Studies on compassion show gap between care and patient experience

Compassion is a term we all use, but we don’t really understand, according to Shane Sinclair, assistant professor and researcher at the Faculty of Nursing. His two recently published foundational studies shine light on the alarming gap between this increasingly recognized pillar of quality care and patients’ actual experiences.

Sinclair and his team looked at literature on compassion over the last 25 years, noting that 73 per cent of all articles have been published in the last four years. They found compassion was frequently conflated with sympathy and empathy and that less than one-third of studies included patients, with no studies asking for patients’ understandings of compassion.

“After we conducted this first comprehensive review of compassion in the health-care literature, we discovered that while compassion is a term that is liberally employed, we actually know very little about what it is, how it is experienced and its impact according to patients themselves,” says Sinclair, who holds a research professorship in cancer care. 

Research shows compassion erodes over course of medical education

Published in January in BioMed Central Palliative Care, the research also uncovered that health-care education can be detrimental to the individual’s baseline compassion. 

“While health-care providers want to provide compassionate care and feel confident they are, they often miss opportunities to do so, with their compassion eroding over the course of their medical education,” says Sinclair.

In the United Kingdom in particular, a number of pivotal health inquiries in the last three years have identified a lack of compassion as a significant contributor to adverse outcomes, including death.

First evidence-based model and definition of compassion from patients

Sinclair then conducted a follow-up qualitative study, funded by CIHR, with 53 cancer patients at end-of-life which generated the first evidenced-based model and definition of compassion from patients themselves. They distinguished between compassion and similar concepts of sympathy and empathy, with compassion being the most preferred.

“Patients at the end-of-life bring an important perspective to our look at compassion for at least two reasons,” explains Sinclair. "If ever there was a time when compassion matters most, it is at the end of life. And, by virtue of their life-long experience, these people have the most health-care interactions and can speak to the importance of compassion across the lifespan.”

Future training links academics studying topic and individuals practising compassion

In the future, Sinclair plans to develop compassion training that is patient-informed and to seek opportunities for dialogue between academics studying compassion and individuals who are practising compassion in society. The first of these is a symposium in May hosted by the Faculty of Nursing, featuring Margaret Atwood as a keynote speaker. “Compassion Under Contemporary Conditions” includes breakout panels focused on compassion at the bedside, compassion in the classroom and compassion in the community. 

“The end result of the panel will be food for thought,” says Sinclair. “We are hoping participants will be compelled to take action; to take what they learn and make small or large changes in their lives and potentially, in their community.”

Sinclair’s second study “Compassion in Health Care: An Empirical Model,” will be published in the February edition of the Journal of Pain and Symptom Management.