Just 1 in 20 terminally ill cancer patients are completely aware of their prognosis, a study published Monday in the Journal of Clinical Oncology found. This means that most of them ignore their actual situation and do not really know what to expect, according to study authors from Memorial Sloan Kettering Cancer Center, Cornell University and Weill Cornel Medicine.
The lack of information prevents patients from being able to make the right decisions about their care and treatment because they do not know about the options they have.
Lead researcher Dr. Holly Prigerson, a professor of geriatrics at Weill Cornell Medicine in New York City, said in a news release that her team was impressed to learn that roughly 5 percent of the patients involved in the study were fully informed about their disease, as reported by HealthDay News.
Dr. Prigerson added that the study participants with lethal metastatic cancer had a life expectancy of about four months from the moment they were interviewed by researchers. They remark the importance of an improved communication between doctors with these patients.
The study
The research team interviewed 178 cancer patients diagnosed with a terminally ill disease to find out their level of knowledge about the magnitude of their prognosis and what it represented.
Researchers asked what stage cancer these patients had, their health situation by the moment of the interview, the life expectancy they thought they had and whether they had recently discussed their prognosis with their doctor. Just 1 in 20 answered correctly and just 23 of them had said yes to the last question.
Study: Only 5% of terminally-ill cancer patients understand prognoses. Doc/pts convos are hard but necessary: https://t.co/TUqXlm55rq @ABC
— Sloan Kettering (@sloan_kettering) May 24, 2016
Study authors compared the knowledge patients had regarding their disease before and after the participants went through medical scans to determine their stage cancer. The research team also compared their awareness before and after they discussed the scan results with their oncologists.
Before they went through scans, only 9 percent of the patients actually knew that they were at the latter stages of an incurable disease and were expected to live no longer than a few months or weeks. Prigerson said many of the study participants were “making treatment decisions in the dark,” as HealthDay News reported.
“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,” Dr. Prigerson told ABC News.
Also, the co-director of the Center for Research on End-of-Life Care at Weill Cornell Medical College, said that the piece of information they are missing could help them make the right decisions about their care based on the way they would like to spend their last few months with their loved ones.
Recommendations to improve doctor-patient communication
Dr. Barbara Daly, head of the clinical ethics program at University Hospitals Case Medical Center, said that kind of talk was difficult because patients tend to consider such information as a threat and often choose not to hear it. She admitted that some people want to know more and more, but remarked that most of them deal with information by ignoring it.
As for doctor’s communication issues, Prigerson noted it was tough for them to tell another human being that they were running out of options to save their life. She added that it was difficult to tell terminally ill patients that the remaining treatment options are not meant to cure them, but to extend their life expectancy by just a few months.
Daly pointed out that some doctors can only speak in medical terms which are not easy to understand for patients.
“It takes a high level of skill to talk to people… to present it in a way where it’s understandable,” Dr. Daly commented, according to ABC News. “Doctors… they literally forget how to talk like a normal person.”
She recommends to imitate the method used by some medical centers which have started to designate a person who is specially prepared to face that situation. A social worker or nurse practitioner can take the time to sit down with patients and clearly explain them their prognosis, Daly said.
Patients can also make an effort to get doctors explain to them so they fully understand their diagnosis and real life expectancy. Daly said people battling advanced cancer can ask a family member to talk to doctors about it by using point-blank questions such as ‘Tell me if you think the treatment is going to help.”
If the terminally ill patients are emotionally strong enough, they can directly ask doctors questions like ‘Tell me how long you think I have to live” so they can get better information and be able to make their wishes known based on their real prognosis.
Statistics
According to the National Cancer Institute, 22 million people will be diagnosed with cancer in the next two decades and 70 percent of the world’s cancer deaths occur in Asia, Africa, and Central and South America. More than a million and a half new cases will be diagnosed this year in the United States and more than 500,000 people are expected to lose the battle against the disease.
The good news is that the overall cancer death rate has declined in the United States since the early 1990s. From 2003 to 2012, cancer death rates have decreased by 1.4 percent per year among women and 1.8 percent per year among men, according to the latest Annual Report to the Nation on the Status of Cancer released in March 2016. As for children between 0 and 9 years old, this rate dropped by 2.0.
New treatment alternatives have been developed as a result of the latest technological advances in the field of medicine. Patients can only take advantage of these new options if they have a clear and constant communication with their oncologists, who will help them find out the adequate choice for their stage and current situation.
Source: ABC News