COVID-19 restrictions on visitors in long-term care and assisted living in B.C., lauded for avoiding the thousands of resident deaths seen in Ontario and Quebec, have devastated the mental, physical and emotional well-being of residents and their families, according to a new report from B.C.’s seniors advocate.
Nearly half of family members say their loved one’s physical functioning has worsened during the pandemic, with 58 per cent reported deteriorating cognitive function and the same proportion noting worsened mood and emotional states, the advocate found.
The report, based on a survey of more than 15,000 residents and their family members conducted between late August and the end of September, highlights the essential roles family and friends play in the physical and mental health of loved ones in care.
But after almost nine months of lockdown restrictions and only marginal loosening of rules to allow for one social visitor per resident, seniors’ advocate Isobel Mackenzie is calling on the Health Ministry and provincial health officer to allow more visitors and increase family and resident input in decisions about the sector.
“The relief many family members thought was coming has not materialized for so many,” Mackenzie said.
The use of antipsychotic and anti-depressant medication for residents has also increased by seven and three per cent respectively since the start of the pandemic.
“My sense is that it indicates a high level of moral distress among residents,” added Dr. Joanie Sims-Gould, an associate professor in the department of family practice at the University of British Columbia.
Mackenzie says these troubling trends underline the urgency of keeping people connected with and supported by family.
“We imposed restrictions on visits because we cared very deeply about protecting our seniors,” Mackenzie said today. But residents “are more concerned about being separated from family members than they are about COVID-19.”
B.C. recorded its first COVID-19 outbreak at the Lynn Valley Care Centre in North Vancouver in March and Canada’s first virus-related death soon after.
Since then, 151 residents have died due to COVID-19, while more than 4,500 have died for unrelated reasons while in care.
Sims-Gould noted that many of these deaths may be related to the strain the virus has placed on already overworked care workers and the toll stress has taken on residents’ physical health.
“Maybe 4,500 is consistent with numbers from other years, but what we don’t know is if those deaths were untimely, sooner than expected or inconsistent with theirs and their family’s wishes,” she said.
Mackenzie said there is not yet any indication of excess deaths, but that future data could reveal that and other troubling trends.
Already, half of respondents who lost a loved one said they did not get to spend as much time with them as they would have liked.
“We aren’t protecting these people from dying,” said Mackenzie, noting that the average stay in long-term care is between 12 and 18 months.
Orders in March barred all social visits to limit the spread of COVID-19, and since then care home operators have been responsible for designating each resident’s sole eligible essential visitor and arranging their visits to carry out care work like helping with meals, personal care and emotional support.
Before the pandemic, a majority of residents’ visitors carried out these essential tasks in addition to care provided by the facility, according to the survey.
But only 48 per cent of survey respondents knew it was possible to apply to be an essential visitor, and just 42 per cent applied. Of these applications, 45 per cent were denied.
The majority of visits by approved essential visitors are now less than 30 minutes once a week and supervised in common areas, while they often lasted more than one hour in a resident’s own room pre-pandemic.
“We need to recognize that the long-term care system is really stretched and overburdened and that family members are an essential component of that care,” said Sims-Gould. “And in many cases family members are the voices of their loved ones who are residents.
“So you don’t just eliminate an essential part of the system, you find a way to make it work.”
Mackenzie said facilities should allow essential visitors to come more frequently and for longer, meeting in the resident’s room if possible.
Around 75 per cent of residents have individual rooms, and she added not having to supervise and arrange visits in common areas would release a “huge pressure valve” on care staff.
But while essential visitor changes can happen without provincial intervention, provincial health officer Dr. Bonnie Henry would need to issue a new order to allow for the recommended increase in social visitors.
One designated social visitor has also been allowed since June, but the rollout has varied across facilities, with some visits not beginning until September.
And with many spouses and children having to make agonizing decisions about who can visit a family member, Mackenzie wants to see the number and frequency of allowed visitors expanded by the provincial health officer.
Noting new high case counts in Fraser Health, she suggested the province might diverge from its uniform approach and take a region-specific strategy to restarting as many visits as possible.
In an emailed statement to The Tyee, a Ministry of Health spokesperson thanked those who participated in the survey and said Mackenzie’s recommendations would be considered by the province.
“Protecting residents, while balancing the desire for connection, is an incredibly difficult balance that our health leaders wrestle with every day,” read the statement. “The Seniors’ Advocate recommendations help inform these ongoing deliberations.”
The report described also the heartbreaking personal experiences of the residents and loved ones mostly barred from seeing each other for the last nine months, with many noting residents with dementia or Alzheimer’s still have difficulty understanding the separation and why they can’t touch or visit more often.
“My reason for moving here was to be close to him and support him in our journey with dementia. It has been very hard on him to be separated from me, our daughters and grown grandchildren,” wrote the wife of a long-term care resident, who lives in an apartment attached to his facility. “It has been six months since I was up to his room. I realize how hard everyone has worked to protect us, but time is not on our side and staff, who are excellent, come and go from the building. I live here and just want to support my husband.”
Mackenzie called on the government to pass legislation to establish an association to represent residents and families of those in long-term care and assisted living and require consultation on decisions that affect them.
“We need that, and we needed that way before this. This survey demonstrates the frustration that these families and residents feel for not being heard is almost as harmful as the separation of residents and family members…. They feel powerless,” said Mackenzie.
Family councils do exist at some facilities, but they are not legally required and only have a relationship with the care provider, not the province.
“We need to knit that together and bring that collective experience up to the health authority level and the provincial level,” said Mackenzie.
While the risk of COVID-19 transmission in homes can never be zero, Mackenzie said that the last nine months have brought much learning about how to prevent the transmission of the virus.
And family are ready and willing to take every precaution possible to keep their loved ones safe.
“This survey has told us that the capacity for family to care for one another is boundless,” said Mackenzie. “And that when we know our time is limited, we focus on what matters most.”
“This knowledge must guide us as we focus on the ultimate goal of managing this pandemic.”
Sims-Gould echoed Mackenzie’s urgency, noting long-term care “has been chronically understaffed and overburdened for more than a decade [and] the demand for complex care for residents has only increased.”
“People are entitled to live their life out in a humane and well cared-for way, and the way the system has been functioning hasn’t enabled that in many cases,” she said. “We have an opportunity to be better, and residents and families need to be a part of that.”