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Abstract
Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes studies that reported PC timing in the pediatric oncology population. The following databases were searched: PubMed, Web of Science, CINAHL, and PsycInfo databases. Studies that reported time of PC initiation were independently screened and reviewed by 2 researchers. Studies describing pilot initiatives, published prior to 1998, not written in English, or providing no empirical time information on PC were excluded. Extracted data included sample characteristics and timing of PC discussion and initiation. Of 1120 identified citations, 16 articles met the inclusion criteria and comprised the study cohort. Overall, 54.5% of pediatric oncology patients received any palliative service prior to death. Data revealed PC discussion does not occur until late in the illness trajectory, and PC does not begin until close to time of death. Despite efforts to spur earlier initiation, many pediatric oncology patients do not receive any palliative care service, and those who do, predominantly receive it near the time of death. Delays occur both at first PC discussion and at PC initiation. Efforts for early PC integration must recognize the complex determinants of PC utilization across the illness timeline.
Highlights
The World Health Organization (WHO) released a seminal report, titled Cancer Pain Relief and Palliative Care in Children, in which it recommended that palliative care (PC) for children with cancer ought to begin at diagnosis, irrespective of prognosis.[1]
We developed the following Boolean search phrase based on controlled vocabulary results from the Medical Subject Headings (MeSH) terms database: (Palliative OR Hospice OR End‐of‐Life) AND (Pediatric* OR Child* OR Adolescent* OR Teen*) AND (Cancer OR Oncology OR Tumor* OR Neoplas*) AND (Duration OR Start* OR Time death OR Timing death OR Begin OR Began OR Time referr* OR Timing referr*)
Comparing PC provision within studies and across publications, it is apparent that PC integration was delayed at two time points: first PC discussion occurs late in the illness trajectory, and there is a delay between the initial conversation and start of PC
Summary
The World Health Organization (WHO) released a seminal report, titled Cancer Pain Relief and Palliative Care in Children, in which it recommended that palliative care (PC) for children with cancer ought to begin at diagnosis, irrespective of prognosis.[1]. Numerous studies have demonstrated that the tight prognostic limits of hospice—a type of PC reserved for the end‐of‐life—are incompatible with the full spectrum of physical, psychological, social, and spiritual needs.[8,9,10] PC
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