End-of-life decisions regarding severely suffering newborn infants remain one of the most difficult issues in health care. In the last two decades the Netherlands have witnessed several developments regarding this issue. Developments such as the introduction of a statutory reporting procedure, the acquittal of two physicians charged with murder of a hopeless and unbearably suffering neonate, and the establishment of a national multidisciplinary expert committee serving as an advisory board to the Public Prosecutor, have shaped current Dutch understanding of the matter. New research results and policy developments on legal and medical aspects of neonatal end-of-life decisions in the Netherlands have vitalized the Dutch debate once more and provide good cause for further reflection on specific issues.

This chapter offers a reflection on several issues in current neonatal end-of-life practice in the Netherlands and discusses how these issues relate to the United Nations Convention on the Rights of the Child (CRC). First, the chapter explains how neonatal end-of-life decisions have developed as a children’s rights issue. Second, after a short overview of the applicable Dutch legal framework, it discusses some results of medical-empirical research on the practice end-of-life decisions in Dutch Neonatal Intensive Care Units (NICUs). Various questions raised by this research are subsequently examined against the background of the newborn infant’s inherent right to life and the norm of a child’s best interest. To other Contracting States to the CRC, this approach may offer a point of reference in defining their own position on the presented issues.

On January 31st 2004 the United Nations Committee on the Rights of the Child in Geneva (35th session) addressed end-of-life decisions in neonatology in its Concluding Observations on the Second Periodic Report of the Kingdom of the Netherlands. Remarkably, the Dutch government did not specifically provide any information on this topic to the CRC-Committee. Obviously, the CRC-Committee relied on its own informational sources in this regard, for instance by intensifying its contacts with the United Nations Committee on Civil and Political Rights. In its response to the Third Periodic Report of the Kingdom of the Netherlands under the International Covenant on Civil and Political Rights (ICCPR) [1], this Committee had already expressed concerns about the enforcement qualities of the Dutch Euthanasia Act, particularly since this Act addresses end-of-life requests by competent minors as well. In paragraph 6 of its Concluding Observations, the ICCPR-Committee also referred to the issue of end-of-life decisions in neonatology and asked the Dutch government to provide explanatory information on current practice in this area. By readdressing the issue the CRC-Committee has acknowledged the topic as a genuine children’s rights matter.

With regard to Article 6 CRC, the CRC-Committee also expressed concerns regarding the legal position of minors in the Dutch legislation on euthanasia and physician-assisted suicide (PAS). Furthermore, the CRC-Committee was particularly concerned about information that Dutch physicians had ended the life of newborn infants with severe abnormalities. As a result, the Committee asked the Dutch government to provide detailed information with regard to these issues and stressed that regulations and procedures concerning end-of-life decisions in neonatology must be in conformity with the child’s inherent right to life under Article 6 of the Convention.

However, in its Third Periodic Report of March 2007, the Dutch government neglected to provide the requested information, even though sufficient data on this issue were available. The Periodic Report merely recalled the establishment of the earlier mentioned national multidisciplinary expert committee and referred to the intention to induce doctors to be more open about the frequency and medical characteristics of neonatal end-of-life cases [2]. In consequence, the CRC-Committee reiterated its concerns in January 2009 (in its 50th Session) and urged the Netherlands to investigate the application of criminal law to the termination of life of neonatal children. The Committee subsequently repeated—in Recommendation 31(a)—its previous recommendation to frequently evaluate, and if necessary revise, the regulations and procedures on euthanasia and PAS, in order to ensure the special protection of children, including newborn infants with severe abnormalities, under Article 6 of the Convention and additionally pointed to the need to prevent non-reporting.

In November 2013 the Dutch government delivered its Fourth Periodic Report to the CRC-Committee. In this Report [3] the government confirms, in response to Recommendation 31(a), that regulations and procedures concerning neonatal end-life decisions require careful evaluation and, if necessary, revision. Furthermore, the government states that an evaluation of the procedure for reporting and reviewing cases in which the life of a newborn infant has been terminated, was commissioned in 2010. No other information is presented to the CRC-Committee.

It is unclear what drives this governmental reluctance to provide relevant data on medical neonaticide. Yet, it is a fact that the Netherlands are unwilling to share available information on neonatal end-of-life practice and legal research on the conformity of this practice with Article 6 CRC with the CRC-Committee, and consequently the children’s rights community as a whole. One might ask whether this suggests that country reports to the CRC-Committee are at risk of being political statements rather than reflections of a country’s truthful intentions to respect the rights of children. Still, to complement the CRC-Committee’s views the next paragraphs discuss opinions and considerations resulting from available Dutch research data on the matter. These data may show that some of the medical-empirical findings and related legal analyses give rise to criticize current Dutch neonatal end-of-life practice from a children’s rights perspective.

In order to fully understand the Dutch juridical perspective on neonatal end-of-life decisions and how it relates to Article 6 CRC, for instance, a short explanation of the applicable Dutch legal framework is presented below [4].

According to Dutch legal understanding the wording ‘end-of-life decisions in neonatal practice’ refers to several types of professional decisions in neonatal health care, leading to the death of a newborn patient. This wording is a collective noun that refers to decisions to withdraw or withhold medical treatment, to administer (or increase) sedative medication or—in extreme cases—to deliberately end a neonate’s life. In general, the neonatologist in charge is responsible for these end-of-life decisions.

A non-treatment decision remains without legal consequences provided such a decision is based on admissible professional grounds, such as inability to realize the treatment’s goal or the disproportionality between the ends and means of the treatment. If the grounds for a non-treatment decision are legally unsound or even negligent, the physician in charge can be held accountable. In appropriate circumstances this scrutiny may lead to disciplinary or even criminal charges against the physician. To deliberately end the life of a hopeless and unbearably suffering newborn child (=medical neonaticide) counts as homicide or murder under Dutch criminal law.

While earlier Dutch burial law required physicians to report cases of medical neonaticide directly to the judicial authorities [5], as of March 2007 [6] these cases must be examined by a national multidisciplinary expert committee [7]. This committee—composed of lawyer (=chair), an ethicist and three neonatologists—reviews such cases against special requirements of due care and provides a recommendation to the Public Prosecutor, who decides whether or not the physician in charge will be prosecuted. In cases where the physician has met these due care requirements and a successful appeal to a ground for impunity known as ‘defense of necessity’ (as in Article 40 of the Dutch Penal Code) is expected, no prosecution will be initiated.

In 2009 the expert committee received its first reported case [8]. The committee’s recommendation in this case declared the responsible physician’s performance to be careful and the Board of Procurators-General concluded that this physician had acted in accordance with the due care requirements. In consequence, the Public Prosecutor did not begin criminal proceedings against the physician.

In 2005 the so-called “Groningen Protocol” [9] was accepted by the Dutch Paediatrics Association as a guideline for physicians confronted with situations in which medical neonaticide might become inevitable. The document contains a list of special requirements of careful decision making. It originates from the content of the statutory reporting procedure, from a governmental report published in 1997 and considerations articulated by the district and appellate courts in the criminal cases of Prins and Kadijk in 1995 and 1996.

In the summer of 2013 the Royal Dutch Medical Association (RDMA) issued a Position Statement on the matter. Its content will be discussed in paragraph 6.

In recent years, the issue of neonatal end-of-life decision has been researched extensively in the Netherlands, from a legal as well as a medical-empirical perspective. An important part of this research was conducted by scholars at the University Medical Center in Groningen.

At Groningen, it is generally understood that in order to deal effectively with issues about end-of-life decisions in neonatology in general and its permissibility in particular, legal and medical scholars need to collaborate instead of opposing one another. This belief in the need for collaboration resulted in joint research.

In my contribution to this research, I studied the meaning of the child’s inherent right to life (Article 6 CRC) and its right to health care (Article 24 CRC) in the context of neonatal end-of-life decisions. Additionally, I focused on whether the legal prohibition of disability discrimination mentioned in Article 2 (1) CRC needs special consideration in the decision-making process. In medical practices in the USA, the UK, Germany and also the Netherlands disabled neonates who suffer from severe abnormalities are at risk of being discriminated against on the basis of their disability and could be wrongfully limited in the enjoyment of their fundamental rights when end-of-life decisions—particularly non-treatment decisions—arise.

I concluded that proper notice of the legal prohibition of disability discrimination during the decision making process can ensure the equal protection of the right to life and to health care of the severely suffering neonate when end-of-life decisions occur. In those situations, application of a special scheme of reference derived from the concept of “objective justification” is discrimination jurisprudence, can help to guard against such decisions being unlawfully based on an infant’s disability (or disabilities) [10].

Subsequently, the departments of health law and of paediatrics at the University Medical Center Groningen studied current end-of-life practice in all 10 Dutch Neonatal Intensive Care Units (NICUs). Specific issues in this practice were defined and its characteristics were analyzed. The findings were then reviewed with respect to current Dutch legal understanding and considered in relation to norms of international human rights law.

In the next paragraph some of the significant findings and reflections on three issues are presented: (1) the interpretation of “hopeless and unbearable suffering”, (2) the position of parents in deciding what’s best for their newborn infant, and (3) the use of particular medication regimens.

Between October 2005 and September 2006 Verhagen c.s. analyzed the medical files of 359 neonates who died in Dutch NICUs [11]. In 340 of these 359 cases a decision to withhold or withdraw treatment preceded death. The decision to withdraw life-sustaining treatment (mostly withdrawal from mechanical respiration) was made in 294 cases. Death resulting from withholding other treatment occurred in 46 cases, while deliberate ending of life officially took place in one case.