The Other Side of Health Care

A few weeks ago, my aunt started to feel stomach pain but was told repeatedly by numerous doctors that it was just gastritis.

As the weeks went by, the pain got worse. At one point, the pain was unbearable, so she went to the emergency room. She finally got a CT scan and there it was: the source of all of her pain.

They found a tumor in her stomach, and she would need a biopsy. We remained positive but knew there was potential for the test result to come back malignant.

We received the results we were dreading, and they were worse than we anticipated. It was stage 4 non-Hodgkin lymphoma. The cancer was aggressive and was spreading like wildfire. Being a health care professional, I knew the survival rate was low, but I had to remain positive for my aunt and mother.

Denial can be tricky. Usually a coping mechanism, it can hinder our ability to accept the situation and take the necessary course of action. My aunt was in denial and, as a result, she did not want to get treatment.

We convinced my aunt that she needed to go to MD Anderson Cancer Center and receive chemotherapy if were we going to have a fighting chance. She finally agreed, and we all packed our belongings to make the 7-hour drive to Houston, Texas.

The circumstances did not get better. Her previous biopsy did not provide enough viable tissue for the diagnosis to be confirmed. As a result, she would need another biopsy. What complicated things was that her tumor was so aggressive, it was pushing against her intestines, so she was not able to eat or keep anything down. Yet, they could not start chemotherapy until they could get another biopsy and confirm her diagnosis.

She was then put on the list for a biopsy. T

o decrease her chances of aspiration, s

he was not able to eat or drink anything for the next several days. After a few days, the team made a vital decision by determining the diagnosis based on the pathologist’s report and starting my aunt's first cycle of chemotherapy without a second biopsy.

After the therapy was completed, she was released home. Three weeks went by, and she was on her way back to Houston for her second cycle.

Little did we know this next hospital stay would be even more challenging and life changing for all of us. My aunt's second cycle was started, but within a few hours, the doctor called. I knew this was not a good sign.

The chemotherapy was not working, and her organs were not handling it well. Her liver enzymes and bilirubin were off the charts. I had heard this kind of information before, but I never knew what this actually meant until I saw her lab results. In addition, her kidneys were failing. The hope we once had was slowly slipping away.

During pharmacy school, we had studied ascites, but I had never seen it first hand until that day. Her tumor was pushing against her liver, and she began to swell up. Her abdomen and legs were so swollen that she could no longer walk or get out of bed. She was now white as a ghost, weak, and confused. She could not even open her eyes or speak at this point.

I begged her to get dialysis, in hopes they could restart the chemotherapy if her labs were to come back down. She agreed. After dialysis, we were relieved to see she had more energy. Maybe this roller coaster of emotions would stop.

We were wrong.

The doctor came in and reported they could no longer do anything for my aunt. Her organs were failing, and they could no longer give her chemotherapy. All they could do was provide comfort measures for her.

As a health care professional, I have always been on the side of treating. I was now on the other side, and I have never felt so helpless.

She passed 7 days later at MD Anderson with her husband and family by her side. Those last days I spent with my aunt will stay with me for as I long as I live.

My uncle gave me a hug as he cried and said, “Thank you for everything. I could not have done it without you. I do not know much about medications or treatments. You were so helpful in answering our questions and interpreting what the doctors were saying.”

His gratitude made me think about patients who do not have someone they can rely on to answer their health-related questions or help them navigate the overwhelming and complex health system and health care issues. I can see why patients may feel like they are at the mercy of their health care providers. Even I felt like I was at the mercy of the doctors.

This experience not only changed me forever, but it was also an eye opener for me as a health care professional. As health care professionals, it is easy for us to take our knowledge for granted. Patients may not fully understand the diagnosis, treatment, and/or prognosis. They may feel embarrassed to ask questions or may not know what questions to ask.

Have laboratory tests, diagnostic tests, and medications become the priority? What has happened to good bedside manner?

As health care professionals, we must make efforts to make our patients and their families feel comfortable. We need to have patience and show compassion to our patients.