24 | ed­i­tor’s let­ter

Toronto Life - - Contents - —Sarah Ful­ford Email: ed­i­tor@toron­to­life.com Twit­ter: @sarah_ ful­ford

My sis­ter-in-law, San­dra, is a modern-day saint. She doesn’t think of her­self that way, but I’m in awe of the work she does. San­dra is a pal­lia­tive care nurse at the Kens­ing­ton Hospice, a 10-bed fa­cil­ity in a for­mer chapel on Ma­jor Street that is the gold stan­dard for end-of-life care. Years ago, when I first spoke with her about her job, I said some­thing dumb like, “If you’re do­ing pal­lia­tive care, you prob­a­bly don’t have much time to bond with your pa­tients.” She po­litely cor­rected me and said, “Oh no, we bond with all of them.”

Peo­ple move into the Kens­ing­ton Hospice when they have less than three months to live. Since the place opened in 2011, more than 500 peo­ple have died there. Hospice nurses like San­dra don’t just help res­i­dents man­age their pain (though they do a lot of that). They also of­fer pa­tients and their fam­i­lies com­fort and a place to die with dig­nity. The wait list far ex­ceeds ca­pac­ity.

Last June, San­dra was on ma­ter­nity leave when the govern­ment passed Bill C-14, le­gal­iz­ing med­i­cal as­sis­tance in dy­ing—or MAID, as it’s come to be known. I saw her soon af­ter the bill passed, and we talked about the im­pli­ca­tions for her job. The World Health Or­ga­ni­za­tion guide­lines say hospice care­givers should never has­ten or pro­long a pa­tient’s death. San­dra didn’t quite know what to ex­pect when she re­turned to work. She just knew things were about to change.

Turns out, no one in the Cana­dian med­i­cal com­mu­nity knew ex­actly what med­i­cal as­sis­tance in dy­ing would be like. As Nicholas Hune-Brown out­lines in his fas­ci­nat­ing story “How to End a Life” (page 62), doc­tors were largely left on their own to im­ple­ment and some­times in­ter­pret the law. It’s been a com­pli­cated, messy process.

There were huge lo­gis­ti­cal hur­dles. Doc­tors who were will­ing to help their pa­tients die had to fig­ure out how to do it. Med­i­cal school taught them to save lives, not end them. And there’s no man­ual. Many found the ex­pe­ri­ence of tak­ing a life more emo­tion­ally tax­ing than they’d ex­pected. Some of them, af­ter per­form­ing

the deed a few times, with­drew their names from the re­fer­ral list of par­tic­i­pat­ing physi­cians. Other doc­tors de­clined to par­tic­i­pate from the out­set and are now chal­leng­ing the pol­icy that forces them to re­fer their pa­tients to doc­tors on the list.

Over­whelm­ingly, the Cana­dian pub­lic sup­ports the new law. Since it was in­tro­duced last June, 1,300 peo­ple in Canada have died with med­i­cal as­sis­tance, and many more have ap­plied but been turned down. For most peo­ple, the ques­tion on the ta­ble is not whether we made the right choice with Bill C-14, but whether we should ex­pand the law. Should we al­low for ad­vance di­rec­tives in the case of Alzheimer’s pa­tients? Should the law in­clude peo­ple who suf­fer from se­vere de­pres­sion?

As ethi­cists, ac­tivists and law­mak­ers de­bate th­ese ques­tions, front line med­i­cal pro­fes­sion­als—like my sis­ter-in-law, and like the doc­tors in Hune-Brown’s story—are re­spon­si­ble for the in­tri­ca­cies of each case. Th­ese days, at the Kens­ing­ton Hospice, when a res­i­dent re­quests a has­tened death, a team from the Univer­sity Health Net­work comes in to de­ter­mine if the case meets the cri­te­ria. Staff mem­bers are free to de­cline in­volve­ment, and some­times they do. Hospice care has al­ways sought to re­spect a per­son’s right to make their own choices. Now, thanks to Bill C-14, pa­tients can truly de­cide their fate.

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