Hope in the Neonatal Intensive Care Nursery: Values, Ethics, and the Injury of Continued Existence

Introduction

The birth of a child should be a joyous event; sometimes, however, when the newborn suffers from serious birth defects, it may be tragic. Parents and professionals then face a difficult set of choices that range from using aggressive measures to keep the child alive, to providing only comfort measures and allowing the child to die as quickly and painlessly as possible. Decision-making is made immeasurably more difficult when hope becomes a confounding factor. The discussion that follows will focus on the ethics of hope in neonatal intensive care unit (NICU) decision-making, with particular emphasis on the role of the neonatologist.

Hope

Much of what happens in the NICU is driven by hope: hope on the part of the physicians, hope on the part of the nurses, and hope on the part of the parents. Consider the following case:

A female infant (1125 g), 20 days post-birth on assisted ventilation, was admitted from another center. The infant had a low 5-minute Apgar score (> 5); congenital malformation of the heart, mouth, and pharynx; and spina bifida. While in the NICU she had acquired a catheter-related nosocomial sepsis; she also had bronchopulmonary dysplasia (BPD) and suffered from severe retinopathy of prematurity (ROP). It is possible to treat BPD and ROP with steroids, but these have a toxic effect on the developing nervous system and pose a dramatically increased risk for neurodevelopmental impairment. Surgical intervention for the spina bifida was possible, but the child would always be incontinent and have no control over her lower extremities. The infant was not responding well to antibacterial treatment and the estimate for survival was low (less than 10%). The nurses were convinced that the best course of action would be to use only comfort measures, and they tried to persuade the attending neonatologist to get the parents to accept this. The neonatologist was of the opinion that even though the neonate's chance of survival beyond (at most) 6 months was slim, and even though the child would be severely disabled and in constant need of medical attention if she did survive, it was important to give the parents hope for a positive outcome. She therefore presented the relevant statistics in as positive a manner as possible and continuously reassured them that modern neonatology was making constant advances and that while there was life, there was hope. The parents, persuaded by what they took to be the positive outlook of the neonatologist, stated that all possible measures should be adopted to keep their daughter alive. The child died 2 months post-birth. The parents and staff were devastated.

When reviewing the case, the neonatologist put forth her dilemma as follows: “How do caregivers continue to offer hope, and what can the family hope for, as the problems faced by the neonate become more and more obvious and their implications begin to sink in? How does one's sense of hope change when all appears hopeless?”

This statement suggests that hope is often considered a positive thing in the NICU even when the prognosis is grim, and that it is important to encourage hope even under circumstances like that described above. This attitude also seems to underlie the very terminology that is sometimes used in extreme cases: for example, when the neonatologist says “the prognosis is very poor.” To the nonmedical mind this suggests that there is still some chance of a positive outcome when in fact that is not what is meant at all. It therefore encourages hope, despite medical expectations.

In a nutshell, fostering a hopeful attitude and using such terminology in these cases is ethically indefensible because it amounts to deception. There are situations in the NICU in which hope is appropriate, but there are also situations in which hope should play no role, and where the language of hope is not only misplaced but also morally reprehensible.

At first glance, this may seem bizarre. After all, hope as a positive force has a noble ancestry. The Old Testament told of the importance of hope in desperate situations (Zechariah 9:12), and the 2nd century BC Roman author Terence, in Heauton Timoroumenos, coined the immortal phrase “While there's life, there's hope.” Alexander Pope, in his “Essay on Man,” wrote, “Hope springs eternal in the human breast: Man never is, but always to be blest.” Matthew Arnold, in his poem “The Scholar Gypsy,” spoke of “Still nursing the unconquerable hope, still clutching the inviolable shade” and so on. In other words, religious and classic authors alike seem to have thought that hope always has a proper place in human affairs.

Not only classic sources hew to this tradition. It is well represented in the contemporary NICU, as evidenced by the statement of the neonatologist above and by publications such as Jerome Groopman's The Anatomy of Hope.[1] Drawing on his own experiences as a physician, Groopman suggests that adopting a hopeful attitude and fostering hope is an integral part of the physician's role, and that physicians should be trained in how to instill hope in their patients.

One should never ignore tradition and one is usually ill advised to ignore what is said by experienced professionals. One may disagree; one may approach what they say skeptically – but it is always worth looking at. This is especially true when the outcome is uncertain, the cost of failure is great, and all that is left is hope.

But is the matter really as simple as all that? It seems to me that the notion of hope in the NICU prompts several ethically relevant questions. First, whose hope are we talking about? The parents' or the healthcare professionals'? Each of these is differently placed, and the ethics – as well as the psychology of each – are different. Second, what exactly is being hoped for? Merely life? Or life with the possibility of developing as a person and the chance of meaningful interaction with other persons? Third, is it ethically appropriate for healthcare professionals to raise parental hopes when the professionals know that, barring a miracle, the outcome is tragic? Fourth, is it ethically appropriate for healthcare professionals to always operate on the basis of hope in their professional actions?

Whose Hope?

To begin with the most immediate question, Whose hope are we talking about? The parents' or the professionals'? The question may seem trite because we are tempted to say that of course it's the parents'. It is they, as duly empowered substitute decision-makers, who must ultimately decide; and it is their hopes that will determine how they understand and evaluate the options that the professionals present to them. The professionals' hopes figure only peripherally in this connection.

But the matter is not quite that simple. What the parents understand is not only filtered through the lenses of their own values and beliefs but is also importantly influenced by the information provided by the professionals, by how this information is presented,[2–5] and by the attitudes that the professionals project.[1] It may be very difficult for the neonatologist to effect value neutrality in order to avoid raising unreasonable hopes, because neonatologists are also people and have their own world views that influence how they act as professionals. In fact, they may not even be aware that they have a particular, deeply rooted valuational bias that determines when they think hope is warranted.[6] Therefore, unless neonatologists take special care to keep their own hopes and feelings out of the process, they may not only (and quite inadvertently) “launder” the information they provide but also project an attitude that is based on their own hopes and expectations.

Moreover, neonatologists are professionals and, like all other professionals, must find some meaning in what they do. If that meaning is lacking, burnout stands in the wings. In the high-pressure world of neonatology where every case is a crisis and failure to effect a cure is a constant reality, meaning can often be found only in advancing the boundaries of what is currently possible or in improving a modality beyond its present limits. For the sake of personal survival, therefore, the hopes of the neonatologist may become narrowly circumscribed within the realm of what is technically feasible, and s/he may adopt a can-do/must-do mentality. However, what is technically feasible is not necessarily what is pragmatically workable (or even reasonable) in ordinary life. Consequently there may be a disconnect between the hopes of the neonatologist who moves within the realm of technical possibilities, and the hopes of the parents who move within the realm of ordinary life. Both may talk of hope, but the very language of hope may obscure the fact that entirely different issues are at stake.

Finally, even though the primary patient is the infant, the parents are very much in the picture and their perceived needs can affect the neonatologist in a subtle but profound way. That is to say, neonatology is a medical specialty that involves years of scientific and technical training. On that basis, neonatologists will understand that while neonates (if they are conscious) may experience pain and agony, they do not suffer in a way that involves emotions and values. That kind of suffering is possible only for cognitively developed persons.[7] The parents, however, do suffer precisely in that sense even though they are not themselves in pain. They suffer, and their conscious plight resonates with the neonatologist's therapeutic orientation. The neonatologist therefore experiences an almost automatic impulse to assuage the parents' suffering because that is good therapy. Unfortunately, that may lead to projecting hope where hope is slim or nonexistent. The above case illustrates this only too well. As a result, decisions may be made that are directed at the wrong party (the neonate), for the wrong reason (to make the parents feel better), and using the wrong means (sophisticated medical intervention). Instead of projecting hope, it would be more appropriate for the neonatologist to explain the grim reality to the parents in unmistakable terms, and to suggest that it may be more appropriate to engage in terminal palliation. Not only would that be more appropriate for the infant as primary patient, but it would also be ethically more appropriate towards the parents because it would not prolong their grief and suffering.

What Is Hoped For: Futility, Hope, and Values

This, of course, raises the question of whether it is ever ethically appropriate to raise parental hopes – or even to leave parents with the belief that there is any reason to have any hope at all – when medical intervention is futile, and when the only thing that will happen is that for a short period of time the newborn will be tortured to life. In other words, it raises the issue of hope in the face of futility.

Much has been written about the notion of futility and its hidden value-assumptions,[8–15] and sometimes, in the give-and-take of medical decision-making, the issue is complicated still further by considerations that have nothing to do with medical possibilities but everything to do with economic factors, such as the parental ability to care for the child if it should live, or even their ability to pay for the medical procedures themselves. Consideration of these latter issues transcends the scope of the present discussion. One thing, however, is clear: Futility is a goal-relative notion. Nothing is inherently futile; something is futile only relative to the goal that one is trying to attain. That goal, in turn, is important only because of the values that are associated with it. Value assumptions are therefore integral to the notion of futility because they are integral to a goal-oriented point of view.

From the neonate's perspective here-and-now, nothing is futile because neonates have no values. However, that does not mean that one can abandon all neonate-centered value considerations. In a more-or-less obvious sense, it is still reasonable to say that all living beings have a fundamental value of freedom from pain and suffering, and that it would violate this fundamental value to save a neonate whose sole prognosis was for a life of irremediable pain and suffering. It may even be reasonable to say that it would be unethical to keep alive a severely compromised newborn whose prognosis is merely for life with no possibility of sentient cognitive awareness, because that would be to violate its value as a human person. The notion of hope has to be sensitive to such considerations.

Then there are the 3 other parties: the medical professionals, the parents, and society. Professional medical values, and in particular the values of the neonatologist, are inappropriate as the sole basis for healthcare decision-making. The reason is patent. Physicians in general and neonatologists in particular constitute a subculture whose conceptual framework and values are formulated in the context of sophisticated medical training and practice.[16] Moreover, the societal engagement of neonatologists is on a distinctive level and their understanding of lived experiences is different from that of the ordinary, nonmedical person. Therefore, it is not a foregone conclusion that the notion of futility as understood from a medical perspective is the same as the notion of futility as understood by the parents or by society. The situation is complicated still further by the fact that even within the medical setting, what percentage denotes futility is not at all clear.

At the same time, to assume that parental values should automatically define the notion of futility is also debatable. The parental value framework may be distinctive and at variance with the values of society at large. Therefore, to define futility – and hope – solely in terms of parental values may well punish the child for the fact of having been born to these particular parents because other parents, whose values are more in tune with societal values at large, would characterize hope and futility differently. This ethical consideration finds legal reflection in the famous statement that while the parents are at liberty to make martyrs of themselves, they are not at liberty to make martyrs of their children (Prince v. Massachusetts 321 US 158 [1944]).

Moreover, to treat a neonate aggressively solely to satisfy parental goals and values is to treat the child not as a person but as a tool: as means to an end. One may debate whether newborn children are persons in the full sense of that term;[17–24] and it may be the case that if a neonate is permanently unconscious and insensate, parental interests should ethically take priority. However, even here one should not lose sight of the fact that the neonate is a living being, and a living human being at that. This means that there are limits to what ethically one may do to a neonate in the name of parental interests and values. It means that, minimally, one should treat the neonate with the same respect as one accords all other living beings and that, minimally, one should limit the burden of treatment within the same range that society finds acceptable for other animals. It may sound outrageous, but sometimes the treatment of neonates in the NICU goes beyond what one would allow even for pets because parental interests and values are presumed to trump all other considerations.

As to society's values, here too one must be careful, as history shows only to well. It was society's values in Nazi Germany that characterized the condition of mentally and otherwise disabled newborns as hopeless because theirs was a life not worth living. Clearly such values – in fact, values in general that are centered on some discriminatory and abstract ideal that loses sight of what it is to be human – are ethically unacceptable. At the same time, the pendulum may also swing the other way. Social values may be completely unrealistic and may be based on a social process that trades political correctness for fundamental ethical principles. Social values should condition hope only if they are in keeping with fundamental ethical principles. On that basis, they can form the backdrop against which one can evaluate the legitimacy of professional and parental values, and evaluate the chances of a successful outcome using available medical interventions. Of course, social values should never be used in an absolute sense. Like all values, they should be applied relative to the specific conditions of the situation at hand. In the case above, this means that while a hopeful attitude was initially indicated, as time went on this became less and less reasonable and the neonatologist should not have continued to project a hopeful attitude towards the parents when the likelihood of survival fell to less than 10%.

Hope, Professional Ethics, and Trust

As Tauber has recently emphasized,[25] there is a de facto covenant between physician and patient. That covenant is based on trust. What is ethically important about trust, and what is central to hope in the neonatal setting, is not the psychological attitude of trusting itself but what grounds that trust – what justifies it. That is its real ethical core; it undergirds the covenantal physician/patient relationship. This element does not disappear when the patient is a neonate. If anything, the very incompetence of the neonate entails that the physician should take even greater pains to preserve the foundation that merits this trust. As Ramsey so aptly put it, “Utter helplessness demands utter protection.”[26]

This does not mean that the presumption should automatically be in favor of life. Instead, it means that the neonatologist should keep in mind that sometimes life itself can be a burden, and that to keep the infant alive is to perpetrate a deliberate injury. It means that the neonatologist owes it to the infant not to use standards that physicians would not normally use for other persons, and not to let parental decision-making be guided by a false hope that would require a miracle for its realization.

Finally, it means that the neonatologist should always keep in mind the ultimate purpose of the NICU. It is not to unremittingly push the limits of what can be done, nor is it to provide (expensive) therapy for the parents. It is to provide treatment for the infant in keeping with what it is to be a person. In this connection it may be useful to recall the words of Pope Pius XII:[27]

… man (and whoever is entrusted with the task of taking care of his fellow man) has the right and duty in the case of serious illness to take the necessary treatment for the preservation of life and health… But morally, one is held to use only ordinary means according to the circumstances of persons, places, times and cultures, that is to say, means that do not involve any grave burdens for oneself or another. A more strict obligation would be too burdensome for most men and would render the attainment of a higher, more important good too difficult.

One may reject the ordinary/extraordinary distinction as being too vague; one may object that, practically speaking, the position has dubious value because it does not identify who should make the decision; and one may even say that the notion of what is too burdensome is hopelessly ill-defined. Despite all that, the passage still contains a valid point that is relevant to the present context: The purpose of medical intervention is not simply to save life, because life is not the greatest good; it is life that has meaning in human terms. Therefore, offering medical intervention and maintaining hope is ethically appropriate when there is a reasonable chance that medical procedures will be effective and that their outcome will be meaningful in terms of what it is to be a person.

This means that to offer the parents hope so that they will opt in favor of treatment may often be appropriate – but sometimes it will not. If the value and the expectation that underlies this hope is merely for life, if it does not involve the infant as person with the capacity for sentient cognitive awareness and without suffering, then it is ethically misplaced. And if hope is based on expectations that no physician would find reasonable in any other setting, then to keep silent in the face of parental hope or to allow it to determine how the infant is treated is to facilitate the injury of continued existence. It is to abandon the covenant between neonatologist and child.

It is also to abandon the parents. What parents then require is not hope but appropriate counseling – and some way of finding meaning in the tragedy that has befallen them. The obvious, and probably least sensitive, way to provide this is to focus of the possibility of having another child. However, that may not be an option for some parents. More important, however, is that it does not aid in finding meaning in the tragedy; instead, it diverts attention away from it and downplays its emotional impact. It essentially says to the parents. “Get on with your life!” A more meaningful way to deal with the situation would be to suggest that the parents should consider their child becoming an organ donor. In that way, its life will have made a positive impact, the tragedy notwithstanding, and its legacy will live on by helping another person. Of course, that may be difficult if the neonate is anencephalic. Current transplant protocols virtually guarantee that organ donation will be impossible in such cases.[28] It may be appropriate for the relevant professional bodies to re-examine their stance in this regard.[29,30] When hope is no longer reasonable, the inability to find meaning in a tragedy may compound the tragedy itself.