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Published online November 30, 2009
PEDIATRICS Vol. 124 No. 6 December 2009, pp. e1142-e1148 (doi:10.1542/peds.2009-0621)
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ARTICLE

Attitudes of Adolescent Cancer Survivors Toward End-of-Life Decisions for Minors

Geert Pousset, MAa,b, Johan Bilsen, PhDb, Joke De Wilde, PhDc, Yves Benoit, MD, PhDd, Joris Verlooy, MDd, An Bomans, PhDd, Luc Deliens, PhDb,e, Freddy Mortier, PhDa

a Bioethics Institute Ghent
d Department of Paediatric Hemato-Oncology, Ghent University Hospital, Ghent University, Ghent, Belgium
b End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium
c Research Department, University College Ghent, Ghent, Belgium
e Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU Medical Centre, Amsterdam, Netherlands

OBJECTIVES: The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS), and euthanasia, and the influence of illness experience on these attitudes.

METHODS: Adolescent cancer survivors were interviewed with a structured questionnaire using hypothetical case descriptions. The results were compared with a study of 1769 adolescents without experience of chronic illness.

RESULTS: Eighty-three adolescents, 11 to 18 years of age, were interviewed. In terminal situations, 70% to 90% found requests for NTDs acceptable, 84% requests for APS, and 57% to 64% requests for euthanasia. Requests for end-of-life decisions were less acceptable in nonterminal situations, where 28% found requests for NTDs acceptable, 39% to 47% requests for APS, and 11% to 21% requests for euthanasia. Frequently cited reasons for holding back physicians from administering a lethal drug to a child were the child not being well informed about his or her condition (92%) and the parents' opinion not being asked (92%). Compared with adolescents without experience with chronic illness, cancer survivors were more accepting toward requests for NTDs and APS in terminal situations.

CONCLUSIONS: Adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. They value autonomous decision-making, without excluding parents from the process. The experience of living through a life-threatening illness can alter adolescents' attitudes toward requests for NTDs and APS.

Key Words: attitude • adolescents • euthanasia • withholding treatment • decision-making • patient participation • mental competency • chronic illness

Abbreviations: ELD—end-of-life decision • NTD—nontreatment decision • APS—alleviation of pain and symptoms

Accepted Jun 29, 2009.


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