Patients diagnosed with metastatic lung cancer have incurable cancers with very poor prognosis and substantial palliative care needs at the end of life, thus they are particularly likely to benefit from hospice. Nonetheless, using patient or surrogate reports and medical record documentation, our study found that only half of patients diagnosed with stage IV lung cancer, including patients who died before the interview, had discussed hospice with a physician or other health-care provider within approximately 4−7 months of diagnosis. These discussions may have occurred very near death for a considerable number of patients who had a discussion. In fact, we found that only half of patients who died within two months after the interview had discussed hospice before the interview. Patients experiencing more severe symptoms were no more likely to have a discussion than those experiencing less severe symptoms. More than three-quarters of patients who reported a preference for relieving pain over extending life had not discussed hospice with a physician. There was also evidence of “unmet demand” for end-of-life discussions – more than a quarter indicated that they had not discussed DNR preferences with their doctor but would like to do so.
Among all patients with metastatic lung cancer, black and Hispanic patients were less likely to have discussed hospice than white or Asian patients. Medicaid enrollees and non-English-speaking patients were also less likely. These findings could explain lower rates of hospice enrollment observed for these groups in other studies.10, 27, 36-39, 46, 47
Our large multi-regional study builds on findings of prior smaller studies. We found that while patients who expected to survive less than two years were substantially more likely to have discussed hospice than those who expected to live longer, reported survival expectations were considerably more optimistic than suggested by mortality statistics for patients with metastatic lung cancer. One-third of patients expected to live more than two years after their interview, whereas only approximately 6% of patients diagnosed with stage IV lung cancer are still alive two years after diagnosis.48
These results are consistent with a study by Weeks et al. that found patients with metastatic lung and colon cancer overestimated their survival probability and their estimates affected their preferences for end-of-life care.8
Our finding suggests that physicians are not communicating effectively with patients about prognosis, or perhaps that some patients may not be fully comprehending discussions of their prognosis with providers, choosing instead to maintain an optimistic attitude about their prognosis.
We found that patients who had a shorter survival time were more likely to have discussed hospice. This finding is similar to a recent study by Wright et al. that focused on general discussions about end-of-life care rather than discussions of hospice specifically.12
However, in contrast to this prior study, we found no significant differences in the likelihood of hospice discussions based on symptom severity or reported preferences for relieving pain over extending life in our multivariate analysis.
We also found that hospice discussions were less common among patients who had received chemotherapy. This may reflect patient preferences, a more aggressive approach to treatment of metastatic cancer by their providers, or reluctance to discuss hospice while patients are receiving therapy that could be life-extending because of the restrictions on such treatment imposed by the Medicare hospice benefit.
Physicians face a number of barriers to the discussion of end-of-life options and preferences with patients and their families. These conversations are often difficult and time-consuming, and time spent discussing these issues may not be adequately compensated. Also, although many patients and family members report a preference for earlier discussions of prognosis and end-of-life care,23, 49-51
some prefer to delay the timing of these discussions or not discuss these topics at all, a finding confirmed in our results.52-55
However, among patients who discussed end-of-life care with a physician, many did not have a comprehensive discussion of end-of-life issues. For example, only a third of patients who reported discussing DNR preferences had also discussed hospice, representing a missed opportunity for providers and patients.
Important strengths of our study are the use of detailed information collected from patients, surrogates and medical records for a multi-regional cohort with metastatic lung cancer; the large sample size that allows us to examine clinically-important subgroups; and the sampling of new-onset cases from defined populations. Nevertheless, our findings should be interpreted in the context of several limitations. First, we relied on a combination of patient and/or surrogate reports and medical record documentation of hospice discussions, and we may not have captured all such discussions. Some patients who had a discussion may not have remembered it or may have chosen not to report it, some surrogates may have been unaware of discussions that took place, and providers may not have routinely documented all discussions. Alternative phrasings of questions about expected survival, hospice discussions, and discussions of DNR preferences may have produced different responses from patients. Also, patients who were more open to hospice may have been more likely to report a conversation about it. However, results were similar when we used only medical record documentation in identifying discussions. Second, because surrogates were not considered reliable informants about prognosis and end-of-life preferences, questions about these issues were asked only of patients, so analyses of these variables excluded surrogate interviews. Third, the interview asked about whether a discussion occurred but little about its duration or content. We did find that almost three-quarters of those who had a discussion reported that the provider had recommended hospice. Fourth, our survey is subject to non-response bias, so the patients in our sample were not representative of all patients with metastatic lung cancer. However, demographic and clinical characteristics of the CanCORS population were similar to national estimates from the Surveillance, Epidemiology, and End Results (SEER) Program.56
Despite evidence that hospice can improve quality-of-life outcomes and satisfaction with end-of-life care,12, 13
many patients diagnosed with metastatic lung cancer did not discuss hospice with a provider within approximately seven months of diagnosis. Among those who did have a discussion, a sizeable number may have had the discussion very near death, at which point the patient may be unable to derive the full benefits of hospice. Our results suggest that many patients most in need of hospice and their physicians are not communicating effectively about end-of-life care options like hospice, and physicians may need to focus communication efforts on certain subgroups of patients, including racial/ethnic minorities, non-English speakers, and Medicaid enrollees. Incorporating a systematic assessment of patients’ need for palliative care and hospice services into routine practice could help to foster earlier communication between physicians and patients regarding hospice.57
Interventions to increase communication regarding patients’ prognosis and goals of care may promote greater use of hospice for appropriate patients.