“I want everything done. Please, Dr. Rousseau, do everything. We have two children–they can’t be without their father. Do you understand? Do what it takes to keep him alive!”
Angie, a petite woman with long blonde hair, fixes me with piercing blue eyes. Her husband, Joe, fifty-two, has scleroderma, an autoimmune disease. In its most devastating form, it hardens the skin and destroys the kidneys, heart and lungs.
Joe is dying of sepsis and multi-organ failure in my hospital’s intensive-care unit.
“Please, do whatever it takes to keep him alive,” Angie pleads.
Suddenly, I am thrust into the depths of grief. Not hers, mine. It happens just like that–no warning, no nothing, just a painful inner quivering and the trickle of tears.
“I want everything done,” Angie repeats. Then she stops and stares at me. Her eyes look down at the table, then up at me again.
“Are you okay?” she asks.
“Yes, I’m fine.”
“I didn’t mean to make you cry,” she says softly.
“You didn’t. It’s okay. But let’s talk about your husband.”
“What’s the matter?” she asks.
Suddenly it’s I who am the reluctant patient being interrogated, the one whose story is being awkwardly dissected, piece by piece.
“It’s okay…I’m fine. We should to talk about your husband.”
“Did you lose someone?”
I ask myself how she knows. Does my face paint such a picture? Do my eyes write such story?
“I did, but let’s talk about your husband,” I press on. “We need to discuss what his goals of care would be, how we can honor his wishes, how we can provide you and your children with comfort and support…”
Reciting these words, I feel awkward and a bit unsettled.
“Was it your wife?” Angie asks, as unerring as a homing pigeon zeroing in for a landing.
“I really want to know,” she says earnestly. “It may help me.”
Those last four words catch my attention.
Would my self-disclosure really help her, or would it wrongly deflect attention away from her grief and onto my sorrow? Even worse, would it seem to minimize the gravity of her husband’s illness?
I ponder my options. They’re limited: to forcibly move on, to reschedule our meeting or to cautiously tell my story.
But it doesn’t matter what I think in any case. Try as I might, Angie will not deal with her husband’s situation until she hears my story.
So I briefly tell Angie about my wife Pamela, with whom I lived for thirty years and had two beautiful daughters, and who became deathly ill from scleroderma, also at fifty-two years of age, like Joe. She also, like him, had abnormal liver-function tests and failing kidneys. I tell Angie how I struggled with deciding whether to transition to comfort care and when to withdraw life-sustaining therapy, just as she’s now doing.
I stop talking and look at her, feeling like a pathetic post-traumatic-stress victim suffering a flashback. In reality, it’s simply grief, wreaking its impulsive and unexpected torment at an inopportune time–as if there ever were an opportune time…
I should have expected it, I tell myself. A person fifty-two years of age, suffering from scleroderma…these two flashpoints trigger grief for me even now, four-and-a-half years after my wife’s death.
A clumsy, uncomfortable silence fills the room. I don’t know what to do. Angie and I just sit there. I long for her to talk, to utter even one word, to say, “Now let’s talk about Joe.”
Finally, after what seems like forever and a day, she speaks.
“Can Joe recover from the liver and kidney failure? Can he get off of the ventilator? Can we cure the infection?”
These are the same things we were discussing twenty minutes ago, but now they seem bathed in a new light.
I feel as though Angie realizes that I’m not a just another white coat sitting across from her. I’m someone who’s survived a loved one’s death–someone who can understand what she’s experiencing.
She sits forward in her chair, frowns and pushes her hair back in a wide sweep.
“Dr. Rousseau, for tonight, and until I come back tomorrow, I want you to tell the intensive-care team to do everything to keep Joe alive–push on his chest, shock him, dialyze him, whatever. I need time to speak to my children, to prepare them. But tomorrow, when we’re here, I want everything stopped, and morphine or whatever else given to keep him comfortable. Can you do that?”
“I can,” I answer, heaving an inner sigh of relief.
I wonder uneasily if I’ve eased the anguish of Angie’s decision; I hope so. Still, we have a plan, and a good one, I believe–as good as any plan can be when someone is dying.
The night passes uneventfully, and at 10:00 the following morning, we stop “everything,” with Angie and her daughters at standing bedside.
Their vigil is short-lived. Joe leaves this world at 10:08 AM.
As I look on, I realize that sharing my loss has helped Angie with her loss–that my grief has eased her grief, if only a little. In the midst of death, our lives have intertwined, and this has softened Angie’s wounds.
And, for the moment, everything is as it should be.
About the author:
A hospice and palliative medicine physician for the past thirty years, Paul Rousseau has had some 350 pieces published in Pulse–voices from the heart of medicine, Annals of Internal Medicine, JAMA, Blood and Thunder and elsewhere. “I’ve been writing my whole life, but I have used writing as therapy ever since the death of my wife. I enjoy writing about the patients and families who allow me the honor of entering their lives at such a frightening and vulnerable time.”