Sinikka Salmi doesn’t understand why she wasn’t allowed to visit Marvin, her husband of 55 years, at the Thunder Bay Regional Health Sciences Centre the week before he died. “He just wanted me there so bad,” says Sinikka. “The first thing he would say when he phoned is, ‘Are you coming today?’ I say, ‘They won’t let me come up.’”
Sinikka says her husband Marvin’s health began deteriorating last February. After a particularly bad fall left Marvin with fractured vertebrae, he was admitted to the TBRHSC, where he underwent an operation. “He came through surgery fine,” says Sinikka, and was later transferred to St. Joseph’s Care Group for rehabilitation.
One day after therapy, Sinikka says Marvin collapsed onto his bed and was rushed back to the hospital, where he was admitted to the intensive-care unit. After receiving treatment in the ICU, his condition improved enough that he was moved into a regular ward. Through it all, Sinikka was able to visit her husband and support him in his recovery.
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That changed on November 11, 2020, when the number of active COVID-19 cases in the Thunder Bay region rose to 23, and the TBRHSC put in place “precautions to protect the patients,” including limiting visitation to “essential care partners” — which the hospital defines as people “that provide physical, psychological and/or emotional support, that is deemed important to the patient’s care team in collaboration with the patient.” From that day on, Sinikka was no longer able to visit Marvin.
“He really relied on me to be there, even if I was just there holding his hand or stroking his brow. He just needed me there,” says Sinikka. Marvin died on November 19, 2020.
Sinikka says the hospital staff provided excellent care, but she can only guess as to why she wasn’t allowed to visit him as he was dying. “I don’t think that they thought he was going to die, so I couldn’t go up because of that, you know?” says Sinikka. In a statement to TVO.org, a spokesperson for the TBRHSC says that “due to patient information privacy we cannot provide further details.” However, the spokesperson confirmed there was only one person hospitalized with COVID-19 at the TBRHSC between November 11 and November 19, 2020.
“It was horrendous. That last week was the worst week of my life, besides him dying,” says Sinikka. “That’s what keeps going through my mind, up until now. Every once in a while, you sort of forget it, but then it always comes back.”
Hospital visitor restrictions meant to limit the spread of COVID-19 have changed the way we experience some of life’s most significant moments — from a baby’s first breath to a loved one’s last — and researchers are urging hospitals to devise responsive, evidence-based visitation policies in order to limit the harm caused by unilaterally imposed visitor restrictions.
“Unfortunately, what we’re seeing during the pandemic is kind of an across-the-board
cancellation of family visitation,” says Kristen Jones-Bonofiglio, director of the Centre for Health Care Ethics at Lakehead University and co-author of a paper examining hospital visitation policies during the pandemic. “And there’s a lot of literature that’s been made available over the last, probably two decades, that shows it’s actually really valuable to have family there, not only for the patient … but for health-care providers.”
Visitors can support and advocate for patients, providing basic care and information in a way that benefits health-care providers, says Jones-Bonofiglio, adding that visitation is particularly valuable for certain patients, including young children, people in labour, and older adults with dementia: “Having that familiar person might be really critical to somebody being okay, to calm them down and to reassure them.”
While conducting research for their paper, Jones-Bonofiglio says, she and her co-authors “found incredible variability” among hospital visitation policies in North America. In some communities with few or no active COVID-19 cases, hospitals had strict visitor restrictions because they were “following a larger urban centre’s policies.” The researchers saw similar policies in communities that could be considered COVID-19 hot spots, where, Jones-Bonofiglio says, “you would expect very tight visitor restrictions.” However, she says, there was no “evidence-based rationale for why those restrictions were in place.”
It’s not sufficient for hospitals to say that such policies are in place “because we’re in the middle of a pandemic,” Jones-Bonofiglio says. “It’s important to look at what resources you have available. Certainly, if you don’t have the resources to support visitation, it makes sense, but then it’s important to communicate that to staff and family members. It’s also really important not to have that super-tight restriction in place for the duration of the pandemic.”
Last April, Adam Aelick, 22, wasn’t feeling well and decided to cancel what would have been his first public-speaking gig. Adam had planned to talk at a conference about his genetic condition, 22.q11.2 deletion syndrome (also known as DiGeorge syndrome or simply 22Q) — a disorder caused by a “glitch” or deletion of small portion of chromosome 22, which, for Adam, caused heart problems, learning difficulties, and vision issues, among other symptoms.
On April 16, 2020, about a week after Adam began feeling sick, he was rushed to Health Sciences North in Sudbury. Initially, his family couldn’t join him, but they were told he was doing well — the nurses said he was even joking around, his sister Miranda Aelick recalls. Suddenly, Adam went into cardiac arrest and had to be resuscitated; that’s when his family was invited to the hospital.
Adam’s family couldn’t go into his room, as he had symptoms of COVID-19 (though a test would later confirm he did not have the virus), but Adam’s mother, Rose Ducharme, says the nurses were very compassionate. “They were constantly asking if we needed anything. They put the phone to Adam’s ear so I could talk to him,” she says. “They would touch Adam and put their hand against the glass window so I could touch their hand, so that I could be connected with Adam.” A few hours later, Adam again went into cardiac arrest, but this time they were unable to resuscitate him.
“It is hell not to be able to be there and hold your son while he’s passing away,” says Ducharme. “The nurses were crying as much as I was at the end, because they understand. They wanted us to be able to be there with him, but because of the restrictions, they couldn’t permit it. So they did the best they could.”
Restrictive visitation policies take an emotional toll on frontline health-care workers “because they’re going to be seeing this over and over and over,” says Jones-Bonofiglio. It’s a situation that can lead to moral distress, an emotional state that arises when health-care providers know what to do — for example, allowing families to visit dying patients — but cannot do it. Unaddressed moral distress can lead to moral injury, a sort of internal conflict that can result in feelings of betrayal, guilt, shame, or a sense of loss of moral integrity. “Situations with moral injury drive people out of health care,” says Jones-Bonofiglio.
In Ontario, hospitals set their own visitation policies. In Thunder Bay, where COVID-19 prevalence is relatively low, patients at St. Joseph’s Care Group — an organization that provides hospice and long-term care, among other services —are allowed two essential visitors (though only one at a time), and pets can visit, too.
The current policy at Sunnybrook Health Sciences Centre aligns with that of other hospitals in the Toronto region, says Lisa Di Prospero, co-chair of Sunnybrook’s visitor task force: patients who were admitted on or before April 26, 2021, are not allowed visitors until they’ve been in hospital for 15 days — though there are exceptions to that rule, particularly for patients under 18 and those with cognitive impairments, says Di Prospero.
She and other clinicians on the task force “all feel it is difficult, because we understand how important it is to have family members here for our patients,” she says. “So we really try in all our decisions to balance the patient and family needs and ensure the safety of the patients, families, and staff.”
Last June, Emily Bongelli took her grandfather, Gordon MacNab, for his first cancer treatment at Sunnybrook. MacNab, an outdoorsy guy who loved spending time at his cottage in Haliburton, was also suffering from dementia, and by September he’d been admitted into palliative care at Lakeridge Health’s Bowmanville Hospital. When it became clear that MacNab would not be leaving the hospital, Bongelli says, her parents insisted they let his family come to say goodbye. “They were actually very flexible,” Bongelli says of the hospital. “We were very lucky, and thankful for that.”
When Bongelli visited her grandfather, she held his hand and let him know what their relationship means to her. “I just told him how much I loved him and how much he meant to me and made me who I am,” says Bongelli. “All the nature stuff, and animal-loving, all came from him. He always taught us to respect nature.”
When she was a child, Bongelli used to go on walks with her grandfather at his cottage. MacNab had a habit of picking up rocks. “Every time he picked up a rock, there would be a salamander,” says Bongelli. “We’d be like, ‘What? You’re magic!’” The weekend after her grandfather died, Bongelli and her cousins went to his cottage and did a walk in his honour. “We were picking up rocks and there were no salamanders, and we’re like, ‘How did he do this?’” she says.
When it comes to implementing visitor restrictions, Jones-Bonofiglio says, hospitals should consider the prevalence of COVID-19 in their community, as well as the hospital’s resources, including human resources and their supply of personal protective equipment.
It’s also important for hospitals to have a process in place that allows families to appeal a decision denying visitation. “I think it’s really important for family members to feel heard,” Jones-Bonofiglio says. “Even if an organization can’t facilitate [a visit], they at least deserve to know why they were told no.”
Even if a patient is COVID-19 positive, Jones-Bonofiglio says, “I don’t think that should automatically mean they absolutely can’t have any visitors.” In cases when full visitation is not permitted, she adds, hospitals should look at alternatives, such as visiting through a glass barrier or using technology to connect patients with their loved ones: “These are all moments that you can’t really get back after they happen.”
This is one in a series of stories about issues affecting northwestern Ontario. It's brought to you in partnership with Confederation College of Applied Arts and Technology. Views and opinions expressed in this article are not necessarily those of the college.
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