Ending the Era of Entitlement Part 1: Patients

This Labor Day, I am on a plane headed back to Washington, D.C., either a glutton for punishment or an eternal optimist about healthcare reform. It’s another week of 40 or 50 meetings on Capitol Hill to try to be heard above the “public option” noise which has sadly come to dominate this debate, as if it is the only problem (or solution) worth fighting for. Regardless of how we end up paying for healthcare for everyone, the painful facts remain: we can’t afford quality healthcare for all…or grow our economy…or stay globally competitive…without fundamentally changing our healthcare paradigm—and our social contract—for the 21^st century.

For the health of our country, we need to get off the entitlement train. From patients to providers to politicians, we have come to live in an era of entitlement. We have become a fast-track “me generation” with super-sized expectations for our lifestyles, services, salaries, profits, power, and appetites. We need the moral equivalent of Corporate Social Responsibility for each of us as individuals—call it Personal Social Responsibility, or “PSR” for short. Sure, I could just call this personal responsibility, something we’re all supposed to pay attention to, but capitalizing the phrase and putting “Social” at the center reminds us that we also need to be doing things for the social good, not just for the good of us as individuals.

Reforming healthcare in the midst of a global age wave and economic recession requires a rethinking of who we are as citizens. Defining a new social contract for healthcare means that we need to renegotiate the terms and conditions of what we are signing up for as a member a healthy society. What do we as patients, doctors, workers, corporate leaders, or political leaders need to do differently to achieve true healthcare reform? What would Personal Social Responsibility look like for each of us? Because so little in the debate has talked about PSR or reforming our social contract, I’m going to devote several blogs to this topic over the next couple of weeks. And to start things out, I want to focus on all of us…as patients and consumers of healthcare services.

Over the past twenty years as an advocate for several hundred patients in six different states, I have noticed some disturbing trends. There are multitudes of chronic disease patients like “Margaret” who took a laissez-faire attitude towards her diabetes. She once told me “the doctors can fix anything that goes wrong,” so she kept eating junk food almost every meal, forgot to take her insulin, and failed to track her glucose readings. Then there are the “Morris” type of patients. He was a retiree in Texas who was convinced he was the only patient in the universe, who deserved every test and attention that the doctor could give him because, as he oft pointed out, ‘“I’ve paid my dues and my co-pay.” And then there are those, like “Frances,” who epitomize an epidemic of patient passivity. In dealing with her stomach cancer, she dealt with over a dozen specialists across three states, but she never took the first note in an exam room, challenged anything a doctor decided, researched the first treatment being suggested, or even questioned when two different doctors put her on the same medication.

We as patients—as consumers of healthcare services—have to behave better and differently if we are to achieve healthcare reform that covers everyone, improves quality, and holds costs and the deficit at bay. We have become addicted to all-you-can-eat lifestyles with an all-you-can-use sense of entitlement towards healthcare services. We have too often lived up to the name “patient” by waiting around, passively bowing at the feet of the high priests of healthcare, absolved from all personal responsibility and action in our own care. We have treated our bodies like we do our cars—waiting until things break only to have the mechanics “just fix it” but with someone else paying the bulk of the bill no matter how reckless we’ve been as a driver. This collective lifestyle is unsafe, unhealthy, and unsustainable. So we need to become a different kind of patient.

First, we have to take Personal Social Responsibility for eating better food, exercising regularly, and stopping smoking. Our country simply cannot afford to pay for the largely preventable epidemics of chronic disease that suck dollars into our voracious healthcare system from other important areas like education, infrastructure, science and innovation, and homeland security. Healthy lifestyles have to become almost a patriotic duty—each of us rationing our unhealthy foods and behaviors for the War on Obesity, much as the greatest generation made personal sacrifices to fund military wars of the past. Parents on the frontline have to set baseline behaviors for nutrition and exercise for their children so that these become “second nature”—this is the ultimate act of prevention and patriotism and, quite frankly, love for our children that we can give. And we need to be open to explorations of insurance premiums and other incentives that foster healthier, more responsible behaviors by and for all of us.

Second, as consumers of healthcare, we have to take PSR for paying attention to the value and costs of healthcare services we are using. We are not entitled to an endless smorgasbord of healthcare services at any cost—regardless of who pays for it. Somehow even the wealthiest of us have come to balk at a “$10 copayment.” Somehow we’ve come to expect that treating a cold should cost us the same as a fall down a mountain. Somehow we’ve come to demand every test or therapy imaginable, even if it has little-to-no proof of improving our health. Healthcare is and always has been “rationed” because resources are never unlimited, but somehow we’ve turned the “R word” into a litmus test for being a communist. The reality is that one person’s wastefulness is another person’s potential lifesaving resource. We need transparency of healthcare costs in understandable terms and language so we can evaluate the emotional, economic, and evidence-based tradeoffs of different procedures and medications. And we need to pay as much (or more) attention to the economics of our healthcare services as we do to the house, car, or electronics that we buy.

Third, PSR means we have to become more proactive as patients. Gone are the entitled days of patients simply waiting until we are sick and then showing up at the doctor’s office for a dose of wisdom and some prescriptions. We need to be informed patients—researching the illnesses, injuries, and genetic risks we face so that we are a partner with our doctor or nurse in preventing a problem or getting better faster. We need to be empowered patients—taking notes and taking names in our clinical encounters to understand the details of our recovery. We need to be adherent patients—striving to follow what are most often “best practices” offered by our clinicians if we would only stick with the care plan they give. And we need to be demanding patients—being in charge of our care across providers, specialists, and problems we face because no one else can be a better champion for our holistic health than ourselves.

I’m under no illusion that these three things—healthier behaviors on a daily basis, paying attention to the economics of our care, and becoming more proactive patients—are easy.  While I am personally pretty good at the third one, numbers one and two are hard for me. I’ve struggled to stop eating fast food, junk food, and get more exercise to reduce my heart disease risk and better manage my own multiple conditions. And while I’ve tried to research the comparative costs and effectiveness of drugs and other therapies I am on, it’s not an easy task to do. With the hieroglyphic codes that show up on dozens of different bills from a single outpatient visit and the unavailability of what procedures should typically cost, it has proven difficult for me to be economically conscious about my care.

Do I want my employer, insurer, or the government to monitor my lifestyle? No, but at the same time, I realize that just knowing the right thing to do for my health has not been enough to get me to change things adequately. Perhaps hitting my wallet would help me help myself, while also saving the country money. Do I need the government to tell me what choices to make about my care? No, my clinical team and I can figure that out, but I could use policy changes that make cost transparency more standardized and intelligible. Do I think doctors and nurses are ready for empowered, informed, proactive patients? I can tell you from lots of direct experience that the answer is mostly “no.” In an age in which they are incentivized to see as many patients in as little time as possible, doctors don’t have time for proactive patients like me.

But I do need the government to establish a vision, a social contract, and a set of policies for our new healthcare system that shifts us from personal entitlement to personal responsibility. We can become more proactive and preventive, without spending our every minute thinking about healthcare. We can become healthier, without becoming a nanny state. We can become more personally socially responsible, without becoming a socialist country. And, as I have said before, we can shift the national discussion…to ask not what healthcare reform can do for you…but what you can do for healthcare reform? Or so says the eternal glutton for optimism.

NOTE:  ERIC DISHMAN'S 'HOME BLOG' PAGE HAS MOVED TO:  blogs.intel.com/healthcare.