Attitudes and motives concerning end-of-life decisions: competency and autonomy of children and adolescents in paediatric oncology
Third-party funded project
Project title Attitudes and motives concerning end-of-life decisions: competency and autonomy of children and adolescents in paediatric oncology
Principal Investigator(s) Elger, Bernice Simone
Co-Investigator(s) Kühne, Thomas
Niggli, Felix
Project Members Ruhe, Katharina
Badarau, Domnita
Wangmo, Tenzin
De Clercq, Eva
Rost, Michael
Pacurari, Nadia
Organisation / Research unit Ethik / Bio- und Medizinethik (Elger)
Project Website
Project start 01.05.2012
Probable end 31.08.2017
Status Completed

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.

Keywords Ethics, informed consent
Financed by Swiss National Science Foundation (SNSF)

Published results ()

  ID Autor(en) Titel ISSN / ISBN Erschienen in Art der Publikation
2362370  Ruhe Katharina M; Badarau, Domnita O; Elger, Bernice S; Wangmo, Tenzin  End-of-life decision making in pediatrics: literature review on children's and adolescents' participation  2329-4515  AJOB empirical bioethics  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
2745760  Badarau, Domnita O.; Nast, Rebecca L.; Shaw, David M.  The vulnerability of the individual benefit argument  1526-5161  The American journal of bioethics  JournalItem (Kommentare, Editorials, Rezensionen, Urteilsanmerk., etc. in einer wissensch. Zeitschr. 
2779938  Ruhe, Katharina M.; Wangmo, Tenzin; Badarau, Domnita O.; Elger, Bernice S.; Niggli, Felix  Decision-making capacity of children and adolescents : suggestions for advancing the concept's implementation in pediatric healthcare  1432-1076  European journal of pediatrics  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
3659206  Wangmo, T.; De Clercq, E.; Ruhe, K.; Beck-Popovic, M.; Rischewski, J.; Angst, R.; Ansari, M.; Elger, BS.  Better to know than to imagine: Including children in their health care  2329-4515 ; 2329-4523  AJOB Empirical Bioethics  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
3659208  Ruhe, KM.; Wangmo, T.; De Clercq, E.; Badarau, DO.; Ansari, M.; Kühne, T.; Niggli. F.; Elger, BS  Putting patient participation into practice in pediatrics-results from a qualitative study in pediatric oncology.    European Journal of Pediatrics  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
3659210  Ruhe, KM.; De Clercq, E.; Wangmo T.; Elger BS.  Relational Capacity: Broadening the Notion of Decision-Making Capacity in Paediatric Healthcare.    The Journal of Bioethical Inquiry  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
3659213  Badarau, D. O.; Ruhe, KM.; Kühne, T.; De Clercq, E.; Anca, C.; Elger, BS.; Wangmo, T.  Decision making in pediatric oncology: Views of parents and physicians in two European countries  2150-7724 ; 2150-7716  AJOB Empirical Bioethics  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
3669344  Wangmo, Tenzin; Ruhe, Katharina M.; Badarau, Domnita O.; Kühne, Thomas; Niggli, Felix; Elger, Bernice S.; Swiss Paediatric Oncology Group,  Parents' and patients' experiences with paediatric oncology care in Switzerland--satisfaction and some hurdles  1424-7860 ; 1424-3997  Swiss medical weekly  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
4021478  Rost, M.; Wangmo, T.; Niggli, F.; Hartmann, K.; Hengartner, H.; Ansari, M.; Brazzola, P.; Rischewski, J.; Beck-Popovic, M.; Kühne, T.; Elger, B.  Parents’ and Physicians’ Perceptions of Children’s Participation in Decision-making in Paediatric Oncology: A Quantitative Study    Journal of Bioethical Inquiry  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
4082980  De Clercq, Eva; Rost, Michael; Pacurari, Nadia; Elger, Bernice; Wangmo, Tenzin  Aligning guidelines and medical practice: Literature review on pediatric palliative care guidelines  1478-9515 ; 1478-9523  Palliative & supportive care  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
4021472  Rost, M.; De Clercq, E.; Wangmo, T.; Elger, B  The Need for a Shared Understanding: Domains of Care and Composition of Team in Pediatric Palliative Care Guidelines    Journal of Hospice & Palliative Nursing  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
4348492  Rost, Michael; Acheson, Elaine; Kühne, Thomas; Ansari, Marc; Pacurari, Nadia; Brazzola, Pierluigi; Niggli, Felix; Elger, Bernice; Wangmo, Tenzin  Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records    Supportive Care in Cancer  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 

Cooperations ()

  ID Kreditinhaber Kooperationspartner Institution Laufzeit - von Laufzeit - bis
1016834  Elger, Bernice Simone  Kühne, Thomas, Prof. Dr. med., Co-Referee  Onkologie/Hämatologie, Universitäts-Kinderpital beider Basel  01.06.2011  31.12.2014 
1544131  Elger, Bernice Simone  Niggli, Felix, Prof.  University of Zurich  01.06.2011  30.04.2015 
1544132  Elger, Bernice Simone  Wilfond, Benjamin, Prof.  University of Washington School of Medicine, Seattle  01.06.2011  30.04.2015 
1544133  Elger, Bernice Simone  Ross, Lainie, Prof.  The University of Chicago Medicine, Chicago  01.06.2011  30.04.2015 
1544177  Elger, Bernice Simone  Ansari, Marc, MD  Pédiatre FMH Oncologue et Hématologue, Hôpital Cantonal de Genève  01.05.2012  30.04.2015 
1544183  Elger, Bernice Simone  Hengartner, Heinz, MD  Ostschweizer Kinderspital St. Gallen  01.05.2012  30.04.2015 
1544191  Elger, Bernice Simone  Rischewski, Johannes, MD  Onkologie, Kinderspital Luzern  01.05.2012  30.04.2015 

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