Ethical challenges and opportunities in communicating about cancer: experiences and outcomes of information sharing between physicians, parents and pediatric patients

Treatment improvements for childhood cancer have resulted in high survival but the ardor of therapy and care experiences, physically and emotionally affect parents and patients. Relationships with clinicians play an important role for supporting families in achieving improved outcomes. Communication is at the center of building trust and ensuring understanding of information for permission for treatment, which is both an ethical and legal requirement. However, processes are many times reduced to exchanges rather than sharing of information and there are shortcomings in physician training in efficient and empathic communication. This work discusses communication in medical encounters during cancer treatment and explores the importance of microethics, the everyday actions and interactions, for improving understanding and information sharing. A model of exploration of illness and experiences is proposed for daily use in the clinic to remedy difficulties in diagnosis disclosure and decision-making. This model can facilitate later communication for poor prognosis and discussions on research participation and end-of-life care. The thesis starts with a general introduction on issues in cancer care, normative aspects of decision-making in pediatrics, ethical suggestions for patient participation and difficulties of implementation in clinical practice. Subsequent chapters draw from two studies conducted in Swiss and Romanian pediatric oncology units to address issues related to parental and physician experiences during communication and challenges with involving children and adolescents in their care.