– here’s how they face the end of their lives

An inmate inside the nursing unit at Louisiana State Penitentiary.

Outbreaks of coronavirus have hit prison populations particularly hard – but for many inmates in the U.S., illness and the prospect of dying behind bars already existed.

Advocacy groups have flagged concerns about disease transmission, lack of medical care and deaths in custody as a result of COVID-19. But deaths in custody are not a new phenomena and the process of dying with dignity while incarcerated is complicated.

I have spent a significant amount of time examining correctional health care practices and believe the process of dying in prison is one in which human dignity can be lost.

Prisoners grow old faster and become sick earlier. By 2030 some experts believe that one in three prisoners will be over the age of 55, increasing the likely population of prisoners diagnosed with conditions such as cancer, heart disease, liver and kidney disease, high blood pressure and diabetes.

A recent Bureau of Justice Statistics report revealed a startling increase in state prisoner mortality. Between 2006 and 2016, the last year for which the study provided data, there were more than 53,000 deaths in custody. More than half of the 3,739 deaths in custody in 2016 resulted from just two illnesses – cancer (30%) and heart disease (28%).

The proportion of prisoners requiring end-of-life care is twice as high as the general population.

An inmate with cancer in Colorado Territorial Correctional Facility’s hospice program.

Outside prison walls, a diagnosis of a terminal illness often means gathering friends and family to repair and restore relationships and thinking about end-of-life options. The coronavirus has, of course, affected who can be present in someone’s last moments, but the terminally ill still have options over their medical care, pain management, who to tell and how, and getting affairs in order. For prisoners, such choices are constrained by state regulation. Prisons are not well-equipped to provide human dignity at the end of life. Terminally ill prisoners have two options: compassionate release or end-of-life care behind bars.

Showing compassion

Offering early release or parole to prisoners diagnosed with debilitating, serious and often terminal illnesses is considered compassionate release. Many in the medical profession consider compassionate release a constitutionally protected right as incarceration of prisoners with debilitating illness undermines medical care and human dignity. Others see compassionate release as a way to reduce correctional health care costs for a population posing little risk to the public. Iowa is the only state without a compassionate release law.

The process of qualifying for compassionate release is complex and statistics on how many succeed are hard to obtain, although we know the numbers are small. Prisoners’ medical conditions, age and time served determine eligibility. But exclusion criteria are extensive. For example, prisoners committing the most serious crimes are excluded. Most states allow stakeholders such as victims, police and court professionals an opportunity to say no.

For the terminally ill, release is often dependent on one’s “death clock” – how many months a medical professional certifies that you likely have before dying. In some states like Kansas and Louisiana, death must be imminent – within 30 to 60 days. In others like Massachusetts and Rhode Island, prisoners with as long as 18 months to live may be released. Applying for compassionate release can be daunting for someone with only months to live. Sadly, some die before they can complete the process.

Even if an inmate does get out, their family may be ill-equipped to deal with the challenges of caring for a dying loved one. In these cases, release may result in transition from one restrictive, isolated, institutional setting to another with care provided by unfamiliar medical professionals.

End-of-life sentence

States must provide medical care to prisoners even though they are being punished for a crime. But the quality of such care is often inadequate. The prisoner does not get to select medical options; care is determined by the state. Death could mean dying alone in a prison cell, in an infirmary with only periodic check-ins from a nurse and prison volunteers or in a hospice unit managed by the state.

Pain management may be restricted by correctional policy and by staff who are reluctant to administer narcotics, such as morphine, to ease suffering out of concern that it could be sold or used illicitly. A recent report in the American Society of Clinical Oncology Post discussed how inadequate care caused unnecessary pain and suffering in prison and concluded: “No one in a wealthy and socially advanced country like the United States should suffer from untreated pain, especially at the end of life.”

While families are allowed to visit terminally ill prisoners, notification of the illness rests with the prisoner – a daunting task if the prisoner has lost touch with relatives over years incarcerated. State prisoners are often confined far from home, so even family members who would like to visit may be hampered by distance and cost. Another challenge for families is the bureaucratic process of prison admission. It is correctional staff at the gates rather than medical professionals determining who gets to visit on any given day.

Access to a mainstream faith leaders and last rites are provided when available. But it is not uncommon to find spiritual practices for the dying prisoner carried out by fellow prisoners.

For terminally ill prisoners “getting one’s affairs in order” includes trying to identify someone in the community willing to take responsibility for their body after death and ownership of personal effects gathered during incarceration. Even if the prisoner identifies a relative willing to take responsibility, there are no guarantees. A relative may be disqualified from handling prisoner affairs. In Ohio, for example, if the prisoner’s loved one is unable to accept the body within two days after notification, the relative may be disqualified.

If no one comes forward, then the prisoner will be buried in an indigent grave and prison officials will dispose of the prisoner’s belongings and monies remaining on prisoner accounts.

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In many places, inmates who want to go into hospice care have to sign a do-not-resuscitate order first.

By ANN NEUMANN

Members of the media walk down the corridor inside the Adjustment Center during a media tour of California's Death Row at San Quentin State Prison in San Quentin, California December 29, 2015. America's most populous state, which has not carried out an execution in a decade, begins 2016 at a pivotal juncture, as legal developments hasten the march toward resuming executions, while opponents seek to end the death penalty at the ballot box. — Members of the media walk down the corridor inside the Adjustment Center during a media tour of California’s Death Row at San Quentin State Prison in San Quentin, California December 29, 2015. America’s most populous state, which has not carried out an execution in a decade, begins 2016 at a pivotal juncture, as legal developments hasten the march toward resuming executions, while opponents seek to end the death penalty at the ballot box.

I drove the four and a half hours to Rome, New York, the night before I was scheduled to visit the prison hospice program at Mohawk. The desk clerk at the Quality Inn gave me directions the next morning. “You can’t miss it,” she said in a raspy voice. Mohawk had once been a residential home for the developmentally disabled. It occupied the southernmost corner of the 150-acre Mohawk-Oneida campus and was converted to a medium-security prison in 1988. Today, it houses about 1,400 inmates, 112 of whom are inside the “skilled nursing facility,” Walsh Regional Medical Unit, which takes in prisoners from the central and western parts of New York State.What the hospice program at Mohawk did was prevent patients from dying alone. Terminal patients, particularly those dying inside prison, need human contact, companionship, and a chance to talk about their lives, the nurses told me. The program also provided healthy prisoners who had good behavior records the chance to train as volunteers, to give back to their fellow inmates. The program provided a real “sense of satisfaction to our guys,” according to the daytime hospice nurse. “They’re proud of what they’re doing. They’re putting someone ahead of themselves. They’ve put themselves first until now.” Volunteer training took place once a year (and lasted one week), but applications came in throughout the year.

The nurse called the patients in Walsh “my patients” with a kind of endearment that expressed her commitment to them and the program. Among them, 11 were dying of AIDS and seven had major illnesses, like cancer. Special accommodations were made for dying patients—like private rooms with TVs and radios and special meals—but the staff was prepared for the “traps” that such accommodations could bring: trading morphine for cigarettes, being alone with female staff. The program, I was told, accepted patients with six months or less to live, although some live longer. “They have the chance to get involved with their own feelings,” one of the nurses said.Because of my time spent as a hospice volunteer, the tone these staff members used caught my attention. They were proud of the jobs they were doing; they felt they were contributing to the betterment of society. They found their work rewarding and fulfilling. I was in awe of them even as I balked at the paternalistic role they played in helping these prisoners—caged, monitored, “employed,” removed from the world—to “give back.” The concept of rehabilitation may haunt any conversation about incarceration, but the extent to which anyone believes in it gets lost in the practices of policing, sentencing, and incarcerating. It’s easy to suspect that this is in part because of the power dynamic involved. Prisoners are subjected to a particular role inside, one that punishes them for any kind of deviation. They are constantly subject to an unbending authority. When prisoners go into hospice, either as patients or as volunteers, the rhetoric that surrounds their roles is constantly infused with ideas of reform.

Walsh, it seemed, was replicating the hospice model, now decades old, inside its walls. And the old hospice directive—that patients should be helped to think reflectively and reckon with how they’ve lived their lives—fits surprisingly well in prison. It dovetails with the belief that men were incarcerated because they had not taken responsibility for themselves, because they did not understand compassion, did not follow the rules, and did not make themselves productive and useful members of society. Hospice is a way for them to find forgiveness for their sins and to make peace with their world and themselves.

Since prisons were established in the United States, there have always been prisoners dying inside, but the recent rise in the age of the prison population and the need for prison administrators to find ways to care for the elderly, sick, and dying provided them with a new opportunity for rehabilitation: care for the dying. What better way to help a prisoner face his sins than turn his face toward death?There are 2.3 million adults in jail or prison in the United States. That’s the largest number of incarcerated people in the world. Between 1995 and 2010, the number of prisoners over 55 quadrupled. By 2030, they will account for an estimated one-third of all incarcerated people, according to a 2014 report, The High Cost of Low Risk: The Crisis of America’s Aging Prison Population, by the Osborne Association, a prison advocacy group based in New York. Behind prison walls, where every social malady is compounded, is the perfect place from which to consider the future of health-care access and end-of-life care in the United States.

According to the National Hospice and Palliative Care Organization’s 2012 report, End of Life Care in Corrections, there were more than 75 hospice programs in U.S. prisons in 2012. Fifty percent of them rely on inmates as volunteers. A 2011 paper by Katie Stone, Irena Papadopoulos, and Daniel Kelly in Palliative Medicine suggests that the benefit for inmate volunteers is that “they are able to offer patients a level of empathy that cannot be achieved by free people regardless of intention or training.” Inmate volunteers know what it’s like to be a prisoner and can better share experiences and understanding with incarcerated hospice patients. The paper suggests that volunteers “gain valuable psychological rehabilitation” through a “renewed sense of responsibility and care.”

But such programs, according to the study, have two primary challenges: pain and trust. Pain management in a facility where drug use is rampant—and, indeed, a major cause of incarceration—is problematic. Doctors and nurses can find it hard to believe a patient who tells them he’s in pain. “A culture of suspicion emerged concerning the illicit drug trafficking of narcotics intended for pain relief,” the Palliative Medicine report states. The “macho” prison culture also prevented many in pain from admitting what they felt. But a larger issue, one difficult to measure, exists: “Prison healthcare staff may believe that prisoners deserve their suffering.” In other words, pain is punishment. Staff members tend to default on the side of pain over more medication when prescribing narcotics to hospice patients. In church parlance and even in broader society, the belief that pain makes us better people is commonplace. In prison, suffering is part of the centuries-old plan.It’s also hard for prisoners to believe that staff members have their best interests in mind. Can you trust doctors who work for a system that controls every aspect of your life? A system that was established to punish, subjugate, discipline, restrain, subdue? Decisions to limit care (or not pursue every option) can make prisoners even more distrustful of their caregivers. Couple that with the requirement that, in 55 percent of prisons, patients must sign DNR orders before they can enter hospice, and a climate of deprivation, ill will, and doubt about the facility’s objectives can grow. Patient safety is tempered with a paternal “we know what’s good for you” attitude; prisoners who feel their lives are less valued think the system doesn’t care about them or is invested in getting rid of them. Yet sending prisoners to external hospices, as is done in the United Kingdom, or releasing those who are too ill to violate laws, is also a problem. The saddest sentence of the Palliative Medicine report is: “For some, the prison and its inhabitants are all that is familiar due to institutionalization.”

“The challenge is that we can’t lose compassion or cross a line,” a nurse told me, her tone warm and professional.It’s just one of the many health challenges unique to prison populations. Prisoners age faster than those of us outside. “Incarceration not only compounds existing health issues and heightens the risk of further health problems,” states the Osborne Association’s 2014 paper, “but—most alarmingly—has a deteriorating effect on the bodies of incarcerated people.” Incarceration may slow down a prisoner’s perception of time, but it accelerates his body’s. Incarceration takes more years out of a life than just those required by a sentence. Lack of proper mental and physical health care and abnormally high levels of stress and anxiety can make fifty-year-old prisoners’ bodies seem 10 to 15 years older. Of prisoners over 50, 40, to 60 percent have mental-health challenges.

Prisons weren’t designed for elders, either. They require that prisoners climb into bunks and haul themselves up stairs or across long distances. Meals must be eaten in 12 minutes. Daily routines are strictly timed and regimented; one error—due to dementia, disorientation, physical inability, or pain—and punishment is delivered. The physical discipline of prison, meant to rehabilitate the weak, evil, or selfish mind of a criminal, is a questionable approach to reform, at best. For an elderly population, it looks like abuse. But renovating America’s prisons to meet the needs of an aging population isn’t in the budget. Dealing with the needs of prison elders will take a variety of approaches, none of which look easy.The costs of prison health care are, like the costs of public health care, rapidly increasing. The United States currently spends about $16 billion—more than the entire Department of Energy budget—on incarceration of prisoners over the age of fifty. While it costs about

$34,000 a year to keep an able-bodied prisoner locked up, elders can cost as much as twice that amount.

Compassion is a complicated thing. It’s an emotion, both abstract and concrete, shown both in our broad support for groups or issues and in the care that we give those around us. It’s easier to care for people when you trust them, but also when you know you have power over them. When you know they need you.Trust or safety, then, can alter our levels of compassion. I felt guilty for not having more compassion for Moore, a prisoner I met at Mohawk, who later wrote to me, and I didn’t know if it was because of him or because of where I met him. I didn’t want him to be in pain. I didn’t want him to be treated unfairly. But I didn’t want anything to do with him, either. That, I realized, was the line that prison medical staff people had to draw. They may use prison rules or state laws or medical ethics to draw the line. And those laws and rules may make their work easier for them. But it was an institutionalized way of grappling with very complicated emotions like trust and safety and even personal chemistry. Their work is made possible by an ethics, not to be confused with a universal set of moral principles. The ethics of the prison medical staff members was unique to their place of work, a prison. We can and will, as a society, argue about what the laws should be, about what our conscience should let us do.

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