Like evil twins in a horror movie, fear and ignorance stalk those in hospice care.
This happened: [Disclaimer]
A hospice nurse described one of her patients—let’s say this was a mother of several adult children and also a wife of four plus decades—who lay dying in a rented hospital bed in the living room. Most of the family had gathered at the home. Most talked with their loved one or did chores like cleaning the bathroom or preparing meals. But one family member—let’s say it was the oldest daughter—arrived, but never entered the living room. Never offered to help. This daughter surveyed the activity around the metal-framed bed from the entryway, and then hurried down a hallway, away from her family, away from her mother.
Was she afraid of death?
This happened: [Disclaimer]
A doctor described a lengthy conversation with several siblings about adjusting medications for their oldest brother. Because of his life-liming illness, there was no longer a need for certain drugs that had once been critical. One medication was Coumadin, a blood thinner for reducing and preventing blood clots. Some take Coumadin for short periods of time, while others require long-term use. The hospice physician felt the patient was no longer benefiting from the current dosage.
One of the patient’s brothers asked, “If he’s off the Coumadin junk, will he move slower because his blood will be thicker?”
When the doctor shared that story in a patient care meeting, several nurses chuckled and most of the other hospice staff smiled (yes, even medically stupid me couldn’t resist a grin). But the doctor immediately cautioned how careful all of us have to be with patients and caregivers. How could the brother—or most caregivers—grasp the complexities of medicine in general, let alone the specific reactions from a particular drug?
Isn’t it funny to imagine a blood “thinner” like Coumadin could help someone move faster, while eliminating it might slow the patient down!
However, there is a peculiar logic to that perspective. I’m a San Francisco Giants baseball fan and was impressed, way back in the 2014 World Series, at the speed of—I’ll be polite about body images here—chunky third baseman Pablo Sandoval. Sandoval is a “thick around the waist” guy. And while he does move fast for a man of his age and girth, most of Sandoval’s “thinner” teammates can more quickly scamper around the bases when they get a hit.
Thick is slower? Thin is faster?
As the doctor pointed out, most served by hospice are ignorant about medicine. Perhaps they are experts in law, teaching, budgets, plumbing, baking, or hedge fund management. We are a nation of professionals and specialists. But, to quote lyrics from Sam Cooke’s “Wonderful World,” many . . .
Don’t know much about history
Don’t know much biology
Don’t know much about a science book
Don’t know much about the French I took
And most don’t know much about 21st century medicine.
A hospice nurse should remember everything requires a clear explanation. A caregiver—who’s trying to make sure a loved one is as comfortable as possible—should feel free to ask any question and deserves an answer he or she understands.
There are no stupid questions. We often reassure people with those words, but it’s important for the one asking and the one answering to remember it is true.
Why? Because ignorance’s evil twin always lurks in the shadows. The dying, and those caring for the dying, are afraid.
We gaze into a room where death has arrived, where the mother who’d always been strong, had been the one to care for others, has become dependent on those others. No one invited death in. No one is prepared for this time. While there are hundreds of bad, sad, and mad excuses to turn a back on the dying and walk away . . . quite a few of them make sense. We do fear the dying. We do fear the changes. We do fear the absence of a future.
We also fear the obvious, like how a room smells of stale urine or cloying flowers.
We fear the complicated, like unresolved anger between mother and daughter or festering rivalries between siblings.
In most horror movies, the evil twins are overcome because Hollywood prefers an ending where the hero triumps. But nothing in hospice is scripted.
This I would say to the professionals in hospice: every patient and caregiver is hurting. No one wants to appear ignorant, and yet in the time of dying there are many moments that reveal ignorance. Every patient or caregiver we serve is afraid. Even the ones who don’t seem afraid . . . are afraid!
This I would say to patients facing their final days and to those caring for the people they love the most: ask your questions—any question—and you deserve the best answer. And especially for ones who walk away, or for the ones where it takes all their strength to stay in the room, don’t ignore your fears. Don’t keep them only to yourself.
No carefully written Hollywood script resolves the real ignorance or real fear. Instead, we overcome the “twins” by sharing awkward, honest, risky words with each other.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)
About the image a top: The twins in Stanley Kubrick’s film were played by British actresses, and twin sisters, Lisa and Louise Burns.by