Sunday, December 15, 2013

A Good Death, Described

Three years ago, this blogger took up a death watch as his 92-year-old mother was moved to hospice care. Then, because of misdaignosis by a supervising hospice nurse, and ambulance took her some distance to a nursing home. And there, after a week, my mother breathed her last. Now, this blogger hopes that his children and grandchildren outlive him and — when the time comes — this blogger will go to sleep one night and not awaken in the morning. The first prayer this blogger learned — at his maternal grandmother's knee (and other low joints) — was a bedtime prayer from The New England Primer:

Now I lay me down to sleep,
I pray the Lord my soul to keep,
If I shall die before I wake,
I pray the Lord my soul to take.

However, this blogger wishes for simple "No-Wakeup" call instructions in his last sleep. As for the theology, not so much. If this is (fair & balanced) thanatophilia, so be it.

[x Lapham's Quarterly]
The Art Of Dying
By Gayatri Devi

Tag Cloud of the following piece of writing

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“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.

A day later, Wednesday, the bleeding stopped, and Jane was drinking only water. She smiled faintly when I came in. When Jane had her first stroke, paralyzing her leg, I marveled at the spirit in her as she worked her way through rehabilitation. When she discovered that she could not walk without help, she opted for a wheelchair over a walker.

“Only old people use walkers,” she said. “Anyone can use a wheelchair.”

Now there was no fight in her, and she lay draped like a piece of fine and faded fabric, her slight body not denting the contours of her bed. The medieval Moriens lay in the hard bed of the time, with sharply folded sheets, a visibly formal approach to death. And yet, it is us, of the plush mattresses and the soft, silken sheets, who are rigid in our approach to death, whisking it away into hospitals and institutions, hiding it far from home.

I was more prepared today than I was on Tuesday, having read a great deal of medical literature the previous night.

“How are you doing?” I said.

“Cramps, a lot of cramping,” Jane said, holding her belly, her face tightening with each abdominal spasm.

“I am going to put you on a bit of morphine,” I said, like I was used to saying such things, announcing to dying patients that I was going to put them on a drug named for Morpheus, the god of sleep, descended from Thanatos, the god of death.

“Just a little to help with the cramps,” I said. Steve, to my relief, did not protest my recommendation.

The Moriens was assured a place in Heaven by succumbing to illness and physical suffering while resisting the lure of a cure, which was the devil's temptation and against God's wishes. Among the intricate woodcuts of the Ars Moriendi, who would Steve and I be? Would I be an angel ushering Jane into heaven by allowing her to die? Or was I a devil tempting her with pain relief to ease her physical suffering? Would Steve be the devil for demanding a cure?

And from the perspective of the Hippocratic Oath, that Guide for Good Physicians, who would I be? Was I walking the right line between treatment and therapeutic nihilism? “I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect,” swears the physician taking the Oath. Was I, in prescribing morphine to a dying Jane, abiding by this Oath?

By the third day, Thursday, Jane was barely speaking. Her sons, Bill and Ted, were there with their wives, their children milling around, Jane's favorite grandson watching television from the couch. The mundane activity felt curiously comfortable and more palatable than the clinical sterility of hospital death scenes.

Marta poured her twenty years of devotion into Jane, fluffing up her hair, carefully applying eye shadow, rouging her cheeks. The cosmetic coloring only heightened the pallor of the skin underneath. Undaunted, Marta turned on Lulu, brushing her lush coat to a high sheen, tying a little burgundy bow to hold her black and white fur off her face. Sam lay propped up with pillows on his side of the bed, in a velvet dressing gown over his pajamas, exhausted from the long day into night into day into night. It was a very large bed with tassels, as carefully made up by Marta as Jane was, with the damask bed linens tucked in just so.

Jane's third daughter, Tess, arrived on Friday, the fourth day. Jane was refusing water and sucking weakly on ice cubes that Marta placed between her parched lips. Her skin was drier, but her heart still thumped steadily in her chest. Her breath was clear, her pulse strong. “Oh God!” I thought, what if I had been wrong in going along with Jane's wishes? If she was so sturdy of constitution, perhaps I should have insisted on stemming her bleeding? But it was too late, the die was cast.

Jane awoke briefly and looked around with eyes that were no less the inquisitive despite the dullness in them. She greeted her children by name, and ruffled the hair or patted the head of her grandchildren, as each one came dutifully up to her, fidgeting, bored. She took my hand.

“Nice color,” she said, looking at my nail polish. She never spoke again.

“How long?” was everyone's question once Jane was asleep, presumably out of earshot. This idea of someone not hearing when asleep or unconsciousness worries me. The muscles of the human ear are the only muscles, aside from those in the eye, that are not paralyzed when we dream.

In my best approximation of a reassuring, priestly voice, I said, “Soon...Not long now.”

It was clear to me that Jane and I were holding people up. Everyone had places to go, things to do. No one had time to sit around waiting, especially waiting for someone to die. “To want the dying to be over is not the same as wanting someone dead,” a colleague told me many years later. Because I wanted Jane's dying to be over, and because I was not then aware of this fine distinction, I felt only great guilt.

Saturday morning found Jane still alive, which meant I had to face all those people again and pretend as if I knew what I was doing. I was filled with dread. Preparing to leave my apartment, I asked myself, What should I wear? It was a weekend day, and I didn't want to be formal, yet the occasion was not casual. I tried out a dozen outfits, thinking, "Which one would Jane like best?” Nothing seemed just right. I was exhausted from not sleeping, from the daily worrying and the interminable waiting. I was exhausted from all my internal battles with the Good Death and the Hippocratic Oath, by what it meant to be a good physician. I was exhausted by all the expectations, from Jane, from her family, from Steve, from Marta, from Lulu, from myself.

I knew it was unprofessional to cry over a patient and unbecoming of a physician. Clinical detachment is valued in medicine. I knew it was frowned upon to love and care for a patient, to let a patient's illness and fight become in some way one’s own illness and fight. Yet, my human attachment to Jane helped me view things from her perspective as well as from that of the physician, which I believed made for better doctoring. After all, like all doctor-patient relationships, ours was a human relationship first. In this, her last act of courage, Jane was asking something from a friend.

I allowed myself, finally, to break down, for it’s true that with every patient's death, her doctor dies a little. Eventually, I composed myself and went to see her. I don't remember what I finally wore to her noisy, lively, crowded death chamber.

The noise stopped, when I, this angel of death, entered the room. In the Ars Moriendi, the angels wore halos and had many fellow angels to keep them company. Jane and Lulu were my company and neither was being very helpful. I busied myself with Jane's dying body as I felt her living pulse leap up to greet my disbelieving fingertips.

“Jane,” I whispered to her, silently, urgently. “You have to help me here. I can't keep this up too much longer.”

Jane's eyes had shrunk into her face, her lids were closed and when I lifted them, her corneas had an opaque covering like a spider's web. She looked like she was wearing one of the death masks I had seen in pictures. Her skin was tight and pulled away from the face, the lips dry and peeling. I dabbed some Vaseline on Jane's lips. What else could I do? I didn't know; after maybe half an hour of doing nothing, I went home.

I barely slept that night, finally drifting off toward early morning. The sun flooded my bedroom, jolting me awake so that it was already eleven o'clock by the time I got to Jane's apartment. She died just a few minutes before my arrival, almost as if she timed her death in her typically considerate manner. It had been six days from the beginning to the end of this, our last journey together.

Everyone seemed relieved when I “confirmed” Jane's death, but why do we need doctors to confirm deaths? Even Lulu knew, and she was lying on the pillow next to Jane, whimpering a little. With surprise, I observed that although Jane's eyes were as closed and her lips as sealed as yesterday, somehow, in the freshness of death, her skin was less drawn, more yielding and more alive.

She lay as she often had before, greeting visitors from the comfort of her bed, visitors who arrived at all times of the day, unannounced and always welcome. Jane had more friends than anyone I have met, either before or since. How many times is the nicest room in a home, the “living” room, cordoned off to languish in neglect, never lived in? In Jane’s home, the best things and the best rooms were treasured daily, enjoyed in life, and now, in death. The obvious irony, of course, is that even as so many of us are afraid of dying alone, when is death ever not a solo act, the one unavoidable virtuoso performance of our lives? In the midst of all of us, Jane died alone.

Two men from the funeral home alighted as if from nowhere, in charcoal gray suits and polished wingtip shoes. They wrapped Jane in a white, coarse cotton cover, nightgown and all, and expertly rolled her body onto a gurney that they brought up to the exact height of the bed. I followed these men to the elevator, while her family stayed behind. When we reached the elevator, with a quick release of a lever, the gurney became perpendicular and Jane was magically standing straight and tall, firmly strapped in place, inside the narrow elevator. For the first time in years, she was upright, like Lazarus, but not truly risen. I thought of the countless trips when she had stood in that very corner, in one of her impeccable suits. I watched the elevator door close on Jane standing in the middle, already ghostlike, her face and body shrouded in white cloth, a man on either side. And just like that, she was gone.

Back in her bedroom, plans were being made, for the funeral, for trips home and for the future. The waiting was over and everyone thanked me. Even Steve hugged me. Because Jane died a good death, no one cried, and the air was almost festive. I half expected to hear the sound of a champagne cork going off any minute, glasses raised to cheer a life well lived.

What made Jane's a Good Death? She knew her death was nigh and she stayed in control, dying where she wanted, when she wanted, with those she wanted, saying her goodbyes. She died without pain and with dignity. In the end, she died the way she lived, without apologies and with grace. Ω

[Gayatri Devi is a neurologist and the Director of the New York Memory Services. She is board certified in Neurology as well as in Pain Medicine, Psychiatry and Behavioral Neurology. Devi received her M.D. from Grace University (Belize) and was an Intern at the SUNY Health Science Center-Brooklyn, and ultimately Chief Resident in the Department of Neurology of SUNY Health Science Center-Brooklyn. She also was a Fellow in Behavioral Neurology at Columbia Presbyterian Medical Center in New York City. Since 2005, she has been a Clinical Associate Professor in the Departments of Neurology and Psychiatry of the NYU School of Medicine. Devi has written Estrogen, Memory and Menopause (2000), What Your Doctor May Not Tell You About Alzheimer’s Disease (2004) and A Calm Brain (2012).]

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