A care pathway to support extubation within a children's palliative care framework

As well as being emotionally challenging this issue presents particular ethical and legal considerations and dilemmas. Yet for those children in circumstances where treatment can merely sustain life, but cannot restore health or confer other benefits, then compassionately withdrawing treatment and the provision of good palliative care can be an active and positive experience for the child, the family and all the professionals that support them.

A Care Pathway to Support Extubation within a Children’s Palliative Care Framework has been developed in collaboration with some of the UK’s leading experts in children’s palliative care and critical care. It sits alongside Together for Short Lives' core palliative care pathways for babies, children and young people, and fits within the wider policy and good practice framework around withdrawing life-sustaining treatment.

Together for Short Lives’ experience in neonatal, children’s and young people’s palliative care has shown us that more children with life-limiting or life-threatening conditions are being enabled to live longer through ongoing advances in medical care, including the use of mechanical ventilation. Some of these children have a very poor prognosis. This pathway focuses on children who are in the situation of being at the end of their life and dependent on respiratory support. Many of these children will be in an intensive care environment.

Some of these children are now being given the choice to die at home, in a hospice or a hospital closer to home, where the withdrawal of mechanical ventilation is part of their end of life care plan. Making the decision to follow this pathway can enable some families to spend precious moments with their child outside of this highly clinical and technical environment.
A Care Pathway to Support Extubation within a Children’s Palliative Care Framework provides professionals with the tools that they need to support families to make informed choices at this difficult time. The pathway provides a template to draw together all the professionals and resources needed to support the child and family along their unique care journey before, during and after extubation, where this is their chosen end of life care option, wherever that process takes place.

The pathway aims to:

• Support the overall process of extubation in a wide range of environments including: critical care settings, general hospitals, children’s hospices and the child’s home.

• Facilitate communication between professionals and the child and their family so that they can explore care options, make individualised choices that are right for them, and enable the professionals supporting them to develop and implement an agreed care plan.

• Provide a flexible tool that can accommodate the specific needs of the family, whatever their decision.
• Provide the framework and tools that can be adapted to fit with local services and practice.

• Encourage parallel planning to take into account the unknown outcome following the extubation of a child.

This document is divided into three parts:

• Part one provides an introduction to children’s palliative care and ACT’s care pathway approach. It discusses the need for a dedicated pathway approach and outlines the principles that Together for Short Lives recommends in adopting and delivering the care pathway.

• Part two takes the reader through the Together for Short Lives care pathway to support extubation within a children’s palliative care framework. There are three stages to the pathway: the journey towards a decision to withdraw life-sustaining ventilation; the practicalities of withdrawing life-sustaining ventilation; and care at the time of death.

• Part Three provides useful reference information, a glossary of terms and definitions and a directory of useful organisations which will be of use to professionals and the families that they support.

A Care Pathway to Support Extubation within a Children’s Palliative Care Framework is essential reading for all professionals who may support children with palliative care needs throughout their journey and end of life stage, including professionals who work in the children’s palliative care sector, in general hospitals, children’s hospices or in the community, or in specialist hospital services such as critical care settings in neonatology, intensive care, neurology, oncology and cardiology.

A Care Pathway to Support Extubation within a Children’s Palliative Care Framework is complemented by a new resource for families; A parent’s guide: Making critical care choices for your child. This leaflet is designed to help families to make informed and realistic choices and decisions about treatment and critical care choices for their child.