I was first diagnosed with leukemia while travelling on a vacation in 1994. I had a persistent respiratory infection so I went to a local emergency room to get an antibiotic. I had the usual tests, including a blood test. A doctor came into the room where I was waiting and introduced himself as an oncologist. He told me that the blood test showed that I had “a terminal and incurable form of leukemia” and “less than five years to live.” Just like that. He also added that I didn’t need to rush back to New York, as there was nothing to be done.
A few months later, I sat in an office in New York of an oncologist who specialized in my form of leukemia. His manner was soft-spoken and warm. He told me that although there was no cure for my disease, there were a number of relatively mild chemotherapies that were effective in extending patients’ lives for many years, and that given developments in research, during the additional time there may well be a cure for my illness.
It turns out that the second doctor was correct. Five years after being diagnosed, bone marrow transplants became available for people my age with chronic leukemia. I had a transplant and a few years after that there was no longer any sign of the disease.
When I inquired with physician friends about my experience with the first doctor, they spoke of doctors’ fear of instilling in patients “false hope.” In my interactions with many cancer patients, I have yet to hear of any patient who felt they were given false hope. But there were many instances of patients, like myself, who were filled with “false despair.”
Now, I can’t imagine how difficult it must be to be an oncologist, to have to tell patients that they have a terminal illness, to see them go through brutal chemotherapies, to see them die. According to one estimate, during the course of their career, an oncologist will break bad news to their patients almost 20,000 times – from first diagnosis to the news that death is near. Yet, many doctors who approach this task in a cold-hearted manner seem to justify themselves with a “tell it like it is” philosophy. Easy for them, devastating for us.
Medical science readily acknowledges the placebo effect – that many patients who believe they are getting an effective medicine show improvement in their condition even when they are in fact not getting the medicine, but are instead receiving a harmless substitute. If the effect of a patient’s positive expectations can so profoundly affect his health, what then is the impact when a patient is, from the outset, given the difficult news about having cancer in a manner that so discourages his spirit?
Most lay people know the fundamental maxim of Hippocrates to physicians throughout the centuries: “First, do no harm.” This has always been understood to have to do with the medicines and treatments that physicians prescribe. In this day and age it applies equally to how doctors talk to and act toward their patients.
Andrew Robinson was a successful New York trial attorney when he was diagnosed with leukemia and told he had less than five years to live. That was more than 15 years ago. He is the founder and CEO of Patient2Patient, a company that develops disease specific guides to help patients learn how to locate and use medical information and resources on the Internet. This post first appeared at Prepared Patient Forum.
