Cancer Patients Ask ‘How Long Have I Got, Doc?’

cancerOncologists 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.”

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.”

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Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

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