Abstract
He was struggling to breathe; yet, able to speak clearly. His eyes were dark, deep, and gentle. His physician requested a palliative medicine consultation to assist the patient and family in clarifying treatment goals. His metastatic lung cancer had worsened, compounding the underlying presumed radiation pneumonitis and pneumonia. They heard us say, “There is unlikely to be any recovery.” Yet, they are unequivocal in their hope for a cure and recovery through prayer, as they wait for a miracle. I think, “Who are we to argue that?”
He is clear he does not want to be intubated on a ventilator, but still wants cardiac resuscitation, despite the poor prognosis; therefore, his code status is changed to “DNI.” They also agree to morphine for his comfort. This makes me feel that at least we have accomplished something in the direction of allowing us (the doctors) to “do no harm.” But this is not about me; it's about him…their father, husband, and preacher. I am here to support and serve, not to make decisions for them. With this initial consultation, I set forth my promise to remain honest and to be present. My role, as a palliative physician, is to guide, to offer choices of treatment plans and help them to stay the course when times get scary. I know, regardless of the path they choose, all roads will lead him home, and by “home” I mean death. His wife became more tearful as we discussed options, including hospice, so I decided to leave them to process, ponder, and pray.
Over the course of several days, his respiratory distress worsened until eventually, we arrived at the inevitable critical crossroad. They chose BiPap for the respiratory distress. Then, they also asked for intravenous vitamin C infusion, dextrose, steroids, and “alkaline water” infusions. I saw their request as a desperate attempt to try anything to thwart the inevitable. His wife struggled with “letting him go,” because she felt that “God has not told her yet that it is his time.” Our Chaplain advises her to pray for that sign and the guidance she was seeking from her Lord. I knew, and maybe she knew too, decisions were being made about his fate, despite her hesitation. He was moving down his path, closer to home and we could not stop him; he was still on BiPap, with shallow rapid respirations–even more tachypnic than I wanted. I wanted to increase his morphine, to make him more comfortable; yet, I knew the family was hesitant because they wanted to try these “last attempts” as they waited for their miracle.
I leaned near to examine him with his BiPap in place, noisily forcing air into a chest cavity constricted with disease; it was loud and distracting. I whispered in his ear, “Good afternoon, Reverend. It's Dr. Nation. Open your eyes for me.” And he did—weakly, but he did it. His eyes were just as dark and deep as I remembered; yet, they spoke to me differently that day. He was suffering. Tired, he struggled to keep his eyes open. As I rested my stethoscope onto his chest, I listened to the rattling and restriction. But my stethoscope with my open hand on his bare chest was just a ruse; I really didn't care how his heart or lungs sounded; I needed to touch him, to speak to him without words. Silently, I recited to him a favorite Psalm, 116:7: “Be at rest once more, O my soul, for the Lord has been good to you.” I lifted my hand and in a language other than spoken words I said to the Reverend, “Go Home; you have served many and done much good. Your job here is done.” I quietly exited the room and left him with his family at his bedside, our private conversation safe.
Their struggle continued in the following days. The disease progressed, he weakened, and the machine labored more and more. The team struggled to see him suffer; yet, we had to respect their decision and remind ourselves daily to serve their needs and goals, not ours, comfortable with their decisions done on their own terms. Long after he is gone, they will live with the memories of his final days and moments. It is my job to ensure that they may find solace in their care and with the knowledge that we supported them.
And so, on my final day with the Reverend, I entered the room and found him just as I expected. He was unresponsive, lying there in an unfamiliar bed, attached to a tangled nest of wires and tubes, connected to monitors that only served to remind us that some organs were still working. The mask of the BiPap machine obstructed his face and diligently continued to force air into the little air space remaining within his tumor-laden lungs. I reviewed the most recent chest radiograph with the family, noted the lack of radiographic improvement and obvious clinical worsening (the same conversation for nearly every day for the preceding week; their position does not change). But I fulfilled my promise of honesty, informed them of the medical changes and their options. I desperately wanted to plead, “Let me help you walk him home. We are so close.” His wife walked with him as far as we can go; it was time to let go, but she couldn't. I could sense she was scared to admit that she may have been questioning her faith. Where was the miracle? I realized that in those final days with him she was more than just the wife of a preacher, she was his wife and partner, holding on to the love of her life for as long as possible. I'm sure she trusted where he was going, she just didn't want to be left without him. For my last time with them, I again quietly slipped out of the room and said to myself, “Thank you, Reverend, for the lessons shared; it was an honor to have been in the presence of such a great spirit.”
As physicians dealing with patients at their end of life, we commonly find ourselves struggling to balance helping a suffering patient and the patient's family both. In fact such struggles, as exemplified by this experience with the Reverend, create considerable angst amongst the palliative care physicians and those who serve in this capacity. We can only offer ourselves, our compassion, our wisdom; it is then up to the patient and/or family to accept it if they choose. They must find their own meaning in the suffering. I am reminded by Viktor Frankl's Man's Search for Meaning, “Emotion which is suffering ceases to be suffering as soon as we form a clear and precise picture of it.” And, “There is only one thing I dread: not to be worthy of my sufferings.” So what did I learn from the Reverend's suffering? First, that he died in a way I did not want him to die, but nonetheless, in a way that brought some sense of control and peace to his family. For this reason alone, his suffering had meaning. Secondly, his life and death served to teach me a lesson in humility and humanity. The physical restrictions of humanness leave us all vulnerable to the same diseases. Sometimes bad things happen to good people and it doesn't make any sense. So I learned to love, appreciate, and enjoy who I have, while I have them, and try not to worry about how long it is going to last.