How do you respond to a patient who tells you not to discuss their prognosis?
Do you ever go back to a patient to revise a previous interaction, ask for a conversational “do over”?
Cynthia held her hand up in a way that made me think of the popular gesture and saying kids have: “Talk to the hand.” She had stage IV lung cancer and was undergoing radiation therapy for metastases to her pelvis. She had made it clear to all of her caregivers that she did not want anyone to “beat me over the head with a prognosis when it won’t change anything.”
Those of us involved in her care abided by her request, and instead, we focused on her treatment and the things she would let us help her with. Her bone metastases were painful and required nearly daily adjustments to her med regimen. Managing her significant pain was challenged by her reluctance to take too much pain medication. My educational strategy focused on her Functional Pain Goal (FPG), since it was a rationale that made sense to her. Each day when I saw her, I asked the same question about her pain, “Better, worse, or the same?” And I continued my assessment from there. As I gained her trust, she began to take effective doses of pain medication. Even with her symptoms well controlled, she maintained her stance of not discussing her prognosis.
One day, after a difficult night with increased pain and little sleep, I asked about her pain: “better, worse, or the same?” Rather than answering my question, she abruptly asked one of her own. “Am I dying?” This is a question that can stop any of us in our tracks, but it was especially so with Cynthia. It was our implied agreement that our conversations would focus on her physical symptoms. She defined the boundaries, and I adhered to them. So, why was she asking me this when she had repeatedly told me not to discuss what was next?