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?

"In this case, a discussion with the family would have helped them to understand the medical decision making process."

nut this did not happen. hence the whole case

According to the article the family were unavailable for discussion.

A person with Down syndrome has a life expectancy of between 50 and 60. A person without Down syndrome lives on average until late 70s.
Anyone approaching the end of their natural life, with significant complications of dementia and swallowing problems should have the issue of resuscitation addressed urgently to avoid distressing and burdensome treatment that will not succeed.
This would and should be discussed with that person if they are able to understand. the family may also be included in the discussions and it is usually best practice to do so
Resuscitation decisions do not preclude full and active treatment in every other respect. We need to have more debate about this in society at large.

Apologies - haven't read the whole thread. I am NOT defending the hospital choice re DNR as I don't know all the facts, only whats on the website. BUT a decision not to resusitate doesn't need families permission. It is based on a medical decision about whether or not resusitation is likely to have any sort of positive outcome. It is best practice to discuss with family but ultimately the decision is a medical one

Er, according to the article his family were there virtually every day, doesn't sound very unavailable to me. I guess this is part of the reason they think there is a case to answer.

I hope the legal case sheds more light on this complicated and emotive issue. If the families complaint is not upheld I hope it gives them a better insight into the medical profession and the decisions that were made, if it's found that the man's learning difficulties did influence the DNR decision and that the family were indeed 'available' then I hope some kind of disciplinary action is brought against the staff involved.

Unfortunately, doctors do not need patient or relative consent for a DNR order.

As someone who is pro life and works in a hospital I have always found this greatly upsetting.

ginmakes why was I asked to sign a DNR for my 10 year old son if it is a medical only decision

Doctors are also pro life, and make a decision as serious as this as a team and generally from Consultant level, and in all my experience with some reluctance as our primary aim is to do as much as possible for the patient. it has to be done with care and LD would not be a reason to issue one..however advanced demntia and swallowing difficulties and poor general prognosis would be likely to be.
Greater public awareness of these issues would be good, however the media does not everalways provide a good source of balanced information.

The medics should have fully explained to you why they thought resus would be futile in your sons case . The fact that they obviously didnt is probably one of the reasons why you were unhappy it about . But i presume that they were still offering active treatment ?
I think one of the main problems is that the NHS has historically treated those with LD's and DS and a whole myriad of other conditions appallingly. When i say historically , it really isnt that long ago either . So people with a relative who is even my age , may have had to fight long and hard to get appropriate treatment etc .
I still think that DNR is an appropriate treatment option in some cases , where it is clear that it would be futile . I do think though that the reasons for the decision should be fully explained to relatives and the patient . Properly explained and not in namby pamby nicey nicey language which can leave people confused as to what the Dr is actually trying to say . I have witnessed this happen a few times now and i have had to re explain to people what has been discussed .

In a nutshell, DNR is issued at a senior level when the condition causing deterioration and possible death is either untreatable [ eg end stage cancer] or already on maximal treatment with further deterioration in an irreversible condition [eg terminal lung or heart disease or advanced dementia]

CPR and ventilation only buys time for further treatment to be instigated .

in that case there would have been no mention of LD'S or DS.
the fact that there was shows that they must have been aprt of the decision

Not going to disagree with you there , it should have said end stage dementia and any other co-morbidities that were relevant . DS isnt a disease process .

I don't imagine it was a part of the decision process, more that doctors usually include all conditions in a list rather automatically ...it should not have been included imo unless qualified as the reason for the early dementia.

Am i the only person suprised that it was sent as part of the discharge paperwork?

Frumpet my son lived for another 3.5 years. I fear his CP,and cost of his TPN may have had something to do with it.
But I do agree how strange he was discharged with the DNR paperwork

2old2beamum the law is quite complicated but parents make medical decisions in the interests of their children so as a parent you have the option to sign a DNR if medically indicated.

While a competent adult can refuse medical treatment on any grounds they want, parents are supposed to make best interest decisions so don't have the same lee-way for refusal of treatment against medical advice. For example, an adult can refuse a life saving blood transfusion, but a parent cannot refuse a life saving blood transfusion on behalf of a child against medical advice. No one, either parent on behalf of child or adult has a right to demand treatment that is not medically indicated.

For incompetent adults there is no legal obligation for the doctors to consult the family. It is good practice to do so, but they are not obliged to. This results in the weird possibility of parents being able to make decisions until their child turns 18, after which decision making is taken up by doctors on behalf of the incompetent adult (unless the parents seek a court appointed order of guardianship).

It doesn't matter for this case who made or makes the decision to issue a DNT. That never precludes a responsibility to inform the NOK, especially when NOK is regularly on the ward.

It's pretty simplistic really: I absolutely hand over the making of (OK most, I'm not a passive patient, surely nobody whoever nursed is?) care decisions but I also absolutely retain the right to be informed of those decisions, and if I am not capable then this is handed to my NOK as a matter of course and indeed ethics.

And in most cases I would argue that whilst a lead Consultant might be the person to make decisions (I emphasise might, I know of some pretty shoddy decision making both in my wider family and friendship groups, one case involving a decision not to resus a newborn with heart problems whose parents then got the child moved and shared 6 years with their otherwise thriving child- it was only MRSA after a shunt that took him eventually, he was a perfect candidate for transplant)NOK or rather, people who love and care for the person being discussed, should absolutely have a right to input.

Peachy - does your NoK have a power of attorney or equivalent to act for you in the event of incapacity? Just being next of kin does not give them a right to make decisions on your behalf if you become incapable.

not sure but I would have thought if this man did not(does not) have the capacity to make decisions he will have some one who has power of attorney (have a feeling it is called something different in these cases) that would normally be a family member.

Not necessarily. It isnt automatic, someone has to apply to take on that role, and not everyone has someone who wants to to it. It is a fairly lengthy and involved process.

Doctors will make a decision based on medical issues in the best interests of the patient who lacks capacity..as said before the only influence we ALL have over our DNR and escalation status is refusing. We can have input as in "I want everything done Dr" and this will be taken on board.

Relatives have no influence.. just input as to the pts likely feelings on the matter..

Would any of you wish your relatives to decide if you are DNR or not..the law is there for a reason. Not all relatives have the best interests of the patient at heart and not all can navigate how to make that sort of choice so that is why the law is as it is.

who ever makes the decision.
it should imo never be made because of DS.

Of course not I agree

This has made me feel sick :( The thought of doctors not thinking that my dd1s life is worth living because of her LDs :(

It does sound bizarre that Down syndrome would be given as a reason here, unless it was as an attempt to explain the root cause of other problems.

It would be interesting to know what the details of this case actually are, beyond what has been reported in the press.