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Research

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

Camilla Zimmermann, Nadia Swami, Monika Krzyzanowska, Natasha Leighl, Anne Rydall, Gary Rodin, Ian Tannock and Breffni Hannon
CMAJ July 12, 2016 188 (10) E217-E227; DOI: https://doi.org/10.1503/cmaj.151171
Camilla Zimmermann
Division of Medical Oncology (Zimmermann, Krzyzanowska, Leighl, Tannock, Hannon), Department of Medicine, Department of Psychiatry (Zimmermann, Rodin), University of Toronto; Department of Supportive Care (Zimmermann, Swami, Rydall, Rodin, Hannon), Department of Medical Oncology (Krzyzanowska, Tannock), The Campbell Family Cancer Research Institute (Zimmermann, Rodin, Tannock), Princess Margaret Cancer Centre, University Health Network, Toronto, Ont.
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  • For correspondence: camilla.zimmermann@uhn.ca
Nadia Swami
Division of Medical Oncology (Zimmermann, Krzyzanowska, Leighl, Tannock, Hannon), Department of Medicine, Department of Psychiatry (Zimmermann, Rodin), University of Toronto; Department of Supportive Care (Zimmermann, Swami, Rydall, Rodin, Hannon), Department of Medical Oncology (Krzyzanowska, Tannock), The Campbell Family Cancer Research Institute (Zimmermann, Rodin, Tannock), Princess Margaret Cancer Centre, University Health Network, Toronto, Ont.
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Monika Krzyzanowska
Division of Medical Oncology (Zimmermann, Krzyzanowska, Leighl, Tannock, Hannon), Department of Medicine, Department of Psychiatry (Zimmermann, Rodin), University of Toronto; Department of Supportive Care (Zimmermann, Swami, Rydall, Rodin, Hannon), Department of Medical Oncology (Krzyzanowska, Tannock), The Campbell Family Cancer Research Institute (Zimmermann, Rodin, Tannock), Princess Margaret Cancer Centre, University Health Network, Toronto, Ont.
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Natasha Leighl
Division of Medical Oncology (Zimmermann, Krzyzanowska, Leighl, Tannock, Hannon), Department of Medicine, Department of Psychiatry (Zimmermann, Rodin), University of Toronto; Department of Supportive Care (Zimmermann, Swami, Rydall, Rodin, Hannon), Department of Medical Oncology (Krzyzanowska, Tannock), The Campbell Family Cancer Research Institute (Zimmermann, Rodin, Tannock), Princess Margaret Cancer Centre, University Health Network, Toronto, Ont.
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Anne Rydall
Division of Medical Oncology (Zimmermann, Krzyzanowska, Leighl, Tannock, Hannon), Department of Medicine, Department of Psychiatry (Zimmermann, Rodin), University of Toronto; Department of Supportive Care (Zimmermann, Swami, Rydall, Rodin, Hannon), Department of Medical Oncology (Krzyzanowska, Tannock), The Campbell Family Cancer Research Institute (Zimmermann, Rodin, Tannock), Princess Margaret Cancer Centre, University Health Network, Toronto, Ont.
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Gary Rodin
Division of Medical Oncology (Zimmermann, Krzyzanowska, Leighl, Tannock, Hannon), Department of Medicine, Department of Psychiatry (Zimmermann, Rodin), University of Toronto; Department of Supportive Care (Zimmermann, Swami, Rydall, Rodin, Hannon), Department of Medical Oncology (Krzyzanowska, Tannock), The Campbell Family Cancer Research Institute (Zimmermann, Rodin, Tannock), Princess Margaret Cancer Centre, University Health Network, Toronto, Ont.
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Ian Tannock
Division of Medical Oncology (Zimmermann, Krzyzanowska, Leighl, Tannock, Hannon), Department of Medicine, Department of Psychiatry (Zimmermann, Rodin), University of Toronto; Department of Supportive Care (Zimmermann, Swami, Rydall, Rodin, Hannon), Department of Medical Oncology (Krzyzanowska, Tannock), The Campbell Family Cancer Research Institute (Zimmermann, Rodin, Tannock), Princess Margaret Cancer Centre, University Health Network, Toronto, Ont.
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Breffni Hannon
Division of Medical Oncology (Zimmermann, Krzyzanowska, Leighl, Tannock, Hannon), Department of Medicine, Department of Psychiatry (Zimmermann, Rodin), University of Toronto; Department of Supportive Care (Zimmermann, Swami, Rydall, Rodin, Hannon), Department of Medical Oncology (Krzyzanowska, Tannock), The Campbell Family Cancer Research Institute (Zimmermann, Rodin, Tannock), Princess Margaret Cancer Centre, University Health Network, Toronto, Ont.
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Abstract

Background: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers.

Methods: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis.

Results: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants’ initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as “ongoing care” that improved their “quality of living” but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting.

Interpretation: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful.

  • Accepted January 18, 2016.
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Canadian Medical Association Journal: 188 (10)
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12 Jul 2016
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Perceptions of palliative care among patients with advanced cancer and their caregivers
Camilla Zimmermann, Nadia Swami, Monika Krzyzanowska, Natasha Leighl, Anne Rydall, Gary Rodin, Ian Tannock, Breffni Hannon
CMAJ Jul 2016, 188 (10) E217-E227; DOI: 10.1503/cmaj.151171

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Perceptions of palliative care among patients with advanced cancer and their caregivers
Camilla Zimmermann, Nadia Swami, Monika Krzyzanowska, Natasha Leighl, Anne Rydall, Gary Rodin, Ian Tannock, Breffni Hannon
CMAJ Jul 2016, 188 (10) E217-E227; DOI: 10.1503/cmaj.151171
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