May 21, 2002
Care for child with terminal cancer strains family finances
Caring for a child who is dying of cancer creates significant economic as well as emotional burdens for families, according to a study led by Dana-Farber Cancer Institute researchers. The study found that, in some cases, parents lost thousands of dollars of income and relied on charity to help meet expenses.
In a report presented at the annual meeting of the American Society of Clinical Oncology in Orlando on May 21, the researchers said that 58 percent of 103 parents queried said they endured moderate to great economic hardship as a result of their child's terminal illness.
Because they needed to help care for their child, 85 percent of the parents reported losing a median annual income of $10,000 to $20,000. Five percent of families said they sold property to pay for their child's care, and more than half of the families benefited from fund-raising efforts, which garnered up to $73,000 in the study.
Joanne Wolfe, MD, MPH
"There is a growing awareness across the country that families facing the loss of their child need support in many ways, including support for the financial strain," said Joanne Wolfe, MD, MPH, a pediatric oncologist at Dana-Farber and senior author of the report.
John A. Heath, MD, PhD, the study's lead author, said that the financial problems did not appear to color the family's experience: that is, parents did not feel that their child suffered any more or that the end-of-life process itself was affected. However, the study did find that parents who reported more financial pressure also were less satisfied with their primary cancer specialist, a connection the researchers said they can't immediately explain.
The study participants were families whose children were treated at Dana-Farber and Children's Hospital Boston or Children's Hospital and Clinics in St. Paul and Minneapolis, Minn. They were interviewed an average of three years after their child had died of cancer.
In the Boston group, the median range of reported household income was $25,000 to $49,000 annually. Thirty-five percent of the families said that insurance limitations sometimes interfered with the best medical care for their child, and 10 percent said they exceeded the cap on their insurance policies.
Nearly all (85 percent) of parents said they had to reduce their work hours because of the need to help care for their children. Heath noted that this impact of illness is probably higher in the case of a child compared to an adult, because a child would be seen as needing more constant care.
Dana-Farber Cancer Institute (www.dana-farber.org) is a principal teaching affiliate of the Harvard Medical School and is among the leading cancer research and care centers in the United States. It is a founding member of the Dana-Farber/Harvard Cancer Center (DF/HCC), designated comprehensive cancer center by the National Cancer Institute.
