Disability advocates call for plan to prevent ableism if health system becomes overwhelmed

Disability rights advocates are calling on the province to create and share protocols for worst-case scenario pandemic decision-making, to prevent discrimination in health-care decisions about who should get life-saving treatment.

"Hope is not a plan," said David Kron, spokesperson for Barrier-Free Manitoba, a group of disability rights organizations that penned an open letter to Manitoba Health Minister Cameron Friesen this week.

The group is urging the province to develop new critical care guidelines and triage protocols that will guide health-care workers' decisions on providing care when demand outweighs capacity during the COVID-19 pandemic.

"We wanted to have an open and transparent debate about the protocols, because we don't know what they are," said Kron, who is also executive director of the Cerebral Palsy Association of Manitoba, one of the signatories of the letter.

"We don't want it to be a crisis decision made at the bedsides."

The Nov. 20 open letter adds support to a call made in an earlier, internal report from Doctors Manitoba that said physicians don't know who to turn away if hospitals are full. The document was made public after being obtained by the Winnipeg Free Press.

"Ignoring their request for this support puts Manitoba's frontline healthcare workers in an ethically challenging position," Barrier-Free Manitoba wrote in its own open letter.

"Moreover, the absence of COVID-19 critical care guidelines and triage protocols leaves medical decision-making vulnerable to systemic discrimination — specifically an ableism bias in critical care decisions concerning persons with disabilities."

Right to transparency

Skyrocketing cases of COVID-19 in Manitoba and a rapidly growing burden on the health-care system have prompted apprehension among Manitobans with disabilities, says the letter, which was backed by 12 organizations in addition to Barrier-Free Manitoba.

They're calling on the province to develop policies that meet four criteria, laid out in the letter:

• State clearly that persons with disabilities are to be treated as equally valuable and worthy of care as others.
• Include the criteria for triage decisions and the reasoning behind them.
• Never equate disability status with health status.
• Are based on knowledge of a person's medical history, not on assumptions about their background health status or quality of life.

The letter also warns against the danger of including "predicted quality of life" to decide who should get access to care. Instead, they're urging the province to include a criteria for probable clinical outcomes — "the likelihood that treatment will save the life of a person who would not otherwise recover."

Kron said planning needs to be immediate and transparent to avoid discrimination based on the ableist belief that having a disability equates to being unhealthy.

"There are attitudinal barriers out there. I'm not naive enough to know that they're not there," he said. "We just want to make sure ... the protocols and the triage protocols do not include ableism."

The group says Manitobans have a right to transparency.

"The general public is entitled to know the basis on which life or death decisions in COVID-19 healthcare will be made," the letter says.

"Political inaction is not an option."

'God willing, we won't ever get there'

Lanette Siragusa, chief nursing officer for Shared Health, said Monday the province is doing everything it can to avoid forcing health-care providers to deny anyone care.

"We're not at the point where we are having those discussions and, God willing, we won't ever get there," Siragusa said at a Monday news conference.

"Our biggest challenges right now are what kind of services do we decrease in order to shift capacity to acute care and personal care homes."

The province has instead focused on pulling back elective surgeries, diagnostic tests and other health services to keep capacity for the most urgent cases, Siragusa said.

"We want to be able to rise to the occasion and provide the service that Manitobans need from us," she said.