Neonatal euthanasia is no longer an abstraction discussed in ethics classes. Today it is actively practiced and promoted in The Netherlands. Previously, the authors have critically analyzed this practice and proposed a protocol to guide the decision-making process regarding active euthanasia of newborns Citation[1]. The purpose of this editorial is to address the ethical challenges of neonatal euthanasia as represented in the recently proposed Groningen Protocol Citation[2]. When the Protocol has been invoked to perform euthanasia it has, in almost all cases, involved infants with spina bifida Citation[2].
The Groningen Protocol requires certainty about diagnosis and prognosis – a prognosis of ‘hopeless and unbearable suffering’ – confirmation of this prognosis by an independent physician, parental consent and performance of the procedure in accord with the accepted medical standard. The Protocol goes on to provide additional detail regarding the information needed to support and clarify the decision about euthanasia Citation[2].
It is important not to mince words. In the Groningen Protocol, ‘euthanasia’ means the direct killing of the neonatal patient by the physician, not the withholding or withdrawal of life-sustaining treatment Citation[3]. Dutch medicine has pioneered euthanasia in adults Citation[3,4].
There are multiple ethical defects in the Protocol that lead the authors to condemn its use in clinical practice. First, the Protocol does not provide an explanation of the role of surrogate consent by parents for neonates. The primary ethical relationship of family members and parents to a patient is one of obligation; namely, to protect and promote their health-related and other interests. The burdens on parents of subsequent care of their child are legitimate ethical considerations, but secondary to parents’ fiduciary obligations to their child Citation[5]. Parental rights of decision making are justifiably constrained by their ethical obligation to authorize medical treatment that is reliably expected to benefit the patient clinically Citation[6].
Second, the Protocol does not provide ethically justified clinical criteria to define the circumstances in which nonsurvival is an acceptable alternative to survival. Such clinical ethical criteria are essential because, as the patient’s fiduciaries, the physician and parents alike face a steep burden of proof to justify killing a patient – a burden of proof that the Protocol fails. This is not an impossible task: the burden of proof can be met by demonstrating that killing the patient would not violate either the physician’s or the parent’s fiduciary obligations. McCullough and Chervenak have argued elsewhere that there are ethically justified criteria for when the beneficence-based obligation to preserve life has ended: death or absence of cognitive developmental capacity are either certain or near-certain outcomes of the diagnosis. In both cases, the fetal patient’s condition ‘is tantamount to death, and so in beneficence-based clinical judgment, causing death is an acceptable outcome’ Citation[7,8]. They put forward paradigm fetal diagnoses that meet these criteria, including anencephaly, holoprosencephaly, renal agensis, trisomy 13 and trisomy 18 Citation[7,8].
Spina bifida is a paradigm case of a diagnosis that does not meet these criteria. It is not uniformly life-taking and normal, even superior, intellectual function are among its clinical outcomes Citation[7,8]. It is possible that a patient with spina bifida could meet our criteria, however the reason for this would be the presence of an associated or complicating condition and not spina bifida per se. It is essential that these associated or complicating conditions be explicitly identified, their prognoses be established on the basis of the best available evidence, and those prognoses be evaluated against ethically justified criteria for establishing that killing the patient is consistent with the physicians’ and parents’ fiduciary responsibility. The Protocol lacks this clinical and ethical precision.
Third, the Protocol lacks an ethical analysis of burdens of handicapping conditions on others when it invokes the category of ‘predicted lack of self sufficiency’ Citation[2]. A variable spectrum of handicapping conditions is associated with spina bifida, which may cause burdens on parents and society at large. Such burdens are ethically distinct from the physician’s and parent’s fiduciary obligation to protect and promote the patient’s health-related interests Citation[7,8]. Prominent theories of justice emphasize equality of opportunity for human experience and development, meaning that meeting such burdens by society is ethically obligatory Citation[9].
Fourth, the Protocol’s key clinical terms are presented in a strategically ambiguous fashion. The Protocol does not define ‘quality of life’ or its key components such as ‘hopelessness’ and ‘unbearable suffering’. The concept of quality of life comes into medical ethics from the social sciences and means the ability to engage in life tasks and gain satisfaction from doing so. This concept can be applied clinically only to patients who have the cognitive and physical capacity to identify and engage in life tasks and who have developed values on the basis of which they then determine whether engaging in those life tasks is satisfying to them. All infants, because they lack sufficient cognitive capacity, are incapable of identifying life tasks, engaging in them or developing values as the basis for making judgments about satisfaction Citation[10]. Moreover, during infancy, spina bifida has not yet become physically disabling; it cannot diminish an infant’s current quality of life even it were justified to apply this concept to infants.
The Protocol really concerns predicted quality of life. There are two major problems with such prospective judgments about quality of life of disabled children. The Protocol fails to consider recent reports that the self-reported quality of life of disabled children does not differ from that of nondisabled children Citation[11]. In addition, the Protocol nowhere addresses the documented phenomenon that healthcare professionals underestimate the quality of life of disabled persons when compared with self-reports Citation[12], calling into question the reliability of physicians’ prognostic judgments about quality of life in these cases.
Suffering is a complex psychosocial phenomenon in which an individual experiences the unwanted or unwelcome impediments on his or her ability to realize intentions, desires and hopes for the future. Pain, by contrast, is the awareness of reports of tissue damage or threat of tissue damage in the CNS. Pain may cause suffering, but not in all cases. Suffering can be accompanied by pain, but not in all cases. To conflate pain and suffering, as the Protocol does, involves a major confusion in the use of concepts from psychology and physiology.
Having confused suffering and pain, the Protocol invokes the concept of unbearable suffering but nowhere explains what this might mean. The Protocol allows parental response to their child’s condition to be included in the concept of unbearable suffering. This means ‘the role of the parents is paramount’ in both the concept and its clinical application Citation[2]. In other words, a parental desire not to have a disabled child can be taken as authoritative in reaching a clinical judgment that the child experiences or will experience unbearable suffering. If unbearable suffering means unbearable pain, the Protocol is still defective. Infants, to be sure, might be able to experience unbearable pain, but spina bifida does not cause such pain.
Finally, the Protocol ignores the contemporary clinical fact that high-quality obstetric ultrasound examination can detect spina bifida through examination of the fetal spine. Two decades ago, Nicolaides et al. made a landmark contribution by demonstrating that easily detectable cranial signs of spina bifida were present in almost all cases Citation[13]. Nearly two decades ago Chervenak and McCullough argued that access to quality ultrasound examination involves an essential exercise of pregnant women’s autonomy and, therefore, should be funded Citation[14,15]. It is surprising that, in a country as medically sophisticated and as wealthy as The Netherlands, the routine offering of quality second trimester ultrasound has not been the common practice until very recently. Scholtenhuis et al. reviewed the experience in The Netherlands from 1996 to 1999. Out of the 113 diagnosed cases of spina bifida among newborns during this time period, only 38 (33.6%) were diagnosed before 24 weeks’ gestation. A total of 35 of these women (92%) elected for a termination of pregnancy Citation[16]. This exercise of autonomy by pregnant women suggests that the clinical ethical controversies created by the Groningen Protocol can, in large measure, be obviated by provision of routine, high-quality obstetric ultrasound examinations. The routine use of ultrasound in the second trimester was endorsed by the Dutch Organization of Obstetricians and Gynecologists, as well as the Dutch Minister of Health in November 2005.
These positive developments should greatly reduce the need for the Groningen Protocol but they do not change our fundamental ethical conclusions. The Groningen Protocol should be rejected because it lacks the ethical justification required to establish it as a responsible guideline in the care of newborn infants.
Financial & competing interests disclosure
The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.
No writing assistance was utilized in the production of this manuscript.
References
- Chervenak FA, McCullough LB, Arabin B. Why the Groningen Protocol should be rejected. Hastings Cent. Rep.36, 30–33 (2006).
- Verhagen E, Sauer PJJ. The Groningen Protocol – euthanasia in severely ill newborns. N. Engl. J. Med.352, 959–962 (2005).
- Emanuel EJ. Euthanasia: historical, ethical, and empiric perspectives. Arch. Intern. Med.154, 1890–1891 (1994).
- Blijham GH, Tjabbes-Meijer L. Euthanasia and assisted suicide respecting the patient’s will. In: Health and Health Care in The Netherlands: A Critical Self-Assessment of Dutch Experts in Medical and Health Sciences. Schrijvers AJP, Kodner LD (Eds). Elsevier Gezondheitszorg, Maarssen, The Netherlands, 285–291 (2002).
- McCullough LB, Chervenak FA. Ethics in Obstetrics and Gynecology. Oxford University Press, NY, USA (1994).
- Committee on Bioethics, American Academy of Pediatrics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics95, 314–317 (1995).
- Chervenak FA, McCullough LB, Campbell S. Third trimester abortion: is compassion enough? Br. J. Obstet. Gynaecol.106, 293–296 (1999).
- Chervenak FA, McCullough LB, Campbell S. Is third-trimester abortion justified? Br. J. Obstet. Gynaecol.102, 434–435 (1995).
- Sen A.Inequality Reexamined. Harvard University Press, MA, USA (1992).
- McCullough LB. Neonatal ethics at the limits of viability. Pediatrics116, 1019–1021 (2005).
- Tyson JE, Saigal S. Outcomes for extremely low-birth-weight infants: disappointing news. JAMA294, 371–373 (2005).
- Leplege A, Hunt S. The problem of quality of life in medicine. JAMA278, 47–50 (1997).
- Nicolaides KH Gabbe SG, Campbell S, Guidetti R. Ultrasound screening for spina bifida: cranial and cerebral signs. Lancet2, 72–74 (1986).
- Chervenak FA, McCullough LB, Chervenak JL. Prenatal informed consent for sonogram: an indication for obstetric ultrasonography. Am. J. Obstet. Gynecol.161, 857–860 (1989).
- Chervenak FA, McCullough LB. The threat of the new managed practice of medicine to patients’ autonomy. J. Clin. Ethic.6, 320–323 (1995).
- Scholtenhuis MAG, Cohen-Overbeek TE, Offringa M et al. Audit of prenatal and postnatal diagnosis of isolated open spina bifida in three university hospitals in The Netherlands. Ultrasound Obst. Gyn.21, 48–72 (2003).