domingo, 11 de junho de 2023

'A good death

 About the Author Jason Warick*

 

Saskatoon artist Jeanette Lodoen wanted Canadians to understand the realities of medically-assisted dying. She and her family granted CBC News unrestricted access to the weeks before, during and after her death.

A dozen kids and adults sit around the large dining room table. At its centre, a two-metre panel of maple and Baltic birch. It’s the lid for Jeanette Lodoen’s coffin.

One great-granddaughter picks up a crayon and draws a small blue flower on the lid. Her dad swirls a brush in a watercolour palette and paints a green and orange bird. Others fill the wooden surface with handprints or poetry.

At the head of the table, oxygen tank and walker at her side, Jeanette looks on and smiles.

“Just wonderful. Thank you all so much,” she tells them.

A procession of friends and family comes by the table to laugh and cry with her. After a few bites of fish and chips from her favourite restaurant, Jeanette is taken to bed just after 8 p.m.

The 87-year-old Saskatoon artist says she wants to be alert tomorrow — the day she’s scheduled her medically-assisted death.

“I’m ready. It’s time,” she says. “It’s become too much. I just can’t deal with all this anymore. I need to go home.”

Family decorates lid of coffin with paint.
The night before Jeanette's medically-assisted death, she asks her family to decorate the lid of her coffin. (Don Somers/CBC)

Jeanette recently granted CBC News weeks of unrestricted access to her most intimate family moments, her medical appointments and ultimately, her assisted death.

She said she was sharing her story because she wanted families, health professionals and lawmakers making decisions about medical assistance in dying (MAID) to see exactly what it’s like.

Growing numbers of Canadians are choosing MAID, particularly in Saskatchewan. With greater awareness and acceptance, and possible expansion of criteria to include mental illness, medical experts say that trend will continue.

“Some people think that they have to live until their illness takes them away. They have a right to that,” Jeanette said. “But sometimes I think people would want to go home. They aren’t aware a person can have control and dignity when they die, control over how they die.”

Why did Jeanette choose assisted death? How did it feel to know the exact moment she would die? How did she spend those last weeks, hours, minutes?

Formal interviews soon gave way to unstructured chats, with Jeanette often asking as many questions as she answered. As the day neared, and her remaining time and energy diminished, videographer Don Somers and I mainly stayed in the background, observing. With visitors unable to pretend they’d see her again, we witnessed one funny, sad, tender exchange after another.

Jeanette often told them she tried to live a good life. Now, she was seeking a good death.

Artist chose medically-assisted death and wanted Canadians to witness the entire processaskatoon artist Jeanette Lodoen was one of more than 10,000 Canadians a year now choosing medical-assisted dying. Lodoen believed that if families, health professionals and lawmakers are going to make good decisions, they need to see exactly what it’s like. That's why she allowed CBC News to witness her final weeks.

Phyllis and I had met at a coffee shop a few days earlier after being connected by a doctor who heard I was interested in profiling a MAID candidate. After a lengthy chat, Phyllis agreed to introduce me to her mother.

Jeanette looks directly into the camera as she wears oxygen. 

The next afternoon, Jeanette was feeling better. She welcomed us to her apartment. It was –30 C outside, but bright sunlight shone through her living room window. Rays fell on her paintings, sculptures, masks and other art covering every wall and shelf, including a three-metre-wide canvas depicting a Ukrainian cossack wedding party. Near the window, an old desktop computer displayed her latest Facebook conversation.

The 87-year-old says she has a wonderful family who supported her in her decision. (Don Somers/CBC)

Seated at the kitchen table beside her ever-present oxygen tank and walker, Jeanette apologized for delaying the meeting. She said her chest pain and fatigue had now subsided.

“You know, I’m just 87. I’m a spring chicken!” she joked.

“Maybe a fall chicken, Mom,” Phyllis added.

After a few minutes of explanation, Jeanette said we could tell her story and use her full name on one condition — no cameras. She didn’t like looking at photos or videos of herself.

Phyllis smiled and gently reminded her mom that she wouldn’t be around to see the story.

“Oh, that’s right!” Jeanette said with a laugh. She nodded to Don, and he turned on the camera.

During the conversation, Phyllis and Jeanette sorted through the contents of five shallow wooden boxes on the table: dried orange rinds, dragon fruit peels, mango pits and other scraps, adorned with beadwork, paint and poetry. They were part of Jeanette’s 1995 solo exhibit called Women & Aging.

“From the moment of birth to the moment of death, aging is inescapable,” read the exhibit notes. “In our society, older women are devalued through gender bias, ageism and consumerism. They are no longer youthful, so they are no longer useful.… This work is intended to be a celebration of these women.”

Jeanette said her family, which included several great-grandchildren, was her greatest pride. But her “second love” was art.

“I’m really proud. I was looking back and I realize that I’ve done a lot more than I thought I did,” she said, pausing to gather a breath. “I’ve never thought of that because, you know, your life is in pieces. Your life is always now, right?

“I used to think I was lazy because I hated housework. I hated it to the Nth degree. Even when I was young, my brother used to accuse me of being lazy. And so when I did all this [art] work, I realized I wasn’t lazy. I was working at something that I love, not at something I hated, you know?”

Jeanette's art station at her home.
Jeanette often painted scenes representing her Doukhobor culture. (Don Somers/CBC)

That love of art was sparked by her father, Samuel Postnikoff, as Jeanette grew up on the family farm just north of Saskatoon in the 1930s.

Her father wanted to take an art course, just like his uncle, Frederick Loveroff. Loveroff had left the farm at age 19 and studied in Toronto under Group of Seven impressionists George Agnew Reid, J.W. Beatty, and J.E.H. MacDonald. Loveroff’s work, mainly agricultural scenes and landscapes, is part of the National Gallery of Canada’s permanent collection.

Jeanette’s grandfather, struggling to feed his family during the Depression, called art school “frivolous” and forbade Samuel to pursue it.

“He was devastated, but learned to paint on his own. He would do drawings on the backs of fliers and give them to me,” she said. “When I was little, he called me Mouse. He was very loving. He was my inspiration.”

The family moved to Saskatoon when Jeanette was 12 years old. Samuel found work as a sign painter.

Phyllis refilled our cups with peppermint tea. Then the focus turned to Jeanette’s death.

Jeanette’s heart, lungs and kidneys were deteriorating. Painful osteoarthritis prevented her from lifting her arms to brush her teeth, cook or paint. Her hearing was failing, and she received regular eye injections to slow the advancing macular degeneration. It was becoming difficult to swallow round after round of pills to control her pain, blood pressure and other conditions.

“If she doesn’t move, she’s OK. She spends most of the time in bed,” Phyllis said.

Jeanette, who called Phyllis her “angel,” said the turning point came at the apartment last December. As Phyllis moved a brush through her mother’s dark brown hair that day, Jeanette told Phyllis she’d had “enough.” Phyllis knew what she meant.

“I thought, you know, I can’t do this anymore. It was too painful. Everything was hurting,” Jeanette said. “Phyllis supported me in making that decision that I have to go home.”

Phyllis is sitting in a chair, looking off camera.
Phyllis spent months taking her mother to appointments and caring for her before Jeanette chose a medically assisted death. (Chanss Lagaden/CBC)

The option of assisted death had already occurred to Phyllis. Jeanette’s sister received MAID a couple of years earlier. But Phyllis didn’t want her mother to feel like a burden, so she didn’t mention it.

“For months, it was all about keeping her alive, even though she was in pain. All we did was take pills and go to appointments. That’s what we did together,” Phyllis said.

“That day, we decided to do whatever was going to make Mom happy. So I said, ‘I’m not going to make you take your pills. I’m not gonna make you do all of these things. You tell me what you need now.’”

Jeanette, who had tears running down her cheek as Phyllis told the story, said she felt an immense “release” through her entire body after making the decision.

“I thought, thank you. Thank you. I’ve had enough. I’ve had a long life. I’m 87 years old. I’ve had a wonderful family who support me and I love dearly forever,” she said. “It was such a release to know that I didn’t have to suffer anymore, and that it was OK to go.”

Mother and daughter came up with a list of people and activities. Then they plotted it on a paper calendar with different coloured markers. The Feb. 10 square stood out. In red and blue marker were the words MOM’S DAY.

“I didn’t want any of the kids to have to think of it on their birthdays,” Jeanette said.

Jan. 30

As we waited for the doctor to arrive for another home visit, Jeanette looked over at Phyllis, then over at me. She began to giggle, a pair of dimples appearing on either side of her mischievous grin.

“Should I tell you about my first boyfriend? I was 13. He was 14,” she said.

“We were walking home from school and he would, you know, make remarks about me. Really sweet ones. And so he finally asked me to go out golfing. Can you imagine? I knew nothing about golfing, but he wanted to keep it, you know, proper.”

The boy arrived for their first date at the home of her grandparents, Doukhobor Russian immigrants who spoke little English.

“My grandmother answered the door. He introduced himself. She turns to me and says in her heavy accent, ‘Ahhh, he delicious!’ I was so embarrassed.”

As Jeanette finished telling the story, Dr. Rob Weiler knocked on the apartment door.

Weiler and another doctor with specialized training had already approved Jeanette’s MAID application. They’d questioned Jeanette about her health status and reasons for requesting assisted death.

On this day, Weiler had come to remind Jeanette she could change her mind at any time and to explain the details of the procedure.

“It will feel just like going into a restful sleep. Of course, with this, you don’t wake up,” Weiler said.

“So does my mouth open?” she asked.

“Whatever is normal when you drift off to sleep.”

“Ok. I don’t want to look, you know, gross.”

Jeanette told Weiler she wanted lots of flowers and intended to play music — one song written by a grandson, and maybe some Johnny Cash or Bette Midler.

She didn’t want to lie in bed. She would sit in an easy chair. She asked if early afternoon, maybe 1:30, would be convenient. She wanted to have brunch and say her final goodbyes.

Weiler smiled and nodded.

“Yes, these are all your choice. No one can make this decision but you,” he said.

“Yes, I know,” she replied. “There’s no quality of life, you know? I’ve lived a long life. This wonderful family loves me. And they understand. My body says no. So I need to go home.”

“I understand,” Weiler said. “I know you’ve spent a long time thinking about this.”

“Right. There’s no doubt.”

As Phyllis refilled the tea cups, the pair chatted about Jeanette’s art, life on the farm and the history of MAID.

“It didn’t start with us physicians. It was other women, three women who changed things,” Weiler said.

The first was amyotrophic lateral sclerosis (ALS) sufferer Sue Rodriguez. In 1993, the Supreme Court of Canada narrowly rejected her fight to legalize assisted death. Rodriguez sought and received an assisted death by an anonymous provider a year later. She sparked a national conversation on the issue.

More than 20 years later, the result was different for the two other women: Kay Carter, afflicted with degenerative spinal stenosis, and Gloria Taylor, who suffered from ALS. In 2015, the Supreme Court ruled unanimously in their favour, and assisted death was legalized the following year.

More than 10,000 Canadians now choose medically-assisted death each year. Its popularity is growing in every province and territory. That growth is most rapid in Saskatchewan, where case numbers rose to 243 last year, a 55 per cent increase.

Medical experts say these trends will likely continue as more people hear about the program and society’s views shift.

Numbers could also increase if the criteria continue to expand. Initially, only those whose natural death was “reasonably foreseeable” were eligible. A 2019 Quebec court ruling led to the inclusion of those with “grievous and irremedial” physical conditions that were not necessarily fatal.

A plan to offer MAID to those suffering exclusively from mental illness has been placed on hold until March of next year following vocal opposition. Meanwhile, some people are demanding the right to request MAID in advance, should dementia or other illness render them incapable of consent.

Opposition to MAID comes in many forms — religious, moral and medical. Some say it’s always wrong to intentionally end a human life. Others say medical science could improve pain management or find cures not currently available. Still others say MAID would not be as popular if more was done to support the elderly or ill.

According to Statistics Canada, the vast majority of recipients are older than 65. In 98 per cent of cases, death was “reasonably forseeable.” Cancer was the most frequently cited condition, followed by heart, lung and brain diseases. The most common reasons for applying are loss of ability to engage in meaningful activities or basic daily tasks, inadequate pain control and loss of dignity. Palliative care was available in 88 per cent of cases, and most did accept it before choosing MAID.

Weiler noted there are often different opinions among family members. That included Jeanette’s son-in-law, Terry Scaddan, who shared caregiving duties with his wife Phyllis.

“I have to admit, I was not in favour of the idea. But I never wanted to enforce my views, and wanted what was best for Mom,“Terry said. “If this is what she wants, I have to be supportive.”

Feb. 1

Jeanette sits with her grandson Jordan. (Don Somers/CBC)

Grandson Jordan mixed the plaster in a large plastic pail on Jeanette’s kitchen table. He poured it into two molds in the shape of her hands.

Jordan said Jeanette inspired him to become an artist, as she did with other relatives pursuing careers in painting, the film industry or music. Jordan wanted to do one last project with her, and planned to bring the hand sculpture back to his daughters in Ottawa.

Jeanette has her hands in plaster.
Jeanette enlists the help of her grandson to make plaster imprints of her hands. (Don Somers/CBC)

Jeanette said her art career didn’t blossom until later in life. She married at age 18 and soon had five children. But with her husband’s alcoholism worsening, the pair divorced. He moved out of province and died several years later after a car crash.

“That time was really difficult,” Phyllis said. “I can’t remember any other single parent in our neighbourhood. She lost all those friends. At least she had her sisters.”

Phyllis said this experience led her mom to open their home to others. Teenagers facing violence, pregnancy or poverty were welcome. Jeanette would host them for a night, a month or a few years.

“No matter how many kids we brought home, for lunch we would just cut it in half and cut it in half and cut it in half so everybody always had a bite to eat,” Phyllis said. “So many people, she made such a big difference in their lives.”

Jeanette said their home often seemed like Grand Central Station.

“There were always all these kids around, but I loved it because I knew they were safe,” she said.

Jeanette worked in a group home for “troubled” girls and took other jobs to support her family. When her five kids became adults, they encouraged her to pursue art full time.

She apprenticed and partnered with prominent Saskatchewan artists including Eli Bornstein and Bill Epp. Her paintings now hang in Toronto’s Shevchenko Gallery and elsewhere. She collaborated on the statue of First World War Lieutenant Harry Colebourn and Winnie the Pooh commissioned for Winnipeg’s Assiniboine Park Zoo, the bronze statues of immigrants outside Hamilton’s city hall and the downtown Saskatoon statue of Canada’s first Ukrainian Governor General, Ray Hnatyshyn.

Jeanette remembered Hnatyshyn and two plainclothes security officers walking into Epp’s bronze foundry just north of Saskatoon to inspect their progress.

“Why do you need to bring them along? Do they think I’m going to shoot you or something?”

The stern looks from the officers suggested they didn’t appreciate her humour.

A few years later, Jeanette joined two of her daughters at the University of Saskatchewan. In 1995, at age 60, she graduated with great distinction from the fine arts program.

Jordan works on a plaster hand. (Don Somers/CBC)

After 45 minutes had passed, Jordan opened the molds, scraping and chipping off excess material. A pair of plaster hands revealed themselves. Jeanette thanked him and said they were beautiful.

“But it is a little bit creepy,” she said with a laugh.

“Yep, it kind of looks like you’re reaching from beyond the grave, Grandma,” he said.

She drew a breath and replied, “Well, I will be.”

The finished plaster hands sit on a cabinet. (Don Somers/CBC)

Feb. 8

Two days before Jeanette’s assisted death, granddaughters Sarah and Brianna arrived from Los Angeles and Quebec.

Jeanette wanted them to make the family borscht one final time. Jordan was also there, chopping cabbage, potatoes, onions, garlic, dill and other ingredients. Notably absent were the beets, a staple of the Eastern European soup.

“That’s because us Doukhobors didn’t have much. We just added whatever came up in the garden. We call it Doukho-borscht,” Jeanette said.

As the soup simmered on the stove, Sarah hugged her grandmother.

“I am so happy for you, to be able to hold on tightly, but let go lightly, you know?” she said, laying her head on Jeanette’s shoulder. “Know that we love you so much.”

In the living room, Jordan and Brianna also hugged each other. Everyone in the apartment began to cry.

“I’ll send all of you love from up there,” Jeanette reassured them. “Not down there, up.”

Jeanette then turned to Don and me.

“I’ve been bragging about you guys. I hope all this will help people understand more. I’ve had a full life and I’m ready to go,” Jeanette said, her dimpled smirk appearing again. “I’m still glad I won’t have to see myself on TV or the internet or whatever.”

Feb. 9

Relatives picked up Jeanette and drove her several kilometres to Phyllis and Terry’s house. Jeanette had lived there with them several years ago, and the bungalow has far more room to host large gatherings.

Within an hour, 30 people were enjoying takeout fish and chips, sharing memories of horse-drawn sleigh rides on the farm or Jeanette’s travels to Kenya. Several neighbourhood kids she fostered, now in their 40s and 50s, dropped by to give her a hug and express their gratitude.

The table was cleared of dishes and replaced by the coffin lid. Sarah wrote a verse in purple marker and read it to Jeanette.

“Lay back, beloved one, into the timeless presence, from which shines stardust and storms, love and light.”

Looking on from the kitchen was Jeanette’s son-in-law, Terry. When Jeanette had said she didn’t want money spent on an expensive, impersonal coffin, Terry said he’d take care of it.

“I texted my friend and said, ‘This may seem like a strange idea, but what do you think about us building Mom a coffin?’ And he said, ‘You know, I don’t want you to take this the wrong way, but I think it would be a lot of fun,’” Terry said.

Terry and his Saturday morning coffee buddies spent a few weeks in the garage building it “cowboy style” — a tapered hexagon made of Baltic birch and maple with a linen lining and hemp rope handles. He then spent several days finding the perfect pillow — soft, frilly and bright purple.

Jeanette sits with her grandchildren Jordan Lodoen, Brianna Hamlin and Sarah Hamlin. (Don Somers/CBC)

Feb. 10

Late in the morning, Jeanette was carried from her upstairs bedroom to the dining room. She had initially planned to have only three or four people with her that day, but everyone from the previous evening returned.

Jeanette had a few bites of her requested meal, an Eastern European crepe called a blini, with crab and dill toppings. She had just one sip of her Kahlua liqueur with cream, saying she didn’t want anyone to have to carry her upstairs to the bathroom.

She was then moved into the living room easy chair, backlit by noonhour sunshine. The paintings from her apartment were now hanging there above the bookshelves and counters topped with red and white roses, mums, dahlias, daisies, hyacinths and birds of paradise. On the coffee table sat the photos and mementos to be placed with her in the coffin.

Thirty minutes later, Dr. Weiler arrived as scheduled, took off his winter coat, set down his bag and greeted Jeanette.

“You’re the only one who can tell me if today’s the day for sure,” Weiler said.

“Yes. I can’t do anything anymore. It’s time for me to go,” she replied.

“You understand that at anytime, [including] just before I give you the medication, you can change your mind?”

“I understand.”

Weiler asked everyone to leave the living room. He questioned Jeanette for another 10 minutes before she signed the final consent form. She pushed up the left sleeve of her sweatshirt and Weiler inserted the intravenous line. He assured her no medication will be administered until she’s ready.

A doctor inserts an IV into Jeanette's arm.
The doctor receives final consent and inserts an empty IV line. (Don Somers/CBC)

Everyone returned to say their goodbyes. Jeanette recorded messages to grandkids unable to make the trip. Jordan played a video made by his daughters back in Ottawa.

Terry walked in and held Jeanette’s hand.

“Thank you so much for building [the coffin]. It’s so beautiful,” she said.

“Thank you for your lovely daughter. She has saved my life,” he replied.

“And you, hers.”

“I’d like to think so.”

When it was his turn, a grandson put his head on Jeanette’s shoulder and smiled without speaking, tears rolling down his cheek.

Phyllis then called to Don and me in the dining room. Jeanette wanted to say goodbye to us, too.

After a moment with Don, Jeanette took both of my hands and asked if I was doing OK. She said she’d like us to stay, but would understand if we didn’t. I said we will stay, and thanked her for sharing her story.

On the stereo, they played Enya’s Orinoco Flow, followed by a song written by one of the grandsons.

In the kitchen, on a counter not covered by leftover crepes, stemware and plates, Weiler prepared the fatal drug cocktail. Following the guidelines of the Canadian Association of MAID Assessors and Providers, he filled separate syringes with sedative, anesthetic, a coma-inducing agent and a neuromuscular blocker to stop respiration.

Everyone crowded into the small living room. Most were crying. Jeanette’s requested final song, the Righteous Brothers’ You’ll Never Walk Alone, played in the background.

Weiler entered and asked Jeanette if she was ready. She said yes.

“I love you all so much and I will always be with you,” she said before closing her eyes and nodding.

Weiler, crouched at her side, emptied the first syringe into the IV line. With Phyllis holding one hand, daughter Sandra holding the other, Sarah behind the chair stroking her grandmother’s hair and Jordan gently massaging her feet, Jeanette’s body went limp. Weiler injected the remaining drugs. Minutes later, he declared her dead.

Everyone sat in silence, some with watery eyes, others smiling and looking out the window. Then Terry and others brought the coffin in through the back door and placed it in the centre of the living room.

They lifted her body and placed it gently inside, her head propped on the purple pillow. Sarah and others places photos and other mementoes beside her, covered her legs and torso with flowers and sealed the coffin with the multicoloured lid.

As scheduled, the funeral home worker was waiting outside. They placed the casket in the back of the hearse and watched it drive away.

Jeanette signs the final consent form for Dr. Rob Weiler. (Don Somers/CBC)

Feb. 15

As Lodoen family members drove and flew home to their lives across North America, Phyllis’s social media post about Jeanette garnered hundreds of responses and well-wishes from around the world.

Terry, who initially opposed assisted death, said this experience changed his mind.

“Seeing the relief Jeanette had with the end in sight, and participating in it, made me a bit of a convert,” Terry said as he sat in the living room across from Jeanette’s favourite chair. “It may not be for everybody, and I’m not trying to convince people one way or the other, but I think that you have to keep an open mind.”

Phyllis smiled and repeated Jeanette’s words: Everyone talks about living a good life, but people need to talk openly about ways to have a good death.

“All of the things we wanted to say were said, and were able to say goodbye in such an intimate, intimate way that I really don’t think that anybody has any regrets at all,” Phyllis said.

“It left all of us with a better understanding of what it is to die, to have agency and take control. It was a good death.”

Jeanette's family sits in a circle holding her ashes before spreading them.
Jeanette's family gathers at Petrofka, Sask., to spread her ashes. (Chanss Lagaden/CBC)

With the spring melt complete, Phyllis, Terry and others drove an hour north of Saskatoon to Jeanette’s “favourite place in the world” — a site near the family homestead.

In the shade of a tree overlooking the South Saskatchewan River, they dug a hole and placed Jeanette’s ashes inside.

“I believe there’s nothing up there, nothing after this, but love,” Jeanette had said during one of our kitchen table chats.

“And if there’s something different when I get there, I’ll deal with it.”

Painting of Jeanette's self-portrait.
Jeanette's self-portrait is one of her family's most cherished works. (Don Somers/CBC)
 
* Jason Warick is a reporter with CBC Saskatoon.
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 Fonte:  https://www.cbc.ca/newsinteractives/features/a-good-death-maid

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