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


CONCLUSIONS
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.
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. camilla.zimmermann@uhn.ca.
Camilla
C
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.
Nadia
N
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.
Monika
M
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.
Natasha
N
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.
Anne
A
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.
Gary
G
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.
Ian
I
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.
Breffni
B
Hannon
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D010166:Palliative Care / Q000379:methods*; D010361:Patients / Q000523:psychology*; D011788:Quality of Life; D057545:Social Stigma; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods*