FOOTPRINTS

Community-based hospice services for terminally ill children and their families

Field of Work: End-of-Life Care

Problem Synopsis: During the 1980s and 1990s, Americans began to be concerned about the long period of suffering many people endured before their deaths. Many states passed laws to give people more say over how they die, allowing them to create living wills, durable powers of attorney and health care proxies. Hospice, which provides care aimed at ensuring the comfort and quality of life of terminally ill people, rather than at extending their lives, became widely recognized, and Medicare began to pay for hospice services.

Synopsis of the Work: Promoting Excellence in End-of-Life Care was a Robert Wood Johnson Foundation national program to identify, promote and institutionalize care practices that allow seriously ill people and their families to approach the end of life in physical, psychological, spiritual and emotional comfort. From October 1998 to April 2002, with $448,436 from this RWJF national program, staff at SSM Cardinal Glennon Children's Medical Center and the Saint Louis University School of Medicine established FOOTPRINTSSM to serve children who were terminally ill, or had illnesses that made it unlikely they would survive to adulthood, and their families.

Key Results

  • Footprints staff:

    • Helped 83 children and their families make decisions about managing their care, and recorded those decisions in advance care plans.
    • Identified a "continuity physician" to provide a link between hospital and community care and coordinated hospital and community services to ensure that the advance care plan was followed regardless of the site of care.
    • Created a curriculum to teach hospital staff and community providers about pediatric palliative comfort and how to address comfort—and psychosocial and spiritual needs.
    • Conducted focus groups with families and health care providers to ascertain their priorities and learn about service gaps as well as with families to develop assessment tools for quality of care, satisfaction with care and grief.
  • Project staff reported the following additional results:

    • In 1999, the year FOOTPRINTS was created, participating children were in the program for 53 days. In 2000, they participated for 86 days.
    • All the physicians and nurses responding to a satisfaction survey said they would refer another child to the program; more than 50 physicians referred families to FOOTPRINTS and 40 agreed to act as continuity providers.
    • Emergency Medical Services providers serving Cardinal Glennon Children's Medical Center changed practice from delivering emergency life-prolonging care to children in all circumstances to honoring advance care plans developed through the project.
    • Staff created or adapted and implemented 14 tools to measure quality of care, satisfaction with care, quality of life and quality of death.

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