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?

mellen no; but I would absolutely prioritise it on diagnosis of a relevant condition; as soon ds3, autistic, reaches adulthood, I will be arranging for capacity assessments.

BUT as I said; it's not about who makes it necessarily, as much as them not informing the family afterwards. There is a very significant difference there.

Just to say that I agree with Callindana's post on the first page of this thread. When my sister (who has DS) was born the first thing the doctor said to my 40 year old mum was 'Why didn't you have an amnio?"
When I was pregnant with my first I informed the midwife that I had a family history of Downs at about 16 weeks and she was clearly annoyed that I hadn't told her before. I explained that it wasn't hereditary and I would take what nature gave me, which mollified her slightly.
When I was pregnant with DD I was pressured into a series of extra scans because the left ventricle in her brain was larger than average. I lost count of the number of times I had to say "Yes, I'm commited to this pregnancy." "No, I don't want further tests." "No, I won't consider a termination for Downs Syndrome." One sonographer was visibly irritated at me for refusing an amnio, he rolled his eyes at me and huffed.
BTW, I am very glad that Mike and Vicky in The Archers have decided to continue with the pregnancy. It's a way to change attitudes for the better.
None of my post has much to do with the news item except to comment that Dsis has a high pain threshhold as part of her 'condition' that often leads to doctors not taking her seriously.
And on the homeparge this item says "Down's syndrome man" I know it's shortened because it's a headline, but he is a man with Downs , not a Down's Syndrome man.

Apalling, absolutely awful prejudice still at practice in 2012!
How can having Downs be used as a reason for DNA ?
It saddens me that some people still think downs syndrome means no quality of life

elinorbellowed how strange my DD & Downs pain threshold is high and last week walked around ok limping for 24 hrs with 3 broken bones in foot before I did anything. Also had pacemaker inerted with no sedation. These people are great.

I think DNR is used far more widely than people realise and in this case it is paticularly disgusting. As for the dementia it takes many forms and quality of life varies If this man's is able to sue with the help of his family he obviously has lucid thought.

It's time the medical proffession stopped playing god

I think that if the doctors in this case had listed the appropriate conditions as being reasons for DNR, then this case wouldn't have ever got off the ground. The fact that solicitors are prepared to take the case on means they think there are sufficient grounds for it - and the national reportage suggests that they might be right, or it wouldn't have got out.|

So whatever the absolute rights and wrongs of the case in terms of whether or not there should be a DNR in place, there appears to be a case to answer for discrimination against the patient on the grounds of his LDs and DS.

yy thumbwitch and Im surprised that so many people are missing this as the point. I fear that they are actually agreeing that his LD and DS are good enough grounds for a DNR, but just not coming out with it so bluntly.

Yy indeed . This thread is driving me batty.

It doesn't matter a shiny fuck why or when one would chose or support a DNR .

The point is that Downs Syndrome and Learning Difficulties were listed as reasons for a DNR.

Dressing it up as administrative error or diagnostic information does not cut it.

Outrageous.

Pagwatch thank you
I thought earlier that there was no point coming back to this thread as people seem more caught up with resuscitation than what the thread is about,
discrimination
devientenigma Thu 13-Sep-12 08:18:28 post really imo sums up how even in this day and age discrimination is alive and kicking in the medical world.

that is wrong.

I don't think people are missing the point. Its obvious that you don't decide to not resuscitate someone purely on the grounds that they have Down Syndrome or learning difficulties, and that communication around healthcare decisions and choices is vitally important.

However, there is a big attitudinal difference to DNR in people - some (often healthcare staff), who would have a fairly low threshold for wanting people to not resuscitate them in the event of an arrest; to a perception that DNR is the same as withdrawal of active care. And lots of points in between.

I think we agree that if events are exactly as described in the news report, something has gone wrong. It just isn't clear exactly what that was - is this a decision that was appropriately made, but documented wrongly, was it appropriately made and not communicated effectively, or was in inappropriately made?

Maybe not everyone on this thread thinks that the issues in the 2 paragraphs above are relevant, but clearly some people do.

To try to limit widening of the discussion by saying that this indicates that people are 'agreeing that his LD and DS are good enough grounds for a DNR' is offensive IMO .

Mullen can you point out where any of us conflated the issue of DNR with the withdrawal of active care? There seems to be an assumption that those of us who are outraged (or will be outraged if the complaint is upheld) don't understand. I find THAT offensive.

demented and with percutaneous endoscopic gastrostomy means that most people would agree resus is not a good idea. The Downs doesn't really add anything to that picture but was probably included for completeness. It's not an example of discrimination, it may be an example of an overworked doctor not thinking carefully enough about the sensibilities of the patient and their relatives.

It is wrong that the relatives were not informed, given the opportunity to hear why it isn't desirable and reassured that other care would still be offered. The man left hospital, he did receive appropriate care.

it is not a case of limiting the discusion. anyone can start a thread on mn, be my guest, you can the discuss to your hearts content.
but yes this thread is about a man who has ds and ld's being told they were reasons for the ndr. so obviously that is what is what is being talked about.
whether resuscitation has a good success rate is not relevant.
it is about people with people with DS being denied a choice.

have a

I'm sorry that anyone thinks my comments ignore and downgrade the inappropriateness of Down syndrome or Learning Difficulties being put as reasons for DNAR.

That is self-evidently wrong as neither are good grounds.

I am uncomfortable commenting specifically on a news story, which may have been selectively reported to gain the right amount of outrage from its readers. We just don't know the details nor the cherry picking that went on.

However, as a thread discussing the ins and outs of DNAR decisions, this is a very useful forum for exploring society's views and the medical side of things. Also useful to hear from people who actually work in hospitals and deal with these decisions and the consequences of them being made or being avoided every day.

'It is about people with DS being denied a choice' - this is patently untrue. It is about the medical likelihood of successful resuscitation in someone with significant comorbidities, who is reaching the end of his or her natural life.

but how do we know that this is one case?
how do we know that it is not more widespread?
ask any parent/carer of a person/child with a disability and they will have all met at least on doctor who does not get that disability does not equal no quality of life.

But orange , nobody gets the choice . You can choose to not be resuscitated , but thats the only choice available to us all . You may not like it , but thats the way of things at the moment .
As others have said , we do not know catergorically that this was an instance of discrimination. I hope to god that it isnt , because i thought the NHS had moved on . I know it isnt perfect and it employs humans, some of whom make still have archaic opinions of people with LD's and DS . I have worked in it for over ten years now and have yet to work with anyone who doesnt believe that all patients are entitled to the same level of respect and care and rights. Perhaps i have just been lucky .
As for insinuating that by discussing possible reasons for the DNR , that that means i see people with LD's or DS as somehow inferior, thats bloody disgusting.

Whilst pregnant with all three of my children , i chose to refuse any testing other than the routine scans . I personally would not terminate due to DS .

Threeoranges you are right many paediatricians believe our children have a poor quality of life. They don't see our children laughing as the wind and rain blow in their faces, their banana skin sense of humour.Yes life is hard for them sometimes but an abused child probably suffers far more.
Also I do believe that this case is not an isolated incident
I repeat DOWN SYNDROME is not a reason for DNR from a mum with 3 DS

oh ffs build a bridge and get over it, no one is suggesting that you are being offensive,
just that the man having DS and LD's is the point of the thread, not about choice.
but about using his disability as a reason for DNR is wrong.

2old2beamum so right, so many people see them as a burden they can't see beyond that.

Down's Syndrome is indeed not a reason for DNR, but the dementia and PEG are. But totally wrong DS was given as a reason for DNR.

This is a tough one. My own daughter was vented, as many of you know, went to oscillation and then threw a PE. She was resussed, her sats dipped into the 50s, then climbed back into the 70s, but we were told in no uncertain terms that if she threw another clot they would not attempt resuss, and why. Her xrays were grave and her bronco from when she was vented still showed two lung infections, one viral, one bacterial (the drugs managed to combat teh bacterial one but both, combined with her past history of intense chemo and lack of immune system, had caused immense lung damage).

As it was, it became apparent that the damage to her lungs was too great and her kidneys had already failed, and she still had not cleared her pneumonia when she developed a pneumothorax as by product of the ventilation and the decision was effectively made for us.

A lot of people think of resuss only in terms of arrest and defibs, and this doesn't help.

It's also about venting someone and what goes with that. Sure, some recover, but not usually when they have a damaged brain and are already experiencing problems with their other organ systems. A lot of people don't realise that vent support goes down the road of mulitple system organ failure in people who are already ill, many a time.

There was recently a case that went to the High Court (last month, IIRC) brought by the parents of an 8-year-old boy who'd been born with heart problems (HLHS, IIRC), who had done well until a recent operation and was on ECMO for 2 months. The family wanted him to remain on it, saying it was God's will, but the consultants move to take him off because there was so little chance of recovery after so long on such support. The Court ruled in the doctors' favour.

But in such cases it is a team of consultants making the decision, so the fact that this man's DS was given as a reason for DNR is worrying.

This case is outrageous and I'm so glad the family found out and are holding the doctors to account. Whatever you think of resuscitation for someone with dementia who is peg-fed, the doctors had no right to make this decision without consulting the patient and his family. The guidelines are VERY clear. The family was available, they were in the hospital every sodding day. It's sheer arrogance and discrimination on the part of the doctors. Thank heavens someone is pointing out to them that is wrong.

The trust spokesperson can bleat all they like about 'we have really good policies on treating patients with LDs', it clearly is not true or not applied in practice. And maybe this case being in the headlines will make other doctors realise they cannot just make assumptions about the quality of life of a person with LDs.

My sister's an LD nurse and has countless stories about the prejudices other health professionals display against her patients. Some fuckers in A&E refused to treat one of her patients - sent the poor guy back without bothering. Because he had lDs and they didn't want his sort cluttering up their precious emergency department. Never mind that they are supposed to call their own LD nurse down to assist in communicating with the patient. Bastards. (She couldn't go in the ambulance with her patient as she was the only qualified nurse on duty in her unit - which is a whole other story).

Resuss is a very harsh process, I agree, and most people will eventually make the kinder decision to let a person go than to put them through the ordeal of being resuscitated when recovery isn't possible.

That's not under debate.

It appears to me that Down syndrome may have been put on the DNR order as an excuse for the fact that the doctors didn't bother discussing the order with the family. As in, the man has DS therefore he is not competent to give consent.

The issue is not with the DNR itself, a DNR in the right circumstances is the best course of action. The issue is that his family, the people looking out for him, didn't know about the order until he went home and it was discovered in his bag. What a horrible thing for his carers and family to discover. Horrible.

The General Medical Council guidance says:

"You must work on the presumption that every adult patient has the
capacity to make decisions about their care and treatment. You must not
assume that a patient lacks capacity to make a decision solely because of
their age, disability, appearance, behaviour, medical condition (including
mental illness), beliefs, apparent inability to communicate or because they
make a decision that others disagree with or consider unwise

"When you are responsible for making the decision about overall benefit [of treatment], you must
consult with those close to the patient who lacks capacity, to help you
reach a view."

The BBC quotes from the DNR order: "Down's syndrome, unable to swallow (Peg [percutaneous endoscopic gastrostomy] fed), bed bound, learning difficulties".

So anyone with learning difficulties who has a peg should be left to die, according to these doctors.

'Whatever you think of resuscitation for someone with dementia who is peg-fed, the doctors had no right to make this decision without consulting the patient and his family.'

That is really the crux of the matter, edam, and that DS was given as a reason for DNR. In this case, consulting the patient wouldn't really be feasible because of his dementia.

Medically, the DNR was likely warranted, because of his dementia, and again, venting someone IS a resuss measure.

A friend whose husband died of cancer put it better, DNR is the difference between death and the possibility of a death which may be painful and traumatic to the patient, it is for those who will die, however, no matter what.

People who need to be put on a vent and who are already as ill as this man, well, there's a not insignificant chance they will not survive the procedure. We were made clear of this as well, when she went on the vent, as she was obviously not well when it became required.

In Scotland, at least, the team is allowed to make that decision on medical grounds and override the family, as far as I know, but they should and do, and did in our case, explain why if she threw another clot ressussing her was not an option.

When she did develop the pneumothorax, we were taken aside by the lead cons in ICU and our own cons, and made clear that the only way to control it was to turn down the vent and what it would be like if the pressure in the vent were maintained. The outcome was going to be the same, she was going to die, but death from the pneumothorax was going to be painful and traumatic for her, versus turning it off and letting her slip away.

Where the error is is in not consulting the family and giving DS as a reason not to resuss.