My grandmother lived a full life and sought a quiet death. America's health-care system had a different idea of what was best.
By Jesse Ellison | Newsweek Web Exclusive | Reprinted from Newsweek, Sept 14, 2009.
In the two weeks leading up to my grandmother's death from lung cancer last January—three months shy of her 92nd birthday—she was transferred through four separate health-care facilities and six different beds. First, there was a hospice, where she was not allowed to receive more than just "respite" care. Next, she was moved to an assisted-living facility, where she fell, twice. After her second fall, she was strapped to a gurney and pulled along a bumpy sidewalk through a snowstorm to an awaiting ambulance. She was taken to the emergency room at New York's Lenox Hill Hospital. Ten hours later, she was assigned to a bed. She stayed for three days before being transferred to another hospice, where she died minutes after she arrived. If my father hadn't redirected the ambulance driver who took her from Lenox Hill to the second hospice, she would have died in the back of a van headed in the wrong direction.
At each stop along the way, my grandmother was handed off to a new set of doctors, nurses, social workers, and case managers. Again and again, she was poked and prodded and tested and assessed. At the first hospice, her health initially seemed to improve, so she wasn't sick enough to stay. But in assisted living, she declined, precipitously, so was too sick to stay. At Lenox Hill, she didn't need the ongoing treatment that would warrant taking up a bed. So she was punted from place to place, always either too close to death or too far from it. It was a pointless nightmare: a Kafkaesque labyrinth of doctors and hospitals and paperwork. When she came out of her semi-conscious state in her room at Lenox Hill, one of the first things she said was, "Why aren't I dead yet? Can't we just get this over with already?"
Until her last few weeks, my grandmother had enjoyed a long, full, fiercely independent life—the kind of life, in fact, that many people would envy. Despite being legally blind, she lived alone in Manhattan, visited museums regularly, took the bus all over the city to meet friends for lunch, and went to Shakespeare in the Park and lectures at NYU. One Friday night a few years ago, I called her and got the answering machine. When I didn't hear back, I called again, and then, as I began to get nervous, again. Finally, around 10 p.m. she called me back, laughing. She'd been out drinking wine with her friends on the rooftop of the Metropolitan Museum of Art.
Though we were separated by six decades, in some ways we were a lot alike. I moved to New York because of my grandmother. She taught me how to make an omelet like Julia Child, gave me an appreciation for red caviar, showed me how to tie silk scarves, and introduced me to the magic of what she called the "golden hour"—that small slice of the early evening when people have turned on the lights in their apartments but haven't yet drawn the blinds. At dusk, during that golden hour, we used to take walks through Greenwich Village and peer up into the stately townhouses that lined the side streets. I adored those moments. I adored her.
She was not some doddering cliché of elderly living. She was astoundingly brave. She learned to use the Internet at age 85 so that she could send e-mails to relatives in Florida and read Frank Rich's column online. She was also blunt and unsentimental on the subject of death. She believed in the circle of life, and often joked that she would come back as a petunia. A couple of times she tried to prepare me for the possibility that I might one day discover her body in her apartment. She told me that if it happened like that—if she died quietly, peacefully, as she went about her day, or, even better, in her sleep—it would be a blessing. At the time, the idea terrified me. Now it seems like a dream.
When she was diagnosed with terminal cancer in the fall of 2007, my grandmother set about preparing for her death. She finalized her will. Together, we picked out charities whose missions she supported and she gave them sizable donations. Last fall I hosted her final Thanksgiving dinner, and nobody at the table, least of all her, shied away from the truth: this would be her last family gathering.
By then, she had gone through chemotherapy, radiation, and a colostomy—all measures that the doctors assured us were, for various reasons, considered "palliative": we all knew she couldn't be cured, but the doctors insisted that these painful treatments would make her last days more pleasant and possibly cede her a little more time. She endured all of it with her typical steel-jawed strength. But by Christmas, she was frail and weak and could barely make it around the block. Her vision was almost entirely gone. She began lamenting how long it was taking to die. And her mind, which had stayed vital far longer than her body, was beginning to slip. She grew paranoid and snappish. When my father and I first decided to bring her to the hospice, it was because she had become convinced that we were watching her through her television set. We later discovered that she had cut wires all over her apartment and tried to change the locks.
When you've lived to be 91, death is not untimely. It is not a tragedy. And my grandmother's death, in particular, should not have been so cruel. Money was not an issue. She had great insurance, and enough savings to pay for anything that Medicare and her insurance company would not. She had signed all the right forms. And she had the support of her family to die on her terms, as peacefully as possible.
Yet there was nothing peaceful about her death. She was forced to endure exactly what she had been so afraid of. During respite care, at the assisted-living facility, and especially at the hospital, my grandmother was treated like a problem to be solved, not as an elderly woman who had had enough. Because of the way her health improved, then so quickly declined, and because the system is set up to save people, not let them die, those last few weeks became needlessly tragic. They were also—and this really would have made my grandmother irate—enormously wasteful. Tens of thousands of dollars were spent on care and treatment: the ambulance trips alone averaged $500 apiece; the first visit to hospice cost more than $10,000; and the bill for three days in Lenox Hill came to $36,772.43, not including visits from doctors. All this for a 91-year-old woman with terminal cancer and no wish to hang on.
Last week I was back at her apartment, sorting through some of her things, when I opened a bag and was hit with a smell so intense I reeled backward. It was the smell of my grandmother dying, of her sickness and cancer and final days. It was a bag full of the pillows from her bed. As if possessed, I ran to the building's incinerator and one by one shoved each pillow, still in its pillowcase, down the chute and into the black. Immediately, my ancestral thrift hit me: throwing away perfectly good pillows was a silly, wasteful thing to do. Self-indulgent, my grandmother would say.
I'll probably always feel a certain amount of guilt over what happened to her, over my inability to give her what she wanted. But even now I don't know what my family could have done differently. We tried, again and again, to push for the absolute minimum in treatment during those last weeks. I asked, again and again, for nurses to give her as much morphine as they could so that she might finally stop thrashing around on her bed. But it's hard to tell strangers whose job is to keep people alive that you actually want your loved one to just die already. And it's brutal to say it dozens of times, to dozens of strangers, who don't really seem to be listening anyway.
There is, in retrospect, one moment I wish I had handled differently. After her second fall in the assisted-living facility, I noticed that her left leg was puffy and swollen. I told the on-duty nurse, who called, of all people, a podiatrist, who diagnosed her with deep-vein thrombosis. The staff at the facility insisted that treatment was considered palliative, and that it was necessary, and that they wouldn't be able to treat her there. They also promised us that if we brought her to Lenox Hill, we could avoid the emergency room and get checked directly in to a bed. None of that turned out to be true. And because of it, for a few minutes, my grandmother lay on a gurney on the street in a snowstorm.
One of my coworkers at the time had a habit of quoting, over and over, an adage that she thought might give me comfort. "You can't make it good, Jesse," she would say. "But you can make it rich." She was voicing a sentiment common in this country. We want to treat death with a kind of reverence—with awe and solemnity. But for many of us, the truth is that it's not deep, it's not rich, it's not meaningful. It's just ugly, especially when it's prolonged for no good reason. Who are we protecting in moments like these? Who are we helping? Who are we thinking of? Not me. Not my father. Certainly not my grandmother.