I’ve been as guilty as anyone of leaving my patient out on a limb. As a practicing primary care physician, I’ve had patients with diabetes who observe Ramadan, but I had no idea how to support them during their fast. I’ve had transgender patients yet didn’t have the right language to talk about their health, and nothing in the electronic health record (EHR) seemed designed to support them. I’ve sent patients out with a referral knowing they would struggle to navigate the convoluted health care system, which even insiders like me cannot master. From the patient’s perspective, the universe of health care feels very frustrating.
In fact, so myopically has the U.S. health care system organized around its own needs that the patient seems to have been an afterthought. The birthplace of this dynamic is in the traditional treatment model, where medicine has historically been very paternalistic, placing the patient as a passive recipient of care provided by experts who know best.
While this started with the traditional treatment model, it was made much worse by the fee-for-service payment system, which incentivizes doing more things instead of getting better results. With these two factors working synergistically, it is no surprise that patients have been peripheralized and rendered a commodity.
This passive role of the patient has since proven ineffective, and putting patients at the center of their care yields far better results. Studies show that patient-centeredness improves the patient experience as well as clinical outcomes. As it turns out, giving patients autonomy in their care is key to patient engagement, and engaged patients are healthier, live longer, and experience a better quality of life. But the cultural shift of moving the U.S. health care dynasty from physician paternalism to patient autonomy has been ambitious, considering how deeply these have manifested in systemic behavior and policy.
Perhaps in an effort to reclaim agency over their own health care in a paternalistic system, we now see a rebound effect into what is known as patient consumerism. The internet offers access to unlimited medical “information,” and it isn’t uncommon for a patient to tell me what tests to order and what medications to prescribe. Misinformation is increasingly rampant, and targeted ads for drugs and services drive product demand in the doctor’s office. It can be frustrating and time-consuming for the physician — I sometimes bite my tongue when moonlighting in the urgent care setting to prevent myself from saying, “How about we let me be the doctor today?”
But this trend reflects a justified backlash against a system that has completely disempowered patients and destroyed trust in physicians’ intentions and abilities. Patient consumerism isn’t the disease — it’s a symptom of a hypo-functioning health care system that has left patients disillusioned and forced to take matters into their own hands, in their own best interests.
The concept of “patient-centeredness” has now been embedded into health care policy frameworks and strategic plans worldwide. Much of the emphasis on restoring patient-centeredness has been focused on the patient experience, and heroic work has been done to unravel the underlying threats.
Numerous programs, policies, and processes have been implemented to improve (and measure) patient experience. However, too much responsibility has been placed on the shoulders of clinicians — to be more compassionate, more considerate, more patient — to be better listeners, better communicators, less in a rush.
Remarkable progress has been made in our collective clinical mental construct, reflected in changes to medical education, which has transitioned to a model of shared decision-making, respect for patient privacy, and honoring of patient preferences. None of these efforts is “wrong,” but they still don’t get at the heart of patient-centeredness.
Today, patient-centeredness falls on a spectrum, with involvement of the patient (and families) in end-of-life planning at the low end and empowering patients to take responsibility for their health and treatment goals at the high end. In the middle of this spectrum, we find other worthy approaches to patient-centeredness, such as support for social determinants of health and culturally appropriate care.
But a truly patient-centered health care system would be built on a sturdy foundation of high-quality primary care. Patients want to know how to get the right care at the right time from the right person, how to identify and manage symptoms, when to ask for help, how to take medications and how to make informed decisions when faced with complex health decisions.
There is no one better positioned in the health care system than a patient’s primary care physician to navigate the convolution, explain and educate, advocate for timely care from the right sources and partner together towards health goals. The health care system still has work to do to support what patients need to exercise more sovereignty over their health, and primary care is the cornerstone.
Unlike any other medical specialty, primary care physicians approach a patient’s care holistically, serving as a quarterback to help increase both health care and health system literacy. Through a longitudinal, trusting relationship between a patient and their PCP, the PCP is the clinician best equipped to walk a patient through end-of-life planning, scary treatment decisions, and bad news. The PCP is also the antidote to patient consumerism. When my patient and I know each other, we can discuss care as partners. There is trust, and fear does not drive decision-making. The U.S. health care system won’t be truly patient-centered until every patient has a collaborator and advocate in the form of a PCP.
If we want a more effective health care system, it needs to be re-engineered to revolve around the true center of gravity – the patient. We must involve patients early and often in the design of health policy, health technology, and health care ecosystems. We must reinvent health care payment models to tie incentives to what is of value to patients. And we must give every American access to a high-quality PCP.
Until we do this, we’ll continue to pay too much money for too little value, and we’ll all suffer in a system perfectly designed to keep getting the results it’s getting.
Sara Pastoor is a family physician.
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