Hospice patients’ views on research in palliative care

Terry, Wendy, Olson, L.G., Ravenscroft, P., Wilss, Lynn A., & Boulton-Lewis, Gillian M. (2006) Hospice patients’ views on research in palliative care. Internal Medicine Journal, 36(7), pp. 406-413.

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Background: This project was conducted to investigate whether the concerns that researchers have about including terminally ill patients in research were shared by a sample of terminally ill patients.----- Methods: Twenty-two patients admitted to a hospice participated in semistructured interviews; 18 patients had advanced malignant disease and 13 were women; their ages ranged from 28 to 93 years. The interview transcripts were analysed for common themes and particular attention was paid to the reasons patients gave for their views.----- Results: All the patients wanted to participate in research. Patients advanced one or more of several reasons for participation, the commonest being altruism, enhancement of a sense of personal value, the assertion of persisting autonomy and the value they placed on a commitment by doctors to optimising care by research. They rejected the view that their consent might be non-autonomous and put forward consistent views about what they considered relevant to consent.----- Conclusions: Our patients did not share the concerns of ethicists about the difficulties and hazards of research with the terminally ill. These patients’ views are not reflected in the professional consensus.

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ID Code: 21007
Item Type: Journal Article
Refereed: Yes
Keywords: Hospice patients, Views on research, Palliative care
DOI: 10.1111/j.1445-5994.2006.01078.x
ISSN: 1444-0903
Divisions: Past > QUT Faculties & Divisions > Faculty of Built Environment and Engineering
Current > QUT Faculties and Divisions > Faculty of Education
Past > Schools > School of Design
Copyright Owner: Copyright 2006 Blackwell Publishing
Copyright Statement: The definitive version is available on publication at www3.interscience.wiley.com
Deposited On: 08 Jun 2009 23:54
Last Modified: 29 Feb 2012 13:18

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