In The Journal of Clinical Ethics Dr. Edmund Howe recently described one mother's reply when a doctor suggested DNR status for her infant, who had been resuscitated seven times: "You must imagine that my baby, there, is the next Joe Namath and that before he plays pro football, he will go to Harvard." Who protected this child's best interests—a physician concerned about prolonging the dying process, or a parent with faith that her child will overcome the odds? For Dr. Howe the most difficult aspect of pediatrics involves determining when to override parents' decisions.
Fifty years ago such quandaries were virtually nonexistent. Medical technology for infants and children was rudimentary by today's standards, and "Father Knows Best" characterized medical and parental practice. Physicians administered treatments they thought best for patients without much explanation, and parents raised children with minimal intrusion beyond the immediate family. The last half of the twentieth century, however, brought medical innovation and legal developments calling for deeper ethical reflection about decisions for critically ill infants.
CPR became possible, but outcomes were not always experienced as beneficial in the long run. While development of the doctrine of informed consent promoted shared decision making by physicians and parents, it did not settle the question of who prevails when disagreement arises about initiating, withholding, or withdrawing medical treatment. Court rulings during the 1960s and '70s protected adults from intrusion by the state regarding reproduction and other personal matters, but during the same period government was given increased authority to investigate and prosecute alleged parental abuse and neglect.
Today there is no simple formula for deciding whether the doctor or mother should decide about baby "Joe Namath"'s treatment. But guidelines do exist for application to specific cases. Ethical practice requires not just treating a body but respecting the whole person, including their beliefs, values, and goals.
Therefore, parents are generally assumed to be the best decision makers for children, even when they reject physicians' recommendations. But the general rule that parental choice determines medical care is not absolute, particularly if death or disability could result. In order to override parents' decisions, however, a legal proceeding may be required.
With the advent of ethics committees as alternative mechanisms for resolving difficult cases, much has been learned about communication, attitudes, and behaviors that have a bearing on the physician-parent encounter. Before asking whether a particular parental decision should be challenged, the team should consider whether everything has been done to create and sustain the best possible environment (literally and figuratively) for decision making.
This begins with communication that is neither overly optimistic nor pessimistic. Given the extreme physical and emotional stress experienced by parents of sick newborns, the care team may hesitate to deliver a poor prognosis or admit uncertainty. But waiting to explain all variables until the case becomes critical is likely to increase the very conditions one originally sought to avoid. Some parents may also question whether the team "really knows what it's doing" when their child's condition seems to suddenly call for decisions about which they have been given no previous information or preparation.
The physician primarily responsible for an infant's care should assume responsibility for consistent communication with the family in order to put the recommendations of various specialists and consultants into context and keep the focus on the baby's underlying condition and goals of treatment. When problems are detected, a preliminary conversation should occur in which the opening line could be something like this: "You may remember I mentioned the possibility that your baby has a condition called X, and you agreed for us to do the necessary tests to rule out or confirm that diagnosis. Of course, we hope the tests will show that everything is fine. It is too early to know for sure, but if you feel up to it I would like to give you a little more information about X and see if you have any particular questions or concerns. I am also interested in how you are coping with everything, and whether there is anything we can do for you."
In a very real sense the parents of critically ill infants are also our patients. Concern for and attendance to their physical exhaustion, emotional stress, and possible spiritual crisis convey respect and maximize opportunities for meaningful communication. (The care team should also attend to its own need for physical rest, emotional and spiritual solace, and practical advice.) If parents wish to include family members, spiritual advisors or other trusted parties in decision-making conferences, they should be welcomed.
The aggregate effect of visual and behavioral cues should not be ignored. Some parents feel intimidated by "white coats" at care conferences or ethics consultations. They may be bewildered or offended by being asked to speak with people to whom they have not been properly introduced, and being called by their first names by providers with whom they have no previous relationship.
Whether attained by agreement or legal decree, final decisions about care may not resolve ethical uncertainty or emotional fall-out over difficult cases. Retrospective case review and follow-up communication with parents can be instructive and healing. Resolving conflict between parents and providers should not focus solely on the important question, "Did we make the right decision?" We should also ask, "Did we do what we could for this patient and these parents?"
