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.”

About Seattle Children’s

Seattle Children’s Hospital, Foundation and Research Institute together deliver superior patient care, advance new discoveries and treatments through pediatric research, and raise funds to create better futures for patients. Consistently ranked as one of the top 10 children’s hospitals in the country by U.S. News & World Report, Seattle Children’s Hospital specializes in meeting the unique physical, emotional and developmental needs of children from infancy through young adulthood. Through the collaboration of physicians in nearly 60 pediatric subspecialties, Seattle Children’s Hospital provides inpatient, outpatient, diagnostic, surgical, rehabilitative, behavioral, and emergency and outreach services to families from around the world.

Located in downtown Seattle’s biotech corridor, Seattle Children’s Research Institute is pushing the boundaries of medical research to find cures for pediatric diseases and improve outcomes for children all over the world. Internationally recognized investigators and staff at the research institute are advancing new discoveries in cancer, genetics, immunology, pathology, infectious disease, injury prevention, bioethics and much more.

Seattle Children’s Hospital and Research Foundation and Seattle Children’s Hospital Guild Association work together to gather community support and raise funds for uncompensated care, clinical care and research. The foundation receives nearly 80,000 gifts each year, from lemonade stand proceeds to corporate sponsorships. Seattle Children’s Hospital Guild Association is the largest all-volunteer fundraising network for any hospital in the country, serving as the umbrella organization for 450 groups of people who turn an activity they love into a fundraiser. Support from the foundation and guild association makes it possible for Seattle Children’s care and research teams to improve the health and well-being of all kids.

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