Fernweh: Understanding Cancer Patients’ Longing for What They Will Miss

DISCUSSION

One communication challenge we may encounter with our patients, regardless of the stage or progression of their disease, is their whisper of longing for a future now out of reach. What happens to their fernweh?

Circumstances and logistics can delay a patient considering their loss of the future. They go from diagnosis to treatment planning, from new doctors to strange scans and tests. Their timeline is plotted out for them: 6 cycles of chemo, 10 weeks of radiotherapy, surgery next week. They become the proverbial deer in headlights. There is no time to think, yet there is no stopping the thoughts. This is fernweh, missing the future, the feeling of where they belonged. Grief, sadness, and depression may all be present. In an effort to help, we may try to “jolly them out of it” or we may ignore it entirely, continuing to provide care as if we never heard what they said. I’m not suggesting we would blatantly ignore a patient, but rather we may fail to ask for clarification when the patient makes a statement that leaves us uncomfortable.

So, what can we do in this situation? The simplest answer is to stay simple. By that I mean not trying to over explain, not working to find the silver lining. Acknowledging their reality is okay. When Joe said he was screwed — a euphemism for the word he actually used — the room went quiet. He had said the most profoundly true statement, and everyone was uncomfortable. His sister told him, said in love yet with obvious discomfort, not to say that. But by doing so she invalidated him.

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A dozen quick responses raced through my mind as I tried to decide if I should correct the sister, or try to soften the harsh reality he had defined. I settled on the simple truth. “You’re right. You’re screwed.” His sister drew in an uncomfortable breath but listened as I continued. “But you do have some choices. They will not change the final outcome. You will die from your cancer. But you can choose to do more chemo, or you can choose not to. You can choose how and where you want to spend the time you have.” I wasn’t sure if I was right to affirm what he’d said. Because of how crass and adamant he’d been in his declaration, it made me feel like agreeing with him was embracing his darkness. He shook his head and pointed at me. I had a flicker of panic that by agreeing with him I had upset him. Instead he said, “Thank you. Thank you.” He was sad, feeling fernweh, longing for the place where he was meant to go.


Ann Brady is a symptom management care coordinator at a cancer center in Pasadena, California.