Yet in all that time, doctors never told him or his husband whether the cancer was curable — or likely to take Mead-e’s life.
“We haven’t asked about cure or how much time I have,” said Mead-e, 63, of Georgetown, Del., in a May interview. “We haven’t asked, and he hasn’t offered. I guess we have our heads in the sand.”
At a time when expensive new cancer treatments are proliferating rapidly, patients such as Mead-e have more therapy choices than ever before. Yet patients like him are largely kept in the dark because their doctors either can’t or won’t communicate clearly. Many patients compound the problem by avoiding news they don’t want to hear.
Surprisingly, huge numbers of cancer patients lack basic information, such as how long they can expect to live, whether their condition is curable or why they’re being prescribed chemotherapy or radiation, said Dr. Rab Razzak, director of outpatient palliative medicine at Johns Hopkins Medicine in Baltimore.
The result: People with advanced cancer don’t know enough about their disease to make informed decisions about treatment or how they want to spend their remaining time.
“Avoiding these issues is really irresponsible,” said Dr. Ira Byock, executive director at the Institute for Human Caring of Providence Health & Services, based in Torrance, Calif.
Even the oncologists who prescribe cancer treatment might not realize that so many of their patients are clueless about what’s going on. “I don’t think they recognize the enormity of it,” Razzak said.
Some patients approaching the end of life are in denial, assuming that they’ll live much longer than is realistic. Yet doctors often have a far more pessimistic estimate of their life expectancy, said Dr. Robert Gramling, the Holly & Bob Miller chair in palliative medicine at the University of Vermont College of Medicine.
In a study published last year in the Journal of Clinical Oncology, only 5 percent of cancer patients with less than six months to live had an accurate understanding of their illness. Thirty-eight percent couldn’t remember ever talking to their doctor about their life expectancy.
And in a 2012 study in The New England Journal of Medicine, 69 percent of patients with metastatic lung cancer and 81 percent of people with advanced colorectal cancer thought they could still be cured, although both conditions are generally considered fatal, said study co-author Dr. Nancy Keating, a professor of health care policy and medicine at Harvard Medical School.
Such misunderstandings can have profound consequences for patients and their caregivers. Patients who don’t understand how long they have to live often choose overly aggressive therapy that can cause pointless pain and suffering.
Nearly one-third of cancer patients end up in the intensive care unit, or ICU, in the last month of life, according to the Dartmouth Atlas of Health Care. Although intensive care can save the lives of younger, healthier people, it doesn’t improve or lengthen the lives of people with terminal cancer.
“It’s surprising how many people end up in an ICU, critically ill and dying, without realizing they’re dying,” said Dr. Mark Siegel, a professor of internal medicine and critical care specialist at the Yale School of Medicine.
These last-ditch measures to extend life can leave families with extended grief and trauma, Siegel said. Although almost half of Americans use hospice care — which focuses on comfort care at the end of life — studies show that many people enter hospice very late in their illness, often only a week before death.
“The real question is, ‘How do these patients become overly optimistic about their prognosis and what part do physicians play in this?’” Siegel said. “What do physicians tell the patients? What are patients hearing?”
In some cases, oncologists fail to tell patients how long they have to live. In others, patients are clearly told their prognosis, but are too overwhelmed to absorb the information. Some doctors and patients enter into an implicit agreement to avoid talking about dying, a pact that researchers have described as “necessary collusion.”
New treatments have made discussions about prognosis even more complicated, said Dr. Jennifer Temel, director of cancer outcomes research at the Massachusetts General Hospital Cancer Center. Although advanced cancers are still usually fatal, a fraction of patients are living much longer due to these drugs.
Doctors can’t always be sure, though, which patients are likely to benefit, Temel said. Many patients who put their hopes in new therapies end up delaying critical decisions about end-of-life care, said Holly Prigerson, co-director of the Center for Research on End-of-Life Care at Weill Cornell Medical College in New York.
“All of these changes are requiring us to rethink how we talk to patients,” Temel said.
The Optimism Bias
When in doubt, both doctors and patients tend to err on the side of optimism, assuming that a treatment will work.
Delivering bad news, particularly to longtime patients, can be painful, said Dr. Ronald Adelman, co-chief of geriatrics and palliative medicine at New York-Presbyterian Hospital/Weill Cornell Medical Center.
“They have a long, connected relationship and it’s very hard to not be able to deliver what the patients are hoping for,” Adelman said.
Even doctors who want to be honest are often unable to forecast how long patients will live.
In a study of 468 terminally ill cancer patients, only 20 percent of hospice doctors accurately predicted how long patients would survive. Most weren’t even close, estimating that patients would live five times longer than they did.
Significantly, the longer that doctors knew their patients, the more likely they were to get it wrong, suggesting that emotional bonds clouded doctors’ thinking.
Even patients with early, curable cancers often lack key information.
Nicole Wesolowski was diagnosed with early rectal cancer last year at age 27, and has endured surgery and chemotherapy in the hopes of curing it. But she said her doctor has never told her what the chances are that her cancer will come back.
“Doctors don’t want to tell you something they don’t know,” said Wesolowski, of New York City, who said there are no studies to help predict her chances of cure, both because she’s so much younger than the typical cancer patient and because she received an experimental treatment. “I don’t think [my doctor] has an answer. It might be better if I don’t know.”
For Wesolowski, her doctor’s demeanor tells her all she needs to know.
“My surgeon seems very confident,” Wesolowski said. “Statistics aren’t going to help me be less afraid. … I’m just going to trust the people who have gotten me so far in such a small amount of time.”
Saying A Lot, But Communicating Little