With her hands folded in her lap, Ruth Prevost, 91, sits quietly on the couch by the sliding glass doors, unaware that she is at the centre of a family feud.
A diminutive woman with shiny white hair and bright green eyes, Prevost has Alzheimer’s. Since 2009, when she was admitted to hospital after a fall, a bitter family dispute has been raging over what she needs, and who is best equipped to provide it.
The case raises fundamental questions of personal freedom, the role of government in overseeing our health care decisions and what is expected of those who act for us when we are no longer able.
Ruth Prevost’s husband Marcel, 83, believes she should live with him, at home or in a private assisted living facility — somewhere they can be together.
Meanwhile, her daughter, Donna, insists she needs the round-the-clock care and medical supervision of a nursing home.
The conflict escalated last month, when Marcel Prevost discharged his wife from a nursing home in Peterborough, Ont., prompting a legal challenge from the provincial agency that oversees admission into long-term care facilities.
“As long as I can put one foot in front of the other, I’m not going to sign my wife into a home,” Prevost said in an interview at the private assisted living facility where the couple is now living. “I’ll spend every dime I have to keep her out of there.”
Numbers set to double
The number of Canadians with some form of dementia is set to nearly double in the next 20 years, from 740,000 to 1.4 million. Yet as more families make decisions about what’s best for seniors who can no longer decide for themselves, experts say the laws that govern elder care do not reflect the complex family dynamics that are often at play.
“When this legislation was drafted, people didn’t really anticipate that it would be used as a mechanism for families to pursue long-term family disputes, but that happens actually with fair regularity,” said Lauren Bates, a senior lawyer at the Law Commission of Ontario.
That could soon change, however. With concerns about how seniors in mind, Bates is heading a major review of the laws that concern legal capacity, decision-making and guardianship.
Public consultations will form the basis of recommendations aimed at ensuring that “the person affected remains at the centre of decision-making,” she said. “There’s a lot of controversy around how that might be done.”
The legal wrangling over what’s best for Ruth Prevost offers a glimpse of what’s at stake.
About a decade before she landed in hospital with a broken leg, she named her husband as her power of attorney. When she could not longer make her own personal care decisions, he became what’s known as her “substitute decision-maker.”
Under Ontario law, when making decisions about her care, he must first consider any prior wishes she may have expressed. Without this direction, he has to act in her “best interests,” a somewhat abstract requirement that can be open to interpretation.
Ruth Prevost designated her daughter, Donna, as next in line in the event that her husband became incapable of making decisions for her.
After her leg healed, Marcel Prevost wanted to bring his wife home, but medical staff recommended she be transferred to a nursing home, according to his lawyer, D’Arcy Hiltz. (Hiltz, an expert in the area of Ontario’s consent and capacity law, is assisting in the Law Commission review.)
When Marcel Prevost objected, the Community Care Access Centres (CCAC), which was established by the provincial health ministry to oversee admission to long-term care facilities, challenged his decision. However, that challenge was withdrawn after a health care professional declared Marcel Prevost incapable of making the choice. The power passed to his daughter, and Ruth Prevost was moved to Fairhaven, a long-term care home in Peterborough.
(Hiltz said the declaration of incapability was limited to that decision, and going forward, Marcel Prevost remained his wife’s substitute decision-maker.)
Donna Prevost told The Star that she did not want to jeopardize the case by discussing her specific concerns. She said only that Ruth Prevost “was not getting the proper care at home,” and that she is advocating for “what’s best for my mom.”
“It shouldn’t be a family fight,” she said. “It should be, ‘What does this little lady need, to have the proper care?’”
Marcel Prevost said he often butted heads with staff at Fairhaven, and claimed his visitation rights were restricted on several occasions. He said he believed his wife was being over-medicated, overfed and not getting enough exercise, among other concerns.
What does this little lady need, to have the proper care?
Fairhaven’s executive director, Joy Husak, declined to discuss details of the case, citing privacy legislation.
“Ruth was very well cared for at Fairhaven by our staff and got along with all our residents,” she said.
In mid-April, Marcel Prevost discharged his wife, against the medical advice of Fairhaven staff. He said the nursing home called police, and officers were on scene for several hours before he was allowed to leave with his wife.
Husak said Prevost signed the appropriate paperwork and had the right to discharge his wife. She would not comment on why police were called.
Peterborough police confirmed that officers were called to Fairhaven to stand by to keep the peace. Police also attended the Prevost home in Peterborough on another occasion.
Hiltz said he suspects that police were called by a third-party to conduct “a wellness check.” No charges were laid in either incident.
After Ruth Prevost was discharged from long-term care, CCAC again challenged her husband’s decision with an application to the province’s Consent and Capacity Board, a tribunal that hears disputes related to medical decisions, including end-of-life and mental health issues.
Here, it’s a smaller place. It’s not bureaucratic. If I have a complaint, I can go right to the top.
Marcel and Ruth Prevost recently moved into a quaint, private assisted living facility on the outskirts of town, called Tranquility Place, where the personal support worker who runs the home cooks their meals and oversees their care.
“Here, it’s a smaller place. It’s not bureaucratic. If I have a complaint, I can go right to the top,” Marcel Prevost said. “It’s more our style.”
Donna Prevost wants her mom to return to a nursing home.
“In long-term care, it’s a secure environment,” she said. “If and when she needs medical help, it’s there immediately.”
As Hiltz sees it, the CCAC, which oversees admission to long-term care, does not have the jurisdiction to challenge discharge decisions.
Gail Scala, spokeswoman for Central East CCAC, said she could not comment on the case. She said CCAC has supported some discharges from long-term care in the past, but has intervened in other cases where there were concerns about “care needs.”
After a previous application was withdrawn, the CCAC filed a new challenge in mid-May. The Consent and Capacity Board has yet to schedule a date to hear the case.