Introduction by Daniel D. Klaristenfeld, MD, FACS
The Young Fellows Association of the American College of Surgeons (ACS) offers an annual essay contest, which helps encourage and support a young Fellow’s attendance at the annual ACS Leadership & Advocacy Summit in Washington, DC. The theme of this year’s competition was Patient Advocacy, and the winning essay, by Hadley M. Wood, MD, FACS, beautifully captions the vision of patient-centered surgical care set forth by 2016–2017 ACS President, Courtney M. Townsend, Jr., MD, FACS.
I remember the first time I saw him. He was referred for refractory and increasingly resistant urinary infections and pyelonephritis—episodes that of late had resulted in several intensive care unit admissions, renal failure, and respiratory failure. Now, he sat in front of me, Broviac catheter hanging from under the edge of his t-shirt collar and looking like he had just gotten in a street fight. The man’s parents were by his side with a look on their faces with which I had become very familiar—the look of parents contemplating the loss of their adult-child’s independence or maybe even worse—the loss of his life. I reviewed the patient’s medical history and films, examined him, and poured through mountains of records. Then I made my recommendation. “You need surgery, and I am not sure that you’ll survive the operation you need, but I do feel confident that you will die of these infections without it.” A little part of me was hoping that the bluntness with which I delivered this news would inspire him to seek another opinion and another physician would be forced to assume the great responsibility of his care. But I knew better. Many were unable to give him any options. He looked me squarely in the face with his piercing blue eyes and said, “Well, that is a kick in the balls. When can we schedule?”
Attitude beats adversity
John Price III was born with myelomeningocele, a congenital condition that affects the nervous system and often results in loss of bladder and bowel function, as well as loss of motility, among other health care issues. John had endured many hard knocks in life as a result of his condition, and he was not about to have this setback be his last.
I took him to the operating room and spent more than eight hours removing his bladder and creating a urostomy. The majority of that time was spent carving his bladder and bowels out of the concrete-like scar tissue that resulted from his many prior operations. When the procedure was finally over, the anesthesia team determined that his chronic lung disease and his massive fluid requirement would necessitate a trip to the surgical intensive care unit. I went home that night feeling depleted, but didn’t sleep a wink. All I could think about was every possible complication ahead.
The next morning, I stopped at his bed last on rounds. As expected, John looked like a heap of blankets and tubes, surrounded by monitors with a stem-to-stern midline incision covered with gauze and tape, minimal urine in his stoma bag, but remarkably he was already extubated. I told him what I found in the operating room and how I was deeply concerned about his lack of urine output and that this would mean he would likely need hemodialysis to support him. Watching his eyes drift and thinking he was too narcotized to really follow me, I finished speaking and closed with my usual, “Do you have any questions?” To that, John looked me squarely in the face and said, “You mean to tell me that I spent eight hours naked on a bed with an attractive woman and nothing happened between us?” I was so shocked that it took me at least 30 seconds to hear what he said before I burst into tear-filled laughter. That was John. Even in what surely must have been his moments of greatest fear and pain, he was always trying to relieve the fears of those around him.
It turns out that his stay in the hospital and subsequent recovery in a nursing home was nearly every bit as difficult as I had imagined, but John fought through every last hiccup and eventually made it back home to his apartment.
About two years after the operation, John returned to the emergency room with abdominal pain. These visits were to be expected. He developed an incisional hernia and small fistula and struggled with obstipation related to his neurogenic bowels. The results of his computerized tomography scan that night, however, were unexpected. John had a large mass on his colon that had not been present on a film done 13 months prior. The mass proved to be a highly aggressive mucinous colon carcinoma that had already metastasized to his liver. After intensive consultation with my colleagues in medical oncology and colorectal surgery, we determined that palliative surgery would be too risky. Instead, we offered John chemotherapy.
Now, John was the last guy you would think could breeze through chemo. He had central and obstructive apnea and restrictive airway disease and severe chronic renal insufficiency. When I went to his room on the oncology floor to discuss our recommendation, chemotherapy, and the goals for the future, John and his parents listened intently. I again closed with, “Do you have any questions?” To that, John responded “Well, that is another kick in the balls. When do I start the chemo?” I said, “John, you know that this cancer is going to kill you regardless of whether you do chemo, right?” To that, he replied, “Yes, I know it will kill me, but it damn well won’t beat me.”
And beat him it did not—John lived for more than 18 months after that initial diagnosis, overcoming the odds again. And every inch along the way, he did it with a positive spirit that lifted up every person with whom he connected. Toward the end, I would steal away between cases just to sit with him and chat. His room was never empty for long, with one care provider after the next coming in just to catch a moment and a smile. He had an uncanny way of endearing himself to every person he met. Each time, I would leave his room sad with the thought of my friend’s eminent death, but lifted up by his spirit.
A call for better patient care
John has been gone now for more than a year, but he remains with me. I see him in the faces of other patients who have been rejected by society or by the medical community because they have a medically complex disease or have a disability. I feel him with me every time I see a patient deemed to be “inoperable” or “incurable” not because of their disease, but because they had the terrible luck to be born different from most of us. Most of all, I think of him when the challenges to providing the right care to a spina bifida patient seem insurmountable, because John taught me that only I can let extenuating factors beat me in this fight.
Dr. Wood is a urologist at the Cleveland Clinic who specializes in reconstructive urology and the treatment of adult patients with congenital urological conditions, including spina bifida.
Watch a video of one of her bedside visits with John that was made to advocate for lifelong services and research for spina bifida.
*Hsieh M, Wood HM, Dicianno B et al. Research needs for effective transition in lifelong care of congenital genitourinary conditions: A workshop sponsored by the national institute of diabetes and digestive and kidney diseases. Urology. 2017; 103(5):261-271.
†Eswara JR, Kielb S, Koyle MA, Wood D, Wood HM. The recommendations of the 2015 American Urological Association Working Group on Genitourinary Congenitalism. Urology. 2016; 88(2):1-7.