Joe sat wheelchair-bound in the exam room, pale and gaunt with his nasal oxygen cannula hissing at high flow. He was a shell of the sturdy working man who I met less than a year ago, when he regularly accompanied his wife to her appointments. Having mostly ignored his own health caring for her and trying to earn a living, he became my patient only a month ago when I remarked on his haggard look, weight loss and chronic cough. Now he was following up post-hospitalization trying to come to terms with his stage IV lung cancer diagnosis.
I hardly knew Joe, but we had to have “the conversation”; time was running short for him and I needed to assess how well he understood his illness. What did he want for his short future? Why had it been, until recently, so agonizingly difficult to have a terminal illness conversation after so many years of practice? At first I rationalized that it conjured fear of my own mortality. Recently though, I realized that my fear stemmed from ignorance: I never gained the unique skills required to have this important discussion. In fact, I didn’t even realize there was a learnable skill set for this.
My colleague recently helped cast some revealing light, when he invited me to participate in a training session on serious illness communication. What we learned and practiced was a framework – not a script, but a series of patient centered questions to follow as a guide. “Is it OK if we talk about your cancer?” … “Tell me your understanding of where you stand with your illness?” …Let me tell you my understanding” …” “What are your goals?” What scares you?” Many clinicians feel under-trained for end-of-life conversations. The result is that we delay them, often until our patients are far too ill to engage in meaningful discussion about their wishes and values. Instead we are left with decisions about feeding tubes and CPR which sick patients and their families are emotionally unprepared for. Fortunately, interactive workshops like the one I attended are becoming more available, which are win-win for patients and clinicians alike.
Joe said he wanted, more than anything else, to get back to work. “That is what gives me a reason to get up in the morning,” he said, adding that he has always viewed himself as the provider and caretaker. He would be open to continued chemotherapy, as long as he felt he was getting stronger, no matter how slowly. If the treatment could no longer give him a realistic chance of working again, then he would want only comfort measures.
Understanding Joe’s wishes and priorities made it much easier to partner with and guide him through this illness. Future end of life conversations will bring their own unique challenges, but I feel much better prepared to facilitate the wishes of my patients and their families. The course of a patient’s illness should not limit my ability to help.