Americans say they are not squeamish about death, with an overwhelming percentage supporting informed public discussion of the issue, according to a National Journal-sponsored survey.
Roughly 3 out of 4 Americans, 78 percent, said that palliative care and end-of-life treatment should be part of the public discourse, and 93 percent said they believe such decisions should be a top priority for the U.S. health care system, according to a survey released Tuesday by the Regence Foundation and National Journal at a policy summit.
Palliative care focuses on making a patient comfortable, as opposed to seeking a cure. It can involve pain medication, physical therapy, anti-anxiety drugs, and other approaches. The decision to start palliative care is often a difficult one, typically made among family members at a time of confusion, frustration, and concern.
Most Americans agree that quality is better than quantity at the end of life, the survey found. More than 70 percent agreed with this statement: “It is more important to enhance the quality of life for seriously ill patients, even if it means a shorter life,” while 23 percent said it was more important to extend life through every medical intervention possible.
Experts speaking at the policy summit agree that the U.S. spends far too much making heroic efforts to save the lives of patients who are clearly dying.
"We are spending a lot of money at the end of life that we should not be spending. It is not providing any value. It is not making the patients any healthier, it is not making the patients any happier," said Michael Cannon of the libertarian Cato Institute.
The survey’s findings suggest many Americans want to better understand what is available to those patients who have few options left.
Again, the panelists agreed that patients want to feel that whatever decisions are made are their own. "It’s really about control," said John Rother, executive vice president of policy, strategy, and international affairs atf AARP.
“I think that’s what ‘death panels’ played into, which is, who do you trust here,” Rother added.
"If we try to have the government do anything that anyone thinks smacks of rationing or denying care to people, we are going to have people screaming about death panels and it’s not going to go anywhere," Cannon said. "The right will use that. I don’t think anyone here doubts that the right will use that as a club to beat the left senseless and they will win."
In 2009, many conservatives campaigned against Democrats and health reform by invoking taxpayer-supported “death panels.” The term holds traction even today. About 23 percent of those surveyed said they believe the health care law allows the government to make end-of-life decisions for seniors. Less than half, 40 percent, rightly said the law does not include “death panels.” Thirty-six percent answered that they did not know.
That uncertainty underscores a gap in information. Fifty-four percent said they had learned about end-of-life care from a doctor or health care provider, with many more, 75 percent, saying they received their information from family and friends. Both sources are highly trusted, the survey shows.
Less so are politicians. Only 33 percent of Americans said they trust elected officials or political candidates for accurate information on end-of-life and palliative care decisions.
Former Center for Medicare and Medicaid Services administrator Mark McClellan said people do not fully understand how the system works. ”I think what is needed here is more education,” McClellan said in a panel discussion on Tuesday.
“What is palliative care?... It depends on your own personal circumstances and preferences and what is available,” added McClellan, who now heads the Engelberg Center for Health Care Reform at the Brookings Institution.
In general, Americans give the U.S. health care system about a grade of “C,” the poll suggests, although plenty hold health care in high regard. Asked to give an overall rating to U.S. health care, 36 percent of those polled gave it a 7 to a 10 on a scale of 1 to 10, 41 percent said 4-6 and 21 percent rated it lower, with a mean rating of 5.5 percent.