I lay on my side while my father probed the space between my buttocks, looking for an opening in the incision. I was in bed in the guest room of my house, which had been converted into my room for the last two weeks while I recovered. My father, a surgeon himself, had assumed his professional role and examined the wound with the gentle but firm movements of someone who had done this a million times.
“Ameer beta (Urdu for son), everything looks fine. There is a little bit of serous fluid, but the incision looks completely clean.”
I tried to get up and get dressed again quickly, but I couldn’t move that fast.
“Thanks, Abu (Urdu for dad) … sorry to make you look at my hairy behind.”
My father’s eyes glimmered with the slightest suggestion of tears.
Four weeks earlier, I had been diagnosed with a sacral chordoma. For months, I had thought I was sore because I had been spending my weekends driving to visit my parents (who lived in a different city). Once my father had noticed that I never sat, but always leaned or squirmed in my chair, he insisted I get an X-ray. An X-ray turned into a CT and then an MRI. I felt an acute pang of guilt when I was getting my MRI because as hard as I tried, it was so painful for me to completely lie flat that I could not lie still during my MRI. The MRI tech kept berating me, “You need to lie still!”
The next thing I knew, I was meeting a spine surgeon. Two weeks after being diagnosed, I had a coccygectomy. Thankfully, I did not have to have a sacrectomy. To cover the area, however, the plastic surgeons had to mobilize skin flaps, and they insisted I not sit on my buttocks for the next month to ensure that the wound did not break down.
About two weeks post-op, I started to feel some fluid seeping from a tiny area at the bottom of the incision. It looked serous to me on the dressing, but I was mentally convinced that the wound was about to break down. I had a follow-up appointment with my surgeon in a few days, but I felt that I desperately needed someone to look at the incision right away. This lead to my father looking at my naked behind for the first time since I was a child. There was this immediate sense of being helpless, and my embarrassment was acute. Even though I had all my training as a physician, the serous fluid from my incision loomed large in my mind.
There is a disconnect between what we as physicians think is important and what patients feel is important. As physicians, we value the cure, the save, the hard numbers. Patients don’t always place the same emphasis. In a fascinating study performed by Erin Kennedy and colleagues, patients and physicians were asked how much loss in survival they would be willing to accept to forego having a stoma after a rectal cancer operation. In other words, at what point would someone be willing to die rather than undergoing a radical resection for cancer and having a stoma? Predictably, physicians were much less willing to accept a decrease in survival or an increase in local recurrence — about 5 percent. Patients, however, were willing to accept a 20 percent decrease in survival if that meant avoiding a permanent stoma.
A stoma is a relatively obvious change in one’s life and clearly might be stigmatizing for a patient. But what I’ve realized is that often it is the small indignities of being a patient that are hard to bear. It is the 1 a.m. blood draws so that the surgical team rounding at 5:30 a.m. will have blood work to look at. It is the lack of privacy, the dirty shared patient washroom, the embarrassment of having an entire team of strangers poke your breast, feel your hernia, and push on your tummy. It is the embarrassment of having someone help you walk to the bathroom, feeling so constipated but yet being afraid to go to the washroom and of having your father look at your buttocks.
In some ways, these are not problems we as physicians can solve. The nature of our therapy is that it often is hard on patients. What we can do is ensure that we continue to pay attention to the simple things that might make our patients experience just a little bit easier. The recent increase in research on patient-reported outcomes (PROs) is a good step in trying to understand what matters to patients with regards to their disease and the therapy they receive for their disease. In addition, it is important that on a local and institutional level that we try to understand the system from the perspective of the patients.
One possible method for achieving this is to utilize design-thinking. IDEO, the largest design firm in the world, define design-thinking as “a human-centered approach to innovation that draws from the designer’s toolkit to integrate the needs of people, the possibilities of technology, and the requirements for business success.” Design-thinking emphasizes understanding the human experience of a product, system, or process, generating tangible prototypes of new ideas, and rapidly testing to determine which ideas might be successful. Design-thinking has been widely used within business, and increasingly being implemented in health care. Regardless of the methodology, simply having an awareness of the daily struggles patients undergo can help physicians identify ways in which we might improve our systems.
It has been almost three years now since my surgery, and I have a small seroma now in the area where my coccyx used to be. Whenever I sit, I can feel a slight shift in the fluid, like I have my own personal cushion. It is a daily reminder to me to remember the “small” things and to align my priorities with those of my patients.
Ameer Omar Farooq is a surgery resident.
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