I Was My Mother’s “Scrap of Paper” and "My Daughters Advocate"
I’ve worked in healthcare over 25 years: In administration through hospital credentialing and procurement, as a practice administrator shuffling through paper charts, missing codes, and reimbursement in an era of managed care. It was during this time that my Mother became ill with CLL (Chronic Lymphocytic Leukemia), and COPD (Chronic Obstructive Pulmonary Disorder). My Mother was a staunch believer in Health CARE. She grew up believing that physicians were healers- and that nursing facilities took care of the elderly. Her decision to reside in such a facility began our decent into a world I could not have imagined.
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 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, considering 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 3-year-old knew where all the toys were kept in the ED, as 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 piece of notebook paper with her medications scribbled on it. This was her medical record. And I was the keeper of the key information.
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 Not only was there a lack of communication, a culture of caring had been replaced by one of cost.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 17 years. I am embarrassed 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 easy. Informational gaps were everywhere- care coordination was still back in the year 2000. She had surgery and needs subsequent annual body scans to search for additional cancers. Her last full body scan was performed over 5 months ago. She is still waiting for the results. We can "assume" that "no news is good news" but we need to know the hard data, the facts, to be sure.
Patients need actionable information. There has been little measurable progress over the last 17 years, regarding shared decision making. WE CAN DO BETTER. My daughter is working hard to be a partner in her care, yet she has a toddler, she’s tired, and sometimes it’s easier to give up rather than continue asking.
Become an advocate for patient access. Demand electronic access to your patient record. Not mere portal access. We should not have to carry around a tattered scrap of paper with medical information in the year 2017.
Join members of The Walking Gallery of Healthcare and The Society of Participatory Medicine as we tell lawmakers that PATIENT LIVES MATTER.
My name is Linda Stotsky, and I share my story as a patient advocate, a HealthIT warrior, a Mom, daughter, and grandmother. I can be reached at Linda.Stotsky@gmail.com or on Twitter via @EMRAnswers.