AAHPM — Summer Quarterly 2012
THE ART OF CARING
The Stories We Carry and Continue
I am addicted to stories and consider my job as a family doctor to be a natural extension of my love of reading. Having cared for thousands of individuals, I am a repository for countless narratives of joy and sorrow and everything in between. It is not uncommon, when separately interviewing the same patient, to find the story obtained by my medical student or resident to be quite different from the story I recount. I believe this demonstrates not that one story is more legitimate than any other but rather that the story is a product of a singular pairing of storyteller and story receiver. Because of the countless new ways to hear, interpret, and shape a story, hope and even miracles arise.
In my work of story gathering and grappling, I have discovered that end-of-life chronicles have the greatest potential. I say “potential” because these stories do not conclude with a definitive “the end” but are often poignant reflections that carry on in the lives of those who have the privilege to receive them. We think of death as being absolute, but, in fact, as we listen to the final words granted us, we contemplate their meaning and wonder about further possibilities. In our connection with this person, we acquire and take hold of a story unfolding. And so I offer a small tribute to some remarkable patients whose stories enliven my ongoing work of doctoring.
Carlos was my first patient during my third year of clinical clerkships in New York City in the mid 1990s. I had not yet learned about palliative medicine, and the task at hand was to learn internal medicine. Carlos was a gay Puerto Rican man who was unable to leave the hospital due to myriad AIDS-related illnesses. Our lives crossed paths during that scary era before protease inhibitors. As a medical student, I had nothing to offer but my time and attention, and I collected and wrote his stories. I learned a lot about internal medicine from Carlos—from Mycobacterium avium complex to Kaposi’s sarcoma—but I learned even more about life and life close to death as he related countless stories about friends with AIDS. Without any close gay friends of my own at that time, I learned much from Carlos about what it meant to be a minority and gay. Sadly, I would never have a chance to share with Carlos that 1 year later my brother would come out of the closet and later become one of the leading lawyers advocating for lesbian, gay, bisexual, and transgender issues in the country. As I carry Carlos’s story with me it becomes a part of a larger historical narrative moving, it seems, from dark to light.
Max and Geraldine
Another story I carry with me is of Max and his wife, Geraldine. The couple was among my first patients as a young attending physician in a community health clinic in the Pacific Northwest, and we had gotten to know each other through years of visits. Their background was a humble one, having retired from managing an apartment complex in a small town in Oregon. Max was literally larger than life, weighing more than any scale could record, and one inevitable day his organs could not support him anymore. A gifted storyteller, the characters from Max’s stories joined me at his beside in the intensive care unit: his son, the high school principal from Oregon; his vivacious Panamanian daughter-in-law from Miami; his son who was stationed in Afghanistan, and, with the help of the Red Cross, had arranged to come home to bid farewell to his father; and his grandson’s wife, a second-year medical student at the University of Washington. Intubation did not deter his presence of will; he instructed me, in writing, to “pull it out” and we shared a moment of farewell in a tear-filled gaze. From Max I learned that no matter how unassuming the person, a network of rich stories that spans a globe can be found within him or her.
Sam was an old man full of stories granted by age, but I would not hear his tales. I met Sam in the hospital when he was dying of recurrent metastatic tongue cancer. His tongue was so engorged with cancer that he couldn’t breathe, let alone speak. A palliative tracheotomy was placed. Sam was confident that remission was again possible as it had been at Duke University years before. All the specialists, however, said nothing could be done, and as my week rounding in the hospital came to a close he allowed me to arrange hospice care for him. So many days of procedures and conversations had transpired around his grotesquely distracting tongue that I still hadn’t had a chance to really meet Sam. I only had 1 more day left to care for him. And so I asked him, “What did you used to do?” With the help of his wife, he stated that he had laid railway tracks across the country from his home in North Carolina to the West Coast. I could be left with no more romantic an image than of Sam eating his lunch on a railway tie before a vista of the great American West. Sam is long gone but his stories are whispered along tracks connecting me to this black man from the segregated South who witnessed both the marvels of twentieth century technology and the civil rights movement, which paints images of the past in my mind’s eye in colors so vivid they defy words.
These stories have stayed with me these many years and continue to influence my ongoing work as a clinician, healer, advocate, and teacher. These narratives shared at life’s end focus me on their meaning and intent. As stories are breathed to me, I become part of them, and so they live on as I carry and continue them.