Should a terminally ill 10-year-old have a say in determining her end-of-life care? Can a teenager make an informed consent to treatment? Questions of this type will be the mainstay of the Center for Pediatric Bioethics, the nation' first center for bioethics solely dedicated to pediatrics, which will be located at Children's Hospital and Regional Medical Center in Seattle. A $340,000 federal appropriation has been secured, and Children's Hospital has dedicated $1 million in start-up funding for the center.
'The center is integral to Children's mission to foster a spirit of inquiry aimed at preventing illness, eliminating disease, and reducing hospitalization and its impact on children and families,' according to Treuman Katz, president and CEO of Children's. 'By addressing the complex ethical issues that affect patients, families, health care institutions, and research involving children, the center will promote the highest standards of medical ethics and protections of patient rights in pediatric research and health care.'
The center will focus on four primary areas of pediatric bioethics:
* researching pediatric bioethics;
* educating medical students, health care professionals, and the public;
* providing a resource for families and health care professionals facing ethical dilemmas in clinical care;
* serving as an advocate for children who are receiving care and participating in research.
First of its kind in the nation
'The Center for Pediatric Bioethics will be the first of its kind in the nation, and it will provide a model for the study of policies, practices, and standards in ethical issues in pediatric research and health care that can be applied nationally and internationally,' according to Norman Fost, MD, MPH, director of the Program in Bioethics at the University of Wisconsin. 'This center has the potential to dramatically increase our understanding of ethical issues in the way health care and research for children is conducted.'
The study of pediatric bioethics is particularly important because it requires more than simply adapting the concepts applied to adult health care. Delivering health care to children and the involvement of children in research raises different questions.
For example, the extent in which children can participate in the decision making for their health care varies with each child and each situation. The relationship and communication that occur between a parent, health care provider or researcher, and a child are critical in assuring that the best interests of the child are served.
'Building on the strengths of one of the premier children's hospitals in the nation, the center will explore key issues faced by health care professionals, researchers, and parents, and will help create an environment that supports families in making informed choices about research participation and the use of innovative treatments,' says Wylie Burke, MD, PhD, professor and chair of the department of medical history and ethics at the University of Washington.
The center's first undertaking will be to encourage collaboration among national experts in pediatric bioethics by hosting the first annual Conference on Pediatric Bioethics in July. The first of its kind in the United States, the conference will be a forum for institutions, researchers, and physicians to discuss the relationship between pediatric research, health care, and the pharmaceutical industry.
A national resource
'We hope the center will become a national resource for physicians, researchers, policy makers, parents, and patients,' says F. Bruder Stapleton, MD, pediatrician-in-chief at Children's and Chairman of the Department of Pediatrics at the University of Washington School of Medicine. 'We have initiated the recruitment of a world-class pediatrician-bioethicist to direct the center and serve as chief of the newly created Division of Bioethics in the Department of Pediatrics.' Doug Diekema, MD, MPH, a respected bioethicist, will serve as interim director, according to Stapleton.
Bioethical challenges the center hopes to tackle include the involvement of children in research; quality of life for children with terminal illness; end-of-life decision-making; and religious considerations in health care decisions for children.
Best interest of the child
At the center, experts will assist health care professionals and families with difficult decisions by looking for ways they can work together to determine what is in the best interest of the child. Pediatric bioethics also helps children to participate in their own medical decisions, which can include determining if innovative therapies or participation in research studies is appropriate.
In addition to faculty bioethicists, the center will be staffed with pediatric-trained patient advocates who will work directly with patients and families to ensure appropriate safeguards and to facilitate and enhance communication with medical and research staff.
* F. Bruder Stapleton, MD, Pediatrician-in-Chief, Children's Hospital and Regional Medical Center, 4800 Sand Point Way N.E., Seattle, WA 98105. Phone: (206) 987-2000.