Canada’s health care system needs to care more about caregivers

We are loathe to quibble with an article so agreeably titled as “We should care more about caregivers,”1 but quibble we must.

Dr. Stall rightly notes that most care for older Canadians is provided by family caregivers — who would agree that their work is unpaid, but would summarily reject the label “informal” — and that caregiving is becoming increasingly complex and stressful. These are troubling trends given that recent data indicate only about 1 in 5 caregivers feel they are coping very well.2

It is undoubtedly true that additional financial support would be welcomed by most family caregivers and that enhanced workplace accommodations for caregivers are clearly needed. What we feel is missing from Dr. Stall’s call for more caring is that it is actually the health care system itself that most needs to change, and that the “we” who can and should do more includes us — those who work in the system.

Data show that many family caregivers do not self-identify as caregivers, but that, nonetheless, they feel they’re fully or partially responsible for organizing and sustaining the patient’s circle of care,2 which is untenable given the maze we persist in calling a system. Our health care system is so disconnected and fragmented that even health care professionals report great difficulty accessing resources, sharing information and navigating the silos. It is no wonder that caregivers turn first to the Internet and social media for guidance and support; our system has yet to embrace and integrate the role of the family caregiver fully, and the concepts of caring and compassion seem to have been subsumed by efficiency and patient flow.

There is a pressing need for health care to be redesigned to make it less burdensome for those it exists to serve, namely patients and caregivers. Our hospitals need to treat family caregivers as partners in care, not as visitors. And physicians, in collaboration with inter-professional teams, need to identify and engage family caregivers better to foster greater caregiver confidence and capacity. With support from The Change Foundation, a series of multi-year, province-wide projects is underway to design, test and evaluate innovative models of caregiver-friendly care.3

So while there can be no doubt that it is time Canada cared more about its caregivers, let us first acknowledge that it is long past time that Canada’s health care system cared more about caregivers.