End-of-life decision-making in paediatric oncology

Until today, there has been a lack of studies on minors' rights to be heard and to have their wishes respected in healthcare. This study looks at children who were recently diagnosed with cancer or who are receiving cancer treatment. The opinions of these children, their parents and oncologists will be explored. The study participants are recruited at member clinics of the Swiss Paediatric Oncology Group (SPOG). A survey will be used to obtain a detailed picture of how end-of-life decisions for minors are currently made. Furthermore, interviews with oncologists, parents and the minors themselves will provide insights into the attitudes and reasons connected with these difficult decisions.

The goal of this study is to examine the extent to which minors with cancer can be included in decision-making concerning treatments at the end-of-life. The information gained should depict the circumstances and conditions of these decision-making processes.

The study aims at contributing to a better understanding of this complex issue and thus to a more informed decision-making concerning minors' autonomy. The findings will provide a basis for evaluating how and to what extent minors should be included in their treatment decisions. Study results could be used as guidelines by practicing physicians, researchers, bio-ethicists and policy makers. In addition, the study should contribute at both national and international levels to debates concerning autonomy of minors when it comes to health care decisions in general and difficult end-of-life decisions in particular.

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