Chronic Disease / Pain Management

Working in the pediatric intensive care units (PICUs) of six geographically and demographically diverse children´s hospitals, this study will examine end-of-life care through medical records and interviews with key stakeholders—the child´s parents, the child´s primary nurse, the nurse who was present at the bedside at the child´s death, the attending intensivist who directed the child´s care, and a clinician besides the physicians and the nurses who provided psychosocial support to the family (e.g., social worker, psychologist, child life specialist, or chaplain).

The Initiative for Pediatric Palliative Care (IPPC) is an educational and a quality improvement effort, aimed at enhancing family-centered care for children living with life-threatening conditions. IPPC’s comprehensive, interdisciplinary curriculum addresses knowledge, attitudes and skills that health care professionals need in order to better serve children and families.

Decisions Near the End of Life was a national initiative to improve terminal and palliative care in the United States by equipping health care institutions to address ethical and legal misconceptions that stand in the way of better care for patients and families. At the time the program ended, there were 225 hospitals and nursing homes in 32 states participating in it. EDC staff directly trained more than 1000 physicians, nurses, social workers, and pastoral counselors who, in turn, trained approximately 40,000 colleagues.

PainLink was a virtual community of health professionals working in institutions committed to alleviating pain. An initiative of Education Development Center, Inc., PainLink was established in 1995 with funding from The Mayday Fund of New York City, which funded PainLink through 1999. From 1995 through 2001, EDC’s PainLink staff worked with staff in over 60 hospitals and nursing homes.