Friday afternoon at the hospice center. I punch in and eye the whiteboard, looking for empty white strips and unfamiliar names, quickly piecing together who has died, who is still living in this 18-bed facility. I start at the bottom of the list, Room 19 (no Room 13 here — these folks have had their share of bad luck). Room 19 is the stomping ground of the Delgado family. Miguelito, five years old, with his bald pate and big eyes, is speeding up and down the hallways in a motorized Big Wheel. His two older sisters will be coming “home” from grade school soon, and his younger sister, Lily, is being her cute, showboat self, hanging out once again at the nurses station while mom naps on the extra bed in Miguelito’s room…
In Room 16 is the John Roth family, with Miles Davis on the CD player and pale ale in the cooler. They were hanging out last night, and they’ll be hanging out tonight and through the weekend, spirits never flagging, manners always impeccable, their love for their husband and father and brother deep and wide and joyful…
In Room 12 is “Airman” Mike Grable, an African-American and former professional wrestler, whose seven children will one day soon accompany his barrel-chested body down the long corridor, past the nurses station, through the lobby, and out the front door, singing “Amazing Grace” as they go.
The north-wing patients are present and accounted for.
It is a quiet but lively place , this unit. Periodically, ambulance drivers enter with their bright orange stretcher contraptions, bearing sedated patients whose pale faces look tiredly out over white sheets and blankets, a small knot of family bringing up the rear. And while many of these patients end up being discharged to their homes after short stays, a great many of them leave on the black stretchers maneuvered down the corridor by funeral home attendants, the same family members trailing behind.
What happens while they’re here cannot but prompt reflection.
I am a nurse practitioner by training, and the field of hospice and palliative care is my métier. I have assumed various roles and performed various duties over the years, spending time as a field nurse visiting hospice patients and families in their homes, as a hospital-based palliative-care consultant trending to terminally ill patients in the hospital or being discharged, and as a nurse in the freestanding hospice facility…
There are a few things one learns, playing a bit role in the lives of the dying and their families. One is that “death with dignity” is an ambiguous term. Another is that suffering is part of the human condition, and trying to stamp it out or ignore it or gloss over it is a dangerous illusion… Some patients and families are veritable black holes of need, with generations of sin and dysfunction that hardly lend themselves to easy understanding, let alone tidy solutions, happy deaths, and what the bereavement experts call “uncomplicated grief.” Affixed to the wall above my desk is a scrap of paper with this reminder from H.L. Mencken: “There is always an easy solution to every human problem — neat, plausible, and wrong.”
Hospice workers know — but sometimes forget— that we are seeing just the tip of the iceberg of people’s histories… I often find myself, when I am visiting patients in their homes, in the position of being the last new person to get to know them, of being the last non family contact with the outside world. Sometimes I am rather absurdly but quite obviously looked to as the embodiment of “the world,” as in, “What does the world think of me? How will the world remember me?” Opinions about the dying person are already well established and seemingly unshakeable among family members. It is with the visitors from hospice that the dying person has a last chance to be better than he really was…
It’s 9:30 p.m. on the unit. The Delgados have become so many lumps under blankets on the beds, the couch, the floor. I learned that lesson the other night, when I unsuspectingly stepped on tiny Lily as I tiptoes into Miguelito’s darkened room to administer, through the “central line” sutured into his chest, the final medications of the day. It is against his grieving father’s chest that Miguelito’s sedated body will be pressed weeks later after a morning of fright and struggles for air. Death will come that afternoon, quietly, before his doting sisters return from school…
John Roth’s family welcomes me with smiles. Frank Morgan’s “Mood Indigo” has replaced Miles Davis on the CD player. A daughter follows me out into the hallway. “Those doors to his patio — a bed can fit through them?” “Sure,” I say “We could wheel him out there?” “Sure,” I say. A few days later, the sun will be shining, the breeze blowing, and the omnipresent family scattered around the patio when John draws his last breath. Each time there’s a “patio death” I think of St. Francis, hoisted outdoors in his last hour by his own request that he might die lying upon the cool brown earth…
In Mr. Grable’s room, one daughter remains. “How do you keep doing this work?” she asks me. “Isn’t it depressing?” No matter how many times I am asked that question, it still takes me by surprise. I am not the one with the chronic disease, dealing with the ravages of it on my body and grieving the impending loss of my life and all that is dear to me. Even more to the point, I am not a family member who has been shouldering the multiple burdens of caregiving, of medical bills, of contemplating life without my beloved. It is a strange thing to walk the hospice hallways, amidst such suffering, and to have a question posed about my sustenance.
I am tongue-tied not only because the question seems directed to the wrong party, but because I struggle to put acceptable words to the images and feelings that crowd my mind. “Should I say it?” I think. “Should I just say, I pray?” For the Dorian Gray families, ugly from decades of sin and dysfunction; for the relentlessly cheerful patient with ALS who smiles even as she cries about no longer being able to walk in the woods or weed her garden; for a 26-year-old patient’s mother, stricken and wide-eyed, absolutely certain that her lapsed Lutheran son will be going to hell; for the family of a strong and vibrant colleague who just weeks before had been bathing patients but then occupied a room of her own on the unit, preceding into death some whom she had bathed. In prayer, as in life, the neat categories — patients, families, professionals — meld into one another. We are all the living; we are all the dying, all of us sustained by grace and mercy and love.
Photo Credit: Michael Mulvey/Dallas Morning News/Corbis