Decision trajectories of patients at the end of life: An epidemiological exploration of MAID and the impact on caregivers and clinicians

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Project Summary Abstract Patient facing advanced serious illness have many complex decisions to make regarding their medical care. The range of options spans the most aggressive life prolonging care to care that is focused mainly on comfort. In 1997, the Death with Dignity Act was passed legalizing Medical Aid in Dying (MAiD) for the state of Oregon. Since that time, 11 other states have passed MAiD laws and 12 others are considering similar legislation. Yet despite the widespread access patients may have to this option, there is a paucity of research about patient’s experiences with decision making around MAiD and how aging may affect these decisions. We also lack data about the experiences and outcomes for caregivers, and the experiences of clinicians who are involved in the care of patients pursuing MAiD. To address these critical gaps in our understanding, we propose to conduct a longitudinal cohort study of patients who are pursuing MAiD from a national sample as well as their caregivers and clinicians. Aim 1: To understand quantitative and qualitative outcomes of seriously ill older and younger persons pursuing MAID and the patient-level factors that are associated with subsequently using MAiD. Aim 2: To understand the quantitative and qualitative outcomes of caregivers of older and younger patients pursuing MAiD. Aim 3: To qualitatively examine the attitudes and experiences of clinicians prescribing and caring for patients considering MAiD. This research is highly innovative because we will capture a national cohort of patients pre-MAiD as well as their caregivers and follow them forward. We bring together a highly experienced and multi-disciplinary team of investigators who have a demonstrated track record of collaboration and expertise across palliative care research and bioethics. Without understanding the diverse perspectives of patients, caregivers, and clinicians, we are unable to create or implement interventions to support these populations. Given the broad population that has access to MAiD, epidemiologic, experiential, and decision-making characteristics of individuals considering and pursuing MAiD may be critical to inform evidence-based policies and practices.