I know this is long but I think it is a very important topic.
Two recent studies have revealed that between 60% and 80% of patients receiving palliative therapy with radiation or chemotherapy for incurable cancer do not understand that the intent of the treatment is palliative, not cure. The studies highlight a communication chasm between doctors and patients, but oncologists say it is unclear who is to blame. The gap surprised some clinicians.
“The rates, to me, were astonishingly high. I didn’t expect it to be zero, but based on prior, smaller studies, I expected it to be more like one-third of the patients,” said Jane Weeks, MD, an oncologist at Dana-Farber Cancer Institute in Boston, who was involved with both investigations.
Both studies relied on data gathered between 2003 and 2005 from CanCORS (Cancer Care Outcomes Research and Surveillance Consortium), a multicenter prospective cohort study of patients with lung or colorectal cancers (CRC). The Consortium includes 15 Veterans Affairs facilities and five large health maintenance organizations in five geographic regions of the United States—northern California, Los Angeles County, North Carolina, Iowa and Alabama.
In the study led by Dr. Weeks, reported in The New England Journal of Medicine (NEJM 2012;367:1616-1625, PMID: 23094723), researchers analyzed survey data from 1,193 patients in CanCORS who received chemotherapy for newly diagnosed metastatic lung cancer or CRC. Responses were evaluated based on the following three-part question: After talking with your doctors about chemotherapy, how likely did you think it was that chemotherapy would (a) help you live longer, (b) help you with problems you were having from cancer or (c) cure your cancer? Respondents could answer one of five ways: very likely, somewhat likely, a little likely, not at all likely, or don’t know/refuse to answer. Overall, 69% of patients with lung cancer and 81% of patients with CRC said they did not understand that chemotherapy was not at all likely to cure their cancer.
In a second study, reported at the 2012 annual meeting of the American Society for Radiation Oncology (ASTRO; abstract 4), investigators analyzed survey data from 384 patients diagnosed with stage IIIB with malignant effusion or stage IV lung cancer who had received palliative radiation therapy. Aileen Chen, MD, MPP, a radiation oncologist at Brigham and Women’s Hospital and Dana-Farber Cancer Institute in Boston, who presented the study, pointed out that stage IIIB with malignant effusion is now considered stage IV by the American Joint Committee on Cancer. Researchers analyzed answers to the same question used in the NEJM study, but with the word radiation substituted for chemotherapy.
The researchers found that 64% of patients did not understand that radiation was not at all likely to cure their disease. Nonwhites were more likely to believe that radiation might be curative (blacks, odds ratio [OR], 1.5; other nonwhites, OR, 3.3). Of the 384 patients, 70% were white and 14% were black. Additionally, older patients were more likely to have inaccurate beliefs, and patients whose surveys were completed by surrogates were less likely to have inaccurate beliefs.
The communication disconnect can cause several problems. “Patients with unrealistic expectations are less able to make informed decisions about end-of-life care and may therefore pursue more intensive therapies,” said Dr. Chen. Dr. Weeks pointed out that studies show that when end-of-life discussions happen early, patients have a better quality of life, are less likely to receive futile medical care and are more likely to die at home, if that is their desire. Patients who don’t understand their true prognosis also may delay getting their affairs in order.
The researchers admitted that the studies were limited because they did not ascertain the underlying reasons for patients’ expectations. According to Robert Arnold, MD, the chief of Palliative Care and Medical Ethics at the University of Pittsburgh School of Medicine, the problem with these types of studies is that they “often don’t distinguish between what people think and how they came to that thinking.
“Is the problem that the patient didn’t hear what the doctor said, the doctor didn’t say it, or is the problem that the doctor said it and the patient heard it, but they don’t sort of believe it. I may have heard the doctor say ‘this is what happens to most people,’ but I don’t think I’m most people. I am way better than most people,’” said Dr. Arnold. “I think we need to try to be clear about where the communication breaks down, and the problem is we don’t know.”
If an oncologist discovers that a patient doesn’t agree with what he or she said, action should be taken. “In that case, we can say, ‘I see you are really hoping it gets better, and I wonder if you are willing to think about if it doesn’t get better,’” suggested Dr. Arnold.
He said studies have shown that when doctors present things in a positive framework, patients are less likely to hear bad news. If a doctor says, “I can’t cure it, but there is a lot we can do,” then patients spend time focusing on the “lot we can do” and are less likely to hear the bad news.
Dr. Weeks thinks a major factor contributing to the communication gap is that doctors are stating the facts, but not reinforcing them. “My strong hunch is that the oncologist tells the patient at the time they are initially discussing chemotherapy that it is not going to be curative, but that they don’t dwell on it and they don’t come back to it later in time,” she said. “They don’t reinforce that message, and they allow the patient to slip into thinking that chemotherapy might be curative.”
She said another problem could be the use of ambiguous language. “The physician will talk about having a wonderful response to chemotherapy and that is actually quite a technical term that means tumor shrinkage. It doesn’t mean cure,” explained Dr. Weeks. “But somebody who isn’t trained in medical oncology would hear that and say ‘I’m being cured.’ If a physician doesn’t make a point of being clearer and reinforcing what is really happening, it is not hard to understand how the misunderstanding develops.”
David Hui, MD, an assistant professor in the Department of Palliative Care and Rehabilitation Medicine at the University of Texas MD Anderson Cancer Center in Houston, believes the two CanCORS studies are more representative of what is going on in the community setting than other smaller studies that have shown the communication regarding palliative therapy is not that bad. He pointed out that given the high prevalence of gaps in communication, oncologists should routinely assess patients’ understanding.
“A good way to start is to ask patients, ‘What is your understanding of your illness? Based on what we discussed earlier, what do you think we can achieve with this treatment?’” said Dr. Hui. “Understanding whether the treatment is of a curative nature or not is important because patients make decisions based on the perceived benefit.”
Dr. Arnold said that researchers should launch studies to identify the root of the problem. “The problem with both of those studies is that they tell you what the patient heard. They don’t tell you what was said or what did the doctor think they were saying,” he said. “Part of what you have to do is triangulate all three pieces of information. These studies tell us there is a problem. What the solution is to the problem, how to fix that problem … [we] don’t know that. If you don’t know what happened in the black box, you don’t know what to change.”
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
5/12 CT ext. new mets
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace