Patient and family experiences of sedation in an urban academic tertiary-level intensive care unit in Canada: a qualitative study

Abstract

Background

Sedation is commonly used in critically ill patients to facilitate procedures and care as well as provide comfort but can carry risks such as delirium and prolonged mechanical ventilation. Although current guidelines advocate for light sedation, sedation practices are influenced by clinicians’ subjective interpretations. Patients and families may experience distress and unmet needs, and little is known about their perspectives and experiences in the context of contemporary light sedation practices.

Objective

This study aimed to understand the perceptions and experiences of both patient and family members in the intensive care unit (ICU) of current sedation practices.

Settings

Canadian, closed, mixed ICU setting.

Participants

Critically ill adult patients and adult family members.

Methods

Patients and family members were interviewed, using a semi-structured interview questionnaire, and Braun and Clarke inductive thematic analysis was used to identify themes and subthemes in the data.

Results

We conducted semi-structured interviews with 10 family members and 10 patients. Family members and patients reported that sedation was needed for patient comfort. Family members also described the need for sedation for patient and staff safety, as well as their own comfort. While both groups described sedation as necessary for enduring the medical procedures in the ICU, both groups reported concerns of sedation use, including negative physiological and cognitive patient outcomes. Patients and family members also recommended strategies for improving how sedation use is communicated in the ICU.

Conclusions

Perceptions and experiences of patient and families with sedation care practices in the ICU were multifaceted with both positive and negative outcomes reported including psychological and emotional concerns with sedation use. Key recommendations were provided for improving sedation practices with families emphasising the need for family-centred care and patients highlighting the need for self-determination.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• Interviews were co-developed with patient and family partners, and the analysis achieved richness and conceptual depth to meaningfully address the research aims.

• Family caregiving roles were not assessed, limiting insight into baseline patient conditions.

• Participants were predominantly of European ethnicity with post-secondary education, limiting representation of diverse populations.

• Single academic intensive care unit (ICU) setting may limit generalisability to other ICUs.

• No healthcare provider perspective on sedation experience, which could provide valuable insight into potential strategies to improve patient and family-centred care.

Introduction

In critically ill patients, sedation is used to promote patient comfort, reduce anxiety, facilitate invasive medical procedures and optimise patient care.¹ Sedation use can be associated with potential risks (eg, hypotension) and negative outcomes including increased risk of delirium and prolonged mechanical ventilation.^{2 3} Current guidelines advocate for a minimal or light sedation approach to facilitate patient care and reduce negative outcomes. To achieve this, healthcare providers use assessment tools (eg, Richmond Agitation-Sedation Scale). There remains significant variation in practice between healthcare providers, as the subjective interpretation of patient needs for sedation in addition to individual factors (eg, experience, professional role, personal beliefs, family presence) play a significant role in how sedation is administered in the intensive care unit (ICU).⁴,⁶ Though commonly used and necessary, sedation limits the patient’s ability to communicate effectively. Patients may experience discomfort and vivid memories that can be distressing,⁷,⁹ but may not be able to communicate their experience in the moment effectively because of physical barriers (eg, endotracheal tube, tracheostomy, non-invasive ventilation masks, restraints) or consequences of critical illness (eg, delirium, physical weakness). Further, family members report different perspectives on their needs being met in the ICU with various factors impacting their own health, well-being and capacity to cope with their experiences.¹⁰,¹³ There is limited data available from patients and families on their perceptions and experiences of sedation practices in the ICU, particularly in the current ICU environment where light sedation is more common. The aim of this qualitative study was to understand and describe patient and family member experiences of current sedation practices in the ICU.

Methods

Study design

This qualitative study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research checklist (online supplemental appendix 1).

Participants

Participants were eligible to participate if they were 18 years of age or older; able to verbally communicate (ie, not receiving ongoing mechanical ventilation); able to provide informed consent; English-speaking; and either a patient who had received sedation during an ICU admission at the Foothills Medical Centre, in Calgary, Alberta, or a family member of such a patient, within the last year. We used convenience sampling for recruitment where eligible participants were approached for potential participation. Eligible participants were recruited by one research assistant (AO). All participants provided written informed consent prior to participation.

Patient and public involvement

Patient partners serve a distinct role from study participants and in the study were involved in shaping the research question and interview guides to ensure content was relevant and accessible for study participants. In addition, patient partners were involved in the data analysis and manuscript drafting process. Patient and family partners were engaged using the Canadian Institutes of Health Research Strategy for Patient-Oriented Research framework.¹⁴ An interview guide was developed in collaboration with the members of the research team, ICU healthcare providers (including a physician, nurse practitioner (NP), respiratory therapist, registered nurse and a pharmacist) and two patient and family partners. The interview guide was subsequently piloted with a patient and family partner to ensure interview questions aligned with relevant experiences of patients and families (onlinesupplemental appendices 2 3).

Data collection

Semi-structured interviews were conducted individually by a research assistant (AO) between 13 August 2024 and 28 November 2024. The study was conducted in a closed, 34-bed mixed medical-surgical ICU within an academic urban tertiary care centre. The ICU care team consisted of an intensivist, an NP, and resident physicians. Participants were interviewed during daytime hours during their ICU admission. All patients received sedation at some point during their admission. The indications for ICU admission and specific sedative agents administered were not collected as part of the study. Most patients in this ICU were administered commonly used sedatives such as propofol, midazolam or dexmedetomidine. The participants interviewed did not have any previous relationships with any member of the research team. Interviews were audio recorded and transcribed by a third-party professional transcriptionist and the data were de-identified before analysis. Demographic data were collected from participants following their interviews at participant discretion.

Data analysis

De-identified transcripts of the interviews were imported into NVivo V.14 (QSR International, Melbourne, Australia) for data analysis. Two researchers (AP-W and TE) trained in inductive qualitative thematic analysis completed data analysis using the reflexive thematic analysis methodological approach described by Braun and Clarke within a constructionist methodological framework.^{15 16} Patient and family interviews were analysed as separate groups. Transcripts were analysed using the six-step approach described by Braun and Clarke:¹⁵ (1) read transcripts line-by-line to become familiar with the data; (2) develop initial codes from the data; (3) search for themes and combine codes into themes; (4) review and refine identified themes; (5) define and determine the significance of themes; (6) report the result findings. Data were continually reviewed and analysed, and through this iterative process themes and subthemes related to the data were generated. Patient and family data were analysed separately to capture their distinct and unique experiences with sedation and to avoid diminishing meaningful differences in the findings.

Qualitative rigour

Qualitative rigour was upheld through multiple strategies. Although member checking with participants was not possible despite multiple efforts to contact participants, credibility was supported by review and refinement of preliminary findings by our patient and family partners with lived ICU experience (SK and PO). Analytical depth was further enriched through ongoing interpretive dialogue between two researchers from different disciplines and backgrounds, allowing for critical reflection and deepened conceptual development of themes. To ensure dependability and confirmability of the results, the researchers maintained an audit trail and held iterative coding meetings throughout the data analysis for analytical discussion and interpretive collaboration. Reflexivity was upheld through ongoing reflexive journaling to examine potential assumptions held by the coders. Following 20 individual interviews conducted with 10 family members and 10 patients in the ICU, the analysis achieved richness and conceptual depth to meaningfully address the research aims.

Results

We conducted 20 semi-structured interviews with 10 family members and 10 patients. The average duration of the interviews was 15 min and 12 s. Length of stay ranged from 1 to 60 days. Recruitment focused on patient and family members from urban ICU settings. Participant demographics are provided in table 1.

Table 1. Study participant characteristics.

Participant characteristic	Family (n=10)	Patients (n=10)*
Age category, years, n (%)
20–29	0 (0)	1 (10)
30–39	1 (10)	0 (0)
40–49	3 (30)	2 (20)
50–59	2 (20)	4 (40)
>60	4 (40)	2 (20)
Information not obtained		1 (10)
Sex, n (%)*
Female	6 (60)	4 (44)
Education, n (%)
Bachelor’s or higher	5 (50)	4 (40)
High school diploma (no post-secondary)	1 (10)	3 (30)
Less than high school	1 (10)	0 (0)
Post secondary (currently enrolled)	0 (0)	1 (10)
Trades certificate	1 (10)	0 (0)
Military	1 (10)	0 (0)
Information not obtained	1 (10)	2 (20)
Ethnicity
Northern European	1 (10)	1 (10)
Western European	2 (20)	2 (20)
Southern European	1 (10)	0 (0)
Eastern European	0 (0)	1 (10)
North American origins	4 (40)	1 (10)
British Isle origins	1 (10)	0
Indigenous	0 (0)	1 (10)
Prefer not to answer	1 (10)	2 (20)
Information not obtained	0 (0)	2 (20)
Relationship
Spouse	6 (60)	Not applicable
Child	1 (10)	Not applicable
Parent	2 (20)	Not applicable
Relative	1 (10)	Not applicable

^*Calculated, based on n=9.

Table 2 illustrates the themes and subthemes identified from the patient and family interviews. Exemplary quotes from patient and family interviews are shown in online supplemental table 1 and online supplemental table 2, respectively.

Table 2. Themes and subthemes for patient and family sedation perceptions.

Patient themes (subthemes)	Family themes (subthemes)
Purpose of sedation	The witness of suffering
Effects of sedation (Cognitive effects, Physical effects, psychological effects)	Purpose of sedation (Psychological impacts of critical illness, Patient recovery and Patient and staff safety)
Patient desired self-determination (Information sharing, Active participation)	Psychological impacts of sedation (Fear, Helplessness)
	Desire for family centred care

Patient results

Three main themes were identified from patient participant interviews: Purpose of sedation, Effects of sedation and Patient desired self-determination. These themes reflect patients’ perceptions of the purpose for receiving sedation, their understanding of potential adverse effects of sedation, the ways in which information about sedation is communicated to them and their beliefs regarding their own role in decisions and experiences related to being sedated.

Purpose of sedation

Patients perceived sedation primarily as a helpful method for recovering from illness (Q 1). One patient expressed, ‘They sedated me as a tool for me to get better’. Another patient described it as ‘giving me personal time to recover’. In addition to aiding recovery, patients believed sedation was also used to promote sleep; ‘I will say, I didn’t sleep for a week, and they used sedation so that I could get a little bit of sleep so that I could recover’. Patients further reported that sedation played a vital role in pain control, reducing anxiety and decreasing awareness of medical procedures. As one patient explained, ‘you don’t experience any pain and you’re not conscious’. Another patient added, sedation ‘kind of puts you at ease. It’s no reason for you to get upset’.

Effects of sedation

Patients identified various effects of sedation, including three subthemes: Cognitive effects, Physical effects and Psychological effects.

Cognitive effects

One patient described the cognitive side effects of sedation of memory loss, ‘I don’t know what the sedation was like, because I don’t remember any of that’ while another stated, ‘I just basically try to piece together my short-term memory as best I can, and then if I have any gaps, I’ve learned to just become comfortable with not remembering the gaps’.

Physical effects

Patients recognised the potential physical side effects associated with sedation, which included the possibility of not waking up, organ damage, allergic reactions and in severe cases, death (Q 2–3). One patient expressed, ‘I might not wake up’. Another stated, ‘…I think I’ve heard that sometimes certain organs can be damaged by too much sedation’.

Two participants detailed the physical mobility challenges they experienced after sedation. One said, ‘I couldn’t get out of my bed’, while another recalled, ‘After sedation, I felt pretty groggy, pretty light-headed and unsteady on my feet’.

Psychological effects

Patients experienced psychological side effects such as fear and vulnerability while receiving sedation. Fear not only related to the possibility of ‘… getting addicted to the sedative’, but also from feeling loss of control. One participant stated, ‘I guess the biggest part is knowing what the outcome is going to be. When you’re sedated for an operation or whatever, you never know how that’s going to work out’. Another participant expressed fear with being vulnerable while under sedation ‘The negative things about sedation would be that a person could be taken advantage of for no good purpose’.

Psychological effects included a distorted perception of reality as a side effect of sedation. Participants highlighted the distressing experience with delirium and the struggle to distinguish between dreams and reality because of sedation with one participant stating: ‘…the first day I wasn’t there. So much drugs that I didn’t know I was even alive and I didn’t like what I saw. I was like, if I’m dead, this is not a cool place to be. I prefer being whatever else than whatever it is’. They added, ‘it didn’t make sense because during that whole day I was in and out of reality. So, I didn’t know if I was back to reality’.

Patient desired self-determination

Patients voiced wanting to have self-determination during their care (figure 1). Two subthemes were identified including: Information sharing and Active participation.

Figure 1. Family and patient identified recommendations for sedation-centred care in the ICU. ICU, intensive care unit.

Information sharing

Patients had varying experiences regarding how information on sedation was shared by healthcare providers and expressed a desire for more information around sedation (Q 4). One patient noted ‘well, obviously a customer should be informed. They should be able to make an informed decision’. The right to refuse was also emphasised, ‘remember, a patient always has the right to refuse. If I say, “I don’t like what you’re going to put in me,” I don’t want it’. In many urgent situations, sedation was administered without explicit input or approval from patients. One individual noted, ‘I didn’t really find out until I woke up’, while another explained that no conversation about sedation was had before administration because ‘it was urgent’.

In less urgent situations, some patients felt that sedation was explained prior to being given, stating ‘well, they just explained the process and why it was needed’, (Q 5). In either case, patients felt that the healthcare team was helpful in answering questions about sedation after they regained capacity. One patient shared, ‘after I woke up from sedation and made sure I’m doing okay…then [they] explained to me what happened’.

Information sharing, reassurance and follow-up from the medical team were identified as key factors to patients’ comfort when requiring sedation (Q 6). ‘I think that when people are conscious and they have to be given sedation, that it’s fully explained, and someone really comforts them’. Continuity of care was identified as being essential for the improvement of patient care around sedation management (Q 7).

Active participation

Patients reported a desire to be active participants in their care and have their voices acknowledged before, during and after receiving sedation. One participant emphasised, ‘Everybody needs to be heard and needs to be seen. And everywhere, where you are, how much money you have, what place you are, it doesn’t matter. You need to be heard. And that’s for everybody’. Participants articulated preferences regarding the sedation experience, including ‘a quieter environment’, ‘a dim environment’ or an intervention to ‘to take the edge off a bit before the sedation’. Post sedation, some participants expressed a desire to be physically and cognitively engaged in their recovery process, noting ‘getting up, moving around, trying to keep your mind active. Maybe do some brain exercises, maybe some physiotherapy’.

Family results

Four main themes were identified from the family participant interviews: The witness of suffering, Purpose of sedation, Psychological impacts of sedation, and Desire for family-centred care. These themes capture family members’ perspective on the use of sedation and its role in the care of their loved one, the psychological impact of witnessing a loved one sedated, and their desire for inclusion through information sharing, communication and opportunities to provide input regarding sedation and related expectations.

The witness of suffering

Family members reported sedation as a tool to facilitate comfort for both their loved one and themselves. Family perception for the use of sedation was directly tied to patient comfort, and ‘keeping [the patient] asleep and calm’. Not wanting to see a family member suffer was a consistent theme across all interviews (Q 8–9), which was directly linked to their own comfort as family members (Q 10–11). As one family member described, ‘Sedation would be calming a patient who’s frightened… so that pain control can happen… so that the family can [be] calm’.

Purpose of sedation

Family members identified several perceptions related to the purpose of sedation with three subthemes: Psychological impacts of critical illness, Patient recovery and Patient and staff safety.

Psychological impacts of critical illness

Family members highlighted the need for sedation to encourage sleep, mitigate the psychological impact of experiencing pain, anxiety and protect patients from trauma by minimising memories of procedures. As one family member expressed, ‘When a patient requires sedation, usually there’s a medical reason for it, such as to avoid trauma or anxiety or to do a procedure that would be very uncomfortable. So the benefits, of course, are to prevent all of those things from further affecting a patient’s experience, negative experience’. Another family member added, ‘Sedation is bringing someone to sleep and to have no awareness, no pain, and make them comfortable’.

Patient recovery

Family members highlighted the importance of sedation for patient recovery. As one family member described, ‘…(sedation) helps to keep them stable so they can heal faster’. Another family member commented, ‘Well, I can only speak for this last experience, but without it, he was very agitated, and the more agitated he became, the harder it was for him to breathe. As soon as he settled into a pattern that got the sedation, his breathing improved’.

Patient and staff safety

Family members reported sedation being paramount for patient and staff safety (Q 12) that was directly related to patient delirium, or hyperactivity (Q 13). ‘Patients sometimes get hyper…They can hurt themselves…I think for the safety and for the good for the patient (sedation) can be given’.

Psychological impacts of sedation

Family members emphasised the psychological impacts of sedation on their experiences expressed through two subthemes: Fear and Helplessness.

Fear

The psychological impacts of sedation use on patients in the ICU were primarily centred around the subtheme of fear. One main concern family members had was the inability of patients to express pain while sedated (Q 14). Other concerns dealt with the aftermath of sedation use once a patient regained capacity. Family members expressed multiple fears such as addiction to sedation, or concerns of their loved one’s brain and personality being altered or an allergic or adverse reaction to prolonged sedation use (Q 15–17).

Moreover, family members expressed an overarching fear that their loved one might not wake up at all (Q 18–19), ‘…if there’s any lasting impact that the sedation where, God forbid, they don’t wake up or if there’s any impairment’. There was also a fear of memory loss for the patient, ‘But I think that when he woke up he looked confus[ed], talking behind like two, three years before’. Another family member added, ‘He doesn’t recognize me, and that made me think that he had a brain injury’.

Helplessness

Family members reported feeling a sense of helplessness around helping their loved one when they were receiving sedation, not knowing if their loved one could hear them. Family members found the loss of communication with their loved one while under sedation to be disconcerting, describing it as a loss of control (Q 20), ‘Does [my loved one] know I’m here?’ Another family member added, ‘I felt helpless, and I was wondering all the time if she could hear me’.

Desire for family-centred care

Family members reported a strong desire for family-centred care that should include information sharing on sedation for increased awareness and understanding, clear and consistent communication about sedation, continuity of care (during shift changes and rounds) and social support (Q 21–27) (figure 1). One family member described this as, ‘…the information you get from the team, I think that’s very important, because understanding what is going on makes it easier to accept a few things’. Another family member stated, ‘Probably just helping families be more aware of the whole process and the risks and stuff’.

Family members expressed vulnerability in the ICU and the strong desire for better communication between families and ICU healthcare providers. ‘As a family member, you’re feeling very, very vulnerable, you’re feeling very useless. You’re scared to death, because that loved one is on the precipice of passing away. If they can ease your mind a little bit, I think it’s huge, even if there’s one person in the team that can take one minute and just explain a little bit as they’re going along… So I think that the communication is huge. You can’t do anything else to help your loved one, except know what they’re doing.’

Moreover, family members desired communication about sedation to include a description of sedation side effects such as confusion, agitation and memory loss (Q 23–25), in addition to, ‘The type of sedation that was being used and if there were alternatives’. One family member summarised this as, ‘Helping the person understand why the patient’s being sedated, and what potential risks there are, and what to expect so there’s no surprises, just to be better prepared that way’.

Discussion

This qualitative study examined patient and family member experiences of sedation practices in the ICU. The purpose of sedation was a consistent theme among both groups, with subthemes centred on the view that sedation helps facilitate care and is necessary for medical procedures. Further, family members viewed sedation as a means for providing comfort while patients viewed sedation as a tool for aiding in their recovery. Both patients and family members highlighted their desire for better communication and information sharing around the use and impacts of sedation. Patients reported on the importance of maintaining control over their care as much as possible while receiving sedation.

Previous qualitative studies have reported on the experiences of family members in the ICU highlighting that families have fear, stress and anxiety and find the ICU environment intimidating.¹³¹⁷,¹⁹ Our results align with previously reported results but further expand on the impact of sedation on patient and family comfort and feelings of helplessness. Family members expressed that sedation aided patient recovery, hyperactivity or delirium and assisted with patient and staff safety. Families shared that sedation was essential for patient comfort and admittedly necessary for their own comfort as well. Previous qualitative studies have reported on the general sense of vulnerability associated with being critically ill.^{9 17 20} Our study results highlight how patients and family members experience similar feelings of vulnerability as a direct result of sedation use in the ICU. Patients described feeling vulnerable because of sedation particularly affecting their cognition and ability to discern reality from hallucination. Family members described vulnerability (ie, fear, helplessness) due to the uncertainty in outcomes because of the way sedation masked their loved one as the person they know. This vulnerability was further highlighted in patients’ desire to maintain as much control as possible over their care and family members’ desire for communication and shared decision-making. Although shared decision making is widely advocated by critical care organisations, little emphasis to date has been placed on its role in the use of sedation in critically ill patients.^{21 22} Identifying ways by which to improve processes for shared decision-making related to ICU sedation practices may help to address the sense of vulnerability that patients and family members experiences during critical illness.

Information sharing and communication about sedation with patients and families was viewed as paramount. Both families and patients expressed a desire to increase their understanding of the ICU experience and better support with communication and guidance during their ICU admission. To navigate the ICU healthcare system, information pamphlets and patient and family navigators have been proposed to improve consistency and quality of information sharing with patients and family members.²³,²⁵ This may serve as a potential intervention to help address the communication challenges identified by patients and family members around sedation use in our study and reinforce reported desires of patients for control in their illness recovery during and after receiving sedation. Although not commonly used in the ICU, pilot studies have shown that the inclusion of patient and family navigators in the ICU enhanced consistent communication and improved the overall experience of patients and family members.²⁶ Whether this approach improves clinical and health system outcomes and has an application in sedation use remains an area of ongoing and potential investigation.²⁷,³¹

Implementing sedation practices that focus on light sedation in the ICU remains challenging and may have unintended impacts on patients and family members.³²,³⁶ Understanding patient and family perceptions and experience about sedation may address some of the challenges that come with implementing evidence-based best sedation practices in the ICU. Specific findings of our study, such as the need for information sharing, should be considered when designing system-wide implementation strategies to address some of the communication shortcomings reported by families and loss of self-determination expressed by patients. Toolkits developed for healthcare providers that improve the accuracy of the language used by healthcare providers about what sedation can and cannot do, such as facilitating medical interventions by reducing awareness but not treating pain, facilitating sleep or preventing post-traumatic stress disorder, may help patients and families understand and process their experiences. Patient and family members' understanding of their lived experience with sedation in ICU may be influenced in part by the language chosen by healthcare providers to describe sedation. While referring to sedation as ‘sleep’ or ‘comfort’ may be a common colloquial approach when referring to the effects of sedation, precise wording and clear communication may help patients and family members manage expectations around sedation and reduce some anxiety in ICU environment. The potential short and long-term effects of sedation cognitively, physically and psychologically should be shared as patients and family members clearly worry that sedation may have permanent and irreversible cognitive and physical consequences. Communication around uncertainty related to clinical course and the need for sedation may be relevant for families and may be encompassed as part of healthcare provider communication toolkits for family members in the ICU. Additional strategies that support patients and family members through the experience of delirium following sedation should also be considered as this can frequently be a distressing and confusing experience for both patients and family members, independent of sedation use. These strategies may include family members maintaining a daily journal for patients, education on delirium following sedation and participation in patient re-orientation.³⁷

Strengths and limitations

Our study has several strengths. The interview guide was developed and piloted by patient and family partners to ensure that questions were relevant to participants and their experience. Further, the analysis achieved conceptual richness and depth across both participant groups, with sufficient interpretive detail to meaningfully address the research aims. This study also had limitations. Family members were not asked if they were caregivers, which could have offered more insight into their experiences and understanding of their loved ones’ baseline condition. Participants were mostly of European ethnicity and with some degree of post-secondary education. Therefore, the voice of diverse visible and non-visible minority participants was not captured. Further, our study design included participants recruited from an academic, general mixed medical and surgical ICU which may not reflect the perspectives of patients and families admitted to other types of intensive care units such as regional or community hospitals. This study did not collect data on the time between sedation exposure and interviews; therefore, reported experiences may have varied according to the time elapsed since sedation. This study did not incorporate clinicians’ perspectives on patient and family experiences of sedation, which may offer valuable insight into potential strategies to improve patient-family centred care and optimise sedation practices in the ICU.

Conclusion

This study aimed to understand patient and family perceptions and experiences of sedation in the ICU. Patients and family members reported on the cognitive, physical and psychological impacts of sedation on their experiences in the ICU. Sedation was viewed as necessary to facilitate patient and family-centred care. Patients and families expressed a need for greater information sharing and a desire for family centred care and patient self-determination, respectively. The patient and family experience provide important insight into how sedation interventions are perceived in the ICU and identify key considerations for sedation optimisation. Future research should incorporate healthcare provider perspectives to better understand the intersecting experiences of patients, families and clinicians and to inform more patient and family-centred sedation practices in the ICU.

Data availability statement

Data are available upon reasonable request.