With healthcare being the focus of so much attention these days, I cannot help but feel bitter and sad as I remember Jeanna, my best friend for 35 years, on the anniversary of her death a year ago.
Jeanna had a full-time job as a manager of a local bookstore, where she had excellent health insurance. When her mother was diagnosed with liver cancer 3 years earlier, she reduced her hours at the bookstore to be more available for her 87-year-old father, who lived with her. She never went back full-time after her mother’s death, which meant she no longer had health insurance.
Jeanna was from an upper middle-class family, had a college education and until that point, had always had insurance and taken care of herself and her medical needs.
In early May, 2008, Jeanna began showing signs of a bladder infection, and being familiar with the symptoms, she bought an over-the counter medication until seeing a doctor . She began feeling worse, and called me one day, frantic, because her skin had turned yellow. She was afraid that she had overdosed on the medicine, and feared her skin was turning yellow from the medication (which usually causes your urine to change color when treating a bladder infection). I urged her to see the doctor, but she was hesitant and hoped drinking more water and flushing out her system would help.
When her skin stayed yellow, she went to the emergency room and was admitted to the hospital, where she was told she had jaundice, and several tests were done to check her liver. We were all worried because her mother had died of liver cancer, and hoped for the best. An x-ray showed a mass in her stomach and she was sent for more tests.
Because she had no insurance, her doctors wanted to keep her in the hospital so she could get the care she needed. Jeanna was upset and embarrassed by how she had been treated upon her arrival in the emergency room. She told me that she was ashamed and humiliated by the change on everyone’s faces when she stated she had no insurance. She said the nurses wrote “UNINSURED” in red marker on the outside of her chart and left it hanging on the wall for everyone to walk by and see. Therefore, instead of staying in the hospital to get the treatment she needed, Jeanna was discharged and planned to get the tests she needed on an outpatient basis, away from the judgmental attitudes she had experienced in that hospital emergency room.
Jeanna spent the next 3 weeks attempting to have tests done and trying to see doctors to find out what was wrong with her. She was continually told that she could not get treatment, even if she was able to pay by cash (which she was willing to do).
Two weeks later, all her organs shut down. She barely made it to the emergency room again, where she was told she probably would not make it through the night. She had bile duct cancer. We all received a frantic phone call to come right away. I raced to the hospital, wondering how bad she was and silently cursing the U.S. healthcare system and insurance companies, including the doctors who had refused to see her over the past several weeks.
Once I arrived, Jeanna was awake, feeling good and not behaving anything like someone who had just a few hours left to live. I learned later that she was undergoing dialysis, which had caused a temporary improvement in how she felt and looked. She spent the next week in the hospital, with no hope for treatment or any improvement. The hospital administrators had originally told her family that she would be able to stay in the hospital until she died, but they came back later and insisted that she be discharged to hospice care. Their response to any questions always ended with “We cannot treat her because her condition is terminal and she has no insurance. We need the bed for someone who can recover.” We were concerned she would not make the ride back home, because the hospital was a 90 minute drive away from the hospice facility. I couldn’t understand why the hospital would discharge her to experience an uncomfortable, 90 minute ride home with just a few more days to live.
Jeanna was checked into the local care facility as a hospice patient. We spent the next few days trying to make her as comfortable as possible, while she was given minimal care. When the time came for the hospice nurse to be called, we sat with her trying to do whatever we could to help her. I think all we were doing was making ourselves feel better, or finding some way to occupy ourselves so we could feel useful, when we were really useless, especially to Jeanna.
Jeanna kept refusing pain medication, and did not want to be sedated on morphine. As her condition worsened and she was no longer conscious, she was obviously in pain and was incoherently babbling and thrashing around. I begged the nurse to give her more pain medication, and later learned that she was being given the most minimal medication as possible, because she was an uninsured patient.
Her family and I spent the night in her room, unable to leave. That night was the most horrible night of my life. I cannot think of anything I have ever experienced as difficult as watching my best friend die in such a painful and inhumane way. All because she didn’t have insurance. Would Jeanna have lived if she had felt more comfortable seeing a doctor, instead of being ashamed to ask for help, because of how uninsured people are treated by healthcare professionals?
Jeanna died at 5:30 a.m. on August 3, 2008. Maybe there was no hope for her and by the time she was diagnosed, there was really no treatment available. However, how much of this could have been prevented if Jeanna had been able to see a doctor a few years ago and have all the tests she needed? If the huge mass in her stomach had been discovered a year earlier, could Jeanna have lived longer? Either way, wouldn’t her quality of life have been better?
If we live in one of the wealthiest countries in the world, why are any of our citizens treated so poorly?
