Information needs in terminal illness
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.
Section snippets
Study design
This study utilized a multimethod approach. Qualitative interviews were initially conducted to identify and describe key themes. These data were then used to develop a semistructured instrument which was administered to a second sample of terminally ill patients.
Study setting
Subjects were referred by doctors, nurses and social workers from 10 sites in the Denver, CO metropolitan area and in a smaller community approximately 60 miles north of Denver. These sites included hospices, private physician offices,
Initial qualitative data
Thirty patients were referred for participation in the initial qualitative segment. Of these, eight did not meet eligibility criteria; two were unable to participate due to altered mental status, two had died between the time of the referral and the scheduled interview and four proved not to be terminally ill. Demographic characteristics for the 22 participants in the qualitative segment are shown in the first column of Table 1. We identified seven common areas of concern. In decreasing order
Discussion
We found that while disease-related issues, such as diagnosis, prognosis and treatment, are important to terminally ill individuals, illness-related issues, concerned with how the terminal disease affects the individual personally and socially, have equal if not more prominence among the themes important to this population. For the 17 of 37 those issues where there was sufficient response variation, few significant associations were found between easily-identifiable patient characteristics and
Conclusions
This mixed methodology study allowed categorization of the variety of potentially important issues for terminally ill patients, finding that these individuals have needs and concerns which reflect both disease- and illness-related themes. In this population, few, if any, patient characteristics predicted who may or may not be interested in a wide range of topics. The issues elucidated by this study may serve as probes for discussion between patients and physicians, prompting the physician to
Acknowledgements
JSK was supported in part by National Research Service Award (NRSA) number 5T32PE10006 from Health Resources and Service Administration (HRSA), Bureau of Health Professions. We wish to thank Susan Drake, MD and Eliz Albritton-MacDonald for assistance with the interviews. We are indebted to the Hospice of Larimer County, the Hospice of Metro Denver, Community Hospice, the Hospice of St. John, Peter Peterson MD, Mike Tartaglia RN and the Denver VA Medical Center and Nursing Home, Fitzsimons Army
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