End of life care for terminally ill children differs significantly from therapies designed for adults nearing death, said a palliative care physician and bioethicist this week at the University of Chicago’s MacLean Center for Clinical Medical Ethics. Each year in the U.S., thousands of seriously ill children continue with curative therapies while enrolled in hospice or palliative medicine programs, even when cure is unlikely.

“The pattern of death is pretty different from adult patients,” said Dr. Joel Frader, medical director of the Bridges Palliative Care Program at Lurie Children’s Hospital. “There is a very low density of dying children, even in places like Chicago. As a result, there are very few expert pediatric palliative care providers.”

Palliative medicine is designed to alleviate symptoms of disease and curative treatments.

Out of the nearly three million U.S. deaths each year, only 55 thousand involve individuals under 18. More than 50 percent of child deaths are a result of catastrophic illness or rapid trauma, such as congenital abnormalities, homicides and accidents. Most non-acute deaths that require prolonged care involve complications associated with cancer or neuromuscular diseases.

Unlike adults, most terminally ill children have healthy cardiovascular systems and lungs until their final moments. Clinicians can offer pediatric patients simpler treatments, such as blood platelets or nutritional supplements, while still ensuring good quality of life until the final days or hours.

It is not unusual, Frader said, to care for a child “who is actively playing and happy until the last couple of days of his or her life. That’s pretty different from what it looks like in adult medicine.”

However, it is also much more difficult to predict a child’s life-expectancy and enroll him or her in one of the nation’s few pediatric palliative care or hospice programs.

“A lot of what we do is technically more difficult, or at the very least, unfamiliar to people who care for dying adult patients,” he added. “Medical directors in hospices who are geriatricians or internists or oncologists really don’t want anything to do with caring for children, even if their organization is the only one in the limited geographic area that provides in-home end of life services. It presents serious barriers, and our team spends an awful lot of time getting hospices to accept the care of a patient who lives outside of Chicago.”

Hospice care is designed to help comfort terminally ill patients in their last months of life. The goal is not cure, but pain and symptom management.

The Medicare Hospice Benefit provided to adults with a life expectancy of six months or less requires that patients stop receiving curative treatments, such as chemotherapy, blood transfusions and radiation. But federal law mandates that terminally ill children receive “concurrent care” consisting of both comfort and curative treatments. Pediatric programs are far less likely to be reimbursed.

While all palliative and hospice care programs are interdisciplinary, pediatric care typically involves music, art and animals to relax patients.

But many clinicians face depression, because they often provide care and emotional support to parents, siblings and even classmates. It can be frustrating to care for teens unable to make their own decisions, Frader offered, and difficult helping parents or guardians explain disease to young children.

“The emotional toll represents a psychological burden on the staff, and it’s not easy stuff to do,” he added. “There is a high turnover rate.”