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August 14, 2017

Why most patients with cancer don't understand their prognosis

Daily Briefing

Many cancer patients lack an accurate understanding of their prognosis—partly because doctors do not always communicate such information clearly, and partly because some patients don't want to hear the information, Liz Szabo reports for Kaiser Health News.

Patients don't know how long they have to live

Research has shown that many cancer patients do not have an accurate understanding of how long they have to live or whether their cancer can be put in remission.  

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For instance, a study published last year in the Journal of Clinical Oncology found that just 5 percent of cancer patients with under six months to live accurately understood their disease. And a separate study published in 2012 found that about 69 percent of patients with metastatic lung cancer and 81 percent of patients with advanced colorectal cancer believed they could be cured, though both conditions generally are considered fatal, according to Nancy Keating, one of the study's co-authors and a professor of health care policy and medicine at Harvard Medical School.

Such misunderstandings can have significant consequences for patients, Szabo reports. For example, patients who do not know how much longer they have to live often opt for therapies that can lead to unnecessary pain and suffering, research shows.

Mark Siegel, a professor of internal medicine and critical care specialist at the Yale School of Medicine, said, "It's surprising how many people end up in an ICU, critically ill and dying, without realizing they're dying." He continued, "The real question is, 'How do these patients become overly optimistic about their prognosis and what part do physicians play in this?'"


According to Szabo, research shows that oncologists sometimes fail to tell patients how long they'll likely live.  And, in other cases, doctors might be unable to give an accurate prediction. One study of 468 terminally ill cancer patients found that only 20 percent of hospice doctors were able to accurately predict their patients' life expectancy.

Jennifer Temel, director of cancer outcomes research at the Massachusetts General Hospital Cancer Center, said advanced treatment options have made it more difficult to accurately discuss prognoses with patients as they sometimes can extend life expectancy considerably for a small number of patients. However, according to Temel, doctors can't always tell which patients are likely to benefit from the new treatments.

But, according to Szabo, research has found that both doctors and patients prefer to "err on the side of optimism, assuming that a treatment will work."

Researchers also have found that when oncologists give patients information on their prognoses, the patients do not always absorb it. One reason, according to Szabo, could be that oncologists fail to communicate the information effectively. For example, a study published this year in the Journal of Oncology Practice found that oncologists spend less than 10 percent of the visit discussing patients' prognosis and, according to study co-author Toby Campbell, chief of palliative care at the University of Wisconsin School of Medicine and Public Health, doctors overused medical jargon that patients might not understand.

Further, studies suggest that some patients cannot process traumatic news even when doctors deliver it bluntly, Szabo reports. For instance, a 2011 study found that one-third of patients with advanced cancer mistakenly thought their diseases were curable even after reading material stating, "In this setting, there is no chance of cure."

Ways to bridge the divide

One way to avoid such miscommunications is for providers to craft their messages for individual patients, Richard Schilsky, CMO of American Society of Clinical Oncology (ASCO), said. During meetings with new patients, Schilsky said he asks, "What do you know about your cancer?” and "What do you want to know?"

Further, ASCO suggests that patients with advanced cancer receive palliative care within eight weeks of diagnosis. According to Szabo, research has found that early palliative care can help patients live longer, higher quality lives.

However, there's a short supply of palliative care specialists, according to Betty Ferrell, director of nursing research and education at City of Hope National Medical Center, and providers in other specialties might not have the right training for palliative care discussions.

As a way to address that issue, Ariadne Labs, a health care research center led by Atul Gawande, has created a "Serious Illness Conversation Guide" to help providers in any specialty, as well as other medical professionals, have end-of-life discussions with patients who have serious illnesses. According to Szabo, researchers have trained more than 1,700 doctors, nurses, and others on how to use the guide (Szabo, Kaiser Health News, 6/12).

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In ten years, cancer care will look remarkably different. To ensure continued success, cancer program leaders must immediately start considering how their staffing needs will change over the coming years.

Join our experts this Thursday at 3 pm ET to learn the strategies to ensure top-of-license practice, ways to leverage allied health professionals, and tactics to improve patient transitions.

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