Simone, Joseph V. MD
Perhaps more than any other medical specialty, oncologists care for patients who are forced to face death. This is one of the more difficult aspects of our practices for all involved: patients, their families, and those of us who care for them. To widely varying degrees, we all undergo psychological and social stress that includes frustration, helplessness and, at some point, struggles to face the inevitability of death. Finding ways to deal with death, our patients' or our own, is a topic as old as mankind.
One of the greatest descriptions of facing death was written by Leo Tolstoy and first published in 1886. The Death of Ivan Ilych is a novella that is only 100 pages long in my 1981 Bantam paperback edition. I read it many years ago and again recently, prompted by the death of a friend. Reading the book at my “silver senior” age was a very different experience from reading it in my middle years. This time it was akin to looking into a mirror and asking myself how I would respond to the situation faced by Ivan Ilych.
The key question is whether this great work has any relevance to medicine today. A brief description of the story follows.
Ilych is a local judge in his mid-40s. He goes about his predictable life, which sounded to me like that of today's typical upper middle class subarbanite—a lawyer, doctor or businessman who belongs to the right country club and has friends of similar social standing. Ilych wants to move up the social and professional ladder more than anything else.
While decorating his apartment he fell from a ladder. He regained his balance but struck his side against the knob of the window frame. The pain went away in a few days, leaving only a small bruised bump that was a bit tender. Months passed and he increasingly complained of a strange taste in his mouth and some discomfort where he injured his side. He finally went to a doctor.
To Ilych only one question mattered: was his condition serious or not? But the doctor ignored this inappropriate question—One simply had to weigh the alternatives: a floating kidney, chronic catarrh, or a disease of the caecum. It was not a matter of Ivan Ilych's life, but a conflict between a floating kidney and a disease of the caecum. Ilych thought this was a serious matter, but to his doctor, it was of no major consequence. Ilych felt resentful that the doctor didn't take his problem seriously.
As time passed and he lost his appetite, in his heart he knew he was dying, but he was unaccustomed to such an idea and he just couldn't grasp it. Before this, death was an abstraction that applied to others but not to him. He tried to push the thought out of his mind, but failed. On his downhill course, friends and family minimized contact with him because of his worsening appearance, not knowing what to say. He suffered most of all from the lie that he was not dying, but was simply ill, and that if he stayed calm and underwent treatment, he could expect a good result. But he knew better and was tortured by this lie because they all wanted to force him to accept it, which prevented any honest discourse.
He continued to decline despite the use of opium and morphine. In his last hour his wife and son were weeping at his side. At that time, he had a brief period of peace and acceptance, and then died.
Medical care is very different today with so many powerful diagnostic and therapeutic tools. But when it comes to human behavior, I believe we can see ourselves—doctors, patients, families, and friends of patients—in some aspects of this story. Here are some behaviors that I believe we can see today:
* “It's happening to him, not me. Therefore I don't need to think about it much; I have enough to worry about. And I don't want to bother him, so I won't call or visit.” This is a common, almost reflexive reaction. We see this underscored by the war veteran who sees the soldier next to him killed and asks himself, “Why him and not me? And I am glad it missed me.” But this can be taken to the extreme of staying away from the patient or stopping any normal communication with the patient.
* “He is very sick and I am uncomfortable being near him. Maybe whatever he has is catching. And what does one say to someone who is dying?” We don't do a good job of helping people deal with this attitude, making them understand that showing compassion and respect for the patient, even for five minutes, is helpful in reminding the patient that he has not been abandoned.
* “My doctor doesn't tell me what I need to know. He patronizes me and keeps ordering test after test without a satisfactory explanation.” Although there is usually a long list of diagnostic tests and procedures, and the sometimes sloppy transition from one specialist to another, the result can be the same; the patient hears many different stories in language or jargon he may not understand and ends up confused and afraid of what he doesn't know.
* “My family knows something that they won't tell me.” This approach was common here and in Europe in the middle of the last century, and it still pops up once in a while today. But some family members still perpetrate “the lie” today, telling the dying patient he will get better or that today he looks better—anything to avoid dealing with the obvious and focusing on making the patient as comfortable as possible.
* “If he dies, what happens to me?” A colleague, relative, or partner often focuses instead on the consequences of the patient's death. It may be unseemly, but this is human nature in action and harmless as long as the patient and his family are not hearing it.
* “I never thought seriously about my death before I became ill.” This is still commonplace and particularly true today. With all the medical advances of the past century and the blaring publicity about miracle drugs and breakthroughs, the expectations of patients and family members have skyrocketed. One or the other may believe there is a new, secret treatment out there that will cure the disseminated cancer. So the idea of death is postponed or dismissed because, the thinking goes, “modern medicine” has or will find a cure any day now.
* “A loving, compassionate presence with the dying patient is often the best available medicine.” For Ilych, sadly, up until the last day, a houseboy who provided his nursing care was the only one who understood this thought and acted appropriately with Ilych in his time of need. It is a shame in this country that patients who will die are often not put under hospice care until a few days before death. Having volunteered at an inpatient hospice facility here in Atlanta, I am amazed at the high quality of care, easing of symptoms, and the compassion freely given these patients. Another round of sixth-line chemotherapy, for example, is given because the family members, who may feel guilty about not paying more attention to the elderly relative, press the doctor to “try anything”—and too often he or she does.
Despite the 127-year span from the publication of Tolstoy's book to today, when it comes to human nature, the more things change, the more they stay the same.
© 2013 Lippincott Williams & Wilkins, Inc.