Systems and Standards

Improving Home-Based Pediatric Palliative Care for Children

Organization

Children's Hospital Los Angeles

Primary Contact

Debra Lotstein

Grant Amount

$158,030 for 18 months

Date Awarded

June 2019

Purpose

Pediatric palliative care is often misunderstood as end-of-life care. In fact, it is a set of mostly hospital-based services to ease suffering and promote well-being at any stage of serious illness. There are only eight hospital-based pediatric palliative care programs in California, and a troubling shortage of providers. This grant to Children’s Hospital of Los Angeles will support creation of a protocol for the implementation and evaluation of a model for home-based pediatric palliative care that would be provided via telehealth technology. A comprehensive description of the model and its key components, as well as implementation resources and evaluation tools needed to pilot test the model, will be developed.

Outcome

A model for home-based pediatric palliative care, provided using telehealth technology, was developed using an intensive design-thinking process. The process involved a broad range of pediatric palliative care stakeholders, including families, clinicians, home health agencies, and payers. An implementation guide and evaluation tools for the model have been developed. The model is currently being piloted through additional grant funding from another private foundation. As part of this project, a scoping literature review of the use of telemedicine in pediatric palliative care was conducted, and the findings were published in the Journal of Pain and Symptom Management.

Related Publication