DieselDaisy Posted July 31, 2017 Share Posted July 31, 2017 I see no reason to disbelieve the parents when backed by a leading practitioner on mitochondria that their son would not suffer duress - no - besides, the elephant in the room here is he is going to die anyhow (in the absence of this treatment). You yourself said you have not been following this case. I have. 8 minutes ago, SoulMonster said: You see no reason to not believe the parents over all experts? Okay. Is this because you have a general distrust of experts, because your are easily swayed by dispalys of emotion, or because you are so entrenched in your positon that you can't back down? Coming from somebody who wants to sterilise the human population, and is himself entrenched on (and obsessed with) attacking religion? Quote Link to comment Share on other sites More sharing options...
SoulMonster Posted July 31, 2017 Share Posted July 31, 2017 12 minutes ago, DieselDaisy said: I see no reason to disbelieve the parents when backed by a leading practitioner on mitochondria that their son would not suffer duress - no - besides, the elephant in the room here is he is going to die anyhow (in the absence of this treatment). You yourself said you have not been following this case. I have. Coming from somebody who wants to sterilise the human population, and is himself entrenched on (and obsessed with) attacking religion? Dr. Hirano was just one out of many experts who looked at the boy -- no, wait, Dr. Hirano never actually did look at the boy, he diagnosed froom afar -- and everyone except those with financial interests in the matter (that would be Dr. Hirano) agreed that it was futile to let him undergo alternative treatment. In addition, even greater experts on metabolic diseases affecting mitochondrial functions than Dr. Hirano were consulted. Again, read the link I sent you. I have not been following the case, right, but I have read plenty about it now. Which should be obvious from my posts. I have never said I want to sterilize the human population. What I said, some years ago, was that IF the world's population continues to grow and there is no other alternative, than we have to consider population control. That "if" is essential. This is vastly different from what you claim I have said. I wish you would stop lying about me. It makes me have to spend time pointing out your lies and it makes you come across as dishonest. Yes, I am strongly against religion. But just like your claim about me wanting to sterilize the human population, my opinions in religion is irrelevant to what we discuss. I was simply asking why you are so eager to trust the parents in face of the overwhelming expert opinion. If you don't want to answer this, then simply leave it be, no need to resort to lies or irrelevancies. Quote Link to comment Share on other sites More sharing options...
DieselDaisy Posted July 31, 2017 Share Posted July 31, 2017 1 minute ago, SoulMonster said: Dr. Hirano was just one out of many experts who looked at the boy -- no, wait, Dr. Hirano never actually did look at the boy, he diagnosed froom afar -- and everyone except those with financial interests in the matter (that would be Dr. Hirano) agreed that it was futile to let him undergo alternative treatment. In addition, even greater experts on metabolic diseases affecting mitochondrial functions than Dr. Hirano were consulted. Again, read the link I sent you. I have not been following the case, right, but I have read plenty about it now. Which should be obvious from my posts. I have never said I want to sterilize the human population. What I said, some years ago, was that IF the world's population continues to grow and there is no other alternative, than we have to consider population control. That "if" is essential. This is vastly different from what you claim I have said. I wish you would stop lying about me. It makes me have to spend time pointing out your lies and it makes you come across as dishonest. Yes, I am strongly against religion. But just like your claim about me wanting to sterilize the human population, my opinions in religion is irrelevant to what we discuss. I was simply asking why you are so eager to trust the parents in face of the overwhelming expert opinion. If you don't want to answer this, then simply leave it be, no need to resort to lies or irrelevancies. Just to clarify, I do not necessarily think this treatment would work, but I believe the parents should have had the right to pursue that treatment. This discussion seems to be bogged down in academia concerning the treatment. Dr Hirano admitted to treating successfully somebody with a similar condition which predisposes that there was always an element of doubt pertaining to Charlie Gard's specific case. There are two interlocking issues here: the feasibility of the treatment and parental right. It is the latter that most concerns me. If the parents thought there was more than a wild chance it would work, more the better. Quote Link to comment Share on other sites More sharing options...
SoulMonster Posted July 31, 2017 Share Posted July 31, 2017 13 minutes ago, DieselDaisy said: Just to clarify, I do not necessarily think this treatment would work, but I believe the parents should have had the right to pursue that treatment. This discussion seems to be bogged down in academia concerning the treatment. Dr Hirano admitted to treating successfully somebody with a similar condition which predisposes that there was always an element of doubt pertaining to Charlie Gard's specific case. There are two interlocking issues here: the feasibility of the treatment and parental right. It is the latter that most concerns me. If the parents thought there was more than a wild chance it would work, more the better. I have already commented on this, but I can repeat myself: Parents do NOT have the moral or legal right to subject their children to everything, which includes alternative treatments which experts agree will have no effect and which have a significant probability of causing the child further suffering. The important thing is the right children have to be protected from harm, and "parental right" must yield to this right. As a father myself, I find this very easy to understand. 1 Quote Link to comment Share on other sites More sharing options...
DieselDaisy Posted July 31, 2017 Share Posted July 31, 2017 36 minutes ago, SoulMonster said: I have already commented on this, but I can repeat myself: Parents do NOT have the moral or legal right to subject their children to everything, which includes alternative treatments which experts agree will have no effect and which have a significant probability of causing the child further suffering. The important thing is the right children have to be protected from harm, and "parental right" must yield to this right. As a father myself, I find this very easy to understand. This was not an 'alternative treatment'. That term suggests Chinese medicine or quackery. You are aware that your ''children have to be protected from harm'' could be interpreted as an endorsement of this treatment? Charlie Gard already had a death sentence. The sanctity of life and filial bond entails a parental responsibility to attempt anything and everything to provide a standard of living for that child (and before you start shredding that term up, I define 'standard of living' as prolongation of lifespan whence allied with cognitive function). The parents were denied the right to pursue this course. 1 Quote Link to comment Share on other sites More sharing options...
SoulMonster Posted July 31, 2017 Share Posted July 31, 2017 2 minutes ago, DieselDaisy said: This was not an 'alternative treatment'. That term suggests Chinese medicine or quackery. You are aware that your ''children have to be protected from harm'' could be interpreted as an endorsement of this treatment? Charlie Gard already had a death sentence. The sanctity of life and filial bond entails a parental responsibility to attempt anything and everything to provide a standard of living for that child (and before you start shredding that term up, I define 'standard of living' as prolongation of lifespan whence allied with cognitive function). The parents were denied the right to pursue this course. The parents were denied the right to pursue this course....because expert opinion declared it was futile with grave danger of causing the child further suffering. Again, parental rights end where child rights begin. I understand that you think that the parents in this case should have been allowed to go against expert opinion with the possible elongated and elevated pain of a baby as a result when there was almost zero chance of any treatment nor cure, but I for one am happy they weren't and I am happy that I live in a society where the rights of children come before the rights of parents. Quote Link to comment Share on other sites More sharing options...
DieselDaisy Posted July 31, 2017 Share Posted July 31, 2017 24 minutes ago, SoulMonster said: The parents were denied the right to pursue this course....because expert opinion declared it was futile with grave danger of causing the child further suffering. Again, parental rights end where child rights begin. I understand that you think that the parents in this case should have been allowed to go against expert opinion with the possible elongated and elevated pain of a baby as a result when there was almost zero chance of any treatment nor cure, but I for one am happy they weren't and I am happy that I live in a society where the rights of children come before the rights of parents. You're discussing expert opinion yet you are not including one expert opinion, Dr Hirano MD, specialising in neuromuscular genetics, co-Director of the CUMC Muscular Dystrophy Association clinic, and Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases. How convenient for your argument to omit him yet include Great Ormond Street. I hate to break it to you but the NHS is kind of naff, waiting times of approx. six hours, people languishing in filthy hospitals. Try and get an antibiotic from the NHS these days. Good luck. I'd rather live in a society which pursues every possible avenue for standard of living, and takes into serious consideration parental wishes, and not a coercive ruthless uncaring state handing out summary judgements. 3 Quote Link to comment Share on other sites More sharing options...
SoulMonster Posted July 31, 2017 Share Posted July 31, 2017 16 minutes ago, DieselDaisy said: You're discussing expert opinion yet you are not including one expert opinion, Dr Hirano MD, specialising in neuromuscular genetics, co-Director of the CUMC Muscular Dystrophy Association clinic, and Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases. How convenient for your argument to omit him yet include Great Ormond Street. I hate to break it to you but the NHS is kind of naff, waiting times of approx. six hours, people languishing in filthy hospitals. Try and get an antibiotic from the NHS these days. Good luck. I'd rather live in a society which pursues every possible avenue for standard of living, and takes into serious consideration parental wishes, and not a coercive ruthless uncaring state handing out summary judgements. I have said this before: Many experts, not from GOSM, evaluated the propects of the child and agreed that any treatment was futile and could cause harm. The ONLY expert who said there was still a significant hope -- and incidentally the only expert who would gain financially from this, and the only expert who didn't actually phsyically examine the child -- was Dr. Hirano. Additionally, and I have also said this before, Dr. Hirano wasn't the greatest expert on mitochondrial metabolic diseases that evaluated the child. So I haven't "conveniently omitted" Dr. Hirano, like you claim, I have pointed all of this out before. It is you who don't read what I write, don't understand it, or just fail to acknowledge it. In my opinion they took the parental wishes seriously into consideration. Otherwise they wouldn't at first have agreed to apply to the ethical commitee to have the child transferred to the US for alternative treatment, nor would they have held him on life support/ventilation so long as they did. Only when it became absolutely obvious to every expert who examined the child that there were no hope, did they decide to move him to pallitative care, against the parents wishes. But again, the rights of the child trumphs the rights of the parents. When you describe this as "a coercive, ruthless uncaring state handling out summary judgments" I find it tabloid and caricaturing and hopelessly distant from reality. It is like discussing with a The Sun headline or someone who gets their news from their Facebook stream. It seems you have cherry-picked information from this case to support an already exisiting opinion or mentality. Quote Link to comment Share on other sites More sharing options...
DieselDaisy Posted July 31, 2017 Share Posted July 31, 2017 13 minutes ago, SoulMonster said: I have said this before: Many experts, not from GOSM, evaluated the propects of the child and agreed that any treatment was futile and could cause harm. The ONLY expert who said there was still a significant hope -- and incidentally the only expert who would gain financially from this, and the only expert who didn't actually phsyically examine the child -- was Dr. Hirano. Additionally, and I have also said this before, Dr. Hirano wasn't the greatest expert on mitochondrial metabolic diseases that evaluated the child. So I haven't "conveniently omitted" Dr. Hirano, like you claim, I have pointed all of this out before. It is you who don't read what I write, don't understand it, or just fail to acknowledge it. In my opinion they took the parental wishes seriously into consideration. Otherwise they wouldn't at first have agreed to apply to the ethical commitee to have the child transferred to the US for alternative treatment, nor would they have held him on life support/ventilation so long as they did. Only when it became absolutely obvious to every expert who examined the child that there were no hope, did they decide to move him to pallitative care, against the parents wishes. But again, the rights of the child trumphs the rights of the parents. When you describe this as "a coercive, ruthless uncaring state handling out summary judgments" I find it tabloid and caricaturing and hopelessly distant from reality. It is like discussing with a The Sun headline or someone who gets their news from their Facebook stream. It seems you have cherry-picked information from this case to support an already exisiting opinion or mentality. They took parental wishes so far on board that the parents had to go to court to obtain permission as to the whereabouts of his death! The ultimate indignity inflicted by the uncaring state. 2 Quote Link to comment Share on other sites More sharing options...
SoulMonster Posted July 31, 2017 Share Posted July 31, 2017 7 minutes ago, DieselDaisy said: They took parental wishes so far on board that the parents had to go to court to obtain permission as to the whereabouts of his death! The ultimate indignity inflicted by the uncaring state. The parents wanted him to die at home, the hospital argued that they couldn't then provide the necesarry palliative care, simply because the equipment wouldn't fit in the door. I don't think this is very controversial nor unreasonable. But I guess you are of the opinion that the parents desire to have their child die at home is more important than to make sure that his death is as pain-free as possible? Overall, it seems to me you think children are parents' possesion to do as they want with. Have you read too much Roman history again now? To me, the rights of parents must yield to the rights of children, simply because not all parents, or all the time, especially in times of duress, are fit to choose what is best for their children. Quote Link to comment Share on other sites More sharing options...
AxlsFavoriteRose Posted July 31, 2017 Share Posted July 31, 2017 (edited) that baby knew his parents and knew they loved him. to be taken away in the time he needed them most is just horrid IMO. horrid! and why need an ICU dr? i have been in ICU, on the edge of dying and whenever a dr, would "visit" it would just be to pop in for a second. my nurse Ensel knew more about me than any ICU dr! Edited July 31, 2017 by AxlsFavoriteRose Quote Link to comment Share on other sites More sharing options...
SoulMonster Posted July 31, 2017 Share Posted July 31, 2017 3 minutes ago, AxlsFavoriteRose said: that baby knew his parents and knew they loved him. to be taken away in the time he needed them most is just horrid IMO. horrid! Did they take him away from his parents when he was dying? I assumed he died in their arms, at the hospital, which is common practise. Why wouldn't they allowed the parents to be there? Quote Link to comment Share on other sites More sharing options...
AxlsFavoriteRose Posted July 31, 2017 Share Posted July 31, 2017 (edited) 4 minutes ago, SoulMonster said: Did they take him away from his parents when he was dying? I assumed he died in their arms, at the hospital, which is common practise. Why wouldn't they allowed the parents to be there? This time, Charlie's parents argued for the right to bring Charlie home from the hospital to die rather than the hospital or hospice. THAT is the time they were robbed of. Mom,Dad and their baby. Edited July 31, 2017 by AxlsFavoriteRose Quote Link to comment Share on other sites More sharing options...
SoulMonster Posted July 31, 2017 Share Posted July 31, 2017 3 minutes ago, AxlsFavoriteRose said: This time, Charlie's parents argued for the right to bring Charlie home from the hospital to die rather than the hospital or hospice. THAT is the time they were robbed of. Mom,Dad and their baby. Okay, I thought you meant he was taken away from his parents. The hospital argued that they couldn't provide the required care at the parents' home, the parents didn't want him to die at the hospital, so the hospital compromised with a hospice. Again, seem to me like the hospital were willing to take the parents desires into account as long as it didn't compromise the rights of the child. Far from the reality depicted by Diesel. I seriously doubt a child with such debilitating brain injuries would be aware of whether he was in a hospice, hospital or at a home he barely knew, when he died, especially since they probably gave him plenty of opiates to remove any pain he must have felt as his life ebbed out. His parents presumably held him in his arms till the last, but I doubt he even noticed that. Quote Link to comment Share on other sites More sharing options...
AxlsFavoriteRose Posted July 31, 2017 Share Posted July 31, 2017 39 minutes ago, SoulMonster said: Okay, I thought you meant he was taken away from his parents. The hospital argued that they couldn't provide the required care at the parents' home, the parents didn't want him to die at the hospital, so the hospital compromised with a hospice. Again, seem to me like the hospital were willing to take the parents desires into account as long as it didn't compromise the rights of the child. Far from the reality depicted by Diesel. I seriously doubt a child with such debilitating brain injuries would be aware of whether he was in a hospice, hospital or at a home he barely knew, when he died, especially since they probably gave him plenty of opiates to remove any pain he must have felt as his life ebbed out. His parents presumably held him in his arms till the last, but I doubt he even noticed that. you are using a lot of probably and doubt and presumes. i read it was because no ICU dr would agree to be there. and as i also said i have seen ICU nurses that can handle tings much better than a dr. but i am done. you and others see it one way, myself and others see it another and i am sure many see it not either way. the important thing i feel is pain for the parents, i wish Charlie eternal peace and i pray for both of these things. Quote Link to comment Share on other sites More sharing options...
DieselDaisy Posted July 31, 2017 Share Posted July 31, 2017 The thing about the door not being wide enough was tabloid tittle-tattle by the way. Quote Link to comment Share on other sites More sharing options...
SoulMonster Posted July 31, 2017 Share Posted July 31, 2017 Just now, AxlsFavoriteRose said: you are using a lot of probably and doubt and presumes. Well, I don't know how it actually went down, not having been there or read any reports, so I prefer to not phrase myself as if I do. That being said, I do know a bit about palliative care, also in regards to end-of-care treatment and administration of drugs, and feel my assumptions are reasonable and can be backed up if required. On the other hand, if someone believes the boy's specific brain injuries allowed a mental state sufficient to recognize his surroundings or even him being held as he dies, or that he wasn't put on heavy sedatives as they removed life support, then please go ahead and argue this position. Quote Link to comment Share on other sites More sharing options...
SoulMonster Posted July 31, 2017 Share Posted July 31, 2017 11 minutes ago, DieselDaisy said: The thing about the door not being wide enough was tabloid tittle-tattle by the way. It was one out of many reasons given by the hospital as to why the boy couldn't die at home. It is found on the hospital's website under "Lastest Press Releases": http://www.gosh.nhs.uk/file/23746/download?token=gyhPIaba Here's is the exact wording: "GOSH is aware that there are other practical problems one being that the ventilator does not fit through the front door. There are then stairs to negotiate and corners to turn. The physical lay-out of the route between the ambulance on the pavement and their home would require Charlie to be taken off the ventilator and provided with only “hand-bagging” until he was inside". 1 Quote Link to comment Share on other sites More sharing options...
alfierose Posted July 31, 2017 Share Posted July 31, 2017 57 minutes ago, SoulMonster said: It was one out of many reasons given by the hospital as to why the boy couldn't die at home. It is found on the hospital's website under "Lastest Press Releases": http://www.gosh.nhs.uk/file/23746/download?token=gyhPIaba Here's is the exact wording: "GOSH is aware that there are other practical problems one being that the ventilator does not fit through the front door. There are then stairs to negotiate and corners to turn. The physical lay-out of the route between the ambulance on the pavement and their home would require Charlie to be taken off the ventilator and provided with only “hand-bagging” until he was inside". My understanding is that they were trying to avoid him dying whilst being moved from one place to another, the procedure to go from hospital to the parent's flat would have been a big risk, it would have been awful for Charlie, his parent's and attending medics if he died in a stairwell during the process. Undertaken at a hospice or in hospital (in this particular case) his death could be what is called 'well managed' with the right amount of morphine/sedatives etc.. As he couldn't breathe unaided he will have died within minutes of being removed from ventilation and unless this is carefully medically managed it can be an unpleasant way to die. There had already been previous incidents of the ventilator becoming dislodged so this was a known risk. GOSH have come under so much criticism for not allowing his parents to take him home but I believe their intentions were only to minimise the risk of a traumatic end to life for Charlie and of course his loved ones. 4 Quote Link to comment Share on other sites More sharing options...
Popular Post Axls Rocket Queen Posted July 31, 2017 Popular Post Share Posted July 31, 2017 3 hours ago, SoulMonster said: Okay, I thought you meant he was taken away from his parents. The hospital argued that they couldn't provide the required care at the parents' home, the parents didn't want him to die at the hospital, so the hospital compromised with a hospice. Again, seem to me like the hospital were willing to take the parents desires into account as long as it didn't compromise the rights of the child. Far from the reality depicted by Diesel. I seriously doubt a child with such debilitating brain injuries would be aware of whether he was in a hospice, hospital or at a home he barely knew, when he died, especially since they probably gave him plenty of opiates to remove any pain he must have felt as his life ebbed out. His parents presumably held him in his arms till the last, but I doubt he even noticed that. This. He will have been on heavy doses of opiates to prevent a painful death. Remember he was being kept alive only by mechanical ventilation, meaning without it he died by suffocation. Better that in a controlled environment where they could medicate as necessary to ease his passing, than suddenly and painfully en route to a home he didn't know. Getting him home would have purely been for the parents' benefit, not Charlie's. Having seen many pet owners push their pets too far to help themselves cope with losing them, I completely understand and support GOSH's decision. It's about quality, not just quantity, of life...and when emotions are too involved and clouding judgement, the medical professional has to advocate for the child/pet despite what the parent/owner feels they want, as they cannot speak for themselves. 5 Quote Link to comment Share on other sites More sharing options...
AxlsFavoriteRose Posted August 1, 2017 Share Posted August 1, 2017 (edited) On 7/31/2017 at 2:48 PM, Axls Rocket Queen said: This. He will have been on heavy doses of opiates to prevent a painful death. Remember he was being kept alive only by mechanical ventilation, meaning without it he died by suffocation. Better that in a controlled environment where they could medicate as necessary to ease his passing, than suddenly and painfully en route to a home he didn't know. Getting him home would have purely been for the parents' benefit, not Charlie's. Having seen many pet owners push their pets too far to help themselves cope with losing them, I completely understand and support GOSH's decision. It's about quality, not just quantity, of life...and when emotions are too involved and clouding judgement, the medical professional has to advocate for the child/pet despite what the parent/owner feels they want, as they cannot speak for themselves. i am not going into it but i had a family member with a similar situation. they didn't have to go to court because their child passed at home. as for pets, my 15 year old lab was diagnosed with cancer at age. this took me by surprise as i had not been expecting it ( had taken my cat in for her shots and at the same time i asked the vet to check my love of my life dog out. ) anyway he found tumors all inside her belly. he was like well we can put her down now. i said i didn't want that but would she be in a lot of pain if i didn't do it right then and there. he said no, she still had a few weeks. he gave her pain meds, i took her home and for the first time in months she got up on the couch. it broke my heart but i was happy at the same time. the next few days she was treated like a Queen. i made her spaghetti, her absolute favorite thing in the world, i loved on her, petting, hugging, kissing her now white muzzle. oh and i had her taken to another vet for a second opinion but he concurred i had a few weeks with her left ) when it became obvious it was her time i took her there and i feel bad to this day because she'd always liked the vet and now she didn't even know this was her last time going. i was taught by a very wise man that we only have one death and we should we allowed to deal with it as well as we can, so instead of crying and hugging her and making a scene the whole time i just petted her and told her i loved her very much. a vet tech overhead me and says "she knows". i pray to God she did. after it was over i got as far as the front desk and i just began crying hard. i choked out "may i have a tissue?" then i ran to my car, got in and sobbed for what seemed hours. anyway, like i said people will have THEIR OWN opinions. you may agree or disagree but i would not hold my breath waiting for them to come around to your opinion. js *shrugs* Edited August 1, 2017 by AxlsFavoriteRose 1 Quote Link to comment Share on other sites More sharing options...
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