An infant has a massive intracranial hemorrhage. She is neurologically devastated and ventilator-dependent. The prognosis for pulmonary or neurologic recovery is bleak. The physicians and parents face a choice: withdraw the ventilator and allow her to die or perform a tracheotomy? The parents cling to hope for recovery. The physician must decide how blunt to be in communicating his own opinions and recommendations. Should the physician try to give just the facts? Or should he also make a recommendation based on his own values? In this article, experts in neonatology, decision-making, and bioethics discuss this situation and the choice that the physician faces.
Copyright © 2016 by the American Academy of Pediatrics
RE: Blumenthal-Barby J, Loftis L, Cummings CL, et al. Should Neonatologists Give Opinions Withdrawing Life-sustaining Treatment?
Several things caught my attention in the December 2016 "Ethics Rounds." First, the physician believes that the prognosis for this 23-week gestation infant with a massive intracranial hemorrhage, seizures, and severe lung disease is “bleak” based on limited research data, as Dr. Meadow notes. He states that the infant will “never walk, talk, go to school, or interact with friends.” The first two may be very likely, though development of some form of communication is also likely, and the child should certainly attend school no matter how impaired. Moreover, human interaction with others cannot be so blithely dismissed as an impossibility. So, I am disturbed by the prognostication, based, it would seem, on the physician’s attitude about and experience with severely neurologically impaired children. Second, Drs. Loftis and McCullough base their comments on the assumption that there is “no reasonable possibility of neurologic development.” When I was in practice as a developmental-behavioral pediatrician, I don’t recall any infants or children, no matter how severely impaired, who did not show any neurologic development. The development might be very slow, and the child might require the support of technology to survive and thrive, but the parents could see some progress and interaction even when I had difficulty doing so. Third, I find myself reacting to the term: “neurologically devastated.” I remember reviewing an infant's CT brain scan with a pediatric neurologist many years ago. When she looked at it, she told me the child, whom I was soon to see for neurodevelopment evaluation, was “neurologically devastated.” A few weeks later the 2 year old walked into the office with his father and, with prompting from his father, held out his hand for me to grasp it. This is an uncommon event, but it gave me pause. The physician is certainly correct that there are parents who will find themselves unable to care for the child described in the scenario without significant disruption in their family life and overwhelming stress. But some families would suffer far more from not attempting to do whatever can be down to enable them to bring their infant home. As they note, shared decision making is very difficult, and the authors of the article describe the many pitfalls. We do owe it to parents, however, to understand their values and spiritual commitments, if those are important for them, and help them make decisions they can live with when they leave the hospital, with or without the infant they love.
So, what might I say to these parents? First, I would take time to understand the values and spiritual or religious commitments important to them, as stated well by Dr. Cummings. I would also suggest that they consult with persons whose opinions they value for help in their decision making. Second, I would present the medical facts as they evolve and encourage the parents to ask me any questions they have about prognosis. I would be clear about what the research shows and what its limitations are. I would then support whatever decision they make provided it is not outside the standard of care for seriously ill premature infants. I would be careful not to impose my own bias about caring for a severely impaired infant. How directive I am should be governed by the needs and demands of the parents, not by my personal biases.