Leaving a Legacy: Connecting in a Time of Crisis
Contributed by Rod Julian
Have you ever been a part of a big moment in someone’s life? Maybe you witnessed the birth of a baby or held someone’s hand as they awaited a lifechanging diagnosis. It’s both wonderful and terrifying, and healthcare providers have the uniquely rewarding opportunity to play this role every day. With every surgery, every diagnosis, every improved quality of life, they are reoccurring characters in humanity’s big moments. And while the world will always need their skill, there are other components to treating a patient that are less celebrated, but still significantly shape these big moments. Kindness and connecting with others matter.
It was the year 2006, and after 9 long years of melting in the Texas humidity and living too far from home and family, I was finally moving back to my home state of Indiana. I was ready for Hoosier country more than I could say, mostly because my mom, dad, and brothers would be just a quick car ride away.
A week after I got settled into my new home, I got word that my dad was having some pain and needed to get some tests. He was an otherwise healthy, hard-working guy who rarely had any interactions with the healthcare world as a patient. So, I didn’t think too much of it. “He’ll be fine,” I told myself.
What we learned next started an unfortunate, fast-paced situation that none of us could have seen coming. The diagnosis came back shortly after his tests – bile duct or pancreatic cancer.
Now mind you, I have numerous family members who work in the healthcare industry, including my mom, brother, uncle, and even me to a degree. Still, I didn’t have much understanding of cancer other than the knowledge that treatment had progressed immensely in the last 20 years. Lung cancer and brain cancer seemed to be the really bad ones, but how could a pancreas cause that much trouble?
That’s where I began to learn very quickly. I immediately went to the internet to absorb everything I could about this type of cancer. The information was terrifying. The 5-year survival rate was under 5%. No good treatments, rapid decline, and almost certain death.
WHAT?!?
As a patient, my dad was stoic. He didn’t want to show emotion, and we all lacked understanding. How do you comfort the strongest man you’ve ever known? What now?
Our focus was to get educated – to find answers and act fast.
We learned from our oncology surgeon about an invasive procedure that could remove metastases and could potentially be lifesaving if the cancer hadn’t spread too fast or too far. The sinister aspect of pancreatic cancer is that it is often diagnosed very late in its development. Typically, after it has already spread and evolved to Stage 4. And that’s what happened with my dad.
This news was devastating. As dad went into surgery I thought, “Dad’s going to be OK. They’re going to remove that bad stuff. He may need some chemo to wipe out anything that remains, but then life will go back to normal. Trauma over.” But the doctor comes out of the operating room and gives my family the worst news we would ever hear. “The cancer has spread, and the surgery won’t help. He’s looking at 2 to 3 months.”
The rug was just pulled out from under all of us. Life changed in an instant. The future changed in a moment. It hit me like a ton of bricks. The man I knew as Dad may not be with me much longer. My 1-year-old son wouldn’t know his grandfather. Holidays would be forever lacking. So much loss became real in a moment. There were tears, sadness, anger – so many emotions to process.
So, what now? How do we proceed? Can we extend his life in a meaningful way? How do we move forward? We had so many questions.
The surgeon was compassionate and knowledgeable. He offered us information about the cancer, and the procedure he attempted, and was supportive throughout the process. He transitioned my dad to post-op care, and we started to prepare for chemo and providing comfort in whatever way we could.
As confident and caring as the surgeon was, the opposite was true of the oncologist who took over my dad’s care. Very few answers. Very little compassion. Very poor communication. My family felt alone as dad continued to deteriorate. We adjusted our expectations and started to plan for the worst. Things just happened so fast.
It was October, just after my dad’s 58th birthday, when he passed away in our family home while in hospice care. His last couple of months were painful, sedated, and generally unpleasant. It was hard to watch the strongest man I knew become a shell of himself. In the end, there was pain, but there was also comfort and relief. His suffering was over.
This was a tale of 2 very different experiences for my family. One healthcare provider was confident and compassionate and a partner on our journey. The other was cold, disconnected, and seemingly uninformed. There should only ever be one type of experience for a patient and their loved ones.
What some in the healthcare industry sometimes forget is, with every smile, every interaction, and every kind word offered, they are building their own legacy. Their actions forever live in the minds and memories of the patients and families they treat. Throughout life, there are big moments that stay with you forever. The good ones – times of unimaginable joy, and the hard ones – the kind that break and shape you, and maybe leave you a little chipped. In the end, all anyone can hope for is to leave a legacy of kindness and empathy. Education, compassion, inspiration, good communication, and a caring heart can make all the difference.
I miss my dad. I wish he were here to see his grandkids and share in all our life experiences. To share his history and life experiences with all of us. Gone but not forgotten…