“Janice” is dreading her 65th birthday next month, and not for the reasons you might imagine. She is actually proud to be turning 65, especially because doctors told her ten years ago that she only had a year to live. I met her in 1999 when she was first diagnosed with a rare disorder that’s not really considered cancer but gets treated similarly with chemotherapy for the rest of her life. Little did they know that Janice would deny the manifest destiny of their numbers game, well outliving their most optimistic expectations. I have been helping her navigate a complex chemotherapy regimen for many years. But now we face a much more difficult dilemma: navigating her insurance situation as she fast approaches and financially needs Medicare.
But let me back up a bit. After tormenting over the decision, Janice finally took early retirement three years ago from the retail company where she had worked for two decades. She could no longer muster the energy to manage her career, her disease, and the bureaucracy of coordinating her disease. Like most people, she took COBRA insurance for the first 18 months, hemorrhaging money from her savings account, until she was forced to take money from her 401k prematurely with penalties because the “hardship paperwork” was just too complicated and time-consuming for her to figure out. (Her COBRA ran out and she had to pay exorbitant dollars for a private plan because of her pre-existing condition…which was another battle…but I don’t have the energy to cover that one here today.)
We spent eight months during that COBRA period faxing, phoning, and fighting a Dilbertesque battle with her insurance company and the hospital where she was being treated. Janice, on the advice from her doctor, wanted to receive two chemotherapy treatments per week through infusion in her home (costing $213 per episode) instead of having to find rides for the fifty minute pilgrimage to the hospital (costing over $2000 per episode for the same bag of IV fluids). Even though the hospital had a home health and infusion division… even though Janice’s condition could safely and effectively be treated in her own home…even though it was 1/10th the cost to get that treatment at home compared to the hospital…and even though an open IV port for Janice puts her at even more risk of picking up a dangerous and expensive-to-treat infection (or now H1N1) every time she visits the hospital…the company refused to let her have treatment at home because “home care is only available to frail seniors over the age of 65.” Simply put, she wasn’t sick enough or old enough yet for the safer, cheaper course of treatment.
Those months were an exercise in finger-pointing futility and frustration, as each department blamed the ridiculousness of the situation (no one could argue with the fact that it was safer, cheaper, and better for Janice to receive treatment at home) on every other department, on Medicare, on state regulations, on patient privacy rules, on liability insurance, even on some obscure fire code (we never understood that one). Everyone defaulted to “no” from the start. Everyone claimed “I don’t have the power to fix this problem.” Everyone blamed “the system” that they were somehow absolving themselves from being a part of. Eventually, a lawyer friend of one of my co-workers got involved, we bugged the CEO of the hospital endlessly, and we convinced a doctor to convince a panel of administrators that Janice was not likely to live much longer anyway. We got approval for Janice to get chemotherapy infusion at home.
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Now it is November 2009 and healthcare reform is in the (hot) air. Janice is weeks away from the miracle of her 65th birthday, which she has been eager to celebrate for years because she can finally stop the steady flow of her 401k dollars to her private insurance plan. But a few months ago, her eagerness transformed into hopelessness. We began delving into the impenetrable maze of Medicare plans and terms, while Janice also started preparing for a big birthday bash for herself with friends and family in her Idaho home town. After much investigation and department-to-department shuffling all over again, Janice found out that Medicare was not willing to let her continue her chemotherapy at home. She would have to get treatment at a hospital or a nursing home—again, at far greater cost, risk, and hassle. One of the Medicare folks actually told her: “You’re too sick but also too young and capable to get home care.” Simply put, she was now too sick but still not old and frail enough for the safer, cheaper course of treatment.
In all the moments of bad news these 10 long years—her diagnosis, the death of her husband, the advancement of her disease, the bouts of painful side effects, the battle with her private insurance company, the fight over her preexisting condition—I have never seen Janice face such despair. I think she was almost serious when she asked me to take a hammer to her knees to cripple her enough to be eligible for home based care. And she said to me only days ago something I’ve heard from so many seriously, chronically ill patients before: “It’s not the disease I can’t handle; it’s the healthcare system I can’t survive.”
And then she sent me the following words to put verbatim into this blog: “I’m not asking for help or a hand out from anyone. I’ve got a good support network, and I’ll figure this problem out, too, like all the others. But wake up out there! Medicare may not be the Holy Grail you are hoping for. Do your homework early and often—and well before you turn 65! Because common sense in healthcare is quite uncommon.”
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So wouldn’t you think Janice’s predicament would be something that healthcare reform is trying to fix? Well, think again. While the ink isn’t final or dry on the healthcare reform bills, so far Congress is mostly going the wrong way on home-based care for things like infusion of chemotherapy, home dialysis, getting medical durable equipment to the home, or providing home care for seniors and seriously ill chronic patients. While I’ve been out trying to make the case for even more home-based care using technologies for remote patient monitoring and independent living, the traditional home care industries have been under attack. Medicare is reducing reimbursement rates to the point that many small and medium-sized home care organizations will be forced out of business. The last thing I want to do is to inadvertently wipe out traditional home care as we make way for new kinds of care technologies and services in the home. We ought to be building upon that foundation and tradition instead of chipping away at it!
When home care is often cheaper, more effective, safer, and much preferred by patients, why is it under threat? I don’t entirely know. In part, because of rare instances of fraud and abuse by a few bad apple home care companies, some in Congress, CMS, and the Congressional Budget Office are over-reacting…are throwing the baby out with the bathwater. In part, it is due to a false impression that quality cannot be proven and measured in home care encounters as well as it can be in clinical encounters. Other detractors use a chicken-and-egg argument that there is not enough “evidence” that home-based care works, but, when you try to get funding to create that evidence, they use the very lack of evidence as a means of not funding the studies because home care is such a small niche. And I suspect, in part, the pushback on home care is due to perversities in the system that may make it easier for plans to get reimbursed for hospital visits than home visits.
But as I, and many of my colleagues from dozens of organizations, work these issues on the Hill, there is another more troubling reason why home based care is under threat. The infinite loop of finger pointing by different government agencies means most everyone is reticent to take up the charge, even if they believe in the power and effectiveness of home care. Each Congressional committee we go to says, “Sorry, not our area of focus” and points us to another committee. While there a few exceptions, this fragmentation of responsibility and accountability occurs as you literally traverse office by office with each of them pointing you to the next door down the hallway with an implied or explicit “not my problem.” And now those hallways are filled with whispers and finger-pointing to another culprit: the Congressional Budget Office, or the “CBO,” for short. As one staffer put it to me, “Home care can’t pass the score-ability sniff test.” I’ve heard this refrain dozens of times—and more and more recently as the reform bills near fruition. Somehow score-ability has become more important than care-ability of patients.
I’m not an expert in federal budgets, the CBO, or CMS…but I am an expert in human behavior. And it doesn’t take a social science degree to see that people—even powerful policy makers—are living in fear of the power of the CBO—as they work on healthcare reform legislation. And it doesn’t take powerful observational skills to see that people—even powerful policy makers—are now scapegoating the CBO as the catch-all excuse for refusing to move forward on legislation that their constituents are advocating for. And it doesn’t take an advanced degree in economics to know there is something strange afoot when an accounting organization isn’t willing to comprehend the risk/reward ratio and ROI of treating someone for $200 per day at home instead of $2000 per day at a hospital. It is the infinite loop of finger-pointing by an un-interoperable government….agency by agency….department by department…committee by committee…looping from Congress to CMS to the CBO and back again…that often keeps us going nowhere.
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I may not understand all of the reasons, nuances, and history of these issues deeply enough. I probably don’t. But I do understand, very deeply, that day after day people like Janice are needlessly suffering—and that we are wasting billions of healthcare dollars—because of the unquestioned bureaucracies that we all tolerate, and thus, perpetuate. There is no doubt that the majority of people in Congress, in CMS, in the CBO, and in any other government acronym you can list here, are good people doing the best they can within the positions and policies they have inherited. But there is also no doubt that good people end up doing bad things to patients when administrators or policy makers hide behind finger-pointing, that’s-just-the-way-it-is, and not-my-departmentalism.
I hear lots of talk from Congressional members lately who lament that these healthcare reform bills will put bureaucrats in charge of care decisions instead of the patient making common sense decisions in consultation with his or her providers. Ask Janice and the doctor who prescribed her chemotherapy at home—and the millions of patients and doctors like them who are caught up in the infinite loops of these bureaucracies—who is really making the care decisions today. From my many perspectives—patient, patient advocate, policy advocate, researcher, innovator—we could all use a healthy dose of common sense, creative compassion, and a commitment to truly putting patients—not bureaucratic processes and procedures—first.
Meanwhile…Happy Birthday, Janice! And thanks for letting me share your story. I’ll call you tomorrow to work with you some more on your insurance plan. Hang on—they’re promising healthcare reform is on the way!
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NOTE: ERIC DISHMAN’S ‘HOME BLOG’ PAGE HAS MOVED TO: blogs.intel.com/healthcare.