It was September 2023, and Rigsby, 46, had been brought to Jackson Hospital from an Alabama state prison 10 days earlier after complaining of pain and swelling in his abdomen. Doctors found that untreated hepatitis C had caused irreversible damage to Rigsby’s liver, according to his medical records.

Rigsby decided to stop efforts to treat his illness and to decline lifesaving care, a decision he made with his parents. And Rigsby’s mother, Pamela Moser, tried to get her son released to hospice care through Alabama’s medical furlough policy, so that their family could manage his end-of-life care as they saw fit.

But there wasn’t enough time for the furlough request to be considered.

After learning that Rigsby was on palliative care, the staff at YesCare, a private prison health company that has a $1 billion contract with the Alabama Department of Corrections, told the hospital it would stop paying for his stay and then transferred him back to Staton Correctional Facility in Elmore, according to the hospital record his mom provided to ºÚÁϳԹÏÍø News.

Moser never saw or spoke to her son again.

“The last day I went to see him in the hospital, I was hoping he would take his last breath,” said Moser, a former hospice nurse. “That is how bad I didn’t want him to go to the infirmary” at the prison.

A week later, Rigsby died of liver failure in the infirmary, according to his autopsy report.

Officials at the corrections department and YesCare did not respond to requests for comment.

As the country’s , thousands die behind bars each year. For some researchers, medical providers, and families of terminally ill people in custody, Rigsby’s situation — and Moser’s frustration — are familiar: Incarcerated people typically have little say over the care they receive at the end of their lives.

That’s despite a broad consensus among standards boards, policymakers, and health care providers that terminally ill people in custody should receive treatment that minimizes suffering and allows them to be actively involved in care planning.

But such guidelines aren’t binding. State policies on end-of-life care vary widely, and they generally give much leeway to correctional officers, according to a . The result is that correctional officers and medical contractors make the decisions, and they focus more on security concerns than easing the emotional, spiritual, and physical pain of the dying, say researchers and families.

People in jails and prisons often die while shackled to beds, separated from loved ones, and with minimal pain medication, said Nicole Mushero, a geriatrician at Boston University’s Chobanian & Avedisian School of Medicine who studies and works with incarcerated patients.

“When you’re coming at this from a health care perspective, it’s kind of shocking,” Mushero said.

Security vs. Autonomy

Patients are often suspended or dropped from their health coverage, including commercial insurance or Medicaid, when incarcerated. Jails and prisons have their own systems for providing health care, often funded by state and local budgets, and therefore aren’t subject to the same oversight as other public or private systems.

The , which accredits programs at correctional facilities across the country, says terminally ill people in custody should be allowed to make decisions about treatment options, such as whether to accept life-sustaining care, and appoint a person who can make medical decisions for them.

Jails and prisons should also provide patients with pain medication that wouldn’t otherwise be available to them, allow extra visits with loved ones, and consider them for medical release programs that let them receive hospice care in their communities, said Amy Panagopoulos, vice president of accreditation at the commission. That approach is often at odds with security and safety rules of jails and prisons, so facility leaders may be heavily involved in care decisions, she said.

As a result, the commission plans to release updated standards this summer to provide more details on how facilities should handle end-of-life care to ensure incarcerated patients are more involved in the process.

State laws on medical decision-making, informed consent, and patient privacy apply even to incarcerated patients, said Gregory Dober, who teaches biomedical ethics and is a prison monitor with the Pennsylvania Prison Society, a nonprofit that supports incarcerated patients and their families.

But correctional officers and their medical contractors often prioritize security instead, Dober said.

The Federal Bureau of Prisons allows guards to override do-not-resuscitate orders if they interfere with the security and orderly operation of the institution, according to the .

“This is a wildly understudied area,” said Ben Parks, who teaches medical ethics at Mercy College of Ohio. “In the end, it’s all about the state control of a prisoner’s life.”

About a third of all people who died in federal custody between 2004 and 2022 had a do-not-resuscitate order, according to Bureau of Prisons data obtained by ºÚÁϳԹÏÍø News through a Freedom of Information Act request.

The prison bureau’s policy of forcing CPR on patients is cruel, Parks said. CPR can , with . That is why people sign do-not-resuscitate orders refusing the treatment, he said.

“This is the inversion of the death penalty,” Parks said. “Resuscitation against your will.”

Cut Off From Family

In addition, corrections officials decide whether and when to reach out to a patient’s friends or relatives, said Erin Kitt-Lewis, a Penn State College of Nursing associate research professor who has studied the care of older adults in prisons. As a result, terminally ill people in custody often can’t involve their families in end-of-life care decisions.

That was the case for Adam Spurgeon, who was incarcerated in a state prison in Tennessee, his mother said. One morning in November 2018, Kathy Spurgeon got a call from hospital officials in Nashville saying her son had only hours to live, she said.

About a month earlier, she had learned from her son that he had had heart surgery and developed an infection, she said. But she didn’t know much about his treatment.

Around noon, she arrived at the hospital, about a three-hour drive west of where she lives. Adam, 32, died that evening.

Dorinda Carter, communications director at the Tennessee Department of Correction, declined to comment on Spurgeon’s case. “It is our policy to not comment on an individual inmate’s medical care,” she said in an email.

Kathy Spurgeon said providers who treated Adam outside of prison were too deferential to guards.

And physicians who work with incarcerated patients say that can be the case: Even when terminally ill people in custody are treated at hospitals, correctional officers still end up dictating the terms of care.

Hospital staff members often don’t understand the rights of incarcerated patients and are unsure about state laws and hospital policies, said Pria Anand, a neurologist who has treated incarcerated patients in hospitals. “The biggest problem is uncertainty,” she said.

Correctional officers sometimes tell hospital staffers they can’t contact next of kin for security reasons, or they won’t tell a patient about discharge plans because of worries they might escape, Anand said.

And care frequently takes place within prisons, which often are not equipped to handle the complexities of hospice decision-making, including types of treatment, when to stop treatment, and who can make those decisions, said Laura Musselman, director of communications at the Humane Prison Hospice Project, which provides training and education to improve end-of-life care for incarcerated patients.

“Our prison system was not designed to provide care for anyone, especially not people who are chronically ill, terminally ill, older, actively dying,” said Musselman, who noted that her group’s training has 15 modules to cover all aspects of end-of-life care, including grief support, hands-on caregiving, and paperwork.

Rigsby struggled with mental health and addiction for most of his adult life, including a stint in prison for a drug-related robbery. A parole violation in 2018 landed him back in prison.

At Jackson Hospital, Rigsby was given hydromorphone, a powerful pain medication, as well as the anxiety drug lorazepam. Before he was transferred back to prison, a nurse with YesCare — one of the country’s biggest prison health care providers, which has been sued over substandard care —assured hospital staffers he would be provided with the same level of pain medication and oxygen he had received at the hospital, his medical records show.

But Moser said she doesn’t know whether he spent his last days in pain or peace. The state wouldn’t provide Moser with Rigsby’s medical records from the prison, she said. She said she wasn’t allowed to visit her son in the infirmary — and wasn’t told why.

Moser called the infirmary to comfort her son before his death, but staffers told her he couldn’t make it to the phone and they couldn’t take one to him, she said.

Instead, Moser said, she left messages for prison officials to tell her son she loved him.

“It breaks my heart that he could not talk with his mother during his last days,” said Moser, whose son died on Oct. 4, 2023.

Two weeks later, she drove to Woodstock, Alabama, to collect his remains from a crematorium.

ºÚÁϳԹÏÍø News data editor Holly K. Hacker contributed to this report.

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The problem, Dorio told California lawmakers last year, was the hospital had the right to override the family’s wishes because the patient had not completed an advance directive or designated a power of attorney. The hospital chose to listen to the family, but under state law, his family’s wishes held no weight.

That’s no longer the case. As of Jan. 1, California joined 45 other states and the District of Columbia with next-of-kin laws that designate a surrogate to make decisions on a patient’s behalf — even if that person wasn’t specifically authorized by the patient before the medical situation arose. The list includes spouses or domestic partners, siblings, adult children and grandchildren, parents, and an adult relative or close friend — in many cases, the people who brought in the patient for care in the first place.

“Hospitals and HMOs could usurp the rights of the families to make critical medical decisions under the law that was in place at the time — including decisions on pulling the plug,” Dorio, a geriatrics specialist in Santa Clarita and member of the , told KHN. “We knew we needed a law like most other states have.”

According to data analyzed by , only of U.S. adults have either an advance directive, with which they detail instructions about medical care, or a medical power of attorney, which authorizes someone else to make those decisions.

The idea behind the next-of-kin law, proponents say, is to empower representatives to advocate for patients rather than allow a hospital to make medical decisions, which can be influenced by cost, bed space, or insurance pressures.

“This law takes the pressure off the hospitals, who are being asked to render care, save lives, deal with Medicare, deal with insurance — any number of things all at once,” said Michele Mann, a Valencia, California, attorney who specializes in estate planning, including advance directives.

Patient medical rights have evolved through the years, but it is something of a mystery why the state took so long to put a next-of-kin statute on the books. When the California Senior Legislature, which sponsors and lobbies for laws aimed at helping the state’s older population, approached the state’s Office of the Legislative Counsel for help with the bill, Dorio said, some staff attorneys expressed surprise that such a law wasn’t already in place.

Patients without an advance directive or power of attorney have long been able to designate a surrogate, even if it’s simply by verbally declaring so while at the hospital – but that relies upon the patient being conscious.

If patients arrive at a hospital or medical center incapacitated or later become so, providers must make a good-faith effort to find a person authorized to make medical decisions, according to a California statute in effect since 2005. The going through the patient’s belongings and reaching out to anyone the hospital “reasonably believes has the authority” to make decisions via directive or power of attorney. The hospital must show it has contacted the secretary of state to ask whether the patient had an advance directive.

With the new law in place, health care providers still must check for a patient’s advance directive or power of attorney. But once officials have determined that none exists, they can turn to the next-of-kin list, all of whom are legally authorized to speak for the patient.

“It’s groundbreaking,” said Mann, who makes decisions for her sister, a patient with multiple sclerosis in a long-term care facility. “With the next-of-kin list, often the person who brought the patient in is a family member or close friend with a clear understanding of the patient’s wishes. In those cases, the hospital’s search is over — a legally authorized representative is standing there.”

, introduced by Assembly member Mike Gipson, added a section to the probate code, and it resembles the way most states handle the division of a person’s assets after death. When people in California die without a will, their assets and property are distributed in a fixed, descending order of priority: spouse first, then children, parents, siblings, etc. Now, a person’s medical decisions will be decided in the same way — but not necessarily in the same order.

California gives hospitals and health care providers the discretion to decide which family member or close friend can make medical decisions — a provision inserted into the bill after the influential California Hospital Association and other medical groups opposed a set hierarchy.

Some experts question how effective the new law will be, since hospitals retain the power to pick the patient’s representative, especially if there are conflicting opinions among family members.

“Although I have no reason to believe they would abuse the power, the hospitals get to decide who would be a good decision-maker,” said Alexander Capron, a medical law and ethics expert and professor emeritus at the University of Southern California.

Lois Richardson, a vice president and legal counsel for the hospital association, said a strict order of surrogates often doesn’t reflect what a patient would want. “The concern has always been that having a strict statutory hierarchy, in many, many cases, does not reflect real family relationships,” Richardson said.

The hospital lobby dropped its opposition after Gipson agreed to give the industry flexibility, and the measure passed through the legislature with virtually no opposition.

Ideally, people should have an advance directive to ensure their wishes are followed, Gipson said. But for seniors, those who live alone, and anyone without a stated directive, the law opens the field of people who may be able to advocate on their behalf — including a close friend who might just as well be family.

“At least this way, you have someone who knows what you want making those decisions,” Gipson said, “rather than leaving it up to a hospital.”

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The covid-19 pandemic has spurred a surge in the proportion of Californians who are dying at home rather than in a hospital or nursing home, accelerating a slow but steady rise that dates back at least two decades.

The recent upsurge in at-home deaths started in 2020, the first year of the pandemic, and the rate has continued to climb, outlasting the rigid lockdowns at hospitals and nursing homes that might help explain the initial shift. Nearly 40% of deaths in California during the first 10 months of 2022 took place at home, up from about 36% for all of 2019, according to death certificate data from the California Department of Public Health. By comparison, U.S. Centers for Disease Control and Prevention data shows that about 26% of Californians died at home in 1999, the earliest year for which data on at-home deaths is accessible in the agency’s public database.

The trend is amplified among California residents with serious chronic conditions. About 55% of Californians who died of cancer did so at home during the first 10 months of 2022, compared with 50% in 2019 and 44% in 1999. About 43% of Californians who died of Alzheimer’s disease in the first 10 months of 2022 did so at home, compared with 34% in 2019 and nearly 16% in 1999.

Nationwide, the share of deaths occurring at home also jumped in 2020, to 33%, then rose to nearly 34% in 2021. Nationwide data for 2022 is not yet available.

Covid’s early, deadly sweep across California does not in itself explain the increase in at-home death rates; the vast majority of people who have died of covid died in a hospital or nursing home. Instead, medical experts said, the surge — at least initially — appears to coincide with sweeping policy changes in hospitals and nursing homes as caregivers struggled to contain a virus both virulent and little understood.

The sweeping bans on in-person visitation in hospitals and nursing homes, even to the bedsides of dying patients, created an agonizing situation for families. Many chose to move a loved one back home. “It was devastating to have Mom in a nursing home and dying, and the only way you can see Mom is through the window,” said , a registered nurse who has written extensively about end-of-life care.

At the same time, fears of covid exposure led many people to avoid hospitals in the first years of the pandemic, in some cases neglecting treatment for other serious conditions. That, too, is thought to have contributed to the rise in at-home deaths.

Those who specialize in end-of-life care say it is no surprise the trend has continued even as visitation policies have eased. They said more people simply want to die in a comfortable, familiar place, even if it means not fighting for every second of life with medical interventions.

“Whenever I ask, ‘Where do you want to be when you breathe your last breath? Or when your heart beats its last beat?’ no one ever says, ‘Oh, I want to be in the ICU,’ or ‘Oh, I want to be in the hospital,’ or ‘I want to be in a skilled nursing facility.’ They all say, ‘I want to be at home,’” said , coordinator for the advance care planning program at Sharp HealthCare in San Diego.

Meanwhile, the physicians who specialize in the diseases that tend to kill Americans, such as cancer and heart disease, have become more accepting of discussing home hospice as an option if the treatment alternatives likely mean painful sacrifices in quality of life.

“There’s been a little bit of a culture change where maybe oncologists, pulmonologists, congestive heart failure physicians are referring patients to palliative care earlier to help with symptom management, advanced care planning,” said , associate medical director for hospice at UC Davis Health.

The trends have created a booming industry. In 2021, the California Department of Health Care Access and Information listed 1,692 licensed hospice agencies , a leap from the 175 agencies it listed in 2002.

That much growth — and the money behind it — has sometimes led to problems. A by the Los Angeles Times found that fraud and quality-of-care issues were common in California’s hospice industry, a conclusion bolstered by a . Gov. Gavin Newsom that placed a temporary moratorium on most new hospice licenses and sought to rein in questionable kickbacks to doctors and agencies.

When done correctly, though, home hospice can be a comfort to families and patients. Hospice typically lasts anywhere from a few days to a few months, and while services vary, many agencies provide regular visits from nurses, health aides, social workers, and spiritual advisers.

Most people using hospice are insured through the federal Medicare program. The amount Medicare pays varies by region but is usually around $200 to $300 a day, said , chief medical officer at the nonprofit .

To find quality end-of-life care, , a professor at Wayne State University and author of “,” recommends seeking out nonprofit providers and having a list of questions prepared: How often will nurses visit in person? In what circumstances do patients have access to a physician? What help will be available for a crisis in the middle of the night?

While hospice providers offer crucial guidance and support, families need to be prepared to shoulder the bulk of the caregiving. “It really takes a pretty evolved family system to be able to rally to meet all of the needs,” said Tastad at Sharp HealthCare.

Several end-of-life experts said they expect the proportion of Californians choosing to die at home to keep climbing, citing a variety of factors: Medical advances will make it easier for patients to receive pain management and other palliative care at home; telemedicine will make it easier for patients to consult doctors from home; and two powerful forces in American health care — insurance companies and the federal government — increasingly see dying at home as an affordable alternative to lengthy hospital stays.

Phillip Reese is a data reporting specialist and an assistant professor of journalism at California State University-Sacramento.

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After decades of deliberations involving physicians, bioethicists, attorneys, and theologians, a U.S. presidential commission in 1981 settled on a scientifically derived dividing line between life and death that has endured, more or less, ever since: A person was considered dead when the entire brain — including the brainstem, its most primitive portion — was no longer functioning, even if other vital functions could be maintained indefinitely through artificial life support.

In the decades since, the committee’s criteria have served as a foundation for laws in most states adopting brain death as a standard for legal death.

Now, with the overturning of Roe v. Wade and dozens of states rushing to impose abortion restrictions, American society is engaged in a chaotic race to define the other pole of human existence: When exactly does human life begin? At conception, the hint of a heartbeat, a first breath, the ability to survive outside the womb with the help of the latest technology?

That we’ve been able to devise and apply uniform clinical standards for when life ends, but not when it begins, is due largely to the legal and political maelstrom around abortion. And in the two months since the U.S. Supreme Court issued its opinion in Dobbs v. Jackson Women’s Health Organization, eliminating a long-standing federal right to abortion, state legislators are eagerly bounding into that void, looking to codify into law assorted definitions of life that carry profound repercussions for abortion rights, birth control, and assisted reproduction, as well as civil and criminal law.

“The court said that when life begins is up to whoever is running your state — whether they are wrong or not, or you agree with them or not,” said Mary Ziegler, a law professor at the University of California-Davis who has written several books on the history of abortion.

Unlike the debate over death, which delved into exquisite medical and scientific detail, the legislative scramble to determine when life’s building blocks reach a threshold that warrants government protection as human life has generally ignored the input of mainstream medical professionals.

Instead, red states across much of the South and portions of the Midwest are adopting language drafted by elected officials that is informed by conservative Christian doctrine, often with little scientific underpinning.

A handful of Republican-led states, including Arkansas, Kentucky, Missouri, and Oklahoma, have passed laws declaring that life begins at fertilization, a contention that opens the door to a host of pregnancy-related litigation. This includes wrongful death lawsuits brought on behalf of the estate of an embryo by disgruntled ex-partners against physicians and women who end a pregnancy or even miscarry. (One such in Arizona. Another reached the Alabama Supreme Court.)

In Kentucky, the law outlawing abortion uses morally explosive terms to define pregnancy as “the human female reproductive condition of having a living unborn human being within her body throughout the entire embryonic and fetal stages of the unborn child from fertilization to full gestation and childbirth.”

Several other states, including Georgia, have adopted measures equating life with the point at which an embryo’s nascent cardiac activity can be detected by an ultrasound, at around six weeks of gestation. Many such laws mischaracterize the flickering electrical impulses detectible at that stage as a heartbeat, including in Georgia, whose Department of Revenue recently announced that “any unborn child with a detectable human heartbeat” can be claimed as a dependent.

The Supreme Court’s 1973 decision in Roe v. Wade that established a constitutional right to abortion did not define a moment when life begins. The opinion, written by Justice Harry Blackmun, observed that the Constitution does not provide a definition of “person,” though it extends protections to those born or naturalized in the U.S. The court majority made note of the many disparate views among religions and scientists on when life begins, and concluded it was not up to the states to adopt one theory of life.

Instead, Roe intended to balance a pregnant woman’s right to make decisions about her body with a public interest in protecting potential human life. That decision and a key ruling that followed generally recognized a woman’s right to abortion up to the point medical professionals judge a fetus viable to survive outside the uterus, at about 24 weeks of gestation.

In decisively overturning Roe in June, the Supreme Court’s conservative majority drew on legal arguments that have shaped another contentious end-of-life issue. The legal standard employed in Dobbs — that there is no right to abortion in the federal Constitution and that states can decide on their own — is the same rationale used in 1997 when the Supreme Court said terminally ill people did not have a constitutional right to medically assisted death. That decision, Washington v. Glucksberg, is mentioned 15 times in the majority opinion for Dobbs and a concurrence by Justice Clarence Thomas.

Often, the same groups that have led the fight to outlaw abortion have also challenged medical aid-in-dying laws. Even after Dobbs, so-called right-to-die laws remain far less common than those codifying state abortion rights. Ten states allow physicians to prescribe lethal doses of medicine for terminally ill patients. Doctors are still prohibited from administering the drugs.

James Bopp, general counsel for the National Right to Life Committee who has been central to the efforts to outlaw abortion, said that both abortion and medically assisted death, which he refers to as physician-assisted suicide, endanger society.

“Every individual human life has inherent value and is sacred,” said Bopp. “The government has the duty to protect that life.”

Both issues raise profound societal questions: Can the government keep a patient on life support against his wishes, or force a woman to give birth? Can states bar their own residents from going to other states to end a pregnancy, or prohibit out-of-state patients from coming in to seek medically assisted death? And who gets to decide, particularly if the answer imposes a singular religious viewpoint?

Just as there are legal implications that flow from determining a person’s death, from organ donation to inheritance, the implied rights held by a legally recognized zygote are potentially vast. Will death certificates be issued for every lost pregnancy? Will miscarriages be investigated? When will Social Security numbers be issued? How will census counts be tallied and congressional districts drawn?

Medical professionals and bioethicists caution that both the beginning and end of life are complicated biological processes that are not defined by a single identifiable moment — and are ill suited to the political arena.

“Unfortunately, biological occurrences are not events, they are processes,” said David Magnus, director of the Stanford Center for Biomedical Ethics.

Moreover, asking doctors “What is life?” or “What is death?” may miss the point, said Magnus: “Medicine can answer the question ‘When does a biological organism cease to exist?’ But they can’t answer the question ‘When does a person begin or end?’ because those are metaphysical issues.”

Ben Sarbey, a doctoral candidate in Duke University’s department of philosophy who studies medical ethics, echoed that perspective, recounting the Paradox of the Heap, a thought experiment that involves placing grains of sand one on top of the next. The philosophical quandary is this: At what point do those grains of sand become something more — a heap?

“We’re going to have a rough time placing a dividing line that this counts as a person and this does not count as a person,” he said. “Many things count as life — a sperm counts as life, a person in a persistent vegetative state counts as life — but does that constitute a person that we should be protecting?”

Even as debate over the court’s abortion decision percolates, the 1981 federal statute that grew out of the presidential committee’s findings, the Uniform Determination of Death Act, is also under review. This year, the Uniform Law Commission, a nonpartisan group of legal experts that drafts laws intended for adoption in multiple states, has taken up the work to revisit the definition of death.

The group will consider sharpening the medical standards for brain death in light of advances in the understanding of brain function. And they will look to address lingering questions raised in recent years as families and religious groups have waged heated legal battles over terminating artificial life support for patients with no brain wave activity.

Bopp, with the National Right to Life Committee, is among those serving on advisory panels for the effort, along with an array of doctors, philosophers, and medical ethicists. The concept of “personhood” that infuses the anti-abortion movement’s broader push for fetal rights is expected to be an underlying topic, albeit in mirror image: When does a life form cease being a person?

Magnus, who is also serving on an advisory panel, has no doubt the commission will reach a consensus, a sober resolution rooted in science. What’s less clear, he said, is whether in today’s political environment that updated definition will hold the same sway, an enduring legal standard embraced across states.

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That rapid growth has many hospice veterans worried that the original hospice vision may be fading, as those capital investment companies’ demand for return on investment and the debt load they force hospices to bear are hurting patients and their families.

“Many of these transactions are driven by the motive of a quick profit,” said Dr. , an adjunct professor at Brown University School of Public Health, whose work has focused on end-of-life care. “I’m very concerned that you’re harming not only the dying patient, but the family whose memory will be of a loved one suffering because they didn’t get adequate care.”

According to a , the number of hospice agencies owned by private equity firms soared from 106 of a total of 3,162 hospices in 2011 to 409 of the 5,615 hospices operating in 2019. Over that time, 72% of hospices acquired by private equity were nonprofits. And those trends have only accelerated into 2022.

Hospice is an easy business to start, with most care provided at home and using lower-cost health workers. That allowed the entry of smaller hospices, many launched with the intent of selling within a few years. Private equity firms, backed by deep-pocketed investors, could then snatch up handfuls of smaller hospices, cobble together a chain, and profit from economies of scale in administrative and supply costs, before selling to an even larger chain or another private equity firm.

Private equity-owned hospice companies counter that their model supports growth through investment, which benefits the people in their care.

“Private equity sees a huge opportunity to take smaller businesses that lack sophistication, lack the ability to grow, lack the capital investment, and private equity says, ‘We can come in there, cobble these things together, get standardization, get visibility and be able to create a better footprint, better access, and more opportunities,’” said , a hospice chain owned by the private equity firm Pharos Capital Group.

But he acknowledged that not all of those entering the hospice market have the best intentions.

“It is a little scary,” he said. “There are people that have no business being in health care” looking to invest in hospice.

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The Murphys’ house in a leafy Nashville neighborhood is their happy place — full of their treasures.

“He’s good to me — buys me anything I want,” she said, as she pulled a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.

Willie bought Mary the display case to help her to show off the trinkets she picks up at estate sales.

Down the hall, Willie was lying in their bed, now unable to speak. His heart was giving out.

“You gonna wake up for a minute?” she asked, cradling his head. She patted his back while he cleared his throat. “Cough it out.”

Mary had been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville focused on increasing the use of end-of-life comfort care by Black families. is owned and operated by people who share the same cultural background as the patients they aim to serve.

In their to obtain a certificate of need in Tennessee, the hospice owners made it clear they are Black and intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data shows that in Nashville just 19% of hospice patients are Black although they make up 27% of the capital city’s population.

Though the area already had numerous hospice agencies, regulators granted Heart and Soul permission to operate, based primarily on the value of educating an underserved group.

In Murphy’s first hospice experience, her mother had been living with dementia for decades. Still, Murphy had concerns about transitioning her mother to hospice. She felt as if she was giving up on her mom.

“My first thought was death,” she said.

National data shows that Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with 54% of white patients, according to compiled annually by the National Hospice and Palliative Care Organization.

Murphy’s mother survived nearly three years on hospice. The benefit is meant for those in the final six months of life, but predicting when the end will come is difficult, especially in cases of dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.

Murphy did most of the caregiving — which can be overwhelming — but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.

And most important to Murphy was the emotional support, which came mostly from her hospice nurse.

“Wasn’t no doctor going to come here, hold my hand, stay here until the funeral home came for her,” she said about the day her mother died.

Last year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She’d already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn’t breathing.

“If you don’t feel like, ‘Oh my God, thank God I have hospice,’ if you can’t say that, then we’re doing something wrong,” said Keisha Mason, Heart and Soul’s director of nursing.

Mason, like Murphy, is Black and said that in her view there’s nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it’s basically free to patients — paid for by Medicare, Medicaid and most private health plans.

“I say to them, ‘If you see a bill, then call us, because you should not,'” she said.

As Mason helped launch this new hospice agency, she began using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.

“Just as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit,” she said.

The investors in Heart and Soul include , owner of CNS Hospice in Detroit; Nashville pastor the Rev. ; and André Lee, a former hospital administrator on the campus of Meharry Medical College, a historically Black institution in Nashville.

Lee and Turner also started a Black-focused agency in Michigan and have plans to replicate the model in other states.

More families need to consider home hospice as an alternative for end-of-life care, Lee said. Nursing homes are pricey. And even with Medicare, a hospital bill can be hefty.

“You’ll go in there and they’ll eat you alive,” he said. “I hate to say [something] bad about hospitals, but it’s true.”

Hospice research hasn’t come up with clear reasons to explain the gap between white and Black families’ use of the benefit. Some experts speculate it’s related to spiritual beliefs and widespread mistrust in the medical system due to decades of discrimination.

The hospice industry’s national trade group, the NHCPO, released a diversity and inclusion and a to reaching more Black patients. It recommends connecting with influential DJs, partnering with Black pastors and simply hiring more Black nurses.

Bridging the gap is not overly complicated, Lee said.

“A lot of hospices don’t employ enough Black people,” he said. “We all feel comfortable when you see someone over there that looks like you.”

Well-established hospice agencies have attempted to minimize barriers with their own . Michelle Drayton of Visiting Nurse Service of New York said her large agency has met with ministers who counsel families dealing with failing health.

“Many of them did not fully understand what hospice was,” she said. “They had many of the same sort of misperceptions.”

Every hospice company, whether it’s an upstart or one of the nation’s oldest, can promote end-of-life education and ease care disparities, Drayton said. “We’re not just handing out a brochure,” she added.

This story is part of a partnership that includes ,  and KHN.

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Now, a group of prominent experts is saying those efforts should stop because they haven’t improved end-of-life care.

“Decades of research demonstrate advance care planning doesn’t work. We need a new paradigm,” said Dr. R. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York and a co-author of a advancing this argument in JAMA.

“A great deal of time, effort, money, blood, sweat and tears have gone into increasing the prevalence of advance care planning, but the evidence is clear: It doesn’t achieve the results that we hoped it would,” said Dr. Diane Meier, founder of the Center to Advance Palliative Care, a professor at Mount Sinai and co-author of the opinion piece. Notably, advance care planning has not been shown to ensure that people receive care consistent with their stated preferences — a major objective.

“We’re saying stop trying to anticipate the care you might want in hypothetical future scenarios,” said Dr. James Tulsky, who is chair of the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute in Boston and collaborated on the article. “Many highly educated people think documents prepared years in advance will protect them if they become incapacitated. They won’t.”

The reasons are varied and documented in dozens of research studies: People’s preferences change as their health status shifts; forms offer vague and sometimes conflicting goals for end-of-life care; families, surrogates and clinicians often disagree with a patient’s stated preferences; documents aren’t readily available when decisions need to be made; and services that could support a patient’s wishes — such as receiving treatment at home — simply aren’t available.

But this critique of advance care planning is highly controversial and has received considerable pushback.

Advance care planning has evolved significantly in the past decade and the focus today is on conversations between patients and clinicians about patients’ goals and values, not about completing documents, said Dr. Rebecca Sudore, a professor of geriatrics and director of the Innovation and Implementation Center in Aging and Palliative Care at the University of California-San Francisco. This progress shouldn’t be discounted, she said.

Also, anticipating what people want at the end of their lives is no longer the primary objective. Instead, helping people make complicated decisions when they become seriously ill has become an increasingly important priority.

When people with serious illnesses have conversations of this kind, “our research shows they experience less anxiety, more control over their care, are better prepared for the future, and are better able to communicate with their families and clinicians,” said Dr. Jo Paladino, associate director of research and implementation for the Serious Illness Care Program at Ariadne Labs, a research partnership between Harvard and Brigham and Women’s Hospital in Boston.

Advance care planning “may not be helpful for making specific treatment decisions or guiding future care for most of us, but it can bring us peace of mind and help prepare us for making those decisions when the time comes,” said Dr. J. Randall Curtis, 61, director of the Cambia Palliative Care Center of Excellence at the University of Washington.

Curtis and I communicated by email because he can no longer speak easily after being diagnosed with amyotrophic lateral sclerosis, an incurable neurologic condition, early in 2021. Since his diagnosis, Curtis has had numerous conversations about his goals, values and wishes for the future with his wife and palliative care specialists.

“I have not made very many specific decisions yet, but I feel like these discussions bring me comfort and prepare me for making decisions later,” he told me. Assessments of advance care planning’s effectiveness should take into account these deeply meaningful “unmeasurable benefits,” Curtis wrote recently in JAMA in about his experiences.

The emphasis on documenting end-of-life wishes dates to a seminal legal case, , decided by the Supreme Court in June 1990. Nancy Cruzan was 25 when her car skidded off a highway and she sustained a severe brain injury that left her permanently unconscious. After several years, her parents petitioned to have her feeding tube removed. The hospital refused. In a 5-4 decision, the Supreme Court upheld the hospital’s right to do so, citing the need for “clear and convincing evidence” of an incapacitated person’s wishes.

Later that year, Congress passed the , which requires hospitals, nursing homes, home health agencies, health maintenance organizations and hospices to ask whether a person has a written “advance directive” and, if so, to follow those directives to the extent possible. These documents are meant to go into effect when someone is terminally ill and has lost the capacity to make decisions.

But too often this became a “check-box” exercise, unaccompanied by in-depth discussions about a patient’s prognosis, the ways that future medical decisions might affect a patient’s quality of life, and without a realistic plan for implementing a patient’s wishes, said Meier, of Mount Sinai.

She noted that only 37% of adults have completed written advance directives — in her view, a sign of uncertainty about their value.

Other problems can compromise the usefulness of these documents. A patient’s preferences may be inconsistent or difficult to apply in real-life situations, leaving medical providers without clear guidance, said Dr. Scott Halpern, a professor at the University of Pennsylvania Perelman School of Medicine who studies end-of-life and palliative care.

For instance, an older woman may indicate she wants to live as long as possible and yet also avoid pain and suffering. Or an older man may state a clear preference for refusing mechanical ventilation but leave open the question of whether other types of breathing support are acceptable.

“Rather than asking patients to make decisions about hypothetical scenarios in the future, we should be focused on helping them make difficult decisions in the moment,” when actual medical circumstances require attention, said Morrison, of Mount Sinai.

Also, determining when the end of life is at hand and when treatment might postpone that eventuality can be difficult.

Morrison spoke of his alarm early in the pandemic when older adults with covid-19 would go to emergency rooms and medical providers would implement their advance directives (for instance, no CPR or mechanical ventilation) because of an assumption that the virus was “universally fatal” to seniors. He said he and his colleagues witnessed this happen repeatedly.

“What didn’t happen was an informed conversation about the likely outcome of developing covid and the possibilities of recovery,” even though most older adults ended up surviving, he said.

For all the controversy over written directives, there is strong support among experts for another component of advance care planning — naming a health care surrogate or proxy to make decisions on your behalf should you become incapacitated. Typically, this involves filling out a .

“This won’t always be your spouse or your child or another family member: It should be someone you trust to do the right thing for you in difficult circumstances,” said Tulsky, who co-chairs a roundtable on care for people with serious illnesses for the National Academies of Sciences, Engineering and Medicine.

“Talk to your surrogate about what matters most to you,” he urged, and update that person whenever your circumstances or preferences change.

Most people want their surrogates to be able to respond to unforeseen circumstances and have leeway in decision-making while respecting their core goals and values, Sudore said.

Among tools that can help patients and families are Sudore’s program; materials from the , and ; and videos about health care decisions at .

The Centers for Disease Control and Prevention also has a comprehensive .

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But after 18 cancer-free months, the disease returned with a vengeance in June 2003. It fractured her bones and invaded her spinal canal, bathing her brain in malignancy.

During the final six months, as she lay on her home hospice bed in constant pain, attached to a morphine drip around-the-clock while losing her eyesight and withering to a skeleton, the idea of ending her suffering by ending her life didn’t even enter into our conversations.

I’ve been thinking a lot about those bleak days while looking into California’s , which allows terminally ill patients with a life expectancy of less than six months to end their lives by taking medications prescribed by a physician. In October, Gov. Gavin Newsom signed a of the law, extending it to January 2031 and loosening some restrictions in the 2015 version that proponents say have become barriers to dying people who wish to avail themselves of the law.

The original law, which remains in effect until Jan. 1, contains numerous safeguards meant to ensure that patients are not being coerced by family members who view them as a burden or a potential financial bonanza.

Under the current law, patients who want to die must make two oral requests for the medications at least 15 days apart. They also must request the drugs in writing, and two doctors must agree the patients are legally eligible. After receiving the medications, patients must confirm their intention to die by signing a form 48 hours before ingesting them.

The patients must take the drugs without assistance, either orally, rectally or through a feeding tube. And physicians can decline to prescribe the death-inducing drugs.

After the law had been in effect for a while, its proponents and practitioners concluded that some safeguards made the option unavailable to certain patients.

Some patients were so sick they died during the 15 days they were required to wait between their first and second requests for the medications. Others were too weak or disoriented to sign the final attestation.

The revised law reduces the 15-day waiting period to just two days and eliminates the final attestation.

It also requires health care facilities to post their aid-in-dying policies online. Doctors who decline to prescribe the drugs — whether on principle or because they don’t feel qualified — are obliged to document the patient’s request and transfer the record to any other doctor the patient designates.

The most important part of the new law, advocates say, is the shortening of the waiting period.

, an assistant clinical professor specializing in palliative medicine at National Medical Center in Duarte, California, says she’s seen many patients who were afraid to broach the subject of their own death until they were very close to the end.

“By the time they made that first request and then had to wait for those 15 days, they either became completely nondecisional or went into a coma or passed away,” Banerjee says.

Amanda Villegas, 30, of Ontario, California, became an outspoken advocate for updating the law after watching her husband, Chris, die an agonizing death from metastatic bladder cancer in 2019.

When the couple asked about the possibility of a physician-assisted death, Villegas says, staff at the Seventh-day Adventist hospital where Chris was being treated told them, inaccurately, that it was illegal. When he finally made a request for death-inducing drugs, it was too late: He died before the 15-day waiting period was up.

The new law “will open doors for people who might … experience the same roadblocks,” Villegas says. “When you are dying, the last thing you need is to go through bureaucratic barriers to access peace.”

Medical aid in dying straddles the same political fault line as abortion and has long been opposed by many religious institutions and anti-abortion groups. It has also encountered resistance from that claim it belittles the lives of those who are physically dependent on others.

“We object to the whole idea of a state providing a vehicle for people to kill themselves,” says Alexandra Snyder, CEO of the Life Legal Defense Foundation, an anti-abortion nonprofit law firm. The 15-day waiting period, she says, provided an important cooling-off period for patients to reflect on a decision that is irreversible. “Now, any safeguards that were in the law are gone.”

Proponents of the law say they haven’t seen evidence that a patient’s decision to take the life-ending medications has ever been anything other than voluntary.

Though neither version of the law requires a medical professional to be present when a patient takes the drugs, medical standards encourage professional participation in the dying process, says Dr. Lonny Shavelson, chair of the American Clinicians Academy on Medical Aid in Dying. The drugs should be kept at the pharmacy until the patient is ready to ingest them, he says — though that doesn’t always happen.

From the time the aid-in-dying law took effect in June 2016 through Dec. 31, 2020, just under two-thirds of the 2,858 people who received prescriptions actually took the medications and died, according to the from the California Department of Public Health. The rest died before they could take the drugs or found other ways to manage their pain and emotional distress.

Most major commercial health plans — including Kaiser Permanente, Anthem Blue Cross, Blue Shield of California and Health Net — cover aid-in-dying drugs and the related doctor visits, as does Medi-Cal, the government-run health insurance program for people with low incomes.

However, more than 60% of those who take the drugs are on Medicare, which does not cover them. Effective life-ending drug combinations are available for as little as $400.

If you are contemplating aid in dying, here are some resources to learn more about it:

• Compassion & Choices, 1-800-247-7421 or
• The California Department of Public Health, (click “programs”)
• The American Clinicians Academy on Medical Aid in Dying,
• End of Life Choices California, or 1-760-636-8009

Talk to your doctor sooner rather than later if you are considering medically assisted death, in case you’ll need to seek a different physician’s help. If your doctor agrees to help, the law requires that he or she discuss other end-of-life options with you, including hospice and palliative care.

Whatever choice a patient makes, being more open about our mortality is important, says state Sen. Susan Eggman (D-Stockton), the author of the revised aid-in-dying law.

“We should all have more conversations about life and death and what we want and don’t want and what is a peaceful death,” she says. “We are all going to die.”

Leslie and I had plenty of those conversations, until the cancer ultimately robbed her of her mind.

In her final months, she would often sink into a semiconscious state, far out of our reach for days on end. Then, just when we thought she wasn’t coming back, she would suddenly open her eyes and ask for the children. She’d get into her wheelchair and join us at the dinner table.

Those periods, which we called “awakenings,” were a source of great comfort to everyone who loved Leslie — but especially to the kids, who were relieved and overjoyed to have their mommy back.

Though I’ll never know for sure, I suspect Leslie would not have wanted to foreclose on such moments.

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This has been a year like none other for Dr. Rebecca Elon, who has dedicated her professional life to helping older adults.

It’s taught her what families go through when caring for someone with serious illness as nothing has before. “Reading about caregiving of this kind was one thing. Experiencing it was entirely different,” she told me.

Were it not for the challenges she’s faced during the coronavirus pandemic, Elon might not have learned firsthand how exhausting end-of-life care can be, physically and emotionally — something she understood only abstractly previously as a geriatrician.

And she might not have been struck by what she called the deepest lesson of this pandemic: that caregiving is a manifestation of love and that love means being present with someone even when suffering seems overwhelming.

All these experiences have been “a gift, in a way: They’ve truly changed me,” said Elon, 66, a part-time associate professor at Johns Hopkins University School of Medicine and an adjunct associate professor at the University of Maryland School of Medicine.

Elon’s uniquely rich perspective on the pandemic is informed by her multiple roles: family caregiver, geriatrician and policy expert specializing in long-term care. “I don’t think we, as a nation, are going to make needed improvements [in long-term care] until we take responsibility for our aging mothers and fathers — and do so with love and respect,” she told me.

Elon has been acutely aware of prejudice against older adults — and determined to overcome it — since she first expressed interest in geriatrics in the late 1970s. “Why in the world would you want to do that?” she recalled being asked by a department chair at Baylor College of Medicine, where she was a medical student. “What can you possibly do for those [old] people?”

Elon ignored the scorn and became the first geriatrics fellow at Baylor, in Houston, in 1984. She cherished the elderly aunts and uncles she had visited every year during her childhood and was eager to focus on this new specialty, which was just being established in the U.S. “She’s an extraordinary advocate for elders and families,” said Dr. Kris Kuhn, a retired geriatrician and longtime friend.

In 2007, Elon was named geriatrician of the year by the American Geriatrics Society.

Her life took an unexpected turn in 2013 when she started noticing personality changes and judgment lapses in her husband, Dr. William Henry Adler III, former chief of clinical immunology research at the National Institute on Aging, part of the federal National Institutes of Health. Proud and stubborn, he refused to seek medical attention for several years.

Eventually, however, Adler’s decline accelerated and in 2017 a neurologist diagnosed frontotemporal dementia with motor neuron disease, an immobilizing condition. Two years later, Adler could barely swallow or speak and had lost the ability to climb down the stairs in their Severna Park, Maryland, house. “He became a prisoner in our upstairs bedroom,” Elon said.

By then, Elon had cut back on work significantly and hired a home health aide to come in several days a week.

In January 2020, Elon enrolled Adler in hospice and began arranging to move him to a nearby assisted living center. Then, the pandemic hit. Hospice staffers stopped coming. The home health aide quit. The assisted living center went on lockdown. Not visiting Adler wasn’t imaginable, so Elon kept him at home, remaining responsible for his care.

“I lost 20 pounds in four months,” she told me. “It was incredibly demanding work, caring for him.”

Meanwhile, another crisis was brewing. In Kankakee, Illinois, Elon’s sister, Melissa Davis, was dying of esophageal cancer and no longer able to care for their mother, Betty Davis, 96. The two had lived together for more than a decade and Davis, who has dementia, required significant assistance.

Elon sprang into action. She and two other sisters moved their mother to an assisted living facility in Kankakee while Elon decided to relocate a few hours away, at a continuing care retirement community in Milwaukee, where she’d spent her childhood. “It was time to leave the East Coast behind and be closer to family,” she said.

By the end of May, Elon and her husband were settled in a two-bedroom apartment in Milwaukee with a balcony looking out over Lake Michigan. The facility has a restaurant downstairs that delivered meals, a concierge service, a helpful hospice agency in the area and other amenities that relieved Elon’s isolation.

“I finally had help,” she told me. “It was like night and day.”

Previously bedbound, Adler would transfer to a chair with the help of a lift (one couldn’t be installed in their Maryland home) and look contentedly out the window at paragliders and boats sailing by.

“In medicine, we often look at people who are profoundly impaired and ask, ‘What kind of quality of life is that?’” Elon said. “But even though Bill was so profoundly impaired, he still had a strong will to live and retained the capacity for joy and interaction.” If she hadn’t been by his side day and night, Elon said, she might not have appreciated this.

Meanwhile, her mother moved to an assisted living center outside Milwaukee to be nearer to Elon and other family members. But things didn’t go well. The facility was on lockdown most of the time and staff members weren’t especially attentive. Concerned about her mother’s well-being, Elon took her out of the facility and brought her to her apartment in late December.

For two months, she tended to her husband’s and mother’s needs. In mid-February, Adler, then 81, took a sharp turn for the worse. Unable to speak, his face set in a grimace, he pounded the bed with his hands, breathing heavily. With hospice workers’ help, Elon began administering morphine to ease his pain and agitation.

“I thought, ‘Oh, my God, is this what we ask families to deal with?’” she said. Though she had been a hospice medical director, “that didn’t prepare me for the emotional exhaustion and the ambivalence of giving morphine to my husband.”

Elon’s mother was distraught when Adler died 10 days later, asking repeatedly what had happened to him and weeping when she was told. At some point, Elon realized her mother was also grieving all the losses she had endured over the past year: the loss of her home and friends in Kankakee; the loss of Melissa, who’d died in May; and the loss of her independence.

That, too, was a revelation made possible by being with her every day. “The dogma with people with dementia is you just stop talking about death because they can’t process it,” Elon said. “But I think that if you repeat what’s happened over and over and you put it in context and you give them time, they can grieve and start to recover.”

“Mom is doing so much better with Rebecca,” said Deborah Bliss, 69, Elon’s older sister, who lives in Plano, Texas, and who believes there are benefits for her sister as well. “I think having [Mom] there after Bill died, having someone else to care for, has been a good distraction.”

And so, for Elon, as for so many families across the country, a new chapter has begun, born out of harsh necessities. The days pass relatively calmly, as Elon works and she and her mother spend time together.

“Mom will look out at the lake and say, ‘Oh, my goodness, these colors are so beautiful,’” Elon said. “When I cook, she’ll tell me, ‘It’s so nice to have a meal with you.’ When she goes to bed at night, she’ll say, ‘Oh, this bed feels so wonderful.’ She’s happy on a moment-to-moment basis. And I’m very thankful she’s with me.”

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After two years of being sick, Heim’s dad got the diagnosis in 2019: stage 4 kidney cancer. His physician offered treatments that might extend his life by months. Instead, the 81-year-old asked the doctor for help dying. Heim said her parents left the appointment in their hometown of Billings with two takeaways: The legality of medically assisted death was questionable in Montana, and her father’s physician didn’t seem willing to risk his career to put that question to the test.

“My parents knew when they left there that was the end of that conversation,” said Heim, now 54. “My dad was upset and mad.”

The day after the appointment, Heim’s mother went grocery shopping. While she was gone, Heim’s dad went to the backyard and fatally shot himself. (Heim asked that her father’s name not be published due to the lingering stigma of suicide.)

About a decade earlier, in 2009, the Montana Supreme Court had, in theory, cracked open the door to sanctioned medically assisted death. The court ruled physicians could if charged with homicide for prescribing life-ending medication.

However, the ruling sidestepped whether terminally ill patients have a constitutional right to that aid. Whether that case made aid in dying legal in Montana has been debated ever since. “There is just no right to medical aid in dying in Montana, at least no right a patient can rely on, like in the other states,” said former state Supreme Court Justice Jim Nelson. “Every time a physician does it, the physician rolls the dice.”

Every session of the biennial Montana state legislature since then, a lawmaker has proposed a bill to formally criminalize physician-assisted death. Those who back the bills say the aid is morally wrong while opponents say criminalizing the practice would be a backstep for patients’ rights. But so far, lawmakers haven’t gained enough support to pass any legislation on the issue, though it has been close. stalled on March 1, on a split vote.

Even the terminology to describe the practice is disputed. Some say it’s “suicide” anytime someone intentionally ends their life. Others say it’s “death with dignity” when choosing to expedite a painful end. Such debates have gone on for decades. But Montana remains the sole state stuck in a legal gray zone, even if the practice can still seem taboo in many states with clear laws. Such continued uncertainty makes it especially hard for Montana patients like Heim’s dad and their doctors to navigate what’s allowed.

“Doctors are risk-averse,” said Dr. , director of the health law program at the University of Nevada-Las Vegas, who helped write clinical aid-in-dying published in the Journal of Palliative Medicine in 2016. “The fear of being sued or prosecuted is still there.”

Despite that, access to medical aid in dying is gaining momentum across the U.S. Outside Montana, eight states and the District of Columbia allow the life-ending aid — six of them since 2014. So far in 2021, legislators in at least have pushed aid-in-dying bills, most seeking to legalize the practice and some seeking to drop barriers to existing aid such as expanding which medical professionals can offer it. Many are repeat legalization efforts with some, like in New York, dating as far back as 1995. Only the Montana bill this year specifically sought to criminalize it.

North Dakota considered legislation to legalize medically assisted death for the first time. Rep. , a Democrat from Fargo who proposed the measure after hearing from a cancer patient, said she wasn’t surprised when the bill failed in February in . The state’s medical association said it was “.” Angry voters called Anderson asking why she wanted to kill people.

“But I heard from just as many people that this was a good bill,” Anderson said. “There is momentum to not let this concept go away.”

Back in Montana, now retired state Supreme Court Justice Nelson said he has always regretted joining the majority in the case that allowed the practice because the narrow ruling focused on physicians’ legal defense, not patients’ rights. Having watched a friend die slowly from disease, Nelson, 77, wants the choice himself if ever needed.

Despite — or because of — the court decision, some Montana doctors do today feel that they can accommodate such patient decisions. For example, Dr. , a hospice and palliative care physician, said until she retired from private practice last year she considered patients’ requests for life-ending drugs.

Physicians who help in such cases follow well-established guidelines set by other states, Kirchhoff said. A patient must have six months or less to live — a fact corroborated by a second physician; can’t be clinically depressed; needs to ask for the aid; and be an adult capable of making health care decisions, which is determined by the attending physician. They must also administer the life-ending medication themselves.

“You’re obviously not going to do a case that is vague or nebulous or has family discord,” Kirchhoff said. “The doctors who are prescribing have felt comfortable and that they’re doing the right thing for their patient, alleviating their suffering.” Of her few patients who qualified for a prescription, she said, none actually took the drugs. Kirchhoff noted that, in some cases, getting the prescription seemed to provide comfort to her patients — it was enough knowing they had the option if their illness became unbearable.

For the past six legislative sessions — dating to 2011 — a Montana lawmaker has proposed a bill to clarify that state law doesn’t allow physician-assisted death. Republican Sen. picked up that effort the past two sessions. Glimm said the current status, based on the more than decade-old court decision, sends a mixed message in a state that the Centers for Disease Control and Prevention as having among the nation’s highest suicide rates. Glimm said allowing someone to end their life because of pain from a terminal illness could normalize suicide for people living with depression, which is also a form of pain.

“It’s really hard because I do sympathize with them,” Glimm said. “What it boils down to is, if you’re going to take your own life, then that’s suicide.”

, president and CEO of national nonprofit Compassion & Choices, said the comparison to suicide is frustrating. “People who are seeking medical aid in dying want to live, but they are stricken with a life-ending illness,” she said.

Glimm and his bill’s supporters say that some patients could be pressured into it by family members with something to gain, and doctors could prescribe it more often than they should.

But Callinan, whose group advocates for aid in dying, said that since Oregon first legalized it in 1997, no data has shown any merit to the warnings about abuse and coercion. showed no evidence of heightened risk of abuse within the practice for vulnerable populations such as the elderly. But critics have said states aren’t doing enough to track the issue.

By now, Leslie Mutchler, 60, knows most of the people on all sides of the debate after years of testifying in support of protecting aid in dying. Her dad, Bob Baxter, was a plaintiff in the case that eventually led to the 2009 Montana Supreme Court decision on medically assisted death. After leukemia whittled his body for years, he died in 2008 without the option, the same day a lower court ruled in his favor.

Mutchler said she didn’t understand how complicated the Supreme Court’s ultimate ruling was until her son TJ was diagnosed with terminal metastatic pancreatic cancer in 2016.

He was 36 and lived in Billings, Montana. By then, the 6-foot-5 man had lost 125 pounds off what had been a 240-pound frame. He couldn’t keep food down and needed a feeding tube for medicine and water. TJ Mutchler wanted to have the choice his grandfather never got. But when he went to his physician and asked for aid in dying, the response was it wasn’t legal. Eventually, Mutchler found a doctor to evaluate her son and write the prescriptions for phenobarbital and amitriptyline. TJ took the drugs more than two months later and died.

“People contact me asking how to find someone and it’s difficult,” Mutchler said. “That’s why people end up taking matters into their own hands.” Research into terminally ill populations is limited, but published in 2019 found the risk of someone with cancer taking their own life is four times higher than the general population.

For Roberta King, another one of Baxter’s daughters, the ongoing fight over aid in dying in Montana means she knows every other winter she’ll make the more than 200-mile round trip from her Missoula home to the state capital. King, 58, has testified against all six bills that sought to ban aid in dying following her dad’s case. She memorized a speech about how her dad became so thin after his medicine stopped working that it hurt for him to sit.

“It’s still terrible, you still have to get up there in front of everybody and they know what you’re going to say because it’s the same people doing the same thing,” King said. But skipping a hearing doesn’t feel like an option. “If something were to happen to this and I didn’t try, I would never forgive myself,” she said.

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