We found out that her real name was Cindy Chapman, and that she died alone and afraid.
Cindy was a paralegal, an activist and a fighter of lost causes who lived in Worcester, Massachusetts. She was part of an online community called RATEMDs, where she had many soul mates. Her posts on health care were funny and cynical and wise. Her screen name was Jane Q. Patient.
My wife, Pam, was especially fond of trading comments and barbs with her. Like others on the forum, Jane Q. was prone to drop off the screen for days or weeks at at time. But she always resurfaced with stories of her battles with the system, her fights for the poor as a paralegal, or her volunteer efforts with the Obama campaign. A few months ago, as the fight for health care reform was reaching a fever pitch, Jane started posting about her own medical complaints. She told of emergency room visits and fights over insurance, and pain, pain, pain. Her postings became erratic, with uncharacteristic typos, misspellings, and fragmented thoughts.
When Jane Q. dropped off the screen again, Pam set out to find her. Having traded some private emails, Pam knew Jane’s real name and had a general idea of where she lived.
After relentless Google searching, Pam hit upon a column by Diane Williamson in the Worcester Telegram. It was the story of Cindy Chapman’s final days. The 48 year old native New Yorker lived with her cat in a room off Worcester Common. She had been suffering terrible back pains over the summer and had been taken by ambulance to the University of Massachusetts Memorial Medical Center Emergency Room on four occasions.
Each time she was discharged with some pain killers, but no answers.
The last time she went there she refused to be discharged and the hospital called the police to eject her from the ER on the grounds that she was exhibiting drug seeking behavior. She was put in a cab and sent home. She called one of the few people she knew in the neighborhood. She said that she was in terrible pain and that she was scared and she didn’t know what to do.
Her neighbor called six primary care physicians before finding one who would accept Medicare and could see her without waiting a year. This doctor found that Cindy Chapman had end stage cancer of the lungs, liver and spine. Two weeks later she was dead.
As the Senate prepares to take up the health care bill, The New York Times quotes one analyst as saying that “All industries stand to gain from this legislation.” But the real question we need to be asking ourselves is whether the Cindy Chapmans of the world stand to gain anything from our new approach.
We’d better hope so. After all, there was a reason she called herself Jane Q. Patient.
Dan Walter is the author of Collateral Damage: A Patient, a New Procedure, and the Learning Curve.