Do patients bond best with doctors who misinform them with optimism?

Metastatic (stage IV) colon cancer and lung cancer are fatal incurable illnesses. That doesn’t just mean they are life-threatening. A fatal incurable illness is one which has zero survivors. You don’t know anyone who had metastatic colon or lung cancer who survived and is no longer ill.

Chemotherapy is still occasionally used in such cases and sometimes can prolong life by a few months. Chemotherapy might also help temporarily alleviate some of the symptoms caused by the cancer. But what chemotherapy never does in these cases is cure the disease. The distinction is important because chemotherapy itself frequently has serious and uncomfortable side effects and patients who are considering undergoing it should understand the benefits they may gain.

A disturbing study in the New England Journal of Medicine suggests that many terminally ill patients misunderstand why they are receiving chemotherapy. The study was a survey of over 1,100 patients with a recent diagnosis of stage IV lung or colon cancer who had opted to receive chemotherapy. The survey asked several questions about their expectations of chemotherapy. One such question was “After talking with your doctors about chemotherapy, how likely did you think it was that chemotherapy would cure your cancer?” Response options were “very likely,” “somewhat likely,” “a little likely,” “not at all likely,” and “don’t know.”

“Not at all likely” is the only response that conveys an accurate understanding of what chemotherapy can do for these patients. Yet 69% of patients with lung cancer and 81% of colon cancer patients chose one of the first three responses, reflecting mistaken expectations of their treatment. Though previous studies suggested that some patients are mistakenly optimistic in the face of a terrible prognosis, the very high fraction of patients in these studies who apparently believed they might be cured was surprising.

What could account for this? An accompanying editorial ponders the possibilities. Might the oncologists not be giving patients an honest explanation of their prognosis? Prior studies show that most oncologists give bad news honestly, so that is not likely to account for the majority of patients misunderstanding the goals of treatment. Perhaps patients actually know that a cure is impossible and have discussed this with their doctors and their families but are reluctant to share this painful realism with a researcher who is a stranger. Perhaps many patients heard the bad news and chose not to believe it.

Certainly some selection bias is involved. The study, after all, interviewed only patients who chose to undergo chemotherapy. That would include whichever patients were most likely to ignore bad news or exaggerate the possible benefits of treatment. Those who were mostly likely to accept bad news and minimize the possible benefits of treatment were the most likely not to have pursued chemotherapy and would not have been included in the study.

The distressing possibility is that many of the patients surveyed are fooling themselves. In other facets of life self-deception might be beneficial, or at least harmless. (“I look terrific.” “I think I’ll do great in this interview.”) But in this case patients with limited time are choosing to spend that time in healthcare facilities experiencing side effects instead of at home (or on vacation) with loved ones.

One final worrisome finding is that the patients who reported better scores for how well their physician communicated with them were less likely to give accurate responses for the goals of chemotherapy. That means that patients who best understood that chemotherapy could not cure them reported that their physicians were worse communicators than patients who misunderstood their likelihood of cure. Does telling bad news inevitably strain the physician-patient relationship? Do patients bond best with physicians who misinform them with optimism or allow them to misunderstand important aspects of their care?

As patient satisfaction surveys begin to play a larger role in physician compensation we may ironically find that doctors will be increasingly paid to cater to patients’ unstated desire for misinformation.

Albert Fuchs is an internal medicine physician who blogs at his self-titled site, Albert Fuchs, MD.

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  • Ali Gilmore

    I hate to be a warm blanket on this terminal parade, but I was diagnosed with stage IV colon cancer (spread to my left lung) in the fall of 2010 and I am alive and well (in remission) and enjoying my second lease on life just fine, thank you very much. I agree that the word “cured” is premature and a patient should be given an honest account of their chances of survival going in, so they can make an informed decision on how to spend the life they have, but how can you say that optimism is misinformation when I am living proof that there is hope?

    • http://twitter.com/AlbertFuchs Albert Fuchs

      Mr. Gilmore, you raise an excellent point. I suppose many patients may have thought of “living without disease for a while” as what “cure” means. I wish you continued good health.

      • Ali Gilmore

        Thank you, it’s “Ms.” Their generic avatar misrepresented.
        I suppose if what was ailing you doesn’t ail you again for the rest of your life and you die of natural causes then it would be natural for people (if not technically correct) to call it “cured”. I agree with the term “incurable”. However, I do protest to your usage of the words “fatal” and “zero survivors”. I’ll admit it got in a few punches, but I’m very much alive and well after a Sigmoidectomy, 3 rounds of chemo and cyberknife surgery. So, how many years do I have to live in remission and enjoy a contented life before you will change your statement from “zero” survivors to “one” or do I need to round up more like me (I doubt I am an anomaly) to get you to change it to “some”, I agree with the point that it is harmful to give patients false hope and rob them of an informed choice on how to spend the last of their days, but your statement to me, seems to do equal harm by giving people a false sense of futility.

        • http://twitter.com/AlbertFuchs Albert Fuchs

          Ms. Gilmore: drat! Sorry about guessing your sex wrong.

          Regarding the assertion that stage 4 lung and colorectal cancers are universally fatal, your argument isn’t with me. I’m not even an oncologist. Your argument is with the New England Journal of Medicine article that I cite. If the article is wrong and you (and others) are an exception, I’m delighted.

    • http://twitter.com/LisaGemini LisaGemini

      Congrats! God blessed you indded. It usually spreads to the liver and then it’s all over. May I ask how old you are?

  • Rick

    Although the blog was intriguing, it is the subsequent discussion that I found fascinating.

    I am a practicing GYN Oncologist. I spend the majority of my day treating patients and despite having these difficult, yet honest, conversations, I consistently score very high on patient satisfaction scores. I really do not think that there is any magic to it. But I have found that it is the language of medicine that gets in the way of an informative discussion.

    Whether we are discussing cure or palliation, we must remember that folks are perhaps in the most vulnerable position of their lives and the vast majority simply want to live. They filter everything we say through this. And as Ali so beautifully pointed out, definitive predictions of life or death are impossible, we can generally only quote statistics. And as I point out to everyone making treatment decisions, I cannot with any certainty tell where they will end up on the curve. In this environment, hope can comingle with reality and the honest truth is not compromised.

    With regard to language, I avoid definitives (always,never) and substitute with subjectives ( usually, occasionally). I seldom use the word cured and rather use “cancer control”. I never use the word terminal but generally say that “your disease cannot be cured, but we may be able to treat it”. When statistics exist, I share them, and I also try to explain to the patient why they may or may not fit on the known curves. I try to have these difficult conversations with other family members present so the content can be rehashed in a home environment and everyone is working from the same information. One of the biggest hurdles I have found was from well meaning general physicians who in trying to prepare these patients for what may come. Sometimes their information and approaches are outdated and destructive. When my wife was told of her leukemia diagnosis by our family doc, she was told (age 44) that she had months to live. That was 4 1/2 years ago, and she continues to do well.

    SO I think that docs can, with training and human kindness, manage to be both honest and maintain patient satisfaction. It’s not an easy skill to learn, but it can be done.

    Dr Fuchs thanks for bringing up this topic and Ali. thanks for your wisdom. Wishing you a long and well lived life. Stage is just a number. But I don’t need to remind you of that.

    Rick Boulay, MD

    • http://twitter.com/AlbertFuchs Albert Fuchs

      Dr. Rick, Thanks for your wisdom. I appreciate your suggestions, especially regarding avoiding the extreme adverbs of “always” and “never”. I will attempt to never… drat… to use them extremely rarely.

  • RJones

    Full, written disclosure, signed by all patients (unless incapacitated) is the only way to better manage our health care system and incredible costs.
    Zero patients with a zero survival chance should be completing a survey that says they expected to survive, unless said survey also gave a “miracle choice”, which would be an acceptable thing to have on that survey in my opinion.

  • http://twitter.com/LisaGemini LisaGemini

    Great article! I was livid with my dad’s physician for not telling any of us that he was already in Stage IV. Lucky for us (if you want to call it that), I had lost my ex-mom-in-law after a five-plus year struggle with Stage 2. My dad was strong and hung in there until his 50th wedding anniversary. He was blessed with big veins and didn’t need a port. Because both my parents have high blood pressure, I guess their family practitioner felt he was doing them a favor. Thank God I’m an oral cancer survivor who knows a lot about the disease.
    I shudder to think what happens to folks who don’t ask questions often and investigate. You deserve to know. Why waste five years in chemo if you could spend six months with your family? The whole family should be in the loop, too, because some people are better at badgering doctors (like me).

  • http://twitter.com/LisaGemini LisaGemini

    Only the good Lord knows when we’ll die. Although it’d be great if our doctors could pinpoint a date, the stage, treatment, faith and a positive attitude all play roles.