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Communication of Prognostic Information for Critically Ill Patients^*

^* From the Division of Pulmonary, Allergy and Critical Care Medicine (Drs. LeClaire and Weinert), School of Medicine; and Division of Epidemiology (Dr. Oakes), School of Public Health, University of Minnesota, Minneapolis, MN.

Correspondence to: Michele LeClaire, MD, MS, MMC 276, 420 Delaware St SE, Minneapolis, MN 55455; e-mail: lecla003{at}umn.edu

	Abstract

TOP Abstract Introduction Materials and Methods Results Discussion References

 
Study objectives: The purpose of this study was to determine whether the timing of prognostic information delivery by physicians is associated with caregiver satisfaction with communication or decision making in the ICU.

Design: Multicenter, prospective, longitudinal observational study.

Setting: Medical and surgical ICUs in a community and university hospital.

Participants: Decision makers for critically ill patients.

Measurements and results: Longitudinal surveys assessed both actual and desired frequency of communication with physicians, timing and content of physician prognosis, and subject satisfaction with physician communication and subject’s role in decision making. Seventy subjects were enrolled and completed 216 surveys. Fifty-seven caregivers (81%) received prognostic information during the ICU stay, with a mean time between ICU admission and provision of prognostic information (prognostic interval) of 1.7 ± 2.8 days (median, 1 day). This interval was not associated with patient age, severity of illness, clinical service, hospital, socioeconomic status, or prior patient ICU admission. A shorter prognostic interval was associated with increased satisfaction with communication, with a trend toward statistical significance (p = 0.06). Both the measured communication rate (p < 0.001) and subjects’ desired communication rate with physicians decreased over time in the ICU (p < 0.001). Although 78% of subjects rated their overall satisfaction with frequency of communication as "good," "very good," or "excellent," their satisfaction with communication frequency decreased with time in the ICU (p = 0.006).

Conclusions: Families of critically ill patients were generally satisfied with communication in the ICU; however, 19% were unable to recall receiving any prognostic information from physicians. Providing all decision makers with some prognostic information, even if it consists of a statement of uncertainty (as was commonly done in this study), may further improve satisfaction with ICU care. A widening gap between the actual and desired communication rate may result in a decline in communication satisfaction over the course of the ICU stay. This suggests that the capacity of physicians and other ICU personnel to manage families’ communication expectations may positively influence caregiver satisfaction.

Key Words: communication • critical care • end of life • family satisfaction • ICU • prognosis

	Introduction

TOP Abstract Introduction Materials and Methods Results Discussion References

 
Ninety percent of deaths in the ICU involve withdrawing or withholding care, but < 5% of critically ill patients are able to participate in the decision-making process leading to treatment limitation.¹ Families consistently report communication with physicians as one of the most important aspects of care.²³⁴⁵ In a recent study, nearly 50% of families recalled conflict during treatment limitation discussions but the conflict was more likely to be about issues of communication and professionalism rather than decision about withdrawing or withholding care.⁶ In another study of family members of critically ill patients, 70% of respondents were either "completely" or "very satisfied" with the decision-making process, and 66% percent rated the communication frequency with ICU physicians to be "excellent" or "very good."⁷ A multicenter Canadian study of family satisfaction in the ICU found family satisfaction to be very high, but one of the dimensions families were least satisfied with was communication frequency with physicians.⁸

Families have provided some details about their desires related to communication. Investigators have analyzed communication content and show that families desire timely information about prognosis ("to be honest about poor prognosis as soon as possible"), to receive frequent communications of small amounts of information, and to facilitate consensus by focusing on what the patient would want.⁹ Families have higher satisfaction with family conferences when they are allowed to speak more.¹⁰ Although investigators have conducted studies of "proactive ethics consults"¹¹¹² and proactive intensive communication interventions,¹³¹⁴ there are no natural history studies that have quantified "timely" or "frequent," and it is unknown whether the timing of prognosis delivery affects family satisfaction with physician communication.

It is also unclear if timing of prognostic delivery influences the decision-making process. According to Prendergast and Luce,¹ when care limitation was recommended, 61% of families agreed immediately, 27% agreed within 48 h, and 5% took > 5 days. It is conceivable that this interval can be further decreased by changing the timing of prognostic information delivery.

Our study objective was to determine the extent to which timing of prognostic information delivery influenced satisfaction and decision making. We also wished to determine the congruity between surrogates’ desired frequency of communication and the actual frequency. A secondary objective was to determine whether surrogates’ comprehension of substituted judgment, a core ethical concept familiar to physicians caring for mentally incompetent patients, was associated with decision-making satisfaction.

	Materials and Methods

TOP Abstract Introduction Materials and Methods Results Discussion References

 
Subjects were surrogate decision makers (health care power of attorney, legal next of kin, or closest legal or chosen family member) of patients in the Medical or Surgical ICU at Fairview University Medical Center (FUMC) or Methodist Hospital. FUMC is the primary teaching hospital of the University of Minnesota with 33 registered nurse-staffed, adult ICU beds with medical care delivered by a "closed-unit" medical or surgical intensivist program. Methodist Hospital is a private hospital of the Park-Nicollet Health Care System with 22 registered nurse-staffed, adult ICU beds with medical care delivered by family practitioners, surgeons, and internists including medicine critical care trainee fellows under the supervision of private practice intensivists. Because this was a study about communication and decision making, we chose consecutive patients who were expected to require at least 3 days of ICU care. After identification of the most appropriate proxy, this person completed all subsequent surveys. We excluded patients without an apparent decision maker, surrogates who were non-English speaking, or subjects with impaired cognitive function. Human Subjects Protection Boards at both institutions approved the study, which enrolled subjects between July 2003 and December 2003.

All subjects completed an initial survey as soon as possible after enrollment to collect patient and proxy demographics and the timing and content of prognostic information already provided to them. Subsequent, brief surveys occurred every 3 to 4 days until care was limited, the patient was transferred out of ICU, or the patient died. Surrogates noted on the survey when and from whom prognostic information was delivered. Prognostic information was defined in the questionnaire as "statements of expected course of illness, prospect of survival or recovery, or statements of uncertainty about the future." Time elapsed between the ICU admission date and the subjects’ recollection of the date of the first provision of prognostic information by a physician at any level of training was defined as the prognostic interval.

We reviewed medical charts to estimate severity of illness using the APACHE (acute physiology and chronic health evaluation) II score using clinical variables from the first 48 h in the ICU.¹⁵ We also collected information about the disease category, clinical service (six categories subsequently collapsed into medicine vs surgery for analysis), physician specialty, presence of a living will, and caregiver educational level as prior work has suggested that these factors may influence health-care communication.^{16171819202122} Additionally, we asked subjects if they or a close relative had "knowledge about healthcare in the ICU," or if the patient had been in the ICU before. A follow-up survey of surrogate satisfaction with communication and decision making was mailed to surrogates’ homes 2 to 4 weeks after ICU discharge.

The surveys were constructed based on previously validated instruments developed by Heyland et al.⁷ We used five-level (poor, fair, good, very good, and excellent) satisfaction scales regarding communication, which were subdivided into satisfaction with communication frequency, completeness of information, honesty of information, consistency of information, and the subject’s comprehension of information. We aggregated responses into a summary score ranging from 5 to 25 for each follow-up survey. In our study, the communication satisfaction scale had a Cronbach of 0.90 indicating a high inter-item correlation suggesting the scale measures a single satisfaction construct. Subjects were also questioned about whether a physician had asked them to participate in major medical decisions for the patient. If they answered affirmatively, subsequent questions about whether a physician had described their role and scales for satisfaction with decision making were asked. Knowledge of the substituted judgment concept was measured for those subjects asked by their physicians to participate in major medical decisions. We defined a correct response as choosing the single item "Decisions were made based on my interpretation of what the patient would say if able to speak for him/herself" from a multiple-choice list. While this question has not been previously validated, it is based on the ethical construct of proxy decision making.²³

Statistical Analysis
The primary end point was the number of ICU days before provision of prognostic information to the proxy by a physician at any level of training (ie, the prognostic interval). Secondary end points were surrogate satisfaction with communication and decision making. No honest prospective power calculation was possible as the variance of measurements was unknown.²⁴²⁵ Therefore, our sample size was based on feasibility and budget. All statistical tests were two sided with = 0.05. Statistical software was used for analysis (SPSS version 12; SPSS; Chicago, IL) was used for analysis. We used Cox regression with block entry of eight covariates to define characteristics associated with the prognostic interval. Mixed-model regression was used for longitudinal analysis (eg, change in satisfaction or desired frequency of communication over time), which adjusts the SE for the within-person correlation of variables measured serially from the same subject. Logistic regression tested whether the presence of a living will was associated with a surrogate understanding of substituted judgment. Ordinary least squares regression was used to discover factors associated with the rate of physician/subject communication to determine whether demographic factors were associated with satisfaction, and to test the hypothesis that understanding substituted judgment was associated with higher satisfaction with decision making.

	Results

TOP Abstract Introduction Materials and Methods Results Discussion References

 
Baseline descriptive statistics of the patients and subjects are in Table 1 . The majority of the subjects were white and well educated, and we were able to recruit subjects from both Methodist Hospital (a community hospital) and FUMC (an academic hospital). Patients were severely ill with a mean APACHE II score of 25, and nearly 40% died while in the ICU. Nearly 60% of the patients had been in an ICU at least once before.

Prognostic Interval
Eighty-one percent of the subjects reported receiving prognostic information from a physician at least once. The mean (± SD) prognostic interval was 1.7 ± 2.8 days (median, 1 day). The distribution of prognostic interval (Fig 1 ) shows the most frequent intervals were 0 or 1 days; that is, most subjects received some type of prognostic information on the day of ICU admission or the following day. A multivariate Cox model showed that none of the hypothesized baseline characteristics were associated with time to delivery of prognosis (Table 2 ).

View larger version (13K): [in this window] [in a new window] [Download PPT slide]   Figure 1. Bar chart of prognostic interval in days.

View larger version (14K): [in this window] [in a new window] [Download PPT slide]   Figure 2. Box plot of communication rate over follow-up interview number. The 0 category represents the communication rate from ICU admission to the day of completing the baseline survey.

Satisfaction
Subjects’ rating of satisfaction with communication was generally high, as shown in Table 4 . The mean global (summated five subscales) satisfaction was 18 ± 5 (median, 18; minimum, 5; maximum, 25). There was a strong positive association between higher global satisfaction and male gender, but not with age, education, or hospital (ß = – 0.44, p < 0.001). Global satisfaction had a declining trend as the ICU stay progressed (ß = – 0.079, p = 0.07; 149 observations, 70 subjects). Additionally, satisfaction with communication frequency decreased significantly over the ICU stay (ß = – 0.34, p = 0.006; 147 observations, 70 subjects). Likewise, increased communication frequency was strongly positively associated with increased satisfaction with communication overall (ß = 0.73, p < 0.001; 149 observations, 70 subjects). Regressing the prognostic interval on post-ICU satisfaction showed a trend toward an association between shorter prognostic interval and greater post-ICU satisfaction (ß = – 0.52, p = 0.06, n = 51).

Subjects who were asked by their physicians to make medical decisions were surveyed after the ICU stay about satisfaction with decision making. Table 5 shows that the majority of subjects were mostly to very satisfied with important aspects of decision making. Higher satisfaction with decision making was not associated with either prognostic interval (ß = 0.61, p = 0.73, n = 50) or average rate of communication (ß = 0.07, p = 0.55, n = 53). In addition, correctly identifying the substituted judgment concept was not associated with post-ICU satisfaction with decision making (ß = – 0.37, p = 0.17, n = 50).

	Discussion

TOP Abstract Introduction Materials and Methods Results Discussion References

Even though 81% of the subjects received prognostic information, 19% reported never receiving prognostic information despite their loved one’s severe illness. Truth telling and informed consent are important values in the physician/patient (or surrogate) relationship, and interventions to provide "early" structured communication have demonstrated benefit such as shorter length of ICU stay.^11121314 Our results suggest that physicians should provide some prognostic information to all families, even if it consists of acknowledgment of uncertainty (as was commonly done in this study).

We found both reported and desired frequency of communication decreased with time in the ICU but that the actual communication rate decreased faster than the desired communication rate. These rates of communication have not been described in previous studies. This "gap" between desired and actual frequency of communication represents an opportunity for improvement by either managing family expectations or increasing physician communication frequency. Our finding that less frequent communication correlated with lower satisfaction with communication frequency may clarify prior work that found conflict between family members and physicians often centered on communication.⁶ Further research should examine if surrogate satisfaction with communication is related to prolongation of patients’ lives in undesirable states.

Seventy-eight percent of the subjects reported making major medical decisions (eg, withdrawing or withholding vs aggressive medical care) for the patient. Only 53% of those asked to make decisions were able to correctly identify the current legal and ethical ideal of surrogacy. Many of our subjects reported having knowledge of health-care issues and had been through previous ICU stays. It is conceivable that families with less experience would have even been less likely to correctly identify substituted judgment. This finding has not been previously described and indicates that while the concepts of patient autonomy and surrogacy for decision making are familiar to physicians, these concepts do not appear to be understood by many patients and their families. There is evidence that explicitly asking decision makers to use substituted judgment as opposed to making their best recommendation yields decisions more congruent with those of the patient.²⁶ We did not find an association between having an understanding of substituted judgment and satisfaction with decision making as would have been expected from previous qualitative data.⁹²² Nevertheless, caregivers might believe that surrogate satisfaction is not as important as ensuring that decisions are arrived at in an ethical manner.

There are limitations to this study. First, only a single family member was recruited to participate and, as the information was collected only from the subject’s perspective, the data are subject to bias in recall, misinterpretation of multiple discussions over time and by different physicians, and the limitations of necessarily brief questionnaires. Subjects were surveyed at several-day intervals to minimize respondent burden, and while these intervals may not have exactly corresponded with important communication and decision-making events in the course of the ICU stay, a follow-up survey would have occurred within just a few days our study design of serial assessments over the ICU stay is likely to have substantially less recall bias than prior studies that used only a single post-ICU survey. Additionally, subject satisfaction may have relied on their ability to comprehend information provided by the physician, which is difficult to measure without ascertaining what information was exchanged during each communication event.

Both subjects and physicians knew about the conduct of this study that may have influenced behavior. For example, subjects in the study may have been more likely to ask physicians about prognostic information. However, most had already received prognostic information at enrollment. Changing physicians’ communication practice is difficult, however, so it is unlikely that an observational study conducted over just 6 months in three ICUs and two hospitals would substantially affect subject/physician communication.

Additionally, there may be some difficulty generalizing these results to other ICUs. This study was conducted in an open unit at Methodist Hospital and a closed unit at FUMC. Carson et al²⁷ examined patient and family perceptions about decision making and access to information in an academic hospital before and after the unit adopted a "closed" model of care. There was not a measurable difference in decision making, but families did report they found it easier to identify a physician to communicate in the closed ICU format. Future studies may help to determine whether communication is facilitated in open- vs closed-unit designs.

Finally, attitudes and behaviors are often difficult to measure and are determined by numerous factors. Although surrogates completed 216 surveys, we acknowledge that some of the multivariate analyses are underpowered, and we caution readers that our inability to statistically reject some null hypotheses may be due to a type II error.

In conclusion, this study has shown that the frequency of physicians’ communication with family members and the content of those communications (ie, prognosis) influences specific aspects of surrogate satisfaction and decision making in the ICU. Physicians should be aware that family expectations for communication frequency in the ICU may not match the reality of time management for physicians caring for critically ill patients. Solutions to this problem will likely require collaboration between physicians and other members of the ICU team. This will include attention to the interaction between providers, patients, and their surrogates, and environmental/institutional factors.⁸ One in five families reported not receiving prognostic information, which we believe is an unacceptably high proportion. Lastly, despite being asked by their physicians to make life-changing decisions for their loved one, nearly half of surrogates do not understand the concept of surrogate decision making. In order to improve the end-of-life process in the ICU, physicians need to be skilled communicators with decision makers for their patients. Much of the "basic science" of communication has still not been described and will need to be before meaningful interventions can be implemented to improve end-of-life decision making in the ICU.

	Acknowledgements

 
We thank Alexander Rothman, PhD, Department of Psychology, University of Minnesota for assistance with survey construction. We acknowledge assistance from Jeffrey Kahn, PhD, MPH, with study design and manuscript revision. We are grateful to Sue Ravenscraft, MD, Pulmonary, Sleep and Critical Care, Park Nicollet Clinic for her assistance with subject recruitment at Methodist Hospital.

	Footnotes

 
Abbreviations: APACHE = acute physiology and chronic health evaluation; CI = confidence interval; FUMC = Fairview University Medical Center

Received for publication November 12, 2004. Accepted for publication February 17, 2005.

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