patient autonomy; end-of-life decision making; attitudes and motives; paediatric end-of-life care; children and adolescents
Rost Michael, Acheson Elaine, Kühne Thomas, Ansari Marc, Pacurari Nadia, Brazzola Pierluigi, Niggli Felix, Elger Bernice S., Wangmo Tenzin (2018), Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records, in Supportive Care in Cancer
De Clercq E., Rost M., Pacurari N., Elger B., Wangmo T. (2017), Aligning Guidelines and Medical Practice: Literature Review on Pediatric Palliative Care Guidelines, in Palliative and Supportive Care
Wangmo Tenzin, de Clercq Eva, Ruhe Katharina, Beck-Popovic Maja, Rischewski Johannes, Angst Regula, Ansari Marc, Elger Bernice S. (2017), Better to know than to imagine: Including children in their health care, in AJOB Empirical Bioethics
, 8(1), 11-20.
Badarau Domnita O., Ruhe Katharina, Kühne Thomas, De Clercq Eva, Colita Anca, Elger Bernice S., Wangmo Tenzin (2017), From choiceless to hard choices: views of parents and oncologists on decision-making in pediatric oncology in two European countries, in AJOB Empirical Bioethics
, 8(1), 21-31.
De Clercq E., Elger B. S., Wangmo T. (2017), Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology., in Eur J Cancer Care
Badarau Domnita O., De Clercq Eva, Wangmo Tenzin, Dragomir Monica, Miron Ingrid, Kuhne Thomas, Elger Bernice S. (2016), Cancer care in Romania: challenges and pitfalls of children's and adolescents' multifaceted involvement, in JOURNAL OF MEDICAL ETHICS
, 42(12), 757-761.
Wangmo T, Ruhe KM, Badarau DO, Kühne T, Niggli F, Elger BS, Swiss Paediatric (2016), Parents’ and patients’ experiences with paediatric oncology care in Switzerland – satisfaction and some hurdles, in Swiss Medical Weekly
Ruhe Katharina, Badarau Domnita O, Brazzola Pierluigi, Hengartner Heinz, Elger Bernice, Wangmo Tenzin, SPOG group (2016), Participation in pediatric oncology: Views of children and adolescent patients., in Psychooncology
, 25(9), 1036-1042.
Ruhe Katharina Maria, Wangmo Tenzin, De Clercq Eva, Badarau Domnita Oana, Ansari Marc, Kühne Thomas, Niggli Felix, Elger Bernice Simone (2016), Putting patient participation into practice in pediatrics—results from a qualitative study in pediatric oncology, in European Journal of Pediatrics
, 175(9), 1147-1155.
Ruhe Katharina M., De Clercq Eva, Wangmo Tenzin, Elger Bernice S. (2016), Relational Capacity: Broadening the Notion of Decision-Making Capacity in Paediatric Healthcare, in JOURNAL OF BIOETHICAL INQUIRY
, 13(4), 515-524.
Ruhe Katharina, Elger Bernice S, Wangmo Tenzin (2015), “Chemo-Knights” and “Radio-Robby”: Provision of information in pediatric oncology., in Cancer Nursing
, 39(2), 2.
Badarau Domnita O., Wangmo Tenzin, Ruhe Katharina M., Miron Ingrid, Colita Anca, Dragomir Monica, Schildmann Jan, Schildmann Jan, Elger Bernice S. (2015), Parents' challenges and physicians' tasks in disclosing cancer to children. A qualitative interview study and reflections on professional duties in pediatric oncology, in Pediatric Blood and Cancer
, 62, 2177-2182.
De Clercq Eva, Badarau Domnita Oana, Ruhe Katharina M., Wangmo Tenzin (2014), Body matters: rethinking the ethical acceptability of non-beneficial clinical research with children, in Medicine, Health Care and Philosophy
, 18(3), 421-431.
Ruhe Katharina M., Wangmo Tenzin, Badarau Domnita O., Elger Bernice S., Niggli Felix (2014), Decision-making capacity of children and adolescents—suggestions for advancing the concept’s implementation in pediatric healthcare, in European Journal of Pediatrics
, 174(6), 775-782.
Ruhe Katharina M., Badarau Domnita O., Elger Bernice S., Wangmo Tenzin (2014), End-of-life decision making in pediatrics: Literature review on children's and adolescents' participation, in AJOB Empirical Bioethics
, 5(2), 44-54.
De Clercq Eva, Badarau Domnita Oana, Ruhe Katharina M., Wangmo Tenzin (2014), Erratum to: Body matters: rethinking the ethical acceptability of non-beneficial clinical research with children [Med Health Care and Philos, DOI 10.1007/s11019-014-9616-3], in Medicine, Health Care and Philosophy
, 18(3), 433-433.
ETHICAL ISSUES OF END-OF-LIFE DECISION MAKING: End-of-life decisions involving minors incorporate difficult choices that demand a complex and holistic approach from medical, social, ethical and legal perspectives. Research exploring the autonomy of children or adolescents in these situations is scarce. In many cases, minor's competency to refuse treatment at the end-of-life is questioned. Such treatment decisions for minors are made by their parents and/or physicians who refer to the best-interest of the minor. Although many believe that children and adolescents who live with chronic illnesses are able to understand their condition and the outcomes of an end-of-life decision, they are rarely given the option to voice their concerns and make their own choices. STUDY PURPOSE: The purpose of this mixed methods study is to investigate the possibility of including a child or adolescent 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 Swiss paediatric oncology situations and qualitative one-on-one interviews will help evaluate motives and attitudes of parents, primary oncologists and minors themselves when making these very difficult choices. STUDY METHODOLOGY: Participants will be recruited from the Swiss Paediatric Oncology Group (SPOG) affiliated paediatric centres in Aarau, Basel, Bern, Bellinzona, Geneva, Luzern, St. Gallen and Zurich. The quantitative data will be captured on each case of childhood cancer diagnosed and/or treated during the study period. This data will be gathered from physicians and residents of the participating SPOG centres, and corresponding parents of the patient. They comprise our survey study participant (SSP). Data will be collected at three time points, the first T1 at diagnosis or first treatment and two follow-ups (T2 and T3, where possible). In-depth information on this topic will be obtained using 60 interviews from our interview study sample (ISP). Twenty interviews will be held with children/adolescents aged 9 - 17, suffering from severe and possibly life threatening cancer. Half of our patient ISP sample will be recruited at the time of diagnosis from the SPOG centres and the other half from those who are in a stage of palliative care. The remaining 40 interviews will include the minors’ parents (n=20) and primary oncologists (n=20). Participants will be interviewed using a semi-structured interview guide and a short closed-ended questionnaire. The semi-structured interview will decipher various concerns, values and attitudes concerning end-of-life decision making and the extent of the child’s or adolescent’s involvement in such decision making processes. Study results will be analysed both quantitatively using SPSS and qualitatively using basic qualitative techniques and Atlas.ti. IMPORTANCE AND IMPACT OF THE STUDY: We expect that the findings of this study will contribute significantly to the field of end-of-life decision making. The study will improve our understanding and assessment of children's and adolescents’ autonomy, delineate the extent to which a minor could be integrated into a decision making process, provide a much needed well rounded data on the issue thereby becoming a critical informational source for practitioners, researchers, ethicists and policy makers. Finally, we hope the study will be a stepping stone for future research and contribute to the political and social discussions concerning autonomy of a minor in health care decision making, nationally and internationally.