At age 103, Margaret Downey’s lifeline is the daily visits of relatives, such as granddaughter Mary-Alex Willer. Stringent visitation rules introduced to contain the spread of COVID-19 in seniors residences now means zero visitors to her Winnipeg nursing home and zero contact with family. On cue, Margaret has become more confused due to lack of stimulation and familiar faces.
“It’s heartbreaking to think about her being by herself and not happy,” says Willer.
Hospitals and seniors residences across the country have instituted policies to ban visitors as a measure to control the COVID-19 pandemic. Limiting the potential for coronavirus to be brought into these settings by visitors is a strategy to minimize risk for patients, who are frail and vulnerable; and for staff, who must remain as healthy as possible in order to continue working. However, restricted visitor policies have resulted in patients feeling abandoned and family members feeling helpless, says Miriam Mottiar, a palliative care physician at The Ottawa Hospital.
“The patients don’t have their usual advocates anymore … so they’re worried and they’re scared. They don’t know what’s happening. They don’t know why they can’t have their usual people around them,” Mottiar says.
Mottiar says family reaction differs widely. Some are very understanding, and don’t want to come in because they are worried about being exposed or exposing their loved ones to coronavirus while at the hospital. Others are “very, very distressed about it,” worried that something sudden might happen and that they will not get in to see their loved ones in time. And some families “really advocate to be able to see a family member who is not imminently dying.”
Downey has lived in the nursing home for almost two years. Prior to that, she was a feisty, independent woman living in her own apartment until she broke her hip and needed more care. She was slowly getting used to living in the nursing home. It was the constant contact with her family – four children, 16 grandchildren, 30 great-grandchildren — that made things tolerable for her. She enjoyed going on outings and to the movies. And she loved the fresh-cut flowers that her family always made sure to bring. But all of that has changed now.
“I really notice that she’s slipping a bit,” says Marnie Puchniak, Downey’s daughter. “She needs to see somebody’s face.”
Puchniak worries her mother is not getting as much help as she might need because her personal attendant, hired by the family to visit up to five times per week, is also not able to visit.
“It really disrupts the routine of her life.”
To compensate for the visitor restrictions, the “children have been inundating her with cards and letters. They’re doing art projects and things…. It gives the kids something to do and hopefully it brightens her day,” says Puchniak. The family has been phoning Margaret frequently but finds that it is not the same as seeing her in person.
“It is quite stressful. Worrying about her, worrying about her isolation, also worrying about her getting sick and being all alone. You know, that’s not nice to think about.”
At the Ottawa Hospital, Mottiar says she and her team are able to permit visits between her patients and their families on compassionate grounds because the hospital has made an exception to the visitor restrictions for patients receiving end-of-life care. However, only patients who are imminently dying – who are in their final hours or days of life – are allowed visitors. “I feel this kind of load to accurately predict what’s going to happen and we’re not that good at [always being able to predict how long someone has left to live.]”
Mottiar says that staff is finding it difficult because the team relies on families to provide information and to help them understand patients, especially those who cannot communicate for themselves. As well, the one-on-one attention that families provide in helping patients to eat or sitting with patients who might be confused or agitated is no longer permitted due to visitor restrictions. The staff that do see patients must wear masks, which can be disorienting.
“As a human being, it breaks your heart. Because normally, we encourage families to be at the bedside as much as they want, for 24 hours a day,” says Mottiar.
Some families are even opting to take their loved ones home and have marshalled family resources in order to do so, figuring that it is the best option under the circumstances, albeit stressful.
In the meantime, social workers and recreation therapists are working hard to facilitate virtual visits between patients and families, using available technology such as FaceTime and Skype.
“On the one hand, we understand the need to socially distance and restrict visitors, from an infection control perspective. On the other hand, it’s very distressing to watch our patients, who are sick and dying, be distressed because their families are not there. So we feel for them on a very, very human level,” Mottiar says.