Delirium is defined as a disturbance in attention and awareness that has developed over a short period of time, with disturbance in cognition not better explained by a pre-existing or evolving neurocognitive disorder (American Psychiatric Association (APA), 2013). Delirium is under-recognised due to the diversity and transient nature of the symptoms and because hypoactive delirium has the potential to be misdiagnosed as depression or fatigue (Spiller and Keen, 2006; Marchington et al, 2012).
Delirium is common across clinical settings (Pendlebury et al, 2015; Marcantonio, 2017) but is particularly common in palliative care, where its prevalence has been found to be up to 12% at initial community assessment and 88% in the final weeks of life (Watt et al, 2019). Medications, electrolyte imbalances, infection, organ failure and hypoxia may be implicated (Irwin et al, 2013). Delirium indicates a poor prognosis in palliative care patients, precipitating increased hospital admissions, morbidity and mortality (Bush et al, 2018), as well as communication loss (Lowe et al, 2016) and patient and family distress (Finucane et al, 2017).
National guidelines inform delirium identification and management (National Institute for Health and Care Excellence (NICE), 2010; NHS Scotland, 2019; Scottish Intercollegiate Guidelines Network (SIGN), 2019). In most settings, routine delirium screening is recommended. Tools such as the 4AT can be used for this purpose (www.the4at.com) (MacLullich, 2020). This simple tool is brief, requires no special training and is used and recommended across clinical settings as a sensitive way of detecting delirium (Bellelli et al, 2014; De et al, 2017; Shenkin et al, 2019; SIGN, 2019). Though not yet been validated in palliative care, it is sometimes used in this setting (Baird and Spiller, 2017).
Management of delirium encompasses treating potentially reversible causes and using non-pharmacological and pharmacological interventions (Boland et al, 2019b). Up to half of all delirium cases in terminally ill patients are reversible if the underlying causes are identified and treated (Lawlor et al, 2000). Non-pharmacological strategies are recommended to prevent the development of delirium and treat established delirium (Bush et al, 2018; SIGN, 2019), as follows:
- Reorientation
- Reassurance
- Noise and light minimisation
- Supporting nutrition, hydration and sleep hygiene
- Optimising pre-existing disease management.
Pharmacological management is only recommended where the patient is distressed and non-pharmacological strategies have failed (SIGN, 2019). A recent Cochrane review found little evidence to support pharmacotherapy for delirium symptoms in terminally ill patients (Finucane et al, 2020) and showed that some drug therapies may worsen symptoms in mild-to-moderate delirium (Agar et al, 2017).
Many terminally ill people prefer to be cared for at home (Gomes et al, 2013). Delirium management can be provided in patients' homes (Irwin et al, 2013), but delirium may still contribute to unplanned admissions if the patient or caregivers become distressed (Boland et al, 2019a). Palliative care community clinical nurse specialists (CNSs) provide palliative care to terminally ill people and their families in a community setting, working collaboratively with other community health professionals who may provide generalist palliative care, such as GPs and district nurses.
Few studies have explored delirium management in a community palliative care setting. Given the increase in number of people projected to die in care homes and at home (Bone et al, 2018; Finucane et al, 2019), understanding practice and the unique challenges of the community setting is useful to guide future education and service improvement and to optimise patient care. This study examines palliative care CNSs' experiences and their practice in managing delirium in terminally ill patients in the community, specifically with the aim of answering the following questions:
- How is delirium assessed in a community palliative care setting?
- How is delirium managed in the community?
- What challenges are experienced in this setting?
- What additional support could be given to improve delirium assessment and management in this setting?
Methods
This was a qualitative study with face-to-face semi-structured interviews. The setting was a specialist community palliative care team working from a hospice base in Lothian, Scotland.
Palliative care community CNSs provide specialist palliative care and support to patients and caregivers in community settings, including symptom control and emotional, psychological, practical and spiritual care. They also provide support, advice and education to GPs and district nurses. New patients are comprehensively assessed at an initial visit lasting up to 2 hours. CNSs employed by the community teams involved in this study had been offered in-service delirium educational updates. Several CNSs had additionally been involved in delirium workshops for district nurses and care home healthcare providers. These were led by palliative care physicians with case discussions facilitated by CNSs, who received training prior to the workshops.
Eligible participants consisted of all CNSs working across two community teams. The student researcher (CH) explained the study and distributed information sheets ahead of the interviews. Some 10 CNSs were recruited to take part; three eligible CNSs were not recruited as they were on annual leave. Participants were given information sheets and the opportunity to ask questions before signing consent forms.
Data collection
Face-to-face semi-structured qualitative interviews were conducted by the researchers over a 3-day period in September 2019 in private meeting rooms located at the study site. Interviews lasted up to 30 minutes and were audio-recorded and later transcribed verbatim.
Data analysis
Data analysis was informed by a framework approach, a method of structured thematic data analysis that sorts and views data in a matrix (Gale et al, 2013; Ward et al, 2013). This transparent charting and systematic step-by-step process increases credibility and dependability (Dixon-Woods, 2011; Gale et al, 2013; Ward et al, 2013). Transcriptions were coded manually by the student researcher using the computer-assisted qualitative data analysis package NVIVO (version 12) to aid on-screen coding and provide a clear trail of analysis (Welsh, 2002).
Research governance and ethical considerations
As this was an evaluation of practice involving healthcare staff, NHS ethics approval was not required. Marie Curie research governance approved the study on 20 August 2019. Participants provided written consent and were informed they could withdraw at any time. Identifiable information was removed during transcription to ensure anonymisation. The reporting guideline COREQ (criteria for reporting qualitative research) was used to aid transparency and structure of reporting (Tong et al, 2007).
Results
Participant characteristics
All 10 recruited participants were women, and their community palliative care experience varied from 1 to 20 years. Seven participants had previously facilitated delirium workshops for district nurses and/or care home healthcare providers and/or attended delirium education sessions (Table 1). Three participants reported no specific delirium training.
Table 1. Summary of participant characteristics
| Participant | Experience as community palliative care CNS | Recent delirium training (previous 3 years) |
|---|---|---|
| 1 | >5 years | Delirium education session; delirium workshop facilitator |
| 2 | >5 years | Delirium education session; delirium workshop facilitator |
| 3 | ≤5 years | Delirium education session; delirium workshop facilitator |
| 4 | ≤5 years | None |
| 5 | ≤5 years | None |
| 6 | ≤5 years | Delirium education session |
| 7 | ≤5 years | None |
| 8 | >5 years | Delirium education session; delirium workshop facilitator |
| 9 | >5 years | Delirium education session; delirium workshop facilitator |
| 10 | ≤5 years | Delirium education session; delirium workshop facilitator |
CNS=clinical nurse specialist
Themes
Six themes were identified, namely, challenges of a community setting; detection of delirium; management of delirium; role of informal caregivers; education for CNSs; and education for external community health professionals.
Challenges of a community setting
Participants described the challenges of managing delirium in a community setting. They said that limited patient contact makes identifying symptoms and changes more difficult, especially delirium, given the fluctuating nature of the symptoms.
‘We are only in for a short period of time in the day, we only get a snapshot.’
P2
Families can provide a patient history but may report symptoms inconsistently and find implementing non-pharmacological strategies difficult.
‘The relatives don't realise it is something to look out for.’
P10
Nighttime agitation was described as particularly challenging in community settings. Informal caregivers are often the only people in the house at this time and may find it difficult to cope.
‘A lot of delirium happens overnight … everything is heightened overnight … families are really quite distressed, they are tired, not getting a good sleep, and that rubs over into the next day.’
P3
Access to and changing medication doses in the community requires prompt prescribing by GPs and is labour intensive for CNSs.
‘You can't increase the doses up the same as you can do in an inpatient unit.’
P2
Many participants expressed frustration at the lack of delirium awareness among some community health professionals and said that they were not alerted to delirium cases soon enough.
‘It's our colleagues not realising that this is what is going on … not alerting us to delirium.’
P1
Finally, participants reported the difficulties in identifying fluctuating symptoms and initiating non-pharmacological approaches for patients living alone, who also present safety concerns.
Detection of delirium
Participants mainly assessed for delirium by talking to the patient and observing any symptoms. Information and updates from informal caregivers or district nurses were also considered useful.
‘[We] know our patients fairly well, so it's just noticing if there is any changes in their behaviour.’
P2
All participants reported using the 4AT as a delirium assessment tool if they suspected delirium. A minority reported its routine use at initial assessment.
‘Picking up cues from the family … and what you are observing … might prompt something like the 4AT, but it's not something that I routinely use.’
P7
Perceived barriers to using the 4AT included limited time at the initial assessment, potential for distressing patients and the lack of clarity regarding frequency and indications for use.
‘Visits go on and on forever … we just have so much to do in that first visit that it's hard to tailor it all in.’
P4
Management of delirium
Participants reported looking for reversible causes early in management and treatment if appropriate; infection was commonly mentioned. Only one participant mentioned other reversible causes.
‘We would look for any reversible causes of delirium-hypercalcaemia, infection, medicines-and make changes as appropriate and try them with antibiotics to see if things help.’
P2
Most participants described non-pharmacological strategies for first-line management, including reassurance, sitting with the patient, talking, music, re-orientation and sleep hygiene. Three participants did not use non-pharmacological strategies.
‘We always look at the non-pharmacological approaches first, re-orientating to time and place for mild delirium, trying to reassure a patient where they are and who they are with … familiar surroundings.’
P3
Pharmacological strategies were predominantly haloperidol-based and limited to severe delirium insufficiently controlled by non-pharmacological strategies. A minority described using haloperidol first-line.
‘There are occasional situations where nothing works, and (we have) to sedate them because that is the only safe way of managing them.’
P1
When asked directly if they use strategies to prevent delirium, most participants stated that they did not use preventative approaches. One participant suggested trying to prevent triggers for delirium.
‘It's just looking for the triggers that might contribute to delirium and trying to prevent that from happening.’
P2
Role of informal caregivers
All participants acknowledged informal caregivers' role in identifying symptoms of delirium, communicating with CNSs and implementing non-pharmacological strategies.
‘They know their loved one better than anyone else. They can be quite expert … looking for symptoms and managing symptoms and communicating that things are different.’
P5
Participants described educating caregivers to enable them to assist with detection and management.
‘I think just the families knowing who they can contact … talking them through the non-pharmacological stuff like reassurance, familiar things around them, a calm environment.’
P2
Participants perceived that caregivers felt more in control when they were educated and benefited from having something to do.
‘Hopefully, you are also managing someone's anxiety, and they know what to expect and are able to, kind of, feel more in control to report that and have it managed.’
P6
Participants did not routinely discuss delirium at the first assessment. Preventing unnecessary distress was the main reason for not preparing caregivers earlier.
‘I think, sometimes, it can be difficult to put something into somebody's mind and say this may happen …potentially, it gives them something to worry about.’
P8
Earlier education of caregivers was suggested by participants. One suggestion was providing written information to caregivers ahead of time.
‘If we spoke to the families about maybe pre-empting delirium and say “look, this may happen and look for these signs …”’
P8
Education of CNSs
Management of delirium differed between participants who had facilitated delirium workshops for external community healthcare providers and those who had not. Workshop facilitators focused on non-pharmacological management, engaged caregivers in identification and management and used pharmacological interventions only when necessary to control symptoms.
‘Guiding the family as to what they can do, you know, did they like music, having that playing in the background, having things that are familiar to them round about.’
P2
Conversely, those without delirium education favoured early pharmacological intervention, rarely used non-pharmacological interventions or involved caregivers and seemed less confident in their practice.
‘I have never thought about families checking (for symptoms of delirium) before.’
P4
Several participants expressed the benefits of facilitating delirium workshops in order to consolidate and reinforce their knowledge.
‘Facilitating delirium workshops offered to the district nurses, that is always a refresher to us as well, listening to the presentation.’
P2
Education for external community health professionals
Improving education for community health professionals was commonly suggested. Participants involved in delirium workshops expressed the difference they noticed in the health professionals' awareness of delirium after attending the workshops.
‘Upskilling our external colleagues, which we are doing, (has) been really helpful actually, and they have found it really beneficial.’
P3
Discussion
This study demonstrated the unique features of assessing and managing delirium in a community setting. Limited time with patients, relying on caregivers and access to medications make managing delirium difficult in the community. Awareness of these challenges highlights where improvements could be made, for example, earlier caregiver education to help identify delirium and implement non-pharmacological management (Finucane et al, 2017). Good collaboration with district nurses could alleviate some of the time constraints and information sharing with GPs could optimise access to anticipatory medication (Brajtman et al, 2006; Tapsfield et al, 2016).
Participants reported using a delirium screening tool such as the 4AT only when delirium was suspected, owing to time constraints, concerns about distressing patients and the need for repeated assessments to detect delirium. This potentially misses early or hypoactive delirium. Inconsistent delirium screening is prevalent in palliative care (Boland et al, 2019a) despite recommendations to screen all patients and repeat screening regularly (Bush et al, 2018). Time spent completing the 4AT may prevent distress in the long term with early detection and management (Partridge et al, 2013; Bellelli et al, 2014). Some participants were unclear whether multiple 4AT assessments were needed to detect delirium, despite the 4AT being designed for single assessment and not monitoring (MacLullich, 2020). Ongoing education and training regarding the 4AT in community contexts should be considered, given its potential benefits as a brief assessment tool (Bellelli et al, 2014).
Participants rarely discussed reversible causes of delirium other than infection, suggesting these causes may occasionally go undetected and untreated (Lawlor et al, 2000). Increased awareness of these could prevent negative outcomes of uncontrolled delirium. In the present study, only a minority of participants did not employ non-pharmacological interventions. Given guideline recommendations stating their potential for benefit and absence of harm (SIGN, 2019), all CNSs should implement these first-line. Participants generally used pharmacological strategies in accordance with guidelines, that is, only in moderate-to-severe delirium where non-pharmacological approaches had proved ineffective (SIGN, 2019). Based on the inefficacy and harms of pharmacotherapy in mild-to-moderate delirium (Agar et al, 2017; Finucane et al, 2020), antipsychotics should be avoided in these patients.
None of the participants explicitly used strategies to prevent delirium development. Evidence from hospitalised populations suggests that non-pharmacological interventions potentially reduce the incidence of delirium (Hshieh et al, 2015; Oh et al, 2017), and guidelines recommend their use (SIGN, 2019); prevention strategies should be included in future delirium training.
Participants acknowledged the importance of informal caregivers in supporting care in the community where nursing presence is less. Caregivers' intimate knowledge of the patient can help identify delirium early (Kerr et al, 2013; Finucane et al, 2017), and they are well-placed to try non-pharmacological prevention and management strategies (Martinez et al, 2012). Literature suggests that being able to help the patient also benefits caregivers (Irwin et al, 2013). Participants generally offered advice to caregivers once delirium or risk factors were identified. Evidence suggests that caregivers prefer being prepared earlier of the possibility of delirium developing, as preparation could reduce distress and increase their confidence in aiding delirium identification and management (Gagnon et al, 2002; Otani et al, 2013).
Participants who had facilitated delirium workshops felt that receiving education prior to the workshop and then reinforcing it by facilitating discussions with others was beneficial to their learning. They reported clinical practice more consistent with guidelines. Learning with the anticipation of teaching others has been shown to result in a greater depth of understanding than learning alone (Fiorella and Mayer, 2013). Participants also identified the increased knowledge of delirium among healthcare providers who participated in delirium workshops. Given the potential educational benefit for facilitators and attendees (O'Brien et al, 2001), more people could be encouraged to get involved in workshops or other delirium education initiatives. Such approaches, bringing together palliative care specialists with professionals providing essential non-specialist palliative care in the community, are often recommended and help ensure that more people dying in a community setting receive good palliative care when needed (Murray et al, 2017; Finucane et al, 2019).
As delirium is commonly experienced by people approaching the end of life, district nurses should be aware of delirium and liaise closely with caregivers to identify symptoms; using a delirium assessment tool use could be beneficial. Understanding national delirium guidelines and seeking advice from specialists when required will help ensure good management of delirium in the community.
Strengths and limitations
To the authors' knowledge, this is the first qualitative study examining the perspectives of CNSs regarding the assessment and management of delirium in a community setting. However, as this was an evaluation of one specific palliative care setting, the results may not be generalisable to other contexts. Most participants in this study had previously received some delirium training. In settings without such training, insights into delirium and its management may differ.
Future research
Given the projected increase in need for community palliative care provision (Etkind et al, 2017), research focusing on community management and prevention of delirium is needed to guide clinical practice and reduce negative sequelae. Further studies to design, evaluate and implement delirium education interventions for caregivers, district nurses, GPs, and palliative care CNSs are required.
Conclusions
Challenges in identifying and managing delirium in palliative care in the community include access to family carer support; limited time with patients; nighttime symptoms; and access to and changing medications. Training and collaboration with families and community colleagues are possible strategies to address these challenges. The participants in the present study reported that they used formal delirium assessment tools only where delirium was already suspected; more consistent use of these tools may improve early detection. CNSs acknowledged informal caregivers' role in identifying and management of delirium in the community, and early, consistent caregiver education could be implemented.
KEY POINTS
- Many palliative care patients prefer to be cared for at home, but delirium can lead to unplanned admissions
- Challenges of managing delirium in palliative care in the community include limited patient contact, reliance on family, nighttime symptoms and patients living alone
- Delirium assessment tools are not routinely used by clinical nurse specialists (CNSs)
- Most participants described using non-pharmacological strategies for first-line management, although they did not do so preventatively
- CNSs felt that informal caregivers had a role in identifying and managing delirium in the community and that they themselves had a role in educating the caregivers
CPD REFLECTIVE QUESTIONS
- How do you assess and manage delirium in your setting?
- What education and training have you received regarding managing delirium in the community?
- How could you incorporate delirium assessment tools such as the 4AT into your practice?
- How could you incorporate delirium prevention strategies in your practice?