On being a patient

By Johanna D’Addario

I am a PA, and I am a patient. It has taken the past 10 years to learn to carefully navigate these two very different roles. Perhaps being a provider makes me a better patient, and perhaps my experience as a patient has made me a better PA. I’m sure there are others reading this who can say the same.

In his 1927 JAMA article, “The Care of the Patient”, Dr. Francis Peabody described the relationship of art and science in medicine. In the editorial piece, Dr. Peabody shares with readers his impression of the practice of medicine, that, “in its broadest sense includes the whole relationship of the physician with his patient”. 1

During the last semester of my PA training, I was diagnosed with the same genetic mutation that was passed on from my grandmother, to my father and two of his siblings, and to my brother and some of my cousins. Mutations in this gene, called CDH-1, lead to a significant risk of gastric cancer and lobular breast cancer. That year started my journey through the medical system: I have since been a patient to two genetic counselors, three surgeons, two pathologists, a medical oncologist, a gastroenterologist, a reproductive endocrinologist, a physical therapist, a nutritionist, a social worker, a PA, and three APRNs. Whew.

My career is as a PA, but much of my identity is as a patient. This experience often helps me reflect on my own medical practice.

When I was discharged from Memorial Sloan Kettering Cancer Center in December 2010 after a prophylactic gastrectomy (that, thankfully, turned out to be curative) and a 7-day hospital stay, I had a hard time saying “goodbye” to my surgeon. Essentially, he saved me from the inherited disease that took my grandmother and my father. I felt connected to him, and also indebted to him. He took the time to listen to the events of my day: how well my pain was controlled, what I had eaten, whether I was able to sleep. I felt that he cared for me as a person, not simply as another patient. To this day, I still think he does.

I recall seeing him for follow-up visits at MSKCC. At my nine-month appointment, he asked how I was feeling, reviewed my labs, and discussed my nutritional needs. We chatted briefly about my job and his summer vacation. I gave him a copy of my favorite novel, Cutting for Stone, by Abraham Verghese. He gave me a bear hug.

I had much of the same experience at Yale-New Haven Hospital when I was diagnosed with invasive lobular breast cancer in 2015. Dr. Hofstatter had been seeing me for a few years by that time, for clinical breast exams and surveillance visits. She took the time with Tom and I on the day of my diagnosis to explain the plan and answer all of our questions. She sent me a note on the day of my mastectomy letting me know she was thinking of me. At every follow up visit, she asks how I am doing emotionally as well as physically. She listens to my fears, allows me to cry, and hugs me every time.

Medical providers are taught to understand symptoms, diseases, lab results, and medication doses. But as patients, we have to learn to trust our providers to also guide us through the complex process of healing. Not only have my providers been knowledgeable, but they are kind and empathetic. I wonder if they think of me as a patient, or if they also share the emotional connection I feel for them. The people who saved my life, twice.

Reflecting back on this experience, I often wonder: as a PA, should I try to separate my emotions, at least somewhat, from the science of medicine? Should I avoid making emotional connections to my patients, for fear that it might impact not only my care for them, but take a toll on my own emotional well-being? Should I maintain my professional boundary so I don’t get entangled in the personal lives of my patients? As a patient, I would argue no. As a PA, I like to think that my emotional connections are felt by my patients as well.

As Dr. Peabody so adeptly concluded, “Time, sympathy and understanding must be lavishly dispensed, but the reward is to be found in that personal bond which forms the greatest satisfaction of the practice of medicine. One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.” 1

Any of us who have been on the other side of patient care can attest to the vulnerability that comes with being in the hands of medical providers. Hopefully, even during my long, frustrating, or stressful days at work, I can remember that vulnerability, and be the medical provider who makes a personal, caring connection with each of my patients.

  • Peabody, FW. The Care of the Patient. JAMA. 1927;88(12):877-82.

 

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