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To the Editor:
We are loathe to quibble with an article so agreeably titled as “We Should Care More About Caregivers” (1), but quibble we must. Our concern stems more from what is not said than from what is.
Dr. Stall rightly notes that the vast majority of care for older Canadians is provided by family caregivers – who would swiftly 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 of course true that additional financial support would undoubtedly 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 healthcare 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 in the role of caregiver, but that they nonetheless feel they’re fully or partially responsible for organizing and sustaining the patient’s circle of care (2), which is simply untenable given the labyrinth-like maze we persist in calling a system. Our healthcare ‘system’ is so disconnected and fragmented that even healthcare professionals who work in the system everyday report great difficulty accessing resources, sharing information, and navigating the silos. It’s no wonder that caregivers turn first to the internet and social media for guidance and support: our system has yet to embrace and fully integrate the role of the family caregiver, and the concepts of ‘caring’ and ‘compassion’ seem to have been subsumed by ‘efficiency’ and ‘patient flow.’
There is a pressing need for healthcare 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 interprofessional teams, need to better identify and engage family caregivers 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 it’s time Canada cared more about its caregivers, let us first acknowledge that it’s long-past time that Canada’s healthcare system cared more about caregivers.
References:
(1.) Stall N. We should care more about caregivers. CMAJ 2019 March 4;191:E245-6.
(2.) The Change Foundation. Spotlight on Ontario’s caregivers. Available: https://www.changefoundation.ca/spotlight-on-caregivers/ (accessed 6 March 2019).
(3.) The Change Foundation. Announcing four partnerships ready to start Changing CARE. Available: https://www.changefoundation.ca/announcing-four-partnerships-ready-start... (accessed 6 March 2019).