Care Planning, Caregiving, COVID, Needs Navigation, Palliative Care
The Case for Person-Centered Care
Emmy Potter is a student at Grinnell College in Iowa. She shares her personal experiences as a young patient and details why everyone should have access to person-centered care.
I’m Emmy Potter, a third-year student at Grinnell College studying biology and political science, and I’m currently interning at NPAF. My experience here has even further inspired me to pursue a career in health policy and advocacy. After graduating from Grinnell, I hope to work for a few years in health policy in the nonprofit sector before attending grad school to obtain a Master’s in Public Health. Ultimately, I would like to continue working in health policy—working towards expanding access to resources and promoting better patient outcomes through compassionate care.
When I was a kid, my mom had a gut feeling that something was not right with my health. I was consistently getting infections, constantly bruised, and generally not as healthy as my peers. As I got older, my joints started to really hurt, I would constantly get sprains and strains, and my legs would give out. When she would bring up these issues with my doctors, they would run a few labs that would come back normal and chalk it up to the fact that I was a kid and that it must just be growing pains. Assuming, I would grow out of it.
But I didn’t grow out of it. Rather, my symptoms kept progressing. I had frequent migraines, horrible fatigue, nausea, and relentless joint pain. After giving up on finding an answer in elementary school due to a lack of access to specialists, I eventually began seeing doctors again my sophomore year of high school to get answers as to why I was feeling so bad. From then on, I was passed from provider to provider, traveling to four states to receive care. Despite spending much of our finances and time going to different appointments and seeing different specialists, my quality of life didn’t improve. I had seen all kinds of specialists and had become an expert on the types of questions that they’d ask me.
My perspective shifted, however, when I began to see an electrocardiologist, a cardiologist who specializes in the electrical system of the heart. I had started a new medication and had a follow-up appointment scheduled with this particular doctor. I remember he asked me, “How are you feeling?” I replied that my blood pressure had been much more stable. He looked at me strangely and said, “I don’t care about that. How are you feeling?” I realized that I never had a provider care more about how I was feeling and the quality of my life rather than the numbers and values in my patient portal. That experience completely changed the way I viewed care. In that moment, I could finally comprehend and put into words the thing that I had been looking for this entire time: patient-centered care.
After that, I made it my goal to change the patient experience in health care to make it more focused on symptoms and quality of life, rather than lab values. At the time, the easiest way I thought to make that happen was to study medicine and become a provider. I was always interested in science, specifically molecular biology. Yet, as I spoke to more and more providers, it became apparent that ‘patient-centered care’ wasn’t something that they could or wanted to incorporate into their practice. Instead, the providers seemed more focused on occupational requirements like seeing enough patients, completing enough procedures, etc. This, ultimately, is what pushed me to focus on pursuing a career in health policy instead.
As I finished up high school and started undergrad, the pandemic caused me to reflect on my experiences in healthcare. With disparities in American healthcare amplified, I realized that my definition of patient-centered care was lacking. I had focused more on the gaps of what a patient experiences in a doctor’s office, specifically homing in on symptom management over lab markers, but what about the majority of the time when the patient isn’t in the office? What if the patient is having trouble continuing care due to social or financial reasons? Perhaps, healthcare shouldn’t just be patient-centered, but person-centered.
Living in a rural area myself, I had never considered the long distances that I traveled for care. Two hours or more one way just seemed like a day off of school that would be easy to makeup, but I had never considered that my mom had used all of her vacation days and sick days taking me to appointments. Similarly, as a single mom and teacher of a disabled child, we didn’t have the financial stability to comfortably afford care and transportation to receive care. While we were lucky to have the funds we did, continuing to care for me in the way she did became a huge financial burden on my mom, causing tensions in the house and our relationship. She sacrificed taking care of herself to be a caregiver for me. Most people, however, don’t even have the privilege to make that sacrifice. Transportation, time off of work, insurance coverage, being able to afford specialty care—these are all barriers to care for many people that go unaddressed.
With all of these barriers to care in mind, it’s clear that care delivery can’t improve unless care is accessible to everyone and focused on patients as people. In order to do this, it’s crucial that providers are able to identify barriers that may delay or prevent care altogether and find ways to address them, which isn’t a small task. From understanding and navigating insurance, to referring patients to nutritional assistance programs, to helping patients secure transportation, to billing assistance—there are many ways to address patient needs to provide access to care. Yet, most patients are unaware of these services, don’t know where to start in getting help, or feel a sense of guilt or shame pursuing assistance in the first place. That’s where the support from providers, particularly navigators, is key.
In retrospect, having these resources would have made my journey much smoother. Perhaps I would have reached a diagnosis earlier. Maybe if my family had guidance regarding insurance and billing, we would have been able to avoid financial stress and treatment delays due to insurance denials or high out-of-pocket costs. Maybe my mom and I could have had a less strained relationship where she faced less stress from being a caregiver.
If our healthcare system was more person-centered, maybe more people would not be in the same situations I faced. Overall, receiving care can be difficult, and with a push towards patient-centered care, it is important to realize that we cannot make any advances without addressing the disparities within our health care system and making care accessible to all patients. With this in mind, at NPAF we have the opportunity to work to meet these needs and lay the foundation for person-centered care.