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.