No One Here Gets Out 5 by Carl Norman
It ’s hard to die with dignity when you ’re wearing a dirty diaper.
That was the first thought to cross my mind when I heard that Tony* had passed away earlier in the day while I slept. He had been my patient in the Palliative Care Program (PCP), my
—and his- Virgin vigil; the ﬁrst fellow prisoner I’d sat with as he lay dying.
But I was someplace else, sound asleep, when he took his last breath.
I had left his cell at South Wood State Prison’s Extended Care Unit (ECU) at around 8:15 that morning, after sitting double six—hour shifts because the volunteer tasked with relieving me at 2:00 AM never showed. The evidence of a vigil’s busyness greeted my return to my own cell: accumulated laundry, unanswered letters, and a cell in disarray. I could do little about it at the time though, as I had to be back in ECU in a few hours. So I did my best to straighten things up a bit, showered, then plopped into bed and submitted to the fatigue that greets a vigil’s sixth or seventh day. In the early afternoon, I was awakened by a friend (whose porter job included emptying ECU garbage), who said he’d heard Tony was gone.
In prison, even the dead are rumors.
The second thought to occur —the one that will never leave- was that I had failed Tony.
My role as a PCP volunteer, according to the manual, was to “provide comfort, support and companionship to the dying, while helping him to maintain his dignity and personal wishes to the end.” That’s a high ideal, and one that every palliative care Volunteer aspires to. Hospice work is never easy, no matter the setting. But as a prisoner, there is even more to the job. The men in the
PCP are not just dying, but dying in prison. They are prison inmates, just like we volunteers, with all of the guilt, fears, and apprehensions that that entails, except that they are also poignantly aware that their last breaths will occur as prison inmates, which is its own kind of fear; their fear, my" fear, and the fear of anyone who has ever done time. Nobody wants to die at all, true, but especially not in prison. I can empathize with their situation because mine is essentially the same, and I can appreciate the sacred import of being my allowed to sit in a cell with a dying man because their only other human contact is staff. That is why _I felt like a failure; without even knowing what I could have done differently, my mood was colored by the awareness that
Tony’s less-than-‘digniﬁed passing was at least partially my fault.
* Name has been changed
Survivor’s guilt: I should have done more.
The term “hospice” is derived from the Latin hospes, from which we also derive words like hospital andhost, among others. Historically, hospice suggested a process or spirit of compassion in providing relief from suffering and despair, not the facility or treatment locale associated with the word in more modern times. The hospice as a "dedicated facility seems to first appear in the 4”‘ century, where Greek-speaking Christians ran nosocomeia, or public infirmaries, which also served as way stations for travelers en route to or from the Holy Lands. Over the centuries, as Western medicine adopted an impersonal, high-tech treatment approach that insisted on keeping people alive at all costs, hospice services became rare outside of certain monastic orders. By the 20”‘ century, the pain and suffering of the terminally ill were often pointlessly prolonged -for sometimes years- as treatments and machines replaced failing bodily functions, while religions and courts wrestled with decisions as to, “when to pull the plug.”
The counter-cultural revolutions of the l960’s & 70’s opened the doors to new thinking in all social spheres, including end-of-life decisions, and in landmark cases courts slowly began to rule in favor of individual choice. More patient-focused care became available, and caregivers began concentrating on the quality of life and pain management of the dying, not simply the forced extension of life. Palliative Care signiﬁed a more encompassing continuum of care for the terminally ill and dying than the traditional hospice, so was suggested by a Canadian physician in the l970’s. Derived from the Latin word for pallium, or cloak, the term —and concept- has continued to spread.
Palliative care went to prison in 1987, when a paraplegic inmate at the Medical Facility for Federal Prisoners in Springﬁeld, Missouri, saw the suffering, loneliness, and despair of the many incarcerated men there who were dying of AIDS. In spite of his own handicap, this man initiated and gained approval for the first hospice model of palliative care in an American prison.
The “Springfield Model” as it came to be known, which allows specially trained inmates to provide palliative care for their peers, is now the gold standard for prisons worldwide, including in Bridgeton, New Jersey, where the PCP started at South Woods in 2002.
Although it has been years ago now, I clearly remem_ber the night I first met Tony. It had come as a surprise, on a drizzly evening about a week prior to his passing. PCP patients are brought in from throughout the state prison system (and contracted medical facilities) with no advance warning to any inmate, so a volunteer could be called for a vigil at any time of the day or night. To participate in the palliative care program, a patient must usually be terminally ill, must wish for further treatment to cease, and must sign a Do Not Resuscitate (DNR) order
(Volunteer inmates are only permitted to be with the patient because of the DNR; otherwise, medical personnel must constantly monitor the patient in order to revive them). After transfer to
South Woods, the patient will be admitted to the ECU and the dying process allowed to run its own course without high-tech equipment or life-prolonging medical strategies. Once Tony was settled into an ECU bed, the doctor gave whatever orders were necessary for pain management, treatment, and palliative care. My name was at the top of the PCP “call list” for that time slot, so my unit was called and I was told to report to ECU for vigil, starting a process of round-the- clock volunteer coverage for Tony that would continue until his death. When the call came in to my housing unit, I had just showered and dressed after a handball game in the gym, so was out the door within ﬁfteen minutes.
It was a long, rainy walk to ECU, the sky only half so pissy as most of the corrections officers encountered en route. The trek added to my preexisting trepidation at what lie ahead. I had seen people die before, of course, having both witnessed and caused such demise. Death was no stranger to me; sudden, violent death especially, and there was much mental baggage bouncing around upstairs to confirm both the moral and karmic consequences. This though, companioning a man through the dying process, was something different entirely.
Unique among any relationship I’d ever contemplated, prison hospice is about forming an emotional bond with someone knowing that there is no hope of anything but grief at the end of it.
I’d never done anything like that before, and was frightened. But I figured that the patient had never died before either, and that his was unquestionably the tougher of the two tasks. So I took a deep breath, shook the rain from my face, and quickened my steps to ECU.
When I arrived, I had to peel off my wet clothing as part of a strip-search, to appease a sadistic off1cer’s concern that I may be smuggling contraband to a dying man. It did allow me to wring my clothes out before putting them back on though, which is probably a blessing, and gave me a chance to take a few deep breathes and prepare myself for whatever lie ahead. Reaching the cell, Ikind of sidled in, quietly introduced myself to an unresponsive Tony, and explained my reason for being there. I had been in ECU earlier that day, with my long-term (not on vigil) palliative care patient, Bedo*. I had been visiting Bedo daily for about six months as he bounded in and out of stroke-related dementia, so ECU was not new to me, nor were the processes. But this part, the vigil, was new, and all I could think about was the death part. So yes, I crept in.
The cell was hot, bright, and smelly, with a dozen large, aggressive ﬂies swarming about.
Sticking. to my informal jailhouse PCP training as an immediate distraction, I gathered some cleaning supplies and tried to improve the atmosphere as much as possible. A quick assessment of Tony’s physical and mental condition found him seemingly asleep, but there was an occasional fit of agitated movement, the cause of which, if the smell were any indication, was a soiled diaper. An officer at the housing control desk was kind enough to turn off the overbearing
ﬂuorescent lights in the cell (the nightlights were bright enough to read under), which helped shoo the ﬂies. I also began pestering passing medical staff about the diaper situation, but found little promise in their responses. The cleaning kept me occupied for the better part of an hour, and at least the cell felt better for the effort. After putting away the cleaning supplies, washing myself up, and turning off the loud, grating squawk of the cell’s cheap TV, I was finally able to sit down beside Tony in the quiet, dimly—lit cell, listen to him breathe, and just be present. This is why I was here.
Of all the lessons one learns in Palliative Care, “meeting the patient where they are” is fundamental. It took a while for me to grasp this, because my natural inclination —~as a controlling male— is to try to fix things. But men like Tony are beyond fixing, and my feeble attempts to do so would only worsen an already bad situation. All that he really required was for me to be there; that he not be abandoned before he abandoned this life. Nobody actually knows what to say to the Boatman when it’s time to cross the Styx, and, after the trauma of birth, there is no lonelier or more frightening a journey. Until Tony reached that point, all he really needed was the reassurance of someone’s presence, and perhaps a hand to hold. Those, then, are what I gave him.
A middle-aged nurse arrived about an hour later, with a warm smile and a distractingly plump fanny. I was relieved that somebody ﬁnally showed up to check on Tony, though at about
5’5” and l10lbs., it seemed unlikely that she could maneuver amotionless, fully grown man through a diaper change by herself without it getting messy. This may have been my first full- time vigil for a man on the verge of dying, but, having been a PCP volunteer for months, I had
* Name has been changed regularly worked with aged or terminally ill prisoners, including Bedo. I was not squeamish, and didn’t mind being conscripted to assist in a man’s diaper change.
I should have thought that through a little better.
Suffering from liver failure related to a combination of cancer and hepatitis C, Tony’s body, particularly the groin and genitals, was covered in large, angry boils that constantly oozed a smelly, amber—orange puss and left a scar on the heart of anyone who’d seen them, which I now had. A brownish disinfectant of some kind had been half—assed wiped on his crotch, mainly on those few patches of skin where the diaper rash had not yet turned to boils. It was a nightmarish vision that is beyond my ability to describe. —Or my desire to do so.
A thin man of about 52 years, with a goatee and close-cropped salt—and-pepper hair, Tony looked to me like the long-term prisoner that he was; not too different from my own look, or that of a thousand other people I (and Tony) had undoubtedly done time with. And though his build was slight enough that the physical task of changing his diaper was little challenge for the nurse and I, the emotional toll of seeing his condition up close and personal made the change one of the toughest tasks I’ve ever undertaken, and one that I’ll never forget.
While palliative care in prison is a noble ideal, it is still in prison, so hardly conducive to a good death. We volunteers may commit ourselves to remaining there to hold a patient’s hand until the very last breath, but we are the only ones permitted to do so; our tears are not those of the patient’s loved ones, but merely evidence of our having done a good job of generating and
I assigning love to an individual for whom there was nobody else there to love. That means the dying are denied the interaction and compassion of their most significant personal relationships, which are essential in the process of letting go for the dying and grieving for the survivors. In life, our relationships, particularly with our loved ones, are the framework upon which we build our identity. In prison, access to loved ones is a trying process, even for healthy inmates, with multiple levels of restriction and oversight no matter the form of contact, and passive-aggressive denial techniques often added by individual officers or staff along the way. Because those dying in prison are inmates, they are forced to live, and die, according to the whims of indifferent medical staff and arrogant jail guards. Thismatters: as Tony lay dying, one particular officer would regularly walk past the cell and slam a large ring of keys against the door to make a loud, crashing sound. This startled everybody, and when the semi-conscious Tony jumped, the officer would say, “Yep. Still alive” and walk away. The inglorious death of Tony is indicative of the general indifference that any inmate will face in any prison, because he/she is an inmateiand because it is prison: compassion’s ﬂyover state. mum
On the days following my third and ﬁfth night with him, Tony had visitors. In addition to the overnight vigil, I was still reporting to ECU for an hour each afternoon to assist iBedo: cleaning his cell, listening to his stories, and helping him with letters home. The ECU social worker made a point of stopping by to let me know a day in advance each time a visit was expected for Tony, to ensure that he and his cell were prepared the night before. When I got to
Tony later that night, I would straighten everything as best as possible, explaining to Tony as I did so that somebody may be coming to see him. There was no noticeable change in his sleep to
A show that he’d heard me, of course, but because my “straightening” included a trim of his hair and nails or change of his t-shirt, I thought it best to let him know why.
The day three visit was a woman in a wheelchair (probably a sister), and a pair of teens, male and female. They spent a little more than an hour in Tony’s cell, which I noticed from across the hall where I was losing my shirt to Bedo, who always cheated —and won— at checkers.
I’d have liked to have talked to the visitors, even if just to reassure them that Tony was not nearly as alone as he looked lying there dying in a jail cell. But contact with a patient’s family is extremely forbidden (Tony’s PCP volunteer for that shift was sitting in the dayroom until the visit was over), and even looking at them with sympathy is believed punishable.
I was also in Bedo’s cell on the afternoon of Tony’s fifth day visit, reading last year’s birthday cards to Bedo for the tenth time (Dementia can renew joy: not realizing he’d heard it before, he roared with unrestrained laughter every time I read a particularly funny quote from his I daughter’s card). Tony’s visitor on this day passed by looking like his brother, albeit ‘younger.
Brother was wearing the clothes of a workingman after a long shift, and was in the cell for only twenty minutes. It was late in the afternoon, so it’s not clear if staff terminated the visit or
Brother just couldn’t stay longer. But that was it for visitors; roughly ninety minutes of familial contact over two days, with eternity waiting in the wings.
Later that night, I talked a little about it to Tony. He was too far away to give signiﬁcance to such earthly matters, I suppose, so ignored me. But he did seem to withdraw a little further after that last visit. His ﬁts of activity became less frequent, his breathing quickened, and I wondered if he hadn’t somehow said his goodbyes to his guests and started to move on. Honestly, he seemed at peace.
At least for that day.
In August 2019, New Jersey enacted the Medical Aid in Dying for the Terminally [[1 Act, which allows a terminally ill patient, with less than six months to live, to make a written request for medication that the patient may self—administer to end his or her own life. In spite of the implorings of the Social Services Department and Chaplaincy, the NJDOC will not allow its application to prisoners. Even if they had, it would not have applied to prisoners like Tony , because the Act has no provision for euthanasia through advance directive (living will) or proxy, and Tony was incapable of “writing to request” the life-ending medication, or self—administering it. He would still have died in the same way.
I New Jersey is also one of 39 states that have laws permitting medical release -or parole.
That would not have applied to Tony either, because many offenses, including most violent offenses, are not eligible. This is particularly problematic, because most of the men dying in prison are long-term inmates who’ve committed violent offenses, and because medical parole/release is only granted in exceptional circumstances. For we veteran volunteers in the PCP, it is a unicorn; a mythical thing rumored to exist but never ‘actually seen. Halfway through my fourth decade in prison, I recall only one instance where medical parole was granted. One.
There are a number of reasons for this, not the least of which is the fear that an inmate will be released on medical parole, then rebound from the illness and go on to commit new crimes. This is not exactly realistic, since medical parole is only available for those who are beyond recovery; it would take a miracle, indeed. Another reason is the revenge factor: some lawmakers consider it anathema for the parole board to usurp the authority of the courts or legislature by reducing a prison sentence that was lawfully imposed, regardless of the reason. If a person commits a crime, the thinking goes, then they must serve the full term for that offense, regardless of their physical or mental condition. Yet another reason is the theory that, because families and friends die off or move on during long incarcerations, there is no one in society left to care for these inmates if they are released on medical parole. So the thinking seems to be that, because they’ve been incarcerated until they are dying and unable to care for themselves, the state should continue to incarcerate them. Forever.
This is also our justification for not returning zoo animals to the wild once they’ve been domesticated.
On my ﬁnal night with Tony, I arrived to ﬁnd the cell a mess: flies all over the place, food trays on the table, the smell of crap in the air, and the damned television blaring sports. The
ECU porters, who clean and empty the trash, were obviously hanging out in the cell watching
TV, and neither they, nor the ECU ofﬁcers, cared that a man lay there dying. Tony repeatedly burst into ﬁts of moaning and obvious agitation, which hardly abated as I cleaned everything up and killed the television (Literally: I dunked it in the mop bucket, then put it back on the shelf with towels under it so nobody would notice the water dripping out). Just as Iiwas ﬁnishing up, a pair of nurses came in on their rounds, and sent me to the dayroom for a half hour while they changed Tony’s diaper and bedding. Three hours later, just after 1:00 AM, the same two returned, sent me back to the dayroom, and repeated the changing process. It felt like it was going to be a good night at that point. Feelings lie.
Tony’s ﬁts of agitation came less frequently after the change, and the air in the cell freshened some. But it didn’t last long: within an hour, the smell of soiled diaper ﬁlled the room, and Tony again grew agitated. Glancing under his sheet, I saw that his diaper was saturated with puss or some other indescribable stuff. Then when I placed a cool rag on his forehead, I discovered puss streaks streaming down his face to stain the pillow, it having seeped out of the corners of his eyes and mouth, apparently ﬁlling his body now. I wiped his face as best I could, and rubbed a lemon-ﬂavored swab inside his mouth to alleviate whatever ungodly taste the puss must have had. I then went to explain the situation to the nearest ofﬁcer, who vowed to call the nurses back ASAP. No nurses came.
For the rest of my double shift (more than six hours), nobody came to check on or change
Tony. I reported the situation to an ofﬁcer again, and to two different nursing assistants who I caught passing by. But nobody came. I sat and spoke softly to him, trying to explain the situation as best I could, and held his hand for a while, stalling until help arrived. But nobody came. I spent a half-hour with him in Powha, a meditative practice from Tibetan Buddhism that is believed to alleviate suffering. I don’t know if it did or not. But nobody came. Tony remained agitated, which is understandable considering the combination of open wounds and puss that covered his groin, and I didn’t know what to do. I felt powerless, and repeatedly listed in my head the risks and rewards of just changing the damned diaper myself. Such an act is against the rules, naturally, and, if caught, would cause my immediate termination from the program. I was willing to take that chance, if that were the only consequence. But unlike palliative care in society, in prison it is just another “inmate” program, and subject to termination for little or no reason at all. There are usually factions within every administration that resent programs like the
PCP, and jump at opportunities to get rid of them. So the mantra among PCP volunteer prisoners is always keep the program sacred; it is too important to jeopardize for any one prisoner.
On that day, however, it didn’t feel sacred at all; when I left him, the very last time I would see him in this life, Tony still hadn’t been changed. I don’t believe he ever was.
In spite of decades of prison experience prior to my time with Tony, he was my graphic introduction to the process —and inherent ﬂaws— of dying in prison. His story is also a tragic expression of the need for change in a system —and on a subject- that few people talk about.
America’s population in general is aging, and that includes its prison population. That, combined with the onerous and pointless mandatory minimum sentences spawned by the “tough on crime” political posturing of recent decades, has led directly to prisons which are full of aged, inﬁrm, and terminally ill prisoners years past being dangerous. Bad politics is the reason why so few are released on medical parole, and why the solution to this humanitarian crisis is also a political one; there is no denying the moral and financial burden that dying inmates represent to the State, or the obvious need for lawmakers to introduce a cost-effective and morally tenable alternative to the current policies and practices regarding inﬁrm and terminally ill prisoners. All that’s lacking is the political will to do so.
This should matter to all who read Tony’s story, because while the guilt of Tony’s undigniﬁed departure will remain with me for the rest of my life, I am no more than a surrogate for the social culpability of every person whose tax dollars engender these circumstances. And there are many Tonys still here, dying.
“No man is an island, entire of himself‘ every man is a piece of the continent, a part of the main... Any man ’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee. ”
John Donne, 1623
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