Although it commonly happens late in the course of the disease, pediatric palliative care (PPC) improves the quality of life and end-of-life outcomes for children with cancer. The Supportive Care Clinic (SCC) opened its doors in 2017 to provide access to outpatient PPC. To outline the first 4 years (2017–2021) of a pediatric oncology-focused academic, consultative SCC.
Calculations were made for descriptive data (demographic, illness, treatment, visit, and end-of-life) and changes with time.
A total of 1,143 clinic visits (median 4, IQR 2,6), comprising 248 consultations and 895 follow-up visits, were made by 248 patients throughout the first 4 years at SCC (51.6% of whom were men, 58.1% White, 35.5% Black, and 13.7% Hispanic/Latino). From year 1 to 4, the number of clinic visits virtually tripled. Leukemia/lymphoma (17.3%), solid tumors (37.5%), and central nervous system tumors (41.9%) were the most common primary diagnosis. For most referred patients, SCC (70.6%) was the initial PPC site of contact. Among the 136 patients who passed away (54.8%), 77.9% had physician orders for life-sustaining treatment or a do-not-resuscitate order, and 72.8% got hospice care. About 89.3% of those died at their preferred place (n=112) when known. Over the course of four years, the interval from SCC consultation to death grew from 74 to 226 days (P<0.0001). Between years 1 and 4, the percentage of SCC consultations that took place more than 90 days after death rose from 39.1% to 85.0%.
Embedded SCC clinics can be productive, develop consistently, provide better end-of-life treatment for children with cancer, and improve referrals and PPC scheduling. In addition, SCC outpatient services should be available at large pediatric cancer centers.