185390 Palliative Care Policy Implications for Children with Special Needs

Tuesday, October 28, 2008: 9:20 AM

William Livingood, PhD , Center for Health Equity & Quality Research & JPHsu COPH, Duval County Health Department & Univ of Florida & Georgia Southern Univ, Jacksonville, FL
Kimberly L. Pierce, MPH , Institute for Health, Policy, and Evaluation Research, Duval County Health Department, Jacksonville, FL
Thomas Bryant III, MSW , Institute for Health, Policy and Evaluation Research, Duval County Health Department, Jacksonville, FL
Kelly Komatz, MPH MD , Department of Pediatrics, University of Florida, Jacksonville, FL
Jeffrey Goldhagen, MD, MPH , Department of Pediatrics, University of Florida, Jacksonville, FL
Children with chronic debilitating diseases are living longer and challenging the development of policies that recognize the need for an increased focus on holistic models of health including improved quality of life and prevention of other health problems rather than the emphasis on tertiary care and life saving treatment. The policy challenges are particularly critical as hospice models of funding care are not appropriate because treatments do substantially extend life and life with these conditions is all that these children will know. The concept of palliative care, where the emphasis on quality of life accompanies treatment rather than replaces treatment, requires policies that support concurrent treatment funding mechanisms accompanied by quality of life support funding mechanisms.

Results of a pilot outcome evaluation of a pediatric palliative care program have important implications for policies that support funding for concurrent palliative care and treatment care. In 2001, Community PedsCare was initiated through various alliances of healthcare organizations throughout Northeast Florida to address the need for holistic care coordinated services for children with chronic illnesses. The primary approach of the Community PedsCare palliative care program is a multiple disciplinary approach with psychosocial interventions, child life specialist care, home health care, spiritual support, pain and symptom management and volunteer interventions that complement specialized medical care. Results showed decreases in hospital costs and utilization and improved quality of life for families with children with special health care needs. The results provide important insights for program and policy development as well as evaluation research design.

Learning Objectives:
1. Distinguish palliative care from hospice care 2. Describe approaches to measuring palliative care outcomes, 3. Discuss implications of palliative care evaluation results for program and policy development.

Keywords: Children With Special Needs, Outcomes Research

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: Principal Investigator for Evaluation Study
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.