End of life care: More or less of it?

Many patients spend their last few days and weeks in hospitals or nursing homes -- even though, when asked, they say they'd prefer to die at home.

TEXT OF STORY

Kai Ryssdal: We're going to take some time now on a subject most of us don't want to think about, much less talk about: Death and the process of dying. People 85 and older are the fastest growing part of the population. They're also the sickest. End-of-life care is one reason why we're spending more on health care, as a country, than we ever have.

In the first of two stories about the changing economics of the way we die, Marketplace's Caitlan Carroll explains how we got here.


Caitlan Carroll: First a little background: I love the movie "Cocoon." I first saw it 21 years ago, when I was 10. It's about a group of senior citizens who find alien eggs in a swimming pool. And the pool turns into a kind of fountain of youth.

"Cocoon" audio: What's important is that when we get where we're going, we'll never be sick, we won't get any older and we won't ever die.

When I saw the movie, someone in my family was dying. I wanted a supernatural force to intervene. I was a child, but many people take that kind of magical thinking with them into adulthood.

Howard Gleckman: It was once said that Americans believed that death was optional.

That's Howard Gleckman. He's a fellow at the Urban Institute and the author of "Caring for Our Parents."

Gleckman: There may be such a thing as American exceptionalism, but death isn't optional.

Even if it feels that way sometimes. Respirators, pacemakers and dialysis machines can keep our organs functioning when they no longer work so well on their own. New drugs and treatments stave off the effects of chronic diseases like cancer and AIDS for years. As a country, we've invested billions in the promise of life-saving technology.

Gleckman: In the mindset of the modern American system, the right thing is more treatment and more stuff, more machines, more drugs.

At least a quarter of all Medicare money is spent on people in the last year of life, mostly in the last month. Much of this spending does help people live longer. But for many, it means being tethered to machines, taking experimental drugs and undergoing painful treatments.

Henry Aaron is a health care economist at the Brookings Institution.

Henry Aaron: At a certain point, layering on additional care -- as many people have put it -- extends dying but does not really extend life.

The process can also send families into financial ruin. And it's not the way most patients say they want to die. According to the Dartmouth Atlas Project, which tracks health care trends, more than 80 percent of patients say they don't want to be hospitalized or given intensive care during the last phase of their lives.

So why are so many getting it? It's simple and complicated. No one wants to give up. Not families. Not patients or doctors. And then there's the health care system itself.

Don Schumacher: When you look at the health care system as a whole, there are competing streams of revenue that could keep patients away from facing their dying. Everybody has, if you will, a dog in the end-of-life care fight.

That's Don Schumacher. He heads the National Hospice and Palliative Care Organization. It concentrates on helping people with chronic and terminal disease stay comfortable, rather than trying to cure what cannot be cured. What Schumacher means is that the health care system is built on incentives that are tied to more care.

Schumacher: You have physicians wanting to continue to treat, hospitals -- and most of this is motivated by the best of all intentions in that they want to give people what it is they want, which is the hope that they can survive their illness.

But he says when it becomes clear that there is little hope for recovery, doctors need to have frank talks with patients and their families about other options. A provision in the health care reform bill would have paid doctors to talk to patients about living wills and end-of-life care. It collapsed in a national fit of hysteria over death panels.

Health care rally: Woman: They would rather send you a $50 check for a blue pill, "end-of-life" pill than pay the necessary medical expenses.

Man: Obama care is euthanasia. It's rationing.

Rosemary Gibson led the Robert Wood Johnson Foundation's program to improve end-of-life care. She says in addition to not getting compensated for this kind of care, many doctors aren't trained to talk about death.

Rosemary Gibson: In fact, in the mid 1990s, if you picked up a medical textbook or a nursing textbook, you would never know that a patient ever died.

Howard Gleckman says he learned his father was dying of congestive heart failure, during a random conversation with his father's doctor in a hospital hallway. Gleckman took his father home and stopped looking for more specialists and different treatments. He decided...

Gleckman: That the best use of my time was just sitting with him and helping him remember. That was very gratifying. It was very helpful to me, it was very helpful to my mother, and I think, it was probably very helpful to him as well.

That decision bought them all some time to deal with the inevitable.

In Los Angeles, I'm Caitlan Carroll for Marketplace.

Ryssdal: Caitlan's story was produced as part of a California Endowment Health Journalism Fellowship, a program of The Annenberg School for Communication & Journalism at USC. Tomorrow, how end-of-life care is changing.

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