The Groningen Protocol, introduced in Holland in 2005, was devised to create a standard for doctors who had families that wanted to end the suffering of sick newborns for humanitarian reasons. It outlined parameters to help identify situations in which euthanasia is warranted and wouldn't land anyone in jail. 

The ethical concern - and it was controversial - was that this was a 'slippery slope' to broader euthanasia, the way abortion is often used in some countries to prevent sick children from being born at all. In a recent piece, NBC noted that 11,000 American babies die the same day they are born, a rate worse than in countries like Egypt, Turkey and Cuba(1), but that claim leaves out that American medical culture is about saving lives, even those babies with poor chances. Cuba has cholera epidemics but people claim their infant mortality rate means they have better health care, which is obvious spin - they're simply having babies go to term that are sure to be healthier, a cynical approach American medicine does not take. Yet.

In the UK, where nationalized health care has made death pathways a routine practice, you have stories where a hospital refuses to help a premature baby.  That doesn't happen in America.  But Save The Children, where NBC got the data for its rather flawed advocacy piece, makes it seem like that because doctors try to save babies and fail, our health system is to blame. 

Some worried there would be outrage about a euthanasia protocol but I worried about the opposite - that it wouldn't be a concern at all; while American medical culture of the past idealized the 'maverick' doctor standing up to administrators (and then insurance companies), with the government increasingly controlling health care, a new generation of doctors was brought up in a 'teach to the protocol' environment. Once a protocol is established, that's it, you follow it or you don't get paid and you will get a date in federal court.

Instead of there being outrage, ethicists started proposing ways it was fine - they had no problem calling it infanticide. Oddly, both sides of the culture debate use the same argument in euthanasia for infants they used for abortion - minorities and the poor will be impacted most. Abortion proponents said unwanted pregnancy impacted poor and minority women the most while opponents said it was going to be population control; people who were not wealthy would be more encouraged to exercise that choice. The demographic of women most likely to give birth to babies with defects became part of the culture war and would likely do so in this new front also.

The architect of  ‘the Groningen Protocol for neonatal euthanasia’ published in the New England Journal of Medicine in 2005, writes now that fears of a 'slippery slope' have not come to pass. The genesis of the protocol was a child with a painful skin condition whose parents asked doctors to end her suffering on humanitarian grounds. The doctors refused - ethics issues of the Hippocratic oath aside, they could be prosecuted for murder - and the child died a few months later. Dr. A. A. Eduard Verhagen says surveys showed doctors were ending the lives of children under such circumstances anyway, they were just hiding it.  Of 15-20 cases, only 3 were reported.

The protocol is specific. The baby must have a terminal prognosis, unbearable suffering, a confirming second opinion by an independent doctor, informed consent by both parents and the euthanasia must be performed according to medical standards. It still caused an uproar in a medical community that believes in saving lives and in using palliative methods rather than end-of-life solutions.

So what happened since then? Something neither critics nor supporters expected. Euthanasia plummeted.  Verhagen says there may still be some unreported but what likely happened was that more free ultrasounds meant early recognition of serious health problems so babies likely to be born suffering - and thus candidates for infanticide or euthanasia or whatever term you prefer - were aborted.  

One method used in palliative care that is not considered euthanasia (and so might account for why euthanasia is not more common) is withholding food and water in a dying baby. Verhagen argues that neonatal euthanasia is more humane than that and I agree.

Citation: A A Eduard Verhagen, 'The Groningen Protocol for newborn euthanasia; which way did the slippery slope tilt?', J Med Ethics 2013;39:293-295 doi:10.1136/medethics-2013-101402

NOTES:

(1) That is what NBC gets for spinning data by Save the Children. It's a fine organization in many ways but they can be in the hyperbole business too. They claim that 25% of American children 'go without', for example, but going 'without' means not going to preschool or having enough books or the right kind of health food - something no generation in America ever had as much of as they do now. In their defense, 90% of the money they raise goes to programs and premature births in developing nations are something that can be helped more cost effectively than people who take US or Europe costs and try to apply them in other regions realize.

It also needs to be noted that pre-term births in America have risen - and therefore the risks of deaths are greater - but a lot of that is because of increased maternal age, increased infertility treatments, etc. and other issues that made it possible for mothers with underlying health problems to not be pregnant. It's unfair to knock American health care for making it possible that women who once could not have children now can.  It should also be noted that while deaths happen in pre-term births, 96% of babies born at a period when it was a death sentence in the past now survive just fine.