An Impossible Dilemma: Choosing The Best Treatment For a Sick Child (Part I)

Mother and child in waiting roomA two-part study examining the parent-physician relationship regarding treatment in cases of severely and critically ill children.  

 Part I

It is a decision most parents won't have to face but hundreds of thousands of mothers and fathers have to make the gut-wrenching choice in deciding how to treat an ailing child. Parents and attending physicians have to find ways to work together through various treatment options and, looking out for the best interest of the child, come to an agreement on specific terms. The child's survival is not always guaranteed and is sometimes the greatest deterrent to the treatment.

A competent patient can make a treatment choice that is contrary to the advice of his or her treating physician, even if the choice results in death. However, consider the situation where there is a disagreement in treatment choice between the parent of an ill child and the physician. These disagreements often occur in cases where the prognosis for the severely ill infant or child is that they will survive, but with a poor quality of life. The presumption is that the parent has authority to make treatment decisions for a child when the child does not have the capacity to do so. While this is true, the treatment choices of the parent on behalf of the child must be in the child’s best interests.

What should the health care professional do when faced with the situation of a parent who disagrees with the recommended course of treatment? Like the parent, the physician believes the treatment recommendation is in the best interests of the child or patient. Should it be considered a ‘problem’ when a parent disagrees with the physician's recommendation?

Like most issues in medical ethics, this ‘problem’ is often one of perception. Simply stated, both the parent and the physician feel that they are acting in the best interest of the child. After acknowledging this fundamental point, the physician should try to determine why there is a disagreement. As stated by the authors of Bioethics in Canada

“Ethical dilemmas will be misconstrued, if the clinical situation is not understood in all its subtle medical and human complexity. The maxim of method in clinical ethics is: each case contains its own resolution. Understand the patient, body and biography as comprehensively as possible, and the balance of elements required to resolve an ethical uncertainty, conflict or dilemma will emerge”.

In most cases, to achieve a resolution is often a matter of approach. Understanding the patient, in this case not only the ill infant or child but also the family and its dynamics, together with addressing certain basic ethical principles, will assist in achieving a resolution. First, the physician should assure the family that she too is acting in the best interest of the child. The principle of beneficence, or acting in ways to promote the welfare of others, is at the core of medicine. Non maleficence, or acting so as not to cause needless harm to others, is also a fundamental principle of medicine

Something as simple as reassuring the parent that the physician is following these two principles, just as the parent is, will hopefully commence a dialogue.

Second, acknowledge that the decision to be made is one that may have lasting implications for the family and that the parents are the ones who are deferred to as the decision-makers for the child. This will hopefully also serve to reassure the parents. While these two points may seem self-evident and not worth repeating, they nevertheless are extremely important to hear from the parent’s perspective. Often, we forget the self-evident. Restating, or stating in the first place, something that ‘goes without saying’, helps to break down barriers and also acts to stop barricades from being built.

A third point should be emphasized with the parents when addressing the disagreement. Much can be said to giving credence to the views of the physician. The physician can be said to be objective and have greater medical knowledge and experience on her side. In addition, she presumably would have consulted with other specialists and have reached a recommendation based on a number of factors. The physician, therefore, has the combined input of more than just the one discipline. It is important to point out that the health care professional’s opinion is likely broader and, hopefully, objective.

By addressing these points, a collaborative approach between the parents and the physician will hopefully be achieved.

Continued in Part II

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