Like many of you, early in my career I began to face the difficult issues inherent in end-of-life care. I accumulated a library on the issue but found it difficult to find clarifying insights instead of superficial banter or a misplaced spiritual focus. I learned to go to the Russian writers for in-depth, humane descriptions of suffering and death. I have written a bit in the past about the writing skills of these authors relevant to medicine.
Alexander Solzhenitsyn's Cancer Ward is a masterpiece that provides insight into the fears, strengths, and weaknesses of people under enormous stress because of cancer. Fyodor Dostoyevsky is a master at describing how people like us deal with their sins and challenges, and especially the value of lives, especially in The Brothers Karamazov. However, for the purpose of this column, the best source is the shortest-Leo Tolstoy's masterpiece, The Death of Ivan Ilyich, published in 1886. This novella in my little yellowed-page Bantam Classic pocket book edition (that I got for $1.35 in a used bookstore long ago) is only 99 pages long. It is a tour de force of artistic compression-the impact of a novel from what is essentially a long short story.
Tolstoy Describes the Patient
Tolstoy describes a 40-something man, Ivan Ilyich Golovin, an accomplished attorney who rose to the position of high court judge. Ivan Ilyich (I use this name format as Tolstoy did) develops a slowly progressive, ultimately fatal disease. Despite the radical changes in medicine since his time, Tolstoy would need to change none of the human essentials if he were writing it today; his description of this "worldly careerist" describes features of many of us professionals today. Ivan Ilyich is successful by societal standards. He has married "correctly," has two attractive children, and has achieved substantial professional stature.
One day, shortly after being appointed to the high court, he fell and banged his side. It was sore for a couple of days, then subsided. Later, he noticed a small lump in the area that was mostly painless, but it remained tender to the touch. He had a good life, took pride in his work, moved in the best social circles, and derived great pleasure from playing whist, a card game similar to bridge, with his friends.
But the discomfort gradually became annoying to him and his disposition worsened, leading to frequent arguments with his wife. Finally, his wife insisted he see a doctor. Here is Tolstoy's acidic description of the visit to the doctor:
"The whole procedure was just what he expected, just what one always encounters. There was the waiting, the doctor's exaggerated air of importance (so familiar to him since it was the very air he assumed in court), the tapping, the listening requiring answers that were clearly superfluous since they were foregone conclusions, and the significant look that implied: 'Just put yourself in our hands and we will take care of everything...' [Then] the doctor said: such and such indicates that you have such and such, but if an analysis of such and such does not confirm this, then we have to assume you have such and such...and so on. To Ivan Ilyich only one question mattered: was this condition serious or not? But the doctor ignored this inappropriate question...one simply had to weigh the alternatives: a floating kidney, chronic catarrh, or disease of the caecum...and in Ivan Ilyich's presence the doctor resolved that conflict brilliantly in favor of the caecum, with the reservation that if an analysis of the urine revealed new evidence, the case would be reconsidered."
Over several months, the aches changed to pain that became progressively worse. He began to lose weight and developed a bad taste in his mouth, bad breath, and a poor appetite. Despite repeated visits to doctors and multiple medications, he was on a downhill path.
If Ivan Ilyich had ever thought about death, it was never his own, it was always removed from serious concern. Death happened to others and required expressions of sorrow and condolences that caused brief and unwelcome interruptions in the comforting routines of a busy life. In fact, Ivan Ilyich never deeply examined his life, his only focus being on the physical aspects. He was an opportunist, a "man on the make," in society and his profession; metaphysical issues were of no interest. His professional authority led him to believe he was special.
Even though he sometime acts like a pompous boor, in some ways Ivan Ilyich becomes a sympathetic character because we can glimpse a bit, or more, of ourselves in him, because Tolstoy uses him to express his own fear of death and because of Tolstoy's graphic and heartbreaking description of Ivan Ilyich's suffering.
What sets this narrative apart from most treatments of death in the artistic and medical literature is that everything is described as seen and experienced by the dying patient. The viewpoint is personal and specific instead of generic, making it more poignant, and Tolstoy's artistic genius creates the mood, intensity and relentless clarity of a dying man...it is hard to watch, but hard to look away.
A Story of Medicine
There are several circumstances illustrated by Tolstoy's story that will be familiar to most doctors and nurses.
Ivan Ilyich says this can't be happening to him...it was only a little bump, after all. We are familiar with denial and the attempt to apply reason to what doesn't lend itself to reason. He also points to his living an exemplary, if unexamined, life and the injustice of this happening to him. The application of justice is, of course, also fruitless. He is tormented by the lack of an answer to, Why me? He simply cannot grasp the reality of dying.
He dreams of cures though he eventually comes to acknowledge the fact that he is dying. He thinks about "the big lie." All around him-doctors, family, and friends-talk about his recovery and that the next medicine may do the trick. But it is all a big lie. He knows he is dying but nobody is honest with him. He is "trapped in a mesh of lies." This leads to his isolation, his sense that no one understands and he is all alone facing "It," which is what he calls death. Everyone around him is thinking beyond his death: the funeral, how they will get along without his income, will they get promoted when his job is filled, and so forth. He realizes that is what people do, that is what he did, because they are not dying. He comes to understand that ultimately, everyone faces "It" alone. Near the end he asks everyone to leave him alone.
Everyone lies to him except Gerasim, a farm boy who is brought in to care for him. He alone understands and accepts what was happening. When Ivan Ilyich thanks Gerasim for his kindness and help, the boy says, "We all have to die someday, so why shouldn't I help you?" By this he meant, Tolstoy tells us, that he did not find his work a burden because he was doing it for a dying man, and he hoped that someone would do the same for him when his time came.
Ivan Ilyich's last few days were horrible. He dreamed he was being stuffed into a black bag and he screamed in pain for 3 days before he died. An epiphany and relief came in the last moments before his death. He finally could admit to himself that perhaps he did not live a "good" life. All those honors and high stations and high society now seemed so pitifully irrelevant at this moment. He comes to admit that he could have done better, an admission of his smallness and an understanding of what is really important in life. Thus, his physical crisis ends at the same time as his moral crisis.
We are fortunate to have a contemporary writer with some of the writing skills of Tolstoy and the same uninterrupted gaze at death. Atul Gawande, MD, MPH, a physician and gifted writer has written many books and he writes regularly for The New Yorker magazine. His article on the topic of end-of-life care is, Letting Go, published May 26, 2010, in The New Yorker. What should medicine do when it cannot save your life?" He tells stories familiar to any oncologist and most physicians about patients who are going to die because therapy is no longer effective, and how patients, families and caregivers deal with it. He includes himself among doctors who on occasion recommend treatments that they know will neither cure nor extend life with even a modicum of quality. He graphically describes the wrenching challenges for families and caregivers facing death and helplessness.
Gawande's article is excellent and I urge you to read his article as well as Tolstoy's novella.