Race and Medicine

Race and Medicine

Disclosures: Johnston reports no relevant financial disclosures. Please see the study for all other authors’ relevant financial disclosures.
June 22, 2022
3 min read

Study reveals disparities in end-of-life care for children with cancer

Disclosures: Johnston reports no relevant financial disclosures. Please see the study for all other authors’ relevant financial disclosures.
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Emily E. Johnston, MD, MS, prides herself on being there for her pediatric oncology patients at every step of their cancer journeys.

However, she doesn’t believe that socioeconomic factors should dictate where those journeys end.

Quote from Emily E. Johnston, MD, MS.

“One of the reasons I love pediatric oncology is that, as a clinician, I get to see families through so much, from diagnosis to treatment and including end-of-life care,” Johnston, assistant professor in the division of hematology/oncology, department of pediatrics at Heersink School of Medicine at The University of Alabama at Birmingham, said in an interview with Healio. “Particularly, I’ve worked to improve the systems so that children, regardless of their location, can have high-quality end-of-life care. That got me thinking about disparities.”

Study methodology

Johnston and colleagues used MarketScan, a nationally representative data set of Medicaid and commercial claims, to examine end-of-life care patterns among 1,492 children with cancer who died between 2011 and 2017. Among these patients, 44% had Medicaid and 56% had commercial insurance. Seventy-one percent had been diagnosed with a solid tumor, and 37% were aged 15 to 21 years at the time of death.

The researchers assessed the rates of home death, hospice use and medically intense treatments in the past 30 days.

Key findings

Results, published in Pediatric Blood & Cancer, showed 40% of patients died at home. Compared with children with commercial insurance, children with Medicaid had a lower likelihood of dying at home (relative risk [RR] = 0.82; 95% CI, 0.73-0.92). Forty-five percent of children had been enrolled in hospice for a median 2 days. Although rates of hospice enrollment did not differ by insurance, children with Medicaid spent less time enrolled (incidence rate ratio = 0.22; 95% CI, 0.17-0.27).

In another notable finding, Johnston and colleagues reported that among Medicaid recipients, Black children had a lower likelihood of dying at home (RR = 0.69; 95% CI, 0.52-0.92) or enrolling in hospice (RR= 0.71;95% CI, 0.55-0.91) than non-Hispanic white children. The need for medically intense interventions did not differ by insurance status or race.

“This study highlights patterns and disparities in care that we need to dig deeper into,” Johnston said.

Unanswered questions

Johnston said although the reasons for the disparities in the rates of deaths at home are not fully understood, several factors may explain these disparities.

“Is this because families on Medicaid have different desires for end-of-life care, or is it because of provider biases and disparities in the approach to initiating end-of life conversations based on insurance?” Johnston said. “Are there other issues with hospice access, particularly access to high-quality hospice care? Or perhaps it is related to the cost of informal caregiving. The costs of family members taking time off work and the resources it takes for care at home are tremendous.”

Johnston noted that although children on Medicaid spent less time enrolled in hospice than children with private insurance, both groups had a low duration of hospice care.

“We recently developed quality measures for end-of-life care for kids with cancer that recommend children with cancer be enrolled in hospice for at least 5 days, if they did enroll in hospice,” Johnston said. “If they want to be home to die, we want them to experience care in that environment, get used to their hospice nurses, and develop relationships — and that takes time. Both groups had hospice enrollment shorter than the quality measure would call for.”

Relevance of race

Johnston, who had previously conducted interviews with families of children in California who died of cancer, said her current study and previous research showed racial disparities in end-of-life care.

“In California, we worked hard on sampling to understand the disparities between Hispanic vs. non-Hispanic white families,” she said. “We have done similar interviews here in Alabama, sampling for Black and white families. So, we’re really trying to dig into the question of whether children from Black families are less likely to die at home or enroll in hospice because that is the family’s preference, or whether there are other factors playing a role. There do seem to be patterns of racial and ethnic end-of-life care that persist across studies.”

Johnston said she intends to gather more data on these disparities to better inform the quality measures she helped develop.

“I want to be able to collect more robust information about the current quality of end-of-life care for children with cancer,” she said. “Parents informed our quality measures for the care of these children and an expert panel endorsed them. So, we want to look at disparities in those specific measures that are important to parents and to stakeholders in the field.”

For more information:

Emily E. Johnston, MD, MS, can be reached at UAB Heersink School of Medicine, 1670 University Blvd., Birmingham, AL 35233; email: eejohnston@uabmc.edu.