Should parents' belief in miracles trump medical expertise in end-of-life decisions?
In a study published in the Journal of Medical Ethics, doctors from Great Ormond Street Hospital in London asked for lawmakers to change the current British legal system to allow physicians to have greater influence in cases with terminally ill patients, adding parents' religious beliefs should not be a "determining factor." Researchers argued parents waiting for a miracle are putting their children through unnecessary and painful treatments.
"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 or adult has been argued as inhumane," the researchers wrote. "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 doctors took a closer look at 203 cases at Great Ormond Street Hospital which involved end-of-life decisions for parents over a three-year period. In 186 cases, parents agreed with medical professionals that further pointless, aggressive treatment should be removed.
In the remaining 17 cases, however, parents insisted that medical treatment be provided even if health professionals advised against it. The doctor's rulings were in accordance with the guideline set forth by the British Royal College of Paediatrics and Child Health guidance, and were based on the fact that medical evidence suggested the benefits derived from continued procedures would not improve the case and may increase the patient's suffering.
Eleven of these cases were due to parents arguing that treatment should not be stopped because there was always a chance of divine intervention or a miracle, and the opinions of the doctor were negative and wrong. Parents from various faiths including Islam, Judaism and Roman Catholicism argued against ending treatment, with Christian fundamentalist evangelicals from Africa being the most common objectors.
In five of the 11 cases, parents were finally convinced to terminate unnecessary care after religious leaders from outside the hospital were called in to help counsel the parties.
In another case, a High Court decision allowed doctors to end care for a terminally ill patient. For the remaining five, four eventually died even though intensive care was continued. One survived with profound neurological disability.
The other six cases where parents objected but religion was not a factor were resolved without any legal, ethical or religious community support. Intensive care was eventually removed with the parents' agreement in all these cases. Five of these children died, and the one who survived had profound neurological disabilities as well.
In an accompanying editorial from the journal's editor, Professor Julian Savulescu, director of the Institute of Ethics at Oxford University in the U.K., agreed with the findings and suggestions, adding that especially in the British publicly-funded medical system with limited resources, medical attention should be given to people who are more likely to survive.
"Faced with the choice between providing an intensive care bed to a (severely brain damaged) child and one who has been at school and was hit by a cricket ball and will return to normal life, we should provide the bed to the child hit by the cricket ball," he argued.
Dr. Arthur Caplan, who heads the division of medical ethics for NYU-Langone Medical Center in New York City, told ABCNews.com he believed doctors should have the final say because they advocate for the patient. Caplan, who was not involved with the study, cited a personal case of a six-month old who had been so severely beaten by her father that there was no way she would survive. He said the mother could not accept that her child was going to die and kept pushing for treatment because she believed God would intervene and let her daughter make a miraculous recovery. It wasn't until Caplan pointed out that God could bring a miracle without the baby being attached to life support, that she finally agreed to terminate intensive care.
"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 explained. "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."
But Dr. Margaret Moon, assistant professor of pediatrics and the Freeman Family scholar in clinical ethics at the Johns Hopkins Berman Institute of Bioethics, believes it shouldn't be a decision for the courts. She argued to HealthPop that most hospitals have policies in place that state that physicians can end care if they feel treatments are futile and may cause more suffering. But, because the definition of futile can vary from person to person, it's often hard to say when enough care has been given.
"The hard question is what kind of care is futile," she said. "Maybe the doctors have a definition of futility that is different from the family."
In her experience, religion has played a role many times in a family's decision to end or continue medical support for their child. But, instead of legal action, she believes that medical professionals and doctors could benefit more from "effective communication." Too many times, medical professionals feel shut down when a family says they want to wait for a miracle; instead, they should use this as an opportunity to discuss to what exactly further treatment entails and what the guardians really mean when they say do everything medically possible.
Leading ethicist Dr. Mark Sheehan, also of the Institute at Oxford, also disagreed with the need for legal action, pointing out in another editorial that the issue was more than just religion versus medical science and to write about it that way was a "red herring." Religious leader J.R. Brown, a spokesman for the New York chapter of Jehovah's Witnesses, uttered similar statements to ABCNews.com, elaborating that parents should do everything in their power as long as scripture doesn't argue against it.
"How many times have we heard stories where physicians say the situation is hopeless and the patient goes onto make a miraculous recovery?" he questioned.
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