The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis

Abstract

Background: Delirium is common in palliative care settings and is distressing for patients, their families and clinicians. To develop effective interventions, we need first to understand current delirium care in this setting. Aim: To understand patient, family, clinicians’ and volunteers’ experience of delirium and its care in palliative care contexts. Design: Qualitative systematic review and thematic synthesis (PROSPERO 2018 CRD42018102417). Data sources: The following databases were searched: CINAHL, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Embase, MEDLINE and PsycINFO (2000–2020) for qualitative studies exploring experiences of delirium or its care in specialist palliative care services. Study selection and quality appraisal were independently conducted by two reviewers. Results: A total of 21 papers describing 16 studies were included. In quality appraisal, trustworthiness (rigour of methods used) was assessed as high ( n = 5), medium ( n = 8) or low ( n = 3). Three major themes were identified: interpretations of delirium and their influence on care; clinicians’ responses to the suffering of patients with delirium and the roles of the family in delirium care. Nursing staff and other clinicians had limited understanding of delirium as a medical condition with potentially modifiable causes. Practice focused on alleviating patient suffering through person-centred approaches, which could be challenging with delirious patients, and medication use. Treatment decisions were also influenced by the distress of family and clinicians and resource limitations. Family played vital roles in delirium care. Conclusions: Increased understanding of non-pharmacological approaches to delirium prevention and management, as well as support for clinicians and families, are important to enable patients’ multi-dimensional needs to be met.

Improving the Detection, Assessment, Management and Prevention of Delirium in Hospices (the DAMPen-D study): protocol for a co-design and feasibility study of a flexible and scalable implementation strategy to deliver guideline-adherent delirium care

“…A recent international qualitative systematic review identified that practical and emotional support were needed to enable staff to assess, prevent and manage delirium. 15 A recent survey of palliative care doctors (n=335) in the UK found that 38% never used delirium guidelines and that only 13% of palliative care teams used a tool (rather than clinical judgement) to assess for delirium at first inpatient assessment, with even fewer (9%) using a tool on an ongoing basis. 16 Our survey of UK specialist palliative care units (n=220, mostly nurses) 17 found that only 10% ever used a delirium screening tool, with only 5% following NICE guidelines by screening on admission, and only 6% screening daily thereafter.…”

“…A recent international qualitative systematic review identified that practical and emotional support were needed to enable staff to assess, prevent and manage delirium. 15 …”

“…However, this is difficult in practice, with a disconnection between improved levels of delirium knowledge and the capacity of palliative care practitioners to implement changes. A recent international qualitative systematic review identified that practical and emotional support were needed to enable staff to assess, prevent and manage delirium 15…”

Stakeholder perspectives of a pilot multicomponent delirium prevention intervention for adult patients with advanced cancer in palliative care units: A behaviour change theory-based qualitative study

“…6,11 Clinicians as well often lack requisite knowledge and environmental resources to reduce patients' risk of delirium. 12,13 Cognisant of both the potential for and barriers to preventing delirium, in 2017-18 we conducted a phase II cluster randomised controlled trial of a multicomponent non-pharmacological delirium prevention intervention for patients with advanced cancer in four Australian palliative care units ('the PRESERVE pilot study'). 14,15 Recruitment and implementation were at the site level, with 65 patients across the four sites enrolled for quantitative data collection.…”

Clinicians’ delirium treatment practice, practice change, and influences: A national online survey

“…Delirium is an acute neurocognitive condition that adversely affects many people with life-threatening illness, as well as those who care for them. [1][2][3][4] Antipsychotics are widely used in palliative care for delirium. 5 Yet, in 2017, a large Australian multi-site, double-blind randomised controlled trial of risperidone or haloperidol or placebo for patients with disturbed perception, behaviour and/or communication during delirium in 11 palliative care units (the 'Agar et al 6 trial') reported significantly lower symptom scores, fewer extrapyramidal effects, lower use of crisis midazolam and better survival in participants receiving placebo.…”