Acostada e inmóvil sobre una mesa plegable que hacía las veces de cama, Dunnebacke se quejaba de dolor en las piernas. La enfermera Ana Kanellos, enrollando dos pequeñas toallas blancas, mostró cómo elevarle los tobillos para aliviarle el dolor.

“¿Las piernas de mamá siempre están hinchadas? Entonces, levántaselas”, dijo Kanellos.

Unas 20 personas, residentes de Nueva Orleans, escuchaban con atención, interesadas en aprender más sobre cómo cuidar a seres queridos en casa cuando se acercan al final de sus vidas.

Alix Vargas, una de las asistentes, dijo que antes le aterraba la idea de morir. Pero hace unos tres años, la muerte de una prima muy cercana la impulse a participar en talleres grupales de escritura, lo que la ayudó a enfrentar su duelo y superar ese miedo.“Siento un fuerte llamado hacia este trabajo”, dijo. “Definitivamente es un conocimiento que quería adquirir y ampliar mi mente en ese sentido. Y además, es algo que todos vamos a experimentar en nuestras vidas”.

El taller la hizo pensar en una vecina cuya madre tiene demencia.“Inmediatamente pensé: ‘Ok, hay alguien en mi entorno cercano que está viviendo esto’”, recordó Vargas. “‘Esto es una forma práctica de poner en acción la ayuda mutua’”.

La demanda de atención médica en casa, incluyendo los cuidados paliativos domiciliarios, se ha disparado desde el inicio de la pandemia de covid, al igual que el número de personas que cuidan a familiares.

Según realizada por AARP y la Alianza Nacional de Cuidadores (National Alliance for Caregiving), se calcula que 63 millones de personas en el país —casi una cuarta parte de los adultos— brindaron cuidados a otra persona con una condición médica o discapacidad, por lo general otro adulto, el año anterior.

En los últimos 10 años, unas 20 millones de personas más han asumido este rol de cuidadoras.

Se estima que casi 1 de cada 5 personas en Estados Unidos tendrá 65 años o más para 2030, por lo que expertos en salud pronostican que la necesidad de cuidadores en el hogar seguirá creciendo.

Hay numerosos recursos en línea sobre cuidados al final de la vida, pero la capacitación práctica para preparar a personas cuidadoras no es tan accesible, y puede ser costosa. Aun así, familiares sin entrenamiento están asumiendo tareas de enfermería y atención médica.

Durante su campaña presidencial de 2024, Donald Trump prometió más apoyo para las personas cuidadoras, incluyendo un nuevo crédito fiscal para quienes cuidan a familiares. Respaldó un proyecto de ley que fue reintroducido en el Congreso este año y que permitiría otorgar créditos fiscales de hasta $5.000 a cuidadores familiares, pero la legislación no ha avanzado.

Mientras tanto, los recortes a Medicaid previstos en la ley republicana conocida como One Big Beautiful Bill Act, que el presidente Trump firmó en julio, podrían llevar a que algunos estados reconsideren su participación en programas opcionales de Medicaid, como el que ayuda a cubrir los . Esto podría hacer que morir en casa sea aún menos accesible para familias de bajos ingresos, según investigadores y defensores.

Activistas como Osha Towers tratan de ayudar a los cuidadores a navegar esta incertidumbre. Towers lidera el trabajo comunitario en LGBTQ+ en Compasión y Opciones (), una organización nacional que busca mejorar los cuidados, la preparación y la educación sobre el final de la vida.“Es sin duda algo muy aterrador, pero lo que sí sabemos que podemos hacer ahora es simplemente estar presentes para cada persona, y asegurarnos de que sepan qué necesitan para estar preparadas”, afirmó Towers.

En Nueva Orleans, una , que se enfoca en apoyar a familiares que brindan cuidados al final de la vida y en el momento de la muerte, es una de las que busca llenar ese vacío de conocimiento.

Wake organizó el taller gratuito de tres días en septiembre donde Dunnebacke, fundadora del grupo, simuló ser una paciente moribunda. Estos talleres buscan preparar a las personas para saber qué esperar cuando un ser querido está muriendo y cómo cuidarlo, incluso sin ayuda profesional costosa. Los cuidados domiciliarios a tiempo completo son poco comunes.“No se necesita ninguna formación especial para hacer este trabajo”, señaló Dunnebacke. “Solo se necesitan algunas habilidades y apoyos para poder hacerlo”.

En cierto modo, la evolución de los cuidados al final de la vida en Estados Unidos en el último siglo han vuelto a cómo era en el pasado. No fue sino hasta la década de 1960 que la mayoría de las personas comenzaron a morir en hospitales, residencias de mayores e instituciones de cuidados paliativos, en lugar de en casa.

Aunque estas instituciones pueden ofrecer atención médica avanzada inmediata y cuidados paliativos, a menudo carecen de la conexión humana que proporciona el cuidado en el hogar, según Laurie Dietrich, gerente de programas de Wake.

Ahora, más personas quieren morir en sus casas, rodeadas de su familia, pero con el apoyo y la tecnología que ofrecen las instalaciones médicas modernas.

En la última década, las doulas del final de la vida o matronas de la muerte —personas que brindan apoyo no médico y emocional a las personas moribundas y sus seres queridos— se han vuelto más populares como una forma de acompañar en ese proceso y llenar ese vacío.

Douglas Simpson, director ejecutivo de la Asociación Internacional de Doulas del Final de la Vida (), dijo que su organización reconoce la falta de recursos sobre cuidados durante la muerte, por lo que está capacitando a doulas para que actúen como educadoras comunitarias. Espera que estas doulas sean especialmente útiles en comunidades rurales y que promuevan conversaciones sobre la muerte.“Se trata de lograr que las personas se sienta más abiertas y cómodas para hablar sobre la muerte y reflexionar sobre su propia mortalidad”, dijo Simpson.

La capacitación como doula de la muerte varía según la organización, pero el grupo de Simpson se enfoca en enseñar sobre el proceso de morir, cómo respetar la autonomía de la persona que está muriendo y cómo las doulas deben cuidar de sí mismas mientras cuidan de otros.

Algunas personas que participaron en el taller de Wake ya habían recibido algún tipo de formación como doula de la muerte. Después de que la madre de Nicole Washington fue asesinada en 2023, ella consideró convertirse en doula. Pero pensó que la capacitación, que puede costar entre $800 y $3.000, era demasiado clínica e impersonal, en contraste con el enfoque comunitario de Wake.“Me siento con mucha energía, muy animada”, aseguró Washington. “Y también es muy reconfortante compartir con personas que están familiarizadas con la muerte y el duelo”

Susan Nelson, de Ochsner Health, quien ha trabajado como geriatra por 25 años, dijo que se necesitan más programas especializados como el de Wake para capacitar y preparar a las personas cuidadoras.“Aprender habilidades para cuidar a otros suele ser, lamentablemente, una experiencia de prueba y error”, añadió Nelson.

Compasión y Opciones también busca educar a personas cuidadoras. Towers explicó que la formación de la organización abarca desde la planificación anticipada hasta actuar como representante de atención médica y brindar cuidados durante la etapa final.“En este país nos hemos alejado de los cuidados al final de la vida de una forma en la que antes no lo hacíamos”, dijo Towers.

Towers señaló que este movimiento para cuidar a las personas en casa y brindarles apoyo comunitario tiene sus raíces en la epidemia de VIH/sida, cuando algunos médicos a personas con VIH. Amistades, especialmente dentro de la , comenzaron a organizar la entrega de alimentos, visitas, vigilias al pie de la cama e incluso círculos de contacto, donde los pacientes recibían gestos de consuelo como tomarse de las manos para aliviar el dolor y la sensación de aislamiento.

“Me gusta verlo como un modelo de lo que podemos volver a hacer hoy: priorizar el cuidado comunitario”, dijo Towers.

Este artículo se produjjo ​​en colaboración con . La reportera de Verité News, Christiana Botic, colaboró ​​con este informe.

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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Dunnebacke lay still atop a folding table that was dressed as a bed, complaining that her legs hurt. Registered nurse Ana Kanellos, rolling up two small white towels, demonstrated how to elevate her ankles to ease the pain.

“ Mom’s legs are always swollen? Raise ’em up,” Kanellos said.

About 20 New Orleans residents listened intently, eager to learn more about how to care for loved ones at home when they’re nearing the end of their lives. Attendee Alix Vargas said she used to be terrified of dying. But about three years ago, a close cousin’s death led her to attend group writing workshops, helping her embrace her grief and conquer her fear.

“ I’m feeling very called towards this work,” she said. “It’s definitely knowledge that I wanted to obtain and expand my mind in that way. And this is also something that we’re all going to encounter in our lives.”

The workshop made her think about a neighbor whose mother has dementia.

“ I was immediately thinking, ‘OK, there’s someone in my immediate orbit that is experiencing this,’” Vargas recalled. ‘“Here’s a practical way to put the mutual aid in use.’”

Demand for home health care, including at-home hospice care, has skyrocketed since the onset of the covid pandemic, as has the number of family caregivers. An estimated 63 million people in the U.S. — nearly a quarter of all American adults — provided care over the previous year to another person with a medical condition or disability, usually another adult, according to by AARP and the National Alliance for Caregiving. In the past 10 years, about 20 million more people have served as caregivers.

With nearly 1 in 5 Americans expected to be 65 or older by 2030, health care experts predict the demand for at-home caregivers will continue to rise. Online resources for end-of-life care are widely available, but hands-on training to prepare people to become caregivers is not, and it can be expensive. Yet untrained family members-turned-caregivers are taking on nursing and medical tasks.

Donald Trump promised more support for caregivers during his 2024 campaign, including a pledge to create new tax credits for those caring for family members. He endorsed a bill reintroduced in Congress this year that would allow family caregivers to receive tax credits of up to $5,000, but the legislation hasn’t moved forward.

Meanwhile, the Medicaid cuts expected from Republicans’ One Big Beautiful Bill Act, which President Trump signed in July, could prompt states looking to offset their added expenses to reconsider participating in optional state Medicaid programs, such as the one that helps pay for . That would threaten to make dying at home even more unaffordable for low-income families, said advocates and researchers.

Advocates like Osha Towers are trying to help caregivers navigate the uncertainty. Towers leads LGBTQ+ engagement at , a national organization that focuses on improving end-of-life care, preparation, and education.

“It is certainly very scary, but what we know we can do right now is be able to just show up for all individuals to make sure that they know what they need to be prepared for,” Towers said.

In New Orleans, a , which focuses on supporting family caregivers providing end-of-life and death care, is one of the organizations trying to help fill the knowledge gap. Wake put on the free, three-day September workshop where Dunnebacke, the group’s founder, pretended to be a dying patient. Such workshops are aimed at preparing attendees for what to expect when loved ones are dying and how to care for them, even without costly professional help. Full-time at-home care is rare.

“You don’t have to have any special training to do this work,” Dunnebacke said. “You just need some skills and some supports to make that happen.”

In some ways, the evolution of end-of-life care in the U.S. over the past century has come full circle. It was only starting in the 1960s that people shifted from dying at home to dying in hospitals, nursing homes, and hospice facilities.

Such institutions can provide immediate advanced medical support and palliative care for patients, but they often lack the human connection that home care provides, said Laurie Dietrich, Wake’s programs manager.

Now, more people want to die in their homes, among family, but with the support and technology that comes with modern medical facilities.

In the past decade, death doulas — who support the nonmedical and emotional needs of the dying and their loved ones — have grown in popularity to help guide people through the dying process, helping to fill that gap. Douglas Simpson, executive director of the , said his organization recognizes the lack of resources for death care, so it is training doulas to be community educators. He hopes doulas can be especially useful in rural communities and lead conversations about dying.

“Making people more open, more comfortable about talking about death and considering their mortality,” Simpson said.

Death doula training varies depending on the organizer, but Simpson’s group focuses on teaching attendees about the dying process, how to maintain the autonomy of the dying person, and how to be aware of how they show up to a job and take care of themselves while caring for others.

Some people who attended Wake’s workshop had also attended some form of death doula training in the past. After Nicole Washington’s mother was killed in 2023, she considered becoming a death doula. But she thought the doula training, which can cost $800 to $3,000, was clinical and impersonal, as opposed to Wake’s community-based approach.

“I feel very energized, very uplifted,” Washington said. “It’s also really nice to be in a space with people who are familiar with death and grief.”

Ochsner Health’s Susan Nelson, who has worked as a geriatrician for 25 years, said there is a need for more specialized programs to train and prepare caregivers, like Wake’s.

“Learning caregiving skills is probably, unfortunately, more trial by fire,” Nelson said.

Compassion & Choices is another organization trying to educate caregivers. Towers said the group’s training ranges from advanced planning to acting as a health care proxy to caring for the dying.

“We’ve gone to a place in our country where we’re so removed from end-of-life care in a way that we didn’t used to be,” Towers said.

Towers said the movement to care for people at home and give them community support has roots in the AIDS epidemic, when some doctors for AIDS patients. Friends, especially in the , started coordinating food delivery, visits, bedside vigils, and even touch circles, where patients could receive comforting forms of touch such as hand-holding to ease pain and feelings of isolation.

“I like to look at it as a blueprint for what we can get back to doing now, which is again just prioritizing community care,” Towers said.

This article was produced in collaboration with . Verite News reporter Christiana Botic contributed to this report.

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Forget a lunch break; she often eats a sandwich or some nuts as she heads to her next patient visit.

On a gloomy Friday in January, Johnson, a nurse practitioner who treats older adults, had a hospice consult with Ellen, a patient in her 90s in declining health. To protect Ellen’s identity, Ñî¹óåú´«Ã½Ò•îl Health News is not using her last name.

“Hello. How are you feeling?” Johnson asked as she entered Ellen’s bedroom and inquired about her pain. The blinds were drawn. Ellen was in a wheelchair, wearing a white sweater, gray sweatpants, and fuzzy socks. A headband was tied around her white hair. As usual, the TV was playing loudly in the background.

“It’s fine, except this cough I’ve had since junior high,” Ellen said.

Ellen had been diagnosed with vascular dementia, peripheral vascular disease, and Type 2 diabetes. Last fall, doctors made the difficult decision to operate on her foot. Before the surgery, Ellen was always colorful, wearing purple, yellow, blue, pink, and chunky necklaces. She enjoyed talking with the half dozen other residents at her adult family home in Washington state. She had a hearty appetite that brought her to the breakfast table early. But lately, her enthusiasm for meals and socializing had waned.

Johnson got down to eye level with Ellen to examine her, assessing her joints and range of motion, checking her blood pressure, and listening to her heart and lungs.

Carefully, Johnson removed the bandage to examine Ellen’s toes. Her lower legs were red but cold to the touch, which indicated her condition wasn’t improving. Ellen’s two younger sisters had power of attorney for her and made it clear that, above all, they wanted her to be comfortable. Now, Johnson thought it was time to have that difficult conversation with them about Ellen’s prognosis, recommending her for hospice.

“Our patient isn’t just the older adult,” Johnson said. “It’s also often the family member or the person helping to manage them.”

Nurse practitioners are having those conversations more and more as their patient base trends older. They are increasingly filling a gap that is expected to widen as the senior population explodes and the number of geriatricians declines. The Health Resources and Services Administration in demand for geriatricians from 2018 to 2030, when the entire baby boom generation will be older than 65. By then, hundreds of geriatricians are expected to retire or leave the specialty, reducing their number to fewer than 7,600, with relatively few young doctors joining the field.

That means many older adults will be relying on other primary care physicians, who already , and nurse practitioners, whose ranks are booming. The number of nurse practitioners specializing in geriatrics has more than tripled since 2010, increasing the availability of care to the current population of seniors, a in JAMA Network Open found.

According to a , of the roughly 431,000 licensed nurse practitioners, 15% are, like Johnson, certified to treat older adults.

Johnson and her husband, Dustin, operate an NP-led private practice in greater Seattle, Washington, a state where she can practice independently. She and her team, which includes five additional nurse practitioners, each try to see about 10 patients a day, visiting each one every five to six weeks. Visits typically last 30 minutes to an hour, depending on the case.

“There are so many housebound older adults, and we’re barely reaching them,” Johnson said. “For those still in their private homes, there’s such a huge need.”

Laura Wagner, a professor of nursing and community health systems at the University of California-San Francisco, stressed that nurse practitioners are not trying to replace doctors; they’re trying to meet patients’ needs, wherever they may be.

“One of the things I’m most proud of is the role of nurse practitioners,” she said. “We step into places where other providers may not, and geriatrics is a prime example of that.”

Practice Limits

Nurse practitioners are registered nurses with advanced training that enables them to diagnose diseases, analyze diagnostic tests, and prescribe medicine. Their growth has bolstered primary care, and, like doctors, they can specialize in particular branches of medicine. Johnson, for example, has advanced training in gerontology.

“If we have a geriatrician shortage, then hiring more nurse practitioners trained in geriatrics is an ideal solution,” Wagner said, “but there are a lot of barriers in place.”

In 27 states and Washington, D.C., nurse practitioners can practice independently. But in the rest of the country, they need to have a collaborative agreement with or be under the supervision of another health care provider to provide care to older adults. Medicare generally reimburses for nurse practitioner services at it pays physicians.

Last year, in , the American Medical Association and its partners lobbied against what they see as “scope creep” in the expanded roles of nurse practitioners and other health workers. The AMA points out that doctors must have more schooling and significantly more clinical experience than nurse practitioners. While the AMA says keep costs lower, a study published in 2020 in found similar patient outcomes and lower costs for nurse practitioner patients. Other studies, including one in the journal Medical Care Research and Review, have found health care models including nurse practitioners had better outcomes for patients with multiple chronic conditions than teams without an NP.

Five states have granted NPs full practice authority since 2021, with Utah the most recent state to , in 2023. In March, however, , which would have increased NP independence, failed. Meanwhile, rallied to tamp down full-scope efforts in Austin.

“I would fully disagree that we’re invading their scope of practice and shouldn’t have full scope of our own,” Johnson said.

She has worked under the supervision of physicians in Pennsylvania and Washington state but started seeing patients at her own practice in 2021. Like many nurse practitioners, she sees her patients in their homes. The first thing she does when she gets a new patient is manage their prescriptions, getting rid of unnecessary medications, especially those with harsh side effects.

She works with the patient and a family member who often has power of attorney. She keeps them informed of subtle changes, such as whether a person was verbal and eating and whether their medical conditions have changed.

While there is some overlap in expertise between geriatricians and nurse practitioners, there are areas where nurses typically excel, said Elizabeth White, an assistant professor of health services, policy, and practice at Brown University.

“We tend to be a little stronger in care coordination, family and patient education, and integrating care and social and medical needs. That’s very much in the nursing domain,” she said.

That care coordination will become even more critical as the U.S. ages. Today, about 18% of the U.S. population is 65 or over. In the next 30 years, the share of seniors is expected to reach 23%, as medical and technological advances enable people to live longer.

Patient and Family

In an office next to Ellen’s bedroom, Johnson called Ellen’s younger sister Margaret Watt to recommend that Ellen enter hospice care. Johnson told her that Ellen had developed pneumonia and her body wasn’t coping.

Watt appreciated that Johnson had kept the family apprised of Ellen’s condition for several years, saying she was a good communicator.

“She was accurate,” Watt said. “What she said would happen, happened.”

A month after the consult, Ellen died peacefully in her sleep.

“I do feel sadness,” Johnson said, “but there’s also a sense of relief that I’ve been with her through her suffering to try to alleviate it, and I’ve helped her meet her and her family’s priorities in that time.”

Jariel Arvin is a reporter with the at the University of California-Berkeley Graduate School of Journalism. He reported this article through a grant from .

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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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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When Garner entered the gates at Louisiana State Penitentiary in Angola, Louisiana, he didn’t know what to expect. The maximum security facility has been dubbed “America’s Bloodiest Prison” and its brutal conditions have made headlines for decades.

“Sometimes when you’re in a dark place, you find out who you really are and what you wish you could be,” Garner said. “Even in darkness, I could be a light.”

It wasn’t until five years later that Garner would get his chance to show everyone he wasn’t the hardened criminal they thought he was. When the prison warden, Burl Cain, decided to start the nation’s first prison hospice program, Garner volunteered.

In helping dying inmates, Garner believed he could claw back some meaning to the life he had nearly squandered in the heat of the moment. For the next 25 years, he cared for his fellow inmates, prisoners in need of help and compassion at the end of their lives.

The Angola program started by Cain, with the help of Garner and others, has since become a model. Today at least 75 of the more than 1,200 state and federal penal institutions nationwide have implemented formal hospice programs. Yet as America’s prison population ages, more inmates are dying behind bars of natural causes and few prisons have been able to replicate Angola’s approach.

Garner hopes to change that. But first he had to redeem himself.

‘Life Means Life’

Garner, the son of a longshoreman, was born and raised in New Orleans as one of seven kids who kept their mother busy at home. He attended Catholic primary school and played football at Booker T. Washington High School. After graduating, Garner worked for a garbage collection company, then for an ice cream manufacturer, testing deliveries of milk to make sure they hadn’t been watered down.

None of that experience would help him at Angola, where violence seemed to be everywhere. Garner remembered the endless stream of ambulances rolling through the prison gates.

“All day long: Somebody has gotten stabbed, somebody had gotten into a bad fight, blood everywhere,” he said.

Cain arrived at Angola in 1995, three years into Garner’s life sentence. In 1997, the warden came across a newspaper article about a hospice program in Baton Rouge, the state capital.

“I realized that if we did hospice, I wouldn’t have to do that rush at the end of life. We wouldn’t have to put them in an ambulance and send them to the hospital,” Cain said. “We could let them die in peace and not have to do all that.”

At first, the prison’s medical staff objected, worried about the cost. But Cain put his foot down. He hired a hospice nurse to run the program, and inmates would provide the day-to-day care at no cost.

Cain sought volunteers and funding from what he called the prison’s “clubs and organizations” — the Aryan Brotherhood, the Black Panthers, as well as the religious congregations within the prison walls. “All of y’all one day are going to be in hospice,” he said he told them.

It was no exaggeration. In Louisiana, as the saying goes, life means life, with no chance of parole. And at that time, 85% of those sent to Angola would die there, according to Cain and others.

“We buried more people a year than we released out the front gate,” Cain said.

Many serving life sentences no longer had family outside the prison walls, and for those who did, their families often could not afford to pay for a funeral or burial spot. So, the prison would bury the bodies at Angola. When the first cemetery was filled, the prison established another.

Initially, inmates were buried in cardboard boxes. But during one funeral, the body fell out of the box onto the ground. Cain vowed that would never happen again and instructed inmates working in carpentry to learn to make wooden caskets. The prison then provided caskets for any inmate in Louisiana whose body was not claimed by their family. The late Rev. Billy Graham and his wife were buried in two made at Angola.

Cain saw the hospice program as part of his approach of rehabilitation through morality and Christian principles. Cain started a seminary program at Angola, had the prisoners build several churches on its grounds, and considered hospice “the icing on the cake.”

The Early Days

Garner had never heard of hospice.

He was among the first 40 volunteers at the prison, hand-picked for their clean disciplinary records and trained by two social workers from a New Orleans hospital in 1998.

Isolation cells were remade to serve as hospice rooms. The volunteers repainted the walls and draped curtains to hide the wire mesh covering the windows. They brought in nightstands and tables, TVs, and air conditioning.

Soon, it became clear the prison would have to change its rules to accommodate hospice. Before the program existed, inmates weren’t allowed to touch each other. They couldn’t even assist someone out of a wheelchair.

“They would actually push them into a room and wait on the nurse or doctor or somebody else to assist them,” Garner said. “They would die alone. They had nobody to talk to them, other than nurses and doctors making their rounds. They really didn’t have nobody that they could relate to.”

The volunteers were issued hospice T-shirts that allowed them free movement through the prison. Cain made it clear to the correctional officers and the staff that if someone was wearing that shirt, it was like hearing directly from the warden.

“He had to rewrite policies so everything that a hospice program can do in society, that program can do as well inside corrections,” Garner said.

The primary rule of the hospice program was that no one would die alone. When death was imminent, the hospice volunteers conducted a vigil round-the-clock.

The program used medications, including opioids, for the palliative care of patients, though the inmate volunteers were not allowed to administer them.

The first hospice patient Garner saw die was a man the prisoners called Baby. Standing just 4-foot-5, he was sought out by other inmates for his self-taught legal expertise. In 1998, as Baby was dying from cirrhosis, a disease of the liver, inmates rushed in to get his advice one last time.

“So many people wanted to see him, we just didn’t have enough room to take everybody in,” Garner said. “We used to have to do increments of 10 guys or whatever.”

Baby had taken care of everybody else. Now it was their time to take care of him.

Most of the hospice volunteers were serving life sentences, and many, like Garner, had taken someone’s life to get there. But holding a man’s hand as he took his last breath provided a new perspective.

“We all don’t know much about death, only what we see through the eyes of somebody who was going through that transition,” Garner said. “It was new to me, because I didn’t understand it in its entirety until I got into the program.”

The hospice volunteers became the conduit for inmates to get messages to their dying friends.

But more importantly, they functioned as confidants, giving dying inmates a last chance to get something off their chest.

“You become their hands, you become their eyes, you become their feet, you become their thinking sometimes,” Garner said. “They’re so vulnerable to where you actually have to be so mindful and careful to carry out their will.”

In a place where people prey on weakness, hospice volunteers shared in each patient’s vulnerability. Instead of assaulting, they assisted. Instead of sowing conflict, they spread peace.

“Just a touch makes a big difference, when a person can’t see or a person can’t hear,” Garner said.

‘What About Quilting?’

As the years passed, hospice deaths became more prevalent, with two to three inmates dying a week. The prison population was graying, and not just at Angola. According to , from 1991 to 2021, the percentage of state and federal inmates 55 and older grew from 3% to 15%. And in 2020, 30% of those serving life sentences were at least 55 years old.

Throughout the 2000s, the Angola hospice saw increasing deaths from cancer, hepatitis C, and AIDS. But mostly, the patients’ bodies were wearing out. Most had come from low-income backgrounds and arrived at Angola in less-than-optimal health. Prison took a further toll, accelerating aging and exacerbating chronic conditions.

The hospice volunteers tried to grant the dying inmates’ often modest last requests: fresh fruit, a peanut butter and jelly sandwich, some potato chips.

“A bag of chips, to people in society, it’s like, ‘Oh man, that ain’t it,’” Garner said. “But to somebody that has a taste for it or for somebody that’s about to pass away, their wanting is everything.”

But those wishes cost money. In 2000, the prison volunteers were brainstorming ways to make the program self-sufficient.

“What about quilting?” suggested Tanya Tillman, the hospice nurse.

The room fell silent, Garner recalled. The volunteers looked around nervously.

“That was not something that a male inmate wanted to hear,” Garner said.

But the other “clubs and organizations,” as Cain called the inmate groups, were also raising money through fundraisers. They needed something that would stand out, something they would have no competition over.

“And so we voted,” Garner said. “Quilting it was.”

None of the men had quilted before. Some women came to teach them the basics, but mostly they learned through trial and error.

“I just put a sewing machine in front of me,” Garner said. “I knew all the do’s and don’ts, but I didn’t know how to take and cut fabric, and put fabric together, and make it make sense.”

They auctioned off their first quilt at the , a biannual event in which prisoners compete in traditional rodeo events. It attracts people from all over the world.

At one point, Garner and his team were making 125 or more quilts a year: throws, kings, and queens.

“Within five years, we was on the front cover of Minnesota Alumni magazine,” Garner said, referencing the University of Minnesota Alumni Association’s publication. “In 2007, we were on another front cover, Imagine Louisiana magazine, and then in 10 years, we was in documentaries with Oprah Winfrey,” Garner said.

The Oprah Winfrey Network profiled the prison hospice program in 2011 in a documentary titled “Serving Life.”

Quilts made in Angola now hang in , the Smithsonian Institution’s in Washington, D.C., and the building in Alexandria, Virginia.

One of the first quilts Garner made was a passage quilt, used instead of a plain white sheet to cover bodies being transported to the morgue. The quilt showed the clouds opening and angels receiving the inmate into heaven. It was adorned with the words, “I’m free, no more chains holding me.” Garner made another quilt to drape over the casket during funeral processions.

The program used the proceeds from the sale of other quilts to stock a cabinet with food and other sundries the hospice patients might need. If a patient’s family did not have the money to travel to Louisiana to see their loved one in his final days, the program would pay for their airline tickets. The family could stay overnight in the patient’s room, something that was unheard of in a maximum security prison.

The hospice program broke a lot of prison norms, and seemingly anything was on the table. When one hospice patient’s dying wish was to go fishing, the volunteers got the warden’s approval and brought a group of inmates with him.

The Mississippi River surrounds the Angola area on three sides, and the staff baited a fishing hole for days before the excursion so fish would be biting when the dying man arrived.

The fishing excursion became an annual event.

“You see the smile on their faces catching those fish,” Cain said. “They forgot all about that they were terminal.”

He added, “It teaches us to normalize our prisons and quit making them abnormal, bad places, and make it make people think they’re bad people. Hospice is the best example of all, to teach you to give back and then you will heal, and you won’t have more victims when you get out of prison.”

A Change in Prison Culture

Soon the impact of hospice was being felt well beyond the volunteers and their patients.

“It’s of their facilities. It changed the general population,” said Jamey Boudreaux, the executive director of the . “The general population sees people caring and it’s kind of contagious.”

When Boudreaux was hired in 1998, his first task from the board of directors was to shut down the hospice at Angola.

“They’re calling something hospice,” he recalled the board telling him, “and we can just see that there’s going to be some sort of big scandal and hospice is going to get a bad name.”

He called the prison and Cain invited him to come see the hospice program in person. Boudreaux, who had never been in a prison before, sat through a two-hour meeting with hospice volunteers and correctional officers.

He didn’t shut it down. Instead, he continued to attend monthly meetings at the prison for the next five years. Eventually, the administrators asked him if he’d feel comfortable being there alone with the volunteers, so they could speak more freely.

“I got to know these guys and they were genuinely committed to this whole notion of taking care of people at the end of life,” he said. “For some of them, it was a way to find redemption. For others, it was an affirmation that, ‘I don’t deserve to be in this place. And this gives me a very safe place to spend my time in prison.’”

The concept of prison hospice began to spread. In 2006, and again in 2012, Angola hosted a prison hospice conference. Now, five of the eight state prison facilities in Louisiana have inmate volunteer hospice programs. Nationwide, about 75 to 80 hospice programs operate behind bars.

“Most are pretty basic,” said Cordt Kassner, a consultant with in Colorado Springs, Colorado. “Angola is head and shoulders the model; the best one, period.”

Regaining Freedom

Between caring for patients, sewing quilts, and working in the prison library, Garner had little time for anything else, though he continued to push for his case to be reviewed to earn his freedom.

Then, during the covid-19 pandemic, the quilters were asked to sew masks for the prison. The prison set up shifts so prisoners could maximize use of the sewing machines, keeping them running 24 hours a day. Masks were shipped to other prisons as well. Garner estimated he made 25,000 masks.

“I actually had to take time away from my work, from trying to get out of that place, working legal work and stuff,” Garner said.

Finally, in 2021, his case was reviewed by the Orleans Parish District Attorney’s Civil Rights Division. A judge agreed with the district attorney that in receiving life sentences at Angola, Garner and his brother had been oversentenced. They offered the brothers a deal: They could plead guilty to the lesser charge of manslaughter and be released for time served.

Garner had to think about it. His lawyers told him he likely had a good case to sue and be compensated for the many years he had spent in prison. But if he took the deal, he couldn’t sue.

“I could fight it or gain my freedom,” he said.

His family wanted the brothers home. Garner had lost his mother, his father, two brothers, and an aunt while behind bars. He and his brother opted to forgo any money that might come their way and secured their release.

“Steven Garner came in as a horrible criminal,” Cain said. “But he left us a wonderful man.”

Most of Garner’s immediate family had moved to the Colorado Springs area after being displaced by Hurricane Katrina, and in January 2022, after serving 31 years in prison, he joined them.

Spreading the Message

Quilting is an art of putting scraps of fabric together, making everything fit coherently. Now out of prison, Garner had to find a way to make all the pieces of his life fit together as well. He found a job at a warehouse, rented a home near his family, and bought himself a car.

At his prison job, he made 20 cents an hour — $8 a week, $32 a month — that he used to buy soap and deodorant. It’s a strange feeling today, he said, to be able to go into a store and buy something that costs more than $32.

Now 51, he has missed the prime years of his adult life. But rather than trying to make up for lost time in some grand hedonistic rush, Garner went back to what had saved him. He started a consulting business to help prisons implement hospice programs.

Over the past two years, he has delivered speeches at state hospice association conferences, and last year he spoke at a meeting of the Colorado Bar Association.

For many hospice veterans, prison hospice reminds them of the initial days of hospice, when it was primarily a nonprofit entity, run by people called to serve others.

“You would be hard-pressed to find a hospice provider that’s willing to support hospice in correctional facilities,” said Kim Huffington, chief nursing officer at Sangre de Cristo Community Care, a hospice based in Pueblo, Colorado. “Hospice as an industry has undergone a lot of change in the last 10 years and there’s a lot more for-profit hospices than there used to be.”

Yet talking to Garner, she said, has reignited her passion for the field.

“In many situations, we tend to dehumanize what we don’t understand or have experience with,” Huffington said. “The way he can make you see what he’s experienced through his eyes is something that I take away from every conversation with him.”

In September, Garner went back to prison, this time at the behest of the Colorado Department of Corrections, which wanted his advice on how to restart a defunct hospice program at Colorado Territorial Correctional Facility in Cañon City.

It was a surreal experience entering a prison again, dropping his keys in a little basket at the security screening, knowing he’d get them back shortly.

“It was really just another experience in my life,” Garner reflected, “that I can come and go, rather than come and stay.”

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“It’s much lighter work. It’s nurturing. It’s slow,” said Streim, a licensed massage therapist.

Massage therapy for someone near the end of life looks and feels different from a spa treatment. Some people stay clothed or lie in bed. Others sit up in their wheelchairs. Streim avoids touching bedsores and fresh surgery wounds and describes her work as “meditating and moving at the same time.” She recalled massaging the shoulders, hands, and feet of one client as he sat in his favorite recliner and watched baseball on TV in the final weeks of his life.

“When you’re dying and somebody touches you without expectation of anything in return, you just get to be,” said Streim.

Massage therapists like Streim, who specializes in working with people who are dying or have an advanced form of cancer or other illness, are rare. Fewer than 1% of therapists specialize in hospice or palliative care massage, according to research by the , although many more may periodically offer massage for hospice patients.

Streim has a private practice in Lafayette, and her clients pay her out-of-pocket, as Medicare and private insurance typically don’t cover massage therapy. She also volunteers as a hospice massage therapist four hours a month.

It’s common for hospice organizations to use volunteer therapists for treatments, though some massage therapists, with physicians backing them, are pushing for paid positions as part of medical teams working alongside nurses and social workers. In the hospice unit at Palo Alto VA Medical Center, in Palo Alto, California, for example, massage therapists have been integral members of the multidisciplinary team for decades, said , a professor of medicine at Stanford University and the founding director of its palliative care education and training program.

The covid-19 pandemic made the recruitment of specialists for this intimate work, both paid and volunteer, more difficult, as the pool of massage therapists shrank amid school closures and exits from the profession. There are up to 10% fewer massage therapists today than before the pandemic, according to Les Sweeney, president of .

“It’s still hard for us to hire and recruit therapists,” said operations director at Healwell, a nonprofit that trains and employs massage therapists to work in hospitals in the Washington, D.C., area.

For three weeks in April 2020, licensed massage therapist , who works at Faith Presbyterian Hospice in Dallas, could not massage patients due to the state’s lockdown orders. Then, the state granted an allowance for massage therapists like her, working in medical settings under supervision, to resume giving massages. But it took several months for many therapists to return to work, and some didn’t return at all, Spence said.

“The pandemic was not kind to massage therapists,” Spence said. “And so we have lost a lot of people like me who are of an age and experience level that would really be called to and suitable” for oncology, hospice, and palliative massage.

“We need to get more therapists trained,” she said. She described receiving several calls each month from people who have found her name online. It has become harder since covid to find a therapist to refer them to, Spence said.

At TRU Community Care, which operates in several locations in Colorado, Volunteer Services Supervisor Wendy Webster said massages are a top request from patients and their families, but they’re limited in how many sessions they can offer, with only two volunteer massage therapists. (A third volunteer did not return after the pandemic.)

Finding new massage therapist volunteers is challenging, said Webster, in part because they can earn money in other settings and “they’re coming to us for free.” Thirty years ago, TRU Community Care’s nonprofit status was the norm, but now the majority of hospices are for-profit, with .

Despite that shift, hospices still rely heavily on volunteers. Medicare pays for at least six months of hospice for a patient on the condition that providers use volunteers for at least worked by paid staff and contractors. Sometimes, those volunteer hours are filled by massage therapists.

“All hospices, not-for-profit or for profit alike, should aim to include medically-trained massage therapists as part of best holistic care,” , a professor of medicine at Georgetown University who directs palliative care at MedStar Washington Hospital Center in Washington, D.C., wrote in an email. Employing these specialists is beneficial and does not diminish the important service of volunteers, particularly in end-of-life care, he added.

More studies on the impact of specialized massage could enact changes in the field, said , founder and executive director of Healwell, which, since 2009, has trained 500 therapists in hospital-based and oncology massage, as well as in how to work collaboratively with doctors and nurses.

In a of 387 patients in palliative care at MedStar, including some nearing the end of their lives, Groninger, Cates, Jordan, and other co-authors found that massage therapy improved quality of life.

Despite new research on the benefits of massage, Cates said, many hospices bring on volunteers who don’t have advanced training, because hospices may not know that specialized training — such as the kind Healwell offers — exists.

Streim, who paid for her own classes in oncology and lymphatic massage, said that investment in education qualified her for a six-year career as an oncology massage therapist at Good Samaritan Medical Center’s Center for Integrative Medicine in Lafayette and later her private practice. She teaches classes in adapting massage for the elderly and those with illnesses at Boulder Massage Therapy Institute. In her 39 years as a therapist, Streim has done it all: volunteer, staff, entrepreneur, teacher.

Like Streim, Spence has continually redefined her role. She began in private practice before becoming an employee of a large hospice agency in which she traveled across nine counties in Texas, giving thousands of massages to people dying in their homes, assisted living communities, and skilled nursing homes. Today, at Faith Presbyterian Hospice, she is one of three licensed massage therapists on staff and fully integrated as an employee of the organization, which has more than 100 patients.

“Those of us who do this work have made big investments in our profession and I’m glad to see that we can be paid for it,” she said.

Spence collects data on how patients rate their pain on a scale of 1 to 10 before and after a massage. Most fall asleep during the massage, which she takes as an indication their pain has lessened or they became more relaxed. Of those who stay awake, almost all say their pain subsided significantly or went away completely.

That kind of positive engagement with providers is more urgent than ever since the pandemic, Groninger said. Spence agreed: “The pandemic taught us all, in a very painful way, what it’s like to be deprived of human touch and human connections.”

Sometimes the nursing staff at Faith Presbyterian will roll a bed out onto the patio so a patient can hear the sounds of nature and the fountain gurgling during Spence’s massage. There is more teasing and laughter than she would have imagined. For patients unable to speak, Spence watches their reactions carefully: a deep exhalation or the face and body softening. Sometimes it’s tears running down their cheeks.

“It’s profound, helping someone find safe breaths along this very difficult dying journey,” she said.

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Two weeks before, my 94-year-old father-in-law, Melvin Zax, suffered a stroke after receiving dialysis and was rushed to a hospital near his residence in western New York.

There, he underwent a series of tests over the course of several days. With each test, Mel became more agitated. His hearing aids weren’t working right, and he didn’t understand what was happening.

Amid the hubbub of a busy hospital, Mel wasn’t sleeping at night. He became delirious, a frightening and all-too-common experience for older adults who are hospitalized.

For two days, Mel was housed in the emergency department; the hospital had no regular rooms available. Similar scenarios are playing out across the country, as hospitals stagger under a surge in respiratory illnesses and covid-19-fueled cases alongside acute staffing shortages. Older Americans are at particular risk: About are made by people 60 and older.

An ongoing crisis in long-term care options has contributed to the bottleneck. Some seniors are occupying hospital rooms longer than necessary because there’s no place else for them to go. Many nursing homes and home care agencies aren’t accepting new patients because they simply don’t have enough workers.

Staffing issues at my father-in-law’s hospital were apparent. My husband, who was at a conference in Montreal when his dad was first hospitalized, called repeatedly but couldn’t get through to a nurse or a doctor for hours. As far as we knew, Mel’s stroke was tended to promptly, but the lack of clear communication left us with lingering doubts. How often did nurses check on him in the subsequent hours and days? How were decisions about testing made, and what consideration was given to Mel’s advanced age?

Mel was a distinguished psychologist who’d worked part time until age 90 and remained mentally sharp. But he’d had diabetes for decades and since September 2020 had been getting dialysis three times a week, a grueling therapy for kidney failure. “I’m a wreck,” he would tell my husband over the phone after returning from a session.

I’d written about , and I knew the statistics: Patients 85 and older live, on average, two years after beginning treatment. Mel had already beaten the odds by surviving 26 months. Did the hospital staff realize how frail he was and adjust their treatment and testing regimens accordingly?

“Ask for a geriatrician consultation,” I advised my husband, who has legal and medical power of attorney for his father and was now at his side.

I worried that nothing being done at the hospital — electrocardiograms, CT scans, an attempted MRI scan (Mel couldn’t tolerate that), an order to wear a heart monitor — would change Mel’s prospects. And he was increasingly agitated, groaning and throwing his arms out in seeming distress.

Some of what hospital doctors suggested simply didn’t make sense. Mel had been taken off statins for high cholesterol in the past year; a hospital physician put him back on the medication, citing the risk of another stroke. Was there any chance it would really make a difference? (Statin therapy is for people near the end of life.)

Six days after his stroke, Mel was discharged to the nursing home where he’d been living for four months following a previous hospitalization. It’s part of a well-run senior living complex with a top-notch geriatrician who oversees medical care.

That geriatrician was the first to acknowledge that Mel might be dying. Gently, he told my husband that Mel had been depleted by all the interventions he’d received in the hospital and recommended that dialysis be stopped. Compassionately, he explained that Mel would probably pass within a week or two of ending the therapy.

Mel was barely conscious and unable to express what he wanted at this critical juncture. But my husband knew the ferocity of his father’s desire to live. “Let’s try one more session of dialysis and see what happens,” he told the doctor.

It didn’t work: Mel’s circulatory system was too compromised for dialysis to proceed. Over the next few days, Mel’s six grandchildren and three sons and their wives traveled to be at his side.

My husband realized it was time to arrange hospice care, and a social worker met with us to describe what that would entail. An aide would visit Mel several times a week, she explained, but that would take a few days to set up because of staffing issues. Meanwhile, a nurse would visit in the following days and we could call the hospice 24/7 for help.

As it turned out, an aide never arrived, but access to the hospice’s medical staff proved essential. As he lay in bed, Mel’s breathing became ragged and his chest heaved. With our encouragement, a nurse at the home called hospice, and orders were given to administer morphine every hour.

The next day, Mel seemed peaceful but more distant. There was a quiet in the room that hadn’t been there the day before. The hospice nurse arrived and observed that Mel’s breathing was halting for several seconds. Watch for these pauses and their lengthening, she told us. A few hours later, four of us sat at Mel’s side as his breathing slowed and then stopped.

That was four days before Thanksgiving.

How does one go on with a holiday under these circumstances? On the one hand, the entire family was together for the first time in many years. And there was lots to do: host a funeral, arrange for the weeklong Jewish mourning period, and prepare food for various occasions. Including Thanksgiving.

On the other hand, there was little time to think about what we’d just witnessed or process our emotions.

That’s what we’re doing now, as Christmas decorations go up in our neighborhoods and holiday songs fill the airwaves. Remembering Mel. Feeling sad. Noticing the shadow of death just behind us. And resolving to live well in the new year, knowing this is what Mel would want.

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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Lo que ves es un hermoso niño pequeño con piel suave y brillante, abundante cabello castaño y una sonrisa cautivadora. Lo que escuchas son arrullos y gritos que no indican de inmediato que hay algo  mal.

Pero sus padres, Adriana Pinedo y Héctor Martínez, saben bien la dolorosa verdad.

Aunque los médicos y la partera de Adriana habían descrito el embarazo como “perfecto” durante los nueve meses, Aaron nació con la mayoría de las células cerebrales muertas, como resultado de dos accidentes cerebrovasculares y una hemorragia masiva que sufrió mientras estaba en el útero.

Los médicos no están seguros de qué causó las anomalías que dejaron a Aaron prácticamente sin función cognitiva ni movilidad física. Su voluminosa cabellera esconde una cabeza cuya circunferencia es demasiado pequeña para su edad. Tiene epilepsia, lo que desencadena múltiples convulsiones al día, y su sonrisa no siempre es lo que parece. “Podría ser una sonrisa; podría ser una convulsión”, dijo su madre.

Poco después del nacimiento de Aaron, los doctores le dijeron a Adriana, de 34 años, y a Héctor, de 35, que no había esperanza y que debían “dejar que la naturaleza siguiera su curso”. Meses después se enterarían de que los médicos no esperaban que el niño viviera más de cinco días. El día 5, sus padres lo pusieron bajo cuidados paliativos en el hogar, lo que ha continuado hasta su segundo año de vida.

La familia recibe visitas semanales de enfermeras de cuidados paliativos, terapeutas, trabajadores sociales y un capellán en el pequeño apartamento de una habitación que alquilan en una casa de familia, en una tranquila calle residencial en esta ciudad del Inland Empire.

Uno de los criterios principales para el cuidado de hospicio, principalmente para personas mayores pero que también aplica a niños, es un diagnóstico de seis meses o menos de vida. Sin embargo, en el transcurso de 17 meses, el equipo médico de Aaron ha vuelto a certificar repetidamente su elegibilidad para cuidados paliativos.

Según de la Ley de Cuidado de Salud a Bajo Precio (ACA) de 2010, a los niños inscritos en Medicaid o en el Programa de Seguro Médico Infantil (CHIP) se les permite, a diferencia de los adultos, estar en cuidados paliativos mientras continúan recibiendo atención curativa, o para prolongar la vida. Las aseguradoras comerciales no están obligadas a cubrir esta “atención concurrente”, como se la denomina, pero ahora muchas la cubren.

A más de una década de su creación, se reconoce ampliamente que la atención concurrente ha mejorado la calidad de vida de muchos niños con enfermedades terminales, aliviado el estrés de la familia y, en algunos casos, mantenido la esperanza de una cura. Pero el acuerdo puede contribuir a un doloroso dilema para padres como Adriana y Héctor, quienes se debaten entre su feroz compromiso con su hijo y la futilidad de saber que su condición lo deja sin esperanza en un futuro.

“Podríamos perder una vida, pero si sigue viviendo así, perderemos tres”, dijo Adriana. “No hay calidad de vida para él ni para nosotros”

Los médicos de Aaron ahora dicen que posiblemente podría vivir por años. Su cuerpo no ha dejado de crecer desde que nació. Está en el percentil 96 de estatura para su edad y su peso está en el promedio.

Sus padres han hablado sobre “graduarlo” del hospicio. Pero nunca está estable por mucho tiempo, y agradecen las visitas del equipo de cuidados paliativos. Las convulsiones, a veces 30 al día, son un asalto persistente a su cerebro y, a medida que crece, se deben cambiar los medicamentos para controlarlas o recalibrar las dosis. Está en riesgo continuo de problemas gastrointestinales y acumulación de líquido potencialmente mortal en sus pulmones.

Adriana, que trabaja desde casa para una organización de salud pública sin fines de lucro, pasa gran parte de su tiempo con Aaron, mientras Héctor trabaja como paisajista. Dijo que ha elegido vivir el momento, porque de lo contrario su mente divaga hacia un futuro en el que “él podría morir, o no, y terminaré cambiando los pañales de un hombre de 40 años”.  Cualquiera de eso, dijo, “va a ser terrible”.

Si bien el cáncer es una de las principales enfermedades que afectan a los niños en cuidados paliativos, muchos otros, como Aaron, tienen defectos congénitos raros, deficiencias neurológicas graves o deficiencias metabólicas poco comunes.

“Tenemos enfermedades que las familias nos dicen que son uno de los 10 casos en el mundo”, dijo el doctor Glen Komatsu, director médico de TrinityKids Care, con sede en Torrance, que brinda servicios de hospicio en el hogar a Aaron y a más de 70 niños en los condados de Los Ángeles y Orange.

En los años previos a la implementación de ACA, defensores de la salud pediátrica presionaron mucho por la provisión de atención concurrente. Sin la posibilidad de cuidados para prolongar la vida o la esperanza de una cura, muchos padres se negaban a llevar a sus hijos con enfermedades terminales a un hospicio, pensando que equivalía a darse por vencidos.

Eso significaba que toda la familia perdía el apoyo que el hospicio puede brindar, no solo alivio del dolor y consuelo para el niño moribundo, sino atención emocional y espiritual para los padres y hermanos bajo presión extrema.

TrinityKids Care, administrado por Providence, el gran sistema nacional de salud católico, no solo envía enfermeras, trabajadores sociales y capellanes a los hogares. Para los pacientes participantes y sus hermanos, también ofrece proyectos de arte y ciencia, clases de ejercicios, películas y música. Durante la pandemia, estas actividades se llevaron a cabo a través de Zoom y voluntarios llevaban los suministros necesarios a los hogares de los niños.

La capacidad de obtener tratamientos que prolonguen sus vidas es una de las principales razones por las que los niños en cuidados concurrentes tienen más probabilidades que los adultos de sobrevivir al diagnóstico de seis meses de vida requerido para el hospicio.

“La atención concurrente, por su propia intención, muy claramente extenderá sus vidas, y al extender sus vidas ya no serán elegibles para cuidados paliativos si se utiliza el criterio de expectativa de vida de seis meses”, dijo el doctor David Steinhorn, médico de cuidados intensivos pediátricos en Virginia, que ha ayudado a desarrollar numerosos programas de cuidados paliativos infantiles en el país.

Otro factor es que los niños, incluso los enfermos, son simplemente más fuertes que muchas personas mayores.

“Los niños enfermos suelen estar sanos, excepto por un órgano”, dijo la doctora Debra Lotstein, jefa de la división de confort y cuidados paliativos del Children’s Hospital Los Angeles. “Pueden tener cáncer en el cuerpo, pero sus corazones y sus pulmones están bien, en comparación con una persona de 90 años que, de base, no es tan resistente”.

Todos los órganos vitales de Aaron Martinez, excepto su cerebro, parecen estar funcionando. “Ha habido momentos en los que lo traemos, y la enfermera mira el expediente y lo mira, y no puede creer que sea ese niño”, dijo Héctor, su padre.

Cuando los niños superan la expectativa de vida de seis meses, se les debe volver a certificar para permanecer en el hospicio. Steinhorn dijo que, en muchos casos, está dispuesto a volver a certificar a sus pacientes pediátricos indefinidamente.

Incluso con médicos que los defienden, no siempre es fácil para los niños recibir cuidados paliativos. La mayoría de los hospicios atienden principalmente a adultos y son reacios a aceptar niños.

“El hospicio dirá: ‘No tenemos la capacidad para tratar niños. Nuestras enfermeras no están capacitadas. Es diferente. Simplemente no podemos hacerlo’”, dijo Lori Butterworth, cofundadora de Children’s Hospice and Palliative Care Coalition of California en Watsonville. “La otra razón es no querer, porque es existencialmente devastador, triste y duro”.

Las finanzas también juegan un papel. El cuidado de hospicio en el hogar se paga a establecida por Medicare (un poco más de $200 por día durante los primeros dos meses, alrededor de $161 por día después) y generalmente es la misma para niños y adultos. Los niños, en particular aquellos con enfermedades raras, a menudo requieren cuidados más intensivos e innovadores, por lo que el pago no alcanza tanto.

La provisión de atención concurrente ha hecho que el cuidado de pacientes pediátricos sea más viable para las organizaciones de cuidados paliativos, dijeron Steinhorn y otros. Según ACA, muchos de los gastos de ciertos medicamentos y servicios médicos pueden trasladarse al seguro primario del paciente, dejando a los hospicios responsables por el alivio del dolor y la atención de confort.

Aún así, la cantidad relativamente pequeña de niños que mueren cada año por dolencias prolongadas difícilmente hace que el hospicio pediátrico sea una línea de negocios atractiva en una industria que anhela crecer, especialmente una en la que los inversores de capital privado están activos y buscan pagos grandes.

En California, solo 21 de 1,336 hospicios informaron tener un programa de cuidados paliativos pediátricos especializado, y 59 dijeron que atendían al menos a un paciente menor de 21 años, según de datos estatales de 2020 realizado por Cordt Kassner, director ejecutivo de Hospice Analytics en Colorado Springs, Colorado .

Los proveedores de cuidados paliativos que atienden a niños a menudo se enfrentan a un desafío más básico: incluso con la posibilidad de atención concurrente, muchos padres aún equiparan el cuidado de hospicio con la aceptación de la muerte.

Ese fue inicialmente el caso de Matt y Reese Sonnen, residentes de Los Ángeles cuya hija, Layla, nació con un trastorno convulsivo que no tenía nombre: su cerebro simplemente no se había desarrollado en el útero y una resonancia magnética mostró que “líquido había ocupado el espacio en donde no estaba el cerebro”, dijo su madre.

Cuando el equipo de Layla mencionó por primera vez el hospicio, “estaba en el auto hablando por teléfono y casi choco”, recordó Reese. “El primer pensamiento que me vino a la mente fue: ‘Es el final’, pero sentimos que ella no estaba cerca de eso, porque era fuerte, era poderosa. Era mi niña. Iba a superar esto”.

Aproximadamente tres meses después, cuando el sistema nervioso de Layla se deterioró y se retorcía de dolor, sus padres acordaron inscribirla en un hospicio con TrinityKids Care. Murió a las pocas semanas, poco después de su segundo cumpleaños. Estaba en los brazos de su madre, con Matt cerca.

“De repente, Layla exhaló una gran bocanada de aire. La enfermera me miró y dijo: ‘Ese fue su último aliento’. Literalmente estaba respirando su último aliento”, relató Reese. “Nunca quise volver a respirar, porque ahora sentía que la tenía en mis pulmones. No me hagas reír, no me hagas exhalar”.

Los padres de Layla no se arrepienten de su decisión de internarla en un hospicio. “Fue la decisión absolutamente correcta y, en retrospectiva, deberíamos haberlo hecho antes”, dijo Matt. “Estaba sufriendo y nosotros teníamos puestas anteojeras”.

Adriana Pinedo dijo que está “infinitamente agradecida” por el cuidado de hospicio, a pesar de la angustia por la condición de Aaron. A veces, la trabajadora social se detiene, dijo, solo para saludar y dejar un café con leche, un pequeño gesto que puede sentirse muy alentador. “Han sido nuestro salvavidas”, dijo.

Adriana habla de una amiga suya que tiene un bebé sano, también llamado Aaron, que está embarazada de su segundo hijo. “Están viviendo todas las cosas que estaban en nuestra lista. Y los quiero mucho”, dijo Adriana. “Pero es casi difícil de mirar, porque es como mirar las cosas que no obtuviste. Es como el día de Navidad, mirando a través de la ventana a la casa del vecino, y estás sentado allí en el frío”.

Sin embargo, parece palpablemente dividida entre ese remordimiento sombrío y el amor incondicional que los padres sienten por sus hijos. En un momento, Adriana se interrumpió a media frase y se volvió hacia su hijo, que estaba en los brazos de Héctor: “Sí, papi, eres tan lindo y sigues siendo mi sueño hecho realidad”.

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

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What you see is a beautiful little boy with smooth, lustrous skin, an abundance of glossy brown hair, and a disarming smile. What you hear are coos and cries that don’t immediately signal anything is horribly awry.

But his parents, Adriana Pinedo and Hector Martinez, know the truth painfully well.

Although Adriana’s doctors and midwife had described the pregnancy as “perfect” for all nine months, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed he sustained while in utero.

Doctors aren’t sure what caused the anomalies that left Aaron with virtually no cognitive function or physical mobility. His voluminous hair hides a head whose circumference is too small for his age. He has epilepsy that triggers multiple seizures each day, and his smile is not always what it seems. “It could be a smile; it could be a seizure,” his mother said.

Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, there was no hope and they should “let nature take its course.” They would learn months later that the doctors had not expected the boy to live more than five days. It was on Day 5 that his parents put him in home hospice care, an arrangement that has continued into his second year of life.

The family gets weekly visits from hospice nurses, therapists, social workers, and a chaplain in the cramped one-bedroom apartment they rent from the people who live in the main house on the same lot on a quiet residential street in this Inland Empire city.

One of the main criteria for hospice care, largely for seniors but also applied to children, is a diagnosis of six months or less to live. Yet over the course of 17 months, Aaron’s medical team has repeatedly recertified his hospice eligibility.

Under of the 2010 Affordable Care Act, children enrolled in Medicaid or the Children’s Health Insurance Program are allowed, unlike adults, to be in hospice while continuing to receive curative or life-extending care. Commercial insurers are not required to cover this “concurrent care,” but many now do.

More than a decade since its inception, concurrent care is widely credited with improving the quality of life for many terminally ill children, easing stress on the family and, in some cases, sustaining hope for a cure. But the arrangement can contribute to a painful dilemma for parents like Adriana and Hector, who are torn between their fierce commitment to their son and the futility of knowing that his condition leaves him with no future worth hoping for.

“We could lose a life, but if he continues to live this way, we’ll lose three,” said Adriana. “There’s no quality of life for him or for us.”

Aaron’s doctors now say he could conceivably live for years. His body hasn’t stopped growing since he was born. He’s in the 96th percentile for height for his age, and his weight is about average.

His parents have talked about “graduating” him from hospice. But he is never stable for long, and they welcome the visits from their hospice team. The seizures, sometimes 30 a day, are a persistent assault on his brain and, as he grows, the medications intended to control them must be changed or the doses recalibrated. He is at continual risk of gastrointestinal problems and potentially deadly fluid buildup in his lungs.

Adriana, who works from home for a nonprofit public health organization, spends much of her time with Aaron, while Hector works as a landscaper. She has chosen to live in the moment, she said, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.” Either of those, she said, “are going to suck.”

While cancer is one of the major illnesses afflicting children in hospice, many others, like Aaron, have rare congenital defects, severe neurological impairments, or uncommon metabolic deficiencies. 

“We have diseases that families tell us are one of 10 cases in the world,” said Dr. Glen Komatsu, medical director of Torrance-based TrinityKids Care, which provides home hospice services to Aaron and more than 70 other kids in Los Angeles and Orange counties.

In the years leading up to the ACA’s implementation, pediatric health advocates lobbied hard for the concurrent care provision. Without the possibility of life-extending care or hope for a cure, many parents refused to put their terminally ill kids in hospice, thinking it was tantamount to giving up on them. That meant the whole family missed out on the support hospice can provide, not just pain relief and comfort for the dying child, but emotional and spiritual care for parents and siblings under extreme duress.

TrinityKids Care, run by the large national Catholic health system Providence, doesn’t just send nurses, social workers, and chaplains into homes. For patients able to participate, and their siblings, it also offers art and science projects, exercise classes, movies, and music. During the pandemic, these activities have been conducted via Zoom, and volunteers deliver needed supplies to the children’s homes.

The ability to get treatments that prolong their lives is a major reason children in concurrent care are more likely than adults to outlive the six-months-to-live diagnosis required for hospice.

“Concurrent care, by its very intention, very clearly is going to extend their lives, and by extending their lives they’re no longer going to be hospice-eligible if you use the six-month life expectancy criteria,” said Dr. David Steinhorn, a pediatric intensive care physician in Virginia, who has helped develop numerous children’s hospice programs across the U.S.

Another factor is that kids, even sick ones, are simply more robust than many older people.

“Sick kids are often otherwise healthy, except for one organ,” said Dr. Debra Lotstein, chief of the division of comfort and palliative care at Children’s Hospital Los Angeles. “They may have cancer in their body, but their hearts are good and their lungs are good, compared to a 90-year-old who at baseline is just not as resilient.”

All of Aaron Martinez’s vital organs, except for his brain, seem to be working. “There have been times when we’ve brought him in, and the nurse looks at the chart and looks at him, and she can’t believe it’s that child,” said his father, Hector.

When kids live past the six-month life expectancy, they must be recertified to stay in hospice. In many cases, Steinhorn said, he is willing to recertify his pediatric patients indefinitely.

Even with doctors advocating for them, it’s not always easy for children to get into hospice care. Most hospices care primarily for adults and are reluctant to take kids.

“The hospice will say, ‘We don’t have the capacity to treat children. Our nurses aren’t trained. It’s different. We just can’t do it,’” said Lori Butterworth, co-founder of the Children’s Hospice and Palliative Care Coalition of California in Watsonville. “The other reason is not wanting to, because it’s existentially devastating and sad and hard.”

Finances also play a role. Home hospice care is paid at a set by Medicare — slightly over $200 a day for the first two months, about $161 a day after that — and it is typically the same for kids and adults. Children, particularly those with rare conditions, often require more intensive and innovative care, so the per diem doesn’t stretch as far.

The concurrent care provision has made taking pediatric patients more viable for hospice organizations, Steinhorn and others said. Under the ACA, many of the expenses for certain medications and medical services can be shifted to the patient’s primary insurance, leaving hospices responsible for pain relief and comfort care.

Even so, the relatively small number of kids who die each year from protracted ailments hardly makes pediatric hospice an appealing line of business in an industry craving growth, especially one in which private equity investors are active and seeking a big payday.

In California, only 21 of 1,336 hospices reported having a specialized pediatric hospice program, and 59 said they served at least one patient under age 21, according to of 2020 state data by Cordt Kassner, CEO of Hospice Analytics in Colorado Springs, Colorado.

Hospice providers that do cater to children often face a more basic challenge: Even with the possibility of concurrent care, many parents still equate hospice with acceptance of death. That was the case initially for Matt and Reese Sonnen, Los Angeles residents whose daughter, Layla, was born with a seizure disorder that had no name: Her brain had simply failed to develop in the womb, and an MRI showed “fluid taking up space where the brain wasn’t,” her mother said.

When Layla’s team first mentioned hospice, “I was in the car on my phone, and I almost crashed the car,” Reese recalled. “The first thought that came to mind was, ‘It is just the end,’ but we felt she was nowhere near it, because she was strong, she was mighty. She was my little girl. She was going to get through this.”

About three months later, as Layla’s nervous system deteriorated, causing her to writhe in pain, her parents agreed to enroll her in hospice with TrinityKids Care. She died weeks later, not long after her 2nd birthday. She was in her mother’s arms, with Matt close by.

“All of a sudden, Layla breathed out a big rush of air. The nurse looked at me and said, ‘That was her last breath.’ I was literally breathing in her last breath,” Reese recounted. “I never wanted to breathe again, because now I felt I had her in my lungs. Don’t make me laugh, don’t make me exhale.”

Layla’s parents have no regrets about their decision to put her in hospice. “It was the absolute right decision, and in hindsight we should have done it sooner,” Matt said. “She was suffering, and we had blinders on.”

Adriana Pinedo said she is “infinitely grateful” for hospice, despite the heartache of Aaron’s condition. Sometimes the social worker will stop by, she said, just to say hello and drop off a latte, a small gesture that can feel very uplifting. “They’ve been our lifeline,” she said.

Adriana talks about a friend of hers with a healthy baby, also named Aaron, who is pregnant with her second child. “All the stuff that was on our list, they’re living. And I love them dearly,” Adriana said. “But it’s almost hard to look, because it’s like looking at the stuff that you didn’t get. It’s like Christmas Day, staring through the window at the neighbor’s house, and you’re sitting there in the cold.”

Yet she seems palpably torn between that bleak remorse and the unconditional love parents feel toward their children. At one point, Adriana interrupted herself midsentence and turned to her son, who was in Hector’s arms: “Yes, Papi, you are so stinking cute, and you are still my dream come true.”

This story was produced by , which publishes , an editorially independent service of the .

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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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