Blanched by anemia, Mary rested quietly in the hospital bed. Her pallor made her barely visible amid the bleached bed linens–she seemed a mere shock of white hair against the pillowcase.
Age 93, she’d visited the hospital a half-dozen times in as many months, shuttling between nursing home and hospital as many elders unwittingly do in their last year of life. She may have preferred to stay put, but no one knew for sure: as a person with dementia, she was presumably unable to speak for herself.
I was a palliative-care nurse practitioner in the hospital. Until about two decades ago, whenever someone neared the end of life the details of care were discussed with his or her doctor; nowadays, that intimate discussion often takes place in the hospital, with a total stranger. For Mary, I was that stranger.
Hospitalized for severe anemia, she had been scheduled for a colonoscopy. But when she refused to drink the four-liter liquid prep, her doctor flipped her to me to evaluate her “goals of care.”
Goals of care–that’s our euphemism for how a person wants to die. We ask questions like, “Do you want your heart resuscitated if it stops?” or “Do you want a breathing machine if you can’t breathe?” And, finally, “Do you want antibiotics or transfusions?”
Mary couldn’t walk and was suffering from several other medical issues besides dementia. Her quality of life was grim and getting grimmer. In the last analysis, though, only she knew whether she wanted to prolong her existence and, if so, how. My job was to find this out by means of a “life review”–using the patient’s life history as the starting point for a conversation with the patient and the her family about her wishes.
In Mary’s case, “family” meant her 95 year-old husband, Tom, who was also her healthcare proxy. “He’s not really with it,” warned the nurse on duty.
Feeling some trepidation, I dialed his number. Tom answered at the first ring, sounding breathless, like someone expecting bad news. I introduced myself, explaining my role at the hospital and why I was calling.
“How do you think Mary is doing?” I asked.
“Not so good,” he replied quietly.
It quickly became clear that Tom was less interested in discussing Mary’s medical problems than in reminiscing about the girl he’d married. And it was equally clear that, after 65 years of marriage, he was still madly in love with his bride.
As we talked over the next hour, I learned that my fragile patient was a true living hero.
They’d met in the Navy. She was a nurse; Tom, an intelligence officer.
When I told Tom that my job was to “navigate” Mary’s care goals, he latched onto the familiar nautical term: “Oh, so you’re the navigator.”
He told me that Mary had been the first nurse on the scene at Boston’s disastrous 1940 Cocoanut Grove inferno, the deadliest nightclub fire in US history. And during World War II, she’d been the first Navy woman to fly a plane.
“Given Mary’s nursing experience and knowledge, what kind of medical care would she want now?” I asked.
“Not this,” Tom replied quickly and firmly. “She would want her dignity.”
The next day, he and I met with Mary’s medical team. Tom shared photographs of Mary during her active-duty days, and of himself and Mary in their wedding photo, looking breathtakingly stately and dignified. He, too, was a hero, I learned: he’d been a member of the British team who’d cracked the German Enigma code, a feat credited by many for shortening the war and saving untold lives.
Thinking of all that these two had accomplished, I felt overwhelmingly saddened to see them relegated to the role of warehoused elders. All of our country’s rhetoric about the “Greatest Generation” rang hollow.
Shortly after our talk, I approached Mary’s bedside.
“Good morning, Lieutenant McIntyre,” I said.
Her eyes flew open, bright robin’s-egg blue and intelligent.
“I heard you were a Navy nurse,” I said.
“I am a Navy nurse,” she replied.
“Tom told me that you were the first woman to fly a plane in the Navy. You’re a hero.”
She looked at me, her face lucid and animated, then said modestly, “Oh, well, that was a long time ago.”
We chatted a few minutes more, then I asked, “What treatment would you like now, given your health condition?”
“Well, I just want to die in peace. No tests, needles or procedures.”
The robin’s eggs faded, and she drifted back to sleep.
Mary’s team determined that there would be no colonoscopy, no imaging, no further debilitating tests or painful treatments, and that Mary would return to the nursing home on hospice care. A few weeks later, Lieutenant Mary McIntyre died, lying comfortably in her nursing-home bed, surrounded by her medals and memorabilia, and with Tom by her side.
It was a hero’s death.
Peg Ackerman, 57, is a nurse practitioner and clinical director at Commonwealth Community Care in Boston, where she directs programs for people with disabilities. She “first turned to writing about healthcare during the early AIDs epidemic, when I felt a need to write about my brother and about other AIDs victims who were unable to get proper care.” This post was initially published in Pulse.