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. RESULTS 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. CONCLUSIONS 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.)
A B S T R A C T PurposePhysicians have an ethical obligation to honor patients' values for care, including at the end of life (EOL). We sought to evaluate factors that help patients to receive care consistent with their preferences. MethodsThis was a longitudinal multi-institutional cohort study. We measured baseline preferences for life-extending versus symptom-directed care and actual EOL care received in 325 patients with advanced cancer. We also measured associated sociodemographic, health, and communication characteristics, including EOL discussions between patients and physicians. ResultsPreferences were assessed a median of 125 days before death. Overall, 68% of patients (220 of 325 patients) received EOL care consistent with baseline preferences. The proportion was slightly higher among patients who recognized they were terminally ill (74%, 90 of 121 patients; P ϭ .05). Patients who recognized their terminal illness were more likely to prefer symptom-directed care (83%, 100 of 121 patients; v 66%, 127 of 191 patients; P ϭ .003). However, some patients who were aware they were terminally ill wished to receive life-extending care (17%, 21 of 121 patients). Patients who reported having discussed their wishes for EOL care with a physician (39%, 125 of 322 patients) were more likely to receive care that was consistent with their preferences, both in the full sample (odds ratio [OR] ϭ 2.26; P Ͻ .0001) and among patients who were aware they were terminally ill (OR ϭ 3.94; P ϭ .0005). Among patients who received no life-extending measures, physical distress was lower (mean score, 3.1 v 4.1; P ϭ .03) among patients for whom such care was consistent with preferences. ConclusionPatients with cancer are more likely to receive EOL care that is consistent with their preferences when they have had the opportunity to discuss their wishes for EOL care with a physician.
A B S T R A C T PurposeNational guidelines recommend that discussions about end-of-life (EOL) care planning happen early for patients with incurable cancer. We do not know whether earlier EOL discussions lead to less aggressive care near death. We sought to evaluate the extent to which EOL discussion characteristics, such as timing, involved providers, and location, are associated with the aggressiveness of care received near death. Patients and MethodsWe studied 1,231 patients with stage IV lung or colorectal cancer in the Cancer Care Outcomes Research and Surveillance Consortium, a population-and health system-based prospective cohort study, who died during the 15-month study period but survived at least 1 month. Our main outcome measure was the aggressiveness of EOL care received. ResultsNearly half of patients received at least one marker of aggressive EOL care, including chemotherapy in the last 14 days of life (16%), intensive care unit care in the last 30 days of life (9%), and acute hospital-based care in the last 30 days of life (40%). Patients who had EOL discussions with their physicians before the last 30 days of life were less likely to receive aggressive measures at EOL, including chemotherapy (P ϭ .003), acute care (P Ͻ .001), or any aggressive care (P Ͻ .001). Such patients were also more likely to receive hospice care (P Ͻ .001) and to have hospice initiated earlier (P Ͻ .001). ConclusionEarly EOL discussions are prospectively associated with less aggressive care and greater use of hospice at EOL.
Although many parents find prognostic information about their children with cancer upsetting, parents who are upset by prognostic information are no less likely to want it. The upsetting nature of prognostic information does not diminish parents' desire for such information, its importance to decision making, or parents' sense of hope.
Background National guidelines recommend that physicians discuss end-of-life (EOL) care planning with cancer patients whose life expectancy is less than one year. Objective To evaluate the incidence of EOL discussions for patients with stage IV lung or colorectal cancer, and where, when, and with whom discussions take place. Design Prospective cohort study of patients diagnosed with lung or colorectal cancer from 2003 to 2005. Setting Subjects lived in Northern California, Los Angeles County, North Carolina, Iowa, or Alabama, or received care in one of five large health maintenance organizations or one of fifteen Veteran’s Health Administration sites. Patients 2155 patients with stage IV lung or colorectal cancer. Measurements EOL discussions reported in patient and surrogate interviews or documented in medical records through 15 months after diagnosis. Results 73% of patients had EOL discussions identified by at least one source. Among patients who died during follow-up (N=1470), 87% had EOL discussions, versus 41% of patients who were alive at the end of follow-up (N=685). Among first EOL discussions documented in records (N=1081), 55% occurred in the hospital. Oncologists documented EOL discussions with only 27% of their patients. Among patients with documented EOL discussions who died during follow-up (N=959), discussions took place a median of 33 days before death. Limitations The depth and quality of EOL discussions was not evaluated. Much of the information about discussions came from surrogates of patients who died before baseline interviews could be obtained. Conclusions Although most patients with stage IV lung or colorectal cancer have discussions with physicians about EOL care planning before death, many discussions occur during acute hospital care, with non-oncology providers, and late in the course of illness.
Although physicians sometimes limit prognostic information to preserve hope, we found no evidence that prognostic disclosure makes parents less hopeful. Instead, disclosure of prognosis by the physician can support hope, even when the prognosis is poor.
For parents of children who die of cancer, doctor-patient communication is the principal determinant of high-quality physician care. In contrast, physicians' care ratings depend on biomedical rather than relational aspects of care.
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