Many medically complex incarcerated patients in this study did not demonstrate sufficient knowledge to apply for early medical release suggesting that patient education may help expand access to these policies. Moreover, seriously ill patients with knowledge of early medical release may benefit from enhanced psychosocial support given their disproportionate burdens of anxiety and loneliness. Our findings highlight the pressing need for larger studies to assess whether improved patient education and support can expand access to early medical release.

Participants' average age was 64 years, and 89% had more than one chronic illness. Fewer than half (43%) demonstrated the knowledge needed to apply for early medical release and 22% demonstrated no relevant knowledge. Participants with sufficient knowledge were significantly more likely to endorse anxiety (35% vs. 0%, P = .003) and loneliness (65% vs. 30%, P = .017).

A cross-sectional survey of 46 male patients in two state prisons and one large urban jail who had visited a primary care provider at least three times within three months was conducted.

Deaths among incarcerated individuals have steadily increased in the U.S., exceeding 5000 in 2014. Nearly every state has a policy to allow patients with serious life-limiting illness to apply for release from prison or jail to die in the community (“early medical release”). Although studies show these policies are rarely used, patient-level barriers to their use are unknown.

Early medical release policies are a critical component of care planning for incarcerated patients with serious life-limiting illness. They also aim to reduce the high costs of incarcerating seriously ill patients and are associated with very little public safety risk; recidivism rates for those receiving early medical release are 3.5% compared with 41% for former prisoners overall.Yet early medical release is profoundly underutilized.Two recent reports found that early medical release applicants were approved at rates of 3% (2621 requests) and 7% (3030 requests) in samples of federal and state prison populations, respectively.Although many unsuccessful applications for early release are rejected, some patients die while their application is pending. Several studies and government reports suggest that flawed medical eligibility guidelines, unclear procedures, and failure to adequately train and empower medical providers all play a role in the underutilization of these policies.To date, however, patient-level barriers to early medical release have not been studied. To address this knowledge gap, this study assessed knowledge and attitudes regarding early medical release among incarcerated patients with high medical needs.

The growing population of incarcerated patients of advanced age or with serious illness has brought renewed attention to policies originated during the AIDS epidemic that allow some patients to apply for early release from prison or jail to receive care and die in the community (“early medical release”). These policies vary by jurisdiction but generally fall into two categories: “compassionate release” for patients with a terminal illness and “medical parole” for gravely ill or disabled patients who have high-intensity nursing care needs but may live for years in a state of poor health. In addition to medical criteria, many early medical release policies set a minimum age for eligibility and all require a multistage review process during which criminal justice officials consider additional factors such as the length of sentence served and the patient's estimated public safety risk.

The number of deaths among incarcerated people in the U.S. has increased every year that the Bureau of Justice Statistics has tracked these data and now exceeds 5000 annually.Nearly nine in 10 (88%) such deaths are due to medical illness (most commonly cancer, heart disease, or liver disease), reflecting the rapid aging of the incarcerated population.Despite these trends, palliative care services are typically limited in jails and prisons and most correctional facilities are not optimally designed to provide community-standard patient-centered care for patients with life-limiting illness.

Sociodemographic, health, geriatric, and social determinants of health factors were analyzed using descriptive statistics. Knowledge of early medical release policies was determined by consensus of three researchers based on responses to the aforementioned six questions. Chi-squared tests were used to identify associations between knowledge of early medical release and sociodemographic, health, geriatric, and social factors. Study data were collected and managed using REDCap electronic data capture.

“Early medical release” policy was defined as any state or correctional policies that provide for early release from prison/jail for serious life-limiting illness or grave physical disability. Knowledge of early medical release was defined as demonstrating the minimum information needed to make use of the policy, including knowing that it 1) is a policy to provide early release for medically eligible individuals and 2) can be requested by speaking with a correctional medical provider, correctional official, or legal counsel. Knowledge was assessed using two closed-ended and four open-ended questions:

Social factors included health literacy (a response of somewhat or less to “How confident are you filling out medical forms by yourself?”),poor trust in correctional health care providers (selecting “You do not trust the prison health care staff” as a factor influencing communication with their provider), and lack of social support inside and outside of prison/jail (defined as having no friends or family or having friends or family who could be relied on for a serious problem only “some,” “a little,” or “not at all”).

Geriatric conditions included multimorbidity (having two or more chronic medical conditions) and functional impairment (reporting difficulty with one or more activities of daily living [dressing, bathing, eating, transferring, and toileting]). Participants were also asked if they had experienced a fall within the past month and if any reported fall resulted in an injury requiring medical treatment. Loneliness, a risk factor for premature mortality and depression, was measured using the validated three-item loneliness scale.

Self-rated health was measured using a validated item from the SF-12 that has been used with other vulnerable populations.Chronic conditions were assessed by self-report using questions from the nationally representative Health and Retirement Study.Self-report of medical conditions is well validated in older and medically vulnerable populations, including individuals who are homeless.Serious mental illness was defined as a diagnosis of any major depressive, manic, or psychotic disorder using the Bureau of Justice Statistics definition.Positive screens for depression and anxiety were defined as a score of 4 or higher on the Patient Health Questionnaire-2 and Generalized Anxiety Disorder-2 scale, respectively.Cutoffs of 4 were used to improve specificity (compared with the standard cutoff score of 3) in acknowledgment of the known stressors of living in the unique correctional setting.

Self-reported sociodemographic characteristics included age, race, and educational attainment. Risk of post-release homelessness was assessed using the question: “If you were released tomorrow, would you have someone to stay with or would you be homeless?” Criminal justice factors included whether participants were serving a life sentence and the number of years incarcerated.

Consistent with relevant federal regulations and ethical considerations, participants were compensated for their time with $10 deposited to their commissary account.The Human Research Protection Program at the University of California, San Francisco, approved this study.

The Chief Medical Officer at each facility was given the aforementioned criteria and referred potential participants to study researchers who then approached each individual to gauge their interest in the study. For those who expressed interest, consent was obtained using the teach-to-goal method, which has been used in correctional research and described elsewhere.All interviews were conducted in a private room. The questionnaire included closed-ended and Likert scale questions and several open-ended items. Responses to open-ended questions were transcribed by interviewers (recording devices were not permitted in the facilities).

This cross-sectional, in-person survey study enrolled 46 incarcerated men in two state prison systems and one large urban jail. Study eligibility included speaking English and having seen a correctional physician at least three times in the three months before participation. Three or more physician visits in three months were used to identify patients with serious illness without disclosing health status as a reason for their invitation to participate in the study. This study was part of a larger research project on advance care planning in correctional settings. Only men were enrolled in this study because men represent 93% of the incarcerated populationand including additional facilities to enroll women was beyond this study's scope.

A positive screen for anxiety (35% vs. 0%, P = .003) and loneliness (65% vs. 30%, P = .017) were each significantly associated with having knowledge of early medical release policies. Participants with a life sentence were less likely to demonstrate knowledge of early medical release than participants without a life sentence (50% vs. 19%, P = .05), Table 1

Approximately three in four (76%) participants said they would want to apply for early medical release if they were seriously ill. The most common reasons cited were to die surrounded by friends and family and the belief that they would receive better care in the community. Among those who said they would not seek medical release if seriously ill, the reason most commonly given was that they believed they were ineligible based on criminal justice factors (e.g., due to a life sentence without the possibility of parole). A small number believed that early medical release was not actually granted to applicants and so perceived that any application would be fruitless ( Table 2 ).

Fewer than half of participants (43%) demonstrated the knowledge needed to request early medical release. Of the 26 participants who did not have adequate knowledge, 15 (33% of the overall sample) demonstrated partial knowledge of early medical release, including 13 (28% overall) who understood the medical release policy but did not know how to start the process ( Fig. 1 ). The remaining 10 participants could not accurately describe early medical release policies.

Distribution of early medical release knowledge. “Medical release knowledge” was determined based on participants' response to three open-ended questions asking them to describe 1) what the policy is, 2) who is eligible to use it, and 3) how they would initiate the process. To be assessed as having knowledge, participants' responses had to convey that medical release is a policy to provide early release from incarceration for individuals with a serious or terminal illness and that for incarcerated individuals with serious or terminal illness, medical release can be initiated by speaking with a prison-based medical provider, correctional official, or legal counsel.

Fig. 1 Distribution of early medical release knowledge. “Medical release knowledge” was determined based on participants' response to three open-ended questions asking them to describe 1) what the policy is, 2) who is eligible to use it, and 3) how they would initiate the process. To be assessed as having knowledge, participants' responses had to convey that medical release is a policy to provide early release from incarceration for individuals with a serious or terminal illness and that for incarcerated individuals with serious or terminal illness, medical release can be initiated by speaking with a prison-based medical provider, correctional official, or legal counsel.

Most (65%) reported being in poor or fair health and most (89%) had more than one chronic health condition ( Table 1 ). More than one in three (37%) reported activities of daily living impairment(s). Loneliness (50%) and lack of social support inside prison/jail (67%) were common while 20% had a positive screen for anxiety. Thirty-seven percent of participants reported low health literacy, and 46% expressed poor trust in their correctional health care providers.

Participants had an average age of 64 years; 63% were white, 17% black, and 10% Native American or Alaskan Native. One in three (33%) were serving a life sentence ( Table 1 ).

Of total of 46, those who answered “yes” to having friends and family inside or outside of prison but did not answer the follow-up question are coded as having no social support.

l Of total of 46, those who answered “yes” to having friends and family inside or outside of prison but did not answer the follow-up question are coded as having no social support.

A response of “some” or less to the question: How much can you rely on friends and family outside of [prison/jail] if you have a serious problem?

k A response of “some” or less to the question: How much can you rely on friends and family outside of [prison/jail] if you have a serious problem?

A response of “some” or less to the question: How much can you rely on friends and family outside of [prison/jail] if you have a serious problem?

j A response of “some” or less to the question: How much can you rely on friends and family outside of [prison/jail] if you have a serious problem?

A response of “You do not trust the prison health care staff” as a factor holding them back from talking with their doctor about their care wishes if they were to get very sick.

h A response of “You do not trust the prison health care staff” as a factor holding them back from talking with their doctor about their care wishes if they were to get very sick.

A response of “somewhat” or less to the question: “How confident are you filling out medical forms by yourself?”

g A response of “somewhat” or less to the question: “How confident are you filling out medical forms by yourself?”

A response of “poor” or “fair” to the question: “In general, would you say your health is excellent, very good, good, fair, or poor?”

b A response of “poor” or “fair” to the question: “In general, would you say your health is excellent, very good, good, fair, or poor?”

Defined as the minimum information needed to make use of the policy, including knowing that medical release 1) is a policy to provide early release from incarceration for individuals with a serious or terminal illness and 2) can be initiated by speaking with a prison-based medical provider, correctional official, or legal counsel.

a Defined as the minimum information needed to make use of the policy, including knowing that medical release 1) is a policy to provide early release from incarceration for individuals with a serious or terminal illness and 2) can be initiated by speaking with a prison-based medical provider, correctional official, or legal counsel.

During the study period, 54 people in prison or jail were referred to researchers by health providers. Of these, six (11%) declined and four (4%) could not provide informed consent using the teach-to-goal method, resulting in a final sample of 46 participants.

Discussion

In this study of early medical release knowledge and attitudes among 46 medically vulnerable incarcerated men, fewer than half (43%) knew enough about their state's early medical release policies to initiate a request if they were or became medically eligible. Of those without adequate knowledge, nearly half knew nothing about the policy. Among those who had heard of it, a majority could not describe how to initiate the application process. Health status did not appear to correlate with knowledge; for example, those with life-limiting illnesses (e.g., cancer, end-stage liver disease) were equally represented in the groups who did and did not know about early medical release. When participants were given the definition of early medical release, most (76%) endorsed a desire to apply for it. These findings suggest that patient education may be an important factor in addressing the underutilization of early medical release policies.

23 Gomes B.

Calanzani N.

Gysels M.

Hall S.

Higginson I.J. Heterogeneity and changes in preferences for dying at home: a systematic review. , 24 Gruneir A.

Mor V.

Weitzen S.

Truchil R.

Teno J.

Roy J. Where people die: a Multilevel approach to understanding Influences on site of death in America. , 25 Tang S. When death is imminent - where terminally ill patients with cancer prefer to die and why. 26 Bolano M.

Ahalt C.

Ritchie C.

Stijacic-Cenzer I.

Williams B. Detained and distressed: Persistent distressing Symptoms in a population of older jail inmates. This study's findings also suggest that incarcerated patients considering or near eligibility for early medical release may benefit from additional psychosocial support. Among the 76% of participants who said they would like to apply for early medical release if eligible, the most commonly cited reason was a desire to die at home in the company of family. This wish is consistent with well-documented preferences of community-dwelling older adults who express a wish to die at home rather than in an institution (e.g., hospital, nursing home).In addition, participants with knowledge of medical release were more likely to endorse loneliness and anxiety possibly reflecting the common occurrence of existential distress, including a fear of dying while incarcerated, that has been documented in this population.As incarcerated individuals approach eligibility for medical release, referral to mental health care and/or greater access to peer or family support may be of benefit. However, more research is needed to better understand the psychological effects associated with early medical release, including whether psychological or existential distress reduces the number of applicants.

27 Howerton A.

Byng R.

Campbell J.

Hess D.

Owens C.

Aitken P. Understanding help seeking behaviour among male offenders: qualitative interview study. , 28 Mitchell J.

Latchford G. Prisoner perspectives on mental health problems and help-seeking. , 29 Pont J.

Stöver H.

Wolff H. Dual Loyalty in prison health care. , 30 Shalev N.

Chiasson M.A.

Dobkin J.F.

Lee G. Characterizing medical providers for jail inmates in New York State. A lack of trust in correctional health care providers identified by nearly half of the patients in this study, and in correctional systems more broadly, may also undermine early medical release policies. Such mistrust is well documented in correctional health care settingsand suggests a need to normalize applications for early medical release among potentially eligible patients, ensure that medical release applications are acted on in a timely and transparent fashion and consider creative approaches to increasing access such as engaging an independent advocate to facilitate applications (e.g., via a Pro Bono Program) or filing early medical release applications for eligible patients on an “opt-out” basis.

Our findings should be interpreted in the context of several limitations. This was a relatively small, exploratory study that used a convenience sample. As a result, the precision and generalizability of our findings should be considered preliminary. However, this is the first multistate study to enroll incarcerated older and/or seriously ill participants to assess their knowledge, attitudes, and perspectives about early medical release policies. Our finding that at least some patients who likely are (or will soon be) eligible for early medical release have limited or no knowledge of early medical release suggests a critical opportunity for patient education in this area and a pressing need for research to expand our knowledge about patient-level interventions that could improve access to early medical release. Although we used a proxy for serious illness (having three or more visits with a physician within three months), participants had overall high rates of multimorbidity and geriatric conditions, suggesting that knowledge of early medical release policies is important in our study participants. However, it is possible that our sample included some individuals who were in relatively good health, and as a result, our findings may under-report the lack of knowledge about early release policies among the seriously ill.