Communication breakdowns, cultural differences and years of skepticism have an effect on how much Appalachians trust their healthcare providers.
Some patients feel dismissed and disrespected, according to the authors of a new book on the subject. Others feel as if their doctors don’t understand where they’re coming from. Still others view healthcare providers as only wanting to make money off of their suffering. Without some way to connect with healthcare providers, however, the health outcomes of patients will continue to suffer.
Wendy Welch, former director of the Graduate Medical Education Consortium of Southwest Virginia, and Beth O’Connor, executive director of the Virginia Rural Health Association and the 2022 President of the National Rural Health Association, hope to bring both sides together to understand why that trust gap remains and what to do to fix it. In their new book, “Medical Mistrust in Appalachia,” Welch and O’Connor have compiled a range of academic and clinical perspectives about Appalachia’s complex relationship with modern medicine and its institutions.
“The book is a compilation of stories from different perspectives from people who have a number of reasons why they might be mistrustful of the medical community — African American women, people from the LGBTQIA-plus community, people who have experienced poverty, people who have gone through substance use, and people who are obese,” O’Connor said. “It’s really for helping doctors and other medical providers understand why some people might hesitate when the doctor says, ‘I want you to do X, Y, Z,’ and understand that it’s not because these people are stupid or because these people are poorly educated, but because the system has not treated them well in the past, and they have very valid reasons to hesitate.”
About 25% of the American population does not trust healthcare professionals, according to the National Institutes of Health. Studies from the NIH have found that 86% of patients trusted their own primary doctor or nurse, but only about half believe that medical doctors prioritize their patients’ best interests or admit mistakes. A study from the University of Pennsylvania similarly found that 86% of adults considered their own primary doctor to be the most trustworthy source of health information, and that nurses are consistently ranked as the most honest and ethical professionals.
But trust in the honesty and ethics of medical doctors has dropped nearly 14 percentage points, with only about half of the population trusting their scientific integrity or transparency. And 54% of Americans believe the overall healthcare system has major problems, with nearly 60% reporting they believe the system discriminates against certain demographics.
In Appalachia, mistrust is worse. Some studies have found that up to 80% of Appalachian patients have had some level of distrust toward the local healthcare systems, and in some places more than 25% have expressed severe mistrust.
The skepticism toward the medical profession isn’t random or fueled by illiteracy, O’Connor and Welch said. It is driven in part by systemic, historical and cultural factors, including a feeling of being exploited by doctors and drug companies, cultural and educational communication based on a perception of medical bias against the residents of Appalachia, healthcare deserts and hospital closures, and a culture of self-reliance.
The book explores those complex relationships and the possible origins of Appalachian’s mistrust, while analyzing the region’s relationship with the medical infrastructure and the relationship between healthcare providers and marginalized communities. With different chapters written by healthcare practitioners, and edited by Welch and O’Connor, the book wrestles with the realities of medical mistrust and the justifiable reaction of Appalachians in the face of their experiences. From cultural experiences with doctors as a person of color, to the lack of mutual trust between providers and patients, to patient experiences within the opioid epidemic, the book looks at causes, as well as how to fix the disconnect.
In some cases, the mistrust stems from cultural differences, Welch said. It’s sometimes impossible for a medical professional who comes from outside of poverty-stricken communities to understand what living in poverty is like.
“One of the things we were seeing over and over again was that doctors are coming from places where they weren’t food insecure,” Welch said. “We start with the very divergent lifestyles of the doctors that we’re asking to work here, and then we add in the economic differentiation. Telling someone ‘You need to eat better’ is cruel if you can’t help someone find the means to eat better, either the resources or the funding.”
In other cases, the mistrust comes from not being heard.
Wendy Lewis, one of the chapter authors, is clinical director for Partnership of African American Churches’ Infinite Pathways program in Charleston, West Virginia. In her research, Lewis found time and again that women of color in Appalachia felt their concerns and their lived experiences were dismissed.
She spoke with three generations of women in the same family who all experienced a lack of care during their pregnancies — the birth of one woman’s child was delayed, resulting in the death of the baby; her daughter suffered through an episiotomy with limited anesthesia because of a supposition that Black women were supposed to bear pain better; and her granddaughter had to be rushed to the hospital for pre-eclampsia after her doctor ignored her symptoms. The experiences left the family with a feeling that doctors would not listen to them, regardless of the severity of their symptoms.
“This has kind of been what the trend was where folks were feeling that they were describing their issues and challenges, but they weren’t being heard or their pain was being minimized and that although they were receiving care, they felt their needs weren’t being met,” Lewis said.
In some ways, the mistrust is borne on the back of generations of lived and taught self-preservation and self-reliance.
Marybeth Babos, a pharmacist and licensed herbalist in Scott County, Tennessee, wrote a chapter for the book about the foundations of medical mistrust in the region. Babos said many Appalachians put their faith in “granny women” and midwives whom they view as having their best interests at heart. Hospitals and doctors, on the other hand, are viewed as only being out to make a profit. But how a doctor treats a patient is sometimes dictated by the current practices within the healthcare setting, she said.
“Given our current paradigm in healthcare… where the provider has 15 minutes or less to spend with the patient, there, in my opinion, is no way to overcome it,” she said. “By corralling people through the system, the provider can’t listen to the patient because there’s not enough time.”
Welch and O’Connor said they hope the book will help to bring those in Appalachian communities together with medical professionals to move forward together. The problem of medical mistrust, Welch said, is only solved when patients and doctors view each other as a team.
“Medical mistrust goes down when doctors and patients operate as partners,” she said. “Doctors and patients are in a difficult position. They should have a common goal, and when they do establish that common goal, the mistrust goes away.”
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