University of Kentucky, Lexington, United States (Winter 2011)
When we start down the road toward medical school and residency, the idealists among us have a picture of the kind of physicians they will become. Our perception of the future rarely coincides with the reality that we often face. Ideally, principles that conflict with our own view of the world don’t prevent us from making the diagnosis and treating the patient. In the minds of the young and inexperienced, Dx progresses to Rx as surely as day turns into night.
In reality, our days are filled with difficult decisions relating to the treatment of patients, decisions in which our desires to treat and cure are thwarted by forces outside the sphere of physiology and anatomy. Sometimes these forces are spiritual in nature.
I faced a dilemma five years ago when a colleague asked me to speak with a patient who was hospitalized because of cancer that was metastatic to his spine. The patient’s oncologist had made an appropriate diagnosis and had consulted a neurosurgeon who specialized in complex spine problems. An MRI revealed a large tumor invading the thoracic spine. This patient was days from becoming paraplegic; initial attempts to treat the primary tumor, a renal cell carcinoma, had failed.
While hope for a complete cure was not realistic, the loss of bowel and bladder function, as well as the pain of further invasion of the spine, seemed a cruel way for this otherwise healthy young man to spend the last years of his life. My neurosurgical colleague had reviewed the information with him concerning the primary tumor, the likely outcomes for the future, and the very acute issue of profound damage to the spinal cord. The patient had listened intently the day before the proposed surgical procedure and agreed that spending his remaining time in pain and incontinent would be a torture best avoided. Despite a seemingly complete understanding of the consequences of delay, he, a devoutly religious man, deferred consent until he had time to speak with his pastor.
The next morning, as the surgical team made preoperative rounds on the patient, he revealed that after speaking with his pastor, he had decided not to have the surgery. He burst into tears, “My preacher says that this is God’s plan. We have prayed about this … God’s will be done.” The surgical team reviewed the inevitable events of the coming days—growing pain as the tumor invades the periosteum of the spine and total loss of the use of the lower half of his body. The tumor was complex, but diagnostic imaging revealed a window of opportunity to eradicate this problem. As the surgical team continued to review his course, he became less certain about his decision and asked for more time. His pastor was coming back that same day.
Later in the morning, as I discussed the patient with the neurosurgeons, I was struck by the alternative that this young man was considering. He had a wife and small children, he was otherwise healthy, and the surgical team was skilled. Certainly anything could happen any time, but in this case he seemed to be placing himself in a position that I believed he did not fully understand. I asked if I could speak with the patient.
In the South, where I have practiced all of my life, there are patients who believe that the God they pray to is retributive, and they do not have a right to intervene in the natural course of life. A patient with cancer has it for a reason; only God is privy to the cause. Appropriate medical care is not consistent with these traditional beliefs. Of course, the number of patients holding on to these beliefs is small, just large enough to remind us of the complexities of the practice of medicine.
My colleague, Debra, and I rode up to the 7th floor on the elevator. We entered the patient’s room to find him lying in bed, in obvious discomfort. His pastor was at his side. The surgeon introduced me to the patient and asked if we could speak to him in private about the mass in his spine and what he could expect. He was silent for a long moment. “My preacher wants to help me make the decision,” he responded. “Can he stay?”
Debra affirmed the pastor’s importance in the decision making process. I sat silently thinking about the patient’s afflictions: pain from the invasion of the tumor into the periosteum, neuralgia from the invasion of the nerves in the spine, and the spiritual pain of making a decision that could potentially separate him from his God.
She walked the patient through the process again, explaining what he could expect if he had the surgery versus what was almost a certainty if he did not. In a hushed and professional tone, she counseled him about possible complications, the need for blood transfusion, the likelihood of infection, and the possibility of death. She left it to me to discuss all things related to anesthesia: the risks of postoperative respiratory failure and the possibility of anaphylaxis to a drug. When we had both finished, a silence fell over the room. The pastor asked if we could pray together, and we all lowered our heads in unison.
The pastor prayed for the patient’s soul, for his strength of character, for courage to do what was right. He did not pray for skill and knowledge for the surgeon or the anesthesiologist. He did not pray for God to watch over the patient during the surgery, nor did he pray for the patient to be delivered from his excruciating pain. As the moments went on and the pastor spoke to his God, it was clear that my God, the kind, loving, and forgiving God, was very different from the deity he was calling up.
The pastor grabbed the patient’s hand. He gazed at him and spoke to us of the need for God’s will to be done, for nature to take its course. He lectured us about a greater plan and how our beliefs could reverse what God had given to this man. He talked about the dishonor that comes to those who fail to listen. He compared the patient’s plight to that of Jesus, asking the question, “What would have become of us if Jesus had not accepted what Jehovah had planned for him?” He ended by saying that the patient had made the decision to forgo surgery, even if it led to his death.
Somewhere there is a place where I can sit, listen, and agree with a line of reasoning that is different from my own. In some universe, parallel or not, there is a person named “Rae” who can let things go. However, in this universe, there is me. And I cannot be silent when another person, saying that they are acting in another’s best interest, is spouting words that can best be defined as the “party line.”
I was quiet for a full 15 seconds. During that moment I debated “lawyering up,” having the patient declared incompetent to make this decision. But I did not. I took a deep breath and began to speak slowly and deliberately:
“Pastor, I am having trouble recognizing the God you are describing. I talk to God too, and He gives me the strength to help patients and make them well. I think that He gives this doctor the ability to be an outstanding surgeon. He guides her hands as she delicately and skillfully removes tumors such as the one that is causing such pain to our friend here. The God that I know is not vindictive; the God that I know does not ask for sacrifices that are beyond our ability to understand. The God that I know recognizes that if the surgeon does not get the chance to operate, the pain and the loss of function that he will encounter as his spinal cord is transected by the tumor will be far greater than anything that he has yet suffered.
For you see Reverend, he will not die immediately, he will lie here in this hospital room for days upon days, weeks upon weeks with no ability to move, to clean himself, and maybe even to feed himself. The mass is so high in the cord that he will experience breathing difficulties and will develop pneumonia. I don’t think that my God would encourage that because it is a fate much worse than death.”
I paused and looked at the patient. “Is this really what you want?” Silence.
The patient lowered his head and hesitated, “I just don’t know. I don’t think I can take much more of this.”
The surgeon looked up and touched his hand with hers. There were tears in her eyes. In a whisper she said, “The decision is yours and yours alone. No one can make it for you and no one will second-guess you. Please let us help you.”
He looked at the pastor with tears streaming down his face. “Preacher,” he sobbed, “I can’t believe that God wants me to go on like this. I want to have the surgery.”
The pastor responded, “You must let God’s will be done.”
“His will is going to be done,” I interrupted, “and it is going to be done through her skilled hands.”
Silence. The pastor looked at each of us. Minutes passed. “I will be praying for all of you,” he responded. He stood for a moment, possibly waiting for the patient to change his mind. The patient looked down and continued to weep. The pastor turned and left.
In the quiet of that moment, I thought about the decision that this young man had made. I knew that his pain was balanced by the inner anguish of forsaking his God. Courage shows itself in many ways. That day we encountered the courage to speak for oneself, even if it meant questioning a guiding force in one’s life.
The young man signed his permit, came to the operating room, and underwent an excision of the invading mass followed by stabilization of his spine. He subsequently underwent a nephrectomy and removal of a small clear-cell tumor. After four years of chemotherapy and near complete return of cord function, he was struck down by the primary tumor. The pastor, recalling the courage that the young man had shown, spoke eloquently at his memorial service.
RAE BROWN, MD is a professor of pediatrics and anesthesiology at the University of Kentucky Medical Center in Lexington, Kentucky.