On October 14, my youngest sister, Naomi Louissaint, should have celebrated her 46th birthday. But she died on May 30 at a local hospital.
In a world filled with so much darkness, Naomi was a shining light. She was empathetic, kind and full of life and joy. She had so much life ahead of her before that fateful day when she was diagnosed with stage IV cancer and given six months to a year to live. It was painful news to absorb. Our whole world has changed.
After visiting a local oncologist for nearly a year, we began to wonder if his care was prioritized over loyalty to pharmaceutical companies who benefit our healthcare system by prolonging life through chemotherapy. and/or experimental treatments. As a family, we frequently questioned her suppliers to find out if they were fighting for my sister. I have proclaimed on more than one occasion, “I need you to fight for my sister’s life!” But her provider cryptically replied that Naomi had already lived longer than expected.
We needed more empathy, compassion, hope and humanity from Naomi’s caregivers. Despite his condition and his prognosis, we expected better.
My sister suffered under the care of her healthcare providers while she waited for a recommended experimental drug. Towards the end of her life, she was hospitalized for a month. It was during this period that we all found ourselves entangled in the American healthcare system. It’s a system that didn’t provide her with the care she deserved. My sister, an overweight black woman, had to deal with a healthcare system full of implicit biases and systemic racism.
She was in so much pain, both physically and emotionally, despite the fact that Naomi had family with her every appointment, every hospital stay, every test, every scan. Her providers did not treat her with dignity when she fell in hospital, they played around and tangled her natural hair – which fell out – and they failed to control her pain.
We can only imagine what other black and brown patients without any support system have to endure. It shouldn’t be like that in America, or anywhere else. Our healthcare system needs major surgery, starting with the replacement of its heart and its conscience.
One of the most ironic experiences of all of this was that the hospice company Naomi worked for for 10 years terminated her employment and she lost her benefits in the midst of her care. This was a business where she worked extra shifts and missed family gatherings and vacations. She was the manager everyone came to for advice.
But the hospice society rejected her during her illness. His reasoning was that Naomi’s long-term disability claim constituted a voluntary resignation. This termination also terminated his health insurance coverage. As a family, we rushed to find Naomi new health insurance, but she quickly ran out of new benefits because she had cancer, an incredibly expensive disease to treat.
The Affordable Care Act was removed, and these changes affected my sister’s insurance options and care. Finally, after two months of fighting with her former employer, my sister received COBRA insurance coverage. However, this marked the beginning of the end of his life.
When she was last in hospital, Naomi was in so much pain, I believe the hospital extended her life to make money instead of exploring options with my family that would allow Naomi to die with dignity. Sadly, I know my sister isn’t the only black person to suffer at the hands of the healthcare system. Researchers have documented that black people’s pain is less well managed than that of their white counterparts.
Why didn’t my sister get the health care she needed and deserved? Why didn’t the healthcare team communicate with Naomi and my family about all of her treatment options, including those that might have resulted in a more dignified death?
Physicians, nurses and anyone who works at a patient’s bedside should be trained in cultural competency. Every patient, every life matters. I hope that by writing this, I can contribute to the discussion of black health care disparities in America and help create change. I also hope that Naomi’s story will spark a discussion about the role of Big Pharma in cancer treatment and the moral duty of doctors to remember their Hippocratic oath when discussing the choice of treatment for cancer. died with dignity with their patients and families.
So many people loved Naomi and he misses her everyday. May the name of Naomi L. Louissaint never be forgotten, in the name of a more compassionate and empathetic health care system. Hope this doesn’t become your family’s story.
Beatrice Louissaint is President and CEO of the Florida State Minority Supplier Development Council.