by Jennifer Zelmer and Lisa Poole
There have been two overlapping tragedies that have befallen long-term care homes in Canada during the COVID-19 pandemic.
First, the unimaginable death toll itself from COVID-19. Long-term care and retirement home residents accounted for eight in 10 COVID-19 related deaths in Canada as of October 2020 — and they continue to bear the brunt of the pandemic.
Second, blanket visitor restrictions, which were designed to prevent the transmission of the virus, led to significant unintended distress for many residents, staff, families and friends. Essential care partners – which may include family or friends – were often not permitted on site when residents needed them the most.
Today, some essential care partners may still be denied entry, even as other long-term care facilities begin to loosen restrictions. But recent experience has highlighted that essential care partners are not just visitors – they never were. They are critical members of the care team and their inclusion in long-term care settings is vital to the well-being of residents and staff. It’s time for safe re-entry.
What’s an essential care partner?
Essential care partners are people who provide physical, psychological and emotional support, as deemed important by the long-term care resident. This can include support in decision making, care coordination, and continuity of care (for example, support for minor medical procedures, feeding, ambulation, cognitive stimulation, patient hygiene, medication adherence).
Essential care partners can include family members or close friends and are identified by the resident or substitute decision maker. It is estimated that caregivers in Canada contribute up to $24 billion annually in unpaid care to hospital patients, residents in long-term care, home care and other settings.
Essential care partners offer comfort, compassion and joy to residents, they combat loneliness and can be the eyes, ears and voice of some of the most medically vulnerable residents.
There is limited evidence about essential care partners, when properly supported, transmitting COVID-19 in long-term care homes, but we do know that resident isolation can result in increased depression and anxiety and an overall decline in mental health. Residents living with dementia may also show an increase in symptoms.
There is clear evidence that the presence of essential care partners benefits patient safety, patient experience, patient outcomes and patient care.
The absence of essential care partners to support and assist in resident care has also contributed to staff stress and burnout. In some cases, it has been reported that staff cannot consistently provide the level of person-centred care necessary for resident well-being in the absence of essential care partners. This has led to moral distress amongst staff.
Safely welcoming essential care partners back into long-term care facilities is important across the country. They can be trained to use personal protective equipment (PPE), educated in infection prevention and control, and vaccinated. And they should be provided the appropriate tools and resources for re-entry in ways that recognize and support the important roles they play in improving quality of life.
That’s why we created a resource at Healthcare Excellence Canada to help essential care partners safely re-enter long-term care homes during COVID-19. The resource was co-created by essential care partners, for essential care partners. It provides practical information so essential care partners can navigate the current state of long-term care during the pandemic.
And it’s why we are working with homes and policy-makers on pragmatic approaches to re-integrate, welcome and engage essential care partners as part of care teams, during COVID-19 and beyond – from setting mutual expectations and education to COVID-19 screening protocols and caregiver identification.
These resources have been shared widely with long-term care homes, caregiver associations and healthcare organizations with the hope that they will engage with essential care partners and work together to allow their safe re-entry into long-term care. It’s time.
Jennifer Zelmer is President and CEO of Healthcare Excellence Canada, a new organization that brings together the Canadian Foundation for Healthcare Improvement and the Canadian Patient Safety Institute.
Lisa Poole, an essential care partner, is the Co-Chair of Dementia Advocacy Canada, a member of Dementia Network Calgary’s Strategic Council, AGE-WELL’s Older Adult and Caregiver Advisory Committee and Imagine Citizens Healthy Living and Aging Working Group
by Jennifer Zelmer and Lisa Poole