American Life: Auntie Mame Joins Hospice
PHOENIX—Less than 20 minutes into the Dial-a-Ride trip, she had learned about the driver. He was adopted. He was certainly not Australian but was English, and shocked to be asked if he was an Aussie. He planned to open his own business. He wished he had better skin, in order to charm the ladies.
At least one lady was charmed. Her aquamarine eyes sparkled. This may have been her and her daughter’s last trip to the Desert Botanical Garden in Phoenix, Ariz. She was going to wring every bit of meaning and fun from it. You could almost see a hat and cane in her entertaining grasp.
Parent and child, mysteriously, both had the same diagnosis. Mother started hospice care, meaning she may live six months or less. Daughter started palliative care, after chemotherapy and radiation. “Palliative care focuses on achieving the best-possible quality of life for patients and their family caregivers, based on patient and family needs and goals” no matter how long one is expected to live, according to a study published by the National Institutes of Health.
Quality of Life
“There’s a growing awareness that the use of aggressive, expensive, medical interventions at the end of life often doesn’t improve patients’ quality of life and may even make it worse,” said Alexi Wright, M.D., MPH, lead author of a study by Dana-Farber Cancer Institute researchers, in a press release.
“Hospice care, which focuses on intensive symptom management at home, is an attractive option for many people. But unless people make an end-of-life care plan while they’re healthy, spelling out their preferences in advance, these important decisions are often made for them, or occur in a crisis atmosphere,” said Wright.
For these two women, the decisions came after the diagnoses, and it was a wrenching process. But each had the time and space to choose what they wanted.
“I will not die in a hospital,” said the elder. And she really will not, because she is working with Hospice of the Valley. It is the largest nonprofit hospice in the nation. Despite its size, “we remain true to our original mission: Bringing comfort and dignity as life nears its end. One patient and family at a time.”
Tooling around the garden on her motorized scooter, she made more friends. A garden volunteer had the identical scooter, red and shiny like a candy apple “because we’re Republicans!” The white-haired grandmothers exchanged much information: 60 years volunteering at the garden, nine years in the desert, originally from Ohio, originally from New York, and the “g” in the endangered Saguaro cactus is pronounced like a “w”. Living stones are from South Africa. See them, there!
Heavy rain had been predicted for that day, from a Pacific storm bearing down from Northern California. In a small mercy, it blew away by late morning.
We could see the gray and green and blue and purple succulents and cacti and the marvels in the western sky. We read almost all the plant labels. We learned where aloes come from (Africa). We admired the yellow spiral of lanterns on the sandy ground for the night’s Luminarias exhibit. We thought we heard a Mockingjay, but it turned out to be a Boy Scout.
In the garden restaurant, the hostess warned the waiter, “They are rowdy!”
The daughter said there ought to be something like the Make-a-Wish Foundation for adults. It’s a nonprofit that grants the wishes of children with life-threatening illnesses. But she had put together her own make-a-wish experience for her mother. She acted as a one-woman wish foundation.
She said that she had become interested only in experiences, not in things. She found herself wanting to try tastes she had never wanted before. She yearns to give her art and her writing to people in hospice.
Many people move in a generous direction when faced with life-threatening illness. Hospice and palliative care give them time and space to make peace, to share, to make connections.
Atul Gawande’s “Being Mortal: Medicine and What Matters in the End” states doctors and their patients should know when to say when, and should be honest. Daughter is reading it.
Mother is swinging back and forth. We held each other for a long time, before I left. She drew away and said one last, gallant, false, thing, “I’m going to have to make it back to Atlanta someday.”