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?

I agree, Cailin.

Quite, expat, it's the refusal to communicate with the family and insisting on DNR purely on the grounds of learning disability that makes this unlawful. Many health professionals seem to be entirely ignorant of the fact that the Human Rights Act means they have to treat people with LDs as people, not lesser beings.

I dont think anyone has said that they think that wording is OK, just that it may have been mis-reported, or error. I find the whole thing odd - its strange that they mentioned the Down syndrome, strange to use the term learning difficulties and strange to not mention the dementia.

However, saying that putting specific diagnoses on a form means that that team thinks that anyone with those conditions should 'be left to die' is not reasonable IMO.

It's possible the doctors who treated him didn't realise he had dementia mellen. They may have assumed his behaviour was entirely due to his learning disability.

I agree that whilst the DNAR decision may have been entirely correct, using DS as a rationale for the decision is shocking. As CailinDana pointed out on page 1, whilst DS is seen as a valid reason to terminate, people with DS will be seen as having less value in society.

I would expect that they would have known, because the impression that I get from the BBC website is that some of the intervention was resulting from the loss of function caused by the dementia, but I don't think it is possible to be 100% sure of that on the basis of what has been reported.

I wouldn't be surprised if they didn't know. They seemed to have little interest in him, given that they said his family "wasn't available" even though they were there practically every day. I've known of people with LDs being left totally untreated, medical staff claiming they didn't know what was wrong, charts left blank etc.

A friend of mine worked as a care worker for years and has now gone back to train as a doctor. It was a dream of hers at school, but what spurred her on was seeing how badly her clients were treated in hospitals. She hopes to specialise in treating people with learning disabilities.

It's hard to know, mellen. If he had a PEG in place it's likely he was already experiencing decreased swallowing function as a result of the damage to his brain caused by the dementia and at risk of aspiration pneumonia.

But again, the real issue is that no one sat with the family and had a talk about his prognosis and why DNR might be warranted and that DS was used as a reason for DNR rather than his dementia and whatever decreased organ function he was already experiencing.

Yes, I agree. Though if the notes say that the family were unavailable that doesn't seem to tally with a family visiting daily. Hopefully this does get to a point where it is identified exactly what happened.

edam for the sake of factual clarity (and that alone) part of what you are saying with respect to the law is not correct. In England the families of incompetent adults have no legal right to be consulted about their medical care (unless they have gone to court to obtain guardianship). The family in question cannot sue for not having been given the choice to either try or withhold resus. It is best practice to consult families and letting the family find out about a DNR through coincidence is clearly callous and unkind - just not illegal.

Incidentally mentally competent adults have also been very surprised to find DNR orders in their notes, there was a public discussion of this issue with respect to elderly, but competent, patients relatively recently.

As for the appropriateness of citing the patient's DS there is no way one can know whether this was legal or not in advance of knowing the details of the case. Once again the news reporting of a really sensitive issue focuses on the sensationalist, inciting elements, rather than taking an informed, in-depth approach that might help readers make up their own minds. So for example, if the doctors cited DS in the mistaken belief that all DS people are of lesser moral value, or in the blanket belief that all DS people have very low quality of life, this would indeed be discriminatory. However, (again for example, I am making this up for the sake of the argument, I don't know anything about this case) if they cited DS to account for the fact that the patient had severly reduced mental status, was becoming distressed and confused by further treatment and overall his disabilities severely affected his quality of life, then the DS is an acceptable factor.

A mere description of a person cannot, purely by itself, prove discrimination. For example:

1. "X has DS" - is purely descriptive
2. "X has DS and therefore should have one-to-one educational support" - is evaluative, only makes sense because of the disability, but is non-discriminatory, as the DS accounts for the needs for extra educational support. There is a conceptual link between the DS and the support.
3. "X has DS and therefore does not have equal moral value to other human beings" - is evaluative and discriminatory because the feature cited (DS) is irrelevant to the argument.

Fair enough, BooBoo, but attempts to speak to the family should have been made and recorded in the patient's notes.

I suspect the medical team was unwise to put Down's syndrome on the DNR choice.

However.... anyone, without a background learning disability, who has dementia, probably other health problems, is bed bound and can't eat should at least lead to a discussion of the kindness of intensive intervention should something happen.

My dad is 88. He has vascular dementia. He is still living at home, but it is a really day to day challenge for my mum. He falls - a lot. As of yet he hasn't hurt himself but he will one day and he is on wafarin. I would hope strongly that, at the point he gets a bleed into his brain as a result of a fall someone would grasp the nettle and think if surgery is appropriate- because I don't think it would be..... sad to type but true. He doesn't have much physical reserve to pull through and to wake up severely disabled in a care home would be the end for him.

However if you asked him now, you'd have the same sort of circular argument that he had last time I accompanied him to the GP about his diabetes "that he isn't ready to go and wants to fight it" he got quite aggressive and the GP was actually saying that, whilst things weren't perfect they were good enough (and let's face it he eats all the wrong stuff and is actually losing weight and "fading").

Booboos, I agree there is some debate about this, but the Human Rights Act is clear about the right to life. And the GMC guidance on end of life is quite clear also. Doctors in the UK just haven't caught up. You can't just slap a DNR order on someone who is competent without their consent, or someone who is not competent without a discussion with their advocates, whether that is family or not.

There needs to be a legal case such as this one to get a ruling. That will, hopefully, tell doctors once and for all that they cannot discriminate against patients with LDs.

Sometimes resuscitation is the wrong option. But that decision must not be based on prejudice and assumptions about the worthlessness of someone with LDs.

And the BBC story is very far from sensationalist - have you actually read it?

Journalists perform a valuable public service in bringing issues of medical ethics to public attention. Journalists do lots of other things as well that are far less noble - but reporting on these kind of issues is important. It was journalists who brought the beatings of people with LDs in care homes to attention, not healthcare workers nor social care workers nor the regulators - who actually refused point blank to investigate.

No doubt there are plenty of people in authority who would rather the public didn't know what they are up to. Tough.

edam: there have been challenges in the European Court of Human Right by patients who wanted to use the right to life to ensure they received treatment that was not medically indicated, but to my knowledge they have all failed. There was a high profile one a few years ago specifically to ensure CPR in case of arrest, but it also failed.

The GMC guidance is not law it is guidance.

In cases of competent patients the guidance recommends consultation, which is quite different from the legal requirement from consent. Here is a link to the type of story I had in mind which suggests that even consultation is rare:
www.telegraph.co.uk/health/elderhealth/8829350/Elderly-patients-condemned-to-early-death-by-secret-use-of-do-not-resuscitate-orders.html

Why would you think I have not read the BBC story? It's short, shallow and hardly an astounding sample of reasoned thinking. My personal opinion of journalistic coverage of medical ethics stories is poor, but then again this touches on my professional competence so maybe that's what puts my back up at the poor level of investigative reporting.

It is true, what Booboo says. The grey area is consultation, and if this hasn't been done then it would appear legally it's an ethical failure and not a legal one.

We were consulted at every stage.

Consultation is a hard area, though, too, and some are far more skilled at it than others - we certainly found this to be the case when our child was in ICU, there were three doctors in particular who were quite unskilled at it. But it was there (thankfully three of the other doctors there are very gifted with it and our lead consultant is as well).

DNR isn't about quality of life but quality of death, from what I've come to understand about it. It's a decision to be made when medically, death is inevitable in the near future in any case, but may be made less dignified and even more painful and traumatic for the patient by life-prolonging procedures such as mechanical ventilation.

As while DS isn't specifically life-limiting, advanced dementia with evidence of decreasing organ functionality (PEG tube, bed bound) is.

It's a huge grey area because there are plenty of people who cannot see this for their loved ones. They beleive any life is of quality, and indeed it is, but there comes a point when death is in the near future when you need to decide what type of death is best for the patient and the quality of death is part of quality of life. Being on a vent is majorly traumatic for a patient, aside from one who is an advanced state of dementia, and sedating them to bypass that is beset with its own problems, as by-products of ventilation do indeed result in death in many who are already ill when they are ventilated.

Again, the error seems to be in lack of consulting the family and/or recording attemps to consult with them in the notes.

Gosh, imagine a news story being short.

Even the crappy ineffective CQC has noticed the law is being broken. "Last week, CQC said one in five NHS trusts it inspected were failing patients so badly that they were breaking the law, and expressed concern about standards at more than half of trusts." Although that wasn't entirely due to DNRs, they were part of that picture.

This isn't about patients demanding treatment that isn't warranted, it's an earlier part of the process. How can you ask for treatment if you aren't even told it has already been denied, in advance? This is about human beings having the right to be at least involved in decisions about their life and death.

Resuscitation is brutal and the outcomes are not necessarily good. But it is not the business of doctors to make an advance decision not to resuscitate based on prejudice and assumptions, in secret, without consulting the patient and family. We need a legal ruling to make that clear. One day we will look back on these sort of practices with the same sort of horror we feel when hearing about doctors who told mothers of disabled babies to 'put them away' and forget about them, go away and have another baby.

(FWIW I am not pro-resuscitation in all circumstances. When my 95yo Great-Aunt was dying, we asked the nurses about DNR orders in the hope that they had discussed it with her and would not be jumping up and down on her chest. Fortunately the staff at the Countess of Chester hospital were caring and competent and had discussed this with my Great-Aunt, who decided she did not want to be resuscitated. She died with dignity and we are extremely grateful to the medical and nursing staff who made sure that happened.)

'Resuscitation is brutal and the outcomes are not necessarily good. But it is not the business of doctors to make an advance decision not to resuscitate based on prejudice and assumptions, in secret, without consulting the patient and family. We need a legal ruling to make that clear.'

I agree.

Your posts on this thread have been extremely moving and informative, expat. How are you all? Extremely stupid question, but I can't think of a better way to phrase it, sorry!

I've seen doctors talk about a person with DS as though they were a dog. Not unkindly, just in that patronising way that assumes the person has no feelings or opinions of their own. A lot of doctors have absolutely no clue about disability and have horrendously outdated assumptions.

When the friend I mentioned brought a client of hers to the hospital with broken ribs the doctor asked her whether the client was in pain. Friend said "You should ask her," at which the doctor said "but she doesn't talk." Said client was quite capable of talking but had been quiet since she came in due to the pain in her ribs. So friend said calmly, "Yes, she can talk, she's just quiet from the pain." To which the doctor replied "But she has Down syndrome. And anyway I doubt she's in any pain anyway." So without knowing anything about the person he just assumed she couldn't talk and that she wasn't in pain. Now people with DS do tend to have a high pain threshold but anyone who's broken their ribs know it's pretty bloody painful. Friend, being quite bolshy, insisted on seeing another doctor. Unfortunately the client heard friend calling first doctor a prick behind his back and later called him it to his face Still, it was pretty good way of showing she could in fact talk :)

It's an area that most people read about in the press and immediately think of resuss in terms of CPR and don't realise what it encompasses or the potential effects of it on the patient, even if they are sedated to the point of coma.

Of course, had we all known the extent of the damage to her lungs we'd never have moved her to PICU and taken her home to die peacefully of the pneumonia that claimed her life. Indeed, about a month after A died, another AML patient came in, age 15, after relapsing a year post-successful stem cell transplant. She, with her family, made the decision to attempt further chemotherapy in order to try to remit her and, hopefully, have another transplant. BUT, being aware of the risks and slim chance of success, she was also able to make decisions about what to do in the event of severe infection because life-prolonging procedures were not a good option for her given her condition. Indeed, she got pneumonia following the round of chemo and, instead of going to PICU, died peacefully in the unit.

This scenario is a reality for many every day.

What was done for A was done when there was a reasonable chance of her recovery.

When there is not, however, and there are many situations in which is it not and she eventually became one of them, it's vital that the family are consulted and that it is made clear what DNR is about, because death is a part of life and its quality is equally important, IMO.

Even 'good' caring doctors may make assumptions about people with disabilities. I used to be on a committee and one of my fellow members had severe physical disabilities. A doc who was a friend of mine and with whom I'd worked once remarked that this guy's views trumped all the other laypeople 'because he has suffered'. FFS. Patronising in the extreme, both to him and all the other laypeople who this doctor didn't know very well - he had no clue about their life experience.

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

I know quite a few children with LDs who have PEGs. They're not the drastic life-saving measure some people consider them to be. Some children have them for their entire lives. They carry a risk of infection and can be painful but they don't usually signal the end. 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.

quite, Cailin and 2be2.