‘How long have I got, doc?’
Why many cancer patients don’t have the answers they want.
IN the past four years, Bruce Mead-e has undergone two major surgeries, multiple rounds of radiation and chemotherapy to treat his lung cancer.
Yet in all that time, doctors never told him 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. “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, United States.
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, California.
Even the oncologists who prescribe cancer treatment might not realise that so many of their patients are clueless about what’s going on. “I don’t think they recognise 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% 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% of patients with metastatic lung cancer and 81% 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.
“It’s surprising how many people end up in an ICU, critically ill and dying, without realising 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. “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.
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% 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.”
Saying a lot, but communicating little
Oncologists have long been criticised for failing to give patients the news they need to plan their futures.
In a 2001 study, 40% 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’ prognosis, according to a March study in the Journal of Oncology Practice, in which researchers listened to 128 audio recordings of oncologists and patients.
One doctor in the study obscured the news that a patient’s cancer had gotten worse by quickly transitioning to treatment choices. “The good news is there’s lots of other options here,” he said.
Doctors in the study also overused medical terms that patients might not understand, said co-author Dr 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 that there was a 25% chance that her tumour would “respond” to chemo, meaning that it would shrink. McClanahan’s mother, desperate for good news, assumed this meant she had a 25% chance of cure – even though her cancer was incurable.
While shrinking a tumour can provide some relief from symptoms, it doesn’t necessarily prolong life.
The chemo caused McClanahan’s mother to develop painful ulcers in her mouth and oesophagus, which prevented her from eating or drinking, said McClanahan, a former family physician and emergency medicine doctor from Jacksonville, Fla.
Her mother became dehydrated and was hospitalised 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,” said McClanahan, who now works as a financial planner. “I’m still so angry at myself for what she went through.”
Shopping for good news
In surveys, people with cancer overwhelmingly say 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 2015 study in JAMA Oncology.
In fact, patients with the least accurate idea of their prognosis – who mistakenly believe that 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.
When faced with traumatic news, some patients are unable to process the information, even when doctors are blunt, studies suggest.
One-third of patients with advanced cancer in a small 2011 study 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 Dr 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 2016 study 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, while 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, California.
Oncologists say 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, who has since survived seven years. “There just seemed to be no hope. I was looking for someone to partner with. It takes a lot of energy and effort.”
Today, Thompson-Clinton said she again finds herself at a crossroads. Her previous cancer treatments have stopped working, and her doctor has recommended intravenous chemotherapy – something she doesn’t want to do. 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.” – Kaiser Health News/ Tribune News Service
Mead-e, who has advanced lung cancer, has undergone two major surgeries, multiple rounds of radiation, and chemotherapy over four years.