Using the ''F'' Word - When Parents and Doctors Disagree

The Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital kicked off its third annual conference today in Seattle.

The Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital kicked off its third annual conference today in Seattle. Ethicists gathered to discuss fundamental issues in the pediatric care of children, topics such as who decides when the treatment of a child is futile.

Parents Request “Futile” Treatments
What are the limits of medical intervention? When should treatment be considered “futile”? The majority of the medical community agrees that care is futile when it does not achieve its purpose. But medical ethicist Dr. Norman Fost, professor of pediatrics and bioethics, University of Wisconsin, cautioned that there is no definitive definition of futile treatments.

“The fact that a treatment hasn’t been tried or hasn’t been successful in the past does not mean it will not be successful in the future,” said Fost. “Some medical professionals deem any treatment that has not worked in 100 cases is not viable. Many parents argue a one in 10,000 chance still isn’t zero.”

To determine whether a treatment is futile, ethicists argue that we must look at whether the patient is gaining anything from the treatment. If life-saving actions are taken for a child whose quality of life will be poor, who does that serve? Fost reminds us that these are personal value judgments and not medical judgments. This is why, in part, the medical community cannot agree on a specific definition for futility in medical treatments. The search for an ultimate definition of futility is futile, Fost argues.

Can Physicians Refuse to Provide Life-Prolonging Medical Interventions?
The father of a child with severe neurological damage asks for a treatment that the medical community agrees will not work. In fact, it may put the child at even higher risk. But the father goes to the media and the court; the court orders the hospital to give the treatment a try. Since no U.S. court has ever refused life-sustaining treatment without parental consent, should hospitals save the court costs and just abide by whatever the parents request, for as long as they request it?” asked John J. Paris, SJ, PhD, professor of bioethics, Boston College. “Is that responsible medical care?”

“We are all going to die,” said Rev. Paris. “So what is the best way to treat a dying child - and who decides?” Paris suggested that treatment must be in the best interest of the patient. So, if technology can prevent death, but it cannot restore well-being, what is the benefit? Balancing the benefit and burden of medical intervention is the job of everyone involved in the care of the patient.

Pediatric Sibling Transplants
Using sibling transplants for bone marrow and other regenerative materials is well accepted in the pediatric transplant community. Most centers will not perform solid organ transplants on underage siblings unless mandated to do so by the courts or as a last resort. “It is assumed that having a healthy sibling is enough of a benefit to outweigh the minor discomfort and small risk of a bone marrow transplant,” says Rebecca Pentz, PhD, professor of hematology and oncology in Research Ethics, Emory University. “However, there is little or no literature to support that theory.”

Adults who donated solid tumors to unrelated patients experienced increased self-esteem, pride and higher self-worth. There are varied opinions about the benefits to underage donors. The sibling donors may experience high self-esteem and improved relationships with the family. But, sibling donors whose transplants were unsuccessful experience guilt, shame and anger, Pentz added.

The current ethical justifications for sibling donation are the best interest of the donor, closeness to the family and obligation to the family. The current data to support any of these assumptions is sparse, at best.

Should Developmentally Impaired Children Receive Transplant Organs?
If a child is high functioning and can attend school should they be more likely to be listed for an organ transplant than a child who is profoundly developmentally impaired (with no mobility or measurable IQ)? “It is very common for hospitals to use developmental delay as a factor in making the decision about whether to list patients for transplant,” said David Magnus, PhD, associate professor of pediatrics and medicine, Stanford University. “A few U.S. transplant programs have admitted that they exclude any patient with a delay, regardless of the severity of their case”

Some centers argue that these patients would have poor outcomes. In fact, there is little evidence that the outcomes for these children are different than those of normal, healthy children. The ethical dilemma, says Magnus, is weighing the responsibility of scarce organ resources with the physician’s obligations to treat every patient fairly. He suggests that all children should be entitled to consideration for transplant.

Guest speakers included Dr. Norman Fost from the University of Wisconsin, Dr. Lainie Friedman Ross from the University of Chicago, Dr. Christine Harrison from the University of Toronto, Dr. Rebecca Pentz from Emory University, Dr John Paris from Boston College, Dr. David Magnus from Stanford University, and Dr. Douglas Diekema and Dr. Benjamin Wilfond from the University of Washington.

For more information on the conference, please visit Bioethics.

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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