Abstract
BackgroundTo help design population-based pediatric palliative care services, we sought to describe the hospital care received in the last year of life by children and young adults who died. We also determined the proportion with complex chronic conditions (CCCs) and tested whether the use of hospital services increased as the date of death drew nearer.MethodsFor all deaths occurring under 25 years of age from 1990 to 1996 in Washington State, USA, we linked death certificate information to hospital utilization records and analyzed the timing and duration of hospitalizations and the nature of hospital procedures during the year prior to death.ResultsOf the 8 893 deaths, 25 % had CCCs. Among infants with CCCs, 84 % were hospitalized at the time of death and 50 % had been mechanically ventilated during their terminal admission. Among the 458 CCC neonates dying under a week of age, 92% of all days of life were spent in the hospital; among the 172 CCC neonates dying during the second to fourth weeks of life, 85 % of all days of life were spent hospitalized; among the 286 CCC infants dying during the second to twelfth month of life, 41 % of all days of life were spent hospitalized. Among children and young adults with CCCs, 55 % were hospitalized at the time of death, and 19 % had been mechanically ventilated during their terminal admission. For these older patients, the median number of days spent in the hospital during the year preceding death was 18, yet less than a third of this group was hospitalized at any point in time until the last week of their lives. The rate of hospital use increased as death drew near. For subjects who had received hospital care, 44 % had governmental insurance as the source of primary payment.ConclusionsInfants who died spent a substantial proportion of their lives in hospitals, whereas children and adolescents who died from CCCs predominantly lived outside of the hospital during the last year of life. To serve these patients, pediatric palliative and end-of-life care will have to be provided in an integrated, coordinated manner both in hospitals and home communities.
Highlights
To help design population-based pediatric palliative care services, we sought to describe the hospital care received in the last year of life by children and young adults who died
Data sources and linkage The Washington State Department of Health assembled the longitudinal Death and Illness History Database (DIHD), which comprises Washington State hospital inpatient discharge records linked to death certificate records for all people who died in Washington State from 1987 to 1996
Our match of death certificates with hospital discharge records identified 8 893 persons less than 25 years of age who died in Washington State between 1 January 1990 and 31 December 1996 (Table 1)
Summary
To help design population-based pediatric palliative care services, we sought to describe the hospital care received in the last year of life by children and young adults who died. The need to develop programs and reorganize the health care system were key themes in the Institute of Medicine's report, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, which asserted that "better care is possible but current methods of organizing and financing palliative, end-of-life, and bereavement care complicate the provision and coordination of services to help children and families ..." [2].
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