Tootsie’s Story: Medical Error Takes a Life
Jennifer Bellot, PhD, RN, MHSA, is an assistant professor at Thomas Jefferson University and a Robert Wood Johnson Foundation Nurse Faculty Scholar. This is Part One of a two-part blog about the death of her beloved grandmother.
Just over a year ago, our family lost our beloved matriarch and my grandmother, “Tootsie,” to complications from a medical error. It’s hard to believe that it’s been over a year now and each day, we feel her loss—or presence—in different ways. I write about this remarkable woman in this month’s issue of Professional Case Management.
Tootsie was an amazing example of strength, generosity, and perhaps most characteristically, of someone who spent her life caring for others. She bore eight children in nine years, raised them almost single-handedly after her husband died prematurely, and managed a 160-acre farm—all without a high school degree. Tootsie and I had an especially close relationship, blossoming one summer when I lived with her as a preschooler while my mother pursued her graduate degree.
As I grew older, I would become involved in Tootsie’s medical management. She would regularly send me copies of her lab reports and medical records. Medical talk became our currency of love. We chatted about her latest cardiology consultation like others might chat about celebrity gossip. Following and safeguarding her health was how we shared our love best.
No doubt, age encroached upon Tootsie with a typical chronic-disease narrative. She lived independently and managed her underlying congestive heart failure and one kidney well through diet and activity. Bilateral cataracts sidelined her ability to drive and her portable oxygen tank made it difficult to board the bus, but there was always a will and always a way if it meant meeting friends for lunch…every single day.
One day, a routine visit from my aunt found Tootsie short of breath with a racing heart. A visit to the local emergency room found that, due to a medical error, Tootsie had been overdosing on Synthroid for the previous two weeks. Her fragile heart had run amuck. No one knows quite how this happened. Somewhere between her doctor’s medication order and what was placed in the prescription bottle, Tootsie’s Synthroid dose was drastically incorrect. Six cardioversions, a stay in the intensive care unit, and multiple consultations and tests later, Tootsie was exhausted. Her heart had been overtaxed for two weeks, sending her into irreversible congestive heart failure and resultant fluid imbalance, kidney failure, pneumonia and anemia.
In the final five months of her life, Tootsie went home for a total of 2.5 days. In the meantime, she had at least six hospital admissions at two facilities that involved three intensive care stays, six visits to the emergency department, a cardiac catheterization, five units of blood, an upper endoscopy and a startling number of chest x-rays, EKGs and blood tests. She quickly became deconditioned and spent every day that she was not in the hospital as a resident of the adjoining nursing home, determined through therapy and exercise to regain her independence.
As she was struggling in her final days, I spoke with Tootsie about what we could do to make her experience beneficial for others. She had no interest in suing the provider or pharmacy behind her initial Synthroid overdose. But, we agreed that a good option would be for me to tell her story, so others might avoid similar missteps.
Partially to deal with my own grief, I combed Tootsie’s medical records, for what I did not know. I was looking for something, anything, to make sense of those final five months. What I learned was that no amount of industry knowledge on my part, no amount of elder advocacy and no keen interest in Medicare could have saved Tootsie from a textbook case of error, difficult transitions in care, unnecessary intervention, missed opportunities, and conflicting opinions and prognoses. No matter how good Tootsie’s medical care was, non-clinical factors such as hand-off communication, caregiver coordination and outpatient care management and support were overlooked. The critical piece that was missing or diminished in each of these instances was the role of the nurse. Her case was, simply and sadly, quite typical.