Brian Rigsby was lying with his right wrist shackled to a hospital bed in Montgomery, Alabama, when he learned he didn’t have long to live.

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 KFF 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 incarcerated population ages rapidly, 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 2021 study led by Georgia State University. 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 National Commission on Correctional Health Care, 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 agency’s patient care guide.

“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 KFF 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 break ribs and bruise organs, with a low likelihood of success. 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.

By Renuka Rayasam
Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.