Medical Assistance in Dying: Patients', Families', and Health Care Providers' Perspectives on Access and Care Delivery.

Abstract

Background: Medical assistance in dying (MAID) became legal in Canada in 2016. Although the legislation is federal, each province is responsible for establishing quality care. Objective: To explore patient, family, and health care provider (HCP) perspectives on MAID access and care delivery and improve regional MAID care delivery. Design: Qualitative exploratory. Setting/Subjects: We interviewed 5 patients (4 met the legislated MAID criteria and 1 did not), 11 family members (4 spouses, 5 children, 1 sibling, and 1 friend), and 14 HCP (3 physicians, 4 social workers, and 7 nurses) from June to August 2017. Measurement: Semistructured interviews, content analysis, and thematic summary. Results: Patients, families, and HCPs highlighted access and delivery concerns regarding program sustainability, care pathway ambiguity, lack of support for care choices, institutional conscientious objection (CO), navigating care in institutions with a CO, and postdeath documentation. Patients and families expressed additional concerns regarding lack of ability to provide advanced MAID consent, and the requirement of independent witnesses on MAID request forms and consent immediately before MAID administration. HCPs were additionally uncertain about professional roles and responsibilities. Ten recommendations to improve regional MAID care and the resultant practice change are presented. Conclusion: Quality improvement (QI) processes are essential to devise an accessible dignified patient- and family-centered MAID program. Ensuring patient and family perspectives are integrated into QI initiatives will assist programs in ensuring the needs of all are considered in structuring and staffing a program that is accessible, easy to navigate, and provides dignified end-of-life care in supportive and respectful work environments.