By Wendy S. Harpham, MD, FACP
Patients often experience distress during the transitions of survivorship. The first begins with the diagnosis, when daily life suddenly includes new demands on their time, energy, and emotions. Another begins when they confront post-treatment life. Whether a patient's cancer experience ultimately fades to a mere blip in the past or marks a major transition transecting life into "BC and AC" (before cancer and after cancer), an understanding of transitions advances compassionate cancer care.
Life Is in the Transitions: Mastering Change at Any Age offers clinicians a useful perspective, even though written for a popular audience. Bruce Feiler is an American writer who survived back-to-back traumas, including an adult-onset pediatric bone cancer. The first half of the book presents his understanding of life transitions—what they are and how people get through them. The second half comprises a toolkit for transitions.
His thesis is clinically relevant: The ability to reconstruct one's life story after a major event is vital to a fulfilling life. With every patient interaction, two stories are underway: the objective cancer story and the patient's interpretive life story. For the first, your clinical judgment and prescriptions map out the storyline while your patients' health-related decisions drive the plot. That co-authorship influences—not controls—the ending. Meanwhile, your patients are reconstructing their personal narratives to make sense of what's happening—a task that may benefit from your assistance.
At the heart of the book is Feiler's Life Story Project. He interviewed 225 select people about transitions related to a major health, career, relationship, or other life event. His team then coded 6,000 pages of transcribed stories for 57 variables, such as age, region, and whether the transition was voluntary or marked with a ritual such as throwing a party. Feiler searched for patterns that might yield insights about adapting to change, analogous to mining genomic databases for truths about treatments.
First, Feiler's conclusion: The idea of a linear life is dangerously outdated, handicapping people with unrealistic expectations and deficient life skills. Bar graphs present data that support normalizing major life disruptions. Subjects averaged 3-5 major life events, with the average transition lasting 4-5 years. Those findings, without minimizing the impact of a patient's illness, may help some patients see their challenges as less extraordinary. For others, it understandably won't resonate because life-threatening disease is fundamentally different than job loss or divorce.
Either way, the existential idea of a non-linear life remains useful in survivorship. Consider patients who feel their life is "off-track" or "on hold." The perception of loss of "what should have been" naturally leads to grief, powerlessness, self-pity, or other painful emotions. To avoid that suffering, patients can dismiss the idea of a linear life and replace it with…well, what?
To find out, Feiler invited his subjects to assign a 2D or 3D shape or image to their life path. After rolling my eyes, the book's next phrase tickled me: "seem[s] like a party game with little point." Yep, it did. Imagine my surprise later that day when I involuntarily tried to envision the shape of my own survivorship and felt energized. That exercise puts patients back in the driver's seat, where they feel empowered to make progress on their life path—just in an unexpected direction. Put another way, it encourages them to take charge as the author of their life.
Patients' stories matter when they affect decision-making or quality of life. Patients' comments may offer clues to their story in progress, such as referring to their cancer as bad luck, punishment, a wake-up call, a gift, or a meaningless biological event. A story suggesting powerlessness or victimhood may indicate the need for counseling. One of misplaced blame or inappropriate pessimism may indicate confusion over medical facts.
A few sentences can help guide patients toward more-healing stories. Your calling their current circumstances "a transition" may stir hope because transitions are temporary. Your mentioning that "transitions are trying and last longer than many people expect" may help them manage their expectations.
For more personalized guidance and support, consider Feiler's three phases of transitions. Is your patient struggling with 1) the long goodbye, 2) the messy middle, and/or 3) the new beginning? Different people get stuck in different phases.
Saying goodbye to the "old normal" causes the pain of loss. Clinicians are in a powerful position to validate patients' losses—whether of hair, body function, meaningful role, or confidence in the future—and to encourage patients to take advantage of support services (see the Patient Handout: Honoring Grief, Oncology Times 2014;36(16):38).
For patients who find the messy middle especially trying, it shows compassion to recognize that moving beyond the old normal means "enter[ing] a maelstrom that often seems chaotic and out of control." As one of Feiler's subjects put it, "I get that the chrysalis is important for making a butterfly, but it's no fun for the caterpillar."
As for creating a new normal during transitions, making sense of life and finding some good in the bad can be hard work. My doctors' and nurses' interest in my early writings and survivorship work meant the world to me. Your patient's t-shirt dissing cancer or celebrating survivorship opens the door to your asking about their story.
Some patients offer few clues. If the timing feels right, you can try introducing the ideas of positive change and post-traumatic growth. Maybe share a story of patients forced to make similar changes who discovered new ways to do things that were better for them than before.
Life Is in the Transitions is provocative and useful, even though some of Feiler's labels and explanations go too far for my taste. The kinds of conclusions you can draw from self-reports of a small select group are different from those drawn from big-data studies of genomic markers and measurable outcomes. That said, this engaging book offers both clinicians and patients practical insights and tips for navigating the transitions of cancer survivorship.