• Another hospital stay–and what’s not being discussed in a polarized health policy debate

    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.


    • Medical and healthcare professionals must lead the charge. As professionals we must hold ourselves to a higher level of accountability, as teams (including the patient and family) we must find ways to improve community well-being. When IP care is needed, medical teams must remove room for error and utilize systematic thinking in problem solving. Every phone must get better.

    • Couldn’t agree more. While various debates can go on about health insurance reform, many in the system suffer because of lack of coordination, lack of efficiency and lack of efficacy within the medical system. Most of the time it isn’t because of bad or non caring people, but rather the way the system is set up, Fee for service, paying for procedures and not for thinking or coordination of care. We pay for Healthcare, not for Health. Some forward thinkers, Donald Berwick MD, Atul Gawande, LTG Patricia Horoho, are all looking at ways of turning this around to make the system BETTER. At times I fear that the system may be too sclerotic to change from within and the real impetus to change will be consumer driven. Either way, it’s time and the time is now.

    • Cheers to your wife for managing the care of her disabled brother. Please keep up the struggle because health care delivery won’t change until patients and their families ACTIVELY demand humane and better care. Professional are often too busy to remember that “care” is part of the service. Stopping them and asking them for a do over can help.

      I’ve begged, pleaded, screamed (channeling Shirley McLean from “Terms of Endearment.”), written reviews and letters to CNOs and Medical Directors, and filed complaints with government regulators. Patients deserve an advocate. The best teacher for professionals is to spend a few days in the hospital as a patient with little or no control, it’s a real attitude adjuster.

    • Thank you for these posts. I am currently encountering similar difficulties with a parent who has Alzheimer’s. There is no excuse for the delay in care, the delay in reporting results, the aggressive pushing of high-risk procedures with little benefit.

      I work in healthcare and have little hope for the system adjusting itself to the needs of actual people who require cost control, efficiency and efficacy.

    • Sincere wishes for a speedy recovery and healthy outcome.
      Your family’s experience with the hospital stay is probably shared by many. However, I think most Physicians exert tremendous effort to practice medicine responsibly and professionally, while under challenging circumstances, patient/schedule overload and administrative/financial burnout!
      Read the recent “Widespread Problem of Doctor Burnout” at http://well.blogs.nytimes.com/2012/08/23/the-widespread-problem-of-doctor-burnout/?ref=health referencing “Burnout and Satisfaction With Work-Life Balance Among US Physicians Relative to the General US Population” available at http://archinte.jamanetwork.com/article.aspx?articleid=1351351.
      Communication and coordination of care is key to quality healthcare. It is an individual endeavor by every physician and surely varies by the individual. Drs. don’t have to always be “talking to each other.” They read the chart of the patient, which is clipped to his/her bed. Every Dr who sees the patient writes a note that describes the medical prognosis, treatment and tests required. The Dr. who orders a test or a treatment, is the one responsible to follow up on such recommendations.
      The Affordable Care Act, ACOs, and healthcare reforms, etc… are all about increased coverage for the uninsured (more demand on the Medical Profession), reducing cost (less reimbursement and financial rewards), and improving quality through better coordination of care, integrated electronic health care systems, and standardized quality measurements (burdensome regulatory clinical/financial integration among providers and multi layers of bureaucratic agencies assessing and ensuring clinical based protocols/evidence and presumed quality outcomes)!
      Healthcare is an economical force that employs millions of people, provides great service to our citizens, and stimulates innovations and technology that we export to the world (reducing our trade deficit). When the economy is in recession (or booming), stimulus (or investments) for infrastructure, education, science surge; why not in healthcare too?! The Government approach to reforming the healthcare system from a pure financial burden and a drag on the deficit, while understandable in the current economical strains, is self-inflected and short-sighted by the liability it acquired by political pondering to its citizens without fiscal responsibility and accountability.
      The progress and the prosperity of the HealthCare System in the United States, is directly linked to the improvement of the economy.

      (ed. note: The claim bold in this comment requires evidence per the comments policy.)

      • What’s compelling the Gov to act (reform) is its inability to fund its healthcare liability. Promise, pander, and pay later is what got the Gov in this mess; do we really need evidence more than 16 trillions in deficit. The new Act had many promises for inclusion of all, but it’s real cost is uncertain in quantity and quality. Admittedly, this comment needs more explanation. I hope to share a hands on experience in a Paper/Article at the near future.

    • Great post. To me it seems that the debate is only about who will pay for middle class people’s health. We seem to not know why the hospitals are so bad. I think back when I was a kid and our family doctor would come to our home. My father would pay him in cash, he always had big roll of money to make change. It seemed like we got better service back then.