This study, with 25 bereaved parents used semi-structured interviews to examine parent's views and experiences of end-of-life decision making. Parents reported varying roles taken by doctors: the provider of information without opinion, giving information and advise 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.
Sullivan, J., Mongale, P. & Gillam, L. 2014. What parents want from doctors in end-of-life decision making for children. Archives of Disease in Childhood 99 (3) pp 216 - 220.
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