• Communication is poor when it comes to chemo, but who is to blame?

    New study published in the NEJM. “Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer“:

    BACKGROUND: Chemotherapy for metastatic lung or colorectal cancer can prolong life by weeks or months and may provide palliation, but it is not curative.

    METHODS: We studied 1193 patients participating in the Cancer Care Outcomes Research and Surveillance (CanCORS) study (a national, prospective, observational cohort study) who were alive 4 months after diagnosis and received chemotherapy for newly diagnosed metastatic (stage IV) lung or colorectal cancer. We sought to characterize the prevalence of the expectation that chemotherapy might be curative and to identify the clinical, sociodemographic, and health-system factors associated with this expectation. Data were obtained from a patient survey by professional interviewers in addition to a comprehensive review of medical records.

    This feels like the flip side of yesterday’s post, where big effects were often found to be outliers. In this study, patients were asked about their expectations for chemotherapy for metastatic lung or colorectal cancer. The bad news is that these cancers have terrible prognoses. Chemotherapy is still the treatment of choice, but the effect we’re hoping for is an extension of life by weeks to months. Maybe you’ll see some relief of symptoms. But it’s not going to be curative. There are also, of course, significant side effects.

    Therefore, there is no “right” answer with respect to whether to engage in therapy. Some choose to use the chemo, some don’t. But what we really want is for those decisions to be informed.

    That’s what this study was trying to measure. They asked almost 1200 patients with incurable cancer what their expectations with chemotherapy were. The results weren’t good. Almost 70% of those with lung cancer and more than 80% of those with colorectal cancer did not understand that chemotherapy wasn’t going to cure their cancer. What was surprising to me was that people who reported that they had good communication were more likely to believe incorrectly that chemotherapy might cure them. Being more educated did not improve understanding, nor did an improved functional status or the patient’s role in decision making.

    It’s hard to know where the lesion is here. Is it with patients, who aren’t listening well? Is it with physicians, who aren’t able to convey the bad news? We can’t tell. I’m a bit concerned that the reasons misinformed patients were more likely to report favorably about communication with their physicians is that patients who heard good news from their doctors liked their doctors more. That bodes poorly for the ability of both sides to make this better.

    @aaronecarroll

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    • I’m not sure I agree with this article.

      My sister died of metastatic breast cancer and she believed (as any patient should believed) if one in 10, one if 5, one in 100, one in 1000, one in a million — whatever, we survive with chemo, she was going to be the one.

      Deep down you know the odds are against you, but no matter what you’re told, you have to believe you’re going to beat cancer.

      It’s not denial. It’s just saying you’re not giving up.

      • I think it is important to examine where the “I will beat it” idea comes from. If it is a fighter’s way of managing the treatment she selected with full information, great! However, if it is how patients mistakenly select a treatment they would not have otherwise, it’s a failure. I bet it is a mix of both.

      • And your sister can make any choice she wants. She can also have all the hope she can muster. But she should make an informed decision.

        Sure, there may be a 1 in a million chance she’ll beat the odds. But there may be a 7 in 10 chance that the chemo will be so debilitating that she might not enjoy the time she has left. And when we’re talking an extension of weeks to months, people may want to spend that time with family rather than being tied to a hospital.

        As I said, there’s no “right” choice. People just need the facts so they can make the best decision for themselves.

        • I agree very much with all that you have said — we want people to make informed decisions. I still have this little bird whispering in my ear that, for people with insurance, the rest of the insurance pool has a stake in the decision. Some of the newer chemo therapies are very, very expensive.

        • Doctors are going to be penalized more and more in the future as “patient satisfaction” ratings drive reimbursements.

          This study is direct evidence that patients like their doctors more who give them “hope”, even if that hope is a lie.

          the problem with these patient satisfaction ratings is that they are extremely BLUNT tools. Yes, there are many cases where patient satisfaction matters, but there are many cases where it should be ignored. Counting on government bureaucrats wtih no medical experience to make this distinction is to inviate a Kafka-esque delusion.

        • This study doesnt really prove anything — just that there is a disconnect between doctor and patient.

          What this study really needed was a secret video camera in every room to show what the doctor really told the patient vs what the patient heard with their selective filter. The video would conclusively demonstrate whether the doctors gave them false hope or if they told them about the bad statistics but the patient just filtred that part out of the conversation. I’m sure it is a mix of both. My guess, though, is that the patients who rated their doctors highly got BAD medical advise from the doctors regarding outcomes.

          If you take 2 doctors who are equally compassionate/understanding and one of them tells a patient they are dying and the other tells them that there is hope for a new treatment, patients are almost always going to rate the 2nd doctor as a “better communicator.”

    • This issue is fraught with complications too fuzzy to tease out into specific cause and effect, yet I suspect that there may be a few factors at play here that might be valid.

      First, there is the relentless rosy glow of positive thinking dressed up like hope that permeates the cancer field, or as cancer survivor and author Barbara Ehrenreich describes it: “The pervasive pressure on sick patients to be relentlessly positive is like ‘seeing the glass half full, even when it lies shattered on the floor.”

      Second, one possible reason for patients’ misunderstanding is the common belief, reported in a number of studies, that if a treatment is offered, it must have curative benefits.

      Thirdly, part of the problem, as one who worked in hospice palliative care for several years, lies within the practice of oncology itself. It was distressingly common on our inpatient unit, for example, to admit gravely ill end-stage cancer patients whose oncologists had not yet mentioned to them or their families the D-word: the possibility that this time, this aggressive surgery, this radiation, this round of chemo might not work and the patient might DIE.

      In fact, there’s a (bleak) hospice nurses’ joke that goes like this:

      Q: Why do they put nails in coffins?
      A: To keep the oncologists out.

    • I do think that there isnt great communication by the doctor as to what will happen when on chemo.

    • We will never win the war against cancer with our present approach. When you comprehend what cancer is and why there’s a lot of it these days you will comprehend why they will by no means find a remedy. It is exactly the same as attempting to find a remedy for scurvy which of course everybody knows is really a vitamin C deficiency illness. With scurvy it’s effortlessly cured by eating a meals item that consists of the missing vitamin.