Should I stay or should I go? Research helps guide crucial decisions about home versus institutional care

When Dr. France Légaré learned that the Canadian Frailty Network (CFN) was offering grants to explore shared decision-making in care for older adults living with frailty, she was absolutely convinced she had to apply. So much so, that even though she had a broken hand, she removed the cast and carefully typed her letter of intent on the last day of the competition. Her painstaking efforts paid off. She and her team received the pivotal funding that launched them in a new research direction to explore the difficult decisions older adults and their families face about where to locate care–at home with home care support, or in a long-term care facility.

“The CFN funding allowed us to embark on a new direction to help seniors and families navigate these difficult decisions, with better support from home care providers,” says Dr. Légaré, a primary care physician and senior health policy researcher at Laval University in Quebec City. “With it, we were able to conduct a clinical trial comparing our shared decision-making process with the usual care, by training home care teams in this process. The results were very clear. Those people who were supported by home care teams that had been trained in the shared decision-making process felt engaged and that they had been given the opportunity to play the role they had wanted to play.”

The decision to stay at home or move into a care facility is a difficult one for seniors and their families. In the past, people were left to make these literal life-and-death decisions on their own–or perhaps family members or even care providers would make the decision for the person.

And yet, no one wants to feel powerless in making a decision that will have such a major impact on their own or their loved one’s health, safety and quality of life. But what is the evidence about which options lead to which outcomes? Is it safe to stay home with home care support, if I have complex health issues or a history of falls? What will life be like in a nursing home or assisted living facility? Am I ready for that?

Initially at the request of Centre de Santé et Services Sociaux de la Vieille-Capitale, a large

primary health care organization in Québec, Dr. Légaré and her team developed a comprehensive training program for home care providers, to teach them the skills and shared decision-making framework they would need to help seniors and their family members work through the pros and cons of each option. But that was just half the equation. They also developed a decision making aid to help seniors and families understand what matters most to them and the implications of their decisions.

“As we worked with people, we found an overwhelming desire for support in making these very challenging decisions. We were tapping into an unmet need, a real policy issue,” Dr. Légaré recalls.

The CFN-funded clinical trial, conducted in 2015, clearly showed the effectiveness of combining the provider training program and client decision aid. This was the tipping point for Dr. Légaré and her team, which includes several CFN-funded graduate students. One of them, Rhéda Adekpedjou, a medical and doctoral student in epidemiology, recently published an evaluation of the training program for providers in the journal, Gerontologist. This showed that training home care teams in shared decision-making increased caregiver involvement in health-related housing decisions for cognitively impaired older adults.

With their tools and evidence in hand, Dr. Légaré and her team reached out to collaborators in other provinces to apply for a seven-year foundation grant from the Canadian Institutes of Health Research. The consortium–which includes teams in New Brunswick, Saskatchewan, Alberta and Ontario–is now looking more deeply into the dynamics of decision-making in the realm of home care.

“We have found a lot of underestimated challenges,” notes Dr. Légaré. “Home care has not been studied very deeply in Canada before. The funding from CFN really opened the door to this important work, which is examining the many facets of many decisions that seniors and their families must make. Decisions they have typically been left to make on their own.”

In fact, Quebec’s ombudsman receives many complaints a year from members of the public frustrated by lack of access to information about living options for seniors living with frailty and the lack of help in making the right decisions. When the ombudsman’s office launched a large public survey last year to explore these issues further, Dr. Légaré and her team moved promptly to share their findings.

“The ombudsman was very receptive to our evidence and asked for more information,” remarks Dr. Légaré. “We ended up doing two training sessions and one session to discuss our study results with members of the ombudsman’s office in the fall of 2019, so they would really understand the complexity of the decisions that seniors and families face and therefore fully appreciate the potential value of our solutions.”

With two new grants from CIHR, Dr. Légaré and her team are now working to further develop and refine the training program and decision aids, in preparation for a large-scale rollout.

“We are exploring what people’s needs are, in terms of what kinds of decisions they must make, and how these intersect with their values, life circumstances and preferences,” Dr. Légaré says. “For some people, it might be most important to be able to remain with their spouse, or to bring their pet with them. Others may be more concerned about how their mobility issues will affect their ability to cope at home, even with home care support. Others may simply not want to lose that ‘memory of the space’ they have in their home to go to an unfamiliar environment. It’s complex.”

So far, the team’s shared decision-making process has been rolled out across roughly half of the province of Quebec. As the process is refined and evidence of its effectiveness built, the rest of Quebec and other Canadian provinces will be able to adopt it as well.

“Deciding where to locate yourself–or your loved one–in the final years of life is a nuanced decision of great importance,” Dr. Légaré says. “We are determined to help people understand the benefits and risks of each option, to empower them to make the very best decision for them.”