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New Rituals and Celebrations of Life's Passing
By Denise Carson
UNIVERSITY OF CALIFORNIA PRESSCopyright © 2011 The Regents of the University of California
All rights reserved.
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?"
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 their prognosis, said Robert Burt, a professor at Yale University and author of Death Is That Man Taking Names. Physicians pressed all kinds of extremely invasive and incredibly painful treatments on patients with no realistic chance of success, he said. As a consequence, people lost their autonomy and suffered miserable, intolerable pain in their last months of life.
Nicholas Christakis, a physician and sociologist, studied medical prognoses for twenty years and characterized the "structured silence" around death as part of the daily rhythm in medical practice in a book entitled A Death Foretold: Prophecy and Prognosis in Medical Care. Physicians tend to discuss a grim prognosis only when it's unavoidable, and more often than not they overestimate survival both to themselves and their patients.
Dr. Elisabeth Kübler-Ross, a physician and a pioneer in the death awareness movement that started in the 1960s, exposed the inflicted abuses on terminally ill patients living in hospitals in the book On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families, published in 1969. She constructed the five stages of the death and dying model that provided an inner lens to view the dying experience as a psychological, not just a physical one. She taught us that with support and an inward journey of self-reflection, the dying person could reach "acceptance." She insisted on forgoing the "structured silence" in favor of honest dialogue between patient, physician, and family.
In 1972, Dr. Kübler-Ross testified at the first national hearings conducted by the U.S. Senate Special Committee on the subject of death with dignity. Two years later the U.S. Senate introduced the first hospice legislation. Hospice care adopted the model of "holistic care" to treat all encompassing physical, emotional, spiritual, and existential pain. Hospice/palliative care provides the family with an interdisciplinary team—a physician, a nurse, a social worker, a chaplain, and a volunteer aid—to support the patient at home. Though the U.S. Senate passed the Hospice Medicare benefit that stipulated patients could decline all life-prolonging treatments and have a six-months-or-less-to-live-prognosis in order to receive hospice in 1978, the "structured silence" impeded hospice from reaching patients and their families. So even in 1987, the year my father faced a terminal illness, hospice aided only 177,000 dying patients.
Dr. Diane Meier, director of the Hertzberg Palliative Care Institute at Mount Sinai School of Medicine, clearly has witnessed "a sense of unreality and cognitive dissonance" veiling the deathbed.
"Patients and families are feeling like they can't trust their own eyes," Dr. Meier said. "A patient can feel themselves getting sicker and sicker and the family sees that there is progressive decline, but none of the doctors are talking about it. The patient and family start to feel as if they are losing their minds. 'Is what we are seeing wrong? And if it is right, then why aren't the doctors saying anything about it?'"
A VEIL OF CONTRADICTION
Needless to say my father's doctor responded similarly on many occasions. "He's young, he's strong, and he's going to make it." If my father's doctor believed he would make it, why should we believe otherwise?
He was young and he was strong.
When I asked Brenda questions about my father's cancer, she said, "Everything is going to be okay, honey." All the information received from Brenda contradicted my own eyes. I searched for other ways to find out the truth. Bordering obsessive-compulsive behavior, purely out of survival, I sought out the real story to cope with a stifling fear. Ignorant bliss and denial didn't work for me.
On Saturdays at my dad's house in La Verne, Brenda often perched on the last barstool in the kitchen and talked for hours on the telephone to her mother and sister in Texas. She was oblivious to me sitting on the couch watching television. In stealth mode, I'd flick through the channels and reduce the volume when her voice lowered to a near whisper. I listened to her unfold the week's top stories. They were detailed, perilous, and not sugarcoated. I used the information I gathered to ask her pointed questions about the two more tumors growing in his liver, the CAT scan on his pelvic area, and the tumor growing in his lungs. While other kids in junior high chose to do their book report on gymnastics or NASCAR, I elected to explore this elusive enemy. I checked out a cancer book from the school library. I was inquisitive to the point of annoying. Often Brenda would hush me from asking questions.
"I don't want your father to hear," she'd say with tears streaming down her face. We all had to respect this code of silence.
BREAKING THE CODE OF SILENCE
Twelve years later, my mother and I sat in a research hospital on the USC campus, just across town from UCLA. I wanted to remind her that by signing the experimental chemotherapy papers, she chose "quantity," but I couldn't. The doctor gave her the sliver of hope she'd been waiting for. I wanted to tell her once you hop on the chemotherapy merry-go-round, it becomes addictive. They'll treat you till you die. An ominous shadow of the past eclipsed any glimmer of hope as I watched her sign the papers.
The following week, we walked into the Day Hospital, which struck me more as a laboratory. All these human specimen stations equipped with a recliner, television, and IV pole. As the poison entered by mother's veins, I was haunted by visions of Mom's face hovering over Dad's deteriorating body. Mom suggested I interview her during our downtime together. I defined eight hours in hospital for chemo as downtime.
The last time I conducted an interview with someone near death was in 1997 for my college newspaper. It was liberating speaking openly and publicly about death for the first time with a group of young men dying of AIDS in a Long Beach hospice. They fascinated me because they could articulate living with a terminal illness. Their rapidly aging faces, thrush-covered mouths, and emaciated bodies didn't put me off. Instead, I was strangely comfortable in their company. I'd never spoken to my father about fighting a terminal illness. As a journalist, I could vicariously ask these questions and reach a deeper understanding of the choices Dad made in his last days. My family and friends never talked about the imminence of his death. The denial bothered me most, his denial and the collective denial of death in America.
Still, it wasn't until my last year of college that I found a group of healthy individuals to discuss this social taboo. The course was called the Sociology of Death and Dying. I learned about grief and Elisabeth Kübler-Ross's stages of death and dying—denial, anger, depression, bargaining, and acceptance. I began to recognize my own invisible handicap, unexpressed grief from which, unfortunately, many Americans suffer. Grief, a primal response to death, has hardly the conducive environment for expression in our death-denying and grief-avoiding culture.
Philippe Ariès, the social historian, describes this forbidden death attitude as a strangling of sorrow and its public manifestation that consequently forced people to suffer alone and secretly aggravating the trauma stemming from the loss of an intimate family member or friend. The forbidden death, a cultural construct designed by Americans, according to Ariès, also informed us that children shouldn't be exposed to death and that parents shouldn't cry or show emotion in front of the children.
I unknowingly rebelled against this destructive silence in my first interview and subsequent interviews in the chemo lab with my mother. I asked how she defined death. She gave me some heavenly metaphors about the soul passing on to another time and place. When I asked her how she defined quality of life, she said, "I can now look at life as a gift. If I can talk to people, I can smile at people, I can interact with others, then life can be good."
We discussed her diagnosis, proximity to death, and decision to enter chemotherapy. Then I decided to ask some open-ended questions to get her to reflect on her life.
"Okay, let's take a look at your life from day one to now. Are there any memories that stand out in your mind that you want to reflect on?" I asked.
"My divorce," she said.
"Why is that?"
"As soon as you asked that question, I remembered him telling me," she said.
"That's the most significant moment in your life?" I asked, trying to disguise my bruised ego. Her answer stung. It felt as if she bit me hard on the face. I thought she might say, "The moment I first laid eyes on you after you were born."
Her reminiscence spiraled downward into a grim discussion about working seventy hours a week at First Interstate Bank in downtown Los Angeles for two and half decades. She confessed to becoming a workaholic and then recounted, in excruciating detail, the demise of her banking career when she was taken hostage at gunpoint for forty-five minutes during a bank raid. Then, nine months later, she was caught in another hostage crisis with a gang of gunmen. She wondered if these searing moments triggered her body to turn against itself. Cancer essentially was her own malignant cells attacking the healthy cell tissue.
That interview certainly set the precedent. We shed the mother and daughter roles. When the tape recorder was on, I was the reporter and she was my source. She chose not to shield me from her true thoughts like most parents, or at least mothers, might. Likewise, I chose not to pussyfoot around her. I wasn't deterred—quite the contrary, her candor intrigued me.
I asked her to take some time off work between chemotherapy regimens and return to England to visit our family while she was still relatively healthy. She refused. My fear of losing her evoked an urge to build a reservoir of memories that I could tap into during her inevitable absence. The oncologist said she'd be on chemotherapy for the rest of her life, but for some reason she translated that to mean her life was indefinite, citing that some people live on chemotherapy for eight years. My mother was a calculated realist, yet that rational person seemed to vanish in the fight for survival. Her hair and long eyelashes fell out followed by her eyebrows, and her taste buds for her favorite "meat and potato burrito" dried up. The nausea steadily increased as the toxicity levels rose in her body.
Excerpted from Parting Ways by Denise Carson. Copyright © 2011 The Regents of the University of California. Excerpted by permission of UNIVERSITY OF CALIFORNIA PRESS.
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Table of Contents
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,
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