Some families have a member who radiates such innate happiness and light that she illuminates the lives of everyone fortunate enough to live in her orbit. For my family, that person was my late sister Donna. Donna was born in 1968 with a congenital heart defect and spent the first two years of her life struggling with bouts of heart failure, pneumonia, and the inability to grow and thrive. Her only hope was open heart surgery to correct an atrial septal defect, a ventricular septal defect, and mitral valve insufficiency. We were fortunate to live near Stanford University, where prominent heart surgeon Norman Shumway performed her life-saving surgery.
For over two decades, the only real reminder of Donna’s heart issues was the impressive scar running down her chest. Several doctors had told her that she could consult a plastic surgeon to reduce the appearance of her scar, but she was never interested. To her, the scar was an outward sign of both her strength and her good fortune to be alive, and she was determined to always remember what she had overcome.
When Donna graduated from college she struggled to find a position in her chosen field of broadcasting and looked for other jobs to help pay the rent until she could establish herself. This was the early 1990’s, and employers had discovered a novel way to avoid paying benefits for their younger employees by limiting their work hours to 20 hours or less each week. Donna and most of her friends worked two or more jobs to get by and for most young, healthy people this was a situation that was unlikely to have any serious implications. In Donna’s case, the entire family worried about her lack of insurance but there was no recourse until she could find full-time employment. There was no Affordable Care Act to allow parents to insure their children until the age of 26 so they could find their path in life without the worry of an unanticipated illness and its crippling cost.
When Donna had just turned 25 she started to experience an irregular heartbeat. She saw her cardiologist, who was not particularly concerned but did tell her to make another appointment if her symptoms persisted. Within days, she called home in a panic that her heart was constantly slowing down and then speeding up, making her lightheaded. The situation warranted a brazen step – a trip to the emergency room without the benefit of insurance. The cardiologists at the hospital determined that a pacemaker was needed and since the situation was emergent, the hospital could not turn us away.
Once the pacemaker was implanted, the hospital discharged Donna as soon as possible and advised her to apply for Medi-Cal immediately to cover her hospital bills. We started the application process immediately, but it was bureaucratic and slow. There seemed to be no way to speed up the process and we had no idea that we were working with a limited amount of time. When Donna developed worrisome symptoms in the weeks after the pacemaker surgery, she called the hospital to ask for guidance. She was assured that the cardiologist was not worried about her symptoms and was also told that she would not be seen until the Medi-Cal coverage was in place. Since no one seemed concerned about her symptoms – or was advising her to return to the hospital- we were lulled in to a false sense of security that her condition was stable.
Donna died in her sleep a few nights later, throwing our family into an abyss of grief, guilt, and unanswered questions. When we could not get a satisfying response from her doctors, we requested her medical record to see if it could provide any answers. The hospital said that the cardiologist had the records and the cardiologist told us that the hospital was in possession of the records. When we finally accessed the records after weeks of trying, we could immediately identify things that disturbed us. There were areas in the record that appeared to have had information squeezed in after the fact, several missing EKG strips, and a disturbing notation saying that Donna had been told to go immediately to San Francisco General Hospital when she reported symptoms after the pacemaker placement. We knew this entry was a falsehood and it only served to leave us stunned and suspicious.
I have known people in my life who have had the great misfortune of living a short life, and so many of them seemed to fit a lifetime of experiences into their brief time with us. Donna traveled, skied, went white water rafting, knew great love, and assisted in the birth of her first nephew. She had a deep, throaty laugh that echoed through a room and made everyone else smile. Her zest for life was contagious and inspired those around her to reach beyond their comfort zone. She showed us what life could be like when you were appreciative and fearless. In her honor, I continue to be an advocate for those who struggle to find the medical care and the compassion that they need to heal.
I hear regularly from people who are facing the very same problems we faced way back in 1992 – the inability to access medical records, the phenomenon of altered or missing records, and providers who seem dismissive and uncaring. Health care is notorious for being a field that resists change, but it is distressing to be advising others on issues that we could- and should – have solved so long ago. My family will always wonder if immediate access to a doctor would have made a difference in the life of a beautiful, vibrant 25 year-old woman. It is our great hope that others are not left with that painful and haunting question.