Doctor‚ what are you trying to tell me?

By Edward T. Creagan‚ MD

I had an interesting opportunity to speak at a medical meeting some years ago. The topic of the meeting was Recent Advances in Hematology and Oncology. Most of the participants on the program were world experts in the area of hematology‚ which primarily involves cancers of the blood (such as leukemia). As an oncologist who specializes in the treatment of solid cancers such as breast‚ colon‚ and lung‚ I was invited to speak about some of the stresses in modern medical practice.

As is my usual practice‚ I quietly sat at the back of the meeting room to get a sense for the size of the audience‚ the kinds of questions that were being asked (and might be asked of me)‚ and the overall layout of the auditorium. I sat through several hours of presentations by world authorities discussing a group of diseases that I had little experience with. Their names were tongue-twisters: agnogenic myeloid metaplasia‚ acute myelomonocytic leukemia‚ polycythemia rubra vera. These are unusual and sometimes deadly diseases.

Speaker after speaker solemnly took the podium and‚ with laser pointer in hand‚ outlined survival curves‚ complex treatment protocols‚ numbers and statistics‚ and facts and figures on such obscure issues as probability of recurrence‚ disease-free interval‚ and other technical issues.

I listened and then I made a startling realization. I placed myself in the position of a patient—something more of my colleagues need to do. At more than one point‚ I was tempted to raise my hand and ask the speaker‚ “What exactly are you saying? What do all of these facts and figures really mean to ME—the frightened‚ desperate patient who comes to you for care?”

What I did not hear in any of these discussions were answers to the kinds of questions that I would pose if I had one of these dreadful diseases—and that are asked of me every day in clinic. The real take-home message from this trip was that‚ for a time‚ I put myself in the place of a patient‚ and I realized how important it is to communicate not only the success rate for treatment‚ but also the human expense of the treatment and what it will do to the quality of life for the patient. We practitioners need to listen to our patients.

So let me switch places with my patients and list the kinds of questions I would ask and the answers we‚ as patients‚ deserve to hear:

Q: Doctor‚ what will be my quality of life if I choose this course of treatment? Will I be able to work? Can I play golf?

A: Sometimes patients ask simply‚ “What will happen?” My job is to find out what is really concerning my patient. Some patients are indirectly asking about abandonment‚ neglect‚ and being sent home “because nothing more can be done.” Others want to know about hair loss or nausea. It’s my job as the physician to find out their fears and offer reassurance. It’s your job as the patient to insist that the doctor answers this question based on past experience with patients who have your type of cancer.

Q: What’s my diagnosis and what is the treatment?

A: Patients need to understand the diagnosis in language they understand. To tell a patient with a brain tumor that he or she has glioblastoma multiforme is of little meaningful benefit. However‚ it is of far greater value to talk about progress of the cancer‚ whether or not the cancer was removed‚ how large the cancer was‚ whether surrounding tissue was contaminated with cancer cells‚ and the number of lymph nodes involved. Patients should try to learn the language of the disease and the treatment so they can seek out additional information‚ and this is typically done on trusted medical sites on the Internet.

Q: How long will I live?

A: This question requires a carefully measured reply‚ not a clumsily worded response because the answer can profoundly affect the patient and the family. No magic formulas exist for duration of survival‚ and we doctors have to acknowledge that. Patients need to understand that no single physician and no piece of software can provide a precise estimate of length of life remaining. However‚ we do have a general ballpark figure for survival‚ and it’s our duty to discuss this with patients‚ knowing clearly that this is simply a range. I try to say something like this:

“In your specific case‚ no definite answer is available. In groups of patients with your type of cancer‚ however‚ survival may range from several weeks to several months. Survival for several years is unlikely. Nevertheless‚ small groups of patients with your type of disease have meaningful and productive lives for reasons that we don’t yet understand. Close follow-up and careful monitoring at periodic intervals will help in determining problems and dealing with them as they arise.”

It’s sensible to be appropriately inquisitive and proactive and participate with all your healthcare providers. Ask your targeted questions. Be assertive and don’t take “I don’t know” for an answer. Doctors do know. During times of high stress and anxiety‚ it’s impossible for any of us to remember what we wanted to ask and then remember the doctor’s answers. That’s why I always recommend that an advocate or a family member or a confidante accompany the patient and act on that patient’s behalf.

Edward T. Creagan‚ MD‚ is the American Cancer Society professor of clinical oncology and a professor at Mayo Medical School. He is the author of How Not to Be My Patient from Health Communications‚ Inc. (Fall 2003; www.HowNottoBeMyPatient.com).