The coffee shop I frequented was two blocks from the town square, tucked into a quiet backstreet. Inside, I would find my usual table near the window, where I could see the mountain range just peeking over the buildings. I would lay out papers, and books on death and dying, religion and sociology, and begin to work. One overcast morning, a man sitting at a table across from me asked, “Are you afraid of dying?”
I looked up and smiled. “No," I said. “I am afraid of being kept alive.”
*
After twenty years of working in hospitals and watching the many changes that evolved in medicine, I found myself on a different path. Most of these hospitals were new, modern buildings, garnished with corridors of granite columns that towered from patterns of ceramic tile floors. Fine art hung from textured, papered walls. Windows were draped with fabric of vibrant colors. Large wooden doors with chrome handles led to single rooms that resembled a five star hotel. The only things that reminded me I was in a hospital were the IV poles near the bed, or the oxygen flow meters on the wall. I always felt spoiled or pampered working in these places. People came there to get better, and it was rewarding to be a part of the process.
After all those years, I’d moved to a different state. It was the late winter/early spring of 2008, The weather was chaotic. On my first day of work, rain formed layers of ice on the ground. Dark, heavy clouds hung low. My new position here in this hospital was much different from what I was used to. The original building of this "new" hospital was built in 1928, and there had been numerous reconstructions since then. The walls were faded green. The ceiling was yellowed and water-stained. Some of the tiles on the floor were cracked.
I was sitting in an old vinyl chair dated from the 1960’s while a nurse pushed a metal cart past me. The front wheels wobbled, vibrating back and forth, making it hard for her to maneuver. A representative from the hospital walked up to me, introducing herself. She appeared tired, unenthusiastic, almost sad. She guided me through various hallways and rooms, talking as she went. At one point, she stopped, turning to face me. For the first time since introducing herself, she made eye contact.
“I can see that this is much different from what you have done before,” she said. She continued on, not waiting for a response. “It’s like watering the flowers.”
Her analogy stuck in my mind the entire eight months that I worked there. The flowers she was referring to were the patients; we cared for people like we care for gardens. These patients did not get better. This was their home. Most of them were on ventilators. Some had been on these machines for years. A lot of them had feeding tubes. There were a few who’d been diagnosed as clinically brain dead, their hearts still beating, trapping their souls.
I remembered reading a story in Anne Lamott’s book, Plan B: Further Thoughts on Faith. She talked about her experience on the death of her dog, Sadie. Hers was a story to which animal lovers can relate. We consider our furry companions members of the family. I felt the grief she described when Sadie was dying. What intrigued me were the instructions the veterinarian had given Anne. She wrote, “He would walk me through death.” The vet had told Anne that even when a creature is extremely sick, 95% of that being is still healthy, but the other 5% feels so sick that it almost completely overpowers the healthy portion. The veterinarian goes on to tell Lamott that one day, Sadie may crawl under a bed and not come out, that animals feel safer dying at home. This, I believe, is true of humans too. Years ago, before people went to the hospital to die, before hospice, we cared for them at home.
Brenda Ueland writes in her book, If You Want to Write: A Book about Art, Independence and Spirit , of George Richmond, an artist devoted to William Blake. Richmond wrote of Blake's death in a letter: “to him death was like going into another room. On the day of his death he composed songs to his Maker and sang them for his wife to hear. Just before he died his countenance became fair, his eyes brightened and he burst into singing of the things he saw in heaven.”
*
Over the years, in both hospitals I worked in, I observed, talked, and listened to dying patients and their families. Many times I would be in the room when the last breath was taken. Each individual reaction was unique. Some family members would sit quietly, kiss their loved ones good-bye, and calmly walk out in peaceful acceptance. Other times there was wailing, screaming, as they held onto each other to prevent anyone from collapsing onto the floor. I observed various religious and cultural beliefs. During one particularly beautiful moment, I watched and listened as a granddaughter played her violin as her grandmother passed on. The most important difference between the way each person accepted death was the quality with which they had lived their own lives.
I began to feel the need to serve as an advocate for the dying. Henry David Thoreau wrote in Walden: "I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived."
There has been a gradual change in society’s acceptance of death and the process of dying. More and more often I heard from family members the words, “Do everything possible.” It didn’t seem to matter if the dying patient was diagnosed with terminal cancer. It wasn’t important the age or the patient's wishes. Families and loved ones were demanding more time, more painful procedures, more, more, more. They leaped and grasped for miracles.
Back in 1911, a woman named Louise B. Wilcox wrote in her article, “Facing Death,” (Harper’s Bazaar): “Perhaps if we were less centered upon our own happiness, grief over the loss of our beloved ones would not be the terrible thing that it is.” Today it isn’t just dealing with grief. It is letting go and allowing one to die pain-free and with dignity. After eight months of working in the long term care hospital, I became disheartened. The failing health of these patients was unceasing. Their afflictions and conditions were eternal. The patients I cared for were not candidates for occupational or physical rehabilitation. Their minds were inactive. Their bodies were debilitated beyond mending. They were diagnosed irrecoverable. Eventually, I left the facility and returned to acute care.
I believe in the power of prayer. I have prayed with patients and family members. I have prayed quietly, alone. There were grievous moments when I prayed over a dying child.
*
Dr. Lawrence J. Schneiderman, MD, is a Professor Emeritus at UCSD Medical School. He has been a visiting scholar and professor at institutions in the United States and abroad. He has done work in ethic consultations: a way to help health care professionals, patients, and surrogates come to a decision about medical treatment. He is author of the books, Embracing our Mortality: Hard Choices in an Age of Medical Miracles and Wrong Medicine: Doctors, Patients, and Futile Treatment, and author of many papers regarding the dignity and care of dying patients.
Lawrence Schneiderman writes in his book, Embracing Our Mortality: Hard Choices in an Age of Medical Miracles, that "physicians, social workers, nurses, volunteers, chaplains [...] are, for the most part, a remarkably cheerful bunch of people who are open to so many large and small pleasures of living." Schneiderman goes on to say that he believes this is because that particular group of people
have come to know the alternative. Not just death, but a more inhumane form of death. Not living, but being kept alive. [...] Our feelings are not based on the banalities and false hopes that fill the books of New Age gurus. They are grounded in a deeper, more enduring, and satisfying reality. We know someday life will end. Therefore, every day, every moment, we appreciate it all the more.
*
On one particular day I prayed for a son to be able to come to terms with his mother’s dying. The son knew of his mother’s wishes to die with dignity, and pain-free. She'd had all the paperwork done so her son would not have to make those heavy decisions. A hospital Chaplain and I were dealing with the family on two different levels: I was wrapped up in the futility of the medical treatment, and the Chaplain’s position was as their spiritual guide and healer. The Chaplain and I disagreed on the best way to present the mother’s condition to the son. I felt forwardness was needed, but my words were going unheard. Too many times in my career I have felt that hope was given to a patient and a family member, when truth would have been a better approach. Miracles should be left to God, not medicine. I stood in the hallway where the Chaplain was standing.
“What should I tell the son?” the Chaplain asked.
I shifted the lead apron I was wearing, and looked toward the door to the family waiting area. I imagined the son sitting there in anguish and guilt over the decisions he had made. It would now be only a matter of time until his mother passed on. The Chaplain cleared his throat and shifted his weight back and forth from one leg to the other. My mind knew what needed to be said, but my heart wouldn’t let the words come out. Again, he cleared his throat, softened his stance, and took my hand.
“I don’t always agree with the family's decisions either, but sometimes we have to do what the family wishes.” he said.
“Why does he want us to do this?” I asked him.
“She was a DNR, she has metastatic cancer, congestive heart failure, a history of two coronary artery bypass grafts, and has been immobile, living in a vegetative state in a nursing home.” The Chaplain sensed my sadness and disappointment.
“No one should have to end their life this way.”
The Chaplain moved in toward me and kindly said. “The family is not ready, yet.”
“Well, God is.”
I turned back to the Cath lab as the cardiologist looked up at me and said, “Start compressions.”
*
A time came when I had to face my own mortality. It was my fourth visit to the doctor in two weeks. The first visit was a routine exam and physical. It never occurred to me that I would be sent down the rugged road of testing, prodding, needles, scanning, and ultrasounds. On this particular visit I wasn't led to the usual examining room. Instead, I was taken to a place that was elegantly decorated. The walls were golden with autumn decor. There were paintings of beautiful women throughout different eras. A large overstuffed couch was filled with ornate pillows. A few cherry wood tables held two small lamps. The lamps were the only source of light, replacing the usual fluorescent lighting in the ceiling. Across from the couch was an upholstered chair. The room was serene and calming, yet, I was nervous.
I thought their intentions were kind, but I felt I might be more comfortable in the exam room. At least there I knew what to expect. The nurse asked if she could get me anything to drink. I wanted to say “tequila," but decided it might not be a good time for a joke. I didn't know where to sit. Was the couch for patients? What I really wanted to do was lie on the floor, close my eyes, and enter a meditation that would take me away from here.
My doctor was a wonderful woman who always made me feel comfortable. If I had lain down on the floor, I don't think she would have been shocked. She was the type of person who would sit right beside me. She was the one, after all, who had sent me on a 2-week journey to hell. There were the medications that made me nauseous, but promised results. The mortifying procedure that would end my pain and the growth of the mysterious mass. All of this followed by two weeks of waiting, not knowing, and mind-racing thoughts. I followed her directions, not because she was the MD, but because I trusted and loved her. She was my friend, my confidant, and mentor.
I sat cross-legged on the couch in that golden room. My hands turned ice-cold. My heart valves were working overtime as I felt my chest vibrate each time they opened and closed. I breathed deeply, pursing my lips against the exhalations.
My thoughts shot off to different places and moments. I calmed my head. I talked to God, looking ahead at the chair across from me as if he was sitting right there. I told him about my bucket list. I told him that I wanted to do everything on it. I told him about my children. Tears pooled in the corners of my eyes, and a tight ball formed in my throat.
The door opened and my doctor came in carrying a cup of herbal tea. She is smiling, I thought, this is good. She sat on the couch beside me, wrapping her legs under her. Immediately, we were in the thick of test results, numbers, procedures. The next step was another biopsy. She looked at me, waiting for a response. I had nothing to give her. I didn't want to say anything. I didn't want to say: " I am okay with this." I knew I wasn’t.
As I drove home, my thoughts went back to the man and his dying mother. I could still see him standing near her lifeless body. Sitting, silently, above her head was a ventilator that had given her breath. Also, now off, was the Intra-aortic balloon pump, a machine that sounds like a heartbeat. It gives off the same flub-dub that you feel when you place your hand on a loved one's chest. None of those mechanical devices would have saved her life. Her own deteriorating health made her a poor candidate for these medical procedures. All that was accomplished was that we prolonged her death. If my health was not going to improve, I was not afraid of dying. Medicine is to restore, to heal. Treatment should never be offered to prolong death. To me, that is a futile goal.
*
With medical treatment and various procedures, I was able to recover. If I had not been able to sustain my life to a qualitative state, I would have made the decision to stop all medical regimens. My family would have respected my decision not to be kept alive.
I love to hike in the mountains, kayak the rivers, and fly fish. If I am unable to do the things that make me happy, then let the last mountain I climb be to heaven.
Laurie Reichart has worked more than 25 years in the health field, and studied creative writing at the University of Nebraska - Lincoln. Laurie travels and has studied various cultures and beliefs in the United States. Most of her essays and stories are based on the world of medicine. Her forthcoming short story, “Pink Slippers,” is in the 2011 edition of Blood and Thunder: Muses on the art of medicine. She has contributed essays to various health organizations, and most of her writing has been on social issues in healthcare and emotional issues on death and dying. After belonging to a writer’s group she took a leap and is currently working on a historical fiction novel.
