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Bruce Mead-e, 63, who has advanced lung cancer, stands in the garden at his home in Georgetown, Del. Over four years, he has undergone two major surgeries, multiple rounds of radiation and chemotherapy. (Eileen Blass for Kaiser Health News)

Why cancer patients don’t have enough information to make decisions about their treatments

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 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.

Bruce Mead-e, left, and his husband, Chuck Mead-e, 60, had a meeting with a pastoral care provider who emphasized the bright side of things, Bruce says. It helped me feel hopeful. (Eileen Blass for Kaiser Health News)

Bruce Mead-e, left, and his husband, Chuck Mead-e, 60, had a meeting with a pastoral care provider who emphasized the bright side of things, Bruce says. It helped me feel hopeful. (Eileen Blass for Kaiser Health News)

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

Oncologists have long been criticized for failing to give patients the news they need to plan their futures. In a 2001 study, 40 percent said they would give inaccurate survival estimates — mostly painting an overly sunny picture.

Recordings of clinic visits show that oncologists devote less than 10 percent 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 percent chance that her tumor would “respond” to chemo, meaning that it would shrink. McClanahan’s mother, desperate for good news, assumed this meant she had a 25 percent chance of cure — even though her cancer was incurable. While shrinking a tumor 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 esophagus, 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 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,” 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 percent of patients based how long they expected to live on personal beliefs. Six percent based their estimates on religious beliefs, while 18 percent 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 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, of Bethany, Conn., who has since survived 7½ years. “There just seemed to be no hope. I was looking for someone to partner with. It takes a lot of energy and effort.”

Paulette Thompson-Clinton, a minister with breast cancer that has spread to her bones, stands with her husband and son. Thompson-Clinton said she fired an oncologist for being too negative. (Courtesy of Ameer Brooks/DJAmeerPhotography)

Paulette Thompson-Clinton, a minister with breast cancer that has spread to her bones, stands with her husband and son. Thompson-Clinton said she fired an oncologist for being too negative. (Courtesy of Ameer Brooks/DJAmeerPhotography)

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.”

Tailoring The Message To The Patient

Being diagnosed with breast cancer over eight years ago forced Heather Block to learn two foreign languages: the medical jargon spoken by her oncologist and the even more arcane vocabulary of insurance companies.

To avoid confusion, Block brings a notebook to every doctor’s visit, then gives her oncologist a written summary about what she sees as the next steps in treatment.

“I put it in writing so I make sure that we’re on the same page,” said Block, 54, a resident of Lewes, Del.

Like Block, some people with cancer “want to know everything.” For others, too much information is overwhelming, and they cope better knowing as little as possible, Razzak said.

Some of the women at Block’s cancer support group keep the names of their medications on cards in their handbags. It’s the only way they can remember them, she said.

That’s why it helps if doctors tailor their messages to the needs of the individual, said Dr. Richard Schilsky, chief medical officer of the American Society of Clinical Oncology. When meeting a new patient, he asks two questions: “What do you know about your cancer?” and “What do you want to know?”

These questions allow patients to take the lead, receiving only as much information as they want, Schilsky said.

Studies suggest that palliative care — which focuses on quality of life in people with serious illness and their caregivers — improves patients’ understanding of their disease.

For patients near the end of life, talking about their goals and values can help people avoid unwanted medical interventions, said Dr. Rachelle Bernacki, associate director of the Serious Illness Care Program at Ariadne Labs, a health care research center led by Dr. Atul Gawande.

In a 2015 study, patients who had end-of-life discussions were half as likely to wind up in the ICU before they died, compared to patients who didn’t have such conversations.

The American Society of Clinical Oncology, the country’s largest group of cancer specialists, now recommends that everyone with advanced cancer receive palliative care within eight weeks of diagnosis. Several studies show that early palliative care has been shown to help patients live longer and better.

Palliative care conversations include questions such as “How can we continue to hope for the best but prepare for the worst?” said Ferrell, who helped write the palliative care guidelines.

Yet palliative care specialists are in short supply, Ferrell said.

That’s why Ariadne Labs has created a “Serious Illness Conversation Guide,” meant to help all health providers lead these discussions. Bernacki and others have trained more than 1,700 doctors, nurses and others to use it.

After talking to a reporter for this story, Bruce Mead-e — the Delaware man with advanced lung cancer — decided to ask his oncologist whether his disease was curable.

Mead-e wasn’t surprised by what he heard. “It’s not like it will ever really be cured,” Mead-e said. With treatment, however, 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 and his husband, Chuck, also have met with a pastoral care provider who works with a local hospice. The experience, which included prayer, was uplifting for both of them. The pastoral care 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.”

Kaiser Health News is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with KaiserPermanente. You can view the original report on its website.

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