A story in a new book written by a physician brings back memories of my own struggles with my mother’s end-of-life care.
My local bookstore offers mystery books. Wrapped in brown paper, they offer teases: “Read me if you like…” It lists 4 book titles. Last week, 1 bag caught my eye: Read me if you liked When Breath Becomes Air, The Gene, Being Mortal, Do No Harm.
Internal Medicine: A Doctor’s Stories, burst out of the wrapping and had me from the first page. The “stories” Terrence Holt, the author and a physician, told in the first chapter, and every one following, probed into the whys and hows of doctors’ thinking processes. Particularly in emergency medicine, things happen that aren’t anticipated because patients come in without full medical histories. But most interesting is when the patients speak up. That’s when he realizes the limits of his profession.
Perhaps I’m biased because the first chapter dragged up uncomfortable visual snapshots of the last years of my mother’s life.
She suffered from COPD (chronic obstructive pulmonary disease) brought on by a lifetime habit of smoking 1 or 2 packs a day. As her ability to breathe worsened, the doctors recommended she keep oxygen at home. She refused.
Partly because of not using supplemental oxygen and partly because of the unstoppable progress of COPD, my mother began to experience episodes of serious respiratory distress. Rather than call an ambulance, for some reason, my 80+ year old father always drove her to the ER in a mad panic trying to outrun suffocation.
Ironically, my mother complained that oxygen masks made her feel suffocated. She hated them.
Her last time in the hospital she started to refuse the mask. She signed a DNR and a DNI (Do Not Resuscitate and Do Not Intubate) form with a nurse at her bedside while I was there. I couldn’t understand why she didn’t want a mask and adamantly refused to be intubated.
During that last stay, she kept taking the mask off even though it forced her into respiratory failure. Three times the doctors rushed her to the ICU and put a BiPAP breathing machine on. In order to keep it on her, they knocked her out with sedatives. This was ironic given that sedatives lower your respiratory function.
I’d never seen a BiPAP before but as soon as I saw my unconscious mother with this giant mask covering her nose and mouth, I knew my mother would be furious.
After a few days, she temporarily recovered enough to take it off and she told the nurses, the doctors and us, “never again.” Within a couple of days they knocked her out again and put the BiPAP on her. And then did it a 3rd time. We, her family, complained loudly. My mother had been very clear. But we didn’t have the guts to insist on it being removed because without it she would surely die.
She died anyway, angry at us all with the hated BiPAP forcing air into lungs that no longer worked. I hadn’t realized she was ready to die, but my father had. He, too, couldn’t understand why she had stopped fighting and why she hated the mask enough to choose to die, but he acknowledged it. Not that it mattered, the doctors did whatever they wanted without respecting her wishes.
I’ve hated those doctors, those nurses and that hospital.
Holt gracefully writes of a similar experience from his perspective as a medical intern in a hospital. His descriptions of the physical response to oxygen deprivation were already etched in my memories of my mother. He describes his battle of wills with the dying woman.
He writes about a woman who might be dying of respiratory distress, but could pull through, though she was struggling to remove the oxygen mask. For the third time that night in the ER, she pulled off the oxygen mask. The nurses called Holt to her room. He describes her position in bed which pulled up an unwilling memory from my subconscious of my mother.
The patient, Mrs. B, was propped up in bed now, leaning forward, her hands braced on her thighs to support her. The posture is called “tripoding” and it’s something people do instinctively when they’re having trouble getting air.
Holt remembers his conversation:
“Does this bother you so much?” I held the mask out.
She nodded and drew away. As if it could bite her, I thought.
“More than the way you’re feeling now?”
Her gaze clouded a moment. Unfair, I thought. Arguing with a dying woman.
She nodded again.
Just like my mother, I thought. The parallels got worse — and better — from there. I saw my mother in the gestures of the dying woman, when Holt increases the dose of an anti-anxiety drug called Ativan for her.
I waited, and when sleep seemed about to take her I slipped the mask over her face. A hand stirred, rose a few inches, wavered, then fell to her lap.
A few hours later, she had pulled the mask off again.
“Mrs. B,” I said again, willing her to look at me.
“You have to keep your mask on.” It did not sound so idiotic when I said it as it does now.
She shook her head.
“If you don’t do it,” I said, reaching out to take the mask from her hand, “you’re going to die.”
I heard that same conversation at my mother’s bedside. And just like my mother did, after a few minutes Mrs. B in Holt’s memoir pulled the mask off a few minutes later.
“I can’t breathe. I don’t want it.”
A few hours of struggle later, Holt discusses the case with a respiratory tech.
The tech didn’t actually shrug. “You don’t think you can tube her?”
“I can’t,” I gritted out. “DNI.”
“I can’t get her to wear an ordinary face mask.”
“Why don’t you just sedate her?”
It was a thought. She hadn’t refused the morphine. I could try adding on sedation until she would let me put a mask on her — perhaps even a tight-fitting BiPAP mask, the next-best thing to intubation. It could be done.
Unlike my mother, Mrs. B.’s hands were never tied to the bed. Unlike my mother she had enough energy to pull the BiPAP off. Like my mother, she died.
Reliving my mother’s death from this perspective was healing and hurting. It probed the old wound scratching some of the infection out. Why wouldn’t she tolerate the mask (and the oxygen hose and tank) if it meant she could have come home? Why wouldn’t she tolerate that for more time with us, her family? For whatever reason, she wouldn’t — or couldn’t. But at least now, reading from the doctor’s perspective, I see how it pained the doctors nearly as much to be able to do so little.
That was the first chapter of Holt’s essay/memoir collection. In the other stories, some people live, some die and in every case, insights are gained. His words draw pictures that are haunting, and he helped me understand some conditions much more clearly.
I heartily, meaning with my whole heart not just the pained part, recommend it for anyone who has had to sit at a bedside in a hospital.