Hope is the first step on an uphill climb. How can we in good conscience empty that priceless ether of goodwill from a living being? What a person can do with a finite amount of time can change the world.
Parvez Dara, MD, FACP, MBA
Imagine accidentally falling off an abyss. One simply cannot fully understand the gravity of the situation! You might skip a beat thinking about it while sitting in a chair in your living room, if you have tons of empathy, as you try to get into the shoes that are flailing for survival.
But there he was, ashen as if impaled by a spear through his heart. He sat motionless, ossified as his thoughts tumbled end over end. I could see the fine tremors on his fingers. His eyes were bloodshot from the riot in his brain, the cacophony of cries, the chaotic mixture of black and white, of right and wrong, of good and bad, of fear and strength, of a past and a finite future, of children, of this and that, and of time.
I sat on a chair by his bedside, and on the other side was his wife of a few years putting a brave face on. Her eyes too were bloodshot, holding back the deluge that would be spent in the bathroom alone. Her face was red from a mixture of emotions: anger, frustration, denial, and absolute fury at the fate that would befall them soon. Her one love, stranded alone against all odds of his overall good health, slipping away. Her knuckles paled, as she fought her emotions against reality. She held firm, mouth pursed in defiance, and her body arched and angry.
“So doc, how long do I have to live?” he asked. His voice a whisper between dried words that took an effort to escape his lips, with the limited force of the breath that wished not to be heard.
What do I say to him? How do I answer that question?
Do I cite the statistics and tell him the median survival rate? Or do I simply tell him that 50% of people with his diagnosis live less than x months, and the other 50% live longer than that? Or do I tell him the average survival rate, which was slightly lower than the median in his case? What would that do to him? And as much, what about his wife? How would she interpret her future? What about the unborn child that gave her that tiny bump in her belly? How would she interpret that answer? He might be one of those outliers we all live to tell about at medical conferences. He might have a certain unknown mutant gene in him that could be exploited by one or the other drugs available to lend him more time. Do I play the nice card and say something banal like, “As long as you want to live?” Trite as it sounds, it has some truth to it, too. But then the respect between us three might be lost. Wouldn’t it?
A State of Turmoil
I did not realize that my hands were clenched tightly too, cutting off the circulation in the capillaries and turning my knuckles a shade whiter. I shifted in the chair, uncomfortable with the demands placed on me, measuring the impact of my words, his life, and the gravity of the situation oozing through ever corner of that four-walled room. Time seemed to stand still. The seconds crept and still my thoughts were end over end—a state of turmoil.
Today’s Facts, Tomorrow’s Hopes
“What I am about to tell you has to be understood carefully by both of you. I don’t offer false hopes. I cannot offer the permanency of a cure, but what I am suggesting are the facts as they exist today. These facts might change over the course of your illness and propel us to a better tomorrow, but today, I can offer you only these facts.”
He relaxed as I drew some graphs of survival data. I showed him the slightly fat tail in the graph where the outliers lived. I explained to both of them that therapy in its current form could offer him some relief, but the limits imposed upon the data by arbitrary numbers were based on 95% confidence intervals and assumptions (as all statistical probabilities are).
As our conversation proceeded, he relaxed, his eyes shed some isolated tears, and the color in his face returned. I do not know how the subject of Stephen Jay Gould came up, but I found myself quoting him: “All evolutionary biologists know that variation itself is nature’s only irreducible essence…. I had to place myself amidst the variation.” I told him the evolutionary biologist was given 6 months to live, and after research, he realized that the outliers could live well past 10 years with the disease that he had. He did! There was hope for time. More color filtered back into his face, and as confidence built, a partial smile broke out; I said, “Do some of your own research and run that by me. I will help you along.”
Winning Outlier Status
The next day, I walked by his room and found that he had been discharged from the hospital. I cared for him after that hospital day for a fairly long time. He defied the odds. He fought the battle and won his outlier status.
He saw the birth of his child, and a few birthdays to boot. He created a company that employed 10 employees and was lucrative in the first few months. Ah life, the eternal source of human innovation, was in full bloom. He lived life well on that finite time he was allotted.
Hope fights despair. It encourages choices and readies us for the necessary toil. Hope is the first step on an uphill climb. How can we in good conscience empty that priceless ether of goodwill from a living being? What a person can do with a finite amount of time can change the world.
So how does one answer the question, “How long do I have?” It depends on the individual asking the question and the physician answering it. There must never be barriers between the two. Eye-to-eye contact and a controlled tincture of empathy are essential. There should never be the burden on either one during the conversation. No impediments should confiscate that precious time between a patient and his or her physician in discussions of such weighty matter. None! ■