Retrospective Pediatric Telepalliative Care Experience

Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care, patient/family satisfaction with telepalliative care, and patient/family perspectives. Design: Retrospective electronic medical record chart review (2016-2020) of telepalliative patients at RCH (San Diego, USA), including satisfaction surveys. Documented quotes from telepalliative care consultations were analyzed thematically. Results: Fifty-six patients were seen through 181 telepalliative visits. Demographics: Forty-three percent were female and 32% were Hispanic/Latino. Ages ranged from 3 months to 25 years. Average Palliative Performance Scale was 47%. Seventy-nine percent used gastrostomy tubes for nutrition, but only 29% used home ventilation. Eighty-two percent completed a Physician Order for Life-Sustaining Treatment. Goals for 84% of patients were for life prolongation and attempt resuscitation. Visits averaged 86 minutes. Twenty-five surveys were returned: 92% felt very satisfied and 96% said the video visit was the same, better, or much better than an in-person visit. Sixty-four percent said the video visit was more convenient and 68% felt the video visit was safer. Identified themes from telepalliative consultations included advocacy for their child, challenges surrounding care for children with complex medical needs, medical team communication, caregiver support, facing uncertainty, and decision making. Conclusions and Implications: Pediatric patients receiving telepalliative care varied in demographics, functional status, and goals of care. Telepalliative care can provide good quality of care and patient satisfaction. In a telepalliative setting, parents were able to communicate challenging aspects of care including navigating uncertainty, finding support, and decision making.