Abstract
“I
It felt cruel to withhold such information as I stared across the hall as the “father” I spoke of lay handcuffed in bed, unable to breathe without the assistance of a mechanical ventilator. But I was bound to act within the prison's rules outlined for Mr. X, however discordant they seemed in the context of his profound frailty. Tubes hung around his gaunt body in an effort to supply nutrition, oxygen, and antibiotics to organs that failed beneath thin skin. He lay listlessly amidst the din of beeping, surrounded by guards, and other strangers who were part of his health care team. For Mr. X, his current circumstances likely did not come as a surprise. He'd been living with an incurable cancer for many months, becoming weaker and more emaciated each day as his tumors grew and manifested as a visible reminder of his mortality. His tumors, unlike his body, were not confined by the prison in which he resided. Who was this man before his illness debilitated him, I wondered? What was his relationship like with loved ones? When was the last time he saw them—and how did they interact in those moments? What were the last words he exchanged with them, and did he remember these? What had his relationship been like with his daughter, and how could I help provide clarity or closure to both of them in these final moments? Was my obligation to provide comfort to her as great as my obligation to provide him comfort in his last moments?
Unfortunately, I'd never know the answers to many of these questions. I focused on my primary job: to care for Mr. X and serve as a primary means of communication between him and those he would soon leave behind. “I want you to help us provide the kind of care that your father would have wanted. Help me understand what his wishes would have been.” I struggled to find the right words to help guide the faceless voice on the other end of the line detail a sense of Mr. X's vision for his final sentient moments. Through each moment of that phone call, I yearned for better words. I desperately hoped for signals that I was on a path toward achieving what I felt was most important: building trust and conveying empathy.
During the last moments of Mr. X's life, I tried to do what his family wished they could have done in person. I breathed deeply between words as I read his family's short prayer to him as he took his final breaths. I'll never know if he heard me or felt the forgiveness his family wanted to convey, although I like to believe he did. Like many other moments in clinical practice, the intensity of watching the final moments of a person's life can be inexplicable. We want to fix things when we can. We want to ensure peace. We want to provide closure. Yet in cases such as Mr. X's and when everyone in the room is a stranger, words are sometimes all we have. In speaking to Mr. X in his final moments, I tried to conjure the emotion I know his family wanted to convey, inspired by a sense of duty to provide comfort in the face of anonymity.
I have heard people say that the “Mr. X's” of the world are imprisoned for some treacherous and unspeakable crime. These words are sometimes mentioned in an effort to suggest that the suffering Mr. X and others like him is less or unimportant. The truth is that I'll never know why Mr. X was incarcerated, nor do I want to. Like others in my care that day, Mr. X was a human being who was suffering, without any loved ones at his bedside. To this day, I don't know the complex story or path that led Mr. X to his final resting place—dying among strangers, in a hospital. But, Mr. X did reinforce for me a personal vow I took in medical school. In accordance with HIPAA minimal PHI disclosure rules1,2 designed to avoid unintentional or intentional bias in the delivery of care, I remain committed to never seek information about the reasons for an incarceration unless it is raised by the person I'm caring for and directly enhances that person's care or health.
When I was making the decision to pursue a career in medicine, I wanted to be free from thinking of justice through the lens of criminality, evidence, and the appropriate penalty. I chose to be mired in the health systems' imperfections instead of those burdening our legal system. In my idealized vision of medicine, justice means working hard to provide equitable care to everyone we serve. Justice fundamentally counteracts unequal structural forces, combats bias, transforms the landscape in which disparities are produced, and requires that we advocate for those who unjustly remain without high-quality care. In some ways, this idealized vision is what my own resilience depends on: it is one powerful force that supplies my motivation to give my all, however imperfect, to those I'm caring for. It is the desire to realize justice conceptualized in this way that allows us all to remain committed to compassionately care for those who are suffering, even when words are all we have as tools.
In the meantime, I continue to seek answers to the following difficult questions. How can we provide comfort and clarity through words alone? Are there words that can substitute for the touch of a hand or shared and loving moments of silence, meditation, or prayer in the final moments of life? How can we relieve suffering in the face of the most profound barriers?