My youngest child has been struggling with numbers.
This all started around the time of his 4th birthday, in mid-November. He knew he was getting older and asked a lot of questions about babies, who were “too little to have a number,” being less than 1 year old. Then, on the day of his birthday, he wanted to know when he was turning 4.
I told him that today was his birthday, that he turned 4 today.
“But when do I turn 4?” He had recently learned to emphasize certain words in an effort to assist his dim parents in getting his questions answered.
I told him at 8 in the morning, the time he was born.
“No, no, when do I turn 4?”
I looked at him helplessly, wondering whether he was expecting some pivotal moment when he would suddenly gain five inches in height. He decided that the anointed time occurred later that day, after he received his presents.
A week later, his mother and I went for a car ride with her parents, both in their mid-70s. In a rare quiet moment amid the usual barrage of instructions on how to navigate the rural western Pennsylvania roads, our son spoke up.
“When is Pappy going to die?”
The adults fell over themselves responding, trying to both reassure him and ourselves, as if the faster and louder we answered his question, the more we would negate it: A lot of years. Not for a long, long time. We hope he never does.
This satisfied him for the moment, but much like his father, he broods about these types of important topics. A couple of hours later, back at the house, he asked as if in mid-thought: “But, what is the last number?”
I repeated his question, stalling.
“Yes, what is the last number? What’s my last number?” he asked. His mother and I glanced at each other, in a quick game of chicken to see who would answer first.
“We don’t know, honey,” I finally said. He looked up at my wife, who nodded in agreement.
My son’s words came back to me the following Monday when I saw my first patient, a man in his 70s whose leukemia didn’t get worse on chemotherapy, but unfortunately also didn’t get better. We had run out of options, aside from supportive care.
“How long does he have?”
My patient’s son asked the question that was on everyone’s mind, and when he did, the wave of emotion that washed across the room was almost palpable. My patient’s daughter crossed her legs, and his wife started to cry. So did my patient, though he tried to hide it, glancing up at the fluorescent ceiling lights of the clinic room. Guys in his generation, I’ve found, don’t like to appear weak in front of their family.
I turned to my patient and asked him if he wanted me to talk about this, about his prognosis. My first responsibility in this type of situation is always to my patient and what he wants to hear. Some people want to know specifics, down to the half-month of predicted survival; others want no information at all, as if hearing a number will seal their fate.
“Sure, I guess so,” he answered. He did want to know, but he didn’t want to know.
Oncologists are notoriously bad at predicting survival, and none of us wants to be known as “the doctor who told me I would be dead by now,” the doctor who made a prediction of imminent demise, sending a family into a terrifying tailspin of goodbyes, only to be proven wrong and subsequently mocked for years to come. One of my patients, upon being told by another doctor that she had two months to live, held Christmas in April so she could spend one last holiday with her grandchildren. She survived to see two more Christmases.
At the same time, we need to be truthful and give guidance to people who want time to prepare, time to write wills and pay off debts, to say goodbyes and to leave instructions, to tie up the loose ends of a life now heavy with meaning.
We try to provide hope, but not false hope.
So we give ranges, starting with the best estimate of survival, because my patients have told me they shut down after they hear the worst estimate. We talk about setting goals, about maximizing quality of life, because we don’t have much leverage with quantity of life. We emphasize spending as much time as possible with family and friends, and as little time as possible with people wearing white coats. We tell them we’re not going to give up if they don’t give up.
But the truth is, we don’t know.
Dr. Mikkael Sekeres is director of the leukemia program at the Cleveland Clinic.
