Charlie Gard and the Age of “Do Harm” MedicineOriginal Article
Why wouldn’t you call what is happening to Charlie Gard a medical kidnapping considering the hospital won’t let his parents transfer or take him home to die?
I think that the language is too provocative. This is a very sensitive thing. I use strong language, but I don’t want to use overly provocative language. Kidnapping is a crime; this is not a crime. In fact, it’s more disturbing because it appears to be done under the rule of law.
I call [what happened to Charlie] a “bioethical aggression,” By which I mean that the value beliefs of mainstream Bioethics and the medical intelligentsia are being imposed on people who have a more traditional sanctity of life value system. The “quality of life ethic” is now aggressive. It’s not just these doctors saying, “This is against my ethics to keep this baby alive because I don’t think this is right for the baby.” They’re saying that the parents don’t have a right to make a different choice, and that’s an aggressive act. It is expanding the power of Bioethics, doctors, and courts, into areas of intimate decision making and family life where they do not belong
Why do you think the hospital won’t let Charlie have treatment elsewhere?
Disputes between doctors and families about treatment options are not unusual and occasionally they end up in court. What is unusual in this case is that Charlie’s parents are not being allowed to transfer his care to other doctors in a different hospital or to take the child home.
It’s very disturbing these parents are being deprived of fundamental parental rights. I understand that in the UK the law is different. My understanding is that the best interests of the child are supposed to come first in every circumstance, particularly in the medical context. that gives doctors more power than our laws here. But when you have this kind of dispute about what’s in the best interest of this little baby—which is a subject question—absent a finding that the parents are unsuited to make decisions, it seems to me that they should have the right to make this kind of ultimately decision about their own child. As the people most intimately involved with Charlie and as his parents, they should have the authority over the child—not hospital and not the court.
Until the courts rule that someone else should be Charlie’s decision maker, I don’t understand how a transfer to different doctors or his discharge home can be stopped. There are two conflicting moral values at work here. The mainstream view in Bioethics has discarded the sanctity of human life. They judge value based on a quality of life ethic, and if the quality of life is too low, the predominate view is that it in the best interests—and in some cases, of society—for the very ill or disabled patient to die.
Charlie’s parents obviously disagree; that until every option for care has been exhausted, it is in the best interests for Charlie to be alive. I think they said, “As long as he is fighting, we will fight.”
The “quality of life ethic” ethic turns medicine on its head because the quintessential purpose of medicine has been to help keep people alive—when that’s what they want. under the Bioethics view, that may not be true. Indeed, in this case life itself is being declared a harm to Charlie because he is so ill. That is why we are beginning to see more cases involving injustices such as this.
Why do you think the hospital won’t let the Charlie go home to die?
Because they think that it’s in Charlie’s best interest to die—they believe that. The doctors believe that by taking him, the parents are going to cause needless suffering for the child.
I think it’s [also] an issue of control and whose values are to rule in these very difficult cases. What the courts are saying is that doctor’s values should overrule the parents. I want to remind you that this is the United Kingdom where they may have different laws than here in the United States.
It’s a slippery slope though. If they can do this to Charlie, then who’s next?
That’s the whole problem with what I call “futile care,” which is a bioethics view that permits doctors to refuse wanted—emphasize wanted—life extending treatment that the patient or his family wants. And this bioethics meme also brings in the question of costs. A lot of this is not only about the quality of life; it’s about saving resources. Futile care impositions of the kind being imposed on Charlie don’t just involve sick babies, but also to varying degrees to very ill, disabled, and elderly people.
Part of the issue is saving resources. […] I once asked a futile care supporter, “You’re not going to save enough money in these kinds of futile cases to really make a dent. What comes next?” This person—this is in my book Culture of Death—responded, “Then we should have the right to refuse marginally beneficial care.” Then I said, “Give me an example.” He said, “An 80-year-old woman who wants a mammogram.”
Once the principal is established that doctors can refuse wanted efficacious interventions based on their values or the cost of care, it’s going to spread from these very difficult end of life cases into more commonplace circumstances.
Do you think hospitals have too much power over patients—even in United States?
In some places, yes. For example, Texas has a law that allows a hospital bioethics committee to determine that wanted life-extending treatment should be withdrawn. Once that determination has been made, the patient or family have only 10 days to find an alternative source of care before the treatment will be stopped.
And that’s a real problem because it introduces coercion into healthcare. It subverts trust. These bioethics committees can serve a tremendously important function in helping mediate disputes and helping people work through difficult conundrums, but they should never be made quasi-judicial bodies with decision-making power. That’s not their job. It can lead to tremendous injustices and denies people due process of law.
I hope legislatures will pass laws limiting medical futility or futile care, and ensure that such disputes that do occur should be within the court system—with the right of appeal, with the right of publicity, with the right of cross-examination, and so forth. The burden of proof should be on the hospital and doctors— who want to interfere with family decision making and want to deny treatment that is working.
Remember, in futile care disputes, treatments are not being taken away because they don’t work; they’re being taken away because they do work. The life support is being removed from Charlie precisely because it’s keeping him alive. It’s actually not futile because it’s providing the result that his parents want and perceive as a benefit. In a sense, what is being declared futile is the patient. That’s what’ so dangerous here. You are talking about efficacious treatment—that at one time would have been thought of as not elective—that is going to be removed because it works. That is a tremendously perilous line to cross. Bluntly stated, the attitude is that the patient’s life is futile because it’s not worth living based on pain and suffering, the costs of care, or whatever it might be.
What if the care is against the doctor’s ethics?
When these disputes occur—and I am not saying they can’t be in good faith—the life-sustaining treatments should be maintained as long as it takes for another caregiver to be found. I am certainly not against a doctor saying, “Look, this is against my ethics; I think that we are drawing this out in a way that is unduly burdensome to the patient, and I can’t sleep at night because I think this person is suffering.” The doctor shouldn’t be able to say, “So, I am stopping care.” Instead, the doctor should say, “Please find another doctor to take over this case.” The care should be maintained until another doctor is found. This is not elective treatment.
And this is where bioethics committees, chaplains, and others can help find common ground between families, patients, and doctors who are in disagreement. For example, there might be an agreement to give a patient more time to improve before deciding to remove life support. Or, an agreement can be reached to, say, not provide antibiotics to treat an infection, but to maintain life support.
What’s really ironic is some of the same bioethicists who say choice and autonomy should rule on assisted suicide, then say that “choice has its limits” when it comes to wanted treatment that doctors don’t want to provide because it violates their values. Well, their values are not the issue here.
Were you disturbed by what the letter Vatican initially put out?
Yes, I am not Catholic, but I understand and deeply respect Catholic moral teaching. […] The idea of deciding that continuing treatment will cause undue burden or suffering that doesn’t match the benefit—that’s part of Catholic moral teaching. But the people who possess the decision-making are the patients and the family, not doctors and government. What I found disturbing about that was they were taking that very valuable Catholic moral teaching and expanding into an area where other people get to make that choice. If it’s a religious doctrine, which is when the Vatican releases a statement; it’s a religious choice. That statement at least implied that religious choices about the extent of medical treatments can be made by the doctors; that’s not what the doctors are there for. I was very happy that Pope Francis said, “Wait a minute.”