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Dutch doctors get guidance on care of terminally ill newborn babies

BMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f3948 (Published 18 June 2013) Cite this as: BMJ 2013;346:f3948
  1. Tony Sheldon
  1. 1Utrecht

The Royal Dutch Medical Association has published professional standards to try to clarify the line between palliative care of terminally ill newborn babies and deliberately killing them.

Driving the move is the apparent failure of doctors to report cases of mercy killing of newborn babies to the government’s expert review committee of physicians, lawyers, and ethicists, to which all such cases are meant to be reported. As with the Dutch policy on euthanasia, doctors who report and adhere to guidelines will not be prosecuted.1

However, since its launch in 2006 the Central Experts Committee has received only one case involving a newborn baby. Originally up to 20 reports a year were expected (www.lza-lp.nl).

Now the association’s new document aims to provide clarity for doctors and insight for parents and society over doctors’ decision making.2 Of the 750 000 babies born each year in the Netherlands, 650 die, many because of very severe abnormalities.

Central to the association’s standards are cases where the baby is deemed to be suffering unbearably and where further life prolonging medical treatment would be considered futile. In such cases, it argues, it is also futile to give artificial feeding and fluids. Though parents should be allowed time to come to terms with the decision, this should not be indefinite. It emphasises that the doctor’s first responsibility is to the newborn baby.

Significantly, the association accepts that it may then be justified to administer a muscle relaxant to hasten death. Certain conditions have to be fulfilled, however. The newborn baby must be showing signs of suffering, such as gasping for breath, or the unavoidable death must have become prolonged (taking 24 hours or more), so that it has become unbearable for the parents. These cases are defined as the deliberate ending of a life and must be reported.

Eduard Verhagen, head of paediatrics at Groningen University Medical Centre, who pioneered the reporting system, explained that the first reports submitted to the committee often concerned babies with the most severe cases of spina bifida. These stopped with the introduction of 20 week ultrasonography for pregnant women in 2007.

Today the argument has shifted to the need to report cases of newborn babies whose death, though inevitable, is likely to be prolonged and in which paediatricians act to end the life sooner. Many paediatricians regard this as normal palliative care.

Verhagen told the BMJ: “We know that physicians do not feel obliged to report these cases. Now we have tried to define to the last detail what we think should be reported. We have tried to define the area where palliative care stops and termination of life starts.”

Dick Willems, chairman of the committee that drew up the standards and professor in medical ethics at Amsterdam’s Academic Medical Centre, believes that the standards establish a consensus among professional colleagues over the circumstances in which “it is acceptable to stop treatment of newborns and also when it is justifiable to end, deliberately, their lives.”

He believes that reporting should increase as a consequence. “There are undoubtedly more cases where a decision is taken, for example to treat with a muscle relaxant once the newborn is taken off a respirator.” He estimates that such cases might be reported between one time and five times a year.

Notes

Cite this as: BMJ 2013;346:f3948

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