“We Are All Humans and Deserve a Decent Way to Go”: Examining Professional’s Experiences With Providing End-of-Life Care in Correctional Institutions

Perceptions of EOL Programming

Overall, previous studies that have examined the perceptions and attitudes of professionals who work in the correctional EOL care settings are mixed (Cloyes et al., 2016; Maeve & Vaughn, 2001; Maull, 1998; Penrod et al., 2016; Wright & Bronstein, 2007b). The majority of studies found that staff perceptions were generally positive toward hospice or EOL care; however, some staff expressed that inmates did not deserve compassionate care at the end of their lives. Maull (1998) was the first to examine prison staff perceptions of a newly established hospice program at the Federal Medical Center at Springfield, MO. Although response rates were low, the majority of respondents expressed positive opinions such as the need for such programming, while about 10% of mostly correctional staff expressed negative opinions suggesting inmates did not deserve the care provided to them or to die with dignity. He contended that negative feelings were not only held by correctional officers but also common among nursing staff who worked closely with correctional staff. Maull (1998) further asserted that negative feelings could be influenced by the punitive norms of correctional services.

Similarly, Maeve and Vaughn (2001) found that correctional health nurses tend to view their inmate patients negatively. They suggested that despite nurses’ professional duty to provide care, they maintained negative attitudes toward providing EOL care services for inmates. Suspicion and resentment were noted as common themes, as nurses believed inmates were attempting to manipulate them in providing relief from pain, and some even suggested they believed the inmates deserved the pain they were experiencing. Additionally, Wright and Bronstein (2007b) sought to determine how well EOL programming integrated into the hierarchical prison structure through the perceptions of staff who facilitate the treatment. When examining 14 facilities with hospice programming, they determined that the hospice programming was generally perceived positively among those working in the facilities. They noted, however, that most who viewed the programming negatively were correctional officers who felt that inmates did not deserve to die with dignity. In addition, noncorrectional staff stressed the importance of educating correctional staff about the program, as new correctional staff were more likely to be resistant to the program (Cloyes et al., 2016; Wright & Bronstein, 2007a). Despite this, correctional officers themselves expressed they do not need specific training, as their primary responsibility was to promote safety and security rather than patient care. Correctional officers with greater familiarity with the program were likely to express more positive opinions and support as opposed to those who were less familiar.

Job Satisfaction in EOL Care

A limited number of studies have also examined job satisfaction among those who worked closely with dying inmates, especially given that their satisfaction can affect the quality of care. Job satisfaction is “…a pleasurable or positive state resulting from the appraisal of one’s job or job experiences” (Locke, 1976 p. 1304). Although no study to date has examined job satisfaction of health care professionals and correctional staff who provide care for dying inmates, the factors related to job satisfaction and stress for medical staff working in hospice programming in the community (Cross, 2019; Head et al., 2019; Sanso et al., 2015) and correctional officers (Armstrong et al., 2015; Lambert et al., 2015; Steiner & Wooldredge, 2015) have been well-documented. Clinical professionals specializing in EOL care in the community reported that a source of job stress stems from being repeatedly exposed to pain and suffering of their dying patients (Grunfeld et al., 2005). Studies, however, have acknowledged that some clinical professionals, such as physicians and nursing staff, find providing services to dying patients and their families as a source of job satisfaction (Grunfeld et al., 2005; McConnell et al., 2016).

Little is known about the experiences of health care professionals and correctional staff who provide EOL care for inmates housed in correctional institutions. Correctional officers working with the general population of inmates reported higher rates of job stress, role ambiguity, less control and authority, lack of organizational support, and workplace safety have been associated with job satisfaction (Steiner & Wooldridge, 2015). Role ambiguity has been correlated with job satisfaction and can be experienced by both correctional and medical staff alike, which can also lead to tensions among groups. These issues can stem from the divergence between correctional staff’s primary goal of maintaining a safe and secure environment, while also promoting compassion for dying inmates (Cullen et al., 1985). As for providing EOL care, the goals and obligations of both medical and correctional staff are not the same. It is the correctional officers’ responsibility to ensure the safety and security of the officers, medical staff, as well as other inmates, while the medical staff must do what is medically necessary to treat the patient regardless of security issues (Penrod et al., 2014). Due to the differences in the roles and the potential for ambiguities, it is possible that these conflicts could lead to job dissatisfaction and influence the care and treatment provided to the inmate receiving EOL care (Maeve & Vaughn, 2001).

Although the goals of EOL care with the general public are similar to those implemented in correctional institutions, some scholars have argued current EOL care programming in correctional facilities is difficult to implement because the principles of effective EOL care do not align with the objectives of incarceration (Burles et al., 2016). In relation to role ambiguity, it is argued that prison guard culture promotes the depersonalization of inmates, which provides difficulty when attempting to implement effective hospice programming as compassionate settings can be seen as “coddling” the inmates (Maull, 1998).

As the number of inmates who are aging in prison continues to grow, the need for enhanced EOL care increases. Those who provide daily care for dying patients could offer valuable insights about programming, goals of EOL, expectations, and experiences with the care they provide to inmates. Their professional experiences can enhance the quality and sustainability of prison EOL care programs. Given the limited research on health care and correctional professionals who work with terminally ill inmate patients, the current study expanded beyond understanding the perceptions and attitudes of those who work at EOL units. We sought to understand how health care providers perceived their role in EOL care, the challenges they faced while providing inmates with EOL care services, and job satisfaction working in an EOL care unit. We argued that the internal and external stressors experienced while working with EOL inmate patients could potentially influence the care they provide. In addition, contrasting ideologies of the prisonization culture and compassionate care can cause role ambiguities for those who work in EOL units (Penrod et al., 2016). It could be that due to the stressors, challenges, and role ambiguities health care and correctional staff face working in EOL care units, they need additional resources and training to effectively carry out their roles and responsibilities. With this in mind, for the current study, we conducted one-on-one, qualitative interviews with health care and correctional professionals in a southern state and our data were analyzed using techniques from grounded theory.

Data Collection

The data included semistructured, one-on-one interviews with correctional staff and health care providers. We used a purposive sampling method to recruit participants, specifically focusing on those who worked with inmates receiving EOL care. Eligible participants were recruited through the dissemination of recruitment letters that were sent to correctional staff and health care workers. This led to a sample of 17 correctional and medical staff and all interviews were conducted on-site. Due to correctional facility restrictions, we were unable to record the interviews; therefore, responses were captured through a shorthand note-taking style of field notes and were transcribed in detail immediately after each interview (Emerson et al., 1995). All interviews lasted approximately 60–90 min and at least two research staff were present.

Interviews typically started with demographics questions, followed by questions on job responsibilities, job satisfaction, and the physical, mental, and emotional demands of their employment. For example, we asked, “What are your current job responsibilities as they relate to EOL care services for inmates?” We also asked, “What would you consider to be the emotional demands of your job, if any?” Our next set of questions revolved around program specifics, such as inclusion criteria, available services, goals of the program and how it has evolved, and future direction of providing EOL care in this state’s correctional system. We asked, “What are the inclusion criteria for inmates to utilize EOL care in the prison system?” “What kinds of services are provided at the EOL care unit?” Lastly, these were followed by questions on conflicting ideologies of compassionate care and correctional goals. Participants were asked, “Do you think EOL care services interfere with the goals of correctional facilities? If yes, how so?” All of these questions were broad enough to allow participants to discuss what they felt was most important to them; however, we did use probing questions to refocus the interview when needed.

Data Analysis

We used an inductive, grounded theory approach to analyze our data. The focus of this approach is to generate meaning from the data and build theory from patterns and relationships identified during the analysis (Charmaz, 2006; Rubin & Rubin, 2012). Although our goal was not to create a theory, we were guided by this approach during the coding and analysis of our data. Data were analyzed through a three-phase coding process, which involved open, axial, and selective coding (Corbin & Strauss, 2008). In open coding, interviews were read holistically to determine the broad context of the correctional and health care staff perceived role in providing EOL care for terminally ill inmates. During this phase, information was transferred to a preliminary coding matrix. At this time, interviews were analyzed and coded individually. This process involved a single researcher’s determination of broad overarching themes and preliminary subcategories of each theme. Once researchers finalized their preliminary matrix, the research team met to debrief and discussed each interview to ensure similarities in coding and discussed any discrepancies before moving to the next coding phase. The peer debriefing process enhanced the rigor and reliability of the research by increasing intercoder credibility (Lincoln & Guba, 1985; Norwell et al., 2017). Through discussion, the researcher agreed-upon themes and subthemes and moved into the axial coding phase. In axial coding, interviews were reread to assure that decided upon categories and subcategories were accurately presented within the narratives. Interviews were reread while using a constant comparative approach, which helped narrow the initial coding frame with more definitive categories and subcategories. Through this process, a finalized coding matrix of themes, categories, and subcategories was established (Corbin & Strauss, 2008). Lastly, selective coding was the final phase of the analysis in which categories were merged into one “central” phenomenon of the study (Corbin & Strauss, 2008). The final coding matrix, coding list, and memos were reviewed to determine the central phenomenon or concept of the study.

The Stressors and Challenges in Role Responsibilities

Both medical and correctional staff expressed a number of general stressors that were associated with their respective positions. Six of the medical staff indicated that general stressors were attributed to a lack of resources and five suggested difficulties in balancing care. Over half of the sample indicated that lack of resources was stressful when providing care for inmates, which included lack of beds and rooms for patients. Participants recalled that there were times when they had to move inmate beds into the hallways because there were not enough rooms available for them. This was not surprising given the growing number of terminally ill patients in the state and nationwide (Carson et al., 2020), and that this unit was the only state facility that cared for male inmates with chronic illnesses. Due to a lack of beds and space, some inmate patients were housed in the Special Needs Department within the same facility. This required medical staff to move between the prison hospital unit and the Special Needs Department to ensure that all EOL inmates were receiving appropriate care. As a result of increasing need for chronic inmate care, some participants expressed the need to open up another hospital on-site in an effort to expand and make room for the growing number of inmate patients requiring extensive or long-term care. For example, Lynn ⁴ noted, “[t]hey get great medical care at this facility and they are seen way quicker than in the free world, but we want and need more beds.” Another nurse noted, “I think we will continue to evolve and hopefully open the other hospital that is not really being used. I would like to see expansion.”

Moreover, three medical staff suggested that lack of on-site access to a lab and pharmacy increased the difficulty of their jobs. For example, Amanda indicated that pain management and administering pain medication could be difficult at times. She stated,

Pain medication is a big deal. We don’t have a pharmacy on-site, so we have to stay on top of their meds, especially on the weekends…. Pain control is the most important thing here, but it can also be the most challenging.

Other physicians and nurses discussed similar issues such as the difficulty in pain management for those who have abused substances. One of the nurses in our sample discussed that “assistance with pain management” was a large factor in his job; however, one of the most challenging parts was “when the inmates pretend to have heart attacks or some ailment, it really just becomes wasted time.” This finding was not surprising considering previous research has documented the difficulty of pain control and management for those who have used substances (Handtke et al., 2016).

Four correctional staff attributed their stress to security procedures. They indicated the importance of maintaining security logs, implementing death procedures, confrontations with inmates, and medical emergencies. For example, Josh noted the importance of maintaining the security logs. He conveys, “[u]ltimately, we are responsible for the safety of the inmates, medical staff, and ourselves, so the security log is extremely important.” Other officers discussed the importance of security logs because it explained precisely how the day operated. These logs explicitly state the time when a medical professional enters and exits a patient’s room and what procedures are conducted. This becomes difficult when there are not enough officers or time to effectively document activities, especially when emergencies arise. Justin, a correctional officer, discussed how difficult it can be when “having two or three lists [security logs] and having emergencies at the same time, managing the chaos so to speak.”

In addition to maintaining proper documentation, the lack of training and communication between medical and correctional staff can sometimes lead to tensions when dealing with patients’ medical needs and security protocols. Three medical professionals discussed how security can sometimes “get in the way” of medical procedures, while three correctional officers suggested that medical doctors do not realize how dangerous these offenders can sometimes be even when terminally ill. For example, Sam suggested, “[e]ven though we are compassionate, we have to keep order. Sometimes these nurses don’t understand that these people are dangerous.” Conversely, Mary, a medical professional, noted how the health care staff’s main priority was patient care, which diverted from correctional staff’s primary concern of security and safety. Mary recalled when an ambulance had to be called for an inmate and the medical staff “were ready to go and it took correctional staff a long time” because they were focused on security procedures rather than the inmate’s well-being. It was interesting to note this was the main reason for tension among medical and correctional staff. Despite some tensions, most of the participants discussed the importance of working together. Amanda conveyed,

Their rules are their rules and we have to operate within those rules. It is important to have health information and security information, which can be hard to balance. There is a natural tension, but it doesn’t interfere and we meet in the middle and cooperation is there.

This quote from Amanda indicated how staff with different backgrounds and expertises focused on working together to help inmates who need intensive medical care, while maintaining an environment when the staff and inmates were safe. Overall, the medical staff worried about the lack of resources, such as not having enough beds and pain management, while the correctional staff were concerned with protocols, safety, and security. This was not surprising given the roles and responsibilities of the staff that worked directly in the EOL care unit. In addition to the stressors and challenges of role responsibilities, participants discussed how working with terminally ill inmates was personally challenging.

Emotional Stressors

Both medical and correctional staff agreed that it was emotionally stressful to maintain appropriate relationships with the inmates (n = 10), deal with patient manipulation (n = 9), and be surrounded by dying and death (n = 3). Half of the correctional staff (n = 4) and the majority of the medical staff (n = 6) found it emotionally stressful to maintain professional relationships with the inmates who are near the EOL. They noted the importance of having compassion and being respectful but still maintaining appropriate relationships by not divulging any personal information, getting attached, or providing more than what is medically needed for patients. For example, Lauren stated that keeping this balance was emotionally draining.

Everything is harder. You want to do things for the patients. Sometimes even simple things, but you just can’t. There are multiple hoops to jump through for even something as simple as an extra pillow or blanket. There has to be a medical necessity for everything. It’s hard to get used to.

They also noted the importance of only providing what was medically necessary for the patient, which can sometimes be complex and difficult. For example, Zack conveyed,

As a floor nurse, you obviously have to have compassion, but you also have to bring that into corrections differently. Here, the patients do not get what they want, they get what they need. I have to consider money and security, cost to benefit, and the benefit to the patient.

It was not uncommon for medical staff to struggle with decisions regarding what the inmate needs versus what the inmate wants, as well as what medical staff is allowed to provide. This is different from the free world as there are less regulations on providing simple items for patients such as pillows and blankets. This can create feelings of frustration and tension among medical staff in corrections who want to provide comfort and care to their patients who are terminally ill.

Both correctional (n = 4) and medical (n = 5) staff found that dealing with manipulation by inmate patients was also emotionally exhausting. They suggested that inmates sometimes pretended to need medical care or took advantage of nursing or correctional staff for extra privileges. Lynn stated,

…fine line you must walk with inmates…. When you cross that line, you get walked out [fired]. Take giving an inmate candy for example. When an inmate asks for candy, you give it to them. You give and inch and they take a mile. Now they think you are obligated to do something bigger.

Moreover, Mary expressed difficulty in, “wanting to do more when you can’t. Sometimes you want to do stuff for the good ones because not everyone is bad in corrections.” Mary’s comment suggested that she knows that incarcerated people may not be inherently bad people, but some may still try to be manipulative; therefore, following security protocols was imperative while showing inmates a level of compassion. Although it was difficult, the staff conveyed that maintaining a balance in care and learning to detect manipulation became less difficult overtime.

Three individuals found it difficult to constantly be surrounded by dying and death. One correctional officer explained the first experience he had with a dying inmate patient.

The first time I had an experience with death, I had to call the Chaplin. The look they give you is just something you don’t forget, like you just can’t help them. We had a long talk about life and death and I even talked to friends to get a better perspective where I could be at peace with it. Before here, I’ve never just watched someone die…. Now, after so many passes, I have to just take a moment to talk about it as it gets overwhelming. Some deaths are harder than others.

Despite the importance of maintaining acceptable relationships with inmates, several medical staff and correctional officers noted the difficulty of dealing with death, as well as coping mechanisms. To cope with death, eight individuals indicated that they have learned to “detach” over the years but still noted struggling with patient deaths. Some even equated their treatment of the patient to that of a family member. This was evident in Mary’s interview.

You take it home with you at first, so it was bad. You treat them almost like someone’s grandpa, so when they die it can stun you. You can get attached…. The longer I’ve been here, I’ve learned to detach. You can’t take things personally.

In Mary’s quote above, it was clear that she saw her inmate patients as someone’s grandfather, father, son, uncle, and family member. She humanized these individuals and provided care with empathy, but as she kept experiencing their deaths. She “detached” from them to perhaps desensitize from the struggles of losing someone in her care. Similarly, Michelle struggled emotionally from diagnosis to death with many of her inmate patients.

It’s sad to see these inmates grow old. In the free world, they go home after you see them. I see them all day. You essentially live with them for 8–10 hours a day…. We see the progression. We knew them before they were sick and when they were healthy.

Similar to the medical staff, the four correctional officers were more likely to attempt to compartmentalize and made efforts not to take the job home. Justine, a female correctional officer claimed, “I just shut it off. When I first came here, it was sad, but I try not to get connected to them. I get sad and then I move on.” Josh stated, “I don’t discuss what I do here at home with my wife, unless I leave with something really good. Typically, at 6:30 p.m., I don’t take it home with me and just leave it all here.” Robby stated, “I’ve seen people cry when you know what’s coming [inmate death]. I try to just keep it as a job. I don’t let it affect me.” The correctional staff viewed death and dying as a component of their position and knew they must learn to compartmentalize their professional and personal environments to be able to work in the EOL care unit.

Both correctional and medical staff felt the emotional stressors of working with EOL inmates. Employees posited that job responsibilities could be stressful because of the innate nature of caring for and watching individuals pass away regardless of whether they were in a correctional facility. It was only with time and detachment that staff learned to cope with these difficult aspects of their job. Further, both medical and correctional staff discussed the challenges of dealing with inmates who may be manipulating them. It was unfortunate to think about the possibility of inmates trying to take advantage of them while they were trying to perform their job duties and show them compassion and empathy. Staff, however, eventually learned to cope with the difficult parts of their job and how to maintain professional boundaries with inmates, which led them to overall job satisfaction.

Job Satisfaction

Overall, both the correctional staff and medical professionals expressed satisfaction working with not only sick inmates but also those who are near the EOL. All nine of the medical staff indicated that they are satisfied with their job and enjoyed their work. The doctors and nurses working in the EOL care unit overwhelmingly indicated job satisfaction for a variety of reasons, including it being different from the “free world,” not having to deal with issues with the patient’s family, being able to help those who do not have many options in prison, and some even referred to it as their “calling.” For example, Joe expressed:

I enjoy it. There is some stuff I don’t have to deal with in the free world, and a lot of these guys appreciate my help…. Overall, I’m happy here. I can impact people’s lives who don’t have a lot of options.

Similar to Joe, other medical staff were likely to suggest they were more satisfied with their correctional medicine careers, in comparison to those that have held careers in the “free world.” Cameron noted that she really enjoyed her job because, “I can focus on patient care and don’t have to worry about the family [of the patient].” Furthermore, Frank explained:

It’s totally different [treating individuals in the free world compared to prison]. Families on the outside constantly interfere with care and it can be really difficult in the free world because the family constantly hounds doctors and they end up doing tests that aren’t medically necessary. Here, you do what is necessary.

In prison, families are not involved in direct patient care; therefore, medical staff are able to provide focus on the appropriate and necessary needs of the inmate patients. While well-intentioned, participants explained how they felt inmates were receiving excellent health care because they did not have to worry about familial input. Also, while family and friends are able to visit inmate patients, medical and correctional staff discussed how many inmates on EOL care have minimal visitors because of the limited family connections they have due to them being incarcerated for so long. This furthers the importance of medical staff prioritizing inmate health care and acting in the best interest of their patient.

Three individuals also suggested that correctional medicine is not a profession that suits everyone. For example, Michelle equated correctional medicine to mission work. She explained, “I like taking care of patients, but taking care of inmates is a niche. It is almost like a third world country, like mission work but I enjoy correctional medicine.” Similarly, Lauren conveyed, “I like my job and I think I will continue to stay in corrections. It’s a job that is not for everyone, but I feel like I am a good fit here.” Respondents saw their professional work as a “higher calling.” They felt like they were helping a population that needed them and deserved compassionate care.

The correctional staff also had high job satisfaction, but for slightly different reasons than the medical staff. While all the correctional staff reported feeling satisfied with their jobs, six were likely to attribute their satisfaction to their coworkers and the inmate patients they met. For example, Marcus, a male correctional officer, said his favorite part of his job was, “all the people you meet on the job, both coworkers and the inmates.” Similarly, Sam noted enjoying working with the medical staff, correctional officers, and the inmate patients. When asked his favorite part of the job, he said, “I would say meeting inmates and coworkers…. I enjoy my job and look forward to coming to work. The medical staff listens to our opinions and considers our input. We’re a pretty tight-knit group.” We must note, however, that correctional officers who typically worked with the EOL care unit were “seasoned” officers who were older and had a number of years within the correctional field. In addition, correctional administrators indicated that it was a conscious decision to assign older, more “seasoned” correctional officers to supervise terminally ill inmates because they typically exhibited more care, compassion, and patience than younger, less experienced correctional officers. Despite being satisfied with their jobs, correctional and medical staff noted a number of challenges and emotional stressors that, at times, contributed to fluctuation of their job satisfaction.

Limitations

As in any study, a few limitations should be noted. We are cautious about external validity or the generalizability of the findings. Interviews were conducted with correctional staff and health care professionals at one correctional facility in one state. Perceptions and job satisfaction of those working in this correctional facility might not be generalizable to all those who work in hospice or EOL care facilities across the country. Furthermore, we utilized a nonprobability, purposive sampling technique which included all individuals who worked closely with EOL patients. Although random sampling would be preferable, we were more concerned with internal validity, especially given that we know very little about this population.

Second, while most interviews lasted approximately 1 hr, some interviews were shortened or suspended by interruptions or coverage concerns. It was common for the medical or the correctional staff to be short staffed at the time of the interviews; therefore, access to the participants during the interview became a concern. To minimize the interruptions, interviews were conducted during the hours where coverage was at its maximum. Third, due to the prison’s restrictions, interviews were not recorded; therefore, handwritten notes were used throughout the interviews. Although handwritten notes are not as reliable as recording (Jamshed, 2014), a number of steps were taken to enhance the reliability of the interviews. For example, two interviewers were present for all interviews. One researcher was in charge of conducting and leading the interview while taking basic notes, while the second interviewer focused on obtaining quotes. All interviews were transcribed following each interview.