Palliative Care Research & Program Development
The Pediatric Palliative Care portion of our program, also known as the Children's Comfort Care Program, was established in 2008 though the generous support of a grant from the UniHealth Foundation (Principal Investigator: Elana Evan, PhD). The program began under the direction of Dr. Evan through the efforts of a pediatric departmental-wide task force of physicians, nurses, mental health practitioners and hospital staff along with a bereaved parent advisory board in order to provide awareness, education, and ultimately inpatient clinical services for treating pain and other symptoms children with life-threatening illnesses experience. The development of the program also included the creation of a bereavement program which consisted of establishing an annual family memorial service, bereavement follow-up and with the recruitment of our team social worker, the initiation of bi-monthly support groups.
- Elana Evan, PhD - Director
- Lonnie Zeltzer, MD
Since this time, the pediatric palliative care program has merged with our chronic pain program and offers both inpatient clinical consultation and outpatient services. Expansion of the program includes the following:
- Use of Telemedicine and Telehealth Technology at Santa Monica-UCLA: Dr. Evan has received another grant from the UniHealth Foundation to expand our growing program to Santa Monica-UCLA Medical Center using telehealth technology. Pediatric patients needing pain and palliative care consultation will be able to access program services from both in-person clinician visits and telemedicine follow-up.
- Expansion of Clinical Services to Home: Dr. Evan is working to also expand the current pediatric palliative care clinical program to patients in their homes. Often children with serious illnesses who are discharged from the hospital still require a comprehensive biopsychosocial approach to pain and symptom relief, but are too fragile or immobile to travel for outpatient clinic visits.
- Bereavement Program Development: Dr. Evan, Dr. Lotstein, and Gina Kornfeind, MS, MSW are working on the production of a "Bereavement Bundle" that will offer coping resources to both families and clinical staff after the death of a pediatric patient. This includes the development of a HIPAA compliant bereavement database to be able to track and inform clinical staff on the death of their patients, regional support group resources for patients' families, and tangible comforting items that can be offered to families upon the passing of their child.
- Giving Back: Continuing efforts are being made toward the sustainability of the program through grant-writing, generous gifts from within the hospital, donations from our community and from individual benefactors.
- Assessment and Understanding Symptoms of Children with Serious Illnesses: A descriptive study aimed at understanding what symptoms children with various serious illnesses experience and how their parents understand and experience their child's illness. (Funded by the Elizabeth Glaser Pediatric Research Network, PI: L. Zeltzer)
- Communication Intervention in Pediatric Palliative Care: Development and piloting of an intervention aimed at improving symptom communication between children with advanced cancer and their parents (Funded by the American Cancer Society, PI: E. Evan)
- Communication Intervention in Pediatric Palliative Care: Piloting of an intervention aimed at improving symptom communication between children with advanced diseases (e.g. cardiac, GI, and pulmonary) and their parents (Funded by the National Palliative Care Research Center, PI: E. Evan)
- Development and Piloting a Model Pediatric Palliative Care Clinical Service: Pilot the implementation of a pediatric palliative care clinical program and evaluate their effectiveness in changes in palliative care practices (Funded by the UniHealth Foundation, PI: E. Evan)
- Pilot Study of a Brief Mindfulness Meditation Training for Parents: Pilot the feasibility of asking parents of hospitalized children to practice brief mindfulness meditations, and assess whether this can reduce their stress level (Funded by the Oppenheimer Foundation, PI: D. Lotstein)