Freedom and care at the end of life: Reporting the “greying” of one of the United States of America’s largest prison systems

In this expert blog for PRI, researchers Joanne DeCaro and Christopher Seeds summarise their groundbreaking study in California, which involved interviews with older people in the state’s prisons. Drawing on a white paper prepared for California’s prison authorities, they explore the complex needs of those expected to die while serving long sentences and the challenges of providing appropriate care. 

Introduction 

Over the past half-century, in part as a consequence of longer sentence lengths, more time served on parole-eligible sentences and increased penal capacities, the average age of the prison population in many of the world’s nations has risen. Advanced age creates unique problems for people living in prison. Older incarcerated adults must navigate material environments that, as a general matter, were not constructed with physical degeneration or disability in mind. Physical illness exacerbates the social isolation and precarity endemic to incarceration. Prison conditions themselves and the anxieties that they foster can generate and exacerbate chronic and communicable health conditions (i). If the scale of imprisonment presents a global public health crisis, the aging of prison populations accentuates it. 

An aging prison population poses myriad challenges for penal institutions and prison health systems. While chronic health conditions are not exclusively the terrain of older adults, they become more prevalent and more costly for penal systems as people age (ii). And while prison death, significantly, has causes beyond illness and disease, “natural causes” account for the great majority of deaths in prison (iii). Relatively few prisons, however, have dedicated geriatricians or palliative care staff, let alone a hospice or hospice services. Accordingly, along with calls for reduced incarceration of older adults and more community support systems to receive them upon release from prison, geriatric and palliative care has emerged internationally as a central topic in public health and penal reform, particularly in higher-income nations (iv). The topical focus on palliative care in prison, also spurred by the impact of the COVID-19 pandemic, encompasses care provided to general prison populations as well as services provided in specialized care facilities such as critical care units or prison hospices (v).

In this blogpost, we summarize our recent study of the care provided to older adults living with chronic illness in prisons in the State of California in the USA. The research was carried out with the approval and support of California Corrections Health Care Services (CCHCS), which oversees medical care in the California Department of Corrections and Rehabilitation (CDCR) and which shared our interest in understanding the concerns and needs of older incarcerated people and best practices for care for a rapidly increasing older adult prison population. The USA is a high-income nation, but with a level of incarceration that is substantially higher than other nations, and prison conditions that are often harsh and inadequate. California, where life sentences generate over a third of the prison population (vi), offers a case in point: it has the largest economy of any US state—the largest sub-national economy in the world—and yet the State’s prison health care system was placed under federal receivership in 2005 and the conditions of confinement and prison health care were found constitutionally inadequate by the US Supreme Court in 2011 (vii). For context, note that California is one of the US States that spends the most on prison health care (viii). As the average age of people incarcerated in California’s prisons has risen, so has recognition of the need for unique attention to the needs of older incarcerated adults. In 2022, the California legislature passed a bill fortifying the State’s process for compassionate release. Between 2022 and 2024 -the course of time during which we conducted our research-new administrative entities within CCHCS/CDCR along with partnerships between the prison administration and community organizations, encouraged palliative care training for prison medical staff and peer care workers throughout the State. 

As researchers, our goal was to better understand the common challenges and decision-making practices of older incarcerated adults living with a chronic health condition as well as the care available to them, and the perspectives on care held by their medical providers. Our research involved interviews with (a) medical staff, (b) groups of incarcerated patients (at ten institutions designated for men and one designated for women), and (c) patients and members of the multidisciplinary care team at a prison hospice (including physicians, nurses and, among others, peer care workers, a chaplain and social workers). Based on those interviews and observations, we produced a report for California Correctional Health Care Services. We find value in sharing the perspectives, concerns, and suggestions drawn from the California system in the United States with a broader and international audience, as a window into the problem of aging in prison more generally—and, significantly, from the people most directly involved: patients, medical staff and care teams. 

The Study 

The research team carried out group interviews with 110 incarcerated people across ten institutions in the California Department of Corrections and Rehabilitation. Across those same institutions, we conducted individual interviews with 35 medical staff who provide care to older adults. Additionally, over a two-week period, we observed conditions onsite at the only hospice in the California penal system and conducted interviews with members of the hospice care team, peer caregivers and patients.  

In selecting institutions, we sought diversity across region, security level status, protective custody status, access to levels of medical care, access to in-custody versus outside medical care and proximity to hospice and palliative care facilities. For participants, the qualifying factors for incarcerated people were age and chronic illness. Over 50 years old was selected as the lower age limit to be considered for this study because of the well-recorded phenomenon of accelerated age-related health issues that occurs in prisons in the United States. Time inside, expected release date and race/ethnicity were also considered in shaping the composition of the interview groups.  

Involving 11 institutions (ten designated for men and one designated for women), the research took place at nearly a third of the prisons in California. Some institutions and facilities were very receptive and eager to work with us. Others were more resistant; one institution originally selected was not included in the study. Some facilities were modern in design with health care environments that resembled those outside prison. The institutions varied in terms of security level and we perceived a range of ways in which security altered health care, underscoring that custody and safety remain inextricable from concerns about health in prisons. 

The Takeaways 

Recognized barriers to end-of-life care in prisons include: 

• poor communication between medical staff and patients,  

• failures to diagnose illness or harmful delays in diagnosis,  

• lack of continuity of care and  

• dehumanizing practices and interactions with staff.  

These problems appear in the findings of public health and other social science literature on geriatric and palliative prison care across many nations (ix). Our interviews with patients and medical staff supported all of these, but certain themes stood out.  

One of the strongest messages from our interviews with medical staff was the importance of the medical care team as a unit, one comprised of staff with different specialties and complementary roles. This was exemplified at the lone hospice in the California Department of Corrections and Rehabilitation, where the care team model is an integral part of the palliative care philosophy. But the importance of care teams was emphasized too by practitioners at other prisons where the care team model was presented as an ideal yet to be realized. The success of the care team at the hospice was anchored by peer care workers, which emphasizes one strength of an embedded prison hospice model, which a community hospice may miss: the peer care giving element. Throughout the study the importance of being cared for by your own people was relayed to us over and over again. A base foundation of trust and empathy in peer care relationships proved to be, at times, an essential bridge between medical staff and patient. Peer care workers also often found the experience life-altering and invaluable. We are not advocating for people staying in prison longer than needed, but stressing the importance of these peer care roles.  

Communication was also a theme across responses from medical staff, care team members, and incarcerated patients. A lack of trust and effective communication between patients and medical staff was often reported, as was the impact that communication and trust had on the care and patients’ decisions about their health. Failed communication affected patient perceptions on staff credibility and contributed to patient distrust in the system. It also contributed to confusion and uncertainty about their health and care and hence resulted to anxiety and stress, which in turn had a negative impact on mental as well as physical health. High levels of stress and anxiety around medical care was an overarching theme in our patient interviews. Patients and medical staff also shared concern over consistency or longevity of care. Less movement between doctors and facilities and longer patient retention was suggested to build relationships and gain more familiarity with patient health. Consistency of care, toward reducing trust and communication issues that stand as obstacles in medical-patient relationships, was also mentioned. The points above—about the multidisciplinary care team, consistency of care, communication—converged in another topic that often came up: specialized yards, facilities, and even prisons for older incarcerated people. 

Near the end of the group interviews, we asked participants: if spending the final months or years of your life in prison, then what would matter to you most? Some responses underscored care and interpersonal relationships—peer care, respectful care and access to family and peer visits. Others were related to facility design and services, including open units allowing freedom of movement, safe housing (away, for instance, from younger cell mates), access to medical staff around the clock, disability accommodations (e.g., support pillows), a clean facility and quality food. At root were concerns with personhood, autonomy and dignity—precisely the kind of services a proper hospice aims to provide, including holistic care, mental and physical stimulation and spiritual support. 

Conclusion 

Since we began our study, many strides toward improvement in geriatric and palliative care have been made in California prisons. But even as those reforms take place, even in those places where prisons have been made better, where some of the policy recommendations we set out here have already been achieved, it is important not to lose sight of what we learned in this research experience: people would rather die outside the prison in not-ideal conditions than die in better conditions inside. We urge consideration of specific spaces—yards, facilities, and prisons—for older incarcerated people that are staffed by a medical team trained in geriatric and palliative medicine and a custody team trained to be aware of and respect the differences in approach to medical care at the end of life. But freedom remains the core need for those experiencing end of life in prison.  

Related, in closing, it bears emphasis that many of the conditions and issues identified in the report are a consequence of the exceptionally large number of people in California prisons and the long sentences that many people in prisons there serve—many who are older, chronically ill and pose effectively no safety risk. People who, if found suitable, could be released to die outside prison in the presence of family and loved ones. A comprehensive response to the needs and dignity of those reaching the end-of-life in prison therefore involves connecting medical care with second-chance legislation and other reforms that work to address excessive use of the prison. Prison medical spaces should improve only in order to be temporary. 

White Paper “Care in the End

Download it here.

Endnotes:

(i) Cloud D et al. (2023) Public health and prisons: Priorities in the age of mass incarceration. Ann Rev Pub Health 44: 407-428.

(ii) McKillop M and Boucher A (2018) Aging prison populations drive up costs: Older individuals have more chronic illnesses and other ailments that necessitate greater spending. Pew Charitable Trusts (https://www.pewtrusts.org/en/research-and-analysis/articles/2018/02/20/aging-prison-populations-drive-up-costs). See Williams BA et al. (2012) Addressing the aging crisis in U.S. criminal justice health care. J Am Geriatr Soc 60(6): 1150-6.

(iii) Carson EA (2021) Mortality in state and federal prisons, 2001-2019. Washington, DC: Bureau of Justice Statistics. ‘Natural causes’ is placed in quotation marks to recognize that death in prison, especially after have served substantial years inside, is caused in part by having been subjected to the living conditions of a prison, and may have as contributing causes failures in medical care. See Tomczak P and Mulgrew R (2023) Making prisoner deaths visible: Towards a new epistemological approach. Incarceration 4: 1-21. This will differ institution to institution and penal regime to regime, but prisons are environments that accelerate aging and shorten life spans.

(iv) See Gilbert E et al. (2024) How do people in prison access palliative care? A scoping review of models of palliative care delivery for people in prison in high-income countries. Palliative Medicine 38(5): 517-34.

(v) On hospice care in US prisons, see Prost S et al. (2020) Characteristics of hospice and palliative care programs in US prisons: An update and 5-year reflection. American J Hospice & Palliative Medicine 37(7): 514-20.

(vi) Nellis A and Barry C (2025). A matter of life: The scope and impact of life and long term imprisonment in the United States. Washington, DC: The Sentencing Project.

(vii) A crisis of prison conditions and health care can be seen in other US States, in ongoing litigation (for example, concerning the Louisiana State Penitentiary at Angola, in which a federal district court judge found the medical care reflected “callous and wanton disregard”) and proposed legislation (for example, in Connecticut, where investigative journalism prompted congressional discussions about prison health care).

(viii) Across US jurisdictions, spending on prison health care varies widely, with California having the highest expenditure per incarcerated person according to 2015 data, at nearly $20,000, and Louisiana the lowest at just over $2,000, the median across states being approximately $5,700 per incarcerated person per year. Pew Charitable Trusts (2017) Prison health care: costs and quality. Washington, DC.

(ix) Common themes in literature on the embedded care hospice model, more frequent in the USA, include (i) conflict between care and custody, (ii) issues with training; and (iii) the positive impact of peer care for patients, the care team, as well as the peer care workers themselves (see Gilbert et al. 2024).