Characterizing the Nature of Scan Results Discussions: Insights Into Why Patients Misunderstand Their Prognosis

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Abstract

<div class="section"> <a class="named-anchor" id="d878854e173">  </a> <h5 class="section-title" id="d878854e174">Introduction:</h5> <p id="d878854e176">Patients with incurable cancer have poor prognostic awareness. We present a detailed analysis of the dialogue between oncologists and patients in conversations with prognostic implications. </p> </div><div class="section"> <a class="named-anchor" id="d878854e178">  </a> <h5 class="section-title" id="d878854e179">Methods:</h5> <p id="d878854e181">A total of 128 audio-recorded encounters from a large multisite trial were obtained, and 64 involved scan results. We used conversation analysis, a qualitative method for studying human interaction, to analyze typical patterns and conversational devices. </p> </div><div class="section"> <a class="named-anchor" id="d878854e183">  </a> <h5 class="section-title" id="d878854e184">Results:</h5> <p id="d878854e186">Four components consistently occurred in sequential order: symptom-talk, scan-talk, treatment-talk, and logistic-talk. Six of the encounters (19%) were identified as good news, 15 (45%) as stable news, and 12 (36%) as bad news. The visit duration varied by the type of news: good, 15 minutes (07:00-29:00); stable, 17 minutes (07:00-41:00); and bad, 20 minutes (07:00-28:00). Conversational devices were common, appearing in half of recordings. Treatment-talk occupied 50% of bad-news encounters, 31% of good-news encounters, and 19% of stable-news encounters. Scan-talk occupied less than 10% of all conversations. There were only four instances of frank prognosis discussion. </p> </div><div class="section"> <a class="named-anchor" id="d878854e188">  </a> <h5 class="section-title" id="d878854e189">Conclusion:</h5> <p id="d878854e191">Oncologists and patients are complicit in constructing the typical encounter. Oncologists spend little time discussing scan results and the prognostic implications in favor of treatment-related talk. Conversational devices routinely help transition from scan-talk to detailed discussions about treatment options. We observed an opportunity to create prognosis-talk after scan-talk with a new conversational device, the question “Would you like to talk about what this means?” as the oncologist seeks permission to disclose prognostic information while ceding control to the patient. </p> </div>

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Patients' expectations about effects of chemotherapy for advanced cancer.

Jane Weeks, Paul Catalano, Angel Cronin … (2012)

Chemotherapy for metastatic lung or colorectal cancer can prolong life by weeks or months and may provide palliation, but it is not curative. 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. Overall, 69% of patients with lung cancer and 81% of those with colorectal cancer did not report understanding that chemotherapy was not at all likely to cure their cancer. In multivariable logistic regression, the risk of reporting inaccurate beliefs about chemotherapy was higher among patients with colorectal cancer, as compared with those with lung cancer (odds ratio, 1.75; 95% confidence interval [CI], 1.29 to 2.37); among nonwhite and Hispanic patients, as compared with non-Hispanic white patients (odds ratio for Hispanic patients, 2.82; 95% CI, 1.51 to 5.27; odds ratio for black patients, 2.93; 95% CI, 1.80 to 4.78); and among patients who rated their communication with their physician very favorably, as compared with less favorably (odds ratio for highest third vs. lowest third, 1.90; 95% CI, 1.33 to 2.72). Educational level, functional status, and the patient's role in decision making were not associated with such inaccurate beliefs about chemotherapy. Many patients receiving chemotherapy for incurable cancers may not understand that chemotherapy is unlikely to be curative, which could compromise their ability to make informed treatment decisions that are consonant with their preferences. Physicians may be able to improve patients' understanding, but this may come at the cost of patients' satisfaction with them. (Funded by the National Cancer Institute and others.).

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G M Leydon, M. Boulton, C Moynihan … (2000)

To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness. Qualitative study based on in-depth interviews. Outpatient oncology clinics at a London cancer centre. 17 patients with cancer diagnosed in previous 6 months. Analysis of patients' narratives to identify key themes and categories. While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information: faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources-including information and explanations-had to be shared and meant that limited information was accepted as inevitable. Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.

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Cancer patient preferences for communication of prognosis in the metastatic setting.

S Pendlebury, Sing Lo, E Lobb … (2004)

To identify preferences for and predictors of prognostic information among patients with incurable metastatic cancer. One hundred twenty-six metastatic cancer patients seeing 30 oncologists at 12 outpatient clinics in New South Wales, Australia, participated in the study. Patients were diagnosed with incurable metastatic disease within 6 weeks to 6 months of recruitment. Patients completed a survey eliciting their preferences for prognostic information, including type, quantity, mode, and timing of presentation; anxiety and depression levels; and information and involvement preferences. More than 95% of patients wanted information about side effects, symptoms, and treatment options. The majority wanted to know longest survival time with treatment (85%), 5-year survival rates (80%), and average survival (81%). Words and numbers were preferred over pie charts or graphs. Fifty-nine percent (59%) wanted to discuss expected survival when first diagnosed with metastatic disease. Thirty-eight percent and 44% wanted to negotiate when expected survival and dying, respectively, were discussed. Patients with higher depression scores were more likely to want to know shortest time to live without treatment (P =.047) and average survival (P =.049). Lower depression levels were significantly associated with never wanting to discuss expected survival (P =.03). Patients with an expected survival of years were more likely to want to discuss life expectancy when first diagnosed with metastases (P =.02). Most metastatic cancer patients want detailed prognostic information but prefer to negotiate the extent, format, and timing of the information they receive from their oncologists.