On Memorial Day, my father passed away in the hospital, 10 days after having a surgery to remove part of his colon with a tumor. He was 80 years old, but until the last few months of his life, he had been physically active, working small jobs and helping his siblings clean and sell their family home. He had more life to live.
My father came from a large, loving and very Catholic family of 13 children. He was the youngest boy, with three younger sisters. Although their house in West Mifflin was small, their family had enough land for a barn with horses and chickens. My dad told us stories of regularly waking up early to feed and care for the animals before going to school and once getting thrown off a horse as it ran out of the barn.
This childhood instilled in him a strong work ethic and even a love of work amid challenges.
My father loved music. He played the piano, guitar, accordion and sang in his church choir until he had to quit due to hand tremors. He especially loved Rachmaninov’s Prelude in C Sharp Minor, which he never stopped trying to master. I remember him teaching me the dramatic intro, which helped inspire my lifelong love of the piano. He played “hippy” music on the guitar, including Bob Dylan and Peter, Paul and Mary. Despite his short hair, I’ve always considered my dad to be somewhat of a hippy, going his own way, doing his own thing and always questioning authority figures — including, for better or worse, doctors. He seemed to lose some trust in them after my older brother, Paul, passed away from leukemia at 17 in 1986.
Although he highly valued education and was urged by a high school physics teacher to study physics in college, my dad started his own construction company. He ran the company with his brother and employed dozens of relatives. Toward the end of my father’s funeral service, my brother asked everyone who my dad had done work for to raise their hands. Nearly everyone there did. A few days earlier, even though he was in very poor health, my dad had recognized his surgeon as someone whose house he had built decades ago. While he was in the hospital, he pointed outside to a hill with a cul-de-sac and mentioned he had built some of those houses. Of course, he had also done tons of work on my Carrick home, paying for the materials and charging me nothing.
My dad was an honest, decent, good guy. He put others first, making sure that his workers were always paid in full, even when money was short because his clients failed to pay. He never complained about hardships, work-related or otherwise. These included health-related problems from decades of construction work — including hearing loss, hand tremors and various injuries. In retrospect, I believe that his constant baseline state of discomfort may have contributed to his difficulties noticing and acknowledging more serious problems to come, including the cancerous tumor that had been growing in his colon, which eventually weakened his body and left him unable to eat.
In memory of my dad, I also wanted to share some advice related to the lessons I learned in the past few weeks that I wish I had known much sooner:
- Make sure to keep in touch with and see your parents or loved ones on a regular basis. During the pandemic, we didn’t see our parents for a year or so, though we kept in touch over the phone. Stopping by — even very briefly — to visit your loved ones when possible is important because it’s harder for someone who is living with a possibly ill person to notice physical changes when they see them every day (and also may be in denial).
- Don’t assume your parents or loved ones have a complete and accurate medical history — even if you talked about things and assume they know and have this on record. Although my grandmother and aunt had had colon cancer, my dad’s doctor did not have it listed under his family medical history. His doctor likely would have pressed him more about getting colon cancer screenings had this been listed.
- Research and make sure your loved ones are aware of medical advances for treating diseases — especially those diseases with family histories. Unfortunately, my dad did not know how treatable and survivable colon cancer is today if it is caught early. The five-year survival rate is 90% for people with localized stage colorectal cancer. Unfortunately, only about 38% of patients are diagnosed at this early stage.
- Make sure your loved ones get regular checkups and early screenings, especially for illnesses for which there are family histories. I had gotten a colonoscopy last fall and discussed that with my mom. I had the wrong impression that my dad had recently had a colonoscopy but later found out (much too late) that he never did. My mom said that at one point my dad had called to schedule one but couldn’t get an appointment in the near future. Unfortunately, he never called back. I wish I had discussed the importance of early screening with my parents much, much earlier.
- Find out about the hospital before taking your loved one there. We looked up his surgeon, who actually had good reviews in a database from U.S. News and World Report but had not researched the hospital. Ideally, talk with people in the medical profession (doctors and nurses) to find out about the hospital. At the funeral home, a nurse relative said she was concerned when she learned my dad was in the hospital he was in, but it was too late at that point to move him.
- Don’t assume the surgeon treating your loved one is competent based on reviews. Our surgeon had “good bedside manner,” but he became defensive and even rude when questioned. It’s easy to be nice when people are being nice to you or things are going as expected or when people accept everything you say. Seeing how your loved one’s surgeon acts under pressure could help you understand how they might react if things go sideways during or after the surgery.
- Make sure you’re included as someone who is legally able to discuss your loved one’s medical condition under HIPAA. I had called the surgeon to discuss my dad’s surgery after my mother told us he said we should feel free to call and talk to him; however, the woman who answered the phone at the surgeon’s office told me he couldn’t speak to me because I wasn’t listed in their records. It’s also important to ask the surgeon and other doctors for the best way to contact them.
- Make sure to be there when the surgeon talks to your loved ones about their surgery. Make sure to ask about risk factors, the potential for complications and especially whether anything can be done before the surgery to mitigate risks. Research the risk factors yourself (Google Scholar is wonderful for this). My dad was malnourished and had low albumin levels, which I later researched to find was a strong predictor of post-surgical morbidity and mortality. I’ll always wonder whether building up his protein levels before surgery would have led to better outcomes (e.g. more controlled edema). I also wish we had gotten a second opinion about the timing of the surgery, in particular, whether it should be delayed for several days to bring up my dad’s protein levels.
- Ask for paperwork to read and consider prior to surgery. As a researcher, I am required by federal regulations to provide study participants with written consent forms that outline potential risks and benefits associated with study participation and to give them hard copies of the consent forms after answering all of their questions. I was amazed when I learned that my parents were never given any such written information to re-read and think about before his operation. Given the high stakes of surgeries, giving patients hard copies of information about the risks, known risk factors and possible benefits of having a particular surgery should be a federal law. The surgeon told us surgery would extend my father’s life for months, but he died only 10 days after his surgery. I understand that there are things beyond the control of the surgeon and other doctors, but potential risks needed to be discussed more to give us more realistic expectations and truly informed consent to his treatment.
- Take detailed notes of problems you encounter at the hospital. Make these problems known to the public to the extent possible with the aim of helping those after you.
This whole experience has made me realize that for-profit hospitals may be just as bad as for-profit health insurance. Hospitals have financial incentive to stop supportive care for people on Medicare (like my father) because Medicare pays a flat rate to the hospital for a patient’s stay (I’m grossly simplifying here, but this is a problem). Human life should take precedence over profits for shareholders.
Above all else, make sure your parents and loved ones know that you love them. Tell them every chance you get. I was grateful that my brother, sister and I were able to express that to my dad many times every day he was in the hospital, but I wish I had told him that sooner. I believe that the more loved people feel, the more likely they are to take care of themselves so they and their loved ones can enjoy life to the fullest extent.
Stephanie Siler is one of Pat Siler’s four children (along with Doug, Dana and the late Paul Siler). She is a researcher in educational psychology and studies science learning in particular. If you have a message for Stephanie, send an email to firstname.lastname@example.org.