Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers.

Hilda Mekelenkamp,Anne Kozijn,Daphna Hutt,Marjola Gjergji,Arnaud Dalissier,Jacques-Emmanuel Galimard,Peter Bader,Eugenia Trigoso,Sarah Liptrott,Michelle Kenyon,Selim Corbacioglu,John Murray,Teija Schröder

doi:10.3390/children8080615

Abstract

Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation.

Highlights

Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients with malignant and non-malignant disorders [1,2]
HSCT is a successful therapy offering the possibility of a cure for life-threatening conditions; it is an intensive treatment with risk of serious complications, significant physical and psychological symptoms, poor quality of life (QoL), and can be lethal [3,4,5,6]
As reported in previous studies, pediatric patients who died following HSCT were often treated in the pediatric intensive care unit (PICU) with invasive treatments during End-of-Life (EOL) [4,6,7,8]

Summary

Introduction

Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients with malignant and non-malignant disorders [1,2]. As reported in previous studies, pediatric patients who died following HSCT were often treated in the pediatric intensive care unit (PICU) with invasive treatments during End-of-Life (EOL) [4,6,7,8]. Of these studies, three showed that pediatric HSCT patients often died from treatment-related complications (60, 68, and 81%) compared to disease-related (40, 32, and 19%) [4,6,8]. A large cross-national study among 11 countries reported that the hospital was the most common place of death for children with complex chronic conditions [11]. Palliative care involvement has been shown to improve concordance rates between patient/family goals and place of death [14]

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