A most ‘spe­cial’ call­ing

Ac­cent: Death doulas strive to pro­vide sup­port and com­pan­ion­ship through ill­ness and end of life

The Sudbury Star - - FRONT PAGE - LAURA STRADIOTTO

Sun­day morn­ing in late Novem­ber a group of women gather around the din­ing room ta­ble of Joy Wirta’s home in Capreol.

Some of them are so­cial work­ers, oth­ers are vol­un­teers in pal­lia­tive care. One young mother of two is a new birth doula. De­spite dif­fer­ent back­grounds and ex­pe­ri­ences, these women share the same call­ing: they want to be­come death doulas.

“You are pi­o­neer­ing this in the North,” Wirta tells them.

Wirta is the owner of Drag­on­fly Ad­vi­sory Ser­vices, a small busi­ness that pro­vides sup­port and guid­ance to fam­i­lies af­ter the death of a loved one. Wirta is also a re­cently trained death doula. While birth doulas tra­di­tion­ally help women through the preg­nancy, birth and post-par­tum process, death doulas are striv­ing to pro­vide the same sup­port and com­pan­ion­ship through ill­ness and end of life.

“Be­ing a death doula can­di­date is more like a call­ing ver­sus a ca­reer change,” Wirta said af­ter­ward. “Any­one who has had the op­por­tu­nity to help some­one die that best death pos­si­ble will un­der­stand it is a hum­bling ex­pe­ri­ence and one that I am hon­oured to take part of. I can­not think of any­thing more re­ward­ing than be­ing there at some­one’s most vul­ner­a­ble hours. No one should have to die alone.”

Death doulas are non-med­i­cal pro­fes­sion­als and Wirta thinks they will help alleviate some of the pres­sures on the health care sys­tem, es­pe­cially the lack of per­sonal sup­port work­ers in the North. That’s why Wirta wants to bring a mo­bile death doula train­ing pro­gram to the re­gion, in as­so­ci­a­tion with the Home Hospice As­so­ci­a­tion, a char­ity or­ga­ni­za­tion that has of­fered the pro­gram since fall 2017. The women who have gath­ered at Wirta’s home want to learn more about the pro­gram (while some have al­ready en­rolled in the pro­gram of­fered in Toronto) and want to know where they might find work as a death doula.

“North­ern On­tario is ge­o­graph­i­cally dif­fer­ent, we are unique in our cul­tures and faith,” said Wirta. “Not only do we have a cri­sis in health­care, we have a need for many who do not have ac­cess to hospice care.” While Sud­bury has a “beau­ti­ful fa­cil­ity”, the Mai­son Mc­Cul­loch Hospice, pro­vid­ing the ser­vice of death doulas will only fur­ther en­hance what is of­fered, she said.

“Death doulas bring dy­ing back to its roots, a holis­tic ap­proach to dy­ing,” Wirta ex­plained. “Just be­cause some­one is dy­ing, doesn’t means they can’t be in control. They are the de­ci­sion mak­ers, and should have right to make de­ci­sions. They also have the right to be pain free, and also not to have to die alone. No mat­ter where their head lies. Death doulas also bring choice in a non-judge­men­tal en­vi­ron­ment.”

Drag­on­fly Ad­vi­sory Ser­vices ap­plied for a fed­eral grant to bring the train­ing pro­gram, en­ti­tled On the Road, to the North but re­gard­less of its out­come, Wirta said she will be work­ing with the Home Hospice As­so­ci­a­tion to see train­ing made avail­able in the re­gion.

While train­ing is of­fered by the Home Hospice As­so­ci­a­tion in south­ern On­tario, there’s a wait­ing list.

Ex­pe­ri­ences ‘so hon­ourable’

Sandi Emdin is aso­cial worker with 10 years of ex­pe­ri­ence in pal­lia­tive care as both a vol­un­teer and trainer. She is reg­is­tered to take the death doula train­ing pro­gram through the Home Hospice As­so­ci­a­tion in Toronto for March 1.

“I had such a pos­i­tive life trans­form­ing ex­pe­ri­ence with pal­lia­tive care,” she ex­plained the im­pact of her work. “It changed ev­ery­thing in my world. It changed me from be­ing a com­plainer and some­one who would tell you how much I had to do to­day, some­one who was over­whelmed, to some­one who is present. Those times of be­ing present ac­cu­mu­lated and trans­ferred to my per­sonal life. I be­came more present in my life as well. Ev­ery ex­pe­ri­ence I had was so hon­ourable. It’s a priv­i­lege to sit with some­one, a com­plete stranger, who has a lim­ited amount of time. And to be able to es­tab­lish trust and rap­port im­me­di­ately is a skill that I think was a gift or I de­vel­oped in that work.”

Whether she read to clients, took a leisurely stroll, or ac­com­pa­nied them to the bath­room, Emdin said the ex­pe­ri­ence in­spired her to be more mind­ful in her daily life. Sim­ply by chang­ing the words “I have to” to “I get to.”

“Ev­ery sin­gle time I left the pal­lia­tive care pa­tient, no mat­ter how I ar­rived, I went home singing: I’m alive and I get pick up my kids be­cause I have kids,” said Emdin. “I get to cut the grass – I’m not hooked up to any­thing. In­cre­men­tally, ev­ery­thing switched for me.”

‘He died with dig­nity’

Sophie Huneault will be join­ing Emdin for the death doula train­ing pro­gram in Toronto.

With ex­pe­ri­ence in so­cial work and geron­tol­ogy, Huneault is the com­mu­nity well­ness co­or­di­na­tor with the Metis Na­tion of On­tario. She and her hus­band Paul Gagnon are work­ing to open White Owl Res­i­dence, a group home in Han­mer to ser­vice peo­ple with Alzheimer’s dis­ease. Huneault said she was for­tu­nate to be with her fa­ther-in-law through­out his ill­ness. The ex­pe­ri­ence made her chal­lenge so­ci­etal norms when it comes to death.

“It re­ally opened my eyes to how we think about death,” she said. “My think­ing is dif­fer­ent from the Euro­pean ways of think­ing. When I was gifted with the op­por­tu­nity to care for my fa­ther-in-law, his wife and fam­ily, I saw how beau­ti­ful and peace­ful he was and how the tran­si­tion was eas­ier. He died with dig­nity, the way he wanted to.”

She wished other fam­i­lies could give their loved ones the same op­por­tu­nity. Then, some time later, she re­con­nected with Wirta, who shared news about her death doula train­ing.

“I didn’t even know about death doulas – I didn’t even know that that ex­isted,” said Huneault. But the ti­tle re­ally spoke to what Huneault wanted to do, al­though she en­vi­sioned a spe­cific fo­cus. Huneault would like to con­nect with Indige­nous fam­i­lies in her prac­tice as a death doula al­though she rec­og­nizes there are lim­i­ta­tions to what she can do.

“I can­not do the cer­e­monies, I am not qual­i­fied and would never be qual­i­fied be­cause that is a life­long jour­ney,” she said. “But I could def­i­nitely ed­u­cate, be a com­pan­ion and could guide fam­i­lies, af­ter be­ing in­vited by an el­der to fol­low.”

Huneault em­braces the teach­ings and be­lief that end of life is a “com­ing home.” She wants to be part of that cel­e­bra­tion and to even­tu­ally of­fer fu­neral ser­vices. Most im­por­tantly for Huneault, be­ing a death doula would mean be­ing able to pro­vide sup­port to all peo­ple re­gard­less of cul­ture or so­cio-eco­nomic back­ground.

“If I can­not ser­vice all walks of life, I am not in­ter­ested,” said Huneault. “I am tired of al­ways hear­ing if you don’t have so much money, you can­not have the ser­vice. Ev­ery­one de­serves to be loved, to be cared for, to be at­tended to. Money should not be an is­sue.”

Cur­rently there are two ways a fam­ily can ac­cess a death doula, said Wirta. If the client re­quires ser­vice and they are uti­liz­ing home hospice, then the costs are cov­ered by the char­ity, said Wirta. The client also can use the ser­vices on a fee bases if they should choose.

Still, Huneault said the new di­rec­tion feels right to her.

“From the time I took geron­tol­ogy and so­cial work 20 years ago, I am get­ting that same feel­ing, that this is the right thing for me. As I’m jour­ney­ing along with it, I might branch off to some­thing else. But this is where I am now.”

No fear of death

Ni­cole Brown has never feared death. She has come close to death twice; when she was born she was given her last rites, and as a child she had a near drown­ing ex­pe­ri­ence.

“I’ve al­ways felt like we are on bor­rowed time,” she said.

Brown has vol­un­teered in pal­lia­tive care since 2006, first with Warm­hearts Pal­lia­tive Care­givers and now with the Mai­son Mc­Cul­loch Hospice. She has walked with clients through the fi­nal stages of ill­ness, any­where from four hours to three years.

She was at Wirta’s home to learn more about the pro­gram.

“Ev­ery­one wants to be there when a baby is born, but no one wants to be there at the end,” said Brown.

In­fant loss doula

Sadly, statis­tics show that one out of four preg­nan­cies end in loss. Los­ing a baby in utero could leave a mother emo­tion­ally dev­asted, sim­i­lar to los­ing a close fam­ily mem­ber. Sophie Misouri un­der­stands this all too well.

As a re­cently trained birth doula spe­cial­iz­ing in fer­til­ity, birth and post-par­tum, she is in the early stages of set­ting up her prac­tice. Misouri is also in­ter­ested in be­com­ing a preg­nancy and in­fant loss doula. The Home Hospice As­so­ci­a­tion of­fers the only preg­nancy and in­fant loss doula train­ing in Canada and Wirta in­tends to de­velop the On the Road pro­gram to in­clude train­ing for both death doulas and preg­nancy and in­fant loss doulas.

“I had a trau­matic birth ex­pe­ri­ence with my first and I didn’t want to go through that again,” Misouri said about be­com­ing a birth doula. “I knew there was a bet­ter way and I was go­ing to find it.” She hired a birth doula when she got preg­nant again and real­ized it was a ca­reer path she wanted to pur­sue.

“I had a won­der­ful birth ex­pe­ri­ence with my sec­ond,” she said.

But be­tween the birth of her first and sec­ond baby, she had a mis­car­riage.

“There are a lot of feel­ings there; it was dev­as­tat­ing to me,” she said.

When she learned about the spe­cial­iza­tion in preg­nancy and in­fant loss, Misouri saw it as an op­por­tu­nity to broaden the scope of her prac­tice. Still she has in­se­cu­ri­ties; al­though she ex­pe­ri­enced a mis­car­riage, she re­al­izes it may not be the same as los­ing an in­fant. But she un­der­stands grief.

“My fa­ther killed my mom eight years ago and then killed him­self in prison,” she said. “I’ve dealt with a lot of grief in my life. I know grief. I feel that I can trans­late a lot of those feel­ings and un­der­stand­ing to some­one who has re­cently lost a baby.”

Hop­ing for fund­ing

While it will be months be­fore Wirta learns if the doula pro­gram will re­ceive fund­ing, she is al­ready mak­ing plans to bring the train­ing North. With ag­ing baby boomers and the vast choices now avail­able to Cana­di­ans when it comes to end of life, the tim­ing is right, said Wirta.

Death doulas’ scope of prac­tice be­gins from on­set of di­ag­no­sis un­til the end of life.

But most fam­i­lies reach out for end of life care and don’t re­al­ize that a death doula can start prior, said Wirta. She senses this may change as fam­i­lies learn more about the role of a death doula in their life. So what is the dif­fer­ence be­tween a pal­lia­tive care vol­un­teer and a death doula?

While a pal­lia­tive care vol­un­teer sits with the client, and acts as a com­pan­ion, a death doula is the go­b­e­tween the fam­ily and health care pro­fes­sion­als, un­der­stands med­i­ca­tions and choices and is there for all mem­bers of the fam­ily, said Wirta.

“The pur­pose of a death doula is not to call 911. It’s to un­der­stand what is hap­pen­ing in that death process, what is nor­mal. “

Death doulas have a team ap­proach and work with pal­lia­tive care vol­un­teers and health care pro­fes­sion­als. “We still need our vol­un­teers – they are an im­por­tant part,” said Wirta.

SUP­PLIED PHOTO

Sophie Huneault, Sandi Emdin, Bev Brisco, Joy Wirta, Ni­cole Brown and Sophie Mis­souri (front) want to be­come death doulas.

FILE PHOTO

Death doulas have a team ap­proach and work with pal­lia­tive care vol­un­teers and health care pro­fes­sion­als.

FILE PHOTO

Ev­ery­one wants to be there when a baby is born, but no one wants to be there at the end, says Ni­cole Brown, who wants to be­come a death doula.

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