In the dimly lit hospital room, 15-year-old Adam paused his video games. He closed his eyes and told me about how it all started with a nosebleed that would not stop. Adam described his close friends and family back home and the puppy he loved dearly, all the while speaking as if he were reliving each memory he recounted. After an hour, our conversation drew to a close. Adam opened his eyes and told me candidly, “I don’t think that I have ever really spoken about my cancer this much.”
Our conversation was part of a larger project exploring how youth cope with cancer. While my questions about his experiences with cancer guided our conversation, I learned more about Adam as a person from the memories he shared, the words he stumbled over, the deep breaths he took, and the moments of silence. Admittedly, cancer was just one of many topics that came up in our conversation. “This is kind of out of it, but even though I still have all the cancer and stuff, I still have a job,” Adam told me. Through our tangents, he shared with me the simplicities and intimacies of his life, from his hobby of playing basketball to the fact that he was adopted. Adam wanted to talk about these parts of himself, and consequently, I wanted to hear about them.
When Adam confessed how different this experience of talking about his cancer was, it dawned on me that adolescents rarely have the space to share their experiences with cancer. While concurrently creating a sense of self and coping with a cancer diagnosis, adolescents may not have a chance to discover who they are outside of their diagnoses. “That’s what sometimes makes me mad or upset,” Adam explained to me. “That I got it, I got cancer at a crappy age.” Teenagers often long to belong, and sharing ordinary, everyday aspects of their lives may enable them to regain some sense of normalcy. No matter how brief or fleeting, such respite can be reviving.
No one is ever ready for such a diagnosis, but illness is often much further removed from the purview of youth. From my experience with Adam, I learned that, in caring for teens, it is essential to get to know who our young patients are outside of their illness. I found that fully engaging with Adam meant learning about him as a teenager rather than simply a cancer patient. Connecting with pediatric patients to better understand their perspectives can be challenging, especially when they may not be able to adequately express themselves in the ways that adults can, but it also can be all the more rewarding. Adam taught me the importance of cultivating these relationships by embracing my curiosity about others without hesitation, by inquiring about hobbies, and unearthing passions and values, regardless of whether they seem relevant to the clinical disease.
What excites me about caring for teens like Adam is their incredible diversity. Since each of them experiences a different developmental trajectory, contextualizing their unique experiences enables us to personalize our support. While Adam was most comfortable talking with me, some teens may prefer to write and others to draw to share their experiences with cancer. To understand how illness intervenes in each individual’s coming-of-age journey and identity formation, we must enter into their worlds. There is always more to learn about how each of our young patients copes with illness, and our responsibility is to accommodate the many ways that they express themselves.
Our conversation may not have helped the chemotherapy to destroy Adam’s cancer cells, but it did help Adam to make sense of his cancer within the grand scheme of his life. In the end, it was less important that I learned the personal details of Adam’s life and more important that he felt empowered to share them. Excellence in patient care is rooted in getting to know our patients as people—in learning the nuances of their personalities, the tiny details of their lives, the small things that matter most to them. It’s about making space for people like Adam, no matter how young or old, to share who they are. Care is more than something that we provide; it is an action that we do, by meeting our patients where they are and caring for them in their entirety. Only then, I believe, can we truly help our patients to heal.
Acknowledgments: The author would like to thank Adam—and all the other adolescents—for sharing part of his life. This piece is based on the author’s experience with the Chronicling Childhood Cancer project. For more about this project, a book of the same name is now available.
Trisha K. Paul