How nec­es­sary is se­crecy in as­sisted death?

Physi­cians join pri­vacy com­mis­sioner’s pleas for trans­parency about hos­pi­tals

The Hamilton Spectator - - CANADA & WORLD - VIC­TO­RIA GIB­SON

There are more peo­ple in on the se­cret than you’d imag­ine.

The scene is set in a hospi­tal, some­where in On­tario. A phar­macy tech­ni­cian care­fully mea­sures out the med­i­ca­tion. An or­derly whisks it down the hall. A trans­la­tor may be sought, and a physi­cian ar­rives at the pa­tient’s room.

Legally, any one of them can refuse to par­tic­i­pate in the physi­cianas­sisted death that’s about to take place, rec­og­nized for a year now as a per­son’s le­gal right in Canada.

But out­side the med­i­cal fa­cil­ity, no one has to know what’s hap­pen­ing — and that’s sound­ing off alarms for On­tario’s most se­nior pri­vacy watch­dog.

In his an­nual re­port last week, pri­vacy com­mis­sioner Brian Beamish took aim at the Med­i­cal As­sis­tance in Dy­ing Statute Law Amend­ment Act, or Bill 84, which be­came law in On­tario last month.

The act, in part, is a green light for se­crecy. Any in­for­ma­tion that could iden­tify hos­pi­tals, long-term care homes or hos­pices that of­fer med­i­cally-as­sisted death is ex­empt from free­dom of in­for­ma­tion laws.

“The gov­ern­ment views pro­tect­ing fa­cil­i­ties as a log­i­cal and jus­ti­fi­able ex­ten­sion of pro­tect­ing clin­i­cians,” health min­istry spokesper­son David Jensen wrote in an email to the Toronto Star. There’s noth­ing in Bill 84 to ex­plic­itly pre­vent a fa­cil­ity from “proac­tively re­leas­ing their poli­cies,” he added.

“The min­istry is not con­sid­er­ing any changes at this point.”

To Beamish, that de­ci­sion veers alarm­ingly off-path from trans­parency and ac­count­abil­ity. Be­fore the bill be­came law, he recommended amend­ments that kept the names of physi­cians anony­mous, but the names of fa­cil­i­ties pub­lic.

“In­for­ma­tion should be pub­lic un­less there’s a re­ally good rea­son why it shouldn’t be,” Beamish said.

In this case there was no ev­i­dence pre­sented by leg­is­la­tors to sug­gest any rea­son why hos­pi­tals and care fa­cil­i­ties should be ex­empt from dis­clos­ing their prac­tices.

The same con­cern was pre­sented by Hamil­ton Health Sciences ethi­cist An­drea Frolic at a com­mit­tee meet­ing about the bill in March. Frolic praised the protection of doc­tors, but ques­tioned why pub­licly-funded fa­cil­i­ties could draw a dark cur­tain over their prac­tices.

“In­for­ma­tion-shar­ing with the pub­lic is es­sen­tial to pa­tients’ in­formed de­ci­sion-mak­ing,” she told the room, rec­om­mend­ing that fa­cil­i­ties dis­close whether they grant as­sisted-death re­quests.

But when the bill passed, so, too, did the in­sti­tu­tional pro­tec­tions.

Dr. Ger­ald Ashe, a fam­ily physi­cian in Brockville, is on­side with Beamish’s plea. Over the past year, he’s openly helped ter­mi­nal pa­tients end their lives by achiev­ing what he calls “a good death.”

“I’ll be hon­est with you, I don’t agree that pub­licly-funded in­sti­tu­tions should have the right not to of­fer it. But this is so much be­yond that,” he said.

Though he un­der­stands that in­di­vid­ual physi­cians may find com­fort in anonymity, he says he’s faced zero crit­i­cism for his in­volve­ment.

“I don’t think there’s any dan­ger to physi­cians,” he said. “In­di­vid­u­als who are par­tic­i­pat­ing and not putting their name out there are just kind of find­ing their way.”

To him, an in­sti­tu­tion doesn’t need the same level of protection.

In Toronto, the Univer­sity Health Net­work is try­ing to set a stan­dard for trans­parency — whether or not the pro­vin­cial gov­ern­ment re­quires it — by pub­licly declar­ing its will­ing­ness to per­form as­sisted deaths.

Dr. Made­line Li, a physi­cian with the net­work, had al­ready be­gun writ­ing the frame­work for the hos­pi­tals within the net­work — Toronto Gen­eral, Toronto Western, Princess Mar­garet, Toronto Re­hab and the Mich­ener In­sti­tute — be­fore fed­eral leg­is­la­tion passed to al­low as­sisted deaths.

“The time for de­bate is over. This is a pa­tient’s right. And as an in­sti­tu­tion, we’ve de­cided to pro­vide it,” Li told the Star.

Even if a fa­cil­ity elects not to pro­vide as­sisted death, she said, it’s im­por­tant to make that clear for pa­tients.

“Other in­sti­tu­tions aren’t so much not be­ing trans­par­ent,” she said. “I think it’s more that peo­ple are just un­pre­pared.”

Un­like Ashe, health-care work­ers within the Univer­sity Health Net­work have seen back­lash. Dr. James Dow­nar, in par­tic­u­lar, faced crit­i­cism af­ter speak­ing out about as­sisted death.

“He was wor­ried about emails within our fire­wall that might be tapped,” Li said.

A pal­lia­tive care nurse was ap­proached and asked, “How could you do this?”

Li her­self has faced ques­tions about how she could par­tic­i­pate in the process. But, she said, form­ing an open and com­pre­hen­sive pol­icy makes an­swer­ing such ques­tions much eas­ier.

“I have no dif­fi­culty de­fend­ing our po­si­tion,” she said. “And that’s part of what plays into be­ing trans­par­ent. There’s no se­crets. There’s no shame.”

VINCE TALOTTA, TORONTO STAR

In­for­ma­tion about which hos­pi­tals and fa­cil­i­ties of­fer as­sisted death should be pub­lic, un­less there’s a re­ally good rea­son why it shouldn’t be, says pri­vacy com­mis­sioner Brian Beamish.

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