Understanding Reactions of Patients and Families and Sharing Difficult News

Next, medical causes of disruptive behavior should be ruled out. ICU patients acting in a bizarre or agitated manner often do so as part of a delirium. This may entail suffering persecutory delusions that staff members are torturing them or hallucinations that are arrestingly frightening. Since delirium can be lethal (14), it is very important to first discover and treat the underlying causes of delirium and to administer treatment for agitation, which may include a bedside sitter or use of calming pharmacotherapy, including neuroleptics. A full discussion of delirium is provided in Chapter 123.

In addition, a number of patients come to the ICU with established psychiatric diagnoses, including major depression, anxiety disorders, substance use disorders, and schizophrenia. Occasionally, discontinuation of a patient’s outpatient psychopharmacologic medication is performed purposefully (15). In other instances, admitting physicians fail to review the outpatient medication lists, and unintended disruptions (16) in the proper treatment of a patient’s psychiatric illness ensue. This can lead to some patients suffering panic attacks, and cause others psychotic exacerbation with paranoia and hallucinations. Some patients experience discontinuation phenomena, such as the fatigue, insomnia, agitation, and myalgias associated with abrupt cessation of serotonin reuptake inhibitors (SRIs) or sudden discontinuation of alcohol, stimulants, narcotics, or sedative medications. Hence, on admission, it is important to learn about a patient’s psychiatric and substance use history, and to find out what medications, if any, have been useful in the past in treating their illness or potential withdrawal. At any point in this evaluation process, psychiatric consultation may be helpful.

Finally, before examining psychological factors leading to problematic staff–patient relationships, it is important to maximize patient comfort. Remember, staff in the ICU grow very accustomed to their workspace. They may enjoy laughs with colleagues, breakroom snacks, knowledge of when a shift is over, while most patients are miserable with pain, the discomfort of an endotracheal tube, ICU noise, sleeplessness, and not knowing if or when their illness will be resolved (17,18). Working hard to minimize these factors by providing adequate analgesia, effective sleep agents, uninterrupted time with family and loved ones, and efficient use of tubes and catheters may reduce some of the patient discomfort that drives disruptive behavior.

EXISTENTIAL CONCERNS OF PATIENTS AND FAMILIES IN THE INTENSIVE CARE UNIT

Being an ICU patient, or having a loved one who is critically ill, is intensely stressful (19,20). Studies indicate that 3 months after patients are treated in the ICU, approximately one-third of caregivers and family members are at risk for depression (21) and posttraumatic stress disorder (22). Patients’ most prominent concern early in their ICU stays involves how they feel physically. Pain, hunger, restless exhaustion, the irritation of tubes and catheters, and isolation are the predominate focus of the acutely ill individual; it is usually not until the convalescent or subacute period in the patient’s hospital course that larger, existential crises and psychological problems come to the fore (23,24).

Critical illness raises many existential concerns for patients and loved ones. Looming in the minds of patients and family members is the prospect of death, with critically ill individuals often reflecting on their lives. Confronting death may fill them with guilt, regret, and wishes that they could have accomplished more. In others, this may be a time of contentment and reflecting on lives well-lived. Amazingly, this can occur even in a delirious patient. For example, one 80-year-old gentleman who had undergone emergency cardiac bypass surgery, tearfully yet proudly shared this experience of his delirium: “I went on a train trip in my head, with stops along the way involving each stage of my life. My marriage, the birth of my children, the child we lost, the different businesses I had run, everything was in there.” Family members also reflect on the lives of their ill loved ones and upon their relationships with them. For many, fond memories and experiences will abound; for others, traumatic memories may arise, leading to some surprising interactions with staff that may seem to come from out-of-the-blue.

Thoughts about the past and the future arise in critically ill patients and their family members. Patients often worry about how they will function once discharged. Depending on the nature of their injury or illness, patients may ponder such questions as: Will I have to live in a nursing home? Will I ever be free of dialysis? Will I ever walk unassisted again? Friends and family also confront how they will proceed financially or how they will emotionally shoulder the often heavy burden of caring for their loved-one, partner, or friend after hospitalization. Ambivalence and tension between, on the one hand, being excited that the ICU patient has emerged from critical condition and, on the other hand, concern about his/her/their quality of life contributes to this stress.

There are pressing concerns about the present as well. Most patients are treated in the ICU because their bodies fail to handle the most fundamental tasks of life. Whether involving breathing on their own, feeding themselves, or handling secretions, urination, and bowel movements, patients in the critical care setting are dependent on others; this is a loathsome experience for some. Still others may long for exceeding amounts of attention, reacting to the loss of autonomy with complete resignation. Loved ones, particularly those who are caretakers of chronically ill individuals, also feel the sting of this loss of autonomy. For example, one woman who, for several years, had lovingly cared for her partner suffering end-stage Parkinson disease tenderly commented: “It’s not just that he’s sick; it’s that I have to trust you doctors and nurses to take care of him. That’s my job.”

COPING IN THE INTENSIVE CARE UNIT

It is difficult to bear the intense feelings of pain, love, loss, regret, and hope that being treated in the ICU, or having a loved one treated for critical illness, engenders; and people vary in their ability to tolerate these emotions. To an amazing extent, most families and patients are able to muster inner strength, gain security from each other or draw on outside resources, and cope well in times of adversity. While such families and patients may continue to suffer stress and depressive symptoms, their mature psychological coping mechanisms (Table 3.2) allow them to collaborate with care teams.

On the other hand, some families and patients struggle with critical care staff. Such individuals typically fall into two categories: (a) those with personality disorders, whose personal and professional lives were replete with problems before they entered the ICU; and (b) those who have simply regressed, utilizing primitive coping mechanisms that, outside the ICU, would be less apparent or even absent.

Personality disorders refer to severe, pervasive exaggerations of normal personality traits—styles of dealing with the world (25). As the focus of intensive care medicine is on the here-and-now, and major psychosocial investigations of a patient or family member’s life outside the unit are inappropriate, distinguishing between the two categories is unnecessary in this chapter. Also, for the sake of convenience, we refer only to the “personality-disordered patient”; however, please note that the descriptions provided may also characterize family members.

All patients with personality disorders have difficulty tolerating affect, or emotion. They often demonstrate skill deficits in reasoning, thus compromising their ability to subdue intense feelings. Further complicating matters, they often have difficulty distinguishing what others are feeling and their own motives and tendencies (26–28). Without their awareness, and to the surprise of their caretakers, such individuals consistently employ defense mechanism that disrupts critical care. To examine this more closely, let us examine a simple hypothetical, toxic hospital interaction:

A nurse’s aide asked a non-delirious middle-aged attorney recovering from back surgery what he wanted for the following day’s meals. The man handed this caretaker his menu and barked: “I want some decent food, not the crap you serve here!” Caught off-guard, the nurse’s aide picked up the menu, but distracted by the man’s rudeness, left it by the sink after she left the room. The next meal, when the wrong cuisine arrived on the man’s tray, he derided this attractive and typically savvy staff member as “ugly,” “incompetent,” and “worthless.” He complained bitterly to everyone who entered his room about this person and the “dietary travesty” for the rest of the day.

Some may argue that clinicians simply need to work with a patient’s overt behavior: “What you see is what you get. Deal with it!” Accordingly, these people argue that our job in the ICU is not to delve into the motivations driving a patient’s actions or feelings. Such folks may simply dismiss the patient’s behavior as rude and note that he had a finicky palate. Alternatively, we contend that investigating the emotions and inner conflicts underlying the man’s rudeness offers a deeper, more sympathetic version of what occurred. We can first speculate that this man, a powerful individual outside the hospital accustomed to getting his own lunch and going to the bathroom without the aid of a bedpan, felt extremely “incompetent.” Perhaps used to knowing every aspect of his client’s cases and his staff’s work, he also loathed the idea of the medical and surgical staff knowing more about his magnetic resonance imaging (MRI) scan, labs, and even his lunch time than he did. Finally, he may also have been quite attracted to the nurse’s aide and, pale, unshaven, and sitting in bed wearing a hospital johnny, felt that he himself looked very ugly. Through his brief comment, the man was able to redirect his intolerable feelings. He turned his sadness into hostility and projected his feelings of incompetence onto the nurse’s aide. She, in turn, felt flustered and perhaps angrily, “accidentally”—passively aggressively, without conscious awareness—left his menu by the sink. He was also able to defend against his concern of not knowing what is supposed to happen in the hospital, by pointing out that he knows he was getting the wrong meals, and was able to engage his doctors and nurses in a discussion about his food as opposed to his medical treatment. Thus, the man’s defenses took on a life of their own with conflict over a breakfast tray taking center stage, his illness fading to the background. In this case, the man’s behavior falls in the “narcissistic” category, which represents one of the four main, difficult patterns of interpersonal behavior we have identified. Below we describe each personality type and offer management advice on treating the narcissistic, obsessive, dependent, and overly dramatic patient (Table 3.3).

TABLE 3.2 Mechanisms of Defense Employed by Patients, Family, and Staff in the Intensive Care Unit

TABLE 3.3 Common Problematic Personality Styles Encountered in the Intensive Care Unit

Narcissism

Patients in the ICU lose autonomy and, for most people, regaining a sense of control over their lives is important; for the narcissistic patient, this need takes on an overwhelming urgency. Narcissistic patients approach the world in a grandiose fashion with an exaggerated sense of self-importance. They typically believe they are special and unique, requiring excessive admiration. They have significant problems with empathy and feel a strong sense of entitlement for care, concern, or special treatment (25). If they fail to receive these “entitlements,” they attack, sometimes ruthlessly. It should be noted that these traits often are responses to underlying feelings of insecurity, low self-esteem, ineffectiveness, and profound feelings of deprivation—typically stemming from neglectful interactions in their childhood. Despite their overt demonstrations of strength and power, in reality they feel weak and fragile; it is crucial to recognize that they are not in touch with these underlying feelings, and that if confronted, they are apt to fiercely deny and reject that they have them.

Occasionally, as the example above demonstrates, the narcissist’s need for control and special care may take the form of scathing critique concerning the health care staff. These patients often deride nurses (“That’s the wrong bandage!”), belittle housestaff (“You must be new at this, Doogie”), and drop names (“Dr. Thompson, the world famous nephrologist, is a buddy of mine from college; he never allows patients to be treated like this”) to demonstrate their “connections.” Staff reactions to such patients include rage and revulsion when they are the subject of derision, or, more commonly in more junior house officers or staff, feelings of inadequacy or inferiority.

Insofar as possible, it is best to collaborate with—rather than confront—this type of patient. To avoid caustic exchanges ending in both the patient and physician feeling hurt or enraged, one must choose to have a different relationship with the patient; this may be achieved by avoiding authoritarian condescension and by appealing to the patient’s narcissism. Remember, when narcissistic patients examine their surroundings in the ICU, all they see their own inadequacy, inability, and incapacity. When a physician or nurse uses a tone of voice that conveys respect, chooses words that remind patients that, despite their infirmities, they are valuable people, he/she offers such patients the respect they so desperately crave. This may entail calling patients “sir,” “ma’am,” “Mr.,” “Ms.,” “Dr.,” “Professor,” “Officer,” as appropriate. Of course, it is useful to ask all patients about their lives, but this is particularly so with patients who use predominantly narcissistic defenses. This promotes the notion that you think of these patients as vital, able-bodied individuals who happen to be suffering severe infirmity, as opposed to thinking of them as fragile nonentities—the narcissistically vulnerable individual’s worst fear.

Narcissistic patients appreciate gaining as much control as possible. Hence, even controlling their light switch and TV, using patient-controlled analgesia, or being able to choose to “go first” or “go last” when the phlebotomist performs rounds, helps patients feel like more of a collaborator in their care. Finally, avoiding power struggles with narcissistic patients is of utmost importance. For example, a psychologically minded ICU nurse who was typically well-liked by staff and patients was being bossed around by a Very Important Patient (VIP), who eventually asked for a different nurse. Rather than being offended, the nurse simply exchanged patients with a colleague. She offered: “Hey, when I was young I would have been offended and told him ‘I am your nurse and you are stuck with me.’ But he’s not in the ICU for me to be his nurse. He’s here because he’s sick and needs help. So I just found another person to care for him.”

Dependency

Overly dependent patients are hypersensitive to abandonment and suffer intense anxiety. These individuals feel empty and isolated, often because they came from families that never provided adequate caretaking. They cling tenaciously to clinicians or family members, often engendering feelings of disdain and aversion. Clinicians are typically idealized and considered endowed with superhuman powers. Such patients have an inability to hold onto the comforting feelings they receive from ICU staff, friends, or relatives when those people are not actively helping them. In psychiatric terms, we would state that, similar to the early toddler, the dependent patient has poor object permanence, unable to conjure a mental image of his/her caretakers when they are out of sight (26). Thus, these patients demand urgent assistance with nearly every aspect of ICU life. Often these entreaties are the same as one would expect any hospitalized person would want: Better food, more analgesia, softer pillows, more frequent visits and doctor reports, enhanced light, nicer views, gentler examinations, and fewer tubes and catheters. However, for the dependent patient, these concerns consume the patient and their plaintive cries can drive ICU staff to distraction.

Addressing—as opposed to avoiding—the relationship needs of the dependent patient involves frequent visits and keeping the patient informed. Nurses and doctors should let such patients know when they plan to come back into the room, when rounds might take place in the morning, when transfer to another ward will happen, and when tests will take place. For many dependent patients, this basic information will not be enough to soothe their demands for instant anxiety relief. In these situations, the nurse–patient or physician–patient relationship can be transformed by (a) validating that the patient’s concerns are real; (b) communicating to the patient that his or her request is understood; and (c) explaining to the patient that the staff will do everything in their power to help, but that it may not be possible to provide everything the patient demands.

These three tasks are accomplished through statements that include two words: “I wish.” For example, an exceedingly dependent patient in the ICU cried to her young house officer: “Doctor, I’m so scared. Please, please keep checking on me!” The savvy resident responded: “Ms. D, your illness is severe and I am imagine very frightening. While I wish I could stop by every hour, I have a lot to do in the hospital today. I promise, though, to check in with you this evening around 5 p.m.” The patient’s fear and anxiety validated—believing that her physician would keep her and her problems in mind throughout the day and actually stop in for a visit, she felt comforted and acted in a manner that was less demanding and frightened.

Obsessionality

Obsessive individuals are emotionally constricted and rigid. They tend to focus on minute details and lose the big picture. They are compelled to make the “right” or “perfect” decision based on “facts” and never feel that they—or their caregivers—have all the information to provide optimal treatment. Consequently, they are intensely frustrating to providers, who feel assaulted by endless questions and devalued, as the provider never has the patient’s confidence in treatment decisions (23). Caring for the patient or family member who pays obsessive attention to detail and routine can be very taxing. By clinging to the “rules of medicine” as a 7- to 10-year-old child might adhere to the rules of a board game, the obsessive patient can irritate physicians and nurses. In contrast to narcissistic patients who regain control over their surroundings via denial, distortion, and bullying behavior, obsessive individuals defend against feelings of helplessness by focusing on medical minutiae. The obsessive logic goes “a place for each thing and each thing in its place” (29). Of course, everything in the ICU is out of place; patients do not know what their radiographs show right away; their labs are a mystery to them for several hours, even days; and the meaning of the blips and bleeps of monitors buzzing around them is not understood. So, with often very rudimentary medical knowledge, the obsessive patient or family member works hard to gain mastery over these details. “Losing the forest for the trees,” the obsessive patient asks incessant questions. For example, one woman with Guillain–Barré syndrome demanded to know why she was not being transfused when she saw an “L” marked next to her “HCT” of 32.3%. When her nurse sat down next to her bed, summarized her lab report, and explained the team’s management rationale, the patient felt knowledgeable and was soothed. Again, dealing with this type of difficult patient interaction takes extra time and a firm decision on the practitioner’s part to have a different relationship with the patient. Obsessive patients cannot stand the paternalistic, authoritarian approach, and the practitioner who is not flexible will get into fruitless standoffs with these patients. Statements such as “you just rest and let us take care of you” are intensely irritating to most people, but even more to the obsessive patient. Instead, offering the obsessive individual a set amount of information, with a satisfying but not overwhelming amount of detail, can be key. This may mean including the patient in the rounds process, showing them chest radiographs, reviewing their “lytes” at bedside, treating the patient as one might be a medical student on his/her initial clinical rotation. Second, the obsessive patient, like all patients, appreciates routine. Announcing and, insofar as possible, keeping to a schedule in which nurses and physicians will visit is important. Finally, scientific, deductive reasoning (“if your labs show X, then we’ll respond by doing Y”) curbs the obsessive patient’s anxiety.

Drama/Histrionicity

Often projecting how they think and feel and believing their perceptions to be correct—for example, about being belittled, ignored, misunderstood—patients who are extremely dramatic can wreak havoc. Engaging in highly volatile relationships, such patients, many of whom suffer borderline or histrionic personality disorder in the official psychiatric parlance (25)—engage their physicians and nurses in relationships that are intensely intimate or staggeringly conflictual. The dramatic patient often seduces some staff members and alienates others. This leaves ICU personnel at odds, with some having had a very positive experience with the patient, using phrases like “lovely,” “charming,” and “delightful” to describe the patient, and others considering the patient obstreperous or toxic. When clinicians who have such divergent experiences with a dramatic patient convene, there is often a conflict over how to manage the patient’s demands. This experience is dubbed “splitting” and can create tremendous tension. The deleterious effects of splitting, which include mistreating the patient and high staff tension, are minimized when physicians and nurses acknowledge that they have had much different emotional experiences with a patient. Once this is done, limits can be set in a manner that both soothes the patient and settles the staff (Table 3.4).

TABLE 3.4 Principles of Effective Limit Setting in the Intensive Care Unit