“The question” comes in several forms: “Doc, what stage is my cancer?” “What is my prognosis?” “Can it be cured?” “Am I going to die?” “Have long have I got?” These tough honest words require courage. “The question” superficially asks for a simple answer. Time to live. However, in the real world of life and death, these questions and therefore the answers are far more complex and subtle.
Years ago we had a hospitalized patient who was dying. This woman’s cancer was not growing, nor were there any new significant medical problems. She was not clinically depressed or suicidal. She had not received some toxic chemo cocktail. She was simply dwindling away. We sat down to talk with her, to encourage her to rally. She reassured us that she was not upset and she was in fact at peace. Why then was she dying? 180 days earlier a physician had told her she had six months to live. She had accepted this prognostication. So, time up, game over, she died.
Now let’s be clear, she did not become despondent or “give up.” This unfortunate patient listened to solid ridiculous medical advice and made it reality. She was that unusual person who was so comfortable with her own mortality that knowing death was coming she actuated the end of life. I was taught two valuable lessons. Never underestimate the incredible power of the human brain in the mind-body connection. Second, be very careful how I answer “the question.”
Research has shown that when estimating remaining time of life for a specific person, most of the time doctors get it wrong. Of course, if you ask a physician while they are actually performing CPR, they will probably get it right, at least within a day or two. But, asked to estimate time of survival for cancer, heart disease, end stage kidney disease, ALS or, hardest of all, Alzheimer’s, doctors get it wrong. Now, I do not mean wrong by a day, week, or month, I mean completely wrong. The error often measured in months or even years. How can this be true? Disease is highly variable between varied persons producing varying results and death often comes from unexpected varied complications.
For a patient to expect an accurate statement of survival is not reasonable and produces confusion, anxiety. Therefore, when a patient or family asks “the question,” for what answer should they be looking? Alternatively, put another way, what is the “right question?” The question that may result in the best answer is, “Is this a curable disease? If not what is likely to happen with this illness? What events may occur? What complications are probable? Doctor, in your personal experience, with all you have seen, what might future hold?”
The doctor in answering either “the question” or perhaps the “right question” must be aware of both his limitations, as well as the needs of the patient. The physician’s limits include the reality that he is not a deity and therefore cannot see the future. However, he has most likely seen this illness many times and can offer a great deal to help each family plan and cope. In order to deal with the future, it requires a basic understanding of the course of the illness. Will the patient get stronger? Will hospitalizations be likely? If there will be pain, how will it be treated? Can the patient travel? What may be the costs, physical limitations, choices of treatment, or psychological impact? If this will be a chronic condition what will that mean for the patient’s lifestyle? If this will be a fatal condition what may happen near the end of life.
Patients rarely want to “know” a specific survival time number when they ask “the question.” Except in the rare circumstances “five months, three weeks, two days” never did anyone any good. Nonetheless, patients have the right and need to plan their life. It is theirs to live, not the physician’s to direct. By providing empowering answers, the gift of control and comfort can be some of the best therapy.
James C. Salwitz is an oncologist who blogs at Sunrise Rounds.