The 13-year-old boy had complained of intermittent and worsening pain in his lower left leg over several months. Though he was an avid lacrosse player, he couldn’t recall any trauma that might have caused the pain. The initial X-ray at an outside ED showed no fractures or lesions, but continuing pain prompted repeat imaging and then a referral to Hopkins Children’s, where an MRI revealed a fibular lesion pointing to a possible bone cyst, infection or malignancy like Ewing’s Sarcoma. Now it was time to tell the patient that the diagnosis might be cancer, but how?
“The parents did not want the child to know that the differential diagnoses included a malignancy,” said pediatric resident Stephanie Chin-Sang at a recent case conference. “They thought he wouldn’t be able to handle it because he was too young.”
What can pediatricians do in such situations? How should they share bad news with both the parents and the patient?
Schedule a meeting with the parents as soon as a serious condition is recognized, said Hopkins Children’s pediatrician Janet Serwint, who conducts training programs on the subject. Find a private place where everyone can sit, and turn off the pagers and cells.
“Make it the kind of atmosphere where people feel you’re paying attention and spending the appropriate amount of time with them,” Serwint added.
Participants should include the physician most involved in the case, at least one other healthcare professional, both parents, or a supportive family member if the parent is single. Make sure you know the patient’s name and gender, and use a warning phrase as you begin to disclose the diagnosis.
“I typically say, ‘I’m very sorry to tell you that I have some difficult news to share with you,’” Serwint noted. “You want to get to the point quickly once you’ve given that warning phrase, as the parents are very eager to hear what you have to say.”
Once you disclose the diagnosis it’s important to pause, Serwint said, to allow the parents to take in the information. Studies show that many parents hear a buzzing sound after given a difficult diagnosis.
“That sound is us continuing to talk but they can’t really hear us because they’re so focused on what they were told initially,” Serwint said. “Give them time to absorb the information until they give you a sign or signal to continue.”
Bring any relevant test results or scans with you, but don’t force them on the parents. Some families find such data helpful, while others may have a visceral response. Be prepared, Serwint added, for parents’ emotions like anger, guilt or sadness, as well as your own feelings.
“Remain present and don’t dart out,” Serwint said. “Once they’ve acknowledged the information they may have more questions. Try to balance the truth with optimism.”
What do you say to parents trying to protect their child from the bad news? Serwint stresses that while parents have a right to express their thoughts about disclosure the patient has a right to know about a serious disease affecting his or her body. Serwint added that even if the child is not told, the literature shows he or she knows pretty well what’s going on.
“Not discussing it can lead to the child feeling quite isolated, and they don’t know who to talk to or trust,” Serwint said.
Ways to tell the patient include the healthcare team informing the parents and patient together, the parents disclose with the healthcare team present, or the parents disclose alone. If the parents are told first, inform the patient as soon as possible. Why is all of this important?
“The literature shows that parents and patients vividly remember the way diagnoses are disclosed, and appreciate kindness, compassion and honesty,” Serwint said. “The way information is presented influences the ability to hear the news and subsequently to adapt to it.”
Pediatric oncologist David Loeb echoed Serwint’s thoughts, stressing that it’s important that the parents and the patient have heard the word “cancer” before walking into his office.
“If the pediatrician or the ED doc thinks by not saying the word cancer they’re sparing the parents the possibility of thinking their kid might have cancer, they’re not,” Loeb said. “It’s perfectly reasonable to say there are a bunch of things this could be, and cancer is one of them.”
Loeb said physicians should avoid the use of euphemisms like “oncologic process” or “malignancy.” Be direct and use plain simple language.
“Once they’ve heard the bad thing they’ll want to know more, so spending five minutes trying to make it softer doesn’t help,” he said. “That will only make them more anxious about what’s going on.”
What is going on and the prognosis that follows the disclosure can be tricky to call when it comes to cancer, Loeb added. With Ewing’s Sarcoma the big determinant is whether the tumor is localized or has spread to the bone or lung. The paradigm of treatment is chemotherapy and/or radiation to shrink the tumor for resection, then a follow-up regimen of chemotherapy. With current treatments, Loeb added, Hopkins Children’s is curing around 75 percent of children with localized disease, and 20 percent of patients with metastatic disease.
Regarding parents’ feelings of guilt or anger about a possible delay in diagnosis, Loeb reassures them that any delay usually doesn’t influence the patient’s prognosis.
“Interestingly, the longer it takes to get from first symptoms to diagnosis, the better patients do,” he said. “The slow growing tumors that are less aggressive take longer to get to the point where you have a diagnosis. Because of the biology of those tumors those patients do better.”