Dying Wishes: The Challenge and the Tragedy of End-of-Life Care

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Gobs of Medicare dollars are spent at the very end of life. But often, less is more.

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Cruel is not a word one expects to hear a doctor use about the health care system.

Brad Stuart is the chief medical officer with Sutter Care at Home, an affiliate of a nonprofit hospital chain in California. At first, he is reluctant to be quoted speaking starkly. Drawn out, he explains: "I use the word 'cruel' because I've been there. For a lot of years, I did a lot of work in the [intensive-care units] and on the wards, and I've seen it.

"Our medical training tends to desensitize clinicians--some might say dehumanize us--so we might fail to notice how cruel our treatment might seem to, say, someone who's elderly and demented and can't understand why they're being subjected to it. If you care about people, it really is not right."

When patients see what life on a ventilator looks like, they usually don't want one.

Late-life care is arguably the most flawed precinct of a troubled medical system. It is also a sector that growing numbers of Americans will encounter, as more of us live longer. Longevity, of course, is good. But for how many of us will it mean additional years of sickness, frailty, decline? For how many will it mean more medical care than we need or want?

Experts are divided on how longevity and health intersect. One theory, and everyone's hope, is that our healthy years will stretch with our life spans. A more pessimistic view is that longevity will outpace health, so we'll have more ailing years. An interesting hybrid suggests we will live through more years of chronic disease, but we'll also experience fewer years of disability, as medical advances help us stay independent. No one really knows.

What we do know is that more people will live to join the ranks of the "old old." By 2050, the number of Americans who are 85 and older will more than triple. These folks consume a lot of health care, which is expensive, especially at the very end. More than a fourth of all Medicare spending occurs in the last year of life. Of that, a large share is spent in the final month, often keeping people alive just a bit longer in intensive care. That's not a nice place to be--and it brings us back to Stuart's challenge: At least as important as paying for longevity is humanizing it.

Studies find repeatedly, for instance, that patients' wishes for minimal medical intervention near the end are often overlooked by doctors or overridden by relatives. Very often, too, patients do not understand the choices that doctors throw at them. Do you want CPR? A ventilator? When confronted with jargon, many people say "yes." But when Angelo Volandes, an innovative physician at Massachusetts General Hospital, shows advanced-care patients videos of what life on a ventilator actually looks like, they usually don't want it. "There's a huge misalignment between what patients want and what they get," he says.

Quietly, but gathering force, reform is rising from the grassroots. A movement for what's called "shared decision-making" gives patients specially prepared brochures and presentations to make sure they understand their choices. It turns out that patients choose major interventions less often when they're given more information in plainer language, and the results tend to make them happier and, often, healthier. Overtreatment is bad for you.

Another reform is called "advanced-illness management"; Stuart is a proponent and a leader in the field. It provides patients who have multiple late-life illnesses with extensive care at home. In one study, the result was to reduce hospital admissions by more than 50 percent. Costs are lower; patients are spared the ICU's fluorescent-lit hell.

Perversely, however, federal incentives are rigged against such innovations. Medicare pays for procedures and hospital stays but generally not for programs that forestall procedures and hospital stays. No wonder old age and hospitalization have become, in some places, all but synonymous. "Unless there are federal regulations," Volandes says, "you're not going to get this out there."

Medicare, of course, has proven notoriously hard to change. But baby boomers are equally notorious for bending the world to their will. Here's a prediction: Their numbers and longevity will transform advanced care. They will demand, and get, freedom from the clammy grip of the ICU.

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Jonathan Rauch is a contributing editor of The Atlantic and National Journal and a senior fellow at the Brookings Institution.

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