We all hope to age with grace and make decisions for ourselves well into our golden years. But for millions of Canadians living with a neurological condition like epilepsy or Parkinson’s disease or a mental health condition like schizophrenia or dementia that hope is often taken away because of the fear and confusion caused by the stigma associated with their inability to make decisions for themselves.
As a result, families, caregivers, advisors and physicians are left to make tough choices from which treatments to pursue to having difficult conversations about financial issues or housing.
Each person may have a different opinion about when the appropriate time is to step in and protect an incapable person from harm or allow that person to make decisions independently or with support.
But what say does the person living with the neurological or mental health condition have in these decisions?
There is little to no guidance around when a formal assessment should be requested or how to reduce subjectivity in the actual assessment. This means there is a higher risk that people could disagree about when the appropriate time is. Many people avoid the conversation until there is a major event or loss of cognitive functioning.
It’s a problem Nathan Spaling has witnessed as a lawyer working in estate and incapacity planning. In 2021, Spaling founded Capacity Clinic, Canada’s first medical-legal assessment company focused on creating standardization and innovation using evidence developed by medical-legal assessment professionals.
The gap between diagnosis and decision
There are many paths that lead someone to the point where they question if they are no longer able to make decisions for themselves. It could be a diagnosis such as dementia, an unexpected medical event like a brain injury from a car accident, or other social circumstances including trauma and stress.
“What most people do not know is that when a person is incapable of making decisions for themselves, they are not aware of this fact themselves. To put it differently, people have to rely on others to take the appropriate intervention and protect them from harm because an incapable person may not even realize they are being taken advantage of,” Spaling said.
These differences of opinion between lawyers, caregivers, family, and financial planners can lead to irreversible losses to a person’s health, housing, finances, or unauthorized access to personal information.
Rather than relying on the gut feeling of a family member or a single professional, Capacity Clinic brings together a team of specialists — medical, legal, and technology based professionals — to make that call with confidence and defensibly using screening and assessment data collected over multiple years of interdisciplinary collaboration and innovation.
From fixing the system to finding the customer
As a lawyer, Spaling understood the problem he was trying to solve. But developing a solution and selling a solution are entirely different skillsets.
“Every single day I walked out of the house and I tried to help fix the entire system. But importantly, I realized that not everybody wants the system to be fixed. It was so fortuitous that I got into the AC:RevLab program because it really gave me the processes to be able to engage people and define who my customer truly is and how the problem is being addressed currently in order to articulate the value and implementation of the solution,” he said.
AC:RevLab is designed for founders looking to turn early wins into repeatable, scalable growth with practical and tactical support from mentors who have been there before. Spaling said the program helped him understand who his ideal client was by giving him the systems to turn data into insights and discovery.
Through the program, Spaling identified three ideal customer profiles: incapacity and estate planners who help people prepare for being incapable to make decisions, professional fiduciaries who act in the best interest of the incapable person, and Canadian businesses (financial, housing, or health organizations) who take instructions from a substitute decision maker.
Once he had a clear vision of these three ideal customer profiles, Spaling initially decided to focus on organizations needing evidence-based protocols to protect vulnerable clients as the highest priority customer for Capacity Clinic. These can be financial advisors, realtors, legal professionals, retirement homes, and private care providers.
“Our entire sales process has been redefined in the best possible way,” he said.
Part of redefining that sales process meant learning to meet customers where they are. Spaling, who grew up in Drayton, Ontario, understood early on that credentials alone don’t build trust—especially when you’re asking someone to make decisions about their own vulnerability.
“I know people who are farmers and people who are accountants, and both of them are smart people. But their decision-making process can be very different. During this process, I can imagine how a handful of my friends would say, ‘If you’ve never met me before, I don’t care what your fancy degree says, what do you know about the way I make decisions?’,” he said.
That lesson helps to keep in perspective the unique decision-making process that everyone has and the importance of an approach being sensitive to inclusion and cultural factors.
Rather than leading with expertise, Spaling learned to lead with the right questions that make the problem feel personal and urgent before a solution is ever mentioned. The result has been tangible. Sales have increased, evaluators are being onboarded coast to coast, and the infrastructure to scale nationally is now in place.
“We can continue to be leaders in this space because of our willingness to collaborate, innovate and readiness to learn. I could not be more proud of the people we work with and the difference we are making,” he said.
Putting the spotlight on capacity and care
As Capacity Clinic continues to scale across Canada with its evidence based model being used in the incapacity screening tool (called DecisionTracker) and their legal based assessments, like signing a will or contract, making a gift, or instructing counsel, Spaling is also working to grow the conversation around incapacity and decision making by launching the Canadian Centre for Decision Making Capacity and the coalition to establish a Pan-Canadian Assessment Framework to reduce the subjectivity and variability of outcomes of decision-making capacity assessments.
The centre is looking to bring together assessment professionals, financial institutions, government organizations, and other stakeholders to build culturally sensitive and accessible decision-making pathways so that when a diagnosis or another risk factor comes, there is already a clear and trusted path to follow.
For Spaling, the goal is simple even if the work is not. Whether through Capacity Clinic’s assessments or the Centre’s broader advocacy, he wants every Canadian to have the tools to protect their autonomy before they ever need to use them.
“Incapacity Literacy is not a fancy term to be used in research only, it is the key to protecting a person’s right to make their decisions independently, with support while also empowering the trusted network to know the appropriate time to help” he said. “Everyone’s opinions matter, let’s start being clear about how to protect them.”
