2022
    Amity said:
    Statest16 said:
    So they can do a DNR order without patients consent,specifically what countries do these?

    They aren't allowed to make the decision unless the patient is essentially so frail that that the invasive resuscitation process would have a high likelihood of failing.


    Ok understood.
    The way the US handles it is this; A patient before becoming ill must by paperwork to there doctor specifically appoint a person to make vital decisions.This is almost always a husband or wife or in case of minor child a parent most often.If a parent is old and widowed it may be an adult child.

    Only with the permission of the legally appointed person can life support to terminated.So a person in some circumstances may be on life support in a vegetable state for years or decades.Some people are alone and have no person to speak for them if they are unable to make there own decisions ,others have a appointed person who is religious and won't ever terminate life support.

    A friend of mines sister was made brain dead in a car accident 35 years ago,but the mother was a Bostonian devout Irish Catholic and would not terminate life support.Then 15 years later the mother died and my friend ended his sister life support.

    I myself have no medical emergency contact or decision maker right now being divorced since 2017 and both parents are gone.However I'm in a new relationship now and if were still together next october when I have my next physical I will appoint her in paperwork.

    But here it is not uncommon for a 18 year old to get into a motorcycle accident and have a brain injury and live as a vegetable in a nursing home for 30 years.

    EDIT:BTW the legal term for someone who makes a medical decision for a mentally incapacitated person is "next of kin" informal as it sounds
  • BenderBender Citizen
    edited January 2022
    Statest16 said:
    The way the US handles it is this; A patient before becoming ill must by paperwork to there doctor specifically appoint a person to make vital decisions.This is almost always a husband or wife or in case of minor child a parent most often.If a parent is old and widowed it may be an adult child.

    Only with the permission of the legally appointed person can life support to terminated.So a person in some circumstances may be on life support in a vegetable state for years or decades.Some people are alone and have no person to speak for them if they are unable to make there own decisions ,others have a appointed person who is religious and won't ever terminate life support.

    A friend of mines sister was made brain dead in a car accident 35 years ago,but the mother was a Bostonian devout Irish Catholic and would not terminate life support.Then 15 years later the mother died and my friend ended his sister life support.

    I myself have no medical emergency contact or decision maker right now being divorced since 2017 and both parents are gone.However I'm in a new relationship now and if were still together next october when I have my next physical I will appoint her in paperwork.

    But here it is not uncommon for a 18 year old to get into a motorcycle accident and have a brain injury and live as a vegetable in a nursing home for 30 years.

    EDIT:BTW the legal term for someone who makes a medical decision for a mentally incapacitated person is "next of kin" informal as it sounds

     It's roughly the same here: doctors have a legal obligation to consult with the patient or the next of kin before making any kind of medical decision, including giving you medication. You cannot get any kind of intervention, even relatively non-invasive surgery (laparoscopy etc) without a signature. You have to READ and sign cca 187 forms to consent OR refuse any kind of medical procedure they recommend.

  • Statest16Statest16 Citizen, Mentor
    ^^^^
    Makes sense,from what I have read the UK's unique in terminating support without consent
  • Statest16 said:
    ^^^^
    Makes sense,from what I have read the UK's unique in terminating support without consent
    Maybe that's why they're so much against assisted suicide and think that can happen without the patient's consent. Which is a frightening thought.
  • verityverity Administrator, Citizen
    Bender said:

    I can't wrap my head around the whole thing despite your best efforts to explain. The UK seems to have some of the strongest stances against euthanasia/assisted death, so how can they support something that's much worse?
    It is common for countries that don't allow euthanasia to have protocols around when a persona has deemed to have died or be brain dead, and indeed these is where the rules can be bend.

    Someone might be refuse or be refused food. Even though a doctor cannot kill someone under certain circumstances food can be withdraw.


  • verityverity Administrator, Citizen
    Statest16 said:
    ^^^^
    Makes sense,from what I have read the UK's unique in terminating support without consent
    Sadly I doubt it is unique. I suspect this is more common than you think since this come under different protocol and concept in different jurisdictions, or it can happen under the radar.

  • verity said:
    Bender said:

    I can't wrap my head around the whole thing despite your best efforts to explain. The UK seems to have some of the strongest stances against euthanasia/assisted death, so how can they support something that's much worse?
    It is common for countries that don't allow euthanasia to have protocols around when a persona has deemed to have died or be brain dead, and indeed these is where the rules can be bend.

    Someone might be refuse or be refused food. Even though a doctor cannot kill someone under certain circumstances food can be withdraw.


    Wait a second: are you telling me a hospital is legally allowed to refuse to feed a terminal patient? Or that some people break the law by doing this? I remember a scandal a few years ago, but I thought it wasn't legal.

    Euthanasia isn't legal here either and something like this would be a criminal offense both for the institution and the individual.
  • verity said:
    Statest16 said:
    ^^^^
    Makes sense,from what I have read the UK's unique in terminating support without consent
    Sadly I doubt it is unique. I suspect this is more common than you think since this come under different protocol and concept in different jurisdictions, or it can happen under the radar.

    People break the law all the time. They should be investigated and prosecuted. At least the ridiculous amount of paperwork here leaves a trail as wide as the Autobahn.

  • verityverity Administrator, Citizen
    edited January 2022
    It is a complicate issue I don't wish for it to be over simplified, however we also have to consider how event like the pandemic in line with protocols like this have led to a lord of the flies scenario in the minds of some professionals. Which put disabled people in danger of being "disposed" of.
  • BenderBender Citizen
    edited January 2022
    Thank you, I'll read through momentarily.

    Again, apologies if I came across as aggressive - I'm just really shocked.

    I'll add this much: "withdrawing hydration" leads to an excruciatingly painful death 😟
  • verityverity Administrator, Citizen
    edited January 2022
    Bender said:
    Thank you, I'll read through momentarly.

    Again, apologies if I came across as aggressive - I'm just really shocked.

    No need to apologise. I think it is shocking.

    I think there are issues round what death is in the medical community. Stopping the heart is done for some surgery. If you can control the body temperature you can prevent cell death. This was discovered by accident, in an avalanche patient.

    Death is not a trivial thing to determine. I person can be brain dead and be artificial alive, but there body doesn't support life, and often thsi is not recoverable.

    The converse to these shocking revelations is where family refuse to withdraw life support for months after death even though only blood is being pushed around, and there is no signs of life (eventually they will decompose). In that case the courts have intervened becuase the science doesn't support the idea that they are living.

    However I think everybody should be offered the opportunity to have their life saved. What that entail does require medical judgement. However I don't think CPR should be refused becuase their longer term prognosis is less good, becuase CPR is about immediate life only. I think it is unethical to make a judgement on survivability after CPR not based on the immediate impact of doing the CPR. If it clear they would not survive CPR, and this would make things worse then obviously that a judgement they will make.

    Obviously there are judgement calls, it is difficult, but ordinary folk are right to be concerned and should question they above.
  • verityverity Administrator, Citizen
    edited January 2022
    A case in Ireland that led to a change in the law is where an expectant mother died becuase the hospital could not terminate the pregnancy legally, she bled to death. It was fairly clear the baby was dead or dying and in any case they couldn't save both.

    The mother wasn't even Christian she was original from India.

    So it is important this is not viewed through a reductionist lenses, however. the issue of consent and awareness is an important one.
  • verity said:

    The converse to these shocking revelations is where family refuse to withdraw life support for months after death even though only blood is being pushed around, and there is no signs of life (eventually they will decompose). In that case the courts have intervened becuase the science doesn't support the idea that they are living.


    I think cases in which all neurological activity ceased should be in a category of their own.

    The links you posted turned me from a supporter of euthanasia laws into a fervent supporter of euthanasia laws. Especially since it's been discussed here in recent years with the intent of making it legal.

    I believe such things should be very strictly regulated and done in the most painless and humane way possible, with respect for one's dignity. "Withdrawing hydration" might appease some people's conscience, but it goes against all of the above.

  • Statest16Statest16 Citizen, Mentor
    This was in today's news from the US state of Vermont

    Former majority leader of Vermont house of representatives Willem Jewett 58,who was diagnosed with mucosal melanoma a year ago.Died by medical suicide from a law he himself helped sponsor and pass through the Vermont state legislator.

    I read it this morning in necn.com but if you google it its in several news sites.
  • There is a difference between a DNR (do not resuscitate) order and terminating life support. Entirely two different things.

     A DNR means if the heart stops, CPR is not done. In my state, this order requires a signature of the patient or legal representative and the physician. It is a yellow form that must be posted in a conspicuous place.

    Few people are aware of the extremely low rate of success of CPR. Fewer than 10% of patients getting CPR are revived, but most die later.

    3% of people getting CPR survive more than a few weeks after receiving CPR. Most of those are young and otherwise healthy.

    CPR is a violent procedure. Unless there is a DNR in place, legally CPR must be done.

    Life support is when the physical body is supported by machines; usually a ventilator, but could also be tube feedings, etc.

    In my state, in order to terminate life support, there must be a living will, or even better, a health care surrogate. In my state, a guardian cannot terminate life support. You have to have a health care surrogate; a person who you have named (in advance) in legal documents.

    It is my opinion, that CPR in most cases is a violent procedure that is useless in most situations.

    The value of life support is trickier to assess. 

    The covid pandemic brought to the fore the rationing of care, such as ventilators. I don’t remember right now the success rate of ventilator treatment in managing covid, but it is pretty low.  In general, if a patient goes on a ventilator, the patient is likely to die. Like I said, it isn’t hopeless, but it is low.

    Rationing of care was discussed at hospitals and among doctors. 

    What would you do if you were in charge of allocating 10 ventilators and there were 26 patients requiring it to survive?


  • verityverity Administrator, Citizen
    edited January 2022
    > It is my opinion, that CPR in most cases is a violent procedure that is useless in most situations.

    Hmm I think if the heart stop in a hospital setting, it is not useless. The low rate of success is down to arrests happing before the person is noticed often not with medical assistance.

    If an ambulance is called CPR would have to be started by a member of the public not the first responder. They aren't goign to be checking the paperwork or the identity of the patient over the phone. 

    Generally speaking compression only CPR is recommend though not in drowning cases.

    In a hospital setting CPR is just one component. In rural areas public Defibrillators are increasingly seen. There can be issues with vandalism and theft though in tight communities they are invaluable. There is one in a fishing village not far from me. Still CPR still need to be started.

    If the heart has actually stopped breaking  some ribs is the least of the problems.
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