Many brain tumor patients do not receive adequate end-of-life care

While more than 60 percent of patients with the brain tumors called malignant gliomas enroll in hospice services, almost a quarter of them do so within a week of death, probably too late for patients and family members to benefit from hospice care. A study by research team from the Massachusetts General Hospital (MGH) Cancer Center also finds that certain groups are more likely than others to receive a week or less of hospice services.

"We know from prior research that patients with terminal illnesses, including incurable cancers, derive numerous benefits from hospice services," says Justin Jordan, MD, MPH, clinical director of the Pappas Center for Neuro-Oncology in the MGH Cancer Center, corresponding author of the report published in the journal Neuro-Oncology. "The magnitude of these benefits is notably reduced with late hospice referral. Even though timely hospice enrollment is an important measure of quality oncology care, we found that 37 percent of malignant glioma patients received no hospice at all prior to death."

Malignant gliomas include the aggressive and invariably fatal glioblastomas and other, slower growing but still incurable tumors. The average survival for glioblastoma patients is 15 months, and only 5 percent survive for as long as five years. Since no previous study has investigated either the proportion of glioma patients who enter hospice care or the length of time they receive hospice services, the MGH team analyzed information from a cancer database that included 12,437 patients with malignant gliomas who were treated and died from 2002 through 2012.

Of those patients, 7,849 were enrolled in hospice before their death, while 4,588 were not. The overall proportions of patients receiving hospice care remained fairly stable during the 10-year study period. While the average length of stay in hospice care was 21 days, 23 percent of patients enrolled less than a week before death, and 11 percent, less than three days. While race, education and household income were not associated with hospice length of stay, patients who were younger, male, and resided in rural areas were more likely to have a short hospice stay.

Lead author Deborah Forst, MD, of the Pappas Center explains that the American Society of Clinical Oncology recommends at least three days and preferably seven or more days of hospice care as a measure of high-quality cancer care. She says, "Malignant gliomas are associated with particularly dismal survival and rapid physical decline, so we believe that quality end-of-life care is of paramount importance for this particular group of patients. The fact that a significant proportion of patients with malignant gliomas enroll in hospice within the last week of their life probably limits the benefits that they and their families receive."

Jordan notes that, while their study highlights some important socioeconomic and demographic disparities in hospice utilization, it cannot identify the reasons behind the disparities. "Further research is needed to understand barriers to hospice enrollment for patients with malignant gliomas, with particular focus on the drivers of age-related, gender-related and geographic disparities in hospice utilization," he says.