Still, it's not surprising that most care is incurred when a patient is sickest, Leavitt agrees. After all, you use more gas when you're driving than when you're walking. But he wonders: If doctors were compensated for time helping families work through the issues, including how much an expensive treatment or test was likely to benefit someone, would they make different and perhaps less expensive choices?
Dr. Michael Galindo, hospitalist and palliative care medical director for Intermountain Medical Center and a hospice, co-chairs the Intermountain Guidance Council on Compassionate Strategies for Advanced Illness. He suggests asking hard questions of healthcare providers: Would you be surprised if I (or my loved one) were to die in the next year or two? Why? What kind of plans should we make in case the illness gets worse? What should we look for to tell us it is getting worse? There are questions to ask about a specific illness, as well. The most important may be what it is hoped a proposed treatment will do. "Will it cure me? Will it slow down the disease and by how much? Or do you simply hope it will make me more comfortable/functional?"
The Physician Order for Life-Sustaining Treatment (POLST), worked out between the individual and the doctor, is the "most effective way we have to keep from getting expensive treatments you don't want," says Maureen Henry, executive director of the Utah Commission on Aging. For informed decision making, the conversation needs to be clear in terms of expected benefits and what kind of care would be involved. That can help someone sort out whether an aggressive treatment that offers little hope is wanted or not. She saw the power firsthand when Kemp, her mother-in-law, rejected invasive and expensive treatments that would at best have prolonged her dying process.
But experts warn that making health care decisions on cost can be tricky. That's when loaded words like "rationing" come up. And some of the numbers that are used should come with an explanation. Dartmouth Medical School released an oft-cited study in 2008 of health care costs at life's end that showed big disparities exist among hospitals in different regions of the U.S. For example, UCLA Medical Center in Los Angeles averaged $93,842 per capita, while those at the Mayo Clinic in Rochester, Minn., cost $53,432. The implication is the money was wasted. But they only looked at cases where the patients died. Critics argue that sometimes you don't know if someone will live until you see if they do, in fact, live.
Whether an expensive treatment seems like a good investment may boil down to whether the money's being spent on someone you know. Leavitt cites an aggressive cancer whose treatment cost averages more than a quarter-million dollars. It gives patients about 17 months who would normally otherwise die in about five. Would he try the treatment if he could get another year?
"The answer is yes I would if I could come up with the money, I would. It means I could spend time with my family. I could do other things I would like to do. But then it dawned on me: Because you might be able to do that, does it mean every American has a right to do that? And if that's true, can we afford it as a country or will it break us?
"We are at a time right now where we are facing pressures we have never faced before. We have never had our bond ratings reduced. We've never had a trillion-and-a-half dollar deficit. We've never had $15 trillion in debt. We are facing this with a reality now that is unlike anything we've faced before," Leavitt says.
Still, he agrees with other experts who spoke to the Deseret News: As a society, we probably don't want government deciding who gets what care when.
Families pressured, too
It's not just the government that struggles financially with end-of-life costs. Add in funeral and other costs and families can reel. Nationwide, more families are asking their county governments for help with low-cost or indigent burials, for instance, Soffe says. The average cost of a very basic funeral package is around $5,000. Cremations, less expensive than burial, are soaring.
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