NHPCO’s Standards for Pediatric Palliative and Hospice Care Advancing Care for America’s Children

Despite amazing progress in medicine and technology, the unfortunate reality remains that children die. Approximately 53,000 children die each year in the United States and at least 400,000 more live every day with chronic, life-threatening conditions. While these numbers pale in comparison to the number of dying adults, the impact on families and on society is immeasurable. The Pediatric Services Survey which NHPCO conducted in 2007 reveals that a majority of responding agencies serve pediatric patients, but only a minority has formal pediatric hospice and palliative care programs with specially-trained staff. Many providers indicate willingness to start or expand pediatric services but lack education, tools, resources and performance improvement methods to create and sustain high-quality programming. In response to this need, NHPCO in conjunction with the Children’s Project on Palliative/Hospice Services developed its first national pediatric standards—the “Standards of Practice for Pediatric Hospice and Palliative Care Programs”

• NHPCO members may download the pediatric standards in PDF, at no charge.

• NHPCO members that would like a printed copy and all others may purchase the standards from NHPCO’s Marketplace online or by calling the Marketplace at 1-800-646-6460.

Pediatric Facts & Figures

To understand the importance of pediatric palliative and hospice care, NHPCO and ChiPPS released a document with facts and figures on pediatric end-of-life care. Download “Facts & Figures on Pediatric Palliative Care and Hospice.” (PDF)

Developing the Pediatric Standards

In 2006, NHPCO reorganized the Standards of Practice for Hospice Programs around the “10 Components of Quality in Hospice Care,” which serve as the framework for the NHPCO quality program, Quality Partners:

1. Patient and Family-Centered Care
2. Ethical Behavior and Consumer Rights
3. Clinical Excellence and Safety
4. Inclusion and Access
5. Organizational Excellence
6. Workforce Excellence
7. Standards
8. Compliance with Laws and Regulations
9. Stewardship and Accountability
10. Performance Measurement

Implementing the Standards

The Pediatric Standards are a supplement to the NHPCO Standards of Practice for Hospice Programs and are designed to supplement the existing Standards and set clinical and organizational precedence for hospice and palliative care programs providing care to infants, children, adolescents, and their families in the home, hospital, and long-term care and respite facilities.

Additional Resources:

The following resources are available for purchase from NHPCO’s Marketplace (www.nhpco.org/marketplace) at member-discounted rates:  

Education and Training Curriculum for Pediatric Palliative Care (Item 820285)

Compendium of Pediatric Palliative Care (Item 810030)

Caring for Kids: How to Develop a Home-Based Support Program (Item 820577)

Family Education Brochures (available in English and Spanish):

When Your Child is in Pain (Item 821104)

Talking with Your Child about His/Her Illness (Item 821106)

Talking to Your Child’s Doctor (Item 821108)

When a Child Dies: A Guide for Family and Friends (Item 821110)

Helping Children Cope with the Death of a Loved One (Item 820974)