Ethical issues in medicine? The parent-physician relationship? Until seven years ago, I had given little thought to such questions, but three high risk pregnancies and three premature infants (only one of whom survived) changed my perspective dramatically. The subjects were no longer abstractions; they were personal realities. My husband and I confronted several ethical dilemmas in the hospital care of our three children. Being parents in an intensive care nursery was perplexing and we were unsure of our role, often feeling powerless and incompetent. We had both felt reasonably prepared for parenthood and were successful in our respective jobs. But nothing in our experience prepared us for this kind of parenting (even the basics were unclear) as we asked ourselves:
• What were we "supposed" to do as parents?
• When could we make decisions for our children?
• How would we know that we were making the best decisions?
We struggled through our experiences and don't regret the decisions, we made, but I do regret the energy we spent learning this new role. How much better to have focused that energy directly on our children! Hindsight helped me understand that some physicians guided and enabled us in our parenting role, while others did not. From our experience with both kinds of physicians come these suggestions about the parent-physician relationship and about the role of the physician. The suggestions are based on personal experience, but are also implicit in the literature on family-centered care. (Johnson B.H., et al. Caring ForChildren And Families: Guidelines for Hospitals.Bethesda, MD: Association for the Care of Children'sHealth, 1992.)
With rapidly growing technology, better informed consumers, and pressure from the health care system, the physician's role today is not an easy one. In the parent-physician relationship, neither the traditional paternalistic model, in which the doctor alone makes all decisions, nor the completely laissezfaire model, in which the parents decide, seems to work. I suggest another model:one in which the physician sees his or her role as that of helping parents to fulﬁll their role as advocates and decision-makers for their ill or hospitalized children. From my own background in management, I've borrowed the concept of enabling. An effective manager is not someone who "does it alone," but instead enables others to do their jobs well. The American College Dictionary deﬁnes this word as "to give power, means, or ability, to make competent." A physician can "enable" parents by:
1. Viewing the parent physician relationship as a collaborative one, in which the roles are different but complementary. I could always sense which physicians truly believed that parental involvement made a difference in medical outcomes; they were comfortable with their own role and expertise. Those physicians made us feel empowered as parents!
2. Recognizing and validating parents' own skills, expertise, and experience as these apply in the health care setting. Although we had no medical training or professional experience in health care, my husband, an attorney, and I, a manager, relied on analytic skills both in our work and in making decisions for our children. Some physicians understood that we needed to bring that expertise into the intensive care nursery in order to feel competent as parents.
3. Helping parents decide through identifying and evaluating options. Helping them understand the implications in each option; and choosing a "path" parents can be comfortable with. We wanted our child's physician to present all the options for treatment and to answer our questions about risks, beneﬁts, and outcomes. Then we could feel able to make decisions.
4. Being willing to make a recommendation when the options are overwhelming or too emotionally difﬁcult. I remember vividly the times when we were too weary, too scared, or both, to make a decision alone. We wanted to be able to ask, "What would you do if it were your child?" and receive a response from the physician's heart. And when a physician had already made us feel empowered, competent, and respected as parents, we could feel free to ask that question.
Deborah L. Dokken, M.PA.
Founding member of Parent Partners at GWU Medical Center, Board member of Parent Care, Inc., member of GWlfs Parent Support Advisory Group. This article was first published in the Children's National Medical Center: Ethiscope.