An uncertain future? Counselling and decision‐making around treatment withdrawal for newborn infants

In this issue, Pal and colleagues from Cambridge describe a small cohort of infants with severe hypoxic–ischaemic brain injury 1. These eight infants survived for a prolonged period (weeks to years) after withdrawal of mechanical ventilation in intensive care despite the apparent belief of the infants’ clinicians that death was inevitable. Survival was not expected for these infants. But should it have been? How common is it for infants to survive after limitation of treatment? There are no prospective studies in neonatal intensive care to answer that question. In studies in adult intensive care, 4–7% of patients who had palliative withdrawal of mechanical ventilation survived to discharge from hospital 2, 3. In contrast, in a prospective study in paediatric intensive care, there were no survivors 4. Our own recently published retrospective series identified survival to discharge in 28% of infants with severe brain injury in whom there had been discussions about potential limitation of treatment 5. The chance of survival following withdrawal or withholding of treatment is likely to be influenced by a number of factors. One factor is the reason for treatment limitation. Infants who are moribund despite maximal intensive care and having treatment withdrawn on the basis of imminent demise would be unlikely to survive. Infants who have treatment limited in the setting of poor neurological prognosis, in contrast, may not require high levels of intensive medical support and consequently may survive when this is withdrawn. In our own study, ¾ of infants were ‘physiologically stable’ at the time of discussions about treatment limitation 5. In the Cambridge study, five of the eight infants were minimally ventilated (in room air) or on noninvasive respiratory support 1. Another factor may be the timing of decisions: earlier treatment withdrawal may be associated with a higher chance of death in patients with brain injury 6. The median time for treatment withdrawal in the Cambridge study was day 7 after birth 1. In our cohort, treatment limitations occurred earlier in infants who died (median day 1) than in infants who survived (median day 6, p < 0.001, unpublished data). Finally, subsequent decisions, made after withdrawal of mechanical ventilation, may influence survival, for example, the intensity of sedation or analgesia, or decisions to limit other treatments such as artificial nutrition. One implication, highlighted by Pal et al., is the importance of careful counselling of parents (and staff) about possible survival at the time of limitation of treatment. Adult physician Alexander K Smith and colleagues 7, writing in the New England Journal of Medicine in 2013, described the importance of acknowledging uncertainty in prognosis. They aptly and memorably skewer attempts to eliminate uncertainty as ‘punctilious quantification of the amorphous’ 7. Instead of trying to find certainty, professionals need to improve how they communicate uncertainty, and how they provide support for families and patients to deal with the unknown 7. One helpful concept, familiar to palliative care professionals, is that of parallel planning 8. The idea is that in a child with a life-limiting illness, care planning should include provision for the child's needs if they deteriorate and die, but also provision for health care in the event of medium-term or long-term survival. That can include transition between different levels of types of care 9. The focus is on maximising the child's quality of life however long or short that may be. This is not to underestimate the challenge. Parallel planning may be relatively easy to communicate in the context of a long-standing chronic illness. Parents in intensive care who have concluded that their child's future looks so grim that it is best to allow them to die may experience considerable distress and anxiety at learning that there is a chance of survival even if treatment is withdrawn. There is a delicate balance to be found between causing distress (by communicating uncertainty) and avoiding distress (through unanticipated outcomes). But the solution to uncertainty is not to ignore it, rather to explicitly plan and provide support for it. It is not necessary to describe in detail every potential outcome, but rather to outline those that are possible and to emphasise the support that the medical and palliative care teams will provide if they arise. Pal et al.'s paper raises the question of whether withdrawal of artificial nutrition and hydration (ANH) is an ethical option for infants with severe hypoxic–ischaemic encephalopathy (HIE). In their series, the prognosis for all infants was sufficiently poor that there was a clear judgment that it was acceptable to withdraw mechanical ventilation and to withhold resuscitative efforts if the infant were to subsequently arrest 1. All of the infants who survived were described to have very significant neurodevelopmental abnormalities 1. Yet the option of withholding another form of life-prolonging treatment was not offered or discussed with parents. Seven of the eight infants were receiving enteral feeds by nasogastric tube at the time of discharge from the neonatal unit. Should it have been an option to not provide nasogastric feeds? One basic ethical argument potentially permitting its withdrawal is that ANH is a life-prolonging medical treatment. Like all other life-prolonging treatments ANH is often in the best interests of a patient. However, equally, like all other life-prolonging treatments, ANH is sometimes not in the best interests of the patient; it may be withheld or withdrawn on the same ethical basis as treatments like mechanical ventilation or cardiopulmonary resuscitation 10, 11. There are different reasons for reaching a decision 11. Life-prolonging treatment is sometimes withheld or withdrawn because of the unpleasantness and burden of that treatment for the child 11. In such situations, it may be in the child's best interests to provide some nonburdensome life-prolonging treatments (e.g. ANH), while at the same time withholding or withdrawing other more burdensome ones (e.g. mechanical ventilation). However, there are also situations where life-prolonging treatment is withheld because of the burden and unpleasantness of the child's illness, or where a child has such profound neurological impairment that they are unable or unlikely to benefit from continued life 11. In those situations, it may not be in the best interests of the child to provide any life-prolonging medical treatment. These latter justifications are (in most cases) the reasons why withdrawing treatment is felt to be ethical in infants with HIE. It appears therefore that withdrawal of ANH may be reasonable. Again, we should not underestimate the challenge that this may pose for parents and for staff. Our Australian study found that a number of parents did not wish to go down this path 5. Others initially decided to withhold ANH, but later changed their mind. In a Canadian case series of withdrawal of ANH in newborn intensive care, (almost all of whom had HIE), 10 sets of parents provided their perspectives on the decisions they had made 12. Although the parents felt well supported and found withdrawal of ANH acceptable, they also described their personal anguish at making the decision, and at the length of time between decisions and death 12. The other ethical implication of the study by Pal et al. is the importance of providing support for children who survive after withdrawal of life-sustaining treatment. The paper highlights the very substantial long-term health problems in these children. On the one hand, the severity of those problems is reassuring – it suggests that prognostication in the newborn period was robust and supports the appropriateness of decisions that were made. On the other hand, this same severity of illness and impairment means that these children, and their families, need a great deal of support. It is sometimes tempting, in neonatal intensive care, to focus on the success stories. Many neonatal units have poster boards full of cards, pictures and stories of miracle survivors – those who beat the odds and survived with no or minimal long-term problems. However, neonatologists also have a responsibility, and perhaps a special responsibility, to pay attention to the stories that are not so rosy. As a community of professionals, we have come to recognise the importance of end-of-life care, and supporting families whose children do not go home from the neonatal unit. We also need to remember those children who go home, but with very substantial long-term challenges. DW was supported for this work by a grant from the Wellcome trust WT106587/Z/14/Z.

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