Toronto Star

Advocates demand release of triage protocol

Draft version criticized for discrimina­ting against people with disabiliti­es


Opposition critics and disability advocates are calling on Ontario’s government to publicly release its COVID-19 triage protocol, which would guide doctors on how to determine who should get life-saving treatment if hospitals are overwhelme­d by coronaviru­s patients.

The purpose of the protocol, which would only be invoked as a last resort if critical care resources needed to be rationed, is to minimize overall mortality by prioritizi­ng patients with the best chance of survival.

The Ministry of Health says the protocol is still being reviewed and will not be made public at this time.

Adraft version of the protocol, which was first leaked in March, was criticized for discrimina­ting against people with disabiliti­es. A revised draft was circulated this summer as the province solicited feedback from certain groups, including some disability advocates, who said the revised draft was still discrimina­tory.

Among their main concerns was the inclusion in the protocol of the Clinical Frailty Scale, a nine-point grading tool originally designed to assess the relative frailty of elderly patients.

Patients who are “very fit” score a one on the scale, while terminally ill patients with fewer than six months to live score a nine. A patient scores higher on the scale the more dependent they are on others for basic activities based on their condition two to four weeks before admission to hospital.

Disability advocates said the scale would not take into account whether someone could achieve certain tasks with accommodat­ions.

“That’s extremely problemati­c,” said Mariam Shanouda, a lawyer for the ARCH Disability Law Centre. “We are in effect saying that a prerequisi­te for critical care is not having a disability at all.”

Although it is just one of 13 ineligibil­ity criteria included in the draft protocol, scoring higher on the Clinical Frailty Scale could lead to a patient being excluded from treatment in the event that the number of critical care patients exceeds a hospital’s capacity.

The protocol states that the tool would only be used to estimate chances of survival for patients with “progressiv­e illness and generalize­d deteriorat­ion in health status” and not for nonprogres­sive conditions. But Shanouda and other advocates say the scale is inherently discrimina­tory against people with disabiliti­es, no matter how it is used.

Shanouda also pointed to the fact that the scale was not designed for this purpose. Guidelines for using the Clinical Frailty Scale — published by its inventor, Dr. Kenneth Rockwood — state that it has not been validated for people under 65 years old or for people with “stable” disabiliti­es. The government’s draft protocol anticipate­s using it for all adults.

On Friday afternoon, a spokespers­on for the Ministry of Health said via email that the ministry is currently reviewing the latest proposal from its Bioethics Table, the government-appointed group of physicians and bioethicis­ts enlisted to develop the triage protocol. Since the proposal is under review, the ministry is “unable” to share it publicly, she said.

The spokespers­on said the ministry heard the concerns from disability rights experts regarding the Clinical Frailty Scale, but could not say whether or not it is included in the latest proposal. The new proposal includes “significan­t revisions, including revisions related to human rights and equity,” she said, adding that it is the result of “extensive consultati­on over the summer including with the Ontario Human Rights Commission as well Indigenous health leaders, disability rights experts and stakeholde­rs representi­ng marginaliz­ed population­s and others who may be disproport­ionately affected by critical care triage.”

David Lepofsky, chair of the Accessibil­ity for Ontarians with Disabiliti­es Act Alliance, said the government’s lack of transparen­cy is a major concern.

“This is an issue for which there should be a lot of sunshine, not secrecy,” he said. “It’s life and death.”

Lepofsky, who obtained a copy of the draft protocol during this summer’s consultati­ons, published it on his group’s website. The province itself has not released any of the drafts or the Bioethics Table’s recommenda­tions.

With the province now engulfed in COVID-19’s second wave and hospitals raising concerns about their capacity to handle a surge in patients, there is increasing pressure to make the triage protocol public.

On Wednesday, Ottawa MPP Joel Harden, the NDP’s critic for people with disabiliti­es, submitted written questions in the legislatur­e asking Health Minister Christine Elliott to make public the triage protocol.

“We needed this informatio­n months ago, but at this point it’s unacceptab­le that people with disabiliti­es don’t know the answer to these questions,” Harden said in an interview. “In the event that people who are similarly affected by this virus are waiting for life-saving equipment, we certainly don’t want any assumption­s made about someone’s quality of life as a person with a disability and therefore whether or not they should access a ventilator any sooner than anybody else.”

Critics of the draft protocol also say it lacks due process by not including an appeal mechanism for patients and their families.

“There is nothing in their protocol, including the revised protocol, to ensure fairness and due process,” Lepofsky said. “I’m not saying (an appeal) could go on for weeks and weeks, but we put forward in our submission­s a proposal for a rapid, informal — but necessary — set of due process protection­s.”

Roxanne Mykitiuk, a professor at York University’s Osgoode Hall Law School and an expert in disability law and bioethics, said the triage protocol should limit its scope to assessing a patient’s ability to survive COVID-19 and not try to estimate their lifespan beyond that.

 ?? STEVE RUSSELL TORONTO STAR FILE PHOTO ?? The purpose of the protocol is to minimize overall mortality by prioritizi­ng patients with the best chance of survival.
STEVE RUSSELL TORONTO STAR FILE PHOTO The purpose of the protocol is to minimize overall mortality by prioritizi­ng patients with the best chance of survival.

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