Dying on Lynda’s terms – The Boston Globe

A man emerged from the farmhouse and placed a seat cushion on the frozen ground for her bare, swollen feet and helped her into a wheelchair. Paul took the handles of the chair and gently rolled her toward the farmhouse, the place she had carefully selected to end her life.

She would have preferred to die at her home of more than 20 years in Bridgeport, surrounded by the memories she forged with her husband, her two children, and two grandchildren. Lynda had lingered there, in her house near the ocean, reluctant to leave, even as her condition rapidly deteriorated. But her most urgent wish, the one she had argued and fought for, was to decide for herself when and how she died.

She believed it is a right anyone with a terminal illness should have, akin in importance to a woman’s right to choose whether to end a pregnancy. But medical aid in dying is illegal in her state, as it is in Massachusetts and all but 10 states across the country. In the three years since doctors diagnosed her with terminal ovarian cancer, she had waged a campaign to call public attention to the issue and excoriate policy makers she saw as squeamish about death.

She gave countless interviews and, hoping her story would change policy in Connecticut and elsewhere, allowed a documentary film crew and two Boston Globe journalists to chronicle the last months of her life. She was the face behind a 2022 lawsuit arguing that a Vermont law allowing medical aid in dying only for state residents violated the US Constitution. She prevailed, and the state last spring granted her permission to die there legally.

Two months later, lawmakers went even further, extending the right to all terminally ill patients who wished to end life on their own terms. The change made Vermont the only state besides Oregon to allow medical aid in dying for nonresidents. It was celebrated by proponents as a landmark victory, one that might even persuade other states to shift.

But as the Bluesteins arrived at the farmhouse, a new worry surfaced. Lynda was so weak that she sank deeply in the wheelchair as her husband backed the chair up a ramp to the porch and into the house.

To carry through with her plan, she had to be physically able and mentally competent to take the fatal dose of medication herself, according to Vermont’s law. She needed to be able to drink a cocktail of medications and hold it down long enough for it to work. Lynda was sick now, throwing up constantly, and it was unclear whether she could take the final steps of her journey.

Paul and the man who had come from the house to help him, a hospice specialist named Bill Kilgour, gave her morphine and helped her into a bed, where she soon fell into a deep slumber.

It was dusk. Gray light shown softly in the windows. Paul slept on a couch at the foot of his wife’s bed. Lynda was scheduled to give herself the fatal medication the next morning. Kilgour, who was there to assist in the final hours and moments, sat in the next room.

“I don’t think this is going to happen,” he said, shaking his head. “I hope I’m wrong.”

Lynda Shannon Bluestein and her husband supported the concept of medical aid in dying long before cancer struck her. They attended a Unitarian church, and, unlike many religions that oppose the concept, the Unitarians were a driving force to pass a bill in Oregon, the first state to legalize medical aid in dying in 1997.

Indeed, Lynda had been advocating for causes that bucked convention most of her life, a fact that may have grown out of the independent streak that made her question most everything around her. During her childhood years on a Texas cattle ranch in the empty rangeland south of San Antonio, she couldn’t accept the prevailing fundamentalist Christian beliefs that her mother held.

She discovered in herself a passion for social activism and an impulse to right things she believed to be wrong. After her family moved from rural Texas to the sprawling city of Anaheim near Los Angeles, she went to college, volunteered to work with poor people in Appalachia, and as a nurse dove into a movement in California advocating that women have more control over the deliveries of their babies. She endured physical and verbal abuse while escorting women seeking abortions at clinics stalked by hostile opponents of abortion. Years later, she got a vanity license plate: ACTVST.

Paul Bluestein was an obstetrics and gynecological doctor in Orange County. When Lynda first met him, she immediately began lobbying him to start allowing fathers into the delivery rooms where their children were born — a radical notion in those days. “She was a force of nature,” Paul recalled of that meeting. He yielded to her demand, and his practice became the first in Orange County to do so.

Lynda and Paul became a couple and married in 1982. And when Paul got a job in New York in 1991, they moved to Connecticut, bringing with them Jacob and Aimee, Lynda’s then young children from a previous marriage. As soon as she arrived in Connecticut, Lynda took up gun control as a cause and cofounded a group that successfully lobbied for an assault-rifle ban in the state in 1993.

For some three decades, a bill to legalize medical aid in dying in Connecticut languished in committee year after year, never emerging for a vote. It infuriated Paul, who vehemently believed that terminal patients should have control over their own destinies. His beliefs ran counter to the stances of many physicians organizations at the time. Ten years ago, he volunteered to testify on behalf of a bill to legalize medical aid in dying.

Lynda felt equal passion, but hers was fueled by the searing experience of her mother’s death in 1994. In the sparsely populated part of Texas where Lynda first lived, people died in their homes, not hospitals, she said, and she didn’t like the idea of anyone having to die in a hospital. And then she learned that her mother was dying in one.

She rushed to her mother’s side and was horrified by what she found. Her mother, riddled with cancer, had kept her terminal illness a secret until she was on her death bed, so delirious with pain that she had to be heavily medicated.

“By the time I got there, she was so far gone she was unable to talk,” Lynda said. “We were unable to have the conversations we needed to have. Why put it off? Waiting for what?”

It so horrified her that Lynda resolved in that moment she would not die like her mother.

“Unfortunately,” she said, “when it came to cancer, I had my mother’s DNA.”

Cancer first struck in 2018, when Lynda was diagnosed with breast cancer. Then, the following year, while she was still undergoing treatment, came another diagnosis, this time melanoma. She endured three surgeries in 2019.

When the doctors told her she was cancer-free, she triumphantly declared to Paul, “I’m done. We’re gonna live again.”

They loved music, having sung in their church choir for decades, and they embarked on a tour of destinations across the country to take in musical shows. They went to New Orleans, Nashville, Memphis, and Charlotte.

But then, in March 2021, calamity struck. Lynda went to see her doctor. Her gut had been bothering her. She underwent an MRI. When the results came back, Lynda’s doctor, a close friend and colleague of Paul’s, called their home and Paul answered the phone. The news was shattering.

“It’s not your gut,” Paul told Lynda. “It’s your ovaries.”

The cancer was advanced. It had metastasized. The diagnosis was terminal.

“We stood there in the bedroom for I don’t know how long, holding onto each other, crying, sobbing,” Lynda recalled. “The picture in my mind was of a clock, ticking.”

She started chemo in April 2021. She also started thinking about how she would die.

The seed of an idea had already been planted, by a woman she had met two years earlier in an exercise class for cancer patients. At the time, Lynda was being treated for breast cancer and melanoma and her prognosis was good. The woman, Cathey April, had terminal lung cancer. The two clicked.

“We talked for hours,” Lynda recalled.

April told Lynda she planned to move to Vermont in order to take advantage of the state’s medical aid in dying law.

That meant taking up residence there for at least six months before ending her life. So, with her illness worsening, she found an apartment in a small town in Vermont’s Northeast Kingdom.

April succeeded in establishing residence and finding a doctor to help her proceed under Vermont’s law. When she decided she had suffered enough, she moved into the hospice home here that Bill Kilgour runs and, a week later, on Feb. 3, 2022, with her husband, son and daughter by her side, contacted Lynda in Connecticut, asking her to light a candle at 10 a.m., the time she would take the fatal dose.

“I’m taking flight,” April told Lynda.

Now with her own fatal diagnosis, Lynda wanted to follow the same path. But she chafed at the idea of having to move to Vermont to make it happen.

Luckily for Lynda, Compassion & Choices, an advocacy group that champions the rights of terminally ill people, shared her frustration over the residency requirement. In his lobbying for changing the law in Connecticut, Paul had become friendly with the staff at Compassion & Choices, including president and CEO Kim Callinan. After Lynda’s terminal diagnosis, Paul called Callinan for advice.

Callinan called Lynda, asking if she’d be a plaintiff in a lawsuit challenging Vermont’s residency requirement.

“I said yes, immediately,” Lynda recalled.

Callinan told Lynda there was another plaintiff, Dr. Diana Barnard, a hospice and palliative care physician in Middlebury, Vt., who was frustrated that she could not offer medical aid in dying to her patients from neighboring New York.

It was the beginning of a beautiful friendship. Lynda and Barnard forged a formidable team. In August 2022, they sued the state of Vermont, arguing the residency requirement in Vermont’s 2013 medical aid in dying law violated the Constitution’s equal protection clause, among others.

Seven months later, lawyers on both sides had hammered out a settlement, allowing Lynda to take advantage of Vermont’s medical aid in dying process without establishing residency. Two months later, prompted by Lynda’s case, Vermont legislators passed, and Governor Phil Scott signed, a new law ending the residency requirement.

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Lynda was now free to carry out her plan, under the care of Barnard. But the law still presented a host of legalistic and bureaucratic hoops Lynda had to jump through.

She had to meet with Barnard on two separate occasions, for hours, to explain her condition and why she wanted to end her life. She had to submit a separate written request to Barnard, stating the same thing that she had said in the face-to-face meetings. Then she had to consult with a second physician, as if Barnard’s counsel was not enough.

The law also required her to find two people who would witness her written request, affirming that she appeared to understand what she was signing and was not under duress.

It was a requirement that infuriated Lynda, particularly when she recalled what Cathey April had told her she endured to fulfill it three years earlier.

Already quite sick after moving to Vermont, and having no connections in the state, April had gone to a nearby coffee shop in search of people who might sign. The first person she approached refused. She then asked a man working on a trash truck on the street outside, who had the same reaction: No. April walked into another cafe. One person agreed to sign the form; everyone else shook their heads.

April was distraught. By the time she made it inside a bookstore, she was out of breath and in tears. The owner took pity on her and signed the form.

“The law treats people like they are children, or incompetent, with no agency,” Lynda said, after her second meeting with Barnard at Porter Medical Center in Middlebury in August. “These are not safeguards. They are arbitrary hurdles that make people who are already suffering suffer even more.”

At one of the meetings in July with Barnard, Lynda asked a Globe columnist [see editor’s note] and also a member of the documentary team following her story to sign the form saying she knew what she was doing and wasn’t under duress.

Lynda checked the signatures, slipped the forms into a folder, and later said, “I wish it had been that easy for Cathey.”

“I’m afraid,” Paul Bluestein said.

Labor Day weekend was upon them. The family had gathered in the Bluesteins’ living room, Lynda and her husband and two children, Jake and Aimee. A social worker from a Connecticut hospice practice had come to talk to them. Paul was trying to explain how he felt about Lynda’s increasingly imminent death, and how he would feel when she was gone.

“Even now,” he said, “I find it hard to focus to get things done.”

The social worker nodded and said that feeling was likely to come and go, that he would “come in and out of grief.”

The social worker turned to Lynda and asked about her grief.

“Mine is I’m not going to see things,” Lynda said. “I won’t see my granddaughters grow up.”

The social worker talked of memories and how each of them would find their own way to remember Lynda, always.

Aimee was in tears. Lynda asked her daughter what she remembered about her grandmother, dead for nearly 30 years.

“Her mac and cheese,” Aimee said.

“You don’t cry when you have mac and cheese now,” Lynda said. “It makes you smile. We no longer cry when we think of our dogs who have died. Memories are going to get us through this. We’re just lucky that we have time to talk about this stuff. People don’t talk about dying.

“A good death is what I want. I don’t want to get so sick and not know who you are. I don’t want you to look at me and I’m in so much pain we can’t talk. I’m always going to be there. My voice will come. When I was 6 or 7 years old, I knew what heaven would be. I told a nun that God was going to serve mashed potatoes with every meal. Heaven was getting your favorite food. But now I realize heaven is what I have now.”

Lynda did not want a funeral or a memorial service. But she did have certain requests. She told Paul he had to make the bed. Every day.

And she wanted to leave something tangible behind. Something that would help those who grieve. She settled on wind phones, a tradition started in Japan that encourages people to maintain spiritual contact with dead loved ones by speaking to them on old, disconnected phones installed in peaceful settings.

Lynda began collecting old phones. She asked her son, a general contractor, to install them in various places in Connecticut: her back garden, a church in Ridgefield, a library in Westport. She created a nonprofit to install wind phones across the country for anyone to use.

For almost all of her 76 years, Lynda was a vibrant, vivacious woman. But as fall crept toward winter, each day seemed to take something away. The things she loved to do — gardening, baking, cooking, writing — she began to do less of.

The mass shooting in Lewiston, Maine, shook her. As her days dwindled, the drumbeat of shootings, the overturning of Roe v. Wade, the state of the nation in general, weighed on her.

“I now look back on so much of my advocacy as a lot of sound and fury that changed nothing,” she said in November.

For all her frustration, she was determined to follow through on her final cause, her most intensely personal advocacy.

On Thanksgiving, she took a bite of stuffing and got violently ill, her body failing.

She made her last preparations. She picked the house where she would die. It had to be Bill Kilgour’s house, where her friend Cathey April died. Lynda set a date when she would pass, Feb. 2.

“My final joke,” she said. “Groundhog Day.”

There were other things she imagined happening during those last few days at Kilgour’s house. A pizza party, an a cappella group serenading her, Zoom calls to friends and family. But suddenly there was no time. On the morning of Jan. 3, Jake helped her into the red Honda, and Paul sped off to Vermont, all of them worrying that they had waited too long.

As dawn broke on the morning of Jan. 4, the worry fell away. Lynda woke refreshed.

“What’s the plan?” she asked Kilgour, her eyes bright and focused, her expression determined.

The difference in Lynda’s demeanor and energy was stunning. A good night’s sleep, and knowing she had made it here, changed everything.

It was gray outside, the dawn providing a dull daylight.

Paul stood by Lynda’s side, smiling. Forty-two years of marriage, all down to this.

“I’ll make the bed,” he promised.

“Every day,” Lynda commanded.

Paul rested his forehead on Lynda’s, moving back and forth, gently.

“I’ll call you on the wind phone,” he promised.

“Every day,” Lynda commanded.

Aimee, Jake, and Jake’s 17-year-old twin daughters, Josie and Abby, had been staying at a hotel in another town and when Lynda heard they had just parked in Kilgour’s driveway, she thrust her arm triumphantly into the air and chirped, “Yeah!”

One by one, her children and grandchildren approached, and Lynda threw her arms open wide.

Outside, big snowflakes began to drift from the sky.

Kilgour, the hospice specialist, came to her bedside with medication that would reduce her nausea and a sedative that would relax her.

“Are you good?” he asked.

She looked at him and said, drily, “I didn’t promise to be good.”

Twenty-five minutes later, Kilgour handed her the fatal cocktail of drugs, its bitter taste diluted with apple juice.

Lynda drank it, on her own.

“I’m so happy I don’t have to do this anymore,” she said to Paul.

And then, surrounded by her family and a sense of accomplishment, she drifted away.

Just minutes after his mother died, Jake led his daughters and Aimee to Bill Kilgour’s kitchen table. Jake handed them a stack of cards and envelopes. Lynda had wanted to write to a score of people before she died, but she’d run out of time. Aimee and the girls wrote in each card: “Lynda wants you to know you are special.”

The snow was falling hard and fast as Jake led the girls down the hill, to the small post office, to mail the 21 letters.

Back at the farmhouse, Jake made a snowball in the driveway and fired it toward his daughters. They wailed in delight and fired some back at him. Aimee smiled.

In the stillness that had befallen the room after his mother had passed, Jake felt dazed by the sudden reality of loss, but he felt happy, too — happy that his mother had died as she wished, on her own terms, knowing that her story might lead others to change the way they think about death, that it might give some the faith to seize the personal agency she believed in so fiercely.

But something else nagged him as he and his family waited for the undertaker who would take his mother’s body to be cremated. As important and meaningful as his mother’s quest had been, as peaceful as the end was, there still seemed to him a terrible injustice in the laws that forced his mother to launch her fight to begin with.

“She shouldn’t have had to do this,” he said. “She should have been able to die in her own home, in her own bed. She shouldn’t have had to do this.”

Kevin Cullen is a Globe reporter and columnist who roams New England. He can be reached at kevin.cullen@globe.com.