Shared Decision-Making and Best Interests with Parents, Families and Children

Current Subprojects:

  1. "Reconciling Best Interests and Shared Decision-Making in Paediatrics (Introducing the Shared Optimum Approach)"
  2. "Narratives on ECMO in peadiatric"
  3. "Decision-Making and Narratives in Inoperable Brain Tumors in Childhood"
     

Short description

Paediatric decision-making is the art of respecting the interests of child and family with due regard for attitudes and facts. The best interest standard (BIS) and shared decision-making (SD-M) are increasingly used in the same context but are generally believed to conflict with each other. Simply said the BIS determines what is best for a person without decision-making capacity, while SD-M is concerned primarily with how a decision is best made by someone with decision-making capacity.

Based on a extensive qualitative and quantitative data set and underpinned with examples from clinical practice in pediatric palliative care, pediatrics and rare disease we study the realtionship between both concepts as part of clinical reasoning and introduce the shared optimum approach (SOA).

In a subproject regarding "Narratives on ECMO in peadiatric" we study the aspect of futility and the technological imperative on health care providers in the context of extracorporeal membrane oxygenation (ECMO).

In a subproject on "Decision-Making and Narratives in Inoperable Brain Tumors in Childhood" we study the role of parents and health care providers in extremely difficult, futile decision-making situations at the example of inoperable braintumors in childhood. Based on a mixe-method study we try to describe the decision-making process, the significance of concepts such as best interests and the outcome of decisions such as palliative radiation.
 

Lead:

Dr. med., Dr. sc. med. Jürg Streuli, Institute of Biomedical Ethics and History of Medicine and University Children's Hospital Zurich

Collaborating researcher and institutes

  • PD Dr. Eva Bergsträsser, Pediatric Palliative Care, University Children's Hospital Zurich and and Children's Research Center
     
  • Prof. Vincenzo Cannizzaro, Pediatric Intensive Care Unit, University Children's Hospital Zurich and and Children's Research Center
     
  • Prof. Michael Grotzer, Department of Oncology, University Children's Hospital Zurich and and Children's Research Center
     
  • Prof. Markus Landolt, Department of Psychology, University Children's Hospital Zurich and and Children's Research Center
     

Involved PaediEthics-group researchers

Lead: Jürg C. Streuli
PhD-Student (2017-): Sarah Eaton
PhD-Student (past): Manya Hendricks
MD-Student (2016-): Jovana Jucker
Research assistant (2018-): Lara-Lynn Hautle
MA-Student (past): Lara-Lynn Hautle, Janne Hüls, Stephanie Meyer, Sophia Weiland
 

Funding

Currently, this research is supported by the Starr international Foundation and the University Children's Hospital Zurich and Children's Research Center

Associated publications

  • Streuli, J. C., Widger, K., Medeiros, C., Zuniga-Villanueva, G., & Trenholm, M. (2019). Impact of specialized pediatric palliative care programs on communication and decision-making. Patient Education and Counseling, S0738399118304142. Link
     
  • Bucher, H. U., Klein, S. D., Hendriks, M. J., Baumann-Hölzle, R., Berger, T. M., Streuli, J. C., Fauchère J.C. on behalf of the Swiss Neonatal End-of-Life Study Group. (2018). Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses. BMC Pediatrics, 18(1). Link
     
  • Hendriks, M. J., Klein, S. D., Bucher, H. U., Baumann-Hölzle, R., Streuli, J. C., & Fauchère, J.-C. (2017). Attitudes towards decisions about extremely premature infants differed between Swiss linguistic regions in population-based study. Acta Paediatrica, 106(3), 423–429.
     
  • Huber, J., Streuli, J. C., Lozankovski, N., Stredele, R. J., Moll, P., Hohenfellner, M., … Peters, T. (2016). The complex interplay of physician, patient, and spouse in preoperative counseling for radical prostatectomy: A comparative mixed-method analysis of 30 videotaped consultations. Psycho-Oncology, 25(8), 949–956.
     
  • Streuli, Jürg C, Bergsträsser Eva. (2015). Shared Decision Making in der Pädiatrie. Paediatrica, 26: 1–4
     
  • Streuli, Jürg C. "The Concept of Best Interests in Clinical Practice." In: The Nature of Children's Well- Being. Springer Netherlands, 2015. S. 179-190.
     
  • Streuli, J. C. (2014). Verweigerung der Behandlung eines Kindes aus religiösen Gründen. In B. S. Elger, N. Biller-Andorno, & B. Rütsche (Eds.), Ethik und Recht in Medizin und Biowissenschaften: Aktuelle Fallbeispiele aus klinischer Praxis und Forschung (pp. 133–147). Retrieved from Link
     
  • Streuli, J. C., Vayena, E., Cavicchia‐Balmer, Y., & Huber, J. (2013). Shaping Parents: Impact of Contrasting Professional Counseling on Parents’ Decision Making for Children with Disorders of Sex Development. The Journal of Sexual Medicine, 10(8), 1953–1960. Link