Access Denied

A mother mourning the loss of her daughter discovers that she has lost something else important to her.

TRANSCRIPT

SPEAKER 1: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

SPEAKER 2: Welcome to JCO's Cancer Stories, The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

ELIZABETH CONROW: Access Denied, by Elizabeth Conrow. I lost my daughter, Amanda, in 2015. She was diagnosed with a brain tumor at age three and was in treatment for 2 and 1/2 years. Less than two weeks after she died, friends and family were getting on with their lives, but I was still in shock. I couldn't believe that Amanda was really gone.

Early in the day, I looked at my kitchen table and tried to imagine her eating a bowl of rice, an unusual breakfast for a five-year-old. But that was Amanda. My eyes filled with tears as they rested on the empty chair. She was really gone.

In that moment, standing in the kitchen, I struggled to remember every detail of who she was. It felt like the memory of her was slipping away. My heart beat quickened, and my mind raced with compulsive nagging thoughts. How tall was she the last time we were in the outpatient clinic? How much did she weigh?

I realized I would never be able to put her on a scale again or mark her height on the cupboard door. I fear that this information would be lost forever, just like Amanda. I moved to my computer and started to log on to our hospital's online patient portal to see if I could find answers to my questions.

How many times had I logged into this system looking for Amanda's test results or to message one of her doctors? How many times did it serve to confirm appointment times or remind me of medicine doses? I clicked the Sign In button, and my heart stopped. I couldn't get in.

Instead of viewing her chart, I saw an alarming red stop sign and a message saying "access denied." I stared at the screen in disbelief. Just two weeks after losing my daughter, I faced yet another heartbreaking and unexpected loss. I no longer had access to Amanda's medical records. I no longer had a connection to her medical team and the hospital family I had grown to love and care for.

Everything Amanda had been through for the last 2 and 1/2 years was gone. It was as if she never existed. She had vanished. I was caught off guard, deeply saddened, and utterly unprepared to have this connection to the hospital and this connection to Amanda ripped away.

I was confused and embarrassed by my emotions. I certainly didn't need this access. But I was devastated that it had been taken away. I reached out to my daughter's oncologist to ask how and why the patient portal had been turned off. I let him know that it was really important to me to be able to view Amanda's records, at least for a time.

It had never occurred to him that a parent might want to see this information again. He explained that it was a system designed safety measure that automatically turned off access to an account once a patient had died. I was the first parent to reach out to him with this question.

Amanda's oncologist immediately contacted the online records office to reactivate her chart so I could search out answers to some of my questions. It brought me so much comfort to be able to go back in and revisit her medical journey. As I thanked her doctor, I shared with him how impo