SSM Cardinal Glennon Children's Hospital

Project Overview

Dying children and their families often wish to spend quality time together at home as the end of life nears, and doctors at Cardinal Glennon Children's Hospital facilitated these wishes through Project PATHS (Pediatric Approach To Hospice Support). At the same time they implemented a system of bereavement care for families who experience the sudden death of an infant or child. The Footprints program combined clinical care, research and education in its approach to caring for dying children and their families.

Prior to the onset of this project, nearly all children in the greater-St. Louis and southern Illinois region who had progressive, incurable illnesses spent the last days of life in an urban hospital. The situation was driven partly by families who insist on the highest quality technical care for their dying child and partly by the lack of a coordinated system of hospice care.

In collaboration with the Saint Louis University School of Medicine, Cardinal Glennon's program built and maintained a network of providers in this area to give dying children and their families the care they need, including physical, emotional and spiritual support, without requiring them to leave the familiarity of home.

Under the direction of Suzanne S. Toce, M.D., the staff of Glennon and St. Louis University School of Medicine supported local medical providers and hospice programs by conducting area-wide training programs. Through the development of a new palliative care specialty team at Cardinal Glennon, this project also offered 24-hour consultation to the region's health care providers.

• The program staff developed/adapted and implemented 14 tools (see below) to measure quality/satisfaction with care, quality of life and quality of death.
• The program contributed to the general knowledge about pediatric palliative care on a local and regional basis, having educated over 4,000 health care professionals, including physicians, nurses, psychologists, school counselors, school nurses, chaplains, and social workers.
• The Footprints program created a model of advanced care planning and care coordination for children at the end of life.

Tools

• Honoring the Sacred Journey
• Parent Booklet
• Professional Brochure
• Care Planning Process & Care Path Flow Chart
• Multi-Disciplinary Order Sheet / Advance Care Plan
• Conditional Triggers for Discussing Palliative Care in Pediatric Settings
• Modular Curriculum
• Anticipatory Post Death Interview / Sudden Post Death Interview
• Anticipatory Grief Scale
• Chart Review Cost Data Collection Form
• Quality Assurance Good Death Tool
• Satisfaction With Care Questionnaire
• The Texas Revised Inventory of Grief
• Home Health Care Needs Assessment
• Nurse Community Needs Assessment
• Physician Community Needs Assessment

Resources

• Bibliography (PDF 100 KB / 2 pages)
  Download Acrobat Reader
• The Journal of Palliative Medicine (December 2003: Volume 6, No. 6) features an article about this demonstration project titled "The FOOTPRINTSSM Model of Pediatric Palliative Care.”
• This demonstration project was featured at the 2003 NHPCO 5th Clinical Team Conference:
• Session 4: Advances in Pediatric Palliative Care: Using Clinical Assessment and Outcome Measures
• The SSM Cardinal Glennon Children's Hospital Footprints program was awarded a Citation of Honor as part of the 2003 Circle of Life Awards. The Circle of Life Award honors innovation in palliative and end-of-life care.

After the Grant

The Footprints program was incorporated into routine hospital operations at Cardinal Glennon and is funded under the hospital budget. The program was sustained with expanded staffing and additional venues and received a federal grant to export Footprints to five sites in Missouri.

Contact Information

Principal Investigator:
Suzanne S. Toce, M.D.
Professor of Pediatrics
SSM Cardinal Glennon Children's Hospital
1465 S. Grand Blvd.
St. Louis, MO 63104
Phone: 314.577.5642
Fax: 314.268.6410
Email: [email protected]

Web site: www.footprintsatglennon.org

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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families.