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

English title Attitudes and motives concerning end-of-life decisions: competency and autonomy of children and adolescents in paediatric oncology
Applicant Elger Bernice
Number 139283
Funding scheme NRP 67 End of Life
Research institution Institut für Bio- und Medizinethik (IBMB) Universität Basel
Institution of higher education University of Basel - BS
Main discipline Social Paediatrics
Start/End 01.05.2012 - 31.08.2017
Approved amount 442'091.00
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All Disciplines (4)

Discipline
Social Paediatrics
Legal sciences
Psychology
Sociology

Keywords (5)

patient autonomy; end-of-life decision making; attitudes and motives; paediatric end-of-life care; children and adolescents

Lay Summary (German)

Lead
Entscheidungsprozesse am Lebensende bei Minderjährigen sind komplex. Sie erfordern einen vielschichtigen medizinischen, sozialen, ethischen und rechtlichen Ansatz um die jeweiligen Standpunkte zu berücksichtigen. Diese Studie untersucht, inwieweit krebskranke Minderjährige in diese Entscheidungsprozesse miteinbezogen werden können.
Lay summary

Hintergrund
Bis heute fehlt es weitgehend an Studien bezüglich der Rechte von Minderjährigen auf Anhörung und Respektierung ihrer Wünsche in Gesundheitsfragen. Die Studie befasst sich mit Kindern, bei denen kürzlich Krebs diagnostiziert wurde oder die wegen eines Krebsleidens in Behandlung sind. Auch deren Eltern und die behandelnden Ärzte und Ärztinnen werden befragt. Die Studienteilnehmer werden aus Zentren der Schweizerischen Pädiatrischen Onkologie Gruppe (SPOG) ausgewählt. Befragungen mittels Fragebögen sollen die Möglichkeit geben, ein ausführliches Bild davon zu zeichnen, wie aktuell Entscheidungen am Lebensende von Minderjährigen getroffen werden. Darüber hinaus sollen Interviews mit Onkologen, Eltern und den Minderjährigen selbst, Einblicke in die Einstellungen und Motive geben, die mit dieser schweren Entscheidung verbunden sind.

Ziel
Die Studie untersucht, inwieweit krebskranke Minderjährige in Entscheidungsprozesse miteinbezogen werden können, bei denen es um Behandlungen am Lebensende geht. Die Informationen, die im Laufe des Projektes gesammelt werden, sollen die Begleitumstände solcher Entscheidungsprozesse wiedergeben.

Bedeutung
Die Studie soll dazu beitragen, Fragen bezüglich der Autonomie Minderjähriger besser verstehen und einschätzen zu können. Zudem soll sie eine Grundlage dafür schaffen, beurteilen zu können, in welcher Weise und Intensität Minderjährige in Entscheidungsprozesse miteinbezogen werden sollen. Die Studienergebnisse können von praktizierenden Ärztinnen und Ärzten, Forschenden, Bioethikerinnen und -ethikern und politischen Entscheidungsträgern als Leitfaden genutzt werden. Die Studie soll zudem auf nationaler wie internationaler Ebene einen Beitrag zu den Debatten über die Autonomie Minderjähriger leisten, sei es bei Entscheidungen, die ihre Gesundheit im Allgemeinen betreffen oder schwierige Entscheidungen am Lebensende.

Direct link to Lay Summary Last update: 18.06.2013

Lay Summary (French)

Lead
Les décisions en fin de vie de mineurs sont le résultat de réflexions complexes. Elles requièrent une approche aux multiples facettes médicales, sociales, éthiques et juridiques afin de tenir compte des différents points de vue.
Lay summary

Contexte
On ne dispose à ce jour pratiquement pas d’études sur les droits des mineurs d’être entendu et à voir respecté leurs souhaits en matière de santé. Cette étude se penche sur des enfants chez lesquels un cancer a été récemment diagnostiqué ou qui sont déjà sous traitement en raison d’un cancer. Les parents et les médecins traitants sont également interrogés. Les participants sont recrutés dans les centres du Groupe d’Oncologie Pédiatrique Suisse (GOPS). Au moyen de questionnaires l’étude vise à obtenir une image détaillée de la manière dont les décisions relatives à la fin de vie de mineurs sont actuellement prises. . En outre, des entretiens avec les oncologues, les parents et les enfants eux-mêmes visent à obtenir un aperçu des conceptions et des motifs liés à cette prise de décision difficile.

But
L’étude cherche à savoir dans quelle mesure les mineurs atteints d’un cancer peuvent être impliqués dans le processus de prise de décision concernant leur traitement en fin de vie. Les informations collectées au cours de ce projet visent à refléter les circonstances qui accompagnent ce processus de prise de décision.

Portée
Cette étude vise à contribuer à une meilleure compréhension et évaluation des questions relatives à l’autonomie des mineurs. Elle entend de plus créer une base permettant d’apprécier de quelle manière et dans quelle mesure il convient d’impliquer les mineurs dans le processus de prise de décision. Les résultats de l’étude pourront servir de guide aux médecins, chercheurs, experts en bioéthique ainsi qu’aux décideurs politiques. De plus, l’étude entend apporter une contribution aux débats nationaux et internationaux sur l’autonomie des mineurs, que ce soit au sujet de décisions concernant leur santé en général ou de décisions difficiles en fin de vie.

Direct link to Lay Summary Last update: 18.06.2013

Lay Summary (English)

Lead
End-of-life decisions for minors are the result of complex considerations. They require a multi-layered medical, social, ethical and legal approach to consider the different points of view.
Lay summary

Background
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.

Aim
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 de-pict the circumstances and conditions of these decision-making processes.

Significance
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.

Direct link to Lay Summary Last update: 18.06.2013

Responsible applicant and co-applicants

Employees

Publications

Publication
Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records
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, 1.
Aligning Guidelines and Medical Practice: Literature Review on Pediatric Palliative Care Guidelines
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, 1.
Better to know than to imagine: Including children in their health 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.
From choiceless to hard choices: views of parents and oncologists on decision-making in pediatric oncology in two European countries
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.
Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology.
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, 1.
Cancer care in Romania: challenges and pitfalls of children's and adolescents' multifaceted involvement
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.
Parents’ and patients’ experiences with paediatric oncology care in Switzerland – satisfaction and some hurdles
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, w14309.
Participation in pediatric oncology: Views of children and adolescent patients.
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.
Putting patient participation into practice in pediatrics—results from a qualitative study in pediatric oncology
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.
Relational Capacity: Broadening the Notion of Decision-Making Capacity in Paediatric Healthcare
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.
“Chemo-Knights” and “Radio-Robby”: Provision of information in pediatric oncology.
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.
Parents' challenges and physicians' tasks in disclosing cancer to children. A qualitative interview study and reflections on professional duties in pediatric oncology
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.
Body matters: rethinking the ethical acceptability of non-beneficial clinical research with children
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.
Decision-making capacity of children and adolescents—suggestions for advancing the concept’s implementation in pediatric healthcare
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.
End-of-life decision making in pediatrics: Literature review on children's and adolescents' participation
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.
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]
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.

Collaboration

Group / person Country
Types of collaboration
Dr. Johannes Rischewski, SPOG Luzern Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Dr. Regula Angst, SPOG Aarau Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Dr. Maja Beck-Popovic, SPOG Lausanne Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
International collaborators/advisors United States of America (North America)
- in-depth/constructive exchanges on approaches, methods or results
Dr. Heinz Hengartner, SPOG St. Gallen Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Dr. Pierluigi Brazzola, SPOG Bellinzona Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Dr. Marc Ansari, SPOG Geneva Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Badarau, Domnita Oana Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
3rd Congress on paediatric palliative care. A global gathering Poster Uncertainty: A Blessing and a Curse in Progressive Childhood Cancer 16.11.2016 Rome, Italy Elger Bernice; de Clercq Eva;
21st international congress on Palliative Care Individual talk Decision-making in Pediatric Oncology: Prospective Survey Study with Parents and Physicians & o The Missing Stories of Palliative Patients, Parents and Physicians in Pediatric Oncolo-gy 18.10.2016 Montreal, Canada de Clercq Eva; Wangmo Tenzin; Willi-Rost Michael; Elger Bernice;
30th EACME Conference Individual talk The stories of palliative patients, parents and physicians in pediatric oncology 08.09.2016 Leuven, Belgium Wangmo Tenzin; Elger Bernice; de Clercq Eva;
11th congress of the German Society for Palliative Care Individual talk Partizipative Entscheidungsfindung in der pädiatrischen Onkologie 07.09.2016 Leipzig, Germany Elger Bernice; Willi-Rost Michael;
European Society for Philosophy of Medicine and Healthcare (ESPMH) Talk given at a conference Rising above imagination: including children in their healthcare. 19.08.2015 Ghent, Belgium de Clercq Eva; Elger Bernice; Wangmo Tenzin; Ruhe Katharina;
European Cancer Conference Poster Physicians’ attitudes towards patient participation in decision making in the pediatric oncology setting and their assessment of competency-Preliminary findings from a qualitative study. 27.09.2013 Amsterdam, Netherlands Wangmo Tenzin; Ruhe Katharina; Elger Bernice;
European Association of Centers of Medical Ethics Annual Conference Poster The inclusion of children in decision-making at the end-of-life: A review of the literature. 19.09.2013 Bochum, Germany Ruhe Katharina; Wangmo Tenzin; Elger Bernice;
Fachtagung Psychoonkologie Poster Behandlungsentscheidungen in der pädiatrischen Onkologie und die Einbeziehung von Kindern und Jugendlichen - Vorläufige Ergebnisse einer qualitativen Studie mit Patienten und Eltern. 06.06.2013 St. Gallen, Switzerland Ruhe Katharina; Elger Bernice; Wangmo Tenzin;
The 4th EBMT Training Course for Paediatricians and Paediatric Nurses on HSCT in Children and Adolescents: Interactive Educational EBMT PDs Course; ESH.EBMT Talk given at a conference Competency and autonomy of children and adolescents in pediatric oncology decision-making. 23.05.2013 Bucharest, Romania Wangmo Tenzin; Elger Bernice; Ruhe Katharina;
Thinking Ahead - 11th World Congress of Bioethics, International Association of Bioethics Poster Children’s Autonomy in Making Medical End-of-Life decisions. 26.06.2012 Rotterdam, Netherlands Wangmo Tenzin; Elger Bernice;
80th Annual Meeting of the Swiss Society of General Internal Medicine Poster Acute and Chronic Pain Management: An issue of concern in Pediatric Oncology. 23.05.2012 Basel, Switzerland Kühne Thomas; Elger Bernice; Wangmo Tenzin;


Abstract

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.
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