Each year, thousands of people die in jails and prisons, often while chained to a bed, alone and in pain, with little to no say over their end-of-life care, according to a report from KFF Health News.
The report uses the story of an Alabama man to illustrate how terminally ill people in jails and prisons are denied appropriate care, cut off from their loved ones, and not allowed to make medical decisions while dying.
“It’s just unimaginable.”
Brian Rigsby spent most of his adult life in and out of Alabama’s violent prisons, grappling with mental health problems and severe substance abuse, KFF Health News reported.
In 2023, according to KFF Health News, after complaining of pain and swelling in his abdomen, he was taken from Elmore Correctional Facility to Jackson Hospital in Montgomery.
Ten days later, while he was shackled to a hospital bed, doctors told him he had hepatitis C that had gone untreated in prison and had caused irreversible damage to his liver. Just 46 years old, he learned he did not have long to live, KFF Health News reported.
Mr. Rigsby’s mother, Pamela Moser, wrote that she, Brian’s father, and his two sisters were allowed to spend four hours with him in the hospital—but only after days of pleading with prison officials. A former hospice nurse, she applied for a medical furlough to get him released to hospice care.
After staff at YesCare, a for-profit corporation with a $1 billion contract to provide medical care in Alabama prisons, learned that Mr. Rigsby was on palliative care, KFF Health News reported, they told the hospital YesCare would stop paying for Mr. Rigsby’s hospital stay and transferred him to Staton Correctional Facility in Elmore.
His mother never saw or spoke to him again. Brian Rigsby died a week later of liver failure in the infirmary, according to KFF Health News.
Ms. Moser wrote that his family was not allowed to visit Brian at Staton. He was too weak to come to the phone and staff said they couldn’t take a phone to him. All the family could do was to ask prison staff to tell Brian they loved him.
“It breaks my heart that he could not talk with his mother during his last days,” Ms. Moser told KFF Health News.
“To let a person die alone in prison when he has family that loves him and wants to be with him during his final time on this earth. It’s just unimaginable,” she wrote.
“Shocking”
Standards boards, policymakers, and health care providers agree that terminally ill people in custody should receive treatment that minimizes suffering and allows them to be actively involved in care planning, KFF Health News reported.
The National Commission on Correctional Health Care, which accredits correctional health care programs across the country, says terminally ill people in prison should be allowed to make decisions about treatment, including whether to accept life-sustaining care, and appoint a friend or family member to make medical decisions for them, according to KFF Health News.
The commission’s vice president of accreditation, Amy Panagopoulos, told KFF Health News that jails and prisons should provide terminal patients with pain medication that would not otherwise be available, allow extra visits with loved ones, and consider releasing them to receive hospice care in their communities.
But the reality often is more like what Brian Rigsby went through.
People dying in prison are commonly separated from their families and given only minimal pain medication, Nicole Mushero, a geriatrician at Boston University’s Chobanian & Avedisian School of Medicine who works with incarcerated patients, told KFF.
“When you’re coming at this from a health care perspective, it’s kind of shocking,” she said.
State Control Over Life—and Death
State laws on medical decision-making, informed consent, and patient privacy apply to incarcerated patients, biomedical ethicist Gregory Dober told KFF Health News. But prison officials and prison medical contractors like YesCare often put security above all else.
A 2021 study found that even where incarcerated patients are allowed to identify a health-care proxy or complete advance care directives, the state often exerts control by dictating who can serve as health-care proxies and authorizing correctional officers to ignore DNR orders that they think could create some unspecified security threat.
Corrections officials also decide whether and when to contact an incarcerated patient’s loved ones, Penn State nursing professor Erin Kitt-Lewis told KFF Health News. Where prisons control all communications between dying patients and their loved ones, they control—and often deny—patients’ ability to include their families or health-care proxies in end-of-life decisions, she explained.
Correctional officers dictate treatment decisions even when terminally ill people in custody are treated at hospitals, physicians told KFF Health News.
There tends to be a lot of uncertainty among hospital staff about state laws and hospital policies regarding incarcerated patients, KFF Health News reported. As a result, hospital staff are often too deferential to prison guards, who sometimes tell staff they cannot contact next of kin or tell a patient about discharge plans for “security reasons.”
Many terminally ill patients, like Brian Rigsby, spend their last days or weeks in prison infirmaries, which generally are not prepared to make complex decisions about types of treatment, when to stop treatment, and who can make care decisions at the end of life, Laura Musselman, director of communications at the Humane Prison Hospice Project, told KFF Health News.
“Our prison system was not designed to provide care for anyone, especially not people who are chronically ill, terminally ill, older, actively dying,” she said.