Doctors playing God

[DonPeffers]

Great Ormond Street Hospital (acronyn GOSH is wholly appropriate IMO) have refused Charlie Gard's parents permission to take him home to die (or to the US for a new experimental treatment) and are involved in a lengthy costly legal battle with his parents. Anyone donating to GOSH hopes the funds will be used to save children and not used for court costs to end a life.

Doctors need to remember they are not infallible as demonstrated in the case of https://www.thesun.co.uk/news/2859927/ashya-king-cancer-free-and-back-at-school-after-proton-beam-therapy-brain-tumour-treatment-row-with-nhs/ where Southampton hospital doctors refused permission for the parents to take their child to Prague for proton beam cancer treatment which has cured him. At the time UK had no such equipment but a machine has recently arrived. Police were sent after the parents after they removed their child.

Following Michael Schumacher's dreadful skiing accident on 29Dec2013 he was taken to a private French hospital then transferred to Germany (IIRC) before being transferred home for a hoped for recovery which very sadly has not happened and it seems MS will remain in a near vegetative state. However his family, after over 3 years, are not ready to agree his life should be ended.

Is it the case in the UK that once you have entered a State hospital unless you can speak for yourself and request to be discharged then no one else, even with Power of Attorney, can enforce such discharge?

The Hippocratic Oath meaning "do no harm" surely needs to be replaced with " if you cannot do any good then get out of the ----ing the way".

[Thrustyjust]

I believe that the child should be given the chance. But as said on the TV this morning. This drug hasnt 'really' been tested on humans but mice only, allegedly. If he is in a state of massive brain damage then the prognosis is pretty grim for all concerned. In some ways, GOSH , as I am aware is thinking more of the child than maybe meets the eye of the media. America is willing to help and if the courts agree, he should be given a chance, as long as the parents agree that it might not work. 

[jeff oakley]

It is indeed a very sad case but to say Doctors are playing god is disingenuous to those in the medical profession. This child by any rational judgment is only alive because the machinery and the skill of those involved in his care and without this he would have already been dead.

To compare the two case you have is wrong, the first case was a disagreement of what was the best treatment and it is conceivable that the recovery would have been the same doing what the hospital recommended, he has not been cured by the way, there is still a long way to go there and that child could walk talk breath unaided with full brain function.

Sadly Charlie Gard has none of those functions and from everything I have read it is the right decision to withdrawn the machinery that keeps him alive. The parents are understandably upset and have done what they feel is right but now is time to let go. Reading that the mother had been told of kids who had the same terrible illness that their son has who are now riding bikes talking etc. is just giving them false hope. 

Subjecting this child to treatment is not the right thing.

Doctors make life and death decisions every day, they do not play god they act in the best interests of the patient at all times and are bound by strict legal and moral rules. In the case of a child the parents cannot discharge a child if the hospital feel it is not safe to do so, in the case of an adult it is the same and as here courts appoint people to represent them both. 

This has become a media circus with the Pope, a religious nut job from the States and Trump all getting involved and yet all the medical experts who have seen the case in the UK and in the EU court of appeal all agree GOSH (who are the worlds leading paediatric hospital) are correct.

I just hope that this can be concluded and the family can move on, but I fear this will drag on and on and the outcome will still be the same.    

[TAFKARM]

Spot on Jeff. 

[DonPeffers]

On 7/12/2017 at 13:04, jeff oakley said:

It is indeed a very sad case but to say Doctors are playing god is disingenuous to those in the medical profession. This child by any rational judgment is only alive because the machinery and the skill of those involved in his care and without this he would have already been dead.

To compare the two case you have is wrong, the first case was a disagreement of what was the best treatment and it is conceivable that the recovery would have been the same doing what the hospital recommended, he has not been cured by the way, there is still a long way to go there and that child could walk talk breath unaided with full brain function.

Sadly Charlie Gard has none of those functions and from everything I have read it is the right decision to withdrawn the machinery that keeps him alive. The parents are understandably upset and have done what they feel is right but now is time to let go. Reading that the mother had been told of kids who had the same terrible illness that their son has who are now riding bikes talking etc. is just giving them false hope. 

Subjecting this child to treatment is not the right thing.

Doctors make life and death decisions every day, they do not play god they act in the best interests of the patient at all times and are bound by strict legal and moral rules. In the case of a child the parents cannot discharge a child if the hospital feel it is not safe to do so, in the case of an adult it is the same and as here courts appoint people to represent them both. 

This has become a media circus with the Pope, a religious nut job from the States and Trump all getting involved and yet all the medical experts who have seen the case in the UK and in the EU court of appeal all agree GOSH (who are the worlds leading paediatric hospital) are correct.

I just hope that this can be concluded and the family can move on, but I fear this will drag on and on and the outcome will still be the same.    

To answer your first point the parents have raised £1.3 million so could provide the medical support independently for a time.

Your second point--the NHS did not have a proton beam machine in 2014 to accurately target Ashya King's brain tumour and would not then fund treatment abroad so the parents set about it independently. UHS (University Hospital Southampton) said the treatment would not work and Ashya was too ill to travel and both comments were proved wrong. Following a U-turn the NHS obtained 2 proton beam machines in June 2017. The article www.thesun.co.uk/news/3610081 quotes a UHS source as saying    "We co-operated fully with his parents and were in the process of arranging a safe transfer to the Proton Therapy Center in Prague at their request when he was removed from our hospital without warning. "We have, and always will, dispute the King ­family’s version of events."    If this quote is accurate why would the parents travel independently and pay for the £65,000 treatment? 

Clearly not all doctors act in the best interest of patients--see Ian Paterson  http://www.telegraph.co.uk/news/2017/04/28/ian-paterson-charmed-patients-scrimping-treatments-funding-luxury/

http://www.dailymail.co.uk/health/article-3159168/Parent-s-joy-toddler-born-just-2-healthy-brain-tissue-expected-not-survive-makes-miraculous-recovery-scans-showing-organ-fully-functioning.html describes the case of a child born with only 2% healthy brain tissue who doctors suggested should be aborted (parents refused) and warned he would not survive, which has proved incorrect.

http://www.mirror.co.uk/news/uk-news/nhs-sets-aside-56-billion-8481673 £56 billion set aside to settle NHS negligence claims in 2016 so clearly many, major mistakes are made.

https://inews.co.uk/essentials/news/health/proton-therapy-center-prague-prostate-cancer 12 May 2017 article details British men going to Prague for proton therapy.

http://www.mirror.co.uk/news/uk-news/fury-nhs-pays-125million-35million-5388338 describes NHS possibly grossly overpaying for new proton therapy machines.

Please don't get me wrong about the NHS; my late father worked in it for 37 years and I was in a long term relationship with a nurse but I can't help getting the feeling (perhaps wrongly) that the NHS considers itself the best in the world (perhaps wrongly) and patients are meant to know their place as in the Monty Python hospital sketch where the pregnant woman asks what she should do and Cleese says do nothing--you're not qualified (satirical I know).

It would be a grievous error to place the NHS on such a pedestal as to remove it from the closest scrutiny. That mistake has been made in the past with the Clergy and other institutions and the costs and pain are still felt to this day.

I guess if it were my child I would try any treatment rather than none.

 

[jeff oakley]

Doctors are human and there will always be rouge people, Shipman comes to mind and that is why the rules were changed to ensure that never happens again.

Medical negligence claims is an issue but many times pay outs are made and this will continue to rise as people's expectations grow. For example, children who in the past were born before abnormalities were found, now if a scan misses a problem, negligence is claimed as the cost of keeping a child who has disabilities is huge. It is a strange dilemma now as in the past Doctors would have taken risky treatments now they err on the side of caution as they fear medical claims for the slightest thing.

My FIL is 90 and needs his Gaul balder removing, there is only one surgeon who is willing to do this and spent almost an hour explaining the risks are very high of not coming around after the operation and making sure we are aware and agree to this action before he will do it.

Again the incident in Southampton was acted out in the media and facts were distorted, there is no evidence to say the treatment the NHS was going to use was a worse treatment and as said the boy is not yet cancer free. The proton machine was on order having just been approved for use by Nice, the hospital does disagree with the story as told to the press.

Now I admit I probably am biased as I have a daughter who is a Doctor in Coventry hospital and my wife is a FD in the NHS and the demands on the NHS are now out of control. We spent £22million on gender reassignment last year, god knows how much on cosmetic surgery and treating those who come from abroad who contribute nothing, that is not what the NHS should be doing in my opinion.

As for waste, that case as reported is the tip of the iceberg but they have too many who are not business savvy and if every bill you see for changing a socket is £300 and everyone quotes the same, then purchase managers feel that is correct. Waste in any government organisation is shocking and in my wife's role she is trying to cut that but it is difficult when PFI agreements are signed on political nods and there is a culture of empire building that has to be changed and that is from NHS England down.

The NHS has faults but it is one of the best in the world for most medical things. Yes there may be specialist centres worldwide that are better for some things, but ours is up there overall.

Now back to the Charlie Gard case, the Judge has agreed to fly over the American Dr, whose evidence this new case revolves around, so he can examine the child because he says these drugs could give a 10-56% chance of helping but the have never been tested on a human, just mice. He then went on to say if as GOSH have reported his head has not grown that it would mean recovery is unlikely. So the "hope" that has been given to the parents and being whipped up in the media, is from a Dr who has not examined the child, using a drug that has only been used on mice, who is guessing between a 10-56% chance of it being of use but will not give him back the abilities to run, breath unaided, is that a life improvement?

I suspect when he gets here the judge will still be forced to side with GOSH and there will be many who still feel it is wrong. Sometimes doing the right thing seems so wrong.

[DonPeffers]

Good points well made Jeff. It is of course a very emotive subject and we await the next medical advice and Court judgement.

I am just not a fan, in any circumstances, of Death therapy other than in the very funny film 'What about Bob?' starring Bill Murray and Richard Dreyfuss.

[John K]

This is a tough subject to comment on and I nearly started a thread on it a while back but chickened out...

I probably have an atypical view as I have no kids and was bought up by parents with a view that death happens all the time and its not something to worry about.

Personally and it is a very personal opinion, but Charlie should be allowed to die.

His parents are fighting for him (or are they fighting for themselves?), but are probably being encouraged to fight on by well wishers and the frankly shameful snakeoil merchants who pedal false hopes. 

Is it anything to do with me? Am I allowed an opinion..?

I think I am, because if Charlie gets treatment that allows him to survive, even the best prognosis is a life of extensive medical care and therapy. Which has to be paid for. If the parents said they would fund every aspect of his care for the rest of his life, then I am not allowed an opinion. But if society is expected to pay for him for the rest of his life, then I think we are allowed an opinion.

To support Jeff, IMHO the NHS is there to save lives and mop up after accidents - it is not there to guarantee a quality of life to whatever standards people chose for them selves. It is not there to support peoples choices for example fat bands, tattoo removal, gender reassignment or ear lobe reduction 'because I am teased at school'. 

Taking it to an extreme, I would be a bit miffed if I was mown down on the pavement and had to wait 30 mins for an ambulance because the NHS Trust didn't have the money because they were paying a million a year for the care of a person who would never be able to contribute to society and was only alive because of the high courts and an online petition.

Sorry if my opinion offends and I accept it is not PC but it is my opinion...

[DonPeffers]

With many hospital A & E departments closing  (latest I saw was Weston Super Mare closing 10pm to 8am meaning transport to Taunton or Bristol for treatment) I hope nobody needs an A & E dept. very urgently when there are closed.

[jeff oakley]

It is not until people actually use the NHS hospital services they realise how bad it is in some areas. We do not have enough Dr's and that is why WSM has been forced to close at quieter times. My Daughter regularly works 12 hour shifts which then become 14 hours with handovers in A&E. So it is unsurprising why 12 of her cohorts have already left to work abroad where conditions are better. She knew what she was getting into and never moans when she is fixing people but I worry the toll it takes on her.

I have this last two years spent a lot of time in A&E with both my parents and my wifes. It is sad to see how shocked people are when they see how busy the staff are, and when they are treating people in corridors as there are so many waiting it is wrong. One woman was in tears as her aged mum was in agony with a broken hip waiting to get fixed. She told me she believed what Hunt had said about Dr's during the strike and she did not believe it was as bad as Dr's made out. She now felt it was worse than she had thought or believed.

The sad thing it will get worse as more A&E and minor injuries units close.

[Peter (Monty)]

It's not really surprising, the tories have hardly been subtle about their desires to privatise the health service, they're just doing it insidiously by slowly defunding it so people think privatisation is the only way to fix it, when in reality that gets you the immoral mess they have in America. My favourite statistic after the election was that the £1.5b DUP deal could have paid for 1200 doctors for a decade.

I would gladly pay more taxes if I knew it was going to pay for doctors, nurses, firemen, policemen, teachers... I'm not currently in need of surgery, my house isn't on fire, I'm not currently being robbed, I don't have kids, but if any of those circumstances change I'd be glad to have public services we can rely on and be proud of.

[DonPeffers]

On 7/12/2017 at 13:04, jeff oakley said:

 In the case of a child the parents cannot discharge a child if the hospital feel it is not safe to do so, in the case of an adult it is the same and as here courts appoint people to represent them both. 

 

ITV Health Editor Rachel Younger explained on TV the position of GOSH was that if they discharged Charlie Gard to his parents care then in future GOSH could not refuse any other parent making a similar discharge request hence the legal case which continues today at 2pm and may conclude tomorrow.

[Andy_R]

On 14/07/2017 at 10:20, John K said:

Taking it to an extreme, I would be a bit miffed if I was mown down on the pavement and had to wait 30 mins for an ambulance because the NHS Trust didn't have the money because they were paying a million a year for the care of a person who would never be able to contribute to society and was only alive because of the high courts and an online petition.

As I write this I believe the decision has been made that Charlie is to be allowed to die.

Incredibly tragic for everyone involved ... whether the parents, supporters or medical professionals. Personally I think that Charlie's parents were correct to follow the path they did. I have adopted two children with multiple & advanced special needs ... one of whom went through a similar process through the high court (albeit without the media circus ... thank goodness!) so obviously my views are bias. However it's a parents job to fight for their child and at the time they had a skilled & respected medical professional in the US saying that Charlie had a chance ... they should be applauded for the action they took and the balls it's taken to agree to terminate Charlie's life now that professional has said there isn't much hope.

However reading through this post I noticed John K raised an interesting point ...

"Never be able to contribute to society"!

Ignoring the view that a civilised society should look after it's sick and disabled what does that mean ... because a person like Charlie would still have contributed to society?

The medical profession will learn a huge amount from his case and in the future that WILL save other children with similar conditions. These children could go on to work, pay taxes and not be a drain on the NHS/The State ... which is what I assume most people mean when someone doesn't contribute to society.

Also Charlie may have survived and his survival will again have helped increase humanities knowledge of the human body & mind ... which is a contribution to society that most people can only dream of achieving.

Medical advances happen all the time and in 10, 20 or even 30 years time he may have been able to contribute more to society in terms of employment and taxes.

My son, who the doctors said would never survive or sit or walk or eat or talk or find a identity, etc., is now doing all of that and he's only 7. His skill with computers is already out stripping that of a main stream high school child. My job as a Dad is to be optimistic but even his doctors are now saying he might find employment in IT or programming when he grows up .. just 6 years after being told by the same doctors that he would never even be able to communicate with anyone in his entire life.

While my son's case is special it's in no way unique ... the school he attends has many children with a similar back story and future outlook.

Finally where does it stop if we say that because a person doesn't pay taxes and is a drain on resources that they shouldn't be allowed a chance? Should that thought process also apply to the long term unemployed? A car accident victim who is only 18? Anyone with a terminal illness? Someone who tried to commit suicide and didn't make it?

Everyone has their views and like John K said it's a very emotional subject but personally I'm very happy we live in a country that supports those that can't support themselves.

[Geoffrey Carter (Buttercup)]

I watched the parents statement in the pub on my iPad whilst eating my tea.

I sat there with tears streaming down my face as I just kept on looking at the mothers face and I felt gutted for her. Absolutely gutted.

 

[DonPeffers]

With robots to take over many jobs in the not too distant future there will be many who are non contributors to the tax system and should they be culled?

Has the Gard case been a P. R . disaster for GOSH and were they wise to criticise Dr Hirano of Columbia University Medical Center where he is a highly respected professor of neurology who has successfully treated similar (different gene involved) cases?

http://iwradio.co.uk/2017/07/25/charlie-gard-case-us-father-says-professor-michio-hiranos-experimental-treatment-saved-my-son/ makes for interesting reading.

Is there an inconsistency in the Guardian article 25 July 2017 https://www.theguardian.com/uk-news/2017/jul/24/how-new-brain-scans-showed-charlie-gard-could-not-be-helped which reads

'Charlie Gard’s parents were told that their son had irreversible brain damage after he suffered seizures before Christmas, but they did not believe it. They maintained that an MRI scan in January showed the brain was normal. That has been the crux of the difference between parents and the hospital. Connie Yates and Chris Gard, bolstered by the opinions of doctors in other countries who had not seen their child, believed treatment was possible.

Their hopes came to an end at the weekend, after Michio Hirano, the US neurologist who had offered an experimental drug therapy, finally accepted an invitation that had been open since Christmas to come to London and see Charlie. He was expected to explain in court the new evidence that he said suggested nucleoside bypass therapy (NBT) could help Charlie'

What I finding baffling is if Charlie had suffered irreversible brain damage before Christmas (when he had already been at GOSH for over 2 months) why then would GOSH later extend an invitation to a US doctor?

By accident or design the Guardian article omits any title, either Doctor or Professor, when mentioning Michio Hirano and one wonders if a discredit operation is underway and if history is being rewritten as reports from the parents suggest they contacted Prof. Hirano after conducting their own research.