Arthur Caplan, the head of the division of medical ethics at NYU Langone Medical Center, recalls a case of a man who had beaten his six-month-old child to death. It was a horror the mother simply could not accept.
A deeply religious woman, she pushed the doctors to do more, telling them that God would intervene and allow her daughter to make a miraculous recovery. For several hours there was a tense standoff between caregivers and parent.
She finally allowed the child to come off life support when Caplan told her, "God may bring you a miracle but your baby does not have to be attached to a machine for this happen."
When a child is seriously ill or injured, parents understandably move heaven and earth to save them. However, a new study has found that sometimes deeply religious families test the limits of medical science by asking doctors to go to extremes to prolong life.
Writing in the Journal of Medical Ethics, the investigators reviewed 203 cases over a three-year period that involved end of life decisions. In the majority of instances, parents ultimately agreed to end treatment after meeting with caregivers and discussing the options. But in a small number of cases -- just 11 -- the parents insisted on continuing intensive care while they prayed for divine intervention and a complete cure, even after being told there was no hope for recovery.
Overriding Religious Beliefs
Such scenarios bring up all sorts of ethical and legal dilemmas for medical caregivers who must try to balance a parent's wishes with what they think is best for their patient. Caplan says in most cases, they ultimately advocate for the patient.
"You have to take beliefs into account but you can't let any parent for any reason hijack what you as a doctor believe is in the child's best interest," he says. "If you think what they want will cause pain and suffering and further treatment is pointless, a doctor should not do it even if the parents say Jesus spoke to them."
In situations where parents refuse lifesaving medical care on religious grounds the law is clear: Doctors can go to court and legally compel them to accept treatment if it is deemed life saving. But when the tables are turned and parents insist on sustaining life by any means, few doctors are willing to make it a legal matter. The authors of the study say it's time for this to change.
"Spending a lifetime attached to a mechanical ventilator, having every bodily function supervised and sanitized by a carer or relative, leaving no dignity or privacy to the child and then adult, has been argued as inhumane," they say in an accompanying editorial. "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."
Not all religious leaders agree. J.R. Brown, a spokesman for the New York chapter of Jehovah's Witnesses says that parents should be allowed to do everything they can so long as it doesn't violate scripture.
"How many times have we heard stories where physicians say the situation is hopeless and the patient goes onto make a miraculous recovery?" he asks.
The majority of physicians are not unsympathetic to parents of faith. Dr. Ian Holzman, chairman of the medical ethics committee at Mount Sinai School of Medicine in New York City, stresses that the main thing caregivers must do is respect parental faith and try to honor their beliefs as long as there is no undue harm to the patient. And he points out, sometimes it's just a matter of demonstrating a little empathy.
"Some parents will never make a decision to discontinue life support. They will never say don't do everything even when they understand that "everything" may mean torture for their child," he says. "But often they are OK when the physician says enough is enough."
According to Holzman, Jehovah's Witnesses and Christian Scientists are the most likely to refuse medical treatment on religious grounds whereas Orthodox Jews, Muslims and some fundamental Christians are the faiths most likely to ask for life sustaining treatment.
The authors of the study include children's intensive care doctors and a hospital chaplain. Various different faiths were represented among the parents, including Christian fundamentalism, Islam, Judaism, and Roman Catholicism.
In their commentary they stress that religious beliefs provide vital support to many parents in a time of dire need but still express concerns that those same beliefs are increasingly leading parents to insist on the continuation of aggressive treatment long after it make sense.
- Arthur Caplan