Congratulations to Dr. Eric Racine, Director of the Pragmatic Health Ethics Research Unit at the Montreal Clinical Research Institute (IRCM), who recently published a new study promoting a better understanding of the moral issues facing adults living with a rare disease.
Rare Diseases: Still Little-Known Realities
Although by definition, “rare diseases” affect individually less than one person in 2,000, taken as a whole, these rare diseases which number in the thousands, affect one person in twelve in Canada. Their impact on the daily lives of those affected remains poorly understood, even within the healthcare community. And yet, the moral challenges and issues associated with them remain a complex and tangible reality for those who face them, whether in terms of delayed diagnosis, and/or access to appropriate, personalized and affordable care.
In order to help establish a framework for reflection, aimed at improving the care and well-being of people living with a rare disease, Dr. Racine's team sought to elucidate the moral challenges represented in the qualitative literature, by identifying the dimensions and problematic situations of a moral nature specific to these diseases in adults.
An In-Depth Study
Based on an in-depth study of the qualitative literature, the team carried out a thematic and interpretative analysis using a pragmatic and social ethics approach. By taking into account the experience of the people concerned, this approach enables a more complete vision of the challenges, and above all, a more holistic understanding of the reality of those affected.
As a result of this important analysis, a number of moral challenges linked to rare diseases were identified: ineffective communications around diagnosis, non-participatory decision-making and lack of holistic support. In addition, certain moral problems encountered in the context of rare diseases in adults were also identified: Internal tensions caused by misunderstandings and disempowerment over experienced situations, particularly when clinical support is lacking. The team also demonstrates how these moral challenged are present throughout the four phases of the medical trajectory, i.e. 1) the odyssey leading to diagnosis, 2) the diagnosis, 3) the clinical care and, 4) the medical follow-ups.
“By identifying the challenges and categorizing them, we make possible a new dimension of reflection around these issues, whose impact on the lives of thousands of people is substantial. We are putting your finger on the problems in order to better explore solutions,” explained Dr. Racine.
About Pragmatic Health Ethics
The pragmatic approach promotes the development of individuals and their understanding of moral issues in the context in which they live. This approach focuses on the links between theory and practice, and is intellectually rooted in the work of the pioneering American philosophers and scientists associated with this school of thought.
Partly grounded in a modern pragmatic theoretical framework, the Pragmatic Health Ethics Unit at IRCM values the importance of understanding problematic situations from the perspective of stakeholders. This type of knowledge empowers individuals by engaging them collectively in the resolution to the problems they face, through deliberative, evidence-informed processes.
