Processus décisionnel face aux soins critiques chez les enfants à haut risque de mortalité ou de séquelles graves : étude de la communication parents-soignants et intégration des valeurs médicales, parentales et sociétales


Line Guénette

Centre de recherche du Chu Ste-Justine


Domaine : santé de la mère, des enfants et des adolescents

Programme chercheurs-boursiers cliniciens - Junior 2

Concours 2014-2015

Intensive care now enables many children to survive. However, many life-threatening conditions or medical interventions often lead to potentially serious disability. Parents make healthcare decisions for their children. In tragic circumstances, they often have to decide whether intensive care (with uncertain survival and a risk of disability) is superior to palliative care; or whether to start, continue or stop life sustaining machines or interventions. The interpretations of risks, benefits, and outcomes has been shown to be dependent on the values of individuals. Doctors inform parents and generally give them medical statistics to help them make intensive care decisions. But the values of doctors will influence these statistics. I have demonstrated that the variation of opinions of healthcare providers lead to a wide variation of practice in life and death decisions. For example, providers are more likely to recommend palliative care for neonates than for older patients. Furthermore, parents of disabled children with life-limiting conditions consider the quality of life of their children and families far more positively than doctors.

My future research will examine how healthcare-providers analyze the best interests of their patients and make intensive care decisions. I will also examine the impact these decisions have on parents and families, as well as their experiences in the healthcare system. I will develop a communication tool and scale to improve communication skills of providers and to ensure adequate teaching.

We have the privilege and the power to save lives, but, in doing so, we have a significant impact on the quality of life of children and their families. My goal is for healthcare-providers to be able to inform and counsel parents in a way that is most useful to them. If communication about intensive-care decisions is optimal, this will lead to improved decision-making and optimal life trajectories for sick children.