The American Diabetes Association recently released screening guidelines for liver disease in individuals with type 2 diabetes. Notably, 70 percent of people with type 2 diabetes have liver disease, and the most common form is non-alcoholic fatty liver disease. Ultimately, this can lead to cirrhosis and cancer. According to the American Cancer Society, the rates of liver cancer have tripled since 1980. Currently, one in 10 Americans has diabetes, and the rates are increasing in children and adolescents. We are not talking enough about the healthcare crisis of liver disease. For me, this issue is personal.

These guidelines were years too late for my father. He had type 2 diabetes, was diagnosed with stage 4 hepatocellular carcinoma on March 14, 2023, and died on May 12, 2023. He regularly followed up with his doctors and was screened for end-organ complications of diabetes on a regular basis. He also followed through on all cancer screenings, but liver cancer is not routinely screened for in the population without identified risk factors.

Elevated liver function tests were the first recognized alarm signal that something was seriously wrong, and this occurred in late December 2022. Honestly, I thought he would be diagnosed with non-alcoholic fatty liver disease, as he had been dealing with type 2 diabetes for over two decades. I anticipated he would need to be closely followed by a hepatologist, deal with it, and move on with his active life. Instead, my father was diagnosed with stage 4 cancer. After he was diagnosed, he did not ask “why” but wanted to understand “how” this happened to him as he followed all of the known cancer screening guidelines. When you are diagnosed with a terminal illness, it is too late to discuss how research does not keep pace with community practice. It was like a meteor dropped on him, and he never had the chance to catch his breath again.

In retrospect and in conversations with my mother, perhaps there were hidden signs and symptoms. However, they all had reasonable explanations and occurred months apart from each other. For example, my mother observed mild changes in his behavior, including fatigue. He was 79 years old, and this could be attributed to age-related cognitive changes. When he took a screening test for dementia, he passed without incident. At the end of 2022, my dad started experiencing reflux and gastrointestinal symptoms. These symptoms were not persistent, occurred occasionally, and were explained as medication side effects. My father also developed episodes of morning hypoglycemia that responded to insulin adjustments. None of these signs or symptoms in isolation would have prompted additional imaging of his liver. But regular screening and surveillance of his liver could have identified it earlier and opened up additional treatment options. After his death, I learned of countless others with similar stories. These stories, along with research and expert clinical guidance, are why more vigilant screening programs are needed for diabetes and liver disease.

The last two months of his life were punctuated by doctors’ appointments, first and second opinions, and endless procedures and tests. After one round of immunotherapy, we went on a long-anticipated vacation to South Carolina. In fact, he had repeated conversations with physicians about whether or not he should go on the trip. The answer was always an emphatic “yes.” After we arrived and he saw the ocean, it became increasingly evident we needed to go home.

He was weak, not eating, and insistent that we stay. Perhaps he knew he was dying and wanted to be in a treasured place with those he loved. Maybe this was a final act of autonomy as it was so quickly robbed from him. When asked if he was scared, he replied with a gentle “no” and stated he just wondered what was next. The decision to go could have been an act of surrender, liberating his soul from a body that was failing him. We thought we could get him home to Illinois. But somewhere in the middle of South Carolina, we realized we needed to take him to the hospital sooner rather than later. We Googled a trauma center, and my father was admitted. He was diagnosed with bilateral pneumonia, developed hepatorenal syndrome, and died within days, surrounded by his family and listening to a favorite song of his from family road trips, Willie Nelson’s “On The Road Again.”

We went on vacation with a beloved husband of 51 years, father, and grandfather, and we came home without him. It has been numbing to face this reality as well as the unrelenting work of processing his cancer diagnosis and death. These past weeks have also been a time to face what our healthcare system can and cannot do. As a physician myself, I am haunted by what I missed with my own father and the failings of medicine.

We can and must do better. The American Liver Foundation seeks to build awareness and education around liver disease and cancer. One initiative, “Think Liver, Think Life,” is a national campaign focused on helping people understand their risk for liver disease. First and foremost, do what is within your control to prevent or manage liver disease. If you are a healthcare provider, educate yourself on current and appropriate prevention and screening methods and guidelines. To be sure, cancer is ruthless. It changes you, and my family’s intention is to give voice and a story to the guidelines and data.

Sarah Bauer is a pediatrician.