Patients With Brain Tumors Face Late Hospice Enrollment and Utilization

Although the majority of patients with brain tumors enroll in hospice care, only a quarter of them do so in an adequate amount of time, which in turn, is likely too late to benefit from such care, according to a study published in Neuro-Oncology.

Adequate end-of-life care derives a variety of benefits for both patients and their families, including less invasive and ineffective intervention and less financial burden, said study author Justin Jordan, M.D., MPH, clinical director of the Pappas Center for Neuro-Oncology at Massachusetts General Hospital (MGH) Cancer Center.

“Hospice is a comprehensive care program offered to patients with terminal illness which provides personalized treatments focused on comfort, symptom management and emotional support for patients and families,”, Jordan said in an interview with CURE. “…Late enrollment in hospice may substantially reduce these benefits.”

High grade gliomas are typically incurable brain tumors with an unfavorable prognosis. However, little is known on hospice utilization in this patient population.

“While our field continues to make progress in understanding the molecular underpinnings of malignant brain tumors and its possible therapeutic targets, high grade gliomas remain one of the most challenging cancers to treat and are nearly universally fatal,” lead author Deborah Forst, M.D., of the Pappas Center at MGH Cancer Center, said in an interview with CURE. “While our team maintains a focus on hopeful and innovative treatments, and is actively involved in many clinical trials and laboratory efforts, we also believe that optimizing end-of-life support for our patients is of upmost importance.”

Therefore, researchers at MGH evaluated hospice utilization patterns among 12,437 patients with high grade gliomas using a Surveillance, Epidemiology, and End Results (SEER)-Medicare linked database.

Older age, female sex, higher level of education, white race and higher median household income by zip code predicted hospice enrollment in these patients.

“The relatively low hospice utilization rate in patients with a terminal diagnosis likely reflects a combination of limited prognostic accuracy among clinicians, poor communication about prognosis between patients and care teams, and an underlying perception that hospice enrollment equates to ‘giving up,’” Jordan said.

Among the 7,849 patients enrolled in hospice before death (63 percent), almost 7,000 were enrolled for more than three days (89 percent), and just over 6,000 were enrolled for more than seven days (77 percent). Similarly, older age, female sex and urban residency were predictors of patients staying in hospice for a three- to seven-day periods. Overall, patients enrolled in hospice stayed for an average of 21 days.

However, the researchers also found that 11 percent of patients received three days or less of hospice care, and 23 percent had less than seven days, “highlighting a tendency toward late hospice enrollment relative to end-of-life,” said Forst.

These results may warrant additional evaluations on the barriers to hospice enrollment, Forst added. “As a community, clinicians caring for patients with malignant brain tumors should strive to optimize end-of-life care practices, which can be done while still providing care consistent with the patient’s wishes and preserving hope.”

Jordan agreed, highlighting that while brain tumor specialists tend to focus on aggressive treatment to slow or stop tumor growth, it is also important to recognize the benefit patients may have if they do not undergo these intensive therapies.

“It is at that time that hospice enrollment should be pursued in order to gain maximal benefit from those services,” he added. “Recognizing the incurable nature of high grade gliomas, providers should have early, honest discussions with patients about their wishes and goals for therapy, and should empower patients to ask questions of their care team.”