An initial assessment of suffering in terminal illness

Abstract

This paper reports a study which aimed to develop an instrument which records dying patients' perceptions of their own needs. The particular stimulus for this was the recognition that the ability to relieve suffering in the dying depended on first understanding what were major concerns to the patient. These often differed from the problems thought by medical and nursing staff to be of greatest importance. The instrument developed consisted of 43 questions which were tested with 259 patients. The fact, construct and concurrent validity of the questions is reported. The questions were further refined to reduce them to 20 questions suitable for use during the initial assessment by a member of any profession in the hospice/palliative care team. This brief instrument is compared to others used to measure quality of life.