Biomedical ethicists, clinicians and parents gathered at Children’s third annual bioethics conference to discuss the difficult issues that arise when parents and providers disagree about medical care.
“Navigating Confl icts: As the attending pulmonologist, When Parents and Providers Wilfond’s task was to help the parents decide the best course of action to take Disagree about Medical for the newest member of their family. Care” was the topic of the Wilfond recounted this story to 250 physicians, nurses, social workers, third annual conference ethicists, hospital administrators and hosted by The Treuman parents gathered at the third annual con- Katz Center for Pediatric ference of The Treuman Katz Center for The Rev. John Paris, who served as Pediatric Bioethics at Children’s Hospital. an expert witness in the landmark Bioethics, the nation’s fi rst Raphael’s story — one of many biomedical cases of Karen Ann Quinlan and Baby K, discusses the center dedicated solely thought-provoking medical cases dis- right of parents to refuse treatment cussed by the nation’s leading bioethicists for their children. to the study of ethical at the two-day conference — underscores issues that arise in pediatric what the science of medicine cannot health-care delivery do: grapple with the diffi cult issues that surround what is in the best interests and research. of a child and family.
On an April morning in 1995 at the University of Arizona, Dr. Benjamin No cut-and-dry answers Wilfond received a frantic phone call By the 1970s, new medical treatments from a young resident. and technological innovations in pediatric “Thank goodness you’re back on medicine were not only making children service,” said the resident. “I have very feel better, they were helping them get religious parents who refuse to withdraw better. Yet these advances also created ventilator support for their baby. They expectations — sometimes on the part are waiting for a miracle.” of providers and sometimes on the part The parents’ desperation was real: of parents — that extraordinary measures Their two-week-old son, Raphael, was should be taken to prolong a child’s life born with campomelic dysplasia, a even when death from disease or injury lethal form of dwarfi sm characterized by was imminent. severe breathing problems and profound “The ‘if it can be done, it must done’ intellectual disability. The condition mentality is not always the best way,” says would require him to have 24-hour-a-day John Paris, SJ, PhD, professor of bioethics assistance from a ventilator for as long at Boston College. “Along with the value as he lived.
8 connection CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER Pediatrician Dr. Norman Fost, director of the Program in Medical Ethics at the University of Wisconsin, responds to a question about “futile” treatments. placed on prolonging life, you have Communication … and humility when a child is in jeopardy, should we to take into account the level of the override a parent’s decision, and then child’s suffering.” For Raphael, communication helped we need to do so with humility.” In Raphael’s case, Wilfond gently his parents come to a mutual agreement As today’s technologically complex explained the diffi cult options to the with providers. medicine continues to spur ethical boy’s Spanish-speaking parents through However, communication doesn’t debates in pediatrics, one thing is for a translator: Withdraw ventilator support help all providers and parents to agree. certain: Both providers and parents and allow Raphael to die, or take Raphael Dr. Lainie Friedman Ross, director will be part of the discussion. home and provide 16-hour-per-day care of the Ethics Consultation Services at END because insurance would pay for only the University of Chicago, believes that eight hours of daily home nursing care. disagreements arise when providers and Raphael’s mother asked, “Will my parents have different value judgments son suffer if he is permanently on about medical treatments or do not a ventilator?” assess the probability of risk to a child Wilfond responded that there in the same way. was no clear answer to her question. In her pediatrics practice, Ross has He explained that some children were had parents refuse to allow their children very uncomfortable on the ventilator and to be vaccinated for measles out of fear families had a diffi cult time providing that the vaccine may cause brain damage. care, while other children and families “I respond to their concerns by pro- did quite well. viding information and asking them to At this news, Raphael’s father clasped think about the risks to which they are his hands together in prayer and gave unwittingly exposing their children,” says The annual conference provides a forum for thanks to God for providing the miracle Ross. “The risk of brain damage from clinicians, ethicists, hospital administrators he’d been waiting for. the measles vaccine is one in one million, and parents to explore ethical issues in Wilfond was stunned. He assumed whereas the risk of brain damage from pediatric health care. the long-awaited miracle was a cure. getting measles is 1,000 times greater.” In reality, Raphael’s parents under- Ross advocates listening to parents’ stood that a cure was not possible. Their concerns, educating them about the miracle was in hearing that Raphael might risks and benefi ts to the child and not View this year’s conference presentations at not suffer on mechanical ventilation. severing the relationship if a parent goes http://bioethics.seattlechildrens.org/events/ “That case taught me not to make against the provider’s recommendations. pediatric_bioethics_conference/agenda.asp assumptions,” reveals Wilfond, who now “As physicians we must look long and directs the Children’s bioethics center. hard before we call any parental refusal “After working with Raphael’s parents, I of diagnostic testing or treatment ‘abuse started asking parents what information or neglect.’ Parents should have the right they needed to make the best decision for to make decisions for their child,” says themselves, their child and other siblings.” Ross. “Only in the rarest of circumstances,
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