Blogs | Jul. 11, 2017

An interview with Wesley J. Smith of the Discovery Institutes Center on Human Exceptionalism.

For most parents, the Charlie Gard casethe 11-month-old baby in the U.K. who has been refused experimental treatment that could prolong his lifeis cut and dry. Fit parents are the ones to make informed decisions regarding their childs health. Watching what is unfolding with Charlie and his parents has provoked a number of questions about medical kidnapping, doctors refusing care, parental rights, and why Charlie cant seek treatment elsewhere or go home to die in the peace of his home?

To answer these questions, I consulted via phone with the author of Culture of Death: The Age of Do Harm Medicine,Wesley J. Smith, who is a lawyer and a senior fellow at the Discovery Institutes Center on Human Exceptionalism and a consultant to the Patients Rights Council.

Why wouldnt you call what is happening to Charlie Gard a medical kidnapping considering the hospital wont 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 dont want to use overly provocative language. Kidnapping is a crime; this is not a crime. In fact, its 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. Its not just these doctors saying, This is against my ethics to keep this baby alive because I dont think this is right for the baby. Theyre saying that the parents dont have a right to make a different choice, and thats 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 wont let Charlie have treatment elsewhere?

Disputes between doctors and families about treatment options are not unusual and occasionally they end up in court. Whatisunusual in this case is that Charlies parents are not being allowed to transfer his care to other doctors in a different hospital or to take the child home.

Its 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 whats in the best interest of this little babywhich is a subject questionabsent a finding that the parents are unsuited to make decisions, it seems to me thattheyshould 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 childnot hospital and not the court.

Until the courts rule that someone else should be Charlies decision maker, I dont 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 interestsand in some cases, of societyfor the very ill or disabled patient to die.

Charlies 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 quintessentialpurpose of medicine has been to help keep people alivewhen thats 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 wont let the Charlie go home to die?

Because they think that its in Charlies best interest to diethey believe that. The doctors believe that by taking him, the parents are going to cause needless suffering for the child.

I think its [also] an issue of control and whose values are to rule in these very difficult cases. What the courts are saying is that doctors 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.

Its a slippery slope though. If they can do this to Charlie, then whos next?

Thats the whole problem with what I call futile care,which is a bioethics view that permits doctors to refuse wantedemphasize wantedlife 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; its about saving resources. Futile care impositions of the kind being imposed on Charlie dont 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, Youre not going to save enough money in these kinds of futile cases to really make a dent. What comes next? This personthis is in my bookCulture of Deathresponded, 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 ontheirvalues or the cost of care, its going to spread from these very difficult end of life cases into more commonplace circumstances.

Do you think hospitals have too much power over patientseven 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 thats 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. Thats 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 systemwith 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 dont work; theyre being taken away because theydowork. The life support is being removed from Charlie precisely because its keeping him alive. Its actually not futile because its providing the result that his parents want and perceive as a benefit. In a sense, what is being declared futile is the patient. Thats what so dangerous here. You are talking about efficacious treatmentthat at one time would have been thought of as not electivethat is going to be removed because it works. That is a tremendously perilous line to cross. Bluntly stated, the attitude is that the patients life is futile because its not worth living based on pain and suffering, the costs of care, or whatever it might be.

What if the care is against the doctors ethics?

When these disputes occurand i am not saying they cant be in good faiththe 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 cant sleep at night because I think this person is suffering. The doctor shouldnt 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.

Whats 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 dont 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 doesnt match the benefitthats part of Catholic moral teaching. But the people who possess the decision-makingare the patients and thefamily, 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 whereother peopleget to make that choice. If its a religious doctrine, which is when the Vatican releases a statement; its a religious choice. That statement at least implied that religious choices about the extent of medical treatments can be made by the doctors; thats not what the doctors are there for. I was very happy that Pope Francis said, Wait a minute.

See the article here:

Charlie Gard and the Age of Do Harm Medicine - National Catholic Register (blog)