A nursing professor at Vancouver Island University is conducting research focused on enhancing support for patients considering medical assistance in dying (MAID) and their families. Professor Caroline Variath has received the Health Professional Investigator Award from Michael Smith Health Research B.C. for her five-year initiative titled “Building Community Capacity to Support Patients and Families Considering and Receiving MAID.”
Variath stated that her research aims to improve the quality of life for individuals who choose MAID. By collaborating with patients and community stakeholders, the project seeks to gain insights into the experiences of those involved in the MAID process, including patients, families, and healthcare providers. The research will also assess the community resources accessible to these patients on Vancouver Island.
The findings will inform the development and evaluation of a community-based peer navigation program, where trained volunteers will provide essential support. Variath noted that earlier studies conducted by her team revealed that patients and their families frequently encounter unmet care needs and challenges related to social determinants of health, such as social isolation, housing insecurity, and limited access to health and social services.
The project consists of three components. The first involves understanding the emotional needs of families whose loved ones have requested MAID, particularly when a natural death is not imminent. This will be achieved through comprehensive interviews. The second component focuses on identifying the care needs and resources available to those who are facing health and social inequities while seeking MAID. Both of these aspects are currently in progress.
The final component aims to create and evaluate a community-based program that offers continuous support for individuals seeking MAID while confronting health and social inequities on Vancouver Island. The support services will encompass various health and social needs.
Variath emphasized that end-of-life care extends beyond medical concerns and is also a social issue. By establishing supportive networks within communities, the initiative aspires to enhance patients” quality of life, mitigate health and social challenges associated with the MAID program, and assist families. This effort aims to supplement the support already provided by healthcare professionals.
Often, the medical teams caring for patients who request MAID take on the responsibility of providing additional support outside their professional duties. Variath explained that when clinicians receive requests from patients needing navigational assistance, they may attempt to provide that help, but such efforts can be insufficient and time-consuming. The objective of this community-based approach is to bridge these gaps in support.
Inequities may manifest as a lack of access to a family doctor or social services, or in the inability to prepare a will or arrange funeral services. Patients linked to palliative care teams typically have access to resources that aid in preparing for their death. However, those not connected to palliative care may miss out on essential preparations.
Variath plans to utilize existing tools such as the Nav-CARE program, which employs specially trained volunteer navigators to support individuals with declining health in accessing community resources and services while providing companionship and emotional support. She acknowledged that the needs of patients in the MAID program may be distinct, including the needs of family members.
To address these specific requirements, Variath intends to adapt existing toolkits and develop tailored educational materials to train peer navigators. The goal is to establish a program whereby these navigators can identify patients who would benefit from peer support and provide one-on-one assistance.
Variath”s interest in end-of-life care stems from her experiences as a nurse in critical and acute care environments, where she observed that healthcare often prioritizes extending life. While this aspect is crucial, she believes that the focus should also include the quality of life for patients and the nature of end-of-life care, empowering individuals to make their own choices during this stage.
