The Semantics of Morality in Pediatrics: How Do Physicians and Parents Come to Terms in Our Ambiguous Medical Climate?

Complexities of language framed controversial medical debate at Seattle’s third annual bioethics conference, presented by The Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital.

Complexities of language framed controversial medical debate at Seattle’s third annual bioethics conference, presented by The Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital.

At the July 13 and 14 conference “Navigating Conflicts When Parents and Providers Disagree About Medical Care,” 250 concerned physicians, bioethicists, social workers, hospital administrators and medical specialists from diverse backgrounds and several countries convened to hear industry leaders discuss issues that defy definition.

What does “in the best interest of the child” mean, and who gets to decide? What is “futile treatment?” It depends on context and who you ask. Terms like “viability,” “lethality,” “medically necessary,” “mandatory treatment” and “extraordinary means” all lack precision in today’s medical climate, where life can be extended, treatments can be embraced or refused, parents of widely varying backgrounds now proactively weigh-in, and physicians are no longer limited to their previously simple black bag of tools. When “quality of life” means various things to different people, complex medical decisions become extremely difficult.

In our melting pot of cultures with widely different views, the practice of medicine is fraught with controversy, especially in pediatrics where patients usually can’t speak for themselves. Who determines what’s best for each individual child? Is it the pediatric physician who thinks she knows what is “medically feasible,” or the parent with a religious or cultural code dictating what they feel is right for their own child? The dictionary is still being written, but “definitions just can’t do this moral work,” according to Norman Fost, MD, MPH, director of the Program in Medical Ethics, University of Wisconsin, and former chair of the American Academy of Pediatrics Committee on Bioethics. “The role of conscience in providing medical care is not clearly codified.”

What’s a physician to do with a Hmong mother whose toddler needs abdominal surgery to prevent serious illness or death, but she refuses because she believes opening her child’s body cavity “lets the spirit out?” Or what of the Christian Scientist parent who refuses insulin while their child faces diabetic coma? What about a Jehovah’s Witness family who declines blood transfusion for their child during surgery? Evangelical Christian parents may prefer to wait for a religious miracle than receive medical intervention for an ailing daughter. The family who embraces traditional Chinese medicine or complementary and alternative medicine may seek untested herbs over pharmaceuticals for their son with a critical infection known to be cured by a simple antibiotic.

As the most complex cases play out there’s an additional legal kicker. At what point should a physician call in Child Protective Services and ask the courts to mandate medical care against wishes of parents who believe they’re doing the right thing by withholding recommended treatment? Alternatively, “so far no court in the United States has ever denied the wishes of a crying mother who seeks treatment to sustain life, even against advice of physicians who determine her child will remain in a persistent vegetative state, with no hope for any ‘quality of life,’” said John Paris, SJ, PhD, professor of bioethics, Boston College. Reverend Paris adds, “Children are not property of their parents. Once born, a baby has individual rights, regardless of what the parents or physicians may want.”

Because we have the ability to sustain life doesn’t mean we always should. At some point medical intervention runs into the slippery definition of “futility.” What was once medically futile has become possible, so at what point should parents or physicians stop trying? Since children are generally incapable of providing their own medical directives for care, physicians and parents are in the precarious position of deciding for them. Insurance companies also dictate what care is possible. “Costs balance reward and risk, playing a role in ethical decisions. How much is too much to proceed? Insurance coverage decisions are a form of collective decision making,” said Benjamin Wilfond, MD, director of the Treuman Katz Center for Bioethics at Seattle Children’s Hospital. “Because quality of life is so hard to measure and define, we are sometimes reduced to talking about costs.”

It gets even murkier when care options for disabled and developmentally delayed children are considered in the bioethics community. Should such children have equal rights to receive organ transplants, when donated organs are such a scarce commodity? “There is some line beyond which listing for organ transplant is no longer prudent,” said David Magnus, PhD, director of the Stanford Center for Biomedical Ethics. A related controversial topic was whether parents, siblings or other relatives should place themselves at risk as live donors to provide organs for a child, regardless of that child’s prognosis or suitability for transplantation. “Should physicians permit parent donors to expose themselves to different degrees of risk for their child rather than strangers?” asked Lainie Friedman Ross, MD, PhD, associate director of the MacLean Center for Clinical Medical Ethics, University of Chicago.

On the separate issue of parental refusal of care Dr. Ross adds, “As physicians we must look long and hard before we call any parental refusal of diagnostic testing or treatment ‘abuse or neglect.’ Parents should have the right to make decisions for their child.” Additionally, “The capacity of some children to participate in decision-making regarding their own care should also be recognized,” according to Douglas Diekema, MD, MPH, professor, Division of Bioethics, University of Washington School of Medicine.

Encouraging dialogue about these controversies in pediatric care, the conference did not seek to provide concrete answers but instead explore some of the tough questions currently facing physicians, parents, courts and state governments. The changing lexicon of pediatric bioethics is struggling to catch up to today’s technologically complex medicine, as parents and physicians write the codes for tomorrow.

For more information about all of the conference speakers, agenda or to view the archived Web cast of the entire conference please visit
Next year’s annual bioethics conference is scheduled for July 25 and 26, 2008. This event will cover “Predicting the Future: Genetic Testing in Children and their Families.” Experts from around the country will meet to discuss complex ethical issues surrounding the use and practice of genetic testing in pediatrics. The annual bioethics conferences are held at Bell Harbor International Conference Center on the waterfront in Seattle, Washington. Details and agenda will be available in October, 2007 at

About Seattle Children’s

Seattle Children’s Hospital, Foundation and Research Institute together deliver superior patient care, advance new discoveries and treatments through pediatric research, and raise funds to create better futures for patients. Consistently ranked as one of the top 10 children’s hospitals in the country by U.S. News & World Report, Seattle Children’s Hospital specializes in meeting the unique physical, emotional and developmental needs of children from infancy through young adulthood. Through the collaboration of physicians in nearly 60 pediatric subspecialties, Seattle Children’s Hospital provides inpatient, outpatient, diagnostic, surgical, rehabilitative, behavioral, and emergency and outreach services to families from around the world.

Located in downtown Seattle’s biotech corridor, Seattle Children’s Research Institute is pushing the boundaries of medical research to find cures for pediatric diseases and improve outcomes for children all over the world. Internationally recognized investigators and staff at the research institute are advancing new discoveries in cancer, genetics, immunology, pathology, infectious disease, injury prevention, bioethics and much more.

Seattle Children’s Hospital and Research Foundation and Seattle Children’s Hospital Guild Association work together to gather community support and raise funds for uncompensated care, clinical care and research. The foundation receives nearly 80,000 gifts each year, from lemonade stand proceeds to corporate sponsorships. Seattle Children’s Hospital Guild Association is the largest all-volunteer fundraising network for any hospital in the country, serving as the umbrella organization for 450 groups of people who turn an activity they love into a fundraiser. Support from the foundation and guild association makes it possible for Seattle Children’s care and research teams to improve the health and well-being of all kids.

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