Dealing with systems that support the child and family during this time can be challenging. Insurance plans may force families to choose between potentially life-prolonging treatment and end-of-life services. The child’s pain and other symptoms must be adequately managed. Family support, respite and bereavement services may not be readily available.

Pediatric palliative care offers children and families solutions to these major challenges. Palliative care — embracing physical, emotional, social and spiritual elements — offers terminally ill children better quality of life and family support. The Institute of Medicine calls upon healthcare providers, policy makers, government and private insurers and others to improve palliative care services for children in the United States.

The National Association of Children’s Hospitals and Related Institutions (NACHRI) and its member children’s hospitals are active in several national initiatives aimed at improving palliative care for children. These efforts focus on better access to palliative care services, educating pediatric healthcare providers, research to guide quality palliative care services and better models for funding.

As a parent, you can play a part in these efforts. First, learn what palliative services are available in your community for children. Second, advocate for quality pediatric palliative care services with your local healthcare providers and insurance plans that fund these programs. Third, make elected officials know how important it is to you that families have access to quality pediatric palliative care services.