Why we need to include the voices of persons living with frailty in healthcare decision-making

By Katherine McGilton and John Muscedere

Today, over one million Canadians are medically frail – approximately 25 per cent of those over age 65 and 50 per cent past age 85. The aging of Canadian society and the growing number of older adults living with frailty poses unprecedented societal and medical challenges which will only increase in the coming years.

In 10 years, over two million Canadians may be living with frailty, which is defined as a state of increased vulnerability, with reduced physical reserve and loss of function across multiple body systems. Frailty reduces a person’s ability to cope with normal or minor stresses, which can cause rapid and dramatic changes in health.

Frailty isn’t simply getting older. The risk of becoming frail increases with age, but the two are not the same. Those living with frailty are at higher risk for negative health outcomes and death than we would expect based on their age alone.

To meet the challenges of increasing numbers of Canadians living with frailty, we’ll need to begin to reorganize how we provide both social supports and restructure the health care system to meet their needs – a tall order.

Key to the successful transformation of the Canadian health and social support landscape is evidence informed by persons living with frailty, their families and caregivers. Call it patient-centred care or a value agenda, we need to include the lived experiences of patients and families in how we do research, plan and care for them.

So what do they say is a priority when we take the time to ask them?

The Canadian Frailty Network embarked on a study to establish priority areas for researchers from the perspective of Canadians living with frailty, their caregivers and related stakeholders.  This study asked older Canadians what they believe are the important questions related to the care, support and treatment they think would help maintain physical, mental and social well-being for older adults.

What we found was that their top priority concerned the organization of health systems. Older Canadians told us they want integrated and better coordinated care that would meet both their health and social care needs and those of their families and caregivers.

Not surprisingly, given Canadian geography and the fact that so many older Canadians live some distance away from family, the second priority was that care, services and treatments should be tailored to meet the needs of older Canadians who are isolated and/or without family and caregiver support or advocates.  

Their third ranked priority involved having more community and home-based services, programs and resources to prevent, manage or slow the progression of frailty or minimize its impact. 

The remaining priorities cover a wide range including providing alternative models of housing, such a multigenerational or shared living options; resources to reduce unnecessary hospitalizations and emergency department visits; and better and more-informed attitudes and skills from those providing care and services to those with frailty. 

Older adults must have a voice in policy and program priority setting if we are to implement systems that are responsive to their needs.  The need for patient involvement in setting both frailty research and policy priorities is particularly urgent since older adults have historically been underrepresented in decision-making in health and social care systems.

Priority setting with the voices of older adults can only make the health and social services systems better – for everyone.  As our society ages, and as we begin to manage the challenges that come with an aging society, let’s make sure to listen to the voices of those living with frailty.

Katherine McGilton is a Senior Scientist at the Toronto Rehabilitation Institute-UHN, a Professor in the Lawrence S Bloomberg, Faculty of Nursing at the University of Toronto and a Network Investigator with Canadian Frailty Network.

 John Muscedere is the Scientific Director and CEO of the Canadian Frailty Network (CFN).  He’s also an Expert Advisor with EvidenceNetwork.ca, Professor of Critical Care Medicine at Queen’s University and an intensivist at Kingston General Hospital.