Palliative Care and Personal Connection: Call Me by My Name
It was 1996. My husband, Sean, and I had just returned with our two young sons to Southern California so that I could take a tenure-track position at California State University San Marcos. We had spent 6 years in Tacoma, WA where I was teaching at the University of Puget Sound. Although I earned tenure, we wanted to return to the highly diverse and culture-rich Southern CA area where we could teach and mentor young people who are first-generation college students, many who come from low-income backgrounds or who had special needs. In particular, I was excited to return to the CSU, as I had earned my undergraduate degree at CSU Long Beach. I have long believed that a CSU education changed the course of my life. It gave a first-generation college student like me the opportunity to learn, grow, and achieve. It provided the foundation for a career that I never dreamed a person like me could obtain. I was, and still am, living a social mobility story that underscores the power of education. I wanted to be a part of giving that gift to others. It was these thoughts that led to the excitement Sean and I felt about starting this new chapter in our lives.
In August, one month after returning home to southern California, my father died unexpectedly from cardiomyopathy. Two weeks later, I found out I was pregnant with our 3rd son. I can still feel a keen sense of being torn in two while trying to manage the conflicting emotions of deep, devastating grief in the same body that was experiencing tremendous joy. It was made even more challenging by starting a new job a few weeks later, in an environment where we had yet to form relationships with coworkers, neighbors and friends. My husband and I held on tight to one another and our children, as we all walked the lonely path of grief. I thought I had reached my coping capacity and felt like I just couldn’t bear one more thing. And then on October 31st, 1996, I was diagnosed with melanoma.
There are many memories I carry from those days. The sheer terror in getting a diagnosis like that and the immediate worry about my unborn son, my children, and my husband. I needed blood work and a chest x-ray – something that pregnant women really should avoid, if possible. The doctor wanted to see if the cancer has spread. I was also scheduled for a wide excision, a procedure that would take additional tissue from the site where the cancerous mole was removed. There was talk of a possible need for skin grafting, which was later found unnecessary. Five years of chest x-rays and bloodwork followed, each incident with its accompanying anxiety. But there are two memories from this time that stand out among the others.
Humanizing Health Care
The first occurred when I came into the dermatologist’s office for my surgical procedure. My hands were sweaty and my heart was racing. I was taking slow, deep breaths, trying to get myself calm for the procedure ahead. I checked in with the receptionist and gave her my co-pay. While standing at the counter, she turned to her colleague and said, “Can you tell the doctor that the pregnant melanoma patient is here?” I felt as if someone had kicked me in the stomach. I wanted to shake her, and tell her, “My name is Sharon. My husband is Sean and my two sons are Colin and Conor. This baby, I’m carrying – his name will be Brendan. I am a wife, a mother, a daughter, a teacher. And I am scared to death. Why can’t you see me?” I learned later that my doctor had contacted my OBGYN to get clearance for the chest x-ray and asked, “Why is she so upset?” I guess you could say that my commitment to palliative care was established that day. Healthcare professionals need to see us as a whole person. We are more than the diseases that invade our bodies, more than the wrinkles, joint pain, and disorders that time wreaks upon us. We can do better. We can humanize the way we treat patients facing a serious illness.
My favorite memory from that time? Every day when I left for work, the last thing my husband would say to me was, “Go to work. Put one foot in front of the other and get through the day. Then come home to me.” It was lifeline that I desperately needed and the support that carried me through some of the darkest days of my life. Sean’s love and encouragement remains my most vivid memory from that time.
Palliative Care is Whole Person Care
I share this story to remind us that it is not so much what we say but the way we make people feel that determines the quality of the experience that patients and families carry with them on their illness journeys. Palliative Care professionals are in the perfect position to create positive feelings, even in difficult conversations. This message resonated with me during a conversation that I recently had with Joel Polechek, MFT. Joel introduced me to the Heart Touch Project, an organization that provides education for nurses, home health aides, social workers, chaplains, families, and volunteers so they can bring therapeutic touch to medically fragile and terminally ill individuals. Touching hands, touching hearts. That is the core of palliative care. Truly, we have come a long way in the support we offer to patients and families since 1996. But there is still much work to do.
It begins with a commitment to call patients by their names, to see them, to recognize that they are more than the disease or disorder that they are experiencing. It is what connects us. It is what we all deserve.
I am excited to share that the annual National Symposium for Academic Palliative Care Education and Research will return to San Diego in 2024! Our theme for the conference reflects our commitment to humanizing healthcare:
Integrating Mind, Body and Spirit into Whole Person Care.
Mark your calendars and plan to attend the symposium at the Hyatt Mission Bay, February 8-9, 2024 with pre-symposium workshops on February 7, 2024. The abstract submission site will open August 1st and abstracts will be accepted until October 9th, 2023. We look forward to seeing you there!
