Ad­vo­cates de­mand re­lease of triage pro­to­col

Draft ver­sion crit­i­cized for dis­crim­i­nat­ing against peo­ple with dis­abil­i­ties

Toronto Star - - CANADA - BRENDAN KENNEDY SO­CIAL JUSTICE REPORTER

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.

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