Systemic Invisibility: How Patient Welfare Vanishes in Our Healthcare System

Eight months ago, I was diagnosed with dilated cardiomyopathy. For those of you unfamiliar, it is a condition in which the heart's ability to pump blood is decreased because its main pumping chamber, the left ventricle, is enlarged and weakened. When I asked the physician’s assistant if my life was at risk, she said, "Not currently." I was so upset by her response that she asked the cardiologist to come speak with me. He suggested that we take a step back to understand more fully why my heart was having such difficulties. The physician’s assistant had no understanding about how her words scared me.

Some months later, it was determined that I would need a pacemaker. During the procedure, I woke up. I felt an object in my throat and began to fear that something was wrong. Had a trach been placed? Were there complications? I tried to speak, unsuccessfully. I began banging my hand on the surgical table to try and get someone’s attention. No one came to talk with me. I banged my other hand on the table and again, no response. The anesthesiologist was asked to increase the fentanyl and restrain my hands. As I fell back to sleep, whatever was in my mouth was removed. I was afraid. I needed a kind word and a gentle touch to reassure me, but I was invisible.

The next week I had a hip replacement. I brought my medications to the hospital so that I could take them while I was being treated. I had done this in previous hospitalizations because of past medication issues in the hospital. My medications were placed in a drawer and never used. I was told that those were my "home" medications and that I would be given the "hospital" medications. Later, I was infuriated when I didn’t receive all of my prescriptions. Staff didn’t understand my distress.

Anemia and low blood pressure kept me in the hospital for an additional day. Because I was on a variety of heart medications that created a low blood pressure side-effect, I called my cardiologist’s office. The health care providers in the hospital were not reaching out to them. I felt a sense of desperation. I knew that if I hadn’t connected them with each other, these issues would have persisted and wouldn’t have been addressed appropriately.

After I was released, my low blood pressure continued to be a problem at home. It sometimes dropped as low as 62/42. There was a difference of opinion among the physicians about one medication I was taking that created blood pressure issues. The specialists focused on their areas of medical expertise and provided differing solutions rather than collaborate to find a resolution. I wanted to shout out that I was a whole person, not a series of parts, and that each part together made the whole me. Once again, I felt invisible.

I was taken by ambulance to the hospital a few weeks later because of some pacemaker issues. Additionally, I was dependent on my walker and unable to sit straight up in a chair for any length of time due to my hip precautions. My walker was not with me. The EMT conveyed my issues to the triage nurse who told him that I would need to sit in the waiting room. I felt like a number rather than a person. It was very upsetting. In my frustration, I told the EMT that I was going home. My restrictions felt inconsequential and that I didn't matter. An emergency room doctor intervened at the request of the EMT and made sure that I was being cared for properly.

I was told the next day that my surgeon would come to see me after his last procedure. Three hours passed and no surgeon. When I inquired about his whereabouts, I was told that he was in a two-hour meeting. He arrived six hours later. My life felt unimportant. I was in the midst of trying to manage issues with both my business and my care at home while lying in a hospital bed. I was at the beck and call of a system that didn’t care.  

These experiences opened my eyes. I had never experienced the system in this way, either as a health care professional or as a patient. We are not performing our jobs in a way that has the patient being seen, heard and cared for in the best ways possible. Now I have expanded my thinking about the ways in which we need to make change.

In my next blog, I will begin to discuss how I am going to tackle these issues.

>