Critical illness is a sudden traumatising lived experience that affects the sufferer and their family throwing them into a crisis situation [1,2]. It is disruptive and alienating. Critically ill patients emerging from unconsciousness often suffer from confusion that could be momentary or lasting. There is an increasing number of critical illness survivors in intensive care units (ICU)1 with numerous life changing ongoing physiological and psychological sequelae from critical illness and ICU hospitalization, with inadequate ongoing treatment for ICU survivors. Medicalised accounts of critical illness fail to recognise the significant impact on the person, their embodied sense of self and their ability to move on with their life after they leave hospital. The main purpose of this study was to explore the experience of critically ill patients in ICU and beyond. This phenomenological study describes what it was like for twelve people to experience critical illness in ICU and in the months after discharge. The finding was that critical illness is an acute life threatening event with long lasting effects which translate into temporal and biographical disruption, imprisonment by the ICU and its therapies and being trapped in an alien body that is plagued by uncertainty and long lasting conditions arising from the critical illness and the ICU therapies. Critical illness survivors are left in a state of limbo characterised by a struggle to reclaim their precritical illness ICU identity and uncertainty about their future. Hence an overarching theme of being in limbo under which three major themes of 1) disrupttion, 2) imprisonment and 3) being trapped were generated from the study.
Numerous studies have examined the experience of critical illness [3-5]. Anecdotal evidence suggests that the experiences of patients have been consistent over time [
Approximately 130,000 adults are admitted to Australian ICUs each year [13,14]. Nevertheless this high survival rate has led to a burden on the patients, their families, communities and most of all the health care system [
Australia has an 86% adult critical illness survival rate [
In-depth face to face interviews were conducted with twelve participants at two weeks after ICU discharge and at six to eleven months later. In line with hermeneutic phenomenology thematic analysis using van Manen’s six dynamic interplay activities was used to interpret the data about the lived experience of being critically ill in ICU [
Participants in this study were recruited from a tertiary referral hospital ICU in New South Wales Australia. Participants were recruited with the assistance of the ICU Nurse Educator, the Clinical Nurse Consultant for Research, the Clinical Nurse Consultant in Quality Improvement, the ward Nursing Unit Managers (NUMs) and their staff. Both men and women who fulfilled the general and essential criteria for recruitment into the study were approached. Essentially the participants had to have been critically ill in ICU and mechanically ventilated for at least 24 hours with a good prognosis to ensure completion of the research by not dying during the research process. To ensure true informed consent and avoid misunderstanding in the research process, the participants needed to be able to speak English and had to be between eighteen years old and above. It was assumed that the participants were interested in sharing their experience if they signed the consent form after they had read the information letter. Once the consent was obtained, the recruiters forwarded the consent to the researcher who then contacted the participants and arranged for the face to face interviews. People with cognitive impairment and poor prognosis were not recruited in the study.
Data collection was conducted through in-depth face to face as per hermeneutic phenomenological tradition [
Ethics was approved by the Hunter New England Health Research Committee and the University of Newcastle’s Human Research Committee in December, 2007.
Data analysis was conducted using thematic analysis as per van Manen’s six dynamic interplay activities [
The overarching theme that captures the nature of the experience is being in Limbo with three major themes that have got subthemes of their own. Being in limbo was essentially characterised by disruption, imprisonment and the pervasive presence of death throughout the trajectory of the participants’ critical illness journey.
Being disrupted was a state of limbo in which the participants’ lives were suspended between life and death while they were unconscious. It was essentially being “absent” from the world.
“I was blacked out, I don’t remember anything... I only thought I was ventilated for four hours for some reason, I don’t know where that figure came from, that I thought I was only asleep for four hours—ventilated for four hours but I was asleep for three days... I didn’t know what was going on and I didn’t know how long I’d been there and I didn’t know what was happening.”
(Rosie 1st Int.)
Many participants believed they should have had memories of their critical illness situation, or at the very least dreams or supernatural encounters such as seeing bright lights or going to heaven (Keith 1st Int.) or other near death experiences. In the following exemplar, Moira describes the strangeness of not having her ideas realised while she hovered between life and death:
“No dreams, no going to heaven that’s strange, I’ve heard people say they know when they’re unconscious, but I didn’t ... I thought I would have an experience where I would go to heaven ... but I didn’t ...So having had no supernatural experience, it was just as if you were floating all of the time, lifeless, but no experience, no... It was strange.”
(Moira 1st Int.)
Trying to figure out was a feature of the participants’ initial preoccupation of being fully conscious. Most of the participants were unsettled by not knowing and not remembering what had gone on or how things had happened to them.
“Trying to figure out how long I was there for and who, who was coming in and out of the room and which, you know, where was I and things like that, trying to figure out what happened in that time when I was blacked out. I didn’t like not knowing what was going on and the tube in my neck, I don’t know how it got there.”
(Rosie 1st Int.)
Some participants described the period they were blacked out as lost time. Because time is part of how participants live and know themselves in the world, losing time created a sense of discontinuous existence for them. As Keith said;
Others found it strange to lose so much time.
“But I don’t remember the family talking to me or staying with me or nurses or doctors doing anything... And grandson came in and he was kissing and cuddling and talking to me and I love him dearly, but I don’t remember that... I would’ve had liked to have known that the family were there and caring and loving (and they’re always caring and loving, but this was extra special)//it is strange to lose so much time”.
(Moira 1st Int.)
Being imprisoned depicts the sense of limbo in which the participants experienced restriction and threat to their life during the wakefulness phase of their ICU stay. This theme further shows how the participants fought to stay alive and to keep in touch with the lived other. The main source of imprisonment and existential threat emanated from the endotracheal tube itself which was meant to be life giving for the participants.
Fighting for Life elucidates the descriptions and the meaning the participants attached to the experience of trying to save themselves from the life threatening events that they faced in ICU.
“The tube was a big thin//I couldn’t breathe with it. I wanted to pull it out//And I kept trying to pull the tube out of my mouth I felt like I just couldn’t breathe with it in there it was gagging me and I just wanted it out. I just wanted to pull it out. I can remember feeling that I wasn’t getting enough breath I thought I was going to suffocate. My fighting spirit kicked in I tried to pull it out”
(Monika 1st Int.)
Being Voiceless describes what it was like for the participants to be unable to speak.
“When I went to talk... I just couldn’t talk. And I thought, ‘what’s happened to my throat,’ like it is— someone’s taken your voice off you. I had a lot of questions to ask, but I couldn’t ask... you can’t ask a question because you’ve got this thing jammed in your throat and you want to ask, but you can’t ask and no-one’s telling you the answers that you want to know.”
(George 1st Int.)
Being trapped portrays the participants’ experience of their “disabled” post ICU self and their struggled to regain a sense of their previous identity.
Longing for the past was fundamental to the participants for various reasons but most of all for the purpose of interacting with others and for maintenance of their old self.
Being forgetful highlights the difficulties associated with getting on with life when they remain forgetful and have difficulty planning and carrying out tasks.
“I used to keep appointments but I forget a lot of things now. I forget meetings I’ve got to go to. I just forget all about things I’ve got to do.”
(Erick 2nd Int.)
Moira’s account was intriguing:
“I had to stop and think what my name was and I thought, you silly old woman, been married 58 years, you should know... So it’s just strange what does happen... Well you’re born and you’re given a name aren’t you? And you’ve had that all your life... Some days, if someone knocked on the door and said to me, ‘Mrs. X’ I’d look at them blank and think now, who’s that? That is a horrible feeling.”
(Moira 1st Int.)
Longing for normal sleep portrays how the participants continue to endure sleeplessness and the meaning it holds for them.
“No reason why whether it was the medication or the surroundings or what it was, just couldn’t get back to sleep. I just couldn’t... Like last night I think I woke up about half past 12 or something like that... Same thing I had even when I took sleeping tablets. You take one and I’m lying awake at the same time the rest of the night— no sleep, so no point taking them. I was told I shouldn’t be taking them anyway... It so desperately wants to sleep. Becomes annoying [sic]. And you don’t know why. You can’t understand it...One day I’ll get back to a normal nice sleep”.
(Keith 1st Int.)
Waiting for the familiar and reliable voice describes the experience of having to live with a different sounding voice and one that cannot be relied on when needed to speak. Most of the older participants in this study had a different voice or no voice at all. They spent a large amount of their post hospital time at least up to the time they were interviewed, waiting for their voice to become normal and reliable again. For most of them, their voices were hoarse and at times were reduced to just a whisper. They felt strange and that they had lost their identity:
“So there we are-in limbo. Oh, it is annoying. You know, you’re talking softly and people can’t understand or hear you. You’ve got to sort of repeat yourself and you know that it’s not your normal voice and I’ll get that one day. They say its three to four months (oh God!) but it is so annoying for yourself because you haven’t got your normal voice; you can’t talk normal to people and they can’t understand you a lot of the times; you’re talking too softly. That makes you become frustrated. The wife said, ‘can’t understand what I’m saying or hear.’ Give me time. I’ll talk properly, one day//Hopefully, one day too. I’ll be free.”
(Keith 1st Int.)
The most striking finding of this study is the continuing impact of the critical illness and ICU treatment experience hence the notion of being in limbo. Of concern is that phenomenon is not new. The distressing impact of being critically ill in the high technological environment of ICU has been highlighted before [3,5,23,24] and the experience of being mechanically ventilated has featured in other studies [25,26]. Others have identified difficultties associated with communication and the devastating impact on patients as they try to make themselves heard and understood [23,24,27]. Disturbances of consciousness such as no memory recall and delusional memories have also been highlighted [6,28] this means that there is something amiss that needs to be identified in order to change the experience of critical illness in ICU for the better.
Similarly, the participants’ reports of little or no recollection of their ICU experiences have been reported in literature [6,25,28,29]. This study’s finding that disrupttion causes fear, anxiety and vulnerability in critically ill patients in ICU is consistent with an earlier study [
Being tied to a bed, being unable to move, breathe and speak are findings which I discussed under the themes of bound and drowning, fighting to breath and being voiceless in Chapter Five. The finding of being bound and drowning in this study is supported by other studies [3, 25] studies whose participants described being unable to move [
Being in the dungeon is a theme that elucidates the participants’ descriptions of how they were isolated from the rest of the world. Being at the mercy of the ICU staff meant that the ICU equipment and its staff controlled the sustenance of their life. The participants had to call upon their survival instincts to carry them through their ordeal. At the same time the participants in this study realised that things could change depending on the circumstances as one participant said; you have got to do as you are told because they just saved your life// They have got you plugged to machines and it is in their hands (Ian). This kind of helplessness can evoke feelings of degradation where patients feel like objects [3,25].
This study has shown that critical illness and ICU hospitalisation impact the long term experiences of patients. What is lacking are effective systematic models of care that can provide continued care and support for critical illness ICU survivors. The need to develop models of care with guidelines that incorporate follow up care and ongoing support is urgent at least in the Australian context. Explanation and legitimation of critical illness survivorship needs to be included in routine care beginning in ICU and following through to services such as ICU follow up clinics and outreach models of care. Health professionals need to consider the impact of various practices and procedures on the well being of patients, not just in the short term but in the long term. Coherence is fundamental to our existence hence promotion of patient diaries at a larger scale as a means of dealing with disruption will help provide continuity in critically ill survivors. Similarly every effort to reduce the distress emanating from the use of restraints that bind and imprison critically ill a patient in ICU needs to be made to promote humane experience in ICU.
The failure of advanced technology and innovations in ICU practices lies in the increasing number of critical illness ICU survivors with negative sequelae that is placing a burden on the survivors, families and the health care system. Hence models of care across the critical illness trajectory that will include follow up pathways including physical (particularly speech therapy as evidenced in this study), cognitive and mental support, sleep clinics and rehabilitation centres need to be established. Additionally community programs such as support groups for critical illness survivors which may help them to actualise their new identity are needed. Finally, the participants’ heightened sense of finitude beckons us to shield patients from witnessing other patients dying and to ensure that fears about dying are addressed with patients before or shortly after discharge from ICU.
To date, there are few examples of post ICU services that provide ongoing care and assessment of the need for referral to services such as counseling, sleep clinics or physiotherapy. This has been recommended elsewhere [20,30]. Strategies include telephone follow up and/or post ICU clinic [
The findings in this study about communication difficulties are not new [2,7,24]. More needs to be done to find more effective ways of communicating with critically ill mechanically ventilated patients. It is important to establish effective communication for the ICU patients as that is their way of relating with others and beingin-the world. Although the importance of and the need for more models of communication have been extensively recommended elsewhere [
The problem of sleep deprivation remains a concern. Bearing in mind that this is a multifaceted problem [
More education and awareness of post critical illness and ICU-sequelae and their management for all involved in caring for this patient population is needed. Intensivists, nurses, general practitioners and other allied health including family and other care givers in the community often have very limited knowledge of the impact of critical illness. Such knowledge and awareness will empower all stakeholders to transition critical illness and ICU survivors from acute settings to the community and improving the quality of life for survivors.
More research to do with the experience of critically ill patients in the context of DSI and other ICU practices including technological advancement is needed so that the future of ICU care can be guided by both the gnostic and the pathic hand that aim at not only healing the physiology and anatomy but at reuniting the patient both to their world and themselves. However, the ambiguity of technology needs to be born in mind so that demonising of technology and prioritizing of attention is not negated in critical times but is executed with thoughtfulness and tact.
Researchers need to turn their attention to strategies that examine methods and processes that can reduce the impact, particularly the longer term impact of the experience. Most importantly research and funding is needed to increase awareness of critical illness and ICU survivorship sequelae and facilitate a better survivorship experience of critical illness beyond ICU [
The main aim of this study was to explore and understand the experience critical illness and ICU hospitalisation in the context of DSI. Although this was a single centre study in the Australian context, it serves to stimulate further interest, discussion and desire to improve patient outcomes in ICU through practice and research at local, national and international levels. Because this is a phenomenological study, it is hoped that it has challenged clinicians to treat patients as individuals with unique and ongoing needs resulting from their critical illness and ICU hospitalization.