Notes from the Hospital Bed | Care Team Successes and Failures | Episode One

As a patient advocate and public speaker I am lucky to get many opportunities to impact the way people see illness. Out of all of my talks I’ve given to groups of doctors, nurses and social workers over the last two years, this presentation is the one I believe is the most valuable. I do not speak about lifestyle topics in this presentation, but simply talk about my positive and not-so-positive experiences as a patient with a care team. My hope is to provide insight to the people who are responsible for the comfort of a person who is ill.

I truly believe storytelling is an effective way to elicit understanding and empathy. The following is a synopsis of this presentation. If any of these stories seem familiar or if you have stories to add, I would love to hear your experiences and input. Feel free to comment below!

Diagnosis

Successes (bolded within the story)

My diagnosis with ulcerative colitis was a bit unique in the best way possible. My symptoms appeared suddenly and were immediately severe. I went from a normal 18-year-old to running to the restroom 10-25 times a day with painful cramping and urgent bowel movements. My parents and I believed it was Salmonella. We made an appointment with a local gastrointestinal (GI) doctor two weeks in advance (which is not bad for a specialist). When I walked into the office, the doctor greeted me warmly. We sat down and I started talking about my symptoms. His jovial expression gradually changed to furrowed brows and a look of deep concern. After hearing about my sudden weight loss and bowel movements, he told me he would like to send me home to do a colonoscopy prep (including three fleet enemas since it was such short notice); he would clear his schedule and have me back in three hours to do a colonoscopy. This was so sudden, but he obviously understood the gravity of the situation and made me feel like I was in good hands.

Three hours later I was in the cold procedure room with tears in my eyes after signing the consent form that warned about perforated bowels. My GI reassured me I wouldn’t be awake for the procedure and asked me what kind of music I liked. I responded “Jazz.” He quickly turned the music in the room to jazz and told me I would fall asleep before the fourth measure. This small, unnecessary act of kindness soothed my anxieties.

Not-So-Successful

You will never hear me speak ill about my gastroenterologist. He truly is an empathetic, gentle soul who is so great at what he does – however, the nurse who prepped me for my first colonoscopy seemed to be a little less empathetic. After I had given myself my first three enemas and took the “delicious” Preparation H solution, there was still a bit of concern that I was not completely “cleaned out” since I hadn’t fasted. The doctor ordered an enema to be done in the prep room. The nurse walked in with a large IV fluids bag full of water. She gave me one, large, painful enema and instructed me to “hold it.” After I released that enema, she said she wanted to do another. At this point I was crying because a huge amount of fluid inside of a very sick, inflamed colon is not a pleasant thing. She assured me she would stop the enema when I told her to stop. About five seconds after she began that second enema I begged her to stop. She continued and just told me, “You’re doing so well.” I cried, begged and screamed for her to stop the enema. She continued. Finally, I had to push her physically out of the way because I simply could not “hold it” any longer. I pulled the enema out and ran across the hall to the bathroom, spewing water out of my rear end (luckily I truly was cleaned out)! I was in pain and I was embarrassed, as it was a shared bathroom for ten prep rooms. As I walked out, doctors and patients snickered quietly.

In short

Successes of my care team during diagnosis were that the doctors and his personal nurses made me feel cared about, reassured and listened to me.

Failure of the care team was the nurse in the prep room who did not listen to the patient. She told me that I would have a certain amount of control over what was happening to my body and that she would follow my instructions – but then when I went ahead and asked her to stop, she did not keep her promise. I believe that if the nurse would have been honest with me and told me “I need to try to give you this whole enema,” I would have felt less powerless than being told “I will stop if you ask me” and having that power taken away from me in the moment I wanted to exercise it.

Laura Cox – Shield HealthCare

Click here for Episode Two.