Rethinking Data Collection in Medical Aid in Dying: Quality Improvement as the North Star

Abstract

Medical aid in dying is an evolving practice in the United States. This article advocates for a robust data collection system. Current systems largely depend on self-reported data from providers susceptible to biases and inconsistencies. Vital data points, such as costs, reasons for denials of aid-in-dying requests, and clinical complications, are rarely collected. Other data are collected but not reported, such as whether patients were undergoing palliative care at the time of their aid-in-dying request or where the state has lost track of the patient's aid-in-dying status or has incomplete information. Missing data undermines oversight and inhibits public transparency. Furthermore, the costs of data collection, including risks to patient confidentiality and administrative burdens on clinicians, are often neglected. To chart a path forward, this paper proposes a quality improvement-focused approach to reconcile the costs and benefits of data collection with the broader objectives of ensuring patient safety and access to aid in dying. The feedback loop established by a quality improvement-driven approach can provide a robust framework for optimizing aid-in-dying patient care. We propose that state and private aid-indying organizations standardize data collection and reporting systems, preferably using a quality improvement approach, to better understand and improve U.S. aid-in-dying practices.

Keywords: Medical Aid in Dying, End-of-life Care, Quality Improvement, Data Collection, Oversight, Data Reliability