'Are We There Yet? How Much Longer?': Deciphering Patients' Persistent Questions
Sometimes we have to dig down to figure out what the person is really asking.
Picture this familiar scenario: I'm on a long drive with my children when one of them speaks up from the back seat, “Are we there yet?” Then a few minutes later, “Mom, how much longer?” I respond, “Not yet.” Then, “Another hour.” Five minutes later the same questions: “Are we there yet?” “How much longer?” I respond, “I already told you. About another hour.” This same question and answer goes on several times. Each time I patiently answer. Yet in the space of only a few minutes the questions are repeated: “Are we there yet?” “How much longer?”
I answer with factual information, I say we are not there yet but will be in approximately an hour. But is that really the question? It is framed as a question, but it isn't a question as much as it is a statement: I'm tired of this long drive. I want to get out of the car. I don't know how to fill the time. I'm bored. I can't see where we are going.
Sometimes we have to dig down to figure out what the person is really asking. One recent patient, Teresa, experienced a rapid disease progression. She had pancreatic cancer and was only half way through her first line of chemo drugs when she developed an infection and ended up in the hospital. In addition, she had liver involvement and became confused, which left her husband, Sam, to navigate an unchartered course without her input. He repetitively said, “If we could just get her to wake up and make sense long enough I could ask her what she wants.”
They already had the larger conversation; she wanted to be DNR. But, she also said she wanted to fight as long as there were treatment options available. Unfortunately, there were none because of how ill she was. Sam articulated that he understood they were caught between two bad places. He could see how quickly she was declining. “What is next?” he asked.
The answer included reviewing her current condition and outlining both possible scenarios: she would improve and be able to get chemo or she would continue to decline and go on hospice. Sam nodded, even asked about the likelihood of her improving, all of which were thoroughly answered by the medical oncologist. At the end of the explanation he asked again, “But what is next?” His question did not reflect the understanding he had articulated earlier. Her doctor promised if Teresa got stronger, she could get chemo but the oncologist also told Sam, “Looking at her, clinically I don't think that will happen.” A moment or two passed before he again asked, “What is next?” The doctor said, “Wait and see.” When we arrived to check in, he asked us the same question, “What is next?”