Recognizing, Naming, and Measuring a Family Intensive Care Unit Syndrome
Most major decisions in the intensive care unit (ICU) regarding goals of care are shared by clinicians and someone other than the patient. Multicenter clinical trials focusing on improved communication between clinicians and these surrogate decision makers have not reported consistently improved outcomes. We suggest that acquired maladaptive reasoning may contribute importantly to failure of the intervention strategies tested to date. Surrogate decision makers often suffer significant psychological morbidity in the form of stress, anxiety, depression, and post-traumatic stress disorder. Family members in the ICU also suffer cognitive blunting and sleep deprivation. Their decision-making abilities are eroded by anticipatory grief and cognitive biases, while personal and family conflicts further impact their decision making. We propose recognizing a family ICU syndrome to describe the morbidity and associated decision-making impairment experienced by many family members of patients with acute critical illness (in the ICU) and chronic critical illness (in the long-term, acute care hospital). Research rigorously using models of compromised decision making may help elucidate both mechanisms of impairment and targets for intervention. Better quantifying compromised decision making and its relationship to poor outcomes will allow us to formulate and advance useful techniques. The use of decision aids and improving ICU design may provide benefit now and in the near future. In measuring interventions targeting cognitive barriers, clinically significant outcomes, such as time to decision, should be considered. Statistical approaches, such as survival models and rank statistic testing, will increase our power to detect differences in our interventions.
Keywords: intensive care units, end of life care, life support care, communication, caregivers
As intensive care unit (ICU) physicians, we have come to recognize that our patients’ surrogates are our partners in the collaborative process of clinical decision making, particularly regarding major goals of care (1). We rely on them to know, understand, and try to explain the patients’ wishes through the harrowing process of making the most difficult decisions. The data—and our experience of days filled with multiple family meetings—indicate that the overwhelming majority of end-of-life decisions are made by someone other than the patient (2, 3). As ICU use at the end of life increases (4), these family meetings focusing on the end of life may increase in frequency.
Clinically, a reality often missed in thinking about the family meeting is this: decision making is hard on these surrogates. Yet, as our sophistication in considering patient and family needs and preferences has grown, so too has the opportunity for a nuanced discussion of this reality. Most family members in the ICU suffer clinically significant depression (5). High levels of anxiety are common (6–8). Stress levels are high (8). Symptoms of anxiety and depression can persist long after the ICU (9, 10). Family members involved in the decision-making process are more likely to develop post-traumatic stress disorder (9), a condition that may begin even before their loved one is discharged from the ICU (11). Conflicts between health care team members and families occur frequently (12, 13).
Every ICU practitioner has experienced family members or emotionally involved surrogate decision makers who, despite frequent meetings with what we think is open and effective communication, simply will not reach decisions regarding care of their loved one, particularly near the end of life. Although some of these families may be invoking their interpretation of religious tenets (14), many or most are not. They are seemingly paralyzed in determining goals of care. Some may be distrustful or unwilling to decide. However, we are overlooking another etiology: a proportion of our patients’ families, and their decision makers, are cognitively overwhelmed. They are unable to decide.
We suggest that this disconnect—between the extraordinary demands we place on surrogates, and the limits of what they can actually provide—helps explain one of the fundamental challenges of the communication literature: that many of our most promising interventions do not work when rigorously tested at large scale. We have an observational literature rife with promising associations between aspects of good communication and good outcomes. Rigorous testing of empirically grounded interventions has yielded promising single-center studies (15, 16), but is negative when increased in scale (17–20). These studies all focused primarily on the provider side of the equation, with interventions directed toward our own dissemination and eliciting of information. We have focused on the transmitter, not the receiver.
Recognizing a Syndrome of Maladaptive Thinking and Behavior among Family Members
The evidence in the ICU and across a variety of spectrums indicates that family members, under the burden of critical illness and the illnesses that predisposed their loved ones to the ICU, suffer serious cognitive deficits. Anticipatory grief is associated with worsened problem solving in family caregivers of patients with dementia (21). Among mothers of children with newly diagnosed cancer, 57% suffer worsened problem solving, correlating with neurotic symptoms (22). For the 44% of family caregivers of stroke patients who are depressed, their low problem-solving capabilities correlated with worse Beck depressive inventory scores (23).
Cognitive behavioral therapy has characterized a condition known as “learned helplessness” that results in maladaptive reasoning after stress a person is unable to relieve. The classic example is of a father whose child has incurable leukemia (24). As nothing the father does improves his child’s health, he gives up trying, begins to manifest helpless behavior, and becomes depressed and withdrawn. Disengagement from decision making is one of the main results of learned helplessness, a behavior seen frequently in the ICU (25). A validated measure of learned helplessness was used to assess 499 family members, including 184 surrogate decision makers. Among all family members, including decision makers, more than half suffered significant learned helplessness (8). Their learned helplessness was similar in magnitude to alcoholics entering 12-step programs and unemployed patients with multiple sclerosis. The disengagement from decision making arising from learned helplessness may play a role in the desire of some family members to withdraw from or take a passive role in the decision-making process (26–28).
Family Members of Patients in the ICU Report Being Sleepy and Sleep Deprived (29–31). Because sleep deprivation results in cognitive deficits (32–34), this further threatens surrogate decision making. When these sleep-associated deficits are quantified, the results are startling (35). More than one-half have Epworth sleepiness scores consistent with significant daytime sleepiness, more than two-thirds have Functional Outcome of Sleep Questionnaire-10 scores indicating impairment of daily activities, and 15% of family members and 12% of surrogates have blunted cognition, as measured by psychomotor vigilance testing, consistent with being intoxicated with a blood alcohol content of 0.05–0.10% (36).
Methodical observations that people’s choices often deviate from those based on desirability and utility are not new (37, 38). We see this in the ICU daily. Decision makers for chronically ventilated patients themselves acknowledge the startling gulf between their best judgment and their decisions as surrogates, evidenced by the divergence of their wishes for their own care and the care they choose for their loved ones (39). Patient-designated and next-of-kin surrogates often incorrectly predict end-of-life treatment preferences (40). Decision makers struggle with highly charged personal and family conflicts, not wanting to feel responsible for their loved one’s death, and wishing to avoid family conflict (41). Their decisions are filled with conflict and regret (42).
These deviations from rational decision making may emerge from cognitive bias, common among family members in the ICU. They frequently misinterpret prognoses, unable to overcome optimistic biases (43). This is consistent with studies outside of the ICU, in which people frequently manifest unrealistic optimism regarding possible life events (44), and these expectations can contribute to systematic errors in decision making (45). An additional potential source of cognitive deviation may arise from the base rate bias (also known as the base rate fallacy), in which people may ignore base rates and concentrate on individual information (46). For example, although a particular metastatic malignancy may have a well known median survival, the family member may ignore these data and concentrate instead on their loved one’s perceived hardiness and survival, rather than attempting to integrate the information. Mood, too, can change both the recall and judgment of one’s perception of others (47). This effect of emotion on processing is termed an encoding bias. Multiple studies suggest that individuals are unable to reconcile their current feelings and preferences to those they would have in a different predicament (48).
Affect plays a pivotal role in decision making (45). The importance of this body of literature to decision making in the ICU has begun to be recognized (49, 50). Families’ judgments and decisions are critically influenced by the emotions they experience. Emotions, such as anger and fear, impact decision making (51, 52), and can be a source of systematic bias and reckless behavior in decision making (53, 54), as they relate to cognitive processing. High-intensity affect can also overwhelm cognitive processing or eliminate deliberate decision making altogether (45), potentially explaining some families’ passivity in decision making. In addition, affect may errantly influence families’ determinations of the probability of positive and negative outcomes, perhaps a factor in the discordance between physician and family expectations of ICU outcomes (50, 55). As encouraging individuals to attribute their present emotions to judgment-irrelevant situational factors reduces the tendency for affect to inform judgment (56), helping families acknowledge the causes and focus of their present emotions before making decisions may be beneficial during family meetings. Admittedly, in the highly charged environment of the ICU, strategies aimed at reducing high-intensity affect may be limited (45).
Naming This Syndrome
We need to recognize that we face a syndrome of injured and impaired family members. We have already recognized such a syndrome after ICU discharge with the Family Response to Critical Illness, the Post–ICU Syndrome Family (57). We must be cognizant that morbidity begins for many family members as they walk through the doors of the ICU. The family response to acute critical illness is just as real. We propose recognizing a Family ICU Syndrome (FICUS), to describe this syndrome of morbidity and impairment among family members of patients with acute critical illness (in the ICU) and chronic critical illness (in the long-term acute care hospital; Figure 1). The time has come to dispense with the notion that family members are not our patients and look past this (58). Not only are family members the crucial component of end-of-life decision making, they are key determinants of how our surviving patients will fare in the disablement process, whether maintaining independence or having functional limitations become disabilities (59).
How Can We Better Study FICUS?
We are in the nascency of discovery, less than 2 decades after our realization that our communication with patients and their families at the end of life was inadequate (20). Giving a name to this syndrome will facilitate its study and characterization. Precisely defining it will be more difficult and require a multidisciplinary approach, including both healthcare and academic professionals. Some conditions, such as acute stress disorder, major depressive disorder, post-traumatic stress disorder, and complicated grief, are defined by the American Psychiatric Association’s Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (60), and have been previously incorporated into the working definition of the Post–ICU Syndrome Family (57). As such, the input of psychiatrists and psychologists will be essential in modeling the components of FICUS. Sleep medicine participation will be necessary to both characterize the extent of deficit as well as to design potential interventions to mitigate it. Nursing and social work will provide expertise in assessing family conflicts and their effects at the bedside. Defining and explicating cognitive barriers, including biases, maladaptive reasoning, and the effect of high-intensity emotion, will be more complex. Cognitive psychologists and behavioral economists have been studying and grappling with these issues for decades, working across methodological disciplines in doing so. Their intellectual structures, methods, and insights will be vital in developing a complete model of this syndrome. It is crucial that our efforts to delineate this syndrome be used for the benefit and well being of patients’ families to improve patient-centered care, and not usurp the central role of families in ICU decision making. The involvement of medical ethicists will be crucial in this regard.
As discussed previously here, mechanisms underlying cognitive compromise among decision makers are likely complex and multifactorial. We do not yet know exactly which model(s) are best suited to characterize them. Only research rigorously using models of compromised decision making will make this clear. Better quantifying compromised decision making and its relationship to poor outcomes will allow us to formulate and advance useful techniques. For example, the approach of the so-called problem solving intervention is built upon training cognitive appraisal and coping (61). Among caregivers of seriously ill (62, 63) and dying patients (64), this approach provides caregivers with coping skills, increases quality of life, and lowers anxiety. Applying this intervention to caregivers outside the ICU may even improve outcomes for the patients themselves (65). Might it offer similar benefits in the ICU? Other traditional cognitive behavioral theory approaches are labor and resource intensive, and may be difficult to implement in the ICU (66, 67); however, brief Web-based approaches may offer promise (68). Only careful and thoughtful research will determine which, or if any, of the cognitive–behavioral approaches will be effective in reaching this population.
In assessing the effectiveness of future interventions, we must advance our methodology and outcome metrics. Satisfaction is a common measure (69), but tells us little about the decision-making process and its impact on clinical care. From a patient- and family-centric perspective, a decisional conflict scale may tell us more about surrogates’ feelings regarding their choices (70). In addition to measuring patient-centered metrics, we must also evaluate objective clinical outcomes, to assess collaborative decision making with the health care team. Assessment of length of ICU stay and time on mechanical ventilation have previously been measured, but have limitations. These do not reflect the discrete amount of time eligible for intervention, which comes only after the recognition by the team of the need to direct care to comfort, and their communicating this to the family. This may comprise just a fraction of the total ICU length of stay. Including the entire length of stay erodes statistical power, as this decreases the relative effect size (71). This approach cannot distinguish between the death occurring 48 hours after a family meeting in which the decision maker opts for no further aggressive measures and the death that occurs with no limitations of care after 2 days. Time zero should be when the medical team deems limitations of care or changes in the goals of care appropriate, not ICU admission.
We have better statistical approaches—let’s use them. One example is the use of survival models, such as Cox proportional hazards model (72), assessing the time for decision makers to arrive at limitations of care. Survival analyses, including the Cox model, can reduce the number of subjects needed to detect a difference in therapies (73). Death without advance directives or consensus would be a competing outcome, using the statistical method of Fine and Gray (74). Another approach is rank statistic testing (75), which can capture and compare outcomes by desirability. In such an approach, consensus on the day of initial meeting would be the most desirable (i.e., Day 1 is ranked as “1”). Each day after this that is required to reach limitations of care/consensus would be less desirable (3 d until consensus = 3; 8 d until consensus = 8). Death without consensus or limitations on care would be the least desirable of all, and would be assigned a number such as 999. The distribution of these rankings would then be compared between the intervention and control arms. Not only does this approach capture the subtle gradations in outcomes from interventions, it also increases statistical efficiency markedly, and is less affected by extreme values (76).
What Do We Do Now?
Defining the FICUS is crucial, as it will allow identification of families in crisis and help the healthcare team direct treatments to ameliorate both its deleterious effects on decision making and the morbidity inflicted upon family members. Until we better understand mechanisms and treatments, we can start by simply acknowledging that the family member sitting with us is not only suffering great upheaval and turmoil, but may also be suffering from maladaptive reasoning and cognitive blunting. Doing so may reduce our countertransference associated with conflicts regarding end-of-life care, which are frequent and result in job strain (13).
We need to recognize just how complex the decision-making process is. Under dispassionate, controlled circumstances, it is clear that how we present choices impacts how people arrive at their decisions (77). As discussed previously here, multiple factors in the ICU superimpose on this milieu, making decision making even more problematic. We should recognize that we, as physicians, shape the decisions that these surrogates make. This is the case for the presentation of advanced directives to surrogates (78). Similarly, when patients with serious illness are shown end-of-life care options, they are more likely to choose comfort-oriented care when it is presented as a default choice (79). The use of decision aids may facilitate better decisions by pre-empting physician bias as well as patient barriers to effective decision making (80). This is possible in the ICU: a multicenter pilot study has evaluated the use of a decision aid incorporating graphic depictions of patients’ prognoses and case vignettes to illustrate decision options, along with prompts to assess surrogates’ preferences and understanding (81). Compared with controls, families enrolled in the intervention had lower rates of discordance with physicians, greater medical comprehension, and less decisional conflict. Hospital costs were also lower among the patients whose families participated. As our understanding of the FICUS increases, our knowledge will help refine best design for these decision aids, as well as their implementation.
ICUs need to be designed with families in mind. We know that dedicated meeting rooms reduce the anxiety of family members (82), and that families welcome open visitation policies (83). Current guidelines propose a “family support zone,” which can include foldout furniture for overnight guests (84). Given that sleep deprivation among families is well recognized (85), we should make explicit the need for rooms with a comfortable and clearly demarcated place for family members to sleep. Tertiary care centers should recognize that many of their patients’ families are far from home. These families may need a place to bathe themselves and to wash clothes.
As we build on this emerging foundational research, we can innovate and incorporate these early data and concepts into our practice. When rounding, we always try to remember how profoundly disempowering the ICU environment is to family members. We leave doors open and invite family members to join us on rounds. We show and share the radiographic imaging of their loved ones with them, bringing the adage that “a picture is worth a thousand words” to ICU communication. We ask families about whether they are getting enough sleep and if they have been able to get themselves meals. Looking into the room, we note whether it contains enough reclining chairs so that family members can steal away some sleep. When house officers bitterly lament loggerheads in goals of care with families, it is an opportunity to discuss the data presented here that quantify the immense pain and challenges these family members are confronting.
Our patients’ decision makers are an integral part of the ICU and the care we provide. In this role, they face tremendous burdens and cognitive challenges that can lead to maladaptive reasoning and impaired decision making. It is time to recognize this condition as FICUS. To get to the next level in collaborative decision making, in reaching all of our patients’ families and surrogates, we must identify, rigorously define, and methodically tackle the syndrome of suffering and impaired family members in the ICU. As our thinking and methods increase in sophistication, so should our metrics and statistical approaches. Perhaps by this approach we can substantially improve shared clinical decision making near the end of life in the ICU.
Supported by National Institutes of Health Clinical Research Career Development Award 5K12RR023250-03 (G.N.).
Author Contributions: G.N. and D.R.S. conceived and designed the study, and drafted, critically revised, and approved the manuscript.
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