search text   Advanced Search

This Article Full Text Full Text (PDF) P3Rs: Submit a response Alert me when this article is cited Alert me when P3Rs are posted Alert me if a correction is posted Citation Map Services E-mail this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to My File Cabinet Download to citation manager Citing Articles Citing Articles via HighWire Citing Articles via CrossRef Citing Articles via Google Scholar Google Scholar Articles by Feudtner, C. Articles by Christakis, D. A. Search for Related Content PubMed PubMed Citation Articles by Feudtner, C. Articles by Christakis, D. A. Related Collections Miscellaneous

Where Do Children With Complex Chronic Conditions Die? Patterns in Washington State, 1980–1998

Chris Feudtner, MD, PhD, MPH^*,, Maria J. Silveira, MD, MPH^|| and Dimitri A. Christakis, MD, MPH^*,,

^* Child Health Institute, University of Washington, Seattle, Washington
Department of Pediatrics, University of Washington, Seattle, Washington
Department of Health Services, University of Washington, Seattle, Washington
^|| General Medicine, University of Michigan, Ann Arbor, Michigan

--> Objective. Little is known about factors that influence whether children with chronic conditions die at home. We sought to test whether deaths attributable to underlying complex chronic conditions (CCCs) were increasingly occurring at home and to determine what features were associated with home deaths.

Design. A retrospective case series was conducted of all deaths that occurred to children age 0 to 18 years in Washington state from 1980 to 1998 using death certificate data, augmented with 1990 US Census data regarding median household income by zip code in 1989, to determine the site of death.

Results. Of the 31 455 deaths identified in infants, children, and adults younger than 25 years, 52% occurred in the hospital, 17.2% occurred at home, 8.5% occurred in the emergency department or during transportation, 0.4% occurred in nursing homes, and 21.7% occurred at other sites. Among children who died as a result of some form of CCC (excluding injury, sudden infant death syndrome, and non-CCC medical conditions), the percentage of cases younger than 1 year who died at home rose slightly from 7.8% in 1980 to 11.6% in 1998, whereas the percentage of older children and young adults who had a CCC and died at home rose substantially from 21% in 1980 to 43% in 1998. Children who had lived in more affluent neighborhoods were more likely to have died at home. Using leukemia-related deaths as a benchmark, deaths as a result of congenital, genetic, neuromuscular, and metabolic conditions and other forms of cancer all were more likely to have occurred at home. Significant variation in the likelihood of home death, not explained by the individual attributes of the cases, also existed across the 39 counties in Washington state.

Conclusions. Children who die with underlying CCCs increasingly do so at home. Age at death, specific condition, local area affluence, and the location of home all influence the likelihood of home death. These findings warrant additional study, as they have implications for how we envision pediatric palliative care, hospice, and other supportive services for the future.

Key Words: location of death • chronic illness • palliative care • end of life care • medical geography

Abbreviations: CCC, complex chronic condition • ICD-9, International Classification of Diseases, Ninth Revision • AOR, adjusted odds ratio • CI, confidence interval

This article has been cited by other articles:

				H Siden, M Miller, L Straatman, L Omesi, T Tucker, and J. Collins A report on location of death in paediatric palliative care between home, hospice and hospital Palliative Medicine, October 1, 2008; 22(7): 831 - 834. [Abstract] [PDF]

				J. M. Linton and C. Feudtner What Accounts for Differences or Disparities in Pediatric Palliative and End-of-Life Care? A Systematic Review Focusing on Possible Multilevel Mechanisms Pediatrics, September 1, 2008; 122(3): 574 - 582. [Abstract] [Full Text] [PDF]

				P. N. Lanken, P. B. Terry, H. M. DeLisser, B. F. Fahy, J. Hansen-Flaschen, J. E. Heffner, M. Levy, R. A. Mularski, M. L. Osborne, T. J. Prendergast, et al. An Official American Thoracic Society Clinical Policy Statement: Palliative Care for Patients with Respiratory Diseases and Critical Illnesses Am. J. Respir. Crit. Care Med., April 15, 2008; 177(8): 912 - 927. [Full Text] [PDF]

				J. A. DePalma Evidence to Support Pediatric Palliative Care Home Health Care Management Practice, August 1, 2007; 19(5): 400 - 401. [PDF]

				C. Feudtner, J. A. Feinstein, M. Satchell, H. Zhao, and T. I. Kang Shifting Place of Death Among Children With Complex Chronic Conditions in the United States, 1989-2003 JAMA, June 27, 2007; 297(24): 2725 - 2732. [Abstract] [Full Text] [PDF]

				J. M. Carroll, G. Santucci, T. I. Kang, and C. Feudtner Partners in Pediatric Palliative Care: A Program to Enhance Collaboration Between Hospital and Community Palliative Care Services American Journal of Hospice and Palliative Medicine, June 1, 2007; 24(3): 191 - 195. [Abstract] [PDF]

				K. Widger, D. Davies, D. J. Drouin, L. Beaune, L. Daoust, R. P. Farran, N. Humbert, F. Nalewajek, M. Rattray, M. Rugg, et al. Pediatric Patients Receiving Palliative Care in Canada: Results of a Multicenter Review Arch Pediatr Adolesc Med, June 1, 2007; 161(6): 597 - 602. [Abstract] [Full Text] [PDF]

				P. Ramnarayan, F. Craig, A. Petros, and C. Pierce Characteristics of deaths occurring in hospitalised children: changing trends J. Med. Ethics, May 1, 2007; 33(5): 255 - 260. [Abstract] [Full Text] [PDF]

				J. R. Serwint and M. E. Nellis Deaths of Pediatric Patients: Relevance to Their Medical Home, an Urban Primary Care Clinic Pediatrics, January 1, 2005; 115(1): 57 - 63. [Abstract] [Full Text] [PDF]

				P. H. Wise The Transformation Of Child Health In The United States Health Aff., September 1, 2004; 23(5): 9 - 25. [Abstract] [Full Text] [PDF]

				C. Feudtner Perspectives on Quality at the End of Life Arch Pediatr Adolesc Med, May 1, 2004; 158(5): 415 - 418. [Full Text] [PDF]

				E. M. Andresen, G. A. Seecharan, and S. S. Toce Provider Perceptions of Child Deaths Arch Pediatr Adolesc Med, May 1, 2004; 158(5): 430 - 435. [Abstract] [Full Text] [PDF]

				I. J Higginson and M. Thompson Children and young people who die from cancer: epidemiology and place of death in England (1995-9) BMJ, August 30, 2003; 327(7413): 478 - 479. [Full Text] [PDF]

				C. Feudtner, D. A. Christakis, F. J. Zimmerman, J. H. Muldoon, J. M. Neff, and T. D. Koepsell Characteristics of Deaths Occurring in Children's Hospitals: Implications for Supportive Care Services Pediatrics, May 1, 2002; 109(5): 887 - 893. [Abstract] [Full Text] [PDF]

	Home | My Pediatrics | Journal Information | Current Issue | Past Issues | Subscriptions & Services | Contact Us Click here for faster international access © 2002 American Academy of Pediatrics. All rights reserved.