QUALITY: "We're All Old People in Training"

Thanks to improvements in public health, biomedical research, and sanitation we live longer than earlier generations. But we also die longer. And neither our medical system nor our attitudes have caught up with that reality. As one geriatrician once told me, "We still think we'll wake up dead one day."

Dr. Joanne Lynn, a geriatrician, researcher, author. and at times Really Indignant Person, has been one of the most influential voices in trying to get the U.S. health care system to adapt to the needs of patients with chronic diseases, aging, frailty, and the years of slow decline and increasing disability that often precedes death.

"We are all old people in training," she likes to say. "Where is the care system?"

We heard Dr. Lynn address a recent briefing sponsored by the Hastings Center as part of its bioethics agenda for 2008. (Dr. Lynn is now working at the Centers for Medicare and Medicaid Services, but asked that we stress that she was speaking for herself, not as a CMS employee. Although knowing Dr. Lynn somewhat, we strongly suspect that she didn't say anything in public that she's not saying even louder in private to people who really matter).

Dr. Lynn noted that our current health care model is simply outdated. It was designed a half-century ago by men in their fifties and sixties who wore suits and feared heart attacks. But the system needs a lot of rethinking to make it serve the needs of people who live for years, slowly declining, from diseases ranging from congestive heart failure to Alzheimer's. We can save a life (at least for some time) with high-tech heroics in an ICU or an ER—but then we send the patient home without taking the low-tech (or no-tech) steps to prevent a medication error. And we don't do the talking and planning that is necessary for the patient who comes back into the hospital over and over again, leaving each time a little frailer. Dr. Lynn isn't talking about withholding care from people because they are old and sick. She's talking about giving them the right kind of care. We spend lots of money doing expensive imaging studies on dying nursing home patients, who won't even live long enough to die of their cancer if they even have one. But we pay so little to people who care for the frailest and sickest; some home health aides qualify for food stamps.

She allowed herself a brief reverie. What if all the family caregivers from across the country, the ones providing hundreds of billions of dollars of free care to their loved ones, began to see themselves as a political force, got themselves organized and marched on Washington. Then she stopped herself. They can't leave the bedside of the people they are caring for, the people that depend on them to descend on Washington. Maybe, she suggested, they need a virtual march?

CMS, her own agency, has stepped up its pace of trying to address these care gaps. They recently announced a pilot program to use computerized medical records to help track and improve care coordination, particularly as a patient moves from one setting to another (transitions are notorious for outright errors or just letting things fall through the cracks). It's called CARE. Continuity. Assessment. Recording. Evaluation.

Advanced chronic disease and end of life is where we spend an awful lot of our health care dollars, particularly in Medicare. It's also where the suffering, pain, grief, sadness is. We can and must do better.