When parents veto telling the truth to a seriously ill child

L. Gillam1, M.Spriggs, C.Delany, M.McCarthy.

1University of Melbourne, Parkville, Australia, 2Royal Children’s Hospital, Parkville, Australia

Clinical Ethics Services are sometimes involved in cases where parents do not want their child to be told the truth about their medical condition. Two examples from our experiences are:

Case 1 – Joe is a previously well 12 year old boy who developed acute myocarditis.  His parents don’t want him to know that he is too unwell to have a transplant.

Case 2 – Tina is a 10 year old girl with an untreatable spinal tumour. She is dying.  Tina’s parents have never allowed her to be told anything about her condition or prognosis.

“Truth telling” or disclosure of information to children and adolescents with serious childhood illnesses is an issue that has gained increasing momentum over recent decades. There is wide consensus amongst clinicians and ethicists that children should be presented with “honest” information delivered in a developmentally appropriate manner.  However, the conceptual basis for this is under-theorised, especially for younger children – pre-adolescents in the 5-12 years old bracket. These children are old enough to understand some information, but are not yet “mature minors” who are capable of sufficient understanding to make their own health care decisions.

We argue that in discussing these cases, the Clinical Ethics Service may not be able to rely on the ethical certainty that truth-telling is always the right thing to do.  It will need to consider what counts as the interests of a child with a short time to live, together with the effect on the child of not being told the truth and whether that would promote or undermine their interests. This requires a nuanced understanding of what constitutes a child’s broad interests and how knowing the truth relates to their interests.  We focus in particular on situations where the child is terminally ill.


Biography:

Lynn Gillam is Professor in Health Ethics in the Melbourne School of Population and Global Health at the University of Melbourne, and Academic Director of the Children’s Bioethics Centre at the Royal Children’s Hospital Melbourne.  Lynn is also Chair of the University of Melbourne Central Human Research Ethics Committee. Her research interests focus on human research ethics, and paediatric clinical ethics, and she has published widely in these fields. Lynn has been working in a clinical ethics role at RCH Melbourne for the past 10 years, and has participated in over 200 clinical ethics case consultations.