A nursing professor at Vancouver Island University, Caroline Variath, is conducting research focused on improving the support available for patients and families considering medical assistance in dying (MAID). Her study emphasizes the need for a community-based support program that addresses the inequities these individuals often face.
Recently, Variath was awarded the Health Professional Investigator Award from Michael Smith Health Research B.C. to fund her five-year project titled “Building Community Capacity to Support Patients and Families Considering and Receiving MAID.” She explained that her research aims to enhance the quality of life for patients who opt for MAID.
In her discussions with the News Bulletin, Variath highlighted the importance of understanding the experiences of patients in the MAID program, their families, and health-care providers. This research will also assess the community resources accessible to these patients on Vancouver Island.
Utilizing the findings from previous studies conducted by her team, which identified unmet needs among patients and their families, Variath seeks to explore various social determinants of health. These include issues such as social isolation, housing insecurity, and limited access to necessary health and social services.
The project consists of three primary components. The first aims to grasp the emotional needs of families who have loved ones requesting MAID, particularly when a natural death is not imminent. This will involve in-depth interviews. The second component focuses on identifying the care requirements and resources for those facing health and social inequities who are considering MAID. Both of these elements are currently in progress.
The final component will establish and evaluate a community-based program that provides ongoing support to individuals seeking MAID while confronting health and social inequities on Vancouver Island. The program is designed to address both health and social needs.
Variath emphasized the notion that end-of-life care transcends medical considerations, incorporating significant social elements. By fostering support networks within communities, the initiative aims to enhance the overall quality of life and alleviate health and social challenges faced by patients in the MAID program, all while supporting their families.
Healthcare professionals often find themselves providing support beyond their official duties when patients request assistance navigating the complexities surrounding MAID. Variath noted that although some clinicians might take on these responsibilities, the efforts frequently fall short and are time-consuming. She believes that a community-based approach could effectively bridge these gaps in support.
The inequities patients face can manifest as a lack of access to family doctors or guidance on social services, as well as logistical challenges like drafting a will or arranging funeral services. For those connected to a palliative care team, there are resources to help prepare for death; however, individuals not linked to such services often lack this essential support.
To develop this new program, Variath intends to build on existing resources, such as the Nav-CARE initiative, which employs trained volunteer navigators to support individuals with declining health. These navigators assist in accessing community resources while providing companionship and emotional support. Variath acknowledged that the needs of MAID patients, including those of their family members, may be distinct, which will necessitate tailored educational materials for peer navigators.
Her interest in end-of-life care stems from her experience as a nurse in critical and acute care settings, where she observed how healthcare often prioritizes life extension over quality of life. She aims to shift focus towards empowering patients to make informed choices regarding their end-of-life care.
