Lack of Awareness — Even Among Staff — Can Hinder Access to Palliative Care for Cancer

Palliative care and supportive care services are an essential part of the treatment of cancer. Currently, all National Cancer Institute-designated, comprehensive cancer centers report having these services available to patients. However, there are barriers to the accessibility of them that some physicians may not even consider, according to the findings of a study presented at the American Society of Clinical Oncology (ASCO) 2016 Palliative Care in Oncology Symposium September 9-10 in San Francisco.

A group of Duke University and Duke Cancer Institute researchers presented a study which sought to determine how easy it would be for a new patient to access the palliative care system when they first contact a major cancer center.

Palliative care services, along with cancer education, multidisciplinary care teams, patient navigation, counseling/psychiatric care, genetic counseling and clinical trials, are required for Comission on Cancer (CoC)-accreditation, and all National Cancer Institute (NCI)-designated cancer centers state the availability of consultative palliative care services.

The study consisted of simulated calls to 40 NCI-designated cancer centers, using a “mystery shopper” format. The calls all followed a standardized script, involving a family member seeking palliative care for a 58-year-old woman with inoperable liver cancer. Researchers called each center four times on different days, twice with the caller reporting Medicaid insurance and twice with private insurance. Researchers then reported on the quantitative and qualitative components of the answers they received. Overall, 160 calls were made, 46 of which did not reach a person (29 percent).

Researchers found that 38.2 percent of callers were unable to receive complete information about supportive care services. Additionally, only 37.6 percent of callers were told all seven supportive care services were offered. In 9.5 percent of the calls, the call recipient could not confirm whether palliative care services were offered at the cancer center. While specific responses varied when researchers asked if palliative care was available, the authors wrote, “10 call recipients told us that they were unsure whether palliative care was available, while five more told us that they were sure it was not available.”

There were also several misconceptions about palliative care within the staff answering the calls. For instance, callers were told that palliative care services were available for certain patients, such as end of life patients only that there were not doctors who focused on symptom management, that availability depended on a review of medical records or that the call recipient was unfamiliar with the term altogether.

When answering “yes” to palliative care services being available at a particular cancer center, call recipients often referred the callers to patient navigation and genetic assessment services.

The he authors on the study noted, “The availability of these services does not guarantee their accessibility; efforts much be made to close this availability/accessibility gap.”

Overall, the study found that if the frontline office staff of a cancer center do not understand some services, it could impede patients’ accessibility to those services.

“As oncologists, we like to believe that when we refer patients to our institution’s helpline, that they will get connected to the services they need, but that doesn’t always happen,” Arif Kamal, M.D., an oncologist at Duke Cancer Institute and co-investigator on the study said in a press release. “It’s important for oncologists to be aware of these barriers and to work to eliminate them.”

The researchers suggest expanding awareness and education to patient-facing cancer center employees about the services available. Katheryn Hutchins, a third-year medical student at Duke University and lead author on the study, pointed out that this study “provides an opportunity for cancer centers to empower their front-line staff, as well as the oncology care team, through education and training so the entire enterprise has a common understanding of palliative care and how to access it.”