The framework for doctors dealing with end of life care for children and young people sets out when it can be considered no longer in the best interests of the child to give life-sustaining treatment.
It provides an ethical and legal framework for doctors and has been written by medics, lawyers and ethicists.
This framework takes account of advances in medicine over the past ten years, including increased survival rates for infants born at 22-25 weeks and technology that has improved so that many of the sickest children are able to survive.
There has also been an increase in the availability of children’s palliative care services.
The framework provides three sets of circumstances when limiting treatment can be considered because it is no longer in the child’s best interests to continue:
- When life is limited in quantity: If treatment is unable or unlikely to prolong life significantly it may not be in the child’s best interests to provide it.
- When life is limited in quality: This includes situations where treatment may be able to prolong life significantly but will not alleviate the burdens associated with illness or treatment itself.
- Informed competent refusal of treatment: An older child with extensive experience of illness may repeatedly and competently consent to the withdrawal or withholding of life sustaining treatment. In these circumstances, and where the child is supported by his or her parents and by the clinical team, there is no ethical obligation to provide life sustaining treatment.
Dr Joe Brierley, Chair of the Ethics and Law Advisory Committee at the RCPCH, said: “This is a sensitive and challenging area of medicine. The guiding principle remains to act in the best interest of the child, actively involving them in the decision making where possible, and of course considering the interests of the families and their rights.
“Decisions to limit treatments should be made by clinical teams in partnership with, and with the agreement of, the parents and child.
“It’s also important to remember that decisions to limit life-sustaining treatment do not constitute withdrawal of care. Treatments, including palliative care, to relieve suffering of the child should be offered early in the course of life-limiting or life-threatening illness.”
Together for Short Lives has welcomed the new framework; director of practice at the national charity, Katrina McNamara, said: “We know that making crucial decisions for a child’s care is never easy and making the decision to stop life sustaining treatment is one of the most challenging decisions clinicians face.
“This new guidance provides a clear framework. It is based on the best interests of the child whilst encouraging sensitive collaboration with the family and older children. Importantly it stresses the need for ongoing palliative care, including pain and symptom management, and that decisions to limit life-sustaining treatment do not constitute withdrawal of care.”
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