Hope, Truth, and Preparing for Death: Perspectives of Surrogate Decision Makers

Context Physicians caring for critically ill patients are often reluctant to discuss poor prognoses with family members. Contribution Family members interviewed in this study believed that physicians should not withhold information about poor prognosis as a way of preserving their hope. Caution The study did not assess psychological outcomes of family members who did and did not receive the prognostic information they said they wanted. Implication Physicians should not withhold information about poor prognosis solely to preserve family members' hope. The Editors Discussing prognosis is a challenging task for physicians, both because the news of a poor prognosis is emotionally difficult (1) and also because there is considerable prognostic uncertainty for many illnesses and for most individual, seriously ill patients (2). Physicians often rely on clinical experience and judgment in formulating prognostic estimates (3). Previous research suggests that 90% of physicians are reluctant to provide specific prognostic information, 75% shade their prognostic estimates to be more optimistic than they believe are true, and 44% wait to be asked before discussing prognosis (1, 4). Research on audiotaped clinicianfamily conferences in intensive care units confirms that physicians frequently omit important prognostic information from discussions or use vague language when discussing prognosis (3, 5). Christakis (6) found that 1 reason for physicians' reluctance is a concern that their words may extinguish patients' and families' sense of hope; these physicians perceive the act of nondisclosure to be a humane attempt to minimize suffering. When patients are suddenly incapacitated by severe illness, physicians turn to surrogate decision makers for guidance about setting goals of care and making decisions to limit life-sustaining treatment (7, 8). Families report that the surrogate decision-making process is often problematic and poses substantial emotional burdens (912). Conflict about these decisions is common within families and between the family and the health care team (13, 14). Although several empirical studies in oncology have addressed the attitudes of patients on the topic of hope and telling the truth about prognosis (4, 1517), no studies have focused on the perspective of family members who act as surrogate decision makers. Specifically, it is unknown whether surrogates share physicians' perceptions that discussing a poor prognosis may extinguish hope. In addition, little is known about the ways that surrogates use prognostic information or why possessing such information might be important to them. These gaps in knowledge hinder the development of empirically derived interventions to improve surrogate decision making and the support of family members of patients who will probably die. We conducted this study to determine the attitudes of a diverse group of surrogate decision makers toward balancing hope and telling the truth in the care of seriously ill patients at high risk for death. Methods Design, Patients, and Setting From January 2006 to October 2007, we conducted face-to-face, semistructured interviews with surrogate decision makers in a prospectively defined cohort of critically ill patients at high risk for death in 4 intensive care units at the University of California, San Francisco, Medical Center, San Francisco, California. The intensive care units (ICUs) included 2 medicalsurgical ICUs, a neurologic ICU, and a cardiac ICU. Inclusion criteria for patients were age older than 18 years, respiratory failure requiring mechanical ventilation, lack of decision-making capacity, and an Acute Physiology and Chronic Health Evaluation II score greater than 25 (predicting in-hospital death of at least 40%). All interviews took place between days 3 and 5 of the patients' mechanical ventilation. Eligible participants were at least 18 years of age, spoke English well enough not to require the use of an interpreter, and were self-identified as a surrogate decision maker for the patient. If the responsibility for surrogate decision making was shared among family members, we enrolled those who self-reported having the most responsibility for decision making. Thus, more than 1 participant per patient could be enrolled. Study investigators identified eligible surrogates by screening daily in each ICU. Before approaching potential participants, we obtained permission from the patient's attending physician to do so. All participants provided written consent to participate in the study. The institutional review board at University of California, San Francisco, approved all study procedures. Surrogates who agreed to participate completed a demographic characteristic questionnaire and participated in a 30-minute, one-on-one, semistructured interview, which was audiotaped and then transcribed. The interview focused on surrogates' attitudes about discussing prognosis in ICUs. The current report focuses on their responses to the following prompt and question: Some physicians are reluctant to discuss news of a poor prognosis with family members of a critically ill patient because they do not want to take away the families' hope. Do you think physicians should avoid discussing prognosis in order to maintain hope? We began the interview with a closed-ended question to focus participants on the question of whether nondisclosure about prognosis is an acceptable way to maintain hope. The interviewer followed up participants' responses with open-ended questions to understand the reasons for their choice, pursued themes as they occurred, and sought clarification or elaboration as interviews progressed. All interviews were conducted by 1 interviewer who was trained in techniques of cognitive interviewing. As part of the iterative approach to data collection that is central to qualitative research, the content of the semistructured interview was expanded over time to pursue and clarify themes that emerged in previous interviews (1820). Qualitative Data Coding A medical transcriptionist transcribed the audiotaped interviews verbatim. We used constant comparative methods to inductively develop a framework to describe participants' attitudes about discussing prognosis. Constant comparative methods are a general methodology for inductively analyzing systematically gathered, qualitative data. The method is most useful when existing conceptual frameworks for the topics under study are inadequate (1820). To develop the preliminary coding scheme, 4 investigators independently coded a subset of transcripts line by line. We identified recurrent themes relating to surrogates' attitudes about disclosure of prognostic information and maintaining hope. As themes and concepts accumulated, we refined distinctions between concepts and then grouped similar concepts into conceptual categories. We developed these categories further by comparing across transcripts. All investigators collaborated on developing the preliminary framework and, through a series of investigator meetings, arrived at consensus on the final coding framework. We modified the framework iteratively during the study period as interviews yielded new insights. Reliability of the Coding Using the final coding framework, 2 investigators independently coded all 179 interviews by listening to the audiotapes and reading the transcripts. We blinded both coders to the demographic characteristics of the participants and to one another's coding. To assess intercoder reliability, we calculated a statistic on a random sample of 20% of the interviews. The average statistic for identifying individual themes within an interview was 0.86 (range, 0.71 to 1.00). A value greater than 0.8 represents excellent interrater reliability (21). The coders and the senior authors reviewed and resolved all discrepancies between coders through discussion. Validity of the Findings We used 2 techniques to ensure the validity of our findings (22, 23). First, we used a multidisciplinary team to develop the coding framework. Areas of investigator expertise included critical care medicine, bioethics, sociology, general internal medicine, physicianpatient communication, and end-of-life care. A multidisciplinary approach minimizes the chance that individual bias threatens the validity of the findings. Second, we presented the preliminary conceptual framework to a sample of study participants for confirmation or modification, a process known as member checking (23). We incorporated these insights into the final organizing framework for the data. Role of the Funding Source This project was supported by a National Institutes of Health grant (KL2 RR024130) from the National Center for Research Resources, a component of the National Institutes of Health Roadmap for Medical Research and the University of California Student Research Fellowship. The funding sources had no involvement in study design, analysis, or interpretation or in the decision to submit the manuscript for publication. Results Among 183 eligible patients, the families of 19 (10%) were not approached at the request of the attending physician and 22 (12%) families declined to participate after learning about the study (Figure). The overall enrollment rate was 78%. In some cases, a family indicated that more than 1 individual would be involved in surrogate decision making, and therefore we enrolled 2 surrogates each for 23 patients and 3 surrogates each for 7 patients. Figure. Study flow diagram. Table 1 shows the demographic characteristics of the surrogate decision makers and patients who participated in the study. Eighty-two percent of the surrogates were immediate family members of the ICU patients. The sample was diverse in terms of sex, race/ethnicity, religious affiliation, and level of education. Forty-five percent of patients died during hospitalization (64 of 142). Table 1. Demographic Characteristics of Patients and Surrogate Decision Makers Overall, 93% (1