Outpatient pediatric palliative medicine: Complex lives, comprehensive services

Abstract

Objectives * Identify the diagnoses and death rate found in an outpatient pediatric palliative care clinic. * Describe the technology and community supports used by children with medical complexity and incurable illness. Original Research Background. Pediatric palliative services nationwide enroll children with life-limiting, but not acutely life threatening chronic illness. Children receiving inpatient palliative services, the most prevalent service delivery model, have a survival rate of nearly 75% at one year. In response to the long survival rate of pediatric palliative care patients and the need for outpatient palliative services, University Health System (UHS) developed a medical home clinic that provides integrated palliative and primary care for children with medical complexity or incurable illness. Research Objectives. To discuss the demographics and characteristics of a comprehensive outpatient pediatric palliative care clinic. Methods. A retrospective chart review was performed for all patients seen in the UHS Comprehensive Care Clinic (UHS CCC) between September 2013 and February 2015. The main endpoints are predominant diagnoses categories, technology supports, community supports and death rate. Results. In a 1.5 year period, the UHS CCC performed 2338 visits for 359 enrolled children, which averages out to 4.3 visits per patient per year. Sixty-six percent used a gastrostomy for nutrition, 25% had tracheostomy, 30.3% required ventilator support, and 56.9% received home health nursing. The death rate for this clinic population is 4.3 deaths per 100 patients per year. 4.8% were enrolled in concurrent hospice at some point over the study period. The breakdown of diagnoses is: 41.5% neuromuscular, 33.5% congenital, 5.9% cardiovascular, 5.3% oncologic, 4.3% gastrointestinal, 1.6% respiratory, and 8% other. Conclusion. This demographic study describes the high complexity of outpatients receiving care in an outpatient pediatric palliative care clinic. The outpatient pediatric palliative population is dependent on both technology and community professionals. The death rate requires supporting patients at end of life. Implications for Research, Policy, and Practice. Caring for palliative care children in the outpatient setting requires not only expertise in endof- life care, but also in management of complex chronic conditions and primary care needs.