"It's Not Just What the Doctor Tells Me:" Factors that Influence Surrogate Decision-makers' Perceptions of Prognosis*

Elizabeth A. Boyd, PhD; Bernard Lo, MD; Leah R. Evans, Med; Grace Malvar, BA; Latifat Apatira, BA; John M. Luce, MD; Douglas B. White, MD, MAS

Disclosures

Crit Care Med. 2010;38(5):1270-1275. 

In This Article

Abstract and Introduction

Abstract

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 For some surrogates, these other sources of knowledge superseded the importance of the physician's prognostication.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.

Introduction

The majority of critically ill patients in intensive care units (ICUs) depend on surrogate decision-makers to make end-of-life decisions on their behalf.[1,2] To make informed choices, surrogates must have a clear understanding of the patient's diagnosis and likely prognosis. Despite the difficulty of these decisions and the ambivalence that many surrogate decision-makers report,[3] most surrogates wish to participate actively in treatment decisions,[4] view communication with physicians as one of the most important aspects of critical care,[5–7] and desire timely, honest discussions about prognosis with their loved one's physician.[2]

The complexities of physicians' prognostication have been well-described, most extensively by Christakis.[8] Previous research suggests that physicians typically base their prognostic estimates on previous experience caring for patients with similar disease, population-based survival estimates, and the physiologic status of the patient.[9–11] Other research has identified social interactional factors and physician attributes that may affect physicians' prognostications.[8,12] Physicians view the task of prognostication as one of the most difficult aspects of medicine.[8]

Although a number of studies have documented that surrogates' estimates of prognosis are often at odds with the physician's prognostic estimates,[13,14] comparatively little is known about how surrogates arrive at an understanding of the patient's prognosis. Most commentators have postulated that poor communication is the cause of physician–surrogate discordance over prognosis.[8,15,16] Our clinical experience has been that even with excellent communication, there sometimes remains a gap between the physician and surrogate about a patient's prognosis. This raises the possibility that physicians and surrogates may systematically differ in how they formulate prognostic estimates. It is crucial to understand this element of surrogate decision-making if we are to move forward in improving decision-making for critically ill patients. Therefore, we conducted semistructured interviews with surrogates of critically ill patients to determine how they arrive at their assessment of a patient's prognosis.

*See also p. 1381.

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