February 2, 2023 by Tara Lagu
I was a resident working in an underresourced health clinic when, one afternoon, my triage paper indicated that my next patient needed a Pap smear. I walked into the room and found a woman sitting in a wheelchair.
Although I smiled and tried help her feel welcome, I felt nothing but panic.
During medical school, I had not been trained to care for people with disabilities. Now a resident, I didn’t even know to ask whether the clinic had access to a height-adjustable exam table. What I did know was that, because of my lack of experience and prior training, there was no chance I could perform a Pap smear for this person today. I apologized for the inconvenience and arranged an appointment for the patient at a women’s hospital on a different day and with a different doctor.
When I became a researcher, this experience, and others like it, led me to explore the disparities in care that patients with disabilities face. Through those studies, I have come to strongly believe that these disparities aren’t just a problem for patients who need sign language interpreters or accessible tables – they’re simply some of the most egregious cases of what all patients face in the United States health care system.
In 2013, my research team and I called a random sample of doctors from four U.S. cities, each time posing as a doctor making an appointment for a patient who used a wheelchair. Of the subspecialists we called, 20 percent said they could not accommodate such a patient. Some lacked adequate training or staff or equipment; a few said that their building was simply inaccessible, even though access to health care settings is a requirement of the Americans with Disabilities Act, or ADA.
More recently, we conducted focus groups with physicians to better understand the barriers that exist to caring for people with disabilities. Physicians in our recent study spoke with surprising candor, revealing in some cases profound biases toward people with disabilities. Undark reported on that study in November, which described doctors who reported using excuses in order to avoid treating people with disabilities. Some told prospective patients their caseload was full, or that they didn’t accept their insurance. Others were more straightforward, and simply told patients, “I am not the doctor for you.”
The attitudes and behaviors expressed by doctors in our recent study are inexcusable, unethical, and possibly illegal under the ADA. They also highlight why many patients with disabilities struggle to find doctors who will care for them, and suggest an urgent need to address disparities in health care access and quality.
But these dramatic examples not only provide a window into the U.S. health care system’s failures towards people with disabilities — they also reveal just how broken the system is for all patients.
For years, U.S. physicians have complained that they are squeezed by productivity metrics that lead to 10- to 15-minute appointments and hours of electronic health record charting long after the workday is over. These factors are all thought to contribute to physician burnout.
As patients, many of us feel how frustrating the system can be: long waits for appointments and tiny snippets of time to talk about our health concerns with medical professionals. Many of us, whether we need accommodations or not, feel underprioritized and unseen by our overworked doctors.
It shouldn’t come as a surprise, then, that many physicians in our 2022 study reported that, because of competing demands, they were simply unable to take the extra time to provide the care or accommodations needed by people with disabilities. Of course, if doctors don’t have time to provide patients with services that are required by law, they don’t have the time to provide anyone the personalized attention that most of us desperately want and need.
When talking about health care system problems, policy experts and researchers often use shorthand descriptions such as “perverse incentives,” “low-value services,” and other jargon. These words essentially mean that the U.S. health care system provides generous reimbursement for procedures and high-cost services, such as a cardiac catheterization, joint replacement, or radiological studies, but doesn’t reward spending time actually talking to patients in order to counsel them, diagnose conditions, or co-plan treatment approaches.
In other words, the doctors in our study were merely responding to the logics of the system: Because there is no incentive — and in fact there is likely a penalty — to care for a complex, high-need patient population, they were simply not going to do it.
While I’ve studied this phenomenon in my professional life, I’ve experienced it my personal life too. My father died in 2021, but for the 10 years before his death, I spent many frustrating days and nights trying to get him the care that he needed. I sent long (often unreturned) emails to new doctors describing his prior visits to other physicians. I called subspecialists hoping they would coordinate care between themselves, or at least review his medications to rule out confounding symptoms. They were, I’m sure, overwhelmed by his chronic illnesses and lengthy medication list, but there was also no incentive to figure out how to simplify his regimen.
My father did not have a disability and he was never refused care, but the system failed him nonetheless. And while many of us may be able to tolerate sporadic or short medical appointments when we are young and healthy, it is only a matter of time — if we are lucky — before we require the care that the current system simply cannot provide.
There have been small efforts to effect changes. Ideas have included compensating physicians or health systems for providing value-based care (tying payment for care to patient health outcomes) or for coordinating care (paying for time spent aligning providers’ and patients’ goals). These efforts are laudable, but fall far short of the gargantuan need.
In practice, these programs end up competing with — or at the very least coexisting with — the incentives to see more patients, do more procedures, schedule more surgeries, and order more invasive tests. Health care organizations in the U.S. are struggling to simultaneously participate in programs to coordinate care and prevent hospitalizations at the same time that most care is delivered and reimbursed in a fee-for-service environment that rewards more procedures and hospitalizations.
Because of this tension, programs that aim to shift incentives and increase care coordination have done almost nothing to improve patient experience, reduce physician burnout, improve outcomes, or reduce cost. We need bigger and better solutions, participation from both large and small health care systems, and a willingness from payers like Medicare and insurers to consider new and innovative approaches to care delivery, billing, and documentation. Clearly, we also need the input of patients and buy-in from physicians.
The U.S. health care system is failing us all. The most vulnerable among us are truly suffering and unable to get the care they need, but even the most casual users who are accessing the system for an ankle sprain or wellness visit experience U.S. health care as exasperating or even dangerous. And the workers in the system, the physicians and nurses and therapists and technicians? They are suffering, too. So much so that many are simply leaving the workforce.
Patients and physicians need to work together with health care and political leaders to redesign care the system so that it prioritizes patients’ health, reduces the burden on physicians and providers, and improves the experience of accessing and receiving care.
The dehumanizing health care experiences described by patients with disabilities have made it clear: We all deserve better.
Tara Lagu, M.D., M.P.H., is a pharmacist, hospitalist, and health services researcher at Northwestern University Feinberg School of Medicine in Chicago.