THERE IS A GOOD CHANCE that minority parents of children with cancer are given less information about their child’s condition while also being asked to shoulder a greater share of treatment decisions when compared to white parents of children with cancer, according to research discussed June 24 during an educational session at the American Association for Cancer Research (AACR) Virtual Annual Meeting II. (The AACR also publishes Cancer Today.)
“Providers were more likely to leave minority parents hanging when they were making these decisions,” said Jennifer W. Mack, a pediatric oncologist and outcomes researcher at Dana-Farber Cancer Institute and Boston Children’s Hospital, who reviewed research from three studies that analyzed ethnic and racial disparities in communication with parents who have children with cancer. “[Oncologists] gave them less support in decision-making. That, coupled with a lack of information that they provide about prognosis and other medical issues, creates concerns about the effectiveness and support of decision-making that these parents get.”
During the educational session, Mack reviewed her and colleagues’ research from the past four years. She described one 2017 study published in Cancer that examined surveys from 382 parents of children with cancer who were being treated at Dana‐Farber Cancer Institute/Boston Children’s Hospital and Children’s Hospital of Philadelphia, in addition to surveys from these patients’ treating oncologists. Parents were asked questions about their desire for treatment information and prognosis and their wishes for decision support, while oncologists were asked similar questions to determine if they could accurately predict parents’ desires.
In general, oncologists underestimated the needs of parents in all racial and ethnic groups, but this difference was more pronounced in nonwhite parents. Oncologists were more likely to consider Black and Hispanic parents less interested than white parents in the details of their child’s prognosis despite most parents expressing a high desire to have as much information as possible. In the study, 57% of physicians who were treating children of white parents reported that they believed parents wanted detailed information about prognosis. Just 25% of physicians believed that Black parents wanted this level of information, and 32% of physicians thought that Hispanics parents wanted these details.
According to the study, 81% of oncologists reported believing that white parents had a good understanding of medical information, compared with 44% of oncologists who reported that Black parents had a good understanding. In addition, 50% of oncologists noted Hispanic parents had a good understanding, and 63% of oncologists noted parents of Asian and other ethnicities, had a good understanding.
In further analysis of the same group of patients, published Jan. 2, 2019 in Cancer, parents expressed a strong desire to share decision-making with their oncologists together as a team, rather than having one party take the lead. However, 53% of oncologists accurately predicted white parents’ desires, while 23% of oncologists accurately predicted Black parents’ preferences for decision support. The research suggests that minority parents had less support for making treatment decisions than white parents. This lack of decision support was also associated with greater feelings of regret about treatment choices, Mack said.
“All of these issues together may contribute to more limited communication of prognostic information and other types of cancer communication than parents may wish for,” said Mack, who points to literature that finds physicians can take on a more paternalistic role when consulting with minority adult patients with cancer. This can leave patients disengaged in their own care. “The opposite is true here,” said Mack, noting that minority parents may be left to make their own decisions without as much information as they need.
In another study published in the April 30, 2020, Journal of Pain and Symptom Management, Mack and her colleagues administered surveys to 95 parents of children with advanced cancer from nine cancer centers to gauge whether these parents understood their children’s prognosis and the purpose of treatment. In the research, only one quarter of parents recognized their children’s very limited chances of cure. When broken down by race and ethnicity, 58% of white parents recognized that their child had less than a 25% chance of survival, compared to 8% of Black parents, 24% of Hispanic parents and 10% of Asian parents. None of the Black or Asian parents surveyed recognized that the current treatment their child was on was unlikely to provide a cure, compared to 57% of white parents.
In addition, 63% of the children of Black parents received medically intensive measures, compared to just 38% of the children of white parents. Compared to white children, Hispanic and Asian children were also more likely to receive medically intensive measures, including admissions to the intensive care unit, repeated hospital and ER visits, and mechanical ventilation. Still, when parents understood their child’s prognosis, children from all racial and ethnic groups were just as likely to receive medically intensive measures.
“This raises the question about whether more effective communication about prognosis with minority parents might change the kind of care that children would receive at end of life,” said Mack, who pointed out that limitations of the study included that it was small and that individual decisions about measures taken at the end of life may have cultural components.
Mack also presented findings from research that is currently under review for publication carried out at the University of Alabama at Birmingham, the University of California, San Diego, and the University of Iowa in Iowa City. In the study, researchers performed interviews with bereaved parents of adolescents and young adults who had cancer.
“Here we found that minority parents and minority caregivers in particular described a lack of direct information or direct communication. Instead, they often had to rely on intuition or inference to understand the patient’s situation,” said Mack, who described caregiver responses that suggested they felt alone in making their own decisions and lacked information regarding whether interventions would be helpful at the end of life. Some Black caregivers expressed that they might have chosen different treatments if a medical provider had told them more.
“Taken together, these findings raise the concern that minority parents may have less opportunity to make their best decisions for their children,” Mack said. To help address these disparities, Mack suggested oncologists take time to ask questions of parents, providing the following examples: Would it be helpful to hear about chances for a cure? How can I support you in thinking through this decision? Is there anything you would do differently next time [when thinking back to previous treatment decisions]?
After her presentation, Mack spoke with Cancer Today and encouraged parents to speak up about their needs—especially if they want an honest assessment of their child’s prognosis. “I would especially suggest asking, ‘What can you tell me about my child’s chances of cure?’ because we know that clinicians are often hesitant to provide this type of information,” she said.
“Sometimes parents assume that clinicians will provide them with any important information, so if the clinician doesn’t bring something up, it must not be that important. But I think our results suggest otherwise. … Parents should feel empowered to ask the questions that are on their minds so that they get the information they need,” Mack said.
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