ACT - New resources to support the withdrawal of a child's life-sustaining treatment
ACT launches new resources to support the withdrawal of life-sustaining treatment within a children's palliative care framework
Withdrawing any life-sustaining treatment is one of the most difficult areas of clinical practice that professionals will face, and finding the right way to open up this dialogue with parents, children and young people with life-limiting or life-threatening health conditions can feel very daunting.
UK children's palliative care charity ACT has launched two new resources to support those professionals caring for children at their end of life, and to guide parents who are faced with thinking about the right critical care choice for their child. Both are supported by the Department of Health. They are:
A Care Pathway to Support Extubation within a Children's Palliative Care Framework
A parent's guide: Making critical care choices for your child
ACT's Care Pathway to Support Extubation within a Children's Palliative Care Framework provides professionals with the tools and resources they need to support a child and their family throughout the unique care journey before, during and after the withdrawal of life-sustaining ventilation (also known as extubation) and other treatment where this is their chosen end of life option. It has three key stages to guide the professional through the pathway:
· The journey towards a decision to withdraw life-sustaining ventilation.
· The practicalities of withdrawing life-sustaining ventilation.
· Care at the time of death.
ACT's new leaflet for parents and families, A parent's guide: Making critical care choices for your child, is designed to complement the new extubation care pathway for professionals. ACT hopes that the leaflet will help and support families to make informed and realistic choices and decisions about treatment and critical care choices for their child. It's been written for parents who have been told:
· That their child's prognosis has changed and their child is now at their end of life phase.
· There has been a change or deterioration in their child's health.
· Their child's treatment is no longer working, or that the treatment might cause more harm than benefit to their child.
· Further treatment may be unbearable for their child.
· There is no treatment available for their child's condition.
The parent's guide has been written in a simple question and answer style format, and includes some of the key questions or concerns that parents may have regarding critical care. These include:
· What are critical care choices?
· What is an end of life care plan?
· Will my child carry on getting the care and support they need?
· Do I have a choice in my child's critical care?
· How are critical care decisions made?
· What if I change my mind?
· What if my doctor and I do not agree?
There are sections designed to help parents think about the realistic choices for their child and a series of prompts are included to help parents talk to their doctor or healthcare team. The leaflet also includes a directory of useful support agencies and glossary of medical terminology to help guide parents through the jargon sometimes associated with critical care.
ACT hopes that this new leaflet will be available to parents in a range of clinical settings: including neonatal and paediatric intensive care units, children's hospices and specialist health services.
A parent's guide: Making critical care choices for your child can be downloaded free at the website above
or you can order free printed copies by emailing: This email address is being protected from spambots. You need JavaScript enabled to view it.
or calling ACT on 0117 916 6422
