A nursing professor at Vancouver Island University is conducting research to address the inequities faced by patients considering medical assistance in dying (MAID). Professor Caroline Variath has received the Health Professional Investigator Award from Michael Smith Health Research B.C. for her five-year project titled “Building Community Capacity to Support Patients and Families Considering and Receiving MAID.”
Variath explained that her research focuses on enhancing the quality of life for patients who opt for MAID. The initiative aims to collaborate with patients and community partners to better understand the experiences of both patients in the MAID program and their families, as well as health-care providers. It will also examine the available community resources on Vancouver Island for these individuals.
The insights gained from this research will inform the design and evaluation of a community-based peer navigation program. Volunteers will be trained to provide essential support to patients and their families. Variath noted that previous studies conducted by her team revealed that many patients and their families experience unmet care needs and face challenges related to social determinants of health, including social isolation, housing instability, and limited access to health and social services.
The project consists of three components. The first component aims to identify the emotional needs of families whose loved ones have requested MAID and whose natural death is not imminent. This will involve conducting extensive interviews. The second component focuses on exploring the care needs and available resources for those confronting health and social inequities and seeking MAID. Both of these components are currently in progress.
The final component of the project will develop and assess a community-based program designed to provide ongoing support for individuals pursuing MAID who are also dealing with health and social disparities on Vancouver Island. The services offered will encompass both health and social needs.
Variath emphasized that end-of-life care encompasses more than just medical considerations; it is also a social issue. By establishing support networks within communities, the research aims to enhance the quality of life for patients in the MAID program and alleviate some of the health and social challenges they may face, while also supporting their families.
She pointed out that often, the medical teams responsible for patients requesting MAID take on the additional burden of providing support outside of their official duties. When a clinician receives a request for navigational assistance, they may feel compelled to address it themselves, which can be both inadequate and time-consuming. The goal of this community-based approach is to bridge that gap.
Variath noted that inequities can manifest in various ways, such as lack of access to a family doctor or social services, as well as the inability to make a will or arrange funeral services. While patients connected to palliative care teams have access to support in preparing for their deaths, those not linked to such services often do not receive the necessary preparation.
To aid her efforts, Variath plans to utilize existing tools like the Nav-CARE program, which trains volunteers to assist individuals with declining health in accessing community resources and services, while also providing companionship and emotional support. She acknowledged that the needs of patients in the MAID program may be distinct, especially considering the requirements of their family members.
Thus, Variath intends to adapt the existing toolkits and develop specialized educational materials to train peer navigators. This program will ensure that these navigators are informed about patients who could benefit from peer support and equip them to offer personalized assistance.
Her interest in end-of-life care stems from her experiences as a nurse in critical and acute care settings, where she witnessed the healthcare system”s focus on prolonging life, occasionally at the expense of considering what quality of life means for patients and how end-of-life care could empower them to make their own choices.
