What parents want from doctors in end-of-life decision-making for children.

Abstract

End-of-life decision-making is difficult for everyone involved, as many studies have shown. Within this complexity, there has been little information on how parents see the role of doctors in end-of-life decision-making for children. This study aimed to examine parents' views and experiences of end-of-life decision-making. A qualitative method with a semistructured interview design was used. Parent participants were living in the community. Twenty-five bereaved parents. Parents reported varying roles taken by doctors: being the provider of information without opinion; giving information and advice as to the decision that should be taken; and seemingly being the decision maker for the child. The majority of parents found their child's doctor enabled them to be the ultimate decision maker for their child, which was what they very clearly wanted to be, and consequently enabled them to exercise their parental autonomy. Parents found it problematic when doctors took over decision-making. A less frequently reported, yet significant role for doctors was to affirm decisions after they had been made by parents. Other important aspects of the doctor's role were to provide follow-up support and referral. Understanding the role that doctors take in end-of-life decisions, and the subsequent impact of that role from the perspective of parents can form the basis of better informed clinical practice.