As a Black woman with cancer, my sister deserved far better treatment than she received | Guest Opinion

On Oct. 14, my youngest sister, Naomi Louissaint, should have celebrated her 46th birthday. But she died May 30 at a local hospital.

In a world filled with so much darkness, Naomi was a beaming 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. This was painful news to absorb. Our entire world flipped upside down.

After she had been visiting a local oncologist for almost a year, we began to question whether her care was being prioritized over loyalties to the pharmaceutical companies that benefit from our healthcare system by prolonging life through chemotherapy and/or experimental treatments. As a family, we frequently questioned her providers as to whether they were fighting for my sister. I proclaimed on more than one occasion, “I need you to fight for my sister’s life!” But her provider cryptically responded that Naomi had already lived longer than predicted.

We needed more empathy, compassion, hope and humanity from Naomi’s caregivers. Despite her condition and prognosis, we expected better.

My sister suffered under the care of her medical providers as she waited for a recommended experimental drug. Toward the end of her life, she was hospitalized for a month. It was during that period that we all found ourselves entangled with the American healthcare system. It’s a system that did not provide her with the care she deserved. My sister, an overweight Black woman, had to deal with a healthcare system full of implicit bias and systemic racism.

She suffered so much pain, both physically and emotionally, despite the fact that Naomi had family with her at every appointment, every hospital stay, every test, every scan. Her providers failed to treat her with dignity when she fell in the hospital, they played in and tangled her natural hair — which fell out — and they did not control her pain.

We could only imagine what other Black and brown patients without any support system have to endure. It should not be this way in America, or anywhere else. Our healthcare system needs major surgery, starting with the replacement of its heart and conscience.

One of the most ironic experiences during all of this was that the hospice care company at which Naomi worked for 10 years terminated her employment, and she lost her benefits in the midst of her care. This was a company for which she took on extra shifts and missed family gatherings and vacations. She was the manager everyone came to for advice.

But the hospice-care company discarded her during her illness. Its reasoning was that Naomi’s application for long-term disability constituted a voluntary resignation. This termination also ended her health-insurance coverage. We, as a family, scrambled to find Naomi new health insurance, but she soon exhausted the new benefits because she had cancer, an incredibly expensive disease to treat.

The Affordable Care Act has been gutted, and those changes affected my sister’s insurance options and care. Finally, after two months of fighting with her prior employer, my sister was given COBRA insurance coverage. However, this marked the beginning of the end of her life.

During her last hospital stay, Naomi was in so much pain, I believe the hospital prolonged her life to make money instead of exploring with my family the options that would allow Naomi to die with dignity. Sadly, I know my sister is not the only Black person to suffer in pain at the hands of the healthcare system. Researchers have documented that Black people’s pain is less optimally managed when compared to that of their white counterparts.

Why did my sister not receive the healthcare 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 allowed for a more dignified death?

Doctors, nurses and everyone working at a patient’s bedside need to be trained in cultural competency. Every patient, every life is important. My hope is that, by writing this, I can contribute to the discussion on Black healthcare disparities in America and help to create change. I also hope Naomi’s story sparks a discussion about the role of Big Pharma in cancer treatment and about the moral duty of doctors to remember their Hippocratic Oath when discussing the choice of treatment vs. death with dignity with their patients and families.

So many loved Naomi and miss her every day. May the name Naomi L. Louissaint never be forgotten, in the name of a more compassionate and empathetic healthcare system. Let’s hope this does not become your family’s story.

Beatrice Louissaint is president & CEO of the Florida State Minority Supplier Development Council.