Why care must conform to patient values and cultural preferences

On his campaign trails, Harry Truman used to call on citizens to go out and vote for themselves, in their own selfish interests. It may sound shallow and divisive, but Harry Truman believed that the individual interests of the people should trump the special interests of the powerful few, and that’s how Democracy should work. Those were simpler times, but the logic still applies today, although it’s becoming increasingly difficult for people to figure out where their selfish interests lie, not because interests have changed, but because the art of spinning messages and the sheer amounts of cash thrown at it have grown beyond what Harry Truman could have imagined. Take for example the controversy around the Patient Protection and Affordable Care Act of 2010, a.k.a. Obamacare, which was spun into one little question: do we want the government to give more poor people health insurance, while forcing everybody else to pay for it? If yes, vote Democrat. If no, vote Republican.

But Obamacare, which is now the “law of the land,” has a few more pieces in it, pertaining to its affordability and patient protection goals, and those pieces where never up for public debate. Some of these pieces have to do with the definition of health insurance itself: Do people know what an Accountable Care Organization (ACO) is? Do they understand the concept of narrow networks built into the majority of new insurance products? How about high deductibles which seem to be the only game in town, rendering almost all the newly insured to be functionally uninsured? Other pieces have to do with care delivery itself: Who will provide medical care? Who will decide which medical care should be provided? How will care be provided and administered?

In the inner sanctum of health policy experts, all these questions, and many more, are answered by a prerecorded message: We are transforming health care from a wasteful, volume based, provider centric, sick care system to a health care system that is value based, patient centered, and fosters the health of populations. What’s not to like? If however, we insist on nitpicking, then perhaps we would like to better understand who does “we” refer to, and what does “value” mean, and maybe some information on how to get sick care, in the unlikely event that fostering the health of populations does not prevent us from falling off a ladder while cleaning the gutters.

Every definition of patient centered care concludes with the observation that such care must conform to patient values and cultural preferences. This is good, because it means we decide what care we want to get. Gone are the days where insurers could interfere with our wishes, and doctors would force us to do things just because they can. Now they have to ask us first, in Farsi or Vietnamese if we so desire, and be respectful about it too: Ms. Patient, would you prefer to take this very expensive brand name capsule once a day, or would you rather take this cheap uncoated pill that will dissolve in your esophagus almost immediately, three times every day? Our call. And if we choose to not take either the capsule or the pills, that’s our prerogative as well. But that’s not all. This goes much further than choice of pills or even diagnostic tests.

In a recent NEJM article, two Harvard researchers tell us that “[w]hile some patients may seek greater odds of survival, others may seek a faster return to work or lower out-of-pocket costs. These options are at the core of ‘patient-centered’ care.” [quotation marks in the original] So if, say, you have a tumor on your brain, you may choose to have surgeries and long convalescence times, or you may choose to stay productive until you die while staring at the computer on your desk, or you may choose to pay the rent and purchase food for your children for a few more months. It’s all up to you.

If your cultural preferences are biased towards staying alive and if you have above average values that can easily get you over the high deductible hump, you may want to choose option one. If you have publicly provided or heavily subsidized values, you may still choose to stay alive, although that would entail extreme selfishness on your part, and it may collide with your cultural preference to feed your kids for as long as you possibly can. If it’s not you with a tumor, but your child, the exercise of values and cultural preferences gets a bit more complicated, because children in most cases have negative values which should be balanced with projected future values, and if your cultural preferences lead you to have many children, the value calculation will need to be distributed across all of them. As you can see, with great freedom of choice, come great responsibilities, and this is at the core of patient centered care.

But patient centered care is not only about putting patients in charge of all their medical decisions. It’s also about transforming the system itself to preemptively account for patients’ values and cultural preferences. Care coordination during transitions of care is an excellent example of customer centered service, based on evolving cultural preferences. Informed by their personal cultural preferences, health care transformers know fully well that modern Americans move around the country every few years, from high-powered job to better-compensated job, or just for fun, so having a continuous relationship with one doctor is pretty much impossible. Furthermore, medicine is very complex nowadays, so you can’t expect primary care doctors to keep up with empowered consumers picking and choosing hospitals and specialists all day long, according to their values and cultural preferences. You can’t expect busy primary care doctors to do much of anything really, so the transformers are building all sorts of smart computer systems to automatically track and coordinate the billions and trillions of care transitions from sea to shining sea. This is beautiful indeed, but there’s one small problem.

Pew survey conducted in 2008 found that 37% of Americans spend their lives in the same town they were born, 57% always lived in the same State and only 15% lived in more than 3 States over their lifetime. According to the U.S. Census Bureau approximately 7 million Americans, or a little over 2%, moved across States in 2012. By comparison, during the heydays of Marcus Welby, 3.4% of Americans moved across State lines, and those numbers have been steadily declining since the glorious sixties. Similar to our health care transformers, those who move around today are more likely to be younger and/or college educated.

Another Pew survey finds that the vast majority of Americans prefer living where the pace of life is slow, not fast, and where neighbors know each other well. Only 23% would like to live in the city, with all others indicating a preference for small towns, suburbs and rural areas. Considering these mobility numbers and the clearly expressed values and cultural preferences of the nation, you may be tempted to conclude that maintaining a long term relationship with a doctor is both desirable to most Americans, and also perfectly feasible in a country where most folks die in close proximity to where they were born, but then again, you would be missing the point.

Confused? Not sure how to apply/solicit values and cultural preferences when considering/providing medical care? No worries. We will discuss these things next time. For now, be aware that proper utilization of a transformed system requires that patients are turned on (activated), and that physicians are reeducated.

Margalit Gur-Arie is founder, BizMed. She blogs at On Healthcare Technology.

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  • Rob Burnside

    Well said, Margalit. Takes me back almost forty years, if you don’t mind another sea story. It was one of the first codes I responded to, just after our ambulance had transitioned from BLS to ALS and was at that point a full-tilt boogie Mobile Intensive Care Unit. Naturally, we were anxious for any opportunity to apply our sophisticated life-saving skills and equipment. The call was in the city’s Heights section, one of the oldest neighborhoods–a mixed bag of many old world cultures all held together by the common thread of religious devotion. The only dispatch information we had was “possible cardiac arrest.”

    We arrived on-scene in less than three minutes, and made it to the front door huffing and puffing, toting our Lifepak-5, massive aide box, radios, and litter. We knocked but no one answered. It was summer and the door was open slightly, so we let ourselves in. In the middle room sat a very old man, slumped in an overstuffed pale red easy chair. His white-haired wife stood off to one side, hands clasped under her chin, her head slightly tilted and her gaze fixed on our patient. Without looking up, she held out a hand palm-up, stopping us in our tracks in the front room.

    My partner and I glanced at each other quizzically, as if to say, “What do we do now?” It was then we first saw the priest we hadn’t noticed when we entered, off to the other side of the easy chair, quietly finishing up Last Rites. Taken aback, we stood stock still, bowed our head and crossed ourselves. He finished, she looked up at us and smiled, and said, “Father’s done, please come in.” We wound up calling the coroner and the scene ended as peacefully as it had begun.

    This was well before home hospice, but it taught me something I’ve never forgotten. There’s a time for Advanced Life Support and a time for calling on A Higher Power. For many, one is just as important as the other, and the two can certainly work together–anytime!