The health-care reform debate has become so poison- and rhetoric-filled that it’s really easy to lose sight of the primary issue: How are individuals affected by our current health-care system? Before we can support change, or dismiss the need, it’s important to grasp what truths our neighbors and friends are living with daily, the realities they must accept. In these essays, four local adults describe their lives as shaped by their work and families, and their corresponding health-care coverage. From a doctor’s lament to a firsthand reckoning of end-of-life counseling to an eyes-wide-open account of an uninsured heart attack waiting to happen, our essayists offer a very personal view of why changes are needed in our current health-care system.
Carole Ann Borges, 67, is a staff reporter for The Enlightener newspaper, published poet, essayist, and author of many magazine articles. She has three children, eight grandchildren, and one great grandchild and lives in North Knoxville.
As someone who has spent my entire life unable to pay high premiums for private insurance, I feel very emotional about health-care reform.
Working as an adjunct professor and as a teacher at a non-profit, alternative school program for most of my professional life, I was not offered health insurance on the job. As a result of giving birth to seven children, my reproductive organs prolapsed soon after menopause. In those “olden days,” birth control wasn’t affordable and you needed a doctor to prescribe it. Even after my first twin baby boys died because they were premature and a couple of years later an infant daughter died of crib death, I still had trouble finding doctors who would perform the operation necessary to stop me from getting pregnant again.
In later years, as a direct result, because I could not afford a continuity of treatment, I suffered for several years with a prolapsed uterus and bladder. One doctor I did manage to pay for wouldn’t even give me a pelvic exam. He said, “If you refuse to have hormone therapy, then I don’t want to have you for a patient.” His main interest was obviously in pedaling therapies he could profit from. I was so happy when I retired and could receive Medicare. I felt as giddy as a teenager finally old enough to drink. Yeah! Government health insurance, finally! Immediately, the problems I had were corrected through surgery.
About that same time, four years ago, I moved to North Knoxville. I didn’t know anyone here. I like to say I “Googled myself here” because when I reached the Golden Age for retirement, I researched several cities online. Knoxville was affordable, had a viable artistic community, and was close to the Smoky Mountains. I love my new city, and this week my 90-year-old mother moved here, too, from California, so I could help take care of her. Even though she has poor vision due to macular degeneration, Mom is an independent type, a woman who had her first inspirational article published in a magazine when she was 85, and she still starts bopping around the room when she hears our local band, The Lonesome Coyotes. In California, she was eligible for state-funded supplemental health care. It paid for her two recent surgeries without costing her a dime. Here in Tennessee her income is too high to qualify for Tenncare. She worries now because the private supplemental insurance she recently purchased could end up costing her as much as $3,000 each year. Wouldn’t it have been great if under a federal plan her insurance could have come with her?
In spite of what might seem like a life burdened by sorrow and physical suffering, I have never been one to wallow in self-pity. Teaching was a joy, and my surviving children have been more precious than words can ever say. Last year, however, something unexpected happened, and I became familiar with the “end of life counseling” that is such a hot button in recent debates about health care reform.
My lovely 45-year-old daughter, Angie, was diagnosed with pancreatic cancer, and the doctors only gave her two months to live. She had insurance, so when they offered radiation and chemotherapy, she felt hopeful. The doctors admitted it wouldn’t cure her, but it might help relieve any future pain. Well, that poor kid went along with those expensive treatments, but each time she became weaker and her pain got worse. Even though we almost had to carry her in for her last two treatments, her doctor never suggested stopping them until I asked a nurse why Angie looked so much worse than the other, more ambulatory people in the waiting room. She said, “Most patients don’t continue when they are as weak as your daughter. I’ll talk to the doctor.”
The treatments were not terminated until the doctor referred her to people trained in end-of-life issues. His job was to save lives. As sad as the situation was, I felt deeply grateful for these end-of-life counselors. To me, they were angels of mercy. They helped us fill out the forms for Angie’s legal living will and talked to Angie about her desires. Most people don’t realize that the EMTs who arrive if a terminally ill person’s not breathing will use extreme measures to get them breathing again. This can involve cracked ribs and broken bones. Many patients without do-not-resuscitate orders are revived only to find that they are waking to a nightmare. Some end up like Terri Schiavo on life-support machines. Angie’s doctor never discussed things like this with us. He was too busy trying to save lives. He didn’t have time to spend discussing Angie’s dying wishes during his half-hour consultations. He didn’t have the training, either.
The end-of-life counseling we received helped my daughter die the way she wanted to, at home in a bed with Garfield sheets and stuffed monkeys sitting on her pillow. I held her hand when she took her last breath. I feel sad that so many terminally ill patients and their families might not be able to receive end-of-life counseling if we don’t enact health care reform that includes it, and I feel very angry when people call end-of-life counseling “death panels.” As someone who has benefited greatly from trained end-of-life counseling, I think this is, quite literally, a crying shame.
As a person who understands what it means to be uninsured, my heart goes out to those who simply can’t afford the ever-rising cost of high premiums. I feel like crying when I hear of patients who have their policies cancelled or those who are getting treatments just because insurance will continue to pay for them. How embarrassing is it to read that our infant mortality rate is higher than in 22 other developed countries? How to explain the fact that though we often hear we “have the best medical care in the world,” the truth is the United States ranks 42nd among the nations of the world in life expectancy?
I understand people’s fears about health-care reform, but it has been coming for many decades. Now is the time to act. This is not about elections or who makes the best president. Without health-care reform that includes some way to rein in the huge profits insurance companies are making, we can almost surely count on our grandchildren living shorter lives than we did. Now how can I explain that to my cute two-year great-granddaughter Cee Cee who thinks the world of me? How can I live with myself if someday I have to admit I was one of those people who opposed the kind of health-care reform that would let her live a long and healthy life? I cannot, will not, let that happen.