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?

'They're not the drastic life-saving measure some people consider them to be.'

No one is saying they are. The main issue is and should always be that this individual is in an advanced-state of dementia. This person's brain is already very damaged, it will not improve with time, only worsen, and depending on how far advanced it is and the speed with which is it progressing it can indicative of the need for DNR but again, the issue is that this was not discussed with the family.

Again, DNR is and should be about quality of death, which is a part of life, IMO, for individuals for whom death is an event which is a certainty in the near future and who may have other significant health issues relating to their condition and it should, as edam suggests, be a legal requirement for doctors to discuss this with the patient and their family or make suitable attempts to do so and record them.

When you get to the stage of DNR it involves the patient's quality of life as pertains to how they will meet death because such patients are so ill the only way they will go is down, not stable, not even, but near enough to death for this to be a relevant and important discussion.

That's why many families sign such orders on behalf of relatives who are no longer able to do so or children with terminal illnesses whose health has been so severely weakened by their condition and its treatment that the only question about the quality of their lives is do they die on a vent in a PICU, or die crashing during the vent process, or throw a clot or other complication from mechanical intervention that is traumatic and awful, or do you make provision for them to die peacefully surrounded by those they love and who cared for them.

But it's something that should be discussed with family and the patient, if possible, and their doctors.

"Going back to your previous comment (not your view) someone with a PEG and LD is not worth a life. "

Did anyone say that?

"For a person who's been feeding fine all their life it getting a PEG does signal a huge change in their ability to care for themselves and often in their quality of life, but that alone isn't a reason to assume that their life isn't worth living."

But in someone who has one secondary to dementia ( if that is why it was done) it goes some way to indicating the severity of the dementia, which I think is why people have mentioned it, not to say that a PEG means that life isnt worth living.

'Going back to your previous comment (not your view) someone with a PEG and LD is not worth a life. Well let us say goodbye to my lovely 2 DC's'

But is that actually the case here? Was the PEG inserted because this person's dementia and its resulting brain damage required the procedure due to declining swallowing function/risk of aspiration pneumonia?

In what context was his DS given as a cause for DNR?

And again, I'm not condoning writing DNRs in peoples' files without their knowledge or their families' knowledge, or suggesting that there is no prejudice or assumptions made about people with LDs and their care and treatment. Like edam, I believe it should be a legal requirement for physicians to discuss DNR with the patient and family where appropriate and explain why, document this and/or what attempts have been made to do so.

But there's a much wider issue here, a very grey one, when it comes to end of life care, particularly in a society with greater and greater numbes of dementia-sufferers.

Not read the whole thread, apologies, but could not not comment.

Any DNR decision should of cause be discussed with the person and their family in all but the most exceptional circumstances by which I mean it is impossible to discuss or the patient refuses to discuss it.

However, doctors do not have to offer any treatment or intervention
(including resuscitation) which is considered futile. So although anybody (who has capacity) can refuse resuscitation no one can insist on it. And in theory it could be appropriate to fill out a DNR in direct opposition with the patient or families wishes.

HOWEVER in reality if a patient feels very strongly that they want to be resuscitated I think most Drs would probably go ahead knowing that it was what the patient wanted. I have certainly done this.

DNR does not mean Do Not Treat. Nor does it necessarily mean not for ITU, very aggressive treatment etc I think the whole process behind DNR decisions needs to be more transparent, more uniform across the NHS & better explained to patients & families.

I know my Mum would want DNR if it ever came to it. Having watched her Grandmother die, slowly and painfully, of dementia, and seen her own Mother have a breakdown as a result of caring for her Grandmother, she has always been VERY clear in her views about her own end-of-life care, even when she was in her 40s (and I was a teenager). But that is her choice (and she is free to change her mind if she ever is in a situation where she is severely ill). It is not a decision that doctors should foist on anyone without their knowledge, let alone their consent.

One thing I think is worrying is that the BMA is opposed to assisted suicide. Yet doctors are making DNR orders without even telling patients and families, let alone consulting them. The doctor as 'all-powerful figure who must not be challenged' construct was supposed to be done away with decades ago. Seems to be still the case when it comes to dying.

CailinDana I so agree. I know so many young people with feeding, they also have a very good quality of life.
I do stil think that neither the disability of the PEG should have been used as a reason

edam very good point

God this is shocking. Is it legal?

Apparently it is noddy.

However, it's totally unethical.

DNR is an intervention, there is no right to demand medical interventions in the face of contrary medical advice...and for good reason, otherwise everyone would just demand whatever they felt like. Doctors don't make the decision to not resus lightly, whatever the rights and wrongs of this specific case, doctors do NOT go into medicine so they can watch people die while they sit on their hands.

DNR and in general the withdrawal/withholding of treatment are completely different conceptually from assisted suicide and active euthanasia as the former involves an omission which may result in death while the later involces an action that will result in death. The BMA supports both the right of competent adults to refuse life saving treatment and the right of incompetent patients to have this decision made for them by their medical team or legal guardian. This is entirely consistent with not supporting assisted suicide and active euthanasia based on the distinction above.

The English Courts cannot find the doctors guilty of not consulting the family in this case as there is no legal requirement to do so. The Courts can't invent such a requirement, only Parliament can change the law (again for really good reasons).

I agree that doctors don't want patients to die unnecessarily Booboo. However, there is definitely a problem with some doctors not actually seeing a person with LD as a genuine "patient" - more as a thing to be pitied. It's an attitude problem rather than a problem with the concept of DNR. My friend told me stories that absolutely made me sick, including one guy with severe LDs who developed cancer and was told by doctors that they "wasting their time" treating him. When they were questioned on what they meant it transpired that his cancer was treatable but in their opinion - NOT in the opinion of the people who actually knew and loved him - there was no point in preserving his life and it was "kinder" to let him die. From a treatable illness. His poor family had to fight for every single paracetamol he was given. It was sickening.

That sounds awful - what were the outcomes of the complaints?

But that's not the case here, Cailin, and yet it's a very important issue as more and more people develop dementia and require treatment and indeed, more people with DS who survive into their 50s and 60s and develop dementia, which tends to be even more aggressive than those who do not have this LD.

They didn't complain in the end mellen, they were broken by the experience, completely broken. He did die in the end, from other complications, and once he was gone they just faded too (quite an elderly couple, only child) and were both dead within a year.

'I do stil think that neither the disability of the PEG should have been used as a reason '

What if the PEG had to be inserted due to declining function associated with the more rapid form of dementia that is known to afflict some with Down Syndrome? If this is indeed the case, then how it is any different from any other previous condition cited as a reason for DNR? There are many of these.

Hope I'm making myself clear here.

To me, the issue is surrounding the secrecy with which the DNR was inserted into his notes and the lack of consultation or recorded attempt at it, all of which is not legally required.

Learning disability should never ever be given as a reason for a DNR. Having a learning disability is not an illness, it is part of the person's make up and is not a valid reason to withhold resuscitation. I can't see how it ever would be a valid reason. PEG feeding might well be a factor, given that it can indicate a loss of function and poor nutrition.

Something similar happened with my mum. She was diagnosed with terminal cancer and they thought she would die within weeks (she wasn't aware how soon they had called it). She took a turn and was taken into hospital. We left thinking everything was under control and we would pop along in the morning. A junior doctor then told her, her condition was quite serious and she might choke to death through the night and if she went down they had decided she would not be resuscitated. She sat up in bed all night terrified and we walked in next day with no idea of what was going on or of course we would have stayed with her. We were furious someone could just nonchalantly talk like this to a patient.

Seems this kind of thing happens quite often. Something similar happened with an uncle as well.

God how horrible for your mum Begonia, that's really awful. Did you put in a complaint about it?

'Learning disability should never ever be given as a reason for a DNR. Having a learning disability is not an illness, it is part of the person's make up and is not a valid reason to withhold resuscitation. I can't see how it ever would be a valid reason. '

I agree, except if it's associated with a condition such as the rapid form of dementia associated with those who have Down's Syndrome, because it's a previous condition, and believe it or not, there are many of these which are also not illnesses, but other genetic conditions associated with particularly poor prognoses (the boy with HLHS springs to mind). These are given as contraindictions to resuss and I'm wondering if this was the case here, similarly if the PEG were inserted because swallowing function was from deterioration caused by the brain damaged by dementia.

Again, I don't know if this is the case.

It must always be considered, too, the effect of resuss on the patient in view of their prognosis.

I'm just trying to see this from the position we found ourselves in, tbh, in which DNR was probably in her notes, but because we were consulted about why she wasn't a candidate for ECMO and why her vent needed to be a) inserted b) oscilated c) turned off.

Her prior condition was indeed a factor, and is so for others we knew whose children ultimately died.

Some genetic conditions, LDs and otherwise, are a factor because they are associated with prognoses that differ from an otherwise healthy person facing the same thing.

And this is not to say there is not prejudice and assumptions, but we don't know if this was the case here.

But we don't know the patient's full history. Did he have past CT scans which showed the dementia was progressing more rapidly than in a NT person? Was the PEG inserted because the patient lost swallowing function due to the dementia? What was the condition of the patient's heart.

ALL of these factors can be associated with the need for DNR in NT people as well, and those with other genetic conditions such as cystic fibrosis in soe cases, HLHS or other heart conditions or acquired conditions such as cancer or past cancer treatment (I know several for whom ventilated breathing will ultimately result in death due to organ weakness or transplanted organs or organ removal comprising organ-system function) and they would likely be cited on a list of reasons for DNR, not because doctors are necessarily seeking to deny treatment, but because the treatment will result in death and sometimes, a far poorer quality of death (I don't know many who'd chose for themselves or their loved ones to die in ICU hooked up to machines v in a more peaceful palliative setting, but I accept this may be the case for some).

But they should be fully discussed with the patient, if possible, and family.

Thing is though expat, this man clearly wasn't on death's door as he went home eventually to be cared for in his usual home. That would imply that whatever condition sent him into hospital in the first place was curable.

I can understand doctors taking the very difficult decision to issue a DNR, if, as you say, death is inevitable and the quality of the death is the issue. But this clearly wasn't the case for this man.

In fact I've just looked at the article and his family state that since his discharge he's been fine, still on a PEG obviously, but with a good quality of life.

By the way I for one really appreciate you talking about Aillidh's treatment. I know it must be hard to think about that time but it's really helpful to hear the point of view of someone who's been in that terrible situation.