Palliative care for incarcerated adults

INTRODUCTION — The number of older adults (age 55 or older) within the criminal justice system is increasing and it is projected that by 2030 the number of incarcerated older adults in the United States will exceed 400,000 [1-4]. In 2013, 4446 individuals died while being held in local jails or prisons in the United States [5]. These numbers are expected to increase, as approximately 1 in 10 individuals incarcerated in state prisons is now serving a life sentence [6,7].

Persons who are incarcerated are held in correctional facilities, a term that includes both jails and prisons. Jails and prisons differ; jails house individuals serving short sentences or awaiting trial (generally for less than one to two years), while persons in prison have been convicted of a crime and are usually serving longer sentences.

While policies exist to enable some patients with serious life-limiting illness or severe medical disability to be released from correctional facilities to die in the community (“compassionate release”), these processes are logistically challenging and few individuals achieve release under these mechanisms. Thus, as the population of aging and/or seriously ill incarcerated patients continues to grow, so does the need for palliative care and hospice services [2]. Most incarcerated persons have similar end-of-life goals as those in the community; they want to have their symptoms controlled, to spend time with their friends and family, and to be able to find meaning in their lives [8].

This topic will describe some of the health concerns of incarcerated patients in the United States and approaches to the provision of palliative care, including barriers and strategies for overcoming these barriers. Although many principles discussed here may be relevant to other countries, we are not able to provide specific information or recommendations for incarcerated persons outside of the United States.

Other aspects of care for incarcerated persons are described separately. (See "Clinical care of incarcerated adults" and "Prenatal care: Incarcerated females".)

GERIATRIC AND PALLIATIVE CARE ISSUES IN INCARCERATED PERSONS — The rising number of older adults, coupled with “accelerated aging” [9] and increased morbidity and mortality of the patient population, has resulted in an increased need for palliative care and hospice services. Some issues specific to this population are described below.

Premature functional impairment — Incarcerated patients experience the burdens of chronic medical conditions and physical disability at rates that are higher and approximately 10 to 15 years earlier than individuals in the community [9,10]. This phenomenon of “accelerated aging” may be caused by multiple factors including increased stressors across the life course, lower socioeconomic status, lower literacy and education levels, increased exposure to trauma, mental illness, substance use, homelessness, and lack of access to health care in the community [11]. As a result, correctional health care systems generally consider patients to be geriatric or “older” in their 50s [12].

Incarcerated persons face unique challenges to functional independence. Some patients who might be independent in the community may have difficulty in prison due to the unique requirements or activities of daily living (ADLs) for prison, which include dropping to the floor for alarms, standing for head count, getting to the dining hall on time for meals, hearing orders, and climbing onto one’s assigned bunk [9,10]. Patients who require significant assistance with everyday ADLs are typically transferred from the “general population” housing units to a more supportive medical unit or infirmary.

The time allotted for incarcerated patients to complete their activities of daily living is often limited. If an individual is unable to awaken and dress in a timely manner, they may miss the “unlock” time, thereby forgoing the opportunity to exit their housing unit in order to access programs or medical appointments. Similarly, showers (often offered on a rotating schedule) may not be available when needed, thus leading to challenges for those struggling with incontinence or other concerns related to personal hygiene. The amount of time allotted for meals is generally limited to less than 20 minutes, even though many persons of advanced age or with physical impairments (including poor dentition) may need additional time to eat their full meal.

Without proper accommodations, patients of advanced age or with physical impairments may be at risk of rule-violation charges and potential disciplinary actions. For example, throughout the day, head count periods may necessitate standing for a period of time, and alarms may sound, which require all inmates to sit on the ground. Some individuals who are hard of hearing may have difficulty distinguishing these alarms, and those with mobility impairment may have challenges both getting down for the alarm and rising at its end. Some jurisdictions have developed policies to provide those with impairments an identifying vest. This allows correctional staff to easily identify those who have mobility impairments and require more time to get to the dining hall or to respond to alarms. Persons who are visually impaired can likewise be identified and redirected should they stray out of bounds, and those who are hard of hearing will not be mistakenly thought to be ignoring a direct order.

Incarcerated persons with disabilities are protected by the Americans with Disabilities Act (ADA) of 1990, which requires correctional facilities to provide accommodations to inmates with disabilities. Such patients are legally required to have equal access to all programs, facilities, and services, as well as accessible cells, adequate clear floor space, and grab bars for transferring to bed and toilet. Visually impaired individuals should be provided assistance with reading and writing as needed, and those who are hard of hearing provided access to either hearing aids or a sign language interpreter if that is their primary means of communication [13]. Correctional facilities vary in their ability to respond to ADA needs, and lawsuits for inadequate accommodation for patients with ADA needs are common in this setting. Medical caregivers should identify persons with disabilities and either provide assistive devices or facilitate transfer to a facility or unit that can meet their needs.

High burden of chronic illness — The majority of individuals who die in prison are over the age of 65, and chronic illness accounts for 90 percent of deaths [5]. The primary causes of mortality in United States jails are suicide and heart disease, while most deaths in prison are due to chronic illness such as end-stage liver disease, hepatocellular carcinoma, lung cancer, colon cancer, non-Hodgkin lymphoma, and cancers of the oral cavity and pharynx [5,14]. Other important chronic medical conditions likely to increase in prevalence include hepatitis C, diabetes, pulmonary disease, and dementia, as well as geriatric syndromes such as falls, incontinence, and functional impairment [11,15-17].

Mental illness, developmental disabilities, and cognitive impairment are also common. In 2005, over half of all incarcerated patients in the United States had mental illness [18]. Likewise, patients with cognitive and/or developmental disabilities are also disproportionately represented in the criminal justice system, with prison inmates being four times (and jail inmates 6.5 times) more likely to report a cognitive disability than the general population [19].

Substance use disorders are also disproportionately prevalent in the incarcerated patient population. Estimates suggest that over 50 percent of the population in correctional facilities may meet criteria for having a substance use disorder [20,21]. Ongoing substance use within correctional facilities also leads to the increased morbidity and mortality including an increased incidence of drug overdose, soft tissue infections, osteomyelitis, epidural abscesses, and endocarditis, as well as transmission of other chronic infectious diseases [22].

Health risks due to institutional limitations — Most prisons were designed with a young, healthy, able-bodied resident in mind, and few facilities take into consideration the needs of incarcerated persons who are of advanced age or living with serious illness. Some concerns include:

●Fall risk – The risk of falls may be heightened due to steep stairs or uneven terrain, the need to travel significant distances to the dining hall or yard, and suboptimal lighting [23]. Such challenges may result in older or frail individuals opting out of yard or recreation time or other programming opportunities due to fear of falling. A study conducted in California demonstrated that 51 percent of incarcerated women age 55 or older reported a fall within the last year [24].

●Air quality – Older facilities may have poor ventilation that can exacerbate chronic pulmonary conditions. In addition, while many prisons and jails have restricted indoor tobacco smoking, the practice often continues surreptitiously, and an individual confined to a specific living space may not be able to avoid secondary smoke inhalation, nor wish to notify custody due to fears of retaliation from those involved.

●Heating and cooling – Inadequate heating and cooling leads many facilities to become excessively hot or cold depending on the season. In the southwestern United States, for example, facilities are commonly located in the desert and excessive daytime temperatures may be inappropriate for some medications (eg, many antipsychotics), which can reduce the body’s ability to auto-regulate and puts residents at risk for heat stroke and, in some cases, death [2,25].

●Space confinement – Whether an individual is housed in a cell or a dormitory, their allotted space is limited. The average cell size is six by eight feet, and in many cases houses two individuals, which creates challenges in the storage and use of durable medical equipment such as walkers, wheelchairs, continuous positive airway pressure (CPAP) machines, and portable oxygen tanks. Individuals with mobility issues may not be able to properly use a walker inside of a cell or dorm given the limited space. Prison toilets are generally low to the floor and lack side rails, creating challenges for the frail. Beds are typically narrow cots and may include both upper and lower bunks making access to either bunk difficult. In addition, the mattresses (typically of low quality) may exacerbate chronic pain, leading to diminished sleep and associated complications including exacerbation of anxiety, depression, pain, and other symptoms. Such crowded conditions result in limited privacy, which can have a profound impact on the ability of a patient struggling with symptoms of nausea, vomiting, incontinence, or pain to maintain their dignity.

Potential for victimization — Many aspects of physical decline can place patients at risk of victimization. Dementia, delirium, medication side effects, and frailty can put patients at risk of bullying, manipulation, and theft. Access to controlled substances may make patients targets of others seeking to obtain these drugs. Patients with hygiene issues due to incontinence, flatulence, vomiting, colostomy bags, necrotic tumors, and other medical conditions can cause irritation and stress among those sharing their space, placing ill patients at risk of abuse or even assault.

Conditions such as progressive dementia can also put individuals at risk of unintended rule violations due to dementia-related disruptive behaviors. Such violations can potentially result in disciplinary action and even an increase in sentence length.

The National Commission on Correctional Health Care (NCCHC) has published an expected standard for palliative care in correctional health care settings and emphasizes that incarcerated persons should have every opportunity to die with dignity [26]. Given the many complex barriers to the effective provision of palliative care, it is imperative that custodial and medical administrators work together to develop policy and practices that allow for the provision of humane palliative and hospice care in the context of a secure environment.

Unique psychosocial concerns — Incarcerated persons may have unique psychosocial palliative care needs with regard to the challenges and concerns of grief, loss, finding meaning or purpose in their lives, and a desire for closure [27-29]. Some such concerns include:

●A sense of loss may predate their current medical condition, due to a loss of liberty, loss of family members who have died during their incarceration, and, in some cases, a loss of all family connections. Further separation may be an unintended consequence of transfer to a prison infirmary that can better meet their medical needs as their illness progresses.

●Incarceration itself often leads to a lack of control to achieve one’s goals at the end of life. For example, in our experience, many express an overwhelming fear of dying while incarcerated, fear of dying while shackled to a bed, fear of dying alone, and fear of not being able to say good-bye to loved ones. Others express regret at not being able to reconcile with loved ones or to express remorse and wish to show family or victims that “they have changed.” Finally, others who lack family or friends outside of prison express concerns about what will become of their remains without someone to claim them.

●Many incarcerated people have a history of trauma including exposure to adverse childhood experiences, threats or actual violence against themselves or their loved ones during their formative years, and trauma experienced as part of the legal system. It is imperative that those working with this population use a model of trauma-informed end-of-life care in order to avoid the potential retraumatization of issues brought up in the context of a serious life-limiting illness [30-32].

●Additional concerns stem from a lack of trust of the correctional health care system [33]. Due to a long history of inadequate medical care in the carceral system, concerns from both patients and families or other loved ones often arise as to whether or not an individual is receiving adequate care or if “everything is being done.” This may include anticipatory fear that they will experience inadequate pain and symptom control at the end of life. Many also express concern that their wishes about resuscitation and intubation may not be honored. For example, those who opt for life-sustaining treatment in serious illness in hopes that they will receive early release (often termed “compassionate release” or “medical parole”) or live to their parole date sometimes express concern that true efforts may not be made at resuscitation. Others fear that their wishes for comfort care only may not be honored, as prison administrators may wish to avoid deaths on prison grounds [34]. Some express concern that their spiritual beliefs and practices will not be honored as they die.

In one qualitative study, 21 incarcerated men with chronic medical conditions from four different prisons in one state were interviewed regarding their perspectives on dying in prison [35]. This study revealed "6 Themes" of concern, including the importance of seeking human interaction, accessing appropriate material resources, the wish to obtain compassionate care, receiving equitable care, addressing physiological needs, and facing death.

A subsequent study interviewed 20 incarcerated White men with a prognosis of less than 12 months as part of a larger advance care planning (ACP) assessment regarding end-of-life wishes and concerns [28]. Four overarching themes were identified that centered around loss, emotions evoked and fear of showing vulnerability, uncertainty about where they will die (with a hope for release), and the need to find purpose either through faith or helping others.

BARRIERS TO PALLIATIVE CARE — Palliative care is specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness [36]. The goal of providing medical, social, emotional, and practical support requires flexibility in the means by which these goals are achieved for a particular patient and their family. Several unique barriers to the provision of palliative care to incarcerated patients exist.

Institutional culture — Correctional systems are primarily designed to provide for the safety and security of society, staff, and residents of the institution. In order to achieve this goal, correctional facilities generally function with strict policies that minimize control among the incarcerated and have little room for flexibility. By contrast, palliative care focuses on giving back control to the dying patients and their families/other loved ones by providing needed support, communication, and symptom control. The inherent tension between these two cultures (correctional and palliative) is exacerbated by limits on access to health care and family participation, as well as challenges related to custodial regulations and conditions of confinement.

The institutional culture may make it difficult or impossible for incarcerated persons to access recreational or diversional therapy; support groups for addressing grief, loss, or terminal illness; spiritual resources (particularly for patients with a non-Christian belief system); and medical information due to restricted internet access and limited library resources [37].

Access to health care — Limitations on access to adequate health care in correctional facilities stem from broad philosophical questions about whether incarcerated patients “deserve” community standard care and logistical challenges of providing adequate palliative care resources at the facility level. Although in 1976, the United States Supreme Court decided in Estelle v. Gamble that incarcerated patients have a constitutional right to access health care by trained professionals [38,39], many facilities still struggle with providing adequate levels of care.

The reasons for inadequate health care in the correctional setting are multifactorial and may include overcrowding, underfunding, inadequate numbers of staff, inadequately trained staff, remote locations and a resulting lack of access to specialty services and off-site hospital services, and the inability of medical staff to provide standard care due to limitations imposed by custody staff. Some additional barriers include:

●In many states, incarcerated persons are expected to contribute a copayment for their medical appointments [40]. Although this payment is generally less than USD $20, this cost can be prohibitive, as the average state prisoner earns between $0.86 and $3.45 per day [41].

●Many incarcerated persons struggle with mental health issues and/or developmental disabilities, which decrease their ability to navigate the health care system, advocate for themselves, and/or follow complex treatment plans. This is particularly true for those with multiple chronic medical illnesses.

●The challenges inherent in utilizing transportation off prison grounds for specialty consultation or hospitalization can be prohibitive, especially for the medically complex. In most cases, such patients must travel with their hands securely cuffed and legs shackled, which puts them at risk for skin breakdown and injurious falls. Specialists and community hospitals may be located several hours from the prison, thereby requiring that patients sit for several hours in a wheelchair or on a hard bench in a cage in the back of a van. Moreover, it is common for incarcerated patients to feel demeaned by the experience of waiting for an appointment or being hospitalized in the community while wearing a uniform of “prison orange” and shackles. The feeling is also often accompanied by concerns that they will not receive compassionate or appropriate care because they are a prisoner. In most jurisdictions, patients who are hospitalized must remain shackled to the bed at all times, regardless of their condition or flight risk [42-44]. As a result, in our experience, some patients with significant medical needs will decline off-site transportation, thus resulting in a delay of diagnosis or treatment.

●Even if patients at a particular correctional facility have adequate access to health care, the medical staff working within correctional facilities may not have additional training in palliative or geriatric care. In particular, a lack of specialized training may pose a challenge to optimal advance care planning (ACP) and symptom management. In addition, lack of knowledge about prognostic methods may adversely impact the ability of medical professionals to identify those with a limited life expectancy who would benefit from palliative care services, including consideration for early “compassionate” release [45].

Lack of trust — The centerpiece of the clinician-patient relationship is trust. This is particularly true when discussing ACP and in the provision of palliative care. Forming a trusting relationship with a clinician in the correctional setting can be challenging due to the inherent power imbalance and the potential perception that a clinician working within the system has a primary loyalty to the prison rather than to the patient (“dual loyalty”) [46,47]. This mistrust may play a role in a patient’s willingness to sign an advance directive, forego treatments that no longer have a clear benefit, or share details of their illness that they fear may not be kept confidential [12,35,48,49]. The therapeutic relationship can be further strained by patient movement based on custodial considerations between housing units or correctional facilities. In most correctional facilities, institutional policy actively discourages the development of meaningful interactions between staff and patients (termed “overfamiliarity”). Such policies are meant to create clear boundaries and prevent staff from becoming involved in potentially compromising situations, but they can also impede the medical caregiver role, since meaningful human interactions are a core component of successful palliative care [50].

Limitations on family participation — Participation of families or other loved ones is a critical component of palliative care. In a correctional setting, such involvement is inherently limited due to custodial restrictions on communication and visitation. Phone calls are limited and in some jurisdictions can be very costly [51,52]. For families or other loved ones, the ability to engage in frequent visitation is often limited by both the expense of travel and responsibilities at home [53-55]. If they are able to visit, the physical plan of the visiting room may not be optimal for an individual with palliative care needs, such as limiting access to needed continuous intravenous medications. While families or other loved ones can sometimes gain permission to enter a prison-based hospital unit, visits are often shortened since the visit results in limitations on the movement of other patients on the unit.

For many older adults, family contact has been lost due to many years of incarceration, family deaths, family moves, and/or movement to a correctional facility that is far from home [56]. At times, family contact is disrupted prior to incarceration as a result of factors such as mental illness, substance use disorder, and homelessness. Some patients do not wish to make contact with family members for fear of causing additional suffering to those who have already borne the burden of an incarcerated spouse, parent, or child. Finally, some families opt not to communicate with their incarcerated family member or are unable to participate in ACP or the achievement of a patient’s goals at the end of life due to personal challenges with illness, old age, caregiving, work responsibilities, mental illness, or substance use disorders. In cases where a family member is incarcerated elsewhere, policy may explicitly forbid direct communication between two persons who are incarcerated.

These limitations on family or other loved ones participation create challenges to the provision of optimal care for patients with life-limiting illness on a variety of levels. When possible, positive aspects of family involvement can include: financial support to those struggling with chronic illness; provision of a “reason for being,” relief of loneliness, and (in many cases) the possibility of forgiveness and closure at the end of life.

Family members or other loved ones can also play an important role in ACP, an essential part of high-quality palliative care. As in the community, lack of family/loved one involvement in ACP discussions can lead to challenging situations in the future, should they become involved later in the course of the disease and believe that the patient should be receiving an alternative treatment plan. In a correctional setting, these challenges can be even more pronounced given the inherent lack of trust in the system. (See 'Facilitation of advance care planning' below.)

STRATEGIES TO IMPROVE PALLIATIVE CARE FOR INCARCERATED PERSONS — Much of the literature related to palliative care for incarcerated persons is descriptive and focused on the experiences of United States prison hospice programs [57]. The following suggested strategies are based on qualitative studies, small quantitative studies, national guidelines, and personal experience.

Symptom management

General considerations — Incarcerated persons with serious or life-threatening illness should receive similar symptom management to patients in the community [34]. The most common symptoms include pain, depression, anxiety, confusion, fatigue, breathlessness, insomnia, nausea, constipation, diarrhea, and anorexia [58]. (See "Approach to symptom assessment in palliative care" and "Overview of managing common non-pain symptoms in palliative care".)

Given the growing need for palliative care in the correctional setting and the lack of specialists working inside prisons and jails, we suggest that primary care providers for incarcerated persons receive additional training in symptom assessment and management in order to meet community standard care.

Besides physical symptoms, incarcerated older adults have been shown to suffer from psychological, social, or existential symptoms (eg, depression, anxiety, loneliness, and fear of dying in prison) [59]. Access to nonpharmacologic means of symptom control is often limited in a correctional setting. The clinician should play an active role in referrals to dietary consultants, recreational therapy, peer caregiver programs, mental health, or spiritual advisors when available, since it has been found in the community that development of effective coping strategies can reduce anxiety and the perceived intensity of symptoms, particularly pain and shortness of breath.

Access to medication — Special considerations in this population include the potential for limited access to needed medications. Incarcerated persons are not permitted to “keep on person” any controlled substances, thus those who are not in an infirmary or hospice setting are required to wait in “pill lines,” a tiring experience for patients with serious illness or of advanced age. Medications are generally distributed at most two to three times per day at specific times, thus limiting access to “as-needed” medications. When fixed medication pass schedules cannot meet a patient’s needs, admission to a medical unit may be necessary, but such admission can result in unintended consequences such as removal from an emotionally supportive environment, loss of meaningful work or programs, or limitations in access to outdoor time, religious services, library, and visiting.

Helpful strategies include:

●Providers should be aware of these limitations and regularly assess a patient’s ability to stand in line and whether the frequency of distribution is sufficient to meet their needs.

●In cases where symptoms are inadequately controlled, a referral to a more supportive medical unit may be required so that medication distribution can occur on an as-needed basis.

●If medications on the drug formulary are ineffective at controlling symptoms, approval for off-formulary medications should be sought.

●Formularies should be sufficiently broad to allow for more than one treatment option for common symptoms. Distressing symptoms such as pain and nausea are more likely to be adequately addressed if a clinician has a variety of options readily available.

Pain management — Evaluations of pain should be similar to that in the community and include a comprehensive pain assessment, a review for a history of substance use disorder, and a careful weighing of the risks and benefits of treatment with the patient. Patients should be frequently reassessed for medication side effects, misuse, or poor pain control.

Pain management can be particularly challenging in a correctional setting where a high percentage of patients have a history of substance use disorders and the risks of diversion and abuse are high. As in the community, prescription opioids account for a significant portion of drug overdoses and are often the result of drug diversion. On the other hand, studies have shown that doctors generally underestimate the severity of pain, even in cancer patients, and that this phenomenon is even more pronounced in patients from underrepresented racial or ethnic groups and older adults [60-62]. Patients may also underreport symptoms in an effort not to appear weak or disabled [58]. Rates of severe pain in a jail population have been reported as comparable to rates in the community and are not associated with either substance use disorders or drug/alcohol-related arrests [63]. Practical tips include:

●Providers must balance their concerns for abuse and diversion with the need for symptom management in this population and take care not to assume that all reports of pain are exaggerated or “drug-seeking behavior.”

●Providers should be alert for the possibility that older or frail patients may be intimidated into diverting medications for others. Policies that require directly observed therapy should be enforced not only to prevent diversion but also to reduce the potential for such victimization.

●Pain contracts or agreements should be completed with all patients receiving opioids or other controlled substances to ensure both patient and provider have a clear understanding of the goals and expectations of treatment. (See "Cancer pain management: General principles and risk management for patients receiving opioids", section on 'Risk assessment and management for patients receiving opioids'.)

●Medical and correctional staff should work together to ensure the proper storage, dispensing, and monitoring of controlled substances, as repeated incidents of drug diversion from a palliative care setting could put the longevity of such a program in jeopardy.

●Patients who suffer from symptoms of confusion or agitation should be treated per standard guidelines, but clinical staff should take care to ensure that correctional staff are aware that their aberrant behavior is caused by their underlying medical illness so that inappropriate disciplinary action is not taken.

Improving provider/patient relationships — The provision of palliative and hospice care requires clinicians to develop a relationship with their patients. However, custodial regulations in the United States place limitations between staff-inmate relationships in order to maintain security by creating boundaries between custody staff and those they have been tasked with imprisoning. Of note, many European countries practice a form of security (dynamic security) that encourages the development of collegial relationships between staff and those in custody that promote mentorship, social support, and rehabilitation [49,64].

In order to achieve the goal of providing a community standard of care for incarcerated patients, the challenges related to dual loyalty and custodial-driven regulations that prohibit the development of relationships between staff and those who are imprisoned (ie, overfamiliarity) need to be addressed. In the case of dual loyalty, ethical standards in the United States and international law agree that a clinician’s first loyalty is to their patient. In the setting of palliative care, it is not unusual for a patient’s medical needs and the conditions of confinement to conflict, such as when the facility disallows the use of opioids for all patients. While a clinician may not be expected to subvert the regulations of their system, they do have an ethical duty to the patient to advocate for a compromise that supports the achievement of community standard palliative care, including the ability to achieve (to the greatest extent possible) a patient’s end-of-life goals and death with dignity [46,65,66].

Ideally, patients will trust that their health care provider is presenting them with accurate information regarding their treatment options and has their best interests in mind. This trust can be enhanced through empathic listening and asking questions about life prior to incarceration (including work, recreation) and important relationships, without compromising the safety and security of the institution.

Medical administrators can support the development of appropriate clinician-patient relationships by creating a culture of compassion and ensuring that individual providers feel supported in working within the system towards a goal of allowing their patients to die with dignity. Trainings for medical and custodial staff that allow for a recognition of the challenges faced by seriously ill and aging persons under custodial control can lead to increased empathy and improved care. Dual loyalty trainings can raise awareness of this potential conflict and provide support to clinicians in ensuring that they are empowered to advocate appropriate medical care and support for their patient [67].

Increasing access to palliative care specialists — Increasing the provision of palliative care involves improving the transfer of patients to off-site specialists and increasing on-site care.

On-site care — The provision of on-site care can be improved with the development of specialized geriatric or palliative care/hospice units. The benefits of specialized units are that staff can acquire enhanced training in the care of patients with serious life-limiting illness, and additional services such as nutrition, recreation, special visiting policies, peer worker programs, and spiritual support can be provided in a more centralized manner. In addition, focused specialized units can reduce victimization of frail individuals that may occur in a prison’s general population unit. However, patients may lose important social connections when moved to such units. In an ideal setting, those in the general population, with appropriate custodial clearances, would be able to participate in visiting programs with those transferred to specialized visiting units if within the same facility.

Facilities can also improve palliative care services by supporting the training of existing providers. Since most medical staff who practice in the correctional setting lack specialized training in geriatrics or palliative medicine, additional training in these areas can be accomplished with webinars, meetings, focused courses for continuing medical education, relationships with local volunteers from hospice and palliative medicine organizations, or medical training facilities. Training should address how to prognosticate, assess and manage geriatric syndromes (eg, fall risk, incontinence, dementia, sensory impairment, delirium, syncope, and frailty), how to engage in functional assessments, and how to manage severe symptoms that are commonly encountered in serious life-limiting illness. Several state prison systems have successfully partnered with outside hospice or academic organizations, to provide consultation services and training to staff. In addition, video consultation can be used to allow for provision of palliative care.

Off-site care — When patients require transportation to the community for specialty consultation or off-site hospitalization, medical staff at the prison or jail should be contacted immediately if the patient declines to be transported off-site. This allows for an opportunity for the health care professional to ensure understanding of the rationale for the specialty referral as well as the risks of declining the care. In addition, the provider can address any associated fears that may be driving their decision or develop an alternative plan to manage symptoms within the facility.

Some practical issues related to off-site care include:

●Frail patients may feel unsafe and be at risk of falls and serious injury when walking with shackles. Providing a wheelchair for transportation to off-site appointments may allay these concerns and allow the consultation to proceed.

●Orthopedic injuries and conditions that increase skin fragility can make handcuffing painful or harmful. Medical staff can work with custody to encourage alternatives such as waist chains or padding to protect fragile skin [68].

●Concerns about incontinence during transportation may be alleviated by providing incontinence briefs or changes in the time of diuretic dosing.

●Concerns regarding the development of hyper- or hypoglycemia during long transports can be addressed with adjustments to insulin dosing or timing.

●Morning medications can be provided prior to departure to avoid missed doses and unnecessary symptoms.

●Some patients may be too debilitated to sit upright in a van for the duration of a transport and may need to be taken by ambulance.

●Conflicting priorities may be behind declinations of needed medical care. Patients are generally not told about off-site appointments until the day of the appointment for security reasons. Previously scheduled legal visits or family visits may be more important to the patient’s end-of-life goals. In these cases, patients are often willing to access care if the appointment can be rescheduled to avoid such conflicts.

●Medical administrators should explore options for telemedicine consultation with their contracted specialists. In many cases, a telemedicine consultation is medically appropriate and can avoid the difficulties associated with off-site transportation in a frail patient population as well as reduce the stigma many feel when brought to community medical facilities as a prisoner.

●In most jurisdictions, incarcerated persons are prohibited by law from inclusion in clinical trials. This is due to laws enacted to protect individuals under custodial control from unethical experimentation.

Facilitation of advance care planning — Advance care planning (ACP) is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care [69]. The details of ACP are addressed elsewhere (see "Advance care planning and advance directives"). The recommended ACP standards in the community should be used when addressing these topics with patients who are incarcerated. However, there are a number of special considerations that must be addressed in this population:

●Given that most incarcerated patients are unable to select their primary care provider, it is important that all providers are skilled in how to engage patients in ACP discussions.

●ACP conversations should be held in confidential spaces that provide both visual and auditory medical confidentiality from other patients and correctional staff. Unless clear safety issues exist for a medical staff member, officers should not be present for these conversations.

●Given the potential for mistrust of medical staff in the correctional setting, medical professionals must take time to ensure patients have a clear understanding of the goal of ACP, as well as their diagnosis and treatment options. It can be useful for the health care professional to clearly state that these decisions are the patient’s to make and that medical staff will support whichever decision is made. This is particularly relevant since incarcerated patients rarely have the freedom to engage in even minor decision-making, such as what to eat for a meal, and thus may not easily trust that their values will be considered.

●Engaging surrogate decision-makers in ACP discussions can be challenging in the jail or prison setting. Teleconferencing can sometimes minimize this barrier. If patients are not able to convey the details of their medical illness, treatment plans, prognosis, and/or goals of care to their family members or surrogates due to limitations from mental illness, developmental disabilities, and/or cognitive decline, it may be useful for medical staff to contact a patient’s family member to provide information and answer questions. This should only be done after gaining permission from the patient (generally using a signed release of medical information form). When communicating with families or other loved ones, institutional policy must be followed and may include safety considerations such as avoiding the use of personal phone lines, not providing times or locations of off-site specialty appointments or hospitalizations, and deferring questions about custodial concerns to the proper authority to avoid creating false expectations.

●Medical staff should obtain the name and contact information for potential surrogate health care decision-makers early in the patient’s illness and continue to ensure that it is current, in case of an unexpected change in the patient’s ability to communicate.

●The ethics of palliative care do not change when an individual is incarcerated (see "Ethical issues in palliative care"). As in the community, the principle of autonomy holds true with respect to medical decision-making. Incarcerated persons have a right to accept or reject recommendations made by their health care team. The circumstance of being incarcerated may lead a patient with clear decision-making capacity to a conclusion that goes against the values of their clinical team. For example, a patient who is incarcerated with a life sentence may choose to decline potentially life-saving treatments, citing their long sentence as a rationale, or an individual who meets hospice entrance criteria may wish to receive treatment designed primarily towards the goal of curing disease in hopes of surviving to a parole date or obtaining early medical (“compassionate”) release. As in the community, a patient does not have the right to demand interventions that are not medically indicated. Individual states have varying policies on how an incarcerated person can obtain a second opinion, but a second opinion generally results in the patient bearing the full weight of the cost of the consultation. Most jurisdictions do not allow incarcerated persons to be involved in experimental treatment protocols, even when they are the only potentially life-saving modalities available. Finally, in accordance with the community standard, an advance directive can be revoked either verbally or in writing at any time by a patient who has decision-making capacity.

●Incarcerated persons who lack decision-making capacity and who have not previously named a surrogate decision-maker in an advance directive may require a surrogate decision-maker be identified. As in the community, family members should be sought for input, and in some cases it may be necessary to petition the court to appoint a surrogate. Despite an individual’s custodial status, correctional officials do not have the authority to make these decisions. The use of institutional ethics committees can be useful to guide practitioners in such cases. (See "Legal aspects in palliative and end-of-life care in the United States", section on 'Surrogate decision makers' and "Advance care planning and advance directives", section on 'Surrogate decision-makers'.)

Achieving goals at the end of life — Palliative care should address personal and value-based goals, which are important towards the end of life (see "Discussing goals of care"). Persons with life-threatening illness often hope to complete tasks, mend relationships, find atonement, increase connectedness, and build legacy [70]. These same goals have been reported in studies of incarcerated patients, with common themes of the need for forgiveness and making amends [22,28,71] (see 'Unique psychosocial concerns' above). Meeting these goals can be particularly challenging in a correctional setting, as access to family and the resources needed to attain these goals are restricted. Even so, institutional social workers and chaplains can be valuable resources for assisting patients in both defining and achieving these goals. Value-based interviews and planning tools such as the Go Wish card game can help direct conversations about end-of-life goals [72,73].

Legacy-building activities also may help incarcerated persons with serious life-limiting illness or of advanced age to reflect on their life in a manner that allows them to see the sum of their existence as more than just the crimes that they have committed. Many incarcerated patients share a fear that they will be remembered only for what they have done against society and not for the positive contributions they have made in their lives [74]. Activities that focus on discussion of positive memories from the past, elaborating on a particularly positive time period in one’s life (perhaps in the form of a written project or piece of art, and then sharing the project with family members and friends) can be very therapeutic [75].

Access to activities that may assist patients in achieving their goals towards the end of life may need to be negotiated and coordinated with custody to allow for flexibility in timing and location as well as accommodation of medication needs, fatigue, and medical equipment [76]. Access to the outdoors, exercise, art, music, games, puzzles, light duty work or volunteer activities, grief groups, social interaction, and other types of diversional therapy are essential during this time.

In a series of interviews with incarcerated persons nearing the end of their lives, a common theme emerged: the desire to do something positive for others and to “give back” before they died [28]. Examples of such activities include sketching pictures of other patients to share with family, holding spiritual study groups, providing emotional support or engaging in conversation with others, playing music for others, and assisting the less firm with puzzles or games. These activities reduce the amount of time a patient is focused on their serious illness and disease process, difficult social situation, or symptoms and can give an opportunity for others to find meaning or give back to their community in a positive way.

Interviews with incarcerated patients with serious, life-limiting illness or of advanced age reveal that it is common to be concerned about what will become of one’s remains. While patients with family may have a plan for their remains, proper disposal and/or burial can be costly and unavailable to those who lack outside social connections. The policies regarding the disposition of unclaimed remains vary by state, but many institutions have contracts with funeral homes. It is important that medical staff and chaplains be aware of the process in their jurisdiction so that they can share this knowledge with patients, families or other decision-makers, and health care providers. Interviews with incarcerated persons with terminal illnesses show a common theme of a strong desire to die outside of prison walls [34,35]. In one state, those prisoners whose bodies are unclaimed are cremated and then scattered in the ocean. This knowledge is frequently reassuring for patients and family members, as it implies a sense of freedom for their final “resting place.”

Compassionate release — “Compassionate release” is a term that generally refers to statutory processes allowing incarcerated persons to be released or paroled from a correctional facility due to profound health care needs or advanced age. Other terms for this practice include medical release, medical parole, elder parole, and humanitarian release. Policies vary by jurisdiction (eg, local jails, state prisons, federal prisons). In general, the processes include demonstration of “particularly extraordinary or compelling circumstances which could not reasonably have been foreseen by the court at the time of sentencing” [77]. Most patient qualifications include “medical incapacitation” (defined as being so physically or cognitively impaired as to be unable to pose a danger to society) and/or having a life-limiting prognosis determined by a treating clinician (usually less than 6 to 12 months, although these timeframes vary by state from less than 60 days to 18 months).

The rationale for compassionate release policies encompasses moral and humanitarian considerations as wells as financial and practical considerations. Compassionate release can help to allay the increase in health care costs due to aging of the incarcerated population [78,79]. In addition, the Department of Justice estimated that recidivism rates for those granted compassionate release are approximately 3.5 percent, whereas the rate for the general federal prison population is 41 percent [79,80].

Correctional health care professionals play a key role in compassionate release, as most states require written certification by a clinician in order to initiate the process. Most processes require the approval of local medical administrators, wardens, statewide administrators, parole boards, courts, and in some cases state governors and/or crime victims. Criteria often focused on prognosis for death may not be consistent with the clinical progression of disease or take functional or cognitive decline into account [81,82]. It is common for patients to die before completing the cumbersome bureaucratic review process. During a one-year period from August 2013 to September 2014, 2621 requests for compassionate release were made within the federal system, with only 85 resulting in release [83].

Although success is uncommon, a review of the compassionate release on a state-by-state basis revealed several best practices. These include having medical teams take a proactive role in identifying individuals eligible for compassionate release and submitting the requests on the patient’s behalf, involving families/loved ones and supportive release planning [84].

Practical tips include:

●Clinicians should be knowledgeable about the requirements for compassionate release in their jurisdiction. The Families Against Mandatory Minimums group provides a summary of compassionate release programs by state.

●Some incarcerated patients will not wish to apply for release either because they do not wish to be a burden to family members on the outside, they are comfortable with the support they are receiving in their current setting, or because they have been incarcerated for so long that they consider those that they know in prison to be their family. The decision to apply for compassionate release should be that of the patient.

●Multiple studies show that clinicians frequently overestimate longevity, and for incarcerated patients this unfounded optimism can result in insufficient time to make it through the cumbersome compassionate release review process [85]. Clinicians should be reminded that a prognosis of less than six months does not mean they must guarantee that death will occur within six months, but rather that they can estimate there is a more than a 50 percent chance of death within six months.

●Most jurisdictions require clinical staff to provide a written description of the patient’s health status for approval by non-medical entities such as parole boards, courts, custodial administrators, or elected officials. Often this documentation is the only information describing the patient’s current health available to those deciding to approve or deny a request. This description should be written in language easily understandable by non-medical decision-makers and include the patient’s age, serious or debilitating diagnosis, comorbid conditions, prognosis, their degree of cognitive and functional impairment, and their nursing and custodial care needs (form 1).

●Any plans for post-release housing or family support should be noted, as those with release plans tend to be viewed more favorably and some jurisdictions will not allow for release without a clear plan for housing and support upon release (form 1). Various community organizations including veteran or religious groups and county facilities may be willing to accept those receiving compassionate release, and these relationships should be developed by correctional medical staff caring for older and/or seriously ill patient populations [47]. In addition, most patients who are nearing the end of life will qualify for Medicaid services upon release allowing for in-home support services.

●Changes in health status should trigger reevaluation and an update to the court as a patient’s clinical condition deteriorates.

●Should a patient receive compassionate release, a strong transition-of-care plan is essential. Preparation for release should include arranging insurance coverage via Medicaid applications, seeking veteran benefits if appropriate, or working with families or other decision-makers to initiate other insurance options. Social workers, case managers, re-entry planners, or others involved in release planning should assist in arranging for in-home support services or facility placement. Medical staff should complete clear discharge summaries; provide an adequate supply of medications, medical supplies, and any essential durable medical equipment; and conduct a transfer of care call with the accepting primary care provider or hospice program.

Use of peer caregivers — There is a growing practice of using other incarcerated people as caregivers (either paid or volunteer) as part of the palliative care team in prisons [86]. Supervision is generally provided by a chaplain, social worker, nursing staff, or custody officer. Assignments range from pushing those in wheelchairs or guiding those who are visually impaired, to full integration into a hospice interdisciplinary team and intense 1:1 patient care supported by staff.

Peer caregiver duties can include assisting in reading or letter writing; cell cleaning; accessing resources; companionship; recreational support (eg, games, puzzles, or exercise); acting as a liaison between patients and staff; redirecting patients with cognitive impairment, and supporting staff in patient care in an infirmary, dementia care unit, or inpatient hospice settings. Peer caregivers should not perform medical duties such as medicating, dressing changes, or obtaining vital signs.

Potential peer caregivers must meet eligibility criteria, which include having had no disciplinary action over a given time period, having no history of a substance use disorder, having shown a commitment to rehabilitative or community service while incarcerated, having stable mental health, having a sentence of sufficient duration to ensure continuity and a long-term benefit to the program, and having no convictions for sexual or other dependent abuse [87,88].

Results from qualitative studies reveal that this practice provides unique and necessary patient care support with benefits for patients, the caregivers themselves, and medical staff [86,89-91]. For example, one study based on 22 semi-structured interviews with peer caregivers at a New York State correctional facility found that they were uniquely able to connect with, understand, and communicate the needs of dying patients in the prison. For caregivers, benefits included a sense of “giving back” and rehabilitation [89]. Many consider their work in helping others to be a transformative experience building empathy, self-esteem, and caregiver skills, all of which could be carried back to the community upon parole.

Deep bonds frequently develop between a dying patient and their volunteer/worker caregivers, allowing for an authentic surrogate family experience [87,88]. Due to the intensity of the relationships developed and the inherent frequency of loss, bereavement services should be provided to peer caregivers. This can be done in the form of regular grief processing groups with supervisors and peers or memorial services for those who have passed.

In addition, health care staff benefit from the additional support provided by caregiver programs, resulting in a reduction in workload, stress, and burnout [92]. In many cases, peer caregivers are integrated into the health care team and their positive energy and dedication can serve as a motivating force to all staff. Nurses working in hospice settings with peer caregivers have been found to be almost universally supportive of the practice, despite the added responsibility of supervising the care [88].

The National Commission on Correctional Health Care (NCCHC), an organization committed to improving the quality of health care in correctional settings, specify in their standards that “inmate workers or volunteers may be used to perform certain tasks, but they are not a substitute for professional health staff.” Incarcerated persons who work in hospice programs must be trained in the tasks they are expected to perform and supervised by a qualified health care professional [93,94]. In many facilities, the training received by peer caregivers exceeds that of volunteers in the outside community [95]. Such trainings are generally provided by community-based palliative care organizations or university-based programs that have established relationships with prison facilities and are able to provide high-quality educational programs in basic caregiving and hospice care [92,96]. Topics may include modules on the philosophy of hospice care; death and dying (grief and bereavement); stress management; universal health precautions; infectious disease control; transfers and fall risks; shower safety; common disease processes (eg, dementia, end-stage liver disease, cancer, or heart failure); effective communication with the cognitively impaired; de-escalation techniques; and nonpharmacologic means of symptom management including mindfulness, professionalism, confidentiality, how to sit with people who are dying, and how to be empathic listeners [87,95].

Exemplary programs that have been described in the medical literature or in the popular press include: the Gold Coat Program in the California state prison system; the hospice worker program at Louisiana State Penitentiary, whose hospice program is highlighted in a photographic essay entitled “Grace Before Dying”; and the Robert Alexander Hospice at the California Medical Facility, whose peer caregivers were highlighted in a photo essay in the New York Times Magazine [87,95,97].

Partnerships between correctional and community health care professionals — Correctional facilities have begun to develop palliative care protocols and procedures to minimize the “case by case” approach, which results in inconsistent care. However, the uptake of palliative care programs in correctional settings is complex and requires system-level interventions [98]. For this reason, partnerships between correctional and medical staff are essential to successful implementation of hospice and palliative care programs. On the correctional side, this partner may be an associate warden or captain who is tasked with ensuring access to community standard health care or compliance with the Americans with Disabilities Act (ADA). Others may have an interest in championing such care due to personal beliefs or experiences in caring for older or dying friends or family. Sharing best practices from facilities that have implemented successful programs can allow individuals to see the potential for change and increase buy-in throughout the facility [63].

Complex barriers can interfere with the smooth provision of palliative care for seriously ill patients in correctional facilities and must be overcome by medical-correctional partnerships. Examples of helpful strategies include:

●A “medical hold” system to ensure that patients in the midst of critical medical treatment are not unexpectedly transferred to another state prison.

●Development by medical and correctional staff of “heat plans” to safeguard the health and safety of medically complex or frail patients. Such heat plans flag patients at high risk for poor thermoregulation (eg, the very old, or persons taking certain high-risk medications). In order to minimize the potential morbidity and mortality from exposure to extreme heat, flagged patients may by allowing to return early to their cells and have access to extra ice, water, or more frequent showers.

●Correctional officers can receive basic training in the needs of medically ill patients and should be encouraged by their supervisors to use common sense and compassion in the distribution of basic hygiene and care items. For example, a correctional officer should be empowered to give patients with loose stool additional toilet paper without a doctor’s order. Similarly, medical input should not be required for an officer to allow an extra shower to an older patient with incontinence.

●Visitation policies can be designed to meet the needs of patients with serious illness. For example, families/others may travel great distances and at significant expense to visit their loved ones who are seriously ill. Successful palliative care programs provide relaxed visitation policies that include expanded time for conversations relating to closure, enable multiple family members to visit together, and allow minor children access to parents and grandparents. Some facilities will even make exceptions for family members with prior felony convictions to visit patients with limited prognoses or who are actively dying.

Ample anecdotal and early research also suggest that palliative care programs in correctional facilities can have a positive impact on the health and wellbeing of correctional officers. One study analyzed data from 21 states and found that the risk of suicide among correctional officers in state prisons is 39 percent greater than the general working population and job dissatisfaction is common [99]. A qualitative study of correctional officers found that many experience in their personal lives pervasive feelings of paranoia, detachment, withdrawal, and an “us-them” mentality [100]. Positive experiences caring for those with chronic or terminal illness can provide opportunities for custodial staff to find job satisfaction and recognize that compassion and security are not mutually exclusive [101].

CHARACTERISTICS OF A SUCCESSFUL PRISON HOSPICE — Essential elements for a successful hospice program in the correctional setting include administrative support, implementation of quality standards as outlined in the Guiding Responsive Action for Corrections in End-of-Life (GRACE) Project (see 'Recommendations of others' below) and in the National Hospice and Palliative Care Organization (NHPCO) Quality Guidelines, collaboration with outside agencies, a well-trained staff, a physical space conducive to socializing and visiting, an interdisciplinary team model, peer caregivers, and bereavement services. The National Commission on Correctional Health Care (NCCHC) includes as a compliance that “qualified health care professionals working in (a correctional hospice program) have received training in basic hospice theory and techniques [93].”

Over the last 25 years, approximately 70 prison hospice programs have been developed across the United States to address the need for high-intensity palliative care for patients with serious illness nearing the end of their life. Such programs meet an ethical need to provide dignity and comfort at the end of life and have also proven to be financially beneficial in terms of avoiding unnecessary, expensive, and undesired hospitalizations. Several model hospices have been described in the literature, including the California Medical Facility (CMF) Hospice that opened in 1992 and the Louisiana State Penitentiary (LSP) Hospice that began providing services in 1998 [102,103].

Centralized hospice unit versus dedicated hospice beds in each facility — There are arguments to be made for both centralized and local models of hospice care. When services are provided at a centralized location (eg, the state has one dedicated prison hospice), staff have more exposure to caring for the dying and develop an enhanced skillset not possible with only a few admissions per year. In addition, centralized facilities can offer resources dedicated to the care of this population. In addition, a dedicated hospice unit allows for the development of a nurturing, calm, and comfort-based atmosphere. By contrast, the local model, in which one or two beds in a medical unit are designated as “hospice beds” when needed, can be beneficial in that it allows patients to remain at a facility where they may have been for many years and thus maintain their existing social bonds. Additionally, a local model may allow patients to be housed closer to their families/loved ones in larger states. While transfer to an outside hospice is the norm in many European nations, in the United States compassionate release is rarely achieved [45,47].

Admission criteria — Admission criteria for prison hospice programs are generally similar to community standards, although many prison hospice programs have increased flexibility with respect to medications and prognosis. In general, patients must be expected to have a terminal diagnosis and (in most cases) a prognosis of less than 6 to 12 months (varies by jurisdiction). The patient should be afforded full autonomy in the decision to enter hospice and must opt for palliative care rather than curative care. If a patient does not have decision-making capacity, then a health care proxy or surrogate decision-maker should help to make the decision about whether to transfer to hospice. In cases where no surrogate can be identified or found, an institution or hospital ethics committee can be used to help determine whether or not a referral to hospice is in the best interest of the patients. Although the majority of patients admitted to a prison hospice program have signed a do not intubate (DNI)/do not resuscitate (DNR) request, it is not an absolute requirement in most facilities. As in the community, a patient must accept the philosophy and comfort-based goals of the hospice program, but a few may be uncomfortable signing a DNI/DNR, often due to a profound lack of trust in the correctional health care system and a concern that endorsing a “no code” status will equate to “no care.” In most jurisdictions, those who qualify for hospice also meet qualifications for compassionate release, and an application should be requested upon hospice admission for all patients hoping to die in the community. (See 'Compassionate release' above.)

Community-prison palliative care and hospice partnerships — Community collaboration regarding the provision of palliative care and hospice services has many benefits for prisons and jails, including access to training opportunities, educational resources, consultative support, and community placement resources. Programs that have been described in the literature include the CMF Hospice, which has a training relationship with the University of California, Davis, and several community-based hospice organizations; and the LSP, which collaborates with the University Hospital Community Hospice program at the Medical Center of Louisiana at New Orleans [102,103].

Although financial resources do not always allow for facility renovations, consideration should be given to optimizing the hospice environment. Both the CMF and LSP hospices have specialized physical spaces that were designed to create an environment that supports comfort and socialization with visitors on the unit.

Visitation policies — Access to visits with friends and family play a major role in allowing incarcerated persons to die with dignity and reach their goals at the end of life. Hospice staff should provide assistance in making contact with family and friends, facilitate visits, and provide a supportive environment including answering questions and providing bereavement services to visitors. Most correctional hospices have adopted more liberal visiting policies than those utilized for the general prison population. Most allow visits on a daily or near-daily basis and many allow unlimited visits once a patient reaches the final stages of life. In addition, some facilities have flexible visiting policies with respect to allowing minors and family members with a history of incarceration as security permits [102].

Once it is determined that a patient is in the final days of life, most correctional hospices allow for a peer caregiver or family member to be at the bedside around the clock [88] (see 'Use of peer caregivers' above). This practice not only provides comfort to the patient, but family members who are not able to be at the bedside due to distance or personal circumstance (eg, age, illness, or responsibilities) take great comfort in knowing that their loved one will not die alone. In addition, this practice can provide comfort to others in the system with life sentences who expect that they too will die in prison [96].

The interdisciplinary team in prison-based hospice — The interdisciplinary team model is a cornerstone of community hospice care and is reflected in national guidelines for prison hospices. For example, the Guiding Responsive Action for Corrections in End-of-Life (GRACE) Project Guidelines recommend that at a minimum the team include a clinician, nurse, mental health provider, and a chaplain. Current models may also incorporate dieticians, pharmacists, hospice administrators, custody (eg, officers, classification counselors, and administrators), peer caregivers, volunteer coordinators, patients, and family members [104].

The roles of team members are generally similar to those in the community with the following additional considerations:

●In a correctional setting, the chaplain often plays a vital role in family reunification, reconciliation, forgiveness, and closure. Given the limited resources available to incarcerated individuals, chaplains in correctional hospices should forge relationships with spiritual leaders of diverse backgrounds in the community who are willing to provide voluntary services to the dying, so that rituals specific to their belief systems can be supported. For example, at the CMF Hospice, volunteer Thai Buddhist monks and Native American leaders have conducted rituals and ceremonies, and Muslim and Jewish volunteers have participated in ritual cleansing ceremonies and preparation of bodies for their final resting. As in the community, correctional chaplains provide bereavement support to families and other loved ones in addition to potential logistical support in navigating the process of obtaining their loved one’s remains.

●Given the high percentage of individuals with mental illness who are in the criminal justice system, a significant number of those in a correctional hospice setting will struggle with chronic mental illness. Mental health professionals must be part of the hospice team, available to treat anxiety, and address existential challenges associated with the dying process in the context of long-term mental illness.

●Community volunteers may be able to provide support through recreational therapy, companionship, spiritual support, and donations. In a correctional hospice, community volunteers require additional security clearance and training regarding safety procedures and expectations. Procedures for clearance and training of volunteers should be included in institution hospice policy.

●Peer caregivers are critical team members in successful prison hospice programs. In addition to the duties described above (see 'Use of peer caregivers' above), peer caregivers are available to sit with the patients on vigil 24 hours a day, seven days a week. Policy should include accommodations to allow these essential workers to be available, even in the case of institution lockdowns (in which movement throughout the facility is otherwise limited or halted entirely).

●The special dietary needs of the dying can be a challenge, given the limitations of institution diet plans. Dietary services may need to be creative in meeting the needs of this population. In some cases, peers and community organizations have donated either food products or funds to correctional hospice programs to allow for specialty items that are appealing to the dying, such as ice cream, pudding, ginger ale, and soups.

●In addition to the provision of standard palliative and end-of-life care, the correctional hospice clinician should be adept at navigating the compassionate release process as outlined in their jurisdiction. They should play an active role in determining when a patient is in the final stages of life, initiate a vigil, and notify the family of the impending death so that they have the opportunity to make a final visit when possible. The correctional hospice clinician also should provide family notification at the time of death to give them the opportunity to ask questions. In addition to providing standard palliative care, nursing staff in correctional palliative care units also may have the additional role of giving guidance and supervision to the peer caregivers. (See 'Compassionate release' above.)

●Custody also plays a crucial role in the success of a correctional hospice program. In the majority of correctional hospices, officers do not receive formal training regarding hospice philosophy, but several studies have reported the educational impact of on-the-job experiences for officers working in the correctional hospice setting [88,92,101,103]. In some hospices, the officers are involved in the interdisciplinary team meetings as regular team members and in others they participate on an as-needed basis. Their support is critical in maintaining a secure and calm environment and supporting the movement of patients, peer caregivers, and visitors.

●Bereavement services may be provided by a designated bereavement coordinator or be included in the role of the chaplain, social worker, or other team member. These services should be provided to peer caregivers, other inmate "family," and staff. One model for supporting family and friends of the deceased in the free community is through phone and mail follow-up and referral to resources in their local area [92,96]. Some facilities organized memorial services on a regular basis to honor the lives of those who have passed. In some cases, the families/loved ones are permitted to attend these services [96].

SPECIAL CONSIDERATIONS IN A JAIL SETTING — The average length of stay in jail is 30 days and 95 percent of all jailed persons are released within six months. These individuals are at high risk for poor health outcomes, acute care use, and mortality. As a result, jail detention can provide a unique opportunity to link medically complex older adults with palliative care needs to the appropriate community health and social services after release [81,105].

Many individuals held in jail have not yet been sentenced and remain in custody due to being unable to meet their bail or awaiting their court hearing. For those with serious medical illness, expedited case disposition should be considered. In these cases, a compassionate release request initiated by medical staff should be submitted to the courts, as significant medical illness is sometimes taken into account by the sentencing judge should that individual be convicted. In many cases, jail facilities are not equipped to care for the complex palliative care needs of patients with life-limiting illness. In these cases, jail-based health care professionals may find success in contacting the Public Defender assigned to the patient's case to determine whether a petition to the courts for a community corrections placement should be pursued.

Only one jail-based hospice program has been described in the medical literature. Based at the Broward County jail in Florida state, the hospice was opened in 1995 through a collaborative partnership with a community-based hospice, which provided palliative care inside the jail. The community partner also assisted in creating a transitional care plan when patients were released to the community. Several challenges related to having a jail-based program were reported, including initial attitudinal resistance, difficulty accessing appropriate medical supplies, difficulty meeting the special dietary needs of hospice patients, complex visiting logistics, and the high risk of patient isolation. Because the average time in jail is much shorter than in the prison system, the majority of patients do not die in custody. The Broward county program used the contact with these patients as an opportunity to connect a high-risk patient population to appropriate resources in the community in order to die with dignity outside of jail [106].

RECOMMENDATIONS OF OTHERS — In 2000, the Guiding Responsive Action for Corrections in End-of-Life (GRACE) Project put forth the first clear standards of practice for palliative care in the correctional setting [104]. These standards include the availability of palliative care for all incarcerated patients who have been diagnosed with a terminal illness. In 2009, the National Hospice and Palliative Care Organization (NHPCO) developed Quality Guidelines for Hospice and End-of-Life Care in Correctional Setting, organized around 10 key components [93]. These include but are not limited to: patient and family-centered care, ethical behavior and advocating for patient rights, clinical excellence and safety, and inclusion and access for all.

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Health care of criminal justice-involved populations".)

SUMMARY AND RECOMMENDATIONS

●The number of older adults in the criminal justice system is increasing, and there is a growing need for palliative care services within the correctional setting. Most incarcerated persons have similar end-of-life goals as those in the community: they want their symptoms controlled, to spend time with their family, and to be able to find meaning in their lives (See 'Introduction' above.)

●Incarcerated patients experience the burdens of chronic medical conditions and physical disability at rates that are higher, and approximately 10 to 15 years earlier, than individuals in the community. (See 'Geriatric and palliative care issues in incarcerated persons' above.)

●Incarcerated persons may have unique psychosocial palliative care needs with regard to the challenges and concerns of grief, loss, finding meaning or purpose in their lives, and a desire for closure. Trauma-informed end-of-life care is particularly important when working with this population. (See 'Unique psychosocial concerns' above.)

●Incarcerated persons have a court-mandated right to a community standard of care, including access to palliative care services when diagnosed with a serious or life-limiting illness. (See 'Access to health care' above.)

●There are many barriers to the provision of palliative care services in the correctional setting, including challenges to accessing health care services, lack of trust of the medical system, custodial and institutional limitations, lack of patient control over their situation, lack of appropriate accommodation for debility, potential for victimization, and isolation from friends and family. (See 'Barriers to palliative care' above.)

●The ethics of palliative care do not change when an individual is incarcerated. As in the community, the principle of autonomy holds true with respect to medical decision-making. (See "Ethical issues in palliative care".)

●Incarcerated persons have special considerations for symptom management due to their limited access to medications. (See 'Access to medication' above and 'Pain management' above.)

●Incarcerated persons may require off-site palliative care, and medical providers should be aware of certain practical issues regarding transport which may be barriers to this care. (See 'Off-site care' above.)

●Timely advance care planning (ACP) is essential as there can be significant challenges identifying and contacting surrogate decision-makers and end-of-life goals can be more complex to achieve given the restrictions of incarceration. (See 'Facilitation of advance care planning' above.)

●Institutional medical and custodial administration must work together to create pathways for those at the end of their lives to die with dignity through increased flexibility with visiting, phone communications, community volunteer access, and programs that allow for legacy building, give meaning to life, and provide distraction from symptoms and existential fears. (See 'Facilitation of advance care planning' above.)

●Clinicians caring for incarcerated persons should be aware of the policies and procedures surrounding compassionate release and medical parole in order to initiate and support patients who meet qualifications in achieving release when possible. (See 'Compassionate release' above.)

●Peer caregivers, when properly trained, are an invaluable resource to correctional palliative care programs. Facilities who have utilized such programs have demonstrated benefits to patients, peer caregivers, and staff as well as financial savings. (See 'Use of peer caregivers' above.)

●Prison hospice programs meet an ethical need to provide dignity and comfort at the end of life and have also proven to be financially beneficial in terms of avoiding unnecessary, expensive, and undesired hospitalizations. An interdisciplinary team is essential. (See 'Characteristics of a successful prison hospice' above and 'The interdisciplinary team in prison-based hospice' above.)

ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Dallas Augustine, who contributed to the most recent revision of this topic.