New toolkit guides health-care professionals to assess dementia in a new way
University of Alberta-led research is revolutionizing the way health professionals assess the decision-making capacity of seniors in Edmonton and across the province.
The model led to a 60 percent drop in referrals to geriatricians and an 80 percent drop in the number of capacity interviews required when it was first piloted.
"We recognized that we actually lacked a clinical process," said Jasneet Parmar, associate professor in the Department of Family Medicine and medical director of the Covenant Health Network of Excellence in Seniors' Health and Wellness.
"We had legislative acts and policies, but there was no clarity on how to uncover the evidence to declare whether someone is capable or not."
The team established guiding principles to be minimally intrusive and follow the patient's expressed wishes as much as possible, with the goal of keeping patients safe in their homes.
"We developed an actual pathway to follow," said Lesley Charles, associate professor and director of the Care of the Elderly program at the U of A. "We wanted to cut down on wasted time and testing for both the patient and the health-care professionals."
The model has been endorsed by Covenant Health and Alberta Health Services and adopted in hospitals, medical clinics, home care, supportive living and nursing homes in Edmonton, Calgary and other Alberta centERs.
A more ethical approach
Decision-making capacity assessments are done by a health-care team when an adult makes choices that put themselves or others at risk—for example, when a dementia patient begins to wander.
Parmar launched the project back in 2005 when she realized medical professionals were given little guidance on how to make this life-changing determination, which can lead to the invocation of a personal directive or the appointment of a guardian or trustee to make decisions for the patient.
"I had a social worker literally stand nose to nose and toes to toes with me and say, "Dr. Parmar, do you know what you are doing?" When you declare somebody incapable, you are actually changing their legal status in our society."
"I looked at him sort of dumbfounded," she said. "I didn't realize I was doing that."
Parmar then brought together a multidisciplinary team—social workers, psychologists, family physicians, geriatricians, neurologists, psychiatrists, occupational therapists, rehabilitation specialists, ethicists, pharmacists, dietitians, speech language pathologists—anyone with a role in seniors' care.
She realized that patients were often being declared incapable when they had a temporary cognitive impairment due to surgery or medication, or without any examination by a doctor. Some patients were being asked to sign their personal directives one day and being declared incapable the next.
"All of this was considered highly unethical," she said.
Under the new model, patients have the right to knowingly take a risk by choice, even if that is hard for the health-care team and the family to accept.
"With the capacity assessment, it's not their decision that you are judging, but the quality of their decision-making and whether they understand the consequences of their decision," said Parmar.
For example, a patient at risk of falling may refuse to leave their home or wear a medical alert system.
"If they can quite clearly say they are 95 and they've lived in their home for 50 years and that's where they want to stay—even if they may end up lying on the floor or suffering illness because of it—then they know their options and the consequences of those options, and they can make that decision to stay home at risk," explained Charles.
The process now starts with a pre-assessment, which can help to avoid, or at least delay, the need for a declaration of incapacity.
First, the medical team must consider whether there is a significant trigger that warrants assessment—an action or inaction that puts the patient at risk and is felt to be due to impaired decision-making, such as wandering or failing to pay bills.
The team ensures the patient is medically and psychiatrically stable before performing cognitive and functional tests.
Next, the health-care team, the patient and their family come together to brainstorm ways to keep the patient safe in their own home.
That could mean giving a person who is at risk of falling a portable medical alert device to wear around their neck. Someone who keeps forgetting to turn off their stove could have an automatic timer installed or rely on a microwave or Meals on Wheels instead.
"Usually these are frail, elderly people with cognitive impairments, and their families are worried about them," said Charles.
"If you can solve that person's problem, mitigate the risks and keep them home, I would say that it's a fairer process," she added. "Nobody wants to take their rights away unless it's an absolute last resort and it's felt that it's needed to protect their safety."
Training with empathy
The capacity assessment is performed by the clinical team the patient knows best, rather than by expert consultants who are parachuted in, Parmar noted.
It requires extensive training of staff such as social workers, occupational therapists, nurses and physicians. Parmar estimates more than 1,000 Albertan and Canadian health-care professionals have been through the decision-making capacity assessment courses, and they have received requests to share the model from as far afield as Australia and Scotland.
A scenario in the training presentation begins, "Think of all the decisions you make in a day—where to live, who your friends are, what you're going to wear, what to do if you get sick…
"Now imagine your right to make all of those decisions was taken away."
Parmar believes one of the reasons the model is so readily accepted is that it fits with most health-care professionals' basic values of caring and respect for patients.
"It's so rewarding to deliver education to staff who believe in the guiding principles of this process, who want to preserve autonomy and want to do problem-solving," she said.
"When you see the relief in their faces and you reduce their anxiety over how to address this complicated topic, it's very rewarding. You make things simpler and easier for everyone."
"I always say to staff, remember, you want to do the assessment the way you want it done to you," said Parmar. "We are all going to need it one day, and you want somebody to apply this process with integrity."