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The Royal Marsden School

Management of terminal agitation and its impact on patients and healthcare professionals

By Felicity Hafner and Martin Galligan
Benjamin Elliott - green and white maze
Tue, 07/04/2020

Terminal agitation is a palliative symptom that can be experienced as a patient enters the last days and hours of their life (Clark, 2017). It can be defined as the irreversible cognitive impairment or delirium that displays as restless behaviour (Hosker and Bennett, 2016). Many patients suffer from delirium in the last days of their life. This is often displayed as agitation, thus the two definitions are subjective and often over-lap (Bush, Tierney and Lawlor, 2017). The exact incidence of terminal agitation is difficult to determine due to numerous of factors such as the variety of causes and definitions of agitation and delirium and the use of multiple measurement tools. However, based on a recent systematic review its prevalence was estimated at 59% agitation in patients that passed away and 88% in the last six hours of life (Hosie, 2017). This study concluded that the variation in assessment tools contributed to the wide variation in prevalence and thus demonstrated the need for a standardised tool to increase accuracy in reporting.

Although it is apparent terminal agitation is a common symptom in palliative care (Nunn, 2014) there is little up to date research conducted relating to the prevalence of the symptom as a terminal event and in what disease. The reason has been highlighted by Higginson (2016), who identified that funding is a barrier to palliative research as funding is spent on curative research. And therefore more focus is needed in this area. 

Despite the unknown prevalence, the wider impact of terminal agitation on healthcare professionals can be explored. Although healthcare professionals are aware they will encounter emotional stimuli and death during their professional career, the impact it has on them as individuals is often dismissed (Ingebretsen and Sagabakken, 2016). Although the stress experienced by a nurse is recognised by NICE (2017b), in practice it is often ignored and seen as a given due to the nature of the job (Koinis et al, 2015). Consequentially nursing staff are not receiving the recognition and support they need (Koinis et al., 2015). Brajtman, Higuchi and Mcpherson (2006) conducted a qualitative study exploring the impact terminal agitation can have on nursing staff. One of the common themes identified was that terminal agitation as a symptom can cause a nurse to feel distressed due to the inability to make the patient comfortable. It is understandable why this terminal symptom can leave the healthcare professional feeling helpless and with a feeling of inability to do their job. However, a healthcare professional should acknowledge that not all symptoms in palliative care can be controlled straight away, it is a process (Seymour et al, 2015). The use of qualitative research in this study achieved the sensitive nature of the experience to be documented to provide insight into practise. The common themes identified can be applied to practice and should fuel future research to further identify the impact on nursing staff and the MDT, additionally how to resolve the distress. Hosie et al. (2014) also provided qualitative evidence on the negative impact that looking after an agitated patient can have on the nurse such as feeling helpless and sad due to the distress observed. Unfortunately, this study did not look at agitation as a terminal event. Therefore, attitudes of the nurses could be consequentially different if they know the delirium will resolve.

Given the impact of this symptom on the healthcare professional there is a need for greater support and guidance in its assessment and management. NICE (2019a) guidelines on assessment and management of delirium do not recognise it as a terminal event. Although there are many UK and national palliative care guidelines on the management of symptoms, (NICE, 2017a; Scotland, 2019) they only briefly touch on terminal agitation, ignoring the complexity of the symptom and the challenges experienced (Brajtman et al., 2011). Furthermore, there are many contributing factors that can exacerbate terminal agitation, such as pain, incontinence, urinary retention, environment and sepsis (Chand, 2013) - highlighting the importance of looking at the patient as a whole. Therefore, it is important to optimise management for the contributing factors and if ineffective, palliative sedation is often required for symptom management (Bush et al, 2018). 

NICE (2019b) guidelines indicate that midazolam is licenced for restlessness in palliative care. However, the contraindications include respiratory depression and central nervous system depression (NICE, 2019b) that can be perceived to hasten the dying process, consequentially causing ethical dilemmas around the administration of midazolam (Barathi and Chandra, 2013). De vries and Plaskota (2017) identified that that a main ethical dilemma faced by nursing staff in administering palliative sedation (including for terminal agitation) is the fear of causing the death. Wilson et al (2015) supported this by identifying that community and nursing home nurses had a fear of administering anticipatory medications, including palliative sedation. Firstly, due to the inability to distinguish between pain and agitation, and secondly due to the idea it may hasten death. 

Furthermore, it can be questioned that if a nurse feels they will hasten a death with palliative sedation, does this reduce the administration to patients that are in need of palliative sedation. Charalambous et al (2019) supported this statement by demonstrating opiophobia in healthcare professionals and patient/caregivers was a barrier to opioid administration in cancer patients causing poor pain control. Lack of education and training was identified as the likely cause of opiophobia with Gielen et al (2011) supporting this and identifying the need for an improvement in pain assessment and validated tools. However, there is little UK and worldwide research to provide profound evidence, potentially due to the sensitivity of the subject. Additionally, it is unlikely a nurse would admit not administering palliative sedation due to breaking the code of practise to deliver the fundamentals of care (Muunion, Gnjidic and hilmer, 2010; NMC, 2018). This subsequently creates a catalyst for future research to break down the barriers, looking in particular at appropriate methodology such as anonymising the participants to achieve improved patient care. 

It has become apparent that the prevalence of terminal agitation is unknown, and as such healthcare professionals would benefit from a standardised assessment tool. Moreover, the full extent of the impact of terminal agitation on healthcare professionals has not been discovered, and this is clearly an area requiring further research; managers and other healthcare professionals also need to be able to support colleagues to resolve the distress created. From the literature discussed, it is apparent that there is a need for increased training and support of professionals to reduce the fear behind administering palliative sedation and consequentially, increase the quality of life of the patient (WHO, 2018). 


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