When the Advocate Becomes a Patient...
By Ailene Gerhardt, MA, BCPA, Founder, Beacon Patient Solutions LLC
I spend my professional life helping clients navigate the complexities of our healthcare system. Not only do I work with clients one on one, but I also offer educational talks on a variety of topics such as being your own best advocate, compiling a “go plan” in case of emergency, how to organize your important documents, etc.
On the morning of November 6, 2021, I had the opportunity to use many key points and suggestions I offer in many of my talks. Days before, on Thursday, November 4, as logged in to a conference on patient advocacy being held virtually, I felt sharp pain on my lower right side. I was uncomfortable but didn’t have any other acute symptoms and decided to just take ibuprofen to reduce the pain. I attended the conference as planned on Nov 4 and 5, facilitating the networking sessions to which I had committed and attending conference sessions via Zoom.
Overnight Nov 5-6 was awful. I was awake most of the night, the pain had intensified, and it seemed like a visit to urgent care two blocks away was needed. Even though I was in extreme pain, I made sure to grab my “go plan” and place it in my backpack. I had no idea what my diagnosis would be and wanted to be prepared in case I was headed to the hospital from urgent care.
My go plan included my advance directives (proxy, living will/personal directive), current medication list and copy of my Covid19 vaccination card, and an “about me” page (blood type, allergies, use of reading glasses, list of emergency contacts, login credentials to my online medical portal). It also included my “go bag” contents which included a pad of paper, pens, a phone charger, a spare set of housekeys, bag of travel toiletries, extra socks, and underwear.
After being seen by medical professionals at urgent care, my symptoms were narrowed down to appendicitis or inflamed gall bladder. I was referred to follow up care at a local ER. I had the option to travel there however I wanted, and so I drove myself. When I walked into the ER waiting room, they were expecting me. After 10 minutes, I was escorted to ER Bay 8.
I answered all kinds of intake questions. At some point during the process my answers must have indicated I was knowledgeable about the healthcare system. The nurse asked “are you a medical professional?” I replied “I am an independent board certified patient advocate.” “Wow,” she said. “That’s so needed. Being a patient is hard work and it’s so important to have support and someone involved who understands the system.”
I thought to myself, I have uttered the phrase “being a patient is hard work” many times. Yet, my individual personal experience with the healthcare system as a patient was solely as an outpatient. I had never been dressed in a medical gown sitting in the ER. I had never had surgery and I had never been a patient overnight in a hospital.
Just after the intake questions is when it happened – the patient advocate became a patient. I was given a hospital gown to change into. A parade of medical staff came into my space to test for Covid-19, take blood work, do a bedside ultrasound, place an IV, and eventually escort me to and from a CT scan.
Then at 3:33 pm on Saturday, November 6 a diagnosis was made – appendicitis. Fortunately, my appendix had not burst, but it was inflamed, and it needed to be removed. Surgery was the next step. I am fortunate to have a strong support system.
I was on the phone with my brother, who was enroute from his home in NJ, when the physician came in with the diagnosis. I placed my brother on speaker phone and we both listened to the plan and were able to ask follow-up questions.
An anesthesiologist came in shortly thereafter and we discussed allergies and the medication plan. In the hallway on the way to the operating room, I had a brief conversation with the surgeon. Once I entered the operating room (a location I had never personally seen before) I remember looking up and noticing how bright the overhead lights were. I think I was asked to count backwards. My next memory was waking up in the recovery room with my brother seated next to my bed.
After a period of time, I was brought to a hospital room where I was to spend the night. Although I asked all kinds of questions about how the surgery went, I was still extremely groggy and none of my patient advocacy skills were going to be of any use. My brother asked questions, discussed with the staff when I would likely be discharged the next day and let me sleep and begin recovery. Fortunately, my overnight went well and I was able to be discharged the morning after my surgery.
Three months later, I am healing well. This experience has only reinforced my commitment to community education and the continued need for individual support while navigating a healthcare crisis.
The system is complex. It is hard to capture everything you are being told – even if you attempt to write it all down. You don’t know what you don’t know. Having an advocate (professional, friend, or family member) is critical to having the best outcome possible.
Afterall, “being a patient is hard work.”
When the complexities of the situation are too challenging to navigate on your own working with an independent board certified patient advocate can help cut through the “red tape” and reduce complications at an emotional time. Contact Ailene to learn more about the value of working with a private patient advocate.