What does "patient-centered" really mean?

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As the Trump administration develops its replacement for the Affordable Care Act (aka Obamacare, soon to be TrumpCare), you will hear a lot about the term “patient-centered.” Sounds terrific, right? About time the health care system gets redesigned around the needs of patients. After all, don’t patients know best what they really need? Maybe.

Think about the last time you saw a doctor, or tried to see a doctor. If you are lucky, you were able to request an appointment online in a time period of your preference. But most patients had to call for an appointment, a call that meant entering various menu options and waiting on the phone while music NOT of your choosing ran endlessly. When you finally got to a real person, it wouldn’t be unusual if you felt that you were abusing that person’s time. You were asked for your birthdate, your member number, and maybe your birthdate again. And finally you got an appointment, most likely weeks away. Once you got to the doctor’s office, you probably had to wait, both in the waiting room and in the exam room. It wasn’t very warm in there, especially with you in your paper gown, backside exposed. If you saw a doctor from a multispecialty practice, the doctor probably entered the room with a tablet or sat at a portable station on a computer while she or he entered data into the computer screen. Did the doctor really look at you? I mean, other than to use the stethoscope or ask you to say “aah”? If you got 15 minutes with the doctor, you would have been privileged. If you questioned anything the doctor said, you might have been met with impatience or even slight contempt. And how many times have you walked out of a doctor’s office thinking to yourself, “Wow, that was a great visit.” I would venture to say you could count those times on one hand.

So “patient centered”? What does that term really mean to those who are designing the replace part of “repeal and replace?” Who is defining this from your point of view? I know there are many researchers and policy folks who strongly believe we can fundamentally change our health care from doctor-centered to patient-centered. There is even a research entity called the Patient Centered Outcomes Research Institute (PCORI) to figure out how to make care more focused on you. But forgive me if I feel a little cynical, not only by the daunting challenge of making those kinds of reform happen, but about the intentions of the Republicans who are, as you read this, putting together the legislation that will replace the ACA.

What I fear “patient-centered” means to folks like the new head of HHS, Dr. Tom Price and the six other sponsors of replacement plans that are being discussed by Republicans, is a massive shift of costs and responsibility to all of us. Here are some ways that I believe “patient-centered” will be implemented under these replacement plans (and some of the language that will be used to explain these shifts):

1. The Republican replacement plan (which I am calling TrumpCare, since when he breaks the ACA he will own it), intends to give you more “choice”. But don’t be deceived. It’s not actually more choice of doctors. It may mean more choice of insurance plans. If you think choosing a health insurance plan is complicated now, just wait until you are on your own to figure out what is covered and what is not. There will be giant Swiss cheese holes in coverage, tiny tiny print that tells you that the rehabilitation therapy you thought you would have after your broken leg is really just one visit from a therapist. The replacement plan intends to eliminate “essential benefits,” which the ACA required that all insurers offer. Now you will have the privilege of selecting a plan that may not cover more than 5 days in the hospital, even though the plan says it covers hospitalization. Or may not have any limits on what you will be required to pay over your lifetime, leaving you millions of dollars in debt if you get cancer. Or may find a loophole for what your pre-existing condition really means to the insurance company. I have spent my career studying benefits and insurance and I can tell you that it is not at all easy to figure out what is covered and what is not when you need care. Bottom line? Choice means giving much more power to insurance companies to decide what is offered in the so-called marketplace and much less oversight.

2. Lower deductibles? The replacement plans like Speaker Ryan’s “A Better Way” promises lower deductibles. In fact, Ryan and the other Republicans rant and rail about the high deductibles in the ACA. But the core of that “better way” is actually HIGH deductible plans. Isn’t that crazy? These high deductible plans have been growing in the employment sector. Now nearly a quarter of workers are enrolled in a High Deductible Health Plan or HDHP. If you have a job with benefits, you may already be enrolled in one. And if you are, you know that even if your employer “seeds” your Health Savings Account with money to help you pay that $5000 deductible, you are probably delaying care because of the initial cost to you. High deductible health plans are really a massive shift of cost and responsibility from plans to patients. They do save money. But not for you. They save money for the employer or the government. If you love high deductibles, than by all means support Ryan’s plan, because that is exactly what you are going to get. HDHPs are supposed to give you the “power” to decide what doctor to visit, what surgery to have, and where to have it. The irony of it all is that there is precious little information available to patients about any of this, so at this point it’s an empty offer.

3. The Republican replacement plan relies on old ideas they have been touting for years. I have been writing about this for over ten years, and the proposals always remain the same. This particular blog from four years ago explains much of what is in Ryan’s current plan — high deductible plans, health savings accounts, allowing insurers to sell across state lines, malpractice reform, privatization of Medicare, and high risk insurance pools. None of these ideas will solve the many problems of covering all Americans. Most of these ideas will throw many of you under the bus.

As we embark on the GOP effort to repeal and replace the ACA, do not be fooled by the fancy language or the promises. High powered language like “choice,” “patient-centered,” “a better way” really mask proposals that intend to make you pay more. You will now have to figure out on your own (without any consistency across plans or help from an Exchange) whether or not Aetna or Blue Cross offers better insurance. You will have to try to decipher “insurance-ese” without any help from that Exchange or other organizations. You alone will have to do the deep dive that exposes whether or not your doctor or preferred hospital is in the “network” that the plan offers. And if you have had high medical expenses, you may have to stand in line to get enrolled in a “high risk” pool in your State. Past experience with these pools has been that they have long wait lists and are insanely expensive.

What to do? Resist. Protest. Do everything you can to persuade your legislators to retain the best parts of the ACA: the essential benefits that finally cover services for your autistic or disabled child or the Medicare prescription drug discounts that were going to close the donut hole in three years or the ability to keep your young adult on your own plan until they are 26. And during the debate, don’t let them convince you that the replacement plan will be a better way, or will give you, the patient, more power. It will not.