Sorry to Wake You…But I Have to Inform You of Your Imminent Death

Abstract

Source: Vince T, Petros A. Should children’s autonomy be respected by telling them of their imminent death? J Med Ethics. 2006;32:21–23.The authors of this discussion, from Great Ormond Street Hospital in London, report the case of a 14-year-old developmentally normal boy with phenylketonuria, IgG2 subclass deficiency, obliterative bronchiolitis, and chronic respiratory failure requiring home oxygen therapy, who was being considered for lung transplant. The adolescent was admitted for acute respiratory failure requiring ventilation for 5 days before he was extubated. He rapidly deteriorated, and following reintubation and heavy sedation, it became apparent that further aggressive care was futile and withdrawal of therapy was the only remaining option for this terminally ill child. Intense discussion arose concerning the question of informing him of his imminent death, a topic that had not been broached previously despite his having a medical condition that made this a likely possibility. One view held that the boy should be awakened because not doing so deprived him of both autonomy and the opportunities to express last wishes and say goodbyes. Others argued that even if awakened, he would have no real opportunity to exercise autonomy because no treatment options existed, and that to wake a child simply to inform him of his impending death would be cruel and unnecessary. His parents favored allowing him to die without waking him. After a multidisciplinary meeting, it was decided to respect the parents’ wishes.According to the authors, the caregivers prioritized paternalistic considerations based on the principle of non-maleficence over the principle of respect for autonomy, and acted in what they believed was the best interest of the child. Godkin offers a commentary in the same issue1 stating that this case highlights the value of introducing end-of-life discussions early in the treatment of anyone who is chronically ill. He believes deciding not to inform a child of impending death is not necessarily paternalistic; however, failing to consider previously expressed wishes and values would be.Dr. Ross has disclosed no financial relationship relevant to this commentary. This commentary does not contain a discussion of a commercial product/device. This commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device.This case involves an adolescent who is aware of the chronic nature of his disease and his probable need for a transplant, but has not been told of the potential life-threatening nature of both his illness and potential treatment. He is now intubated and unaware that he is dying. This poses 2 questions: 1) whether to lighten his sedation to inform him of his impending death; and 2) whether failure to inform him violates his autonomy. These are the wrong questions being asked at the wrong time. To suggest that awakening him now to inform him of his imminent death would show respect for autonomy fails to understand what the principle of autonomy requires. It is not just about giving information, but allowing the patient to process the information (understand), deliberate about a decision, and act upon it. There is no time to adequately process this information, and no decision for him to make as the parents and team have decided that withdrawal of life-sustaining treatment is the only appropriate medical option. One could argue that the adolescent still might want to know he is going to die, so that he can settle his affairs, and that he might want closure with his family. When an individual cannot speak for himself, autonomy is expressed through a surrogate who either acts according to the patient’s previously expressed wishes (none in this case) or acts in the patient’s best interest.2 In this case, the boy’s parents agree that it is best not to wake him. Although the decision conforms to the principle of respect for autonomy, we remain unsatisfied because of the true ethical lapses that this case entails: the failure of the health care providers to previously communicate with this adolescent about his life-threatening illness and the resulting de facto exclusion of the adolescent from the decision-making process.