The Groningen Protocol Revisited
Click here for the complete essay.The latest issue of the New England Journal of Medicine published an editorial on "The Groningen Protocol". This is the "unofficial" protocol used by the Dutch medical community to decide when it's appropriate to euthanize infants. The article was written by Dr. Eduard Verhagen MD, JD and Dr. Pieter Sauer MD, PhD, the clinical director and chairman respectively of the pediatrics department of the University Medical Center Groningen where the protocol was created.
In it, they describe the conditions under which they feel euthanasia is justified (despite the fact that the Netherlands' euthanasia statute doesn't apply to children under the age of 16). The actual homicide statute is not clearly described in the article other than this statement:
"In the Netherlands, as in all other countries, ending someone's life, except in extreme conditions, is considered murder."
They go on to say "A life of suffering that cannot be alleviated by any means might (my emphasis) be considered one of these extreme conditions." No proof is offered that this statement is founded in Dutch law.
The Groningen Protocol is then described which summarizes circumstances under which euthanasia may be considered: any infant that is nonviable and will surely die shortly, infants born with severe disability that will result in poor quality of life if they survive the ICU and infants with a poor prognosis with unbearable suffering.
The authors recognize that in these settings, cessation of life sustaining care and not initiating such care are generally acceptable to American and most European communities. The Dutch however, believe that actual euthanasia is, in these cases, acceptable.
They describe a complicated mechanism whereby the decision to euthanize is arrived at. It is noteworthy that the parent's preferences must be followed and that a number of independent providers must be involved. The fact that the patient cannot be part of the decision doesn't appear to pose any unique difficulties.
Several issues are problematic to me.
- Dutch law doesn't appear to be on the side of these decisions. In fact, according to the protocol, the local district attorney must be notified after the fact with the understanding that they have the prerogative of filing homicide charges or not. That no such charges have ever been filed is cited to support the author's opinion that no legal or ethical rubicon has been crossed.
- They cite some statistics derived from death certificates and physician surveys that prove that a large proportion of death certificates involving such cases of euthanasia are filled out illegally (attributing the cause of death to "natural causes"). For from suggesting a national consensus, to me, this demonstrates national ambivalence.
- One of their main criteria for euthanasia is "unbearable suffering" due to pain. To me, the solution is more aggressive analgesia. By whatever standards it is measured in an infant (type of cry, restlessness, heart rate, etc.) there's really no such thing as intractable pain. Euthanasia seems unnecessary.
- When patients are able to make end-of-life decisions for themselves, how many of them opt for suicide? Many terminal patients and family members have asked me to withdraw life support but I've never in my career had a patient or family actually ask me to kill them. I don't have data on this but I seriously doubt that my experience is unique. So why should the default in these circumstances be euthanasia if other people so decree it and the patient can't decide for himself?
I personally have real problems with a euthanasia policy but much of that may simply be due to my personal belief system. However, euthanasia in children as described in this article seems fraught with a lack of internal consistency. The phrase "slippery slope" reverberated more strongly. The authors, who helped develop this protocol seem on the defensive, as if they realize that they're treading on very unsteady ground:
"During the past few months, the international press has been full of blood-chilling accounts and misunderstandings concerning this protocol."
I think the world understands this policy quite well and I hope that nothing like it is adopted here. To me, the Groningen Protocol diminishes the human dignity in all of us especially in those least able to speak for themselves.