‘How long have I got, doc?’
Cancer patients find clarity is scarce
In the past four years, Bruce Mead-e has undergone two major surgeries, multiple rounds of radiation and chemotherapy to treat his lung cancer.
In all that time, doctors never told him or his husband, Chuck, whether the cancer was curable — or likely to take Mead-e’s life.
“We haven’t asked about a cure or how much time I have,” said Mead-e, 63, of Georgetown, Del. “We haven’t asked, and he hasn’t offered. I guess we have our heads in the sand.”
As expensive new cancer treatments proliferate rapidly, patients such as Mead-e have more therapy choices than ever. Yet they are largely kept in the dark because their doctors can’t or won’t communicate clearly. Many patients compound the problem by avoiding news they don’t want to hear. 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 prescribed chemotherapy or radiation, said Rab Razzak, director of outpatient palliative medicine at Johns Hopkins Medicine in Baltimore.
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 Ira Byock, executive director at the Institute for Human Caring of Providence Health & Services, based in Torrance, Calif.
Even oncologists who prescribe treatment might not realize 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 they’ll live much longer than is realistic. Doctors often have a far more pessimistic estimate of life expectancy, said Robert Gramling at the University of Vermont College of Medicine.
In a study published last year in the Journal of Clinical
Oncology, only 5% of cancer patients with less than six months to live had an accurate understanding of their illness. Thirtyeight percent couldn’t remember ever talking to their doctor about their life expectancy.
In a study in 2012 in The New England Journal of Medicine, 69% of patients with metastatic lung cancer and 81% of people with advanced colorectal cancer thought they could be cured, although both conditions are generally fatal, said study co-author Nancy Keating, a professor of health care policy and medicine at Harvard Medical School.
Such misunderstandings can have profound consequences for patients and caregivers. Patients who don’t understand how long they have to live often choose overly aggressive therapy that can cause pointless suffering.
Nearly one-third of cancer patients end up in the intensive care unit 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 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.
New treatments have made discussions about prognosis even more complicated, said Jennifer Temel, director of cancer outcomes research at the Massachusetts General Hospital Cancer Center. Although advanced cancers are usually fatal, a fraction of patients live much longer because of these drugs.
Doctors can’t always be sure 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, 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 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, 20% of hospice doctors accurately predicted how long patients would survive. Most weren’t even close, estimating patients would live five times longer than they did. The longer doctors knew their patients, the more likely they were to get it wrong, suggesting 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. 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. She said there are no studies to help predict her chances of a cure, because she’s younger than the typical cancer patient and 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,” she 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.” LACK OF COMMUNICATION In a study in 2001, 40% of oncologists said they would give inaccurate survival estimates, mostly painting an overly sunny picture.
Recordings of clinic visits show that oncologists devote less than 10% of their time to talking about patients’ prognoses, according to a study in March in the Journal of
Oncology Practice. Researchers listened to 128 audio recordings of oncologists and patients. One doctor obscured the news that a patient’s cancer had gotten worse by transitioning to treatment choices. “The good news is there’s lots of other options,” he said.
Doctors overused medical terms patients might not understand, said co-author Toby Campbell, chief of palliative care at the University of Wisconsin School of Medicine and Public Health.
Such medical jargon gave Carolyn McClanahan’s mother false hope after she was diagnosed with terminal liver cancer at age 66. A doctor told her mother there was a 25% chance her tumor would “respond” to chemo, meaning it would shrink. McClanahan’s mother assumed this meant she had a 25% chance to be cured — even though her cancer was incurable. Though shrinking a tumor can provide relief from symptoms, it doesn’t necessarily prolong life.
The chemo caused McClanahan’s mother to develop painful ulcers in her mouth and esophagus, which prevented her from eating or drinking, said McClanahan, a former family physician and emergency medicine doctor from Jacksonville.
Her mother became dehydrated and was hospitalized for two weeks, taking in nutrition only through a tube, McClanahan said.
Her mother entered hospice care, which focuses on providing comfort at the end of life, and died two weeks later. “Thankfully, we had a couple good weeks before she died,” McClanahan said. “I’m still so angry at myself for what she went through.” SHOPPING FOR GOOD NEWS
In surveys, people with cancer overwhelmingly said they want doctors to be honest with them.
In the real world, doctors can pay a price for honesty.
Cancer patients tend to prefer doctors who deliver optimistic messages, rating them as more compassionate and trustworthy, according to a study in 2015 in JAMA Oncology.
In fact, patients with the least accurate idea of their prognosis — who mistakenly believe chemo can cure an incurable cancer — give their doctors the highest scores for communication.
“Patients want doctors to be honest with them, and they want doctors to honestly tell them that their disease can be cured,” Gramling said.
Some patients faced with traumatic news are unable to process the information, even when doctors are blunt. One-third of patients with advanced cancer in a study in 2011 mistakenly believed their disease was curable, even after reading educational material that stated, “In this setting, there is no chance of cure.”
“What doctors say and what patients hear are very different,” said Leonard Saltz, chief of the gastrointestinal oncology service at New York’s Memorial Sloan Kettering Cancer Center. “There are coping mechanisms that help people get through the day by simply not hearing that they’re going to die.”
If doctors’ words fail to get through to patients, it may be because patients value other opinions more highly. In a study in 2016 in Cancer, more than 70% of patients based how long they expected to live on personal beliefs. Six percent based their estimates on religious beliefs, and 18% based their estimates on information from their doctor.
“When the physician says, ‘We’ll give you this chemo, and it may prolong your life,’ the patient thinks, ‘I’m sure the cure is just a few more months down the road, and this will keep me alive until the cure comes along,’ ” said Betty Ferrell, director of nursing research and education at City of Hope National Medical Center in Duarte, Calif.
Oncologists said they struggle to provide accurate information, without scaring patients away.
If doctors appear too negative, “patients will go out the door and see another doctor who will tell them what they want to hear,” Saltz said.
Paulette Thompson-Clinton said she “fired” an oncologist for being too negative. Thompson-Clinton, a minister with breast cancer that has spread to her bones, said she chooses to live with “faith and optimism.”
“My oncologist said, ‘The average life span is three years, so you’ll probably live about that amount of time,’ ” said Thompson-Clinton, 49, of Bethany, Conn., who has since survived 71⁄ years. 2
Thompson-Clinton said she again finds herself at a crossroads. Her cancer treatments stopped working. She’s considering alternative medicine, including a clinic in Tijuana, Mexico. “I’m in a harder place than I’ve ever been,” Thompson-Clinton said. “I feel like I’m at the end of my options.”
Mead-e decided to ask his oncologist whether his disease is curable. He wasn’t surprised by what he heard. “It’s not like it will ever really be cured,” Mead-e said. Under treatment, the cancer “could go into remission.”
His doctor typed out the goals of treatment — to slow the growth of Mead-e’s cancer, relieve symptoms and side effects of treatment and keep him comfortable if pain arises.
Mead-e met with a pastoral care provider who works with a hospice. The provider “sees the bright side of things and doesn’t dwell on what you could have or should have done,” Mead-e said. “It helped me feel hopeful.”