Palliative Care Focus of Book
By Doug Boyd
Health care professionals treating terminally ill children now have a resource they can turn to for guidance.
Dr. Ronald M. Perkin, chairman of the Department of Pediatrics at the Brody School of Medicine at East Carolina University, along with Dr. James D. Swift of the University of Nevada and Julia Raper of Children’s Hospital of University Health Systems of Eastern Carolina, have written a book titled, “Primer on Pediatric Palliative Care.” The book was published in March by ECU’s University Printing and Graphics.
“Nobody expects their child to die, but unfortunately we have children who die,” Perkin said. “This book is to help health care professionals deal with children who will not survive to be adults.”
The 255-page book has six sections with titles such as “Ethical and Legal Issues in Pediatric Palliative Care,” “Intensive Symptom Management” and “Bereavement.”
End-of-life care for adults has received growing attention in recent years, but end-of-life care for children has remained relatively undiscussed. One reason is, as Perkin mentioned above, that children aren’t expected to be terminally ill or mortally injured. Another reason is that children are not old enough to have legally binding advance directives, wills or other items available to adults.
Perkin said children facing death often understand what’s happening and should be able to refuse treatment if they desire.
“A lot of the children that have chronic illnesses and aren’t going to survive mature at a faster rate,” Perkin said. “Age shouldn’t make a difference.”
Perkin said sometimes children are more accepting of their coming death than parents. He told of a terminally ill child who denied he was in pain because his mother thought pain meant he was getting worse. The child eventually died.
The book is a valuable reference for health care professionals as well as those who don’t care for patients but have an interest in the subject, according to Dr. George Ho, an ECU rheumatologist, professor of medicine and advocate of palliative care.
“It’s a wonderful resource, it’s a wonderful primer,” said Ho, who’s pledged $63,000 to establish an endowed professorship at ECU aimed at helping medical students and other health professionals better meet the needs of terminally ill patients.
“The emotional reaction to a dying child is much different than our reaction to someone who’s dying after a long, productive life. Because they are different, they require different skills for people to cope with them.”
The book stresses the importance of thoughtful, careful and ethical communication with parents. Some parents are more accepting of their child’s impending death than others, Perkin said. Physicians and other care-givers need to know how to explain that withholding care or administering a medication to ease pain might also hasten death, but it doesn’t mean they are taking the patient’s life.
“God doesn’t need a ventilator to create a miracle,” Perkin said.
While hospice is available for adults, it requires proof that patients will almost certainly die within six months. Perkin said predicting when terminally ill children will die is harder. He said doctors at Children’s Hospital strive to discharge dying pediatric patients to their homes when possible. But for patients who need hospital care right up to the end, Children’s Hospital leaders are working on a “butterfly room,” actually a suite where families, friends and even pets can visit during a child’s last days or hours. That project is supported by a $75,000 pledge from Garner homebuilder Ashley Turner.
“This area allows you to break all the rules” of a normal inpatient unit, Perkin said.
The book also addresses the importance of sibling support. Perkin said a dying child and his or her parents often get the bulk of the attention from care-givers and others while brothers and sisters are sometimes forgotten.
Regarding care-givers, Perkin said studies have shown health care professionals who care for dying children sometimes suffer from post-traumatic stress syndrome in addition to burnout and compassion fatigue, all of which can lead to absenteeism, poor job performance, hostility toward co-workers, turnover and other problems. At Children’s Hospital, staff members and physicians have cared for enough terminally ill children that they are aware not all can be saved, Perkin said.
Publishing costs for 700 books were paid for with a $12,000 grant from the Children’s Miracle Network. The book is free, and copies are available by contacting Perkin at 744-2540 or firstname.lastname@example.org.
This page originally appeared in the July 15, 2005 issue of Pieces of Eight. Complete issue is archived at http://www.ecu.edu/news/poe/archives.cfm.