What’s the right way to talk about prognosis?

Childhood cancer can be difficult, even devastating, to talk about — even more so when a patient has a poor prognosis. However, during those hard conversations, communication skills become critically important. Conversations involving poor prognoses require equal measures of clarity, honesty and empathy. 

Best practices for when, where and how physicians should deliver this information vary by individual and may change over time. Those are some of the initial findings from the Revealing Information Genuinely and Honestly Across Time (RIGHTime) observational study. 

RIGHTime is a mixed-methods, shareholder-driven investigation of prognostic disclosure in advanced pediatric cancer. The study will be conducted in three phases. Led by Erica Kaye, MD, MPH, Director of Research for the Quality of Life and Palliative Care Division in the St. Jude Department of Oncology, the study explores prognostic communication preferences among patients, parents and oncologists. Kaye and the team recently published results from phase 1 of RIGHTime in JCO Oncology Practice, a journal of the American Society of Clinical Oncology.

Communication in the right time, right place

Kaye based the RIGHTime protocol on insights from an earlier research study called Understanding Communication in Healthcare to Achieve Trust (U-CHAT). By recording and analyzing conversations between pediatric oncologists and parents of children with cancer, the U-CHAT study aimed to better understand what communication approaches did and didn’t work during those difficult conversations.

“Our prior work has shown that parents of children with cancer often feel like they receive good communication about diagnosis and treatment, but they describe lower-quality communication around what cancer means for their child’s future life,” said Kaye. “This was a clear gap in our knowledge and an opportunity for us to move the needle and improve care.” 

The RIGHTime study was launched to fill that knowledge gap. In phase 1, trained facilitators conducted extensive interviews with pediatric patients, parents and oncologists about their beliefs and recommendations on talking about prognosis. The study team later analyzed those responses to better understand what patients and families really want when they receive difficult information about their illness. 

The findings, published in JCO Oncology Practice, focused on insights and recommendations from 20 patients, 20 parents and 20 oncologists from St. Jude and five other referring sites. When asked about timing, nearly all participants felt that doctors and patients should discuss prognosis at the time of diagnosis or as early in the illness experience as possible. Almost all participants thought such information should be delivered multiple times throughout the disease.

Most parents wanted to receive the news first so they could decide if or how to share prognostic information with the patient and other family members. Most patients said that they wanted, or might want, to be present for conversations about prognosis. Oncologist opinions were evenly divided on whether to include patients in the prognosis discussion, depending on myriad factors.

Decisions around patient inclusion are highly individualized and influenced by parental values, cultural backgrounds and patient age and maturity level.

“Anecdotally, we see this tension every single day, with many parents wishing to protect their child from difficult information,” Kaye said. “It is imperative for us to align with caregivers and family members as they strive to be good parents. We need to partner with them, understand where they’re coming from, and gently explore ways that we can also honor patients and what they wish to know.”

Opinions also differed on the amount of information to deliver. While most parents and almost half the patients wanted all prognostic information, few oncologists felt the same. “Really, everything is important. If it’s something that’s related to the prognosis of the patient, then the patient needs to hear it,” said one 24-year-old patient study participant.

This finding aligns with previous studies that show that parents of patients with cancer want honest information about prognosis. When oncologists attempt to soften the blow, it creates confusion. A study conducted at Dana-Farber Cancer Institute found that most (87%) of the parents surveyed wanted as much information as possible, even when they perceived the news as extremely or very upsetting.

Incorporating communication skills into clinical practice

Phase 1 of the RIGHTime observational study uncovered differences between what patients and parents want to hear about prognosis and what oncologists assume they want to know. Phase 2 of the study, which is ongoing, uses those findings to develop a conceptual roadmap and novel intervention, co-designed by patients, parents and oncologists to help support individualized communication about prognosis across the illness course. Phase 3, which is still in development, will study this new intervention’s feasibility, acceptability and preliminary impact over two years.

Based on the phase 1 study findings, Kaye encourages cancer care professionals to consider asking patients and parents how they prefer to hear information before discussing prognosis. “We do a lot of things well, but we could do better in preemptively understanding the prognostic communication preferences of patients and families and not inferring based on what we think they need, want or are ‘ready’ to know,” said Kaye. “The amazing patients and parents who participated in this study taught us many lessons, including the importance of oncologists partnering with psychosocial clinicians to elicit individualized prognostic communication preferences in advance so that we are empowered and best prepared to align our discussion about prognosis with their needs and preferences in real-time during those hard conversations.”

Delivering serious news to pediatric patients and their families requires advanced communication skills. Education and experience have shown Kaye that communication is a skill that can and should be taught. 

“Communication is a skill set that needs to be developed, practiced and taught in medicine,” she said. “All of us can and should take time to develop, practice and teach that skill set. It’s a powerful and essential aspect of holistic quality care.”