Palliative and End-of-Life Care in Correctional Settings

Abstract

The prison population in the United States has grown fivefold in the last 27 years. Like the general population, the inmate population is aging. With age comes infirmity, disability, and chronic conditions that may, over the course of years or decades, lead to death. Inmates enter the prison system in poorer health than their age-matched free counterparts. A growing number of inmates will die in prison. A few will receive medical or compassionate release in order to die “outside the walls.” Whether inside or outside, these dying men and women are entitled to receive high quality health care, including palliative care.

Dying inmates face many of the same issues as the terminally ill in free society. However, death behind bars also poses some unique challenges to the dying, their prison family, their biological family, their caregivers and health care providers, custody staff, prison administration, and society as a whole.

Social workers can play an important role in the care of these individuals and the people they are connected to both in prison and beyond its confines. This article provides important background for understanding the unique and the ubiquitous aspects of dying inmates and offers direction to social work professionals in serving these inmates, their loved ones, their custodians, and the larger society.

KEYWORDS:

• hospice care
• palliative treatment
• prisoners' medical care
• social work with criminals
• terminally ill

INTRODUCTION

The composition of the prison population in the United States today offers a distorted reflection of the general population. Inmates are sicker, come from lower socio-economic circumstances, have had less access to primary care, and are more ethnically and racially diverse. This leads to disproportionately greater incidence of chronic and life-limiting conditions like diabetes, heart disease, high blood pressure and sickle cell disease, all known to be higher among minority populations. Inmates also have higher incidence of adverse health outcome predictors including HIV infection, hepatitis C, substance abuse, and mental illness. Both the general and the prison populations are aging, and a sizable percentage will either die as a result of chronic conditions or from associated complications whether we die free or behind bars. Though estimates vary with regard to how unfavorably inmates' health compares with age-matched “free” peers, in general, inmates suffer from health conditions comparable to their counterparts in free society who are 10 or more years older.

Social workers have a significant role to play in meeting the needs of infirm and dying inmates. Across the continuum of care social workers are likely to contribute to meeting important goals of care for inmates near the end of life and their families, whether they gain their freedom or remain incarcerated. Some child welfare workers will become involved with families who have a parent or grandparent dying in prison; indeed, the incarceration of a parent or guardian can cause a referral to child services in the first place. School social workers may encounter children having difficulties as a result of a parent's incarceration and resulting hardships. Human assistance eligibility workers and social services practitioners are faced with recently released inmates with multiple needs such as health-care benefits, income, housing, job placement services, substance abuse treatment and recovery maintenance programs. Families may also be impoverished or homeless by virtue of a breadwinner's incarceration or face restrictions limiting access to safety net services because of an applicant's prior drug conviction (Hirsch, 2001).

This article is focused on promoting social work competency in addressing the palliative care needs and end-of-life considerations for inmates and the families, friends and communities they touch. It offers an overview of the prison health-care system and data describing past, present, and projected inmate demographics.

DEFINITIONS AND METHODOLOGICAL CONSIDERATIONS IN REPORTING DEMOGRAPHICS

Vigilance is required when reporting and discussing inmate demographics. The terms “prison” and “prisoner” are often used colloquially to describe those in jail as well as inmates in state and federal prisons. Consequently, care is required to ensure that comparable populations are being described when looking at issues such as the growth in prison populations, the racial distribution of inmates, and changes in the size and percentage of various subsets within the prison population.

In this article, the term “prison” refers only to facilities that house those who committed federal or state offenses, unless otherwise noted. Individuals housed in such facilities have already been convicted of a crime and usually are serving sentences of greater than 1 year. However, several important federal categories of the incarcerated are not counted in these numbers, including people held in military prisons or brigs, detained by Immigration and Customs Enforcement (ICE), or detained as “enemy combatants.” Other federal and state groups not accounted for in these figures include forensic psychiatric patients in mental hospitals (the criminally insane), people in jails, in work-release facilities, on probation or parole, and in juvenile facilities.

A number of methodological issues merit brief mention when examining the numbers and rates of incarceration in the United States. The U.S. Department of Justice, Bureau of Justice Statistics (USDOJ-BJS), which serves as the principal source for data reported herein, has changed its reporting criteria and format over the years. Two separate reports are issued each year by USDOJ-BJS, one titled “Prisoners in [year] Bulletin” (Beck, 2000b; Beck & Gilliard, 1995; Beck & Harrison, 2001; Beck & Mumola, 1999; Gilliard & Beck, 1998b; Harrison & Beck, 2002, 2003, 2004, 2005b, 2006b; Mumola & Beck, 1997; Sabol, Couture, & Harrison, 2007; West & Sabol, 2008), and the other “Prison and Jail Inmates at Midyear [year]” (Beck, 2000a; Beck & Karberg, 2001; Beck, Karberg, & Harrison, 2002; Gilliard, 1999; Gilliard & Beck, 1997, 1998a; Harrison & Beck, 2005a, 2006a; Harrison & Karberg, 2003, 2004; Sabol, Minton, & Harrison, 2007; Sobel & Couture, 2008; West & Sabol, 2009). The former provides cumulative data on federal and state prisoners and the latter offers a snapshot of incarcerated populations as of June 30 of each year and also includes the jail population. Annual reports dating from 1980 to 1993 are available in paper; reports from 1994 to the present are available online. Starting in 1996, standardized formats were adopted and over the years components of these reports have been added or revised.

Another methodological challenge in reporting is with regard to older inmates, who are categorized into several different age brackets by the USDOJ and others. Anderson (Anderson & Hillard, 2005) considers 50 years of age as the starting point for inmate senior citizenship. Yampolskaya (Yampolskaya & Winston, 2003) use 55 as the line of demarcation. The U.S. Department of Justice, Bureau of Justice Statistics uses various age descriptors in its reports. For example, the 1997 Special Report on the Medical Problems of Inmates uses “45 and older” as the final tier in breaking the inmate population down by age (Maruschak & Beck, 2001). However, in the same year, the Prisoners in 1997 Bulletin lists 45–54 as its second-highest age bracket and 55 or older as the top age bracket (Gilliard & Beck, 1998b). In fact, this latter age distribution model is followed through most of that series, though starting in 2007 the top bracket (55 or older) is broken into three: ages 55–59, 60–64, and 65 and older. This evolution of the age brackets being tracked suggests recognition of the changing demographics of the inmate population.

Finally, in the literature as with the DOJ's mid-year report, the most common pairing of disparate incarcerated populations combines detainees in prisons and jails. Yet these are two distinct populations. In contrast to prisons, jails are usually operated by a city, county, parish, or other municipal entity and jail inmates are often awaiting trial or, if already convicted, individuals are almost always serving sentences of less than 1 year. With respect to general health and mental health care, jails and prisons have very different turnover rates and track records of providing timely medical assessment and treatment (Wilper et al., 2009), leading to different opportunities to improve health care in general and palliative care specifically in each setting.

INMATE DEMOGRAPHICS

The prison population has increased sharply in the last 27 years. This is true both in terms of absolute numbers and the rate of incarceration. Between 1991 and 2007, the most recent year for which we have data, the prison population doubled (+106%) from 773, 919 to 1,595,043 (Gilliard & Beck, 1998b; Sobel & Couture, 2008). Going back still further to 1980, the prison population has increased more than five-fold in 27 years (see Table 1). During that same period, the rate of incarceration, or the number of individuals per 100,000 of population who were incarcerated grew from 139 to 509—a 366% increase (see Table 2). By either measure, many more U.S. residents are incarcerated today than 27 years ago.

TABLE 1 Comparison of Census 2000 and Incarcerated Populations (Beck & Gilliard, 1995; Beck & Harrison, 2001; U.S. Census Bureau, 2002; West & Sabol, 2008)

	U.S. Census	State & federal inmates
	2000^4a	1980^1,4b	(%) 1990^3,4b	2000^4b	2007^4b
White	75.1% (211,460,626)	52.3% (165,400)	35.6	37.0% (471,000)	36.6% (521,900)
Black	12.3% (34,658,190)	46.5% (146,900)	44.5	47.9% (610,300)	41.1% (586,200)
Hispanic	12.5% (35,305,818)	—	17.4	17.0% (216,900)	22.3% (318,800)
Asian ^2	3.6% (10,242,998)	—	—	—	—
Native/Indigenous ^2	0.9% (2,475,956)	—	—	—	—
Total	100% 281,421,906	100% 315,974		100% 1,273,469	100% 1,427,300

TABLE 2 Sentenced Prisoners per 100,000 Resident Population, 1980–2007 (Beck & Gilliard, 1995; Beck & Harrison, 2001; Gilliard & Beck, 1998b; West & Sabol, 2008)

	State and federal inmates
	1980	1990	2000^1	2007
White Men/Women	168/6	339/19 ^3	410/33	481/50
Black Men/Women	1,111/45	2,376/125 ^3	3,188/175	3,138/150
Hispanic Men/Women	— ^2	548 ^4	1,419/79	1,259/79
Total	139	297	478	506

One can argue the extent to which the war on drugs (Institute for Policy Studies, 1999; Reynolds, 2008), stricter sentencing and three-strikes legislation (Sorensen & Stemen, 2002; Thigpen & Hunter, 1998), and the de-institutionalization of many of the mentally ill (Harcourt, 2006) have played a part in this growth. Some even argue that a succession of U.S. administrations consciously engaged in a carefully orchestrated effort that

neglect(s) social disadvantage, the material reality of poverty and marginalization, and hit(s) offenders hard with harsher laws, zero-tolerance policing, and uncompromising prison regimens leading to bursting prisons, devastated cities and a violent crime rate still unmatched in the developed world. (Scraton & McCulloch, 2006, p. 3)

The causes are likely many and interwoven. Regardless, the result is the same: a burgeoning prison population.

The inmates who make up that population are also aging (Cummings, 1999; Mara, 2002; Mitka, 2004; Yorston, 2006). In concrete terms, between 1991 and 1997, the percentage of inmates between the ages of 35 and 44 grew from 23% of the overall prison population to 30%, growing by almost one third (Gilliard & Beck, 1998b). Between 1991 and 2007, the percentage of inmates 55 and older grew from 3.4 to 4.2% (Gilliard & Beck, 1998b; West & Sabol, 2009). The fastest growing categories of inmates are women, minorities, and older inmates. Between 1990 and 1996, the number of prisoners per 100,000 residents increased 66% among persons age 35 to 39; 75% among persons 40 to 44; and 71% among persons 45 to 54 (Gilliard & Beck, 1998b, p. 10).

Translating these trends into actual numbers is complicated by the fact that USDOJ age-indexed figures include prison and jail populations. On June 30, 2007, there were 50,500 individuals between 55 and 59 years of age incarcerated; 21,700 between 60 and 64; and 17,700 in the 65 and older category. In adjusting for locus of detention, jail populations tend to skew toward the lower or younger age brackets, while prisons house proportionately larger numbers of older detainees.

The racial/ethnic composition of the prison population has also been changing. Another brief methodological note is in order regarding these statistics. Much of the data from the 1970s, 80s, and early 90s divides inmates only into “Black” or “White” and male or female. Using USDOJ-BJS definitions from 1990, Hispanics could be of any race (Gilliard & Beck, 1998b). More recently however, “Hispanic” has become an independent category tracked by the Department of Justice. Data on the racial composition of the prison population are put side by side with the report on Census 2000 (see Table 1). Though there is not a perfect fit between categories used by these two government departments, the numbers still tell a compelling story of racially disproportionate incarceration rates.

By any measure, Blacks and Hispanics are grossly overrepresented in the prison population. There is a complex relationship between race, health disparity, and incarceration; it is difficult to determine whether a causal relationship exists between these factors, and if so, in which direction causality points (Keen & Jacobs, 2009; London & Myers, 2006; Massoglia, 2008). Nonetheless, given the composition of the population and the abundant literature on health disparities by race (Barr, 2008; Cooper & Kaufman, 1998; Gravlee, 2009; Kaufman, 2008), the argument that inmates experience poorer health than their free counterparts is self-evident.

Though women comprise a relatively small percentage of the overall inmate population, that percentage is rising steadily. Women in general, and minority women in particular, are one of the fastest growing subsets of inmates. Women face additional health-care challenges both in free society and in the prison system. Women constitute the majority of single parents, and as such, their incarceration causes significant collateral risk to minor children. Women are at greater risk of being uninsured and tend to cycle through prison more quickly than men. The disruption in continuity of medical care and risks to long-term health caused by incarceration and discontinuity of care are amplified for women (Clear, Rose, & Ryder, 2001; Sheu et al., 2002; Stephenson et al., 2005; van den Bergh, Gatherer, & M⊘ller, 2009; Visher & Travis, 2003). Minority women are at even greater risk than their White counterparts.

One final cautionary note on inmate demographics is necessary. It is important to not have a monolithic view of the “free” and “incarcerated” populations. A significant number of people cycle between these two settings. The data in Table 3 give an indication of just how much circulation there is between the “free” and “imprisoned” worlds and the degree to which recidivism contributes to the volume of people passing through the system in a year's time.

TABLE 3 State and Federal Releases, Admissions, and Reasons for Admission for Selected Years 2000–2007 (West & Sabol, 2008)

	Released	Admitted	New court commitments	Parole violators^1
2000	604,858	625,219	350,431	203,569
2002	630,176	661,082	392,661	207,961
2005	698,459	733,009	421,426	232,229
2007	725,402	751,593	435,733	248,923

PRIVATIZATION OF CORRECTIONAL FACILITIES

Protecting the health-care entitlement of inmates in private as well as public detention facilities, at sites outside a state's jurisdiction and at the hands of contracted vendors—particularly those needing palliative interventions or end-of-life care—is of great importance to the social work profession. The protection of entitlements to health care and mental health services goes to core bioethics principles (autonomy, justice, beneficence, and nonmaleficence) and the social work Code of Ethics—particularly service, social justice, and the dignity and worth of the person (National Association of Social Workers [NASW], 2008b).

Most prisons and jails are public, i.e., operated by the federal government or a particular state government or municipality. However, private prisons and jails also operate at the federal, state, and local levels. Private detention facilities represent a growing percentage of overall prison and jail capacity (Blakely & Bumphus, 2004; Chang & Thompkins, 2002), are operated on a for-profit basis either by privately held or publicly traded companies, and generally have responsibility for security, daily management and operations, education and rehabilitation programs, and basic health care (Lundahl, Kunz, Brownell, Harris, & Van Vleet, 2009).

Considerable controversy exists in the public policy discourse as to the efficacy, cost savings, and ethics of privatizing prison services (Culp, 2005; Genders, 2002; Shichor, 1998). Though much of that debate is beyond the scope of this article, one area of potential cost savings that is often examined involves comparing how well public and private detention facilities meet the health-care needs of detainees (Lundahl et al., 2009; Thomas, 2005). A related discourse involves the outsourcing of prison services, whereby one state contracts with another entity (primarily prisons in other states) to house and manage inmates in excess of a given state's capacity. A third related discourse is the outsourcing of some services by a prison operator, such as health services, which are often outsourced in whole or piecemeal.

INMATE HEALTH STATUS

The USDOJ issues special reports on inmate health issues. These include a regular series of reports on HIV in prisons (and jails) as well as reports on the growth of the prison population overall (USDOJ, 1995), the medical causes of death in state prisons 2001–2004 (Mumola, 2007), the medical problems of inmates (Maruschak & Beck, 2001), all causes of death in state prisons 2001–2006 (Mumola & Noonan, 2007), and a special report on Hospice and Palliative Care in Prisons, issued by the USDOJ's National Institute on Corrections Information Center (Thigpen & Hunter, 1998). Likewise, in 2004, again in recognition of the changing demographics and health needs of the inmate population, this same entity issued its report, Correctional Health Care: Addressing the Needs of Elderly, Chronically Ill and Terminally Ill Inmates (Anno, Graham, Lawrence, & Shansky, 2004).

Various factors contribute to increased morbidity in inmates. Incarceration rates disproportionately favor racial and ethnic minorities, particularly Blacks and Hispanics (Golembeski & Fullilove, 2005). Whether and to what extent there is a genetic racial or ethnic predisposition to certain conditions is a matter of open debate (Kaufman, 2008; Latimer et al., 2007; O'Donnell & Kannel, 1998). It is difficult to establish a causal connection while effectively controlling for many of the other factors: SES, access to prevention, screening and routine health care, diet, living conditions and occupation-associated risks (and others listed above). What we can say is that for some combination of reasons—possibly including inherited predisposition and acquired risk—Blacks and Hispanics are at greater risk of developing diabetes, heart disease, high blood pressure and its sequelae (stroke, kidney failure, vascular disease), and Blacks and Asians are at elevated risk of sickle cell disorders (a potential genetic factor). The over-representation of African American and Latino men and women in prison, in combination with the lower educational attainment and SES of the inmate population overall and the harmful synergies between mental health and chronic illness which many inmates experience, yields a population who are sicker than their age-matched free peers (Tanne, 2009; Wilper et al., 2009)

One element of lower SES in the United States is the lack of access to health-care services including preventive care, primary care, routine screening and affordable medications. The uninsured and underinsured, the majority of whom are of lower SES, often have to forego medications to treat chronic conditions like diabetes or high blood pressure. These individuals often have more limited access to healthy, fresh food and many live in neighborhoods with increased risk of violence. Most usually must rely on emergency departments or urgent care clinics for primary care, resulting in nonexistent continuity of health care. Many low-income individuals work more than one job, perform labor that takes a greater toll on physical well-being or may contain an elevated risk of on-the-job injury, lack even basic employer-provided health care, and lack the resources and time to make prevention, screening, and health promotion a routine part of their lives. Inmates experience diseases commonly found in individuals 10 years their senior in free society (Linder & Meyers, 2007; National Hospice and Palliative Care Organization [NHPCO], 2008/2009). From a health status perspective, then, inmate health needs in the “65 and older” bracket most closely resemble those of people over 75 in free society. More importantly, in the inmate population geriatrics begins at age 50.

Many of the crimes leading to incarceration also have an adverse impact on health. The use of illicit or controlled substances—particularly injection drug use—increases the risk of exposure to HIV, hepatitis C, and other blood-born pathogens. Methamphetamines and crack cocaine have many adverse health consequences, including respiratory and cardiac irregularities, increased blood pressure, anorexia, stroke, permanent brain damage, rotting teeth, hyperthermia, insomnia, paranoia, depression, and convulsions (National Institutes of Health-National Institute on Drug Abuse [NIH-NIDA], 2008). Poverty, resulting in cramped or unhealthy living conditions, increases the risk of tuberculosis. Prostitution and bartering sex for drugs increases the risk of HIV, hepatitis C, and sexually transmitted diseases while increasing the risk of violence-related injury. Poor diet contributes to obesity and its many attendant conditions including diabetes, kidney failure, hypertension, and heart disease. Violent crime sometimes also results in permanent disability.

Table 4 offers one final comparison of the general and prison populations. It shows the 10 leading causes of death for each population. While six causes of death are common to both groups, the remaining four unique to the inmate population are liver disease, AIDS, self-harm or suicide, and digestive diseases. These are all consistent with observations about the medical vulnerabilities as well as the economic and biopsychosocial milieu from which the inmate population is primarily drawn.

TABLE 4 Ten Leading Causes of Death in the United States, 2004 (Centers for Disease Control and Prevention/National Center for Health Statistics, 2004; Mumola, 2007)

General population	Prison population
1. Heart disease	1. Heart disease
2. Cancer	2. Cancer
3. Cerebro-vascular disease (stroke)	3. Liver diseases
4. Respiratory disease (COPD/Emphysema)	4. AIDS
5. Accidents	5. Intentional self-harm/suicide
6. Diabetes Mellitus	6. Respiratory disease (COPD/Emphysema)
7. Alzheimer's disease	7. Cerebro-vascular disease (stroke)
8. Influenza/pneumonia	8. Sepsis/septicemia (systemic infection)
9. Kidney diseases	9. Influenza/pneumonia
10. Sepsis/septicemia (systemic infection)	10. Digestive disease

INMATE HEALTH-CARE ENTITLEMENT

The basic precept laid out by the courts is that “incarceration itself, not sub-standard health care, is the intended punishment for criminal acts” (Linder & Meyers, 2007). Though there have been dissenting voices over the last several decades, the judiciary has stepped in on many occasions to define and clarify the health-care benefits to which inmates must have access.

Several key legal decisions are frequently cited in affirming inmates' right to health care comparable to the free community. In 1976, through its ruling in Estelle v. Gamble (1976), the Supreme Court held that “deliberate indifference to serious medical needs of prisoners constitutes the unnecessary and wanton infliction of pain, proscribed by the Eighth Amendment” (of the United States Constitution, which prohibits cruel and unusual punishment), while affirming the aforementioned precept by stating that the “denial of medical care is surely not part of the punishment which civilized nations may impose for crime.” In Wellman v. Faulkner (1983) the Federal Seventh Circuit Court reinforced this precept, stating that “when a state imposes imprisonment as a punishment for crime, it accepts the obligation to provide persons in its custody with a medical care system that meets minimal standards of adequacy. This obligation is enforceable in federal court, since inadequate medical care for prisoners violates the Eighth Amendment,” an obvious reference back to the Estelle v. Gamble ruling 7 years earlier.

In Ramos v. Lamm (1980), the court more explicitly defined the health-care obligations assumed by the incarcerating power, stating that “deliberate indifference” can be evidenced either by “repeated examples of negligent acts which disclose a pattern of conduct by the prison medical staff” or it can be demonstrated by “proving there are such systemic and gross deficiencies in staffing, facilities, equipment, or procedures that the inmate population is effectively denied access to adequate medical care.”

Federal courts have further affirmed that mental health falls under the rubric of overall health care. In 2004, the court sided with death row inmates in determining that inmates were afforded insufficient mental health care, in violation of the Eighth Amendment. The court cited the isolation and idleness, squalor, poor hygiene, temperature, and the noise of extremely psychotic prisoners, which created an environment that was “toxic” to the prisoners' mental health (Gates v. Cook, 2004). This litigation was brought on behalf of death row inmates and implicit in this ruling is that the inmate's health-care entitlement is irrespective of their security level or status (i.e., awaiting execution).

The judiciary has also clearly indicated a readiness to enforce their will. One well-publicized example is California. Despite numerous rulings and settlements regarding California's administration of inmate health and mental health services, a lawsuit filed in 2000 (Plata v. Schwarzenegger, 2005) alleged gross negligence and neglect of inmate health care and charged the California Department of Corrections and Rehabilitation (CDCR) with violation of the Eighth Amendment barring cruel and unusual punishment (“Medical Time Bomb Ticking,” 2007). Ongoing judicial monitoring was a key element of the settlement reached in 2002; in 2005, the judge providing that oversight took the drastic step of ordering that control of the prison medical care system be removed from the CDCR and placed in the hands of a court-appointed federal receiver (“Receiver Ordered for Prison Health System,” 2005; Udesky, 2005). That receiver was endowed with broad powers to reform the system and nearly unfettered access to state funds to accomplish those reforms.

While the judiciary has ruled repeatedly in favor of the inmate's right to quality health care, those rulings have arisen as a result of complaints about sub-standard care. There is a very long history of alleged inferior inmate health care having been adjudicated in the courts, and many claims have been rejected even as the cases referenced here were establishing precedent and defining inmates' rights. Underlying the historical fact of all these claims are stories of inmate suffering and death arising from inadequate health care.

In addition to judicial mandates and institutional policies and procedures, guidance and standards for the delivery of health services to inmates are informed by the guidelines published by the National Commission on Correctional Health Care (NCCHC, 2003), the Centers for Disease Control and Prevention (CDC, 2007), and a text on the practice of clinical medicine in correctional settings (Puisis, 2006).

HEALTH CARE IN CORRECTIONAL SETTINGS

Despite the tight control of activities and movement inherent in prisons, inmates have considerable autonomy when it comes to health care; accessing health services relies heavily on inmate self-identification. Though some aspects of care—like periodic tuberculosis testing—are compulsory, most health-care services are voluntary. Most prisons use a centralized model for distributing medications to inmates. An inmate on long-term therapy of any type has to be diligent about reporting for “pill call.” HIV positive inmates must decide for themselves whether to participate in HAART (Highly Active Antiretroviral Therapy) for disease management. Diabetics have to report to a central location for insulin injections and sometimes for blood sugar testing itself. Inmates in the general prison population (on the “mainline”) with depression or schizophrenia or bipolar disorder get their psychotropic medications at the same central location as those with high blood pressure or on hormonal therapy for breast or prostate cancer in most prisons. When a facility is in lock-down, ensuring the delivery of medications is even more complicated, and delayed or missed doses are a constant risk.

For inmates, a decision to self-identify as HIV positive, diabetic, depressed, or as a prostate or breast cancer survivor has implications. In some instances, it opens the inmate to hostility or ostracism and can telegraph vulnerability in an environment where the weak may be preyed upon. A recent large-scale survey of inmates (Wilper et al., 2009) found that a sizable number of inmates were not seen by medical personnel for a serious injury: 650 (7.7%) federal inmates surveyed, 12,997 (12%) in state prisons, and 3183 (24.7%) of jail detainees. Serious injury was defined as knife or gunshot wounds, broken bones, internal injuries, being knocked unconscious or sexually assaulted. All mental health professionals working with inmates should routinely be assessing for PTSD from prison or earlier in life.

In some instances, self-identifying leads to transfer either within the prison to a special housing unit or to another institution designated to handle particular populations; for instance, those who are HIV positive. Such a move can separate the inmate from their prison family and when inter-institution transfer is the case, from biological family as well. Many prison systems attempt to place inmates in facilities closest to their families to serve their time. A transfer can also result in loss or reassignment of their job as most inmates have specific duties they perform, many of which (laundry, food preparation, janitorial) support the daily operation of the institution. Sometimes these jobs earn the inmate canteen credit, greater freedom of movement within the institution, a sense of accomplishment or other benefits; reassignment or loss of position can have negative consequences, even when the move is intended to facilitate health services or enhance individual safety. There are also instances where an individual is identified involuntarily, either because fellow inmates in his/her housing unit are concerned or as a result of being so impaired as to be unable to maintain the daily routine in their current setting. Once identified, the institution's obligation to assess and treat is engaged.

PALLIATIVE CARE AND HOSPICE IN CORRECTIONAL SETTINGS

When inmates are facing a life-limiting condition or experiencing the debility and decline of old age, a growing number of prison systems have hospice care available. In addition to the previously discussed judicial mandates establishing the community standard of care as the governing principle for inmate health services, there is also an ethical mandate to provide inmates with quality health care (Cohn, 1999; Dubler, 1998; Watson, Stimpson, & Hostick, 2004), including at the end of life (Byock, 2002).

In 2008, NHPCO published Quality Guidelines for Hospice and End-of-Life Care in Correctional Settings, the most up-to-date and complete guide available (National Hospice and Palliative Care Organization [NHPCO], 2008). Comprehensive palliative care training is available for health professionals, including Education in Palliative and End-of-Life Care [EPEC] for physicians (Northwestern University, 2009) and End-of-Life Nursing Education Consortium [ELNEC] for nurses (Ferrell & Grant, 2009). Certification in hospice and palliative care is also available for health professionals, including a new Advanced Certified Hospice and Palliative Social Worker (ACHP-SW) designation through a program jointly sponsored by NHPCO and the National Association of Social Workers (NASW, 2008a). In addition, many resources are available in correctional health, prison hospice and palliative care, social work practice in palliative and end-of-life care, and hospice and palliative care in general.

Hospice is the accepted community standard for end-of-life care. The exact number of prison hospices in the United States is not known, though NHPCO puts the number at about 75 (NHPCO, n.d.). A 2001 U.S.–Canadian survey revealed that 25 of 49 reporting jurisdictions in the United States, Canada, and U.S. territories had hospices. Given the constraints of physical plant layouts, many prison hospices (22/25) are operated as part of institutional infirmaries; free-standing units are the exception (5/25) (Anno et al., 2004). Larger states like California, Texas, and New York offer palliative care in more than one location, and at times in more than one configuration; not all are designated hospices. Descriptions of some prison hospice programs are available elsewhere (Anno et al.; Bauersmith & Gent, 2002; Boyle, 2002; Evans, Herzog, & Tillman, 2002; Linder, Knauf, Enders, & Meyers, 2002; Ratcliff, 2000).

As the inmate population ages, there is likely to be a need for new long-term care facilities. As just one example, California had been examining the impact of older inmates on the corrections system for some time (Cummings, 1999); and now, as part of its court-mandated health system overhaul, California's prison health receiver has commissioned a needs assessment (Resch et al., 2007; Resch, Rhodes, & Hammett, 2008) and is proposing the construction of long-term care housing units.

Hospice Inmate Volunteers

About one half of the hospice programs in prisons use inmate volunteers and a number of prisons use inmate volunteers for other chronically ill prisoners. These individuals provide companionship and solace, may help inmates with basic activities of daily living, in some cases provide hands-on help to nursing staff, and sit vigil with the dying. The fear of dying alone in prison is nearly universal. By being able to have inmates sit with the dying around the clock, these prison hospices can provide a service their free counterparts can not. This is a source of pride among many inmate volunteers. In institutions with very supportive custody and administration, inmates sitting vigil may be the rare exception when a facility is otherwise in lockdown. When inmate volunteers are unable to be with the dying, this can be a particular hardship, and often presents as a bereavement concern.

Prison social workers can play an important part in the screening and selection of prospective inmate volunteers. In some cases, social workers fulfill instrumental training and/or supervision functions. Prison hospices employ stringent guidelines in the selection of inmate volunteers, including having records free of disciplinary action for one or more years, committal offenses unrelated to substance abuse, and lower security classifications. All inmates are assigned to a security classification based in part on committal offense, history of prior offenses, past behavior while incarcerated or on parole, gang affiliation, current cooperation with the institution, and participation in activities, work assignments, classes, groups, etc., often referred to as programming.

Given the troubled backgrounds of most inmates and the requirements of survival while incarcerated, vulnerability and compassion are not highly valued in prison; in fact, quite the opposite. Social workers can help inmate volunteers develop communication skills, tolerance for alternative viewpoints and ideologies, coping strategies for identifying and dealing constructively with strong emotions, problem-solving abilities, and engage in self-reflection, and contemplate their own mortality. Social workers' respect for the dignity and worth of every individual enables us to guide inmate volunteers to an appreciation of their efforts. Dying inmates often remark that the peer volunteers understand them and can connect in ways no free staff or volunteers can.

Inmate volunteers in hospice programs anecdotally report experiencing a redemptive aspect to this work (Barnard, 1999; Head, 2005), leading one Angola (Louisiana) Prison hospice volunteer to say “I did a lot of wrong and hurt a lot of people out there. When I heard about hospice, it was in my heart to join because this would be my way of giving back to society” (Project on Death in America, 1998).

Symptom Control

Primary responsibility for pain management and symptom control rests with the doctors and nurses that staff prison hospices and long-term care facilities. In addition to guidelines mentioned previously, practical advice and the voice of experience are important in adequately addressing pain and other symptoms (Bick, 2002; Lin & Mathew, 2005) Many inmates have a history of substance abuse, either through their own use or as a consequence of others' addiction. In this, several issues arise. While the governing pain management principle is that “pain is what the patient says it is,” in the corrections setting this is tempered by circumstance.

There are a number of ways issues of pain management could come to the attention of a social worker. Inmate volunteers may believe a patient's pain is being undertreated, yet they are in a particularly powerless position to effect change, and raising the issue directly could have adverse implications for them. Teaching volunteers to report the behaviors they see that are consistent with pain may help inmate volunteers feel less impotent. An example would be “every time I help the patient to the bedside commode, they make a face and groan.” Inmate volunteers will also be empowered by training in non-pharmacologic interventions for pain, particularly the many forms of distraction available to them during their time with dying inmates, including reading, playing games, watching television or movies, praying, controlled breathing and relaxation exercises.

Another issue is that sometimes people in recovery are unwilling to use narcotic pain relievers for fear of rekindling their addiction, or out of a belief that doing so would break their record of sobriety. Others may refuse pain medication as a matter of faith or out of conviction that clarity at the moment of death promotes safe passage, a higher state of being, or reincarnation. Christian inmates sometimes identify with Christ's suffering on the cross, and believe they are called to endure similar suffering. Some may believe that their pain is deserved, brought on by the transgressions that brought them to prison in the first place. Volunteers from different traditions may find accepting these beliefs and their consequences very difficult; indeed, other medical staff may find this choice equally hard to accept and support. Social workers are practiced at tolerance for diversity and managing one's own anxiety, and can help frame this choice as honoring the individual's dignity and autonomy.

Sometimes individuals with substance abuse histories are attempting to “game the system” to get a “buzz” from narcotic pain killers or because these medications are very valuable contraband in prison. Social workers have skills to help care teams discern the meaning and intent of medication requests in the palliative prison setting. It is worth noting that social workers are not immune to reacting out of our own prior or current experiences with substance abuse in our life or that of someone close to us. We may feel judgmental toward perceived “drug-seeking” behavior by a patient. We can feel any of the same prejudices and presumptions as our professional counterparts. In such circumstances, self-awareness and supervision are essential.

Family Relationships

Inmates often have two families: their biological family and their inmate family. Relations with biological families run the gamut from close and supportive to irreparably damaged or permanently severed. Remembering how many inmates cycle through the system in any given year, the image of a man or woman completely isolated from or abandoned by relatives is more the exception than the rule. There may be deep rifts or unresolved issues between inmates and their spouses, partners, parents, children, and siblings, but more often than not there is some relationship and some contact. While it is primarily an older population that needs palliative care, the 10-year disadvantage in inmate health-years, and the high prevalence of HIV and hepatitis means many dying inmates have living parents and minor or young adult children.

Much of the evidence suggests that incarceration adversely affects employment opportunity, educational attainment, marital stability, school performance for inmates' children, and mental and physical health for inmates and their families both during confinement and long after imprisonment ends (Arditti, Lambert-Shute, & Joest, 2003; Clear, 2005; King, 1993; La Vigne, Naser, Brooks, & Castro, 2005; London & Myers, 2006; Massoglia, 2008).

Social workers have key roles to play inside and outside of the institution. Instrumentally, facilitating continuity of care through rapid access upon release to Medicaid and Medicare is essential, whether the inmate is coming home to die or attempting to reintegrate into free society. Financial support through SSI, welfare, food stamps, and Social Security Disability (when applicable) help provide essential support for newly released prisoners and their families.

When death is looming, helping families arrange for transportation and housing in order to visit during the inmates final days and hours draws upon social work's trademark ingenuity and resourcefulness. Bear in mind that centralized palliative services often mean dying inmates are located tens or hundreds of miles from their families, and that the financial limitations of lower SES at the outset are usually compounded for families during an individual's incarceration. In the closing days of an inmate's life, social workers can find powerful allies in the chaplains, rabbis, imams, and other spiritual leaders who serve prisoners and the communities where prisons are located. A social worker's efforts at familial healing and the chaplain's focus on spiritual reconciliation go nicely hand-in-hand.

As the dying process unfolds, prison social workers are well advised to also attend to the inmate family. For prisoners whose biological families are estranged, or dead as is the case for more elderly inmates, prison family takes on added significance. To survive in the prison environment, most inmates have developed ties to some of their inmate peers. These bonds include everything from proximity to camaraderie, from affiliation to affection to intimate partnership. For many inmate volunteers, the individuals they are matched with become family. Addressing the bereavement needs of inmate family, including volunteers, is a key element of comprehensive care, and social workers are well-suited to this task.

Advance Directives, Resuscitation Status, and DNR Orders

The complex history of inmate health care and the troubled, often adversarial, relations between inmates and correctional staff are compounded by most inmates' experience of the health-care system prior to incarceration. The legacy of Tuskegee (Freimuth et al., 2001; Jones, 1993; Roy, 1995) is deep suspicion of the medical community's ethics and trustworthiness in the African–American community. The health-care experiences of people of lower SES, which includes many communities of color—has done little to disabuse anyone of these suspicions. Three decades of pain literature confirm that communities of color, women, and the elderly routinely experience undertreatment of pain (Anderson et al., 2000; Bonham, 2001; Cleeland et al., 1994; J. McNeill, Sherwood, & Starck, 2004; J. A. McNeill, Sherwood, Starck, & Nieto, 2001; Todd, Samaroo, & Hoffman, 1993). Doubts about health providers' beneficence can play themselves out in the free community (Linder, 2004); not surprisingly they are omnipresent among the incarcerated.

The issue of resuscitation status can be particularly problematic in correctional settings. So much of the litigation has turned on issues of deliberate indifference that prison health systems are primed to provide aggressive care to patients “in extremis,” whether those interventions are desirable and indicated or not. Resuscitation has value in the prison setting beyond the individual patient on whom it is performed (Anno, 2004). In the presence of suspicion, it is a very public display of the use of any and all means to preserve and prolong life. This can be a conundrum for prison hospice programs. Most do not require inmates to have a do not resuscitate (DNR) order, though most allow both advance directives (71%) and DNR orders (86%) (Anno et al., 2004). For inmates as for many hospice patients in the free setting, agreeing to a DNR order is a process that unfolds over the course of disease progression and is an acknowledgement of approaching death.

One consideration for those helping patients make such decisions is the question of inmate literacy. Both limited health literacy and overall literacy can impede inmates' ability to contemplate alternatives and express preferences. Innovative approaches (Enders, 2004b; Enders, Paterniti, & Meyers, 2005) can help overcome the barrier of limited literacy. At a recent inmate volunteer training in California, the “Go Wish Values Sort Cards” (CodaAlliance, n.d.; Steinhauser et al., 2000) were also met with enthusiasm and seemed to present few literacy barriers. Using a deck of 36 cards, each with a single value statement on it like “To be free from pain” or “To have my family prepared for my death,” each participant sorts and prioritizes, finally arriving at the 10 value statements most important to them. This can then be shared with a partner, discussed with one's doctor, or used to inform choices for an advance directive.

Inter-Disciplinary Palliative Care

Overcoming barriers like literacy and a legacy of mistrust is aided in prison by inter-disciplinary teams that function cohesively to bring comprehensive, culturally attuned, and to the greatest extent possible patient-driven comfort care. The inter-disciplinary hospice team model stands in sharp contrast to the more hierarchic and rigid systems that typify most aspects of the prison environment. Social workers are integral members of the team who serve valuable functions in developing and maintaining team cohesion, identifying and countering efforts to split the team, working on behalf of inmates to facilitate family visits and, when possible, a smooth transition to a community setting. When inmates observe a cohesive team dedicated to relieving their suffering and providing optimal quality of life given the confines of a prison environment, it fosters bonds of trust and mutual respect.

Medical Parole or Compassionate Release

At first, granting compassionate release to terminally ill inmates seems like a win–win scenario. If this happens, inmates will not die behind the walls, separated from family, and prisons are relieved of these very sick detainees who are a significant drain on medical personnel and resources. In addition, institutions have less need for specialized services and facilities that are difficult to create and maintain in aging physical plants and do not have to manage staff who cannot reconcile the compassion of palliative care with their population of miscreants.

However, the first mission of any department of corrections is maintenance of public safety and preservation of the separation between inmates and free society. Prisons are very sensitive to the public they serve and are most reluctant to take any action that risks public failure in their prime directive. Prisons are highly risk averse and medical parole procedures reflect this.

Although 43 of the 49 jurisdictions surveyed in 2001 (Anno et al., 2004) offered some mechanism to release the terminally ill from their confinement, the specifics of these programs illustrates this aversion to risk. In many jurisdictions, efforts to secure an inmate's release under these processes cannot begin until the patient no longer represents any threat to society. Most often this means that the individual must be bedbound.

Though the process varies from jurisdiction to jurisdiction, all involve multiple steps, with the pending approval of a release working its way up an internal or external chain of command. In most jurisdictions, either a parole board or an elected representative (usually a state governor) has final say over granting or denying a request for compassionate release. Frequently, political posturing takes precedence over compassion. Inmates and their families are not the most vocal or powerful of constituencies. Again, the advocacy skills of the social work profession can be put to good use.

The request always originates at the local level from the medical team. It works it way through the custody chain of command. Wardens must approve the request and move it forward in almost all instances. Rarely, the warden makes the final decision. Keeping in mind that the process does not start until the patient is debilitated sufficiently to represent virtually no threat to society, and that institutional processes are governed first by the laws of inertia, many inmates die before the request makes it all the way through the process.

Additional impediments include the scarcity of placements for individuals being released under these circumstances. After release, the inmate's health care is no longer supported by their department of corrections, and applications for Medicaid and Medicare take time, even after eligibility is confirmed. Most residential providers require payment for room and board in advance if Medicaid is not already in place, and many will not consider accepting a medically paroled ex-convict for fear of offending neighbors or risking a “NIMBY” (not in my back yard) reaction. If families are unavailable or unwilling to provide care, and residential placement is not an option, prisons can not parole an individual to the street. It remains to be seen whether the financial hardships many departments of corrections find themselves in will shift the balance at all in favor of overcoming these barriers and increasing the use of compassionate release.

CONCLUSION

Dying is a complex phenomenon, involving a tapestry of relationships and potentially causing distress that may be existential, interpersonal, intrapsychic, spiritual, and instrumental. Dying as a prisoner or medically paroled ex-convict adds several layers of complexity. No profession is better suited to working in this tangle of relationships and institutions than social work (Dawes, 2009; Dawes & Dawes, 2004; Enders, 2004a). Social workers possess a worldview that takes into account the broad scope of an individual in their unique context and circumstances. We are problem solvers. We are skillful at navigating complicated institutions and at helping our clients avail themselves of needed instrumental resources. We are team players, happy to build partnerships yet fearless in speaking truth to power. We collaborate, cajole, convert, conscript, confront, and find common ground. Nowhere are all these skills more useful than in end-of-life care for the incarcerated.

This article has provided data and details intended to give the individual clinician a working knowledge of health-care delivery in the correctional setting and an understanding of key concerns, some unique to the inmate environment and some ubiquitious to the dying everywhere: symptom management and pain control, family relationships, decision making about how much care and what kind of care is desirable, preparing to die, dealing with one's past, helping inmates help one another at life's end, allowing for the possibility of redemption or rehabilitation, helping teams deliver compassionate care while functioning in healthy ways, delivering care to people of many beliefs and faith traditions, some repentant and some not, acknowledging the influences of socio-economic status, race, ethnicity, and culture on coming to live and die in prison.

Ideally, enough information and references are provided to allow individual social workers—particularly those engaged in palliative care, end-of-life work, or correctional social work—to identify areas of interest and embark on more in-depth inquiry. Hopefully, this has strengthened the sense that there are global aspects of the dying process that cross most dividing lines and helped erode a sense of “them” and “us” in thinking about palliative care for the incarcerated. Everyone, regardless of setting and personal history, deserves to be treated with dignity and respect, aided in being made comfortable by competent caregivers. As social workers, we are by training and temperament well-suited to take a leading role in delivering just that kind of care.

Mr. Linder and Dr. Meyers provide training to inmate volunteers and staff under a contract between the California Department of Corrections and Rehabilitation and the Regents of the University of California. This work is performed at the California Medical Facility, Vacaville. These duties are performed in the course of the authors' overall job responsibilities and neither receives compensation beyond regular salary and benefits for actual time spent preparing and delivering training.

Mr. Linder is supported in part by grant DSW-06-218-010SW from the American Cancer Society, a Doctoral training grant in oncology social work.

Dr. Meyers and Mr. Linder are supported in part by grant PEP-07-214-01-PEP2 from the American Cancer Society, though the subject of this grant is not directly related to the data presented in this article.

Notes

Note. ¹White and Black categories include an unreported percentage of individuals of Hispanic ethnicity, though the recalibration in 1990 suggests that most Hispanics were included as White in the 1980 data.

²These categories are not reported separately in the USDOJ-BJS annual reports on prisoners.

³Only reported as percentages (in the Prisoners in 2000 narrative), based on inmates with sentences of more than 1 year.

⁴These columns do not add up to 100%. When they sum to >100% (4a), individuals are reported in more than one category. When the percentages and raw numbers sum to <100% (4b), other categories are not reported here.

Note. ¹Based on the USDOJ Prisoners in 2007 report, substantially revised from the Prisoners in 2000 report.

²The “Hispanic” category was not reported in this year, nor is it clear whether Hispanics are included in the Black and White prisoners reported.

³Taken from the Prisoners in 1994 report.

⁴Taken from the Prisoners in 1997 report; Hispanic category only reported in aggregate, not by gender. For reference, in the same report, the “Black” aggregated number was 1,067 and the “White” aggregated number was 139.

Note. ¹“Parole violators include prisoners with revoked parole, other conditional release violators, and intermediate sanctions imposed upon parolees in lieu of revoking parole” (p. 3).