COMMENTARY

Should Doctors Decide When It’s Futile to Keep Charlie Gard Alive?

Arthur L. Caplan, PhD

Disclosures

July 27, 2017

Hi. I'm Art Caplan at the Division of Medical Ethics at the NYU School of Medicine.

Many of you have heard about the sad, tragic case of Charlie Gard. He is a little boy in England who is at the Great Ormond Street Hospital for Children in London. He suffers from a mitochondrial disease.

You'll remember that the mitochondria are the little battery packs that give energy to permit cell division. Charlie does not have normal mitochondria. Unfortunately, he has been left paralyzed, with an underdeveloped brain. He is blind and deaf, and is unable to breathe on his own. He really suffers because he has disabilities that result from the failure of his cells to grow and thrive. Indeed, his condition is very rare. Only a few dozen kids have ever been born with this disease. Most of these kids die because the cells are so malformed that the organs can't work properly.

The doctors at the Great Ormond Street Hospital for Children have been caring for Charlie, but they think they've run out of options and things to provide. This gets us to the question: Can doctors ever say it's futile, there's no point in continuing, we've done everything we can; we have to shift to palliation, to support for the family, to support for the patient in terms of pain control, and emotional support in the case of children for parents? Can doctors ever say, that's it, there's no more to do?

The doctors at this London hospital tried to do that, but the family absolutely did not agree. The mom and dad said, "We don't want to give up on Charlie; we're hearing that there may be some doctors in the United States, two different doctors who have said they might have a treatment that could benefit Charlie."

President Donald Trump weighed in on this situation and said that if the parents want to pursue this, they ought to have the right to do that. Even the Pope said the parents should decide how far they want to push in the care of Charlie Gard.

The parents raised a lot of money on the Internet—almost 2 million dollars. They can afford to bring doctors to Charlie. One doctor, a mitochondria expert from Columbia University, visited Charlie. They could conceivably move Charlie to the United States. The US Congress made Charlie and his family permanent residents, because there's so much sentiment in our Congress and on the part of the President to let Charlie's parents do whatever they wished to try to prolong Charlie's life.

It's a tough moral standoff. In England, more deference is given to doctors than you'd find in the United States. The English standard says if doctors think that what the parents want to do might lead to suffering or pain for the child, then the parents have to yield to a guardian. A guardian was appointed for Charlie, and that guardian agreed with the doctors that it was time to stop. Then Charlie's parents went to court, and they have been all through the British courts, including the UK Supreme Court, which all sided with the doctors. Still, the international media has paid attention to Charlie, and the parents were not ready to let go; they still wanted to do everything possible.

I think there is a line in the sand which doctors should be able to draw that says, we've reached futility. That doesn't mean abandoning the patient or the family, but it means stopping efforts to try to prolong any treatments that might be causing Charlie to suffer. If indeed he's being harmed, hurt, or suffering in any way, then reaching out to try a long-shot experimental procedure isn't something that doctors at the children's hospital in London have to agree to. Nor is it something if the courts agree and review this that doctors have to say yes, we've got to continue to prolong a life that's turned into one of misery and suffering.

To me the standard is, is Charlie or any patient harmed or hurt by continuing care? If they are, then consideration should be given to listening to the doctors and saying we've reached the end, it's time to back off, it's time to provide palliation, but we're not going to prolong a life where there's just suffering and nothing more. If Charlie isn't suffering, if he's not in pain, then I think the parents have more of a case to driving care on; this also goes for anyone who's taking care of a grandparent or anybody else. If the person isn't suffering yet and they want to continue care, that's a different story.

Remember [that] Charlie's guardian, the courts, and Charlie's doctors, who are real experts at this particular London hospital, all agree [that] what the parents want to do isn't good for Charlie. Sometimes love can blind parents to what might be in the best interests of their child.

I'm Art Caplan from the Division of Medical Ethics at NYU. Thank you for watching.

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