Kopf: On Prison Hospice Care

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 Hos​pice 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.

Photo credit: Armand Emamdjomeh.

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 . . . .”

18 comments on “Kopf: On Prison Hospice Care

  1. wilbur

    The part about qualified prisoners volunteering to help their fellow prisoners in hospice care was a singular ray of positivity in a sky blackened by negativity.

    Thank you for writing this. It was thought-provoking.

  2. Skink

    Rich–you know what I do. It has taken me to just about every prison in my state. I have learned much about imprisonment.

    Most folks would be very surprised about prison culture. They believe prisons are filled with corruption and inmate-on-inmate violence. They also believe an inmate’s behavior and beliefs carry over from the outside to prison life. When I read comments to articles regarding defendants, especially child sex offenders, they invariably include some suggestion that when the defendant goes to prison, “Bubba” will get him.

    There is no “Bubba.” Prisoners are not in the least concerned about another inmate’s crimes. They mostly see each other as equals in a society uniquely theirs. For the most part, they have a high level of compassion for each other, even though they may have no regard for the rest of society. That compassion might be greater than “free” society has for each other. They’re an odd bunch to us, but long-term incarceration changes the way they view each other. For many, prison is their hometown. I can’t tell you how many letters I’ve received over the years that begin with some variation of “I guess you heard that I’m back home in prison.”

    I take exception with something Ms. Neumann wrote:

    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.

    That’s nonsense. I’ve defended thousands of medical professionals working in prisons and in the free world. I can count on one hand the number of times I’ve encountered this sentiment, and it’s usually directed to the access prisoners have to care, as most corrections agencies require a referral to a physician be carried out in 24 to 48 hours. That sentiment is understandable, as your HMO doesn’t have a similar rule.

    I used to marvel at the compassion and professionalism of these people. Their patients are “patients,” not inmates or prisoners. They care about these people, but they are also aware they are dealing with criminals. They must, as anything else can be very dangerous when dealing with some inmates. I no longer marvel because I’ve come to understand that it takes a unique professional to work in these horrible places. To a certainty, I’ve encountered more compassionate medical professionals working in prisons and jails than I have in society. They are very different folks.

  3. Jeff Gamso

    There is a terrific documentary (Academy Award nominee for Best Documentary Short Subject, if you find that meaningful), “Prison Terminal: The Last Days of Private Jack Hall,” capturing his time in the Hospice at a maximum security prison, the Iowa State Penitentiary. I understand it’s now available on iTunes.

    And if Scott should decide to allow it, here’s a link to the review on my blog. http://gamso-forthedefense.blogspot.com/2016/01/severe-and-comfortless-and-beautiful.html

  4. David

    No condolences, but thoughts and prayers. Definitely thoughts and prayers.

    I will say thank you for writing this moving and thought-provoking article though.

  5. Solaric

    I had not previously seen that Atlantic article, and reading your post (and that article) struck me extra hard as just 3 days ago there was an article published about a controversy arising from a failure by the Pennsylvania’s State Correctional Institution-Camp Hill to offer any sort of medical care or hospice care to a prisoner dying of metastasizing cancer. [Ed. note: Deleted.] I hadn’t considered the wider patterns that might exist beyond that case, particularly given America’s complex relationship with hospice care and “death with dignity” and such even in general free society. No matter how horrendous the crime, we’re not supposed to deal in torture, and for good reason. The extent to which something seemingly a close equivalent is permitted through neglect is disquieting to think about, so I suppose many of us have a natural tendency to just *not* think about it unless pushed. Thank you for giving another push.

    1. B. McLeod

      One of the factors at work is probably the contracting/procurement process by which prison caregivers are selected. It is not really a consumer choice of or by the inmates. As government contracting tends to work, providers are probably given a set of limited service parameters and ask to provide the competitive rate they would propose to provide those services. When the responses are all in, the prisons likely select the lowest bid that actually covers the requested range of services. Whether a given inmate (or any of the inmates) would be satisfied with that service provider will probably not be taken into account at all. Within the last few weeks, I saw a story where a nurse working for a contract care provider at an Oklahoma prison reportedly decided a prisoner’s seizure-like symptoms might be due to demonic possession, and attempted an exorcism (the patient died the following day). I am guessing the inmate, if free to choose among service providers, would not have chosen that one. But there you have it. The choice is going to be between no services or the services provided by the contractors the prison has selected.

      1. Skink

        Depending on their custody level, prisoners can be treated by their own physician. Like anyone else, they have to pay the costs.

        Most medical professionals are not chosen by a contractor. Like I said, they are unusual folks–many work prisons for decades. They remain whether services are provided by the agency or a contractor.

        1. Fred

          I have read about facilities that allow inmates to see their own doctors at their own expense. They are vanishingly rare.
          More and more, the medical work is being outsourced to places like Corizon. Search on their litigation history.
          Searching all my memories of extensive reading and listening, I can think of only one case of responsive and adequate medical care in a correctional institution (state prison in WA). Good luck suing and trying to surmount the “deliberate indifference” standard.

          1. B. McLeod

            Until Skink’s comment, I had not realized there were any. From reading news accounts and litigation reports, I had the impression that contract care was the prevailing model at prisons generally. (The provider with the nurse/exorcist reportedly did let her go, but only after the correctional facility barred her from returning to their premises).

          2. Skink

            Lawsuits, schmalsuits. Inmates file cases, at a much higher rate than folks that don’t go to prison or jail. Lawsuit rates mean nothing.

  6. B. McLeod

    It is not surprising that hospice care in prisons would not be on a par with hospice care in the outside world. I have also heard bad things about the food in prisons, the accommodations in prisons, prison dress options, and the job opportunities in prisons. For these and other reasons, I have come to regard prisons as among the less desirable choices for primary residence. I think that most people will be happier overall if they can arrange their affairs so as to maintain their personal domiciles outside of prisons.

    1. Richard Kopf

      Tom H.,

      They were and they are.

      Funny and (mostly) true story.

      My brother was set up to run from Toledo to Pennsylvania through Cleveland and his son from Toledo to Cleveland. Dual tracks. This had never happened before–father and son locomotive engineers on different trains along side each other going the same direction. The dispatcher, knowing what fun would ensue, sent them both off together and bets were being taken up and down the line about who would hit Cleveland first. I am told the the speed recorders in both locomotives mysteriously failed at about the same time. (Wink)!) I think my brother got smoked by his son, but my nephew my brother’s son tells me that his air brakes had to be applied with a certain vigor. And a legend was born.

      Thank you for your kind words. All the best.

      Rich Kopf

  7. Ron Morgan

    Judge —

    Both of my grandparents died while in care of hospice. One, mercifully, faster than the other. I vividly recall having to almost talk my Grandmother into the program based on her lack of understanding of the goal of a hospice program. Both of my Grands were fortunate enough to have family that cared for them and resources to make sure that they wanted for nothing and were as comfortable as possible at the end of their lives.

    Your article is eye opening and makes me feel a bit ashamed. I am always uncomfortable when I think about how we warehouse those who violate our laws. I am even more distressed at how we treat those who are at the end of their lives. The intersection of these two groups is a moral and ethical challenge that I truly believe our society must address.

    On a slightly more uplifting note, after suffering from Stage IV lung cancer with brain metastases, Grandmother passed away last year right where she wanted to…in her bed, in her condo, on her schedule. Late. She survived for 4 years with an illness that was supposed to take her in 6-12 months. It is amazing what people do when they have willpower. And (in her case) quite a bit of spunk, not unlike, it seems, your brother had.

    Best,
    Ron

  8. Richard Kopf

    Ron,

    Thanks for your comment. Yes, I think “shame” is at least one of the proper reaction those of us on the outside should feel.

    By the way, and while I am not a religious person if there is a God grandmothers are a gift from him or her. If there is no such diety then they are a gift as well.

    All the best.

    RGK

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