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Kelly Nicole Michelson, MD, MPH; Tracy Koogler, MD; Christine Sullivan, MBA, MS; María del Pilar Ortega, MD; Emily Hall, MA; Joel Frader, MD, MA

Arch Pediatr Adolesc Med. 2009;163(11):986-992.

Objective  To broaden existing knowledge of pediatric end-of-life decision making by exploring factors described by parents of patients in the pediatric intensive care unit (PICU) as important/influential if they were to consider withdrawing life-sustaining therapies.

Design  Quantitative and qualitative analysis of semi-structured one-on-one interviews.

Setting  The PICUs at 2 tertiary care hospitals.

Participants  English- or Spanish-speaking parents who were older than 17 years and whose child was admitted to the PICU for more than 24 hours to up to 1 week.

Intervention  Semi-structured one-on-one interviews.

Results  Forty of 70 parents (57%) interviewed said they could imagine a situation in which they would consider withdrawing life-sustaining therapies. When asked if specific factors might influence their decision making, 64% of parents said they would consider withdrawing life-sustaining therapies if their child were suffering; 51% would make such a decision based on quality-of-life considerations; 43% acknowledged the influence of physician-estimated prognosis in their decision; and 7% said financial burden would affect their consideration. Qualitative analysis of their subsequent comments identified 9 factors influential to parents when considering withdrawing life-sustaining therapies: quality of life, suffering, ineffective treatments, faith, time, financial considerations, general rejection of withdrawing life-sustaining therapies, mistrust/doubt toward physicians, and reliance on self/intuition.

Conclusion  Parents describe a broad range of views regarding possible consideration of withdrawing life-sustaining therapies for their children and what factors might influence such a decision.

Author Affiliations: The Buehler Center on Aging, Health & Society, Northwestern University (Dr Michelson); Divisions of Critical Care Medicine (Dr Michelson) and General Academic Medicine (Dr Frader), Children's Memorial Hospital; Department of Pediatrics (Drs Michelson and Frader) and Program in Medical Humanities and Bioethics (Dr Frader), Feinberg School of Medicine, Northwestern University; Department of Pediatrics and Division of Pediatric Critical Care Medicine, University of Chicago Comer Children's Hospital (Dr Koogler); Children's Memorial Research Center, Biostatistical Core (Ms Sullivan); and Emergency Medicine, University of Chicago Medical Center (Dr Ortega), Chicago, Illinois; and College of Physicians & Surgeons, Columbia University, New York, New York (Ms Hall).

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