What do you say when a patient makes a statement about their treatment that you don’t agree with? We know what is coming next for our patients. How much do we tell them ahead of time and when?
Susie pointed to the bag of chemo infusing next to her. “Only two more cycles.” She clapped her hands together. “I’m throwing a huge party after this! You have to come and celebrate with me.” She pumped her fist into the air like an Olympic champion, “I can’t wait to get back to normal.” I smiled at her enthusiasm. From the first time I met her she impressed me with how positive and upbeat she was. She embraced every part of her treatment, shaving her head before her hair fell out, cheering on the other patients even when she herself felt lousy, asking when they were going to finish their chemo and bringing a funny card to those who completed their treatment before her. Excited and planning a party was certainly in character for her, yet I worried that by thinking and saying everything would magically go back to normal and be fine that she was setting herself up for a big let-down. But I did not want to rush to correct her idea. She had been a real trooper, and the last thing I wanted was to take that away from her. So I listened to her plans for her celebratory party without interrupting. She had two more cycles of chemo, enough time to discuss what was next. On that day, she needed to look forward without limits.
Most of the time when we, the health care team, discuss the end of treatment with patients we talk of a new normal, as a way of embracing change and to emphasize the importance of re-establishing a sense of normalcy. The NCCN guidelines on Distress Management indicate there are times in cancer care that are considered points of transition. It is at these points of transition that vulnerability increases. Many of the transition points are obvious: diagnosis, surgery, start of chemo, before a scan. But surprisingly, one of the critical points of transition is at the completion of treatment. Up until that point the focus is on treatment. On action. On staying hopeful. On fighting and killing the cancer rather than on what is next. The idea of what comes after the completion of treatment is frightening.
In an article about the pervasive anxiety of those living in New York post 9/11, the late historian and Pulitzer Prize winning journalist David Halberstam, a New Yorker himself, called that anxiety the constancy of vulnerability.1 As our patients stand outside of the medical oncology office having been told their treatment is complete, they are faced with a fundamental question. Where do I go from here? Where they were prior to diagnosis is no longer available to them. The sense of vulnerability at each point of transition can be overwhelming but especially as they complete treatment. The word complete is itself a misnomer. Complete implies there is nothing else necessary to be done. It seems a likely place to celebrate. When our patients finish treatment we cut them loose. A follow-up appointment is made, and then the patient is essentially shown the door. We know that as they step forward into the world after cancer that there are challenges ahead. Finding that new normal requires a bit of work. How do we help our patients traverse this transition when we are no longer seeing them?
The NCCN definition of distress is an experience of normal feelings of vulnerability. It is important to normalize distress at all points of transition. It is important to acknowledge its existence and to educate our patients as they approach each point of transition. Just as I held Susie’s hand before she heard the results from her latest scan, she needed hand holding as she stepped away from us.
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Do you routinely discuss points of transitions with your patients?
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How comfortable are you at discussing the end of treatment with your patients?
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