Many Cancer Patients Feel Stigmatized by Label of Palliative Care

MedicalResearch.com Interview with:

Camilla Zimmermann, MD, PhD, FRCPC Head, Division of Palliative Care, University Health Network Research Director, Lederman Palliative Care Centre, Princess Margaret Cancer Centre Associate Professor, Department of Medicine, University of Toronto Rose Family Chair in Supportive Care, Faculty of Medicine, University of Toronto Toronto, Canada

Dr. Camilla Zimmermann

Camilla Zimmermann, MD, PhD, FRCPC
Head, Division of Palliative Care, University Health Network
Research Director, Lederman Palliative Care Centre, Princess Margaret Cancer Centre
Associate Professor, Department of Medicine, University of Toronto
Rose Family Chair in Supportive Care, Faculty of Medicine, University of Toronto
Toronto, Canada

Medical Research: What is the background for this study?

Dr. Zimmermann: Early palliative care is increasingly recommended by national and international health agencies, and is in keeping with the definition of palliative care as being relevant throughout the course of life-threatening illness. We conducted a randomized controlled trial of early palliative care (referral and follow-up in a specialized outpatient palliative care clinic), versus routine oncology care, in 461 ambulatory patients with advanced cancer. The results showed that early palliative care improved quality of life and satisfaction with care. The current study was a follow-up study, where we conducted qualitative interviews with 71 patients and caregivers from the intervention and control arms of the larger trial. We asked them about their attitudes and perceptions of palliative care and whether these changed during the trial.

Medical Research: What are the main findings?

Dr. Zimmermann: In both groups, palliative care was initially perceived to be synonymous with death, hopelessness, dependency and end-of-life care in an inpatient setting. This impression was formed mainly from personal experience through contact with the healthcare system, and to a lesser extent by the media. In the intervention group, however, the impression changed over time, with patients gaining a remarkably positive impression of palliative care, and perceiving it to be relevant throughout the course of their illness. Nevertheless, many in this group continued to feel stigmatized by the label, “palliative” and advocated for better patient education about palliative care, as well as for a potential name change for palliative care delivered in the early outpatient setting.

Medical Research: What should clinicians and patients take away from your report?

Dr. Zimmermann: Clinicians have an important role in educating patients and their families about the relatively new definition of palliative care as care that improves quality of life throughout the course of any life-threatening illness. It is care that can make a marked difference in symptom control, emotional and spiritual well-being, and social support, and is relevant for anyone who could use assistance in these domains, from diagnosis onwards.

Medical Research: What recommendations do you have for future research as a result of this study?

Dr. Zimmermann: Future research should study novel ways to destigmatize palliative care and to encourage routine access to it.

Citation:

CMAJ2016. DOI:10.1503/cmaj.151171

Perceptions of palliative care among patients with advanced cancer and their caregivers

Camilla Zimmermann MD PhD, Nadia Swami BSc, Monika Krzyzanowska MD MPH,
Natasha Leighl MD MMSc, Anne Rydall MSc, Gary Rodin MD, Ian Tannock MD PhD, Breffni Hannon MB ChB

 

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