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Hospice patients’ views on research in palliative care

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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.
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Keywords: hospice; narrative medicine; palliative care; research ethics

Document Type: Research Article

Affiliations: 1: Faculty of Health, University of Newcastle, Newcastle, New South Wales 2: Faculty of Education, Queensland University of Technology, Brisbane, Queensland, Australia

Publication date: 2006-07-01

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