Invisible patients: Caregivers need support too in Canada's health-care system

Nervous, afraid and distressed — this is how many Canadians say they feel about the future health care, according to a recent survey.

Where does this negative perception come from? Our research suggests that much of it may arise from the experiences many Canadians have when in the role of caregiving for loved ones.

In a national 2019 survey conducted by Ipsos on behalf of the Canadian Medical Association, when participants were asked to describe their views about the future of health care in Canada, negative emotions (62 per cent) like nervousness and distress far outweighed positive (38 per cent).

Our ongoing research on medical errors and mistreatment provides some insight into why — and how the stress of acting as a caregiver may inspire those negative feelings.

The number of caregivers is staggering in Canada. An estimated 46 per cent of the population aged 15 and over, or 13 million Canadians, provide care to a family member or friend with a long-term health condition, disability or aging needs.

The complex experiences of family and friends of patients in our health-care system is an often overlooked, but integral part of assessing our medical system.

Caregivers become patients

These informal caregivers often experience a double bind in their encounters with clinicians and medical staff. On the one hand, they are expected be an expert and/or watchdog of their loved one's care. On the other hand, they are often admonished or isolated if their concerns are inconvenient or difficult for staff to engage with. 

This complex role leads many caregivers to experience a range of negative emotions in line with the CMA survey results. In addition to expressing nervousness, fear and distress, many of our informal caregiver participants discussed experiencing debilitating feelings of blame, guilt, and, in some cases, post-traumatic stress disorder (PTSD).

There is also the bleak reality of financial stress given that caregiving is unpaid labour. An estimated one in 10 caregivers provide care for 30 or more hours a week, which leaves little time for employment.

Caregivers often become invisible patients as a result.

For example, when discussing an adverse event experienced by her son during his treatment in a Canadian hospital, one of our research participants stated, "I think, because it was my son … there's a level of blame in the other events, like I let it happen, or I should've stopped them."

"That was a huge contributor to my PTSD," she explained further, "and that was huge, that was the big thing. Because it was my fault, and I became hyper-vigilant to keep these mistakes from happening, even when it was the medical system." 

More and more organizations involved in health-care research and training have moved to a definition of 'patient' that now includes significant others involved in their loved one's care.

Another interview participant, both a former nurse and an informal caregiver for her family, described the fear and frustration she felt when helping her mother in the hospital.

"So I see my mother and how … our older generation is accessing the medical system, and how it's not always so user-friendly for them. And again, if you weren't the individual there helping her, it could've been so much worse."

When asked how her experiences impacted her thinking about the health-care system, especially as a retired nurse, she further explained, "Well, it has impacted me. Because it's like you're on the other side of the fence now.

"You're not the … professional caregiver. You're the caregiver as the patient, or advocate and such like that. So I guess it's kind of made me not distrustful, but a much more watchful, keener eye. Because I do believe that our health-care system is faltering." 

Redefining 'patient'

Clearly, we have much to learn from caregiver experiences, and there is some good news on this front.

More and more organizations involved in health-care research and training have moved to a definition of "patient" that now includes significant others involved in their loved one's care.

The Canadian Institutes of Health Research now defines "patient" as "an overarching term inclusive of individuals with personal experience of a health issue and informal caregivers, including family and friends."

This new definition is important, in light of last week's Canadian Patient Safety Week. The central theme of the week this year was "conquering silence." Part of conquering silence in our medical system, we argue, must involve everyone — medical professionals, social workers, politicians and health administrators — supporting caregivers and transforming them from being invisible patients.

As our population continues to age, it is in all of our interest to advocate for a health-care system that has both the resources and capacities to truly care about our loved ones, and those of us acting as caregivers when we experience some of our most vulnerable and challenging events.