To Accept What Cannot Be Helped: at 80, a woman with a fatal disease knows she doesn't want to die in the hospital and discovers, with her family, what that really means.

Author:Hulbert, Ann

"Your hands are so wrinkly. Are you going to die?" my nephew asked my mother when he was about three. "Yes I am," she answered, pausing to stick a knitting needle behind her ear and take his small, smooth hand in hers as they sat on the couch more than 15 years ago. "And you never know when it might happen." Here she resumed work on the row of whatever it was she was knitting and added, "I'm an old toad, you know." Daniel looked stricken. Telling this story, my sister rolls her eyes, knowing the rest of the family won't be surprised by it. "Promise me you'll pull the plug when my time comes" is a refrain we'd been hearing from my mother for ages.

Two years ago this coming June my mother--"an 80-year-old in a 60-year-old's body," the pulmonologist told her--was ambushed by a diagnosis of Stage IV adenocarcinoma of the lungs. It had already spread to her spine and left hip. Barely two weeks earlier, she'd gone out west for another grandchild's college graduation and hiked along a cliff on the Oregon coast. Could she really have inoperable lung cancer? The pulmonologist, to whom she was referred by a GP alarmed at what he saw on her chest x-ray, needed a CT scan to be convinced. In the windowless examining room at the hospital in Brooklyn, my mother said sadly yet matter of factly, "Well, I guess that's pretty much what I've been expecting to hear. We've all got to go somehow, don't we?"

We all do, of course. But I don't think there are many bustling, nonbelieving souls like my mother who are ready to face that fact when rudely confronted with it. In her case, facing it meant ruling out treatment--the chemotherapy and radiation that the pulmonologist urged to ease pain and eke out a few more months. "If geezers like me have lots of tests and treatments," she told the doctor, "there isn't going to be enough money to spend on the other end. This health-care mess isn't going to be fixed if we aren't ready to get out of the way." Nonplussed on his little stool, he shook his head and raised an eyebrow. "Well, I've heard that view before, but never from someone in your situation. People generally change their tune when it suddenly applies to them."

Actually, I think my mother delivered her pronouncement so she wouldn't cry. As she sat there, suddenly told she would soon be gone, I imagine it helped a little to take aim at the Medicare cliche. With the nation's health-care debate heating up in the summer of 2009, those words were at the ready: she could voice the noninterventionist, parsimonious, yet also generous sentiments long lodged in her now "moth-eaten" (the doctor's words) bones. For she was a rarity--a grandmother in favor of having the plug pulled and ready to live, or rather die, by that all- but-taboo vision of the end of things. But right then, in that airless room, she needed most of all to rise above an abyss. Look at me, a very lucky old lady who has made it to 80; tell me it makes any sense to rack up huge bills trying to add on an extra couple of months (at best) to a life that isn't likely to last out the year. It was her way of rallying, and relieving us of the awful weight of the moment. My father looked stricken.

Over a late dinner one evening three months after that day in the doctor's office, I asked her if I might write something, sometime, about her end. An owl had just hooted as we sat at the table on the screened-in porch of my parents' country place in a tiny Massachusetts town. She nodded, though almost imperceptibly in the candlelit darkness, and waved away the notion that there was anything particularly notable in her approach to her last months (if only she knew how many). Yet as those numbered days passed at a curious pace, so slow and so swift, the experience of taking no extraordinary measures felt, well, extraordinary. The owls hooted, answering questions with questions. We listened and gazed at the coneflower in the bud vase, picked the first day my mother had arrived up there from New York, two months earlier. She'd had to trim its weakening stem, and the neck of the vase now offered crucial support, but the petals drooped only slightly and the yellow was still vibrant. ("O'Henry," she had named it.) She savored the last bite of what little had been on her plate and looked at me: "Could I really be dying?"

............ MY MOTHER, who died six months after she was diagnosed, was acutely grateful to be supported at almost every turn in her quest to end life on her own terms--which is not to say that "letting go" came at all naturally to her. Even for someone thoroughly out of step with our more-care-is-better medical ethos, it proved anything but easy to relinquish control. For her, resisting the doctors' edicts was not so hard; that was her way of taking charge. Yet then what? To embrace ordinary, loving care, knowing the burden it put on others, was a struggle. But her odyssey--our odyssey--allowed us to feel our way toward those feats together, with few regrets and many rewards alongside the inevitable fear and pain. In a culture of Promethean aspirations, and in busy hospital corridors, it is rare to get that chance.


My mother was what I think of as "pre-choice": saying no to doctors for her wasn't the result of endless Googling and anxious deliberating with experts. It was a response to her past, reinforced by temperament. A child of the Depression and of Swiss immigrants, my mother never outgrew an almost un-American aversion to waste (of time, among other things) and an appreciation of the unintended consequences of so many of our fine-tuned, frenetic efforts at control. That did not keep her from more than her share of such efforts, as she was well aware--her sense of irony went deep. Throughout her life she fussed over others, briskly accomplished tasks large and small, and constantly planned far ahead. We joked about how obsessively she marked up her calendar with notes about who would be where when.

As for herself, she had a long record of reflexively resisting medical interventions of pretty much any sort. My mother made it to 80 without ever having a mammogram. A smoker since her teens, she was ready with her classic line whenever she was scolded: "Well, we've all got to go somehow." Bad bouts of bronchitis after a harrowing hospitalization with pneumonia finally convinced her in the early 1990s to quit--with difficulty. As soon as she'd gotten the cancer verdict, she wanted to dispense with the probing so expensive and so intrusive. She wanted to escape the dingy hospital corridors, the endless waits, the nurses who dragged their feet and addressed her and my father as though they were dim children, the doctors who urged procedures knowing she was a patient with top-notch health insurance. Under gentle pressure, she acquiesced to our desire for a basic round of screening to confirm that the cancer had indeed started in her lungs and to check for imminent bone breakage. She couldn't resist bridling even as she obeyed, noting that just about every procedure-whatever the result--was all but guaranteed to make yet another procedure seem advisable. How impossible it could be to escape! In two weeks she probably...

To continue reading