The phone rang on Tuesday afternoon, it was Jane.
"I am throwing up blood," she said.
"For how long?" I asked. "What color is it?"
"Since this morning," Jane said. "It is bright red."
Jane was eighty-four, and during the three years in which I'd been her neurologist she'd been having what she called the "dwindles". First one stroke, then the next, then a series of small strokes, each imprisoning her vibrant mind in her small body. Incapacitated, weighing no more than a hundred pounds but still in control of her thoughts, she was living in her apartment on Fifth Avenue, ten blocks from my office at Park Avenue and East 76th Street.
"Jane," I said, "do you want to go to the hospital?"
"No," she said.
"Alright," I said, "you know this is serious, it means you will bleed to death. If you stay home, you will die."
"I know," Jane said, "I'm done."
And I knew it too. Even if we successfully treated this new trauma, I knew that Jane herself would be further diseased, further decimated. I was relieved. The last three years had been a long and painful struggle for us both.
When I first met Jane in the autumn of 1998, I was struck by her abundant energy and formidable intelligence, a handsome woman fiercely committed to a variety of philanthropic causes, who dressed in tailored twill and drove, at high speed, a hunter green convertible with cream leather seats. I'm still not sure why she chose me to be her neurologist, a young woman not long out of her fellowship training, inexperienced as a practicing physician, low on the totem pole of the medical faculty at Columbia University.
Why me and not one at the department chairs, the hospital bigwigs? Maybe she regarded me as one of her causes, along the lines of an unconventional modern building that she thought deserving of landmark status. Soon after we were introduced, she had said, "You are going to be something special."
Three months later she said, "Can I have a copy of your book?"
"What book?" I said. And then, of course, I wrote one.
Jane had a way of making things happen, saving beautiful old buildings from the wrecking ball by browbeating donors into donating, legislators into legislating. On that Tuesday afternoon in August I hurried over as soon as I could. Sam, Jane's husband, opened the door. He was a slight man, courteous and old-worldly, dressed like a country squire, his gray hair neatly combed back, the lapels of his jacket lying flat against his chest.
"Steve is here," Sam whispered in the foyer, nodding toward the bedroom. "He wants Jane at the hospital immediately. He wants us to call 911."
"And you, Sam?"
"I am with Jane. She's been just as brave as can be." Sam eyes became watery. He cried each time she had a stroke. He cried when he laughed. In the last few months, just the mention of Jane was enough to get Sam crying. But Sam also cried when the stock market hit a new low and when he saw a beautiful piece of art. Tears came easily to Sam, and gloriously, unabashedly, rolled down his rosy cheeks as they must have doing since he was a child.
Steve was Jane's plastic surgeon. This being the Upper East Side of New York City, plastic surgeons were as important as neurologists, often more so. Jane, in her pragmatic, no-nonsense way, had had some "work" done in her later years. She saw no need to defend the mingling of the natural and the artificial. Her ability to combine disparate elements into a serene whole was one of her signature and inexplicably endearing features.
I went into Jane's bedroom, a large, high-ceilinged, draperied Fifth Avenue room overlooking Central Park, airy and light despite the period French furniture. Swirling around Jane in this room now was Marta, the maid, Lulu, Jane's silky, energetic terrier, and, of course, Steve. He was wearing a blue polo shirt and khaki slacks, his dark hair slicked back over a handsome, Slavic face upon which quite some "work" had at some time been done. Steve had the type of preternaturally taut, middle-aged body that only good surgical suctioning achieves.
Seeing the buzzing around Jane lying prostate in bed, I felt myself on the set of the Ars Moriendi, the small medieval manual featuring eleven woodcuts on how to die the Good Death. The scenes are more crowded than the main floor of Barney's at Christmas season, teeming with saints, devils and people. The devils slither around and under the dying person, the Moriens, while the saints hover above and around the bed. Relatives and friends run off with the horses in the stable and the fine wine from the cellar of the soon-to-be-dearly-departed.
In twenty-first century America, there is no such "how to" manual on dying. Nor does our state-of-the-art modern medicine offer much help.
Fact: Seven out of ten Americans wish to die at home, die the Good, the Valid, Death.
Jane abhorred whispering, so Steve and I included Jane in our discussion of the mechanics of her death.
Fact: Seven out of ten Americans die in institutions, intubated, infiltrated, invalidated.
"This is a treatable problem," Steve said.
"Yes," I said, "but she is going to be worse off afterward."
We went back and forth like this for half an hour. Jane and Sam listened intently, following the argument like spectators at a tennis match. In the end, Steve acquiesced even though his suggestions were in line with what my hospital colleagues would recommend. What I was proposing was not the medical norm.
I felt wobbly and unsure. Steve had decades more experience as a physician. What if he was right and I was wrong? What if it was wrong to agree with Jane and let her go, wrong to let her die? I had never helped anyone die before. How would I go about doing this? There were many colleagues I could ask to help me help Jane live, but I couldn't think of anyone to call to help me help Jane die. I could, of course, hand her off to a hospice team, an end-of-life, medical clean-up crew. But this felt like a shirking of responsibility, an abandonment of my patient in her time of need, so that I would be spared the discomfort. The opting out seemed to me cowardly.
I told Sam to alert everyone in the family. The time, I said, had come.
"How long?" Jane asked me. I didn't know how to answer the question.
I looked at Lulu, at her perky, twitching ears and her eyes shimmering in moist health. She lay on the pillow next to Jane, occasionally swishing her little tail the way dogs do when they are being looked at. I was trying to see if she knew, as dogs often know things that people don't, but Lulu just kept on peering mutely back at me.
"It could be in a few days," I said. "We will make sure that you stay comfortable."
We? Who was the "we"? In my tentative foray into this new territory of helping someone die, I was waving the flag of the larger medical establishment to reduce my vulnerability and make me feel and seem more authoritative.
"Okay," Jane said, squeezing my hand. The firm way Jane grasped my hand said in so many words that she was putting her trust in the specifics of me, not in the nebulous "we" of established medicine.
Steve's disapproval was like a thick fog in the room. I kept my posture erect as I left, walking very slowly, measuring the pace of my feet and breathing in and out. Once off stage, I sprinted to the elevator as if I was being chased.
More ...
http://www.laphamsquarterly.org/roundtable/roundtable/the-art-of-dying.php?src=longreads
