Posted: Oct 24, 2012 9:03 PM
Oct. 24, 2012 -- It is not a desired discussion for the doctor, and certainly not for the patient. But an overwhelming majority of people with advanced cancer are under the impression that the chemotherapy they are receiving will cure their disease when it likely will not, a new study shows.
In these scenarios, chemotherapy can alleviate pain and extend life by weeks or even months. It can't cure advanced cancer.
The disconnect may be related to how doctors discuss treatment options with people who have advanced cancer, and/or the people receiving this news may be in a state of denial about their illness.
Researchers at the Dana-Farber Cancer Institute in Boston interviewed 1,200 people with metastatic colon or lung cancer -- cancer spread to distant organs -- about their chemotherapy. Almost 70% of people with advanced lung cancer and 81% of those with advanced colorectal cancer inaccurately believed that chemotherapy could likely cure them.
The findings are published in the New England Journal of Medicine.
"We were surprised at the extent of the findings," says researcher Deborah Schrag, MD. She is an oncologist at Dana-Farber Cancer Institute. "Chemotherapy can be terrific and can be curative in some situations, but not in these cases."
Still, "a minority of patients did get it," she says. "In some physician-patient pairs, these conversations work and are necessary to help people make good choices and plans."
It is a communication issue and probably also a psychological issue. "This is hard stuff to talk about and we need to find ways for people to talk about it better." She suggests bringing someone with you to all doctor's visits, and writing things down.
Other tips include asking direct questions of your doctor. These include:
Thomas J. Smith, MD, co-authored an editorial accompanying the new study. "At every transition point, the oncologist should ask what you already know and what you want to know about your illness and your situation," says Smith, who is the Harry J. Duffey Family professor of palliative medicine at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center in Baltimore.
Not everyone wants to know everything, but many do. Smith's philosophy is "ask, tell, and ask." This means ask patients what they want to know, tell them, and then ask follow-up questions to see if they are grasping the information.
Smith also says that bringing hospice and palliative care experts on board early can make a difference in a person's end-of-life experience. "This is an extra layer of specially trained support that comes out to your house to check on you while you are still well, so they are better able to help you when you become sick."
David Straker, DO, is often called in when these difficult conversations are had. He is a New York City-based psychiatrist who helps people with cancer cope with their situation. He is also adjunct assistant clinical professor of psychiatry at Columbia University Medical Center in New York City. "A lot of doctors have a difficult time talking about death, and a lot of patients are in denial and just want to be cured," he says.
It's no one's fault, it's just human nature. "The only way to bridge these gaps is to talk openly and honestly."
When people hear they have a serious illness like advanced cancer, conversations often go straight to treatment options without discussing quality of life, says Rebecca Kirch. She is the director of Quality of Life and Survivorship for the American Cancer Society.
"There is a clear need to reboot the way we communicate," she says. "We need to ask what is important to them so they can make decisions about what treatments to pursue and how aggressive they want to be. We need to make sure they know what is involved and what it can do so they don't operate under false assumptions."
Andrew S. Epstein, MD, agrees. He is an oncologist at Memorial Sloan-Kettering Cancer Center in New York City who also teaches medical residents how to talk to patients about cancer. "The data underscore the need to do a better job about understanding who the person is, their knowledge of their medical situation, and their value system," he says.