Information needs in terminal illness

Abstract

Despite evidence that doctor–patient communication affects important patient outcomes, patient expectations are often not met. Communication is especially important in terminal illness, when the appropriate course of action may depend more on patient values than on medical dogma. We sought to describe the issues important to terminally ill patients receiving palliative care and to determine whether patient characteristics influence the needs of these patients. We utilized a multimethod approach, first conducting interviews 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: change in functional status or activity level; role change; symptoms, especially 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 bad news. Overall, respondent needs were both disease- and illness-oriented. Few easily identifiable patient characteristics were associated with expressed concerns or needs, suggesting that physicians need to individually assess patient needs. Terminally ill patients receiving palliative care had needs that were broad in scope. Given that few patient characteristics predicted responses, and that the majority opinion may not accurately reflect that of an individual patient, health care providers must be aware of the diverse concerns among this population and individualize assessment of each patient's needs and expectations.

Introduction

The doctor–patient relationship is complex, involving interactions between individuals in nonequal positions. It is often nonvoluntary, concerns vitally important and intensely personal issues and requires close cooperation (Ong et al., 1995). Doctor–patient communication influences patient behavior and outcomes, including satisfaction with care, physiologic and functional measures of health status and adherence with treatment regimens Freidin et al., 1980, Robbins et al., 1993, Greene et al., 1994, Kravitz et al., 1994, Sanchez-Menegay and Stalder, 1994, Stewart, 1995, Ong et al., 1995. Increased patient satisfaction, in turn, is linked with decreased frequency of `doctor-shopping', increased compliance, and decreased malpractice litigation Rubin et al., 1993, Anderson and Zimmerman, 1993, Hickson et al., 1994, Levinson, 1994, Greene et al., 1994. Improved communication may help decrease consumer-driven health care costs (Kravitz et al., 1994).

Despite evidence that communication affects important patient outcomes, patient expectations are often not met and patients are frequently dissatisfied with the information they receive Kravitz et al., 1994, Ong et al., 1995. Communication difficulties have been ascribed to ``a lack of patient involvement in the discussion or the inadequate provision of information to the patient'' (Stewart, 1995). Discrepancies between the patient and physician in knowledge, values, expectations or goals can interfere with effective communication (Kleinman et al., 1978). Physicians and patients may enter into the clinical encounter with very different expectations. Negotiations occur which are based on assumptions about the clinical encounter itself. What needs to be discussed, what might be discussed, what should be discussed and what ought to be kept silent are issues that require negotiation between the patient and the physician.

Communication is especially important and may be particularly difficult in the case of life-threatening illness Ong et al., 1995, Lo et al., 1986. When facing a life-threatening illness, the medical encounter may become the hub of existence for the ill individual. The distinction between `disease' and `illness' may become especially prominent as a disease reaches its terminal stages. Disease, as defined medically, is a malfunctioning or maladaption of the biologic and psychophysiologic processes in an individual. In contrast, illness, in the domain of the patient, comprises personal, interpersonal and cultural reactions to disease and is embedded in a ``complex family, social and cultural nexus'' (Kleinman et al., 1978). A patient's knowledge of and reactions to disease, his or her illness experience, will determine his or her needs and concerns at a particular point in time. These needs and concerns may not be easily predicted by the health professional who is functioning within a `disease' framework. Clinicians, due to their education and prior experience, may find ways to routinize activities, encounters and issues which are new and may loom large in the considerations of terminally ill patients and their families. In a terminal illness, the appropriate course of action may rely much more on patient preferences and values than on medical dogma.

To date, there have been few studies of the needs of patients along the trajectory of a terminal illness. Cassileth et al. (1980) studied the information and participation needs of ambulatory cancer patients, finding that the majority of patients wanted as much detailed information as possible. Patients wanted to be informed about their treatment and their disease, and a majority preferred to participate in decision making. Silverstein et al. (1991) examined the wishes of ambulatory patients with amyotrophic lateral sclerosis for information, participation in decision making, and life-sustaining therapy: the majority of these patients wanted as much information as possible about their disease. A study of breast cancer patients concluded that there was a direct relationship between patient preferences for involvement in treatment decision making and preferences for treatment-related information (Hack et al., 1994).

Despite evidence that doctor–patient communication affects important patient behaviors and outcomes, and may be especially important at the end of life, little is known about (1) what specific types of information terminally ill patients find helpful or (2) what factors influence the expressed needs of individual terminally ill patients. We conducted an interview-based study of terminally ill individuals who were receiving palliative care. Our primary objective was to describe the information needs of this population. Our secondary objective was to determine whether patient characteristics such as age, educational level, diagnosis, functional status or participation in hospice influence these needs.