There is a very strong stigma attached to palliative care — and it can persist even after positive experiences with an early palliative care intervention, found a recent study.1
“We conducted a randomized, controlled trial on early involvement of palliative care in the outpatient setting for patients with advanced cancer,” says lead author Camilla Zimmermann, MD, PhD, FRCPC, head of the palliative care program at the University Health Network and the Princess Margaret Cancer Centre, both in Toronto, Canada.
The group that received early palliative care alongside their usual cancer care had improved quality of life, compared to the group that received routine cancer care alone.
“At the end of the four-month study period, we did a sub-study of this larger trial, on perceptions of palliative care,” says Zimmermann. The researchers conducted interviews with patients in the early palliative care group and their caregivers, as well as patients and caregivers in the usual care group.
“We wanted to explore perceptions of palliative care in both groups,” says Zimmermann. Researchers were interested in where these perceptions came from, and whether perceptions changed in the group that received early palliative care.
“Some findings were as we predicted, and others were surprising,” says Zimmermann. The researchers hypothesized that patients and their caregivers would equate palliative care with end-of-life care. “And indeed they did,” she says.
The perceptions of palliative care were largely of death, hopelessness, dependency, and end-of-life comfort care for inpatients.
“What impressed us was the degree to which the participants reported that their perceptions were influenced by healthcare providers,” says Zimmermann.
Some participants gave compelling accounts of how physicians and nurses portrayed palliative care as only being relevant at the end of life. Other participants described how healthcare professionals explained to them that palliative care was relevant throughout the illness. These clinicians encouraged early contact with palliative care.
“So we, as healthcare providers, have a profound influence on how palliative care is portrayed and provided,” says Zimmermann.
Control group participants generally thought it was pointless to rename palliative care. However, many participants in the group which had early palliative care felt that a different name was necessary in the outpatient setting.
The researchers asked what name the patients would choose, but none came up with any suggestions. “We then asked what they thought of the name ‘supportive care,’ and there was a mixed response,” says Zimmermann.
Most patients who thought the name should be changed were enthusiastic about this terminology. Others — mostly those who thought the name didn’t need to be changed — said it was too vague.
“Overall, all patients thought there should be rebranding, while a subset thought the name should be changed,” says Zimmermann. This group was generally supportive of the name “supportive care.”
The researchers were surprised at the degree to which many patients felt stigmatized by the label “palliative care.”
“They avoided mentioning to friends, and even family members, that they were being cared for by a palliative care team,” says Zimmermann. “This serves to underline how we need to redefine palliative care on a broader societal level.”
While healthcare providers know, or should know, that palliative care is relevant throughout the course of the illness, “that is not how it is seen on a larger social scale,” says Zimmermann.
Zimmermann says the study’s main ethical implications involve stigma and access. “Patients should not feel afraid to access palliative care, or to disclose to others that they are receiving palliative care,” she says.
Because palliative care has such a negative connotation — reinforced in many cases by healthcare professionals — patients and their families do not get access to important services from which they could benefit. These include expert pain and symptom management, psychological support, and assistance with navigating a complex healthcare system.
“We need to work together to undo this stigma and advocate for access to palliative care throughout the cancer journey,” says Zimmermann.
- Zimmermann C, Swami N, Krzyzanowska M, et al. Perceptions of palliative care among patients with advanced cancer and their caregivers. CMAJ 2016; 188(10):E217-E227.
- Camilla Zimmermann, MD, PhD, FRCPC, Head, Palliative Care Program, University Health Network, Toronto, Canada. Phone: (416) 946-4501 ext. 3477. Fax: (416) 946-2866. Email: Camilla.Zimmermann@uhn.ca.