Parent's Drop Attempts to Bring Charlie Gard to U.... - Page 3

Natasha218 · ‎07-23-2017

@Isobel Archer wrote:
I don't know if the treatment would have helped him - and apparently no doctor in the UK was either able or willing to try the experimental treatment available here in the US.

What worries me is that it is bad enough when the payer - insurance or government - denies treatment due to cost, - or even their belief that it won't work, but when they won't even let you pay for that treatment I think we have gone too far into a police state.

As one article noted, even if this experimental treatment only marginally improved his condition and even if he died anyway, what might have been learned from it could have helped improve the treatment to the point where it could save others.

I am very concerned about insisting people just die when we don't approve of their "quality of life."

It's called rule by law. GB is a country of laws just like the US. Perhaps this case will result in some changes in their healthcare laws but only in terms of taking a patient out of the country for alternative or experimental treatment. The experimental treatment which really is not a treatment at all, it's research muddied the waters and gave the impression that the baby could be helped in some way. That doctor tried his approach as part of his research on 12 patients and 11 failed the treatment. 1 single patient had some small improvement but only in that the patient could breathe off the respirator. He was still brain damaged with severe cognitive impairment. Even here in this country; no court will have allowed it. No insurer would have covered the charges. No hospital would have let the doctor use his treatment in their facility.

Oznell · ‎11-08-2014

I believe the over-riding principle in the case remains-- does the state wield ultimate power over the minor child, or is the child the main responsibilty of the family? Strip away the emotions and I believe it comes down to a matter of judicial philosophy.

Luckily, (speaking for myself, of course), the courts in America have tended to follow the principle that the family has ultimate sway. Britain has taken a different course, but it is hopeful that the new legal precedent in Britain of at least permitting the parents to consult with other medical opinions-- at no expense to the state, no less-- will influence cases of the future.

Isobel Archer · ‎04-04-2015

@Natasha218 wrote:
@Isobel Archer wrote:
I don't know if the treatment would have helped him - and apparently no doctor in the UK was either able or willing to try the experimental treatment available here in the US.

What worries me is that it is bad enough when the payer - insurance or government - denies treatment due to cost, - or even their belief that it won't work, but when they won't even let you pay for that treatment I think we have gone too far into a police state.

As one article noted, even if this experimental treatment only marginally improved his condition and even if he died anyway, what might have been learned from it could have helped improve the treatment to the point where it could save others.

I am very concerned about insisting people just die when we don't approve of their "quality of life."

It's called rule by law. GB is a country of laws just like the US. Perhaps this case will result in some changes in their healthcare laws but only in terms of taking a patient out of the country for alternative or experimental treatment. The experimental treatment which really is not a treatment at all, it's research muddied the waters and gave the impression that the baby could be helped in some way. That doctor tried his approach as part of his research on 12 patients and 11 failed the treatment. 1 single patient had some small improvement but only in that the patient could breathe off the respirator. He was still brain damaged with severe cognitive impairment. Even here in this country; no court will have allowed it. No insurer would have covered the charges. No hospital would have let the doctor use his treatment in their facility.

Well googling "experimental treatment for Charlie Gard" I find first Arthur Estopinan who says his son benefited from this experimental treatment - after being told by doctors there was no treatment and that he would die.

And then I find FAQs concerning Charlie Gard, that a hospital in the US had agreed to allow the treatment.

This is just off the top, so I'm not understanding your definite statement to the contrary.

SahmIam · ‎04-16-2010

People need to understand that in the UK, the doctors and courts have the LEGAL right and responsibility to make the decisions for a patient when it comes to right to life issues as well as long-term care and using new (not established treatments) and NOT the family even if the family wishes to pay for it out of their own pocket.

This is a HUGE reason why we have not returned to the UK regarding our son: we are not 100% positive he would receive the type of care he receives now. It is also why my in-laws are staying in the US as they are in their 80's; they don't want to be told they can't have specific care or have their right to live (if it comes to that) be removed from their family members. Funny thing: in their younger years, they had NO problem with that policy. Now that they are the ones it may happen to.......

It stinks all around.

goldensrbest · ‎03-10-2010

I feel that sometimes we want care for our love ones ,and ourselves that will only prolong what the result for us or them will be,no cure , with my husband he wanted chemo,i did not want him to have it ,because the chances were slim it would cure him,i knew it would make the weeks he had left ,just so bad,and he was just so very sick.

When you lose some one you L~O~V~E, that Memory of them, becomes a TREASURE.

WenGirl42 · ‎07-05-2012

@Natasha218 wrote:
@millieshops wrote:
I would not want to be Charlie's doctors nor the judges and most of all not his parents.

I do have other thoughts, but right now those are paramount.

Doctors??? It's not the doctors' fault that the parents couldn't leave the country with their child or seek experimental treatments. I'm sure they would like nothing more than to let the parents do what they think is right. They are caring for that child heroically, doing everyhting that they can legally and medically do but they cannot perform miracles. That's the problem here, the blame game. The hospital, the doctors, the courts...everyone is following the law and doing what they believe is in the best interests of the patient. So, there's no need to feel sorry for the doctors or even the judges.

The doctors are, in point of fact, not doing everything that they can legally. They are the ones who decided it was in Charlie's best interest to be taken off life support, which led to the court decision and appeal(s). Their medical opinion about what is best for Charlie, not "all they can legally and medically do" for him, is at the base of this entire situation.

Plaid Pants2 · ‎03-14-2015

@goldensrbest wrote:
I feel that sometimes we want care for our love ones ,and ourselves that will only prolong what the result for us or them will be,no cure , with my husband he wanted chemo,i did not want him to have it ,because the chances were slim it would cure him,i knew it would make the weeks he had left ,just so bad,and he was just so very sick.

@goldensrbest

I compleatly agree with you.

Also, denial and desperation can both be very powerful.

AngusandBuddhasMom · ‎03-10-2010

@Plaid Pants2 wrote:
@goldensrbest wrote:
I feel that sometimes we want care for our love ones ,and ourselves that will only prolong what the result for us or them will be,no cure , with my husband he wanted chemo,i did not want him to have it ,because the chances were slim it would cure him,i knew it would make the weeks he had left ,just so bad,and he was just so very sick.

@goldensrbest

I compleatly agree with you.

Also, denial and desperation can both be very powerful.

I do as well. When my Dad was dying from lung cancer my BIL who at the time was one of his Doctors( as a consultation for his medical group) He told my mom that he was not going to get better considering his history, health etc. That is a hard thing to say and tell your loved ones but it was the truth. His radiation treatments were wiping out my parents savings. This was back in 1998 and my Dad was already 76. So we brought him home and he passed the next morning. We could've maybe prolonged his life and pain for another 3 months. What kind of life is that?

Oznell · ‎11-08-2014

The issues of parental autonomy raised by this case have attained a high profile now. I hope that thoughtful Britons will begin a re-evaluation of the powers they have handed over to the bureaucratic state, and perhaps restore some of the primacy of the family in making decisions about minor children.

Stray · ‎04-20-2013

@Oznell wrote:
I believe the over-riding principle in the case remains-- does the state wield ultimate power over the minor child, or is the child the main responsibilty of the family? Strip away the emotions and I believe it comes down to a matter of judicial philosophy.

Luckily, (speaking for myself, of course), the courts in America have tended to follow the principle that the family has ultimate sway. Britain has taken a different course, but it is hopeful that the new legal precedent in Britain of at least permitting the parents to consult with other medical opinions-- at no expense to the state, no less-- will influence cases of the future.

@Oznell- I agree with your opinions, very balanced and thoughtful....I think the big difference between the US and U.K...is that the government is the insurer. Here, a private insurer would not have approved the drug or treatment so it's not so different. But, it is the moral decision that is troubling. Where, I had trouble was not allowing the family the choice of a second opinion or "allowing" them to leave the Country. Whether the parents were right or wrong, there is no answer. They felt their son was responsive but opening of the eyes is reflex....were they looking for signs that weren't there?... was the baby in pain? We will never know. Could an earlier consult improve his condition? I have a professional point of view as I worked in both medical/legal professions but, here in the US. But, there are matters of the heart to be considered and love of a child by its parents....I have never been asked to make a difficult decision to end a life. I believe end of life decisions lie with the individual or with loved ones, in this case the parents. As a nurse and an attorney, I would have a moral dilemma and could not make that decision. I have been involved in legal battles to preserve life which is so much easier.