The ASCO Post is pleased to reproduce installments of the Art of Oncology as published previously in the Journal of Clinical Oncology. These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays. To read more, visit jco.org and search “Art of Oncology.”
Katie A. Greenzang, MD, EdM
We received several pages in quick succession before we even saw the patient in the clinic. Audiology paged immediately after their visit to report that, Liza, a 6-year-old girl with high-risk neuroblastoma, had developed severe hearing loss after a single cycle of cisplatin-containing chemotherapy. The front desk paged to report Liza had checked in and her family was upset. The nurse paged to report the family had lots of questions.
At the outpatient visit the prior week, Liza’s father mentioned she did not seem to be hearing well, and a brief exam echoed that concern. A formal audiology evaluation confirmed what we suspected: Liza had cisplatin-related ototoxicity. As the patient sat playing on her iPad at a noticeably high volume, we talked with her stunned parents.
“We didn’t know this could happen,” they said, pausing. “Well, I guess we got a list of possible side effects at the beginning of treatment, and it said something about possibly affecting hearing, but it was so overwhelming…. And, well, we didn’t know it could happen so soon or after that cycle of chemotherapy.” The parents looked at one another and back to us, their gazes full of worry, sadness, and disbelief.
Balancing Adequate Information With Information Overload
A family who had seemed to understand the complexities of their daughter’s treatment and who had asked thoughtful questions throughout, they had already experienced many unwanted complications in the first few months of their child’s cancer treatment—intensive care unit stays, acute drug reactions, and prolonged fevers—but this felt different. The parents seemed truly taken by surprise. We thought their initial informed consent discussion and the father’s observation of poor hearing would have prepared them for this moment, but they seemed wholly unprepared for the possibility of permanent hearing loss that necessitated the hearing aids their daughter was tearfully and adamantly refusing.
In that moment, it felt like we had failed them. Yes, the initial discussion about treatment made mention of the possibility of cisplatin-associated hearing loss, but during the 2-hour conversation in which diagnosis and treatment were discussed, the typical acute adverse effects of chemotherapy, such as nausea, vomiting, fever, and neutropenia, took center stage. The time devoted to potential long-term and late effects—and ototoxicity specifically—could probably have been measured in seconds. We pride ourselves on conducting a thoughtful day-one conversation, replete with information about the cancer and its treatment, with pauses to check for understanding, but there is too much to get through and too much information for a parent to hear and absorb in a single session. Discussing a treatment plan for high-risk neuroblastoma, with its use of multiple treatment modalities, is particularly fraught as we try to balance adequate information with information overload.
Our discomfort with the origin of long-term adverse effects of treatment may also prevent us from being emotionally present for the additional and real losses they present to our families.— Katie A. Greenzang, MD, EdM
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There is little guidance on how and when to broach communication about the possible long-term effects of therapy. Many argue that a full discussion should wait until patients transition from active therapy to survivorship, as these issues are too overwhelming to hear about upfront and are often not relevant during the initial treatment period; however, not all long-lasting effects of treatment occur well after the completion of therapy. Furthermore, whereas the majority of initial discussions about treatment are devoted to the acute effects of therapy, such as nausea and neutropenia,1 studies show that parents want information about potential long-term toxicities of anticancer treatment upfront.2 Beyond the parental desire for information, parents need this information early on to provide truly informed consent that incorporates an understanding of the risks and benefits of treatment. Moreover, it may affect their treatment decisions if patients face a choice between treatments with different potential long-term effects of therapy.
So why do we not provide many details about the long-term adverse effects of therapy in initial treatment discussions? We spare some details initially, in part, because there is just too much to cover. Sharing a diagnosis and its associated prognosis, outlining the treatment plan, preparing families for the acute effects of treatment, and being present and supportive of a family’s psychological adjustment to this life-altering news leave little time for hypothetical future chronic toxicities.
Furthermore, we, as front-line oncologists, are not always involved in a patient’s care when she develops long-term health issues as a result of treatment. As many pediatric patients develop late effects in survivorship care and adulthood, the long-term effects of treatment may feel removed from the day-one conversation and slightly less salient. I have noticed myself doing it—mentioning a potential long-term adverse effect of therapy and immediately downplaying it. I have emphasized the rarity of secondary malignancies or said something to the effect of, “We’ll cross that bridge when we come to it.” I also wonder if we are uncomfortable with the responsibility we feel for long-term effects that are directly related to treatment we recommend and administer.
To absolve ourselves of this guilt, I sometimes hear oncologists thinking of them as trade-offs. As one colleague said offhandedly, “Well, it’s die of neuroblastoma or wear hearing aids.” Although I’m nearly certain the family would choose the same compromise, this simplification fails to acknowledge the loss of having yet another part of their previously healthy girl taken away by cancer and the feelings of guilt that a treatment we knowingly administered and to which they consented resulted in a permanent limitation.
‘One Conversation Is Not Enough’
What could we have done better in this case? Research in prognostic communication has demonstrated that exposure to more elements of prognostic disclosure, such as written and/or numerical information, and that providing information without waiting to be asked are associated with greater parental hope, regardless of a child’s prognosis, and with less parental decisional regret.3,4 Might these same principles apply to discussions about potential chronic toxicities of treatment and to the preparation of parents for the risks of possible long-term outcomes?
Perhaps we should reorganize our informed consent documents to synthesize information about potential long-term toxicities, instead of listing them individually by chemotherapeutic agent. I know consent forms are already long enough, but if long-term adverse effects are listed in one section of the consent form, we are more likely to discuss them, families will have a concise written reference, and it sends a message that long-term adverse effects matter.
One conversation is not enough. We asked Liza’s family, “How could we have prepared you for this?” Her parents paused and both agreed—they wanted a mini-refresher course before each cycle of chemotherapy and each phase of treatment. They wanted to be reminded of the specific drugs and their potential toxicities and desired an opportunity to discuss the logistics of the durations of infusions and days in the hospital. The chance to hear the information again in a new context and after a period of experience and reflection is critical to understanding and learning. This also mirrors what we know about prognostic disclosure in pediatric oncology, as studies have shown that parents prefer to have repeated discussions about prognosis over the first year of their child’s cancer treatment.5
Although it may seem nearly impossible to carve out time in a busy oncology practice to discuss each cycle anew, these discussions need not be long, nor are they exclusively the purview of the treating oncologist. Just as revisiting information is important, so is hearing it from a different perspective, such as from an infusion nurse, nurse practitioner, or oncology fellow.
Liza’s parents also mentioned they did not know when to ask bigger-picture questions. They felt that clinic visits were often devoted to the immediate medical issues of laboratory results and addressing acute symptoms. Meanwhile, during Liza’s inpatient stays, they wondered that when a member of the primary oncology team “stopped by to say hi” if there was only time for a quick hello or if that was a good time to ask about what lay ahead in the next cycle or after treatment completion. We need to create time and space to talk about these issues again, because they are hard to hear in the overwhelming upfront discussion. Perhaps this can be done, in part, by asking a family what else they hope for or worry about6 and by being prepared to talk about possible long-term treatment-related toxicities.
Being Emotionally Present
Our discomfort with the origin of long-term adverse effects of treatment may also prevent us from being emotionally present for the additional and real losses they present to our families. We must honor these potential losses, recognize the challenges they present, and bear witness to the emotions raised by discussions of long-term toxicities. Some children may not be able to have children of their own; others may never hear joyful peals of laughter or ever feel the exhilaration of participating in their parent’s favorite sport. Rather than minimizing potential long-term adverse effects to assuage our own discomfort, we must empathize with our patients’ families’ possible losses.
As survival for children with cancer continues to improve, optimally communicating the long-term implications of treatment becomes more important. This information is critical to shared decision-making, preparing families for the future, providing emotional support, and ensuring truly informed consent. As Liza’s family taught me, stopping by to say hi may not meet every family’s information needs. Instead, we must make time for discussions about long-term adverse effects upfront and repeatedly during the course of treatment. We cannot gloss over these issues, as our patients and their families will be living with these toxicities for years to come. ■
At the time this article was published in the Journal of Clinical Oncology, Dr. Greenzang was Instructor in Pediatrics at Harvard Medical School and a member of the Childhood Solid Tumor Center Treatment Team for Pediatric Hematology/Oncology at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, Boston.
1. Ramirez LY, Huestis SE, Yap TY, et al: Potential chemotherapy side effects: What do oncologists tell parents? Pediatr Blood Cancer 52:497-502, 2009.
2. Kessel RM, Roth M, Moody K, et al: Day one talk: Parent preferences when learning that their child has cancer. Support Care Cancer 21:2977-2982, 2013.
3. Mack JW, Wolfe J, Cook EF, et al: Hope and prognostic disclosure. J Clin Oncol 25:5636-5642, 2007.
4. Mack JW, Cronin AM, Kang TI: Decisional regret among parents of children with cancer. J Clin Oncol 34:4023-4029, 2016.
5. Sisk BA, Kang TI, Mack JW: Prognostic disclosures over time: Parental preferences and physician practices. Cancer 123:4031-4038, 2017.
6. Rosenberg AR, Feudtner C: What else are you hoping for? Fostering hope in paediatric serious illness. Acta Paediatr 105:1004-1005, 2016.