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Acknowledgments, ix,
Prologue, xiii,
Introduction, 1,
PART I END-OF-LIFE CELEBRATIONS AND PRE-DEATH RITUALS,
1. Her Choice: Two Paths Leading to the Same Destination, 11,
2. Living Funeral: Celebrating the End of Life, 33,
3. Her Life Review: Reliving the Past in the Present, 60,
4. Legacy of Memories: Telling Life Stories and Last Wishes, 79,
5. Her Season of Lasts: Traditional, Seasonal, Communal Rituals, 103,
6. Oral Ethical Will: Video Recording Valuable Last Words, 123,
7. Her Living Wake: Reminiscing and Farewell Party, 144,
8. Vigil: Holding Hands at the Eleventh Hour, 160,
PART II POST-DEATH AND MEMORIALIZING RITUALS,
9. Her Twenty-First-Century Memorial Service, His Twentieth-Century Funeral, 183,
10. Home Funeral: Eco-Friendly Way Out, 206,
11. Holistic Approach: Design-It-Yourself Funeral and Cremation Witnessing, 228,
12. The Living Unveiling: Technology Innovates Memorializing, 258,
13. Her Truth: Finding Life after Death, 274,
Notes, 295,
Bibliography, 305,
Her Choice: Two Paths Leading to the Same Destination
In the waning last year of the twentieth century, I followed my mother through the double glass doors of Kenneth Norris Cancer Hospital on the University of Southern California campus. The wilting figures seated in the lobby assaulted my senses. We'd entered a departure terminal for death. I choked back my horror and threw my arm around her instead of turning to run for the exit. She made many solo journeys in her life, but this wouldn't be one of those.
"Thanks for coming with me, my love," she said. Mom appeared vigorous as she reverberated the lobby with the rhythmic click of her high heels, which added a few inches to her nimble five-foot-two physique in a business suit and blond bob.
My mother's gastrointestinal oncologist had summoned us late that afternoon. A nurse escorted us into a stark room. We sat in front of an oak desk. The week before Mom had returned home from this office repeating her death sentence—three to four months left to live. They gave no curative option after twelve arduous weeks of reconnaissance. The USC team only offered to palliate the symptoms.
The doctor swept in and sat behind the desk. She opened Mom's flimsy medical file and launched into a scripted spiel about an experimental chemotherapy treatment that she thought could prolong my mother's life. Skeptical, I interrupted the doctor's speech about mixing two kinds of chemotherapies to test the toxicity levels in humans.
"This seems unsafe," I said.
"Denise, this may not help your mother, but her participation in the study will help save the lives of others," she said.
I winced at her casual tone.
"My mother doesn't want to be your guinea pig," I quipped.
The doctor moved to corner of the desk and placed her hand on my shoulder to gain pseudo-intimacy.
"With this experiment, we're killing two birds with one stone; it's a chemo for gastrointestinal and ovarian cancer," she said. "It's exactly what we need to treat your mother's cancer."
I burned with anger, but I couldn't stop the tears. My mother looked at me. I wasn't the ideal pillar of support that I hoped to be for her.
"We need to think about it," Mom said. "My kids have already been through this with their father. My goal is to have quality not quantity of life."
EXTENDING LIFE OR PROLONGING DEATH IN THE TWENTIETH CENTURY
I remembered the first time Mom had uttered that string of words. It was the spring of 1987. I was just twelve years old. We walked side-by-side toward the elevator on the ninth floor of UCLA Medical Center. My father, Richard Carson, was a local by then on that floor. In the cancer unit, he appeared out of place. At just thirty-seven years old with a marathon runner's body and a full head of thick, shiny black hair, he looked so invincible to me compared with other residents, who looked more like great-grandparents.
Mom had just visited his room. They had been divorced for five years, and he had remarried. Mom had little contact with my father during his illness, yet she felt it necessary to talk to him that evening when she came to pick me up from the hospital. I had been staying at a family residence, similar to a hotel, on the UCLA campus in Westwood for the weekend in order to visit Dad while he was undergoing aggressive daily radiation and chemotherapy.
She walked into the room to see a skeleton of the man she once called her husband. He'd lost a lot of weight since their marriage. His skin hung on his bones. He wore a white V-neck T-shirt and hospital pants. His bronze complexion was now tinged yellow, a sign of his failing liver. Shortly after his thirty-fifth birthday, they'd diagnosed him with colorectal cancer that spread to his liver.
"Have you had a will drawn up?" she asked.
"Yes," he said.
"Do you think you can write a letter to the kids, tell them about what your expectations of them are in the future, tell them about you?" she asked. "Especially for Ryan—he is still very young." Ryan, my younger brother, was four.
Dad didn't respond.
"Or even make a tape or video of yourself for them?" she added.
"Lin, I'm going to beat this," he said. His face twisted from the pain as he tried to sit up in his bed. They exchanged a few more words and then my Mom emerged and grabbed my hand. I looked up and saw tears in her eyes, but they disappeared before rolling down her face.
"Did you have fun, my love?" she asked.
"Yeah, Mom," I said.
"You know, if I ever get cancer, I wouldn't go through what your father is going through," she said. "I would let nature take its course. I would choose quality over quantity of life."
In his last days at UCLA Medical Center in 1987, my father became a young, human guinea pig willing to "green light" every experimental treatment. The "stabbing knives" in surgeries, the "bullets" of chemotherapies, the countless zaps of radiation—no matter how invasive or debilitating the side effects, the treatments lured my father into believing he was fighting for his life. They sucked him dry and left him with a porous body riddled with tumors.
Right before my naïve eyes, I watched him deteriorate. He'd routinely run three miles a day and competed in the Los Angeles Marathon. Just the year before, he launched his own business, Carson Medical Management, a medical billing company. He spent most of his career toiling as the director of a local hospital, St. Bernardine Medical Center, but he never tired. My dad was like the neighborhood doctor, our own Patch Adams. His silly jokes and goofy faces could turn around anyone's gloom. It was terrifying to see him slow down, become a patient, and fade from my daily life.
As his body broke down, the doctors replaced his internal organs with tubes and metal medical devices that transformed him into a half-man/half-machine. With each new treatment Brenda, his wife, asked his physician, "Is Richard going to make it?"
STRUCTURED SILENCE
In the late 1980s, when my father cycled in and out of the medical system, problems of over-aggressive care stemmed from the physicians' unwillingness to speak of dying and tell patients the truth about...
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