Hospice patients' views on research in palliative care

Terry, Wendy, Olson, L. G., Ravenscroft, P., Wilss, Lynn and Boulton-Lewis, Gillian (2006) Hospice patients' views on research in palliative care. Internal Medicine Journal, 36 7: 406-413. doi:10.1111/j.1445-5994.2006.01078.x

Author Terry, Wendy
Olson, L. G.
Ravenscroft, P.
Wilss, Lynn
Boulton-Lewis, Gillian
Title Hospice patients' views on research in palliative care
Journal name Internal Medicine Journal   Check publisher's open access policy
ISSN 1444-0903
Publication date 2006-07
Sub-type Article (original research)
DOI 10.1111/j.1445-5994.2006.01078.x
Volume 36
Issue 7
Start page 406
End page 413
Total pages 8
Place of publication New York, New York, USA
Publisher Blackwell Publishing
Language eng
Subject 1103 Clinical Sciences
Abstract 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.
Keyword research ethics
palliative care
narrative medicine
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status Unknown

Document type: Journal Article
Sub-type: Article (original research)
Collections: Excellence in Research Australia (ERA) - Collection
School of Medicine Publications
School of Education Publications
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Citation counts: TR Web of Science Citation Count  Cited 30 times in Thomson Reuters Web of Science Article | Citations
Scopus Citation Count Cited 38 times in Scopus Article | Citations
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Created: Thu, 12 Mar 2009, 09:35:44 EST by Ms Karen Naughton on behalf of School of Medicine