Delirium: A Pernicious Enigma

Delirium and Management: A “Headache” for Nursing Staff

Lack of a standard conceptualization in delirium would not matter so much if delirium were not so highly distressing for patients and carers. Yet, it also seems invisible to clinical staff (Inouye et al., Reference Inouye, Schlesinger and Lydon1999). There are additional factors that may contribute to this discordance. For example, the competing priorities of a busy clinical environment can disrupt delivery of care to a high-needs patient (with delirium) (Abbey et al., Reference Abbey, McCrow, Whiting, Pandy, Parker and Sacre2009). Also, altered behaviour in the patient presents an undeclared aspect of nursing practice that significantly impacts workload (Yevchak et al., Reference Yevchak, Steis, Diehl, Nikki, Kolanowski and Fick2012). Effective treatment strategies may therefore be difficult to apply, which may hamper translation of best practice ideals into clinical care (Teale & Young, Reference Teale and Young2015). Accepted management strategies, often in the form of multi-component “high touch, low tech” interventions, lack technological lustre and offer little in the way of traditional “kudos” among hospital staff (Teodorczuk, Mukaetova-Ladinska, Corbett, & Welfare, Reference Teodorczuk, Mukaetova-Ladinska, Corbett and Welfare2013). Even when nursing staff attempt to highlight the case of a delirious patient, this discourse is subverted by a biomedical and scientific narrative that serves to devalue their contribution to patient care (Kjorven, Rush & Hole, Reference Kjorven, Rush and Hole2011). In addition, there is an understandable need for health care staff to protect themselves from the physical and emotional toll of caring for the delirious patient (Agar et al., Reference Agar, Draper, Phillips, Phillips, Collier and Harlum2012). Hence, rather like managing the intoxicated patient in the emergency department (ED), at worst, it becomes simpler for health care professionals to move such patients to another setting, or focus efforts on managing more deserving or simpler to manage patients on the ward.

Finally, the wider culture of the hospital is a vital indicator of delirium care. Historically, work-based performance is undervalued relative to academic prowess. The neglect of delirious patients, whose treatment is both time consuming and lacking in prestige, may be perpetuated within these hierarchical systems (Teodorczuk, Mukaetova-Ladinska, Corbett & Welfare, Reference Teodorczuk, Mukaetova-Ladinska, Corbett and Welfare2015). At a system level, patients with delirium are the first to fall through the cracks when there are problems with care processes for patients more widely (i.e., it becomes a surrogate marker for how well hospitals are performing). As hospitals struggle with fiscal cuts and the aging population, delirious patients are receiving poorer and poorer management. Hence, they become casualties of wider cultural/system challenges (Francis, Reference Francis2013).

Alongside the overt challenges to effective delirium care, it is worthwhile reconsidering what might be happening to the delirious patient that impacts on the nature of the caring relationship. For that, we need to first review the fundamental properties of the brain and mind in health and delirium.

Reflective Self, Delirium, and the Risk of Dehumanisation

Cogito, ergo sum (Descartes, 1644). In other words, reflective consciousness is central to the self. The capacity for reflection is what allows a person to unify and direct his/her awareness of the physical and social environment and thereby successfully interact with it. This capacity is therefore vital (although not sufficient) for intentional action, and it is central to personal responsibility. It is also key to self-awareness and self-understanding, and therefore plays a central role in self-identity and how a person presents him/herself to the outside world. This emergent property of reflective consciousness (Eeles, Teodorczuk, & Mitleton-Kelly, Reference Eeles, England, Armstrong, Pinsker, Pandy and Teodorczuk2018) relates to metacognition, or thinking about thinking. This metacognition is an ability state brought about by orderly relationships between hierarchical and functional networks within the central nervous system (CNS) and its supporting connectivity. In particular, the default mode network (DMN), subserved through midline structures such as the posterior cingulate and medial prefrontal and angular gyrus, is responsible for such off-task thinking (Kucyi, Reference Kucyi2018).

Arguably, delirium can be considered a disorder of reflective consciousness. Earlier iterations of clinical criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM) have incorporated consciousness disturbance as a key manifestation of delirium as per Table 1 (American Psychiatric Association, 2000). In the fifth edition (DSM-5), disturbance of awareness^{Footnote 1} can be interpreted as being synonymous with consciousness disturbance or clouding (American Psychiatric Association, 2013). The measurable surrogate for this disturbance is disrupted attention, the sentinel gate to reflective consciousness (Zeman, Reference Zeman2001). Pathological co-activation of the DMN with task-positive structures is likely responsible, at least in part, for disruption of reflective thought and consciousness disturbance in delirium (Choi et al., Reference Choi, Lee, Chung, Park, Jung and Kim2012, Eeles, Burianova, Pandy & Pinsker, Reference Eeles, Burianova, Pandy and Pinsker2017).

Table 1: DSM-5 classification of delirium

In the state of delirium, reflective consciousness is therefore disrupted and populated with clinical features such as strange beliefs, disorganized thinking, and hallucinations. This disturbance has profound consequences for the self, because thoughts thus corrupted by delirium are fundamentally unlike the ruminations of the non-delirious person; the patient’s foundational perception of his/herself and relationship with the environment is so altered and diminished that the contents of his/her conscious awareness becomes divorced, or at least adrift from, the “normal” self. Measurement of this form of consciousness content is incorporated into clinical assessment with disturbance therein regarded as one of the key criteria for delirium (Inouye et al., Reference Inouye, van Dyck, Alessi, Balkin, Siegal and Horwitz1990).

Severe disruption of delirious patients’ capacity to comprehend and engage with their environment, and the significant alteration in their expression of self has a range of effects that introduce unique issues for physicians. First, the reduced capacity to identify with the patient reduces the capacity to relate to, or empathise with, him/her, which can negatively impact on the diagnosis, care, and family. Second, the distress inherent in such a significant change from normal functioning of the self can be emotionally challenging for staff and significant others. Third, and most importantly, the interruption of self substantially undermines the reciprocity of the patient/clinician relationship, and this explains why delirium care is so often substandard. The absence of normal agency in the patient is what increases the burden on health care staff, and the difficulties it introduces are associated with reduced quality of care and the consequent infliction of unintended harm, something that Martinsen (Reference Martinsen2011) describes as “harm in the absence of care”. Martinsen stresses that harm of this type is not deliberately inflicted; rather “it is caused by the absence of active beneficent participation in the relationship between physicians and patients” (Martinsen, Reference Martinsen2011). The absence of beneficent participation on the part of the carer can be explained as the result of a perceived lack of analogous participation on the part of the patient, when the delirious person is perceived as deliberately uncooperative, either characteristically or uncharacteristically, or as being unable to participate. Thus, the lack of agency and altered self-expression caused by delirium interfere with the clinician’s ability to perceive the patient as a self who is worthy of care, which can result in patients being labelled with the behaviours they exhibit. This can even occur to the extent that the patient is no longer perceived as a self at all, which opens the possibility of mechanistic dehumanisation (Francis, Reference Francis2013, Haslam & Loughnan, Reference Haslam and Loughnan2014). Under the increased burden of care, and especially when the sufferer’s self is no longer recognised, the focus of clinical staff may be reduced to managing a delirious patient’s behaviour, in contradiction to the principles of person-centred care (Kitwood, Reference Kitwood1993, Mitchell & Agnelli, Reference Mitchell and Agnelli2015). This would explain the findings from reports into hospital failings, where patients with delirium have been given antipsychotics to simply quell their behaviour, rather than assessed to determine and manage its causes (Francis, Reference Francis2013).

In sum, it is because delirium affects sufferers at the personal level that it is especially complicated, variable in presentation, and challenging to manage. This is what undermines a carer’s ability to identify and empathise with patients, and decreases levels of participation in care, both for the patient and staff. Together, these factors greatly increase the risk that the patient will be dehumanised, becoming an object of medical intervention and/or behaviour management rather than a person requiring treatment. Ultimately, this results in a level of care that falls well short of desired standards.

Addressing the problems that lead to dehumanisation and therefore substandard care is far more challenging than addressing those stemming from a lack of knowledge or institutional attitudes. We will discuss a range of approaches aimed at “re-humanising” the delirious patient: reconceptualizing the self, and adopting an “ethics of care”.

Re-humanising the Delirious Patient

Implications for Care in Delirium

By reconceptualizing delirium as a disturbance (versus a loss) of self, it follows that as long as overall homeodynamic stability has not been irretrievably lost, some aspect of the self remains present. Just as one or more broken bones would not, in all but the most extreme cases, be taken to indicate the loss of a person’s skeletal structure, the disruption of one or more aspects of the self does not automatically indicate a loss of self tout court. More importantly, if the basic functions of the core self remain, the experiencing self is still present. Therefore, although the disruption or changes in agency and the expressive aspects of the autobiographical self that are entailed by delirium interfere with recognition of the self by others, the absence of these usual markers of self should not be taken to indicate the absence of self per se.

To avoid delirium sufferers losing their subject status in the eyes of clinical staff when they cease to be regarded as active participants in their treatment program; that is, to avoid their becoming mere objects of medical intervention and behaviour management strategies, it is essential for staff to understand that the patient’s core self is (largely) intact (Johnston & Malabou, Reference Johnston and Malabou2013). To put this more simply, even with patients in the most floridly pathological states, carers must keep in mind that the abnormal conscious state of a delirious person indisputably remains a human experience. The thoughts and behaviours that manifest during delirium are inherently “non-self”, insofar as they do not relate to the patient’s habitual self-understanding or way of being, but not insofar as they no longer relate to his/her self at all. Indeed, the patient, too, is responding to his/her behaviour problems and the abnormal mental state driving them (Kristjánsson, Reference Kristjánsson2010). Delirious patients’ symptoms should therefore still be treated empathetically, the more so because the experiential nature of these symptoms is universally unpleasant. As we have discussed, the disturbance of consciousness means that they experience the world and even their own minds as alien. The expressed pathologies of delirium are challenging but ideally, the carer must be able to look past them to where the person still resides.

A second important implication relates to the behavioural aspect of delirium. It becomes clear under this description of the self how and why the changes in “lower” physiological processes that are associated with, or cause, delirium have such wide-ranging and significant impacts on these persons as we generally think of them (i.e., on the autobiographical self); the delirious patient’s experience of his/her own body and environment, on which his/her ongoing sense of self crucially depends, is severely disrupted. This, in turn, shows why apparently simple tasks such as walking may be so much more arduous than normal, and why such effects cannot be addressed by means of the executive cognitive functions associated with the autobiographical self (i.e., by the patient employing intentional action or “making an effort”). The orderly relationships among the various CNS systems required for executive control cannot be restored through an effort of will, not only because willed action requires these interactions to be largely intact in the first place, but also because their disruption stems in part from disorder in the underlying systems on which they depend.

The expanded view of the self thus also makes it clearer that the delirious patient is not ultimately in control of, or responsible for, the behavioural aspects of the disorder. Currently, for example, it is common for a delirious patient to be labelled as “the poor historian” or suffering from “acopia”, both pejorative labels that stigmatize the patient. Downstream in the rehabilitation process, the patient may be deemed “non-compliant” or “unwilling to participate” in processes that would otherwise be contingent for a good recovery, such as mobilising during physiotherapy sessions. Reconceptualizing the self would facilitate the recognition that, in reality, it is likely that these patients may have impaired communication and be unable to participate, rendering them especially vulnerable. Indeed, the inability to complete performance-based tasks has been consistently shown to be a poor prognostic sign (Eeles, White, & Bayer, Reference Eeles, White and Bayer2009). The Maslovian hierarchy of need in delirium (basic requirements for compassion, comfort, dignity, familiarity, food, and fluid) is present but largely unmet, although the external signals of its deficiency may be less obvious (Eeles, Davis & Bhat, Reference Eeles, Burianova, Pandy and Pinsker2017). Therefore, the basic needs of the “fractious and demanding” patient with delirium must be proactively identified and addressed, primarily to reduce the impact on their weary selves who desire the return of coherence and normality to their consciousness more than anyone else.

In sum, the common reductive view of the self carries the risk that the expressive and behavioural disruptions entailed by delirium are taken to indicate uncooperativeness or even an absence of self, which is associated with mechanistic dehumanisation of the sufferer and substandard care. Adopting an expanded view of the self would facilitate recognition of the part of carers that the delirious patient’s self is disrupted rather than absent, as well as highly vulnerable, so that his/her prospects for recovery are more than usually dependent on the quality of care that he/she receives, as shown in Table 2.

Table 2: Problems in delirium care, causes, and suggestions for change

Approach Two: Adopting an “Ethics of Care”

“Re-humanising” the delirious patient aims to improve recognition of patients’ selves, in spite of their subverted self-expression and agency, by expanding the concept of self and attempting to develop relevant experiential knowledge. Given the crucial role the normal markers of the autobiographical self play in interpersonal interaction, however, achieving such recognition may potentially be difficult. A supplementary approach for preserving the patient’s dignity would be to adopt an “ethics of care” model. The “ethics of care” approach is particularly well suited to respond to the ethical challenges posed by the unique needs of the individual with delirium in the health care context because it is less dependent on recognition of the agent-self and, instead, focuses on the relationship between clinicians and care-receivers. In particular, it provides moral guidance for clinical practice by helping to clarify the grounds for the relationship between clinicians and patients, especially as it relates to addressing the particular needs of patients affected by delirium (Teodorczuk, Mukaetova-Ladinska, Corbett, & Welfare, Reference Teodorczuk, Mukaetova-Ladinska, Corbett and Welfare2014).

As we have outlined, a key factor in the dehumanisation of delirium patients is their reduced capacity to participate in the patient–clinician relationship. An ethics of care approach de-emphasizes the reciprocity of relationships, and is grounded in the normative assumption that we are “morally addressed” by the vulnerability of others (Vukov, Reference Vukov2017). To be addressed by another’s vulnerability is to experience, in Held’s words, the “compelling moral claim of the particular other” (Held, Reference Held2006). Thus, it is to feel oneself relationally bound to attend to, and meet, the needs of that particular other for whom one takes responsibility within the context of a specific relationship.

This formulation reveals three things about an ethics of care approach. First, it accords centrality to the relations of interdependence that bind us to one another. In other words, it invites us to conceptualize people as affected by, and involved in, relations with others, rather than focusing, as many traditional moral theories do, on a capacity for independent and autonomous interaction based on rational decision making (see Appendix 1). Second, it is committed to a contextualist approach to moral judgment: cultivating moral understanding about how best to respond to the vulnerability of the other requires finely grained perception and reflection upon actual circumstances, and an ethical response to the other that is sensitive to his/her particular needs. Finally, it insists that a person’s moral reflections, his/her thinking about what to do in a specific situation, need to be motivated by the right reasons; namely, by care and concern for the other’s well-being. Care ethics thus sees emotions such as sympathy, compassion, empathy, sensitivity, and responsiveness as valuable sources of understanding about what morality requires. Because care ethics promotes emotional responsiveness to the needs of others as a valuable source of moral guidance, it is better able to articulate the immersed perspective of the moral agent engaged in caring practices than are moral theories that emphasize the impartial standpoint of the detached, objective moral theorist. In other words, it makes explicit the unavoidable (inter)personal facet of the relationship between caregivers and care-receivers.

Under this approach, then, care may be defined as:

1. (1) A value, which guides our decisions about how to act by focusing our attention on caring relations and how to improve them;

2. (2) A disposition, manifest as an attitude of responsiveness to vulnerability and need;

3. (3) A virtue; namely, a cultivated skill set for responding to patients with empathy, compassion, attentiveness, sensitivity, and respect; and

4. (4) A practice of self-consciously engaging in caring relationships.

Care under this definition, according to Held (Reference Held2006), has “attributes and standards that can be described but more important that can be recommended and that should be continually improved as adequate care comes closer to being good care”. Thus, to count as a good practice of care, caregiving must alleviate illness or meet specific needs. In the context of the person with delirium, the care ethics approach shows that good care must begin with an acknowledgment of the extreme vulnerability of the sufferer. It is, understandably, easier to be caring and empathetic towards someone who is cooperative, congenial, and grateful for the care provided. However, clinical staff must learn to recognise the taxing behaviours often involved in delirium as indicators of a helplessness that requires increased rather than decreased attention, responsiveness, and respect. A deficit in the patient’s participation calls for an expansion of the clinician’s participation in order to form and maintain a therapeutic relationship (Held, Reference Held2006). An ethics of care approach makes this clear, and shows how explicitly and self-consciously addressing various aspects of the caregiving relationship, rather than the individual capacities of the patient or carer, can improve care (see Table 2). Aside from assistance with diagnosis, family engagement may help to ground clinicians from all quarters and help amplify the voice of the delirious patient (Neville, Reference Neville2006) to re-humanise the patient (Neville, Reference Neville2008).

Synthesis of Key Problems and Recommendations

What are the clinical implications of this philosophical exploration? Overall, there are three central considerations for ensuring quality care for patients with delirium.

1. (1) In terms of diagnosis, clinical staff need to recognise that the behaviours of a delirious person are crucially non-self (i.e., they are not normal in the elderly, and also out of character for that particular person).

2. (2) With regard to quality of care, clinical staff first need to recognise that insofar as the behaviours are non-self, they are not intentional or something for which the patient can be held ultimately responsible. Delirious patients’ lack of participation in their care is out of their control, and in fact indicates significant vulnerability. It therefore should be met with increased, not decreased, participation on the part of carers.

3. (3) Clinical staff also must recognise that the presence of non-self behaviours indicates a (radical) disruption of self, rather than the disappearance or absence of self. As long as the processes that constitute the proto- and core aspects of the self retain sufficient integrity to continue functioning, the core, embodied self remains, and again is peculiarly vulnerable.

In practice, as we have described, care of the delirious patient can fall short in a variety of ways for a range of reasons, and we have outlined a number of principles for change based on these understandings as shown in Table 2.

Practical Solutions

Re-humanisation through an ethics of care approach is not just an abstract concept and can be implemented using an array of practical solutions.

Simulation Exercises

Altering perceptions through simulation exercises may help to improve understanding of delirium. Simulation exercises would “flesh out” the conceptual understanding of the loss of self with the experiential aspect that is so crucial to clinical care (Eeles et al., Reference Eeles, England, Armstrong, Pinsker, Pandy and Teodorczuk2018).

Learning Packages

Learning packages in the form of interviews with patients who describe the experience of delirium from a position of clarity after resolution of the disorder can be powerful instruments (Teodorczuk, Harrison, & Laverty, Reference Teodorczuk, Harrison and Laverty2011). The viewer can recognise the intensity of the experience and just how unpleasant it can be, which can help promote empathy for future cases. Certainly, in the nursing field, sharing of lived experiences in an effort to conceptualize alternative future possibilities has been shown to be an important educational tool in delirium care (Bélanger & Ducharme, Reference Bélanger and Ducharme2012, Reference Bélanger and Ducharme2015). The individual is seen with a sense of personhood, with humanity and dignity intact. On this basis, pathological behaviour is acknowledged as an aberration, as extrinsic to and outside of the control of the sufferer, enabling person-centred treatment.

Staff Support

The personal impact of the increased relational demand, and the unconscious effects it may elicit are important to reconcile. We have cited the physical and emotional toll that caring for a delirious patient has on nurses. The increased burden on carers must be accounted for in work practices, and appropriate support for staff put in place. This support should be multidisciplinary, because, after all, delirium is everybody’s business.