Patients fearful of palliative care stigma, more education needed

There remains a negative stigma regarding palliative care among patients that persists even after positive experiences with an early palliative care program, and more education and outreach is necessary for early integration of the program to be successful, according to data published in the Canadian Medical Association Journal.

“Early palliative care is encouraged by international agencies such as the WHO, which states explicitly that ‘palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life,’” Camilla Zimmermann, MD, PhD, of the University of Toronto, and colleagues wrote. “Nevertheless, referrals to palliative care are typically made late in the disease course. Negative attitudes toward palliative care among patients and caregivers are often cited by physicians as a reason for late referrals to palliative care services, and a change of name to ‘supportive care’ has been proposed.”

To study perceptions of palliative care among patients with advanced cancer and their caregivers, the researchers questioned 48 patients and 23 caregivers who had been part of a cluster randomized, controlled trial. The trial compared early palliative care and standard care.

The study included 26 patients and 14 caregivers from the palliative care group and 22 patients and nine caregivers from the control group who participated in semistructured interviews to assess their views of palliative care. They researchers used the grounded theory method for data collection and analysis.

According to the researchers, patients and caregivers in both groups associated palliative care with death, hopelessness, dependency and end-of-life comfort care for inpatients. This led to fear and avoidance of the program, feelings that originated from interactions with health care professionals. However, those in the intervention group during the trial eventually came to view palliative care more broadly as “ongoing care” that improved their quality of life. Still, the stigma persisted, leading those in the intervention group to emphatically state that palliative care needed to be reframed, better explained by health care professionals or renamed. Those in the control group generally thought renaming palliative care would be a pointless gesture.

“Patients and their caregivers in both trial groups perceived palliative care to have a negative and frightening association with death, hopelessness and dependency,” Zimmermann and colleagues wrote. “Although this perception changed for participants in the intervention group, many continued to feel a stigma associated with the term palliative care and felt that rebranding or renaming palliative care could be helpful.” – by Jason Laday

Disclosure: Zimmermann reports grants from the Canadian Cancer Society and funding from the Ontario Ministry of Health and Long-Term Care to her institution. She is also the Rose family chair in supportive care. There were no other relevant financial disclosures.