Brain Tumors Patients Wait Too Late to Enroll in Hospice

Patients with incurable brain tumors, called malignant gliomas, could gain important benefits from early enrollment in comprehensive hospice programs, which provide valuable palliative care and caregiver support. But many of them wait too late to enroll, according to a study published in the October 2017 in the journal Neuro-Oncology.

The study’s investigators used the Surveillance, Epidemiology, and End Results (SEER) Medicare database, which includes more than 12,000 patients 18 or older who died following a lethal brain tumor diagnosis between January 1, 2002 and December 31, 2012.

In analyzing the data, they found that while 63 percent of these patients did enroll in hospice care, almost  a quarter of them enrolled within a week of death — too late to benefit from what it offered, including comfort care, symptom management, and emotional support for patients and their caregivers near the end of life. Thirty-seven percent of patients received no hospice care at all before dying.

Malignant gliomas include a type of brain tumor called glioblastoma, which is very aggressive. Typically, patients with this type of tumor live for a median of 15 months. Five-year survival is only 5 percent for this form of tumor. Three- and seven-day hospice lengths of stay match quality of care minimum guidelines established by the American Society of Clinical Oncology, which has begun tracking them.

The study is the first population-based study that specifically focused on both hospice enrollment and length of stay in patients with brain tumors.

Related: Cancer: What Does It Mean to Get Palliative Care?

Older White Women Most Likely to Enroll

Of those enrolled in hospice at all, the median length of stay was 21 days. The study showed older patients, women, a higher level of education, being white, and having a lower median household income were important predictors of who took advantage of hospice enrollment.

When the researchers looked at lengths of stay of three or seven days, older age, female sex, and urban residence proved key predictors of people who used hospice longer.

“Older age makes sense to some degree, as comorbidities [coexisting medical conditions] may preclude aggressive therapy,” says says Justin Jordan, MD, the study’s senior author and clinical director of the Pappas Center for Neuro-Oncology at Harvard’s Massachusetts General Hospital Cancer Center in Boston. “However, when one sees this list of differences, one wonders about differences in cancer-directed therapy, as well as end of life care in these populations.”

“We could and should strive to improve end of life care to make hospice services available to a larger proportion of the population,” says Dr. Jordan.

Patients Should Seek Out Palliative Care, Too

“My initial reaction is that 63 percent hospice enrollment, and 89 percent for more than three days, is actually very good news as these statistics point to greater use and long use by those with brain cancer than on average,” says Melissa D. Aldridge, PhD, associate professor and vice chair for research in the Brookdale Department of Geriatrics and Palliative Care Medicine at Icahn School of Medicine at Mount Sinai in New York City.

Nationally, and across all terminal illnesses, about 40 percent enroll in hospice and about 65 percent of those people are enrolled for longer than three days.

Dr. Aldridge also says that patients and families should not forget to explore palliative care, which is care given to prevent or treat the symptoms and side effects of an illness and the treatment that accompanies it. Palliative care is also sometimes referred to as comfort care, supportive care, or symptom management.

“Patients and families need to be aware that there are palliative care options outside of hospice that are available at the time of diagnosis of a serious illness like brain cancer,” she says. Patients, she advises, should ask for a palliative care consult and determine if a palliative care team exists at their hospital. Palliative care can also serve as a bridge to hospice at some point in the future. “In asking for this early on, patients and families would be a far better position to transition to hospice care when needed and wanted.”

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