Reviewer

The current preoccupation with ‘evidence based medicine’ has led to much rehearsal in the literature of the particular problems of research in palliative care. In this study patients in a specialist palliative care unit in Scotland were asked about their willingness to be involved in three hypothetical studies during a structured interview. Their nurses indicated their willingness for patients to be approached about the same studies in a questionnaire adapted from the interview schedule.

Nine of the 40 patients recruited who were unsure or unhappy about research in principle were willing to participate in particular studies after further explanation. Only 8% of patients were unhappy about research in principle and would not have agreed to any of the three studies. Extra blood tests, uncertainty about randomisation and the burden of recording symptoms daily were given as reasons for not taking part. Only four patients felt one of the studies would upset them. Some patients refused a study screening for mood disturbance because they did not feel anxious or depressed. Nurses tended to be more willing for patients to be involved than the patients themselves were, but predicted the reasons which led patients to decline participation.

Patients’ reasons for being involved in research were generally altruistic; they wanted to help others or thought research was ‘important’. Others hoped to benefit personally or wanted to repay the staff for their care.

The authors did not find ‘gatekeeping’ to be a problem, however the study once again illustrates the problems of involving ill, frail patients. Forty patients were recruited out of 200 possible patients admitted, mainly due to cognitive impairment (21%) and frailty (19%). The authors conclude the study underlines the importance of determining “realistic methodology” to allow completion of good studies without burdening or exploiting our frail patient population.