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Royal College outlines criteria for stopping treatment in very sick children

New practice framework aims to minimise suffering and guide doctors through legal and ethical issues

Caroline White

Tuesday, 24 March 2015

If treatment can’t prolong a very sick child’s life significantly, it may be in that child’s best interests to discontinue it, says a new practice framework issued today by the Royal College of Paediatrics and Child Health.

The framework*, which appears in a special supplement of Archives of Disease in Childhood, sets out the circumstances in which limiting treatment can be considered because it is no longer in the child’s best interests.

The framework aims to minimise suffering and help doctors dealing with end of life care for very sick children and young people navigate the often vexed legal and ethical issues in these cases.

The framework, drawn up by doctors, lawyers, and ethicists, sets out three criteria for making decisions to limit treatment in life limiting or life-threatening conditions among children.

  • 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 it.

Since the last version of the framework was published 10 years ago, survival rates for infants born at 22-25 weeks have increased, and technology has improved, so that many of the sickest children are now able to survive. Children’s palliative care services are also now much more widely available than a decade ago. 

But for some newborns, or children who have a serious infectious disease or who have sustained catastrophic injury, lives are prematurely cut short and many deaths occur in hospital settings following decisions to withhold, withdraw, or limit life sustaining treatment.

Dr Simon Newell, a consultant neonatologist in Leeds and a former vice president at the College, commented: “During the last 30 years working on neonatal units, I’ve seen some very ill newborns. 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 makes it 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 RCPCH Ethics and Law Advisory Committee, added:

“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.”

* Vic Larcher, et al, on behalf of the Royal College of Paediatrics and Child Health. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Arch Dis Child 2015;100:s1-s23 doi:10.1136/archdischild-2014-306666

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