For years, Karen Wentworth knew how she wanted to die.
A plan was detailed in a small green notebook she kept next to a lamp in her South Portland home. It was easy to reach in case the appendix cancer that stole Wentworth’s strength, appetite and many of her organs for over a decade made a final play for her life.
The book had her do-not-resuscitate directive, plus phone numbers for the funeral home and burial grounds that would take care of her. It was meticulous, like its owner.
It was one of the two reminders of her death in the home, relatively small details in a ranch house on a quiet side street filled with houseplants and comfortable furniture. The other was a small blue bag adorned with boats and waves, surrounded by crystals and feathers on a table in her office. Nestled in it were the medications that would end her life.
Wentworth was the second person in the state to get a prescription under Maine’s 2019 death with dignity law, according to the Maine Death With Dignity organization. Since the law passed, 94 people have used a combination of drugs to end their lives from 2019 to 2021, state data shows. Most people who had a prescription written used it within 20 days.
To get the medication, a doctor needs to determine you have no more than six months to live. Wentworth’s doctors certainly thought she qualified when she was first prescribed in November 2019. But Wentworth beat their projections by over three years.
Knowing she had control over her death gave Wentworth peace. She hoped others might learn from her story, which she agreed to share with a reporter for more than two years. Her journey provides a rare window into the complex decisions facing someone with the option to end their life.
Wentworth did not know choosing to live would bring crushing loss and deep joy. But she always knew two things: She would never be hospitalized again, and she would not suffer in her death.
“I might not use the medication,” Wentworth said in July 2020, sitting in the shade of her garden. “But I won’t know until I’m there.”
Like many Mainers, Wentworth came to the state as a child, when her family visited York Beach and Kennebunk in the summer. She, her former husband and their daughter, Alison Batignani, moved to Kennebunk in 1996.
She grew up in East Hartford, Connecticut, near a paper mill by a river. Wentworth said she would spend her free time skipping rocks across the current and waving to the millworkers through the windows.
She held many jobs, ranging from a waitress at a high-end restaurant to a specialty Italian food store owner. For a time she taught home economics at Sanford High School.
Deirdre Sulka-Meister, who knew Wentworth through The Dempsey Center’s advanced cancer support group, said Wentworth was one of the most consistent members, and one of the most upfront about her illness and journey toward death. She did so in hopes of giving others a way to confront their own mortality, she said.
“She wanted to be strong and vulnerable at the same time, and continue to show the way,” Sulka-Meister said.
After Wentworth and her husband split in 2006, she moved to New York and began a career in social service work as the ombudsman for the Covenant House, a group focused on helping at-risk youth. The work was difficult but rewarding, she said.
That eventually brought Wentworth to Through These Doors, a domestic violence resource center serving Cumberland County. She headed up its education and outreach work, but was often on call for the crisis line after hours, which meant having a pager from 9 p.m. to 5 a.m., said Matthew Perry, a former coworker.
Days were often spent teaching health care professionals about signs of domestic violence. Nights could be scary. Once, Perry and Wentworth dealt with a person with a gun outside the center. They sometimes attended vigils for domestic violence victims killed by their partners, Perry said. Sometimes they were the last person a victim spoke with.
Wentworth maintained a sense of hope despite the disheartening aspects of the work, said Clara Porter, director of the domestic violence prevention group Prevention Action Change in Portland. At one point, Wentworth led Through These Doors’ batterer intervention program, working with men who had committed violence.
Porter had a hard time imagining doing that kind of work. Wentworth took to it.
“She had a real belief in humanity, that we all have the capacity to change and be better,” she said.
To give her deep spirituality a label would be impossible. Wentworth said Christianity was the foundation of her beliefs, but she dabbled in shamanism and was particularly drawn to the First Parish church in Portland, which follows the Unitarian Universalist’s progressive creed. She obtained a doctorate of ministry from the Chaplaincy Institute of Maine.
Even before her cancer, Wentworth was curious about death and how people face it. She wrote two books, one on coastal cemeteries and another on the spiritual landscape of Maine.
During the research on the second book, Wentworth met a sect of gnostic Christians who introduced to her the idea of divine purpose and its importance in life.
“Their slant on it was, if you embrace (your divine purpose), you will be blessed with success and accolades,” said Charlie Thieme, her longtime partner.
“But if you deny it and suppress it, it will destroy you.
“I would have to say that was the way she lived her life, looking for that divine purpose.”
Wentworth’s medical journey began two decades before she was declared terminal.
A bad reaction to a hepatitis B vaccine in 1998 triggered ocular myasthenia, which weakens the muscles around the eyes and can cause double vision. Doctors, fearing she might have multiple sclerosis, ordered a brain scan. They found a tumor growing on the sheath of her brain. The prognosis was frightening but treatable.
The vaccine’s effects gave Wentworth double vision for years, but the tumor was easily removed and never returned. The ocular myasthenia was in remission by 2010.
“I thought, ‘Great, I’m done,” Wentworth said.
But in 2012, Wentworth began to suffer from bloating, nausea and creeping pain in her pelvic region. Her first set of doctors at the Dana Farber Cancer Institute in Boston diagnosed it as later-stage ovarian cancer, based on a tumor they found on her remaining ovary left over from a hysterectomy.
The tumor was so large it obscured her appendix. It was not until a winter 2012 surgery that Wentworth received a different diagnosis: a rare type of appendix cancer, which the National Institute of Health’s cancer division estimates only about one or two people per million in the U.S. get each year.
Wentworth’s palliative care doctor, Mark Wrona of New England Cancer Specialists, explained her disease like this: The cells of the appendix’s lining overproduce a mucus that coats the abdomen. The cancer manifested as low-grade mucinous neoplasms, creating adhesions of scar tissue or tumors.
The real danger, Wrona said, is the mucus can create ropey tethers between the abdomen wall or the nearby organs, such as the intestinal tract or the bladder. The tethers twist intestines or create kinks that cause blockages or choke off one of the organ’s blood supply.
Between 67 and 97 percent of people with the cancer live five years after developing it. The survival rate then drops.
The first winter surgery was brutal, Wentworth said. The surgeon removed her appendix, ascending colon, remaining ovary and her omentum, a protective tissue around the stomach and other organs.
What came next was six years of invasive, sometimes terrifying procedures. Wentworth’s disease was managed by periodic surgeries that cut her open from pubic bone to sternum, creating a thick seam of scar tissue. She would endure six cancer-related surgeries altogether, resulting in the loss of several organs and, eventually, all of her intestinal tract except for the descending colon.
Part of the treatment involved using hyperthermic intraperitoneal chemotherapy. It is not for the faint of heart: A heated chemotherapy cocktail is poured into a patient, the wound briefly closed while the solution is swished around, and then the wound is reopened to empty the drugs out.
“It leaves the guts feeling completely gross,” Wentworth said.
The loss of intestines meant Wentworth had to be careful about eating. Mundane things like bowel movements and staying hydrated became critical to living.
The occasional blockages in her intestines usually cleared on their own, but they were disruptive. One blockage occurred just six days before her daughter’s wedding in Charleston, S.C.
“I drove myself to Maine Medical Center, crying the entire time,” she said. “Every nurse I told also cried. I made it to (the wedding), and as usual was fearful of food.”
The hardest thing for Wentworth to lose to her illness was food, Thieme said. An adventurous eater, she had him take her to expensive restaurants during their early courtship. One dinner stood out: Thieme’s Scotch cost $125.
But he was happy to take Wentworth out. She loved the professionalism of high-class restaurants and the careful way staff worked with guests. As her condition worsened, his ability to treat her lessened.
“Every few months there would be some other foods that she could no longer tolerate,” he said.
By 2020, her list of tolerable foods had shrunk to oatmeal, eggs, a little chocolate and potatoes. It was just potato chips and a little quiche by the end of 2022. Wentworth tried to make the most of it by buying multiple flavors of chips — salt and vinegar, white cheddar, sea salt. She could eat a few at a time.
Wentworth’s only child, Alison Batignani, offered support from her home in Atlanta. She was well-versed in her mother’s illnesses; Wentworth had been sick in one way or another since Batignani was 16. Her daughter spent much of her vacation time in Maine visiting or helping out during surgeries.
Whereas her daughter held her emotions close to her chest, Wentworth was not afraid to cry and show her feelings. They were best friends and talked almost every day, Batignani said.
But the distance was a struggle. When Wentworth was diagnosed in 2012, Batignani wanted to quit school and move home. Her mother told her to stay in Atlanta. She did and landed a job as a motion graphics designer.
“I thought, ‘I’ll just put my life on pause,’ ” Batignani said during an October 2020 visit, sitting kitty-corner to her mother at her kitchen table in South Portland, “and I think you encouraged me not to. I don’t think a lot of moms would do that.”
They both felt guilty at times. Batignani wished she was closer, or more adept at dealing with the administrative side of her mother’s medical care. Wentworth wished her daughter did not have to spend so much time on her illness.
“I don’t think you should have to feel any sense of responsibility,” Wentworth said, shaking her head, looking back at her daughter. “You’ve been wonderful.
“You’ve been right here the whole time.”
Wentworth thought she was going to die in 2018.
After developing a blockage that would not clear, she faced the choice of following her surgeon, who changed practices, to Lewiston, or visiting Maine Medical Center. The doctor that her physician recommended seemed competent but inexperienced with her illness. Later she regretted not making the long drive to Lewiston.
The doctors tried to send her home after five days at Maine Medical Center, even though she hadn’t passed gas or had a bowel movement. Wentworth, a veteran at this point on all things digestive, knew that meant she was not ready to leave. She vomited the next day and did not get another bed at Maine Medical Center until two days later.
The next 45 days were often a blur: A gastric tube was put in to open Wentworth’s bowels. Abscesses developed along the wounds. At one point Wentworth thought she was dying. She remembers little else.
When she finally went home, the methods and medicine meant to keep her alive started to work against her. The steroids helping her recover prevented the skin around her tube from healing tightly, causing acids and fluids to leak from her stomach and burn her skin.
And the chemotherapy had roughened her skin tissue, giving it an almost fiber-like, woody texture. Her body could not tolerate another surgery. Doctors told her she had three months, maybe a year, to live.
It was September 2018. In hindsight, she wondered if not knowing the prognosis would have been better.
“But then, to feel as sick as I did then, it seemed like a good estimate,” she said.
That news came as organizers for Maine Death With Dignity, an organization focused on promoting medication-assisted dying, began to collect signatures for a potential referendum campaign. The plan was to go through the Legislature first and to the ballot box if that failed.
Maine Death With Dignity’s executive director, Val Lovelace, had met Wentworth through the Chaplaincy Institute of Maine. Wentworth wanted to help with the signature drive, which gave her something to focus on.
After dozens of witnesses testified, the law passed the state Legislature by slim margins: four votes in the House of Representatives, three in the Senate.
Gov. Janet Mills, in the first months of her tenure, then had to decide whether to support it. She signed the bill in June, but in remarks to reporters said she wrestled with whether the responsibility of society to care for the ill conflicted with a person’s right to end their life without suffering.
She reflected on her own experience with end-of-life care in a Maine Supreme Judicial Court case from more than 40 years earlier. In that case, the court weighed whether life-sustaining care could be ended for a person in a permanent vegetative state.
Joseph Gardner, at the center of that case, had told friends and family that he would not want to be kept alive on a feeding tube if he was permanently incapacitated. A fall from a pickup truck when he was 22 left him unable to feed himself, control his bodily functions or speak. There were no signs of brain activity.
His mother argued Gardner’s wishes should be respected. A judge agreed. But Androscoggin County, represented by Mills, then a young district attorney, opposed the decision, taking it to the high court. In the end, a majority of justices agreed with Gardner’s family, finding his expressed wishes were sufficient evidence that he would no longer wish to live in his current state.
Mills, 42 years later, hoped the new death with dignity law would honor Mainers’ rights to determine their own fate.
“It is not up to the government to decide who may die and who may live, when they shall die or how long they shall live,” she said in 2019.
When the law went into effect three months later, Wentworth jumped at the chance to access the medication. The compounding pharmacy offered to keep the prescription on hand until she needed it.
Wentworth took it home and swaddled the drugs in a blue pouch.
With a prognosis in mind, Wentworth had to look back to contemplate what it meant for her to live.
The social services work Wentworth had done was important to her, but tiring. When she flipped back through her journals, it was clear to her that work had taken its own emotional toll.
“I think that in another world I would have been able to manage my illnesses better by not working so much,” she said. “But this is the world we have. You have bills to pay.”
It also meant getting her affairs in order. She created the green book. She donated clothes and other belongings at a rapid pace, until her daughter urged her to slow down.
Mostly, Wentworth just tried to exist. After several months of recovering from surgery, in the summer of 2020 Wentworth had regained the strength to walk to Willard Beach down the street from her home. Always a slight woman, she had dropped to 96 pounds during the worst of the ordeal. She gained 10 pounds back, mostly mucus.
Days were distilled into little moments: the way the waves looked one day. A particularly vivid dream journaling experience. Watching a sparrow rest in her bushes, only to suddenly flit across the garden — away from a hawk roosting in the trees above, she realized later.
When she had the strength, Wentworth would have friends over — at a distance during the pandemic because of her immunocompromised status. A bout of fever nearly canceled an August 2020 dinner, but Thieme seated the guests on the porch, where their voices drifted through a window. Wentworth, lying on a couch inside, listened and chimed in.
“There was a time when I would have been really jealous,” she said, “but you’re always letting go of stuff and over time, that gets easier for me.”
There was some refuge in her Dempsey Center support group, a collection of mostly women living with late-stage cancer. Wentworth said it gave her a space to vent, to laugh and grieve with others going through the same thing.
Joy Mills, a Peaks Island resident living with metastatic breast cancer, said she and Wentworth, along with another woman, occupied a unique space in the group because they had been attending longer than others, and that gave them a level of honesty with each other that was comforting. It was also intense, and some people may have left the group because of it, she thought.
That intensity had caused Wentworth to leave a prior support group. She had liked that group but their lives were too different.
“I feel like I inhibit myself a little bit because I’m at the other end,” she said. “And it’s just different from what it feels like if you’re going through chemo, and you’re still really hopeful.”
Punctuated by those thoughts was the physical manifestation of her illness: a tumor growing against her bladder. If she pressed gently, she could feel it through the delicate skin of her belly.
Wentworth had made peace with the idea of dying, and was certain it would be her choice in the end. She was less sure about the how and when.
Timing the medication when a fatal blockage or illness was inevitable would allow her friends and family time to visit one last time. But after seeing two friends die gradually and peacefully in hospice care in 2021, she considered whether that option would be better because the timeline of dying would be roughly the same.
And there was the formality of taking the medication to consider.
It was mostly Batignani and Thieme who prevented her from taking the medication, Wentworth said during a fall 2020 visit to the Cedar Brook burial grounds in Limington.
Standing in the filtered sunlight from the trees where she would eventually be laid to rest, she worried about how her death would affect them. But she was also determined to live: As long as she could eat and have bowel movements, she was doing OK.
“There’s always something that kind of brings you back,” Wentworth added, “when you’re feeling gloomy.”
Cedar Brook is an eco-friendly cemetery that Wentworth chose because she liked the idea of not contributing to environmental damage sometimes caused by the typical embalming process. She had read that a person’s dead body will nourish plants and their scent is absorbed by trees.
Her stone, engraved with her date of birth and an infinity symbol, would be surrounded by ferns. Her mother had chosen the spot next to her, in hope the family would visit both of them when they died. Wentworth chose a woven willow casket that would deteriorate and return her to the earth.
Throughout the years, on visits to the burial site, painful nights, and walks to raise money for The Dempsey Center, Thieme, her longtime partner, was often at her side.
A U.S. Census Bureau volunteer, he and Wentworth had met several years ago through the First Parish church in Portland, during an open mic cello performance.
Thieme jokes that he fell in love with Wentworth for her legs, but it was more than that. No subject matter was off limits, and that honesty and attraction brought them together in the end, despite a few on-and-off years.
He tried to keep her focused on the present and keep his grief at bay. Her illness was slow and gradual, and he knew he wanted to enjoy what time they had left.
Sometimes life conspired against that peace.
Wentworth had qualified for hospice when she was deemed terminal in 2018. That meant her care was less about sustaining her life and more about improving the time she had left. It also meant saving thousands of dollars at times on medications and treatments.
But in the fall of 2020, her insurer threatened not to cover a new intake port on her torso that would make hydration and medicine delivery much easier. The company argued the device was life-sustaining. Wentworth and her doctor disagreed. A week later, the insurer recertified her and the port was covered.
Then there was a dryer fire in January 2021 that filled her house with oily smoke. Hardly anything in the home Wentworth had lived in since 2008 had been touched directly by the flames, including a puzzle mostly finished on a coffee table. But it was ruined by smoke nonetheless.
Her friends and family mobilized to gather new clothes and find her a more permanent place to live while the damaged home was renovated. A months-long dance with her insurer began, as she made decisions on which doors and what fixtures would go into what used to be her home.
She bought new eyeglasses and earrings. She had to refill her prescription for the life-ending medication because the current supply was compromised by the smoke. A new blue cloth swaddled it.
Her daughter tried to encourage her. But to Wentworth, the Sisyphean task before her was one more obligation she had to live for, a project for a future she had stopped thinking about. She had let go of many of her responsibilities, she realized, and was living to die.
“There’s so much emphasis on, ‘Oh, you’re so lucky you’re not dead,’ ” Wentworth said, a weariness roughing her voice over the phone a few weeks later.
“There’s no luck involved here. Lucky is not getting cancer and not having your house burned down.”
But in the spring 2021, there was a spark of hope. After years of trying, Batignani was pregnant. Amid the grief of losing her home, Wentworth found a different motivation. She would live to return home and meet her grandchild.
She did both, moving back into a redesigned home in the late fall of 2021. In December, Michael was born, and quickly dominated Wentworth’s social media feeds. Batignani said her mother was eager to meet her grandson, but a trip to Maine so soon was out of the question.
Wentworth, previously anxious about traveling due to the pandemic, went to Georgia instead.
“Great to be here!” she wrote on a photo caption on Facebook, 9-week-old Michael in her arms.
Three years after she was supposed to have died, Wentworth found a rhythm.
There were walks on the beach. There were mornings filled with meditations and dinners of a few potato chips at a time. The lilies in the garden needed attention. The green book, once so prominently displayed, had moved into Wentworth’s office.
There was a project with Naeem Mohaiemen, a senior research fellow at Colby College’s Lunder Institute for American Art who had lost his father recently. Mohaiemen was interested in exploring end-of life-treatment, and connected with Wentworth through the Death With Dignity organization.
His project, “grace,” includes a 40-minute documentary exploring Wentworth’s relationship with death. Scenes of Wentworth selecting pieces for the accompanying art exhibit are interwoven with bits of Wentworth explaining how she stays alive, and how she might die.
“I’m a good soldier,” she says in the film.
Wrona, her palliative care doctor, agreed. Wentworth never strayed in her quest to find foods that would not upset her delicate stomach. She made smoothies and tried chicken liver to keep her nutrients up as her food consumption decreased. Wrona said her craftiness with food was what probably kept her alive so long.
And there were occasional visits with her daughter and grandchild, who made their way to Maine whenever they could.
But it was clear to Wentworth’s loved ones as the fall approached that her condition was worsening.
There were incidents that gave her pause, such as when the food she ate the night before would sometimes spill out of her gastric tube, undigested.
Her muscles were getting frailer and her stamina was fleeting. She started using a cane.
Then the infections in her abdomen and the lesions developing on her stomach along the fault line of scar tissue started. The wounds would leak, Thieme said, so Wentworth would bandage them over and over again.
“A lot of indignities for a classy lady,” Thieme said.
She began to worry that a major, more painful illness was on the way. In December 2022, Wentworth told Thieme she was planning to pick a date in January to end her life.
By then, more than four years had passed since she was declared terminal, three more years than when she was expected to die. She was 67. There was a sense of relief, he said.
“She hung in there for me and Ali,” he said. “She postponed it as long as she could.”
Batignani saw a dramatic change from the summer, when she had seen her mother last, to Christmas. She could not eat the food her daughter brought. When discussions of the future came up, she alluded she might not see spring.
They had tried to stay strong for each other for years, Batignani said. They cried when they parted a few days after Christmas.
“She was like, ‘I might not see you again,’ ” she said.
Still, Batignani was shocked when her mother called just a few days later to tell her the news: She would die on Jan. 12, in Maine. She had waited, Batignani said, until the day after her birthday to tell her so she wouldn’t ruin it.
There was some debate of whether Batignani and her family would return to Maine for the death. At first, Wentworth did not want her there because it would be too hard. But then Wentworth’s siblings wanted to come and Wentworth changed her mind.
Batignani ultimately decided it would be too much for her to join the family in Maine. The days in between were filled with anxiety and some regret over that choice. But she spoke with her mother every day.
Wentworth had sent an email to her close friends, telling them they would be welcome to visit around 2 p.m. the day of her death, roughly the time she expected the medication would have finished its job.
Before, Wentworth had envisioned dying surrounded by her loved ones. But in those final days, she wanted to be alone, Thieme said.
There were two reasons, he thought: the decision to die, while something Wentworth was ready for, was momentous, and she needed to reckon with it.
The other was more complicated: Wentworth had spent much of her life entertaining people. At the end, Thieme said she did not want to be responsible for people’s experience of her death – to worry about how they would feel and what they would need in her final hours.
The last days were mundane. Thieme said the two kept to their schedule of watching the news and catching up on Netflix’s “Wednesday” series, talking about world events and going for short walks. Wentworth had wanted to die among flowers, so her friends sent dozens of blooms to fill up the house.
Her loved ones waited. Deirde Sulka-Meister, a friend from her cancer group, said the news was shocking to those who did not realize the depth of Wentworth’s suffering.
But Wentworth still tried to give them encouragement. She communicated with friends via texts, emails and phone calls. She told them to look for crows, a bird associated with death that she felt particularly drawn to.
“Even while she was actually sitting in her relief, not having to be in this body anymore, she was also holding so much compassion for us,” Sulka-Meister said.
Joy Mills, who a week later would help run Wentworth’s funeral service, said it was hard not to fret about Wentworth in those final days. Would something go wrong with the medication? Was her friend comfortable?
But the two of them also discussed Wentworth’s service, which would have elements of the Unitarian and Episcopal faiths. It helped, too, to know her friend would soon be at peace.
“The service is for Ali,” Mills said Wentworth told her. “The burial is for me.”
On the morning of her death, Wentworth and Thieme watched the news, as they had for years. Afterward they talked about how the day would go.
Just before people began to arrive, Wentworth sat on Thieme’s lap. They kissed. She reminded him that she loved him, Thieme said.
Among the attendees was Wrona, who long ago promised Wentworth he would be there for her death if she asked. Wentworth was not his first patient to die using life-ending medication, and he knew it could take a while. Sometimes a person’s breathing would become irregular, or they would make noises, and it helped the family and friends to have someone explain what was happening.
Perhaps more importantly, Wrona wanted to ensure the medication was taken quickly and correctly. If Wentworth did not finish it all in time, she could fall asleep and wake up, still alive, her wishes unmet.
At noon on Jan. 12, surrounded by flowers and candles, Wrona mixed five medications into water, the only thing Wentworth felt would not upset her stomach. Two sedatives, to put her to sleep. Amitriptyline and digoxin, to slow and stop the heart. And morphine, to ensure there was no pain.
The first sip was bitter, Wentworth told Thieme. She was referring to the taste but also the act itself, he later thought.
To cut the taste, they scraped the rime off some chocolate gelato in the fridge, and fed her small spoonfuls between each sip.
In a minute and a half, the drink was finished.
“This will happen quickly,” Wrona told her.
Thieme, who had slept by Wentworth’s side for years, crawls into bed to lay beside her. He holds her hand. Her sister, on the other side of the bed, grabs her hand as well.
“Yes,” Wentworth says.
Then, “Oh,” she says, beginning to fall into a deep sleep.
“It’s happening.”
Wentworth was able to have the death of her choice. It was a comfort to some who attended her funeral, held a week after her death at the First Parish church.
The woven willow casket was guarded by a stuffed panda bear, Michael’s favorite animal. A soundtrack curated by Wentworth herself played Norman Greenbaum’s “Spirit in the Sky,” then Blue Oyster Cult’s “(Don’t Fear) The Reaper.”
At one point Michael, now over a year old, fussed, but Batignani let him roam around the chapel as people offered prayers and remembrances. Attendees waved as he peered into pews and smiled back. His mother stayed right behind him to ensure he did not fall.
The burial, attended by Wentworth’s close family and friends, was held the next day under a gray sky. The blue cloth that held Wentworth’s medication was draped across the coffin, its purpose fulfilled.
Wentworth’s home went to Batignani but is being watched over by Thieme until she decides what to do with it. Two weeks after her death, a cream sweater still lay upon her bed. The plants in her mediation room remained healthy. Next to her desk, her purse sat untouched.
