This American Life ... and death: Superb shows about hospice
A few months after Pattie Burnham started working as a hospice nurse, she forgot the name of the president of the United States.
That's normal, her boss told her.
This anecdote is from a “This American Life” radio segment — titled simply “Death” — that aired last weekend. One of the show's producers, Nancy Updike, went to the Kaplan Family Hospice House near Boston and turned her recorder on for several days. The result is moving and informative. “Moving” and “informative” also describe “Prison Terminal,” an Oscar-nominated short documentary about a hospice in a maximum security prison, which recently aired on HBO.
Both “Death” and “Prison Terminal” show the enormous value of hospice and honor the extraordinary work done by caregivers, but they have subtly different messages. I recommend checking out both: Individually, they are superb, but it was comparing them that really got me thinking.
The main character in “Death” is Burnham, a registered nurse who started out at a hospital then did a stint as a school nurse before going to Kaplan House, about five years ago. So, she was a veteran RN at the time she forgot the president's name, and her boss told her that this was normal — that her brain was blocking out a lot of what it was seeing every day, and it was blocking out some other information too.
I think I fixated on this detail because it illustrates the tremendous burden — psychological and emotional — that goes with being a hospice nurse. It's easy to forget about that burden, because Burnham and the other nurses Updike interviewed are so consummately professional. For Updike, simply overhearing conversations between patients and loved ones sometimes would make her so emotional, she would have to “go look at a lamp in the corner.” The nurses can't do this, of course, and yet they also can't just have tunnel vision for clinical tasks (change this catheter, dispense this med). I was struck by how much of their job is communicating with distraught family members, trying to connect with a dying person to discern what might bring comfort, and basically providing complex care with a physical, emotional and spiritual dimension.
For example, Updike tells how when her own stepfather was on the verge of death, the hospice nurse, Jenny, encouraged all his loved ones to give him a drop of water and whisper their names to him, so he would know who was there giving him the drink. (Her stepfather's death inspired her to do a story about hospice.)
“As a ritual, it felt comforting and sad and vaguely religious,” Updike said. “I had no idea how badly we'd needed a ritual at that moment, until Jenny gave us one.”
But being a hospice nurse isn't all about the soft touch and whispered words of support — part of the job is delivering very tough information. At one point, Burnham tells a crying woman why her mother is almost certainly dying and with breathtaking precision goes through a list of telltale symptoms, from fluttering heart to mottled feet. Burnham says she would “bet her nursing license” that the patient is in her final decline. This might sound heartless, but Burnham's directness and confidence in her own expertise was a mercy to the woman's daughter.
While “Death” is in many ways a testament to professional hospice nurses, “Prison Terminal” is a testament to a very different type of caregiver: the prisoners who staff the hospice at the Iowa State Penitentiary.
The hospice program in Iowa launched in 2006, thanks to the efforts of Marilyn Sales, RN. She has practiced in correctional facilities for decades and overcame significant obstacles to get the hospice off the ground. Now, it is one of about 75 prison hospices nationwide, and one of the few where prisoner volunteers serve as caregivers. Filmmaker Edgar Barens spent months creating the documentary, which focuses on the last days of Jack Hall, a World War II POW serving a life sentence for murder.
It is a risk to draw on the prison population for hospice volunteers, but the film shows the Fort Madison volunteers providing amazingly compassionate care for Hall, from helping him with daily living activities to keeping constant vigil during his final days. One of those volunteers, a lifer named Herky, described why the prisoners embraced the hospice:
“They used to die in these rooms by themselves,” he said of prisoners. “The nurses would get in here when they could, but they had a full schedule. We've grown to be like brothers. We see each other every day, seven days a week, twenty-four hours a day. We always wondered who was going to be the last one living to take care of the rest of them. When they brought in a hospice, they gave us an avenue to take care of each other.”
To me, this is the biggest difference between “Prison Terminal” and “Death.” In the prison documentary, the hospice volunteers are very open about how they put themselves in the shoes of each patient, how they see the hospice as a means of taking care of their own and ensuring that someone will be there to take care of them at the end of their own sentences, and lives. In the radio show, the nurses emphasize how important it is that they disassociate from their patients. To cope, to avoid that state of mind in which they can't recall the president's name, they try not to think of their spouses, their children or themselves as needing hospice care.
“Everyone” said that the “cases that are hardest to defend against” are those “where you can't not picture yourself when you look at them,” Updike reported. This might mean a patient the same age as the nurse, or one of the nurse's children.
I'm not suggesting that professional hospice nurses should identify more with their patients. The prisoner volunteers handle far fewer cases than someone like Pattie Burnham, so they don't need the same type of coping mechanisms. But for the rest of us — those who aren't heroic professional hospice caregivers — I do think it's valuable to keep the message of “Prison Terminal” in mind. That is, if caring for the dying comes with burdens, it also is a privilege. In the world of the prison, it's a quite literal privilege — only prisoners who have proven worthy are allowed that opportunity.
Updike at one point says “death makes narcissists of us all,” meaning that being around the dying, we can't help but think of our own inevitable end. She presents this as a potential impediment to providing good care, arguing that we have to find ways to cope with our fears and dread to give our loved ones what they need at the end of their lives. But disassociating ourselves from the dying person might not be the best solution. The prisoner volunteers show that actively thinking about and accepting our own mortality might actually give us greater strength to take care of each other — and should make us even more appreciative of the work done by the pros.
Tim Mullaney is Senior Staff Writer at McKnight's. Follow him @TimMullaneyLTC.