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Learning the patient experience

Mahan, Jennifer

Journal of the American Academy of PAs: May 2018 - Volume 31 - Issue 5 - p 1–2
doi: 10.1097/01.JAA.0000532121.07789.2b
Becoming a PA
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Each year at Oregon Health & Science University, the incoming class of PA students simulate becoming patients with one or more diseases or conditions for a week. Each student receives a medical plan of care including a medication regimen (candy tablets) and behavioral modification recommendations. Students then write a reflective essay about their experiences.

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Thursday, July 13, 2017: 3 p.m. appointment with Claire in room 5S038

I had been looking forward to this assignment. It seemed like a neat way to discover what my future patients experience while getting to eat candy, guilt-free. The day before my appointment, I was curious which diseases my classmates were assigned. Karen “had” celiac disease, which seemed simple, but eliminating gluten when I'm already vegan sounded potentially frustrating. Another classmate was assigned diabetes, but I was dreading the possibility of that one since I get faint at the sight of my own blood. A few other classmates were rocking some fashionable socks for their deep vein thromboses (DVTs). I could see that one working out well, especially with my background of shadowing at a warfarin clinic. In the end, I decided the broken wrist would be the best because it was the only one where I wouldn't have to keep a food journal.

In the end I was assigned to be a patient with DVT. The first task of this assignment, to attend an appointment with my assigned provider, went well. I had already heard the details about the DVT experience, so I was prepared to learn what was expected of me when I received my diagnosis. My tasks would be to take my new blood thinner medication, continue to take my hypertension and hypothyroid medications, wear compression socks, and track how much vitamin K I ate every day—and keep it consistent—so that my international normalized ratio (INR) remained steady. As I left the office I quickly checked what candy I was getting to eat and was pleased to see they were Smarties. On the elevator, I ran into a classmate who was assigned heart failure. After hearing that she would have to practically eliminate salt, couldn't exercise, and had to weigh herself every day, I said to her, “Thank goodness I don't have heart failure.”

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Friday, July 14: Gym, school, life as usual

Well, it looked like DVT was going to be a breeze. I like Smarties and I already wear compression socks whenever I fly. I eat the same foods every day, so maintaining my vitamin K consumption was going to be cake. My only confusion so far was if I should take my levothyroxine 30 minutes before eating or drinking anything, like the women I knew who actually take that medication. I tried the 30-minute thing that morning before my workout but decided to stop doing that since my instructions didn't explicitly say to take it that way. I went to class wearing my compression socks, mildly worried they were too small. They left marks and made my feet sweaty, but at least they kept me warm in the icebox classroom. I recorded my food journal up to my afternoon snacks. Vitamin K tracking was tricky, but an existing INR website helped. I decided I would wait until tomorrow to total up all my vitamin K because I was preoccupied with other assignments.

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Saturday, July 15: 8:46 a.m., missed call from Mom; 9:05 a.m., outgoing call to mom, 3 minutes

By 9 a.m., I had already taken my meds and my husband, Andrew, and I were getting ready to go on a hike with our dog. I wasn't wearing compression socks or tracking my vitamin K, but I told myself that was okay because I was being active and my diet was consistent. Then I saw I had a missed call from my mom and everything changed.

My older brother, Nathan, was in the cardiac ICU with newly diagnosed heart failure. We rushed to the hospital to be with him and wait for answers from his providers. He was awake and joking around with Andrew, and hopes were high when we left that evening. I told myself I would wear my compression socks and track my vitamin K again tomorrow.

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Sunday, July 16: 4:47 a.m., incoming call from my sister, 41 seconds

Nathan's heart arrested twice that night. I woke up to a call from my sister telling us what had happened and that he was sedated and on a ventilator now. At the hospital, while we were waiting for his CT, I looked down to see I wasn't wearing my compression socks and realized I had forgotten to take my medicine. I didn't journal a single food item. We left the hospital around 2 p.m. They had begun to enforce the two-visitors-at-a-time rule and, as my family members reminded me, graduate school doesn't have a pause button and I needed to get back to it. I took my medication around 2:30 p.m.

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Monday, July 17: 9:15 p.m., incoming call from Mom, 1 minute

Nathan was still critical but stable, so I decided to go to school today. I took my meds that morning and wore my compression socks. I barely ate, so food journaling was a moot point. I made my follow-up appointment as per the assignment. The novelty of the socks had worn off. Now they were sweaty leg prisons that had me counting down the minutes until class was over so that I could tear them off. I was home by 6 p.m., and 3 hours later I found out the providers feared Nathan wouldn't make it through the night.

Medical knowledge is a blessing and a curse. I was the first of my family to arrive that night, which meant I was the first to see they had turned off his vitals monitor and removed his EEG leads. Spa-like music was playing and his TV displayed peaceful images. He was dying, and I was here to be with him for that.

Try as we might to simulate the patient experience in the classroom, we will always fall short. I never feared my DVT diagnosis because even if I acted out every aspect of living with that disease, it wouldn't include the part we fight hardest against as providers. Nathan was having that experience, and all any of us could do for him was to be there. And I was; I slept there upright, holding his hand all night.

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Tuesday, July 18: 7:43 a.m., outgoing call to Mom, 1 minute

I took my meds at 7 a.m. but failed to food journal or wear my socks. Nathan passed away from complications due to heart failure at 6:30 p.m.

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Wednesday, July 19: back to school, last day of patient experience

Back to school. I took my meds right at 7 a.m. and wore my socks but still didn't track my food. I didn't see the point of it.

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