Shane Sinclair finds himself moved with emotion when he thinks about how some cancer patients describe their diagnosis. “We all know patients who have been affected by a ‘cold’ health-care provider whose actions, or inactions, seemed to compound their suffering,” he says. “It complicates and exacerbates it to a completely different level. Almost like they had the pain of their diagnosis and then when they were down on their knees they got another shot to the kidney.”
Sinclair’s pain and compassion for his patients shows – it’s the reason he’s a natural at his program of research. “We talk about compassion, but do we really understand what it is?” he asks. Sinclair, an assistant professor in the Faculty of Nursing at the University of Calgary, has been working to define “compassion”: to date, the cancer patients he has interviewed comprehend it as largely unrelated to sympathy, sharing some qualities with empathy, but having additional and distinguishable features from it as well.
“Compassion seems to come from a place of character and virtue,” Sinclair says. “It requires action. It’s not just simply listening to a person.” For a health-care provider, this action can mean actively attending to a patient’s suffering. In addition to defining compassion, Sinclair is interested in delineating its elements and finding out if it can be measured, enhanced and developed in clinical care.
Sinclair chose to focus on compassion because he is primarily interested in addressing issues that matter most to patients. When he was working at the Tom Baker Cancer Centre and in palliative care, he remembers patients telling him “I love my nurse,” or “I have the best oncologist.” They told him they got the sense that the person genuinely cared for them, and Sinclair became compelled to find out whether a scientific lens could be put on compassion to make a long-term difference to patients.
Sinclair’s research embodies two studies: the first took place from April 2013 to September 2014 and examined patients’ perspectives on compassion. Sinclair and his team asked 53 advanced cancer patients interview questions like: What does compassion look like in clinical practice? How is it different than empathy and sympathy? What makes a health-care provider compassionate? Does this make a difference in your life?
The questions allowed them to develop a conceptual model serving as a foundation for Sinclair’s program of research on compassion.
In September 2015, the team started a second study that, over the next two years, will survey health-care providers on their perspectives and understanding of compassion, including if they agree with patients’ descriptions of compassion and what informs compassionate care. The study interviewed health-care providers in hospitals, home care offices and hospices, and will take place not only in urban settings but in rural ones as well.
It’s a tough topic that can be difficult to obtain funding for, but Sinclair’s team has nonetheless been fortunate to obtain peer-reviewed funding from the Canadian Institutes of Health Research. In the same realm, the other challenge is studying compassion rigorously and scientifically while realizing it’s not “stats and rats,” as he says. “It’s a human element, so you can’t ultimately master it, necessarily, but you can understand, codify, measure, enhance and improve patient care.”
Sinclair’s first study found that, when measuring compassion, patients believe going above and beyond sets some health-care providers apart – for example, a doctor calling them at home in the evening. Second, his work singled out compassion as the foremost characteristic of care – meaning it permeates and has an effect on all other areas of clinical care.
Sometimes, when prompted to give examples of compassion in care, patients gave examples of incidences when compassion was lacking. That dumbfounded Sinclair: “The fact that people would tell us – in many instances, months, years, or decades prior – and that they would carry that, residually, over all of those years, and raise it at a time when we didn’t actually ask them that question, I think is quite telling in terms of the importance of this topic.”
Now, Sinclair awaits the publication of two articles to come out of this study. Of the findings he has communicated to the Tom Baker Cancer Centre and as far as Copenhagen, researchers – and especially clinicians – have been very receptive. He also participates in an international group that is researching how to develop compassionate health-care systems. While his focus is on patient care, Sinclair’s work has proven popular far beyond the bedside.