I was diagnosed with breast cancer at age 38. I underwent a modified radical mastectomy and TRAM-flap breast reconstruction. And later I was treated with radiation. After the crisis was over and I had time to reflect, I realized that the support I received from my husband, family, friends, other patients and the medical community was not only heart-warming but essential to my complete recovery.
During our own struggle with breast cancer, my husband Denny and I learned that our generally positive experience was not the experience of many breast cancer patients. Many newly diagnosed women found themselves without a cushion of support medically or mentally thereby diminishing their probability of a full healthy recovery. This prompted me to become an advocate of what I call "patient-centered medicine."
For me, a crucial element to my patient-centered medical experience was a course of action which I took for granted at the time the seamless referral. From the time I called for an appointment requesting a second opinion in 1990 until today, as I continue to manage my lymphedema, my medical community provided me with priceless and timely, seamless referrals. In my case, these referrals were managed by one person the breast care clinic coordinator. However, this could not have occurred without the compassionate cooperation of a whole host of medical professionals. Immediately after my phone call to the clinic, I began to reap the benefits. I received guidance on how to gather my medical records necessary for a second opinion. I was scheduled for a consultation with both a surgeon and a reconstructive surgeon simultaneously at our request. I was put in contact with a patient who had undergone a similar procedure to the one I was considering. I was scheduled for consultations with an anesthesiologist, a radiologist/oncologist and a physical therapist as needed. And, as time went on, both my husband and I were referred to support groups which in turn provided us with information on advocacy groups, current literature, medical research and clinical trials. I want to stress that this experience did not feel like riding on a medical assembly line but more like being supported by a medical team focusing on my medical care and recovery.
My husband and I have heard accounts of women lost in a medical abyss desperately attempting to manage their own medical course of action not knowing there are physicians who practice patient-centered medicine by closely associating themselves with like-minded hospitals, clinics, medical professionals and even support groups. Thus creating an atmosphere conducive to seamless referrals.
Pennsylvania's Hershey Medical Center where I was treated is a teaching hospital associated with Penn State University's College of Medicine. I decided to share my positive experience as a patient with the medical students there in hopes that they might better understand the value of patient-centered medicine and adopt the view of participation in the team approach necessary to achieve it.
Having had absolutely no connection with the hospital prior to my diagnosis, I was surprised and delighted that the Humanities Department faculty was so receptive to my proposal. I was invited to share my patient experience with the medical students and have done so for the last 8 years using poetry, artwork, and narration through venues such as a class course called Cancer: The Patient's Experience, student assemblies conducted by the Humanities Department, and presentations to the student chapter of the American Medical Women's Association.
When I first attempted to draft a speech explaining the importance of each person's contribution to my own healing process including my husband, family and friends, the explanation became a litany of names and personal anecdotes which took far too much time to tell time-starved medical students. Instead I created the painting Patient-Centered Medicine.
For the last 2 years I have organized (as a volunteer and patient) an art exhibit featuring 50 works by breast cancer patients and their families for display in the college's art gallery. Patient Centered-Medicine was included in that exhibit and inspired first-year medical student Jennifer Bau to write a poem entitled Sag about her reaction to the painting (see "Through the Student's Eyes"). I was deeply gratified by the eloquence and insight of Jennifer's poem. It is clear to me that this future physician is as concerned as I am about the further expansion of patient-centered medicine with so many medical establishments and physicians struggling to survive our changing times.