Information needs in terminal illness

Despite evidence that doctor-patient communication affects important patien t outcomes, patient expectations are often not met. Communication is especi ally important in terminal illness, when the appropriate course of action m ay depend more on patient values than on medical dogma. We sought to descri be the issues important to terminally ill patients receiving palliative car e and to determine whether patient characteristics influence the needs of t hese patients. We utilized a multimethod approach, first conducting intervi ews with 22 terminally ill individuals, then using these data to develop a more structured instrument which was administered to a second population of 56 terminally ill patients. Patient needs and concerns were described and associations between patient characteristics and issues of importance were evaluated. Seven key issues were identified in the initial interviews: chan ge in functional status or activity level; role change; symptoms, especiall y pain; stress of the illness on family members; loss of control; financial burden and conflict between wanting to know what is going on and fearing b ad news. Overall, respondent needs were both disease- and illness-oriented. Few easily identifiable patient characteristics were associated with expre ssed concerns or needs, suggesting that physicians need to individually ass ess patient needs. Terminally ill patients receiving palliative care had ne eds that were broad in scope. Given that few patient characteristics predic ted responses, and that the majority opinion may not accurately reflect tha t of an individual patient, health care providers must be aware of the dive rse concerns among this population and individualize assessment of each pat ient's needs and expectations. (C) 1999 Elsevier Science Ltd. All rights re served.