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Dying Without a Voice: How Prisons Fail Incarcerated People at the End of Life

A national survey of correctional health providers reveals that most prisons lack dedicated end-of-life programs, leaving aging incarcerated people without the planning tools that every patient is legally entitled to hold.

AuthorBeyond the Curve
Published2026-08-12
ReviewSource checked
Sources9 sources

This article is public commentary and advocacy analysis published after automated source, claim, structure, and legal-boundary checks.

prison conditionsfamily separationfacility closureinstitutional accountability

What Happened

Verified source summary

A peer-reviewed study published in January 2024 in the American Journal of Hospice and Palliative Medicine, led by University of Minnesota nursing professor Susan O'Conner-Von and colleagues, surveyed state-level prison health care professionals across the country about their facilities' practices on advance care planning (ACP) for people with advanced chronic or life-limiting illness. According to the journal abstract and a University of Minnesota summary of the research, the national web-based survey drew 152 completed responses, representing a 22 percent response rate. The findings, as reported by the University of Minnesota School of Nursing, are stark: most respondents said their prison did not have a dedicated end-of-life care program, and only 11 percent reported that their facility offered a peer-care program in which fellow incarcerated people could serve as caregivers or health care agents. Roughly two-thirds of respondents indicated their facility did provide the opportunity to designate a health care agent — a person who can advocate for a patient when that patient can no longer speak for themselves — but the survey also found that only a small fraction of facilities offered advance care planning to all incoming incarcerated people upon admission.

The study arrives at a moment when the scale of the problem it documents is accelerating. According to data published by the Johns Hopkins Bloomberg School of Public Health in January 2025, the number of incarcerated individuals aged 55 and older in U.S. prisons grew from approximately 102,700 in 2008 to 171,700 in 2022. Research published in Epidemiologic Reviews has projected that by 2030, incarcerated people aged 55 and older could constitute more than one-third of the entire U.S. prison population. That same body of research notes that in 2011 there were 14 times as many incarcerated people aged 55 or older as there were in 1981 — a transformation driven not by a surge in older people committing crimes, but by sentencing policies that impose longer terms and restrict early release. The O'Conner-Von study, as summarized by the University of Minnesota, was completed before the COVID-19 pandemic, meaning the conditions it describes predate the additional mortality pressure that the pandemic placed on correctional health systems.

What Beyond the Curve Sees

Beyond the Curve lens

The O'Conner-Von survey captures a structural failure, not a staffing shortage. Advance care planning is not a luxury amenity. It is the mechanism through which a patient communicates who should speak for them, what treatments they want or refuse, and how they want to die. When a prison lacks a dedicated end-of-life program and does not routinely offer ACP at admission, it is not simply failing to provide a service — it is severing the connection between an incarcerated person and the family members or trusted individuals who would otherwise be their voice in a medical crisis.

The family dimension of this gap is direct and concrete. A 2026 study published in the Journal of General Internal Medicine found that fewer than 1 percent of incarcerated people have an advance directive, compared to approximately 36 percent of the non-incarcerated population. When an incarcerated person loses decision-making capacity without having designated a health care agent, the question of who speaks for them becomes legally and ethically contested. Research published in the AMA Journal of Ethics in 2019 identified that correctional officials — including wardens and guards — are frequently involved in making medical decisions for incarcerated patients who lack capacity, even though laws in many states and federal Bureau of Prisons policy prohibit correctional officials from serving as surrogates. The result is that family members who would legally and ethically be the appropriate decision-makers are often bypassed, not because the law excludes them, but because the institutional infrastructure to connect them was never built.

The counterweight to this analysis is real: correctional health systems operate under severe resource constraints, and the logistical challenges of providing end-of-life care inside a security institution are genuinely different from those in a community hospital or hospice. Prisons were designed for a younger, healthier population, as the University of Minnesota summary of the O'Conner-Von research notes, and retrofitting them for geriatric and palliative care requires investment that most state legislatures have not authorized. Some facilities have made meaningful efforts — building hospice units, training peer caregivers, and contracting with palliative care specialists. These efforts deserve acknowledgment.

But the counterweight is incomplete for a specific reason: the absence of advance care planning is not primarily a resource problem. Completing a health care directive requires a conversation, a form, and a witness. The barrier is not cost — it is institutional priority. When only 11 percent of surveyed facilities offer peer-care programs, and when most do not provide ACP at admission, the gap reflects a system that has not treated the end-of-life autonomy of incarcerated people as a standard of care. Beyond the Curve's analysis is that this is a structural choice, not an inevitable constraint, and that it has measurable consequences for families who are left without legal standing to advocate for their loved ones at the moment of greatest need.

What The Official Record Says

Verified record

The legal framework governing advance care planning for incarcerated people is clearer than the institutional practice. A 2025 article in the AMA Journal of Ethics states that incarcerated patients have the ethical ability to engage in medical decision-making in the same manner as patients who are not incarcerated, and that advance directives and advance care planning documents should be considered in the same manner for both populations. The same source notes that when an incarcerated patient lacks capacity and has not appointed a legal representative, state law governs the appointment of a surrogate decision-maker — and that representatives of the carceral system, such as a prison warden, should refrain from making medical treatment decisions for incarcerated patients.

At the federal level, Bureau of Prisons policy, set out in Program Statement 5050.050, addresses compassionate release and reduction in sentence for inmates with terminal or debilitating medical conditions. The policy provides that consideration may be given to inmates with incurable, progressive illness or debilitating injury from which they will not recover. However, as the Prison Policy Initiative has documented, the compassionate release process is lengthy and cumbersome, and given that applicants are almost always terminally ill or profoundly incapacitated, many die before their cases are resolved. The process varies significantly across states, some of which use different names — medical parole, geriatric parole — and different procedural frameworks.

A 2020 rapid literature review published in Health and Justice (BMC) identified that self-determination with respect to making future medical decisions is a human right that prisoners do not lose when remanded into custody in Western countries, and that advance care planning enables individuals to make their values and preferences known for a time when they can no longer communicate their decisions. That same review found that barriers unique to correctional settings — including provider uncertainty about the legal validity of ACP documents inside prisons, and institutional policies that restrict their use — compound the general under-utilization of ACP in the broader population. A 2019 qualitative study published in PubMed found that among correctional health care providers surveyed, 85 percent reported familiarity with ACP, but only 42 percent could provide accurate definitions of it — a knowledge gap that directly affects whether patients are offered the planning tools they are legally entitled to use.

As of 2022, according to the Journal of General Internal Medicine study published in 2026, 44 states have surrogate decision-making laws, most of which mandate relying on patient-designated and next-of-kin surrogates. Twelve states explicitly prohibit correctional officials from serving as surrogates for incarcerated patients who cannot make their own decisions. Federal prisons maintain a similar prohibition. Nevertheless, the same study found that correctional officials are frequently involved in surrogate decision-making in practice.

Why It Matters

Public accountability

The O'Conner-Von survey documents a gap that has compounding consequences. When an incarcerated person does not have a health care directive and loses the capacity to make decisions, the family member who would otherwise be their legal surrogate may not be notified in time, may not know they have standing to intervene, or may find that a correctional official has already stepped into that role. The AMA Journal of Ethics has noted that visitation by a patient's surrogate medical decision-maker has a direct effect on patient care, because the efficiency of the surrogate's communication with physicians increases the quality of medical decision-making. A system that does not build the infrastructure for that communication — at admission, before crisis — is one that structurally disadvantages incarcerated patients and their families at the moment of greatest vulnerability.

The human cost is not abstract. The Johns Hopkins data show that older incarcerated adults report disabilities at nearly double the rate of their community-dwelling peers, with cognitive impairments particularly pronounced: 15 percent of incarcerated individuals aged 55 and older reported cognitive difficulty, compared to 7 percent in the community. These are people who will need surrogate decision-makers. The question is whether the system will have connected them to those surrogates before the crisis arrives, or whether families will learn of a loved one's condition only after decisions have already been made.

Compassionate release exists as a partial answer — a mechanism to allow people to die outside prison walls, in the company of family. But as the Vera Institute has documented, prisons make insufficient use of these laws, and even people who are referred, found eligible, and granted release by a parole board can face formidable challenges finding community placements that can accommodate their medical needs. The compassionate release pathway and the advance care planning pathway are not substitutes for each other; they address different moments in the same trajectory. A person who has not completed a health care directive is not better positioned to navigate a compassionate release process.

Beyond the Curve's position is precise: the findings of the O'Conner-Von survey describe a correctable institutional failure. Offering advance care planning at admission is not a clinical innovation — it is a baseline practice that the broader health care system has recognized as standard for decades. Extending that baseline to incarcerated people requires policy direction, provider training, and the institutional will to treat end-of-life autonomy as a right rather than a privilege. The families waiting on the other side of that decision deserve no less.

Sources

Justice Advocate note: Public commentary and advocacy analysis only. No legal advice, private case facts, deadline calculation, filing recommendation, or outcome prediction.