On compassion in the face of death

“Medical professionals concentrate on repair of health, not sustenance of the soul.” Upon encountering this line in Being Mortal by Atul Gawande, I became filled with regret. My grandmother had succumbed to leukemia only months prior, and her battle was harrowing. She, a healthy, able-bodied, gardening enthusiast with no signs of aging other than mild arthritis, was caught off guard by the diagnosis, and she blindly fought a losing battle until the very end. I remembered seeing her in her hospital bed, tired and bitter, and I remembered wishing to take her gardening at least one more time. I wanted to give her the simple but profound joy of normality and help her forget her pain, if only for a day. Yet, instead we chose chemotherapy, trying to heal her exactly as Dr. Gawande condemned. When I finally put down Being Mortal, my aching regret and newfound knowledge gave me a singular purpose: to become a geriatrician that would always put quality of life over quantity. In Dr. Gawande’s words, I wanted to nurture people’s souls in their final days.

Staying true to my vow, I began volunteering for hospice in college. When I met Spencer, a frail, bedridden man longing to live as healthy people do, I remembered my desire to nurture the soul and did everything I could to create an illusion of normality for him. We would talk about the weather, listen to music on his radio, decorate his room for the holidays, and do other things I thought would soothe his unrest. However, there was always a piece missing. Though we had our fun and he did cheer up some, Spencer carried around an unshakeable sadness, something I could not erase despite my best efforts.

Paul Kalanithi wrote in When Breath Becomes Air, “Before operating on a patient’s brain … I must first understand … his identity, his values, what makes his life worth living.” Therein laid the flaw in my approach to hospice care. I thought compassion meant bringing simple joys or distracting patients from their worries, when in fact, for people facing their mortality, performing such superficial acts of kindness would heal my ego more than their mental health. Death was prematurely looming over Spencer; such a heavy burden could not be erased, only confronted. My job as a hospice volunteer, then, was to take a portion of this burden from my patient so that it would not define his final days. Compassion requires a person to go two extra miles; it means not just recognizing, but actually internalizing and embodying the patient’s fears to better fathom their needs and act with the appropriate agency. I finally understood what empathy really meant in a medical context. It is the ultimate tool for proper spiritual, and potentially physical, treatment.

I realized it was imperative that I improve my communication if I wanted to share Spencer’s burdens. To encourage him to speak freely, I took a more honest approach, omitting the small talk and allowing lulls and silences to build during conversations. I found that this unadulterated method of communication seemed to convey a sense of honesty that increased the trust between Spencer and myself, and soon enough he was speaking freely about his worries. That immovable sadness began to fade, proving to me that above medicine, there exists the soul. My efforts were validated, and I knew I would never turn my back on this path.

Truly, the hardest thing for me to realize on this journey to understand compassion was how pervasive selfishness can be. I entered with the mindset of, “I feel good for supporting someone,” and that focus on feeling good, or the anticipation of emotional reward, really stymied the actualization of emotional support. To say that a good hospice volunteer must suffer under the weight of their patients is crass; to say that a good hospice volunteer can leave unscathed, however, is delusional. Only when I honestly felt that hospice work was ‘work’, did I begin to make progress. And, though counter-intuitive, this stress made the job worth doing. “Those burdens are what make medicine holy and wholly impossible: in taking up another’s cross, one must sometimes get crushed by the weight.”