Courtesy of The New York Times | By CATHERINE PORTER | Posted 05.25.2017 | Published 09.21.2017
Hi everyone: I urge you to click on the link to The New York Times site. There you can view and listen to the videos that accompany this article. I posted the videos as pictures as The New York Times has a lock on copying the videos. Enjoy, LCO
Tormented by an incurable disease, John Shields new that dying openly and without fear could be his legacy, if his doctor, friends and family helped him.
VICTORIA, British Columbia — Two days before he was scheduled to die, John Shields roused in his hospice bed with an unusual idea. He wanted to organize an Irish wake for himself. It would be old-fashioned with music and booze, except for one notable detail — he would be present.
The party should take up a big section of Swiss Chalet, a family-style chain restaurant on the road out of town. Mr. Shields wanted his last supper to be one he so often enjoyed on Friday nights when he was a young Catholic priest — rotisserie chicken legs with gravy.
Then, his family would take him home and he would die there in the morning, preferably in the garden. It was his favorite spot, rocky and wild. Flowering native shrubs pressed in from all sides and a stone Buddha and birdbath peeked out from among the ferns and boulders. Before he got sick, Mr. Shields liked to sit in his old Adirondack chair and watch the bald eagles train their juveniles to soar overhead. He meditated there twice a day, among the towering Douglas firs.
“Someone once asked me how did I get to become unique,” he said that afternoon in his hospice bed. “I recommend meditation as a starting place — bringing your consciousness to bear.”
Having control over the terms of his death made him feel empowered over the disease rather than crippled by it, a common response among Dr. Green’s patients. Mr. Shields believed that dying openly and without fear could be his most meaningful legacy — which was saying something. The man had packed five lifetimes of service into one: He had been a civil rights activist, a social worker for children, the head of British Columbia’s biggest union and, most recently, the savior of a floundering land trust that included 7,191 acres of protected wilderness and historic properties.
His newly developed plan for how he would spend his last moments, though, worried his wife, Robin June Hood. Her husband had not left his bed once since he arrived at the hospice on a stretcher, 17 days earlier. His 78-year-old body had thinned; his voice dimmed. He lasted only 15 minutes in conversation before his eyes fluttered closed. Just leaving the room would exhaust him. She knew he could not make it to the restaurant, and there was no way she could tend to his needs at home, even for one night — especially his last.
Happily, Dr. Green had become adept at brokering delicate family discussions over the past year. She had presided over 35 deaths since the law passed, each intimately different from the next. One man got dressed in his amateur clown costume, complete with wig and red nose, and died telling her jokes. He had insisted on being alone in the room with her, but most of her patients died surrounded by loved ones. Many were too sick to devise elaborate rituals, but others had chosen the location, attendees, readings and music as if planning a wedding. Dr. Green called them something she picked up at a conference on euthanasia in the Netherlands: “choreographed deaths.”
She arrived at Mr. Shields’s hospice room that day to finalize the plans. The couple held hands as she helped them stitch a compromise. On March 23, the last night of Mr. Shields’s life, they would host a party in the hospice solarium with Swiss Chalet takeout for all. The next morning, he would die in his hospice room. Then, his wife and stepdaughter would take his body home and lay it out in his beloved garden for two days.
The plan, Mr. Shields said that afternoon, was “absolutely terrific.”
One Man’s Cosmic Journey
A year and a half earlier, Mr. Shields was driving down a wooded provincial highway across the belly of Vancouver Island when he blacked out. His S.U.V. crossed the centerline, plunged into a ditch and hit a tree.
Ms. Hood, who had been sleeping in the back seat, was violently thrown. She snapped five ribs and ruptured her spleen. Mr. Shields broke his back in three places. When he came to, he thought he had been paralyzed.
The fact that he was not, and that they had not been killed or struck another car, seemed a sign to Mr. Shields. Then there was this: An off-duty firefighter or police officer (they cannot remember which) happened to be driving behind them and summoned rescue workers, who arrived within minutes. Even their little cairn terrier, Diego, was rushed to emergency surgery.
Mr. Shields believed every person played a part in the continuing evolution of the universe. Clearly, he thought, he had more to do.
But just a few months later, in the fall of 2015, a doctor summoned him to his office and broke the news. A biopsy of his heart, taken after the accident, revealed that Mr. Shields had a hereditary form of amyloidosis. The disease had caused his heart to stop temporarily — hence his blacking out behind the wheel — and was the source of the numbness and painful tingling in his fingers and feet that had plagued him for a couple of years.
The disease was unpredictable, but it would likely cause him to lose all feeling and basic use of his arms and legs before shutting down his heart, Mr. Shields recalled the doctor’s telling him.
Mr. Shields had seen a friend die from a painful and disabling disease. He was terrified of facing a similar fate. “One quality of life that’s important to me is my dignity — and sparing anxiety for my wife and daughter,” he said. Becoming debilitated and being tube-fed was unacceptable to him. “All of those painful and demeaning things,” he said, “I considered beyond the threshold of how I would like to live.”
If service was the biggest theme of Mr. Shields’s life, the other was freedom — intellectual, spiritual, personal. He was always growing and exploring. In the last few months of his life, he tried a psychedelic drug for the first time and enrolled in an advanced online course on “transcending transpersonal realms.”
Mr. Shields was the rare combination of introspective extrovert. He could be seen wearing a silly hat made from a napkin one night and hosting a spiritual circle for men on another.
He loved rituals, which began with the Catholic Masses of his childhood in New York City. He was the only child of a steamfitter and a teacher, both Irish and devout. Family lore had it that when Mr. Shields was a baby, his grandfather hoisted him up in one hand and proclaimed he would be America’s first pope.
At 17, he enrolled in seminary. By the time he was ordained years later, the Second Vatican Council had convened. Shaken at first by changes the council was recommending, Mr. Shields came to embrace them, especially the use of modern historical criticism in interpreting Scripture.
In his mind, this changed Christ’s message from one of sin’s redemption to pure love. But his was a minority view, and it set him on a radical path at odds with his bosses. He was transferred from his first parish, in Vancouver, and then barred from preaching and teaching at his second posting, in Austin, Tex., after he challenged the pope’s opposition to birth control.
After only four years, he walked away from the priesthood, forlorn and distressed. The decision cost him not only his faith, but also his purpose and livelihood.
But from that difficult time emerged two loves. One was Madeleine Longo, who had worked with him in both places and who soon became his wife. The second was the wild and rugged landscapes of British Columbia, Vancouver’s province.
In 1969, the couple moved here and Mr. Shields found a job as a social worker. His first clients were unwed pregnant women, many of whom wanted illegal abortions. He put aside any vestiges of Catholic doctrine after he heard their anguished stories. For Mr. Shields, nothing was black and white.
He eventually became a manager, but was not satisfied treating problems at what he called the “discharge end of the social injustice pipe.” As a seminary student, he was active in the civil rights movement and had met the Rev. Dr. Martin Luther King Jr.
He wanted transformational change.
Mr. Shields successfully ran for president of the British Columbia Government Employees’ Union — which over his 14-year tenure grew by more than 20,000 members to around 58,700. He was known as “the skipper” — a calm captain who was open-minded and unerringly ethical, but also tough. He was most proud of securing equal pay for women in the union.
While his post-church professional life surged with purpose, Mr. Shields’s search for existential and spiritual answers was slow and meandering, often veering to the fringe.
He studied Gestalt therapy and picked up dowsing, the art of divining energy with copper rods. Finally, a lecture by Brian Swimme, a professor at the California Institute of Integral Studies, changed Mr. Shields’s life. He became a spiritual cosmologist, believing that the universe was conscious and that everything was inextricably connected.
“We come out of the universe to play a role in the unfolding of the universe,” Mr. Shields wrote in his 2011 memoir, “The Priest Who Left His Religion in Pursuit of Cosmic Spirituality.” “This perspective riveted me. This is the opposite of meaningless. I come forth at this precise moment to contribute my unique gifts to the great unfolding.”
In 1999, when Ms. Longo became ill with lymphoma, Mr. Shields decided to step down from his union post and care for her full time.
He was still grieving from her death, in 2005, when he met Ms. Hood, an environmentalist with a doctorate in education who was 15 years his junior and had spent years working on human rights in Central America.
She moved into his daffodil-colored stucco house, at the base of a cliff. It seemed more a cabin in a national park than a home in an old and genteel part of Victoria locally referred to as “behind the tweed curtain.” Deer grazed on bushes nearby and raccoons wandered liberally, enticed by the bowls of food and water set out by Mr. Shields. Orcas could be seen in the ocean, just a block away, and beyond that the white-capped peaks of Washington State’s Olympic Peninsula.
Ms. Hood’s then-19-year-old daughter, Nikki Sanchez, joined them and developed a close bond with Mr. Shields. Later, he would refer to her simply as his daughter and write that her love was “one of the most delicious gifts of a generous universe.”
Ms. Hood warned him that marrying her also meant inheriting a tribe of female friends she called “the intertidals.” Over the years, many would wash up on their doorstep after a storm, and move in for weekends or longer.
One, an environmentalist and writer, Briony Penn, had persuaded Mr. Shields to come out of semiretirement and help steer The Land Conservancy, which was heavily in debt. He was driving home from a conservancy meeting the day he blacked out and crashed his car.
After the diagnosis, Mr. Shields retreated into his study and fell into the throes of grief. As someone who treasured independence, the concept of being trapped in his own body frightened him. He searched on the internet for what he called “life-ending cocktails.”
From Birth to Death: A Doctor’s Gift
Three walls of Stefanie Green’s office are collaged with the faces of hundreds of smiling, angelic-looking newborns that she delivered over her 22-year career.
Until three years ago, she specialized in maternity and newborn care with a side practice in circumcisions — which started not because of her Jewish upbringing but because few local doctors were willing to perform them.
To her, it was a matter of principle. “It’s about choice — the same as MAID,” said Dr. Green, a 48-year-old mother of two, referring to the medical assistance in dying law. “Give people good information and let them do what they think is best for their family.”
Dr. Green gives off the aura of a university volleyball team captain — warm, competent, no frills, no makeup, nothing hidden. Last year, she took bridge lessons with a group of octogenarians at the local seniors’ center and now plays weekly.
For family reasons, she took time off and decided she needed a better life-work balance than the erratic schedule of delivering babies allowed. A month before the new law came into effect, she traveled to the Netherlands for a conference on euthanasia.
“Birth and death, deliveries in and out — I find it very transferable,” she explained one morning as she walked her small white poodle, Benji, on a beach near her home. “Both are really intense and really important.”
Many of her colleagues on Vancouver Island agree.
Off the west coast of Canada, Vancouver Island has been ground zero for assisted suicide in the country. It was here that Sue Rodriguez, a 42-year-old suffering from amyotrophic lateral sclerosis, or A.L.S., began her battle to die with dignity in the 1990s, going all the way to the Supreme Court. “If I cannot give consent to my own death, whose body is this? Who owns my life?” she famously said.
The court sided against her in 1993, ruling that the state’s interest was protecting life’s sanctity. Less than five months later, Ms. Rodriguez died in the company of a friend, from what the police called a “doctor-assisted suicide” — although they never pressed charges. Seventeen years later, other patients and lawyers in British Columbia picked up Ms. Rodriguez’s case. This time, the Supreme Court struck down the criminal sanctionsagainst medical professionals who assist in suicide and perform euthanasia in prescribed circumstances.
Under the new regulations passed by the government, participants must be adults who are in an advanced state of a “grievous and irremediable medical condition.” Their suffering must be intolerable and their natural death “reasonably foreseeable” — meaning people with long-term disabilities are not eligible unless they are near death. Patients must also be deemed mentally capable of consenting to the procedure moments before it happens. This stipulation is among the most debated parts of the law since it automatically bars people with dementia, even if they give advance consent.
Unlike in American states where similar laws exist, the Canadian system puts doctors and nurse practitioners at its center. They must not only determine whether a patient is eligible, but also oversee administration of the lethal medication. Doctors are not legally bound to participate, but in most provinces are expected to refer patients to colleagues who do.
Many doctors have refused to take part, believing that the law goes against their Hippocratic oath. Christian doctors in Ontario are taking their professional college to court, arguing that the requirement to directly refer patients infringes on their religious freedoms. On the other side, the lawyers who won the Supreme Court case have filed suit on behalf of people suffering intolerably from illnesses that are not terminal. They think the law should be expanded.
The public backlash many doctors feared against the law never materialized. Still, most doctors across Canada who have chosen to participate have done so quietly, even asking patients to withhold their names from their obituaries.
The exception has been on Vancouver Island, where Dr. Green and many of her colleagues advertise the service and publish their email addresses and phone numbers online. They have formed a national organization on medically assisted suicide and are holding their first conference in June.
And residents here have embraced it like nowhere else. With a population of just 771,000, Vancouver Island is the country’s retirement community as well as a hotbed for alternative lifestyles. Of the 803 people across the country who chose medical deaths in the first six months since the law passed, 80 of them were from here.
Dr. Green and her colleagues have witnessed how the law is changing not only the method of dying, but also the rituals around it. Many patients are planning goodbye parties, requesting special last meals and choosing to die at home.
“You don’t judge a civilization by its riches, but by how it treats its vulnerable,” Dr. Green said. “I think this is a mark of our humanity.”
She’s never understood doctors who say offering lethal medicine goes against their training. “I think people go into medicine because they want to help people,” she said. “This is on the continuum of care of helping people.”
She and other doctors said that most of their patients suffer more from psychological than physical pain. Just being approved for a medical death can be therapeutic. For some, the knowledge that they can control their exit translates into more peaceful final days.
The first death Dr. Green oversaw remains her touchstone. The man was dying from liver failure and his family opened their home for friends and neighbors to drop in and say goodbye. When he died, they all held him, including Dr. Green.
“It was a beautiful event,” she said. “It felt really like we were giving him a gift. It felt so good.”
Last October, Dr. Green participated in a panel discussion about medical deaths in the little public recreation center near Mr. Shields’s home. Sitting in the audience that day was Ms. Hood.
‘I Don’t Want to Suffer Anymore’
By the time Dr. Green paid her first house call to the couple’s home three months later, Mr. Shields’s neuropathy had progressed so much that his feet were permanently numb and covered in sores. He wore leather gloves on his hands, which had also lost all feeling. His skin was distressingly itchy. He could no longer swallow dry food. He vomited regularly.
When he noticed his wife and daughter were shielding their torment about his declining health, he asked them to start a new tradition. Every Wednesday, they would light the dining room candles, put out the nicest hand-thrown pottery and silverware, and share their grief, anxiety and anger with him. They also began to discuss the plans for his death. The result, he said, was that they felt closer.
“What could be more meaningful than planning for the end of your life?” he said.
He focused his energy on a workshop his wife helped facilitate called “Living Well, Dying Well,” speaking openly about his pending death and making new, intimate friends. While many people approaching death become increasingly insular, Mr. Shields continued to expand his world.
Still, he had not set a death date. He expected to live through spring, and hoped to see summer blossoms emerge in his garden.
One night in February, less than two weeks after he was approved for assisted dying, Mr. Shields awoke in his favorite maroon chair in the living room in a delirious state. He had fallen asleep reading and missed a round of medication.
“He didn’t make any sense,” Ms. Hood said. “He was totally incoherent.”
A nurse from the Victoria Hospice was dispatched to the house in the middle of the night. She thought he had an infection and put an intravenous catheter into his arm so his wife could administer medications.
In the morning, it took three women — his wife, his stepdaughter and a friend — an hour to guide him a dozen paces to the washroom. One lifted each foot with her hands. They realized that he had been in much more pain than he let on and that they could no longer care for him at home.
Later that morning, he was settled into a room in Victoria’s only hospice, an Art Deco, cotton-candy pink building on the edge of a hospital. It opened in 1946 as a maternity ward and retains that ambience.
His family carted in pots of daffodils to scatter around his room, along with some of his favorite books and CDs. They loaded up the bar fridge with food and settled into the brown sofa chairs in the corner to wait and worry.
A testament to Mr. Shields’s wide legacy: A nurse on the floor had been one of his foster care cases from his time as a social worker, and a counselor at the hospice was one of his oldest friends who had worked with him back in 1971.
Three days later, Dr. Green came to check in on Mr. Shields and tell him she was going on vacation with her husband. That put the family in a difficult position. If Mr. Shields wanted to proceed with his death, he had two options: schedule it for the very next day or in two weeks, on March 24.
“Can you imagine?” said Ms. Hood, sitting on a couch in the hospice’s comfortable lounge. A half-finished puzzle had been left on a nearby table and a guitar hung on the wall for general use. Tears filled her blue eyes. “Your partner all of a sudden is going to die the next day. It’s bad enough he’s going to die in a few weeks. But tomorrow? That was too much.”
The scheduling was not the only agonizing part of the decision. She also worried about Mr. Shields’s mental capacity. He was not thinking clearly. That morning, he asked her if she had brought his sleeping bag. He was going on a voyage, he said.
She was not sure if his confusion stemmed from the disease’s progression or the cocktail of pain medication hospice doctors had put him on. Either way, she worried that his lucidity would slip further and that Dr. Green would not be able to perform the procedure.
“John is right smack in the middle of the issue he was worried about — his ability to give consent,” Ms. Hood said.
This is the fine edge patients must balance — stretching out the last moments of their lives before the option to control their deaths disappears. It is a bit like playing chicken.
Dr. Green has had to disqualify a number of patients who could no longer understand the gravity of the decision before them.
“It feels like there should be flexibility in the law, but right now there isn’t,” Dr. Green said. “Sometimes, it feels cruel.”