What's in a name: Is the moniker 'palliative care' too loaded?



NEW ORLEANS – That which we call a rose by any other name would smell as sweet. Perhaps not, if the conversation turns to palliative care.

A telephone survey of 169 patients with advanced cancer found that those randomized to hear the term "supportive care" instead of "palliative care" rated their understanding, overall impressions and future perceived need for those services significantly higher.

Patrice Wendling/IMNG Medical Media

Rachel Maciasz

In contrast, there was no significant difference in outcomes when patients heard either a "patient-centered" or "traditional" description of palliative/supportive care services, Rachael Maciasz said at the annual meeting of the American Association of Hospice and Palliative Medicine.

"It may be that ‘palliative care’ is so loaded with advanced cancer patients because of family members’ or friends’ experiences with this in the past that [they think] their family member is going to die," she said. "Perhaps what comes after that, no matter how you describe it, you can’t change that impression."

Patients with stage IV solid tumors or refractory/recurrent hematologic malignancies were recruited from 20 oncologists at two comprehensive cancer centers in Pittsburgh, and randomized to one of four survey groups: "palliative care/patient-centered," "palliative care/traditional," "supportive care/patient-centered," and "supportive care/traditional." Outcomes were measured using 10-point Likert scales, with 0 meaning "do not understand at all," or impression "not favorable at all" or "strongly disagree with" a need for services.

The most common cancer diagnoses were breast (32%), lung (18%), and gastrointestinal (13%).

The majority (63%) of patients were female, 95% were white, 88% were Catholic/Christian, 4% Jewish, and 7% other religion or agnostic. The most common cancer diagnoses were breast (32%), lung (18%), and gastrointestinal (13%). Their average age was 62 and roughly 11% had prior exposure to palliative care services.

The supportive care groups had significantly higher mean ratings than did the palliative care groups for overall understanding of what the service had to offer (7.7 vs. 6.8) and for overall favorable impressions (8.4 vs. 7.3), said Ms. Maciasz, a fourth-year medical student and a Doris Duke Clinical Research Fellow at the University of Pittsburgh.

Patients rated their current need for supportive and palliative care services equally, but were significantly more likely to perceive a future need for supportive services for themselves or family (8.6 vs. 7.7).

All patients rated their willingness to see a supportive/palliative care specialist as higher if their oncologist recommended it rather than if they had to ask their oncologist whether they could see a specialist on their own (8.6 vs. 6.0).

In a robust multivariable regression model that adjusted for term, description, and all significant variables in univariate analyses, the term supportive care was again significantly associated with more favorable impressions (correlation coefficient 1.24) and higher future perceived need (correlation coefficient 0.93), Ms. Maciasz said.

The qualitative results also paralleled the quantitative results.

"I had the impression that fewer patients went in with an impression of palliative care and that if you could explain it in ways that made perfect sense and described how awesome it is, that it wouldn’t matter if it was [called] palliative or supportive," Ms. Maciasz said in an interview. "I think it’s just loaded, but I don’t think it’s unique to patients."

Research data have shown that some oncologists don’t like the term palliative care. "I think there’s something about the term palliative care that means I can’t give you everything you need," she suggested.

Ms. Maciasz and her coauthors reported having no financial disclosures.

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