Adult Patients’ Experience of Coercion in Intensive Care: A Scoping Review


 Background The use of coercion, which can be understood in a clinical context as imposing a measure against a patient’s opposition or declared will, can occur in various forms in intensive care units (ICU). One prime example of a coercive measure in the ICU is the use of restraints, which are applied for patients` own safety and for the protection of caregivers. A scoping review was conducted to explore the empirical data available on the experiences of ICU patients with coercive measures.Main text For this scoping review, clinical databases (PubMED, EMBASE, PsychINFO, Web of Science Core Collection, CINAHL, Scopus and Cochrane Library) were searched for qualitative studies. Using the CASP criteria for qualitative studies, the review focused on empirical research that captured how ICU patients themselves experienced restraints or other forms of coercion and excluded research related to staff experiences. A total of nine studies could be retrieved that fulfilled the inclusion criteria.The review describes common themes emerging from the scarce studies on patient experiences, including communication issues, delirium, memory, and emotional reactions. In spite of their serious clinical condition and fluctuating states of consciousness, a part of the patients did have memories of their ICU stay. Statements from patients revealed feelings of compromised autonomy and dignity that came with a loss of control. Physical restraints were only one concrete manifestation of coercion as perceived by patients in the ICU setting. Conclusion To date, there are few qualitative studies focusing on patient experiences of coercive measures in the ICU. In addition to the experience of restricted physical movement, the perception of loss of control, loss of dignity and loss of autonomy suggests that restraining measures are just one element in a setting that may be perceived as coercive. Health professionals may underestimate how deeply patients are affected by the perception of coercion. Good communication that clearly explains unavoidable measures to patients can reduce the negative impacts of coercive measures. More research on patient experiences is needed in order to reach a more comprehensive understanding of how patients perceive their ICU stay and to identify opportunities for further improvement of intensive care.


Introduction
Understanding the experiences of patients in the intensive care unit (ICU) is important in order to tailor interventions that minimize hardship and suffering. When a patient is faced with potentially fatal health conditions that require life sustaining therapies such as invasive machines and powerful medication, they often are inevitably exposed to physical pain, psychological distress, and delirium [1,2]. Patients nd themselves in a situation of psychological and physical dependence on their caregivers, which can threaten their identity and dignity. Constraining the patient using an active or passive approach has been shown to increase the patient's sense of dependency and suffering [2]. When the ICU clinical teams support patients in understanding and adjusting to the situation, a sense of dignity and humanity can be restored [3,4].
Coercion can be de ned as "a mode of in uence that operates by threats and force; aims at controlling the recipient's being, movement, or will; and leaves, at least initially, its recipient disadvantaged." [5]. In cases of coercion, a patient's liberty is restricted even if the patient is unable to actively recognize that he or she has been put under restraint [6]. "The transition to coercion occurs where support for the patient's self-determined formation of will ceases and the will of those treating the patient gains the upper hand without su cient participation by the person concerned" [6].
Using this broad de nition of coercion in a medical context, various situations in the ICU can be perceived by patients as coercion. In the ICU, restraints can take many forms; restraints are de ned as, "something that limits an individual's freedom of movement" [7] and can include mechanical/physical [8], pharmacological, or psychological measures to actively or passively restrain the patient [7,9].The need for continuous monitoring of a patient can also be perceived as a kind of environmental restraint [7,10].
Examples of psychological restraints include threats, misinformation, manipulation, withholding privileges, and other in uences [9,11]. The various forms of restraint are often used in combination with one another [12].
The scienti c literature mainly discusses the health professionals' point of view, especially on physical restraints. One common justi cation for the use of both mechanical and pharmacological restraints is to protect the patient, for example from injuries caused by unintentional removal of an endotracheal tube, cannula, catheter or other devices [13,14]. However, studies suggest that the incidences of unintentionally removed devices is even higher in restrained patients [15,16]. Some studies report the use of physical restraint being involved in severe injuries and even death [14,17]. In addition, physical restraint may increase the need for sedation, magnifying the risk of possible consequences that are associated with deeper sedation. There is an ongoing debate regarding the association of restraints with post-traumatic stress disorder (PTSD) [18].
The ambiguity around when and how to appropriately apply restraints is evident in the variation of their use and regulation in different countries. One study comparing the frequency of use of physical restraints in different countries showed a range of 7% to 87% of patients reporting the use of physical restraints of any form during their ICU stay [19]. The PRICE study, conducted in 34 European ICUs in 9 countries, found that an average of 33% of all patients were restrained in some way during their ICU stay [12]. Some differences between countries were signi cant; in the United Kingdom and in Portugal, no patients were restrained, whereas, in Italy, every ventilated patient was restrained [12].
Faced with these different approaches to coercive measures, and the ambiguity of their justi cation by different ICU teams there, is a need to broaden the scope of research on coercion and include the perspective of patients in order to hopefully support the creation of guidelines that center the patient's experience. The aim of this scoping review is to better understand how patients experience restraints and other potential forms of coercion in the ICU.

Methods
Using a research protocol (PRISMA checklist 2018 [20]), a search was run that included qualitative and mixed methods studies of patient experiences of restraints or other coercive measures in the ICU that were available up until August 2019. Reviews were assessed for qualitative statements. Studies in German and English were included.
Studies were excluded if they only relied on a quantitative approach because such studies do not allow patients to express their full range of experiences. As the aim was to gain insight into the patient's perspective, records dealing with the experiences of nurses, physicians and other clinical staff were excluded ( Table 2).
The main search was run using subject heading/MeSH terms and a keyword search. The search strategy was adjusted for the individual interface of seven databases (PubMED, EMBASE, PsychINFO, Web of Science Core Collection, CINAHL, Scopus and Cochrane Library). A google search of grey literature was conducted, but no relevant studies were identi ed.
Most records were identi ed through the Scopus database (n=193). Search terms are displayed in Table  1. Two examples of the search strategies are presented in Appendix 1. On the rst attempt, only four records were identi ed through PubMED. The terms were amended to include all patient experiences in the ICU and the search rerun. The search was conducted, including screening and abstract assessing, by two colleagues. Studies had to t the inclusion criteria and full text had to be available. After the screening process, 17 studies remained. The quality of the included studies was assessed using the Critical Appraisal Skills Program for qualitative research (CASP) [21]. The STEPwise approach was used for data extraction [22]. First, all relevant articles were searched for mentioning "coercion" or "restraints". Secondly, in the text analysis, categories and themes were identi ed through discussion with the second researcher [23].

Results
After removing duplicates, abstract screening, and full text analysis, 9 qualitative studies remained (Figure 2 + Appendix 2: Table 1). One study (Minnick) dealt with the topic "physical restraint in intensive care units". Eight studies covered communication, delirium, memories and psychological experiences in intensive care units. In these eight studies, spare statements about coercion experiences were mainly related to physical restraint. Two of the studies were secondary analyses of previous study results [24,25]. Themes and results on coercive measures/restraints regarding patient experiences can be found in Table 3.

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The ndings can be summarized into four main groups of patient experiences: (Table 4) 1. Most patients have no recollection, incomplete recollection, or faulty recollection regarding the experience of having been restrained in the ICU.
2. The statements that do exist on measures of restraints range from memories based on reality to delusional recollections.
3. Perceptions of coercion can be accompanied by a sense of loss of dignity, dependence, and discomfort.  30,31]. Receiving life sustaining therapies in the ICU and including restrictions of movement often result in the feeling of being "locked up," [27]. In a study by Chahraoui et al., patients also had some recall of physical restraint, "painful memories of being tied down", after memories were triggered by an external source [32]. Furthermore, restrictions by equipment often contributed to the perception of being restrained. Darbyshire et al. (2016) describe a wide range of perceptions and delusions that include abduction, imprisonment and "feelings of restraint" generated by "restriction of movement by the equipment" and "blurred reality" [25]. In the collection of patient experiences of acute mechanical ventilation reported by Roberts et al., the majority of patients had memory of mechanical ventilation. They associated restraining measures and mechanical ventilation with fear and helplessness [29]. When patients were able to recall their ICU stay and experience with restraints, they expressed a range of negative feelings, which could be related to some forms of restraint.
3. Perceptions of coercion can be accompanied by a sense of loss of dignity, dependence, and discomfort Table 4 shows that negative experiences in the ICU were not only related to the use of physical restraints; other aspects commonly linked to negative perceptions included lack of control, helplessness, noise, anxiety, pain, ventilation, dependency, insomnia and delirium with or without accompanying hallucinations. Endotracheal tubes, which interfere with active communication during ventilation, were especially linked to the perception of helplessness and dependency [24][25][26][27][28][29][30]32]. Many patients attributed a sense of loss of dignity to dependency and lack of control [25][26][27]29]. Moreover, feelings like powerlessness, uncertainty, and 'feeling lost' were commonly described in combination with anxiety [27].
Dziadzko et al. reported that restraining measures worsened the emotional state of the patient. Indeed, in their study, "The inability to communicate (34%), environmental factors (noise, alarms, laughter) (30%), procedures and restraints (24%), and intubation (12%)" were listed as the primary factors leading to negative emotions and worsened the psychological stress that is already present in the ICU [30]. These di cult experiences suggest that patients in the ICU are especially vulnerable to feeling or being coerced in the midst of an experience de ned by a sense of loss of autonomy, identity and dignity. These  [24]. For some patients, the presence of family members ameliorated some of the challenging factors of their ICU stay [28, 30,32]. All studies stated that information and good communication could reduce stress or fear and be bene cial for patients in the ICU, whether the source of information came from family or providers (Table 4). Patients and relatives both described positive memories of emotional and moral support from the care team that improved the overall experience [30]. Good communication and understanding the reasons for the restraints alongside family and staff emotional support seemed to play a critical role in the patient's acceptance and ability to process the restraints.

Discussion
There is a paucity of qualitative studies concerning restraints in the ICU. A major challenge with studying the issue of coercion or restraints from the patient's perspective is that patients often do not clearly recall their ICU stay. Most patients had limited or incomplete recollections of their time in the ICU. That said, when re ecting on the overall experience of being in the ICU, physical restraints were perceived as a part of a threatening situation and as going against the patient's free will.
Autonomy and dignity are universally recognized as ethical principles to respect, even though their speci cations may vary in national laws [33,34]. Coercion can arise by way of measures that restrict freedom (restraints). There is widespread consensus that restraint should only be applied in exceptional circumstances and if communicated clearly [16, 35,36]. Even though restraints are used to protect the patient from self-induced harm, there is limited evidence that physical and/or pharmacological restraints are related to better outcomes [14,37]. The intensive care community is aware of the psychological and ethical risks of restraining measures [16]. To avoid restraint in the ICU, guidelines are suggested and training efforts have been established [38,39]. It is valuable to have the patient's perspective on restraining measures when developing such guidelines and messaging [40].
Individual freedom may be limited by situations in which one cannot express oneself, cannot pursue one's individual goals, or cannot access opportunities to act [41]. There is also a perception in the literature of patients' experiences regarding lack or bad communication, lack of information, lack of control, helplessness, anxiety, pain, ventilation, dependency, insomnia and delirium that carry a risk of overriding the autonomy and dignity of the individual [42,43].
Some authors argue that non-pharmacological strategies should be considered before using restraints [38]. Other studies have suggested that allowing the patient to remain awake; mobilizing them; administering su cient therapy for pain, delirium, and anxiety; and including the family as much as possible in the process are all useful [38,39]. Here, the challenge seems to be how best to keep patients awake and mobile during their stay in the ICU to improve quality of life [44]. Moreover, there remains an asymmetrical power dynamic between the clinical team and the patient.
When adequate and focused communication is provided, some patients are able to accept restraining measures for their own good. This is a challenge, though, as patients in the ICU are often incompetent or agitated. Communication in such situations is di cult. Patients do report feeling understood and supported when talk to [28,31]. Patients want to be informed and updated and also want to discuss problems to be a partner in decision-making [45]. Allowing family members to be with the patient in the ICU helps to empower patients and has been shown to positively in uence outcomes and decrease length of stay [46,47]. To preserve a sense of reality and to provide the best possible support, patient diaries, a later visit to the ICU, or psychological support post-discharge may be useful [48,49].
In this scoping review, the identi ed experiences of coercion in the ICU were not only related to the use of restraints. The perception of helplessness, dependency, powerlessness and the loss of dignity may additionally be considered as a risk of disadvantage and coercion.
Guidance and education on how to recognize the patient as a person and communicate with him/her as a partner may reduce the perception of coercion and related negative emotions. Following a care ethics approach, a patient's perspective and participation should be included in the therapeutic journey [40].

Limitations
A major limitation of the present study is the lack of recollection of ICU experiences by patients, as well as the delusional memories that might have impeded their perceptions. This has been widely reported by previous studies and can be di cult to avoid as it is related to the actual clinical situations of ICU patients. Another limitation concerns language. The study only included studies available in English and in German, and may, therefore, have missed important contributions published in other languages.

Conclusions
The present scoping review revealed a signi cant lack of literature concerning coercion and restraints in the ICU from a patient perspective. Based on the ndings, restraining measures cause a range of negative emotions, which reinforces the idea that they should only be used in exceptional circumstances. Furthermore, the perception of helplessness, dependency, powerlessness and loss of dignity may be considered psychological forms of coercion. It may be relevant to broaden the term coercion and coercive measures to encompass forms beyond just physical or chemical xation to include these psychological All data generated or analized during this study are included in this published article (and its supplementary information les).

Con ict of interest:
The authors declare no con ict of interest. Funding: Swiss Academy of Medical Science: -Käthe-Zingg-Schwichtenberg-Fond