You Have Cancer: Empathy Thoughts

Journey so Far. This is the latest in a series of entries written after receiving my prostate cancer diagnosis (June 10, 2019). I write to share personal and professional learnings, update friends and colleagues on health status, and promote the eradication of this filthy disease.

I am no empathy expert. I am blessed to serve in an empathetic culture which contains many. What I know is my story and my journey and how my capacity for empathy is increased.

Empathy is largely caught, not taught. I caught empathy from Wonder Woman. Being raised by holocaust survivors (one a concentration camp escapee) provided immediate perspective. My parents never disparaged those that savagely killed their loved ones, nor did they claim life was unfair. Watching Mom suffer from chronic health conditions her entire life kept my heart soft throughout my upbringing. They moved on and made diamonds from coal. As I underwent my own issues (academic, behavioral, health), I began to relate to a variety of challenges in the human condition. I did not have the vocabulary, but looking back I can connect the dots how I caught empathy.

The reason my wife is a highly decorated nurse is two-fold. In addition to technical competency, she is highly empathetic. Returning mothers request Simran by name to deliver their babies. Even the babies who grow to become mothers ask for her when it is their turn to deliver. She connects with her patients deeply. Not only has Simran given birth multiple times, but she faced common struggles to become and stay pregnant. Surviving an abusive husband and being a single mom further enlarged her capacity to experience the feelings of others. Simran decided to take all that experience and pain and use it for good. To love her patients. As we are poured into and healed we must pour the goodness back out. Less we become bitter or stale or insignificant. Empathy is the vessel.

My cancer journey has increased my capacity as a vessel. I learned what it is like to fear. To not know. To no longer be in control. I understand what is to be wheeled on a gurney in front of strangers. I know humility from perceived loss of dignity. I know the desire to eliminate pain. I learned the joy of a friendly face coming to console. The flowers that let me feel loved. I appreciate the work of clinicians. Their dedication to patients.

I still have questions around empathy. I continue to learn. I would love to study the relationship between empathy and engagement and performance. I have stellar teammates with little empathy. Would they be more stellar if they were empathetic? Is it better to be empathetic and technically good or not empathetic and technically excellent? I suspect all my nurses were equally competent, but the one who stands out is the one who empathetically hugged Simran when she saw her distress. Does one have to go through trial and tribulations to enlarge their empathetic capabilities? I suspect the empathy journey is different for everyone.

Catching Empathy. I have way more questions than answers, but I discovered tools to heighten empathy. None are a magic bullet, but leveraging a combination may help.

• This is an easy way to better understand the patient experience. It can be painful to enter this world, but if you want to catch empathy, volunteering is priceless. It requires no special license or education, just time. We can all find an hour per week to share. Include your children when possible.
• Require all your employees to shadow a clinician annually. Leaders more often. The results will astonish you. Perhaps alter lives.
• Consider serving part-time in patient care. Donate a percentage of your week serving in a patient or clinician facing role. This will be a recurring reminder why you do what you do.
• Require all leaders to round routinely on patients and interact with clinicians. You can formalize this process where everyone rounds together and debriefs insights and action items.
• Check-in. If you are not sure how to support a colleague just check in. Be human. You don’t have to be the chief patient experience officer to do this. When I had my widow maker, Adrienne stopped me and checked in. When she learned my cancer diagnosis, she was in my office and hugged me. How hard is that? She was beat only by my chief financial officer, Steve Glass.
• Connect with your patient experience leadership and team on offering mandatory classes that offer practical techniques to further empathy.
• Patient Engagement. Have patients embedded in all your IT activities. Patients help with design of systems. Patients make the best speakers at otherwise boring IT meetings.
• Our End of Life Center Medical Director is another empathy champion I serve with. Silvia brought the Pause to our organization. After a patient death, the team gathers at the bedside for a 15-30 second silence. Silvia says “The purpose is to honor the human life and the efforts of the team.”

Daily Huddles. If you do daily huddles, collectively Pause for all those who died that day. Share their first names out loud. It brings humanness back to healthcare.

• Attend the Patient & Experience Summit. I serve with two of the most empathetic people ever. Our Chief Nursing Officer Kelly Hancock and Chief Patient Experience Officer Adrienne Boissy have been leading this annual Summit for years. The speakers and workshops are amazing and practical.

Clinical Trial. We all desire to live a life of significance. We want our lives to matter for someone, for something. We quickly turn the “why me” into “what can we do” to make this journey count for something. That is the main reason for open sharing. Thankfully one thing we can do is use this experience to advance the science around prostate cancer. When we first heard of the trial we jumped right in. Okay, it took a second to get past the concept of “shock therapy.” Shock wave therapy has proven successful in treating erectile dysfunction (ED) in Germany but not yet approved in the United States. There are European clinics where treatment is performed as an elective where men pay $500 per session. While research has proven shock therapy effectiveness, no trials had been performed with men with prostatectomy. A perfect cohort for this creative therapy. Simran and I enjoy a healthy intimate life and this research brings hope to many couples like us who expect to return to full function. What an opportunity to help and advance science!

What Good can we create from this? My family created a top 10 list; here are a few new ones.

• Family Time. We are having fun playing games, binge watching Bollywood, exploring cities and deepening relationships.
• Prayer Life. Making family and couple prayer a higher priority.
• Leadership. Allowing my IT leadership team to grow in my absence.

Gratitude. I track every caregiver I interact with so I can express gratitude. We must give thanks in all circumstances, even cancer.

July 25th. Clinical Trial. Antoinette check me in and was very pleasant as always. Dr. Murthy greeted me as we walked to the exam room. He explained the clinical trial and I signed some forms indicating my agreement to be part of research. He then administrated the low intensity shockwave therapy. In my mind I envisioned two tiny paddles that he would rub together mixing gel, place on my loins, shout “clear” before zapping me with hundreds of volts. Thankfully it was not so dramatic. It is a relatively painless procedure that will accelerate healing for many.

What’s Next. Rehab out of erectile camp and summit. I have 5 more shockwaves. I am working more and anxious to return to normalcy. I anticipate being completely cleared to work full-time and restart workouts in August.

Professional and Personal Insights.

• I am thankful to serve in a research, educational and provider driven organization
• I am thankful for my experience and the things I am learning
• I am learning features needed for our new patient app
• I am becoming increasingly empathetic
• The continued revelation that I am where God wants me to be

Final Thought. I was at peace heading into surgery. Not only secure in my relationship with God and Family, but knowing my peers would say my first name that day as they Pause to honor the efforts of the care team and my life. Empathy.

This piece is the latest in an excellent blog series written by Ed Marx, CIO at The Cleveland Clinic, chronicling his recent cancer diagnosis.