Unrealistic expectations hurt cancer patients
New study shows effects of false hope
A new study,1 based on data from SUPPORT, (Study to Understand Programs and Prefer-ences for Outcomes and Risks of Treatments funded by the Robert Wood Johnson Foundation of Princeton, NJ) concludes that terminal cancer patients' overly optimistic expectations for survival shape their choices of treatments. Patients who unrealistically believed they would survive more than six months were 2.6 times as likely to choose aggressive, cure-oriented treatment instead of hospice and comfort-oriented care. While these results will not surprise hospice professionals, the study also documented that the patients with advanced, metastatic lung or liver cancer who opted for the aggressive approach didn't live any longer, but were more likely to experience negative outcomes such as hospital readmissions, resuscitation attempts, or death on a ventilator.
An accompanying editorial in the June 3 issue of JAMA2 by researchers from the Medical College of Virginia opines that doctors need to level with their terminally ill cancer patients if those patients are to make good choices. "The inescapable truth is that most patients with recurrent cancers will die as a result of the malignancy," the authors state. "Far too many patients are fighting a battle they cannot win, and not taking advantage of good end-of-life care." Therefore, doctors need to "sit by the bedside, hold patients by the hands, and tell them that there is no way to control their cancer" when that is the truth.
The study's lead author, Jane Weeks, MD, of the Dana-Farber Cancer Institute's department of adult oncology in Boston, says her study raises more questions than it answers. "We don't know whether physicians weren't being honest with their patients, or were being honest but the patients didn't hear it, either because they didn't want to or because it wasn't communicated effectively. It's clear these patients were left with unrealistic expectations, but it's a leap to say that if communication were better, then they'd make different choices."
"I'm an oncologist, and I know how these conversations go," Weeks says. "It's not uncommon for physicians not to give the true picture because they don't want to take away hope. I believe that we have to be honest with our patients. Not that certain treatment strategies are good or bad, but patients need to know, and the fact that they seem to be missing a critical piece of information is an issue."
Hospices, which typically work downstream from these conversations and don't become involved until after the physician has communicated the gravity of the patient's condition, might still find a role to play in addressing the problem, Weeks says. "The study suggests that there is room to help oncologists become better communicators."
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Another study, targeting elder nursing home residents with cancer, has found that their pain is widespread and often untreated.3 Of 13,625 cancer patients aged 65 and up residing in 1,500 nursing homes, 26% of those reporting daily pain received no analgesics at all and 16% received only aspirin or acetaminophen. African-Americans and patients over 85 are even less likely to receive adequate treatment of their pain.
"The results of our study are particularly alarming since there are ways to treat patients to greatly relieve their conditions. There is no acceptable excuse for not treating pain appropriately in terminally ill patients," says co-author Giovanni Gambassi, MD, visiting professor in the Center for Gerontology and Health Care Research at Brown University in Providence, RI. Gambassi and colleagues call for efforts to address barriers to pain management, such as the failure of physicians to prescribe pain drugs, the unwillingness of nursing homes to stock opiates, and the lack of staff to monitor their use.
1. Weeks JC, Cook EF, O'Day SJ, et al. Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA 1998; 279:1,709-1,764.
2. Smith TJ, Swisher MS. Telling the truth about terminal cancer. JAMA 1998; 279:1,746-1,748.
3. Bernabe R, Gambassi G, Lapane K, et al. Management of pain in elder patients with cancer. JAMA 1998; 279:1,877-1,882.