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A push to give the 'family voice' real power in long-term care

Informal councils, formed at facilities to advocate for residents, want true recognition and input.
Kate Cochlan moved her husband Trevor Nash into long-term care in 2017, and subsequently created a family council at his facility to advocate for his needs. 'A family or friend who sees how things are and can speak up is a big help.'

In 2017, Kate Cochlan moved her husband, Trevor Nash, who had been diagnosed with Alzheimer’s, into the same long-term care facility where both of her parents were living. Less than a year later, she learned that all of its staff had been let go. 

It was May 2018, and the subcontractor that operated Lakeshore Care Centre in Coquitlam was retiring. It would be up to a new operator to hire staff, and they weren’t obligated to rehire the unionized current employees. 

The 110 care aides at Lakeshore had unionized for a second time in April 2018, just weeks before they were informed of their forthcoming layoff.

Following deregulation of the long-term care sector under the BC Liberal government in 2001 and 2002, Lakeshore’s operator had withdrawn from the provincial collective agreement that initially covered its staff and rehired them using a subcontractor at lower wages. The practice, known as contract-flipping, is used by for-profit care providers to cut costs.

Cochlan could see how difficult the unionization fight had been, and she was thrilled workers would be able to negotiate sick pay so they didn’t work while ill, and better hours and benefits that would keep staff turnover low.

Then, she learned of the staff layoff via a notice pinned to a bulletin board in the care facility’s common area. “We were pretty appalled,” she said. The staff “are the people who know our people.”

For families, keeping the same staff was a matter of good care and continuity for their loved ones. And so the Hospital Employees’ Union, which represents Lakeshore staff as well as the vast majority of care staff in B.C., suggested they establish a family council to increase pressure on the operator.

Family councils, formed by family members of residents in care, work to advocate for the needs of residents and their family caregivers to facility operators and provide peer support for people navigating complex care policies for the first time.

They are not mandatory in B.C. and don’t exist in every long-term care facility. Those that do exist vary in degree of independence from the facilities themselves.

The Hospital Employees’ Union brought over Kim Slater, who had set up family councils on Vancouver Island, to teach the families and caregivers of residents at Lakeshore Care Centre how to do the same.

With Slater’s help, Cochlan built an independent family council from the ground up with about a dozen family members representing a total of 56 residents in the facility. They successfully lobbied the new subcontractor to keep the current staff on the same terms.

The relationship between Lakeshore Care Centre’s family council and its management was never adversarial, Cochlan said. Eventually, the family council was allotted space on-site to meet every other month, and the director of care often attended the first few minutes of the meeting to answer questions from caregivers.

“The fact is,” Cochlan says, “a family or friend who sees how things are and can speak up is a big help.”

Family councils provide a way for family and caregivers to advocate for the interests of residents to staff on matters ranging from small things like laundry frequency to ensuring designated care hours are fulfilled for each resident. They can also be an invaluable tool to ensure that caregivers are supported.

But setting up a council isn’t always as easy as it was for Cochlan and her colleagues.

Family councils are not even mentioned in regulation and legislation surrounding long-term care. A care home operator is under no obligation to listen to or engage with an independent family council that is established, let alone provide space or inform new residents’ families they can join.

Slater, who chairs the Vancouver Island Association of Family Councils, which represents councils for facilities in 13 Island Health municipalities, said families have been raising the alarm for years on issues of staffing and care standards in long-term care facilities. 

Letters to the province penned by members shared with The Tyee date back to 2015, but Slater and Cochlan say they have never been answered.

Instead, it was the tragedies of the COVID-19 pandemic that finally prompted the province to begin addressing staff shortages, inadequate sick leave, and part-time scheduling norms that pushed many staffers to work in multiple facilities to make ends meet.

“Why wouldn’t you talk to the very people in care, the canaries in the coal mine?” asked Slater, whose mother passed away in a Vancouver Island long-term care facility a few years ago. “We’d be a really valuable asset for the Ministry of Health to consult with… but that hasn’t been happening.”

Nola Galloway worked to establish a family council in 2010 at a Vancouver Island care facility during a labour dispute similar to the one Cochlan witnessed at Lakeshore in Coquitlam.

But she said her family faced hostility from the facility. They were forced to meet off-site and families worried about retaliation from management for bringing up concerns or suggestions. The Tyee is not naming the facility because it is not able to independently verify some facts of the situation.

“If one thing surfaces, it’s always the fear of retaliation,” said Galloway, whose father was a resident for seven years. “It’s systemic, it’s rife through all the facilities.”

Galloway had noticed care aides helping serve lunch or working in the kitchen when she visited, and through a lengthy reporting process to the Vancouver Island Health Authority, learned many of these hours had been misreported as direct care hours.

Their perseverance in gathering and sharing observations resulted in finding that more than 30,000 hours of care — totalling $500,000 in care aide wages — had been inaccurately reported by the facility over four years, she said.

The misreporting may have been unintentional, Galloway said, but the revelation nonetheless opened her eyes to the importance of family being able to advocate for their loved ones.

And as a result, 20 more daily care hours shared among all residents were mandated at the facility by Vancouver Island Health Authority.

“A lot of families give up because they’re beaten down,” said Galloway. “Where they will see things happening is when we have stronger family councils.”

But family councils are nothing if they are not recognized and independent, says Delores Broten.

At the Courtenay facility where her husband used to live, Broten worked to create an independent family council.

As soon as she did, management demanded to attend meetings. When the council asserted meetings were private and for family, management created their own internal family council, and refused to allow notices to be posted about the independent group.

Getting in touch with patients’ family members in order to form family councils can be a challenge because management often won’t share contact information or include family council information in their own communications. Management hostility, Broten said, only makes it worse.

The pandemic has made it even harder for families to connect with other caregivers, Cochlan said.

Cochlan lost both her parents within a few months of each other just before the pandemic. Her husband passed away due to COVID-19 complications in late December during an outbreak.

“It was brutal, just brutal,” Cochlan said, describing what it was like to lose her husband without being able to visit for weeks during the outbreak. Peer support from fellow family members helped her get through those difficult nine months.

“You never feel like you’ve done enough,” she said. “Strong family councils would go a long way to supporting care.”

Last November, B.C.’s independent Seniors’ Advocate Isobel Mackenzie recommended the Health Ministry and her office create a provincial association of long-term care and assisted living councils in response to the emotional and physical devastation that visitation limits wrought on residents and their loved ones.

Family members should be included as stakeholders alongside staff and operators, she argued in her report.

“These councils are unique to each care home and have no collective voice at the health authority or provincial level,” reads Mackenzie’s report. An association “would bring to the table the voice of residents and their family members in equal measure with those who own and operate care homes and the staff who work there.”

The Health Ministry said at the time Mackenzie’s recommendations would be considered in future planning, but it has not committed to implementing her suggestion for family councils.

In addition, the four family members The Tyee spoke with all agreed that the province should require facilities to provide space and share contact information, as well as recognize family councils and be accountable to their feedback.

The province should also be legally mandated to consult with family councils, who have been raising important issues for years, Galloway and Slater said.

“Long-term care seems to lurch from one crisis to another,” said Slater. “We’ve got to do better than this.” 

Ensuring operators and government are obligated to consult and be accountable to family would value the essential care family provides, Galloway added.

“The whole mindset has to change, and it’s going to get our voice at the table alongside ministry and health authorities,” said Galloway. “Where’s the family voice? We need to be at that table.”