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NIHR Signal Delirium is common among adults receiving palliative care and could be better recognised

Published on 20 November 2018

doi: 10.3310/signal-000677

Between a quarter and two-thirds of adults admitted to specialist palliative care units experience delirium, or acute confusion.

The findings come from a mixed methods project which included a systematic review of the number of people living with delirium. Estimates are mostly applicable to older adults with advanced cancer.

The project also included interviews with nurses in Australian palliative care units to look at delirium assessment and use of screening tools. The findings highlighted that systems which formally diagnose delirium were not commonly used. Delirium guidelines made little reference to palliative care.

The qualitative findings may also have relevance to the UK, though systems will differ. They suggest a need for education and training about delirium among palliative care practitioners.

The implementation of hospital-based screening and assessment tools in specialist palliative care units might help with this, where recognition is poor.

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Why was this study needed?

Delirium can involve confusion, disorientation, altered consciousness, withdrawal and sleepiness (hypoactivity), or restlessness and agitation (hyperactivity). It is common among older adults, those with severe illness, dementia or other cognitive impairments, affecting up to a third of people on medical wards, up to half on surgical, and around a fifth in long-term care.

The hospice sector cares for over 200,000 people each year, around half of those with terminal and life-limiting conditions in the UK. In terminal illness, delirium affects many people in their final weeks. Recognition and reporting of delirium are poor, assessment is difficult, and it may be mistaken for dementia, depression or fatigue.

This mixed methods project aimed to investigate the epidemiology of delirium and its recognition and assessment in palliative care units.

What did this study do?

The first phase of the Delirium in Palliative Care Project (DePAC) involved a systematic review of studies reporting delirium prevalence among adults admitted to palliative care units.

The eight studies identified included a large proportion (99%) of people with advanced cancer. Two studies were from the UK, two the US, and others from Canada, Japan, Hong Kong and Taiwan. All were published between 1996 and 2008. The studies varied in sample size, how they defined end-of-life, the tools used to assess delirium, and frequency of assessment. No studies met all quality criteria.

The second phase involved interviews with nurses in palliative care units in Australia to explore their recognition and assessment of delirium, and to assess the feasibility of a brief screening tool (the Nursing Delirium Screening Scale, NuDESC). It also included a scan to look at the uptake of guideline recommendations.

What did it find?

  • In the systematic review, delirium prevalence on admission to palliative care units was reported at between 13% and 42% (five studies). Between 26% and 62% were reported to have delirium during their stay (four studies). Hypoactive delirium was the most common subtype, accounting for 68% to 86% of cases (three studies).
  • Two studies gave limited evidence that delirium prevalence was higher among adults nearing the end of life. One study reported 59% prevalence for adults who died during admission. The other reported 88% prevalence among adults in the last six hours of life.
  • Studies reporting at least daily screening reported a higher incidence of delirium (33-45%) than those reporting less frequent screening (3-7%).
  • The qualitative study, conducted in Australia, found that delirium guidelines gave little mention of palliative care and those available were mostly consensus-based. There were no routine systems in place for recognition and assessment of delirium in Australian units, and patients and families were rarely involved or consulted. Nurses typically aimed to relieve distress without performing a comprehensive assessment. This highlighted the need for point-of-care tools. Trialling of the Nursing Delirium Screening Scale, followed by physician diagnosis using DSM-V, indicated this as a feasible and acceptable tool.

What does current guidance say on this issue?

The NICE guideline (2010) and quality standard (2014) on delirium do not cover end-of-life or palliative care.

NICE guidelines on the care of adults in the last days of life (2015) recommend considering non-pharmacological management of delirium and exploring possible reversible causes. Antipsychotics may be considered but may cause unwanted sedation.

Scottish palliative care guidelines (2014) outline the assessment and management of delirium. They state that careful clinical assessment is key to diagnosis, and suggest the Mini-Mental State Examination or Confusion Assessment Method as possible screening tools.

What are the implications?

The prevalence of delirium among adults receiving palliative care appears similar to that among hospitalised adults with acute illness.

The qualitative study indicated that delirium is under-recognised in Australian palliative care units and this may be true in the UK too. The global studies also suggested a similar problem. These highlighted a lack of formal assessment and variation in tools used which may have accounted for variation in prevalence estimates.

Recognition and assessment of delirium by health professionals working in palliative care seem essential to support effective prevention and management. If the tools for screening and assessment in hospital were used in palliative care, delirium might be better managed.

Citation and Funding

Hosie A, Agar M, Lobb E et al. Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis. Int J Nurs Stud. 2017;75:123-9.

The project was funded through a Postgraduate Award by the Commonwealth Government of Australia.

Bibliography

Candy B, Jackson K, Jones L et al. Drug therapy for delirium in terminally ill adult patients. Cochrane Database Syst Rev. 2012;(11):CD004770.

Hosie A, Davidson P, Agar M, Sanderson C, Phillips J. Delirium prevalence, incidence, and implications for screening in specialist palliative care inpatient settings: a systematic review. Palliat Med. 2013;27(6):486-98.

Hosie A, Lobb E, Agar M, Davidson P et al. Measuring delirium point-prevalence in two Australian palliative care inpatient units. Int J Palliat Nurs. 2016;22(1):13-21.

Hospice UK. Hospice care: facts and figures. London: Hospice UK; 2018.

NHS Scotland. Scottish palliative care guidelines: delirium. 2014; updated 2016.

NHS website. Sudden confusion (delirium). London: Department of Health; 2018.

NICE. Delirium prevention, diagnosis and management. CG103. London: National Institute for Health and Care Excellence; 2010.

NICE. Care of dying adults in the last days of life. NG31. London: National Institute for Health and Care Excellence; 2015.

Why was this study needed?

Delirium can involve confusion, disorientation, altered consciousness, withdrawal and sleepiness (hypoactivity), or restlessness and agitation (hyperactivity). It is common among older adults, those with severe illness, dementia or other cognitive impairments, affecting up to a third of people on medical wards, up to half on surgical, and around a fifth in long-term care.

The hospice sector cares for over 200,000 people each year, around half of those with terminal and life-limiting conditions in the UK. In terminal illness, delirium affects many people in their final weeks. Recognition and reporting of delirium are poor, assessment is difficult, and it may be mistaken for dementia, depression or fatigue.

This mixed methods project aimed to investigate the epidemiology of delirium and its recognition and assessment in palliative care units.

What did this study do?

The first phase of the Delirium in Palliative Care Project (DePAC) involved a systematic review of studies reporting delirium prevalence among adults admitted to palliative care units.

The eight studies identified included a large proportion (99%) of people with advanced cancer. Two studies were from the UK, two the US, and others from Canada, Japan, Hong Kong and Taiwan. All were published between 1996 and 2008. The studies varied in sample size, how they defined end-of-life, the tools used to assess delirium, and frequency of assessment. No studies met all quality criteria.

The second phase involved interviews with nurses in palliative care units in Australia to explore their recognition and assessment of delirium, and to assess the feasibility of a brief screening tool (the Nursing Delirium Screening Scale, NuDESC). It also included a scan to look at the uptake of guideline recommendations.

What did it find?

  • In the systematic review, delirium prevalence on admission to palliative care units was reported at between 13% and 42% (five studies). Between 26% and 62% were reported to have delirium during their stay (four studies). Hypoactive delirium was the most common subtype, accounting for 68% to 86% of cases (three studies).
  • Two studies gave limited evidence that delirium prevalence was higher among adults nearing the end of life. One study reported 59% prevalence for adults who died during admission. The other reported 88% prevalence among adults in the last six hours of life.
  • Studies reporting at least daily screening reported a higher incidence of delirium (33-45%) than those reporting less frequent screening (3-7%).
  • The qualitative study, conducted in Australia, found that delirium guidelines gave little mention of palliative care and those available were mostly consensus-based. There were no routine systems in place for recognition and assessment of delirium in Australian units, and patients and families were rarely involved or consulted. Nurses typically aimed to relieve distress without performing a comprehensive assessment. This highlighted the need for point-of-care tools. Trialling of the Nursing Delirium Screening Scale, followed by physician diagnosis using DSM-V, indicated this as a feasible and acceptable tool.

What does current guidance say on this issue?

The NICE guideline (2010) and quality standard (2014) on delirium do not cover end-of-life or palliative care.

NICE guidelines on the care of adults in the last days of life (2015) recommend considering non-pharmacological management of delirium and exploring possible reversible causes. Antipsychotics may be considered but may cause unwanted sedation.

Scottish palliative care guidelines (2014) outline the assessment and management of delirium. They state that careful clinical assessment is key to diagnosis, and suggest the Mini-Mental State Examination or Confusion Assessment Method as possible screening tools.

What are the implications?

The prevalence of delirium among adults receiving palliative care appears similar to that among hospitalised adults with acute illness.

The qualitative study indicated that delirium is under-recognised in Australian palliative care units and this may be true in the UK too. The global studies also suggested a similar problem. These highlighted a lack of formal assessment and variation in tools used which may have accounted for variation in prevalence estimates.

Recognition and assessment of delirium by health professionals working in palliative care seem essential to support effective prevention and management. If the tools for screening and assessment in hospital were used in palliative care, delirium might be better managed.

Citation and Funding

Hosie A, Agar M, Lobb E et al. Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis. Int J Nurs Stud. 2017;75:123-9.

The project was funded through a Postgraduate Award by the Commonwealth Government of Australia.

Bibliography

Candy B, Jackson K, Jones L et al. Drug therapy for delirium in terminally ill adult patients. Cochrane Database Syst Rev. 2012;(11):CD004770.

Hosie A, Davidson P, Agar M, Sanderson C, Phillips J. Delirium prevalence, incidence, and implications for screening in specialist palliative care inpatient settings: a systematic review. Palliat Med. 2013;27(6):486-98.

Hosie A, Lobb E, Agar M, Davidson P et al. Measuring delirium point-prevalence in two Australian palliative care inpatient units. Int J Palliat Nurs. 2016;22(1):13-21.

Hospice UK. Hospice care: facts and figures. London: Hospice UK; 2018.

NHS Scotland. Scottish palliative care guidelines: delirium. 2014; updated 2016.

NHS website. Sudden confusion (delirium). London: Department of Health; 2018.

NICE. Delirium prevention, diagnosis and management. CG103. London: National Institute for Health and Care Excellence; 2010.

NICE. Care of dying adults in the last days of life. NG31. London: National Institute for Health and Care Excellence; 2015.

Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis

Published on 1 October 2017

Hosie, Annmarie,Agar, Meera,Lobb, Elizabeth,Davidson, Patricia M,Phillips, Jane

International journal of nursing studies Volume 75 , 2017

BackgroundDelirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess.ObjectivesTo report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units.MethodsThe Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion.ResultsThere was a moderate to high rate of delirium occurrence in palliative care unit populations; and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units.ConclusionImproving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting.

Expert commentary

Delirium at the end of life is a significant source of distress for patients, their families and clinicians.

This meta-synthesis highlights moderate to high levels of delirium amongst palliative care patients and reminds us that while routine screening and assessment are not commonplace, there is a strong argument for their inclusion in palliative care protocols.

However, the notable lack of systems for recognising and treating delirium in palliative care, despite guidance being available for other disciplines, reflects the action that is required to better integrate palliative care with the rest of the hospital population.

Clare Gardiner, Vice-Chancellor's Fellow, School of Nursing and Midwifery, The University of Sheffield

Expert commentary

What we know about delirium is primarily drawn from research conducted in hospitals and care homes. We know little about delirium among patients in palliative care settings, and there are gaps in knowledge such as those highlighted in this study.

This study revealed considerable variation in delirium prevalence and risk among patients in palliative care settings. This reflects the use of different measurement tools, different time-points at which delirium was assessed and different patient populations. Yet, by virtue of illness severity, older age, and presence of pain, patients in these settings are at high risk of developing delirium.

Lack of evidence is not a reason for complacency. Rather, it should act as a spur to develop policy, practice and research agendas aimed at increasing staff awareness of delirium and to develop practices to manage it in palliative care.

Dr Mary Godfrey, Reader in Health and Social Care, University of Leeds