Critical illness as a biographical disruption

Introduction

Critical illness as a biographical disruption in intensive care and beyond the critical event is an emerging epidemic which is almost unnoticed by health care professionals. ¹ Despite increasing data about the growing number of survivors whose lives are affected by sequelae of critical illness, ² not much has been done to address the survivorship issues patients and their families are confronted with. Although many associate critical illness with intensive care units (ICUs), the reality is that patients continue to suffer from effects of both the critical illness and the experience of critical illness treatments they undergo in ICU.^1,2 Therefore critical illness, disrupts one’s existential being, both during ICU hospitalisation and long-term recovery phase leading to profound issues similar to those in chronic illness such as ‘loss of self’ and identity.^3–5 While induced unconsciousness and technology facilitate treatment, they have a detrimental effect on the immediate and long-term existence of the patient. Patients in ICU experience biographical disruption when unconscious; during this period, the patients experience severance from the world. ¹ Following this period, the patients undergo a discovery phase and find themselves confined to a strange ICU environment, restricted by lifesaving devices. These phases highlight the nature of critical illness as a biographical disruption. With increasing survivorship, there are many patients whose health related quality of life (HRQoL) has significantly declined with detrimental effects on their biography and that of their families. ⁶ Although Bury, Charmaz and Van den Berg have written about chronic illness and illness in general as biographical disruptions previously,^3–5,7,8 literature on critical illness as a biographical disruption is limited. This paper highlights the nature of critical illness as a biographical disruption and offers suggestions on how patients and families whose biographies have been disrupted through critical illness can be helped.

What is critical illness?

It is a lived experience that occurs without warning, ¹¹ often taking the sufferer by surprise. It does not only affect the sufferer but also their family. Critical illness is disruptive and alienating. ¹ Critical illness is a life threatening event that affects a numerous number of people per year. For instance, between 2013 and 2014, 160,000 people suffered from a critical illness of which 38,780 (public) and 8829 (private) underwent sedation and mechanical ventilation in Australia and New Zealand. Individuals who are critically ill often discover themselves in the ICU after being in a coma for a few days or even weeks; this situation leads to a state of confusion that may be momentary or lasting. ¹ Medicalised accounts of critical illness fail to recognise its significant impact on individuals, their embodied sense of self and their ability to move on with their lives after being discharged from the hospital. Critical illness disrupts routine and daily life at home and work, involving time-consuming treatment management. ² It disrupts biography.

What is biographical disruption?

The word biography is commonly defined as the history of a person’s life written by someone else, and the word disruption means a disturbance or problem that interrupts, causes confusion or impedes progress of something or an event. These two words combined in the context of critical illness mean that critical illness interrupts, impedes and at times stops the progress of a person’s life. This could happen in various ways, including shattering one’s dreams and aspirations for the future. ¹

Critical illness disrupts the fundamental structures of a person’s daily routine and knowledge and replaces the person’s taken-for-granted way of existence with suffering and pain. ¹² In addition, critical illness foregrounds death, ¹³ which is considered as a distant reality in a healthy life and is considered to mostly affect others.^7,14 The event heralds an attack on the person’s physical self and sense of identity, ⁴ introducing uncertainty and confusion about self-worth in that individual. ¹ Confusion is compounded by a state of unconsciousness that the critically ill person often undergoes during the initial phase of ICU hospitalisation. From a phenomenological point of view, critical illness essentially affects intentionality.

Intentionality as biography

Intentionality as biography is a continuous communication that the conscious body has with its world through perception. ¹⁵ The world is composed of the body in which we exist (corporeality), other bodies with which we relate known as the lived other (relationality), the time (temporality) in which biography is determined and the space (spatiality) in which the body, lived others and time perception exist. ¹⁵ From perception the story of our life is made. Without perception, intentionality as biography is fractured or stopped. ¹⁵

The nature of critical illness

Critical illness fractures/breaks the intentional arc of the patient. ¹ Not only does critical illness disrupt the fundamental structures of a person’s daily routine and knowledge, replacing their taken-for-granted existence with suffering and pain, it also throws them in a state of helplessness, hopelessness and sometimes despair.

We exist in the world in a state of ‘thrownness’. ¹⁶ By using the term thrownness, Heidegger refers to our taken for granted state of existence in good health and the state of being drawn to and interaction with the world, ¹⁶ a state of being at home with ourselves in our body. Critical illness impinges on our state of thrownness in the world and leaves us in a state of homelessness and alienation from our body. The patient becomes conscious of physiological activities that are usually subliminal. In addition, critical illness portends death, ¹ the heightened awareness and struggle of ones subliminal activities to maintain maintain life actually portends death which is usually a distant phenomenon in a healthy state.^7,16 Critical illness heralds an attack on the person’s physical self and sense of identity, forcing the patient to feel a sense of worthlessness and of having no future. ¹ It robs the patient of familiar environments.

Critical illness places patients in a strange ICU environment with advanced technology, where the ICU technology coupled with the effects of critical illness impinge on the patient’s relationality, temporality, corporeality and spatiality. ¹

Being unconscious as a biographical disruption

The state of unconsciousness during Critical illness has a way of severing a patient from their world and dislocating them as it brings them back to the world of perception as evidenced by many accounts of several patients not remembering/knowing what happened to them.^1,13 Patients are often thrown into a state of confusion and isolation as they try to make sense of what has happened to them that led to and during their unconsciousness. In this state of confusion, the world is not perceived in totality. Having had their intentionality fractured, many patients find themselves in an ICU, emerging from a state of unconsciousness, without knowing how they got there, what happened to them with no idea how and when they were connected to the ICU technology.^1,13 Knowing is our way of being in the world. The effects of drugs administered to facilitate treatment, coupled with those of the catecholamines produced by the critical illness pathophysiological process, serve to distort one’s perception of time. Most patients view the state of unconsciousness as a major biographical disruption because it robs them of both objective and subjective time, leading to confusion and uncertainty about the future, ¹³ thus impinging on their temporality (lived time). One example is an excerpt from Tembo’s study: ¹

I wake up distressed in the middle of the night and a lot of that’s got to do with, I don’t know what’s real and what isn’t. So, I have to ask Peter, did that really happen? Did they really do those things to me or am I imagining it? And he’ll either confirm or deny what actually happened to me because I’m not sure. So, it is left you know, I don’t sleep well yet. I expect that it will get better.

Dreaming is embedded in temporality, ¹⁷ consequently forming biography. ¹ Being denied dreams during the critical illness adds another impediment to continued biography in the state of unconsciousness. Although some patients find comfort in not knowing what happened to them in the ICU, others want to remember for the purpose of continued existence, and they fail to make meaning out of that time. The importance of dreaming in one’s biography was succinctly revealed by a patient from Tembo’s study, ¹ who contrasted two illness episodes of her life as follows:

No dreams, no going to heaven; that’s strange… long time ago I had cancer… So, just before I went into theatre my grandmother had passed away… She came towards me at the end of the bed and said, ‘You’re going to be right, you’ll be alright you’ll see—you’ll be alright it’s not your time to come. And I got over that and I often think of that; I can remember that. So having had no supernatural experience, it was just as if you were floating all of the time—lifeless but no experience.

Dreaming happens in time. Lived time even though it is time of forgotten self and lost sense of time, ¹⁷ as temporality is a fundamental aspect of our existence because lived experience is embedded in time present, past and future. ¹⁵ The succession of time from past to present to future is what constitutes our biography; the past being our memory, the present being the now and the future being what is to come—collectively known as lines of intentionality. ¹⁵ The experience of critical illness takes place is subjective and objective time. It is fundamental to realise that each individual experiences the world from their situated context, ¹⁴ critical illness being no exception.

The situated context emanates from the present which then becomes the past that constitutes the way the person perceives similar events in the future. The present, as a part of the lines of intentionality, is a fundamental aspect of biography. The present (the now) is different from other existence because of the characteristic presence, i.e. the perception of oneself and the world around. ¹³ When considering the situation of critical illness, this kind of existence (presence, the now) is sometimes not given to the sufferer through the state of unconsciousness. ¹⁵ Inadvertently the past as it should account for this part of biography is absent for some people because they cannot account for it. ¹ Although the past is embodied as a memory, it forms our situated context, the way we perceive the world. ¹⁵ The present, past and future are embedded in lived time known as temporality. ¹⁵ It is in this context that we discuss temporality in relation to biographical disruption. Unconsciousness fractures intentionality by disturbing the perception of time and robs one of continued existence and disrupts one’s biography. For if the present constitutes our past and determines our future perception of the world, unconsciousness throws people into uncertainty; although some patients find the failure to remember less traumatising, others are immensely affected as they consider not remembering as a loss of their grounding in existence. ¹ For the critically ill the state of unconsciousness robs them of the possibility of making memories and consequently their identity. Merleau-Ponty points out a similar situation and likens a life of not knowing to a prenatal life as one cannot recall what they do not know or experience. ¹⁵ Knowing, being in tune with ourselves and the world around us makes memories for the future.

Memory is existence; without it we cease to exist. Similarly, Bunuel stated about his mother’s fading memory: ¹⁸

You have to begin to lose your memory, if not in bits and pieces, to realise that memory are what make our lives. Life without memory is no life at all… Our memory is our coherence, our reason, our feeling, even our action. Without it, we are nothing.

Sedation/unconsciousness or critical illness, after all its sequel can become a way of life with the sufferer adjusting to their circumstances, how can health workers help patients deal with their sense of disruption? We know that medical treatments alone do not reconcile patients with their personhood. Merleau-Ponty talks about freedom as the ability to adjust and master our circumstances and so while others can live with this sense of disruption, others cannot and need help to live with their sense disruption.

In the ICU environment, unconsciousness, though it disrupts one’s biography, it is a necessity for facilitation of treatment that constitutes technology as an embodiment of the critically ill patient in ICU.

Being attached to technology as a biographical disruption

While technology is used to maintain and save life, it disrupts biography at various stages of the critical illness trajectory. Critical illness subjects the patient to ICU technology such as the endotracheal tube (ETT), being tethered with monitoring cables, central venous and arterial lines, indwelling catheters, the gowns including the sedation and analgesic drugs used to facilitate treatment, monitoring and tolerance of treatment modalities; which causes biographical disruption in various ways. Monitoring cables, drugs, gowns, immobilise the patient, preventing the performance of his/her taken-for-granted way of existence. The embodiment of the often-inserted ETT makes it difficult to talk and relate with others even with communication tools and bodily cues. ¹⁹ Breathing becomes difficult as one panics and fights to breathe when the tube is in the throat. Breathing sustains life, it is a reference point between life and death, and anything that threatens it threatens and disrupts one’s existence. The presence of and attachment to technology and the noise that technology emits with every movement the patient makes renders it difficult and frustrating to change positions in the ICU bed and as such, compounds the problem of relating to others. ²⁰ Technology disrupts the norms of communication and reciprocity of family relations.^13,19 This is evidenced by a participant in Tembo’s study, ¹ who said,

I couldn’t breathe with that tube stuck in my throat. I panicked. And that was the frightening part because I couldn’t relate to anybody. When I went to write, I couldn’t my hands were too weak I could only scribble… pretty frightening because the questions you want to ask: what happened? What happened to me? What am I doing here? How did I get here?

Cognitive impairment as a biographical disruption

Critical illness subjects most ICU survivors to functional and cognitive impairment. One in four ICU survivors suffers from cognitive impairment,^21,22 thereby disrupting their biography. Patients continue to suffer from nightmares, memory loss, altered voices and other physical such as reduced functional capacity needing help with activities of daily living from care givers ² and psychological sequelae such as anxiety and post traumatic disorder,^23,24 placing a burden on the patient and family long after ICU discharge. The experience shutters their dreams (their aspirations for the future). Cognitive impairment affects most critically ill patients, initially because of sedation and analgesic drugs as well as catecholamines produced by the disease process and subsequently by the sequelae of the critical illness experience, which impinges on the thought processes and memory function of patients, thus disrupting their biographies. With regard to cognitive impairment, we discuss the subject of simultaneity as an existence. We discuss simultaneity as ‘being there’; understanding what is going on within oneself and the world around oneself as maintaining intentionality. ¹⁶ One may be present in the corporeal way without necessarily maintaining their being intended towards the world which in everyday life we refer to as ‘there is no body home’. Therefore, it is in the presence of Dasein (person) that the world exists for them, ¹⁶ and as such it is in this sense that cognitive impairment in critical illness is a biographical disruption. Without simultaneity there is no lived life per se, as critically ill patients are not entirely present to themselves, to others and to their environment. Their functional ability is also impaired, ²⁵ thus disrupting their biography the way they expected it to be.

Functional impairment as a biographical disruption

Functional impairment brings into focus the subject of motility as an extension of existence which results in a perceptual habit through which one creates and grasps the world. ¹⁴ Motility is an acquired extension of bodily synthesis through which we acquire a style of existence by combining live-through meanings, which shift us towards equilibrium. ¹⁵ Motility and perception are intertwined and together elucidate the intentional arc, ¹⁵ which is fractured during critical illness and beyond when a patient experiences cognitive or functional impairment, disrupting the person’s biography. The extent of functional and/or cognitive impairment not only disrupts the routine of patients but also dislocates them from their homes and family environment to nursing homes or rehabilitation units, including chronic critical illness facilities for those who are ventilator dependent.^2,6 Impairment in physical function robs patients of taken-for-granted existence in which they tacitly attend to their activities of daily living, such as eating, drinking, showering, dressing, toileting and mobility. This kind of existence impacts the emotional well-being of the patient, resulting in depression, anxiety ² and emotional distress. Less than 12% critical illness survivors with cognitive and/or functional impairment live independently after ICU discharge and survive up to one year after their critical illness experience. ²⁶ While some patients adjust to their new biography, there is limited literature about the meaning these patients attach to their experience. Because the patients cannot communicate and often die within a year post ICU discharge, ² it is difficult to know what the disruption means for them. The changes patients go through affect the family dynamics by placing emotional, physical and financial burdens on them, consequently collectively disrupting their biographies.

Family burden as a biographical disruption of critical illness

Critical illness places a burden on the critically ill patient, thereby disrupting family dynamics of the patient. Biographical disruption here is more pronounced by impinging on relationality as a mode of existence. ¹⁵ We are relational beings with needs and responsibilities in our existential circles, particularly in family and work structures. Therefore, in terms of responsibility, critical illness disrupts support mechanisms of the family structure and causes the patient and their family to re-examine their future. This is evidenced by numerous studies.^1,13,27,28 Family burdens vary, depending on the position of the critically ill patient in the family. For instance, a man (George) from Tembo’s study was worried about the fiscal situation of his family and said, ¹ ‘I was worried about who was going to pay the rent and the bills. I am the one who handles these matters’; a woman from Zeilani and Seymour’s study was distressed about not being able to care for her children and said, ²⁸

I could not see my children. You know the mother’s feelings. I used to think about them all the time, how they were, what they ate, who would help them in their studies. It is difficult, my dear, to leave your children and stay in the hospital. Children need a mother, to love and care for them.

On the other hand, biographical disruption imposed on family members includes an overload of caring for the sick person, which results in caregivers suffering from emotional and physical distress. Biographical disruption extends to family members in various ways. For instance, almost 84% caregivers give up work to care for their loved ones. ² In addition, many patients and their families suffer financial loss, such as income and savings, including a decrease in income, particularly if the patient is not insured. ² Depression, financial and practical burdens are forms of biological disruption among both institutionalised and home care patients and their families. ²⁹ The effects of critical illness as a biographical disruption not only impact patients and their families but also place a burden on the health care system. The fact that family members find it necessary to forfeit paid work to look after their critical illness survivor, highlight the nature of biographical disruption that critical illness causes for the patient and his/her family.

Discussion

This discussion takes a phenomenological stance for two reasons, vis a viz phenomenology gives meaning to our existence and, secondly, because critical illness as a biographical disruption is an important existential event that places the patient and family in a desperate situation. ¹ In keeping with existential phenomenology, this discussion refers to human being as Dasein, which essentially is existence/ordinary existence or being human and open to possibilities of existence. ¹⁶ From a phenomenological lens, phenomenology lends experience as a fundamentally embodied phenomenon. ¹⁵ The notion of perception also lends itself as a subjective or rather fluid phenomenon because it changes depending on one’s context. ¹⁴ Despite the plethora of emerging literature purporting that many survivors of critical illness in ICU are not without sequel, ICUs remain largely driven by the Cartesian paradigm that focuses on the physicality of the patient thus divorcing the mind and indeed the whole person from their usual world. As much as the physical body represents Dasein in the world, ¹⁴ physical abnormality does not only affect the external factors of the person’s existence but also the embodied self and as such the way of being in the world. ³⁰ Although Merleau-Ponty purports that illness as an external invasion of the body becomes embedded internally and becomes a part of one’s existence, ¹⁵ my argument is that the process of adaptation to the new existence is both physically and emotionally painfully challenging. It is for this reason I argue that critical illness is a biographical disruption that is unwelcome. It leaves a person and their family in a state of disarray, ²¹ before they get to the point of acceptance and adaptation to their changed way of life.

Critical illness often disturbs the fundamental structures of existence of the critically ill person and loved ones.^1,21,28 We exist in the world in a state of thrownness. ¹⁶ If thrownness is the awareness of who we are as beings, then essentially all aspects of our being are brought to the fore during critical illness as opposed to the taken-for-granted state in which we exist in good health.^1,13,31 The narratives of some ICU survivors highlighted above are in keeping with Van den Berg, ⁸ Satre, ¹⁴ Merleau-Ponty, ¹⁵ and Van Manen, ³¹ who purport that illness makes us conscious of our body, foregrounds death and disrupts routine. For instance, physiological biographical disruption can take various forms, such as disruption of breathing. Breathing as a subliminal act of life; it is life itself. ³⁰ It maintains preserves and enhances life. Hence, any alteration to the subliminal state of maintaining life is a biographical disruption. The disruption of breathing related to the presence and aftermath of having an ETT in a critically ill patient is in a way validated by Van Manen’s story about the experience of Sasha and her mother during an asthmatic attack in which breathing ceases to be a subliminal act and becomes a matter of urgency and a fight against death. ³¹ For some patients this disruption extends to the way of actualizing themselves in this world after ICU, for example, giving up singing ¹ because they have been stripped of the very activity that enables them to reach out to the world and to other Dasein because of vocal cord damage, arising from the very device (ETT) that was intended to sustain life during critical illness moving them from the lived state of possibilities ‘I can’ to that of impossibilities of ‘I cannot’ state. ³² Although breathing normally occurs without our conscious intention, it can be a conscious and controlled act in which a person can employ it to experience the world differently depending on the temporal state they find themselves in. ³³ Temporality, as discussed above, is the way subjective time is experienced. ¹⁵

Temporality is an organised structure with three separate elements which in themselves are structured moments of an original synthesis. ¹⁴ It is a totality which places meaning on its secondary edifices. The past as an element of temporality is not an end in itself. Sartre argues that the past does not cease to exist but is ‘dormant’ in its place of eternity, thus restoring Dasein to the past. ¹⁴ Consolidation of this past and Dasein is marked by duration, which in itself is multiplicity of interpenetration, with the earlier modelling itself in the present. ¹⁴ The assertions by Sartre elucidate how coherence and continuity of a being’s biography (existence) is maintained. However as highlighted above, critical illness disrupts biography when the patient is in an unconscious state. In that state there is no experience of the present that is stored as a past for the future present in which it would be ‘reborn’ or brought to the fore for Dasein, and therein lies the basis of biographical disruption. To this end Sartre asks a fundamental question which is pertinent to the assertion of biographical disruption: ‘If the unconscious is inactive at the present temporal sphere how can it become available to consciousness at the future temporal sphere?’ The past is our facticity, it is our essence, what and who we are. ¹⁵ Hence when relating to the topic of biographical disruption, unconsciousness disrupts biography because there are no memories made when intentionality is fractured or severed. ¹

The presence is the being of Dasein, being present in an ontological way, that is, simultaneity to oneself and the surrounding world, which includes the lived other. ¹⁵ Being there is not the same as being present, because one can be present to the lived other in a corporeal way and not be there for themselves; ¹⁵ in the same way the unconscious patient in an ICU bed can be present to the ICU staff and family and yet not be present to themselves. This is the biographical disruption. What’s more, in that instance, Dasein ‘for-itself’ is unable to make a past and a future coherently even though he/she was present in that ICU bed. By being present to oneself the being is juxtaposed between what he/she is not (i.e. the past which has receded in the moments of existence and the future toward which he/she is being propelled, thus maintaining existential coherence (a phenomenon which is fundamental to coherence and maintenance of one’s biography).

The future is a possibility towards which Dasein is intended. ¹⁴ The future is only possible for Dasein because it is available in the ‘to be/not yet in the present’ to which Dasein is present in the for-itself. The future we can say is the dream or aspiration that the being has yet to live/realise. For the critically ill patient in the ICU who is not present to himself/herself, the future does not exist, thereby disrupting temporality. This being’s biography is enveloped in temporality and he/she exists in a corporeal way, relating to the lived other in the temporal sphere. The absence of Dasein from the ‘for-itself’ creates a fluidification of existence in that the being becomes uncertain and unsure of oneself and the future. ¹⁴ Essentially the being loses grounding in the world.

Having established that critical illness is an existential threat that results in biographical disruption, what are we to do about it? The answer lies in the fact that though critical illness cannot be avoided, the manner in which the existential/biographical disruption is handled is what matters most. Individuals need to regain their grounding in the world; this they cannot do on their own. Assistance is needed from the health care system.

While modern-day technology and innovative practices have improved physical outcomes of critically ill patients,^21,32 it has concealed the severity of continued biographical disruption for most ICU survivors. In highlighting critical illness as a biographical disruption, our focus should not be on the legitimacy of modern-day treatment in facilitating survivorship as opposed to death, but on how to provide optimum holistic care that stays with the patient throughout the trajectory of critical illness, ensuring that all facets of patients’ existence receive attention. Because critical illness is a biographical disruption that affects not only the patient but also the family, our model of care must recognise the needs of both the patient and the family and provide support to them as needed. Fiscal constraints of health care systems cannot be helped, but this very challenge invites us to create more robust ways of meeting the existential needs of patients and their families, including research that addresses the predisposing factors that contribute to long-term biographical disruption wherein patients are relegated to either long-term health care facilities or home care.

Models of care that address immediate biographical disruption such as psychological needs in the ICUs are necessary, as these will prevent long-term complications. For instance, management of patients and their families should be individually tailored rather than focusing solely on fixing the pathobiological and pathophysiological needs only. The gnostic mind-set of fixing physical manifestations needs to be blended with the pathic aspect of caring.^1,20 The presence of family members and social workers in ICUs is fundamental to a continued caring attitude that looks out for psychological distress in the patient.

The important issue here is legitimation of the patient’s biographical disruption, in the sense that medical science objectively legitimizes critical illness in ICUs but fails to meaningfully recognise psychosocial needs. Even when those needs are identified, medical science addresses aspects of biographical disruption in critically ill patients by naming the symptoms and treating them with drugs or referring those patients to another health care provider. This in itself does not address the deeper needs of the patient. Despite the well-meaning intent of all the medical treatment, it is limited in that patients’ deeper problem is the separation of self and disease, the experience of invasion by disease and a dissociation from the usual self and responsibilities that they normally have. ³⁰ Critical illness remains a complex biographical disruption that medical treatment is limited in addressing, because the feelings of patients are not fully explored and understood. Sending patients to long-term care facilities or discharging them to home care further highlights the complexity of critical illness as a biographical disruption and the limitations of medical care in this regard.

The disruption of the biographies of critically ill patients and their families is concerning, particularly because critical illness survivors do not have social support networks that bring them together with other survivors of similar biographical disruption to enhance legitimation and in some way facilitate adaptation to their new way of life. This begs the question in the light of support groups from which stroke and cancer patients benefit. The lack of models of care that address the needs of patients across the trajectory of their critical illness compound family and health care problems.

Conclusion

In conclusion, critical illness is a complex biographical disruption occurring in different forms at different stages of the critical illness trajectory. As such, the limitations of modern-day medicine are highlighted, which suggests that we consider models of care that facilitate holistic care of these patients throughout their trajectory of critical illness. While this approach is employed in some parts of the world, its benefit is anecdotal and more research into such interventions is needed.

Finally, until we find a place where the critically ill patient’s embodiment of technology and other ICU treatments results in a holistic positive experience that negates biographical disruption, the critical care environment will remain one of utopia versus dystopia.

Implications/recommendations