Symposium Addresses Issues Surrounding Pediatric End-of-Life Care

DURHAM, N.C. -- A day-long symposium to address the issues that arise when a child dies will be presented May 29 by the Duke Institute on Care at the End of Life (ICEOL).

"Even before the Institute of Medicine issued its startling report on pediatric end-of-life issues last fall, our core faculty had selected this topic for the spring symposium," said Gwendolyn London, interim director of the Duke institute. "The symposium will draw together people with interests in medicine, nursing, social work, theology and other disciplines to look at the cultural-social aspects that the report illuminates."

The Institute of Medicine report, titled "When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families," says the trauma that family members face when a child dies is often made worse by an unprepared health care system.

"I've worked in pediatric end-of-life care for the past 10 years, and for most of that time I have felt like a lone ranger," said Bebe Guill, a director in the Brain Tumor Family Support Center at Duke University Medical Center. "The ICEOL is affording an opportunity to create a community of people who, like me, may have experienced frustration and loneliness in trying to improve care for children who are dying. I am more hopeful than ever that moving toward best care and eliminating worst care is an achievable goal."

The Duke symposium, "Suffer the Children," will run from 8:30 a.m. to 5 p.m. and is open to the public for a registration fee of $45. A brochure listing all speakers and a registration form are available online.

The Institute of Medicine report says, "At worst, families' encounters with the health care system will leave them with painful memories of their child's unnecessary suffering, bitter recollections of careless and wounding words, and lifelong regrets about their own choices." On the other hand, the report says, the best medical professionals "will exemplify 'medicine with a heart,' helping all involved to feel that they did everything they could to help, that preventable suffering was indeed prevented, and that the parents were good parents."

Many children who die are born with rarely seen medical conditions, which creates uncertainty in diagnosis and prognosis, the report says. Because local physicians often have little experience in rare medical conditions, children and their families are more likely to have to travel far from home for treatment, removing them from their usual sources of emotional support, disrupting parents' employment, and straining family relationships and finances. All of these factors create situations "laden with fear, anxiety, and depression" that add to the burdens on physicians and families as they try to make hard decisions.

Speakers at the symposium include:

-- Beth Westbrook, an advocate for pediatric hospice care who has raised more than $2 million for Katie's Fund, which is named for her daughter and dedicated to pediatric cancer research at Children's Hospital of Pittsburgh.

-- Charles Moore, an instructor of social ethics at Denver Seminary and a counselor to youths in the aftermath of the Columbine High School shootings in Littleton, Colo. Moore worked with Misty Bernall to re-tell her slain daughter's story in "She Said Yes, the Unlikely Martyrdom of Cassie Bernall."

-- Deborah Dokken, co-founder of Partners in Intensive Care and a founding member of the Parent Partners Group at the George Washington University Hospital. After she lost two infants and her son, Jeremy, was born prematurely, she became actively involved with pediatric palliative care issues.

-- Dr. Dan Tobin, director of the Life Institute/VA Healthcare Network of Upstate New York and the Center for Advanced Illness Coordinated Care, a group of non-profit education and training centers that integrate palliative care into mainstream medicine. He is director of the National Alliance for Children with Threatening Conditions.

In addition, Celebration Shop, a musical group dedicated to healing children of all ages, will perform. The group has received the Elisabeth Kubler-Ross Award for outstanding contribution to children's hospice care.

The event at the Bryan Center, on Duke's West Campus, is designed for physicians, nurses, physician assistants, palliative care specialists, hospice professionals, clergy, social workers and parents. Others involved in end-of-life care of children who may want to attend include grief counselors, psychologists, family counselors, teachers, and lay caregivers from faith communities.

The Duke institute was established to enhance the understanding of care at the end of life through a university-wide, interdisciplinary examination of care for the suffering and dying. Based at Duke Divinity School, the institute brings together scholars from Duke and partnering institutions to conduct research, educational initiatives and public outreach aimed at improving end-of-life care.

For questions about registration, call (919) 660-1765.

The report from the Institute of Medicine can be read for free online or purchased in book form at www.nap.edu/catalog/10390.html.