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Many patients with malignant gliomas face barriers to timely hospice enrollment
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Nearly 40% of patients with malignant gliomas do not enroll in hospice services, according to study findings.
Further, patients who enroll often do so within 1 week of death, by which point it likely is too late for them or their family members to derive benefit. ASCO recommends at least 3 days — and preferably 7 or more days — of hospice care as a measure of high-quality cancer care.
“Malignant gliomas are associated with particularly dismal survival and rapid physical decline,” Deborah A. Forst, MD, neurologist in the department of neuro-oncology at Massachusetts General Hospital Cancer Center and instructor of neurology at Harvard Medical School, said in a press release. “We believe that quality end-of-life care is of paramount importance for this particular group of patients.”
Forst and colleagues assessed the rates and correlates of hospice enrollment and hospice duration for patients with glioma. They used the SEER-Medicare linked database to pool data from 12,437 patients with malignant gliomas who received treatment and died between 2002 and 2012.
Overall, 7,849 patients (63.1%) enrolled in hospice services before their death (mean length of hospice stay, 21 days) and 4,588 patients did not.
Twenty-three percent of patients enrolled in hospice services less than 1 week before their death, and 11% enrolled less than 3 days before death.
HemOnc Today spoke with Forst about the research team’s findings and what members of the clinical community must do to ensure patients with malignant glioma receive earlier hospice referrals.
Question: What prompted this research?
Answer: The benefits of early palliative care and timely referral to hospice services for patients with advanced cancer and their families are increasingly recognized. Despite the poor prognosis associated with malignant gliomas, we know rates of hospitalization — and the clinical and sociodemographic features associated with hospice use — had not been well described. We sought to describe hospice use in this patient population and investigate the barriers to hospice referral.
Q: How did you conduct the study?
A: We performed a large, retrospective database study to address our clinical questions. We identified more than 12,000 eligible patients captured in the SEER-Medicare linked database, which includes information from cancer registries across the country and is linked to information about patients enrolled in Medicare. We then evaluated the rates of hospice use in this population.
Q: What did you find?
A: More than one-third of patients with malignant gliomas never enrolled in hospice. Of those who did receive hospice services, most (77%) enrolled within 1 week of death. In other words, almost one in four patients with malignant gliomas who received hospice services prior to death are not enrolled in hospice until the last week of their lives. We also found important differences regarding which patients received hospice care. Of note, male patients, nonwhite patients, younger patients and those who reside in rural areas appeared significantly less likely to receive hospice care. These sociodemographic differences suggest disparities in care remain and need to be addressed.
Q: How does the hospice enrollment rate for patients with malignant glioma compare to that for patients with other malignancies?
A: Nearly two-thirds of our patient population enrolled in hospice before death. This rate is similar to rates of hospice use in other types of cancer but is fairly low considering this is a terminal diagnosis. It is not clear why we do not see higher rates of hospice use in this population, but it is likely related to a combination of factors, including limited communication about prognosis between patients and clinicians, inaccurate prognostic assessment by clinicians, and an overall reticence of patients, families and their treating teams to transition from active anticancer-directed treatments to care that is focused on palliation and quality of life.
Q: Why is late enrollment in hospice so common?
A: The reasons for late hospice referral are likely similar to the reasons patients do not get referred to hospice at all. We suspect this is partly due to clinicians’ limited ability to prognosticate accurately, incomplete understanding of prognosis by patients and their families, and the desire for patients and clinicians to continue to pursue what they perceive as life-extending treatment, even in the setting of a terminal diagnosis. We recognize there are many challenges in determination of the appropriate timing for transition to hospice.
Q: What benefits do timely hospice care provide patients and their caregivers?
A: There is an abundance of literature on the benefits of timely hospice referral. We know patients enrolled in hospice at an adequate interval prior to death are less likely to be subjected to unnecessary or ineffective treatment, and they are less likely to have unwanted or inappropriate emergency room visits or ICU stays at the end of life. In addition, family members of patients who die on hospice are more likely to report greater satisfaction with their loved one’s care at the end of life and have better psychological outcomes than families of patients not enrolled in hospice. If one is enrolled late, a very short stay on hospice may compromise the ability of patients and families to receive important benefits.
Q: What do members of the clinical community need to do to effect change and ensure that these patients receive earlier hospice referrals?
A: Clinicians who care for patients with malignant brain tumors need to work together to improve end-of-life care for these patients. The first step is for us to recognize that the rates of hospice enrollment and length of stay on hospice are not optimal for patients with this type of aggressive and terminal disease. Also, late hospice enrollment may limit the benefit that patients and families receive. Further investigation into the barriers of timely hospice enrollment is warranted so we can determine how to best overcome those barriers. – by Jennifer Southall
Reference:
Forst DA, et al. Neuro Oncol. 2017;doi:10.1093/neuonc/nox196.
For more information:
Deborah A. Forst, MD, can be reached at Massachusetts General Hospital, 55 Fruit St., Boston, MA 02114; email: dforst@partners.org.
Disclosure: Forst reports no relevant financial disclosures.