As my grandfather lay dying in a hospital bed three weeks ago, I experienced for the first time as a resident physician the impact of visitor restrictions from the other side of the bed.
Three weeks ago, my grandfather was admitted to the intensive care unit at a Greater Toronto Area hospital. He was suffering from complications from lupus, primarily a severe lung infection that was causing his other organs to shut down. We were told he had a few days to a week of life left at the most.
COVID-19 visitor restrictions presented a challenge. My family coordinated booking visitor shifts with the unit, rotating family members to ensure someone was at his bedside when he had moments of clarity during his terminal delirium and to provide comfort during his last days with us. When he took his last breaths, we were only allowed four out of our 10 family members in the room to say goodbye.
Visitor restrictions due to COVID-19 have been implemented widely across the health-care system and the community to help prevent transmission of COVID-19 in areas where patients are particularly vulnerable. While these policies have limited transmission of COVID-19 in health-care settings, these policies also have come with downsides that can negatively impact patient care and quality of life. Essential caregiver presence is associated with significant benefits to patient care, including improved safety, enhanced communication and improved outcomes. They’re also crucial players in the delivery of patient-centred care by assisting with feeding, mobility, hygiene, orientation, and emotional support.
As the pandemic lingers, more have begun to question how visitor restrictions can be adjusted to balance the infection risk associated with having family or essential caregivers in the hospital against the risk to specific patient populations and the resultant increase in workload to health-care providers. A study published in the Annals of Internal Medicine found that during the first wave of the COVID-19 pandemic, only 44 per cent of patients had a family member physically present in their room at the end-of-life compared to 87 per cent in pre-pandemic times).
During the first wave, only 44 per cent of patients had a family member in their room at the end-of-life.
The restrictions have also affected patients outside of hospitals. Roy Breton’s wife, Ellen Breton, has spent a number of years at a long-term care home in Toronto. She has severe dementia and requires around-the-clock care but also significantly benefits from having Roy visit, which he used to do daily before visitation restrictions prevented him from entering the building more than a few times per week.
“I try to see her as much as I can,” says Roy, “but it’s been harder during COVID because of the new visitor restrictions.”
During COVID-19, if one resident contracted COVID, long-term care homes were obliged under policy to prevent transmission by confining residents to their rooms for weeks until all were screened and the outbreak was considered over.
“Confining residents to their rooms – my wife hates it and unfortunately, she thinks that it’s my fault that she’s restrained from going outside,” says Roy. “Everyone there is agitated and has to be medically sedated to remain calm inside their rooms and isolated. I think the negative mental strain this has caused can be worse than even the possibility of getting COVID.”
Broad surveys administered by the Canadian Cancer Society revealed that restriction of caregivers from accompanying patients to appointments consistently has been the most reported disruption in care. From August 2021 to January 2022, 65 per cent of caregivers reported that they were unable to accompany their loved one to a cancer treatment or appointment due to COVID-19 restrictions. The disruptions were highest in Quebec (78 per cent) and Ontario (76 per cent).
“Family caregivers are the backbone of our health-care system,” says Diego Mena, Vice President of Strategic Mission Initiatives and Engagement at the Canadian Cancer Society, “They are an essential part of a health-care team. They provide transport-related assistance, help with personal finances, offer personal care, help with treatment and medication management, offer some medical care, as well as domestic help. Policies must be established to support the engagement of people with cancer and their caregivers in the care process.”
Policies on visitor restrictions have been developed, then constantly overturned, revised and re-evaluated with the discovery of new strains and the rise and fall of COVID waves. Susan Hosa, Medical Director of Infection Prevention and Control at the University Health Network, has played a key role in reviewing these policies in Toronto hospitals.
“We do not want blanket restrictions,” says Hosa emphatically. “Hospital directors, decision-makers and infection control associations are working to ensure that visitor policies for hospitals are created that are implemented universally, where hospitals and institutions are implementing uniform guidelines, and this requires balancing risk of COVID restrictions and exposures versus the absolutely critical need for people to have essential caregivers, family and other supports present for their care.”
I think the negative mental strain this has caused can be worse than even the possibility of getting COVID.
Hosa and other Infection Prevention and Control committees have worked tirelessly to develop recommendations since the peak of the pandemic when COVID cases flooded hospitals daily. Recommendations were designed to account for people with different needs, including those with disabilities, cognitive impairment, and at end-of-life, while also considering the risk of transmission, overall volume of COVID cases in hospital, outbreak numbers, the ability to physical distance and critical shortages of Personal Protective Equipment (PPE).
“We have collective working groups that do in-depth analysis on policies,” says Hosa. “This involves representation from hospital operation leads, palliative care physicians, infectious disease specialists and patients themselves from patient partners and patient advocacy teams in hospital.”
With the significant increase in vaccinated individuals and the decrease in severe COVID cases, patients, caregivers and staff alike are cautiously optimistic about the re-evaluation and lifting of visitor restrictions.
While infection control teams and policies have undoubtedly helped prevent COVID transmission in hospitals, as we move away from a crisis response to COVID-19, restrictions will be changed and adapted. I am hopeful that caregivers and families will be able to once again closely engage and support patients during their health-care journeys alongside their health-care teams.