"These were people with highly lethal metastatic cancers that had progressed after at least one prior line of chemotherapy; their life expectancy was approximately four months from our interview," said lead researcher Dr. Holly Prigerson. She is a professor of geriatrics at Weill Cornell Medicine in New York City.
"We were astonished to learn that only 5 percent of this sample had sufficient knowledge about their illness to make informed decisions about their care," Prigerson said in a Weill Cornell news release.
The findings highlight the need for doctors to improve communication with these patients, she said.
In the study, Prigerson's team compared 178 advanced cancer patients' understanding of their disease before and after they underwent medical scans to stage their cancer. The researchers also did the same comparison before and after the patients discussed the scan results with their cancer doctor.
Before their scans, only nine of the patients understood that they were at the latter stages of an incurable cancer and had just months to live.
"Many did not know that they were at the end-stage of their illness or that their cancer was incurable. They were basically making treatment decisions in the dark," explained Prigerson, who also co-directs the Center for Research on End-of-Life Care at Weill Cornell.
But there was good news, too: The findings "show that when advanced cancer patients reported having recently discussed their life-expectancy with their oncologist, their illness understanding improved significantly," Prigerson said.
"That information may also help patients prioritize how they wish to spend the last few months of their lives, some by fulfilling 'bucket lists," she said. "Treatment choices patients make might follow from these priorities."
The study was published May 23 in the Journal of Clinical Oncology.
The U.S. National Cancer Institute has more on coping with advanced cancer.
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