Abstract
Background: The global burden associated with chronic diseases (CD) continues to complexify and to grow worldwide. Integrated care is recognized as a key solution to better meet the needs of people living with CD and to improve health system efficiency. Policymakers responsible for organization of health services for CD are confronted with many difficult choices, especially with the widening gap between the population’s needs and the system’s capacity to respond to them. This context raises several ethical dilemmas and shows a high potential to compromise key values underpinning health systems. Our objective is to delve ethical considerations to guide the updating of ministerial guidelines for preventing and treating CD in primary care in Quebec, Canada. Approach: We first reviewed the scientific literature to identify values and ethical principles related to CD health services organization. Second, we developed the ethical analysis based on the five-steps method proposed by bioethicist Doucet (2008). By leveraging complementary expertise (integrated care, clinical ethics, health policy ethics), we preliminary focused on describing the situation, identifying and connecting relevant documents (laws, scientific literature, moral principles and norms, values), and delving deeper into three ethical issues.
Results: The first issue concerns the definition and delimitation of CD (epistemological issue), which have a direct impact on access to services. Rather than thinking about access criteria in terms of diseases, we should be thinking about possible adaptations of practices and organizational models centered on the whole person and their needs, to better respond to the contemporary understanding of CD etiology (multimorbidity). The second ethical issue concerns scientific uncertainty and political responsibility for choosing the best interventions to implement (scientific issue). The complexity of both the system and the socio-political environment underlines the importance of a diversity of research methods and knowledge (scientific, tacit) to better understand the systemic context in which interventions are implemented, the actors’ viewpoints and the levers for action. The third ethical issue relates to resource allocation and social justice (political issue). To tackle the root causes of CD and reduce social inequalities in health, policymakers are faced with morally difficult strategic choices in allocating resources impartially and equitably. Community development and democratic engagement, supported by political engagement and a culture of accountability, are some of the keys to improved health equity.
Implications: Shared values and vision are essential to mobilize all actors towards a common goal and to actualize a more integrated healthcare system that meets the needs of people living with CD. The ethical values outlined provide a framework for conducting an ethical deliberation with stakeholders (patients, managers, policymakers, etc.), to enrich the ethical analysis and generate valuable, context-specific solutions to guide policymakers. The deliberative process offers the possibility of strengthening patients and public engagement in co-creating new public policies on CD. This ethical analysis lays groundwork for any policymakers concerned by the CD challenge, leading them to a new role – ethical mediator – to facilitate the identification of shared values and coherent solutions towards better integrated care.