Paediatric palliative care in the NICU: A new era of integration

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Abstract

We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the principles of paediatric palliative care and how they apply in the NICU, considers who provides palliative care in this setting and outlines the key components of care. We consider how the international standards of palliative care pertain to neonatal medicine and how a fully integrated approach to care may be realised across these two disciplines.

Palliative care is so much more than end-of-life care, offering a proactive and holistic approach which addresses the physical, emotional, spiritual and social needs of the infant and family. This is a truly interdisciplinary endeavour, relying on a harmonisation of the skills from both the neonatal and palliative care teams to deliver high-quality coordinated care.

Introduction

Paediatric Palliative Care (PPC) has developed into a distinct paediatric subspecialty since its origins in the 1980s and is now recognised as a structured multidimensional approach to the care of children and young people with life-limiting conditions [1,2]. The integration of a fully holistic and interdisciplinary model of palliative care into neonatal care has arguably been varied and slow to come to fruition. Only now are we beginning to witness a new era of integration between neonatal medicine and palliative care. This brings together highly experienced professionals from different disciplines, who independently possess some of the most nuanced skills in the management of society's most vulnerable patients. Indeed neonatal teams are well versed in the overall management of infants with life-limiting conditions and in applying highly technical solutions to the care of a complex patient population with comparatively high mortality rates [3]. These skills are complemented by those of palliative care teams who bring expertise in complex symptom management, advance care planning, family support, and end of life and bereavement care.

As well as an appreciation that many infants on the Neonatal Intensive Care Unit (NICU) can benefit from a palliative care approach [[4], [5], [6]], there is now an increasing understanding that families value palliative care support even before an infant is born, when a life-limiting or potentially life-limiting condition is diagnosed during fetal life [[7], [8], [9]]. The provision of palliative care throughout the perinatal period, commonly referred to as perinatal palliative care, allows for emotional, social, and functional support of pregnant persons and their families and provides a continuum of care from pregnancy through delivery and beyond. Perinatal palliative care support includes helping the parents and the medical teams to anticipate possible outcomes, often in a context of uncertainty, in order to make decisions and plan for an infant's future care.

Section snippets

Principles of paediatric palliative care

The World Health Organisation (WHO) defines palliative care for children as follows:

“the active total care of the child’s body, mind and spirit and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.” [10].

This definition encapsulates two of the core principles of palliative care for children, the fact that it is an active and total approach and the fact that it should

Who delivers palliative care?

Palliative care need not always be delivered by specialist teams; rather it provides a structured way of delivering appropriate clinical care in a more holistic and supportive way. Upholding the principles of palliative care is the responsibility of all healthcare professionals who care for children with life limiting or life-threatening conditions regardless of where they are being cared for. Core palliative care skills exist in most neonatal and paediatric teams, in community paediatric and

Components of palliative care

  • •Symptom Management

Neonates with a life-limiting or life-threatening illness may experience a wide range of symptoms including pain, breathlessness, agitation, seizures, and feeding intolerance. Whilst neonatal teams will have expertise in managing all of these symptoms, palliative care teams may be able to advise on alternative and novel approaches to management, particularly when symptoms are refractory to standard treatment and when the goals of treatment may be shifting towards a focus on

International standards

Globally 2.4 million children died in the first month of life in 2020 and newborn deaths accounted for nearly half (47%) of all child deaths under the age of 5 years [36]. Most neonatal deaths (75%) occur during the first week of life and are caused most frequently by preterm birth, childbirth-related complications (birth asphyxia or lack of breathing at birth), infections and birth defects [36]. Despite the majority of newborn deaths occurring in the developing world, children living in low to

An integrated and interdisciplinary approach

In this new era of perinatal and neonatal palliative care, further progress will rely on a truly interdisciplinary approach, drawing on expertise from a host of specialists working across the spectrum of maternal and child health and synthesising this expertise into a coherent whole. Whilst a multidisciplinary approach requires different specialists to collaborate whilst staying within their disciplinary boundaries, interdisciplinarity requires a harmonisation between disciplines to deliver

Research agenda

Whilst research in PPC has seen important advances in recent years there is a pressing need for further research in this area, particularly in the evolving subspecialties of perinatal and neonatal palliative care. Central to this is a recognition that the routine collection of high-quality standardised data is crucial to evaluate both the need for PPC services and the effectiveness of their delivery [49]. Integration of routine data collection regarding infants receiving palliative care into

Conclusions

A new era of integration of palliative care into neonatal medicine is upon us, offering promising advancements in the quality of the care provided to infants with life limiting and life threatening conditions and to their families. Continued progress will rely on ongoing interdisciplinary collaboration centered on providing early and longitudinal care utilising a holistic approach. The cornerstone of success will be the delivery of excellent palliative care by every team member, through ongoing

Practice points

  • PPC is an active and total approach to care and should begin early and irrespective of disease-directed treatment

  • Palliative care in the NICU can be provided by frontline neonatal staff with support from specialist PPC teams

  • The level of care provided should be defined according to the specific needs of the child and family and may change over time

  • Where a life-limiting condition is diagnosed antenatally families will benefit from palliative care support before birth to help to plan their infant's

Funding

This research was funded in whole, or in part, by the Wellcome Trust [224744/Z/21/Z]. The funders had no role in the preparation of this manuscript or the decision to submit for publication. For the purpose of open access, the author(s) has applied a Creative Commons Attribution (CC BY) license to any Author Accepted Manuscript version arising from this submission.

All research at Great Ormond Street Hospital NHS Foundation Trust is made possible by the NIHR Great Ormond Street Hospital

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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