When is it time to stop chemotherapy and how do you bring it up?
If you ask patients how much they want to know about their cancer prognosis, they will say overwhelmingly that they want to know the truth, says Thomas Smith, MD, from Virginia Commonwealth University.
“Our patients want us to be honest with them, compassionate and to be there with them,” Smith said at the 6th Annual Chicago Oncology Conference. “I have about 5% of my patients who don’t want to know and they’ll tell me that,” he said.
Research shows that oncologists routinely overestimate prognosis for patients. It also shows that patients who overestimate their condition are no more likely to live longer than realistic patients.
“But they are more likely to die in the ER, die in the ICU, die on a vent, or be readmitted with complications,” Smith said. “Most people wouldn’t choose this way to die.”
Studies have found that large numbers of patients don’t believe the diagnosis when it is spelled out for them. So many doctors are asking patients to fill out patient information sheets available online to facilitate discussions and see with charts where they stand statistically. Patients need this time to think about making life decisions, making DVDs for their kids, and thinking about spiritual issues, Smith says.
The discussion should be started whenever a patient is facing an incurable metastatic disease, such as metastatic breast cancer, Smith said. Other triggers for the conversation include when a patient is on his or her second or third line of chemotherapy, or has hypercalcemia.
“Remember, patients want these discussions-even though they have a very different idea of benefit and risk,” Smith said. “We have to convince doctors that this is a good thing to do.”
Holly Prigerson, PhD, Dana-Farber Cancer Institute, says what you say to the patients in these conversations is extremely important. Factors such as the patient’s ability to process this information and a patient’s reluctance to even hear it, as well as whether there is a family member in the room should all be taken under consideration in improving communication. And an end-of-life discussion can backfire if it’s not the right time or the right person, her research shows.
“Black patients don’t always consider this kind of care more aggressive,” Prigerson said. “They may consider a trial as being experimented on. There are also huge cultural differences in spirituality. Doctors think their decisions are driving the care, but often it’s the patient’s religious beliefs that are driving the decisions.”
Age and gender may also figure into how the news is interpreted, Prigerson says. Her study of end-of-life discussions found that they:
--Did not make patients more hopeless
--Didn’t affect survival
--Were associated with more realistic life expectancy
--Were associated with advanced care planning
--Resulted in less aggressive, burdensome care
But her research also found that effects of end-of-life discussions can vary by patients’ state of grief over their diagnosis. They tested the effects in the Kubler-Ross five stages of grief: disbelief, anger, yearning, depression, acceptance.
“Of all the states—the only one that really mattered for interfering in the discussion of end-of-life care was the disbelief stage of grief,” Prigerson said. At every other level, the conversation does more good than harm, she said.