A new study has discovered that only a small fraction of terminally-ill cancer patients fully understand their prognosis.
A research team from Memorial Sloan Kettering Cancer Center, Cornell University and Weill Cornell Medicine studied 178 cancer patients who had been diagnosed to be terminally ill. The researchers interviewed each patient to check if they knew and understood just how serious their disease was and their future prognosis.
Each patient was asked what stage of cancer they had, what their current health status was, how long they expected to live and if they had recently discussed life-expectancy with their doctor. Overall, only 5% of the patients answered all questions on their disease and prognosis correctly. On the bright side, 23% of the patients had past and recent discussions with their doctors regarding their life expectancy.
Holly Prigerson, co-author of the study and Director of the Center for Research on End of Life Care at Weill Cornell Medical Center, was “shocked” at how few patients fully understood their condition. She added that in some cases, the patients may not even hear a terminal diagnosis if their doctors avoid being upfront about their life expectancy or lack of treatment options.
Prigerson told ABC News that,
Our point is a lot of them don’t want to know, but they need to know basic information about the disease and illness and treatment options.
Prigerson emphasized that while doctors find it difficult to tell patients there’s nothing that can save their lives, it is important that patients are given all the information so they can make better decisions. “It’s a difficult topic. Have patients understand, if that they are being offered treatment, it’s not a cure. And they really have months not years to live,” she says.
The researchers pointed out that there have been prior studies debunking the idea that terminally-ill patients who are told the truth become worse than other patients who have not been given all of the information.
Dr. Barbara Daly from the University Hospitals Case Medical Center, explains that some of these life-expectancy conversations may be deemed “threatening” by patients who eventually refuse to hear it. She added that some doctors also speak in medical jargon that is difficult for the patient to understand.
Some medical institutions are now employing designated persons, like social workers or nurses, to talk to patients so they fully understand their diagnosis. Daly says that patients can take steps to ensure they are being given the truth by bringing family members to doctor’s appointments and asking direct questions.
The study is limited and may not be generalized for larger populations, but does shine a light on this aspect cancer treatment. The study was published in the Journal of Clinical Oncology.