Abstract
The aim of this study was to develop delirium care pathways (DCPs) useable and relevant for registered practitioners in all care settings: community; acute; and nursing homes. A qualitative approach was adopted to develop the pathways inductively. Focus groups and one-to-one interviews with registered practitioners (n = 45) working as managers, practitioners and clinical nurse consultants were undertaken to develop draft versions of the pathways, which was pilot trialled across 19 clinical settings. The publication of the DCPs was a concise and easily readable document for registered practitioners who required immediate guidance on how to implement evidence-based delirium care for older people and their family carers, including three patient journeys explaining best-practice delirium care in community, acute and nursing home care settings, a webpage resource and printable posters of the pathways' patient journeys to promote the use of the pathways in clinical settings. The work undertaken to develop the pathways was further developed through new policy documents, state-wide initiatives to improve delirium care in hospitals, development of educational resources on delirium care and other knowledge translation projects on this topic.
Keywords
Introduction
Delirium is characterised by its sudden and acute onset, even occurring over a few hours, but the effects can be long-standing and permanent. Delirium presents as three distinct types: hypoactive (reduced motor activity, lethargy, staring into space, drowsiness, withdrawal or catatonic state); hyperactive (increased motor activity, disorientation, hallucinations, delusions, restlessness, agitation, aggression, disinhibition, rambling speech, fear, hyper-alertness or paranoia); and mixed (alternating between hypoactive and hyperactive delirium) (Clinical Epidemiology and Health Service Evaluation Unit, 2006). Often, the symptoms of delirium are ignored or misunderstood by healthcare staff, which results in large scale under-recognition or misdiagnosis of delirium among older people (Inouye et al., 1990, 2014). Delirium is commonly ignored among older people when the symptoms are misattributed as an expected outcome of a chronic physical health problem, dementia, an exacerbation of dementia, or depression.
One reason why this under-recognition or misdiagnosis is unacceptable is that with effective management delirium among older people can be quickly reversed. Delirium among older people is most commonly caused by acute treatable problems, including an infection, polypharmacy, constipation, dehydration, malnutrition, anaemia, sleep deprivation, new or over-stimulating environments (bright lights, and/or noisiness) or a postoperative complication (Australian and New Zealand Society for Geriatric Medicine (ANZSGM), 2012). The physiological homeostasis of older people is more vulnerable than that of younger adults, and what would be a minor ‘injury’ in younger-age adults can result in delirium for older people.
The costs of delirium are to (a) individuals who experience short-term, long-term and permanent health problems, including increased morbidity such as falls, recurrent delirium and dementia, re-location into a nursing home and mortality; (b) healthcare providers with greater use of healthcare services, such as accessing general practitioners, registered nurses and physiotherapists, extended lengths of stay in hospitals and repeat admissions to hospitals; (c) family carers taking time off work to care for individuals living with delirium (and the associated morbidities) and experiencing health problems associated with caring for an older member of the family; and (d) the community with lost work days for family carers.
It is particularly important to address the cost of delirium because our growing ageing population will result in increases in the incidence and prevalence of delirium. Developing resources which provide guidance to implement evidence-based delirium care for healthcare staff in the prevention, recognition, diagnosis, treatment and management of delirium has the potential to reduce the impact and costs of delirium (Burns et al., 2004). When evidence-based delirium care practices are neglected the impact and costs associated with delirium escalate (National Institute for Health and Clinical Excellence (NICE), 2010; Siddiqi et al., 2016).
Plentiful research about evidence-based delirium care exists and a range of tools provide registered practitioners from the multidisciplinary healthcare team (in the main, registered nurses, medical doctors and occupational therapists) with guidance about how to prevent, recognise, diagnose and manage delirium effectively (MacLullich et al., 2014; Marcantonio et al., 2014). However, the continuing high incidence rate of delirium and its under-recognition demonstrate that the evidence is not consistently implemented and the tools are ineffective in promoting the implementation of best-practice delirium care (Inouye et al., 1990, 2014; NICE, 2010; Poole and McMahon, 2005; Siddiqi et al., 2016; Thomas et al., 2012; Traynor et al., 2015).
In Australia, the issue of how to effectively address the need to implement evidence-based delirium care was systematically addressed in the clinical practice guidelines for the management of delirium in older people (Clinical Epidemiology and Health Service Evaluation Unit, 2006). These guidelines provided an overview of evidence-based approaches to delirium care, including a summary of risk factors for delirium; guidance on using validated and reliable delirium screening tools; how to adjust the hospital environment to prevent or reduce the effects of delirium; the role of the family carer in ameliorating the effects of delirium; and an information brochure about the signs and symptoms of delirium for older people and family carers.
Initially, after the guidelines (Clinical Epidemiology and Health Service Evaluation Unit, 2006) were published, policy makers, service providers and clinical leaders in Australia were optimistic about the document having a positive outcome for delirium care. Later, there was disillusionment. Anecdotal reports stated that the guidelines sat unread on bookshelves or, worse still, unopened in boxes in clinical settings. The guidelines were considered inaccessible by registered practitioners because its 121-page length made it too overwhelming for clinicians. The Australian Commonwealth Government addressed the lack of use of the guidelines and commissioned the development of a supplementary delirium care pathways (DCPs) document. Importantly, the tender to develop the pathways required that the published resource include three patient journeys of delirium care across community, acute care and nursing home settings, a poster summarising the pathways, and content that could be expeditiously read by registered practitioners using the pathways to guide their clinical practice.
Objectives
The overall aim of the project was to develop a pathways document that was useable and relevant for registered practitioners for use across all care settings: (a) community, (b) acute and (c) nursing home. In particular, the pathways needed to address the problem that clinical guidelines are often lengthy and remain inaccessible to registered practitioners who need timely answers about ‘how to’ deliver evidence-based care. The authors, commissioned by the Australian Commonwealth Government to develop the pathways, were determined that the new document would be concise and easily readable by registered practitioners who required immediate guidance on how to implement evidence-based delirium care for older people and their family carers in community, acute and nursing home care settings.
Methods and Findings
This project was commissioned by the Australian Commonwealth Government and undertaken through a collaboration between the New South Wales (NSW) Ministry of Health, Australia, and the host university (The University of Wollongong) that undertook the research. An inductive approach to developing the new pathways was adopted and consisted of qualitative methods to develop the draft 1 and draft 2 pathways and pilot trial draft 3 pathways before it was finalised and published by the Australian Commonwealth Government. Approval to undertake the project was provided by the host university and local health district joint ethics committee. The project was undertaken across NSW, which consists of metropolitan, regional and rural locations. NSW is 800,642 km2 with a population of 7.5 million (including Sydney). In NSW there are 410 hospitals (225 public and 185 private; Australian Institute of Health and Welfare (AIHW), 2014) and over 890 nursing homes (DPS Publishing, n.d.).
Central to the success of this project was the role of a collaborative project management group represented by a range of stakeholders: an academic specialising in aged and dementia care research and education from the host university, a senior occupational therapist seconded from her role as an aged-care clinician working in the emergency department of the local health district, and a colleague with responsibility for aged-care policy development from NSW Ministry of Health. The project management group met every 4–6 weeks. In addition, an advisory group was convened to inform the project outcomes and ensure that the content and structure of the pathways reflected the views of a wide range of stakeholders from across care settings. Membership of the advisory group included Ministry of Health representatives, clinical nurse consultants, a general practitioner and a family carer. The members were nominated by the project management group. All professional members of the advisory group had a reputation state-wide and nationally within NSW and Australia, respectively, as experts in developing and delivering innovative care for older people. The family carer was nominated by a member of the project management group, who met the family carer when providing care for her mother who lived in a nursing home and was admitted to hospital for treatment of an episode of delirium.
The advisory group undertook the following activities: reviewed previously published pathways and related documents which informed the content and structure of the new pathways; helped with recruitment of sites and registered practitioners to participate in the development of the draft 1 and draft 2 pathways and pilot trial draft 3 pathways before it was published; were forwarded draft versions of the pathways in advance of each advisory group meeting and provided feedback about the content and structure of draft versions of the pathways; and worked with the project management group to finalise the content and structure, including specific wording, for the final version of the pathways published by the Australian Commonwealth Government.
The project was commissioned by the Australian Commonwealth Government and therefore the final content and structure was approved by the Health Care of Older Australians Standing Committee (HCOASC). This final stage with the Australian Commonwealth Government was open and transparent and the project management group was able to ensure the views and opinions of the advisory group and the evidence generated during empirical stages of the research were authentically represented in the final version of the pathways. Immediately prior to publication, no contentious issues arose regarding the structure or content of the pathways. This was because the content and structure of the pathways were inductively derived from a rigorous research process informed by evidence-based practice and feedback loops with nominated experts in delirium care through the advisory group.
The empirical research undertaken during this project to inform the content and structure of the pathways was undertaken in four stages.
Stage 1
Stage 1 consisted of accessing and reviewing existing best-practice delirium care resources, including pathway documents. A literature search of Cumulative Index to Nursing and Allied Health (CINAHL), Web of Science, Cochrane and Medline was undertaken in order to identify published delirium care resources. In total, 112 articles were retrieved and reviewed. In addition, Google was searched to locate unpublished delirium care resources. Emails were also sent, nationally and internationally, to colleagues requesting examples of delirium resources being used in practice, including the HCOASC, NSW Health Clinical Nurse Consultant Dementia Network, NSW/Australian Capital Territory (ACT) Dementia Training and Study Centre, Australian Association of Gerontology, Geriatric Society of America and British Society of Gerontology. In total, 30 email responses were received containing information about delirium resources, from Australia, England and Ireland. The resources located included clinical guidelines, clinical pathways, care plans and standardised operating procedures all related to delirium care of the older person.
All resources located from the database search, retrieved from the Google search and received via email were critically reviewed by the advisory group. The following criteria were applied when reviewing the resources reviewed:
Does the format of the resource make it easy to navigate? Does the resource reflect evidence-based best-practice delirium care? Does the resource include specific detail to enable the practitioner to be guided to deliver evidence-based best-practice delirium care? Was the resource short and concise?
At the end of this review process, five pathways were identified by the advisory group as useful for informing the content and structure of new pathways. These documents included the clinical practice guidelines for the management of delirium in older people (Clinical Epidemiology and Health Service Evaluation Unit, 2006), copies of three unpublished delirium resources forwarded to the project management group via email, and Poole's algorithm (Poole, 2000; Poole and McMahon, 2005). An already published stroke pathway document, from the same portfolio of work as the pathways project commissioned by the Australian Commonwealth Government (National Stroke Foundation, 2006), was also reviewed. However, when this document was reviewed, the advisory group considered it too lengthy and wanted the pathways to be shorter and more concise to ensure it was usable by the target registered practitioners who were the intended audience of the new pathways. The advisory group also identified the clinical practice guidelines for the management of delirium in older people (Clinical Epidemiology and Health Service Evaluation Unit, 2006) as an important and useful document which needed to have specific pages referred to in the pathways. Integrating the content from specific pages in the guidelines document (Clinical Epidemiology and Health Service Evaluation Unit, 2006) into the final pathways would ensure the goal of the pathways being a supplementary resource for the guidelines document would be achieved. When the advisory group reviewed the stroke clinical pathways document, which was promoted as a supplementary document to the stroke guidelines, they found that it simply repeated the lengthy and comprehensive content of the guideline document. The advisory group did not consider the stroke clinical pathways document to meet the aim of being a document which was more accessible to registered practitioners than the stroke guidelines document.
Stage 2
Stage 2 consisted of focus groups and interviews with registered practitioners managing, developing and delivering healthcare services to older people with delirium and family carers. Focus groups and one-to-one interviews were conducted to provide empirical evidence about what content and structure practitioners wanted from pathways. Stage 2 of the project aimed to ensure that the pathways would be valid, usable and relevant for registered practitioners (Holloway and Wheeler, 2009). Focus groups were adopted to generate evidence from participants working with older people who experience delirium because this method generates discussions not usually possible from one-to-one interviews on their own. The group discussion within a focus group brings new ideas and opportunities for elaboration not possible within a one-to-one interview. Focus groups can also create a consensus view, which was useful when developing the pathways for use in clinical settings. The one-to-one interviews with managers and policy makers specialising in aged care were chosen for a pragmatic reason because gathering these senior colleagues together in one place was not possible.
Stage 2 care setting and job role of participants.
The project manager undertook all focus groups and one-to-one interviews. Where possible, the project manager travelled to the workplace of the participants to enable participation from as far across the local region as possible. To enable participation more widely across NSW state, including rural locations, focus groups were also undertaken by telephone. All focus groups and one-to-one interviews were digitally recorded (audio) and data were transcribed verbatim. Data were de-identified, using codes, to ensure participants remained anonymous. Maintaining anonymity during this project was important as some participants were from a small group of known specialists and could be easily identified by reporting their job title. No incentives were provided to participants of this project.
Summary of content analysis findings from focus group and one-to-one interview data by theme.
FG: focus groups; I: interviews.
The majority of comments made about existing documents reviewed during the focus groups and one-to-one interviews were related to the importance of the layout, colour and clarity of the new pathways. The findings from the focus groups and one-to-one interviews were used by the project management group to create the draft 1 pathways.
Extract from guidelines document included in the draft 2 DCPs document.
DCPs: delirium care pathways.
Stage 3
Stage 3 was a pilot trial of the draft 2 pathways. All focus group participants volunteered to participate in a pilot trial of the draft 2 pathways. Therefore registered practitioners from all care settings (community, acute care and nursing homes) and locations within NSW, Australia (metropolitan, regional and remote) were represented in pilot trial stage 3 of the project. A total of 15 sites participated in the pilot trial of the draft 2 pathways with older people experiencing delirium.
The draft 2 pathways was distributed for use by all participants who participated in the focus groups and all agreed to participate in the pilot trial. Each participating site was provided with a copy of a ‘practitioner feedback form’ developed by the project management group to record the outcomes from the pilot trail of the draft 2 pathways. The form consisted of a range of questions and items: demographic details about the older person being pilot trialled using the draft 2 pathways and qualitative questions requesting that registered practitioners record comments about the draft 2 pathways, specifically its content and structure, implementation issues and ideas for improving its use in clinical settings. The responses were analysed using a content analysis technique (Silverman, 2006).
Clinical settings of DCPs document pilot trial sites.
All of the registered practitioners who participated completed the ‘practitioner feedback form’ when they pilot trialled the draft 2 pathways with older people experiencing delirium. They all provided comments as requested and it was found that the content and format of the draft 2 pathways was useful (89%, n = 11) and relevant (89%, n = 11) for providing guidance in implementing best-practice delirium care to older people. The majority of participants (89%, n = 11) stated that they would recommend the use of the draft 2 pathways to other colleagues.
A range of comments and requests for amendments to the draft 2 pathways was made by the participants in the pilot trial stage 3 of the project. The comments made were mainly focused on the structure and wording of the draft 2 pathways. Overall, all participants reported positive feedback on the draft 2 pathways and comments were focused on specific wording in each of the patient journeys created within the draft 2 pathways more specifically to explain best-practice delirium care in community, acute care and nursing home settings. The inclusion of an advance care plan/living will to record the wishes of individuals who can no longer verbally articulate their wishes, specifically for older people living in nursing homes, was requested. Participants also raised the issue of consent for older people, again specifically those living in nursing homes, and how registered practitioners can gain consent from an older person experiencing delirium for treatment to be commenced, including hospital admission. Participants pointed out that the legibility of some of the figures in the draft 2 pathways made it difficult to read and the printing needed to be improved for the final version of the document. All comments and requests for amendments provided during the pilot trial of the draft 2 pathways were addressed and incorporated into the draft 3 pathways when it was created for review by the advisory group.
The participants who pilot trialled the draft 2 pathways were satisfied that it would be a useful and relevant document to guide their implementation of best-practice delirium care. An extract of data from a participant who pilot trialled the draft 2 pathways in a nursing home illustrated this positive outcome from the pilot trial stage 3 of the project: That's exactly what we do [NH staff]. Do you want any other points added [NB]? No [NH staff]. (Focus Group Participant 13/09)
Stage 4
The last stage of the project was approving the final version of the new DCPs for publication by the Australian Commonwealth Government. The project management group and advisory group worked together during this stage to finalise the document. During this final stage of the project, only one issue was debated between the project management group and the advisory group. There was debate about how to ensure the pathways document was evidence based and relevant to all jurisdictions in Australia, that is, could take account of different service delivery models in different states and territories across Australia. The project management group negotiated with the advisory group and a decision was made not to (a) name a specific delirium screening tool in the pathways or (b) list examples of referral services for community or nursing home care settings. This specific wording was not included to ensure the pathways was applicable and relevant across different organisations who chose different evidence-based delirium screening tools and had specific referral pathways for delirium care in community and nursing home settings.
The final published version of Delirium Care Pathways consisted of 27 pages (Department of Health, 2011). The document started with 14 pages from the guideline document (Clinical Epidemiology and Health Service Evaluation Unit, 2006: pp. 3–17) (see Table 3) to ensure practitioners using the pathways had immediate and easy access to essential best practice resources. The main and most important part of the new pathways was the three patient journeys created to enable registered practitioners working in community and acute care and nursing home settings to implement best-practice delirium care (pp. 19–21). At the end of the document there was a glossary of terms (pp. 26–27). Finally, posters were produced for service managers to print out and display in clinical settings to promote the use of the DCPs.
Copy of the poster produced for display in clinical settings to promote the use of the DCPs document.
The patient journeys explained best-practice patient flow and the clinical work to be undertaken by registered practitioners. The patient journey in each setting commenced with the first interaction a registered practitioner has with an older person at risk of developing delirium or with a suspected delirium, and explains best-practice delirium care. The journey incorporates the discharge processes required for that person and includes essential care for family members. Importantly, each patient journey included details about best-practice communication at specific points in the patient journey in each care setting, with the older person, family carer and multidisciplinary healthcare team members, to ensure a whole-team approach to delirium care is adopted (Figure 1). Finally, a set of posters summarising the three patient journeys (community, acute and nursing homes) was created to enable practitioners to easily print out large versions of the DCPs in their clinical setting as one way to promote adoption of the pathways.
The final stage of publication was the creation of a webpage within the Australian Commonwealth Government Department of Health webpages onto which the DCPs and posters were uploaded (Department of Health, 2011). In addition, the host university's Aged and Dementia Health Education and Research (ADHERe) web page has a link to the Department of Health webpage promoting the DCPs and the posters (University of Wollongong, 2015).
Discussion
The iterative and inductive process adopted to develop these new DCPs reflected an emphasis on the importance of stakeholder engagement to develop this resource by the Australian Commonwealth Government who commissioned the project. The views of registered practitioners from all care settings (community, acute and nursing homes) and across locations (metropolitan, regional and rural) were gathered to develop the content and structure of the new pathways. This ensured that the content and structure of the document reflected the needs of the target users of the new pathways and will increase the likelihood of its usability and relevance for registered practitioners working with older people experiencing delirium.
Since the Australian Commonwealth Government published its DCPs, a range of projects and initiatives have been implemented within Australia, state-wide and nationally, and internationally by the authors and other colleagues. This has included a documentary medical record audit, which showed that in a local health district delirium was only documented in 2% of medical records reviewed, despite the retrospective audit indicating that the actual rate of delirium was 14% (Traynor et al., 2015). The DCPs were complemented with a 2014 document: ‘A better way to care: Safe and high-quality care for patients with cognitive impairment (dementia and delirium) in hospital’ (Australian Commission on Safety and Quality in Healthcare, 2014). A state-wide initiative in NSW, Australia, is underway: ‘Care of Confused Hospitalised Older Persons’ (Agency for Clinical Innovation (ACI), 2016) and has been implemented in over 20 local health districts. This initiative includes practice change implementation projects, a website resource for replicating education initiatives and an annual conference to disseminate the findings of these activities (ACI, 2016). This project is similar to the hospital elder life program, which was implemented in the USA and UK (Hospital Elder Life Program, 2016; Yue et al., 2014). Finally, the work undertaken by the authors for this project resulted in a range of projects to improve delirium care (See Box 1 for examples). The outcomes from these projects can be viewed at the host university website ADHERe:
Box 1 Examples of projects to improve delirium care
Completed:
Delirium care flip chart resource for registered practitioners (2013); ^ Delirium care online resource for registered practitioners and support care workers (2015); ^ Master of Philosophy thesis ‘Recognition of delirium by registered nurses’ (2015); ^ Objective structured clinical examination delirium care project (2016); and ^ Medical record audit of anaesthetic procedures for older people undergoing surgical procedures to identify factors causing delirium (2015). Ongoing:
Online survey of anaesthetists' knowledge, clinical practice and attitudes towards postoperative delirium among older people (2016); and ^ PhD study ‘The lived experience of older people experiencing delirium’ (2019).
Conclusions
The overall aims of this project were to develop a new DCPs and provide registered practitioners with a guide to deliver best-practice delirium care across all care settings (community, acute care and nursing homes) and locations within Australia (metropolitan, regional and rural). The published DCPs consisted of extracts from a guidelines document.The published DCPs combined easy-to-view extracts of essential information from a guidelines document (Clinical Epidemiology and Health Service Evaluation Unit, 2006) with three patient journeys, a glossary, poster print-outs, and a webpage resource. The webpage gave free-to-view access to the DCPs' stakeholder consultation (with registered practitioners from across care settings and locations in NSW, Australia), the piloting of draft versions of the pathways and their review by government-nominated experts in delirium care (clinicians, managers, policy makers, researchers and consumer representatives). This process ensured the content and structure of this document was usable and relevant to the target audience who would use the new pathways in clinical practice. What was unique about the new pathways was its conciseness add, after conciseness, the production of three patient journeys explaining best-practice delirium care across care settings and the posters to promote the use of the pathways. Since publication, the outcomes of this project have influenced national and state-wide initiatives in Australia and produced an international study on postoperative delirium among older people.
Key points for policy, practice and/or research
The delirium care pathways document was developed to provide practitioners with an accessible guide on preventing, recognising and treating delirium. The methodology ensured that the tool reflected the needs of practitioners across care settings. The publication of Delirium Care Pathways created momentum, which saw the initiation of other projects targeting delirium at both state and national levels.
Footnotes
Acknowledgements
The authors would like to thank Jennifer Kempster, Barbara Anderson and the members of the advisory group for their contributions to this project. We would also like to acknowledge the practitioners whose participation in the focus groups, expert interviews and trial of the DCPs was invaluable. Their feedback and advice provided important direction in modifying the content and structure of the documentation.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by NSW Health on behalf of the Health Care of Older Australians Standing Committee.
