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Introduction
The question of who should be the ultimate end-of-life decision-maker for a child with a life-limiting condition remains a contested issue in the ethics and clinical literature. 1-3 Although parents' right to be the decision-maker for their children in less serious clinical situations is well accepted, 3 4 this has seemed less clear when the decision to forego treatment, an end-of-life decision, is likely to result in the child's death. An end-of-life decision is understood as foregoing life-sustaining medical treatment (LMT) either by withdrawing or withholding. 5-7 Clinicians' concern about possible negative psychological consequences for parents who make decisions to allow their child to die has been discussed in the literature. 1 8
Available evidence is equivocal about parents' experience and opinion regarding who should be the ultimate decision-maker. 1 2 9-12 Different models have been identified for actual parental decision-making involvement. 1 2 Caeymaex and colleagues 1 found that four types of decision-making role were perceived by the parents of newborns in the Newborn Intensive Care Unit-shared, medical, informed parental, and no decision. Generally studies report that, when faced with an end-of-life decision for their child, parents want to be involved in the decision-making process, 1 2 but parents vary in the type of involvement they prefer and what involvement means in practice. 1 2 Some parents of preterm infants, for example, when asked about what role they would prefer in such situations, have indicated they want to be involved but not be the ultimate decision-maker. 12 Other parents, in different studies, want to be the ultimate decision-maker 10 11 while some parents have said they would prefer the doctor make the decision. 13 Findings also vary about the effects on parents of being the one to make end-of-life decisions for their child. 3 14-18
This study aimed to further elucidate these issues by providing a nuanced understanding of the nature and experience of parental involvement in decisions, and hence clarifying the ethical question of how decision-making should be approached with parents at end of life. Greater clarity on this matter will be supportive to parents and of assistance to doctors in their care of families.
This paper reports several findings from a qualitative study of 25 bereaved parents, which examined their...