Skip to main content
SearchLoginLogin or Signup

Dying in Prison: End-of-Life Care Services in a State Correctional Facility

This is the online version of the article. To access a print version with page numbers for citation and reference purposes, select "Download" to the right and then choose "Formatted PDF."

Published onJan 19, 2023
Dying in Prison: End-of-Life Care Services in a State Correctional Facility
·
history

You're viewing an older Release (#1) of this Pub.

  • This Release (#1) was created on Jan 19, 2023 ()
  • The latest Release (#2) was created on Apr 23, 2023 ().

ABSTRACT

The aging inmate population in American prisons has noticeably increased, contributing to a more significant number of offenders who will die in prison, thus forcing correctional facilities to aid in caring for prisoners at the end of life. Two common responses have emerged to deliver adequate healthcare to inmates, including hospice programs and End-of-Life (EOL) care services. This study aimed to explore the nature of EOL care in a state prison by interviewing correctional administrators, correctional officers, and relevant medical personnel (N=17). The current study provided insight into the inclusion criteria for inmates who utilized EOL care in the prison system and the services available. It also discussed how EOL care has evolved since its inception and the future direction of EOL care services in the correctional system.

Keywords: End-of-Life care, palliative care, aging inmates


The aging inmate population comprises the fastest-growing demographic in American prisons (Carson & Sabol, 2016; McKillop & Boucher, 2018; Skarupski et al., 2018, Williams et al., 2012). From 1999-2016, the number of individuals aged 55 and older increased by 280 percent, while the number of younger incarcerated adults grew by only 3 percent (McKillop & Boucher, 2018). In 2020, 14% of incarcerated men and 9% of incarcerated women were 55 and older. Estimates indicate that by 2030, one-third of the incarcerated population will be considered aging (Skarupski et al., 2018).

The aging inmate population continues to grow primarily due to harsh sentencing regimes, including mandatory minimum sentences, "three-strikes" laws, and life sentences (Nowotny, et al., 2016). Further, baby boomers are becoming seniors, contributing to the aging incarcerated population (Luallen & Cutler, 2017; Stal, 2013). Unhealthy lifestyles coupled with inadequate healthcare lead to the earlier onset and rapid progression of chronic health conditions, especially among the aging population (Skarupski et al., 2018; Williams et al., 2012). Older incarcerated individuals have high rates of unaddressed behavioral health concerns, undiagnosed or unmanaged chronic illness, substance use, and addiction prior to incarceration (Dubler, 1998; Freudenberg, 2001; Novisky, 2018). As a result, older inmates use more prison healthcare services when compared to younger inmates and are more likely to require treatment outside of the prison facility in community hospitals (Williams, 2006).

Prisons have become home to inmates with more significant and complex healthcare needs, including those requiring palliative care and other treatments as they prepare for the end of life. Although there is no widely accepted definition for EOL care, it is often synonymous with hospice or palliative care. EOL is a model of treatment for inmates who are unlikely to be released before their deaths and provided with effective pain management and other physical, emotional, psychological, and social needs (Maull, 1998).

Studies that focused on EOL services for incarcerated persons have discussed the need for hospice and EOL care in correctional settings (Stone et al., 2012; Williams et al., 2012), perceptions and attitudes of those who work with terminally ill patients (Cloyes et al., 2017; Penrod et al., 2014; Steely Smith et al., 2021), and considerations for implementation of EOL programming, specifically related to those involving inmate caregivers (Cloyes et al., 2014; Cloyes et al., 2017; Depner et al., 2017; Supiano et al., 2014). There is a scarcity of research that has focused on the successful implementation of prison EOL services and how these programs affect inmates as patients. The current literature that describes incarcerated older adults' health and healthcare needs is limited and not widely disseminated among non-prison healthcare providers (Ahalt et al., 2012; Skarupski et al., 2018). Thus, effective models of elderly care for this specific incarcerated population remain largely unknown.

Therefore, this study aimed to examine the nature of EOL care in a state prison system by interviewing 17 correctional administrators, correctional officers, and medical personnel. The current study provided insight into the inclusion criteria for inmates to utilize EOL care in this particular state prison system and the services available to inmates. Further, we report how EOL care has evolved since its inception and the future direction for EOL care services in the correctional system. The findings from this study can inform policymakers, correctional administrators, and healthcare providers to understand professionals' perceptions of providing EOL services for prisoners and what roles various professionals play in implementing such services. Correctional administrators can then use this information to refine correctional healthcare, which may lead to more tailored patient care for dying inmates.

EOL Care Services

Correctional institutions face significant challenges in providing adequate healthcare to those who are chronically and terminally ill. Generally, when an individual is terminally ill, the primary foci of health care providers include providing patients with a dignified death in which pain and discomfort are minimal. This allows the patient and their family to have input and control in the decision-making process and assist with acceptance and closure among those affected by the impending death (Burles et al., 2016). Although primary principles of EOL care emphasize comfort, control, and closure (Burles et al., 2016) these characteristics are contradictory to the primary objectives of incarceration which are to incapacitate, punish, and house the incarcerated population (Maschi et al., 2014). The goal of palliative services is to provide patient-centered care and the fundamental right to die with dignity (Humans Rights Watch, 2012).

Despite these competing goals, EOL programs in prisons slowly began to emerge in the decade following Estelle v. Gamble (Marshall, 1976). This 1976 Supreme Court case established that incarcerated individuals have a constitutional right to medical care, and correctional institutions are mandated to treat incarcerated individuals' serious medical needs. Later, in 1996, the American Correctional Association required that prisoners receive healthcare equivalent to community standards, including services for terminally ill inmates (Craig & Craig, 1999; Maull, 1998). The most recent review of 148 correctional institutions in the United States indicated that these facilities provide some EOL service (Prost et al., 2020). Carceral settings that offered these programs served as an example of humane models of EOL care that balanced the competing demands of prisoner confinement and public safety (Byock, 2002) and proved that institutions could successfully implement compassionate care programs.

Criteria for Receiving EOL Care Services

Many correctional facilities share similar criteria as community-based EOL programs. The universal condition is that the inmate must be terminally ill (Hoffman & Dickinson, 2011; Phillips et al., 2009; Yampolskaya & Winston, 2003). Generally, inmates with a life expectancy of six months or less are eligible for EOL services or prison hospice programs; however, some facilities admit inmates with life expectancies of up to one year (Hoffman & Dickinson, 2011; Yampolskaya & Winston, 2003). Unlike community hospice programs, prison hospices likely require termination of curative treatment as a criterion for EOL care, thus relinquishing the administration of advanced life-saving medical measures (Hoffman & Dickinson, 2011). Some prisons require inmates to sign do-not-resuscitate (DNR) documentation before they are eligible to enter EOL programs (Mezey et al., 2002; Wion & Loeb, 2016). Finally, some programs stipulate that inmates be cognizant of their prognoses and provide consent for admission into EOL programs (Hoffman & Dickinson, 2011).

Services Provided by EOL Care

Many resources are required to care for and secure terminally ill inmates, which can strain state and federally-operated prisons (Gorman, 2008; Schaefer et al., 2022). Most prisons forgo a compassionate release option and provide hospice or EOL services to terminally ill patients. These programs focus on providing care and symptom control using a multidisciplinary and holistic approach to treating inmates (Maschi et al., 2014). The National Commission on Correctional Health Care (NCCHC) maintains the standard of care for terminally ill inmates through pain management, possible care in a community setting, staff training, and informing the inmate of their option to participate in EOL care, if available. The main goal of NCCHC is to provide services that meet the definition of a 'good death' (Burles et al., 2016; NCCHC, 2008), which consists of effective pain control, dignity, and a supportive environment of family, friends, and staff (Burles et al., 2016).

A review of 69 known hospice prison programs indicated an increasing proportion of elderly inmates. Yet, the average daily population of EOL care programs remains relatively low, ranging from zero to fourteen inmates, with an average of 2.43 inmate patients (Hoffman & Dickinson, 2011). Most correctional facilities can house between one and nine inmate patients. Some institutions report they can accommodate an unlimited number of beds for terminally ill inmates, while some can only care for ten to twenty inmate patients at a time (Hoffman & Dickinson, 2011). Much like the broader community, hospice and EOL care are delivered in diverse settings in correctional facilities. Institutions sometimes offer EOL care in a separate area of the infirmary (Supiano et al., 2014), in housing units (Loeb et al., 2013), or day programs outside of prison (Turner et al., 2011).

Some correctional facilities that offer EOL services to inmates afford certain privileges to dying inmates and their families. For instance, correctional institutions with hospice programs provide terminally ill inmates with psychological and spiritual counseling (Hanson, 2017; Yampolskaya & Winston, 2003). Counseling is usually made available by members of an interdisciplinary team such as clergy, social workers, and psychologists (Burles et al., 2016; Hanson, 2017). The goal of counseling is to keep inmate patients free of pain and anxiety and to help them accept the inevitable. While some facilities do not provide extra privileges for those who are near EOL, others allow terminally ill inmates access to certain foods, television and radio, and to keep personal items at their bedside (Yampolskaya & Winston, 2003). Some EOL services even promote and facilitate contact with families through writing letters and other forms of communication (Linder & Meyer, 2009; Yampolskaya & Winston, 2003). These multidisciplinary teams help inmates prepare emotionally for their deaths and extend services to their families to cope with their loved one's death (Hoffman & Dickinson, 2011).

Further, for most correctional institutions, visitation policies are typically lax for dying inmates. For example, Hoffman and Dickinson (2011) found that in 29% of EOL programs sampled in their study, non-incarcerated adult family members are allowed to visit daily or near-daily, regardless of the inmate patient's condition. Six facilities allowed daily visits as the patient's condition worsened, and five institutions reported unlimited visits as requested by adult family members (Hoffman & Dickinson, 2011). For family members under the age of 18, visitation policies were mixed. Some facilities allowed children to visit daily as long as they were accompanied by a guardian and other correctional facilities never permitted children to visit (Hoffman & Dickinson, 2011). Although most institutions are known to relax their visitation polices for dying inmates, others utilize Skype or other forms of conference videoing as an alternative to face-to-face-visitation when family members are unable or not permitted to visit (Loeb et al., 2014). Some facilities also hold funeral or memorial services for deceased inmates to help other inmates grieve the loss of a friend and to demonstrate to other inmates that their lives are still valued, regardless of their mistakes (Yampolskaya & Winston, 2003).

Multidisciplinary and Interdisciplinary EOL Care Teams

Similar to community hospice and EOL care programs, prison EOL care programs are multidisciplinary in nature to provide the most effective care for patients. A customary prison EOL care team is comprised of correctional officers, social workers, clergy members, dieticians, inmate workers, psychologists, physician assistants, nurses, physicians and other healthcare professionals, and community volunteers (McParland & Johnston, 2019; Wion & Loeb, 2016). Social workers are advocates for inmates to provide counseling and other resources (Wright & Bronstein, 2007a). Dieticians monitor inmates' nutritional status by making dietary and supplement recommendations and ensuring patients receive preferred foods (Wion & Loeb, 2016). Correctional officers are responsible for any inmate transportation and security (Wright & Bronstein, 2007a) and clergy members are often responsible for funeral arrangements (Wright & Bronstein, 2007a). Some EOL programs send cards and letters to family members after their loved ones have passed and refer them to community-based grief counseling (Hoffman & Dickinson, 2011).

These interdisciplinary team members meet regularly to coordinate and revise inmate patients' treatment plans as needed. Hoffman and Dickinson (2011) reported 32% of their sample had their interdisciplinary team meet as needed, 24% met weekly, 10% met bi-weekly, and 22% met once a month. The EOL care team is responsible for providing healthcare interventions, psychosocial and emotional treatment, and psychological and spiritual counseling (Wion & Loeb, 2016). Counseling is usually made available by clergy, social workers, and psychologists (Burles et al., 2016; Hanson, 2017). The goal of counseling is to keep inmate patients free of psychological and emotional pain and anxiety.

These teams operate cohesively to bring the most comprehensive care to inmate patients; however, some of these goals stand in contrast to the more rigid and hierarchal system of most prison environments (Linder & Myers, 2009). Multidisciplinary teams, specifically those with professionals outside of traditional correctional staff, are essential team members as they bridge the gap between inmate care and correctional practices of security and punishment. When inmate patients observe a cohesive team dedicated to their healthcare, it can foster trust and mutual respect between inmates and correctional professionals (Linder & Meyers, 2009).

Barriers to EOL Care Treatment in Prison

Though EOL care services are mandated in correctional facilities (Craig & Craig, 1999; Maull, 1998), the quality of such care depends on correctional institutions overcoming common barriers. Courtwright and colleagues (2008) ascertain bureaucracy and prison policies contribute to barriers in providing effective palliative and EOL care, while Chandler (2003) suggests for-profit or the privatization of prisons and punishment-centered philosophies contribute to lack of programming. Additional barriers include mistrust between staff and inmates, understaffing and safety concerns, and negative public attitudes toward compassionate end of life care for the prison population are the most common barriers to successful implementation (Maschi et al., 2014; Schaefer et al., 2022).

A significant barrier to successful implementation is correctional staff support (Bronstein & Wright, 2007; Hoffman & Dickinson, 2011). Some believe EOL care weakens the punitive aspect of prison and threatens security – a pillar of correctional principles (Bronstein & Wright, 2007). Although some correctional officers are not supportive of EOL care services, correctional officers who have more exposure and knowledge germane to EOL care services are more supportive and favorable of such programs (Bronstein & Wright, 2007; Hoffman & Dickinson, 2011; Steely Smith et al., 2021).

In efforts to overcome mistrust between staff and inmates, some programs have utilized peer-inmate caregivers. For facilities that employ inmate caregivers, hospice coordinators reported that inmate caregivers viewed the experience as transformative, increased inmates' compassion for others, self-esteem, self-worth, and gave them a sense of empowerment (Bronstein & Wright, 2007; Cloyes et al., 2017; Wright & Bronstein, 2007a; 2007b). However, while peer-inmate caregivers can be beneficial for correctional and medical staff, caregivers, and patients, some correctional personnel worry that by utilizing this program it can put inmate patients in a vulnerable position having to rely on other inmates for care (Bronstein & Wright, 2007).   Overall, the method of EOL care encourages compassion and offered an alternative to the notion of the prison system as entirely punitive and showed it to be more humane and caring, supportive of the dignity of the dying patient, and encouraged trust between prison staff and inmates (Wright & Bronstein, 2007a).

While it is unlikely that all barriers can be addressed, cooperation between agencies can be leveraged to mitigate them. Loeb and colleagues (2011) postulated some obstacles could be overcome by establishing community partnerships, adequate staff training, and utilizing individuals who understand the balance between care and custody. For example, social workers play an integral role in the interdisciplinary team and can help navigate what is best for the inmate patient while performing their job duties under the correctional policy (Granse, 2003; Linder & Meyers, 2009). Although the Guiding Responsive Action in Corrections at End of Life (GRACE) project created by the National Hospice and Palliative Care Organization developed standards for correctional institutions EOL services and guidance, effective EOL care is not routinely integrated into healthcare (Ratcliff, 2000). Research of existing programming can help identify best practices to reduce the challenges and barriers to providing the most effective EOL care.

The current study aimed to investigate EOL care services for inmates in state prisons. This state does not have a formal hospice program but delivers EOL care services to inmates in one unit. As there is limited research on stakeholders' perceptions, this study aims to interview correctional and healthcare professionals and examine their perceptions of EOL care services offered to inmates. Correctional administrators can then use our findings to refine correctional healthcare, which may lead to more patient-specific care for dying inmates. Examining correctional healthcare has the potential to benefit not only criminal justice personnel but also contribute to the medical and public health literature. The overarching goal is to inform offender treatment better and help develop healthcare policies for aging inmates.

Research Design

This study aims to examine the nature of EOL care in a state prison to advance the EOL literature and further our understanding of what institutions currently do for inmates' medical needs. We aimed to describe the inclusion criteria for inmates to utilize EOL care and the kind of services that were provided germane to EOL in correctional facilities. Moreover, we assessed how EOL care has evolved since its inception in this state's prison system and the future directions for EOL services. Data were collected from both correctional employees and healthcare practitioners by conducting semi-structured interviews.

We examined EOL care services provided to inmates by assessing the components of EOL care services and how they are provided to prisoners. The study state's Department of Corrections does not have a formal hospice program (in name). Instead, the state's Department of Corrections has one dedicated unit responsible for providing healthcare services to inmates near EOL. This unit serves as a male-only facility that contains a 27-bed hospital that houses all special needs, sick, terminally ill, and dying inmates from across the state.

The study sample consisted of correctional security personnel and healthcare staff who worked closely with inmates deemed chronically or terminally ill, were directly involved in healthcare decision making, or provided healthcare services to inmates in need of EOL care. In total, 17 correctional (n = 8) and healthcare providers (n = 9) were interviewed (see Table 1). This included correctional administrators who were responsible for the maintenance of the prison facility including EOL care services, medical professionals who were responsible for assessing inmates for inclusion into EOL care services, and correctional officers who worked with the general population inmates who eventually needed EOL care services. The sample contained eleven individuals who identified as White and six individuals who identified as African American. Further, we interviewed eight males and nine females who had and average age of fifty. The average number of years working within corrections for our sample was almost eight years.


Table 1. Sample Characteristics

Characteristics

%

N=17

M

SD

Min

Max

Years Working in Corrections

7.8

3.9

1.5

16

Age

50

10.5

35

69

Race

White

65

11

African American

35

6

Gender

Male

47

8

Female

53

9

Occupation Description

Medical Staff

53

9

Correctional Staff

47

8


Data Collection

Researchers acquired data through semi-structured, one-on-one interviews utilizing purposive sampling to recruit participants. For the current research, we sent a recruiting flyer detailing our study to the unit's Deputy Director and the Medical Services Administrator. Participation was purely voluntary, and study participants received no incentives to consent to the interview. Further, the researchers took reasonable steps to protect the participants' privacy and the confidentiality of interview data and assigned inmates a number to maintain their confidentiality.

All interviews lasted approximately one to two hours, and at least two research members were present at every interview. Due to facility restrictions, we were unable to record the interviews. Researchers captured the data through shorthand notetaking style of field notes which a research team member transcribed in detail immediately after each interview. Each interview included questions pertinent to EOL care services, such as how the prison system implemented EOL care, inclusion criteria, and the kind of services the institution made available to inmates. Primarily, interviews focused on understanding the need, importance, benefits, obstacles, and outcomes of creating, implementing, and participating in EOL care services.

Research Questions

The primary research question for this study was: What is the nature of EOL care in this state's correctional system? In addition, this study examines four secondary research questions:

•  What are the inclusion criteria for inmates who utilize EOL care?

•  What services does the institution provide in EOL care?

•  How has EOL care evolved since its inception?

  • What is the future direction for EOL care services in this state's correctional system?

Data Analysis

We utilized inductive methods to identify themes that emerged throughout the coding process (Charmaz, 2006). We used a grounded theory coding and analysis process, which allowed for codes to develop from the data (Charmaz, 2006), rather than using a pre-formulated coding system. The grounded theory approach generates meaning from the data to build theory from patterns and relationships that are identified during the analysis (Charmaz, 2006, Rubin & Rubin, 2012). Although our goal was not to create a theory, we utilized a grounded theory coding and analysis approach to analyze our data (Steely Smith et al., 2021).

Researchers analyzed the data through three phases, including open, axial, and selective coding (Corbin & Strauss, 2015). First, during the open coding phase, we began by reading each of the interview notes holistically to gain a detailed understanding of the data. We then reread the interviews and developed an initial coding matrix of categories. Second, we performed axial coding to confirm the accuracy of the categories. This step involved rereading the narratives/notes and developing more concrete categories. Further, two researchers coded the data independently, but met each other weekly during the axial coding process to discuss their findings. This ensured similarities in coding and an opportunity to examine any discrepancies; however, no differences presented themselves among the researchers' coding schemes. The peer debriefing process enhanced the reliability of the research by increasing intercoder credibility. Third, in selective coding, the categories were developed into a central phenomenon of the study and the coding matrix was finalized. This approach afforded a more comprehensive examination of correctional and healthcare personnel views on the EOL care services provided to inmates.

Results

The purpose of this study was to examine the nature of EOL care in a state prison, specifically to determine the kind of services that are provided to EOL inmates in correctional facilities and the inclusion criteria for inmates to utilize EOL care. Moreover, we assessed how EOL care has evolved since its inception in the state's prison system and future directions for EOL services. Researchers conducted interviews with correctional employees and healthcare practitioners to assess the nature of EOL care services provided by the unit (See Table 2).


Table 2. EOL Care

Inclusion Criteria

Inmate has signed DNR order, is terminally ill and has less than two years to live, diagnosed by a doctor in the free world, and not actively participating in life-saving medical treatments

Services Provided in EOL Care

A multidisciplinary team is used. Medical staff makes rounds daily on patients, pain control, nutritional support, prison chaplain visits and reaches out to inmates’ family, a social worker visits once a week, mental health practitioners make weekly rounds, and flexible visitation hours for family members

Evolution of EOL Care

More medical staff, training, and general resources

Future Direction of EOL Care & Areas of Improvement

Expanding the hospital to include more beds/space and utilizing inmate volunteers as care givers. Training needs to be extended to not just medical staff but to correctional officers. Official protocols need to be put in place for the aftercare process. More personnel need to be hired to treat this increasing special population


Inclusion Criteria for EOL Services

The unit used to identify persons to interview did not have a formalized hospice program. The institution housed terminally ill inmates in the 27-bed hospital unit without an official designation for EOL inmates. Nevertheless, inmates receiving EOL services must meet specific admission criteria. First, an inmate must be diagnosed as terminally ill by a "free world" (outside of the prison and in the general public) doctor. The inmate must have less than two years to live and has ceased all curative, life-saving treatments. Further, the inmate is required to sign a DNR order. While these criteria are necessary to be considered EOL, only the senior medical staff knew these specific requirements and details. Other correctional and medical staff were unsure of all the inclusion requirements since no formal EOL care exists.

Services Provided in EOL Care

The facility's goal was to provide care and symptom control using a multidisciplinary team and holistic approach to treat EOL inmates. For instance, medical staff, including primary physicians, registered nurses, licensed nurses, and certified nursing assistants, made rounds daily on inmate patients to ensure they were comfortable and controlled their pain symptoms. Further, the medical staff ensured they received the necessary nutritional support. Mental health practitioners made weekly rounds to help patients cope with their illnesses and address other psychological needs. The social worker employed by the Department of Corrections visits patients once a week and is responsible for filing applications for compassionate release if inmates are eligible. The parole board decides compassionate release cases. Participants reported that the parole board denied most applications, making it a rare option for EOL inmates in this state. The chaplain attempted to visit inmates daily and was responsible for reaching out to inmates' families and fulfilling any other requests inmates may have. Finally, inmates who were near death had flexible visitation hours for family members. General population inmates were able to receive visits once a week for three hours, while EOL inmates were able to have their family members visit daily. Religious groups from the community also visited EOL inmates and sang, read, or prayed with them.

Overwhelmingly, all participants in our sample, medical and correctional staff (n = 17), were satisfied with the care they provided to the EOL inmate patients. Participant 1 emphasized, "They get great medical care. If I had this care, I would be happy." Participant 5 stated, "I think I always do what I can. I never go home thinking I failed them. I have even gone as far to pray with them as they passed." Participant 12 discussed how the inmates' healthcare was better than her own and noted,

They get it better than you and I do. We have to make appointments with doctors and sometimes can't be seen for months, and in the free world I have to wait, and I pay for my healthcare, while inmates get treated almost immediately.

Regarding receiving special privileges, most of the sample (n = 11) noted and agreed that dying inmates did and should receive privileges such as extra visitation or food preferences. Participant 11 explained,

I would say they deserve it, if they are dying out of town family can come and visit throughout the week. I think it's fine for them to receive the extra visitation. That's how I would want to be treated and it's not a security issue.

Further, many noted how food restrictions were also lax. Participant 6 stated,

Sometimes they do receive special treats. For example, there was one dying patient who for whatever reason wanted a salad. One of the doctors brought them a salad before he passed. So sometimes they receive things like that.

Participant 6 also discussed how medical staff would make popsicles for inmates because most dying inmates seemed to enjoy them. Participant 8 explained how dying inmates might ask for a soda or sweets, and he saw nothing wrong with getting these things for the inmate patients before they passed. Both correctional and medical staff perceived these privileges as making inmates comfortable and helping them die with dignity.

Areas for Improvement

Although all of the participants were pleased with the services and treatment they provided to EOL inmates, they (n = 9) also noted there could be some improvements. Most were concerned with the lack of resources for medical staff or training provided to correctional officers. Participant 4 asserted,

I like taking care of patients, but taking care of inmates is like a niche. It is almost like a third world country, like mission work. There are not extra resources like on the outside, there is limited access onsite. We have no pharmacy, no lab, and it is very restrictive. You have to learn to work with the resources you have.

Without having these resources on site, it took longer than desired for medical staff to receive inmates' medications and results.

Participant 5 conveyed,

The only thing I would suggest is more staff (medical) with palliative care experience, which would be a huge starting point. We do a really good job with what we have but it could be better. If our doctors were not as good as they are, patients would fall through the cracks.

While Participant 5 acknowledged the excellent care provided, they stressed the need for more medical staff to help treat inmates and maintain quality care. Further, Participant 7 explained there was a lot of personnel turnover in corrections, but more so with the medical staff because they sometimes had difficulty following security rules or got personally involved with the inmates. For instance, there are more security protocols while working in prison. Some medical staff had difficulty following or understanding rules, such as why they could not bring in their coffee or provide inmates with another pillow without permission.

Participants 7 and 8 suggested correctional officers should receive training to work with aging inmates, especially for the Special Needs Department (SND). SND is essentially a nursing home unit for inmates who can no longer care for themselves and cannot complete daily activities but do not have a terminally ill diagnosis. Participant 16 explained there was no formalized training for working with aging inmates, but correctional administrators tried to use more experienced correctional officers for those posts. Further, participant 16 stated, "For most officers, working with older inmates is a post they want because it is less hectic." Participants 7 and 8 discussed the need for training to work with aging inmates and training on how to deal with an inmate after they die (the aftercare process). Participant 7 noted,

Everything can be improved, especially procedures for those who are dying such as protocols for what to do while they are passing and when they have passed. This isn't taught in CO (correctional officer) school. There needs to be a unique set of standards and additional training with end of life care in general, but also SND, medical, and disposal.

Participant 8 further proposed,

I would suggest consistent training and protocol, especially what to do following death. Like, another shift might see something different or act different. Some are disrespectful (COs) and difficult to deal with because there is no protocol. Some like to talk shit to the inmates, which becomes an issue with young and untrained COs.

Correctional officers felt it would be beneficial to have all officers trained to handle an inmate's death. For instance, correctional officers discussed how there need to be specific protocols in place so officers know step by step how to proceed (i.e., who to call and notify of the inmate's death, where and how to move the deceased). Further, correctional and medical staff were concerned that the rising aging inmate population resources would deplete and younger officers who lack experience must manage aging inmates and their unique situations.

Evolution of EOL Care and Future Directions

Participants (n = 7) noticed a considerable change in inmates' healthcare since they started working in corrections. These changes were positive overall because they have seen more medical staff hired and more training and resources because of the hospital unit. Participant 13 recalled, "Everything has grown since I've been here and I believe it's going in the right direction. We're getting better quality people and a lot better nurses and doctors." Participant 15 also recognized the more medical services available but noted a lack of staffing. "We have definitely hired more people to maintain all of the medical services available, but it is still not enough medical staffing."

One way to possibly aid in the shortage of medical staff is to use inmate volunteers to help with patient care. The unit recently started an inmate volunteer program with five inmates. These inmates had to meet specific qualifications, such as no/minimal rule violations, and have at least five years until their parole date. This program was voluntary; inmates must pass written exams and a skills portion test. SND utilized inmate volunteers, but most participants wanted their role to build into caring for EOL patients. Participant 2 noted,

We have recently created an inmate assistance program which is still in its infancy but is needed statewide as the inmate population changes and ages and we start seeing inmates as means to provide care. I would love to see inmates involved (with EOL inmates), but we will just have to get there, once we can prove it works, it will expand.

As the inmate volunteer program was still in the early stages of development, participants were enthused to see how it would help the inmate volunteers but also help the medical staff. Participant 1 stated,

Here inmates learn to be compassionate, respectful, and a friend. I think it's a great idea because most of the men come from environments with no work ethics. Also, they are not compassionate without expecting something in return. This program teaches them to be compassionate with expecting nothing in return.

Participant 5 further explained,

Inmate assistance is amazing. Actually, sometimes inmates try to help without being volunteers. It's like a family, it gives the inmates a purpose and helps us (medical staff). It relieves a huge stress. Sometimes we even learn from porters (inmate helpers), like when I first started. It was overwhelming but sometimes they knew more about the patients than I did, especially when the nurse on yesterday wasn't there the next day.

While most participants positively perceived the inmate volunteer program, a few expressed some concerns. Participant 10 explained,

I have high hopes for it. There may be concerns with PREA [Prison Rape Elimination Act] because inmates are touching other inmates. It was the reason they never used inmate volunteers before.

One of the priorities of PREA is to establish a zero-tolerance policy for the incidence of prison sexual assault. Correctional officers may be concerned that having other inmates care for elderly inmates may put a vulnerable population at risk. Participant 13 also expressed apprehensions about the inmate volunteers taking advantage of older inmates by abusing them physically or by other means, such as stealing their property. Participant 13 discussed how taking care of older inmates was the medical staff's responsibility, not other inmates.

Other than discussing the possibility of using inmate volunteers for EOL patient care, participants noted the possibility of expanding the hospital. The hospital has 27 beds, and there were two to five EOL patients at any time. Structurally, the facility had room for expansion because the premises had a second unused hospital. Participant 9 stated, "I think we'll continue to evolve and hopefully open the other hospital that is not really used. I would like to see expansion." Some participants noted that expansion might not be an option; however, as the prison population ages, more space will be required to accommodate aging inmates and their medical needs.

Discussion

Incarcerated individuals should expect adequate access to quality palliative care similar to that provided to the community. Correctional institutions have begun implementing EOL care services to meet the immense healthcare needs of chronic and terminally ill inmates. This study aimed to explore the nature of EOL care in a state prison by interviewing correctional administrators, correctional officers, and relevant medical personnel. Findings provide insight into the inclusion criteria for inmates who utilize EOL care in this state's prison system and the current services available. Although the state's Department of corrections does not have a formal hospice program, one unit is responsible for providing inmates with EOL care services for all sick and dying inmates in the state.

Much like formalized hospice programs, the Department of corrections delivers EOL care services to inmates who meet a series of criteria. These criteria include being diagnosed as terminally ill by a physician, having less than two years to live, not actively engaged in life-saving measures, and having a DNR order in place. Overall, the goal of the Department of Corrections employees is to provide dying inmates with a dignified death and bring them peace during their final moments. This overarching goal is made possible through the various services offered to terminally ill prisoners. Inmates near end-of-life are cared for by a multidisciplinary team and afforded pain control to make them as comfortable as possible. Moreover, inmates receive nutritional support and mental health counseling and can receive visitations from family members daily.

Additionally, this study examined how EOL care has evolved since its inception and the future direction of EOL care services. Participants acknowledged that the Department is making positive changes related to healthcare services. These changes encompassed hiring and retaining more medical staff, providing specialized training to medical staff, and an increase in general medical resources. Notwithstanding these significant improvements, participants also discussed to keep up with the aging inmate population and their medical needs, the Department of Corrections for this state needs to expand both the hospital and the special needs unit. Training must also be extended to medical staff and correctional officers on accommodating dying inmates. Training should include basic principles of EOL care and the services available for aging inmates who need such services.

Correctional staff that has more experience and knowledge relative to EOL care are more supportive of such programs and provide inmates with the compassion and empathy that aligns with goals intending to provide inmates with a dignified death (Bronstein & Wright, 2007; Hoffman & Dickinson, 2011; Steely Smith et al., 2021). Official protocols also need to be put in place on how to deal with the responsibility of inmates' deaths (the aftercare process). For instance, participants discussed the need for training on what to do immediately after an inmate passes away. The aftercare process training would include who to call after an inmate passes away and how to move the body out of the hospital unit. Further, institutions should hire more personnel to treat this increasingly specialized population.

One possible solution to lessen the burden of lacking medical staff is to utilize inmate volunteers. The unit recently approved an inmate volunteer program that trains inmates on caring for SND inmates who can no longer care for themselves. Inmate volunteers help move patients, feed patients, and change and bathe them. Most of the participants interviewed perceived the inmate volunteer program to be beneficial to the volunteers, the inmates they are assisting, and the medical staff. Through this program, inmate volunteers could learn a new skill, compassion for others, resulting in increased medical staff capacity and ability to provide patients with more personal medical attention (Bronstein & Wright, 2007; Cloyes et al., 2017; Wright & Bronstein, 2007a; 2007b). While most participants considered the inmate volunteer program a needed improvement, a few participants shared some concerns. These concerns included possible PREA violations and inmate volunteers taking advantage of older inmates. In addition, some correctional staff felt employing this program would put inmate patients in a vulnerable position (Bronstein & Wright, 2007). Currently, the institution utilizes inmate volunteers only in the special needs unit; however, more program evaluation should occur, as many participants envision integrating inmate volunteers within EOL care for terminal inmates.

In addition to employing the inmate volunteer program for EOL services, participants also felt the future directions included expanding the hospital to include more beds. Some participants discussed the possibility of having a separate unit outside the hospital for just EOL care inmates. Participants felt with the aging inmate population, the facility would have no choice but to expand the hospital and the SND unit. Furthermore, with these physical expansions, the institution would need to hire additional medical staff.

As with all research, there are several limitations. First, a lack of random sampling limits the study's external validity, inhibiting us from generalizing our findings to a larger population; however, this was not our intention. We purposely sought out individuals who understand EOL care services provided to inmates and interact with inmates who utilize these services as part of their job responsibilities. The study was exploratory; thus, we placed more emphasis on internal than external validity. The sample bias present is no more than what would exist in other qualitative research. Also, exaggeration could occur in professional narratives, as we ask specific questions about their job responsibilities and how well they think they perform these duties in providing inmates with healthcare services. Further, we were not allowed to record the interviews; however, two researchers were present during the interviews. One was explicitly responsible for notetaking and capturing quotes, while the other took shorthand notes and led the interview.

Implications

The extant literature describing incarcerated older adults' health and healthcare needs is limited and not widely disseminated among non-prison healthcare providers (Ahalt et al., 2012; Skarupski et al., 2018). As a result, effective models of care for the aging inmate population remain largely unknown. Nevertheless, the findings from this study can inform policymakers, correctional administrators, and healthcare providers to understand professionals' perceptions of providing EOL services for prisoners and what roles various professionals play in implementing such services.

Correctional administrators can then use this information to refine correctional healthcare, which may lead to more tailored patient care for dying inmates in this particular state. Our findings indicate both correctional and medical staff, while having different job responsibilities, agree that the institution should provide inmates with a dignified death. Participants felt the quality of their care was parallel to that provided to individuals in a free society; however, improvement is possible in several areas. First, participants discussed the need for more medical staffing and resources. While significant positive advances occurred since most participants started working there, the increasing aging inmate population has strained their current staff and resources. Further, many discussed the need to train correctional officers to manage aging inmates in the SND unit and the hospital. Presently, there is no formal training for officers, but rather the administration places older and more experienced correctional officers to work with these special populations. Additionally, participants discussed the need for official protocols and training on dealing with the aftercare process.

Finally, for future research, it is crucial to examine the inmate volunteer program and its effectiveness to determine if this program is also suited for aiding EOL inmates. If the institution offers additional training to correctional officers, the training and its usefulness should also be assessed. Moreover, our study addressed only the male facility that provides healthcare services to male inmates in the state. To our knowledge, female inmates in the state do not have a designated institution with a licensed hospital. Therefore, we assume the state treats EOL female inmates in community hospitals, releases them on compassionate release, or perhaps there have been a minimal number of females who currently require EOL services. These questions are beyond the scope of the current study, but future research should consider these issues and questions. This study provided much-needed insight into EOL care for male inmates in a state prison and has shed light on the perceptions of correctional officers and medical personnel.

References

Ahalt, C., Binswanger, I. A., Steinman, M., Tulsky, J., & Williams, B. A. (2012). Confined to ignorance: The absence of prisoner information from nationally representative health data sets. Journal of General Internal Medicine27(2), 160-166.

Bronstein, L. R., & Wright, K. (2007). The impact of prison hospice: Collaboration among social workers and other professionals in a criminal justice setting that promotes care for the dying. Journal of Social Work in End-of-Life & Palliative Care2(4), 85-102.

Burles, M. C., Peternelj-Taylor, C. A., & Holtslander, L. (2016). A ‘good death’ for all?: Examining issues for palliative care in correctional settings. Mortality21(2), 93-111.

Byock, I. (2002). Dying well in corrections: Why should we care? Journal of Correctional Health Care9(2), 107-117.

Carson, E. A., & Sabol, W. J. (2016). Aging of the state prison population. Bureau of Justice Statistics, US Department of Justice.

Chandler, C. (2003). Death and dying in America: The prison industrial complex's impact on women's health. Berkeley Women's Law Journal18, 40-60.

Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative research. London, England: SAGE.

Corbin, J., & Strauss, A. (2015). Basics of qualitative research: Techniques and procedures for developing grounded theory (4th ed.). Thousand Oaks, CA: Sage.

Courtwright, A., Raphael-Grimm, T., & Collichio, F. (2008). Shackled: The challenge of caring for an incarcerated patient. American Journal of Hospice and Palliative Medicine25(4), 315-317.

Cloyes, K. G., Rosenkranz, S. J., Wold, D., Berry, P. H., & Supiano, K. P. (2014). To be truly alive: Motivation among prison inmate hospice volunteers and the transformative process of end-of-life peer care service. American Journal of Hospice and Palliative Medicine31(7), 735-748.

Cloyes, K. G., Rosenkranz, S. J., Supiano, K. P., Berry, P. H., Routt, M., Llanque, S. M., & Shannon-Dorcy, K. (2017). Caring to learn and learning to care: Inmate hospice volunteers and the delivery of prison end-of-life care. Journal of Correctional Health Care23(1), 43-55.

Craig, E. L., & Craig, R. E. (1999). Prison hospice: An unlikely success. American Journal of Hospice and Palliative Care, 16(6), 725-729.

Depner, R. M., Grant, P. C., Byrwa, D. J., Breier, J. M., Lodi-Smith, J., Kerr, C. W., & Luczkiewicz, D. L. (2017). A consensual qualitative research analysis of the experience of inmate hospice caregivers: Posttraumatic growth while incarcerated. Death Studies41(4), 199-210.

Dubler, N. N. (1998). The collision of confinement and care: End‐of‐life care in prisons and jails. The Journal of Law, Medicine & Ethics26(2), 149-156.

Freudenberg N. (2001). Jails, prisons, and the health of urban populations: A review of the impact of the correctional system on community health. Journal of Urban Health,78(2), 214–23.

Gorman, B. (2008). With soaring prison costs, states turn to early release of aged, infirm inmates. In Washington DC: National Conference of State Legislatures.

Granse, B. L. (2003). Why should we even care? Hospice social work practice in a prison setting. Smith College Studies in Social Work73(3), 359-376.

Hanson, A. (2017). Psychiatry and the dying prisoner. International Review of Psychiatry29(1), 45-50.

Hoffman, H. C., & Dickinson, G. E. (2011). Characteristics of prison hospice programs in the United States. American Journal of Hospice and Palliative Medicine28(4), 245-252.

Human Rights Watch. (2012) Old behind bars: The aging prison population in the United States.

Linder, J. F., & Meyers, F. J. (2009). Palliative and end-of-life care in correctional settings. Journal of Social Work in End-of-Life & Palliative Care5(1-2), 7-33.

Loeb, S. J., Penrod, J., Hollenbeak, C. S., & Smith, C. A. (2011). End‐of‐life care and barriers for female inmates. Journal of Obstetric, Gynecologic & Neonatal Nursing40(4), 477-485.

Loeb, S. J., Hollenbeak, C. S., Penrod, J., Smith, C. A., Kitt-Lewis, E., & Crouse, S. B. (2013). Care and companionship in an isolating environment: inmates attending to dying peers. Journal of Forensic Nursing9(1), 35-44.

Loeb, S. J., Penrod, J., McGhan, G., Kitt-Lewis, E., & Hollenbeak, C. S. (2014). Who wants to die in here? Perspectives of prisoners with chronic conditions. Journal of Hospice and Palliative Nursing16(3), 173.

Luallen, J., & Cutler, C. (2017). The growth of older inmate populations: How population aging explains rising age at admission. Journal of Gerontology, 72(5), 888-900.

Maschi, T., Marmo, S., & Han, J. (2014). Palliative and end-of-life care in prisons: A content analysis of the literature. International Journal of Prisoner Health10(3), 172-197.

Maull, F.W. (1998). Issues in prison hospice: Toward a model for the delivery of hospice care in a correctional setting. The Hospice Journal, 13(4), 57-83.

McKillop, M., & Boucher, A. (2018). Aging Prison Populations Drive Up Costs. State Fiscal Health: The Pew Research Center: Washington, D.C.

McParland, C., & Johnston, B. M. (2019). Palliative and end of life care in prisons: A mixed-methods rapid review of the literature from 2014–2018. BMJ open9(12).

Marshall, T. & Supreme Court of The United States. (1976) U.S. Reports: Estelle v. Gamble, 429 U.S. 97. [Periodical] Retrieved from the Library of Congress.

Mezey, M., Dubler, N. N., Mitty, E., & Brody, A. A. (2002). What impact do setting and transitions have on the quality of life at the end of life and the quality of the dying process? The Gerontologist42(3), 54-67.

National Commission on Correctional Health Care (NCCHC). (2008). Standards for health services in prisons. Chicago, IL.

Novisky, M. A. (2018). Avoiding the runaround: The link between cultural health capital and health management among older prisoners. Criminology56(4), 643-678.

Nowotny, K. M., Cepeda, A., James-Hawkins, L., & Boardman, J. D. (2016). Growing old behind bars: Health profiles of the older male inmate populations in the United States. Journal of Aging and Health, 28(6), 935-956.

Penrod, J., Loeb, S. J., & Smith, C. A. (2014). Administrators' perspectives on changing practice in end‐of‐life care in a state prison system. Public Health Nursing31(2), 99-108.

Phillips, L. L., Allen, R. S., Salekin, K. L., & Cavanaugh, R. K. (2009). Care alternatives in prison systems: Factors influencing end-of-life treatment selection. Criminal Justice and Behavior36(6), 620-634.

Prost, S. G., Holland, M. M., Hoffmann, H. C., & Dickinson, G. E. (2020). Characteristics of hospice and palliative care programs in US prisons: an update and 5-year reflection. American Journal of Hospice and Palliative Medicine37(7), 514-520.

Ratcliff, M. (2000). Dying inside the walls. Journal of Palliative Medicine3(4), 509-511.

Schaefer, I., DiGiacomo, M., Heneka, N., Panozzo, S., Luckett, T., & Phillips, J. L. (2022). Palliative care needs and experiences of people in prison: A systematic review and meta-synthesis. Palliative Medicine36(3), 443-461.

Skarupski, K. A., Gross, A., Schrack, J. A., Deal, J. & Eber, G. B. (2018). The health of American’s aging prison population. Epidemiologic Reviews, 40, 157-165.

Stal, M. (2013). Treatment of older and elderly inmates within prisons. Journal of Correctional Health Care19(1), 69-73.

Steely Smith, M., Cooley, B., & Bensel, T. T. (2021). “We are all humans and deserve a decent way to go”: Examining professional’s experiences with providing end-of-life care in correctional institutions. Criminal Justice Review, 47(2), 225-242.

Stone, K., Papadopoulos, I., & Kelly, D. (2012). Establishing hospice care for prison populations: An integrative review assessing the UK and USA perspective. Palliative Medicine26(8), 969-978.

Supiano, K. P., Cloyes, K. G., & Berry, P. H. (2014). The grief experience of prison inmate hospice volunteer caregivers. Journal of Social Work in End-of-Life & Palliative Care10(1), 80-94.

Turner, M., Payne, S., & Barbarachild, Z. (2011). Care or custody? An evaluation of palliative care in prisons in North West England. Palliative Medicine25(4), 370-377.

Williams, B. A., Lindquist, K., Sudore, R. L., Strupp, H. M., Willmott, D. J., & Walter, L. C. (2006). Being old and doing time: Functional impairment and adverse experiences of geriatric female prisoners. Journal of the American Geriatrics Society54(4), 702-707. 

Williams, B. A., Goodwin, J. S., Baillargeon, J., Ahalt, C., & Walter, L. C. (2012). Addressing the aging crisis in US criminal justice health care. Journal of the American Geriatrics Society60(6), 1150-1156.

Williams, J. L. (2006, December). The aging inmate population: Southern states outlook. Southern Legislative Conference, Council of State Governments.

Wion, R. K., & Loeb, S. J. (2016). CE: Original Research End-of-Life Care Behind Bars A Systematic Review. AJN The American Journal of Nursing116(3), 24-36.

Wright, K. N., & Bronstein, L. (2007). Creating decent prisons: a serendipitous finding about prison hospice. Journal of Offender Rehabilitation44(4), 1-16.

Wright, K. N., & Bronstein, L. (2007). An organizational analysis of prison hospice. The Prison Journal87(4), 391-407.

Yampolskaya, S., & Winston, N. (2003). Hospice care in prison: General principles and outcomes. American Journal of Hospice and Palliative Medicine20(4), 290-296.

Contributors

Brooke Cooley Webb, Ph.D., is an assistant professor in the Department of Criminal Justice and Criminology at Ball State University. Her research interests include corrections, institutional management, special populations within correctional facilities, and sex offender behavior and policies. She has published in the Journal of Qualitative Criminal Justice & Criminology, Journal of Crime and Justice, International Journal of Offender Therapy and Comparative Criminology, and Criminal Justice Review, among other journals.

Mollee Steely Smith, Ph.D., is a NIDA-funded T32 postdoctoral research fellow in the Translational Training in Addiction Program at the University of Arkansas for Medical Sciences. Her research interests involve the behavioral health of justice-involved populations, specifically trauma exposure, mental health, addiction, and health care services in carceral settings. She has published in the International Journal of Offender Therapy and Comparative CriminologyHealth & Justice, and Journal of Traumatic Stress.

Tusty ten Bensel, Ph.D., Dr. Tusty ten Bensel is an Associate Dean of the College of Business, Health, and Human Services, as well as the Director of the School of Criminal Justice and Criminology (SCJC) at the University of Arkansas at Little Rock. She is also the Director of the Justice Research Policy Center (JRAP) at UA Little Rock. Her research focuses on hate crimes against special populations, sexual violence and victimization, and program evaluation.

Connections
1 of 4
Comments
0
comment
No comments here
Why not start the discussion?