The 4AT, a rapid delirium detection tool for use in hospice inpatient units: Findings from a validation study.

BACKGROUND: Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 'A's test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking. AIM: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients. DESIGN: A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment. SETTING/PARTICIPANTS: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years. RESULTS: A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%-98%) and a specificity of 94% (95% CI 90%-99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94-1). CONCLUSION: The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings. TRIAL REGISTRY: ISCRTN 97417474.

Acceptance and Commitment Therapy (ACT) for people with advanced progressive illness, their caregivers and staff involved in their care: A scoping review.

BACKGROUND: People with an advanced progressive illness and their caregivers frequently experience anxiety, uncertainty and anticipatory grief. Traditional approaches to address psychological concerns aim to modify dysfunctional thinking; however, this is limited in palliative care, as often concerns area valid and thought modification is unrealistic. Acceptance and Commitment Therapy is a mindfulness-based behavioural therapy aimed at promoting acceptance and valued living even in difficult circumstances. Evidence on its value in palliative care is emerging. AIMS: To scope the evidence regarding Acceptance and Commitment Therapy for people with advanced progressive illness, their caregivers and staff involved in their care. DESIGN: Systematic scoping review using four databases (Medline, PsychInfo, CINAHL and AMED), with relevant MeSH terms and keywords from January 1999 to May 2023. RESULTS: 1,373 papers were identified and 26 were eligible for inclusion. These involved people with advanced progressive illness (n = 14), informal caregivers (n = 4), palliative care staff (n = 3), bereaved carers (n = 3), and mixed groups (n = 2). Intervention studies (n = 15) showed that Acceptance and Commitment Therapy is acceptable and may have positive effects on anxiety, depression, distress, and sleep in palliative care populations. Observational studies (n = 11) revealed positive relationships between acceptance and adjustment to loss and physical function. CONCLUSION: Acceptance and Commitment Therapy is acceptable and feasible in palliative care, and may improve anxiety, depression, and distress. Full scale mixed-method evaluation studies are now needed to demonstrate effectiveness and cost-effectiveness amongst patients; while further intervention development and feasibility studies are warranted to explore its value for bereaved carers and staff.

Feasibility of RESTORE: An online Acceptance and Commitment Therapy intervention to improve palliative care staff wellbeing.

BACKGROUND: Acceptance and Commitment Therapy is a form of Cognitive Behavioural Therapy which uses behavioural psychology, values, acceptance and mindfulness techniques to improve mental health and wellbeing. Acceptance and Commitment Therapy is efficacious in treating stress, anxiety and depression in a broad range of settings including occupational contexts where emotional labour is high. This approach could help palliative care staff to manage work-related stress and promote wellbeing. AIM: To develop, and feasibility test, an online Acceptance and Commitment Therapy intervention to improve wellbeing of palliative care staff. DESIGN: A single-arm feasibility trial of an 8-week Acceptance and Commitment Therapy based intervention for staff, consisting of three online facilitated group workshops and five online individual self-directed learning modules. Data was collected via online questionnaire at four time-points and online focus groups at follow-up. SETTING/PARTICIPANTS: Participants were recruited from Marie Curie hospice and nursing services in Scotland. RESULTS: Twenty five staff commenced and 23 completed the intervention (93%). Fifteen participated in focus groups. Twelve (48%) completed questionnaires at follow-up. Participants found the intervention enjoyable, informative and beneficial. There was preliminary evidence for improvements in psychological flexibility (Cohen's d = 0.7) and mental wellbeing (Cohen's d = 0.49) between baseline and follow-up, but minimal change in perceived stress, burnout or compassion satisfaction. CONCLUSION: Online Acceptance and Commitment Therapy for wellbeing is acceptable to palliative care staff and feasible to implement using Microsoft Teams in a palliative care setting. Incorporating ways to promote long-term maintenance of behaviour changes, and strategies to optimise data collection at follow-up are key considerations for future intervention refinement and evaluation.

Exploration of delirium assessment and management in a hospice inpatient unit.

Background: Delirium is common across all palliative care settings. Guidelines exist to support the care of terminally ill people who develop delirium; yet the evidence base is limited. Recent surveys of palliative care specialists have suggested clinical practice is variable. Aim: To explore delirium assessment and management in a hospice inpatient setting. Methods: A mixed-methods study comprising a retrospective case note review of 21 patients admitted to a hospice inpatient unit and semi-structured interviews with seven hospice inpatient doctors and nurses. Results: A total of 62% of patients were screened for delirium on admission using the 4 As tool (4AT). The period prevalence of delirium was 76% during the 2-week study period. The term 'delirium' was documented infrequently in case notes, compared to other more ambiguous terms. Interview data suggested that nurses were unfamiliar with delirium screening tools. Conclusion: Lack of awareness about delirium screening tools and the infrequent use of the term 'delirium' may suggest that delirium goes under-recognised and under-treated. Further education and research are required to support the care of terminally ill people with delirium.

Validation of the 4AT tool for delirium assessment in specialist palliative care settings: protocol of a prospective diagnostic test accuracy study [version 1; peer review: 2 approved].

Background: Delirium is a serious and distressing neuropsychiatric condition, which is prevalent across all palliative care settings. Hypoactive delirium is particularly common, but difficult to recognize, partly due to overlapping symptoms with depression and dementia. Delirium screening tools can lead to earlier identification and hence better management of patients. The 4AT (4 'A's Test) is a brief tool for delirium detection, designed for use in clinical practice. It has been validated in 17 studies in over 3,700 patients. The test is currently used in specialist palliative care units, but has not been validated in this setting. The aim of the study is to determine the diagnostic accuracy of the 4AT for delirium detection against a reference standard, in hospice inpatients. Methods: 240 participants will be recruited from the inpatient units of two hospices in Scotland. If a patient lacks capacity to consent, agreement will be sought from a legal proxy. Each participant will complete the 4AT and a reference standard assessment based on the diagnostic delirium criteria in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This will be supplemented by tests of cognition and attention, including reverse days of the week, counting down from 20 to 1, Vigilance 'A', the Observational Scale for Level of Arousal, the modified Richmond Agitation Sedation Scale and the Delirium Rating Scale-Revised-98. The assessments will be conducted in a randomized order by two independent clinicians, who will be blinded to the results until both are complete. Primary outcomes will be the sensitivity and specificity of the 4AT in detecting delirium. Discussion: The findings will inform clinical practice regarding delirium assessment in palliative care settings. Trial registration: ISRCTN ISRCTN97417474 (21/02/2020).

Research Evaluating Staff Training Online for Resilience (RESTORE): Protocol for a single-arm feasibility study of an online Acceptance and Commitment Therapy intervention to improve staff wellbeing in palliative care settings.

Background: Palliative care staff commonly experience workplace stress and distress. General stressors include unmanageable workloads and staff shortages. Stressors specific to palliative care include regular exposure to death, loss and grief. The COVID-19 pandemic exacerbated exhaustion and burnout across the healthcare system, including for those providing palliative care. Evidence based psychological support interventions, tailored to the needs and context of palliative care staff, are needed. Acceptance and Commitment Therapy (ACT) is an established form of cognitive behavioural therapy which uses behavioural psychology, values, acceptance, and mindfulness techniques to improve mental health and wellbeing. ACT is effective in improving workplace wellbeing in many occupational settings. Our study examines the acceptability and feasibility of an online ACT-based intervention to improve mental health and wellbeing in staff caring for people with an advanced progressive illness. Methods: We plan a single-arm feasibility trial. We will seek to recruit 30 participants to take part in an 8- week online ACT-based intervention, consisting of three synchronous facilitated group sessions and five asynchronous self-directed learning modules. We will use convergent mixed methods to evaluate the feasibility of the intervention. Quantitative feasibility outcomes will include participant recruitment and retention rates, alongside completion rates of measures assessing stress, quality of life, wellbeing, and psychological flexibility. Focus groups and interviews will explore participant perspectives on the intervention. We will run a stakeholder workshop to further refine the intervention and identify outcomes for use in a future evaluation. Results: We will describe participant perspectives on intervention acceptability, format, content, and perceived impact, alongside rates of intervention recruitment, retention, and outcome measure completion. Conclusion: We will show whether a brief, online ACT intervention is acceptable to, and feasible for palliative care staff. Findings will be used to further refine the intervention and provide essential information on outcome assessment prior to a full-scale evaluation.

Palliative care staff commonly experience workplace stress and distress. General stressors include unmanageable workloads and staff shortages. Stressors specific to palliative care include regular exposure to death, loss and grief. The COVID pandemic increased exhaustion and burnout across the healthcare system, including for workers providing palliative care. An introduction to psychological therapies for professionals caring for people with a terminal illness may improve workplace wellbeing. Acceptance and Commitment Therapy (ACT) is an established form of cognitive behavioural therapy which uses behavioural psychology, values, acceptance, and mindfulness techniques to improve mental health and wellbeing. ACT is effective in improving workplace wellbeing in many occupational settings though has not yet been evaluated with hospice staff. Our study will examines whether a brief ACT intervention, delivered online, is helpful to hospice staff, and research on this can be carried out. We will seek to recruit 30 hospice staff participants to take part in an 8-week online ACT-based intervention, consisting of three online in-person group sessions and five self-directed learning modules. We will gather date from a range of sources, including questionnaires and focus groups, to work out whether there is value in this type of intervention. We will describe participant views on the intervention, what worked and what needs to be refined; alongside data on the number of people interested in participating and of those the proportion completing the intervention. We will show whether a brief, online ACT intervention can potentially improve wellbeing for palliative care staff, and can be evaluated in future studies. Findings will be used to further refine the intervention and provide essential information for future research.

Electronic care coordination systems for people with advanced progressive illness: a mixed-methods evaluation in Scottish primary care.

BACKGROUND: Electronic care coordination systems, known as the Key Information Summary (KIS) in Scotland, enable the creation of shared electronic records available across healthcare settings. A KIS provides clinicians with essential information to guide decision making for people likely to need emergency or out-of-hours care. AIM: To estimate the proportion of people with an advanced progressive illness with a KIS by the time of death, to examine when planning information is documented, and suggest improvements for electronic care coordination systems. DESIGN AND SETTING: This was a mixed-methods study involving 18 diverse general practices in Scotland. METHOD: Retrospective review of medical records of patients who died in 2017, and semi-structured interviews with healthcare professionals were conducted. RESULTS: Data on 1304 decedents were collected. Of those with an advanced progressive illness (79%, n = 1034), 69% (n = 712) had a KIS. These were started a median of 45 weeks before death. People with cancer were most likely to have a KIS (80%, n = 288), and those with organ failure least likely (47%, n = 125). Overall, 68% (n = 482) of KIS included resuscitation status and 55% (n = 390) preferred place of care. People with a KIS were more likely to die in the community compared to those without one (61% versus 30%). Most KIS were considered useful/highly useful. Up-to-date free-text information within the KIS was valued highly. CONCLUSION: In Scotland, most people with an advanced progressive illness have an electronic care coordination record by the time of death. This is an achievement. To improve further, better informal carer information, regular updating, and a focus on generating a KIS for people with organ failure is warranted.

Palliative and end-of-life care research in Scotland 2006-2015: a systematic scoping review.

BACKGROUND: The Scottish Government set out its 5-year vision to improve palliative care in its Strategic Framework for Action 2016-2021. This includes a commitment to strengthening research and evidence based knowledge exchange across Scotland. A comprehensive scoping review of Scottish palliative care research was considered an important first step. The aim of the review was to quantify and map palliative care research in Scotland over the ten-year period preceding the new strategy (2006-15). METHODS: A systematic scoping review was undertaken. Palliative care research involving at least one co-author from a Scottish institution was eligible for inclusion. Five databases were searched with relevant MeSH terms and keywords; additional papers authored by members of the Scottish Palliative and End of Life Care Research Forum were added. RESULTS: In total, 1919 papers were screened, 496 underwent full text review and 308 were retained in the final set. 73% were descriptive studies and 10% were interventions or feasibility studies. The top three areas of research focus were services and settings; experiences and/or needs; and physical symptoms. 58 papers were concerned with palliative care for people with conditions other than cancer - nearly one fifth of all papers published. Few studies focused on ehealth, health economics, out-of-hours and public health. Nearly half of all papers described unfunded research or did not acknowledge a funder (46%). CONCLUSIONS: There was a steady increase in Scottish palliative care research during the decade under review. Research output was strong compared with that reported in an earlier Scottish review (1990-2005) and a similar review of Irish palliative care research (2002-2012). A large amount of descriptive evidence exists on living and dying with chronic progressive illness in Scotland; intervention studies now need to be prioritised. Areas highlighted for future research include palliative interventions for people with non-malignant illness and multi-morbidity; physical and psychological symptom assessment and management; interventions to support carers; and bereavement support. Knowledge exchange activities are required to disseminate research findings to research users and a follow-up review to examine future research progress is recommended.

The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review.

OBJECTIVES: To explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient. METHODS: Four electronic databases were searched-PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms 'delirium', 'terminal restlessness' or 'agitated restlessness' combined with 'carer' or 'caregiver' or 'family' or 'families'. Thirty-three papers met the inclusion criteria and remained in the final review. RESULTS: Papers focused on (i) caregiver experience-distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role-detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support-information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes. CONCLUSION: High levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver-patient relationship can be re-established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.© 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd.

Delirium diagnostic and classification challenges in palliative care: subsyndromal delirium, comorbid delirium-dementia, and psychomotor subtypes.

CONTEXT: Delirium often presents difficult diagnostic and classification challenges in palliative care settings. OBJECTIVES: To review three major areas that create diagnostic and classification challenges in relation to delirium in palliative care: subsyndromal delirium (SSD), delirium in the context of comorbid dementia, and classification of psychomotor subtypes, and to identify knowledge gaps and research priorities in relation to these three areas of focus. METHODS: We combined multidisciplinary input from delirium researchers and knowledge users at an international delirium study planning meeting and relevant PubMed literature searches as the knowledge synthesis strategy in this review. RESULTS: We identified six (SSD), 33 (dementia), and 44 (psychomotor subtypes) articles of relevance in relation to the focus of our review. Recent literature data highlight the frequency and impact of SSD, the relevance of comorbid dementia, and the propensity for a hypoactive presentation of delirium in the palliative population. The differential diagnoses to consider are wide and include pain, fatigue, mood disturbance, psychoactive medication effects, and other causes for altered consciousness. CONCLUSION: Challenges in the diagnosis and classification of delirium in people with advanced disease are compounded by the generalized disturbance of central nervous system function that occurs in the seriously ill, often with comorbid illness, including dementia. Further research is needed to delineate the pathophysiological and clinical associations of these presentations and thus inform therapeutic strategies. The expanding aged population and growing focus on dementia care in palliative care highlight the need to conduct this research.

End-of-life delirium: issues regarding recognition, optimal management, and the role of sedation in the dying phase.

CONTEXT: In end-of-life care, delirium is often not recognized and poses unique management challenges, especially in the case of refractory delirium in the terminal phase. OBJECTIVES: To review delirium in the terminal phase context, specifically in relation to recognition issues; the decision-making processes and management strategies regarding its reversibility; the potential refractoriness of delirium to symptomatic treatment; and the role of sedation in refractory delirium. METHODS: We combined multidisciplinary input from delirium researchers and knowledge users at an international delirium study planning meeting and relevant electronic database literature searches (Ovid Medline, Embase, PsycINFO, and CINAHL) to inform this narrative review. RESULTS: The overall management strategy for delirium at the end of life is directed by the patient's prognosis in association with the patient's goals of care. As symptoms of delirium are often refractory in the terminal phase, especially in the case of agitated delirium, the judicious use of palliative sedation is frequently required. However, there remains a lack of high-level evidence for the management of delirium in the terminal phase, including the role of antipsychotics and optimal sedation strategies. For the family and health-care staff, clear communication, education, and emotional support are vital components to assist with decision making and direct the treatment care plan. CONCLUSION: Further research on the effectiveness of delirium management strategies in the terminal phase for patients and their families is required. Further validation of assessment tools for diagnostic screening and severity measurement is needed in this patient population.

Hypoactive delirium: assessing the extent of the problem for inpatient specialist palliative care.

Delirium is a common problem and cause of distress among patients with palliative care needs. The focus to date has been on managing the patient with agitated, hyperactive delirium, as these patients are very noticeable within the palliative care setting. This study in two parts shows that palliative care patients with agitated delirium are a minority of the total proportion of those with delirium. Part I: 100 acute admissions to a specialist palliative care unit were assessed and while 29% were found to have delirium, 86% of these had the hypoactive subtype of delirium. We also demonstrated a positive correlation between high ratings on a depression screening tool and delirium severity ratings. Part II: 8 specialist palliative care units took part in a point prevalence study of delirium over a 48-hour period. One hundred and nine patients were assessed and while 29.4% of these inpatients had delirium, 78% of them had the hypoactive subtype. Patients with hypoactive delirium may be much less noticeable or may be misdiagnosed as having depression or fatigue and the results of this study would advocate the routine use of delirium screening tools in all palliative care settings.