The majority of patients with advanced lung or advanced colorectal cancer—69 and 81 percent, respectively—mistakenly believe that chemotherapy can cure their disease, according to a new study by the Cancer Care Outcomes Research and Surveillance Consortium (CanCORS), published in the New England Journal of Medicine (2012;367:1616–1625).
The primary reason for this misunderstanding is related to the complex dynamics of doctor-patient communication in the setting of life-threatening cancer, explained one of the coauthors, Deborah Schrag, MD, MPH, of the Department of Medical Oncology at Dana-Farber Cancer Institute and Associate Professor of Medicine at Harvard Medical School.
“It's really hard to give people bad news. Physicians may very well disclose that an advanced cancer is incurable but then move on relatively quickly to treatment options in an effort to be hopeful about treatment and what it can accomplish.” While treatments may help with symptoms and prolong survival, they don't cure in almost all circumstances, she said.
Unfortunately, mistakenly thinking treatment may offer a cure deprives patients of the opportunity to weigh the risks and benefits of chemotherapy and to make informed decisions about their care, noted the study's lead author, Jane Weeks, MD, MSc, Director of the McGraw/Patterson Center for Population Sciences at Dana-Farber, Professor of Medicine at Harvard Medical School, and Professor of Health Policy and Management at Harvard School of Public Health.
Study results suggest that both doctors and patients play a role in understanding the potential of chemotherapy, she said via email. It's understandable that patients want to believe a cure is possible and that some oncologists find that taking away this false hope is difficult.
Better communication with patients about their treatment, life expectancy, and end-of-life care can help to manage their misconceptions about chemotherapy, said the coauthor of an accompanying editorial (NEJM 2012;367:1651–1652), Thomas J. Smith, MD, the Harry J. Duffey Family Professor of Palliative Medicine, Professor of Oncology, and Director of Palliative Medicine at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center. “As oncologists, we really own this. This should be part of what we do.”
Investigators evaluated the medical records of 1,193 patients in the CanCORS nationwide, health-system based, prospective, and observational study of which Weeks is Scientific Chair. Individuals had been diagnosed with Stage IV lung or colorectal cancer four months earlier and had received chemotherapy.
Professional interviewers also gathered data via a patient survey to assess clinical, sociodemographic, and health-system factors associated with expectations of chemotherapy being curative. While previous studies had polled cancer patients about their perceptions of chemotherapy, this is the first study of its kind to involve such a large and varied cross-section of the population, the researchers noted.
The study, funded by the National Cancer Institute and the Department of Veterans Affairs, indicated a greater likelihood of mistaken beliefs about chemotherapy among patients diagnosed with colorectal cancer as compared with those who had lung cancer. Mistaken beliefs were also more likely among Hispanic or Latino patients, black patients, and Asian or Pacific Islander patients compared with white patients.
Patients were less likely to hold mistaken beliefs if they received treatment in an integrated health care network or reported lower scores for physician communication—for example, a perfect score of 100 versus a score below 80. When news is delivered in a more positive light, patients tend to rate physician communication as higher, Schrag said. “When doctors are upbeat, they get higher scores but may not be communicating the full, realistic picture in a way that patients can easily grasp.
Education, functional status, and the patient's decision-making role were not significantly associated with a poor understanding of chemotherapy.
Overall, both groups of patients believed that extending their lives was more likely than a cure.
‘Courage to Ask Difficult Questions’
Asked for his opinion for this article, Charles F. von Gunten, MD, PhD, Provost at the Institute for Palliative Medicine at San Diego Hospice, a teaching and research affiliate of the University of California, San Diego, and San Diego State University, said that one of the study's strengths is that researchers had the courage to ask a large group of patients difficult questions. “On the other hand, the weakness, which the authors describe, is the inability to really dig in with individual interviews to sort out the explanations for the answers the patients gave,” he said.
Schrag said that the study could not discern whether misunderstanding stems from how physicians disclose the difficult information or how patients hear and interpret it, although likely it is a combination of both.
Beliefs Interfere with End-of-Life Care
Unfortunately, patients who think chemotherapy might be curative may be less open to discussing end-of-life options and care, Weeks noted, and when these discussions are delayed, patients and their families experience more suffering at the end of life.
Weeks and her colleagues have previously shown that patients who are overly optimistic about their prognosis are far more likely to pursue futile therapy, including resuscitation at the end of life, noted Natasha B. Leighl, MD, MSc, of the Clinical Studies Resource Center of the Ontario Cancer Institute at Princess Margaret Hospital in Ontario. However, their survival is not longer than those who are more realistic about prognosis and do not pursue futile therapy, she said.
Most people are never given as much information as they need to plan successfully for death, Smith noted. Instead, physicians tend to talk more about chemotherapy than about the difficult choices patients need to make about end of life care.
“There have been many studies in the literature showing that oncologists don't always discuss the true value of palliative chemotherapy in a clear and explicit manner,” Leighl said. In addition, they often don't discuss survival in specific terms.
To compound the problem, patients with advanced cancer may misunderstand what the doctor is saying, she continued. “Patients are often unwilling to say, ‘I have incurable cancer,’ even if the doctor has given them this information. They may be unwilling to say they can't be cured because they don't want to give up hope.”
Von Gunten noted that in his observations about how physicians speak about cancer and its treatment, he has seen that they tend to use words that have specific meaning to them as oncologists but that are ambiguous to patients. “Doctors need to learn to speak in lay language: For example, instead of saying, ‘There's a 40 percent chance of a response of 50 percent,’ oncologists should say ‘we're hoping the chemotherapy will make the cancer smaller for a while. If it does, you will feel better for a time.’”
Smith encourages oncologists to talk about coping with a poor prognosis at every transition point in the patient's care—meaning during a change in treatment or when the prognosis changes. Integrating palliation and the hospice team into care by mentioning these options at each transition point allows physicians to have a series of small, difficult conversations rather than “one terrible conversation that we often choose not to have,” he said.
Patients tend to learn more about the potential risks and benefits of treatment over time, so decisions should not be made at the first appointment with an oncologist, Leighl noted. Patients should also receive a written review outlining what was discussed at their appointments. Only after they have taken a couple of weeks to learn more about their disease and potential therapies, should they make decisions about their care.
Thomas J. Smith, MD, Director of Palliative Medicine at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, said he encourages oncologists to talk about coping with a poor prognosis at every transition point in the patient's care—i.e., during a change in treatment or when the prognosis changes. Integrating palliation and the hospice team into care by mentioning these options at each transition point allows physicians to have a series of small, difficult conversations rather than “one terrible conversation that we often choose not to have,” he said.
At each transition visit, or when a change in treatment or prognosis occurs, oncologists should remember to “Ask, Tell, Ask,” he said, adding that oncologists can pose the following questions to patients to improve communication:
- How much do you want to know about your cancer?
- What do you know about your cancer?
- Who would you like to include in discussions about your care?
- Would you like me to write down the important points?
- What is important to you?
- What are you hoping for?
- Now that we have discussed this, what is your understanding of your situation? (As opposed to “Do you have any questions?”)
- Who are your other doctors, so that I can communicate with them?
He also suggests remembering to fax, email, or phone the other physicians caring for the patient when there is a change in treatment or prognosis.