Integrating palliative care and symptom relief into paediatrics

Overview

People younger than 20 years comprise 35% of the global population and 40% of the global population of least-developed nations. The number of children – neonates, infants, children, and adolescents up to 19 years of age – who need pediatric palliative care (PPC) each year may be as high as 21 million. Another study found that almost 2.5 million children die each year with serious healthrelated suffering and that more than 98% of these children are in low- and middle-income countries (LMICs). While estimates differ, there is no doubt that there is an enormous need for prevention and relief of suffering among children (Annexes 1 and 3) – for PPC. In response to the large-scale unnecessary suffering of children, the 2014 World Health Assembly resolution WHA67.19 on Strengthening of palliative care as a component of comprehensive care throughout the life course emphasizes that access to palliative care for children is an “ethical responsibility of health systems” (Annex 4).

Remarkably, however, PPC has not been seen as a priority around the world. A 2011 study found no PPC services in 65.6% of countries (5). Where services do exist in LMICs, they typically are available in only one or a few institutions and are not integrated into health care systems. A review of PPC in sub-Saharan African countries found that less than 1% of children needing palliative care in Kenya had access to it and less than 5% in South Africa and Zimbabwe. This guide is part of a series of World Health Organization (WHO) guidance documents on palliative care.

It describes the medical and moral necessity of making palliative care and pain relief accessible to all children in need, and their families. It offers an expanded conception of PPC based on the needs of children in LMICs as well as in high-income countries (HICs). It also proposes an Essential Package of Palliative Care for Paediatrics and Symptom Relief (EP Ped) and provides practical guidance on integrating PPC and pain relief into health care systems such that the quality of life of children and their families is improved, health care systems are strengthened and cost-effective models of service provision are implemented, all of which contribute to the goal of universal health coverage (UHC).

This document is not a clinical manual, and it does not provide clinical guidelines. Rather, its contents are relevant to anyone involved with planning, implementing or managing PPC, including officials of United Nations (UN) organizations working with children, Ministry of Health (MoH) officials, public health leaders, hospital managers, nongovernmental organizations (NGOs), general and specialist paediatricians, surgeons, anaesthesiologists, primary care providers and palliative care providers. It has been developed by a working group of experts in PPC and symptom relief from around the world with extensive experience in working in LMICs.