People living in care homes are more afraid of dying of loneliness than of COVID-19, says a new report from the province’s watchdog for seniors.
“The comments we heard from hundreds of family members is a greater fear of death from loneliness” because of pandemic rules that limit visits, said B.C. seniors’ advocate Isobel Mackenzie.
“The large majority of respondents reported that the current visitor restrictions are not working for their family and some referred to them as inhumane,” according to Mackenzie’s summary of the survey findings.
Results of the survey of residents and families between Aug. 26 and Sept. 30 — Staying Apart to Stay Safe: The Impact of Visitor Restrictions on Long Term Care and Assisted Living — are being released today.
About 13,000 responses came from families, friends and residents in homes ranging from fewer than 50 beds to more than 250. Almost 20 per cent of respondents were in the Island Health region.
The survey summary says a majority of respondents reported that visitor restrictions are not working. It says visitation protocols need to be updated to better meet the needs of family members who serve as “care partners,” that visits should be shifted to residents’ rooms where possible, that more social visits should be permitted, and that a family council association should be created to speak for residents and families.
“We need to allow the opportunity for every resident to have a designated essential care partner who can have frequent visits of longer duration,” says the survey summary. “At a minimum we need to allow for at least one social visitor (in addition to the essential care partner visitor) with provision for additional social visitors as determined by individual circumstances.”
After Lynn Valley Care Centre in North Vancouver experienced the first COVID-19 outbreak in a long-term care home in Canada on March 7, and the first death two days later, the province reacted swiftly, limiting visits to essential staff and volunteers, screening or testing all long-term and assisted-living residents, restricting staff to working in a single site and increasing cleaning.
“We saw how quickly COVID-19 can spread in long-term care and we saw the devastating impact of this virus on the older population,” said Mackenzie.
Restrictions on visits were eased in June to allow one designated social visitor, but it was left to individual operators to apply the new rules based on their size and design.
Facing a year or more before life gets back to normal is “sobering” for long-term care residents, many of whom are in the last year or 18 months of their lives, said Mackenzie. For many residents, the only thing they look forward to is receiving a visit from their family, she said.
Before the pandemic, some family members visited daily or several times a week to provide personal care, from assistance with feeding to grooming. Now they’re allowed to visit at most about once a week for 30 minutes.
About 75 per cent of long-term care residents have private rooms, yet only two out of 10 respondents said they had been allowed a private visit in their family member’s room.
During the first seven months of the pandemic, 151 residents of long-term care died from COVID-19, while more than 4,500 residents died from other causes. “We learned that in their final months, weeks and days, most were not able to spend time with those they loved the most,” said Mackenzie.
The survey report includes personal stories, including one from a woman who says she was denied window visits with her husband, whose room overlooked a courtyard.
The woman’s husband celebrated his 75th birthday with her through a window (an exception), she celebrated her 70th without him, and they shared their 50th wedding anniversary six feet apart, through a fence. She called it “inhumane.”
“Had I been able to hold his hand and tell him that I still loved him and that I was not abandoning him, he might still be alive today,” she wrote. “He simply chose to stop eating or drinking. I believe he lost all hope of ever seeing me again. And what is the purpose of living if you have no hope?”
There are stories of one sibling being named the designated visitor with no accommodation for other siblings with, causing even greater stress for families.
A 94-year old WW2 vet wrote he is lonely, has suffered without his family’s care, and that this form of being “confined to barracks” is the worst he’s experienced.
Pandemic response measures are meant to keep seniors safe, but the whole goal of keeping them safe is so they can enjoy the limited time they have left with the ones they love, said Mackenzie.
“The challenge was and remains finding the balance between the risk from the virus and the need to have some quality of life,” she said.
“We cannot reduce the risk from COVID-19 to zero, but neither can we reduce the risk to zero for a death in long-term care due to a fall, a medication error, or infection.”
While outbreaks are still occurring, more than 80 per cent of long-term care and assisted-living sites have not experienced one, said Mackenzie. Of those that have, more than 60 per cent were contained to a single person — mostly a single staff person — and there have been no deaths in more than two-thirds of the long-term care and assisted-living outbreaks to date.
Dr. Bonnie Henry, provincial health officer, and Health Minister Adrian Dix, last week indicated that visits to long-term care will expand.
“We will be in the coming weeks making some adjustments that just support families and people who are living in care right now,” said Henry, who had seen the report last week.
Dix said he knows people are “struggling” with the visitor restriction on long-term care.
“We’re committed to making every effort to try and increase the amount of visitation that takes place, understanding that the risk in long-term care that continues to exist,” said Dix.