Calgary researcher hopes to improve ICU visitor restrictions during pandemic
Dying alone in ICU takes heavy toll on patients, families and health-care teams
Keeping visitors out of intensive care units when loved ones are fighting for their lives has taken a toll on patients, family members and care teams across the country during the pandemic, says a Calgary scientist looking to improve policies.
Visitor restrictions vary from hospital to hospital and have changed since COVID-19 first appeared in Canada.
While there were some exceptions for end-of-life situations, Alberta ICUs were generally closed to visitors early in the pandemic. The restrictions were put in place in an effort to conserve much-needed PPE and to stop the spread of the new virus.
These rules have eased somewhat as doctors and scientists have learned more about the virus that causes COVID-19, but families still don't have the unfettered access they did prior to the pandemic.
"The impact [the restrictions] ended up having was separating patients and families in the ICU during really difficult and stressful times. Family members are caregivers to their loved ones in the ICU," said Kirsten Fiest, epidemiologist and assistant professor at the University of Calgary.
After hearing anecdotal stories about the angst caused by this separation, Fiest and her team set out to document the personal impacts by interviewing patients, families and health-care providers.
"What we found is that the policies were distressing to everyone. But they were distressing in different ways."
According to Fiest, patients and family members struggled with being apart at such a critical time.
"The family members feeling guilty that they weren't able to be there, that their loved one died alone or they weren't able to make it on time," she said. "For the family members, this has added a layer of difficulty that ordinarily wouldn't have been there."
For Health-care providers, Fiest says, it's been extremely difficult as well. They're used to having family members around day and night. With visitors restricted, they had to share information, updates and discuss key care decisions over the phone.
"[They're] used to having a bond and rapport with family members.… [Now they're] having to witness a situation where maybe they're the only people present at the end of a patient's life as opposed to a family member, and having to play a different role than they maybe had to play in the past."
On the edge of death
Matthew Hicks understands the agony of watching a loved one fall ill unexpectedly.
His dad was rushed to hospital and admitted to the Foothills ICU two weeks ago with sudden kidney failure.
"He was very much on the edge of death," said Hicks, who was allowed to see his father.
"They were limited to only two visitors, so just my mom and I. Luckily for me, I'm an only child, so there weren't any siblings that wanted to visit. But my wife couldn't come with us and that was a little bit harder than I wanted it to be."
Alberta Health Services now allows up to two designated visitors for people in intensive care, but the health authority cautions these decisions can be influenced by factors including outbreaks and whether there is enough space for physical distancing.
Hicks's dad is improving. While his father has been moved out of the ICU onto a unit where the family can no longer visit, Hicks is grateful he could be there when the situation was critical. He knows other families aren't always able to be present.
"To know that he could have just gone from my life during the pandemic like that would have just been awful."
In the intensive care unit at Peter Lougheed hospital, Dr. Daniel Niven has witnessed the isolation as very sick patients have died without their family at the bedside.
"We went from what was typically a fairly open door policy for families to visit their loved ones in the ICU to what seemed to be completely the opposite.… We really had next to no visitors," he said.
"For many of them, it was really lonely for them."
According to Niven, doctors, nurses and volunteers do their best to be with patients and fill that void.
"That was the hardest part and still remains the hardest part. That's the most challenging is to see that very unnatural way of someone dying — which is to be alone. So I think that's what weighs on most health-care providers … which is just the loneliness."
Niven says that while the rules have changed, there are still cases where patients cannot have visitors, including when their family members are positive for COVID-19. There are also time limits on visits that weren't in place prior to the pandemic, according to Niven.
Alberta Health Services says it established a task force early in the pandemic and regularly updates visitation guidance to reflect feedback from family members, visitors, doctors and volunteers.
For Fiest, one of the stories that emerged from her interviews — and sticks with her — came from the family of a patient with dementia who was in the intensive care unit and didn't understand why no one was there as they died.
"Those, I think, were the stories that made me think that sometimes the effect of the restrictive visitation policies might have been doing quite a bit more harm than it was initially thought that they would," she said.
Fiest is now moving to the next phase of her research. She's looking to those involved — from families and patients to care teams and hospital administrators — for input on how ICU pandemic visitation policies could be improved.
She hopes to share a set of recommendations with health officials across the country and the World Health Organization by this spring.
"The policies were well intentioned when they were made and they were necessary, absolutely," she said. "But now that we're in the thick of it and have had a year to go through it all, I think we can start to use some emerging evidence to make them better."