Guidance on withholding and withdrawing treatment of sick children to be updated

BMJ 2013; 346 doi: (Published 24 April 2013) Cite this as: BMJ 2013;346:f2643
  1. Ingrid Torjesen
  1. 1London

The Royal College of Paediatrics and Child Health is reviewing its guidance on withholding and withdrawing medical treatment of sick children, amid continuing controversy over a national newspaper story alleging that some sick children have been placed on the Liverpool care pathway.

Simon Newell, the college’s vice president for training and assessment, told the BMJ that he did not expect any radical changes to its existing guidance, which was published in 2004 so is due for updating,1 when it is published in the next few months. But he admitted that the publication is timely, with the Liverpool care pathway and euthanasia having featured recently in the national press.

In November 2012 the Daily Mail ran a front page story entitled, “Now sick babies go on death pathway,” as part of its campaign to expose alleged misuse of the Liverpool care pathway. The story claimed that NHS hospitals were discharging sick children and babies to hospices or their homes, where food and fluid were withdrawn until they died.

The Press Complaints Commission has launched an inquiry into the story, which said that a “doctor admits starving and dehydrating ten babies to death in neonatal unit.”2 It later emerged that the testimony, which was taken from an article in the BMJ, came from a physician who practised in another country.3

The 2004 guidance outlines five instances when it may be ethical and legal to consider withholding or withdrawing life sustaining treatment, including artificial nutrition and intravenous hydration. These instances are:

  • The “brain dead” child

  • The “permanent vegetative” state in which the child is reliant on others for all care and does not react or relate to the outside world

  • The “no chance” situation where life sustaining treatment simply delays death without any significant alleviation of suffering

  • The “no purpose” situation, where although the child may be able to survive with treatment, physical or mental impairment would be so great that it would be unreasonable to expect the child to bear it, and

  • The “unbearable” situation, where the family believes that in the face of progressive and irreversible illness further treatment would be more than could be borne.

Newell said that there were instances, for example, where the administration of milk would add to a very sick child’s suffering rather than provide comfort to them and therefore would not be a good thing to do. Examples included a child with serious and terminal bowel disease or a child who was choking.

Newell added that withdrawing care from a dying baby was a much more emotive and difficult situation for doctors than when an adult was the patient. An adult could clearly and competently state their wishes, he said. “Quite obviously a baby cannot. With a baby we have to make decisions on behalf of that baby, and that’s where we get our guiding rule, which is to do what is in the child’s best interests.”

In the Netherlands doctors are allowed to not only withdraw treatment but actively terminate life, under the Groningen protocol,4 in “infants with a hopeless prognosis who experience what parents and medical experts deem to be unbearable suffering.” The Netherlands has also decriminalised doctors’ involvement in voluntary euthanasia (where a doctor ends a life at the patient’s explicit request) and assisted suicide (where the patient takes a deadly drug and the doctor assists) in certain circumstances.5

Julian Savulescu, editor of the Journal of Medical Ethics, which has a forthcoming special issue focusing on issues of infanticide, said in his editorial in the issue: “Infanticide is an important issue and one worthy of scholarly attention because it touches on an area of concern that few societies have had the courage to tackle honestly and openly: euthanasia.”6

He told the BMJ that Dutch doctors had used the Groningen protocol in only a handful of cases, including one involving a baby with the excruciatingly painful blistering skin condition epidermolysis bullosa, who would have had a very low quality of life. “It is even more difficult than the usual euthanasia debate which involves competent people who say they want to die. Here you have babies who can’t speak for themselves, so it is one of the most divisive debates.”

Savulescu added, “There are no proposals here to change the law. However, it is an issue that continues to trouble staff, doctors, and parents, and it is one that hasn’t been resolved—and our role really is to allow wide ranging debate.”


Cite this as: BMJ 2013;346:f2643