'Mystery Shoppers' Call About Palliative Care, Get Mixed Bag

Roxanne Nelson, BSN, RN

September 12, 2016

SAN FRANCISCO ― Although many cancer centers offer palliative and supportive care services, patients may still face challenges when they try to access them, according to new findings.

Using a novel approach, researchers from Duke University in Durham, North Carolina, posed as "mystery shoppers" and placed 160 calls to 40 National Cancer Institute (NCI)–designated cancer centers.

They used a standardized call script in which they explained that their mother, aged 58 years, had been recently diagnosed with inoperable liver cancer.

In their calls, the researchers inquired about the availability not only of palliative care services but also of the other supportive services that were supposed to be available.

Only on 37% of the calls were they able to reach a person who could confirm that these services were available at the center.

In one third of calls (34%), a person was reached but said that they were unable to answer questions about the services offered or reported that one or more of the supportive care services were unavailable.

In 12.3% of calls that reached a person, callers were unable to obtain accurate information about the availability of palliative care.

The findings were presented during a poster session at the Palliative Care in Oncology Symposium (PCOS) 2016.

"We weren't really sure what to expect when we initiated the calls, but I was really surprised at some of the responses we got," said lead author Kathryn Hutchins, a fourth-year medical student at Duke University. "And it did vary as to the reasons that people gave for why it wasn't available.

"In two calls, the person who took our call asked what palliative care was," she told Medscape Medical News. "They really didn't know what it was."

Hutchins explained that they went to the cancer centers' websites and followed the directions that were geared to new patients seeking information.

"We would come in as any other new family and asked if you could tell us about the services you offer," she explained. "In some cases, they would transfer us to someone else or tell us you have to ask at our first appointment — the responses varied tremendously.

"We never made an appointment, but we wanted to find out what information you can get without actually entering the cancer center," she said.

Mystery Shopper Approach

All NCI-designated comprehensive cancer centers report having consultative palliative care services available to their patients.

Palliative care services are required for Commission on Cancer (CoC) accreditation, along with several other supportive care services, including cancer education, multidisciplinary care teams, patient navigators, counseling/psychiatric care, genetic counseling, and clinical trials.

When deciding on a treatment center, patients and family members often make decisions on the basis of the availability of these services.

The researchers sought to answer this question: when "shopping" for a cancer center, what information can patients receive over the telephone about the availability of palliative care and other supportive services?

In 9.5% of calls, cancer center staff gave an answer other than "yes" as to the availability of palliative care services, although these services were available at the institution.

Callers were also told that palliative care was indicated only for patients at the end of life and that there weren't any physicians who focused on symptom management.

In some cases, callers were informed that the availability of palliative care was dependent on a review of medical records, and 12 staff members who took the calls said that they were unsure about the availability of palliative care or did not know what the term meant.

"The vast majority of people we spoke with were warm and kind and wanted to help us, but they just didn't have the information in many cases," Hutchins said.

"It is essential that all members of the team are aware of what is available, and that includes your front-line office staff," she emphasized. "We just asked if the care was available, and we didn't offer any specifics about the patient."

More Investigation Needed

Commenting on the study, Andrew Epstein, MD, a medical oncologist at Memorial Sloan Kettering Cancer Center in New York City, noted that this is an important study that "seems to illustrate an inconvenient truth that, while technically, all cancer centers offer palliative care, there may indeed be a gap in the ability to access that care.

"This is important for patients and families, and we need to have adequate access delivery when they are going through a serious illness," he said in an interview.

Further studies are needed, Dr Epstein emphasized.

"When you look at the actual details of the study, there were several things that need to be investigated," he said. "For example, they asked a number of questions — six or seven ― and that's a high bar to set, especially when the calls are going into a front-line person.

"Granted, they are the ones who are going to be taking these calls, so they need to be able to answer questions, but this is a dynamic field," Dr Epstein continued. "You have seven questions, and to get them all right 40% of the time is not as bad as it sounds."

With respect to the fact that in the study, 10% of cancer center staff gave an answer other than "yes" as to the availability of palliative care services, "that means that 90% of the time, the appropriate answer was given, so we need to know what is happening in that 10% of the time," Dr Epstein said.

Overall, Dr Epstein noted that this was an interesting methodology to use, "if not a little bit sneaky," and it "shines a light on the ongoing need to improve supportive and palliative care services to patients with serious illnesses."

The study received no funding. The author and Dr Epstein have disclosed no relevant financial relationships.

2016 Palliative Care in Oncology Symposium. Abstract 122. Presented September 9, 2016.

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