RESEARCH doi: 10.1111/nicc.12200

Intensive care unit patients’ experience of being conscious during endotracheal intubation and mechanical ventilation Anna Holm and Pia Dreyer ABSTRACT Background: There is a change in paradigm in intensive care units with trends towards lighter sedation. Light or no sedation protocols are, however, a radical change for clinical practice and can cause challenges for the patients. Undergoing mechanical ventilation when conscious can be a distressing experience for the patients. Receiving a tracheostomy increases patient comfort, but some patients still undergo prolonged endotracheal intubation during mechanical ventilation. The experience of being conscious during endotracheal intubation and mechanical ventilation in the intensive care unit has not previously been described. Aims: The aim of the study was to explore adult intensive care unit patients’ experience of being conscious during endotracheal intubation and mechanical ventilation. Design: Data collection was performed through semi-structured interviews and four patients were enrolled. Data were collected at two multidisciplinary intensive care units in Denmark. Method: Data were analysed using Ricoeur’s theory of interpretation, using the method described by Dreyer and Pedersen. The scientific tradition was phenomenological-hermeneutic. Result: During the analysis, three themes emerged: (1) The tube in the throat. (2) To be conscious but feeling doped. (3) When passing of time is dragging on. Conclusion: The findings shed a light over the experience of being conscious during endotracheal intubation and mechanical ventilation in the intensive care unit. A no-sedation protocol may cause problems for the patients both of a physical and an existential character, but despite this, patients seem positive towards being conscious. Relevance to clinical practice: The study suggests that clinical nursing practice may have to be further developed to accommodate the patients’ needs, e.g. communicating and participating as well as optimizing nursing interventions towards thirst, pain and tube management. Furthermore, the intensive care unit setting may need revision, providing space for the patient and sensory meaningful inputs in the technologically intense environment. Key words: Intensive care nursing • Mechanical ventilation • Qualitative research • Sedation

BACKGROUND

Authors: A Holm, RN, MScN, Research Assistant, Department of Anaesthesiology and Intensive Care, Aarhus University Hospital, Aarhus, Denmark; P Dreyer, RN, MScN, PhD, Clinical Nurse Specialist, Assistant Professor, Department of Anaesthesiology and Intensive Care, Aarhus University Hospital, Aarhus, Denmark and Institute of Public Health, Section of Nursing, University of Aarhus, Aarhus, Denmark Address for correspondence: A Holm, Department of Anaesthesiology and Intensive Care, Aarhus University Hospital, Nørrebrogade 44, Building 21, 1. Floor, 8000 Aarhus, Denmark E-mail: [email protected]

© 2015 British Association of Critical Care Nurses

There has been a paradigm shift in the intensive care unit (ICU) with a trend towards lighter sedation of patients (Wunsch and Kress, 2009; Salgado et al., 2011; Kress and Hall, 2012; Strøm, 2012; Hughes et al., 2013; Shehabi et al., 2013). Especially, the Nordic countries have implemented protocols aiming at using the lowest possible dose of sedatives (Egerod et al., 2013); however, internationally, there is an ongoing discussion if a no-sedation protocol is recommendable (Brochard, 2010; Kress, 2012). Historically, patients were conscious and manually ventilated during the polio epidemic in Denmark in 1

Being conscious during endotracheal intubation in the ICU

(a) Intubation

Endotracheal intubation any number of days

Extubation

(b) Intubation

Endotracheal intubation any number of days

Tracheostomy any number of days, weaning

Extubation

Figure 1 Typical course of intubation for patients undergoing mechanical ventilation.

the 1950s (Lassen, 1953), but when the mechanical ventilator (MV) was invented, patients were given sedatives to ease discomfort (Strøm et al., 2012; Tønnesen, 2012). It was not until the year 2000 that sedation procedures were changed, when a study by Kress et al. (2000) showed that daily sedation breaks reduced the number of days with MV as well as the length of hospital stay. After 10 years, in 2010, it was shown that a no-sedation protocol was also associated with reduced number of days with MV and length of hospital stay in both ICU and hospital (Strøm et al., 2010), and another step was taken towards light or no-sedation of patients. Light or no-sedation protocols are a radical change for clinical practice and a challenge to both health care personnel (Everingham et al., 2014) and patients (Karlsson et al., 2012a). Being conscious and undergoing MV is an extensive experience associated with breathlessness, panic, fear, helplessness, despair, voicelessness, being out of control, irritation, pain, anger and strange bodily sensations (Karlsson et al., 2012a). Studies show that a tracheostomy increases patient comfort (Blot et al., 2008; Durbin and Charles, 2010; Trouillet et al., 2011) and that an endotracheal tube may cause discomfort, inability to speak and pain, which are rated as moderately to extremely bothersome by patients undergoing light sedation (Samuelson, 2011). Early tracheostomy thus seems ideal in a clinical ICU practice with conscious MV patients; however, this procedure involves risk of complications (Sollid et al., 2008) and some patients still undergo prolonged endotracheal intubation. Traditionally, deep sedation has especially been associated with endotracheal intubation, but when patients received a tracheostomy and began weaning from MV, sedation dose was reduced to initiate spontaneous breathing and patients became more awake at this phase (Conti et al., 2014). In clinical practice, there are typically two categories of invasively ventilated patients: (1) Patients who only have an endotracheal tube and (2) Patients initially having an endotracheal tube, which is replaced by a tracheostomy after any number of days (Figure 1). The new paradigm in the 2

ICU means that patients with an endotracheal tube are also conscious, and a systematic literature review showed that the patients’ experience of no-sedation during MV and endotracheal intubation has not been illuminated. Several studies (Blot et al., 2008; Durbin and Charles, 2010; Trouillet et al., 2011) have demonstrated that a tracheostomy causes less discomfort to patients compared with an endotracheal tube. From a research perspective, it is necessary to separate the two experiences to accommodate the patients’ needs and through nursing interventions ease the discomfort and distress, which may occur during MV and endotracheal intubation (Samuelson, 2011; Karlsson et al., 2012a). The study brings new knowledge into clinical practice, which has not yet been described.

AIM The aim of this study was to explore the adult ICU patients’ experience of being conscious during endotracheal intubation and MV.

METHODS AND METHODOLOGY The study takes its starting point in the phenomenological-hermeneutic tradition, which is ideal when exploring patient experiences. Data were collected through semi-structured interviews (Kvale and Brinkmann, 2009) and analysed through a method inspired by the French philosopher Paul Ricoeur (Dreyer and Pedersen, 2009). Ricoeur argues that phenomenology and hermeneutics are codependent and by combining the phenomenological comprehension with the hermeneutic explanation, a deeper understanding of the lived experience can be achieved (Ricœur, 1976; Ricoeur and Thompson, 1981).

ETHICAL CONSIDERATION According to Danish law, studies using data collected from interviews do not require ethical approval (The National Committee on Health Research Ethics, 2013). © 2015 British Association of Critical Care Nurses

Being conscious during endotracheal intubation in the ICU

Interviews were conducted 1–2 days after extubation, placing the interviews close in time to the event being explored. All interviews started with an explanation of the purpose of the study, and the researcher ensured that the patients were competent and still willing to give consent to participate. Two patients were interviewed at the ward, two in the ICU. The interviews were tape-recorded and transcribed verbatim. Interviews lasted 15–45 min. The semi-structured interview guide was designed with in-depth, open-ended questions based on the systematic literature search, and the opening question was ‘Can you describe to me, how you experienced being mechanically ventilated?’. The interview guide included follow-up questions. Pauses were accepted as a possibility for the patients to reflect and catch breath, and the researcher tried to let the patient set the pace and not rush through the interviews.

were intubated with an endotracheal tube and had undergone MV in the ICU. To ensure that patients were conscious, they had to be scored between −1 and +1 on the Richmond Agitation and Sedation Score. The Confusion Assessment Method for the ICU (CAM-ICU) was used to ensure that patients were not delirious. Finally, patients had to be able to speak and understand Danish. Patients were excluded if they had head trauma, dementia, mental illness or otherwise were unable to narrate about their experience. In addition, patients with a tracheostomy were excluded. The very strict inclusion criteria resulted in a small number of participants, but this also meant that the patient narrations were centred around the aim of the study. It can be very difficult to interview this group of patients, as the ICU experience is overwhelming and affected by the patients’ critical situation. Due to the many unknown and intense experiences, it can be hard to separate events when narrating about them. This is why we excluded CAM-ICU-positive patients, as it was presumed that this, often very traumatic experience, would be the main focus for the patients and not because the delirium experience was belittled. Many patients receive a tracheostomy after a number of days with an endotracheal tube, and as it was assumed that the patients could have difficulties separating the two experiences, only those undergoing endotracheal intubation were included. We believe that the strict inclusion criteria have ensured focus on narrations representing ‘the experience of being conscious during endotracheal intubation and MV’, and in this way capturing a unique and not previously described experience. Patients were included consecutively irrespectively of sex, age or diagnosis. Eight met the inclusion criteria, but only four were enrolled, because one died, two declined to participate and one had no recollection of being in the ICU and could not be interviewed. Patients’ demographic data are presented in Table 1.

Participants

Settings

The following inclusion criteria had to be met to participate: Adult (aged >17 years) patients who

The research was conducted at two multidisciplinary ICUs in a university hospital in Denmark with a total

A letter with patient information about the study as well as a written consent for the patients to sign was made. Confidentiality of the participants was ensured, and the patients were explained that they could withdraw their consent at any time without any consequences. During the transcription of the tape-recorded data, patients’ identities were concealed by naming them A, B, C and D. Furthermore, approval for the study was given by chief physicians and leading nurses at the two participating ICUs. In cooperation with the researcher, the nurses who included the patients in the study considered the vulnerability of the participants and assessed if it was ethically acceptable to enrol them in the study, as described in the Helsinki Declaration (The World Medical Association, 1964).

DATA COLLECTION Data were collected during February to April 2013.

Interviews

Table 1 Demographic data

Patient Age Sex Diagnosis A B C D

78 86 61 77

F F F F

CAM-ICU score∗

Pleural effusion Negative Multi-trauma Negative Pneumonia Negative Pleural effusion Negative, one positive

Richmond Agitation and Sedation Scale (RASS)-score∗

Opioids for tube discomfort∗

0 0 0 −1/0

None Remifentanil infusion. Bolus Oxynorm and Rapifen Remifentanil infusion Remifentanil infusion

Days in ICU Days with MV 5 6 9 13

4 2 8 4

CAM-ICU, Confusion Assessment Method for the intensive care unit; F, female; ICU, intensive care unit; MV, mechanical ventilator. ∗ Twenty-four hours after intubation until discharge from the ICU.

© 2015 British Association of Critical Care Nurses

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of 18 beds for adult medical and surgical patients. The nurse-patient ratio was 1:1. The Danish Society of Intensive Therapy has published a recommendation on sedation strategy, where the goal is that patients in the ICU should be conscious, comfortable and communicative, while receiving as low a dosage of sedatives as possible, and this should be attained through an action towards agitation, pain, anxiety and discomfort (Dansk Selskab for Intensiv Terapi, 2011). The two participating ICUs follow this recommendation, and the included patients received no sedatives 24 h after intubation until discharge of the ICU. Only opioids were given to ease any discomfort from the endotracheal tube (Table 1). In Denmark, the use of physical restraints is not in general practice, and none of the patients included were physically restrained during the ICU admission.

DATA ANALYSIS The data analysis was inspired by Ricoeur’s theory of interpretation, which entails a dialectic movement between the parts and the whole in the hermeneutic circle as well as a movement between explanation and comprehension to reveal the disclosed world in front of the text (Ricœur, 1976; Dreyer and Pedersen, 2009). During his extensive authorship, Ricoeur himself has not presented a method of text analysis. Thus, the researcher must be guided by others who have interpreted Ricoeur. This study was in accordance with the approach of Dreyer and Pedersen (2009). The process of reaching an in-depth understanding of the lived experience involved three steps: (1) Naïve reading, where the reader acquires a general sense of the text as a whole. (2) Structural analysis, which is the movement from what the text says to what the text speaks about and finally development of themes. (3) Critical analysis and discussion, where new perspectives from the literature are included to reach a deeper understanding of the interpretation. The research software Nvivo 10 was applied. This tool facilitated the opportunity to move between the parts and the whole during the coding of text passages of the transcribed interviews and therefore had good correlation with Ricoeur’s theory of interpretation.

FINDINGS During the structural analysis, three themes emerged.

STRUCTURAL ANALYSIS The tube in the throat The patients’ descriptions of the endotracheal intubation relate to the experience of having a foreign

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object in the throat and mouth, which caused the feeling of having a lump in the throat that did not belong there: ‘Well you can feel that there is a lump down there … It is as if it is too big. But I knew what it was … ’. Any discomfort was typically due to the tube being unstable or insufficient pain management. When the tube was not stabilized, it could cause worries whether it would stay in place, i.e. when coughing: ‘Then I held on to it. It’d better stay in there’. Descriptions of pain varied from none to a constant and overwhelming experience: ‘But it’s not comfortable. It’s agonising all the way through’. Experiences of the tube causing the skin in the roof of the mouth to be galled, the feeling of being strangulated and having to vomit if the tube got displaced were also characteristic: ‘If it shifted place, it touched something, and then you get these [the patient takes her hands up to the throat and makes vomiting sounds]’. The tube was experienced as a foreign object invading the patient’s body and even though it was necessary for survival, the patients wished to get it out as quickly as possible. The patients, however, suppressed the urge to pull it out, and there were strategies for enduring the discomfort and agony: ‘Well of course it [the tube] is unpleasant to have, its no joyride, you know. But when one day had passed, I thought – well then it can stay there for a couple of days more. And when you have managed that, then you can do it … ’. Co-management in routines and care meant that the patients had an existential need for participation in their own life fulfilled, here exemplified by a situation with suctioning: ‘Then there was one who came up with the idea, that I should hold her hand or her arm, and then push it away … ’. Being able to push the nurse’s hand away when wanting her to stop the suctioning meant that the patient gained a feeling of control and comfort in an otherwise strange and unfamiliar situation. Apart from physical discomfort, the tube also meant that patients were denied the possibility to meet basic needs such as drinking water, and this caused an overwhelming and constant feeling of thirst: ‘Then I gesticulated to get a glass of ice water with drops of dew running from it, but I couldn’t get that’. Being refused access to such an elementary human need caused feelings of yearning and deprivation, as described by this patient: ‘I dreamt of getting a mouthful of water’. When these needs could not be satisfied, the patients were left in waiting position, having to tolerate and endure the situation. Being endotracheally intubated was a challenge when communicating, and patients were required to use alternative communication strategies, which was one of the worst experiences: ‘I wasn’t able to speak. That was the worst thing actually … But I accepted it. I could write, you know. And move my lips’. It was difficult for patients not being able to express themselves verbally, © 2015 British Association of Critical Care Nurses

Being conscious during endotracheal intubation in the ICU

but they found ways of communicating by writing on a pad, moving their lips or gesticulating with their hands. Even though it could cause frustration, patients felt that the nurses were attentive and patient. One patient was emotionally moved during the interview, talking about the nursing care: ‘Very good … And patient … I’m deeply impressed … It almost makes me cry’. A clear and professional communication is of great importance for the patients: ‘And I can remember he said, that it was very important that I didn’t touch it [the tube]. And I could sense on the way he said it, that it was important.’ This is an example of how communication by the health care personnel was essential for the patients’ understanding and acceptance of the critical and difficult life situation.

To be conscious but feeling doped All the patients described episodes during the MV that they did not remember. For some, it was only the intubation procedure, but others had no recollection of a major part of the ICU stay, although they had not been sedated after intubation: ‘I can’t remember … So I have probably been gone in some way’. These gaps in the memory are described as having a blurred memory, where the recollection both is and is not there: ‘And that is probably because you are so doped … I mean, even though you are conscious, you are still doped’. At the same time, patients had descriptions of a consciousness characterized by unreal experiences and confused thoughts. These experiences could manifest themselves in the form of incoherent thoughts where patients could feel that they were going insane: ‘And then you felt like it was gibberish, what you were saying … And you thought – am I going crazy? But they told me that I wasn’t’. For other patients, the imaginary experiences took the form of intense hallucinations: ‘Dead people and all sorts of things, of somebody who danced around … It was very scary’. But it was not only frightening things patients could recollect; one patient had a beautiful dream that gave her a wonderful reminiscence and a place to escape to in her thoughts. These delusions, hallucinations and dreams created a surreal consciousness for the patients, which could feel both absurd and macabre, but also gave them a world to escape into when real life became too overwhelming. The patients reflected about being conscious during the endotracheal intubation and MV. Although pointing out that they had no frame of reference, they expressed that they would prefer being conscious instead of sedated: ‘I don’t like the idea of sleeping from it all. I don’t want that’. Not knowing what had happened was scarier to patients than being conscious. It seemed that being conscious fulfilled an existential need for control: ‘Rather that than to be sleeping. I think © 2015 British Association of Critical Care Nurses

that would scare me more … Then I don’t know what’s happening. I would like to be able to participate. It’s my life’. Even though the experience of being conscious may have been traumatic or painful, consciousness gave a feeling of actively participating in one’s own life.

When passing of time is dragging on A central theme emerging was the perception of time. Many felt that time was dragging on and that they were bored during the stay at the ICU as described by this patient: ‘Time seemed long’. This perception of slow time was manifested in the experience of being bored, some found distraction in the television, but other than that, the possibility for diversion was sparse, and familiar activities such as reading a book may not have been an option: ‘I have a book … But I haven’t had the strength to hold it’. Due to the MV, the patients found themselves confined to the bed space and unable to leave the room –a room that lacked meaningful sensory inputs. Another perspective on the time experience was the perception that most time was spent waiting, and especially waiting for the extubation was narrated by the patients. A patient described how she was constantly hoping for the personnel to come and remove the tube: ‘You wait and wait. Ten minutes is a long time, when you wait. You think a lot about whether they are coming soon. Perhaps in an hour they’ll be here … Or perhaps I’m so fortunate to get it out before I go to sleep. But it didn’t … And then they said – perhaps tomorrow … But tomorrow is a far away, when you just wait’. The patient found herself in a room with no possibility for co-determination or control over time, which caused frustration. Patients experienced that health care personnel had the power over time.

DISCUSSION The tube as a foreign object caused discomfort as described in the literature (Samuelson, 2011; Karlsson et al., 2012a); however, findings from this study indicate that knowledge of what the tube is demystifies having an object placed in the mouth and throat. Visually showing the patient an endotracheal tube while providing information about it and/or giving the patient a mirror may decrease anxiety and provide comfort and acceptance (Freysteinson, 2009). The findings also suggest that stabilizing the tube sufficiently may decrease physical discomfort, e.g. the experience of having to vomit. This is consistent with other findings (Gardner et al., 2005). When patients go through endotracheal intubation, pain management seems extremely important and a reliable observation tool and adequate pain management are crucial (Linde et al., 2013; Stites, 2013). In contrast to other patient groups (Sahlsten et al., 2008), patient participation is a relatively new concept 5

Being conscious during endotracheal intubation in the ICU

in the ICU because patients were previously sedated and unable to participate. With light or no sedation regimes, it seems relevant to try to increase involvement of patients in the ICU. This study shows how patient participation can fulfil an existential need and provide a sense of comfort. We found that co-management in nursing routines such as suctioning was important to the patients’ perception of control and it seems pertinent to include the patients when they are conscious. Providing the patients an opportunity to participate in the planning of daily activities may also increase their perception of controlling time. When basic needs are not met, patients experience a yearning, e.g. for a glass of water to drink, and this concept of yearning has previously been described in the ICU setting (Karlsson and Forsberg, 2008). Thirst is a known phenomenon in the ICU (Landstrom et al., 2009; Arai et al., 2013), but this study also suggests that thirst is more than a physical need; it is also an existential need – a need that could not be fulfilled because of the tube. The experience of being non-vocal was described as one of the worst consequences of the endotracheal intubation and other studies have shown that it can cause feelings such as frustration, despair and helplessness (Khalaila et al., 2011; Karlsson et al., 2012b). Writing on a pad, gesticulating, using facial expressions, shaking/nodding the head, squeezing hands, lip reading and communication boards are common communication strategies of intubated patients (Grossbach et al., 2011; Happ et al., 2011; Radtke et al., 2011; Schurer, 2014), and some of these strategies were also used by the patients in this study. Nurses were described as attentive and patient; however, being non-vocal was still a frustrating experience, and further investigations into adequate communication strategies are needed. A finding consistent with Karlsson et al. (2012a) was descriptions suggesting that patients wished to be conscious during MV. In the study by Karlsson et al. (2012a), 8 of 12 patients expressed that they preferred being conscious rather than sedated. This is surprising, as another study found that light sedation in comparison with heavy sedation may increase the perception of the ICU stay as unpleasant (Samuelson et al., 2007). Reflections from this study showing that consciousness gives a sense of being in control and enables the patients to participate in their life and fulfil an existential human need may, however, explain this finding. Patient preferences concerning sedation practices have not been thoroughly studied, and more evidence is needed to discover if patients prefer to be conscious or sedated during MV. It may be argued that it is dependent on the individual patient’s background, coping 6

strategies and course of treatment. A novel approach to sedation, known from analgesic treatments, called patient-controlled sedation has been suggested (Chlan et al., 2010). This approach, although posing some challenges, enables the patient to participate and maybe gain some control over the situation. ICU patients’ perception of time has been described briefly in only few studies (Karlsson et al., 2012a; Olausson et al., 2013). In accordance with the findings in these studies, patients perceive that time passes slowly. Olausson et al. (2013) described how interior design and personal belongings could be a source of power, helping patients to endure. In the current study, the ICU setting seems to lack sensory inputs to help fill out time with meaningful experiences. Being confined to the MV, as well as the limited resources, reduces the possibilities to participate in activities, and patients’ experience of time, as well as how to fill out time, needs to be studied further.

Methodological considerations This study contributes with new knowledge about being conscious during MV and illuminates a perspective not previously investigated. The qualitative approach has been excellent to gain understanding of the patients’ experience and both data collection and method of analysis were sufficient. The strict inclusion criteria have provided only few participants, but have ensured that the patients actually did narrate about the field investigated, and not mixed with, e.g. the experience of having a tracheostomy. To provide a deeper understanding of the lived experience during endotracheal intubation and MV, follow-up interviews at 3 and 6 months could provide new perspectives as new memories may have emerged.

CONCLUSIONS AND IMPLICATIONS FOR PRACTICE The findings shed a light on patients’ experiences of being conscious during endotracheal intubation and MV in the ICU. Overall, descriptions of the physical experience of having an endotracheal tube, consciousness and the perception of time were characteristic in the patient narrations. Findings show that a no-sedation protocol may cause problems for the patients both physically and existentially, but despite this, patients seemed positive towards being conscious. The study suggests that clinical nursing practice may have to be further developed to accommodate the patients’ needs, e.g. communication and participation as well as optimizing nursing interventions towards thirst, pain and tube management. Furthermore, the ICU setting may need revision, providing space for © 2015 British Association of Critical Care Nurses

Being conscious during endotracheal intubation in the ICU

the patient and sensory meaningful inputs in the technologically intense environment. As light or no sedation protocols are relatively new, there is a need for further investigation of several elements of the conscious MV experience before implementing nursing interventions that make it tolerable for the patients to be conscious during MV.

ACKNOWLEDGEMENTS A. H. is the primary author and is responsible for drafting the manuscript. A. H. has contributed to the majority of data collection, data analysis and writing of the manuscript. P. D. was supervisor during the study and made critical revision of the manuscript.

WHAT IS KNOWN ABOUT THIS TOPIC • • •

There has been a paradigm shift in intensive care unit (ICU) sedation towards light or no sedation protocols, causing challenges for both ICU personnel and patients. Being conscious during mechanical ventilation can be experienced as unpleasant or distressing for the patients. Early tracheostomy increases patient comfort, but some patients still undergo prolonged endotracheal intubation while conscious.

WHAT THIS PAPER ADDS • • •

Being conscious during endotracheal intubation and mechanical ventilation can entail physical experiences such as pain, discomfort, thirst, difficulty in communication, altered consciousness and perception of time. Despite unpleasant experiences, patients were positive towards being conscious, but patient participation and improved communication strategies seem important. Some nursing interventions as well as the ICU setting may need revision to accommodate the experiences and needs of the conscious, mechanically ventilated patient.

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Intensive care unit patients' experience of being conscious during endotracheal intubation and mechanical ventilation.

There is a change in paradigm in intensive care units with trends towards lighter sedation. Light or no sedation protocols are, however, a radical cha...
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