On dying alone in prison and the social responsibility of medicine: a pilot interview study of physicians caring for terminally ill incarcerated patients in Austria and the United States

Introduction

Background

Health-care professionals’ values include making no distinctions among people’s lives, respecting every person’s dignity, and serving humanity. When students begin medical school, they often have to accept the World Medical Association’s Declaration of Geneva (1):

As a member of the medical profession:

I solemnly pledge to dedicate my life to the service of humanity;

The health and well-being of my patient will be my first consideration;

I will respect the autonomy and dignity of my patient;

I will maintain the utmost respect for human life;

I will not permit considerations of age, disease or disability, creed, ethnic origin, gender, nationality, political affiliation, race, sexual orientation, social standing, or any other factor to intervene between my duty and my patient.

One wonders whether the physicians who feel responsible to comply with the above consider different kinds of bodies, skin colors, and ideas of minorities. Still, this declaration is a high ambition and far from the reality of a vast number of patients.

The needs of incarcerated individuals are rarely addressed during medical training and practice. This may be a consequence of systemic racism and xenophobia or subconscious omission. Every year, Austria’s judiciary publishes the number of people in prison in the country. In 2023, the figure was around 9,000 (2). In the United States (US), the number is 1.9 million (3). More than half of Austria’s prison population does not have Austrian citizenship (4), while people of color are disproportionately more likely to be incarcerated in the US, particularly Black and Latino men (3,5).

These two countries have different carceral systems. In Austria, the prison population rate is 97 per 100,000 inhabitants; in the US, it is 531 (4,6). The global prison population is aging, and many older incarcerated individuals will die before they are released (7,8). Incarcerated patients receive little attention in a dense medical curriculum, and they are not equally included in the ordinary health-care system (5,7,9). In 2011, there were 69 prison hospice programs in the US (10), whereas no data exists on Austrian end-of-life (EOL) care in prisons. However, older adults in prison experience disability and illness at much higher rates than the general population (11). Access to palliative care in prison is limited, but in the US, few special housing units or entire facilities for older and frail incarcerated persons have been created, and other institutions have set up hospice units (11,12). One study found that 74% of older incarcerated persons reported distressing symptoms and 27% were afraid of dying in jail or prison rather than as a free person. The study suggested that an optimal medical model for this population would include a geriatrics-palliative care approach that includes the management of all forms of symptom distress, comprehensive treatment, and connections with the community (13).

Reading the words of hundreds of response letters that volunteers of the Mount Tamalpais College received after their project had provided thousands of incarcerated men with care packages during the coronavirus disease 2019 (COVID-19) pandemic in 2020 makes this omission very clear (14). The volunteers have created a website with a digital library for all the letters. One of these, Louis Anthony Crawford’s thank-you letter, raises awareness to the palliative care needs of incarcerated people. Crawford writes about his current life after 34 years of imprisonment, speaking about “the mental stress of bondage”. He describes “(t)he worries about family and friends” as a crucial part of “one’s deterioration both physically and mentally”. His struggle to hold his head high in this situation while facing multiple advanced diseases becomes apparent: “HIV, Hep C, uncontrollable high blood pressure, a tumor, and cancer.”

Crawford explains that his physicians have told him that he “may have only a year or less to live” due to colorectal carcinoma. He talks about his way of dealing with his bodily changes after an operation and chemotherapy inside San Quentin Prison, north of San Francisco. Crawford’s description of his symptoms and side effects are well known to palliative care specialists: skin irritation, damaged fingernails and toenails that fall off, dizziness, circulatory problems, peripheral numbness, and pain. These problems commonly occur due to chemotherapy or the disease’s progression. Still, little is known about the care providers’ perspectives and how physicians experience EOL care in carceral contexts.

Rationale and knowledge gap

In hospitals, a terminal illness is often the starting point of the encounter between patients and palliative care specialists. In this sense, Crawford’s locked world is accessible to us. However, the fact that he will never enter a palliative care ward, nor have access to the health-care system in the same way that non-incarcerated patients do, raises the question of what EOL care looks like in prisons. Crawford’s words make us wonder whether the Declaration of Geneva pledge that nothing will come between our duty and our patients is untrue. Today, millions of men and women find themselves behind bars without adequate access to care. Previous studies have found obstacles to providing palliative care in prisons, including mistrust, safety concerns, and conflicting priorities of care and custody (7,9). In this discussion, the voices of physicians who care for dying incarcerated patients are mostly absent.

Objective

This exploratory study aims to investigate the perspectives and experiences of physicians working with terminally ill patients in prisons in Austria and the US; it also seeks to determine key thematic areas for further research. By focusing on the physician’s experiences, this qualitative pilot study will generate insights into the palliative treatment needs of the carceral system. We present this article in accordance with the consolidated criteria for reporting qualitative research (COREQ) reporting checklist (15) (available at https://apm.amegroups.com/article/view/10.21037/apm-23-135/rc).

Methods

This investigation used semi-structured qualitative interviews. A number of predetermined open-ended questions (see Figure 1) were put to the participants, who were thus free to emphasize different aspects. Still the predetermined nature of the questions maintained coherence and ensured that important issues were not overlooked.

Figure 1 Interview protocol.

Participants and data collection

A.K. contacted three physicians (two females and one male) who were practicing medicine inside prisons. The interviewees were a palliative care professional already known to the authors and two doctors who were recommended by of a physician and a scholar working in the field. This resulted in the unusual distribution of one professional in New York State and two in Austria. The interviews took place in March and April 2021. Two were conducted via Zoom and one via telephone. They lasted between 34 and 72 minutes.

The interviews were audio-recorded and transcribed verbatim. The meeting with one Austrian physician was conducted in German, and the quotes presented here were translated by A.K. The results were analyzed using thematic analysis (16,17). Initially, a number of codes were generated, which were then grouped according to similarity and organized into themes. The interviews had an informal character, and the open-ended questions helped the participants focus on what seemed most important to them. The software program NVivo 10 was used to examine the data. After reading the interviews, A.K. and E.L.Z. each generated a list of codes independently of each other. When the results were compared, they showed a high degree of agreement. Differences were resolved through discussions with the other researchers (F.E., L.K., and F.A.). The themes were generated by grouping the codes according to similarity and organizing these categories into themes. The analysis and coding were started after the transcription of the first interview and continued throughout the analytical process.

Informed consent was obtained from all participants involved in the study. The ethical approval was exempted by the ethics committee of the Medical University of Vienna because the study was not classified as a clinical study and was planned and conducted in compliance with good scientific practice. The study was conducted in accordance with the Helsinki Declaration (as revised in 2013).

Results

Characteristics of the interviewees

One interview participant was in residency, while the other two had more than 10 years of working experience. The first interviewee was a family doctor working in correctional facilities for men and women in New York. The second was an internal medicine and palliative care physician working partly with incarcerated patients in the medical ward of a high security prison in Austria and partly in a special ward for incarcerated patients at a hospital. The third interviewee was a psychiatry resident at an Austrian prison that is at also a mental health institution treating men who have been found not guilty due to mental disorders. The quotes below are unattributed to safeguard the participants’ anonymity.

The thematic analysis revealed the following five themes: (I) a lack of training and support; (II) interrupted relationships; (III) limitations on visits and saying one’s goodbyes; (IV) security as a main concern; and (V) the possibility of release.

Lack of training and support

The interviews showed that those who care for terminally ill incarcerated people are left alone with the difficulties that doing so entails. The participants had not received specialized training for this task. With regard to patients dying in prison, the experiences of the three interviewees differed, but certain aspects were found to be common.

One doctor joked, “We often say that we are getting our medical specialization in prisonology all by ourselves.” For the Austrian physicians, working in a prison was obligatory and part of their training or contract with the hospital. Supervision was not provided. Instead, each doctor had to understand the problems on their own or discuss them with their teams. The team members, however, had very different attitudes. They included wardens who acted violently towards incarcerated people or played tricks on the doctors. Some nurses showed considerable compassion towards patients, while others punished them by not offering the prescribed pain medication, for example. One of the doctors described the following situation with wardens: “Sometimes they take off the incarcerated person’s handcuffs, but they are always present. And if the guard sometimes moves and wants to leave, I say, ‘Hey, if you leave, I will leave immediately!’ (…) You must always make sure that the guards (…) don’t play tricks on you. (…) So, you must be really strict with everybody in prison.” The same doctor had this to say about the nurses: “Some of them feel over-empathic. That’s only few of them. And others don’t care. They say, ‘I don’t care if he is in pain, because he did cruel things.’ And you as a physician have to counter that and say, ‘Yes, but I demand that you give him the pain medication.’”

Some of the colleagues the doctors met in prison were also mentioned as important role models and sources of support. Medical care in the carceral system is linked to the person’s ethics and ideas of guilt. The physicians were confronted with a difficult reality. They acknowledged the incarcerated persons’ unjust backgrounds, while at the same time witnessing the violence perpetuated in the community of incarcerated men, be it through attacks, fights, or sexual assaults. Some participants also spoke about the violence of the prison employees, which they attributed partly to low incomes and a lack of training and partly to the threats they had experienced throughout their careers.

Being a doctor who worked in a prison was sometimes seen as a failure by fellow physicians and even family members: “People think that it’s a bit weird that I work in a prison. There is often complete incomprehension as to how anyone can do it, and I have the feeling that they think I just didn’t find a job somewhere else. This work has a very low standing. There is no awareness that what we do is important.”

At times, the participants seemed disillusioned with their work, and it became clear that the carceral structures limited their practice. They had to find ways to protect themselves from physical harm but also from what they saw and learned within the prison’s walls. One interviewee said, “There is not a lot of space for dignity. (…) I always have to stop and block my thoughts. I must think that these patients are really heavy guys, because otherwise, I could not treat them and therefore, I block my thoughts about this and so I cannot think about dignity. It’s difficult; it’s really difficult.”

Caring for ill people in a system that is suspicious of the patient negatively influenced the patient-physician relationship. All three doctors spoke in a self-aware and self-critical manner. They saw the human instead of the criminal. During the interviews, they mostly spoke of “patients”; sometimes, however, they referred “inmates” and “prisoners”. The physicians had experienced being provoked, tested, and deceived in their relationships with incarcerated patients. One participant said, “Many of them cheat, they cheat on you. And I’ve learned that you can only believe every second word they say. This is also disappointing. Like, it’s hard to trust someone or to give more of yourself if you see that the other person is not reciprocating.” On the one hand, these difficult circumstances required personal strength, and the interviewees shared that other doctors had been broken by the demanding work and had stopped practicing in prison. On the other hand, the interviewees mentioned successful relationships with their patients and very simple interventions that they found helpful in establishing good rapport: greeting every patient, being friendly, staying interested in their lives, joking with them, and taking the time to listen. These interventions do not differ from those performed in patient-provider relationships outside prisons; still, they seem not to be self-evident in carceral settings.

Interrupted relationships

None of the interviewees had been present when an incarcerated individual died, but they reported a few cases they had been involved in. It was obvious that they lost contact with their patients. This could be due to the end of a shift, the transfer of the terminally ill person to a facility with more medical resources or a hospital, and early release. One physician explained that once the patient left the prison, one was not allowed to contact them and continue the established care relationship: “We are not allowed to contact the inmates once they leave for another institution. And it’s such a hard thing for me because some of them, I’ve made—I think—a strong connection with professionally. (…) There are very strict guidelines about not having contact. And so, on the one hand, I understand it. On the other hand, I’d say it’s really terrible. Because that’s like walking by somebody and not acknowledging them.” Furthermore, as another participant explained, when someone is dying in prison, there is no designated group of professionals in charge of this process: “I think there’s also clergymen and nuns, or other religious people, that are often very comforting as well. Counselors, who may or may not be good at this. Some of them are obviously better than others. But I don’t think that there’s a clear total number of people that are assigned to deal with people who are dying in prison.” Finally, according to the interviewees, there was a scarcity of medical equipment in prisons. Therefore, it was sometimes part of the physician’s duty to find a more suitable place for the patient to receive palliative care. This posed a problem in Austria, where hospitals were often unwilling to receive individuals from prisons, and beds were thus reported to be scarce.

Limitations on visits and saying one’s goodbyes

Involving and caring for the patient’s loved ones is central to palliative care. This seemed to be impossible in the prisons where the interviewees worked. As one physician explained, “Families are called and informed if a patient has to be transferred to a hospital, and their contact numbers are also given to future doctors.” The other two physicians were not expected to inform friends and family about the patient’s medical condition or approaching death for reasons that are unknown to the authors. Doing so is clearly a doctor’s duty in a hospital setting. Security remained an important issue also at the EOL stage. According to one physician, “there are usually people who are dying; if it’s something acute, they die in the hospital, and it’s very difficult for the family to get to visit. And we do have to make an intervention to give them special permission to even visit them in the hospital. Because there’s always the danger that they’re going to plan an escape. (…) There have been escapes made by people feigning illness, and you know, an escape attempt is not a pretty thing. That’s rare, thank goodness, then security is always number one. So that, in fact, is the cornerstone of everything that happens in a prison.”

The security-inspired architecture of a prison was reported to be unsuitable for EOL situations. Visits were only possible within visiting rooms, but if the incarcerated person was too frail or ill to reach those spaces, there were no alternatives: “If incarcerated patients can’t make it to the visiting room, they probably die alone.” In New York, this has led to other incarcerated people stepping up and comforting terminally ill patients. One interviewee explained the so-called “inmate aid”, a community of persons that were trained within a prison and allowed to care for each other at the end of their lives: “A woman who, in her mid-40s, was diagnosed with cancer, she had no family that would interact with her because of the crime that she had committed. So, she had no visit, she had no outside support system. So even though she really kept to herself quite a bit, she did develop a certain camaraderie with the other women on the long-term care unit, which is like a little hospital setting. And they, in fact, as often happens in a women’s facility, they embraced her and took care of her and became her family. They could go into the room and attend to her needs and speak with her, or just go in there and sit with her, so she wouldn’t be alone. They basically stayed with her throughout the dying process.”

In some cases, the physicians were able to grant permission for families to visit their loved ones in hospital. However, in other cases, the incarcerated person was admitted to hospital under an alias, so that their family could not find them. One of the doctors explained this situation thus: “Oftentimes, it’s impossible for the families or friends to say their goodbyes on the telephone. So, the family only gets to know the death after it occurred.” Sometimes, other actors (e.g., deacons) facilitated interactions with the outside world: “We have a wonderful chaplain, who is very, very responsible about staying in touch with the family and apprised of what’s going on. He visits the persons who are ill in the hospital. He talks to the families. He facilitates whatever kind of interaction there can be. And he is the one who notifies them if there’s a death.” Another physician added, “They have a special room for these visits in the prison, but not in the hospital. I think they can see somebody but it’s very, very rare. Very rare. They die, not alone, because there are always nurses and guards. Not with their family. No.”

Security as a main concern

Safety measures were always the primary concern for those working with incarcerated persons. For example, the doctors mentioned shackling someone who is dying to a hospital bed, not informing families out of fear of an escape attempt, and removing pens and name tags before entering the room of an incarcerated patient. One physician described her emotions thus: “I feel scared and uneasy when I enter the prison ward. We are asked to remove pencils from our coats and our name tags for security reasons, which feels awkward.”

These security precautions were justified based on specific prior experiences, which had led staff to become cautious and fearful. “You hear these kinds of stories. The guards tell you, you know, he’s paralyzed. But we had this story a couple of years ago, where a guy also was supposed to be paralyzed. And then he just took the opportunity to run away because everybody thought that he could not walk.” The uncontrolled anger and aggression of some patients led health-care providers to be watchful and wary. “You never know” seemed to be their conclusion. Trust was also hard to establish, which further led to the physicians maintaining their distance. One of them shared the following story: “A few days ago, (…) there was a bad fight in the yard. And in the yard, there’s like two officers. 400 guys. And you know, if somebody gets slashed, and you don’t know who got the weapon, there’s always that artificial need to maintain distance. So, it’s a slippery slope.” Another participant described the physician-patient encounter in prison more closely: “Specially equipped teams need to come to support you as a doctor sometimes, as patients freak out and destroy everything. You have to be cautious. And a lot of the prisoners are murderers or did something very severe—child abuse and things like that—so things have happened in the past and you have to stay alert.”

The high prevalence of psychopathic personality traits (e.g., manipulative behavior) and drug addiction among the incarcerated population, represents a further challenge to the doctor-patient relationship. In one instance, an imprisoned individual with a tumor had been given opioid-based pain medication, which was taken from them by other incarcerated persons who used it as a drug. This made effective symptom management difficult. “If you give them like an intravenous drip with morphine, it can happen that another patient takes it and puts it in his vein. Really, most of them are drug addicts. So that’s why you cannot have opioids available as usual.” This shows how individual events may have negative consequences on the whole prison population and might deny incarcerated persons sufficient medical support. Furthermore, one participant explained how the security measures implemented to protect incarcerated people limited their free will because they could not choose what happened to their bodies after death. In Austria, everyone who dies while incarcerated must undergo a court-mandated autopsy to rule out euthanasia or a violent death.

The possibility of release

The possibility of early release due to severe illness exists in both Austria and New York State. One physician shared the following successful story of early release: “I once had a patient and it turned out that on her routine chest X-ray when she came to the prison, which was a minimum-security prison, she happened to have a large lung mass that she didn’t know about as a young woman. I think she was in her 20s. And so, I immediately transferred her to a place where we had an infirmary. They were able, especially since she was a minimum-security prisoner, we got a compassionate release for her because she really probably, you know, had months to live.”

However, the participants mostly identified barriers to release. In the US, it is the physician who informs the incarcerated patient of this opportunity. In Austria, the carceral system initiates the process, and the doctor is asked to write a statement of approval and describes the patient’s condition. One of the interviewees shared her rule of thumb: “If they are still able to hold a gun, they shouldn’t go.” The physicians found themselves in a difficult position; they wanted the best for their patients, but they also feared negative consequences for the public. This responsibility was apparently hard to carry. The participants were afraid of being blamed for any possible violent outcome. One of them said that the dyadic relationship between the patient and the doctor becomes a triad in the carceral context, because one has to include society in the assessment of the patient. The interviewees said that predicting the future was impossible. “It is a prediction of human behavior, which is difficult. If the patient then commits another crime after being released, it leads to accusations against the assessing doctor. (…) The responsibility of the release is very much in the hands of the doctors, although it goes through a judge (…). They rarely disagree and mostly agree with the physician’s appraisal.” Another participant added the following: “Early release is really difficult sometimes because you think you’re responsible then that he gets out of prison even though he was maybe a murderer or whatever. And it can have consequences, also for other people.”

Sometimes the reaction of the public was dreaded. The interviewees reported that some incarcerated people had not been released due to political pressure or to avoid an outcry in the press. “Right-wing politicians create a mood against these people by calling them ‘murderers’ without understanding the case or their illness. They write threatening letters and turn to higher authorities. That’s why some individuals don’t get released. The media’s interest is too high.”

In addition, some terminally ill patients had nowhere to go. After years of imprisonment, their social contacts, financial means, and opportunities to find a place to live had diminished. As one of the Austrian physicians explained, “Some people have contacts outside, some don’t, especially those with a disposition that makes it more difficult to bond. In the past, people could be released directly into the family structure, but that’s no longer the case.” Furthermore, in Austria, terminally ill patients who were found not guilty due to mental disorders must be cared for by an institution after being released; however, apparently, there were too few institutions specializing in mental illnesses that could care for elderly or severely ill patients with multiple somatic diseases. “Doctors tend not to be strict at the end of life, but it is very difficult to find a place that can care for these people after they are released. Especially with the old people, we increasingly have the problem that they die in prison. We really need a specialized retirement home.” These factors repeatedly led to situations where people died in prisons even though they could have been released.

Some hospitals were reported not to be able to deal with incarcerated patients: “Sometimes we can transfer people and they die in hospital. Then we have people who are so complex and difficult that no setting can handle them. That means that they are very, very ill and they must go to a hospital, and we send them over. And then, the hospital calls us two hours later and says, ‘We can’t do this.’ And these are people who are really, really hard to care for—they refuse everything and will sabotage everything. (…) These are the people who come back, who die alone with us due to a lack of medical equipment and a lack of compliance, and mostly at night.”

The participants also mentioned that persons in prison received better medical care inside rather than outside and that being released might have negative consequences for them. One interviewee explained, “Many of the really sickest people who get released die very soon after they’re released—within weeks. We see it all the time. Because we take very good care of them. And they don’t add that support on the outside.” Another story that was shared was the following: “One woman was released, but she had no place to go. So, she ended up staying in prison.” The interviews show that early release is not an easy answer to terminal illness in carceral contexts.

Discussion

Key findings

The results of this study shed light on the difficulties of caring for terminally ill incarcerated patients. In the carceral system, health-care provider-patient relationships are usually interrupted. Incarcerated people have very limited options to be visited and saying goodbye to their loved ones, as security remains the main concern in prisons. The possibility of an early release is also rare. Finally, the findings show the struggle and the lack of support and training faced by physicians dealing with EOL issues in prison.

Strengths and limitations

The results of this pilot study raise additional questions. They do not address the complexity of hyper-incarceration in the US or the under-researched situation of prisons in Austria. The study used a small number of interviews, and the results cannot be generalized. We set out to conduct a pilot study to focus on important aspects of EOL care provision in carceral contexts. They provide novel insights based on the perspectives of physicians working with terminally ill incarcerated individuals.

Comparison with similar research

The fact that no incarcerated person with an oncological disease is registered in the US National Cancer Database, a registry that includes more than 70% of newly diagnosed cancer cases meant to allow for optimal care, shows that disparities in the quality of medical care exist for an entire population of patients. This fact denies these patients their right to live with dignity (18). According to DiTomas et al., in the US, the “obligation to provide care at the end of life that preserves human dignity in the correctional setting (…) has legal underpinnings” based on the Supreme Court’s ruling in Estelle v. Gamble. This ruling established that incarcerated patients have the right to a community standard of health care (8). It has already been stated that despite the prison population aging, incarcerated older adults face difficulties in accessing specialized geriatric care and that geriatric models of care need to be embedded in correctional facilities (19-21). Multiple researchers have raised concerns about geriatric and EOL health care within prison contexts (5,7,8,10,11,22). Specific issues, such as adequate pain medication and environmental and architectural barriers (e.g., visits), have also been described (7,16,23).

Previous studies have shown that the number of people dying in prisons has risen in the US over the past few decades and that the individuals concerned often have no knowledge of the possibility of applying for early release (24). The COVID-19 pandemic has prompted policy makers to develop decarceration strategies, which have mostly entailed reducing the inflow by limiting detention and incrementing outflow through early releases. However, despite increased eligibility due to COVID-19-related vulnerability, few individuals have been set free (22,25). This might also be linked to the uncertainty mentioned by our participants concerning who is eligible for early release. Health-care professionals sometimes are not aware that they can initiate an application for early release or feel ill-prepared and uncomfortable in offering a prognosis; also, procedural barriers to applying for compassionate release persist (12,25).

In prisons, few people have access to palliative care (10,12), and even if they do, the standards of care of correctional hospices usually do not meet those found on the outside. Actions that are central to palliative and hospice care, such as the involving relatives and friends, supporting the individual’s autonomy, and taking care of psycho-social needs, are severely restricted by incarceration (7,9,26). In this regard, Williams et al. share suggestions on how to address the geriatric public health consequences of mass incarceration; they emphasize the importance of health-care professionals’ advocacy of “a legal system that focuses on rehabilitation” and the need to create “expanded healthcare services” (5). Furthermore, Kanbergs et al. describe in a stepwise guide how health-care professionals can request compassionate release for incarcerated patients (25). A special focus is required for incarcerated persons with mental illness, who are less likely to be released due to a lack of suitable institutions on the outside, which makes post-release conditions inadequate (11,22).

Explanations of findings

The medical community needs to secure the best quality of care for everyone in our society. Access to EOL care is increasingly recognized as an international human right (27). Symptom management, psychological support, addressing social needs by including family and friends, and offering spiritual assistance are all crucial when a person is dying. This is hardly possible in a prison.

Implications and actions needed

Alternatives must be sought, such as nursing homes or hospices located outside the prison walls that are accessible to visitors. Our participants argued that it is crucial to provide sheltered places for people who have lived for decades in prisons, who might be elderly, frail, and unable to care for themselves on the outside. Providing support, opening the doors to visitors, and creating a connection with the community would be good initial steps. “There has to be a better way”, commented one of the interviewees, and this resonates as a conclusion regarding the current situation. Broader awareness in the medical community would be welcomed and could lead to more support for the physicians who are already working in carceral environments. Furthermore, the attention of society and the government will be needed to finance new facilities for people with limited life expectancy to be able to leave prison. For those who choose to stay or who cannot be released, there must be the possibility of being visited in the medical ward of the prison.

Different national legal contexts do not change the fact that patients die in prisons and that this issue needs attention, both in clinical practice and research. The multifaceted challenges of addressing mass incarceration, ensuring access to fair trials, prison remodeling, reforming relevant laws, training employees, and prioritizing reintegration require an evidence-based approach. Incarceration is a public health crisis for millions of people. It is a medical duty to guarantee equal care for everyone in our communities, and it is also the responsibility of policy makers.

Conclusions

In prison, people who are dying do not have access to the same quality of care as the rest of the population. Within the carceral system, a number of factors pose difficulties for EOL care, including a lack of training and support for physicians working in challenging conditions, the interruption of the doctor–patient relationship, limitations on visits and opportunities to say goodbye to loved ones, and the need to maintain security measures. The possibility of early release is also limited.

These obstacles should be communicated to the medical and palliative care communities in order to emphasize the need for further research. Which steps should be taken to enable palliative care in carceral settings despite limited resources? How can health-care providers working in prisons be supported? How can suitable post-release institutions be identified?

Louis Crawford, who has been incarcerated for 34 years, admitted that his prognosis of only 1 year left to live due to colorectal carcinoma had made him lay on his back for 27 days. Still, he got up and shared his achievements after the operation in his letter. He seems to have found a way through all of this by himself. “Sharing my story eases my troubled soul”, he wrote. His words highlight his agency and the resources he uses to alleviate his condition. His letter began with “To whom it may concern.” All of us should be concerned. The letter ends thus: “I fear it may be too late for me, (…) I write to you not for myself, but if I share my story it may save some poor soul from the trauma that I have endured” (4). This is a reminder that prison walls have come between our patients and our duty of care.

Acknowledgments

The authors wish to thank the interviewing partners for their time and frankness. The authors also thank Prof. Maura Spiegel from Division of Narrative Medicine, School of Professional Studies, Columbia University, NY and Prof. Nigel Hatton from Division of Narrative Medicine, School of Professional Studies, Columbia University, NY for helpful discussions.

Funding: None.

Footnote

Provenance and Peer Review: This article was commissioned by the editorial office, Annals of Palliative Medicine for the series “Narrative Medicine in Palliative Care”. The article has undergone external peer review.

Reporting Checklist: The authors have completed the COREQ reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-23-135/rc

Data Sharing Statement: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-135/dss

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-135/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-135/coif). The series “Narrative Medicine in Palliative Care” was commissioned by the editorial office without any funding or sponsorship. E.K.M. and A.K. served as the unpaid Guest Editor of the series. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. Informed consent was obtained from all participants involved in the study. The ethical approval was exempted by the ethics committee of the Medical University of Vienna because the study was not classified as a clinical study and was planned and conducted in compliance with good scientific practice. The study was conducted in accordance with the Helsinki Declaration (as revised in 2013).

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

References

1. WMA, Declaration of Geneva, October 2017. [accessed 01 February 2023]. Available online: https://www.wma.net/policies-post/wma-declaration-of-geneva/
2. BMJ, Bundesministerium für Österreichische Justiz (Austrian Federal Ministry of Justice), Insass*innenstand nach Staatsbürgerschaft, 1 March 2023. [accessed 25 June 2023]. Available online: https://www.justiz.gv.at/strafvollzug/statistik/insassinnen-bzw-insassenstand-nach-staatsbuergerschaft.2c94848542ec498101444595343b3e06.de.html
3. Sawyer W, Wagner P. Mass Incarceration: The Whole Pie 2023, 14 March 2023. [accessed 25 June 2023]. Available online: https://www.prisonpolicy.org/reports/pie2023.html
4. Institute for Crime & Justice Policy Research. World Prison Brief data: Austria, 2021. [accessed 12 July 2023]. Available online: https://www.prisonstudies.org/country/austria
5. Williams B, DiTomas M, Pachynski A. The growing geriatric prison population: A dire public health consequence of mass incarceration. J Am Geriatr Soc 2021;69:3407-9. [Crossref] [PubMed]
6. Institute for Crime & Justice Policy Research. World Prison Brief data: United States of America, 2021. [accessed 12 July 2023]. Available online: https://www.prisonstudies.org/country/united-states-america
7. McParland C, Johnston BM. Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014-2018. BMJ Open 2019;9:e033905. [Crossref] [PubMed]
8. DiTomas M, Bick J, Williams B. Shackled at the End of Life: We Can Do Better. Am J Bioeth 2019;19:61-3. [Crossref] [PubMed]
9. Maschi T, Marmo S, Han J. Palliative and end-of-life care in prisons: a content analysis of the literature. Int J Prison Health 2014;10:172-97. [Crossref] [PubMed]
10. Hoffman HC, Dickinson GE. Characteristics of prison hospice programs in the United States. Am J Hosp Palliat Care 2011;28:245-52. [Crossref] [PubMed]
11. Silber R, Shames A, Reid K. Aging Out: Using Compassionate Release to Address the Growth of Aging and Infirm Prison Populations. New York: Vera Institute of Justice; 2017
12. Williams BA, Sudore RL, Greifinger R, et al. Balancing punishment and compassion for seriously ill prisoners. Ann Intern Med 2011;155:122-6. [Crossref] [PubMed]
13. Bolano M, Ahalt C, Ritchie C, et al. Detained and Distressed: Persistent Distressing Symptoms in a Population of Older Jail Inmates. J Am Geriatr Soc 2016;64:2349-55. [Crossref] [PubMed]
14. Crawford, LA. To whom it may concern, Voices from Inside: Full Library, Mount Tamalpais College, 17 July 2020. [accessed 12 July 2023]. Available online: https://www.mttamcollege.org/voices-from-inside-full-library
15. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007;19:349-57. [Crossref] [PubMed]
16. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3:77-101. [Crossref]
17. Braun V, Clarke V. What can "thematic analysis" offer health and wellbeing researchers? Int J Qual Stud Health Well-being 2014;9:26152. [Crossref] [PubMed]
18. Oladeru OT, Perni S, Williams B. Improving care for the overlooked in oncology: incarcerated patients. Lancet Oncol 2019;20:1342-4. [Crossref] [PubMed]
19. Bedard R, Pelleg A. Aging Patients in Correctional Settings. Curr Geriatr Rep 2019;8:250-5. [Crossref]
20. Tann VJ. Prison Hospice Care: Life and Death Behind Bars. Am J Psychiatry Resid J 2018;13:3. [Crossref]
21. Stephens SL, Cassel JB, Noreika D, et al. Palliative Care for Inmates in the Hospital Setting. Am J Hosp Palliat Care 2019;36:321-5. [Crossref] [PubMed]
22. Tronick LN, Amendolara B, Morris NP, et al. Decarceration of older adults with mental illness in the USA - beyond the COVID-19 pandemic. Int J Prison Health 2022; Epub ahead of print. [Crossref] [PubMed]
23. Toews B. ‘It’s a dead place’: A qualitative exploration of violence survivors’ perceptions of justice architecture. Contemp Justice Rev 2018;21:208-22. [Crossref]
24. Kanbergs A, Ahalt C, Cenzer IS, et al. "No One Wants to Die Alone": Incarcerated Patients' Knowledge and Attitudes About Early Medical Release. J Pain Symptom Manage 2019;57:809-15. [Crossref] [PubMed]
25. Kanbergs A, Garcia-Grossman I, Ahalt C, et al. A stepwise guide for healthcare professionals requesting compassionate release for patients who are incarcerated. Int J Prison Health 2022; Epub ahead of print. [Crossref] [PubMed]
26. Linder JF, Meyers FJ. Palliative care for prison inmates: "don't let me die in prison". JAMA 2007;298:894-901. [Crossref] [PubMed]
27. World Health Organization, Integrating Palliative Care and Symptom Relief into Primary Health Care, 2018. [accessed 01 February 2023]. Available online: https://apps.who.int/iris/bitstream/handle/10665/274559/9789241514477-eng.pdf?ua=1