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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:


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.


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 Resources

Pediatric palliative care is an underappreciated resource that can provide an additional layer of support for children with medical complexity and their families. Often misunderstood as end-of-life care, pediatric palliative care aims to improve quality of life for children and families. A shift in policy in California has expanded eligibility for pediatric palliative care, but there is lack of clarity on how the new services should be implemented. One way to improve access to pediatric palliative care is using telemedicine. This brief aims to identify the current state of pediatric palliative care in California and provides recommendations to improve implementation of pediatric palliative care and develop new models that better integrate telemedicine into care delivery.