A nursing professor at Vancouver Island University is spearheading a significant study focused on the inequities faced by patients contemplating medical assistance in dying (MAID). Professor Caroline Variath aims to create and assess a community-based support program that will assist patients and their families during this challenging time.
Recently awarded the Health Professional Investigator Award from Michael Smith Health Research B.C., Variath”s five-year project is titled “Building Community Capacity to Support Patients and Families Considering and Receiving MAID.” She explained that the central objective of her research is to enhance the quality of life for individuals who choose MAID.
According to Variath, the project involves collaboration with patients and community stakeholders to gain insights into the experiences of those in the MAID program, along with their families and healthcare providers. This understanding will help identify available community resources on Vancouver Island for these patients.
The findings will contribute to the design and evaluation of a peer navigation program, where trained volunteers offer essential support to those considering MAID. Variath noted that previous studies conducted by her team revealed that patients and their families often experience unmet care needs stemming from social determinants of health, including social isolation, housing instability, and limited access to health and social services.
The research project comprises three main components. The first focuses on identifying the emotional needs of families with loved ones who have requested MAID but do not have a foreseeable natural death. This will involve conducting in-depth interviews. The second component seeks to examine the care requirements and resources available to individuals facing health and social inequities while requesting MAID. Both of these components are currently in progress.
The third and final aspect of the project is to develop and assess a community-based program that provides ongoing support for individuals seeking MAID and experiencing health and social disparities. The program will address various health and social needs.
Variath emphasized the importance of recognizing that end-of-life care encompasses not just medical considerations but also social factors. By fostering support networks within the community, the initiative aims to enhance the quality of life for patients in the MAID program while alleviating the health and social challenges they may encounter, as well as supporting their families. This initiative is intended to complement existing support from healthcare providers.
Often, Variath pointed out, healthcare professionals who care for patients requesting MAID feel compelled to provide support beyond their official roles. Clinicians may try to assist patients in navigating the various services available to them, but this can be inadequate and time-consuming. The community-based approach aims to bridge this gap effectively.
Barriers to equity can include a lack of access to primary care physicians or guidance on social services, as well as challenges in making end-of-life arrangements like wills or funeral services. Variath noted that while patients connected to a palliative care team may receive comprehensive support in preparing for death, those outside of such networks often lack the necessary resources.
To build upon existing tools, Variath plans to utilize programs like Nav-CARE, 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 unique, particularly regarding their family members.
As part of her initiative, Variath intends to adapt available toolkits and develop specialized educational materials to train peer navigators. This training will prepare them to provide personalized support to patients who could benefit from peer assistance.
Variath”s commitment to end-of-life care stems from her experiences as a nurse in critical and acute care settings, where she observed the tendency of healthcare to focus predominantly on prolonging life. While this focus is undoubtedly important, she believes it is equally vital to consider what quality of life means for patients and how to empower them to make informed choices as they approach the end of their lives.
