Disability advocates say the lonely death of a non-verbal B.C. woman is far from an isolated case in Canada — and underscores the need for a clear policy on who, exactly, is an essential hospital visitor during the novel coronavirus pandemic.
Ariis Knight had cerebral palsy and communicated with her family and support workers through her eyes and facial expressions. She was admitted to Peace Arch Hospital in White Rock on April 15 with symptoms of congestion, fever and vomiting, but did not have COVID-19.
Her support staff were not permitted access due to restrictions put in place during the pandemic. Not long after being admitted, Knight was put on end-of-life care, and died days later. She was 40 years old.
Longtime disability advocate Al Etmanski, who is also the co-chair of the federal government’s COVID-19 Disability Advisory Group, says Knight’s story isn’t unique.
“I’m hearing stories from families in Prince Edward Island all the way across the country,” he said, adding hundreds of patients have likely been affected by policies that don’t designate family members or support staff as an essential part of a care team.
Knight’s family is calling for an investigation into Fraser Health, who told Global News its medical staff determined Knight did not need extra help with communication.
“Essential visitors includes anyone who is considered paramount to a patient’s well-being. In the event that communication with a patient cannot be facilitated, acute care staff would connect with family to access additional support for the patient,” said the health authority in a statement Friday.
“In this case, medical staff determined that additional support for communication was not required.”
Knight’s support staff at Semiahmoo House Society — who spent two years learning how to communicate with her — say confusion about B.C.’s rules on who qualifies as an essential visitor amid the COVID-19 crisis has led to an inconsistent approach, denying vulnerable patients across the province access to their support system.
Under normal circumstances, support staff would have accompanied clients in hospital around the clock, the society told Global News.
A look at each province’s restrictions on hospital visitors found few mentions of people with disabilities, or any patient who is unable to speak or otherwise clearly communicate decisions for themselves.
The few health authorities that do appear to make exceptions in those cases use language that could still be interpreted in different ways.
Nova Scotia Health, for example, says “consideration will be given” to “one support person/substitute decision maker as required for patients needing assistance,” including “but not limited to cancer care, some emergency, outpatient or critical care situations, discharge planning.”
Other health authorities, like Saskatchewan and Niagara in Ontario, say exceptions will be made for “compassionate” reasons, with specific mention of “special care homes.”
But Etmanski says the vast majority of people with disabilities in Canada don’t live in congregate, long-term care homes. Instead, they live with their families or even on their own, and are visited by support staff depending on their needs.
Etmanski says the wide disparities in language across the country — or even within provinces that have multiple health authorities — are proof that a unified policy is needed to protect people with disabilities.
“Let’s make it clear, readable and understandable,” he said. “Let’s make it available to every hospital, and let’s follow it up with some basic training and orientation.”
Asked about the policy Thursday, B.C.’s provincial health officer Dr. Bonnie Henry said her “expectation” is that accommodations are being made.
“While I expect long-term care homes and acute care hospitals to make reasonable exceptions to visitor policies to support people with disabilities, I also trust the most responsible clinicians to make the decision about when exceptions are clinically necessary given each individual circumstance,” Dr. Henry added in a subsequent statement.
Etmanski says creating unambiguous language on access to support workers would remove the need for such decision-making and could save lives, and prevent a story like Knight’s from being repeated.
“Together, we can make something happen for your own son and daughter, and ensure that no one with a disability ever has to die alone, as happened with Ariis,” he said.
—With files from Kristen Robinson and John Hua
© 2020 Global News, a division of Corus Entertainment Inc.