This Article  • Full text  • PDF  • Send to a friend  • Save in My Folder  • Save to citation manager  • Permissions  Citing Articles  • Citation map  • Citing articles on HighWire  • Citing articles on Web of Science (14)  • Contact me when this article is cited  Related Content  • Similar articles in JAMA  Topic Collections  • Patient-Physician Relationship/ Care  • End-of-life Care/ Palliative Medicine  • Pediatrics  • Pediatrics, Other  • Alert me on articles by topic  Social Bookmarking   What's this?

Chris Feudtner, MD, PhD, MPH; James A. Feinstein, MD; Marlon Satchell, MPH; Huaqing Zhao, MS; Tammy I. Kang, MD

JAMA. 2007;297:2725-2732.

Context  The place where children with complex chronic conditions are dying may be shifting toward residential homes due to the evolving epidemiology of life-threatening childhood conditions, advances in home-based medical technology, and changes in attitudes about pediatric palliative care and hospice services.

Objectives  To determine whether pediatric deaths attributed to complex chronic conditions are increasingly occurring in the home and to assess race and ethnicity disparities in the location of death.

Design, Setting, and Participants  Retrospective national-level case series drawn from the National Center for Health Statistics' Multiple Cause of Death Files spanning 1989-2003. Participants included all deceased individuals aged 19 years or younger with a complex chronic condition excluding injury and noncomplex chronic conditions (as classified by International Classification of Diseases, Ninth Revision or International Classification of Diseases, Tenth Revision).

Main Outcome Measure  Place where death occurred.

Results  Among the 22.1% of deaths (198 160 of 896 509 total deaths) attributed to a complex chronic condition between 1989 and 2003, the percentage of individuals dying at home increased significantly (P<.001) over time for infants (aged <1 year) (4.9% in 1989 and 7.3% in 2003); 1- to 9-year-olds (17.9% and 30.7%); and for 10- to 19-year-olds (18.4% and 32.2%). Adjusting for decedent characteristics, the odds of dying at home increased significantly each year (odds ratio, 1.04; 95% confidence interval, 1.03-1.04) and were reduced among both black and Hispanic decedents (odds ratio, 0.50; 95% confidence interval, 0.48-0.52 and odds ratio, 0.52; 95% confidence interval, 0.50-0.54, respectively) compared with white decedents.

Conclusions  Children who die with underlying complex chronic conditions increasingly are dying at home. Racial and ethnic disparities regarding place of death may represent important limitations and opportunities for improvement in the current systems of pediatric chronic and palliative care.

Author Affiliations: The Pediatric Advanced Care Team (Drs Feudtner and Kang), the Pediatric Generalist Research Group (Drs Feudtner and Feinstein, Ms Satchell), the Biostatistics and Data Management Core (Mr Zhao), Children's Hospital of Philadelphia, Philadelphia, Pa; Division of General Pediatrics (Drs Feudtner and Feinstein, Ms Satchell) and Oncology (Dr Kang), Department of Pediatrics, University of Pennsylvania School of Medicine; The Leonard Davis Institute and the Center for Bioethics, University of Pennsylvania (Dr Feudtner).

CiteULike    Connotea    Del.icio.us    Digg    Reddit    Technorati    Twitter     What's this?

THIS ARTICLE HAS BEEN CITED BY OTHER ARTICLES

Diagnostic Spaces: Workhouse, Hospital, and Home in Mid-Victorian London
Mooney
Social Science History 2009;33:357-390.
ABSTRACT  

Predictors of Clinical Outcomes and Hospital Resource Use of Children After Tracheotomy
Berry et al.
Pediatrics 2009;124:563-572.
ABSTRACT | FULL TEXT  

Pediatricians' Perceptions of and Preferred Timing for Pediatric Palliative Care
Thompson et al.
Pediatrics 2009;123:e777-e782.
ABSTRACT | FULL TEXT  

How Well Can Hospital Readmission Be Predicted in a Cohort of Hospitalized Children? A Retrospective, Multicenter Study
Feudtner et al.
Pediatrics 2009;123:286-293.
ABSTRACT | FULL TEXT  

A report on location of death in paediatric palliative care between home, hospice and hospital
Siden et al.
Palliat Med 2008;22:831-834.
ABSTRACT  

Population-based study of dying in hospital in six European countries
Cohen et al.
Palliat Med 2008;22:702-710.
ABSTRACT  

What Accounts for Differences or Disparities in Pediatric Palliative and End-of-Life Care? A Systematic Review Focusing on Possible Multilevel Mechanisms
Linton and Feudtner
Pediatrics 2008;122:574-582.
ABSTRACT | FULL TEXT  

Children's Wishes: Holistic Revelations in Art
Ewing
J Holist Nurs 2008;26:147-154.
ABSTRACT  

Being Specific About Being Special: Defining Children's Conditions and Special Health Care Needs
Davis and Brosco
Arch Pediatr Adolesc Med 2007;161:1003-1005.
FULL TEXT  

Pediatric Chronic Diseases--Stealing Childhood
Zylke and DeAngelis
JAMA 2007;297:2765-2766.
FULL TEXT