Making Decisions About End-of-Life Care
Study finds few terminally ill patients understand their prognosis.
By Kendall K. Morgan
Advanced cancer often forces people to face difficult decisions about which treatments to pursue. To make educated choices, these cancer patients need to grasp the nature of their illness. But a new study has found that very few cancer patients who have a life expectancy of six months or less fully understand that their cancer cannot be cured.
A study published online May 23, 2016, in the Journal of Clinical Oncology evaluated how well 178 patients with advanced cancer being treated at nine cancer centers understood their illness. All of the patients had metastatic gastrointestinal, lung or gynecological cancers or incurable stage III cancers, and all were estimated to have months, not years, left to live.
Patients were scheduled to see a doctor to get the results of a recent scan that showed how far the cancer had spread. Before their appointments, the patients were interviewed and asked four questions about their illness to determine if they understood that they had an advanced cancer, could not be cured and most likely had just months to live. They were interviewed again about six weeks later. Before they saw their doctors, just 5 percent of patients accurately answered all four questions. During the second interview, only 7 percent did.
There are consequences when patients making end-of-life decisions don’t fully understand their illness, says Holly Prigerson, co-director of the Center for Research on End-of-Life Care at Weill Cornell Medical College in New York City, who led the study. For example, patients who understand that their cancer cannot be cured with available treatments might opt for only palliative care or consider a clinical trial instead of undergoing another round of chemotherapy. “What we are saying is patients really don’t appear to know how sick they are or what the likely benefits or harms of treatment are.”
During the second interview, patients were also asked whether they had recently talked with their doctor about their prognosis or life expectancy. The approximately one in four patients who said they did showed a better understanding of their illness during the second interview than those who had not had those discussions.
But those conversations aren’t happening often enough, says Kerin Adelson, an oncologist at Yale Cancer Center and Smilow Cancer Hospital in New Haven, Connecticut. This may be, in part, because most oncologists aren’t trained in how to have difficult life-and-death discussions with their patients, she says. Doctors may also worry that conversations about life expectancy may cause their terminally ill patients to lose hope.
Yet studies have shown that understanding the nature of illness “does not destroy hope,” says Tom Smith, an oncologist and palliative care specialist at the Johns Hopkins Kimmel Cancer Center in Baltimore. “It does not make people depressed or more anxious.” Importantly, he says, when patients understand they are dying, it gives them the opportunity to make educated decisions about treatment, think about how they wish to spend the time they have, and address other concerns, including their spiritual life, family and finances.
“When you give somebody the gift of knowledge about what’s going to happen to them, they can plan,” Smith says.