In July 2016, a 15-year-old girl (patient X) came to Seattle Children’s Emergency Department to seek treatment for neurofibromatosis – a genetic disorder that causes tumors to form on nerve tissue.
Clinicians soon discovered she had malignant tumors in her head and neck. With resection and radiation therapy, she had a 50% chance of survival. Without treatment, doctors predicted she would die in three to four months.
The patient’s family asked doctors not to tell her she had cancer. “If you tell her, she will die,” they said.
The case raised a complicated ethical question: Do physicians have an obligation to talk to pediatric patients about their health or should they defer to the family?
The answer varies by case. Seattle Children’s experts and patient families offer the following advice to clinicians determining how much information they should divulge to patients.
Recognize That Yours Is a Minority Viewpoint
Western medicine today favors patient autonomy and full disclosure, but, historically, doctors often concealed information from their patients.
A 1927 issue of Harper’s Magazine describes the art of medicine as “skillfully mixing falsehood and truth.” In 1961, most physicians did not tell patients they had cancer because they believed the information would be too distressing. Views shifted by 1979, when 97% of physicians reported full disclosure of a cancer diagnosis.
Worldwide, opinions on medical disclosure are diverse. Many cultures believe medical information should be shared with the family, but not necessarily the patient. In Japan, for example, cancer has a negative social stigma and is often equated with death, so families decide what the patient should be told.
This viewpoint is not exclusive to non-Western cultures, says Dr. Doug Diekema, director of education in the Treuman Katz Center for Pediatric Bioethics. It comes up with families of all backgrounds.
Understand Their Point of View
Oncologist Dr. Abby Rosenberg has addressed information disclosure with many patient families and published a study review on the subject in 2016. She recommends clinicians ask patient families about their preferences around information sharing during their first meeting.
“I start with curiosity,” Rosenberg says. “I ask about their faith and values. I ask what cancer means to them. When we start to hit barriers, like, ‘I don’t want you to tell my child,’ I just keep asking questions and try to explore those hesitations.”
Let Parents Be the Protectors
Asking questions can reveal a family’s motivations for keeping the truth from a child, Diekema says. “It's never because they're being malicious or bad people. The parents are trying to protect their child. Sometimes they don't think their child would be able to handle the truth emotionally; in other cases they believe the truth would actually cause them physical harm.”
When Lisa Petke’s 6-year-old son, Torin, was diagnosed with a malignant brain tumor that threatened his life, she felt obligated to talk to him about his disease. But she kept one aspect of his treatment a secret.
“I waited until he was 9 years old to tell him he was most likely infertile,” Lisa says. “He had always talked about wanting to have kids, so I worried it would be a big blow to him. It was also nearly impossible for me to talk about it without falling apart. I did not want to burden him with my own grief.”
Allowing parents to feel they are protecting their children is crucial to their long-term well-being, Rosenberg says, especially when the child’s illness is terminal.
“The family has to survive the death of their child. They have to move on from this. They have to feel like they did the right thing.”
Share the Evidence Behind Truth-Telling
While it is important to understand families’ perspectives, providers should also share evidence in support of disclosure, Rosenberg says. “We need to be willing to gently and respectfully confront patient families with our concerns about withholding information from a patient.”
Research suggests when parents engage their children in these challenging conversations, they are better able to meet their child’s needs, alleviate their fears and protect them in unanticipated ways.
Even when parents don’t discuss a child’s prognosis, most children and adolescents understand they are seriously ill and/or their life is at risk.
“Kids who've had serious illnesses tend to understand the concepts of death and their mortality at a young age,” Rosenberg says. “It is frightening for them to feel like they cannot ask questions.”
With access to the internet, children can easily find information on their disease, which is often more frightening and less age-appropriate than if they learned about it from a loving family member, Diekema says.
“When you withhold the truth, you undermine trust,” Diekema says. “When the child figures it out, they feel like they cannot trust anybody, creating emotional distance and suspicion at a time when closeness and trust are most needed.”
Be Willing to Compromise
While there is a wealth of evidence in support of sharing information with patients, maintaining a strong partnership with the family is sometimes more important.
“Once somebody has clearly established their preference, it shows disrespect to keep pushing it,” Diekema says. “That may mean that we sometimes allow families to withhold information from their kids.”
Know When to Hold Your Ground
In complex situations, it can be helpful for clinicians to identify “hard lines” they are not willing to cross.
For Rosenberg, one of those lines is she will not lie to a patient. “I have said to families ‘If she asks me directly, I will not lie, so how do you want me to handle that?’ And we come up with a phrase I will say, such as, ‘That's a really good question. Can we bring your parents in and have a conversation about it?’"
Many clinicians, including those who treated patient X, agree they will not treat patients who are unaware of their diagnosis or prognosis.
Ask the Patient: What do you know? What do you want to know?
The information patients want, and how they want to learn it, varies by child. The best way to determine a patient’s preference is simply to ask them, and keep asking them as their disease progresses.
Suzy Matter, whose 17-year-old son Colton was diagnosed with acute lymphoblastic leukemia in 2009, says he did not want to know all of the possible effects of his treatments.
“Colton wore head phones during consultations,” says Matter. “He knew his diagnosis was life-threatening, but learning about everything that could go wrong made him anxious, so I followed his lead and only talked about treatment effects as they came up.”
Likewise, patient X was comfortable with her family filtering information for her and said she would tell her providers if that changed.
Clinicians should push a little harder if a patient asks for more information than their family is sharing with them, Diekema says. “Sometimes it is OK to put parents in the hot seat. If the child is saying, ‘I don't agree with my parents. I want to know,’ then we have an obligation to keep the conversation going with families.”