by Paul Rousseau, M.D.
Robert’s muscles are withered threads of paralysis his body dependent on someone for everything It’s Lou Gehrig’s disease And now he’s breathless, his lips puckered, his chest heavy and nearly still
His wife sits bedside tapping her toes picking at her fingernails “Robert’s physician doesn’t want to put him on a ventilator He says I couldn’t care for him, especially at my age, and nursing homes won’t allow ventilators He says it’s time to keep him comfortable and let him, you know, let him…” She leans forward throws her head into her hands and rocks back and forth Her stiff hairdo crumples to the side “Oh God, I can’t live without him. Do you hear me? I can’t live without him I can care for him on a ventilator I can Please let me try”
Robert’s advance directive—written several years prior when he was in good health—acknowledges his want of a ventilator “…if there’s hope of living a reasonable life” However a “reasonable life” is ambiguous It’s also personal and individual what one sees as horrific another sees as tolerable Moreover none of us know what we’d do unto we’re thrust into a situation What we think we’d do we may not do And in crises the choices blur It’s fight or flight live or die and to live is the usual choice Regardless of the disease regardless of the burdens
His wife looks to the ceiling hands clasped in prayer Then she pivots grabs her purse and pulls out her wallet Her face reddens “If it’s the goddamned money everyone’s worried about we have savings and he’s got Medicare they’ll pay for it” She throws a twenty-dollar bill and some change on the floor My head jerks startled
I glance at Robert. His breathing is faint his lips a dusky blue “Robert, I’ll call your doctor and tell him to place you on a ventilator now” I bend to pick up the money There’s a groan of breath then silence I look at Robert he’s not breathing His wife throws her arms up and slides from chair to floor her voice screaming “Please help him”
He’s on a ventilator He has pneumonia His needled arms marinate his lungs in antibiotics but the bacteria are determined They replicate by the hour clogging air spaces smothering his breath They escape to distant parts swelling their contagion
The heart monitor shrills a piercing sound His heart flutters a rapid irregular rhythm slows then stops Resuscitation is started He’s pumped and pushed and shocked for forty minutes The bitter smell of scorched hair slices the air I wonder what we’re doing Forty minutes There’s no hope of a “reasonable life” I look down at his face his eyes still his pupils the size of dinner plates I feel for a pulse None He’s chilled near cold a neutral palette of rumpled gray He’s just this side of death almost rigor mortised
“Stop” I yell “Stop” I lean to whisper in his ear “I’m so sorry Robert”
I wash my hands put tissue to my eyes and step forward The door slides open Six wait two looking for Grandpa I tell them he’s passed “died” being too harsh a word There’s wailing and crying and a collapse of bodies His wife approaches and pulls me close her hand tight on my arm I smell stale perfume and the residue of waiting room coffee Her lips grimace and tremble She sways as if she’s going to fall I cradle her shoulders “Thank you doctor thank you for everything you did” I meet her eyes and nod awkwardly and wonder what did I do
The patient’s name and certain details have been changed to protect individual privacy.
Paul Rousseau is a semi-retired physician and writer, published in medical journals and a smattering of literary journals, including The Healing Muse, Blood and Thunder, Intima. A Journal of Narrative Medicine, Months To Years, Cleaning up Glitter, Burningword Literary Journal, Prometheus Dreaming, Hospital Drive, JAMA, Annals of Internal Medicine, Canadian Medical Association Journal, Tendon, and others. He is currently working on a collection of essays. He lives in Charleston, SC and longs to return to the west. Lover of dogs.