Identifying gaps and inconsistencies in the data collection and public reporting of Medical Assistance-in-Dying: a directed content analysis
Saturday, October 14, 2023
7:30 AM – 8:45 AM ET
Location: Bristol (Third Floor)
Introduction: Data collection and public reporting serve as the primary tools in the monitoring of Medical Assistance-in-Dying (MAiD), yet critical differences between the data management practices across jurisdictions reveals inconsistencies and gaps. Comparing different data management practices can help establish best practices to ensure patient safety, autonomy, and practice transparency.
Methods: We conducted a directed content analysis of data collection forms and public reports on MAiD of all legal jurisdictions. Documents were compared inter-jurisdictionally to identify discrepancies in data management and intra-jurisdictionally to identify gaps between data collection and reporting.
Results: We found heterogeneity in the length of forms and the frequency of public reporting. There is considerable variation in which data points are collected by jurisdictions, including on information regarding MAiD requests, access to social supports, and clinical complications. While we found jurisdictions make the majority of their collected data available to the public, there are some notable exceptions, including the presence of comorbidities (including psychiatric diagnoses), the involvement of kin in decision-making, what medications were used and whether they were disposed of properly.
Conclusions: Gaps in data on access to social supports and clinical complications prevents researchers and policymakers from ensuring best practices are employed to promote patient safety. Inconsistencies raise questions about the balance between patient and physician privacy and the needs of researchers and regulators to monitor the practice. The lack of transparency between data collection and reporting allows misinformation to plague efforts to improve the practice.