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alp227

(31,962 posts)
Thu Sep 13, 2012, 03:31 AM Sep 2012

Family of Down's patient sue hospital over DNR order

Source: The Guardian

An NHS hospital is being sued by a family who say doctors placed a "do not resuscitate" order on their relative, denying him potentially life-saving treatment, because he has Down's syndrome.

The unnamed family are bringing a legal challenge against a hospital in Kent where a doctor apparently decided staff should make no attempt to resuscitate the patient if he suffered cardiac or respiratory arrest, on the basis of his disability.

Lawyers for the family said a form added to the man's medical notes last September gave the reasons for no resuscitation as "Down's syndrome", "unable to swallow" (the man has a feeding tube in his stomach), "bedbound" and "learning difficulties".

The form, which said the decision should remain in force indefinitely, showed the doctor concerned had no discussion with the patient because the patient did not have mental capacity, said the lawyers.

Read more: http://www.guardian.co.uk/society/2012/sep/13/downs-patient-hospital-dnr-order

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Family of Down's patient sue hospital over DNR order (Original Post) alp227 Sep 2012 OP
Pneumonia, dementia, feeding tube...this poor guy is going to go through a lot more misery dkf Sep 2012 #1
I agree. Adding disabilities is a mistake, and claiming he could act because he couldn't speak. freshwest Sep 2012 #21
smacks of eugenics IMO azurnoir Sep 2012 #2
How so? harmonicon Sep 2012 #3
The family should have a say in this.... #1 I also agree with your post. secondwind Sep 2012 #4
I just don't know how simple any of this is. harmonicon Sep 2012 #5
Just because he is receiving nation health care does not give the state doctors the right to decide Vincardog Sep 2012 #26
No one every said anything about terminating someone's life. harmonicon Sep 2012 #28
Uhhhh; greiner3 Sep 2012 #6
Exceedingly chilling to have Docs decide when to end life...period. dixiegrrrrl Sep 2012 #7
What is over the top about my post? harmonicon Sep 2012 #8
You missed several points as to what a DNR is... rexcat Sep 2012 #9
Those definitions are about reproduction muriel_volestrangler Sep 2012 #13
The DNR decision was made based in no small part on this man being disabled azurnoir Sep 2012 #10
See my post #9. rexcat Sep 2012 #11
It's not a question of who lives and who dies... harmonicon Sep 2012 #12
Read "War Against the Weak" by Edwin Black. Hitler was not by any means the first to threaten jwirr Sep 2012 #15
No one here ever suggested killing anyone. harmonicon Sep 2012 #16
Withholding needed medical care is neglect if it is not legal. As a social worker for persons with jwirr Sep 2012 #18
It will certainly be curious to see how this case plays out. harmonicon Sep 2012 #19
Yes. I have seen exploitation. Usually for money. I knew when I first read this OP that we did jwirr Sep 2012 #20
The broader term of eugenics didn't confine itself to limiting reproduction. Nazis targeted them. freshwest Sep 2012 #22
Godwin, is that you? harmonicon Sep 2012 #24
That is not what I was responding to. Your post said: freshwest Sep 2012 #25
Sorry. harmonicon Sep 2012 #27
Thanks, we are cool. I can imagine that Europeans may be more sensitive to those freshwest Sep 2012 #29
No discussion with the patient? What about the patients legal guardians? This sounds very much like jwirr Sep 2012 #14
It sounds like the patient was in no place to discuss it. harmonicon Sep 2012 #17
I got my post in late, it looks like this has been well answered. freshwest Sep 2012 #23
 

dkf

(37,305 posts)
1. Pneumonia, dementia, feeding tube...this poor guy is going to go through a lot more misery
Thu Sep 13, 2012, 04:09 AM
Sep 2012

When we went through this same exact process with my uncle we were told that he was at the stage where this would keep happening...continued bouts with pneumonia due to inability to swallow properly (even his own saliva). They also suggested a DNR because the resuscitation process is traumatic and can lead to broken ribs, so pain along with the very strong likelihood of more drastic impairment to his atrophied brain.

From my experience I think this is about the Dementia and the shutting down of the brain more than the Downs but I'm no expert.

freshwest

(53,661 posts)
21. I agree. Adding disabilities is a mistake, and claiming he could act because he couldn't speak.
Thu Sep 13, 2012, 01:16 PM
Sep 2012

There was someone he was legally obliged to include in the decision, the parents. Down's is not the same as dementia, any more than a case of mental in capacity is confined to a case of brain disease, chemical imbalance or developmental disability. Many people with Down's Syndrome have jobs, marry and have virtually the same lives as other citizens, taking into consideration the health affects.

When a person is unable to speak for themselves in court or manage medical care, at least in the USA in some states, it is the family to whom the doctor should have been talking. Legally, they are bound to advocate for care, not the patient. This is a practice honored by guardianship law courts to protect those temporarily or permanently disabled to protect their rights.

The doctor was wrong in that respect, but the amount of suffering of the patient was possibly what was utmost in his mind. I know a number of people who have added DNR to their medical care documents for themselves or their wards. But many people do not sign DNR agreements in hopes that life will be worth living no matter how painful the resuscitation may be.

harmonicon

(12,008 posts)
3. How so?
Thu Sep 13, 2012, 05:38 AM
Sep 2012

You think a guy who couldn't get out of bed, couldn't communicate with doctors, and needed a feeding tube to live had a good likelihood of reproducing?

harmonicon

(12,008 posts)
5. I just don't know how simple any of this is.
Thu Sep 13, 2012, 07:21 AM
Sep 2012

Reading the article, the guy is actually alive and well - or as well as could be expected with his condition.

Apparently, the family was supposed to have a say in this, and that's part of the problem. Either they were unreachable at the time the order was put in place, or they weren't consulted. That said, I'm wary of giving people carte blanche over making decisions about a person's care who cannot make those decisions for themselves just because they are legal familial relations. If I were in that situation, I don't know if I'd rather my family or medical professionals make those sorts of calls.

These are complicated questions, but I think it's also worth noting that these orders were issued while this man was being cared for by the NHS. The family could have gone to private doctors and hospitals and avoided the NHS altogether, but they chose to trust NHS professionals to put in this fellow's feeding tube. Why not trust them in other medical matters?

Vincardog

(20,234 posts)
26. Just because he is receiving nation health care does not give the state doctors the right to decide
Thu Sep 13, 2012, 02:53 PM
Sep 2012

when to terminate his life.
Your argument that "The family could have gone to private doctors and hospitals and avoided the NHS altogether",
sounds like elitist BS to me. Are the rich the only ones entitled to make healthcare decisions?

harmonicon

(12,008 posts)
28. No one every said anything about terminating someone's life.
Thu Sep 13, 2012, 09:04 PM
Sep 2012

If I tell you, "if I get him by a bus and am dead apart from some way that scientists can keep a bit of my brain alive in an electrified jar, please don't let them do that and just let me die," it doesn't mean you should push me in front of a bus.

No, the rich are not the only ones entitled to make healthcare decisions. Healthcare is a human right. Healthcare-wise, the NHS did everything this family wanted, completely to their satisfaction. Some decisions were made on paper that they disagreed with, but that all go corrected without it actually playing a role in provided medical care. At this, their reaction is not to be thankful that they live in a country with one of the greatest healthcare systems in the world, but to sue the NHS - because a decision was made on paper with which they didn't agree, though it played no impact.

 

greiner3

(5,214 posts)
6. Uhhhh;
Thu Sep 13, 2012, 07:43 AM
Sep 2012

I think you are missing the point.

Eugenics does not have a static definition;

"Eugenics is the study of or belief in the possibility of improving the qualities of the human species or a human population, especially by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics)."

"But,

"Eugenics...persons having genetic defects or presumed to have inheritable undesirable traits...(and) have inheritable desirable traits..."

"Down's Syndrome CAN be inherited, although MODERN knowledge (verses the previous common misunderstanding of the condition) of genetics is such that VERY FEW cases are. The overwhelming majority of Down's Syndrome individuals' is a single point mutation that produces, "More than 90 percent of the time, Down syndrome is caused by trisomy 21. A child with trisomy 21 has three copies of chromosome 21."

It is azurnoir's interpretation of the OP that both practices are ABHORRENT, ESPECIALLY in his qualification;

"and that goes beyond discrimination..."

One of the doctor's statements, ""Down's syndrome",... and "learning difficulties," qualifies as DESCRIMINATION on the basis of;

"...by persons having genetic defects or presumed to have inheritable undesirable traits...(and) have inheritable desirable traits..."

Down's Syndrome CAN be inherited, although the MODERN knowledge of genetics is such that VERY FEW cases are. The overwhelming majority of Down's Syndrome individuals' is a single point mutation that produces, "More than 90 percent of the time, Down syndrome is caused by trisomy 21. A child with trisomy 21 has three copies of chromosome 21."

Of the remaining 10%, Down's syndrome is not caused by heredity but by other factors listed above.

So again, azurnoir's use of the term, 'eugenics,' IS apt in this case.

With that said, I think you're post is over the top.

dixiegrrrrl

(60,010 posts)
7. Exceedingly chilling to have Docs decide when to end life...period.
Thu Sep 13, 2012, 09:16 AM
Sep 2012

Not supposed to be a dr. decision in the first place.
That is what the Hippocratic Oath was supposed to be about.
Anyone at all familiar with the Eugenics movements would realize what slippery and tragic slope has developed from it.

harmonicon

(12,008 posts)
8. What is over the top about my post?
Thu Sep 13, 2012, 09:30 AM
Sep 2012

This person has no ability to tell doctors his wishes about this. In their opinion, his quality of life is/was such that, if further tragedy were to befall him, it would be better to not make him suffer through his myriad illnesses any longer. It's not as if this is a healthy man with DS. He's seriously ill in many other ways. I remember how difficult it was when my grandmother made the decision about a DNR order. If she hadn't had that capacity and the choice were up to me, I don't know what I would have done.

I trust doctors. If I were in a similar situation, I'd like to think that I could trust the medical professionals providing my care to make similarly hard decisions. To me this reads less like eugenics than Terri Shiavo pt. II.

rexcat

(3,622 posts)
9. You missed several points as to what a DNR is...
Thu Sep 13, 2012, 10:20 AM
Sep 2012

If the patient were to have a cardiac arrest or pulmonary arrest what is the likelihood of the patient surviving in the short term or long term after the event. Quality of life is also an issue post resuscitation. I worked in the clinical setting most patients did not survive the event and if they did they were usually ventilated and ended up dieing down the road.

Since this person was not "competent" the legal guardian of this person should have been consulted and those wishes respected. This is where the attending physician erred. If the person is a ward of the state then the doctors would have the right to make that decision. As it turns out the patient did not require any resuscitation while in the hospital and is currently alive. It would appear that the patient received quality care with prejudice to his Down's Syndrome and was able to be discharged to a long term facility.

I am of the belief that prolonging the life of a person can be inhumane in certain circumstances but that is a personal view that I hold. Since most cases of resuscitation don't have a favorable outcome in hospitals, especially in the case of debilitated patients, I would have put a DNR for a loved one who was in a similar situation based on my knowledge.

Of course I am looking at this beyond the hype of the article.

on edit: I don't think it has anything to do with "eugenics." I think the physicians were looking at it purely in the clinical setting and their experiences as physicians.

muriel_volestrangler

(101,155 posts)
13. Those definitions are about reproduction
Thu Sep 13, 2012, 10:44 AM
Sep 2012

and harmonicon's post was about the chances of them ever having children, which does seem extremely unlikely in their state (and the article tells us he is over 50; it would have to be an incredible recovery from whatever future event he would need resuscitation from to get to the point where he can have sex with someone, and consent to it). I don't think this is about anyone trying to stop the man having children. It's not 'eugenics'; you could try to argue it's 'euthanasia'.

azurnoir

(45,850 posts)
10. The DNR decision was made based in no small part on this man being disabled
Thu Sep 13, 2012, 10:21 AM
Sep 2012

if you comfortable with decisions as to who gets to live and who dies made on this type of basis then so be it

harmonicon

(12,008 posts)
12. It's not a question of who lives and who dies...
Thu Sep 13, 2012, 10:40 AM
Sep 2012

but of who lives and who dies after a point where "life" may not be worth living. These people were entrusted with his care. This is one decision they made about his care. The legal case is over whether or not they did everything required to ensure that they were the legally appropriate people to make these decisions.

I can only hope that if I were in such a terrible state that doctors would have the best intentions for my quality of life. I simply can't imagine a doctor in that position making a decision callously. If the doctor was not in a legal position to do so is now a matter for the courts, I guess.

While no doctor ever really decides who lives and who dies, I would be comfortable with letting NHS doctors make decisions about my healthcare. All of my experience with the NHS has led me to believe that their doctors are both qualified and caring.

jwirr

(39,215 posts)
15. Read "War Against the Weak" by Edwin Black. Hitler was not by any means the first to threaten
Thu Sep 13, 2012, 11:52 AM
Sep 2012

disabled people. As to what he could not do - take a look at the persons who are now visible in many communities. Couldn't get out of bed - that is what a lift is for when transferring a person to a wheelchair. Needed a feeding tube - that is what is used when someone like my daughter has a severe digestive disorder. Can't communicate - there are thousands of persons who a developementally disabled who have guardians because they cannot communicate. And that is just the beginning of what occurs when one is disabled. We cannot kill all of them due to neglect if we still want to call ourselves a descent nation.

harmonicon

(12,008 posts)
16. No one here ever suggested killing anyone.
Thu Sep 13, 2012, 12:03 PM
Sep 2012

My grandmother asked not to be resuscitated. She didn't ask to be killed.

Here, for the record, I'll let you know, though everyone who knows me personally would know: if I'm ever so mentally incapacitated that I can't make decisions for myself and have a feeding tube, I don't want to be freakishly kept "alive" for the perverse pleasure of others should my body announce to the universe that it's death time.

I learned at an early age that my cousin with Down's Syndrome died because she was sick, not because Hitler or one of his surrogates had some grand eugenics plan.

jwirr

(39,215 posts)
18. Withholding needed medical care is neglect if it is not legal. As a social worker for persons with
Thu Sep 13, 2012, 12:16 PM
Sep 2012

disabilities I have come across at least one other case like this. There was a legal DNR on the patient who got an infection - the doctor refused to give anti-bio-tics. I the client had died this doctor would have been wrong. As it was we stepped in and explained the family did not want to go that far.

My real problem is that the DNR was not put into place by a court ordered guardian who is liable for the patients legal decisions. I guess this comes from my own background of having been a part of a family that was a victim of the Eugenics movement and having seen first hand what went on during this movement inside the institutions. I get very upset when the weak are not given some real protections. As I said I would like to know what the doctor was thinking. Many health care professionals have little education in working with the developmentally disabled and see them as hopeless. That too comes from experience both as a social worker and a parent. I never left my daughter in the hospital alone - slept in her room 24/7 so that I could know what was happening.

harmonicon

(12,008 posts)
19. It will certainly be curious to see how this case plays out.
Thu Sep 13, 2012, 12:29 PM
Sep 2012

What we have right now is the side of the story from the legal guardians and what is available from public records. The medical care-givers involved weren't interviewed for the article.

I can fully understand caring about the weak, but what about those who would exploit the weak for their own perverse sense of power? I'm not saying that that's what's going on here, but I imagine you can bring to mind cases where that is what happened.

We would all like to know what the doctor was thinking, but I can't imagine an instance where s/he wasn't thinking about the best interests of the patient. Remember that NHS doctors care for everyone regardless of income - (though this is conjecture) I imagine that they have more experience with a variety of types of patients than most doctors in the US do.

jwirr

(39,215 posts)
20. Yes. I have seen exploitation. Usually for money. I knew when I first read this OP that we did
Thu Sep 13, 2012, 12:56 PM
Sep 2012

not know the whole story. Whatever we are going to have to trust the courts to make this case a point of decision in future cases. I am also glad this case is in a country that does care about people who are disabled.

freshwest

(53,661 posts)
22. The broader term of eugenics didn't confine itself to limiting reproduction. Nazis targeted them.
Thu Sep 13, 2012, 01:45 PM
Sep 2012

Because they were looking for efficiency, the appeal was made to voters that their care was costing them tax money. Which sounds familiar to what the anti-entitlement folks here preach, just not so directly. They are getting more forward, though, with the popularity of followers of Ayn Rand. These folks would definitely be first on the list of 'parasites' to be eliminated from society.

As the Nazis were taking power, they removed the human rights provisions of the Weimar regime and left the League of Nations. The parallels between the demagoguery of the American right against assumed human rights in the Constitution and the John Birch Society (Koch founded) against the USA membership in the United Nations is too close for comfort. It's now morphed into the CT culture in the patriot movement. At the same time they push Pro-Life as encompassing all human beings, they remove the social safety net such as Germany had in place prior to the Nazis. Since their defeat, they have been restored and are a part of social democracies. There were cities in the Netherlands that took in the disabled from Germany who were rescued from Nazi eugenics.

The poster below is one of the Nazi appeals to the public about the cost of entitlements under the Weimar regime. It would appeal to Teabaggers who don't have any disabled people in their families. They always complain how many hours they have to work to support the disabled and other bums, as Rush tells them. There is nothing new about this form of propaganda.



http://en.wikipedia.org/wiki/Action_T4

http://en.wikipedia.org/wiki/History_of_Germany#Establishment_of_the_Nazi_regime

As I have attempted to show, eugenics is not just about the next generation. There is an obvious element of eugenics if you are familiar with the terms used to enforce a DNR on this patient. Some of the things he is suffering from are part of other conditions that do not affect the disabled. That he brought up the disabilities more than once, is troubling. This is also not the first case in which parents have disagreed with the decision of doctors in the UK on the treatment of a developmentally disabled person.

harmonicon

(12,008 posts)
24. Godwin, is that you?
Thu Sep 13, 2012, 02:04 PM
Sep 2012

Protip: everything you dislike doesn't = Hitler.

The NHS saved my life and the lives of many others I care about.

If you had taken the time to read the article, you'd know that the parents of this poor man were no longer taking care of him.

Go vote for whatever teabagger is running ing your district if you're lusting so hard for Terri Shiavo pt. II

freshwest

(53,661 posts)
25. That is not what I was responding to. Your post said:
Thu Sep 13, 2012, 02:37 PM
Sep 2012
You think a guy who couldn't get out of bed, couldn't communicate with doctors, and needed a feeding tube to live had a good likelihood of reproducing?

It appeared to be a flippant response to those in this country who are considered about trends and how it affects us here.

You memtioned reproduction. This was not about reproduction, but a person alive now.

I responded to two other posts so you might not have gone off on me if you had read them. No, I ddin't go to the link, and several other posters did not and did not equate the NHS or any of the Social Democracies, which I adore, with Hitler.

Eugenics has been practiced in the USA in the past, not only with the disabled, but the poor and minorities, and is also being called for by some in this country now. What the Paul Ryans of this country want is to set us against each other on the basis of cost efficiencies.

I do not care about the Shiavo case and live in possibly the most liberal district on the West Coast. I don't like Teabaggers or the Pro-Lifers at all so where you come to your conclusions on my opinions is beyond me.

As far as the snark about Godwin, sometimes a political party such as the Teabaggers (NOT NHS) is known by the company it keeps. Nowhere did I denigrate the NHS or the UK. I wish we had their system, and my life would be better with one.

Thom Hartmann has detailed the Koch family connections, others the Bush family connections. These people may not be Nazis, but they are fascists by defintions FDR and Mussolini gave. Did I call the doctor or NHS Nazis anywhere?

No, I didn't. Don't worry, we're done here.

freshwest

(53,661 posts)
29. Thanks, we are cool. I can imagine that Europeans may be more sensitive to those
Thu Sep 13, 2012, 09:28 PM
Sep 2012

Comparisons. But there is more evidence that some of the Third Reich's ideas on improving the species came from the USA and not the other way around.

Europeans were the ones who suffered in the most in WW2, we cannot imagine what it was. I have friends in Europe who have told me a lot, and I respect the fact that Europeans have learned from the past. They learned the hard way, over centuries of warfare and defining what human life was worth.

I am afraid the voices I have argued with here, saying these people need to go affects me too. And I do not want to see the USA 'learn the hard way' as Europe did before it came out of WW2 and forged a better path than we have done here. I don't know if it's essential, but it seemed some years ago that we would make the leap to a mixed social democratic society and economy.

We need the inspiration of people who have achieved this goal, and have had notable people from the UK give us guidance, but it's almost impossible to over ride the media. I am glad to be here and chat with you.

Peace Out.

jwirr

(39,215 posts)
14. No discussion with the patient? What about the patients legal guardians? This sounds very much like
Thu Sep 13, 2012, 11:42 AM
Sep 2012

my daughter who is now 55 years old and as the legal guardian I make all medical decisions for her. She does have a DNR but ONLY in terminal situations. There are many patients with Downs that still enjoy life even under these situations. I would be interested in knowing what this doctor was thinking.

harmonicon

(12,008 posts)
17. It sounds like the patient was in no place to discuss it.
Thu Sep 13, 2012, 12:11 PM
Sep 2012

Apparently, he simply does not have the capacity to do so.

Sadly, it sounds like your case put into the future. This guy's parents cared for him for 50+ years, and now they're gone or can't provide the care.

He has serious health problems apart from his DS. It's unclear if the decision was made without consulting his current legal guardians or because they did not respond or could not be located. That's what this case is about: who should make these medical decisions?

The answers will come out in court, but in any case, I can't imagine that the doctor wasn't thinking about the best wishes of the patient.

It's a lot easier to get angry about the lives of strangers than it is to live in a world of grey, but grey is where most things exist.

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