Helping patients lead normal lives almost as vital as fighting disease
Evangeline Seay always dealt with migraines, but these recent ones felt different, she told me. She blamed her symptoms on recent stress and lack of sleep, until one day she got a phone call that would change her life forever.
“Your CT scan revealed that you have a tumor in your brain,” the calm voice said on the other end of the phone. The next few days came upon her like a summer storm: swift and formidable. She went immediately to the hospital on Friday. She had brain surgery on Monday.
Whether by the grace of God, as Evangeline says, or by an indifferent but successfully implemented health care strategy (or by a combination of both), her surgery went well and she recovered marvelously. Seay stayed in the hospital for about a week and eventually enrolled in rehab, where she relearned how to walk and to once again use her right arm, hand and leg.
It was unknown to her at the time, but these were just the start of a series of challenges that she would face.
As a single woman living by herself, Seay had to bear the numerous burdens that came with dealing with her many medical issues. Even routine life demands were made challenging by her medical condition. For instance, we sometimes take for granted the ability to drive, but given Seay’s risk for seizures, she was restricted from getting behind the wheel, despite her strong desire to return to work and her need to receive radiation treatments and attend follow-up appointments.
For Seay, this translated to many hot afternoons outside at bus stops and often generous favors from friends. Evangeline also had to manage care with multiple providers, which meant juggling different appointments at different times and in numerous locations. Many minutes were spent reading weathered magazines in cold waiting rooms.
The inconveniences of battling an illness weren’t the only problems she faced. Bills piled up. Financial worries swarmed her like a hive of bees, constantly buzzing in her mind and stinging when she least expected it. Saving money became almost impossible, and at times, medical debt seemed to swallow her whole. Seay eventually lost her home to foreclosure.
Nevertheless, she persisted and continued to work toward maintaining the life that she had fought so hard to keep. She said it plainly to me on the phone one day, “I take pride in my independence.”
She is not alone, and for many patients, a cancer diagnosis can be financially devastating. For Seay, it seemed everything she did and every ounce of available energy was used up to accomplish the seemingly simple tasks of maintaining health, paying bills, and keeping up with appointments, which meant she was denied many experiences that other people enjoy. Additionally, the mental toll of grieving for her previous life sometimes matched the physical symptoms that took place within her body.
Employers, family, friends and health care providers need to understand that helping patients achieve normalcy is nearly as important as curing the illness itself. Members of Congress can do their part, too. As they continue to debate how the U.S. health care system should operate over the coming weeks and months, they should keep in mind the tremendous financial burdens recovering patients often face as well as the significant good that could be achieved if health care providers are incentivized to act holistically and to establish policies that better the lives of the patients they treat — both while in the hospital and after they have been discharged.
Life for patients extends beyond the sterile corridors of the hospital, and careful consideration of these factors and potential solutions — including consolidating treatments, coordinating appointments with other providers, and providing resources for patients and families, both medical and financial — can make all the difference in the world.
It’s time to look beyond the conventional understanding of what it means to treat, be treated, and establish patient-centered policies.