Eric Li poses with his mother, May Tsoi, displaying her artwork called Koi Koins.

Image Credit: Michelle Gamage, Local Journalism Initiative

Groups of seniors and their loved ones are banding together to improve the quality of care at long-term care facilities across the province.

The grassroots groups meet every few weeks or months to discuss concerns related to their long-term care facility. By sharing these concerns with each other, they can identify issues impacting multiple residents. From there, they work together to advocate to management to create change.

Some of these advocacy groups have existed for more than a decade. But many of these groups, known as resident and family councils, were formed after the COVID-19 pandemic shone a spotlight on “the horrors of bad decisions” made during those years.

The early pandemic years surfaced “the dysfunctional things in long-term care and senior’s care in general,” says Shirley Lee. She chairs the Fair Haven Homes Society family council in southeast Vancouver. Her 94-year-old mother, Sok Kuan Lee, is a Fair Haven resident.

Lee has been involved with the family council for six years. She says before the pandemic there were around five regular attendees, which grew to seven during the pandemic and now hovers closer to 12. Or 17, if there’s an interesting speaker that night.

Eric Li and his mother, May Tsoi, at the Broadway Lodge, where Tsoi is a resident. Tsoi had been sitting and doing artwork when her son walked over. She lit up and stood to greet him.

Image Credit: Michelle Gamage, Local Journalism Initiative

Family councils on the rise in BC

The jump in new councils could also be thanks to fall 2022 provincial guidelines published by the B.C. Ministry of Health that outlined what councils can do and how to set one up and affirming how long-term care facilities are required to help facilitate these independent groups.

Each long-term care facility in B.C. can have its own resident council (made up of folks living at the facility), family council (made up of loved ones or caretakers of those living at the facility) and family and resident council (where everyone meets together).

Representatives from these councils also sit on regional councils, which are organized across the province by health authority and meet twice a year. At the provincial level, representatives meet with the Health Ministry four times a year.

The provincial level has two bodies that do similar things. There’s the Independent Long-Term Care Councils Association of BC, which is grassroots-organized and a registered society, and the Provincial Forum for Resident and Family Councils, which is government-organized.

The rise in new councils could also be thanks to the hard work and advocacy of dedicated volunteers like Lisa Dawson. She is vice-president of the Independent Long-Term Care Councils Association of BC, chair of the regional Vancouver Coastal Health association and co-chair of the Louis Brier Home and Hospital family council. Her 92-year-old father is a Louis Brier resident.

Several people who spoke to The Tyee for this article credited Dawson for inspiring them to get involved with or form their own council.

Breaking cycles, building empathy

Dawson remembers the “shock” of moving her father into care 13 years ago. There wasn’t a guidebook to ease them through this major life event.

When a resident or family member wants to raise a concern, they generally tap the shoulder of the nearest available staff member and ask them to address any number of daily issues. Those could be related to dehydration, wound care, personal hygiene or menu concerns, she says.

These interactions can be emotionally charged and aren’t generally effective or recorded because staff are already run off their feet.

But they happen over and over, which adds to frustration on all sides, she adds.

Councils help break that cycle.

“When you can make a collaborative and calm effort to communicate with management, everything improves,” she says. “This helps deepen the relationship and deepen empathy on both sides.”

‘The problem with long-term care is lack of communication’

Louis Brier resident Sébastien Paul says that “council means you’re not beating your head against the wall” when trying to advocate for yourself. It’s created a “night and day difference” when advocating for improved care.

Paul lives with multiple sclerosis. At 54, he is quite young compared with his fellow residents. He says he was placed in care due to a series of unfortunate health events and is working on moving back into the community where he can thrive with supports from hired help.

“I’m able to advocate for myself but the problem with long-term care is a lack of communication,” Paul says. “Staff look at you and go ‘Mm hmm,’” he says. And they “look like they’re listening but nothing is changing.”

He understands many of his fellow residents have cognitive decline and require a high level of care. But he was frustrated when staff seemed to ignore his questions. He felt like they were acting as if he were similarly impaired.

Paul joined the resident council at Louis Brier to raise the issue of staff talking over residents’ heads.

He was able to speak with management, who told staff, “‘That’s not how we do things here,’” Paul says.

“This is a power we didn’t have before,” he says.

“They pay attention and listen to us. That’s huge.”

With advocacy, empowerment

Members of resident and family councils are brimming with success stories.

Paul remembers the former “tenacious” chair of the Louis Brier resident council, Ron Wolfson, who advocated for the entire complex to have Wi-Fi during the COVID-19 pandemic. Wolfson passed away last month.

Thanks to Wolfson’s advocacy, “people with phones or iPads could keep in contact with their families and families could check on them too,” Paul says.

Eric Li is chair of the Broadway Lodge Family Circle (a new name for its family council). His mother, May Tsoi, is a resident at Broadway Lodge.

He recalls when one member raised the issue of her father loving hot sauce and being dissatisfied with the spice level in his food.

Within a week of bringing this issue to management, three bottles of hot sauce appeared in the dining hall, giving residents the opportunity and autonomy to spice up their own food.

Fran Harrison, a member of the family council at Louis Brier, where her mother is a resident, says she was able to help update the facility’s intake process, which has “helped a lot of families that have moved in,” she says.

The day her mother moved in, Harrison felt like paperwork was “thrown” at her and later misplaced, she says. She spoke with council and learned of other families with similar experiences. Then she offered management recommendations for how to provide new residents with paperwork over a staggered timeline, so a resident has time to settle in before they and their families are tasked with filling out less critical forms. Management adopted the recommendations.

Resident and family councils help you tap into a network of advocacy and knowledge, Li says.

In his mother’s room at Broadway Lodge, he points to a vase of brightly coloured fake flowers. She loves plants, but living ones were getting overwatered, he says. A council connection recommended fake flowers because they can never be overwatered.

Li says advocacy through the Family Circle lets him speak up for residents who can’t speak for themselves, who don’t have family to advocate for them or whose family lives too far away to visit.

Council can also help educate residents and their loved ones about what goes on behind the scenes at a facility, which helps foster gratitude rather than grudges, Li says.

As an example, he pointed to a cook who came in and talked about their budget, how they’re responsible for ordering and preparing food and for charting who didn’t like the meal and who asked for seconds.

Council can also bring in speakers to lecture about conditions like dementia or Parkinson’s, which helps families understand what is happening to their loved ones, Harrison says.

Staff are often too busy looking after residents so “it can be hard for them to find time to look after families too.”

Underlining the importance of appropriate care

Councils can help advocate for culturally appropriate care at long-term care facilities.

There’s a long waiting list for long-term care homes where residents will be able to speak their own language and identify with their culture through culturally appropriate festivities, food and ways to communicate grievances, says Queenie Choo. She’s the CEO of the United Chinese Community Enrichment Services Society, also known as SUCCESS, and the SUCCESS Foundation.

Accessing culturally appropriate care can help residents flourish and live longer, she says.

But when cultures clash, seniors may be unable to advocate for better care because they were raised to “not rock the boat,” or believe that staff know best, even if they are suffering, Choo says.

They also may fear repercussions if they speak up, she adds.

Culture clash can have subtle impacts.

Shirley Lee says her mother, Sok Kuan Lee, is 94 and lives with dementia and Parkinson’s disease. When she is served food prepared by Fair Haven staff, she needs to be fed. Otherwise, she won’t eat her dinner.

However, if Lee or her siblings bring in food they prepared, their mother will feed herself.

Eating familiar foods plays into helping residents get enough nutrition, Lee says.

She recognizes feeding residents culturally appropriate food may go over budget for most facilities.

But a solution could still be possible with a little creativity on the part of staff and resident and family councils — and, she hopes, a boost in funding at the provincial level.

The sky isn’t the limit

Resident and family councils are making some headway in improving care for residents of long-term care facilities. But there are limitations to how much they can accomplish.

Few people know about the councils or have time in their busy schedules to regularly participate, Dawson says.

The Ministry of Health put out regulations to help support the creation of councils but didn’t allocate funding to run them, she adds.

Funding could help the councils run more smoothly. Funds could cover the price of a shared Zoom account or support a long-term care staff member’s attendance at the meetings. They could help set up microphones and assist with hospitality such as bringing water to the meetings, she says.

It can also be discouraging for council members who put lots of time and energy into council not to be able to watch it grow, Lee says.

Speaking from her experience with SUCCESS, Choo notes how language can also be a barrier and councils should take care to avoid defaulting to English.

There’s also the issue of residents passing away and taking their wealth of experience and knowledge with them, says Farinaz Havaei, an assistant professor at the University of British Columbia school of nursing.

One way to combat that is helping resident council members systematically document their knowledge.

Havaei is studying what factors contribute to a council’s effectiveness and has produced a documentary and a self-assessment tool councils can use to find their strengths and weaknesses.

Next, Havaei says, her team will analyze their data to see if they can find patterns between, for example, public and private or urban and rural facilities.

Small victories are possible — and transformative

Small victories are possible when there are positive relationships between residents, their loved ones and staff.

Eric Li says his mother, May Tsoi, loves dim sum. She lives with dementia and as the disease progressed, she became unwilling to leave Broadway Lodge to eat with her kids, or to eat the takeout they brought to her.

Li did some quick brainstorming with staff. They decided to serve the dim sum to Tsoi on the dishes usually used by the facility in their dining hall.

This allowed mother and son to happily tuck into their time-honoured tradition together.

When one resident or family flourishes, the experience lifts up others around them in a process Li calls “positive momentum.”

These benefits can spread across facilities and — in the future — maybe spread across the province.

But just as often, staff’s hands can be tied by regulations.

Two months ago, Shirley Lee’s 94-year-old mother, Sok Kuan Lee, caught COVID-19. The day her quarantine ended, Lee went to see her and found her in emotional distress.

“I stayed with her until 11 p.m. that night and said, ‘Mom, I gotta go home,’” Lee says. “She looked at me and said, ‘I can’t stay here alone. Please stay with me.’”

Lee asked staff if she could stay and sleep in a chair in her mother’s room but was told she wasn’t allowed.

“They said they’d take care of her. But they can’t because she was emotionally distressed more than physically distressed,” Lee says, adding her mother doesn’t speak English and staff rarely speak Chinese languages.

There’s a lot of work that needs to be done to improve how we care for the mental and emotional health of seniors, she adds.

Senior care is deeply entrenched in the way it has always operated. Trying to change it can sometimes feel like changing the direction of a huge freighter, Lee says. It’s also concerning to see the momentum created during the COVID-19 pandemic fizzle out, she adds.

But she remains optimistic that councils are moving in the right direction.

“I trust advocates are bringing the right issues before the right people and those issues are at least being heard,” she says.

“Before there was no organization and no way to [communicate with those working at] the top.”

— This story was originally published by The Tyee.

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