Pediatric Patients and Parents Say They Want Straight Talk from Oncologists Even When the Prognosis Is Poor

Pediatric oncologists must regularly have some of the hardest conversations in the medical profession with patients and parents: Will the child survive? For how long? Will treatment be painful?

Yet they infrequently ask patients and parents about their preferences for receiving information about prognoses before initiating difficult discussions. Indeed, studies have found a mismatch between what pediatric oncologists know about a child’s prognosis and what they communicate to patients and families at the bedside or in the office.

A qualitative study involving 85 participants — 25 patients, 40 parents and 20 oncologists — examined how much information the first two groups wanted to hear about poor prognoses and whether they wanted to discuss that decision with their doctor in advance, and how the oncologists felt about both.

Most members of the three groups strongly agreed that sharing more information is better, and patients and parents — and some oncologists — believed that discussing communication preferences in advance is important, according to study findings published April 16, 2025, in JAMA Network Open.

Caroline Christianson, M.D.

First author Caroline Christianson, M.D., a pediatric hematology and oncology fellow at NYU Langone Health in New York City, and colleagues at St. Jude Children’s Research Hospital in Memphis, Tennessee, where all the patients had spent some time, and other institutions around the U.S., recruited three groups of participants for single interviews: patients aged 12 to 25 diagnosed with cancer with an estimated survival of 50% or less; parents or caregivers of children who had cancer with a poor prognosis, as well as parents whose children had died six to 24 months before; and oncologists from six pediatric cancer programs in five states.

There were two sets of targeted interview prompts and probes for patients and parents: "Do you want to know information about prognosis? Why or why not?” and “Should a doctor ask you ahead of time about what information you want to hear?”

Interviewers were prompted to ask oncologists one basic question (with follow-ups): “Do you routinely ask patients or families what information they want to hear before sharing information about prognosis?”

Nearly all patients and parents wanted to hear information about prognosis.

• A patient aged 15 to 17 said: It helps me at least feel not just clueless on what’s happening.
• One of the few parents who did not want to know said: I don’t feel like I’m in a place that I can handle hearing something that’s going to put [cq]a negative thought process going.

Most parents and oncologists also advocated for disclosure of diagnosis even if not requested or desired by patients or parents. At least some patients agreed, with younger children less likely to say oncologists should share information even if they didn’t want to know

• An oncologist: I do tell them. I make it clear that this is the prognosis, even if they don’t ask. I think they need to know, then need to be prepared, and, frankly, for [cq] to start palliative care as early as possible.
• A patient aged 15 to 17 disagreed: No, because it could freak them out.

Most patients and parents also agreed that doctors should ask ahead of time about what information they wanted to hear (opinions were mixed among oncologists).

• A parent who said yes explained: That sounds like a good way to invite the truth in. … It prepares you for the magnitude of feelings you’re about to be hit with, so I think that could be helpful.
• A few parents were ambivalent or preferred not to discuss ahead of time what information should be shared. Said one: I don’t know. … It’s hard for them to tell me a prognosis on this because I hate to go up and say, “What’s the probability he’s going to survive?” That’s kind of a hard thing for a doctor to say, an unknown type of thing.

Patients, parents and oncologists also recommended some strategies for eliciting prognostic communication preferences.

• A patient aged 12 to 14 suggested asking questions: Saying something like, “How much information do you wanna hear about how the cancer affects your future?”
• An oncologist recommended giving options: I always ask them, like, is this enough information? Do you need less? Do you need more? Like, [cq] what else to try and make sure that I’m with them.
• A patient aged 12 to 14 said this about delivery and tone: No sugarcoat.

The authors wrote that their findings “demonstrate that patients and caregivers are open to discussing prognostic communication preferences and that oncologists also recognize the potential value in this communication approach, even as they rarely engage in it.”

They said they hope that their findings “may empower clinicians at the bedside to consider broaching conversations about prognostic communication preferences in advance of disease reevaluation discussions, recognizing that patients and families may welcome these conversations.”