Carolyn is in her late 80s, frail and often confused. She sleeps most of the time, hasn't eaten much of anything in a few days. It's been two weeks since she's left her bed in the long-term care (LTC) home where she came to live six months ago. She's having difficulty breathing; she coughs when she talks to her son, who sits by her bed, holding her hand. Her words don't make much sense, but she has occasional moments of clarity, times when she recognizes family members and the regular personal support workers (PSWs) who provide the bulk of her care each day and night.
During one such moment of clarity, in the wee hours of the morning, she opens her eyes and looks directly at her PSW. "Am I dying?" Carolyn asks.
A panicked look passes across the face of the younger woman who is caring for her. What's the right answer? What can she possibly say in this kind of situation? She's silent for a moment, her mouth open, before making a 'timeout' signal with her hands. "I'm not feeling comfortable here," she announces to the room at large. "I could use some feedback."
And the scene stops.
In fact, Carolyn is a high-fidelity laboratory mannequin. And this isn't actually a room in a LTC facility, but the simulation lab at Lakehead University's School of Nursing, where a group of PSWs have congregated for a skills-training session on communication in palliative and end-of-life care. The actor playing the woman's son listens in as the PSW brainstorms with her colleagues and palliative care experts in the room to figure out possible responses to the dying woman's question and how to ease the son's distress.
"We used to try to brush off those questions," says Jackie MacDonald, a PSW working in a long-term care home, "because we didn't know what to say. It was very uncomfortable."
Mary Lou Kelley (l) and a volunteer at the launch of the Quality Palliative Care in Long-Term Care Alliance project in Thunder Bay
This initiative is part of a larger, five-year project, called Improving Quality of Life for People Dying in Long-Term Care Homes. Funded by the Social Sciences and Humanities Research Council of Canada (SSHRC), it's spearheaded by Lakehead Social Work Professor Mary Lou Kelley (BSW '74), who has, quite literally, made aging and dying — or, more precisely, improving the care of people who are aging and dying — her life's work.
Kelley, 61, began her career as a social worker at Thunder Bay's Port Arthur General Hospital in the 1970s. In those days, she recalls, residents of Homes for the Aged were often people in their mid-60s. "They drove their cars to the home. They were relatively healthy and independent."
Today, she notes, the face of long-term care has changed dramatically: the typical LTC resident is well over the age of 80, with multiple chronic and progressive health conditions. Many have Alzheimer's disease or a related dementia. "It's a very, very frail population that needs a lot of care including palliative care."
In her work at Lakehead, Kelley has made it her mission to understand — and then improve — the care of older people. She's particularly interested in how populations disadvantaged by lack of resources, poor health or limited access to services, for example, those who live in rural, remote areas or First Nations communities, can advocate for themselves and improve the aging and dying experience for their loved ones and community members. "It all boils down to the fact that I'm a social worker who does research," she says, "and I use my research to create social change for what I hope is social good."
The palliative care in long-term care project is just one example of the "community-based action research" that Kelley favours. She's leading a similar five-year project, funded by the Canadian Institutes of Health Research (CIHR), on Improving End-of-Life Care in First Nations Communities, to help First Nations people develop their local capacity to care for dying community members.
"It all boils down to the fact that I'm a social worker who does research," she says, " and I use my research to create social change for what I hope is social good."
"Mary Lou includes as an equal partner, not only her research team, but also the communities she works with," says Sharon Baxter, executive director of the Canadian Hospice Palliative Care Association (CHPCA). "It's not research for the sake of research; it's research for the sake of people."
That people-centred approach may be one reason why so many — from PSWs on the front lines, to Lakehead students in disciplines as diverse as gerontology, social work, and education, to researchers around the world — are eager to work with Kelley. She's built up an impressive network of collaborators that includes community and government partners across Canada and internationally. Kelley's projects have attracted millions of dollars in funding during her 32-year tenure at Lakehead. In 2012, she was awarded a Lakehead University Research Chair for her palliative care research.
There is strong evidence that Kelley's work has made a difference. In 2011, the CHPCA selected Kelley as the recipient of its Award of Excellence in Hospice Palliative Care to recognize her contribution to palliative care education and research. "It's a prestigious award because you must be nominated and selected by your peers," says Baxter. "And Mary Lou won hands-down in a field that tends to be dominated by doctors and nurses and volunteers. It just shows that she's not only respected by her own peers, but across disciplines, across the country."
Last October, Kelley travelled to Montreal for the 19th International Congress on Palliative Care, where she picked up the Queen's Diamond Jubilee Award and became one of 32 Canadians recognized by the CHPCA and the Governor General of Canada for their outstanding commitment to improving palliative care. Locally, in August 2012, the City of Thunder Bay presented her with its Citizens of Exceptional Achievement Award for her work at Lakehead University's Centre for Education and Research on Aging and Health (CERAH), which she founded in 1992.
Kelley's appreciation of older people began early in life. Growing up in Thunder Bay as the eldest of six siblings, Kelley enjoyed a close relationship with her maternal grandparents. "When my mother had had enough of me, she would put me on the train and send me to my grandma in Kenora for the summer," says Kelley, tongue-in-cheek. "For me, and for many of my students, one of the things that motivated us to do research with older people is that we've had extremely positive relationships with the older people in our lives." Her father, a Thunder Bay family doctor, was also a strong role model for a lifetime of dedicated and compassionate service.
Perhaps it's not surprising, then, that as a teacher Kelley is known for her commitment to fostering positive intergenerational relationships. "She's a marvelous mentor," says Baxter. "She's taken some younger researchers and brought them up in the field, and let them shine their own light."
One such student is Kathy Kortes-Miller, a PhD candidate in Lakehead's Faculty of Education, and one of the palliative care experts working with the PSWs in the simulation lab.
Kortes-Miller first met Kelley as a master's student in Lakehead's School of Social Work. Later, she became Kelley's graduate assistant, helping to design and set up a course in psychosocial palliative care. This course laid the groundwork for an interdisciplinary Palliative Care Certificate program at Lakehead, where Kortes-Miller now teaches.
Kelley, says Kortes-Miller, is well-known for this kind of advocacy on behalf of her students. She's also famous for a different trait: "Mary Lou is notoriously late," she says with a laugh. "But a huge part of the reason she's late is that if you need to talk to her, if you ask her a question, she will stop and give you her full attention and make you feel like your question is the most important thing in the whole world to her. She finds people who are passionate about something and finds ways to help them pursue their passion."
Which leads back to the personal support workers participating in that simulation lab. These front-line workers are extraordinarily passionate about their work: "There's nothing else we would rather be doing. I can't tell you how many of my coworkers come in on their days off just to sit with a resident who is dying," says McDonald, who works as a liaison between her colleagues and Kelley's research team. "And when they die it's like losing a family member. We needed something to help us deal with the transition and the loss." Working together, the PSWs and Kelley's team researched the needs and gaps in the PSWs working environment, and developed new initiatives and resources to address those needs. As a result, says MacDonald, residents are better served, PSWs are more competent and confident, and workplace hierarchies have diminished.
For Kelley, that's the greatest sign of success: when her work helps students, citizens, institutions, and communities develop and create their own capacity for positive change. "My research is all about changing processes, changing the way things happen. And if I do my job really well, people won't think I did anything at all."