Impact of palliative care on end-of-life care and place of death in children, adolescents, and young adults with life-limiting conditions: A systematic review.

Shih-Chun Lin,Mei-Chih Huang,Deni Yasmara,Huey-Lan Wuu

doi:10.1017/s1478951520001455

Abstract

To determine the impact of palliative care (PC) on end-of-life (EoL) care and the place of death (PoD) in children, adolescents, and young adults with life-limiting conditions. Eight online databases (PubMed, Medline, EMBASE, Cochrane Library, CINAHL, Airiti, GARUDA Garba Rujukan Digital, and OpenGrey) from 2010 to February 5, 2020 were searched for studies investigating EoL care and the PoD for pediatric patients receiving and not receiving PC. Of the 6,468 citations identified, 14 cohort studies and one case series were included. An evidence base of mainly adequate- and strong-quality studies shows that inpatient hospital PC, either with or without the provision of home and community PC, was found to be associated with a decrease in intensive care use and high-intensity EoL care. Conflicting evidence was found for the association between PC and hospital admissions, length of stay in hospital, resuscitation at the time of death, and the proportion of hospital and home deaths. Current evidence suggests that specialist, multidisciplinary involvement, and continuity of PC are required to reduce the intensity of EoL care. Careful attention should be paid to the need for a longer length of stay in a medical setting late in life, and earlier EoL care discussion should take place with patients/caregivers, especially in regard to attempting resuscitation in toddlers, adolescents, and the young adult population. A lack of robust evidence has identified a gap in rigorous multisite prospective studies utilizing data collection.

Highlights

Life-limiting conditions are those for which there is no possibility of cure, where death is inevitable at some point in time during childhood or young adulthood (McNamara-Goodger and Feudtner, 2012; Fraser and Parslow, 2018)
This review examined the impact of palliative care (PC) on end of life (EoL) care and place of death (PoD) in children, adolescents, and young adults with life-limiting conditions based on different models of care
PC was associated with a reduction in intensive care unit (ICU) admissions, ICU deaths, and high-intensity EoL care (HI-EoL) care in the last month of life

Summary

Introduction

Life-limiting conditions are those for which there is no possibility of cure, where death is inevitable at some point in time during childhood or young adulthood (McNamara-Goodger and Feudtner, 2012; Fraser and Parslow, 2018). It was estimated that only 18.6% of them received PC before death (Widger et al, 2016) The majority of this population goes through a prolonged period of inpatient admission, primarily in intensive care unit (ICU) settings during EoL, and die in the hospital (Gao et al, 2016; DeCourcey et al, 2018). A growing body of evidence demonstrates that receiving early PC improves the quality of life and symptom control, facilitates earlier advanced care planning or planned withdrawal of ventilator support outside the ICU setting, and enables a choice in the place of death (PoD) outside of hospital (Abel et al, 2013; Laddie et al, 2014; Mitchell et al, 2017). There is limited scientific evidence by which to illustrate the impacts of PC on children, adolescents, and young adults with life-limiting conditions in terms of their healthcare circumstances and outcomes during the EoL

Methods

Results

Discussion

Conclusion