Children and adolescents with cancer

Attitudes and motives concerning end-of-life decisions: Competency and autonomy of children and adolescents in paediatric oncology

Despite recommendations that children be involved in their end-of-life decision making, ethicists, paediatricians, scholars and parents disagree as to what extent competent children and adolescents should be involved in decisions when the illness is life threatening. Although it is an established practice to take into account the view of competent children and adolescents in ordinary paediatric care, when it comes to decisions that involve life and death, many think that minors should not be given full decision making powers and that parents’ decisions in the best interest of the child must be respected. Furthermore, parents and physicians may adopt the view that they have the right or even the duty to protect minors in life threatening situations from the difficult and often traumatizing effects of fully comprehending all the risks.
The latter position is clearly paternalistic if adopted towards competent adults. However, where competent minors are concerned, there is a tradition to justify paternalism in some situations. Decisions at the end-of-life for minors are made after difficult consideration of various choices. This requires a complex medical, social, ethical, and legal approach to include different points of view. So far, there are not many studies examining minors’ right to have their wishes heard and respected. 
The aim of the study is to investigate the possiblity of including a child or adolecent living with cancer in his or her end-of-life decision making processes and to examine associated motives and attitudes behind such decisions. In the study, quantitative data obtained will paint a reliable picture of general aspects associated with decision making in paediatric oncology and qualitative one-on-one interviews will help evaluate motives and attitudes of parents, oncologists, and minors themselves when making this very difficult choice.
Study findings will hopefully improve the understanding and assessment of minors’ autonomy. It will set the grounds for how deep and in which manner could minors be involved in decision making. Study results will represent a much needed guide for practitioners, researchers, bioethicists, and policy makers dealing with these issues. Hopefully, this study will open way for further research and contribute to the social and policy debates concerning minors’ autonomy in health care decision making, both nationally and internationally.

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Project start:

01.04.2012-

PhD-Committee of Domniţa Oana Bădărău

Prof. Dr med. dipl. theol.Elger, Bernice (faculty representative) Head of the Institute for Bio- and Medical Ethics, University of Basel

Dr Tenzin Wangmo (thesis supervisor)(additionally projects) Institute for Bio- and Medical Ethics, University of Basel

Prof. Dr Thomas Kühne (Co-referee) University Children’s Hospital Basel (UKBB)

PhD-Committee of Katharina Ruhe

Dr Tenzin Wangmo (first supervisor)(additionally projects) Institute for Bio- and Medical Ethics, University of Basel

Prof. Dr med. dipl. theol.Elger, Bernice (faculty representative) Head of the Institute for Bio- and Medical Ethics, University of Basel


Prof. Dr med. Felix Niggli (second supervisor) Onkologie Universitäts-Kinderspital, Zurich

Prof. Dr Lainie Ross
(external supervisor) Departments of Pediatrics, Medicine, and Surgery, University of Chicago, Chicago, US

PhD-Committee of Michael Rost

Prof. Dr med. dipl. theol.Elger, Bernice (first supervisor) Head of the Institute for Bio- and Medical Ethics, University of Basel

Dr Eva De Clercq (second supervisor), IBMB, University of Basel

Prof. Dr phil.  Dr rer.publ.  Dr theol.  Dr phil.habil. Nikolaus Knoepffler (external expert), Ethics Centre, University of Jena

Prof. Dr med. Thomas Kühne (further expert), UKBB, University of Basel