A cancer diagnosis can be the most stressful moment a person ever experiences. At that moment life substantially changes, priorities re-align and new questions occur. Many who are diagnosed with cancer ask about treatment options, other tests needed, and second opinions.
One question often asked, however, is one doctors are sometimes reluctant to answer: “How long have I got?”
The American Cancer Society offers support on what questions patients should ask their doctors after receiving a cancer diagnosis, both generally and for specific cancer types. However, when asked about how much time a patient has left, doctors often keep patients in the dark.
A June 9, 2017 article in USA TODAY states many cancer patients don’t get vital information about their cancer from their doctors, including whether or not their condition is curable or how much time they have left. Dr. Rab Razzak, director of outpatient palliative medicine at Baltimore’s Johns Hopkins Medicine, said scores of cancer patients lack the knowledge required for informed decisions about their treatment – or how to spend the time they have left.
“I don’t think they recognize the enormity of it,” Razzak said.
He said even oncologists, cancer specialists who guide patients through the diagnosis and treatment process, don’t realize their patients lack important information.
A 2016 study, Discussions of Life Expectancy and Changes in Illness Understanding in Patients With Advanced Cancer (Epstein), surveyed several end-stage cancer patients (those with fewer than six months to live) on what they knew about their disease and impending deaths. The researchers found very few terminal patients accurately understood the severity of their illness.
The study, funded by the National Cancer Institute examining end-of-life processes, found only 1 in 20 terminally ill cancer patients had sufficient understanding about their prognosis or the purpose underlying their cancer treatment.
“We were shocked to find only 5% of patients responded correctly to all four questions, which would imply they had sufficient knowledge about their illness to make informed decisions about their care,” said researcher Holly Prigerson.
“This is not a conversation anyone wants to have, so it’s easier—for both the oncologist and the patient—to focus on hope and rosy expectations and what may be hype regarding expected treatment outcomes rather than talk about brutal truths of a poor prognosis. The fear of making patients feel hopeless gets in the way of realism and, as a consequence, denies patients the right to make informed choices about how they want to live their final months. It is a ‘conspiracy of silence,’” Prigerson said.
A 2012 study published in the New England Journal of Medicine, Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer (Weeks), shines even more light on the issue, showing 69% of metastatic lung cancer patients and 81% of advanced colorectal cancer patients thought they could still be cured, even though doctors generally consider those conditions fatal.
These misconceptions can lead to patients pursuing overly aggressive but ultimately futile treatments, wasting time that could be better spent enjoying what few months they have left.
Researchers identified several causes of this information deficit, ranging from doctors wanting to deliver good news and hope to patients unwilling to accept pessimistic outlooks. Patients will often “shop around” for a positive prognosis. Studies have also found varying cultural attitudes toward discussing prognoses and impending death, as well as simply uncertainty about the exact amount of time remaining.
Ariadne Labs and the Dana-Farber Cancer Institute recently issued a conversation guide for doctors speaking to cancer patients after diagnosis. The guide focuses on expanding the patient’s understanding of their illness, how much time they have left and what they should expect going forward. Other questions center around the patient’s goals were their health to worsen, their fears and worries about their future, and what the patient will withstand for the possibility of gaining more time.
It’s incumbent upon both doctors and patients to be as open and forthright about cancer diagnoses as possible. Whether it’s about curing the disease, beating it into remission or simply improving quality of life, honesty and openness are the key to reaching the best outcome possible – whatever that may be.