Healthcare professionals must do a better job of explaining what palliative care is so that ill people and their families can realize full benefits and not feel stigmatized for doing so, according to new research published in the Canadian Medical Association Journal.
“We have a branding issue, and that’s the central message of this research,” principal investigator Camilla Zimmermann, M.D., Ph.D., said in a statement. “Although the definition has changed, we are not promoting it in the right way in the healthcare system.”
The World Health Organization broadened its definition of palliative care in 2002 to state that “palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life,” but definitions are inconsistent and confusing, said Zimmermann, head of the palliative care program at University Health Network in Toronto and medical director at the Al Hertz Center for Supportive and Palliative Care at the Princess Margaret Cancer Center.
“Until there is a consistent definition of palliative care that is promoted by those referring patients and collaborating in their treatment,” she added, “it is unreasonable to expect that patients and families will embrace a broadened conceptualization of palliative care.”
The researchers performed and analyzed qualitative interviews with 48 people who had advanced cancers and 23 caregivers who had participated in an earlier randomized controlled study of 461 patients.
In the earlier study, half the participants received early palliative care intervention in the outpatient clinic setting in addition to standard cancer care. The other half received standard cancer care. Participants had advanced lung, gastrointestinal, genitourinary, breast or gynecologic cancer and estimated survival of six to 24 months. The group that received early palliative care intervention had improved quality of life.
In the follow-up study, Zimmermann said, “initially, both groups perceived palliative care as synonymous with death, as care at the end of life in a setting where they would die and in general as a frightening, anxiety-provoking thing they wanted to avoid.”
For those in an intervention group in the study, however, the perception changed. “They began to see palliative care as relevant early in the course of their illness and as being beneficial to them by supporting them and improving their quality of life.”
Despite a positive experience, however, participants in the intervention group still felt stigmatized by the label palliative care. “Patients told us if palliative care were called something else, they wouldn’t feel so stigmatized,” Zimmermann said. “Importantly, the source of this stigma was mainly in the medical system, because doctors and nurses had given the impression that palliative care was only end-of-life care.”
Zimmermann also holds the Rose Family Chair in Supportive Care at the University of Toronto.
Zimmermann talks about the research in the video below.
