‘Mystery shopper’ study finds barriers to palliative care at major cancer centers
"The benefits of palliative care cannot be overstated, and patients are increasingly requesting palliative and supportive care services," said ASCO Expert Andrew S. Epstein, MD. "In order for the full potential of palliative care programs to be realized, oncologists and others caring for people with cancer need to be aware of potential barriers to access, so that they can work with their entire cancer enterprise to ensure patients who want and need palliative care are able to access it."
ALEXANDRIA, Va. – A team of researchers, using a novel approach, found that while many cancer centers offer palliative and supportive care services, patients may face challenges when trying to access them. The study showed that expanding awareness and education to patient-facing cancer center employees about such services could make an important difference. This study will be presented at the upcoming 2016 Palliative Care in Oncology Symposium in San Francisco.
Researchers from Duke University adopted a "mystery shopper" format and placed 160 telephone calls to 40 major cancer centers inquiring about palliative and supportive care needs for a family member. Researchers chose to focus on National Cancer Institute-designated cancer centers because they all provide palliative care services along with other supportive care services. Results from the qualitative assessment showed that in approximately one-third of calls, researchers had difficulty obtaining information about palliative care services.
In nearly 10% of calls, cancer center staff gave an answer other than "yes" as to the availability of palliative care services, even though such services were available. Answers varied and included responses such as: palliative care was for end-of-life patients only; no physicians specialized in symptom management; a medical record review would be needed first; and 12 staff members said that they were unsure about the availability of palliative care or were unfamiliar with the term. Overall, only 37% of callers were told all seven supportive care services inquired about were offered.
When answering "yes," call recipients were most likely to refer the callers to patient navigation and genetic assessment services.
"Cancer centers have worked very hard to establish palliative and supportive care services to better meet the needs for the whole patient," said lead author Kathryn Hutchins, a third-year medical student at Duke University. "It's sobering to hear that such services are not readily accessible at many centers. However, it provides an opportunity for cancer centers to empower their front-line staff, as well as the oncology care team, through education and training so that the entire enterprise has a common understanding of palliative care and how to access it."
An ASCO provisional clinical opinion recommends that palliative care be offered along with treatment to slow, stop, or eliminate the cancer for patients with metastatic cancer and those who have many or severe symptoms.
"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. It's important for oncologists to be aware of these barriers and to work to eliminate them," said co-investigator Arif Kamal, MD, an oncologist at Duke Cancer Institute.
This study did not receive any research funding.