How Much Do Surrogate Decision Makers Understand About The Care Their Loved Ones Are Receiving?
Abstract & Commentary
By Leslie A. Hoffman, PhD, RN, Department of Acute/Tertiary Care School of Nursing, University of Pittsburgh, is Associate Editor for Critical Care Alert.
Dr. Hoffman reports no financial relationship to this field of study.
Synopsis: Surrogate decision makers rated communication as good but could not answer questions about resuscitation status or the care their family member was receiving.
Source: Rodriguez RM, et al. Crit Care Med. 2008;36:1633-1636.
The Institute of Medicine has called for a patient centered model of care in which patients and families are kept informed about their care. Many ICU patients are unable to communicate and, therefore, family members are called upon for decision-making. In order to make reasonable, informed decisions, family members need to have a basic understanding of the care patients are receiving. This study reports the findings of 81 primary surrogate decision makers who were interviewed using a 29-item questionnaire that included items addressing their communication with staff, self-ratings of understanding of their family members' care, and "yes/no/do not know" questions about this care and resuscitation status. The respondents were 57.2 ± 16 years of age, 63% female; their racial distribution was 21% African American; 28% Asian; 21% Hispanic, 21% White and 8% undeclared. An interpreter was provided for the majority of those unable to understand English (7% wanted but did not get and 6% declined use of an interpreter).
Communication was rated as good (mean 8.6 ± 2.3 for nurses and 7.8 ± 2.89 for physicians on a 10 point scale). A minority of surrogates (19%) reported poor understanding of ICU care. However, almost half (47%) were judged to have poor understanding based on predetermined criteria (< 70% correct responses). There was no significant difference in understanding between those with (56%) and without (50%) a college education. However, more non-English speaking surrogates had poor understanding. The most commonly missed questions were "Is your family member receiving medication to support blood pressure?" "Is your family member receiving medication for pain or anxiety (drugs for sleep, to take away pain, to calm them)?" and "Is your family member on a ventilator (breathing machine)?" Of respondents, 15% incorrectly stated the resuscitation order and 11% did not know what this meant. Self-reported time spent in communication with staff was not associated with better understanding.
Commentary
Findings of this study are perplexing. Respondents related that they spoke with nurses (10%), physicians (4%) and nurses and physicians in combination (83%) regarding their family members' ICU care and condition. The time spent discussing patient issues was reported as 1-30 minutes by 41% of surrogates, 30 minutes to 1 hour by 26%, 1 to 2 hours by 15% and longer than this time by 14%. Relatively few reported no communication (4%). Interviews were conducted in person and the majority had hospital interpreters if they did not understand English. Those who conducted the interviews were medical or other students who received 6 hours training regarding the protocol and interviewing techniques. The respondents were relatively young and the majority had some college education. Nevertheless, they had difficulty answering simple questions about care management, such are being on a ventilator.
Although it is impractical and unnecessary for surrogate decision makers to fully understand all the care their family members receive, it would seem that those who participated in the interviews should have had better understanding. A basic understanding of the care provided is essential to making informed decisions about treatment options. Nevertheless, despite rating their comprehension as excellent and citing good communication with nurses and physicians, there were significant deficits in understanding. The data collection instrument appears relatively straight forward (http://sfghed.ucsf.edu/Research/ICU.pdf).
The authors suggest that, in addition to efforts to improve understanding through sharing information, staff should consider direct questioning to confirm understanding of basic elements of care. Discussion by physicians, nurses and respiratory therapists while at the patient's bedside can be an important vehicle for information sharing with families. Through examples shared in this manner, patients can acquire knowledge about the ventilator, monitoring parameters, laboratory values and treatments. With repetition, more information may be retained. In the present study, data were not gathered on the number of visits that surrogates had to the patient's bedside, the unit visitation policy, or educational materials available to families. These are potentially important means to increase information sharing and prompt questions from families. Findings of this study challenge critical care clinicians to provide information in a more understandable manner and include an assessment of comprehension in these interactions.
The Institute of Medicine has called for a patient centered model of care in which patients and families are kept informed about their care. Many ICU patients are unable to communicate and, therefore, family members are called upon for decision-making.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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