Dear Doctor: Hope and Options – Experts by Experience
I recently spoke to 165 first-year medical school students at the University of Pittsburgh. It was their first day in the class, “Introduction to Being a Physician,” which is dedicated to the doctor/patient relationship, and focuses on humanism in medicine. The preceptor told me that previous students, who are now medical residents, remember the course and talk about it with their patients. This was my first time speaking to medical students, and I knew it was an opportunity to leave an advocacy legacy.
I told the students about my life as a young mother of two boys, one with profound disabilities and multiple special needs, and how I juggled that with a big career...while undergoing aggressive treatment for colorectal cancer. I spoke about the two lowest points of my ongoing journey: When my older son, who was ten at the time, asked me, “Mom, are you going to die?” And, when I would sit on the couch, helpless, with a take-home pump of chemotherapy running through my veins, while my husband and elderly parents changed my younger, disabled son’s diapers, lifted him, fed him, cared for him–all the things his mother was supposed to do but couldn’t.
I talked about the utter shock and disbelief displayed by all of my doctors because I was diagnosed with cancer in 27 places in my body, despite no risk factors and no family history.
Life is filled with unfair circumstances. I don't blame God.
I shared my faith beliefs with the students; one of them asked, “How did you rectify those with what happened to both you and your son?” I told her, “Life is filled with unfair circumstances. I don’t blame God. I ask Him every day for strength and wisdom to deal with all of it.”
Being a patient overshadows everything else you’ve worked so hard to achieve. It destroys any and all plans–like Kryptonite, that strips your super powers. When I went for treatment, I found it refreshing that my oncologist, physician assistant, and nurses asked me about upcoming plans, because it kept me looking ahead–talking about my plans reminded me that I was still Stacy, and still living my life.
Patients want two things: hope and options.
I believe that patients ultimately want two things: hope and options. I told this class of future physicians that when delivering a devastating diagnosis, look the patient in the eye, and sincerely acknowledge that it sucks. But also let them know that you are on their side–fight for them and with them.
It pains me when I hear that patients may have to wait for a week to learn the results of their scans. My oncologist asks me to schedule PET scans on the day that he is rounding in the hospital. After I’m done with the scans, I email the nurse, who informs my oncologist, and he literally chases down the radiologist to read the images. Within two hours, he calls me with the results of the scan. Our lives, as cancer patients, depend on those scans! Test results should be delivered to patients in a timely manner, to minimize their anxiety.
Ask: What is the best way I can help you?
Physicians should get to know their patient as an individual. They should ask him/her, “What is the best way I can support you?” Learn to recognize whether your patient is having a good or bad day. My oncologist knows when I’m feeling up or down–he hugs me, holds my hand, and tells me he loves me. While that may be extreme, he knows that level of closeness is what I need to achieve my best possible outcome.
I also told the students, that while many in the medical community may advise against getting attached to your patients, I’m here to tell you this: get attached. Because when you do your job correctly, they’ll get attached to you–and it will make all the difference.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Stacy Hurt, MHA, MBA, is a 20- year healthcare executive turned patient consultant, advocate, blogger, and public speaker. She is a stage IV colorectal cancer survivor. Her work focuses on raising awareness of issues such as accessibility, hidden disabilities, and survivorship. Stacy’s story has been featured worldwide on such media outlets as the Today Show, Fox News, People magazine, and Forbes magazine. She lives in Pittsburgh with her husband and two sons. She has a website, and you can find her on Twitter at @stacy_hurt.