A Commitment to Making the Emerging Field of Pediatric Palliative Care the Very Best It Can Be
Chris Feudtner, MD, PhD, MPH, is a pediatrician, epidemiologist, historian, and ethicist at The Children’s Hospital of Philadelphia (CHOP) and professor of pediatrics at the University of Pennsylvania. He is an alumnus of the Robert Wood Johnson Foundation Clinical Scholars program.
Living in a situation beyond almost-unbearable imagination: This is the reality that children with life-threatening conditions and their parents confront, and that the rapidly emerging field of pediatric palliative care seeks to address with compassionate and specialized medical and psychosocial expertise.1
A bit of background: just over half of the 45,000 children who die in the United States each year are infants, who often die within hours of their birth. Others die after traumatic injuries, usually quite suddenly. And a substantial proportion of the children die after a prolonged illness trajectory, due to a wide range of chronic conditions, ranging from cancer to congenital anomalies to neurodegenerative diseases. Most of these children spend days or weeks in hospitals, with frequent hospitalizations, and with the likelihood of hospitalization going up as the condition worsens.
To meet the needs of these patients and their families, many children’s hospitals in the United States have created dedicated pediatric palliative care teams. These interdisciplinary teams—composed of physicians, nurses, social workers, child life and art therapists, chaplains, and other specialists—pursue three core tasks on behalf of these patients. First, they manage pain and other symptoms, using both pharmacologic and complementary methods. Second, they support patients and parents in the often overwhelming process of receiving medical information and making treatment decisions. Third, they help coordinate care both across specialty disciplines within the health system, and across different sites of care, from the hospital setting to home or other residential sites, often in partnership with hospice or home nursing. All of this is done in coordination with the patient’s primary medical or surgical team2—palliative care adds and never subtracts.
Pediatric patients receiving palliative care range in age from literally before birth (via the care planning that occurs through fetal palliative care consultations, warranted for fetuses diagnosed prenatally with potentially lethal conditions) through infancy, childhood, and adolescence, and into young adulthood with conditions that had their onset during childhood. While many of these patients have cancer, the majority do not, instead having neurologic, genetic, or cardiac conditions, not to mention a wide variety of other illnesses and syndromes. Importantly, most patients who receive a pediatric palliative care consultation live much longer than might be expected: in a study we conducted of patients at six children’s hospitals, 70 percent were alive a year after their first palliative care consultation.3 This does not mean that these consultations were based on a mistaken prognosis; instead, this early introduction of palliative care into the overall mix of care for these patients is typically very appropriate, since all of these patients have serious illness, and palliative care helps patients (and their families) live better with serious illnesses.
To guide and spur the further development of the field, we recently conducted a study to provide a benchmark description of hospital-based pediatric palliative care teams.4 We surveyed the 226 children’s hospitals and related institutions in the United States, and 162 responded (72.7%). Of the responding hospitals, 69 percent reported having a team, most of which have been created in the past five years. The teams vary substantially in terms of how they are staffed, how many palliative care consults they perform, and what tasks or services they perform.
Overall, the teams appear to be significantly understaffed: most teams have not-quite a full-time nurse (either advanced practice or registered), less than a half-time amount of physician effort, and are only on-site in the hospital during weekdays (and nearly a quarter of these programs are not on-site even during weekdays). This stands in contrast to other teams that report two or more full time nursing staff, two or more full time equivalents of physician effort, and on site presence every day of the year.
Next steps to improve pediatric palliative care delivery within children’s hospitals will include defining best practices and ideal staffing for these interdisciplinary teams.
Every day that I go to work I wish that our palliative services were not needed, but go home knowing that, as long as there are serious illnesses that cause children to die, I and my colleagues on our pediatric palliative care team remain deeply committed to make this form of care the very best that it can possibly be.
1. American Academy of Pediatrics. Section on Hospice and Palliative Medicine and Committee on Hospital Care, Feudtner C, Friebert S, Jewell J. Pediatric palliative care and hospice care: committments, guidelines, and recommendations. Pediatrics. 2013;132(5):doi: 10.1542/peds.2013-2731. [back]
2. Feudtner C, Blinman TA. The pediatric surgeon and palliative care. Seminars in pediatric surgery. Aug 2013;22(3):154-160. [back]
3. Feudtner C, Kang TI, Hexem KR, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics. Jun 2011;127(6):1094-1101. [back]
4. Feudtner C, Womer J, Augustin R, et al. Pediatric palliative care programs in children's hospitals: a cross-sectional national survey. Pediatrics. Dec 2013;132(6):1063-1070. [back]