Inequities faced by patients considering medical assistance in dying is at the centre of a study by a nursing professor at Vancouver Island University, who is researching how patients and families can be better supported through a community-based approach.
VIU nursing professor Caroline Variath recently received the Health Professional Investigator Award from the Michael Smith Health Research B.C. for her five-year project, 'Building Community Capacity to Support Patients and Families Considering and Receiving MAID.'
Variath told the News Bulletin that her research is centred on improving the quality of life of patients who opt for medical assistance in dying.
"In collaboration with patients and community partners, the goal of this program of research is to further understand the experiences of patients in the MAID program as well as their families and health-care providers," she said, "and then to examine the community resources available to these patients within Vancouver Island."
That information can then be used to design and evaluate a community-based peer navigation program in which volunteers can be trained to offer supports.
The professor said the project grew out of several studies she and her team conducted over the past few years which indicated patients and their families often have unmet care needs and challenges that are linked to social determinants of health such as social isolation, housing insecurity and limited access to health and social services.
The project has three different components. The first is to understand the emotional needs of families whose loved ones requested medical assistance in dying and whose natural death is not foreseeable, which would involve extensive interviews. The second is to explore the care needs and resources for those facing health and social inequities and requesting medical assistance in dying. The first two are currently underway.
The third, and final, is to create and evaluate a community-based program that offers ongoing support for people seeking MAID and facing health and social inequities on Vancouver Island.
The supports offered through the program would include health and social needs.
"The idea is to recognize that end-of-life care is not only a medical issue, but also a social one and by building networks of supports within communities we aim to improve quality of life, reduce the health and social challenges that patients in the MAID program may be experiencing as well as support families," Variath said. "This will augment supports they may already be receiving by health-care providers."
Often, she said, the medical team of the patients who are requesting MAID take it upon themselves to provide that support outside the scope of their job.
"If they get a request from a patient that needs navigational supports, often this clinician might take that on themselves or the co-ordination team that takes on the patient might help with some of that but ... it's often inadequate [and] also time-consuming. With this community-based approach, our goal is sort of to bridge that gap."
Inequities might take the form of simply not having access to a family doctor or direction of social services, but could also take the form of resources to make a will or arranging funeral services.
"If they are linked to a palliative care team there is a ... team who could support patients and their families in preparing for their death, for example, but if they're not linked to palliative care then they don't have that access to preparing."
Variath said she will be building off similar tools which currently exist, such as the Nav-CARE program, which has specially trained volunteer navigators supporting individuals with declining health to live well at home for as long as possible by helping access resources and services in their community, while providing companionship and emotional support.
"Of course the needs of patients in the MAID program might be unique, including family members needs..." she said. "So we're going to use the tool kits that are available and create specific education material to train peer navigators and then to establish a program where these peer navigators will be informed of patients who may benefit from this peer support, and train them to offer one-on-one supports to these patients."
For Variath personally, she said her interest in end-of-life care came from her experiences as a nurse at the bedside in critical and acute care settings where she witnessed first-hand how health care often prioritizes prolonging life.
"While that is important, what sometimes gets neglected or not really focused on is what quality of life means to our patients and what end-of-life care could look like or empowering them to make choices at end-of-life."