Study Finds Chronically-Ill Children Increasingly Die at Home

Seattle, WA - Children who die with underlying chronic health conditions in Washington state increasingly do so at home.

Findings published in April issue of Pediatrics.

Seattle, WA - Children who die with underlying chronic health conditions in Washington state increasingly do so at home. While most deaths under a year of age still occur in hospitals, between 1980 and 1998 the percentage of deaths between 1 and 24 years of age that occurred at home doubled, from 21% to 43%. These findings, by Children’s Hospital attending physicians Chris Feudtner, MD, PhD, MPH, Dimitri Christakis, MD, MPH, and colleague Maria J. Silveria, MD, MPH, were recently published in the journal, Pediatrics.

“Our goal in caring for children or adolescents whose medical condition proves to be so serious that death becomes inevitable should be to maximize the quality of their remaining lives, and to support their families as best we can,” says Dr. Feudtner. “Our study underscores the fact that, whether planned or not, children with serious chronic conditions increasingly are dying at home. Home is therefore where we need to care for them. To do this, our health care system must enhance its capacity to provide community-based supportive services in the home.”

Until this study, little was known about the locations where children with chronic health conditions die or what attributes influence the site of death. Dr. Feudtner conducted a retrospective study of all deaths from birth to 24 years of age in Washington state from 1980 to 1998. In addition to the location of death, he also found that a rising proportion of childhood deaths are attributable to complex chronic conditions.

Several factors appear to have influenced whether a child dies in the home. Children who had lived in more affluent neighborhoods were more likely to die at home. Deaths as a result of congenital, genetic, neuromuscular, metabolic conditions, leukemia and other types of cancer were all more likely to have occurred at home. Finally, depending upon where they lived in the state, children had different chances of dying at home.

Dr. Feudtner believes these research findings can help guide the growing movement to improve pediatric palliative and end-of-life care. “Even as we celebrate the miraculous advances that medical technology continues to give us, we must remain dedicated to the care of children who are dying. Both in hospitals and homes, providing better pediatric end-of-life care will take time, money and creativity, but I can hardly find a more important undertaking.”

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