Patients' interests should be put before research

EDITOR,—I was shocked by every aspect of the paper on the care of dying patients in hospital, but perhaps most of all by the nature of observer nonparticipant research in this context.1 I have no interest in attacking the researchers concerned, enmeshed as they are in a system not of their making, but this paper seems to raise issues of wider concern: it is to me a clear case of the “scientific” approach leading to grossly unethical behaviour. How could anyone in the interests of a research paper, however important, leave a dying woman begging for a glass of water on no fewer than four occasions for 30 minutes? How could this non-participating observer allow a woman dying of hepatic carcinoma to fail in attempting to drink unaided for four hours before helping her? In my opinion research of this nature needs rethinking at the highest level, and soon.

It also seems to be a matter of concern that, notwithstanding the reasons given for the delay in its preparation, this report was not published for 10 years, during which time (as the report itself indicates) similar suffering has continued in hospitals unabated.

I entirely agree, however, with the paper's gist. The Natural Death Centre believes that more NHS resources need to be put into the care of people dying at home, and we have started a nationwide Befriending Network (which any general practitioner can make use of), whereby trained volunteers will sit at the home of a critically ill person to assist the carer.