I Was My Mother's Scrap of Paper

Linda Stotsky

I looked, as most caregivers do, at the inside of the building, the floors, the paint and the aesthetics. We are preoccupied, vulnerable and first impressions are everything. I judged the worthiness of the LTC facility by its locale, the staff and our welcome. I took for granted that “nurses” were RN’s, having an MD as Chief of Staff meant he was there every day, and daily living meant more than struggling to survive.

I didn’t know about physician track records, medical malpractice and negligence. All blue skies and daisies, until my Mom became a resident. That started our fragile dance between LTC, ED, hospital, provider, back to LTC. Thus began my advocacy. Not just for MY Mom. I was vigilant about everyone’s Mom-- policing halls, looking into rooms, and answering cries for help. I watched my Mother change from a vibrant, confident SUPERHERO to a terrified, confused and helpless patient. I took her to providers who placed her on medication, only to bring her back to a facility where medications were routinely discontinued because of cost. I was “on call” 24/7.

My Mom became my mission. My then 3-year-old knew where all the toys were kept in the ED, we were frequent fliers. “AMA” meant an ambulance was never called. I loaded her, her wheelchair, her O2 tank, and my son into the car, and as I was running out, I grabbed a tattered piece of legal paper with her medications scribbled on it. This was her medical record. I was her CIO.

My Mother passed away after three years of suffering, much of which was preventable. Not only was there a lack of communication, a culture of caring had been replaced by one of cost. Human lives took a back seat to ROI. Instead of treating aging elders with the respect and dignity they deserved after years of giving, nursing homes were nothing more than “death beds” waiting to empty. I was so engrossed in the day to day challenges, that I didn’t have time to stop and think about the larger picture of what was wrong.

Fast forward 15 years. I am sorry to say that things have not changed much. My daughter recently had Thyroid Cancer. She was eager to use the patient portal to coordinate her labs, multiple tests, from all providers. It was not that easy. Informational gaps were everywhere- care coordination was still back in the year 2000. We need patient access. But it’s more. We need actionable information.

It’s been two years since the enactment of the ACA and little has been done to promote shared decision making. The reduction from a 5 percent threshold for Measure 2 from the EP Stage 2 Patient Electronic Access (VDT) objective, to “at least 1 patient” during the EHR reporting period HALTS progress. WE CAN DO BETTER. Please help us win this. Stand up and demand electronic access to your patient record. We should not have to carry around a tattered scrap of paper with medical information on it.

Join members of The Walking Gallery of Healthcare as we tell HHS, CMS, Politicians and Advocates that PATIENTS MATTER.

My name is Linda Stotsky, and I share my story as a patient, a Health IT advocate, a Mom, and a daughter. I can be reached at Linda.Stotsky@gmail.com or on Twitter via @EMRAnswers