The diagnosis of terminal illness in a pediatric patient rouses potentially disabling emotions, not only in the child and the child's family, but also in the treating physician. Yet, these feelings often go untreated.
In the face of a devastating diagnosis, palliative care is intended to address the psychological, social, and spiritual issues that assail the patient and family (Pediatrics 106[2 pt. 2]:351-57, 2000). According to the American Academy of Pediatrics, standard medical care for children with a terminal illness must include palliative care.
Unfortunately, few physicians trained in pediatrics and pediatric subspecialties--including oncology--have received training in pediatric palliative care. In fact, few medical schools, residencies, or fellowship programs in the world offer this training. A handful of palliative care subspecialists, such as Dr. Bruce P. Himelstein, however, are beginning to train pediatricians across the country in the concepts of palliative care.
"It is a good idea to try to train people who are already out in the field doing the pediatric care," said Dr. Sarah Friebert, pediatric medical director for the Hospice of Western Reserve, Cleveland. It can allow the primary care provider to stay involved in the child's care.
Because general pediatricians see only two or three patients die over their lifetimes, they may not recognize that the leading causes of death in children have changed over time. According to the Annual Summary of Vital Statistics in the journal Pediatrics, a shift from infectious diseases to chronic diseases (such as cancer) and trauma as the primary causes of childhood mortality has taken place in the last several decades.
Dr. Javier Kane, who heads the pediatric palliative care program at Christus Santa Rosa Children's Hospital in San Antonio, credits technologic advances with allowing children who have chronic diseases to live longer. As a result, the number of children with chronic diseases is on the rise, and there is greater morbidity. "This [reality] demands increasing attention to palliative [care]," he said in an interview. "Children are suffering and we need to address this suffering." But there are several barriers to providing good palliative care for children.
One of the largest barriers is health care provider inexperience, which often leads to aggressive therapies that may not prolong life but may greatly increase suffering. "There are not very good prognostic criteria for children with many of these [life-threatening] disorders--some of which are very rare," said Dr. Himelstein, a pediatric oncologist and supportive care medical director in the oncology department at Children's Hospital of Philadelphia. The lack of criteria can lead to aggressive therapies that focus on the physical aspects of the disease at the expense of caring for pain and suffering.
Assessing only pain and suffering in children presents a problem, Dr. Friebert said. "Physicians or parents will often say, 'He's playing so he can't be in too much pain.' But children play when they have pain--especially when they realize there's nothing they can do about it."
Although the literature is beginning …