Abstract
I met Hank during my palliative medicine fellowship after his nurse Cynthia paged me to request a consult for existential suffering. When reviewing Hank's electronic medical record, it became evident he was dying and averse to speaking with strangers. Per the notes he was coherent, despondent, and unhappy to be in the hospital. While making my way to his room, I deliberated over the best way to initiate a conversation with him. I was nervous, surprisingly more nervous than when operating on critically ill patient's for life saving surgery. My mojo as a general surgeon had unexpectedly vanished and could not be relied upon in these moments. Training to be a palliative medicine specialist was subtly seducing me away from my surgical persona and comfort zone. I was learning how to embrace uncertainty and relinquish control over patient encounters. A clinical practice foreign to me as an emergency general surgeon who's doctrine had been to maintain constant control. This newly chartered territory of professional vulnerability would never be acceptable “as the captain of the ship.”
My nerves derailed me for a few more minutes, while I checked in with Cynthia to see whether anything had changed with Hank since our initial conversation. Cynthia's display of affection for Hank was endearing, they had established rapport despite his reputation for being brusque. If Cynthia had established rapport, I was more confident I could too. Hank had uncompensated heart failure, he was at the end of a six-week hospitalization during which time disease-directed treatment options had been exhausted. Dr. Steve, Hank's primary care provider, was planning to speak with him about end-of-life care and hospice enrollment. Cynthia thought Hank and his family would benefit from palliative care support during their impending transition from treatment-focused to comfort-focused care. Given what I knew of his trajectory and pre-existing doctor–patient relationship, my role was to explore Hank's understanding of his condition, ask about unmanaged symptoms, and identify what was most important to him at this stage of his life. While walking to Hank's room, I reminded myself to let go of any expectations or specific outcomes for our visit, an approach antithetical to my earlier surgical training and continued throughout my surgical practice.
I knocked on Hank's door and peeked into his room. He was sitting in his bed watching television. “Can I come in and speak with you?” I asked. Hank replied “if you must.” I entered his room with hesitation, reached out my hand and introduced myself. With interest, I asked him how he was feeling, to which he replied “fair.” “Are you having any pain?” I inquired, Hank was consistent in responding with one word answers saying “no.” I proceeded to ask him about other distressing symptoms, and eventually got around to what the plan was for his care moving forward. Hank said “he wasn't sure” because he was waiting on Dr. Steve's visit the following day. I found his answer intriguing because so many patients these days don't have a primary care physician, let alone one who visits them during an acute hospitalization. Dr. Steve had made regular visits to the hospital checking in with Hank and collaborating with his specialists. Now that his cardiologist had run out of disease-directed treatment options, comfort-focused care was being recommended and Dr. Steve was pivotal in facilitating that transition in care. Since maintaining a conversation with Hank was more difficult than most operations I perform, I was just about to head for the door, when he started sharing details about his life. I learned about his enduring marriage of 52 years, the passion he had for his wife and children, and how family gave his life meaning. He told me he missed writing technical manuals on his desk top computer, and felt a profound sense of loss being away from home. I could see Hank feared the life he loved was over. He was emotionally heartbroken, and physiologically in heart failure after a code blue and “successful” in-house resuscitation five weeks earlier.
At the end of our visit, Hank surprised me with one of the nicest compliments I've ever received from a patient. He said “you suffer from being interested.” As we said our goodbyes, I asked him whether I could visit again the next day; with a smile he replied “yes.”
I walked away wondering about his word choice, to suffer seemed unpleasant but to suffer from being interested felt like a worthy pursuit. Despite not feeling the same immediate gratification after removing an acutely inflamed appendix, our encounter was meaningful and therapeutic in a different way.
The next day after checking in with Cynthia, she informed me that Dr. Steve was planning to visit Hank later that afternoon. She also passed on that during interdisciplinary team rounds, concern was expressed that Hank could not be discharged home safely. Hank had been admitted from home where he lived with his wife in their private residence. His family stated they were unable to care for him at home with hospice and all the resources available. I knew he was eager to go home, so the thought of this not being an option was devastating.
With the door ajar, I peered into his room. Hank turned to look at me reacting with a grin. I settled into the chair next to him as he lie comfortably in his bed. His stature impressed me, he was a large man occupying the full length and much of the width of his hospital bed. As I sat there looking at him, the mood became increasingly more intense. While patiently waiting for him to speak, I started to feel nervous again. I engaged my active listening skills, while reflecting on mindfulness meditation techniques recently learned during a workshop for hospice and palliative medicine providers. After a long uncomfortable silence, accompanied by several deep meditative breaths, Hank painstakingly looked at me and said, “am I dying?” I held his gaze, gently nodding, reached out to hold his hand, and said “Yes.” From the same piercing blue eyes that barely made eye contact with me the day before came a trickle of tears, and more contemplative silence. Eventually, he went on to say “you mean I'll never go home and live with my wife again?” It was as if the flood gates opened. Hank's belly began to cry uncontrollably, and a copious amount of tears collected in his distinguished gray beard. I squeezed his hand while offering him a box of Kleenex, and asked why he couldn't go home. “I've lost my independence” he responded. Just then, Hank's wife arrived. Her petite 80-pound presence was an enormous influence on collecting Hank, until he suddenly blurted out “I wish I'd never been resuscitated.” Hank's wife tried to reassure him by saying it hadn't been his time to die, but he was angry and fearful that death was once again looming.
Later that afternoon I met Dr. Steve outside of Hank's room. He was a friendly philosophical handsome middle-aged man. The plan was for him to speak with Hank about transitioning to comfort-focused care with hospice support. With Hank's permission, Dr. Steve invited me to join them during their conversation. What I observed thereafter was the magic that occurs between a doctor and a patient when there is mutual caring, trust, and respect. I watched Dr. Steve tenderly put his hand on Hank's chest, look him in the eyes, and recommend the care plan he thought was best. Hank lay in his bed comforted by Dr. Steve's presence, open to his touch, and intently listening to his advice. The intimacy these two men shared was beautiful, and in many ways reminded me of the loving exchange I had observed between Hank and his wife earlier that day. Their doctor–patient relationship moved me then as much as it still does today.
Five days later, Hank died in the middle of the night never making it home. I went to check in with his nurse, as I had done the previous four mornings and was informed of his death. Standing at the nurses station, I had a flashback to seeing tears roll down Hank's face while he said he didn't want to die. I wondered whether he had suffered in the final moments of his life or transitioned peacefully. I felt loss, not being able to see him again or say goodbye. There was no closure, he was gone except for my memories of what he taught me and the gratitude I had for being challenged by our encounters. Hank's unique set of words have stuck with me and continue to motivate me to stay interested in my life and relationships. Hank helped teach me that giving up control and leaning into uncertainty are paths to interpersonal growth and that challenging interactions that force us out of our comfort zones have the potential to change our lives—especially when we dare to “suffer from being interested.”