How Cognitive Tests Strip Seniors of Their Rights

Muriel Shaw had always said the only way she’d leave home was “feet first.” For Shaw, a retired British Columbia Institute of Technology clerk in her 80s, home was a double-wide trailer in Coquitlam. Shaw was living an independent life and had endured a series of challenges, including the loss of her partner, Mel, in 1996 and breast cancer when she was in her 60s. At the end of 2010, Shaw didn’t seem herself: she was anxious and confused. Chris Jarvis, her youngest son, said she was “just acting strange.” The family took her to the hospital.

After Shaw was admitted, hospital staff decided to give her a capacity assessment: a common evaluation administered to people who seem disoriented. The goal is to determine whether a person has the ability to understand information and foresee the consequences of their actions or decisions. And, though doctors often give these assessments, the responses lead to a legal outcome rather than a medical diagnosis. If the assessor determines that a person is incapable of making some or all of their own decisions, a “certificate of incapability” can then be issued. These certificates have different names depending on the province, but they all have more or less the same result: from that moment on, some or all of a person’s autonomy may be taken away for good.

Being deemed incapable means that a person’s life decisions—what they spend their money on, what health care they receive, where they call home—may be delegated to another party. In some cases, that proxy is a family member; in others, it is the provincial public-guardian system, whose staff may meet with the person rarely, if ever. The system is designed to protect against elder abuse and errors in judgment; it is an attempt to safeguard some of society’s most vulnerable, but it risks doing so at the cost of their liberties.

After her capacity assessment, Shaw was deemed incapable. (Jarvis told me that she was showing symptoms consistent with early-stage dementia.) The people around her immediately began trying to work out who would make decisions on her behalf. She had three children, and they had different ideas about what would be best for her. Jarvis said that social workers and hospital staff determined there was no suitable place for Shaw to live among her family, and though she wanted to remain at home, her new care workers wouldn’t allow it.

Shaw was moved to a long-term care facility. She started writing in a journal there, in June 2011. She seemed to want to make the best of her situation, and on the first page, she put down a rosy title for her project: “New Beginning!” But her entries outlined a growing list of concerns: “My small room lets me see outside, food is available, etc., but I am still very sad and lonely,” she wrote. “Wish I could be home rather than in the hospital (or whatever this place is called!).” While Shaw was getting acclimatized to her new living situation, Jarvis and his siblings argued over how their mother’s money was being managed. To settle the matter, Jarvis asked B.C.’s Public Guardian and Trustee (PGT) to become involved. The B.C. PGT is a government-designated corporation that steps in when there isn’t a family member or close friend available to take responsibility for a person deemed incapable. “If we’d had family harmony and money, this would not have happened,” Jarvis said. “It wasn’t ideal, but what was the alternative?”

The need for reform

Shaw is not alone in spending her older years deemed incapable and living under the oversight of the PGT. In Alberta and B.C. respectively, public guardians reported 7,832 and 7,904 adult clients from 2017 to 2018. The public guardian in Ontario managed the finances of approximately 12,500 people in 2019, about half of whom were seniors. Billions of dollars—savings accounts, assets, pensions—are managed by public guardians across the country.

In recent years, auditors general and ombudspersons have raised concerns about the inner workings of the closely entwined capacity-assessment and public-guardian systems. Some seniors find that, once declared incapable, they are unable to challenge the decision. There has been case after case of mismanaged finances and contested spending. In Ontario, the auditor general found that over $1 million of assets managed by the PGT was lost between 2015 and 2018 because of staff mistakes. In one instance, a packet containing $645 worth of jewellery was found in a PGT office, and employees had no idea which client it belonged to. Errors like this are not confined to one province: reviewers in P.E.I., B.C., Alberta and New Brunswick have all stated that their public trustees may not be properly protecting or administering their clients’ finances.

It can seem like a great deal of attention is paid to other institutions that house vulnerable segments of the population, such as children in daycares. But there’s no future in aging; there is next to no potential that a senior might one day cure cancer or be the next prime minister. Reform in eldercare may be desperately needed, but it hasn’t been forthcoming.

Cognitive tests for seniors

Determining mental capacity can be a puzzle. To test for a fever, medical staff can take a person’s temperature; for diabetes, they can do a blood test. Capacity, on the other hand, has no standard unit of measurement. Sometimes the practice may seem more like an art than a science.

In Canada, depending on the province or territory, capacity assessments can be administered by a doctor or a nurse, a social worker or a psychologist, an occupational therapist or, in rare cases, a member of the clergy. Some assessors may use what’s known as a Mini-Mental Status Examination. In this evaluation, seniors are asked the month and the season. They are asked to spell “world” backward and forward and given a time limit. They are asked what province they’re in, to repeat the phrase “no ifs, ands or buts” and to fold a piece of paper in half and put it on their lap or the floor. Other assessors may use the Montreal Cognitive Assessment, in which the subject is asked to draw a clock face and to name as many words that begin with the letter f as they can in one minute. Other patients may be assessed on a geriatric-depression scale, where they are asked if they feel “pretty worthless” or if it’s “wonderful to be alive.”

Being on the receiving end of these questions can be rattling—and not answering to the assessor’s satisfaction can influence whether a person goes home at the end of the meeting. Experts have raised concerns about the efficacy of these tools and caution that assessors may be relying too heavily on them. Laura Tamblyn Watts, president and CEO of the seniors’ advocacy group CanAge, says that capacity should be thought of as more like a dial: “People are more and less capable of doing some things and not others.”

As she explains, many of us experience some level of uncertainty in our day-to-day lives; we all get confused and ask ourselves questions. Did I pay that bill already? Did I turn off the oven before I left home? But determining when exactly these sorts of questions become a sign that some greater function has been lost is far from straightforward. Even those with dementia don’t fully lose their faculties overnight.

Capacity often comes in fits and spurts and can be influenced by health and environment. Problems with sleep or blood sugar can temporarily affect a person’s state of mind. Seniors with dementia may experience a phenomenon known as sundowning, a decline in function that occurs later in the day.

And then there are the medications. According to the Canadian Foundation for Healthcare Improvement, in 2018, one in five people in long-term care were administered antipsychotic drugs despite not having any diagnosis of psychosis. These drugs can increase fatigue and confusion and are known in the industry as “chemical restraints.”

How a person performs on a capacity assessment can be influenced by whether they’ve recently experienced a traumatic event, whether they trust their assessor or whether they are hard of hearing. Some advocates for seniors argue that people may even be found incapable without being properly assessed by a doctor at all.

Photo: Shutterstock.com

“I want out of this place!”

Ruth Adria, a retired registered nurse in Edmonton, says that she believes this was the case when a woman she knew—I’ll call her Martha—was deemed incapable over 10 years ago. As Adria tells it, Martha was 85 and lived alone in her bungalow. She kept busy, filling her days with errands, tending to her backyard garden and regularly stocking her basement with jars of homemade preserves. Martha had grown up an orphan in Europe and knew how to look out for herself.

Then, one day, she hurt her foot and was admitted to her local hospital. While Martha was there, health care workers raised concerns about the cleanliness and safety of her living conditions. Martha never went home again. She lost control of her finances and was placed in a nursing home. According to documents that Adria saved, Martha’s bank account was billed $2,000 per month for her new room—a shared space in which only a curtain separated her from other residents. Martha’s house was emptied, her preserves thrown away.

Throughout the ordeal, Martha maintained that she was being unfairly “locked up,” according to a letter she wrote to her doctor that Adria kept. Martha knew what was happening: she complained that she wasn’t allowed to attend Mass, that her only exercise was “walking the corridor aimlessly,” and she argued she would be better off at home. “I want my freedom!” she wrote. “I want out of this place!” She never did get out.

With so many complicating factors that can influence capacity, and with a person’s rights on the line, the quality of assessments deserves more scrutiny. Adria now advocates for capacity assessments to be recorded and transcribed so families can have access to the basis of their family member’s certificate of incapability. As it stands, many written assessments are vague, with little information about how conclusions were reached.

In 2018, Ontario’s auditor general found that outside experts identified concerns in almost half of the assessors they evaluated. They cited a “lack of understanding of relevant legislation; asking subjects questions that lacked sufficient depth; not explaining why they found the subject incapable; and not meeting any of the requirements for completing an assessment.” The auditor concluded, “There is risk that the public guardian is assuming authority for managing the finances of people who are, in fact, capable of doing it themselves.”

The appeals process

A person’s options for challenging a certificate of incapability depend on what province they call home. The most-referenced example of a gold standard, Ontario’s Consent and Capacity Board, was created in 1996 but remains a rarity in Canada—a similar body exists only in the Yukon.

If a person objects to a capacity decision in Ontario, the board will convene within seven days. Application forms are available online, or a person can call a toll-free number for help. There is no cost for a hearing. Importantly, the board’s panel will go to the person challenging the decision.

One troubling Ontario case involved a 95-year-old widow who lived alone and was prone to falls. In 2014, a nurse she had never met before conducted a 40-minute interview and, as part of the questioning, asked what would happen to her if she stayed at home. The 95-year-old responded, “I guess I will just live till I die”—an accurate, if blunt, statement. The nurse deemed the woman incapable of deciding where she should live. The Consent and Capacity Board later found the opposite to be true. According to Ontario’s auditor general, the board has come to a different conclusion than the original assessor in 80 percent of the cases it has heard concerning people’s ability to manage their own finances.

It’s projected that the population of people over 80 is set to double by 2036. As part of their care, many seniors will be pushed toward nursing homes, regardless of their own preferences. In B.C., the Office of the Seniors Advocate surveyed nursing-home residents and found that nearly half don’t want to be there. About the same number say they don’t have any close friends in the facility.

“The biggest indignity faced by many older people is losing the right to live independently in their home,” says Marshall Swadron, a lawyer who often represents clients who’ve been evaluated as incapable.

“Some people are very proud of their homes, their independence, their ability to decide who comes in and who doesn’t—all of which you lose when you’re in any kind of institutional setting,” he adds.

The system that’s been created to protect seniors can also work to support them—to see them as individuals with their own preferences and desires. Samir Sinha, the director of geriatrics for Toronto’s Sinai Health System and the University Health Network, tells me a story about Josephine, a patient he got to know well. Josephine was blind and bedridden, and doctors wanted to place her in a nursing home—a decision she vehemently opposed. Some assessors may have seen Josephine as a woman incapable of deciding what was in her best interest. But, in this case, she kept her autonomy. Josephine stayed in her apartment and received government-funded visits from caregivers. She would lie in bed for most of the day and listen to her radio. To some, it may have appeared to be an awful way to live. To Josephine, it was the best life possible.

Advocate Laura Tamblyn Watts points to examples like this as evidence that a more supportive model is possible, one that doesn’t strip a person of their decision-making ability. “We always want to make sure that we are only removing the civil rights of the person to the smallest degree possible,” she says. Lately, some advocates have been promoting a “supported decision-making model” where seniors receive help understanding the consequences of their decisions and come to solutions alongside a team. The process is collaborative; it doesn’t rely on someone making decisions on the senior’s behalf.

How we spend our final years

The end of all of our stories is the same: we die. But how we spend our final years matters. I first met Jarvis long after his mother was admitted to long-term care. Shaw’s “new beginning” was over, and her health had continued to wane. She was on multiple medications, and her mind was often swarmed with fleeting thoughts that, like fireflies, dimmed and flitted away. Her notebook was long forgotten.

Jarvis regretted that the PGT had ever become involved in his family’s affairs. He felt that, rather than relieving the stress that age and illness brought to both his mother and his family, the PGT had made her decline all the more painful. He’d planted sunflowers in a window box in his mother’s nursing home. He planned to use them at her funeral.

Muriel Shaw died in January 2019. I met with Jarvis a few weeks afterward, at his home in Coquitlam. Her funeral had yet to be arranged, and her family members were trying to find a way to gather. I asked about the flowers in the window, and Jarvis told me they wouldn’t be making it to her funeral after all. “I let the sunflowers die,” he said. It was near the end of the season, he concluded. And besides, they didn’t get the care and attention they needed.

© 2020, Sharon J. Riley. From “When Is a Senior No Longer Capable of Making Their Own Decisions?” The Walrus (April 2020), thewalrus.ca.

Next, find out what a mother-in-law’s dementia diagnosis taught one man about caregiving.