Just 5% of Terminally-Ill Cancer Patients Fully Understand Prognosis, Study Finds – ABC News

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Just a fraction of terminally-ill cancer patients fully understood their prognosis according to a new small study published today in the Journal of Clinical Oncology.

Researchers from Memorial Sloan Kettering Cancer Center, Cornell University and Weill Cornell Medicine followed 178 cancer patients who were determined to be terminally ill. They interviewed each patient to see if they understood the gravity of their disease and their future prognosis.

Patients were asked what stage cancer they had, their current health status, how long they expected to live and if they had recently had a life-expectancy discussion with their doctor. Just 5 percent of the patients accurately answered all four questions about their disease and prognosis correctly. Additionally 23 percent of patients had a both recent and previous discussion about their life-expectancy with their doctor, according to the study.

Holly Prigerson, co-author and Director of the Center for Research on End of Life Care at Weill Cornell Medical Center, said it was a “shock” to see how few of the patients fully understood their prognoses. Prigerson said in some cases patients may not “hear” a terminal diagnosis if their physician avoids being blunt about their life expectancy or lack of treatment options.

“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,” said Prigerson told ABC News.

She emphasized that doctors themselves have a hard time telling a patient there’s nothing left that can save his or her life, but patients should be given all information so they can make better decisions.

“It’s a difficult topic,” said Prigerson. “Have patients understand, if that they are being offered treatment, it’s not a cure. And they really have months not years to live.”

Prigerson said previous studies have dispelled the idea that terminal patients who are told the truth fare worse than other patients who aren’t given full information about their conditions.

Dr. Barbara Daly, director of our clinical ethics program, at University Hospitals Case Medical Center, explained that these end-of-life conversations are difficult since some patients find the information itself “threatening.”

“When you look at how people deal with information, some people deal with it by wanting more and more information,” said Daly. “Some people deal with it and they see it as a threat in a sense so they don’t hear it.”

Daly also said that some doctors speak in medical terms that can be confusing for a patient.

“It takes a high level of skill to talk to people…to present it in a way where it’s understandable,” said Daly. “Doctors…they literally forget how to talk like a normal person.”

Daly said some medical centers are now using a designated person, such as a social worker or nurse practitioner, to talk to patients so that they fully understand their diagnosis and can get more time to talk about their disease.

Although the study didn’t focus on finding a solution, the authors did come to the unsurprising conclusion that the patients who recently had an end-of-life conversation with the oncologist had a better understanding of their illness than others who didn’t have this conversation. Daly said patients can take steps to ensure they understand their overall prognosis by bringing a family member to appointments and asking the doctor point blank questions.

“If the patient him or herself is comfortable saying ‘Tell me how long you think I have to live?’ or ‘Tell me if you think the treatment is going to help?'” they will get better information, Daly said. “If we’re going to help people, it’s part of the whole movement to get people to plan for their healthcare…to make their wishes known.”

Due to the limited nature of the study the findings may not be generalizable for a larger population.

Just 5% of Terminally-Ill Cancer Patients Fully Understand Prognosis, Study Finds – ABC News