Just a small 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 the patients to see if they understood the gravity of their disease and their 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 had a recent and a previous discussion about their life expectancy with their doctor, according to the study.
Holly Prigerson, a co-author of the study and a co-director of the Center for Research on End-of-Life Care at Weill Cornell Medical College, said it was a shock to see how few of the patients fully understood their prognoses. She said that in some cases, patients may not understand 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," she told ABC News.
She emphasized that doctors have a hard time telling patients there's nothing left that can save their life but that patients should be given all information so they can make better decisions.
"It’s a difficult topic," said Prigerson. "Have patients understand that, if they are being offered treatment, it’s not a cure and they really have months, not years, to live."
She 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 condition.
Dr. Barbara Daly, the director of the clinical ethics program at University Hospitals Case Medical Center, said 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," she said. "Some people ... 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," she said. "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 their oncologist had a better understanding of their illness than others who didn't have such a conversation. Daly said patients can take steps to ensure they understand their overall prognosis by taking 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, she said. "If we’re going to help people, it's part of the whole movement to get people to plan for their health care ... to make their wishes known."
Because of the limited nature of the study, the findings may not be applicable to a larger population.