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Palliative care associated with negative stigma, impending death
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Patients with advanced cancer and their caregivers perceived palliative care negatively and associated it with end-of-life care, according to the results of a secondary qualitative analysis.
This association persisted even among patients and caregivers who reported that palliative care improved their quality of life.
Camilla Zimmermann
“Initially, [patients] 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,” Camilla Zimmermann, MD, PhD, director of the palliative care program at University Health Network and medical director of the Al Hertz Centre for Supportive and Palliative Care at Princess Margaret Cancer Centre, said in a press release. “However, 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. Patients told us if palliative care were called something else, they wouldn't feel so stigmatized.”
Zimmermann and colleagues examined perceptions of palliative care in patients with advanced lung, gastrointestinal, genitourinary, breast or gynecologic cancers — all of whom had a life expectancy between 6 and 24 months — and their caregivers, who participated in a randomized study previously published in The Lancet. The study showed the addition of early palliative care to standard care in the outpatient clinic setting improved quality of life.
The current analysis included data from 48 patients (intervention arm, n = 26; median age, 61 years; 73.1% female; control arm, n = 22; median age, 65 years; 45.5% female) and 23 of their caregivers (intervention arm, n = 14; median age, 61 years; 51.7% female; control arm, n = 9; median age, 57 years; 88.8% female) who completed semi-structured interviews.
Participants in the intervention and control arms reported their initial perceptions of palliative care were of death, hopelessness, dependency and end-of-life comfort care for inpatients. Participants in both groups also reported feeling “frightened” and “shocked” when palliative care was introduced, and many participants in the intervention group were resistant to participate in the intervention.
Many participants stated these perceptions were influenced by health care providers, who presented palliative care as a last-resort option.
As the evaluation continued, however, those who were in the intervention arm developed a deeper understanding of palliative care and began to see it as “ongoing care” and said it improved “quality of living.” Still, participants who received palliative care reported that they felt as if palliative care carried a stigma and would have liked it to be better explained by health care professionals.
Further, intervention participants expressed discomfort using the term “palliative care” with others because it may be associated with imminent death. Some participants renamed palliative care “symptom control” and called their palliative care physicians “medication specialists” or “pain specialists.”
However, control participants’ perceptions of palliative care did not change over the course of the study, and these participants did not see a point in renaming palliative care.
Based on these findings, Zimmerman and colleagues concluded that there is a strong stigma attached to palliative care, which may persist despite patients having a positive experience.
“We need to promote the message and do so in actions, as well as words, that palliative care is supportive care that improves quality of life throughout the course of illness,” Zimmermann said. “It is not something to be afraid of or that is stigmatizing, but is helpful even while patients are receiving life-prolonging therapies.”
Researchers noted the study included an overrepresentation of women, and that the qualitative nature of the study led to generalized responses.
Even if palliative care is renamed “supportive care,” the stigma will persist if it is only introduced when life-prolonging therapies are no longer an option, Anthony J. Caprio, MD, interim chair of the department of family medicine at Carolina HealthCare System, wrote in an accompanying editorial.
“A shift in oncology care is necessary to facilitate early, concurrent palliative care to maximize outcomes for patients with cancer,” Caprio wrote. “Instead of dichotomizing standard oncology care and palliative care, palliative care should start at the time of cancer diagnosis and continue across the spectrum of cancer care. ... If palliative care is viewed as an essential evidence-based component of advanced disease management, then the benefits of palliative care support should be available and recommended to all patients and caregivers at every stage of their illness.” – by Nick Andrews
Disclosure : Zimmerman reports grants from the Canadian Cancer Society and support from the Rose Family Chair in Supportive Care at University of Toronto for the conduct of this study. The other researchers and Caprio report no relevant financial disclosures.
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