Debra Lotstein

Discipline: Physician

Funding awarded to: Children's Hospital Los Angeles

Maximizing the Use of Home-Based Care for Children with Serious Illness

The primary aim of my project is to maximize access to home-based hospice and palliative care programs for children with serious illness. The project has two goals: 1) To understand key differences among children cared for by the Division of Comfort and Palliative Care at Children’s Hospital Los Angeles (CHLA) according to the type of home-based program the child was referred to, if any. 2) To use quality improvement (QI) methods to increase the appropriateness and efficiency of the referral process to home-based programs by palliative and non-palliative care providers at CHLA. Activities include a retrospective chart review to compare differences in patient characteristics and health care utilization by referral category. In addition, the project will bring together a quality improvement team who will collaborate to improve the home-based care referral process and develop a clinical decision support tool to be used by both palliative and non-palliative care providers. Lessons learned from this project will be generalizable to other children’s hospitals in California and beyond. This project could also inform future population-based research efforts to better understand which children can benefit most from the home-based hospice and palliative care programs.

“Throughout my combined residency in internal medicine and pediatrics, I was drawn to caring for the sickest children with the most complex conditions, and was struck by the differences in medical care for children versus adults. On the adult side of the hospital, we had a palliative care service, which was my favorite rotation of residency. During this rotation, we would enter rooms filled with distraught patients and their families, and leave the rooms with patients and family members experiencing a sense of calm and relief. We had developed plans for symptom management or for getting patients home, or we had simply sat with a grieving husband at the bedside of his dying wife. I also witnessed how the palliative team maintained focus on the patient’s goals when medical decisions needed to be made. This type of personalized care was often missing for critically ill children when they had exhausted all treatment options and were nearing death. I made it my personal mission to improve the holistic care that providers give to these children and to reduce the pain and suffering that children and families experience during times of extraordinary illness.”