Improving Liver Cancer Education

During his retirement, Sarah's father, Don Bauer, was an active volunteer at the local food pantry. He was a stoic, “suck it up and do it” kind of person. He enjoyed being on the road because he traveled often during his career. 

Don's liver cancer journey started around the holidays in 2022. In December, he had a routine physical exam with his primary care doctor. His lab results were normal, except for his elevated aspartate aminotransferase (AST) levels. Liver function tests check the levels of certain enzymes, such as AST, and an increase in AST levels may mean liver damage, liver disease, or muscle damage. After his lab results, his primary care doctor prescribed some medications. However, his AST levels climbed over the next few weeks. An ultrasound exam displayed multiple nodules on his liver, and a CT scan presented pervasive involvement in his liver. The exams also indicated that the cancer had spread to his lungs, which his doctor later confirmed to be metastases. On Tuesday, March 14, 2023, Don was diagnosed with hepatocellular carcinoma, and on Friday, May 12, 2023, he passed away. 

Sarah credits Don's primary care doctor, who guided their family before and after his whirlwind diagnosis. After receiving the first medical opinion from the primary care doctor, Sarah's former attending physician helped Don receive a second opinion from an oncology team. While a timeline was never given, the oncologist team stated that Don's medical condition was "treatable, not curable." As a result, Don was mentally prepared to live with a chronic illness but was not aware that he had less than two months to live after his diagnosis. 

After consulting the oncology team, Don started immunotherapy on April 18, 2023. He also enrolled in a clinical study to see if Y-90 radiotherapy, a procedure that sends radiation energy into the liver tumors, was a viable treatment option for him. He was not a valid candidate due to the severity of his cancer. After his first round of immunotherapy, Sarah's family planned a trip to their favorite vacation destination in North Carolina. They were initially apprehensive, but Don insisted that they go. During their trip to North Carolina, Don's decline was rapid. While driving back home, Sarah's family had to take him to a trauma center in rural South Carolina. There, Don was diagnosed with bilateral pneumonia and went into hepatic renal syndrome. A few days later, he passed away.

Sarah is grateful for the palliative care team that took care of her father at the South Carolina trauma center. She also appreciated the honesty of the physician who diagnosed her father with hepatic renal syndrome because he made it clear that her father was near the end of his life and insisted that they switch to palliative care. Due to the physician's candor, the rest of Sarah's family back in Chicago were able to fly to South Carolina to visit her father before he drew his last breath. 

After her father's service, Sarah read the book Being Mortal by Atul Gawande. The author's experience with helping his surgeon father navigate treatment for a terminal illness resonated with her experience helping her father with his liver cancer care. Several questions came to mind when she read the book: 

• "What do you want when you're near the end of your life?" and 

• "What is most important to you?" 

She wished those questions were asked when her father received his diagnosis.