Should children’s autonomy be respected by telling them of their imminent death?

Vince and Petros describe the heartrending situation of an adolescent boy who has been diagnosed with terminal respiratory failure and for whom no further beneficial medical treatments are available. All of the members of the healthcare team and the boy’s parents are in agreement that mechanical ventilation should be withdrawn with the expectation that the child will die shortly thereafter. Conflicting views arose, however, as to whether the boy’s sedation should be lifted so that he could be informed of his impending death. The authors lay out the opposing arguments, for and against informing the child of his impending death, in some detail. Rather than specifically critiquing those arguments, I would like to comment on several ancillary issues that were not explored in the paper and, in doing so, point to some ways in which end of life decision making processes could perhaps be improved in the future.

ADVANCE CARE PLANNING

The analysis of this case highlights the potential value of ongoing and early introduction of discussions around death and dying with chronically and terminally ill persons, even when the person is a child (using age appropriate language and descriptions). In the paper, we are given relatively few hints about the boy’s understanding of the nature of his disease (although the authors do indicate that there had been no previous discussions with him about the gravity of his condition). It is unclear what conversations took place with him during the …