to think this is disgusting and wrong

[threeOrangesocksmorgan]

here
surely the man and his family should have had a say before this was put in place .
how can it be right?

... being bed bound and being PEG fed are equally pathetic reasons for wanting to commence a DNR form...

It's clear these HCP's didn't have his best interests at heart at all!

I think the public should have a right to comment if the practice is arbitrary. The NHS is a public service and the public have a right to hold that service to account.

I thought that society had moved on, but stories like this let us see that they havent (or at least as much as we may think)

:(

What booboostoo said.

DNR decisions are made on the basis of whether they are likely to be successful and are not about quality of life issues. The medical team are the ones who are best placed to make that judgement not the family.

Even under the best circumstances (ie young, fit, no other medical issues) CPR has a very low success rate.

Its hard to judge without knowing the patient but someone with those medical issues sounds v v unlikely to survive with or without resuscitation should they deteriorate to the stage where they arrested.

It is however good practice to discuss Resus and DNR with next of kin so the decision can be understood. It also looks like it was very badly worded with not a lot of thought.

OK i apologise if anything i have said has come across as patronising . Its just that i have been at countless resus situations where in my opinion it would of been the far better thing to let people go peacefully , the only reason they were having to go through it was they had the misfortune of going into hospital on a weekend when nobody would make a decision about the person's resus status.
However i do not believe that a persons disability , whether physical , learning or mental should be the reason for determining a resus status , it should always be about their physical health at that moment in time . I have looked after people who on being admitted to hospital were given a DNR , only for them to make a marked reovery and having it changed .
I think that the trust needs to address the issue of communication with patients and their families in the situation of a dnr being decided . I also would be asking the medics who signed the dnr to explain why the DS was relevant , if at all .

... being bed bound and being PEG fed are equally pathetic reasons for wanting to commence a DNR form...

Erm. Sound like a pretty good basis to be talking about DNAR to me. And note I say talking. Not inevitable, but as the previous poster said (much more eloquently than I could), resus is not a benign occurrence. It's hard, dirty and degrading. It doesn't usually work.

DNAR has no impact on treatment, up and till the point of respiratory or cardiac arrest. It is something that should be discussed if possible, and this is a horrible way for the family to find out about it, but please don't start on some tirade about euthanasia.

I agree with the above. While DNAR decisions should ideally be discussed with patients and family, the act of resuscitation in acute cardiac arrest is a medical treatment with a very low chance of success, even in previously healthy people.

The ill effects of attempting resuscitation are legion, encompassing huge lack of dignity as well as more obvious physical damage.

While it seems that this situation may not have been expertly handled, a knee-jerk attack without full command of the facts can never be helpful.

Reading through all the posts I realise that I am being 2 faced, My lovely Dad made me promise I would not allow resus if he had a massive stroke or had dementia. He made his own mind up thank goodness.
I have also have had 3 lovely DC's die Stef mentioned earlier, April we turned ventilater off and Jonathan died in my arms at home.
However I now realise that each person must not be treated the same and just because they have Downs or any learning difficulty should not automatically result in DNR
Sorry if this incoherent I have never put it into words before sadly I can see both sides

it is not a knee jerk reaction to recognize discrimination .
this should have been discussed with the man or/and his family.
to use his disability as a reason is wrong.
where does it end this discrimination.
we already have it pre birth, now it seems at the end of life.

Threeorange you are so right

so are you x

thanks

This is very upsetting and sadly not as rare as you might think. Mencap have written two reports about people with learning disabilities who have died due to lack of medical treatment, due to their learning disabilities.

There are procedures being put in place to try to improve the health of people with learning disabilities such as annual health checks and reasonable adjustments. I think the main problem is prejudice. There is a widespread assumption that lives of people with learning disabilities lack value. There were some awful figures released recently about disability hate crime. All part of the same problem.

DNR is a medical decision and is ideally, but not always necessarily discussed with the family. It is not the family's choice or decision to say resus should take place. If you think about it, the doctors are here to decide on the best interests of the patient, not the relatives.

If a patient dies in hospital there are many causes, some may be sudden, some may be after a deterioration over a few hours and escalation into intensive care, some may be expected.
DNRs are outdated in a way because its not just about whether someone is going to be shocked and have chest compressions...its about whether they are a patient who would be suitable for intubation and ventilation, and escalation into the ITU.Whether something is reversible or irreversible, essentially treatable. Many frail , elderly patients or those with other co morbiidities or illnesses or dementia are not suitable for this as their poor outlook from other causes impacts too much on their prognosis.
However if someone has a choking episode for example or an allergic reaction, that is life threatening, they will have all emergency treatment... but if it gets to the point of cardiac arrest/death and no DNR is in place then the decision after initial resus attempts will have to be made about the futility of continuing.
There is nothing you can do if the heart does not start beating again.
All other treatment for acute illness and emergency measures will be taken. Each case has to be decided as an individual medical judgement of the case and should really include consideration of the level of care appropriate for the patient not just about DNR.

There are some laughably thick people on this thread. WHATEVER your views on resus, whether it should be opt in or opt out, whether it's humane or cruel, whether NOK should be consulted or not surely you all agree DS should not in and of itself be cited as a reason for DNR? Or are your vociferous responses actually an expression of some underlying prejudice that you just haven't got the bollocks to be explicit about? Really, if you think learning disabled people are less worthy of life or should be exempt from the usual legislation and safeguards do just come out and say it. If you dont think they should be exempt then please just add your love and support to those of us who live and breathe it.

You can only opt yourself out.. if someone is against resuscitation for themselves they can opt out and request to be DNR, just as they can self discharge from hospital and refuse treatment. This would be discussed and all options and level of care wanted would be discussed with the patient.
Relatives cannot opt a family member out of DNR.

Juat wanted to say that there are lots of us in the NHS who wouldn't believe that having Down's syndrome was a reason not to attempt resuscitation.
I make resuscitation decisions daily, based on the physical illnesses of the patient. Severe dementia for example would be a reason to consider a DNR decision, because the effects of a prolonged period with no oxygen on an already damaged brain are so devastating. Down's isn't.
I have a duty to discuss the decision with other members of the medical and nursing team. If it is at all possible I also have a duty to discuss the decision with members of the person's family. I don't need their consent either way but a medical team who ignored the wishes of the family would need to be very sure of their opinion and in my experience this is the sort of situation that should lead to a second (and even an external) opinion being sought by the medical team.
There is also a duty to discuss the matter with the patient if possible - this quite often isn't possible in an acute medical setting as the person might not be able to understand the information and weigh it up at that time. It's more commonly discussed (IME anyway) with the person themself as a "what if?" decision while they are well. There are guidelines about advance care planning that tell us we should be having these conversations with people if, for example, we wouldn't be surprised if they were to pass away in the next year or so. So as an example, a person with advanced chronic lung disease, who'tdalready suffered several ITU admissions, might discuss with their consultant whether they would wish to go through another ITU admission if their breathing deteriorated again and this might lead on to a discussion about resuscitation.
Don't know if that is of any use to anyone.

So hang on, someone who decides for themselves that they have no quality of life and chooses that they want to end their life cannot be helped to die with dignity but the Nhs can decide that someone has no right to be resuscitated without even consulting them or their family. That's seriously fucked up and so so wrong.

pinklantern I get your post and your anger.
I don't have a child or family member with DS or LD's
but I do have a child with severe CP.
and I have come across "that" doctor.
you know the one who really thinks that disabled people have no quality of life.
I am lucky as he was an out of hours doctor who hopefully is not practicing now.
but he could not see the point of my dd going on a school trip
so I do not trust all doctors to not allow their own prejudices to take a back seat in these decisions
whether Cpr would work is beside point.
the very fact that the man had DS and LD'S was used as a reason to not resuscitate him.
that is wrong

Sarahplane there is a duty to discuss with the family if it is at all possible - that would include telephoning a next of kin who was not able to come for a face-to-face meeting, for example. There is a duty to consult with the patient if possible too (some patients might be unconscious/delerious)
I think the "being helped to die with dignity" issue is rather a separate legal matter?

If you take the emotion away from resuscitation, class it as any other treatment, and consider if we all have any right to demand anything from our medical teams?

Would you support someone demanding complicated knee surgery, that would not be effective and would likely damage the knee further rather than helping it?

While resuscitation is not considered appropriate for many patients, neither is a nose job or foot amputation. Surely the medics know the risks and benefits of offering any treatment and base their decisions on evidence. I hope so.

In this case, Down Syndrome is relevant to that person's history, but any person with advanced dementia and swallowing difficulties would be highly unlikely to survive resuscitation unscathed. Therefore resuscitation is rarely offered.

All of this should be discussed with patients, if possible, and next of kin as best practice.

I do not agree
I do not thing having DS is in anyway relevant.
no more than any other disability , autism. CP or any other.
tbh I cannot get why that is so hard to understand.
the fact that this man had DS or LD'S should not have played any part in the doctors deciding a DNR was put in place.

How horrific

Its not so much that the DS is relevant, as is the advanced dementia and being bed bound with difficulties swallowing. Presumably the swallowing is secondary to his irreversible progressive dementia which will be likely to cause his death in the near future.
Dementia is common in DS and the Dr may have included DS in the list in relation to the dementia rather than a reason not to do CPR.
In this case, a discussion with the family would have helped them to understand the medical decision making process.

Yes braverface - but according to the report, the dementia is not included as a reason for the DNR. The DS and LDs are. Which is, as people are pointing out, unacceptable.