Pancreatitis and Raising Awareness of Poor Healthcare in the African American Community
My 64-year-old mother, Mary Lee Shaw was a retired Special Education Teacher and Administrator for the NYC Department of Education (NYCDOE). After suffering severe abdominal pain, she was rushed to NY Presbyterian Hospital-Methodist in Brooklyn, New York. She had been hospitalized from February 23 – March 15, 2019. At the time, my sisters and I were unaware of pancreatitis, nor did we know it was in an acute stage with my mother. A diagnosis was provided, but no one from patient relations was available to explain the condition, treatment, or any other crucial information. We kept asking about the available treatment, other than pain management but received no further response. The next step was discharging to subacute rehab on March 15th. The staff was not prepared to handle a patient with acute pancreatitis and other comorbidities. My mother’s condition deteriorated throughout the weekend, and she passed on March 18, 2019. My sisters and I were devastated. Our mother was so loving. She was a grandmother, a foster parent for 24 years who fostered over 180 children in her home, and someone we referred to as a “Silent Missionary.” She left a legacy of service, generosity, family first, and sharing for her children and grandchildren.
Saddened by the unexpected loss of my mother, I deeply researched pancreatitis and learned about the National Pancreas Foundation (NPF). After my mom’s passing, I learned that the hospital she was admitted to is affiliated with New York-Presbyterian in upper Manhattan, with doctors who specialize in digestive diseases – including pancreatitis. I was left with two burning questions: Why were these doctors not consulted about my mother’s life-threatening (and ultimately fatal) condition? Why wasn’t she transferred where she might’ve received the care she needed? My mother experienced the disparities of healthcare that, unfortunately, so many African Americans commonly face.
My 43-year-old sister, Shakeilya Shaw was a Special Education teacher with the NYCDOE in Brooklyn and was hospitalized for the second time with Stage 3 Fibrosis and end-stage liver disease. She’d been admitted to two hospitals in Brooklyn, where her medical teams took a passive approach to her condition. My sister and I were met with poor communication from the medical teams, hearing dismissive comments such as: “I wouldn’t resuscitate her because we cannot do anything about her kidney or liver disease” “Today is the day that she’s going to die” “We don’t know what her chronic medical problem is. I usually tell families to transfer loved ones for a second opinion” My sister succumbed to an illness I wholeheartedly believe could have been addressed over time. She passed away in April 2021.
My mission now is to passionately advocate and raise awareness of digestive diseases such as pancreatitis in the Black/African American community, as I have witnessed firsthand how it can affect families. I plan to address the disparities in health care prevention, treatment options, and funding affecting the mortality rate in the African American community through volunteering with the NPF. Also, education is important to my family as you can see from our career choices. It is important as a patient or caregiver when given a diagnosis, to arm yourself with knowledge in order to make the right decisions for your situation. I want to help teach the Black/AA community how to do this with the help of the NPF because I believe in a future where every individual has access to sufficient healthcare regardless of their race – as it should be.