Egan: The life and (assisted) death of Josephine Hopkins

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Josephine Hopkins chose the day and hour of her death with a kind of bloodless practicality.

It was to be the Monday of a long weekend — a “bank holiday,” she called it — so her grown children would be off work and easily available, and two o’clock just seemed a “sensible” hour, as though death, for all its fearful finality, needn’t be inconvenient, too.

“Existing rather than living is what I’m doing now and that’s what I don’t want to do.”

It is June 26, just after 10 a.m., and Hopkins is in the interior courtyard and garden at Extendicare Starwood nursing home, sitting in a wheelchair with a fleece over her shoulders on a sunny, rain-washed morning. She has pale blue eyes, strong-looking hands unadorned with rings.

“Thank you for coming in the morning,” she says in a lovely British accent. “My voice is better in the morning.”

Hopkins is 85 and battling a condition called cerebellar ataxia, a disorder that attacks the part of the brain that controls gait and muscle co-ordination and is sometimes loosely compared to ALS, or Lou Gehrig’s Disease. Since being diagnosed in 2015, she has stopped driving; she’s given up her condo and her cat. She’s lost her ability to walk and the use of one arm; she’s given up emailing due to her wonky fingers; she needs a sling to get in and out of bed; she has fallen often.

It’s an irreversible decline. With each move — from living independently in 2015 to a convalescent home, to a more intensive-care facility — she feels her world shrinking, to the point where she can’t turn over in bed, and can barely feed herself.

“My breathing is getting difficult. I can’t even sing anymore,” she said sadly.

At this point, Hopkins has 42 days to live, which she will spend without any apparent panic, as is her sturdy nature.

After travelling the world, a long marriage, three decades in the Yukon, she’s arrived at a place called acceptance.

“There is nothing more I want to do,” she said, when asked about final plans. “I’ve done everything.”

In exactly six weeks, she will end her life with the help of medical assistance.

Hopkins agreed to tell the Citizen her story, on condition it be published after her death. She did, indeed, want to deliver a message about controlling one’s own destiny, now legally entrenched in Canada.

“It was something I felt I had to do. I was the one living it.”

“She was courageous. She was adventurous. She never shied away from an expedition…Mum knew how to get back up after being knocked down — and how to ‘carry on.’”

— Mark Hopkins, Josephine’s eldest son, at his mother’s memorial service.

Hopkins was born on June 1, 1932, in a village in East Anglia called Worlingham. She was one of five siblings who grew up in a big house in a class-bound society. She lost her mother in 1941 and was largely raised by an older sister, a situation fraught with problems.

“I didn’t have a happy childhood,” she said, dismissing any further curiosity.

Her father, meanwhile, was pre-occupied with the Second World War and not much of a nurturing presence.

She attended a one-room schoolhouse that was heated with coal and served by an outhouse, then she studied in a convent. When she graduated, she went to nursing school at St. Bartholomew’s in London, where she spent four years getting RN credentials, followed by a stint in Edinburgh. She was now launched, not to be stopped.

Professionally, she saw death first-hand, once serving on a leukemia ward. She remembers a little girl dying, and seeing her body.

“I realized this isn’t her. I realized for the first time it was just a body. It didn’t mean anything. I’m not religious but I found myself thinking that the equivalent of her soul is gone, her spirit, the being that was her is not there,” she said.

It’s telling she would grasp for that memory now, as she faces her own end after 85 years, as though death need not be so scary — afterall, anyone can do it.

“People talk about death with great fear. I know it’s not frightening when you die, because you’re not there anymore.”

At age 23, she made a life-altering decision. Weary of post-war England, she boarded the Queen Mary for New York City, where she had a position at Mount Sinai Hospital but, family legend has it, only $5 in her pocket.

“I thought England was boring. In the 1950s it wasn’t much fun and New York sounded exciting. I guess you could say I was looking for adventure.”

During her year in the U.S., she crossed the country by road during a pivotal time in the 20th century.

She saw segregated washrooms in Nashville, Tenn., was handcuffed for trying to swim in Utah’s Great Salt Lake, learned about Mexican beer in San Francisco.

When the Mount Sinai job ended, she moved to Canada after finding work in the Montreal area and met her future husband, John, also a Brit, at a tennis club. Her world just kept expanding.

“Jo” as a young nurse in England.

They were married in 1958 and, within three years, had two boys. Family life would not be immune from calamity.

Josephine “Jo” in Tangier, 1961. . (Copy photo by Julie Oliver, Postmedia)

In 1961, their house burned to the ground. Then this, according to a three-page biography she penned: “1962 came along, and my darling daughter Amanda was born on October the 12th. On November 17th I picked her up, dead, from her crib. It was crib death.

“That I never got over, partly because I had been discouraged from grieving by John and his mother. It had a deep, personal, emotional effect on me, which I think I kept well hidden.”

The family moved a fair bit, living in Aylmer for a spell, returning to England for a couple of years, finally settling in the Yukon in 1980. “I stayed 29 1/2 years and I loved it.”

She liked the wilderness and the people.

Josephine Hopkins loved her time in Canada’s north. (Copy photo by Julie Oliver, Postmedia)

There was, absolutely, something rugged about the transplanted Hopkins, the English schoolgirl turned hiker on the Chilkoot Pass, the London-trained nurse now at ease in Canada’s frozen North, enamoured with dog-sled racing, taken to heart by her youngest son.

Travel and adventure were central themes in her life, desires she imparted to her children. “She more or less kicked me out of the house at 17 to travel around Europe on my own, and did the same, in a different house to my brother William,” said son Mark.

After her husband died in 1998, she grew wings again. She travelled to China and Tibet, the Yucatan, Turkey and Greece, while taking part in the Canada Senior Games took her across the country. She yearned, in other words, to be on the move. She had a satchel of travel stories, some quite hilarious.

“It was a pretty good life she had. There was no grass growing underneath her feet, that’s for sure,” said son Ed, 53, a well-known dogsled musher who still lives in the Yukon.

“No doubt her difficult childhood shaped who she was. She was fiercely protective of her children and would never hesitate to speak up on our behalf, whether it was appropriate or not. She would not tolerate disrespect or misbehaviour by her children or other people’s.”

—William Hopkins, eulogizing his mother.

Of Starwood’s 192 residents, roughly 85 per cent live with some form of dementia. Many residents use wheelchairs, many have advanced memory loss or illnesses that have left them severely diminished.

There are the “screamers and yellers” during meal time, or those who appear to be languishing in hallways.

It offered Hopkins the chance, daily, to see where thing were headed.

As we talk, a few steps away, a dishevelled-looking man with dementia was being led by the arm, walking in circles.

“You’ve got to go sometime,” she said that June day. “Do you want to go out when you have control of the situation, to a certain extent, or do you want to wait till you’re nothing?

“The thought of being around yelling and shouting; I don’t think I would want my children to see me in that situation.”

She returned to this theme during our second meeting, in July.

“Living in a nursing home for an extended period is not very nice, to put it mildly,” she told us. “They do their best but nobody is happy living there. It’s just miserable at night. I mean I can’t move anything. I can’t turn, I can’t move, I can’t do anything.”

So it was that, late in 2016, she made a momentous decision: She would pursue a medically assisted death, applying under Canada’s new federal law while she was still lucid and able to provide informed consent.

In the spring, she picked the August date, worried about her continual deterioration.

She told her family. Her only daughter, herself a mother, greeted the news with sobs. Who wouldn’t? Is “mother” not part of the bedrock of our lives?

“That day,” said the daughter, a public servant who asked not to be named, “when I was so shattered I was shaking, I said ‘Mom, God, tell me you love me’, and she did. And then I said ‘Tell me I’ll be fine’, and she said ‘Of course you’ll be fine. Your MY daughter.’”

She concluded the story this way: “At that moment, it was just what I needed to hear. It was wonderful.”

Jo loved her time in Canada’s North.

“She sold more raffle tickets than anyone,” son Ed said of his mother’s volunteer work as a fundraiser in Whitehorse. “What she did was, she went around to all the bars after eight o’clock in the Yukon. That was an adventure in itself.”

On July 26 came a mishap that, for the family, underlined the seriousness of her decline, perhaps the futility of her future.

On Wednesdays, Hopkins liked to take ParaTranspo to Carlingwood shopping centre, where she would meet a friend for lunch or have a solo outing by taking her electric wheelchair along back streets to the the paved NCC path along the Ottawa River. It was an act of independence, a journey she controlled on her own, much as it made the family nervous.

William Hopkins and his mother.

On her last trip, apparently to avoid a passing pedestrian, she wheeled too closely to the sidewalk’s edge and flipped over on the road, breaking a collarbone and leaving a bump on her head. A Good Samaritan, the family learned, held her hand while help arrived to take her to hospital.

“My mother,” William, 56, told family and friends, relating the mishap, “was fiercely independent.”

And how.

“She knew she did not want to live the rest of her life as a complete invalid in bed.”

—William, on Aug. 12, as black clouds massed overhead.

So came the day, Aug. 7. She only wanted her children in the room.

It was a tiny space, shared with another resident. Over her bed were photos of the seven grandchildren, life’s other possessions taken flight. When the physician arrived, Hopkins — who liked being called “Jo” — was outside in the courtyard with family. He asked if she was ready. “Oh, I’m ready,” her children heard her say.

Word had spread around Starwood, which is tucked in behind the Home Depot off Baseline Road. In her nine months there, staff had come to know her, some taking a great shine to her because she was cognitively so strong, doing her best to advocate for other residents.

Things were delayed a little because of all the farewells and tears, so many that staff were given a time limit. It began just after 2 p.m. with an injection. It was over in a handful of minutes.

“Things couldn’t have gone better,” said William later. “It was a smooth, peaceful process. My mother was calm. She was just very peaceful.”

As William spoke at the memorial service in the Pinecrest Cemetery chapel five days later, thunder rumbled outside and a tremendous torrent of rain began to fall, as though nature offering a backdrop to her life’s ferocity. Her ashes sat in a floral urn, before a plain wooden cross and a bouquet of white lilies and roses.

She had chosen the four pieces of music, including Bridge Over Troubled Water and England’s unofficial national hymn, Jerusalem.

“Of course I’m frightened,” she told us the last time we met. “I’m scared. I think I can’t believe it’s going to happen.”

But she clung to something an old army officer had told her about death, which she repeated both times we met, perhaps only to make us feel better. We were never sure.

“Jo, it’s a great adventure” — her final one, begun at the moment of her choosing, just as she boarded the Queen Mary alone, to cross a giant sea at age 23, to be embraced by worlds unknown.

Assisted death remains fraught for the professionals

The experience of Josephine Hopkins with medical assistance in dying was, in many ways, not typical of this revolutionary practice in Canadian medicine.

It occurred outside a hospital, for one thing. According to Ontario figures,since the federal law came into effect in June 2016, 55 per cent of assisted deaths were in hospitals. Only six per cent were residents in long-term care, such as Extendicare Starwood, where Hopkins was the first resident to die with medical assistance.

In greater Ottawa (the Champlain Local Health Integration Network), there were between 61 and 78 cases to the end of June, with 46 of those in The Ottawa Hospital.

Hopkins, who died on Aug. 7 at the age of 85, did not have a significant problem finding a physician to perform the service, though there are only four medical providers registered with the Champlain LHIN.

Nor was there an issue with her eligibility, though this can be a sticking point.

According to the law, a person must have a “grievous and irremediable medical condition,” which it proceeds to define in four bullet points, the most contentious being: “Be at a point where your natural death has become reasonably foreseeable.”

A person need not have a terminal condition but must “experience unbearable physical or mental suffering from your illness … that cannot be relieved under conditions that you consider acceptable.”

Hopkins ended up being referred to Dr. Paul Irwin, who assessed her independently in the fall of 2016, saw her again in the spring and agreed to perform the procedure on her chosen day. (The law requires two written opinions of eligibility and the physician or nurse practitioners must be “independent” of each other.)

“There’s no question,” the condition of cerebellar ataxia would have eventually killed her, he said, adding he was struck at how much she declined in the months he knew her. As for the requirement for “unbearable physical or mental suffering,” he said it depends on your understanding of “suffering,” which involves more than just measuring aches and pain.

He’s performed three medically assisted deaths and consulted on about 10 cases. He was asked about the push-pull for doctors, who are professionally dedicated to helping people stay healthy.

“I thought about doing (medically assisted deaths) after the Supreme Court declared it as a patient human right,” said Dr. Irwin. “One of the few remaining dignities at the end of life is some degree of control,” he added. “Giving patients control with the best insight to their options seemed logical to me.”

He, too, pointed to an evolution in his thinking.

“I would personally prefer a palliated death over (medically assisted death) at this point in my life, but as my impermanence becomes more inevitable, I might change my perspective.”

Broadly speaking, there are serious growing pains with medical assistance in dying. Some faith-based hospitals, for instance, are refusing to perform them, despite playing a central role in palliative care, like Ottawa’s Bruyère hospital.

Many physicians are not interested in being providers or even doing legally required referrals, saying it is a breach of conscience or even a violation of their constitutional rights. (The matter is so divisive, it has landed in court.) As a further irritant, some physicians believe the compensation is out-of-line with all the paperwork and personal care involved.

“At the end of the day, we are talking about some of the most physically compromised people in our province who cannot pick a phone, who cannot navigate on a website and may not have friends or family to advocate for them,” says Shanaaz Gokool, the CEO of the not-for-profit group Dying with Dignity Canada.

“If they can’t get referred, this is a real barrier.”

William Hopkins and his mother, Jo. (Julie Oliver, Postmedia)

Other medical practitioners, meanwhile, are worried about the vagueness of wording in the act and whether they are exposing themselves to possible criminal prosecution.

Gokool also objects to the idea that seriously ill people, maybe living in remote areas, would be forced to uproot from a publicly funded facility to have an assisted death miles away in unfamiliar surroundings.

“They have a duty to the community they’re supposed to serve.”

Extendicare has an in-house policy on assisted dying. In an email response, administrator Sue MacGregor said the “overriding determinate” is the need for the resident to be “completely competent” at the time of the request and remain that way until the procedure occurs.

She briefly described parts of Jo Hopkins’s final day, providing a glimpse of how difficult this was for some staff, given they work in a caring profession and are dedicated to the wellbeing of residents.

Hopkins was insightful enough to know this would not be easy for them.

“On my last meeting with Jo, she expressed concern for a staff member who was on holidays and what he would feel like when he came back. She also asked the RN to reassign her primary PSW’s workload for the morning so that she could spend time with her and help comfort her.”

There was, too, a discussion of the agenda for her final day, her last meal, what message should be delivered to staff and when.

“Jo’s last morning was spent educating and comforting staff, participating in activities with her family and private moments with each one, her favourite meal and a minute each with a long line of staff,” she wrote.

“Then the circle closed to Jo, her family and the doctor.As challenging as this was for everyone involved, we at Extendicare Starwood are so pleased that we were able to help Jo with her last wish.”

Egan: I wanted her to live. Jo Hopkins was made of braver stuff

It was an honour to be asked to tell the life story of Josephine “Jo” Hopkins, who, with eyes wide open, bravely wrote her own ending.

What I didn’t anticipate, was its power to invade. The more I came to know Hopkins, the more I wanted her to live, not volunteer to die. Must it end this way?

I saw my own mother pass on Oct. 6, holding her hand as she fought for her last breath. We swabbed Dad’s dry mouth with bits of water on his death bed in 2012. In between, after full, vibrant lives, my in-laws passed within seven weeks of each other, knocking away another part of our foundation.

Of course the end is a hard thing to suffer. This natural desire for longevity — and to cling to loved ones — is no doubt an important part of the debate over medically assisted death, probably why it took so long to become legal in this country. Life is good, death is bad — what could be more fundamental?

Think of it: Are not our daily habits — food, exercise, risk-avoidance, rest, health care — all tied to the self-evident idea that it is best to live as well, but also as long, as possible?

So the Hopkins family teaches us something.

Hopkins agreed to tell the Citizen her story, on condition it be published after her death. She met with us twice, for a total of about three hours, accompanied by her son, William, one of four children.

We found her delightful. Photographer Julie Oliver and I were struck by how lucid and clear-headed she was, how sometimes comical, how courageous, how engaged, how oddly pain-free she appeared to be, nothing like a woman preparing to die. Honestly, it left us troubled, maybe like the dilemma hitting kitchen tables across the country.

Josephine Hopkins, pictured here with one of her three sons, William Hopkins, who has accepted his mother’s decision. “To do otherwise, would be selfish,” he says. (Julie Oliver, Postmedia)

William, an insurance investigator, and his wife Emily, could not have been more open and helpful to the Citizen.

He supports his mother’s decision to seek a physician to assist with her death and believes we need to spread awareness about this option for the terminally ill. Indeed, it was front and centre in Jo’s published death notice.

“It was her decision and I respect that,” he said one day in July, after pushing his mother’s wheelchair across a city park.

“Quality of life is more important that quantity. To see someone you obviously love and care about in a deteriorating, unfortunate, sad situation that is only going to get worse,” he argued, “until she is helpless lying in a bed, that’s not the life I want for her.

“I hope I have the guts to do the same.”

Jo’s daughter wrestled with the question. In the months leading to the chosen date of Aug. 7, she said she queried her mother about whether things should be delayed. Her mother’s mind, after all, was still sharp and she could still read and attend family functions.

Look at Stephen Hawking, the renowned but disabled physicist, she remembers saying. Was he not still contributing — leading a valuable life — though in a diminished physical state?

But her mother could not be persuaded. “She just said no.”

They spoke of this again about a week before her death, the daughter said. Why not delay till the fall, for instance, enjoy the rest of the summer?

“I would go tomorrow if I could,” her daughter recalled her mother’s answer. ”It was a feeling of being in control that she hadn’t had for a long time. She was taking charge.”

And, in the end, there is the heart of it, perhaps: an individual’s ability to take control of the course of a fatal disease that has bulldozed your life. You win, in the end, by calling the final shot.

Knowing the date of one’s death crystallizes things. William told the mourners it gave the family time to go over family history — the good, bad and funny — and say important things that had gone unspoken.

“Most importantly,” he said. “I had the opportunity to tell her what a great mother she had been and how much I really appreciated how hard she had worked for us. Up until then, I had never done so.”

Her grandson Jack, 20, a journalism student, said knowing the date of death was “mind-blowing in a way” but he supported his grandmother’s decision.

“People tend to think that the scariest thing you can think of is your impending death. But this shifted my thinking. My own death is not the scariest thing because I know it will happen.

“But rather, how I will die? That, potentially, is the scariest thing.”

On Aug. 7, a Monday, I was cutting the grass at the cottage when I stopped to look at my watch: 2:45 in the afternoon. My new pal, Jo, would be gone by now, surely. And she was.

I’ve thought of Jo and my mother together and they merge in this vein: When you get old and sick, the medical establishment does not do everything in its power to keep you alive. We only think so. They tried the best antibiotics on Mom’s pneumonia, the result of serious heart disease, but the drugs failed. There would be no ICU or life support. She did not want that. On her final day, I think she arrived at acceptance.

They made her “comfortable” and she slipped away. Was this not, in a way, a physician-assisted death? So maybe these are not opposite ways of dying, after all, maybe just different shades of the same thing. Like driving a bus or being a passenger — both going to the same place.

Josephine Hopkins was too head-strong in life to let a little thing like death get in the way — which for me, and maybe many others, is a powerful, illuminating way of thinking about the arrow of our lives.

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