In a startling Yale study, an overwhelming majority of the participants said they wouldn't opt for life-sustaining treatment if it were to seriously impair their ability to function.
These findings, which appear in tomorrow's New England Journal of Medicine, suggest that the focus of treatments for the terminally ill should shift from specific technological or medical interventions to how the patient wants to live.
"This study tells us that what matters to patients is not only what the outcome is, but how burdensome the treatment is and how likely the outcome is," says Dr. Steven Pantilat, assistant clinical professor of medicine at the University of California, San Francisco, and director of UCSF's Comfort Care Suites, a two-bed inpatient acute palliative care unit.
"The other important message of this study is patients think in terms of outcomes, in terms of what they can do," Pantilat adds. "They don't think about mechanical ventilation or, 'Do I want antibiotics?'"
"We need to talk to patients in their language and then we need to interpret how the treatments help patients achieve their goals," he says.
Typically, health-care professionals ask seriously ill patients what their preferences are on specific life-sustaining treatments, such as a breathing machine or dialysis, not what the treatments will mean for their quality of life.
"Studies have shown, when doctors talk to patients about what they want, they use the 'Chinese menu' approach. 'Would you want a ventilator, a feeding tube, dialysis.' Those questions, I think, completely ignore what's most important to patients, which is, what's the outcome going to be, what am I going to look like at the end of the therapy," says Dr. Terri Fried, lead author of the study and an associate professor of medicine at Yale University.
"We have to develop a new way of talking to patients so that, rather than focusing on myriad interventions, we focus on outcomes and attitudes towards outcomes. That gives physicians the freedom to pick the intervention to get the patient to where they want to be," Fried says.
Fried and her team identified 226 people over the age of 60 who had a limited life expectancy because of cancer, congestive heart failure or chronic obstructive pulmonary disease.
They were all interviewed at home and asked whether they would want to receive various treatments with differing outcomes. They were also told that forgoing treatment would mean dying of their disease.
As it turned out, very few patients said they would choose life-sustaining treatments if that meant severe functional or cognitive impairment.
When told that "low burden treatment" (defined as a brief hospitalization with basic tests) would leave their current state of health unchanged, 98.7 percent said they would choose such treatment.
When those same people were then asked if they'd be willing to undergo a "high burden treatment" that would also leave their current state of health unchanged (involving a month or so in the hospital with many tests and intrusive interventions such as dialysis or surgery), 87.6 percent said they would.
But when the outcome scenario for the "low burden treatment" was changed to severe cognitive impairment (including not being able to recognize family members), 88.8 percent said they would decline the treatment.
"Most surprising to me was the fact that, when the outcome was expressed in terms of surviving in the current state versus [the risk of] dying, people were willing to risk a very high likelihood of death," Fried says.
Although life is rarely as straightforward as a study, the findings of a complex study such as this one should have a place in the "real world," Pantilat says.
"Our hope is that this will change how advance directives (such as living wills) are done," Fried says. "Our future work is designing new methods of communication and seeing if it can be more effective."