A London judge ruled with a "heavy heart" Monday that an 8-year-old boy must be taken off life support, regardless of his Christian parents' prayers for a miracle.
The decision came just after the Journal of Medical Ethics released a study in which British researchers expressed worry that parents who hope for divine intervention may act against the best interests of their child.
"We suggest it is time to reconsider current ethical and legal structures and facilitate rapid default access to courts in such situations when the best interests of the child are compromised in expectation of the miraculous," the authors—two doctors and a chaplain from a London children's hospital—concluded.
The study examines end-of-life cases over a three-year period. In the vast majority (186 of 203 cases) parents agreed to limit or withdraw "invasive therapy" that potentially would extend a child's life by artificial means. But in 11 of the 17 remaining cases, parents cited religious reasons—"expectation of divine intervention and a complete cure"—in arguing for the continuation of full medical treatment.
Parents resolved to withdraw treatment in five of those cases after meeting with religious leaders. However, aggressive treatment continued for five other children; in four of those cases, the children died.
"While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of 'miraculous' intervention," the study concluded.
The study, accompanied in the journal by four critical responses, quickly drew criticism.
"They show no data to prove that these children are suffering," said David Stevens, CEO of the Christian Medical and Dental Association. "That's based on this secular assumption that being a human being doesn't make you a person; that your value and quality of life is based upon your abilities."
Parents naturally hope for miraculous healing, says Paige Cunningham, executive director of the Center for Bioethics and Human Dignity at Trinity International University. However, she said Christians need to be careful not to drift into vitalism, an elevation of biological life above all other values.
"Because we know biological life is not the highest value of our existence, parents don't have an obligation to extend life at all costs," said Cunningham. "In some cases, it might be that they just need the reassurance that letting go is not giving up on God or their child, and that it is okay to let go."
Yet she also believes courts should be reluctant to intervene, even if a child is not old enough to assent to treatment. In many cases, characterizing the child's condition as inhumane or torture sensationalizes the actual situation, especially if parents believe the spiritual values being protected are more important than physical ones.
"There are sometimes situations in which a parent's decision is overridden because it's not aggressive enough," said Eugene Volokh, a religious freedom scholar at the UCLA School of Law. "But if the parents say [they] want more care and doctors say it is futile, [then] generally speaking, the parents' decision prevails.
"Mere futility is not reason enough in that situation," he said.
If courts did enact a streamlined procedure for doctors to override parents' religious requests, doctors may use that as an excuse without going the extra mile to honor parents' wishes in the first place, says Robert Orr, a medical doctor and clinical ethicist. He noted concerns that the study singled out religious beliefs as the issue to be dealt with in end-of-life cases, when many other factors are almost always at play.
"These cases are so rare that streamlining the process would be worrisome," he said.
Sue Wintz, a Healthcare Chaplaincy consultant and former pediatric chaplain, also disagrees with the researchers' assertion that doctors should seek legal action to override parents' wishes. She says religious beliefs need to be taken in context because they are part of what makes the core of a person or family.
"I understand the discomfort of the doctors in dealing with this, but it's really not about the doctors," said Wintz. "It's about what the family wants to do."
Some faith traditions teach parents that not believing in a miracle means not having enough faith, she said. Such parents think they have to show faith up until the end.
"Parents worry that they weren't faithful enough," she said. "But sometimes a miracle isn't always physical. Maybe the miracle is that the child is no longer suffering."
And in cases of true physical miracles, Orr notes that God does not need machines in order to intervene. "God can intervene above and beyond the ventilator or the dialysis machine," said Orr, "if he is going to do it supernaturally."
