Breast cancer and the “silver lining” – a Patient Family Advisor’s perspective
This blog article was written by one of AAMC’s Patient Family Advisors (PFA). Patricia Clesh is a former patient who now lends her voice as one of about 85 PFAs who help us ensure patients and families are always included as part of the healthcare team. She shares her story here.
“I have the results of your breast biopsy and I am sorry to tell you that you have breast cancer.” I digest these words, alone in my kitchen, stunned and sickened. That was August 2009. After having gone through surgery, chemo, and radiation, I felt well enough in January 2011 to get back into the Land of the Living. Being a grateful patient, I first joined the Auxiliary and volunteered in the Breast Center. I am still there today.
But, it was in attending the National Cancer Survivor Day in June of 2010 that volunteer life changed for me. The simple survey that I completed at the end of that wonderful Sunday had several questions on it, one of which was: would you like to be on the committee for next year’s event? The committee had half a dozen meetings to plan the event for 400 cancer survivors in the spring of 2011. It was my first experience as a Patient Family Advisor – and certainly not the last!
What exactly is a Patient Family Advisor? We are volunteers that are either former (or current) patients; family members or caretakers of patients; or simply individuals from the community at large. We do not advise patients; rather we are included in discussions and committees within the hospital and lend the patient family perspective. It is to the hospital’s credit that it is transparent, inclusive, and not only listen to our suggestions, but often incorporates them. Win-win!
Over the years, my involvement has included everything from serving pineapple upside down cake to celebrate 24-7 visitation; serving on the nursing scholarship committee; and four years on the Patient Family Advisory Council (PFAC). The council is comprised of hospital administrators, staff, and seasoned patient family advisors. Annual goals, which coincide with hospital goals, are set and accomplished within the fiscal year.
My most memorable experience as a patient family advisor was participating in an end of life simulation with surgical residents. I am not sure who was more nervous — the patient family advisors, who had plenty of experience with things medical, or the residents who were surely thinking, “Wait, what?” There was role playing, complete with hospital bed in place, where several scenarios were played out. We learned from the young physicians and hopefully they left with our suggestions firmly planted and ready to implement.
What is the “silver lining”? It’s what breast cancer afforded me — the drive to give back with a grateful heart. I have met some of you in my volunteer travels over the past seven years and am so impressed with your compassion, heartfelt caring for your patients and their families, and dedication to your professions. I sincerely hope to meet many more of you in the future!
My plan is to write about future experiences, so as you see a need for the voice of the patient on your committees, workgroups, and units, contact AAMC’s Patient and Family Centered Care Coordinator, Monica Mewshaw, at firstname.lastname@example.org. She will happily reach out to our group to find you just the right person(s) to help out with your project.
Thanks for all you do!
-Pat Clesh, Patient Family Advisor