The majority of surrogates of patients that are critically ill want physicians to disclose their prognostic estimates even if they cannot be certain they are correct. This stems from surrogates' belief that prognostic uncertainty is simultaneously unavoidable and acceptable.
Objective Physicians and surrogate decision-makers for seriously ill patients often have different views of patients’ prognoses. We sought to understand what sources of knowledge surrogates rely on when estimating a patient’s prognosis. Design Prospective, mixed-methods study using face-to-face, semistructured interviews with surrogate decision-makers. Setting Four intensive care units at the University of California, San Francisco Medical Center in 2006 to 2007. Participants Participants were 179 surrogate decision-makers for 142 incapacitated, critically ill patients at high risk for death. Main Results Less than 2% (3 of 179) of surrogates reported that their beliefs about the patients’ prognoses hinged exclusively on prognostic information provided to them by physicians. The majority cited other factors in addition to physicians’ predictions that also contributed to their beliefs about the patients’ prognoses, including perceptions of the patient’s individual strength of character and will to live; the patient’s unique history of illness and survival; the surrogate’s own observations of the patient’s physical appearance; the surrogate’s belief that their presence at the bedside may improve the prognosis; and the surrogate’s optimism, intuition, and faith. For some surrogates, these other sources of knowledge superseded the importance of the physician’s prognostication. However, most surrogates endeavored to balance their own knowledge of the patient with physicians’ biomedical knowledge. Conclusions Surrogates use diverse types of knowledge when estimating their loved ones’ prognoses, including individualized attributes of the patient, such as their strength of character and life history, of which physicians may be unaware. Attention to these considerations may help clinicians identify and overcome disagreements about prognosis.
Background Although many physicians worry that openly discussing a poor prognosis will cause patients and families to lose hope, surrogate “decision makers’ perspectives on this topic are largely unknown. Objective To determine surrogate decision makers’ attitudes toward balancing hope and telling the truth when discussing prognosis. Design Prospective, mixed-methods cohort study. Setting 4 intensive care units at the University of California, San Francisco, Medical Center, San Francisco, California. Participants 179 surrogate decision makers for incapacitated patients at high risk for death. Measurements One-on-one, semistructured interviews with surrogates were conducted on the patients’ 5th day of receiving mechanical ventilation. Constant comparative methods were used to inductively develop a framework to describe participants’ responses. Validation methods included multidisciplinary analysis and member checking. Results Overall, 93% (166 of 179) of surrogates felt that avoiding discussions about prognosis is an unacceptable way to maintain hope. The main explanatory theme was that timely discussion of prognosis is essential to allow family members to prepare emotionally and logistically for the possibility of a patient’s death. Other themes that emerged included surrogates’ belief that an accurate understanding of a patient’s prognosis allows them to better support the patient and each other, a moral aversion to the idea of false hope, the perception that physicians have an obligation to discuss prognosis, and the notion that some surrogates look to physicians primarily for truth and seek hope elsewhere. A few surrogates (6 of 179) felt that physicians should withhold prognostic information because of a belief that discussing death could be emotionally damaging to the family or could negatively affect the patient’s health. Limitation The authors did not longitudinally assess whether early disclosure about prognosis predicts fewer adverse bereavement outcomes. Conclusion Most surrogates of critically ill patients do not view withholding prognostic information as an acceptable way to maintain hope, largely because timely discussions about prognosis help families begin to prepare emotionally, existentially, and practically for the possibility that a patient will die.
Rationale: Although there is a growing belief that physicians should routinely provide a recommendation to surrogates during deliberations about withdrawing life support, there is a paucity of empirical data on surrogates' perspectives on this topic. Objectives: To understand the attitudes of surrogate decision-makers toward receiving a physician's recommendation during deliberations about whether to limit life support for an incapacitated patient. Methods: We conducted a prospective, mixed methods study among 169 surrogate decision-makers for critically ill patients. Surrogates sequentially viewed two videos of simulated physician-surrogate discussions about whether to limit life support, which varied only by whether the physician gave a recommendation. Measurements and Main Results:The main quantitative outcome was whether surrogates preferred to receive a physicians' recommendation. Surrogates also participated in an in-depth, semistructured interview to explore the reasons for their preference. Fifty-six percent (95/169) of surrogates preferred to receive a recommendation, 42% (70/169) preferred not to receive a recommendation, and 2% (4/169) felt that both approaches were equally acceptable. We identified four main themes that explained surrogates' preferences, including surrogates' perceptions of physicians' appropriate role in life or death decisions and their perceptions of the positive or negative consequences of a recommendation on the physiciansurrogate relationship, on the decision-making process, and on long-term regret for the family. Conclusions: There is no consensus among surrogates about whether physicians should routinely provide a recommendation regarding life support decisions for incapacitated patients. These findings suggest that physicians should ask surrogates whether they wish to receive a recommendation regarding life support decisions and should be flexible in their approach to decision-making.
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