Palliative care has serious branding issues that prevent many patients and caregivers from seeking it, says a new Canadian study.
Palliative care is a specialized type of medical care provided mostly to patients who are already in the advanced stages of disease like cancer. Its goal is to improve the patient's quality of life by managing both the stress and the symptoms related to the illness.
However, the study now published in Canadian Medical Association Journal shows that these benefits are overshadowed by the constrained idea about palliative care.
"Patients with advanced cancer and their caregivers described palliative care as carrying a negative stigma associated with death and with care at the very end of life," said the study.
It Means No Hope
For the research, the team chose 48 advanced cancer patients with a prognosis of half a year to two years, as well as 23 caregivers. They were all part of a randomized clinical trial that compared standard and palliative oncologic care.
Twenty-six of the 48 patients served as the intervention group and received early palliative care in an outpatient setting while the rest were the control group and only had standard care. Caregivers of the intervention group, meanwhile, had the option to join clinic visits. The participants were then interviewed about their perception about palliative care.
The results reveal that, initially, palliative care for patients and caregivers equated to death, state of hopelessness, a life of no meaning and end of life.
Both patient groups also felt fear and shock when they were introduced to palliative care, particularly if they had already encountered health care teams who might have presented it as a last resort. Those who received only standard care chose to avoid it because they wanted to remain optimistic or they thought such care is irrelevant at that point in their lives.
Change Of Heart
While there's no change in the negative perception about palliative care before and after the trial among those who received only standard care, intervention groups developed a "more comfortable" attitude and broader understanding, and were able to experience an improved quality of life.
However, this happened only after the health care team, which included the oncologists and the researchers, explained the process properly to them.
"Patients told us if palliative care were called something else, they wouldn't feel so stigmatized," said Dr. Camilla Zimmermann, the University Health Network's Palliative Care head and lead author.
The research highly suggests "rebranding" palliative care so that it includes other types of services that can be taken advantage of at any time during the illness. The definition of the term may also have to be adjusted so it is less confusing and more consistent while participants recommend including palliative care during discussions about diagnosis or launching public education.
