There was nothing wrong with Sarah’s vocal cords. Her tumor had spread throughout the abdomen, but her voice was unaffected. Yet minutes after learning of the voraciousness of her metastases, she pursed her lips and began to communicate with head nods and hand gestures only.
I met her for the first time in the nursing home. I sat down quietly at her bedside on a Sunday morning. I was in the midst of a weekend call rotation that would last fourteen days. Then, because of a scheduling snafu, I would have a few evenings off before starting my next two week stint. Only one weekend to rest all month.
We communicated in the most rudimentary fashion. I asking open ended questions, and she nodding from time to time. Her body was growing week. Her belly had become progressively distended, and she was no longer eating. I called her closest relative, a sister half way across the country. We talked of hospice and palliative care.
When I spoke of dying, Sarah would close her eyes. Complex conversations were reduced to the most basic. It took almost a week to establish her wish to be DNR, and a few more days to get consent for hospice. All the while juggling multiple crises at once, my sleep schedule was interrupted on a nightly basis. There were other patients drowning in a sea of disease and frailty. And I, muscles overwhelmed with lactic acid, was trying to row a lifeboat to each lonely oasis.
When Sarah began to die in earnest, I called her sister and asked her to come. After hours of travel, she arrived at the bedside late Friday evening. Relaxing on the couch in preparation for my sparingly precious days of rest, the mobile rang at my side. It was my answering service.
Dr. Grumet, I know you’re off this weekend, but the nursing home called and said that it was an absolute emergency.
Indeed it was. Sarah was dying. Her sister was petrified and wanted me to come to the bedside. My partner on call new nothing about the case, and the hospice team hadn’t arrived yet.
And this is what’s so difficult about doctoring. Our patients and their families so desperately need us to be engaged and present. Yet being there is often inconvenient, exhausting, and ultimately unhealthy. We delay sleep, impose on our spouses, and deny our children.
We met briefly the next morning. My wife and kids ate breakfast at the Panera next door as I sat with the two sisters whose hands laid intertwined on the bed. Although Sarah was fading quickly, she had just enough strength to lift her head. I barely recognized the soft syllables that tumbled tentatively from her lips.
They were the first and last words I ever heard her say. I nodded my head graciously, and ambled next door to join my family for breakfast.
Jordan Grumet is an internal medicine physician and founder, CrisisMD. He blogs at In My Humble Opinion.