Debby Waldman | (TNS) KFF Health News

In the 18 months after Francine Milano was diagnosed with a recurrence of the ovarian cancer she thought she’d beaten 20 years ago, she traveled twice from her home in Pennsylvania to Vermont. She went not to ski, hike, or leaf-peep, but to arrange to die.

“I really wanted to take control over how I left this world,” said the 61-year-old who lives in Lancaster. “I decided that this was an option for me.”

Dying with medical assistance wasn’t an option when Milano learned in early 2023 that her disease was incurable. At that point, she would have had to travel to Switzerland — or live in the District of Columbia or one of the 10 states where medical aid in dying was legal.

But Vermont lifted its residency requirement in May 2023, followed by Oregon two months later. (Montana effectively allows aid in dying through a 2009 court decision, but that ruling doesn’t spell out rules around residency. And though New York and California recently considered legislation that would allow out-of-staters to secure aid in dying, neither provision passed.)

Despite the limited options and the challenges — such as finding doctors in a new state, figuring out where to die, and traveling when too sick to walk to the next room, let alone climb into a car — dozens have made the trek to the two states that have opened their doors to terminally ill nonresidents seeking aid in dying.

At least 26 people have traveled to Vermont to die, representing nearly 25% of the reported assisted deaths in the state from May 2023 through this June, according to the Vermont Department of Health. In Oregon, 23 out-of-state residents died using medical assistance in 2023, just over 6% of the state total, according to the Oregon Health Authority.

Oncologist Charles Blanke, whose clinic in Portland is devoted to end-of-life care, said he thinks that Oregon’s total is likely an undercount and he expects the numbers to grow. Over the past year, he said, he’s seen two to four out-of-state patients a week — about one-quarter of his practice — and fielded calls from across the U.S., including New York, the Carolinas, Florida, and “tons from Texas.” But just because patients are willing to travel doesn’t mean it’s easy or that they get their desired outcome.

“The law is pretty strict about what has to be done,” Blanke said.

As in other states that allow what some call physician-assisted death or assisted suicide, Oregon and Vermont require patients to be assessed by two doctors. Patients must have less than six months to live, be mentally and cognitively sound, and be physically able to ingest the drugs to end their lives. Charts and records must be reviewed in the state; neglecting to do so constitutes practicing medicine out of state, which violates medical licensing requirements. For the same reason, the patients must be in the state for the initial exam, when they request the drugs, and when they ingest them.

State legislatures impose those restrictions as safeguards — to balance the rights of patients seeking aid in dying with a legislative imperative not to pass laws that are harmful to anyone, said Peg Sandeen, CEO of the group Death With Dignity. Like many aid-in-dying advocates, however, she said such rules create undue burdens for people who are already suffering.

Diana Barnard, a Vermont palliative care physician, said some patients cannot even come for their appointments. “They end up being sick or not feeling like traveling, so there’s rescheduling involved,” she said. “It’s asking people to use a significant part of their energy to come here when they really deserve to have the option closer to home.”

Those opposed to aid in dying include religious groups that say taking a life is immoral, and medical practitioners who argue their job is to make people more comfortable at the end of life, not to end the life itself.

Anthropologist Anita Hannig, who interviewed dozens of terminally ill patients while researching her 2022 book, “The Day I Die: The Untold Story of Assisted Dying in America,” said she doesn’t expect federal legislation to settle the issue anytime soon. As the Supreme Court did with abortion in 2022, it ruled assisted dying to be a states’ rights issue in 1997.

During the 2023-24 legislative sessions, 19 states (including Milano’s home state of Pennsylvania) considered aid-in-dying legislation, according to the advocacy group Compassion & Choices. Delaware was the sole state to pass it, but the governor has yet to act on it.

Sandeen said that many states initially pass restrictive laws — requiring 21-day wait times and psychiatric evaluations, for instance — only to eventually repeal provisions that prove unduly onerous. That makes her optimistic that more states will eventually follow Vermont and Oregon, she said.

Milano would have preferred to travel to neighboring New Jersey, where aid in dying has been legal since 2019, but its residency requirement made that a nonstarter. And though Oregon has more providers than the largely rural state of Vermont, Milano opted for the nine-hour car ride to Burlington because it was less physically and financially draining than a cross-country trip.

Francine Milano with her husband, Kris Brackin. She would’ve preferred to travel from her home in Pennsylvania to neighboring New Jersey for medical aid in dying, but it is allowed there only for state residents. Instead she has arranged to die in Vermont, one of two states that explicitly allow medical aid in dying for nonresidents. (Eric Harkleroad/KFF Health News/TNS)

The logistics were key because Milano knew she’d have to return. When she traveled to Vermont in May 2023 with her husband and her brother, she wasn’t near death. She figured that the next time she was in Vermont, it would be to request the medication. Then she’d have to wait 15 days to receive it.

The waiting period is standard to ensure that a person has what Barnard calls “thoughtful time to contemplate the decision,” although she said most have done that long before. Some states have shortened the period or, like Oregon, have a waiver option.

That waiting period can be hard on patients, on top of being away from their health care team, home, and family. Blanke said he has seen as many as 25 relatives attend the death of an Oregon resident, but out-of-staters usually bring only one person. And while finding a place to die can be a problem for Oregonians who are in care homes or hospitals that prohibit aid in dying, it’s especially challenging for nonresidents.

When Oregon lifted its residency requirement, Blanke advertised on Craigslist and used the results to compile a list of short-term accommodations, including Airbnbs, willing to allow patients to die there. Nonprofits in states with aid-in-dying laws also maintain such lists, Sandeen said.

Milano hasn’t gotten to the point where she needs to find a place to take the meds and end her life. In fact, because she had a relatively healthy year after her first trip to Vermont, she let her six-month approval period lapse.

In June, though, she headed back to open another six-month window. This time, she went with a girlfriend who has a camper van. They drove six hours to cross the state border, stopping at a playground and gift shop before sitting in a parking lot where Milano had a Zoom appointment with her doctors rather than driving three more hours to Burlington to meet in person.

“I don’t know if they do GPS tracking or IP address kind of stuff, but I would have been afraid not to be honest,” she said.

That’s not all that scares her. She worries she’ll be too sick to return to Vermont when she is ready to die. And, even if she can get there, she wonders whether she’ll have the courage to take the medication. About one-third of people approved for assisted death don’t follow through, Blanke said. For them, it’s often enough to know they have the meds — the control — to end their lives when they want.

Milano said she is grateful she has that power now while she’s still healthy enough to travel and enjoy life. “I just wish more people had the option,” she said.

___

(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

Nada Hassanein | Stateline.org (TNS)

Every day, 8-year-old Emma sits in a small garden outside her grandmother’s home in Salem, Ohio, writing letters to her mom and sometimes singing songs her mother used to sing to her.

Emma’s mom, Danielle Stanley, died of an overdose last year. She was 34, and had struggled with addiction since she was a teenager, said Brenda “Nina” Hamilton, Danielle’s mother and Emma’s grandmother.

“We built a memorial for Emma so that she could visit her mom, and she’ll go out and talk to her, tell her about her day,” Hamilton said.

Lush with hibiscus and sunflowers, lavender and a plum tree, the space is a small oasis where she also can “cry and be angry,” Emma told Stateline.

Hundreds of thousands of other kids are in a similar situation: More than 321,000 children in the U.S. lost a parent to a drug overdose in the decade between 2011 and 2021, according to a study by federal health researchers that was published in JAMA Psychiatry in May.

In recent years, opioid manufacturers, distributors and retailers have paid states billions of dollars to settle lawsuits accusing them of contributing to the overdose epidemic. Some experts and advocates want states to use some of that money to help these children cope with the loss of their parents. Others want more support for caregivers, and special mental health programs to help the kids work through their long-term trauma — and to break a pattern of addiction that often cycles through generations.

The rate of children who lost parents to drug overdoses more than doubled during the decade included in the study, surging from 27 kids per 100,000 in 2011 to 63 per 100,000 in 2021.

Nearly three-quarters of the 649,599 adults between ages 18 and 64 who died during that period were white.

The children of American Indians and Alaska Natives lost a parent at a rate of 187 per 100,000, more than double the rate among the children of non-Hispanic white parents and Black parents (76.5 and 73.2 per 100,000, respectively). Children of young Black parents between ages 18 and 25 saw the greatest loss increase per year, according to the researchers, at a rate of almost 24%. The study did not include overdose victims who were homeless, incarcerated or living in institutions.

The data included deaths from illicit drugs, such as cocaine, heroin or hallucinogens; prescription opioids, including pain relievers; and stimulants, sedatives and tranquilizers. Danielle Stanley, Emma’s mother, had a combination of drugs in her system when she died.

At-risk children

Children need help to get through their immediate grief, but they also need longer-term support, said Chad Shearer, senior vice president for policy at the United Hospital Fund of New York and former deputy director at the Robert Wood Johnson Foundation’s State Health Reform Assistance Network.

An estimated 2.2 million U.S. children were affected by the opioid epidemic in 2017, according to the hospital fund, meaning they were living with a parent with opioid use disorder, were in foster care because of a parent’s opioid use, or had a parent incarcerated due to opioids.

“This is a uniquely at-risk subpopulation of children, and they need kind of coordinated and ongoing services and support that takes into account: What does the remaining family actually look like, and what are the supports that those kids do or don’t have access to?” Shearer said.

Ron Browder, president of the Ohio Federation for Health Equity and Social Justice, an advocacy group, said “respecting the cultural traditions of families” is essential to supporting them effectively. The state has one of the 10 highest overdose death rates in the nation and the fifth-highest number of deaths, according to 2022 data from the U.S. Centers for Disease Control and Prevention.

The goal, Browder said, should be to keep kids in the care of a family member whenever possible.

“We just want to make sure children are not sitting somewhere in a strange room,” said Browder, the former chief for child and adult protection, adoption and kinship at the Ohio Department of Job and Family Services and executive director of the Children’s Defense Fund of Ohio.

“The child has gone through trauma from losing their parent to the overdose, and now you put them in a stranger’s home, and then you retraumatize them.”

This is a particular concern for Indigenous children, who have suffered disproportionate removal from their families and forced cultural assimilation over generations.

“What hits me and hurts my heart the most is that we have another generation of children that potentially are not going to be connected to their culture,” said Danica Love Brown, a behavioral health specialist and member of the Choctaw Nation of Oklahoma. Brown is vice president of behavioral health transformation at Kauffman and Associates, a national tribal health consulting firm.

“We do know that culture is healing, and when people are connected to their culture … when they’re connected to their land and their community, they’re connected to their cultural activities, the healthier they are,” she said.

Ana Beltran, an attorney at Generations United, which supports kin caregivers and grandfamilies, said large families still often need money and counseling to take care of orphaned children. (UNICEF defines an orphan as a child who has lost at least one parent.) She noted that multigenerational households are common in Black, Latino and Indigenous families.

“It can look like they have a lot of support because they have these huge networks, and that’s such a powerful component of their culture and such a cultural strength. But on the other hand, service providers shouldn’t just walk away because, ‘Oh, they’re good,’” she said.

Counties with higher overdose death rates were more likely to have children with grandparents as the primary caregiver, according to a 2023 study from East Tennessee State University. This was particularly true for counties across states in the Appalachian region. Tennessee has the third-highest drug overdose death rate in the nation, following the District of Columbia and West Virginia.

‘Get well’

AmandaLynn Reese, chief program officer at Harm Reduction Ohio, a nonprofit that distributes kits of the opioid-overdose antidote naloxone, lost her parents to the drug epidemic and struggled with addiction herself.

Her mother died from an overdose 10 years ago, when Reese was in her mid-20s, and she lost her dad when she was 8. Her mom was a waitress and cleaned houses, and her dad was an autoworker. Both struggled with prescription opioids, specifically painkillers, as well as illicit drugs.

“Maybe we couldn’t save our mama, but, you know, somebody else’s mama is out there,” Reese said. “Children of loss are left out of the conversation. … This is bigger than the way we were seeing it, and it has long-lasting effects.”

In Ohio, Emma’s grandmother started a small shop called Nina’s Closet, where caregivers or those battling addiction can come by and collect clothing donations and naloxone.

Emma, who helps fill donation boxes, tells her grandmother she misses the scent of her mom’s hair. She couldn’t describe it, Hamilton said — just that “it had a special smell.”

And in an interview with Stateline, Emma said she wants kids like her to have hobbies — “something they really, really like to do” — to distract them from the sadness.

She likes to think of her mom as smiling, remembering how fun she was and how she liked to play pranks on Emma’s grandfather.

“This is what I would say to the users: ‘Get treatment, get well,’” Emma said.

Stateline is part of States Newsroom, a national nonprofit news organization focused on state policy.

©2024 States Newsroom. Visit at stateline.org. Distributed by Tribune Content Agency, LLC.