Neonatal Euthanasia and

the Groningen Protocol

Imagine, for a moment, that you are a physician leading the treatment of an infant patient. You have diagnosed the patient with epidermolysis bullosa (EB) after repeated testing, observation, and discussion with your colleagues. This disease has horrifically affected the patient, causing severe blistering across the entire body. Obviously, the infant is in extreme pain that is minimally eased through medication. With all of the information and your expertise, you expect the child to live no more than a few months in this condition. Now imagine that the parents of the patient come to you and say that they believe the palliative treatment to be futile and ask for your assistance in hastening their child's death so as to prevent unnecessary pain from befalling their child. Is it ethical to comply with this request?

Groningen, NL

Photo by Alex Waltner/Swedishnomad.com

This situation is not too far off from the one Dutch pediatrician Dr. Eduard Verhagen found himself in in 2001. At the time, there was little guidance as to how physicians should handle euthanasia requests for neonatal patients or patients 12 years of age and younger (euthanasia is permissible in the Netherlands for patients older than 12 years). The medical staff in Verhagen's case cautiously decided not to actively end the patient's life, and the infant died two months later. In response to this moral dilemma, Verhagen and Pieter Sauer, along with a committee of healthcare professionals, developed the Groningen Protocol--a collection of requirements and considerations designed to assist healthcare providers in determining when it is permissible, in their point of view, to perform neonatal euthanasia by outlining criteria and clarifying information ffor healthcare providers.

The Groningen Protocol contains five medical requirements that should be satisfied to allow for the euthanasia (although this does not entirely prevent prosecution): (1) The diagnosis and prognosis must be certain, (2) Hopeless and unbearable suffering must be present, (3) The diagnosis, prognosis, and unbearable suffering must be confirmed by at least one independent doctor, (4) both parents must give informed consent, and (5) the procedure must be performed in accordance with the accepted medical standard [1]. In addition to these five requirements, there are also clarifications provided to help guide and facilitate the process such as noting what should be officially documented, describing alternative treatments, and recording how consent was obtained [1].

Syringe needle with drop of liquid at the tip close to the the vial

Despite its relative acceptance in the Netherlands, the Groningen Protocol has been the subject of much controversy internationally and has come under fierce criticism. Wesley J. Smith, Chair and Senior Fellow at the Discovery Institute Center on Human Exceptionalism, described the protocol as "legitimizing eugenic infanticide" [2].Many critics point to the condition of "hopeless and unbearable suffering" as being too subjective or outright impossible for infants to possess. Many philosophers and ethicists hold that true suffering possesses a cognitive dimension related to one's concept of their self and being that does not take form until childhood [3]. Since infants have no concept of themselves, they cannot suffer even though they can feel pain, rendering the second criterion unfulfilled. Defenders of the Protocol, however, argue that the distinction between pain and suffering is trivial and that experiencing great pain qualifies as suffering. This disagreement is more than a semantic debate; it possess real-world implications regarding who can suffer, and thus, who can be euthanized.

Beyond the pre-requisite of suffering, the qualification that this suffering be "unbearable" also poses ethical problems. Eric Kodesh, a pediatric hematologist and author, writes that there is no accurate way of measuring what constitutes unbearable suffering as opposed to "regular" suffering, particularly when the patient cannot communicate. Moreover, what a single patient may deem as unbearable at one point in time, they may later find it tolerable [4].

Opposing Viewpoints

We should be skeptical of the justification provided in the Groningen Protocol. The path such reasoning takes us down opens the door for discrimination against the disabled and allows too much subjective interpretation on the part of the physician and the family. When the Groningen Protocol was being devised, the committee looked at 22 cases of neonatal euthanasia, all of which involved an infant with a severe form of Spina Bifida. Spina Bifida is not inherently fatal; in fact, many adults currently live with this condition and lead fruitful and meaningful lives. Given the fact the protocol does not require an infant to have a fatal diagnosis, many infants may be subject to euthanasia who might otherwise lead lives which are meaningful to them. Moreover, there is a concern parents who are hesitant to raise a disabled child might use this option instead of alternatives. Although, it should be noted that the number of cases of neonatal euthanasia has decreased since the implementation of the Groningen Protocol, most likely due to prenatal screening and subsequent abortion [5]. The complication of needing informed consent from parents is also troublesome. Some ethicists argue that informed consent is only truly capable for a patient making autonomous decisions regarding their own health and that surrogate decision making only concerns itself with permission as opposed to consent [4].

Wesley J. Smith

"In the Netherlands, infants are killed because they have birth defects, and doctor justify the practice"

Click to read Wesley Smith's testimony to the Senate judiciary subcommittee on the Constitution, Civil Rights, and Property Rights criticizing euthanasia and neonatal euthanasia (2006)

Peter Singer

"I believe the Groningen protocol to be based on the sound ethical perception that the means by which death occurs is less significant, ethically, than the decision that it is better that an infant’s life should end."

Click to read Peter Singer's Op-Ed in the Los Angeles Times defending the Groningen Protocol (2005)

Los Angeles Times preview of Peter Singer's article on the Groningen Protocol

In any case, the situations in which the Groningen Protocol may be implemented are hardly a binary of euthanizing the patient or allowing them to suffer in extreme pain. Physicians and families have options for how to deal with these cases. First, the rule of double effect provides a moral justification for providing such a high dose of pain medication that it might end the patient's life, even though this is not the intention. This is justified on the basis that the physician is attempting to relieve pain rather than intentionally ending a life [6]. Second, treatment may be withdrawn or withheld in certain circumstances if the providers deem it medically inappropriate. effectively ending the patient's life without the use of a lethal agent.

It would be impossible to spell out an exhaustive list of criticism of the Groningen Protocol, but I hope that by listing a few of the major ethical dilemmas that it causes, one can understand why this protocol should not be implemented. While I believe the Groningen Protocol to be unnecessary and immoral to use, I recognize that the advocates of it are coming from a place of good will. No one wishes to be placed in these circumstances, and those who believe that terminating the patient's life is the best course of action are doing so out of a misguided notion of beneficence, advocating for, what in their mind, is the patient's best interest. As the debate continues over euthanasia and neonatal euthanasia, the Groningen Protocol serves, if nothing else, as a first step into navigating the difficult ethical landscape that clinicians, patients, and families must navigate every day.