I write this across the dinner table from my wife Veronica. She’s exhausted after spending the day helping her brother Vincent, who is once again hospitalized for an oozing and tenacious toe infection. This infection may or may not have infected the bone. Lab tests seem to indicate no osteomyelitis. The imaging is inconclusive. Some of his doctors believe the lab results. Others don’t. He’s got an infection higher up his leg, too, which may or may not be related to what’s happening with his toe.
He’s had three short hospitalizations in the past month. None of the individual hospitalizations was particularly serious. He weighed maybe 340 when he moved in with us. He’s now around 200, but the decades of morbid obesity compromised the circulation to his legs. He’s thus susceptible to chronic infections and sores that require IV antibiotics and other interventions. Within the past few months he’s had a few frightening episodes of syncope. Last week he gave himself a nasty knock on the head after apparently fainting. His various infections seem to have something to do with that. He’s looked a lot more sprite after rehydration in his hospital experiences.
The current hospital stay isn’t going that well. Vincent’s various doctors aren’t talking with each other. A lab test that might have been valuable couldn’t get done. An MRI requested by his primary care doctor didn’t happen. The human experience has been reasonably crummy, too.
Vincent’s primary care doctor wanted him to go to the hospital—which he did. The mechanics of the admission were through the emergency department, where Veronica and Vincent sat for hours for no intelligible reason. The floor nurses weren’t especially prompt when Vincent needed them. Hospitalization is confusing for anyone. Vincent’s intellectual disabilities make things especially bewildering for him. It’s hard for him to communicate his basic needs. He’s ungainly, even when he’s not limping from an infection, wearing a weird hospital gown, or dragging an IV pole. Veronica does an awesome job taking care of him. But he has a sense of dignity that puts some all-too-understandable boundaries on this relationship. He’s a 46-year-old man. He doesn’t want his sister supervising him as he attends to his basic needs. He’s tired, and people keep waking him up for no good reason because there’s a shift change or to polish the floor.
Odds are, he’ll be discharged today or tomorrow. He’ll look better than he did coming in. Maybe he’ll be on different antibiotics. I doubt anything conclusive will be learned. Every individual who deals with Vincent is smart, kind, and capable. The overall process is pretty disorganized and unpleasant.
Vincent is one of those “dual-eligibles” who receives both Medicare and Medicaid. As I wrote in the Daily Beast, our family is obviously concerned about GOP proposals to bloc grant and to deeply cut Medicaid over the next decade. And if you know me, you might now expect a disquisition explaining how the Affordable Care Act addresses the problems I noted with Vincent’s hospital stay. Maybe I’ll be able to do that another day. Right now, though, I’m struck by the incredible gap between our political debates and what needs to happen differently at the bedside, in doctors’ offices, and elsewhere to provide better care.
Much of this year’s election hinges on basic ideological and economic questions: Should we provide every citizen with affordable health coverage that allows everyone decent care in the event of serious illness, disability, or injury? How can or should we “bend the cost curve” to make our health care system more disciplined and sustainable?
We can’t avoid these large fights. I wouldn’t want to avoid them if I could. Yet these larger fights are rather removed from the daily realities of medical care. These issues are also rather removed from many burdens, heartaches, and anxieties experienced by patients and their caregivers. If we bent the cost curve, and achieved solid universal coverage, we would still face serious on-the-ground challenges.
Our health care system must do a much better job caring for people, particularly patients who have complex conditions and co-morbidities who require the services of many different providers who do not work together well.
That’s a huge challenge. Delivery system reforms seeking to address it comprise much of the junk DNA in the Affordable Care Act. There’s nothing inherently ideological about Accountable Care Organizations and related efforts. Liberal and conservative health experts in every field realize that our traditional fee-for-service financing model is a big part of the problem. So is the culture of medical education and practice, which is getting better, but still fails to promote effective team-based care.
Patients who rely on Medicare and Medicaid pose these challenges in particularly stark form. We are incredibly grateful that Vincent’s medical and hospital bills are covered by these programs. We’re anxious about many things. Yet over the eight years that we’ve had primary responsibility to care for Vincent, the American taxpayer and taxpayers in the state of Illinois have really had our backs. We’re not worried about receiving crushing bills. That’s how it should be. That’s how it’s been.
That said, I can’t point to anything else these programs have done to oversee or coordinate Vincent’s care. Maybe that’s for the best, too. I’ll say a few things in another post about how public policy might be improved for dual-eligibles. For now, I’ll just say that whatever we do in health reform, our health care system must raise its game in more mundane ways that are hard to discuss in a polarized election-year debate.