Not Discussing End-Stage Disease Prolongs Futile, Costly, and Painful Care

Since $1 of every $10 spent on healthcare is spent during the patient's last year of life—and for Medicare that's $2.70 of every $10 spent—it's important to know just when practitioners should start discussing a shift from treatment to palliative care.

"Hospitals want to provide high quality care to their patients at the end of life," says Walling. "There's almost no hospital in the country that wants to keep patients in adverse health states that the patients and families wouldn't want just to maximize the bill," she says.

Then why does it take so long for doctors to have these discussions? Neil Wenger, MD, a natural scientist at RAND and UCLA physician, says it's hard to say, but is a combination of "the desires and expectations of patients and families, and practice patterns that are learned and taught, and the fact that we really don't have enough data to say what optimal levels of care spending are. It's probably somewhere between the most expensive and the least."

Wenger says that the simple 13-step quality indicator guideline developed at UCLA is the only one of its kind. "We don't think there's anything like this available anywhere else," he says. "The goal would be for other hospitals to take up the challenge to evaluate their care."

The study has some limitations, including the fact that the average age was a relatively young 62, an age at which treatment might be understandably more aggressive and discussions of death postponed. Also, 25% were on a transplant list.

George A. Godlewski, associate vice president of Geisinger Health System's Divisions of Quality and Safety and Psychiatry, says he hadn't read the journal article but is well aware of the need for such process measures to evaluate quality of care for terminally ill patients.

"Are people (patients and family) fully informed? Are options for care reviewed and discussed? We don't have that, but we're hoping to get there." He adds that Geisinger has convened a recently launched a small group to focus on critical care medicine in the intensive care unit. The group's goal is to identify the steps of care that are important, and when should certain discussions take place.

"We have a long way to go, but we're beginning to get better at it," he says.