Doctors dealing with end of life care for children and young people are being issued with a new framework for practice today, setting out when it can be considered no longer in the best interests of the child to give life sustaining treatment.
The Royal College of Paediatrics and Child Health (RCPCH) has developed an ethical and legal framework for doctors when dealing with children and young people’s end of life situations.
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 (LST). 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 LST.
Since the last version of the framework was published 10 years ago, there are increased survival rates for infants born at 22-25 weeks and technology has improved so that many of the sickest children are able to survive.
There is also increasing availability of children’s palliative care services. However, for some newborns, or children who have suffered serious infectious disease or catastrophic injury lives are prematurely cut short and many deaths occur in hospital settings following decisions to withhold, withdraw or limit LST.
Dr Simon Newell, a Consultant Neonatologist in Leeds and a former vice president at the RCPCH, said: “During the last 30 years working on neonatal units, I’ve seen some very ill new-borns. Such is the advancement of medicine that thankfully we can successfully treat the majority of these babies and they go on to become healthy children and then adults.
“However, for some, continuing life-sustaining treatment is simply prolonging suffering in the face of the inevitable. For these babies, no treatment is going to cure them and their quality of life is non-existent. In these cases, an active decision is reached amongst the clinicians, parents and other parties involved to discontinue treatment rather than cause greater suffering for the child by keeping them alive.”
The framework is clear that in situations other than those described above, or where there is uncertainty about the nature of the child’s condition or its likely outcome, treatment should continue until greater certainty is possible.
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.”