And we're also making the assumption that the baby's brain is so damaged that medical treatment cannot help him. Especially with a young child I am not sure how certain we can be of this.
This is not an assumption. This is based upon the evidence provided.
Charlie suffers from the RRM2B mutation of MDDS. No one in the world has ever treated this form of MDDS with nucleoside therapy, although patients with a different strain, TK2, have received nucleoside therapy, with some recorded benefit. In mouse models the benefit to TK2 patients was put at 4% of life expectancy. There is no evidence that nucleoside therapy can cross the blood/brain barrier, which it must do to treat RRM2B, although the US doctor expressed the hope that it might do so. There is unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage. I dare say that medical science may benefit, objectively, from the experiment, but experimentation cannot be in Charlie's best interests unless there is a prospect of benefit for him.
if Charlie's damaged brain function cannot be improved, as all agree, then how can he be any better off than he is now, which is a condition that his parents believe should not be sustained?
What next? Grandma has cancer... The funds can be used to help a 30 year old more productive citizen. Hence, Grandma dies.
Medical practitioners go through this debate daily....with a great deal more nuance of course.
First: In emergent situations there's triage; deciding on where urgent care should go, and occasionally being forced to give up on a patient in order to be able save another...
In other circumstances it comes down to deciding which therapies or remedies to pursue both for a class of people and for individuals...
End of life decisions are always the hardest... And the notion that we must every effort to eke out another few weeks for Grandma, or who ever, is an expensive luxury...
Any debate about health care policy isn’t complete without adequately addressing its third rail—end-of-life care—and the financial stress it puts on the Medicare budget. Total federal spending on health care eats up nearly 18 percent of the nation’s output, about double what most industrialized nations spend on health care. In 2011, Medicare spending reached close to $554 billion, which amounted to 21 percent of the total spent on U.S. health care in that year. Of that $554 billion, Medicare spent 28 percent, or about $170 billion, on patients’ last six months of life (Pasternak, 6/3)
I don't know about grandma and her cancer.... but the case Bbauska has high lighted strikes me as
one where the parents have refused to accept the reality of the babies condition, and have appealed to strangers on the internet to pursue a course of action which will accomplish nothing but providing profit to a doctor and hospital and perhaps a little knowledge as their baby becomes a test subject for a medical experiment.
Ricky, on utilitarian grounds and for the good of society, why don't you empty out your bank account and send it to Somali children.
I suppose I could be more charitable. Perhaps we all could.
You could also try considering the question with less vitriol.There's more to this than the emotional pain of the parents to consider...
Who are you to say what is moral or ethical for everyone. Ethics are based upon one's own standards. I would not begin to say that my ethics are right for you. That is overbearing and rude. You cannot say that a person cannot spend their own money to try to save their child's life because it can be spent to a better purpose elsewhere. That is an intrusion that is wrong, over-reaching, and honestly, a bit scary
In the case of medical costs, the money being spent isn't usually only from the parents pockets...
In most cases in the US, the insurance company would be resistant to underwriting the expense of a no hope experiment like this one. Ethically, they can't bankrupt their insurance pool in order to fund this kind of procedure.
In most other western nations the insurance pool is effectively the national health budget, and the responsibility for gauging which expenditures to pursue falls on insurance administrators as well.
Only the very wealthy are free of these constraints.
In the case of these parents, the Internet has provided them the freedom to indulge their wishes.
In most cases where there are limited resources ... there exists an ethical protocol independent of the issue of who's willing or able to pay the most.
Per your example
Bob is a CEO. He needs a new kidney. So does Jim, a homeless man. A perfect matched kidney comes available for one of the two people. It is a better use to help the CEO from your standards. It is better for the economy
Here's your answer...
Under the National Organ Transplant Act, organ transplantation in the United States is overseen by the U.S. Department of Health and Human Services (DHHS). Specifically, the Division of Transplantation (DoT), which is part of the Health Resources and Services Administration (HRSA), is in charge of a federal contract that established and maintains the national waiting list and distributes cadaveric organs fairly. This organization is called the OPTN (Organ Procurement and Transplantation Network) and the contract is currently held by the United Network for Organ Sharing (UNOS).
Organs are allocated (given) according to strict rules that take into account physical matching, tissue and blood type matching, medical criteria, waiting time, severity of illness, etc. The allocation system is blind to name, race, sex, and wealth
. The allocation rules have been developed over many years of deliberation by physicians and other transplant professionals, transplant candidates and recipients, donor families, and representatives of the federal government. To review the policies refer to the Policy Management section on the UNOS website at http://www.unos.org
The UK court has made a decision that considers the babies interests..
The answer is that, although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child's best interests. The Great Ormond Street Hospital has made an application and it is my duty to rule on it, given that the parents and the hospital cannot agree on the best way forward.
In any other circumstance, besides for profit medicine, the limitations of available medical resources, or insurance funds, would also enter into the equation. And I can't see how that factor would have done anything but reinforce the decision of the court.