Sick Kids to Be Given 'Futile' Treatment?

Excerpted from "Deeply Held Religious Beliefs Prompting Sick Kids to Be Given 'Futile' Treatment," Science Daily, by Andrew Hough. August 13, 2012--Parental hopes of a "miraculous intervention," prompted by deeply held religious beliefs, are leading to very sick children being subjected to futile care and needless suffering, suggests a small study in the Journal of Medical Ethics. The authors, who comprise children's intensive care doctors and a hospital chaplain, emphasize that religious beliefs provide vital support to many parents whose children are seriously ill, as well as to the staff who care for them. But they have become concerned that deeply held beliefs are increasingly leading parents to insist on the continuation of aggressive treatment that ultimately is not in the best interests of the sick child. It is time to review the current ethics and legality of these cases, they say.

They base their conclusions on a review of 203 cases which involved end-of-life decisions over a three year period. In 186 of these cases, agreement was reached between the parents and healthcare professionals about withdrawing aggressive, but ultimately futile, treatment. But in the remaining 17 cases, extended discussions with the medical team and local support had failed to resolve differences of opinion with the parents over the best way to continue to care for the very sick child in question. The parents had insisted on continuing full active medical treatment, while doctors had advocated withdrawing or withholding further intensive care on the basis of the overwhelming medical evidence. The authors emphasize that parental reluctance to allow treatment to be withdrawn is "completely understandable as [they] are defenders of their children's rights, and indeed life." But they argue that when children are too young to be able to actively subscribe to their parents' religious beliefs, a default position in which parental religion is not the determining factor might be more appropriate. They cite Article 3 of the Human Rights Act, which aims to ensure that no one is subjected to torture or inhumane or degrading treatment or punishment. "Spending a lifetime attached to a mechanical ventilator, having every bodily function supervised and sanitized by a care giver or relative, leaving no dignity or privacy to the child and then adult, has been argued as inhumane," they argue.

And they conclude: "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." In an accompanying commentary, the journal's editor Professor Julian Savulescu advocates: "Treatment limitation decisions are best made, not in the alleged interests of patients, but on distributive justice grounds." In a publicly funded system with limited resources, these should be given to those whose lives could be saved rather than to those who are very unlikely to survive, he argues. "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 writes. In further commentaries, Dr Steve Clarke of the Institute for Science and Ethics maintains that doctors should engage with devout parents on their own terms. "Devout parents, who are hoping for a miracle, may be able to be persuaded, by the lights of their own personal...religious beliefs, that waiting indefinite periods of time for a miracle to occur while a child is suffering, and while scarce medical equipment is being denied to other children, is not the right thing to do," he writes. Leading ethicist Dr Mark Sheehan argues that these ethical dilemmas are not confined to fervent religious belief, and to polarize the issue as medicine versus religion is unproductive, and something of a "red herring." Referring to the title of the paper Charles Foster of the University of Oxford, suggests that the authors have asked the wrong question. "The legal and ethical orthodoxy is that no beliefs, religious or secular, should be allowed to stonewall the best interests of the child," he writes. Full story can be found here.

CMDA CEO David Stevens, MD, MA (Ethics): "The Science Daily significantly toned down their reporting of the article in The Journal of Medical Ethics (the same journal that recently published an article advocating ‘post-birth abortion’, i.e. infanticide). The original paper was so anti-religious and anti-parental rights that it generated newspaper headlines around the world castigating the religious for ‘torturing’ their children.

"The article espouses a stark utilitarian ethic claiming, without supporting data, that other children are denied lifesaving interventions because of these parent’s decisions. They also argue that parent’s religious beliefs should have no sway in the care of their children since the children cannot 'subscribe' to any religious view. Therefore, according to their reasoning, a secularist worldview should guide the state in making life and death decision for severely disabled children.

"All of us have taken care of patients where hope or denial outweighs their reasoning in making healthcare decisions, but there are better alternatives than steamrolling over their religious beliefs, attempting emotional blackmail or denying parental rights. Alternatives include:

• Transfer care to a physician who better understands and is more supportive of the parent’s religious persuasion. Parents are more likely to accept their advice.
• Allow time for parents to work through their denial and time for the healthcare team to build rapport and fully explain their assessment.
• Build trust. Marshall the family’s pastor, priest, rabbi or other religious leader whom the parents already trust. They may help the family work through the decision.

"In reality, the authors demand a new paternalism rather than autonomy. Doctors and ultimately the state would become the final arbitrator over life and health. They dangerously redefine parental beneficence as maleficence. While they claim they are for justice, they single out those with religious beliefs to be stripped of it.

"Sadly, this is another example of having more 'ethicists' than ever before but being less ethical.”

Standards4Life: Faith and Health