The medical complexities involved in caring for children at end of life have increased during the past few decades. This study sought to understand what hospice services were offered for these children and to examine service trends among pediatric hospice providers over a 7-year (2002-2008) timeframe. The number of core hospice services diminished in 2003 (IRR = 0.873, 95% CI [0.795,0.971]) and 2004 (IRR = 0.889, 95% CI [0.793, 0.995]); however, by 2008 there was an increase in offering core (IRR = 1.130, 95% CI [1.038,1.230]), noncore (IRR = 1.117, 95% CI [1.013,1.231]), and other hospice (IRR = 1.117, 95% CI [1.005,1.583]) services among pediatric providers. These findings highlight the importance of family-clinician communication about needed services prior to admitting children to hospice care.
BurnsKCaseyPLyleRBirdTFussellJRobbinsJ. Increasing prevalence of medically complex children in US hospitals. Pediatrics. 2010;126(4):638–646.
2.
GowensMKeenanHTBrattonSL. The population prevalence of children receiving invasive home ventilation in Utah. Pediatr Pulmonol. 2007;42(3):231–236.
3.
SrivastavaRStoneBMurphyN. Hospitalist care of the medically complex child. Pediatr Clin N Am. 2005;52:1165–1187.
4.
Hendricks-FergusonV. Physical symptoms of children receiving pediatric hospice care at home during the last week of life. Oncol Nurs For. 2008;35(6):e108–e115.
5.
Institute of Medicine. When children die improving palliative and end-of-life care for children and their families. Washington, DC: National Academy Press; 2003.
6.
US Government Printing Office. Code of Federal Regulations42CFR418. 2008.
7.
DaviesBBrennerPOrloffSSumnerLWordenW. Addressing spirituality in pediatric hospice and palliative care. J Palliat Car. 2002;18(1):59–67.
8.
DickensDS. Comparing pediatric deaths with and without hospice support. Pediatr Blood Cancer. 2010;54(5):746–750.
DaviesBSteeleRCollinsJBCookKSmithS. The impact on families of respite care in a children's hospice program. J Palliat Car. 2004;20(4):277–286.
11.
DaviesBCollinsJSteeleRCookKDistlerVBrennerA. Parents' and children's perspectives of a children's hospice bereavement program. J Palliat Car. 2007;23(1):14–23.
12.
LeuthnerSRBoldtAMKirbyRS. Where infants die: Examination of place of death and hospice/home health care options in the state of Wisconsin. J Palliat Med. 2004;7(2):269–277.
13.
Sanchez VarelaAMDealAMHansonLCBlattJGoldSDellonEP. Barriers to hospice for children as perceived by hospice organizations in North Carolina. Am J Hosp Palliat Car. 2012;29(3):171–176.
14.
D'AunnoTVaughnTE. An organizational analysis of service patterns in outpatient drug abuse treatment units. J Subst Abuse. 1995;7(1):27–42.
15.
FriedmannPDAlexanderJAJinLD'AunnoTA. On-site primary care and mental health services in outpatient drug abuse treatment units. J Behav Healt Serv Res. 1999;26(1):80–94.
16.
National Hospice and Palliative Care Organization. NHPCO Facts and Figures: Hospice Care in America; 2009.
17.
KleinbaumDGKupperLLMullerKE. Applied Regression Analysis and Other Multivariable Methods. Boston: PWS-KENT; 1988.
18.
ZegerSLLiangK. Longitudinal data analysis for discrete and continuous outcomes. Biometr. 1986;42(1):121–130.
19.
LiangKZegerSL. Longitudinal data analysis using generalized linear models. Biometrika. 1986;73(1):13–22.
20.
BrandonDDochertySThorpeJ.Infant and child deaths in acute care settings: Implications for palliative care. J Palliat Med. 2007;10:910–918.
21.
ConnorSR. Hospice and Palliative Care. New York, NY: Routledge. 2009.
22.
McCabeMHuntESerwintJ. Pediatric residents' clinical and educational experiences with end-of-life care. Pediatr. 2008;121(4):e731–737.
23.
JavierNSMontagniniML. Rehabilitation of the hospice and palliative care patient. J Palliat Med. 2011;14(5):638–648.
24.
FrostM. The role of physical, occupational, and speech therapy in hospice: Patient empowerment. Am J Hosp Palliat Car. 2001;18(6):397–402.
25.
FisherGKeehnM. Workforce Needs and Issues in Occupational and Physical Therapy. Chicago, IL: UIC Midwest Center for Workforce Studies; 2007.
