My brother is dead.[i] He died last Thursday. As you read this, I am in Cleveland to attend to the committal of his ashes.
Despite being closely monitored by the Cleveland Clinic for the recurrence of a cancer that he had beaten against all odds, a different cancer silently struck. Sarcomatoid renal cell carcinoma (RCC) is an aggressive form of RCC and is associated with an awful prognosis. That’s what hit my brother literally out of the blue.
His spine, hips and other distant structures were riddled with metastases. Even though he denied it, his pain was off the charts. In the last month, he could not walk for fear his pelvis would shatter. He was dead in a little less than three months after the diagnosis.
I saw my brother about a week before he died. He was at the Ames Family Hospice House. That place, its doctors, nurses, staff and volunteers, are all a marvel. Even though my brother, a former locomotive engineer and local union chairman, would sometimes demand the nurses allow him to put on his pants so he could go to work, he was afforded maximum cognitive clarity while still achieving relief from his extreme pain.
He was even able to attend an early birthday party so that friends and family could see and talk with him together one more time before the fast approaching coma would render him senseless. As he entered the birthday gathering on his hospital bed turned chariot, my brother signaled with his right hand and arm as if he were pulling the lever to blow the deafening horns on one of the locomotives he had operated, pulling mile long trains filled with coal.[ii]
My brother did not die a good death, but it was not a horrible one either. After reading what I just wrote, and remembering the title, you can see where this is going.
When a federal judge sentences someone to a long sentence, sometimes literally life plus cancer, the judge receives a letter from the Bureau of Prisons when the inmate dies. It is on official stationery but cheap paper. It recites the fact of the prisoner’s death. A case number is provided. The offender’s prison number is given. There is a cursory explanation of the cause of death.
Even in death, the federal judiciary must count beans. Of course, I file the letter in the court file for all to read. But, I have not the slightest reason to think that anyone reads the death notice. To be perfectly candid, in the past, I merely glanced at these letters and gave little or no thought to them. The system grinds on. As a dutiful cog in a huge machine, it is my job to ensure that the machine never slows down.
So it was this past weekend, as I thought of my brother, that I wondered about hospice care in prisons. I had never given such a question any attention. Should I be ashamed? I leave that up to you.
However, I do recommend reading Ann Neumann, What Dying Looks Like in America’s Prisons, The Atlantic (Feb. 16, 2016). There is a lot packed into that article,[iii] but I want to concentrate on two aspects. They are (1) the remarkable medical people who work at prison hospices and (2) the opportunity for healthy inmates to do something positive and perhaps life changing. Yet, there is a nagging and uncomfortable point that the author addresses. I will too, if only to repeat her words and punctuate it with a photo.
Neumann writes about her visit to Rome, New York, and the prison hospice program at the Mohawk Correctional Facility. She saw much good:
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.[iv] 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 author of the Atlantic piece, Ann Neumann, ends with admirable realism. Even given her experience as a hospice volunteer on the outside, Neumann came to understand the profound difference between hospice care for you and me and that provided to confined prisoners.
She wrote about the thoughts that many of us might consider if we allowed ourselves to seriously think about confined prisoners and hospice care:
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.
Perhaps the following photo, with the appended background information, illustrates the stark point that Ann Neumann forces us to contemplate. Compassion in the form of prison hospice care is, indeed, a complicated thing.
This foregoing is a photo of a convicted murderer in a California prison hospital. The 40-year-old prisoner was slow moving and hardly able to talk when he was interviewed by News 21. He said it hurt to move. Severe arthritis and AIDS wracked his body.
There is nothing more to say.
Richard G. Kopf
Senior United States District Judge (Nebraska)
[i] Do me a personal favor. Don’t express your condolences.
[ii] My brother’s son (my nephew), a locomotive engineer as well, convinced the nurses to push the hospital bed down the hallway at breakneck speed so that my brother could make a grand entrance into the room where we were all assembled. My brother displayed the sly grin for which he was known. I don’t know what the medical staff had done with his medications, but my brother was able to converse with everyone and make the wickedly funny jokes that even made railroad management (a dour bunch) laugh.
[iii] The author does a good job of explaining the problematic nature of providing hospice care to prisoners who don’t trust prison staff. Consider, for example, the author’s notation that some prison hospice programs require a “Do not resuscitate” (DNR) directive signed by the prisoner as a condition of admittance. And then there is the ever present problem of inmates, sick and well, and potent pain killers. Indeed, the whole idea of prison hospice programs raises the question of whether dying prisoners shouldn’t simply be released and then dumped on free world social service agencies. But, let me provide an example of the danger of doing so: I had an offender who was dying and who was released by the BOP only to secrete meth in the library of the small but nice nursing home the welfare people found for him. After that, the nursing home didn’t want him anymore. Go figure! At my direction, and with her agreement, he was ordered to live with his mother who was closer to 90 than 80.
[iv] “The nurse called the patients [in the hospice wing] “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 . . . .”