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?

But where does it stop. My beautiful son aged 10 had a DNR due to his complex needs (TPN, vetiricular shunt, bladder problems etc I felt cajoled into agreeing into DNR.My biggest fear was that they would carry iy out when I was not there.
Several months later he was in hospital a senior nurse asked me about the DNR and I said I was not happy I felt J would know when hjs time was up she threw the document in the bin (a rebel like me)
Three years later Stef was ill yet again, all btg wigs had left the room, to arrange a white cell transplant Stef looked at me----I knew he had had enough and I gave him permission to go he did 5 mins later We were on our own very peaceful very special, NO need for a DNR he did it his way
Bless you Stef you did it your way

2old2beamum that is so sad xx

Gosh what strength and dignity you have 2old2be, what a moving post.

My sibling has DS, seeing this as a reason for DNR feels like a knife to the heart. Its like putting down something as insignificant as 'likes pizza' or 'felt a bit tired after work the other day', downs is not in and of itself a problem. I'm all too familiar with discrimination against the learning disabled in the NHS but this just takes it to the next level (assuming the complaint is upheld).

The problem here is that the medical/nursing staff havent had a conversation with the relatives explaining thier reasons for the DNR . A DNR doesnt mean that the person will not recieve all other treatment for reversible conditions , it just means that in the event of an arrest situation the person will not be put through the trauma of resus , which in the main is futile anyway.
People very rarely spontaneously arrest in hospital , there are ususally plenty of warning signs leading up to the event , that if acted upon , can prevent the arrest , these would still be done with the patient in question, even with a DNR.
Resus is horrible,but done to try and save a life , it is not pretty and for the person undergoing it , it must be truly horrific . I wouldnt want to go through it unless there was a very good chance of total recovery .

But frumpet life is precious to some people

2old2beamum life is precious to anyone but not at all costs.

If you had ever resus'd someone who did not have a DNR (or as it used to be NFR) and therefore HAD to be CPR'd. felt every bone in their body jolt & ribs crack and then yes - yippee we got him back- only to discover he had severe brain damage and died slowly over the next months ...you too would understand why the DNR is issued.

We should not have a resus at all costs attitude.

ALL care is given to the patients, it is not withdrawn & in many cases the patient slips away rather than having an acute cardiac episode, it is not a decision taken lightly by the medical & nursing teams but I do agree consultation with the family needs to be priority spelling out the procedures and realities of the situation.

humbled by 2oldtobe

I worked on NICU for many years (midwife, paediatric nurse) and we did have some successes. If you read a previous post I did let my beautiful boy die with dignity.
However the post is about the DNR was placed on a man with Down Syndrome
without the consent of his family,
Strange it was unlawful not to let the poor man to have someone help him die
a couple of weeks ago

2old2beamum - that's very touching and :(. Sounds like you knew exactly what was best for your DS.

I think that the patient in the article has been treated very shoddily - his family should at least have been consulted, it's one thing to conclude that someone with advanced dementia and other health problems isn't mentally able to make a decision on a DNR, but it's an entirely different prospect when they exclude his family as well! That's just wrong (and it's just as wrong to issue a DNR only on the basis of his LDs and DS too).

I am all for life being precious . And i think that what happened is wrong . From personal experience i would hate to spend my last few minutes of life , having bones broken , being electrocuted, having needles pricked into me by what are essentially a bunch of strangers unless there was a very good chance that i would make a full recovery , not just keeping me alive for a few more hours or days .

All this being done without sedation i might add .

But when you do CPR you are dead

ots the grounds given Down syndrome and Learning diffcultie that I have problem with .Does that mean my son who has Ld ut otherwise healthy will not get the right treatement becuase they feel his Ld are grounds for a DNR

Not the dementia side though on Dementia that should been dicussed with the family

Frumpet
With respect that is not the point.

The choice that you would make or yourself or those you love is yours alone.

And Downs syndrome being listed as a reason why it is better to let this man die is abhorrent.

People with learning difficulties die younger than the mainstream population even after you have excluded medical aspects of their condition. Which is awful.

The choice that you would make or yourself or those you love is yours alone.

And Downs syndrome being listed as a reason why it is better to let this man die is abhorrent.

Totally agree, pag.

The decision re: resus should definitely been discussed with the NOK.

But someone who is already bed-bound and getting a PEG feed - you need to ask yourself how well they're going to do post-arrest. It's not just a matter of doing 30 chest compressions, putting the paddles on, zap and hey, they're back. Resus can go on for ages, ribs break, IV access, blood gases taken from the groin, supportive airways being used - it's aggressive and the absolute last desperate resort to keep someone's body alive. Most people don't survive an arrest, and those that do often develop complications secondary to the arrest like pneumonia. You can just about get over an arrest if you're young and fit - dementia, bed-bound and unable to swallow? I don't think CPR would be appropriate, but I agree, the decision should have been documented and communicated differently.

As someone else said, people rarely just arrest spontaneously and hospitals normally have good protocols in knowing what kind of escalation is suitable if the patient was to deteriorate i.e. is ITU appropriate, is non-invasive ventilation appropriate etc. It's not just a matter of deciding between NFR/FR.

No one has the right to make this choice except either the person or their next of kin - no one else. I have just lost a parent who was elderly and had a wonderful life but we had a DNR in place and my parent passed suddenly but peacefully after a wonderful long, very long life. I would have hated the thought of my parent being put through all of that. I also had the consent of my parent too, they did not wish to be brought back. I honoured those wishes and although I will miss my parent dreadfully but I know that they went peacefully and when I saw them a short time afterwards they were peaceful and at rest - that was the way WE wanted it and no one else. That is a very personal decision and cannot be otherwise and should not be left to anyone else!!

I think people who have posted what they would want kind of prove the point.
that is want they want, but they (I assume) to have a choice.

bossboggle have been through similar. and there is no way I would have wanted my dad to have been resuscitated. we were never asked though.

Interesting how all the people in the 'yeah but' camp seem to assume the rest of us don't understand what CPR entails. No matter how harrowing the process (or how few the chances of a decent recovery are) I assume you must still agree that the medical profession making the DNR decision without the NOK's input is at the best bad practice, at worst completely unlawful? Consent is of no less importance where the client has learning disabilities I'm sure you'll agree? In which case you're in agreement with the rest of us and there's no need for the patronising 'yeah but'.

I don't think consent is always appropriate, consent is for an intervention, not for not finding an intervention appropriate. The person and NOK should be INFORMED if a DNR is decided, but no I do not think resusitation or any other medical intervention should ever be done if the practitioners do not feel it is right.

They should never DO an intervention without consent, but this is about NOT DOING something that they deem is harm without gain

2old2beamum. Your story is sad, but also uplifting that you were able to beat the heartless treatment foisted upon you, and that your DC got to choose his time to die.

It is a decision ONLY for the Person involved, or a gaurdian of a person who is unable to make that decision.

This makes me really (swearword) angry.

makes all that crap about celebrating the NHS in the ollympic a little shallow, when bloody voldemort is putting DNR on some disabled persons files.

I just wanted to comment on some of the facts surrounding such understandably very emotional situations, but before I do so I wanted to point out that this does not mean that I do not understand, appreciate or empathise with the emotions, just that I am focusing on the facts.

In the UK there is no legal right to request treatment, neither by patients nor by families. Treatment is provided when medical professionals deem it to be appropriate. If CPR is considered by medical professionals to be futile there is no right by the patient or family to request it.

Competent adults may refuse any treatment for any reason, even if the result is severe harm/death.

One question here is whether this patient is competent. If he is competent then he should have been consulted about the DNR, although he would only have had the right to refuse resus not request it. If he is not competent his family do not have a legal right to decide on his behalf, his doctors would make a decision based on his best interests, which could include the decision that attempting to prolong his life via resus would be against his best interests (in practice many docs do discuss such decisions with families as it is good practice to have agreement on withdrawal/withholding of treatment but they are not obliged to).

However, if, in deciding what was in the patient's best interests, doctors took into account irrelevant or discriminatory factors then the decision was not justified. It all comes down to how we assess best interests. If his Down's syndrom is a legitimate medical reason that affects his quality of life then it is acceptable to take it into account. If it is not a factor affecting quality of life then they discriminated against him (I suspect the latter to be the case but it will be hard to prove in court).

the grounds give in the OP sound wrong, HOWEVER there could be a whole web of secondary medical conditions associated with his DS which could legitimately make resus add up pretty poorly in terms of how he would do post arrest

there is only one point a DNR because of Learning difficulties and downs syndrome alone is never acceptable. there is no room for discussion, it is the same as a DNR for someone who has brown hair.

everything else in this case is irrelevent.

resusitation is basically like having a life saving oporation, you should always be allowed to opt out, but not in, it should only be offered if it can do some good compaired to the harm. It is not up to the public to decide what doctors should offer for what situation, medicine isn't like a vending machine!