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Saving vs creating: perceptions of intensive care at different ages and the potential for injustice

Introduction

The American Academy of Pediatrics and others have stated that critical care decisions for neonates, older children and adults should be made similarly.1, 2, 3 Nevertheless, when a newborn is at risk for a certain level of disability, some will deem it acceptable to withhold or withdraw life-sustaining therapy (LST) and allow him to die, whereas an older child with that level of disability may not be considered a candidate for comfort care. If so, there are at least two questions worthy of consideration. First, why might this be so? Second, is it morally justified? This essay provides an analysis of these questions in the setting of the following two cases.

Case presentations

Case no. 1: Catherine

A woman presents to the delivery room in preterm labor at 24 weeks post-menstrual age. The neonatologist meets the parents, and, consistent with policy statements, informs them of the child’s prognosis and their options using all the clinical data that is pertinent to this case.1, 2, 3 They are told that if LST is used, the likelihood of survival is about 50 to 70%. If the baby survives, she will have roughly a 50% chance of not being disabled, a 15 to 25% risk of major disability such as cerebral palsy, blindness, deafness, cognitive impairment and/or developmental delay, and also a significant risk (30 to 40%) of minor disability such as hyperactivity, behavioral problems and learning difficulties. Some babies have more than one of these problems: 5% of babies will have multiple major impairments. The neonatologist also offers the option of providing comfort care only, and states that in that case she would surely die. It is also made clear that if resuscitation is attempted and successful, situations may occur later in which it will be reasonable to consider withdrawing LST.2 After careful explanation of the situation, the risks and the options, the physician makes sure the parents understand and that they have no questions. Catherine’s parents need to decide between LST and comfort care.

Case no. 2: Sam

A previously healthy 2-month-old baby boy presents to the Emergency Department with fever, irritability, listlessness and respiratory pauses. He was sick with neurological signs and a rapidly spreading rash typical of meningococcemia. The cerebrospinal fluid was purulent and confirms the diagnosis of bacterial meningitis. The baby was in fulminant septic shock with disseminated intravascular coagulation. He had continued respiratory pauses, and experienced a seizure. The predicted survival was worse for Sam4 and the long-term prognosis for disability was similar.5, 6 The clinical team initiates LST, including intubation, mechanical ventilation and inotropic support. They inform the parents that their child has meningitis, will need to be transferred to the pediatric intensive care, is critically ill and might not survive.

Different approaches to decision-making and consent

In many hospitals in the United States, Canada and elsewhere, intensive care treatment would be initiated routinely for Sam, but considered optional for Catherine.2, 3, 7, 8, 9, 10, 11, 12, 13 Variations of treatment for meningococcemia may exist around the industrialized world because of a variety of possible factors, such as economic incentives, different combinations of therapies or random variation. On the other hand, variations of practice for neonates may be largely due to differences in opinions and values.14 Survival at 24 weeks may range from 0 to 84%, largely depending on the values of the physicians, which may directly influence how aggressive they choose to be in providing LST.

For the preterm newborn, there is no presumption that intensive care will be initiated, as there would be for the older child. This is in spite of the fact that the chance of survival is worse for Sam4 and the long-term prognosis for disability is similar. Sam is at significant risk of many possible morbidities, including amputation, deafness, seizure disorder, cognitive impairment and learning disability.4, 5, 6 It is noteworthy that physicians, trainees, ethicists and the medical literature do not seem to raise the same questions, or at least to the same extent, related to how aggressive to be in the second case as in the first. Long-term prognosis aside, one relevant observation might be that the child born at 24 weeks may have a longer and more difficult hospital course. This is not always the case as some children with fulminant meningococcemia experience acute respiratory distress syndrome, complicated seizures and/or undergo amputations. Still, overall, it is not at all apparent that the benefit/burden equation for aggressive intervention is substantially different in the two cases.

At the outset of care, the informed consent process may look very different for these two patients. Policy statements all recommend very thorough informed permission for Catherine because (1) survival and long-term outcomes are uncertain, and (2) the hospitalization is burdensome and inflicts pain and suffering on the patient.1, 2, 3, 7, 8, 9, 10, 11, 12, 13 Thus, parents should be accorded considerable latitude with regard to resuscitation and ongoing LST. These concerns appear to apply equally to both patients under consideration. Still, for patients beyond the newborn period, there may be a greater presumption of aggressive care, and thus a less extensive informed consent process, even if the time pressure in the Emergency Department and for an impending delivery may be similar.

There are substantial survey data of physicians and others who support this observation of differential treatment.15, 16, 17, 18 In recent studies, a majority of health-care providers thought resuscitation was in the best interests of a 24-week preterm, but a significantly larger majority thought resuscitation was in the best interests of a 2-month-old infant with meningitis and a 7-year old with multiple severe disabilities, despite similar or worse predicted outcomes.15, 16, 17, 18 Moreover, among respondents who believed it was in the patient’s best interest to resuscitate the 2-month old with meningitis, only a small minority would accept the family’s refusal of resuscitation. For the preterm infant, on the other hand, more than half would accept such a refusal even when they thought intervention was in the best interest of the preterm infant.15, 16, 17, 18 These findings are found in a non-medical educated population, such as students in anthropology, philosophy and law.15 These findings are similar in culturally different groups.15, 16, 17, 18 Best interest of considerations are essentially subjective. Health-care providers and parents frequently have different views on ‘a good quality of life’. The parents of ex-preterm infants uniformly judge the quality of life of their children better than health-care providers and are more in favor of resuscitation of neonates with uncertain outcomes.19, 20 Some parents would rather have a child with extremely severe disabilities than a dead child, more than many physicians.21

It is well worth considering why these differences in the approach to newborns compared with older children might exist, and how they might be justified. If a defensible moral justification for a differential approach can be identified, then such an approach should not only be permitted but also perhaps in many settings be encouraged. However, if no clear justification can be identified, then the practice should be discouraged.22

Differential approach to neonates compared with older infants and children

Despite the fact that guidelines state that ‘the ethical principles of neonatal resuscitation are no different from those followed in resuscitating an older child or adult,’1, 2, 3 Catherine and Sam will very often be treated differently. Indeed, LSI for children with meningococcemia are routinely used and wide variations of practice do not seem to exist. On the other hand, survival for babies born at 24 weeks is 81% in Japan, 60% in Canada, 33% in the United Kingdom and is as low as zero in some centers in the Netherlands.14 Both invoke local or national policies, based on local or national outcome data, to justify their approach. Policy statements for preterm infants often state survival and handicap as justification for optional intervention. The fact that such outcome statistics would not be used to justify non-intervention approaches at later ages suggests that some other powerful factors are at work.23

It is not at all clear that resuscitation is more in Sam’s best interest than Catherine’s. Why, then, might resuscitation be considered more optional for Catherine? It might be because preterm babies lack the interpersonal attachments that older babies and children have, which may be correlated to age, or personhood. Sam is still very young and did not develop much interaction with his surroundings, but he has been home with his family, and his family has had much more time and opportunity to develop and to deepen the interpersonal attachments than has Catherine’s family.23 This difference would of course be even more pronounced with older children. It is possible that for health-care providers, sick neonates who depend on intensive care to survive do not have the same personhood as older infants who went home. Although all incompetent persons deserve equal consideration, it is possible that neonates, and possibly the very premature infant, are not considered to be the same kind of persons as older children. When we treat children who suffer life-threatening traumas, infections or cancer, we have ‘reversible’ conditions; we want Sam the way he was before his meningitis, at home in his family unit. Prematurity is not the same kind of disease. We do not want Catherine to become the way she was before life sustaining interventions. We want her to grow and not need life sustaining interventions. While acknowledging the potential role of this psychological factor, it must also be understood that a psychological factor does not in itself stand as an ethical justification for treating two individuals differently with regard to resuscitation or ongoing intensive care. In addition, there is, we believe, a second potential reason for a different approach to the preterm newborn that has received little attention: a perception of saving vs creating.

Saving vs creating

Sam was normal at birth, went home and was seen by and interacted with many individuals before he became sick. He was, in a tangible sense, ‘already here’ before he became infected and presented to the Emergency Department. His physicians’ goal was, rightfully, his survival with as little morbidity as possible. If they are successful, they may rightly perceive that they have ‘saved’ Sam, even if he is left with residual disabilities: But for our actions, the child would have died. Due to his disease, he has been left with disability. Unless a disability was the direct result of a clear medical mistake, it will be perceived as having been caused by the disease or original insult, not by the clinicians who treated the disease. The same would presumably also be the case for an older child who presented after a near drowning, with a malignancy or another life-threatening problem.

The perception of the physicians treating Catherine, however, might be very different. In particular, there may be a greater sense of responsibility if she is left with disability. In the case of a critically ill newborn (full-term or preterm), before she presented to the neonatologist immediately upon birth she had no direct human interactions with physicians, nor anyone else aside from her mother, and no direct visibility to anyone. She was, perhaps, in the minds of the physicians not yet ‘here.’ For the case of the preterm newborn, in particular, there may also be a sense that she is still ‘not meant to be here.’ If she survives with significant disability, the physicians might perceive that: But for our actions, there would be no disabled child.

Thus, we may perceive that we have rescued or saved patients who present to the hospital beyond the immediate newborn period, with or without residual disability, but that we have ‘created’ the child who presented as a newborn and survived with significant disability. Some physicians even refer to a preterm who survives with disabilities as a ‘product of the NICU.’ It is interesting to note that one less often hears a disabled child referred to as a ‘product of the Emergency Department,’ a ‘product of the OR,’ a ‘product of oncology’ or ‘product of the pediatric intensive care.’

There may for health-care providers be, justifiably or not, a greater sense of responsibility, guilt or what some have referred to as moral culpability, in the case of the disabled newborn patient. It would be understandable if physicians sought to avoid that sense of guilt by being less aggressive with intensive care measures for newborns (for example, making resuscitation more optional for parents) even in the face of similar prognoses. The possibility that physicians may feel more responsible for the residual disability of sick newborns may also explain why the informed consent process, particularly early in the hospital course or before intubation, may be more extensive for Catherine than for Sam. Once again, however, a desire to avoid the sense of moral culpability may be understandable from a psychological perspective, but this does not serve as an ethical justification for differential treatment.

Consider that overall survival at 22 weeks among those provided mechanical ventilation at major academic centers in the United States has been reported to be as high as 20%.24 If there were no significant disabilities among survivors, it seems likely that most pediatricians would be willing to try to save a child with a one in five chance of survival. Our reluctance to try, then, is most likely not due to high mortality rates but also rather to the high likelihood of disability among survivors. It is not here argued that this reluctance is misplaced or inappropriate. The point, rather, is that this observation is consistent with the interpretation that the fear of ‘creating’ a disabled child may be influencing medical management in the newborn period.

A survey study of medical students (we are unaware of any such studies in physicians) has shown them to be more likely to resuscitate a previously disabled child than a previously healthy child, if survival and disability outcomes were equal in the two groups.25 That is, future physicians seem more predisposed to saving a child with pre-existing severe disability than rescuing a child without disability, but who will be left with that same level of disability if he survives. This may seem counterintuitive, yet it is consistent with an aversion to perceiving oneself as having caused or created a disability.

Although we believe there is a perception that the medical system is creating a disabled child by resuscitating neonates with a possibility of permanent disability, and can understand its possible origins, we do not accept that it is valid or rational. The physician who thinks he has created anyone, disabled or otherwise, is mistaken. The critically ill newborn, preterm or term, is no more or less ‘meant to survive’ than any other child who has a life-threatening condition. We should attempt to save the patient or not, depending on some combination of prognosis, parental preference and our capabilities. If there is not a presumption of equality for newborns—that is, if it is accepted by the pediatric profession that newborns should not be treated the same as older children with regard to resuscitation—then this should be openly stated and ethically justified. If, however, a morally relevant difference cannot be identified and defended, then resuscitation decisions for newborns should be made similarly to older children and adults, as has been suggested by policy statements.

Conclusion

The perception that one has ‘created’ a disabled child by saving a newborn may lead to an increased sense of moral culpability, to a level not felt when one rescues or ‘saves’ an older infant or child. Although this perception might provide a psychological explanation for differential treatment of newborns, it is neither rational nor justified. Further, it could lead to a greater willingness to withdraw or withhold LST for the newborn in comparison to an older infant or child with a similar level of anticipated disability. Whenever we see patients with similar prognoses being treated differently, it should warrant, at the very least, a discussion as to why this might be so, and whether that difference in approach is justified.22 To our knowledge, no clear ethical justification for differential treatment of newborns in this regard has been openly accepted within the pediatric community.

Often, practitioners are unaware of their own implicit motivations and valuations. It is important that we explore these and acknowledge them, as they will likely influence our decisions. Careful analysis of our motivations may in many cases lead us away from treating newborns differently, particularly if we are unable to identify an ethical justification for doing so.

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Acknowledgements

We thank Professor Rosalind Ladd for early helpful discussions on the concept of saving vs creating.

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Correspondence to A Janvier.

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Both authors listed on the manuscript have seen and approved the submission of this version of the manuscript and take full responsibility for the manuscript. We do not have any prior publications or submissions with overlapping information (this is an opinion article). Both authors wrote a part of the first draft of the article and are the only ones who contributed to this article. We did not accept an honorarium, grant or other form of payment to produce the manuscript. The authors declare no conflict of interest.

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Janvier, A., Mercurio, M. Saving vs creating: perceptions of intensive care at different ages and the potential for injustice. J Perinatol 33, 333–335 (2013). https://doi.org/10.1038/jp.2012.134

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