‘Out of the Shadows’

Genevieve Thompson.

While COVID-related public health restrictions have put a pause on much of her research, Genevieve Thompson [BN/97, MN/03, PhD/07] says the pandemic is having a positive effect on the future of her work.

Thompson, associate professor in the College of Nursing, has seen increased interest in her research on people visiting, working, living and dying in long-term care facilities.

“There’s been a real uptick in global interest in long-term care issues,” she says.

Thompson, a faculty member since 2010, studies how to deliver high-quality, respectful care to residents of long-term care homes. That includes end-of-life care.

The pandemic, she says, has brought the subject of dying “out of the shadows” and led many people to think about care-home residents and other patients dying alone.

She recently discussed this topic at online events held by the Canadian Palliative Care Nursing Association, Palliative Manitoba and UM’s Centre on Aging.

“Much of the discourse on dying alone paints it as something that should be avoided at all costs,” she says. “But dying alone doesn’t necessarily mean one feels alone or has limited social networks.”

Thompson says there are several reasons one might prefer to die alone, including religious beliefs or a desire to protect family from the burden of witnessing one’s death.

She adds that there are ways for a dying person to not feel lonely, even with public health restrictions in place, such as audio and video recordings from loved ones or hearing some of their favourite music.

“Questions about whether one wishes to be accompanied at death need to become part of our standard advance care planning,” she says.

The Winnipeg-born Thompson became interested in long-term care after working in several bedside nursing positions that eventually led her to a clinical nurse specialist role in the Winnipeg Regional Health Authority’s palliative care program, a position she held while pursuing her doctorate.

Around that time, her mother was diagnosed with Alzheimer’s disease. While her mother was cared for at home, Thompson began to wonder about the effect the illness had on those in care homes.

“There is excellent care happening in a lot of these places,” she says. “How can we learn from them and spread this to every facility, so every resident is living the best possible way through to the end of their life?”

Thompson is looking forward to restarting a study on how to tolerate a resident’s right to risk. This relates to the ethical question of whether imposed restrictions, such as on an individual’s diet or their freedom to move around, can impede their human rights.

She points to Scotland, which has implemented a human rights framework in its care of older adults, particularly those living with dementia. She’d like to bring this philosophy to Manitoba.

“Although we call it ‘home,’ long-term care is still an institution with policies and regulations that can limit an adult in making decisions,” she says. “I’d like to explore how we can support these residents to make decisions that may be risky, and educate their families about those risks.”