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A Piece of My Mind
February 4, 2009

The First Wake

Author Affiliations
 

A Piece of My Mind Section Editor: Roxanne K. Young, Associate Senior Editor.

JAMA. 2009;301(5):467-468. doi:10.1001/jama.2009.61

I have felt close to many patients, beyond the usual pleasant rapport I share with them. Mr D, in particular,was always a delight to see and, I am happy to say, a success story. Two years ago I had met Mr D at our first clinic appointment. He was in a wheelchair, rolled in by his wife, who was begging for antidepressants for her husband. Over only a few months, he had been becoming more debilitated, incontinent of urine, and increasingly demented, the latter which his wife mistook for severe depression. He was walking so unsteadily that his arms and legs blossomed with bruises spanning a vast color range, a testament to both the frequency and regularity of his falls.

After his diagnosis of normal-pressure hydrocephalus, he received a successful ventriculoperitoneal shunt. I remember seeing him after his rehabilitation; it felt like I was meeting him for the first time. He had a genteel Southern twang, a real honest-to-goodness twinkle in his eye, and he was constantly making a joke. I began to notice that he always had a comfortable pair of cowboy boots peeking out from under the legs of his jeans. Less than six months after his surgery he was mowing his kids' lawns (whether they wanted it or not, they would laughingly comment). He was unstoppable, a happy man with a great family. A year later still, I would diagnose him with atrial fibrillation. Now that his gait instability was a thing of the past, starting warfarin to prevent a stroke made perfect sense. With his new lease on life, he was a relatively healthy 81-year-old.

But a fall on his porch, after his feeling ill for a day, put an end to that. A large subdural hematoma swiftly incapacitated him, and he never woke up again despite an emergency craniotomy. It was devastating to his family, and it was terribly upsetting to me too, knowing full well I had prescribed the medication that possibly contributed to his death. The day the family decided to withdraw care, I said my good-byes at his bedside.

I hardly recognized him—his face and hands were bloated from the intravenous fluids, his head shaved with a scythe-shaped scar stapled across one side. The twinkling eyes would not open to greet me. I held his hand and even my light touch left dents in his swollen fingers. His wife put her arm around me. We had both been crying.

“Look in the papers,” she whispered. “You’ll know he's gone when you see it in the obituaries.” The family began their vigil, and Mr D died soon after.

His wake and funeral were scheduled for a few days later. I knew I wanted to go. But I felt lost—and embarrassed by my inexperience. I had never been to a funeral or wake in the United States before, even though I was born and raised here. What was I to do? The most mundane and extraordinary questions came into my head. What should I say to the family? Should I wear black? What should I say or think when I saw Mr D in the casket? What time should I arrive? I asked my husband, who is an oncologist, for advice. He recommended I go to the wake and gently talked me through his own experiences, but it did not do much quell my anxiety.

I tried to draw on my only experience, when I was in college, but I hardly felt in control of the situation then. With the flawless timing of the unlucky, my mother had just flown home after dropping me off for a summer language program in Korea, and her ailing father died a day later. Unable to speak much Korean, I was guided at each step of the funeral by my extended family, sometimes arm-in-arm. Even my dress, a stiff paper-white han-bok, was chosen for me. I was dressed, like a child, by the women who dealt with the complicated knots and closures.

“Wake” when it refers to a funerary ceremony means “to watch or guard,” before the next journey. I had always envisioned the waves of water that washed over a shoreline after a boat passed by. But those words struck me with sadness. I had watched over Mr D's health when he was alive. Now I would be part of the ceremony of death. It didn't feel right. After all, prevention is a primary care physician's middle name. Death is the invisible foe that is ever present in the clinic room, at the bedside. When it comes swiftly and unexpectedly, it feels like robbery. I had been given a task to care for Mr D. What if my presence was not welcomed at his wake? Perhaps the family would look at me askance, wondering, “Why didn't she do more?”

On the way to the wake I got lost. It took a ridiculous three U-turns to find the funeral home. I thought Mr D would have been finger-wagging and delivering a sharp joke for me if he knew. “You tryin’ to avoid me or are you just a bad driver?” I laughed out loud in my car, then quickly wondered if it was okay to laugh on such a day.

I walked into the funeral home, not knowing where to put my hands or what to look at. Before I could even get my bearings, I was quickly met by Mr D's daughter. Then other family members surrounded and greeted me. The extraordinary warmth and friendliness and obvious lack of dismal sadness was truly unexpected. In the narthex of the home a large tableau of photographic collages was set up. People were remembering Mr D's ebullient personality and his infinite love of his pet pug, and comparing details of his antics and jokes. Black-and-white photographs, scalloped at the edges, showed a slimmer, younger Mr D, his facial features in their essence before age set it. There were lovely snapshots of his wife, at first holding her babies, and later grandbabies. It seemed the only child Mr D was pictured holding in the collage was his dog. He would have it no other way.

I hardly had a moment alone. I was proudly introduced to anybody and everybody. I felt strangely like a guest of honor, which was flattering but highly uncomfortable. Several family members made a point of thanking me for giving Mr D “that extra year” after he was diagnosed with hydrocephalus. I smiled wanly. One year was not enough. It was unbalancing to see the disparity between what the family accepted and the guilt and helplessness I felt. I was shown up to the front of the chapel where Mrs D was greeting other newcomers, and where Mr D lay in his casket. I hugged her hard and we wiped away tears as we looked upon Mr D. He was wearing a trucker cap, a merry red plaid shirt, and, as always, “with a pack of gum and a pen in his pocket, the way he likes it.” I guessed that at the other end of the casket were his ever-present cowboy boots. I knew what really lay under his hat—I let my eyes blur and tried not to see the slightly slackened skin, the lost glow of his cheeks. I remembered what the cadavers from gross anatomy looked like. And I refused to let their memory mingle with those of Mr D.

I touched his arm but was afraid to put any pressure on his body with my fingertips. I was afraid he would be cold, hard. I was afraid he might even respond to my touch. In my head I told him, “I’ll watch over her for you.” Arm-in-arm Mrs D and I looked down until we were drawn away to greet more family and friends. It really was the last thing I expected, the strange familiarity of being navigated around the foreign environment of a funeral, just as I had experienced in Korea. While we spoke to several people, family members mentioned to me,“You know, this is just how he would have wanted to go. No pain and suffering for a long time. Why, it would have destroyed him if he was ever diagnosed with cancer or something.”

Just as I was leaving, Mrs D pulled me aside one more time.

“Do you know what Mr D said the first day he met you? Well, that is, after he asked me again what your name was, since his memory was so bad . . . ”

“No, tell me,” I asked, curious.

“ ‘Why, that Dr Kang, she ain't bigger than a minute!’ ” We laughed out loud together.

It was an honor to care for him, to be able to celebrate his life with his family and friends. But there remain some bittersweet revelations. After the wake I realized I knew Mr D even better now that he was gone. Had I thought I’d really known him as my patient? How much do snapshots of human interaction in the clinic let us know who we are really treating? And that the choices we make as physicians—even the casual click of a button to prescribe a new medicine—can have the most profound effects on the lives of patients, families, and yes, physicians. Good choices become mistakes that become good choices again, all the while rocking our core sensibilities as caretakers.

My experience at this wake, incredible as it was, will likely not be my last. Perhaps the wake has new meaning to me now. The day we meet our patients—that somewhat arbitrary uniting of two people—our mission begins. We “watch and guard” over them, as best as we can, until finally, and inevitably, we are parted.

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