Withdrawing or withholding life-sustaining treatment
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 can feel insurmountable.
Difficult decisions need to be taken, keeping the focus on doing what is in the best interests of the baby, child or young person, and with full and open discussion with parents and carers.
For those children where treatment can merely sustain life, but cannot restore health or confer other benefits, withdrawing treatment and the provision on good palliative care can be an active and positive experience for the child, family and the professionals around them. It is vital that the child and their parents and carers fully understand that withdrawing treatment does not mean abandoning care, comfort and pain and symptom management, or support for the whole family.
Some situations are so complex and uncertain that treatments are embarked upon and can be very difficult to draw back from when the primary problem becomes untreatable. Drawing back from these interventions can be one of the most difficult and emotional areas of clinical care and practice.
The whole process of withdrawing life-sustaining treatment is one where everyone needs help. Firstly, parents need to be given information and time to understand all the options and implications of each, and then professionals, so that they can explain all of this in a way that parents can understand. This is an area of care where decisions cannot easily be made by a single professional and discussion with colleagues is vital.
There are a range of tools and information to support professionals to support families to make informed choices at this difficult time. We have also developed a dedicated resource to help families explore critical care choices. Together for Short Lives believes that families should be informed about the different care and support options available from the outset so that they can make informed choices. However, every child is unique and choices will be limited by their specific needs and the availability of resources in the child and family’s local area.
Withdrawing life-sustaining treatment has many unique facets. Care is often initially provided in busy intensive care environments in which the child’s condition and prognosis may change suddenly. Family members will find that their lives, which will have already been significantly affected by the child’s serious decline in health, will be affected in an even more profound manner by the withdrawal of treatment.
The Royal College of Paediatrics and Child Health (RCPCH) has provided a framework called Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice, to support practitioners as they move towards a decision about withdrawing life-sustaining treatment. RCPCH has also produced a recent and clear statement on the on three key sets of circumstances when withdrawing life-sustaining treatment may be considered.
Professionals working in intensive care services are used to providing sophisticated expert care utilising high levels of technical skills and knowledge. These professionals are now being increasingly challenged to provide palliative care as an integral part of the child’s care.
We also know that death soon after withdrawal of treatment is not the only outcome, even when it is anticipated. This unpredictability confirms the need for parallel planning to ensure the ongoing care of the child or young person in cases where they survive. This uncertainty and variability clearly has implications for communication, decision-making and planning at every stage.
Together for Short Lives has a range of care pathways to support babies, children and young people with life-limiting or life-threatening conditions. They aim to improve the provision and consistency of care and support to children and families, and will help provide a clear pathway from diagnosis or recognition, through ongoing care to the child’s end of life and into bereavement. These are:
- A perinatal pathway for babies with palliative care needs
- Core care pathway for children with life-threatening and life-limiting conditions
- Stepping Up: A guide to enabling a good transition to adulthood for young people with life-limiting and life-threatening conditions
- A care pathway to support extubation within a children’s palliative care framework.
Our pathways are guided by standards at each different stage of the journey. They aim to improve the provision and consistency of care and support to children and families, and will help provide a clear pathway from diagnosis or recognition, through ongoing care to the child’s end of life and into bereavement.
Professionals and parents can also call our Together for Families Helpline on 0808 8088 100 for support and information around withdrawing life-sustaining treatment.