'Concerning' Sociodemographic Disparities in End-of-Life Care for Kids

By Megan Brooks

April 11, 2019

NEW YORK (Reuters Health) - Neighborhood income and race/ethnicity are tied to the intensity of end-of-life care in U.S. children with complex chronic conditions, researchers report.

"These sociodemographic variations raise concerns about whether the 20,000 US children that die annually of disease-related causes are receiving quality end-of-life care that is consistent with patient and family goals," Dr. Emily Johnston of the University of Alabama at Birmingham and colleagues write in a paper online today in Pediatrics.

The researchers took a look back at the records of more than 8,600 children from California who died from a complex chronic condition, mainly neuromuscular (47%), malignancy (43%) and cardiovascular (42%) conditions.

Two-thirds of the children died in the hospital; 36% had a medically intense intervention in the last month of life, such as CPR, hemodialysis, intubation or ICU admission; and 35% had two or more "intensity markers" such as hospital death, invasive procedures and ICU admission.

Children from poor neighborhoods, minority children (Hispanic and "other" race and/or ethnicity) and adolescents were significantly more likely to die in the hospital and receive medically intense interventions such as chest compressions than their peers.

"What we do not know is how these disparities align with patient and family wishes," Dr. Johnston told Reuters Health by email. "However, it is difficult to imagine that children and families from poor neighborhoods have different end-of-life wishes and goals than those from richer neighborhoods."

"This raises the concern that systemic issues such as access to palliative care and/or hospice, how physicians approach conversations with different groups, and/or the stress of living in disadvantaged areas affects end-of-life care for these children," said Dr. Johnston. "Future research needs to determine how the disparities found in this study align with patient and family goals of care at end-of-life as well as how to improve end-of-life care for those facing disparities."

She added, "In order to ensure that all children have access to high quality end-of-life care, we need to ensure that every dying child have access to high quality pediatric palliative care and hospice care. That requires insurance coverage and legislation that support end-of-life conversations and reimbursement so agencies and hospitals can afford to provide pediatric appropriate services."

Dr. Johnston noted that a recent study of end-of-life care in children dying of cancer in France (http://bit.ly/2VwWBKx) also found that children from poor/disadvantaged areas had higher intensity end-of-life care despite France having universal healthcare, including a robust pediatric palliative-care initiative.

"Therefore, access to care, including palliative care, alone does not eliminate disparities in end-of-life care," she said. "There is growing literature about the financial toxicities of pediatric cancer treatment in the U.S. and how that financial toxicity affects symptom burden and outcomes. (Our) study and the France study show the importance of understanding how financial toxicity affects end-of-life outcomes."

SOURCE: https://bit.ly/2Gfj9uo

Pediatrics 2019.