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Introduction

Intensive care units (ICUs) are showcases for many of the most stunning technological advances in medicine. Survival from once routinely fatal diseases is rapidly increasing [1]. Unfortunately, the severity of illness and the invasiveness of intensive therapies can make the ICU a brutal place for all involved [2, 3]. Patients report violations of their dignity and most survivors and family members experience symptoms of anxiety, depression, or posttraumatic stress disorder (PTSD) [4]. For patients who die in or shortly after the ICU stay, many of the deaths will have been deformed by an overemphasis on medical technology [5]. ICU admission may threaten the individual’s sense of self, both from the threat of annihilation through death and the dehumanization attendant to critical illness, its treatments, and clinician behaviors [2]. The sometimes brutal realities of contemporary ICU care are generating appropriate debates about how to humanize the ICU. Several possible solutions have been proposed [6], but the topic has often been associated with a lack of clear thinking, particularly in the ICU.

The dehumanization of the ICU has persisted for many reasons, including structural/organizational problems and defense mechanisms and cognitive errors on the part of clinicians. These cognitive errors are understandable, even predictable. The ICU is stressful and disorienting enough that all participants – clinicians, patients, and families – are prone to misperceive the situation in ways that contribute to dehumanization. While clinician diagnostic errors have been well described by cognitive psychologists in recent decades [7], the risks of misapprehension and cognitive errors related to human aspects of the ICU experience are also endemic and merit consideration. Increasingly sophisticated work in cognitive psychology and judgment and decision making may shed considerable light on the problems of dehumanization in the ICU. In this chapter, we consider theory, evidence, and early solutions with an eye toward clarifying the cognitive errors and blind spots that often interfere with humanization in the ICU.

Theory

Contemporary Western bioethics (and indeed much of political philosophy) is based on individual rights and autonomy, a political, economic, and philosophical system that dates to the European Enlightenment, with acceleration in the last half‐century in Europe and USA [8]. In this understanding, the primary locus of meaning and authority is the individual and his self‐determination. This cultural understanding has led to great social and cultural changes and has been associated with substantial protections of the rights of minorities and improvements in the status of women and people of color. In this modern cultural understanding, the self is something that is constituted by acts of self‐determination, and the primary role of government in Western democracies (and other communal structures such as the medical system) is to facilitate individual self‐determination as much as possible. On this view, what is human is the individual who can consciously choose a path for himself; the process of choosing must be supported wherever possible.

Within the medical system, this modern cultural consensus has led to the steady erosion of ‘paternalistic’ ideas about the relationships between clinicians and patients [9]. In place of paternalism has come what some term the ‘consumerist’ model of medicine, in which patients are independent consumers and clinicians are ‘providers’ of healthcare, which may be the case in elective, low‐risk procedures and routine health screening. Some have complained that the consumerist model is not true to how people process serious threats to their health and make decisions during such crises [10]. The assumptions of the consumerist model of healthcare may be less applicable in critical care environments, in which people are bewildered, life is threatened, and treatments are often uncomfortable. In such times of crisis, many patients (and their families) want to be considered more than merely ‘customers’ and may resist the burden of making difficult decisions under tragic circumstances.

Within the modern cultural context, humanization has tended to refer to two ideas, perhaps at the opposite ends of the spectrum. One view is that the individual matters, in all his/her particularity. To be treated as a human being means to be treated as if your individuality were important, even paramount. The other view is an expression of solidarity. To be treated as a human being is to be treated as if the individuals interacting with you (e.g., clinicians) see you as a peer. This view need not mean that power is equal but that any power difference is morally neutral. Whereas in pre‐Enlightenment Europe rigid hierarchies were the norm, such hierarchies are much less pervasive now, even if unwelcome remnants persist. What people mean by their humanity is often, perhaps ironically, the ways in which they differ from other human beings. Often that individuality is favored over the commonality, although both matter. Both specificity and generality are relevant in the humanization of critical care. In parallel with these philosophical considerations, social psychologists discuss dehumanization as a failure to attribute human‐defining or human‐unique attributes to others (in the former case, the dehumanized individual is viewed as an inanimate object; in the latter case the dehumanized individual is seen as a non‐human animal). Psychologists (and others) have long observed that people as a general rule treat others as less human, especially when these other individuals are part of an ‘outgroup’. While such dehumanization is perhaps most familiar from political or social violence, subtle but important patterns are also observed in modern Western medicine [11].

Box 1. Elements of Humanization and Barriers to it

Elements of Humanization

  • Self‐awareness

  • Self‐determination

  • Sense of being respected

  • Attention to individuality in support and decision making

  • Feeling known by clinicians

  • Therapeutic alliance

  • Attention to modesty

  • Ownership of personal space in the ICU room

  • Attention to needs of family/loved ones

Barriers to Humanization

  • Altered consciousness

  • Inability to exercise choice

  • Fear of death

  • Discomfort

  • Invasive procedures

  • Immodest medical clothing

  • Sedation

  • Loss of individuality

  • Clinician burnout and blindspots

  • Physical exclusion of family from ICU rooms

The modern focus on autonomy and self‐determination can be difficult to apply in the ICU because so many patients lack the intact consciousness required to exercise that autonomy. The close tie between self determination and autonomy can inadvertently compound dehumanization, as ICU patients lack those markers of full humanity by token of their illness and associated disruptions of consciousness [11]. A kind of inertia can develop in the presence of altered consciousness, which heightens the risk of the dehumanization inherent to critical illness. This is of course only one of many threats to humanization. In Box 1 we display both key elements of and threats to humanization of patients in the ICU.

The individualistic focus of contemporary political philosophy has led to blind spots, especially when it comes to the people who accompany ICU patients during their illness. ICU family members (sometimes called ‘caregivers’ or ‘surrogates’) have often been seen as passive conduits for patients’ self‐determination rather than people with legitimate concerns in their own right, although some theoretical work has laid the groundwork for incorporation of families into ethical reasoning in healthcare [12]. The inattention to families has perhaps contributed to the strikingly high rates of post‐intensive care syndrome among family members, a syndrome marked by substantial psychological distress, including anxiety, depression, and PTSD [13].

‘Respect’ and ‘dignity’ are often used to describe the opposite of dehumanization. While these terms originally referred to a person’s status in a hierarchy (people higher in the hierarchy were more dignified and thereby more deserving of respect), part of the cultural changes that leveled hierarchy suggested that all people, regardless of their social status, merited respect for their dignity. While the precise meaning of the terms are debated, investigators have proposed that ‘respect’ describes actions that preserve an individual’s ‘dignity’ inherent to them as human beings. To borrow a useable, if somewhat circular definition, dignity is “the intrinsic, unconditional value of all human beings that makes them worthy of respect” [14]. Alternatively, dignity means that a person does not need to do anything to merit “unconditional positive regard” [15]. Where hierarchies still exist, such as in medical encounters, risks to respect and dignity may be accentuated.

Beyond general philosophical considerations, another matter looms large in the contemporary ICU: the inherent, ineluctable uncertainty about life‐and‐death outcomes. This uncertainty can contribute substantially to blind spots in contemporary ICU environments.

The Nature of Uncertainty

In the high‐stakes setting of the ICU, many participants and observers see patients as belonging in one of two groups. They are either going to die, in which case they merit palliative care focused on the end of life, or they are going to survive, in which case technological imperatives focused on prolonging life predominate. Unfortunately, by the time patients aggregate into such categories – if in fact they ever actually do, which has not been true when prognosis is ascertained for in-hospital deaths [16] – much of the psychological damage of ICU dehumanization has already occurred.

If predictions were entirely reliable, uncertainty would not be a problem. Statistical prediction models do exist, in multiple iterations. While these scores usefully adjust for severity of illness for hospital benchmarking, their utility for individual prediction is tenuous at best. While most models are judged by their discrimination – how often survivors’ scores are lower than non‐survivors’ scores – patients and families are more likely to care about calibration – how close predicted and observed mortality are to each other – which is most relevant to their own general prospects for recovery. Unfortunately, the regression equations used to predict ICU mortality are best calibrated in the middle ranges, where the most supporting data exist. But if prognosis is crucial for a given person, their actual decision thresholds will be relevant. We suspect that few people, if they are not already in their final phase of life, would reject a 10% chance of recovery. But prediction models are poorly calibrated in that range. For example, the mortality in the highest decile of APACHE IV‐predicted mortality is only 63%. When patients’ decisional thresholds reside outside the well‐calibrated ranges of prediction scores, a raw prognostic estimate is unlikely to change decisions meaningfully.

Clinician predictions may be favored over statistical models by both clinicians and patients, even if families tend to discount prognostic estimates in general [17]. However, the evidence that clinician prognoses are superior to statistical models is mixed at best [18]. In fact, clinician moral distress may contribute to undue pessimism regarding prognosis; in some studies, nurses, the clinicians closest to the indignities of critical illness, make the most pessimistic predictions of outcome [19].

To put it simply, current prognostication is not accurate enough to eliminate uncertainty. Since uncertainty is unavoidable, solutions intended to humanize the ICU experience will need to come to terms with that uncertainty.

Clinicians and families may rush to collapse patients into specific categories as a way to resolve the tension associated with prognostic uncertainty. Anthropologists describe ‘liminal’ entities which sit on the threshold between established categories, states, or conditions [20]. Such liminal entities are difficult to accommodate in clinical care, as in the rest of life. Sick patients in the ICU are often liminal in precisely that sense, and clinicians and families may want the patients to fit into one of the established categories ‘going to survive’ or ‘dying’. The reality is that nature is continuous, and so are the probabilities of recovery. Careful communication that seeks to understand and honor the individual’s values, goals, and priorities is likely crucial to dealing with ICU existence between life and death. Where clinicians push for premature certainty about outcome, families may bear substantial burdens of guilt, even when the patient survives (if, e.g., a family member wanted to stop treatment in response to a dire prognostication by a clinician).

Potential Barriers to a More Human ICU

The provision of intensive care is demanding, exhausting work and it requires being in the presence of patients’ terribly disfigured bodies that often lack the consciousness that makes people familiar as people. ICU clinicians experience high rates of burnout, ‘vicarious traumatization’ and ‘compassion fatigue’, with attendant mental illness and reduced quality of life [21]. Dehumanization may be adaptive for clinicians in the ICU: thinking too often about the humanity of patients could hypothetically increase the risk of burnout [22]. Notably, though, burnout tends to be associated with moral distress, emotional depletion, toxic communication environments, and feelings of helplessness, which need not be inevitable in the ICU. It is possible that increased humanization, especially through the practice of empathy, in the ICU could decrease the risks of burnout [23]. Whatever the specific relationship between humanization and clinician burnout, a human ICU will need to be healthful for clinicians as well as patients and families.

Intense time demands on ICU clinicians may also prevent humanization. Clinicians may worry that it will take more time to honor the humanity of a patient since such efforts may add to the time required for the technical medical components of care. On the contrary, it may be that improved communication and humanization decreases the amount of time spent resolving conflicts. These are open empirical questions that merit careful research.

The residual effects of medical paternalism may also interfere with humanization [2]. Specifically, some clinicians may be tempted to treat patients as children. While paternalism may be born of excellent motives – a desire to protect vulnerable individuals from unwanted stress – in addition to less worthy motives – a desire to maintain physician power – treating patients as children when their sense of self is already under attack may both demoralize and interfere with communication. In contemporary society, people expect to be treated as independently worthy individuals; paternalism directly counteracts that assumption. However inadvertently, paternalism contributes to dehumanization. The balancing act of full, meaningful collaboration between clinicians and patients that is necessary for humanization will be hard to achieve, but clinicians will need to bring their expertise and commitment to bear in a way that treats patients and families as partners rather than dependents.

Practical Solutions

In Box 2, we display the attributes of a traditional ICU model vs. a humanized model of the ICU. In the following sections we consider several of the questions relevant to humanizing the ICU.

Box 2. Attributes of Traditional Versus Humanized ICUs

Traditional ICU

  • Patients sedated and immobilized

  • Personality defined by clinicians

  • Social network excluded

  • Patients dependent/passive

  • Lost sense of self

  • Activities defined by clinicians

  • No ownership of space or body

  • Patients unable to communicate

  • Patients not addressed by name

  • Decisions often don’t reflect values and priorities of patients

  • Policies decided exclusively by clinicians

  • Communication haphazard, with limited training

Humanized ICU

  • Sedation minimized

  • Mobilization maximized

  • Personal history known to clinicians

  • Families are full partners in care

  • Patients and families participate in care

  • Activities defined in part by patient/families

  • Adaptive communication technologies used

  • Clinicians knock before entering and ask permission to touch patient

  • Clinicians address patient by name

  • Decisions reflect values and priorities of patients

  • Policies decided in collaboration with patients and families

  • May involve communication facilitators

Engagement

“Patient and family engagement” is a current emphasis in healthcare [24, 25]. While definitions of engagement vary somewhat, they all focus on inclusion and active partnership among clinicians, patients, and families. Engagement in the ICU differs from outpatient models of engagement for chronic disease management [26], but despite such differences, engagement should help address the high prevalence of learned helplessness in the ICU [27]. While patients, families, and clinicians may in fact be powerless in the face of a relentless critical illness, engagement may help ease the burden of critical illness by decreasing the sense of isolation or helplessness and allowing families to contribute to ultimate recovery.

Let Them In

A crucial barrier to engagement and humanization more broadly is a traditional exclusion of patients’ loved ones from the ICU bedside. People’s social networks (people we call ‘family’ as a shorthand for those whom a patient would want involved in his/her medical care [26]) are crucial to their identity, especially during health crises. Families are caregivers, both before and after the ICU admission, but they also represent the individual in ways that would otherwise be inaccessible to clinicians. Historically, families have been excluded from the ICU despite their importance to patients for emotional and social support.

It is time to stop excluding families from the ICU. Sufficient data already exist to support generally open visitation policies [28]. Accumulating experience suggests that families should be involved in ICU rounds [29]. Small studies suggest that all benefit from families participating in certain bedside care activities [30]. Early evidence from cardiopulmonary resuscitation (CPR) [31] suggests that families should even be allowed to be present during procedures within the ICU. Such openness to physical presence is in keeping with the wishes of patients and family members, who have for decades advocated for access to ICUs and partnership with the medical team [28, 29]. It is time the medical system honored those wishes.

Improving the Exercise of Respect

While humanization may sound nebulous, the practice of respect may be easier to grasp. Patients and families clearly and consistently want to be treated with respect [32]. Considering ‘respect and dignity’ as important outcomes may be a useful entry into solutions that enhance patient and family engagement and humanize the ICU experience. One group has begun defining violations of respect as preventable harms requiring root‐cause analysis [33]. Relatively simple interventions may go a long way towards improving respect. Learning patient and family names, knocking before entering the room, asking permission before touching the patient, addressing even unconscious patients as if they merited social engagement, emphasizing the coordination of communication and many other practices basic to respect could dramatically improve humanization.

Central to treatment with respect is the need to tailor medical treatments to the values and priorities of the individual patients in ways that honor them in their entire humanity. Thus far, solutions to that problem have been of low quality [34]. We propose in their place a new paradigm that emphasizes real‐time personalization of medical care during serious illness, tailored to the individual and the expected trajectory of illness.

Personalized Care During Serious Illness

While historical paternalism has been appropriately criticized, some have swung to the opposite extreme, a thoughtless application of autonomism [34]. Without care, extreme autonomism may inadvertently dehumanize participants by placing ill‐equipped individuals into decision‐making environments where they are likely to fail. Patients and families often founder in an overly legalistic environment at a time of crisis. Importantly, many uses of advance directives remain prone to clinician bias by diverting attention from patient‐oriented considerations to clinician‐oriented questions, such as whether to perform CPR [2, 34].

As a cautionary tale, a substantial proportion of patients listed as do‐not‐resuscitate/do‐not intubate (DNR/DNI) were merely trying to communicate that they did not want to persist in a vegetative state [35]. When proclamations rejecting certain extreme states are misinterpreted, they may lead to unnecessary premature death. A patient with early cancer, for example, may have requested DNR/DNI only to avoid treatments when all hope is lost, but his statement could be misconstrued as a refusal of mechanical ventilation even for pneumonia, despite excellent prospects of recovery to several more years of quality life. Without substantial assistance, many individuals might inadvertently communicate something they did not intend.

A hybrid approach, rather than either extreme of paternalism or autonomism, is indicated in our view. We believe it is important to strike a balance that honors the person as an individual while not forcing a view of the problem on them that is alien to their desires and experience or in conflict with their values and priorities [2]. We advocate “personalized care during serious illness” (PCSI, outlined in contrast to the traditional model in Table 1) as a model for using more patient‐centered approaches to replace traditional advance directives. Within the PCSI framework, we advocate close collaboration and personalized guidance as a path to solutions that best align treatments with patients’ values and priorities and honor the patient as a person. The older advance directive model has focused on specific procedures to refuse in a hypothetical future, exemplified by questions we have heard physician trainees ask patients, such as, “should we pound on your chest if your heart stops?”. The PCSI model advocates a focus on understanding the individual, coming to understand what phase of life they understand themselves to be in, and discussing likely upcoming medical events. Rather than focusing on stigmatized procedures like CPR, the focus in PCSI is on the patient, his/her hopes, values, and priorities, and the concrete medical situations in which those values and priorities will be brought to bear. PCSI begins by asking, “who are you [or your loved one] as a person?” and “what phase of life are you [or your loved one] in?” and proceeds from there to develop individualized plans of care, specific to the person as an individual and the likely course of disease.

Table 1 Comparison of traditional advance directives and personalized care during serious illness (PCSI)
Full size table

Recent work, focused on patients dying in the ICU, has taken a pragmatic approach to identification of individual patient’s priorities, using the framing of ‘wishes’ for the end of life [32]. By helping patients and families focus on final tasks that can be performed before death, including mechanisms to summarize and honor the meaning of a life, clinicians can help create meaning as life is near its close. Strenuous efforts in support of humanization should be undertaken for those who ultimately die and those who ultimately survive.

The main thrust of the PCSI model is to create concordance between the treatments provided, the ways they are provided and patients’ actual values, goals, and priorities. Such efforts to improve the match between medical treatments provided and the patients’ values, goals, and priorities will depend on conscientious, effective communication.

Learning to Communicate

Improved communication skills appear to help in high‐stakes clinical encounters. Communication training and a bereavement pamphlet helped in France [36]. ICU clinicians have proved trainable in terms of basic communication skills [37]. However, a large randomized trial raised the possibility that brief simulation‐based communication training may not lead to better outcomes for patients, a crucial problem [38]. Studies of communication will need to demonstrate improvements in patient‐centered outcomes rather than just intermediate outcomes.

Despite these caveats, some general observations appear valid. Families prefer family meetings when they are allowed to speak more [39]. Training in sympathetic communication combined with a bereavement brochure decreased PTSD among families of ICU patients near death [36]. Families are more satisfied when they have more information [40], likely due to the empowerment that comes from understanding the generally unfamiliar ICU environment and a loved one’s condition. An intensive communication strategy decreased ICU length‐of‐stay without affecting the mortality rate [41]. Substantially more work remains to be done to define optimal methods of both communication and training for clinicians. Ultimately it is likely that optimal communication methods will need to be tailored to the specific individuals involved.

Confronting Our Blindspots: The Practice of Situational Awareness

Psychologists have extensively documented the fact that experts are just as susceptible to predictable cognitive errors as laypeople. Certain industries (e.g., military, aviation) employ explicit techniques to foster ‘situational awareness’. These methods help participants step out of automatic thinking into more deliberate modes of reasoning. Such explicit techniques may decrease errors [7]. In intensive care, procedures and the medical treatment of dynamic patients require situational awareness. But situational awareness is also important in interactions with patients and families at a human level. We suspect that most of the dehumanization in the ICU occurs unconsciously, driven in large parts by factors that escape participants’ awareness.

In Box 3 we display some of the risks to situational awareness for all participants in the complex environment of the ICU.

Box 3. Vulnerabilities and Sources of Blindspots of ICU Participants

Clinician

  • Personal fear of death

  • Personal religious convictions (including atheism)

  • Experiences with other patients

  • Chronic workplace stress

  • Guilt

  • Difficult work conditions

  • Intra‐team conflict

  • Inexperience

  • Stress at home

  • Burnout

  • Power structures

  • Historical medical culture

Patient

  • Personal fear of death

  • Personal religious convictions (including atheism)

  • Pain

  • Altered consciousness

  • Acute stress reaction

  • Unfamiliarity with the ICU

  • Dyspnea

  • Sleep disruption

  • Limited self‐efficacy

  • Poor coping skills

  • Limited resilience

  • Immobility

  • Low health literacy

Family

  • Personal fear of death

  • Personal religious convictions (including atheism)

  • Sleeplessness

  • Anxiety

  • Unfamiliarity with the ICU

  • Acute stress reaction

  • Learned helplessness

  • Relationship with patient

  • Prior caregiving burden

  • Anticipated caregiving burden

  • Low health literacy

Turnbull et al. have shown that intensivists may rely on unconscious biases in their recommendations regarding life support decisions in ways that do not accurately honor patients’ values and priorities [42]. Those findings are likely the tip of an iceberg. While decision aids might improve the quality of decisions [43], it is nevertheless important to be careful to apply such aids in ways that do not amplify clinician bias. The risk of clinician bias is particularly severe when biased ‘nudges’ are employed, e.g., videos designed to decrease the rate of ‘full code’ designations among patients [44].

Maintenance of Mental Health During the ICU Experience

Crucial to humanizing the ICU is recognizing the needs participants have for psychological health after the ICU experience. Relatively little work has been done on how best to prevent later psychological distress in the ICU, although Davidson et al. have suggested that involvement in bedside care helps families [30], and Cox et al. have begun work on early coping interventions for ICU families [45]. Empirically, ICU diaries decrease post‐traumatic stress by helping families to support survivors in the consolidation of true memories in place of delusional memories associated with critical illness encephalopathy [46]. Additional research is urgently required to decrease psychological distress for patients and families after the ICU admission. It may be that recruiting additional experts into the ICU milieu may improve situational awareness and psychological outcomes among participants in the ICU.

New Experts

Peers and Doulas

It is common when bias is a substantial risk to introduce a third party whose blind spots do not overlap with those of the principals. This is probably true in medical encounters as well as in more general problem solving. Such a third party may well have a specific role to play in the ICU. In labor and delivery, a ‘doula’ exists to mediate between prospective parents and their clinicians. Such an individual may have a similar role to play in the ICU. Two large randomized, controlled studies are evaluating similar individuals as communication facilitators [47, 48]. Social workers or chaplains may fill such a role. Others are pursuing the question of whether veterans of the ICU experience could serve in such a role, as part of a much larger effort to encourage peer support among ICU patients and families [49]. Such activities make intuitive sense but are not yet evidence‐based. Research on their optimal structure and efficacy is urgently indicated. Independent of specific ICU admissions, non‐clinician experts may have an important role to play in shaping the structure and function of the medical system.

Patient‐Family Advisory Councils (PFACs)

PFACs began in the USA in pediatric hospitals [50]. Currently about a third of US hospitals report having a PFAC, at least at the hospital level [25]. Anecdotally, these councils work well at providing layperson insights into the experience of intensive care, although how best to integrate PFACs into hospital operations is not yet firmly known and may be an appropriate topic for additional research. In our institution, members of the ICU PFAC have written manuscripts with us, performed in‐service training with clinicians, revised our unit orientation process, created streamlined methods for visitor authentication, performed content validation of survey materials, and guided development of study protocols. Some such improvements should be considered straightforward operational improvements, while other aspects should be subjected to rigorous study.

Conclusion

The medical technology in the ICU is by and large familiar and robust enough that we can safely focus effort on rehumanizing the ICU. Some aspects of humanization should begin immediately. We can already say that ICU visitation should be open and that ICU diaries should be made available. Careful attention to communication for patients at very high risk of death is supported by multiple studies. Other interventions will require careful multidisciplinary research before a sufficient evidence base exists to support them. How best to nurture peer support and how to optimize the personalization is still largely unknown. How to deal with clinician burnout is also important, as rehumanization strategies that worsen clinician distress and burnout are unlikely to be ultimately successful. Opportunities for meaningful research and patient‐centered reform should be embraced.