Health Reform, The Supreme Court And What I Learned From My Mother

As the Affordable Care Act worked its way through the courts in the past three years, I began to reflect on how it might have affected my own life and that of my mother, who died of cancer in 1994. After much deliberation, the Supreme Court just ruled that the Act is constitutional.

Like most people, I, too, was confused about the Act but I knew that it would benefit me along with millions of others. People like me and my mother need a health care system we can believe in -- something better than what was in place.

The medical system is mostly a profit-making structure that overlooks the most vulnerable sectors of our society -- especially older women.

I was a witness to this when my mother was dying from fourth-stage cancer that had metastasized to her bones. She initially became aware of the cancer when she woke up with a crushing pain in her sternum. Her doctor at a health maintenance organization (HMO) diagnosed her with arthritis and suggested she take extra strength Tylenol. He refused to give a referral to a specialist.

It's often said that women become invisible after the age of 45. We also become invisible to the medical system. Older women are more likely to have complicated medical issues and are more likely to be low-income, having spent fewer years in the workforce because of raising children and caretaking elderly parents.

The Patient Protection and Affordable Care Act has already been helping the elderly population. As of January 2011, Medicare has been providing no-cost screenings for cancer, diabetes and other chronic diseases. At the same time, the Affordable Care Act established a new Center for Medicare & Medicaid innovation that tests better ways of delivering care to patients.

These two provisions alone are evidence that the healthcare reform has begun to improve the medical system -- both in terms of preventive treatment and in research. Medical treatment is likely to become less fragmented (and profit-driven) and more transparent. As a result, people will get better treatment and are less likely to fall through the cracks.

If ObamaCare had been in place in 1994, the year my mother died, it may have made a difference. However, my mother also needed the one thing that cannot be legislated: trust. Her experiences as a nurse, as a working-class person and as a woman taught her not to trust the medical system. In many ways, this distrust was generational. My grandmother, at the end of her life, had several heart attacks and was hospitalized in a nearby inner-city teaching hospital. When my mother went to visit, she found interns prepping her mother for a gynecological exam. She stopped them; my grandmother, who was 77 years old, died a few days later.

Ten years before she died, my mother was hospitalized for what turned out to be anemia. My mother looked at her X-rays and saw a shadow in her abdominal area (the same place where she had a massive tumor a decade later). When she told the doctor about this, he ignored her. Later, she researched his professional background and found a large gap between the years that he practiced medicine.

My mother's place in society may have been ingrained in her in some ways, but she became a feminist and a fervent supporter of a woman's right to choose. At the end of her life, my mother made the choice to die with dignity. She decided not to have the biopsy. Her theory was that sticking a needle into a tumor could cause the cells to migrate rapidly. In refusing medical intervention and in choosing to die at home, my mother took control of her life in this last act of self-determination.

Trust is something that isn't won easily. It's hard to trust a system that profits from your misfortune. At the same time, trust can be instilled and even centuries of mistrust can be overcome. My mother's dying wish for me was that I get my medical screenings done on a regular basis. Now, I routinely advise friends to get second opinions and put their medical care on a credit card, if necessary. Our lives come first. The Affordable Care Act is something that benefits us all.

Janet Mason is the author of Tea Leaves, a memoir of mothers and daughters published by Bella Books in 2012. She lives in Philadelphia. A version of this article appeared in On The Issues Magazine.