Living With Cancer: A Tour of Hospice
Before the visit, I had been split in two not by fear of death but by dread of dying — in anxiety, dementia, but mostly in pain from recurrent ovarian cancer.
My mind was always running on two tracks. On one track, I attended to whatever actual event was occurring, be it an outing to the library or the making of a meal. The simultaneous second track was psychic or psychotic, depending on your point of view, but invariably chilling. It took me to scenes of the degeneration that would ensue after the targeted drug I am taking stopped working.
So I welcomed the idea suggested by a member of my cancer support group: that we tour the new hospice facility where our friend Leslie had died. “Not a recruitment visit, just a field trip,” we joked as we decided to invite our partners to join us in meeting with the co-director of Hospice House, Dr. Robert Stone.
On a fearfully cold day, we drove to a lodge on a wooded lot at the edge of our small town. By a blazing fireplace surrounded by comfortable chairs, about 10 of us amassed — six women dealing with gynecological cancer and some of our husbands. We were quiet because the family of a patient was using the adjacent kitchen.
A lanky and gentle Dr. Stone welcomed us and proceeded to explain the program. To enroll in hospice, patients must have a life expectancy of six months or less and promise to forgo further curative treatments. He had issues with these stipulations, but they were put in place by the insurance systems that cover costs. The vast majority of hospice participants remain at home with nurses on call, a smaller percentage in nursing homes, and only 5 percent arrive to reside in the facility — not for long-term residence but for five days or a week. They come to give a respite to their primary caretaker, or to stabilize and return home, or to die during their stay.
“Medicare and Anthem love us,” Dr. Stone said with a laugh. Apparently, the bill for all-inclusive care at Hospice House is something like $550 a day, compared with $5,000 in intensive care. With a passing reference to Woody Allen’s line, “I’m not afraid of death; I just don’t want to be there when it happens,” he pointed out the play area for young children, introduced us to the nurses in charge and took us through a succession of meditation or meeting rooms for caregivers as well as hospital-like rooms for patients.
But even these did not have the feel of a hospital. The place was quiet and beautifully lit. Many rooms had French doors wide enough to open, in better weather, and through which a bed could be slid onto a deck overlooking the woods. There were paintings on the walls and upholstered chairs that converted into beds for caregivers. On the ceiling over a patient’s bed, an odd mechanism — described as a drone with a pulley — could be used to convey the dying person into a large bathtub in the adjoining bathroom.
I saw Julia blanch at the thought of the helpless frailty of the expiring body. But I also overheard the equanimity in Dana’s voice: she was telling her husband what a relief it was to know that he and their kids could be freed from arduous physical caretaking to focus on their emotional leave-taking.
“It feels deeply respectful,” Dana whispered to me as Dr. Stone waved goodbye by grinning and exclaiming, “I don’t want to see you people back here too soon.” I agreed with them both. Is that why an icy weight lifted while I floated back through the fireplace room and the massive front door to the parking lot?
From the moment of diagnosis, I knew that I did not want to end up in a hospital, and especially not in the I.C.U. — with its blinking and beeping machines, its fluorescent lights never turned off, its frantic rhythms of intubations and C.P.R.s and codes and respirators, its endotracheal and feeding tubes, its infections and psychoses. It shocked me to learn that this is what happens to one out of five Americans.
The information I clasped to myself in the car consisted of the answer to a question I had managed to ask Dr. Stone when we stood around the bathtub: “Can you control pain during the dying process?” With extraordinary confidence, this diffident man drew himself up to his full height to explain that he was “fully confident” he could “dial up” sedation when needed and “dial it down” when a patient wanted to gain greater consciousness for, say, a conversation with a family member. He then added, “Pain is treatable.” No equivocation, no qualification.
Hugging that flat statement, I warmed at the thought of leaving behind the wearisome parallel tracks. Perhaps I could fully experience the next library outing, the braising and seasoning, knowing now that the road not yet taken might be less agonizing than I had feared.
Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of “Memoir of a Debulked Woman,” which explores her experience with ovarian cancer.
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