• .

Céline Gounder, Ñî¹óåú´«Ã½Ò•îl Health News’ editor-at-large for public health, discussed weight loss drugs and covid-19 vaccines on CBS’ “CBS Mornings” on May 22 and May 21, respectively.

Ñî¹óåú´«Ã½Ò•îl Health News senior correspondent Renuka Rayasam discussed end-of-life incarceration on WUGA’s “The Georgia Health Report” on May 16.

• Read Rayasam’s “Prisons Routinely Ignore Guidelines on Dying Inmates’ End-of-Life Choices.”

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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 Ñî¹óåú´«Ã½Ò•îl Health 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 Ñî¹óåú´«Ã½Ò•îl Health 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.

Ñî¹óåú´«Ã½Ò•îl Health News data editor Holly K. Hacker contributed to this report.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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El año pasado, Dorio le explicó a legisladores estatales que el problema era que el hospital tenía derecho a invalidar los deseos de la familia porque el paciente no había hecho un documento de directiva avanzada, ni había designado a alguien con poder notarial. El hospital optó por escuchar a la familia, pero según la ley del estado, los deseos de la familia no tenían peso.

Eso ya no es así. Desde el 1 de enero, California se sumó a otros 45 estados y al Distrito de Columbia con leyes que permiten a una persona tomar decisiones en nombre de un paciente, incluso si no estaba autorizada por el paciente antes de que ocurriera la situación médica.

La lista incluye cónyuges o parejas de hecho, hermanos, hijos y nietos adultos, padres y un pariente adulto o amigo íntimo; y en muchos casos, a las personas que llevaron al paciente para que lo atendieran en un primer momento.

“Los hospitales y las HMO podían usurpar los derechos de las familias y tomar decisiones médicas críticas en virtud de la ley vigente en aquel momento, incluidas las decisiones de desconectar al paciente”, explicó a KHN Dorio, especialista en geriatría de Santa Clarita y miembro de la organización no partidista . “Sabíamos que necesitábamos una ley como la que tienen la mayoría de los otros estados”.

Según datos analizados por , de los adultos estadounidenses tiene o bien instrucciones previas, que detallan lo que quieren sobre su atención médica, o bien un poder médico, que autoriza a otra persona a tomar esas decisiones.

Según sus partidarios, la finalidad detrás de la ley de parentesco es darles facultad a los representantes para que aboguen por los pacientes en lugar de permitir que un hospital tome las decisiones médicas, que pueden estar influenciadas por el costo, las camas disponibles o las presiones de los seguros.

“Esta ley libera de presión a los hospitales, a los que se pide que presten asistencia, salven vidas, se ocupen de Medicare, de los seguros… de muchas cosas a la vez”, afirmó Michele Mann, abogada de Valencia, California, especializada en planificación patrimonial, incluidas las directivas avanzadas.

Los derechos médicos de los pacientes han evolucionado a lo largo de los años, pero es un misterio por qué el estado ha tardado tanto tiempo en aprobar una ley de parentesco. Cuando la California Senior Legislature, que patrocina y promueve leyes destinadas a ayudar a la población de edad avanzada, pidió ayuda a la Oficina del Asesor Legislativo del Estado con el proyecto de ley algunos abogados se sorprendieron de ya no hubiera una ley vigente, dijo Dorio.

Los pacientes que no disponen de un documento de directivas avanzadas o de un poder notarial pueden designar a un sustituto, aunque solo sea declarándolo verbalmente en el hospital, pero, obviamente, es necesario que el paciente esté consciente.

Si un paciente llega a un hospital o centro médico incapacitado o lo está posteriormente, los proveedores deben hacer un esfuerzo de buena fe para encontrar a una persona autorizada a tomar decisiones médicas, según una ley de California en vigor desde 2005.

incluyen revisar las pertenencias del paciente y ponerse en contacto con cualquier persona que el hospital “crea razonablemente que tiene autoridad” para tomar decisiones a través de directivas o de un poder notarial. El hospital debe demostrar que se ha puesto en contacto con el secretario de estado para preguntar si el paciente tenía instrucciones anticipadas.

Con la nueva ley vigente, los proveedores de atención médica deben comprobar si el paciente tiene directivas avanzadas o un poder notarial. Pero una vez que los funcionarios han determinado que no existe ninguno, pueden recurrir a la lista de parientes más próximos, todos los cuales están legalmente autorizados a hablar en nombre del paciente.

“Es innovador”, afirmó Mann, que toma decisiones por su hermana, que tiene esclerosis múltiple y vive en un centro de cuidados de largo plazo. “Con la lista de parientes cercanos, a menudo la persona que trae al paciente es un familiar o un amigo íntimo que conoce claramente los deseos del paciente. En esos casos, se acabó la búsqueda del hospital: hay un representante legalmente autorizado”.

El proyecto de ley , presentado por el asambleísta Mike Gipson, agregó una sección al código de sucesiones, y se asemeja a la forma en que la mayoría de los estados maneja la división de los bienes de una persona después de su muerte.

En California, cuando una persona muere sin dejar testamento, sus bienes y propiedades se distribuyen siguiendo un orden de prioridad fijo y descendiente: primero el cónyuge, después los hijos, los padres, los hermanos, etc. Ahora, las decisiones médicas de una persona se decidirán de la misma manera, pero no necesariamente en el mismo orden.

California otorga a los hospitales y a los proveedores médicos la discreción de decidir qué familiar o amigo íntimo puede tomar decisiones médicas, una disposición introducida en el proyecto de ley después de que la influyente Asociación de Hospitales de California y otros grupos médicos se opusieran a una jerarquía pre establecida.

Algunos expertos se preguntan hasta qué punto será eficaz la nueva ley, ya que los hospitales conservan la facultad de elegir al representante del paciente, sobre todo si hay opiniones encontradas entre los miembros de la familia.

“Aunque no tengo motivos para creer que vayan a abusar del poder, los hospitales pueden decidir quién sería una buena persona para tomar decisiones”, dijo Alexander Capron, experto en derecho médico y ética, y profesor emérito de la Universidad del Sur de California.

Lois Richardson, vicepresidenta y asesora jurídica de la asociación de hospitales, dijo que un orden estricto de sustitutos a menudo no refleja lo que un paciente desearía. “La preocupación siempre ha sido que, en muchos casos, una jerarquía estatutaria estricta no refleja las relaciones familiares reales”, agregó.

El cabildeo de los hospitales abandonó su oposición después de que Gipson accediera a dar flexibilidad al sector, y la medida se aprobó en la legislatura prácticamente sin oposición.

Lo ideal sería que las personas dispusieran de un documento de directivas avanzadas para garantizar el cumplimiento de sus deseos, según Gipson. Pero para las personas mayores, las que viven solas y cualquiera que no tenga este documento, la ley abre el abanico de personas que pueden actuar en su nombre, incluido un amigo íntimo que bien podría ser de familia.

“Al menos así, tienes a alguien que sabe lo que quieres tomando esas decisiones”, indicó Gipson, “en lugar de dejarlo en manos de un hospital”.

Esta historia fue producida por KHN, que publica , un servicio editorialmente independiente de la .

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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 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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There’s no such medical consensus on the answer to another big question: When does human life begin? With the overturning of Roe v. Wade, that question has big implications for health care.

“There has not been the same effort to really define what constitutes the beginning of life,” said KHN senior correspondent Sarah Varney.

Varney shared her reporting with “Science Friday” host Ira Flatow after interviewing experts, including David Magnus, a bioethicist and director of the Stanford Center for Biomedical Ethics.

“Biological occurrences are processes, not events,” Magnus said. “That means deciding where you want to draw lines is a decision to be made, not something to be discovered. So we have to decide where lines make the most sense.”

It can be a complicated decision. 

“When people talk about beginning at the time of conception, do they mean when the sperm first comes in contact with the of the egg cell? Is it when that actual nucleic material, that DNA, actually starts to play a role, which isn’t till a few cell divisions in? Somewhere in that process we call that conception,” Magnus said.

People on all sides of the abortion debate want answers, but some bioethicists said science suggests that conception might be too early a point to consider the onset of personhood.

Ultimately, asking doctors “What is life?” or “What is death?” may miss the point, Magnus said.

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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.

A Boom Industry

With the U.S. population rapidly aging, hospice has become a boom industry. Medicare — the federal insurance program for people 65 and older, which pays for the vast majority of end-of-life care — on hospice in 2020, according to a Medicare Payment Advisory Commission report to Congress. That’s up from $12.9 billion just a decade earlier. The number of hospices billing Medicare over that time grew from less than 3,500 to more than 5,000, according to the report.

But with limited oversight and generous payment, the industry is at high risk for exploitation. Agencies are paid a daily rate for each patient — this year, about $200 — which encourages for-profit hospices to limit spending to boost their bottom lines. For-profit hospices tend to hire than nonprofits and expect them to see more patients.

Many hospice nurses and social workers are booked for 30-minute appointment slots throughout the day, unable to spend more time with patients if needed. For-profit hospices licensed practical nurses than registered nurses, who are more skilled, and rely more on nurse’s aides to further cut costs. found patients in for-profit hospices see doctors or nurse practitioners one-third as often as those in nonprofit hospices. The U.S. in an analysis of federal data from 2014 to 2017 that patients in for-profit hospices were less likely than patients in nonprofit hospices to have received any hospice visits in the last three days of life.

“The main way of making the bottom line look good is decreasing visits,” Teno said.

According to the , for-profit hospices had Medicare profit margins of 19% in 2019, compared with 6% for nonprofit hospices.

For-profit hospices also enroll a different set of patients, preferring those likely to remain in hospice longer. Most costs are incurred in the first and last week of hospice care. Patients who enroll in hospice must undergo several assessments to develop a care plan and set their medications. In their final days, as the body begins to shut down, patients often need additional services or medications to stay comfortable.

“So the sweet spot is kind of in the middle,” said , an assistant professor of population health sciences at Weill Cornell Medical College.

That makes dementia patients particularly profitable. Doctors have a harder time predicting whether a patient with Alzheimer’s disease or another form of dementia has less than six months to live, the eligibility criterion for enrollment. For-profit hospices enroll those patients anyway, Teno said, and stand to profit the longer those patients live. They tend to enroll fewer cancer patients, whose prognosis is generally more predictable but who usually die sooner.

“It is a very simple business model,” Teno said. “Go to assisted living facilities and nursing homes, and it’s one-stop shopping.”

Nonprofit vs. For-Profit

The Rev. Ken Dugger has worked as a chaplain in Denver for 13 years at both for-profit and nonprofit hospices.

At one for-profit hospice, “the word on the street was [that] we were the dementia hospice because we had so many dementia patients,” Dugger said. “We wound up discharging a lot of patients because they had long lengths of stay and no longer met criteria.”

He said about a third of a hospice’s patients die each week, so agencies need to market heavily to replace them. That leads to some hospices making promises to families — such as daily visits from a nurse’s aide — that they can’t keep.

“Some people see dollars and they go, ‘Wow! It’s a great chance to make some money here,’ and they don’t understand that hospice isn’t easy,” Dugger said.

For-profit agencies counter that their nonprofit counterparts have cornered the market on cancer patients and that they are expanding access by serving patients with other diagnoses.

But if patients become too costly, requiring expensive care or medicines, hospice providers can discharge them, and take them to a hospital emergency room to get services the agencies don’t want to pay for themselves, said , former CEO of HopeWest, a nonprofit hospice serving five western Colorado counties.

A by the Milliman consulting firm found that 31% of patients in nonprofits had cancer, while 15% had dementia. At for-profit hospices, 22% of patients had cancer, and 22% had dementia, said the report, funded by the National Partnership of Hospice Innovation, a trade group of nonprofit hospices.

Patients in nonprofits had more nursing, social worker, and therapy visits. For-profit hospices, the report found, had longer lengths of stay by patients, discharged more patients before death, and had profit margins nearly seven times higher.

Other studies have found that for-profit hospices have of complaints and deficiencies, provide fewer community benefits, and have higher rates of emergency room and other hospital use.

Braun said financial pressures are worse for private equity-backed hospices than for other for-profit hospices, partly because of the way hospice acquisitions are financed. A private equity firm will typically put up only 10% to 30% of the acquisition cost itself, borrowing the rest. The acquired hospice not only has to generate profits to satisfy its private equity owners but is stuck with the costs of the loan as well.

Private equity firms typically look to flip their hospice investments in three to seven years.

In 2017, Webster Equity Partners bought Bristol Hospice, with 45 locations in 13 states, for $70 million. Last year, the firm reportedly entertained purchase offers for the hospice chain as high as $1 billion.

Because hospices are inspected every three years, some are bought and sold without a state or federal inspection — and sometimes without regulators even knowing about the sale.

And quality oversight is weak. Hospices have a financial interest in reporting quality metrics to the Centers for Medicare & Medicaid Services, but there is no penalty for poor performance tied to those metrics.

, CEO of the Colorado-based consulting firm National Hospice Analytics, said 17% of Colorado hospices are now owned by private equity, higher than the 13% rate he found nationally. When he looked at metrics reported to Medicare, he found that private equity-backed firms scored lower than average on self-reported quality metrics.

“It’s not a huge difference,” Kassner said. “Because nationally scores are also tight and there’s not a lot of variation, we look at any kind of difference even if it’s a percentage point less.”

Many nonprofits believe private equity-backed and other for-profit hospices are giving the industry a bad name.

“They get paid the same as us, but they don’t take the same patients. They don’t provide the covered services that are supposed to be covered to be paid a per diem,” said Whitney, the former HopeWest CEO, who spoke with KHN before she retired in June. “They’ve developed kind of a shadow business that really has very little to do with the business that I run. But they’re called the same name.”

Larkin, the Charter CEO, bemoaned a lack of progress in quality metrics as the hospice industry has grown. But he said that wasn’t limited to private equity-backed or even for-profit hospice providers.

“There’s bad companies all over,” Larkin said. “There’s people who are misaligned, there’s people who have bad intentions, there’s companies that aren’t focused on the right things.”

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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 ,Ìý 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 videos about health care decisions at .

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

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit  to submit your requests or tips.

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