From coping with life to coping with death: problematic integration for the seriously ill elderly.

Decisions made by and for elderly patients nearing death frequently perpetuate unwanted suffering and dependence. This article extends the argument that Babrow's (1992, 1995) problematic integration theory can provide insights into why communication fails to produce desired outcomes for such patients. Open-ended responses obtained in face-to-face interviews with 142 elderly dialysis patients and mailed surveys of 393 dialysis unit nurses were examined to better understand how patients and nurses reconciled incompatible probabilistic and evaluativejudgments. Results indicate that patients seek information that will enable them to cope with debilitating dialysis treatments rather than information nurses believe is necessary for them to make informed choices about whether to undergo such treatments. The tension between the information patients want to successfully cope with life and the information they need to decide intelligently about treatments that forestall death constitutes a key reason why communication about end-of-life issues is frequently flawed. Our analysis of these communication flaws leads to specific recommendations for how this tension can be eased, which in turn may better prepare patients to make the transition from coping with life to coping with death.

Improving advance care planning by accommodating family preferences.

CONTEXT: Family members often lack the knowledge of patients' values and preferences needed to function well as surrogate decision-makers. OBJECTIVE: To determine whether differences in values and preferences for the advance care planning process may be reasons family members are inadequately informed to act as surrogates. DESIGN: Face-to-face and telephone surveys using structured questionnaires. PARTICIPANTS: Two hundred forty-two pairs of dialysis patients and their designated surrogates. MAIN OUTCOME MEASURES: Content and number of end-of-life care discussions; patient and surrogate attitudes toward having patients express preferences explicitly; factors most important to surrogates in decision making; and within-pair agreement about the values of suffering and certainty. RESULTS: Ninety percent of patients designated a family member as their surrogate. In most cases, having more conversations about end-of-life issues did not increase surrogate knowledge of patients' values or preferences. Surrogates wanted written and oral instructions more often than patients wanted to provide them (62% vs. 39%, p < 0.001). Knowing the patient's wish to stop treatment in the present condition was more important to most surrogates than the physician's recommendation to stop treatment (62% vs. 45%, p < 0.001). Compared to patients, surrogates were less likely to want to prolong the patient's life if it entailed suffering (12% vs. 23%, p < 0.01) and were more concerned about being certain before stopping life-sustaining treatments (85% vs. 77%, p < 0.02). CONCLUSIONS: Differences in preferences for the advance care planning process between patients and their surrogates and failure to discuss specific end-of-life values and preferences may explain why surrogates often lack information needed to serve as surrogate decision-makers.

From "reducing" to "coping with" uncertainty: reconceptualizing the central challenge in breast self-exams.

An ideology of uncertainty reduction pervades scholarly and popular discourse on breast self-exams (BSE). Women are encouraged to understand BSE as an activity that reduces uncertainty about their health. Moreover, uncertainties about the procedure itself are conceived as barriers to BSE. In turn, reducing these uncertainties is seen as the key to promoting BSE. We argue that the ideology of uncertainty reduction is both descriptively and prescriptively inadequate and potentially a threat to women's health. We further contend the ideology should be replaced by a framework that illuminates processes of coping with uncertainty. Several major characteristics of such a framework, as well as implications for medical practice, are discussed and illustrated within the context of BSE.

Dialysis patients' preferences for family-based advance care planning.

BACKGROUND: Most patients do not participate in advance care planning with physicians. OBJECTIVE: To examine patients' preferences for involving their physicians and families in advance care planning. DESIGN: Face-to-face interviews with randomly selected patients. SETTING: Community-based dialysis units in one rural and one urban region. PARTICIPANTS: 400 hemodialysis patients. MEASUREMENTS: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care. RESULTS: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). CONCLUSION: Most patients want to include their families more than their physicians in advance care planning.

Failure of advance care planning to elicit patients' preferences for withdrawal from dialysis.

Although withdrawal from dialysis is relatively common among dialysis patients, little is known about the patients' consideration of withdrawal during advance care planning. We studied a stratified random sample of 400 hemodialysis patients in two geographic areas (all six dialysis units within 75 miles of Morgantown, WV, and all nine dialysis units in Rochester, NY) by reviewing responses to a questionnaire addressing issues of advance care planning. Interviews were performed by trained interviewers during a routine hemodialysis treatment. Fifty-one percent of the patients had completed an advance directive (29% had a living will and a health care proxy, 22% had a living will or proxy). Patients who had completed advance directives were more likely to have notified their decision makers of their roles (91% with a living will and health care proxy, 81% with a living will or proxy v 55% who had no advance directive; P < 0.01). Most patients had not discussed their wishes for specific interventions in the event of permanent coma: 41% had discussed mechanical ventilation; 35%, tube feedings; 25%, cardiopulmonary resuscitation; and only 18% had discussed stopping dialysis. Patients who had completed a living will and proxy were most likely to have discussed end-of-life care, but stopping dialysis was the least often discussed intervention, even in this patient subset. Sixty-nine percent had discussed mechanical ventilation; 55%, tube feedings; 43%, cardiopulmonary resuscitation; and only 31% had discussed stopping dialysis (all P < 0.001). Although withdrawal from dialysis is relatively common, it is rarely discussed in advance care planning by dialysis patients. Dialysis unit staff and nephrologists should address issues involving withdrawal from dialysis with their chronic dialysis patients.

The many meanings of uncertainty in illness: toward a systematic accounting.

Uncertainty is widely believed to be a central feature in illness experiences. Moreover, communication is thought to be essential to the construction, management, and resolution of uncertainty. Not surprisingly, however, there are substantial variations in conceptions and analyses of this focal construct and its relation to communication. In this article, we first argue that understandings of the role of communication in health and illness can be improved substantially--thereby enhancing both theory development and practical applications of health communication theory--by recognizing and reconciling sources of variation in conceptions of uncertainty and by synthesizing various specific conceptions. We then review individual-psychological models. linguistic and discourse analyses, and sociocultural and historical perspectives on uncertainty in illness Following the review, we present a framework that synthesizes many conceptions of uncertainty We close with a discussion of 5 challenges and opportunities for research and application.

Smoking cessation interventions for university students: recruitment and program design considerations based on social marketing theory.

BACKGROUND: Audience variables with social marketing implications for university campuses were investigated to identify prepromotional campaign strategies for the design of smoking cessation interventions and for subject recruitment. METHODS: A first survey based on a stratified systematic probability sample of 2,998 college students at a large midwestern university identified 313 smokers. A total of 263 (response rate = 84%) participated in a second telephone survey, and results were based on the 193 (73%) respondents who still smoked. RESULTS: Recruitment implications indicate that potential participants are predominantly lower classmen in their early 20s who are unmarried, childless, white, full-time domestic students. Smoking habits are moderate but well-established and confined almost exclusively to cigarette smoking. An average of three attempts to quit smoking was reported, and the majority of respondents rated their interest and intention to quit as "somewhat" to "very likely." The best publicity options for programs are campus newspapers as well as grocery stores and gas stations, where most cigarettes are purchased. Program design implications suggest that accessibility, affordability, convenience, flexibility, social support, and behavioral prompts/cues are important factors to consider. CONCLUSIONS: This study is a first initiative to "fill the gap" in the social marketing research literature by providing recruitment and program design information specifically for developing a smoking cessation campaign for university campuses.

Identification of campaign recruitment strategies for a stepped smoking cessation intervention for a college campus.

A rapproachement of the Stepped Approach Model of health care delivery and Ajzen's Theory of Planned Behavior was used to identify campaign recruitment strategies for a stepped smoking cessation intervention for a college campus. The study examines outcome expectancies, outcome evaluations, and interest in participating in smoking cessation programs presented in graduated steps of intervention intensity. Telephone surveys were conducted with a probability sample of 191 student smokers. A significant negative trend indicates that the steps are ordered cost-effectively. Scheffé a posteriori tests also reveal that interest in Step 1 (pamphlets and brochures) was significantly higher than interest in any other step, including those representing traditional health care services (i.e., groups and individual treatments). The two strongest predictors of interest in each step were attitudes about participation and control beliefs; normative expectations about program participation discriminated between respondents with high or low interest in Steps 2 through 5. It was concluded that attitudes and control beliefs should be the focus of initial program promotion for college smoking cessation campaigns. Emphasis on attitudes, control beliefs, and especially perceived norms could be helpful in advancing unsuccessful participants to the next more intensive program in a stepped intervention.