Ending the Life of a Newborn: The Groningen Protocol

Hilde Lindemann; Marian Verkerk

The Hastings Center Report. 2008;38(1):42-51. 

In This Article

Lingering Problems with the Protocol

While criticisms based on misreadings of the protocol are easily cleared up, other concerns still remain. These have largely to do with quality-of-life judgments and with the role of the parents.

The protocol requires that "hopeless and unbearable suffering" be present. But hopelessness worries some critics of the protocol because it seems far too subjective for ending the life of another human being.[23] My reason for losing hope might be your reason to press on; what plunges me into hopelessness may stiffen your spine.

We believe that the brunt of this criticism can be deflected by considering the Dutch word from which the English one was translated. That word is uitzichtloos, which literally means "outlook-less," or, in better English, "without prospect." While not all are hopeful who have reason to hope, and some continue to hope when all hope is gone, agreement can be reached concerning a baby's prospects for improvement. Parents and physicians alike may hope the baby will get better while agreeing that there is no prospect of it. It's true that the determination that there is no prospect is a judgment, not a self-evident fact, but it is a judgment that will have been based on clinical data and medical expertise, and it will have been confirmed by a second, independent opinion.

The harder quality-of-life judgment to establish is that of unbearable suffering.[24] How can I know what you cannot bear unless you tell me, and if you're a newborn baby, how can you tell me? Unbearable, like hopeless, strikes some critics as an unacceptably subjective criterion. Nor does suffering fare any better. It has become a bioethical commonplace to distinguish suffering, which is subjective, from pain, which is not. Pain, it is said, is "the awareness of reports of tissue damage or threat of tissue damage in the central nervous system."[25] It is a sensation caused by physiological phenomena. Suffering can be distinguished from pain, according to Eric Cassell's well-known formulation, as "the state of severe distress associated with events that threaten the intactness of the person."[26] It is awareness of the disintegration, or the danger of disintegration, of one's sense of self.

If one accepts this distinction, the difficulty with the protocol becomes obvious: infants, whose psychologies are not yet complex enough to produce a sense of self and who do not experience themselves as intact persons, are incapable of suffering. As the objection has it, criteria based on suffering, if they are to be used at all, must be reserved for euthanasia because criteria of this kind could only be applicable to people with self-concepts and the ability to report what they feel.[27]

While Cassell's distinction can be most helpful in some contexts, we see no particular reason to follow it here. There is a perfectly ordinary sense in both English and Dutch in which one can suffer pain—just as one can suffer humiliation, cold, fools gladly, or the consequences. Babies, being babies, are severely limited in the range of things they can suffer, but they can certainly suffer pain, and to excruciating degrees. These degrees are observable and measurable and do not require a self-concept or self-reporting to be accurately assessed. In the absence of untenable assumptions about the impossibility of knowing what is in another person's mind, the objection about the subjectivity of the language of unbearable suffering does not seem persuasive, at least with regard to pain.

The trouble, though, is that the protocol has been taken to apply not only to pain, but also to other kinds of serious and unrelievable conditions—total lifelong dependency, for example, or lack of any capacity for communication, or progressive paralysis resulting in total immobility. The protocol thus leaves room for cases in which the suffering will take place in the future. This forward-looking feature of the protocol is justified on the grounds that it is inhumane to keep a baby alive until it begins to experience intolerable suffering.

It also raises two sorts of difficulties. The first has to do with whether physicians ought to be in the business of mounting lethal preemptive strikes before any actual suffering has occurred. In September 2006, the Ministry of Health Care empanelled the review committee we mentioned earlier—a group of experts (a lawyer, an ethicist, and several physicians) charged with retrospectively assessing cases in which physicians have ended the lives of severely impaired newborns. Once the committee has spoken, it sends its judgment to the district attorney, who has already received a report of the death. The district attorney, on the basis of the review committee's recommendation, then decides whether to act on the case. Thus, the review committee here acts solely in an advisory capacity. It differs in that respect from the regional euthanasia committees, which, because they report cases of improperly administered euthanasia to the district attorney, serve in a prosecutorial capacity. But while the review committee for ending the lives of infants does not wield the same power as the euthanasia review committees, it will, if it thinks that the physician has acted improperly, send its judgment to the Inspector of Health Care—the government agency whose U.S. analog is the Joint Commission on Accreditation of Healthcare Organizations and which, like that body, has the power to shut the hospital down. The committee uses roughly the same due care criteria as the euthanasia review committees, adding to those criteria the particular requirements of the Groningen Protocol. However, it is not yet clear whether the intense, unrelievable suffering of the newborn must be actual, or whether intense, unrelievable suffering in the near future is also acceptable grounds for terminating the newborn's life.

It is possible that the committee will come down on the side of caution, ruling that only actual suffering provides an acceptable reason.[28] But that, we think, would be a pity. We can see no reason why, in at least some cases, the more responsible course of action might not be to end an infant's life in advance of intense, unrelievable suffering it will otherwise surely have to endure. For babies who either cannot be treated at all or who face a future of one surgery after another, none of which is likely to improve the quality of their lives to any marked degree, the prevention of later suffering that cannot be alleviated would seem to be just as morally valuable as the relief of present unbearable pain. It is of course true that some of these babies—those, for example, who face complete lifelong dependency—might, if kept alive, judge as adults that their lives had been worth something to them. Much would depend, one supposes, on how much pain and other kinds of suffering they had to endure to get to adulthood. But that consideration is no reason to proscribe all life-ending interventions on the basis of future suffering.

It is a matter of the greatest importance that more research be conducted to better determine what it is to live with conditions that cause serious suffering other than pain. In the absence of such research, physicians might succumb to the biases of the able-bodied, who tend to think disability is much worse than disabled people actually find it. That said, the fact remains that on rare occasions, a doctor can find herself in a situation in which she has good reason to believe that her obligation to prevent suffering outweighs her duty to protect her newborn patient's life.

The second concern raised by the protocol's stance that physicians may base end-of-life decisions on future suffering is the morally hazardous nature in general of making quality-of-life judgments for others. Aid in dying for patients who rationally request it can be justified by appealing to the moral concept of respect for autonomy. Such patients have weighed the quality of their current state against what they have to look forward to, and they decided for themselves that the game is no longer worth the candle. They are in the best position, both morally and epistemically, to intentionally lay down a burden that has become too heavy for them. Deciding for others that they have (or will have) an unacceptable quality of life is quite another matter. It seems the height of arrogance to conclude that someone else's life is not worth living, and even worse to deprive the person of all her experiences, possibilities, and relationships on the basis of that conclusion.

On the other hand, where there is a socially shared understanding that death is not the worst thing that can befall a human being, quality-of-life judgments cannot be evaded. Advances in medical treatment have meant that more and more deaths in developed nations must be negotiated. These negotiations often require family members, in consultation with health care professionals, to decide when an uncomprehending patient's life is no longer of value to him. In the United States, where fully one-fourth of all people die in intensive care units,[29] these decisions on behalf of others routinely result in withdrawing or withholding further life-sustaining treatment so that the patient may die. In the Netherlands, too, there is a shared understanding that families may need to pass judgment on a loved one's quality of life so that life-sustaining treatment can be refused or withdrawn.

Where the Dutch go further than other countries is in their shared belief that even newborns have a fundamental interest in not prolonging a life that is or will become an intolerable burden to them. This understanding is buttressed by a consensus—within the National Association of Pediatricians, for example, but also in the wider community—on some criteria regarding quality of life, including the amount of suffering that is to be accepted, the capacities for communication (nonverbally as well as verbally), the capacities to live a self-supporting life, and the dependency on care institutions. It is one of the harsh realities of twenty-first-century medicine that quality-of-life judgments must be made. What we must not do is pretend that we do not already make them, and that there is somehow something morally different about doing it for a newborn baby.

One might object that even if we do make quality-of-life judgments for others, there is surely a moral difference between killing and letting die. In fact, sometimes there is, and sometimes there isn't. As James Rachels has famously argued, whether you drown your six-year-old nephew in the bathtub so that you can collect his inheritance or merely refuse to intervene as he slips and hits his head and falls face down into the bathwater, either way you are a murderer.[30] We agree with Rachels that actively ending a life can sometimes be more humane than waiting for the person to die, and that in the desperate cases where death does not come of its own accord to end unendurable suffering, the morally right thing to do is to summon it.

We realize that this is controversial. The recent report of the Nuffield Council argues that permitting doctors to end neonatal life deliberately would likely not only cause psychological harm to the doctors who do it, but also have a negative impact on how the medical profession is perceived more widely. Parents in particular might lose their trust in doctors.[31] Again, we think that this argument underestimates the difficulty doctors themselves experience when they come to their decisions. Every doctor will testify that the deliberate killing of a child is very hard. But in these cases, a conflict of duties has been judged to exist, and the need to relieve the baby's severe suffering has outweighed the need to protect its life.

Another lingering concern has to do with the parents' role in these life-ending decisions. Because parents bear the responsibility of caring for their children and may find the care of severely impaired children burdensome in the extreme, the objection has been raised that the parents of such babies have a conflict of interest: they will be tempted to kill the baby so they don't have to look after it.[32]

Two points are worth making here. First, "parents" is generally a euphemism for "mothers." In the Netherlands as everywhere else, by far the greatest amount of responsibility for the care of infants is assigned to their mothers, regardless of whether the father is present in the household or the mother works full time outside the home. When infants are disabled, the mother is almost always the full-time caregiver.[33] Yet who is worried about conflict of interest? Of the five authors who to our knowledge have voiced this objection—Alan B. Jotkowitz, Shimon Glick, Frank A. Chervenak, Laurence B. McCullough, and Birgit Arabin—all but one are men. Because childcare (let alone familial care of badly damaged children) is socially disvalued and heavily gendered, it is unseemly, to say no more, for those who are neither expected nor likely to do it to attribute malign intentions to those who must.

This is, of course, an ad hominem argument. But it is also an appeal to attend to the social context in which the objection is raised, and to the position of social immunity from maternal responsibility enjoyed by those who raise it. We take seriously the "epistemology of ignorance"[34] that allows some people not to have to notice social arrangements that are uncomfortable or awkward: often, what social privilege amounts to is not being forced to acknowledge things that it would be inconvenient to bear in mind. And we suspect that this is what has happened here. The criticism that the protocol allows parents to wiggle out from under the responsibility to look after their disabled children strikes us as both unmotivated and mean-spirited: it does not take seriously either children with disabilities or the mothers who care for them.

The second point is that parental conflicts of interest arise routinely, yet responsibility for the care of the young continues to be assigned to their progenitors. Absent evidence to the contrary, parents are trusted not to abuse or neglect their offspring despite the many occasions on which it would be convenient or financially remunerative to put their own interests first. We do not assume that parents shouldn't be trusted with the care of their five-year-old simply because they could leave the child untended while they go out for a night on the town, nor do detectives follow a new mother home from the hospital to make sure she doesn't skimp on her baby's formula to avoid a dip in her disposable income. To create public policy on the assumption that parents are likely to sacrifice their desperately ill child's interests to their own would be to overturn deep-seated, widely shared understandings about who is responsible for the care of the young. Concern about conflict of interest in parents' making end-of-life decisions of any kind for their children needs to be specific and substantial, not general and notional.[35]

Parents play a role in these life-ending decisions that no one else—not even the most caring physicians or dedicated nurses—can fill. They are ordinarily the initiators and major contributors to the long process of shaping their children's selves, enveloping their children with their own "thick" normative framework and in that way giving them some rich and comprehensive notion of what matters in life. Because they so directly mark the child in its first few years when children are at their most receptive, parents provide a window into the values and settled preferences, the particular outlook on life, that might well characterize the child when grown. It is a tiny window, smudged and dim, but it is the closest glimpse we have into the assessments their baby might itself make about the quality of its life.[36] When parents make decisions about the treatment of babies who are very badly damaged, then, they do not and should not decide on the basis of some impersonal and impartial best-interests standard. They do it out of an intermingling of selves that marks this particular baby as nested within the value structure of these particular parents, uniquely situated to judge what quality of life their child would find unacceptable.

At present, parents in the Netherlands may request that their severely impaired babies' lives be terminated, but their request does not automatically prevail. However, if the doctors believe that the child's life should be ended but the parents do not agree, the parents' wishes are honored. One reason the parental role is limited to giving or withholding consent may be that things happen very quickly in a neonatal intensive care unit: a baby's condition can change drastically in a matter of hours, so that while the health care professionals remain abreast of the changes, parents often have a difficult time keeping up.[37] They are, therefore, not always in the best epistemic position to assess whether it is time for an end-of-life decision to be made. A second reason may be that because physicians are the ones who actually end the life of the baby, the decision to do so must be a joint one.

Nevertheless, we believe that because parents typically love all their children, regardless of the children's medical needs, and because they are especially well placed to make judgments about the acceptability of a given quality of life for their babies, it is important to include parents in the decision-making process. Moreover, it is important to take parents' interests, wishes, and fears very seriously. Too often in the United States, family members are told that they must not consider anything but the interests of the patient; to do otherwise is to court suspicion of neglect or abuse. Indeed, in both the United States and the United Kingdom, this refusal to countenance informal caregivers' concerns seems to be a permanent fixture of bioethics.[38] In the Netherlands, they arrange these matters differently. Because parents feel that they are equal partners in the decision-making process, they seem content to let the final decision rest with the physicians who are directly responsible for their babies' care.

As our defense of the protocol suggests, we think it is essentially sound, though no more foolproof than any set of guidelines can be. Determining in an instant case whether the protocol is applicable will always require judgment, and because the stakes are inordinately high no matter what is decided, the judgment must be made with fear and trembling. That said, however, we believe that transparency in the deliberations concerning the ending of an infant's life—which is just as important as it is in the deliberations concerning euthanasia in adults—is adequately promoted by the protocol's requirements.

Concerning the larger question of whether the practice for which the protocol was developed can be morally justified, we think it can—in the Netherlands, at any rate. When a tragically impaired infant is born into a society that is hospitable to its children, offers universal access to decent health care, and promotes an ethos among its citizens whereby they look after each other as a matter of course, we believe that the doctor's ending the baby's life could be the best, most caring response.

As we wrote this paper together, it was brought home forcibly to each of us, at different times, just how deep the cultural and social divide is between the Netherlands and the United States. Although we are tolerably well acquainted with each others' countries and have worked together for a number of years, we found that we were continually making assumptions that the other didn't share, which resulted in a fair amount of talking past each other. For example, it took four extended conversations before we were satisfied that we had spelled out the differences between groups 1, 2, and 3 in a way that would be fully intelligible to an American audience. This experience served to strengthen our jointly held conviction that if bioethics is to do its proper work of carefully describing and assessing any particular biomedical practice, it must provide an empirically saturated (read: culturally nuanced) and socially situated analysis of that practice. Sometimes, as in the present instance, this requires translation—of cultures as well as concepts. And because concepts take on whatever meaning they do against a backdrop of what Wittgenstein called "forms of life,"[39] we wish to repeat that while we find it morally permissible for Dutch doctors to end the lives of severely impaired neonates according to the requirements of the Groningen Protocol, we are not prepared to suggest that American physicians should follow suit. The United States has its own forms of life, and not all of them support this way of caring for desperately ill infants when there's nothing else to be done.

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