Husband keeps showing up at the hospital every day to help care for his wife. A note on the whiteboard in her room says she is to be moved on Sept. 30. “I won’t let them take her,” he said
A Surrey senior is questioning why health authorities have intervened to move his wife, who suffers from a rare degenerative brain disease, into a care home against what he says are her wishes and best interests.
Jackie Cameron, 64, was diagnosed in June 2023 with Progressive Supranuclear Palsy, an incurable illness that affects walking, balance, movement and executive functioning, and creates extreme frustration for her that sometimes results in crying, screaming and involuntary movements.
Doctors have told the couple she may have only six months to a year to live.
“I want to do everything I can to make the best of the time Jackie has left,” said her husband, Rick Zeller, 66.
In December 2023, Cameron was admitted to Surrey Memorial Hospital with a bowel blockage. She recovered, but the hospital won’t release her into his care, said Zeller.
Zeller said social workers from the Fraser Health Authority urged him to put her in a care home.
“I said no.”
He wants to take her home and care for her with help from home-support workers, as he did before her admission.
An assessment made by a registered social worker at Surrey Memorial, dated July 24 and provided to Postmedia News by Zeller, stated that Cameron expressed that she didn’t want to go to a care home and “started to cry and scream” when asked about it.
Zeller said he visits his wife daily, helps her out of bed and into her wheelchair to go to the bathroom — just as he does at home — and calms her down when she becomes agitated.
He repeats the promise he made when they signed a legal representation agreement after her diagnosis naming him as her “substitute decision maker” for health matters: She would never go into long-term care.
But on Sept. 4, Zeller was sent a letter stating that B.C.’s Public Guardian and Trustee had determined he didn’t “meet the criteria” of a substitute decision-maker.
The Public Guardian and Trustee, a government agency intended to help vulnerable individuals, has authority to intervene if it believes a vulnerable adult is facing abuse or neglect or is incapable of making an informed decision.
Under the Health Care (Consent) and Care Facility (Admission) Act, the agency may step in as a temporary substitute decision-maker if an adult is incapable of providing consent to health care and there is no one else authorized or able to fulfil their role as substitute decision-maker.
To qualify to give or refuse substitute consent under the Act,a person must “be willing to make a decision in the adult’s best interests.”
Zeller and Cameron were informed the agency had stepped in as the new substitute decision-maker, and that it was consenting on her behalf to admit her to Care Life Fleetwood, a long-term care home.
The Public Guardian advised Zeller to seek legal advice should he disagree.
Jonathan Blair, a Vancouver human rights lawyer, said representation agreements naming a substitute decision-maker aren’t set in stone.
Blair couldn’t comment on Zeller’s case and doesn’t represent Zeller, but said there are limitations to such agreements and authorities can override them in certain situations.
“These situations can be very complicated,” he said.
A substitute decision-maker must act in the best interest of that person, and understand that those interests may change over time as their health needs change.
“The processes the (Public Guardian and Trustee) uses to make its decisions should be transparent,” said Blair. “In the health-care authorities it is often very unclear to those being taken under control, for both the patient and the loved one, to know what they can do next, how they can challenge this or find out more information.”
Zeller said pressure to put Cameron in a care home began after her admission to Surrey Memorial when social workers noticed scratches on her face.
Zeller said his wife was questioned by a social worker while she was heavily medicated and without a nurse or doctor present.
“I got accused of hitting her,” said Zeller. “It’s just not true.”
“They investigated … they closed the case. He’s not abusing her, he’s not neglecting her,” said a Fraser health medical professional whose name is being withheld because they’re not authorized to speak publicly on the matter.
“I think they should send her home,” said the doctor, who is familiar with Cameron’s case and who has observed Zeller caring for his wife. “They can have home support.”
Nevertheless, social workers contacted the Public Guardian and Trustee.
Fraser Health officials told Postmedia they couldn’t speak to the specifics of Cameron’s care, but confirmed the Public Guardian and Trustee of B.C. is involved.
The Public Guardian and Trustee wouldn’t comment on Cameron’s case citing privacy concerns but said that since Part 3 of the Health Care (Consent) and Care Facility (Admissions) Act came into effect in November 2019, the agency has received more than 1,100 requests to provide consent to care-facility admission.
In roughly 60 per cent of cases, the agency acted as substitute decision-maker for care-facility admission.
In November 2023, Kasari Govender, B.C.’s human rights commissioner, launched an inquiry into involuntary detentions under the Adult Guardianship Act, which outlines the decision-making process for admission to care facilities including who makes the decision.
The commissioner has ordered seven health agencies across the province, including Fraser Health and the Public Guardian and Trustee, to release data on involuntary detentions of adults, including whether the Act allows designated agencies to detain adults in a care facility without their consent.
“I cannot understate the importance of ensuring (Adult Guardianship Act) detentions strike a reasonable balance between ensuring the safety of vulnerable adults and respecting their autonomy,” said Govender in a news release.
The report will be released in the new year.
Meanwhile, Zeller keeps showing up at the hospital every day to help care for his wife. A note on the whiteboard in her room says she is to be moved on Sept. 30.
“I won’t let them take her,” said Zeller.