Case narrative

A 7-year-old boy with recurrent medulloblastoma presents to the emergency department with seizures. He receives multiple antiepileptics and subsequently loses the ability to protect his airway. As a result, he is intubated and supported with mechanical ventilation. Over the next several days he requires high doses of benzodiazepines and barbiturates to control his seizures. Eventually, his seizures stop and physicians modify the antiepileptic agents to a maintenance regimen. He is evaluated for extubation. Because of his waxing and waning mental status and frequent apneic episodes (not related to medications) he does not meet extubation criteria. Imaging of his brain demonstrates spread of his brain tumor despite previous aggressive chemotherapy. The neuro-oncologist acknowledges that no therapeutic alternatives remain to lessen tumor burden or halt progression of the disease. The clinicians hold a meeting with the family to discuss care options and goals and create a clinical plan.

Ethical principles and discussion

Medical technologies provide the opportunity to maintain life artificially and, at times, nearly indefinitely. Most of the time life support appropriately allows time for patients to recover from complex surgery or devastating illness. However, at other times technology sustains bodily functions with no realistic possibility of cure or return to what involved parties consider a reasonable quality of life. In these situations determining when to forgo life-sustaining therapies provides clinical and emotional challenges for families and the clinicians caring for the critically ill children. While some argue that the “sanctity of life” is absolute and the full complement of available technologies should always be used to maintain life, others believe in the moral permissibility of forgoing life-sustaining therapies (FLT) in certain situations. In this chapter, we address the ethical issues posed by FLT through a discussion of the steps involved in reasoned decision making: first, recognizing criteria for considering FLT; second, deliberating about the FLT decision; and third, determining whether or not to go ahead with FLT. We also discuss the specific issues pertinent to decisions about discontinuing medically provided fluids and nutrition (MPFN). Finally, we briefly consider issues related to care of patients for whom a decision to forgo life-sustaining therapies has been made.