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I disconnected my grandmother after 5 years of Alzheimer. The last two ones, she was just in a bed, like a vegetable. And she lasted so much in a bed because of my mother.
Thats not being alive. If the BEST case scenario was making the child to endure 4-5 years as a vegetable... then the medics have do the right thing.

 Galas wrote:
I disconnected my grandmother after 5 years of Alzheimer. The last two ones, she was just in a bed, like a vegetable. And she lasted so much in a bed because of my mother.
Thats not being alive. If the BEST case scenario was making the child to endure 4-5 years as a vegetable... then the medics have do the right thing.

Aye I've seen first hand what it did to my Grandfather.
You would not let a dog suffer so. But a Human.

Sadly death was a mercy. There was not much left at the end.

Sometimes life is very much not the best thing.

My grandmother suffered a stroke while vacationing last year in Germany. She didn't recover and ended up in a coma. The only options were highly risky surgery that apparently the doctors present struggled to explain in English to my grandfather (he doesn't speak German and I guess it's hard to translate medical sutff between languages), or pulling the tube and letting nature take it's course. The later was ultimately chosen because she'd said that if she was ever in a coma she didn't want it to be dragged out, but it fethed my grandfather up pretty bad for most of the past year.

 LordofHats wrote:
My grandmother suffered a stroke while vacationing last year in Germany. She didn't recover and ended up in a coma. The only options were highly risky surgery that apparently the doctors present struggled to explain in English to my grandfather (he doesn't speak German and I guess it's hard to translate medical sutff between languages), or pulling the tube and letting nature take it's course. The later was ultimately chosen because she'd said that if she was ever in a coma she didn't want it to be dragged out, but it fethed my grandfather up pretty bad for most of the past year.

Honestly iv already told my fam that if i ever became a vegi just to pull the plug. this might change in the future if medical tech becomes good enough to fix most problems pretty quickly.

Same. I should probably have it in writing or something, but unless the condition is one with a higher than 50% chance of recovery I've said just end it. Not interested in having that gak dragged out.

EDIT: of course this is all irrelevant;

Browsing Facebook on this subject, it's interesting to see so many Americans are up in arms about social care and the apparent evils of social care, especially when many of them (including at least one congressman, from my brief foray into it) are ignorant of any actual specifics of the case and would rather score political points.

I think the most pertinent point that came out of all of this, was the part where the American Doctor, admitted to essentially not having seen any scans and whatnot, gave the parents false hope, which in turn lead them to go to court over the whole thing.

http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

PDF thingy is where it all is.

 Mozzyfuzzy wrote:

http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

PDF thingy is where it all is.

Lots of important stuff in there, but this is pretty key:

'When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.'

nfe wrote:

 Mozzyfuzzy wrote:

http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

PDF thingy is where it all is.

Lots of important stuff in there, but this is pretty key:

'When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.'

Now that is definitely a new angle on the case...

I'm gonna have to read that PDF later.
The situation makes more sense why they took stance they did.

nfe wrote:

 Mozzyfuzzy wrote:

http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

PDF thingy is where it all is.

Lots of important stuff in there, but this is pretty key:

'When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.'

So it's like Andrew Wakefield all over again?

No, Andrew Wakefield falsified evidence to promote his mmr work and carried out unnecessary invasive procedures like colonoscopies on children.

This guy in America was throwing out hope of a treatment that was far away from human testing stage, and having not seen much in the way of medical data on he case. He gave hope to a couple of parents without a real grasp of the case notes, what makes it dubious is if he is personally invested in the procedure he wanted to experimentally perform.

But he's no Wakefield, who is a proven fraud and whose actions have led to many children being harmed by decreased vaccination rates.

So the Gards are going back to the High Court yet again this afternoon. News not been clear on exactly why, yet.

nfe wrote:
So the Gards are going back to the High Court yet again this afternoon. News not been clear on exactly why, yet.

Strange, they have nothing to gain from courts now.
I mean they gave up the legal battle, the judge will have by default rules to the Hospital.

Edit. The Mirror has a live update.
Its a hearing based on if practical and to take him home or he remains at the hospital.
Seems to centre on practicality of arrangements.

Its if the hospital portable gear will fit through the house door.
Seems a valid question.

Also there offering to pay costs involved.

Hospice has been suggested if home not a doable answer.

Heh, so "government" is evil for disallowing a speculative treatment that admittedly would do nothing to reduce catastrophic damage but no word on the Dr. who pushed it to desperate parents without bothering to examine the patient or the records and retained a financial interest in the treatments.

Self righteousness at its finest.

Edit above with up to date info on what the current court hearing is about.
As of 14.30 GMT

 jhe90 wrote:

nfe wrote:
So the Gards are going back to the High Court yet again this afternoon. News not been clear on exactly why, yet.

Strange, they have nothing to gain from courts now.
I mean they gave up the legal battle, the judge will have by default rules to the Hospital.

Edit. The Mirror has a live update.
Its a hearing based on if practical and to take him home or he remains at the hospital.
Seems to centre on practicality of arrangements.

Its if the hospital portable gear will fit through the house door.
Seems a valid question.

Also there offering to pay costs involved.

Hospice has been suggested if home not a doable answer.

Imagine having to go to a hospice with a baby. Bleak. Fingers crossed they get home.

nfe wrote:

 jhe90 wrote:

nfe wrote:
So the Gards are going back to the High Court yet again this afternoon. News not been clear on exactly why, yet.

Strange, they have nothing to gain from courts now.
I mean they gave up the legal battle, the judge will have by default rules to the Hospital.

Edit. The Mirror has a live update.
Its a hearing based on if practical and to take him home or he remains at the hospital.
Seems to centre on practicality of arrangements.

Its if the hospital portable gear will fit through the house door.
Seems a valid question.

Also there offering to pay costs involved.

Hospice has been suggested if home not a doable answer.

Imagine having to go to a hospice with a baby. Bleak. Fingers crossed they get home.

Judge asked for a answer on question of portable gear getting in the house which is fair question.
Yeah that's bleak, though guess questions like that are a fair reason to askin a hearing.

Back up plan coming in at a family members house.
Not ideal but beats a hospice.
Need a specialist team to follow so I guess that where room problem was also raised. Need room for them to have privacy but also a medical team, and gear on top.

GOSH admit that finding a capable Hospice is not easy.

ICU care advanced. There mainly questions on practical, not blocking.
Judge making choice in day pr two if both sides cannot agree.

Judge saying awful to say but he asking that a timetable and a decision is made regarding timing and such.
Fair points.
Prepared to make a court order if both sides present the required information, and offering mediation Services to try and ensure a agreement if parents agree to allow a 3rd party to try and make sure arangementd are dignified and try and get a agreement on things in the case.

Deadline by 2PM tomorrow for discussion between Grads and GOSH to answer the sad questions raised and work out answers for the court hearing.
Seems to want more information to make a judgement based on both sides cases.

I'm not sure what is bleak or bad about a hospice. A hospice that specialises in end of life care is a good place for anyone who needs it. My mother worked for many years as a palliative care nurse for the elderly. They try and provide the best environment they can, keeping the medicalisation and mechanisation of the last hours to a minimum whilst providing support for the person and the family in a way that can't be done at home. Hospices for palliative care for the young are filled with dedicated and skilled nurses. They have to be as it's not a job everyone can do.

 Steve steveson wrote:
I'm not sure what is bleak or bad about a hospice.

They're specifically places to die. Everyone there is either there to die, care for people who are there to die, or visiting someone who is there to die. There's no amount of brilliant care, fantastic facilities, and dedicated staff that can get around that. It's one thing if you're there as/with someone who has had a decent shift, but having to take an infant is rotten.

My heart goes out to the parents like everyone else on here, nobody should face having to bury their child.
My son was born in 2012, two months premature, as soon as he was out he was taken away to the special care so they could get to work on him all the while my wife is seriously il and drugged up to the eye balls.

After an hour I get to go down to the unit to meet the little guy only to told to prepare for the worst, it was the most crushing moment of my life. After a week my partner is able to come but it took another 5 weeks to get my son home and even then there were visits to the hospital every two days to get him checked out. As I said that was five years ago and has just finished his first year in school and Jesus I thank god everyday how lucky I was that he was fine in the end.
I've never been so great full to a group of people like I have to the NHS team that looked after him 24hrs a day for all that time.

nfe wrote:

 Steve steveson wrote:
I'm not sure what is bleak or bad about a hospice.

They're specifically places to die. Everyone there is either there to die, care for people who are there to die, or visiting someone who is there to die. There's no amount of brilliant care, fantastic facilities, and dedicated staff that can get around that. It's one thing if you're there as/with someone who has had a decent shift, but having to take an infant is rotten.

Aye the live feed seems the judge seemed to just want to make sure things where done correctly, care was provided as required and practical issues was properly addressed..

Its sad, but at least someone os trying to make sure everything is dealt with in a dignified way, and make sure that Charlies interests are best served in which ever place he ends up.

And lastly, yeah, NHS can and does regularly pull off miracles, sadly not in every case. And that they might get flak at times but the staff are deadicatd, a highly trained professional's

Latest update.
They resumed and managed to get the various parties, specalists and care experts and lawyers in hand.
There discussing how best to move forward and also what is likely the most practically able sad ending to this case.

It sounds harsh but I cannot help but think judge has had a few fair points, and tried to least bring about a answer to case that both can agree on.
Maybe they also thought the court hearing might keep things less heated and more likely to achieve a more agreeable end to case.

Someone did need to ask the questions he did, and it might sound diffrrnt from the judge. Its a sad ending, but it does not have end like a circus.

Stated as not wanting people to leave without some form of agreement or understanding being reached.

nfe wrote:

 Steve steveson wrote:
I'm not sure what is bleak or bad about a hospice.

They're specifically places to die. Everyone there is either there to die, care for people who are there to die, or visiting someone who is there to die. There's no amount of brilliant care, fantastic facilities, and dedicated staff that can get around that. It's one thing if you're there as/with someone who has had a decent shift, but having to take an infant is rotten.

That they may be, but they are also places that provide care, support and as much dignity and relief from suffering as they can for the dying and the family. Children's palliative hospices do everything they can to provide the best support they can to all involved. No matter where someone goes when they are in the final stages of a terminal illness they are their to die. My experience has been that good support and acceptance of this fact before death by the friends and family makes the grieving and loss much easier to accept.


Automatically Appended Next Post:

 xKillGorex wrote:
My heart goes out to the parents like everyone else on here, nobody should face having to bury their child.
My son was born in 2012, two months premature, as soon as he was out he was taken away to the special care so they could get to work on him all the while my wife is seriously il and drugged up to the eye balls.

After an hour I get to go down to the unit to meet the little guy only to told to prepare for the worst, it was the most crushing moment of my life. After a week my partner is able to come but it took another 5 weeks to get my son home and even then there were visits to the hospital every two days to get him checked out. As I said that was five years ago and has just finished his first year in school and Jesus I thank god everyday how lucky I was that he was fine in the end.
I've never been so great full to a group of people like I have to the NHS team that looked after him 24hrs a day for all that time.

SCUB nurses do an amazing job. My son was only in SCUB for a short time, but I could not have asked for anything more from them. Both the care they gave him, and the care they gave me and my wife. I'm so glad I got to go with him from the delivery suit to the SCUB. I don't think I could have waited an hour to see him! I sympathise with you having to wait. It must have felt like an eternity.

I remember asking them if am could touch him as he was in the incubator and taking so many photos over that night. I'm so glad my wife had her phone with her. I sent her so many photos as she couldn't walk.

I am frankly a bit disgusted with a number of these arguments defending the decision to let this baby die. Do I think this would have saved his life? No; But the parents who raised the money independently should have at least been given the chance. I don't know if any of those who supported this decision have children but I can tell you that when you do, you will attempt to move heaven and hell to get them anything they need to survive.

On the medical side of this equation, no this wouldn't have saved his life but this was a willing participant in a study that would have yielded untold amounts of information in regards to the new treatment/drug and could have saved lives down the line.

I fail to see any downside to allowing these parents the right to attempt to save their babies life. What I do see though is a very big and real reason why I will fight against National Healthcare in the US.

This has nothing to do with national healthcare system. This is the exact same choice doctors make every day throughout the world. Our healthcare system had nothing to do with it. I suggest you read the statement by GOSH.

He was not a willing participant in anything, and trying an untried treatment on a baby for the information would be deeply unethical.

As about, I have a child, of about the same age. I love him more than anything, and I could not imagine letting him suffer like that.

Hospices are a place of death that's true, that's their purpose by design. And I don't know how Hospice is set up in the UK.

But Hospice is also a place where the stigma of death is absent, where mourning is allowed to begin before death is actually here. Where family and friends are able to grief with the dying person present, and begin the long process of healing much earlier than many who still focus on healing rather than comfort.

Hospice gives dignity, comfort, and they truly have an ability to focus on the whole family and they will be able to provide emotional care to the family while providing palliative care to the child.

Hospice is so much more than "go there to die" or "we've given up, so death it is". Hospice doesn't stop the treatment to provide comfort and relief to the patient, it just stops the treatment that attempts to cure (treatments that often make the person suffer more in their final time than they would without, often for marginal benefits). It's not a decision to die, it's a decision on how so spend your final time while still alive. In the US we have hospice homes, hospice units in hospitals, and also hospice services that will assist patients who choose to spend their final moments at home.

On the "have more empathy d-usa" front: My youngest daughter went to the NICU because she could not breathe when she was born, and was placed on the vent. It made me feel helpless and useless that I was unable to do anything for her as a medical provider, and I was mentally preparing myself for the reality that she could be dead before she even had a chance to experience her first sunrise. It was a horrible feeling to try to come to terms with the fact that your child can be dead before you even had a chance to know her, or for her to know you. She came so close to death, and I came so close to loosing my child, but we were lucky. So I know what it feels like to anticipate the death of your child, I have the compassion and empathy for those who are watching the death of their family member. I get it. But I also took an oath to speak for the voiceless, and when it comes to patients that is my focus.

For the record, I think hospices are a good thing in most cases for most people, but I also think they lose much of their use when you are dealing with an infant or young child.

SemperMortis wrote:
I am frankly a bit disgusted with a number of these arguments defending the decision to let this baby die. Do I think this would have saved his life? No; But the parents who raised the money independently should have at least been given the chance. I don't know if any of those who supported this decision have children but I can tell you that when you do, you will attempt to move heaven and hell to get them anything they need to survive.

At the risk of repeating the first three pages of the thread, themselves full of repetition:

On the medical side of this equation, no this wouldn't have saved his life but this was a willing participant in a study that would have yielded untold amounts of information in regards to the new treatment/drug and could have saved lives down the line.

An 11 month old child cannot be a willing participant. It is not morally acceptable to use a child as a guinea pig on a totally untested treatment. Extending the child's life may well be extending extreme suffering.

I fail to see any downside to allowing these parents the right to attempt to save their babies life.

The possibility of forcing a child to continue to live in what may be very extreme and continual pain.

SemperMortis wrote:
I am frankly a bit disgusted with a number of these arguments defending the decision to let this baby die. Do I think this would have saved his life? No; But the parents who raised the money independently should have at least been given the chance. I don't know if any of those who supported this decision have children but I can tell you that when you do, you will attempt to move heave and hell to get them anything they need to survive.

On the medical side of this equation, no this wouldn't have saved his life but this was a willingly participant in a study that would have yielded untold amounts of information in regards to the new treatment/drug and could have saved lives down the line.

this was a baby who had no personal agency to willingly or unwillingly participate in anything. This wasnt a study, it wasnt a trial, it was a blind hail mary attempting to use a screwdriver as a hammer.

This treatment was not designed, intended, tested or expected to be used on someone with this child's set of circumstances.

It was "we'll try anything because we're desperate and this was a thing had some of the same words our doctors used, it wont reverse any existing damage thats basically terminal itself, but lets do it because grief is pushing us to try anything!" type deal.

I fail to see any downside to allowing these parents the right to attempt to save their babies life.

aside from the trauma of heaving a terminally ill child to the other side of the planet to undergo major medical procedures in the hope of squeezing a couple extra years of life out of a child who now (and would continue to) suffers from seizures, severe brain damage, unable to move their limbs, etc.

What I do see though is a very big and real reason why I will fight against National Healthcare in the US.

except this had zero to do with national/socialized healthcare, this was medical professionals bringing a medical ethic issues through the court system. Happens in the US with some frequency, such as when parents refuse life saving blood transfusions on religious grounds.

Essentially, if you recall scenes in movies where someone is trying CPR long after the point where it is clear there's no point and someone lays a hand on their shoulder and says "enough", thats whats happening here.

SemperMortis wrote:
What I do see though is a very big and real reason why I will fight against National Healthcare in the US.

This happens every day in the US, in hospitals run by the Government, Religious Hospitals, Non-Profit Hospitals, and For-Profit Hospitals. The United States withdraws treatment from patients against the wishes of family members every single day, using the same process that was utilized in this case.

 d-usa wrote:

SemperMortis wrote:
What I do see though is a very big and real reason why I will fight against National Healthcare in the US.

This happens every day in the US, in hospitals run by the Government, Religious Hospitals, Non-Profit Hospitals, and For-Profit Hospitals. The United States withdraws treatment from patients against the wishes of family members every single day, using the same process that was utilized in this case.

How many parents in US could afford 8 months plus of high level ICU care 24/7 and services of a 2 international Doctors, elite medical teams and a specialised hospital..

 d-usa wrote:

SemperMortis wrote:
What I do see though is a very big and real reason why I will fight against National Healthcare in the US.

This happens every day in the US, in hospitals run by the Government, Religious Hospitals, Non-Profit Hospitals, and For-Profit Hospitals. The United States withdraws treatment from patients against the wishes of family members every single day, using the same process that was utilized in this case.

This. It's nothing special about the NHS. Every time somebody uses this argument, it really shows the lack of understanding in how healthcare actually works.

 jhe90 wrote:

 d-usa wrote:

SemperMortis wrote:
What I do see though is a very big and real reason why I will fight against National Healthcare in the US.

This happens every day in the US, in hospitals run by the Government, Religious Hospitals, Non-Profit Hospitals, and For-Profit Hospitals. The United States withdraws treatment from patients against the wishes of family members every single day, using the same process that was utilized in this case.

How many parents in US could afford 8 months plus of high level ICU care 24/7 and services of a 2 international Doctors, elite medical teams and a specialised hospital..

Unrelated and anecdotal:

My grandmother is visiting from Germany and fell on Friday and was taken by EMS to a hospital here. She had international coverage on her German insurance plan, and that information was given to the hospital. While in the ER, someone from administration was telling my family members there that unless they are putting down a cash deposit or a credit card, they would stop treatment and discharge her from the ER. When it became clear that she required admission it changed to them my family "she can be admitted, but she won't be able to be discharged unless there was a cash deposit or credit card on file".

At this point I called them to let them know that we'll be forwarding this interaction to CMS and Joint Commission to investigate an EMTALA violation, and that's when everybody stopped harassing my family about payment.