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Emergency department use and responsiveness to the palliative care needs of patients with dementia at the end of life: A scoping review

Published online by Cambridge University Press:  27 January 2025

Sara Vieira Silva ,
Paulo Conceição ,
Bárbara Antunes Open the ORCID record for Bárbara Antunes [Opens in a new window]  and
Carla Teixeira
Sara Vieira Silva*
Affiliation:
Palliative Care Service, Unidade Local de Saúde de Santo António, Porto, Portugal
Paulo Conceição
Affiliation:
Internal Medicine Service, Unidade Local de Saúde de Santo António, Porto, Portugal
Bárbara Antunes
Affiliation:
Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK
Carla Teixeira
Affiliation:
Unidade Local de Saúde de Santo António, ICBAS Universidade do Porto, Porto, Portugal
*
Corresponding author: Sara Vieira Silva; Email: nevessp@gmail.com
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Abstract

Objectives

More than 50% of patients with dementia visit the emergency department (ED) each year. Patients with dementia experience frequently unrelieved symptoms that can benefit from palliative care. Response to palliative care needs in the ED can be quite challenging and access to palliative care is generally scarce. The aim of this scoping review is to assess ED use and responsiveness to palliative care needs of patients with dementia in their last year of life.

Methods

A scoping literature review following the Joanna Briggs Institute methodology. Electronic search of the literature was undertaken in Medline (PubMed), Web of Science, Scopus, Scielo, and APA PsycInfo, last updated on 19 February 2024.

Results

Twenty-four studies were identified and confirmed that patients with dementia frequently resort to the ED near the end of life, frequently more than once in their last year of life. Eight studies directly addressed palliative care needs, suggesting significant rates of palliative care needs among patients with dementia and in comparison, to other oncological or non-oncological conditions. Infections and neuropsychiatric symptoms were the main reasons of admission to the ED. Access to palliative care was confirmed to be low.

Significance of results

This scoping review indicates that patients with dementia frequently resource to the ED in their last year of life with unmet palliative care needs. Although scarce access to palliative care and the existence of important barriers in the ED, palliative care intervention in this setting can be seen as an opportunity to attend palliative care needs and referral to palliative care services.

Keywords

Dementiaend-of-life careemergency medical servicespalliative carepalliative care needs

Information

Type
Review Article
Information
Palliative & Supportive Care , Volume 23 , 2025 , e51
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Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2025. Published by Cambridge University Press.

Introduction

Emergency departments (EDs) are generally designed to respond to acute and life-threatening conditions, so visits to the ED by people who are approaching end of life frequently can be distressing for patients, families and challenging for staff (Antunes Reference Antunes2020; Briggs et al. Reference Briggs, Coughlan and Collins2013). Up to more than 50% of patients with dementia visit the ED each year (Hunt et al. Reference Hunt, Coombs and Stephens2018a) and as the population over 65 years old continues to grow, estimates suggest that from 57.4 million cases worldwide in 2019 this number will increase up to 152.8 million cases in 2050 (Nichols et al. Reference Nichols, Steinmetz and Vollset2022) and consequently increase ED use. Patients with dementia experience frequently unrelieved pain (Reynolds et al. Reference Reynolds, Hanson and DeVellis2008) and other significant needs (Black et al. Reference Black, Finucane and Baker2006; Hendriks et al. Reference Hendriks, Smalbrugge and Hertogh2014; Kverno et al. Reference Kverno, Rabins and Blass2008; Shega et al. Reference Shega, Hougham and Stocking2006) that can benefit from palliative care interventions. A 2021 Cochrane review (Walsh et al. Reference Walsh, Murphy and Devane2021) showed that advance care planning interventions for people with advanced dementia increased the documentation of advance directives and the number of discussions regarding goals of care with family decision-makers and may increase concordance with goals of care. Although not with the same grade of evidence, previous studies have identified other potential benefits of palliative care such as improvement of symptom burden, prevention of under or overtreatment, and enhance caregiver quality of life (Mitchell et al. Reference Mitchell, Teno and Kiely2009; van Soest-poortvliet et al. Reference van Soest-poortvliet, van der Steen and de Vet2015). Also, community-based palliative care has been associated with a reduction of ED visits (Godard-Sebillotte et al. Reference Godard-Sebillotte, Le Berre and Schuster2019; Williamson et al. Reference Williamson, Evans and Cripps2021), resulting in lower health-care costs and greater satisfaction with care among patients and families.

In general, at the end of life, several studies have shown poor quality of care for patients with dementia, including low levels of symptom control (Davies et al. Reference Davies, Maio and van Riet Paap2014; Martinsson et al. Reference Martinsson, Lundström and Sundelöf2018). The ED reality includes rapid decision-making, aggressive disease-modifying therapy (Lafond et al. Reference Lafond, Chalayer and Roussier2016), long waiting times, lack of communication (Smith et al. Reference Smith, Schonberg and Fisher2010), bright lights, and constant noise, all of which can constraint the care provided, specially to vulnerable populations.

In a recent systematic review, Williamson et al. (Reference Williamson, Evans and Cripps2021) identified significant factors that are associated with ED attendance to patients with dementia at the end of life, namely, number of comorbidities, neuropsychiatric symptoms, previous hospital transfers, and rural living. These were positively associated, while higher socioeconomic status, being unmarried and living in a care home were negatively associated, among other factors that were also identified. Although these factors might constitute relevant criteria to help identify patients at risk of ED attendance, there is a lack of knowledge about ED assistance to patients with dementia with palliative care needs at the end of life. This scoping review aimed to assess ED use and responsiveness to palliative care needs of these patients in their last year of life, focusing mainly on ED resource, the opportunities, and barriers to palliative care.

Methods

This scoping review follows the Joanna Briggs Institute methodology recommendations for scoping reviews (Peters Reference Peters, Christina and McInerney2015) and the Preferred Reporting Items for Systematic Reviews and Meta-analysis Protocol (PRISMA-P) for Scoping Reviews protocol (Tricco et al. Reference Tricco, Lillie and Zarin2018). The final protocol is available from the corresponding author upon request. The PRISMA for Scoping Reviews checklist is attached in Appendix 1.

Selection criteria

Studies addressing palliative care needs of patients with dementia who attended the ED were considered. To be eligible, studies had to include patients with dementia at the end of life, defined as been presumably in the last 12 months of life (Fisher et al. Reference Fisher, Seow and Cohen2015). All types of dementia were considered. Intellectual disability was not considered. Studies did not need to present a control group. Peer-reviewed studies – either quantitative, qualitative, or mixed-methods – were eligible. Editorials, letters to the editor, and case studies were ineligible. Only studies written in English, Portuguese, or Spanish were included.

Only studies authorized by an ethics committee, respecting the principles of Helsinki Declaration, were considered.

Search strategy

The search strategy was defined using PRISMA-P (Tricco et al. Reference Tricco, Lillie and Zarin2018) which was revised by the research team. Studies were retrieved from Medline (PubMed), Web of Science, Scopus, Scielo, and APA PsycInfo using keywords and controlled vocabulary representing the terms “Palliative Care needs,” “Patients with dementia,” and “ED,” with adjustment to the different databases (Table 1). As an example, detailed search strategy for Medline is available in Supplementary Table S1. Gray literature was considered and consisted of searching Google Scholar and abstracts from health conferences. Hand search was conducted based on bibliographies from previous reviews. The search was last updated on 19 February 2024, and final search results were exported to EndNote, where duplicates were removed.

Table 1.

Search terms used for scoping literature review

Screening and data extraction

Two independent reviewers (S.S. and P.C.) performed a preliminary screening of titles and abstracts. Eligible articles were identified, and full-text reading was performed by the same reviewers who further excluded articles if they did not meet the inclusion criteria. Discrepancies were resolved by discussion and consensus.

According to Joanna Briggs Institute methodology recommendations for scoping reviews, data were collected, collated, and summarized (Peters Reference Peters, Christina and McInerney2015). A data extraction form was developed by the research team, available in Appendix 2, and included main characteristics of the studies (identification of first author, date of publication, country, objective, design, population, sample size, recruitment, date of data collection, interventions, comparators, outcomes, and statistical analysis), the prevalence of patients with dementia at the end of life who presented palliative care needs, the reasons for resorting to the ED, the benefits, barriers, and lack of responsiveness to these needs. The 2 independent reviewers performed the data extraction with subsequent joint discussion and validation of the collected data by a third independent reviewer.

Analysis, synthesis, and reporting

A content analysis of the articles was conducted following the 7-step approach (Faria-Schützer et al. Reference Faria-Schützer, Surita and Alves2021): 1. Editing material, 2. Free-floating readings, 3. Construction of the units of analysis, 4. Identification of core of meanings, 5. Consolidation of categories, 6. Discussion of topics, and 7. Validity. Content is presented in tables with summarized items and with a complementary narrative format. Critical appraisal of the included studies was assessed according to Gough (Reference Gough2007) Weight of Evidence (WoE) (Gough Reference Gough2007), a tool that measures overall quality as low, medium, or high.

Results

From 1441 initial records, 78 papers were screened for eligibility and 24 were included in the full review (Fig. 1).

Figure 1.

PRISMA flow-diagram of selection of source of evidence.

An overview of the characteristics of the 24 included studies is provided in Table 2. Only 2 studies took place in developing countries (Amado-Tineo et al. Reference Amado-Tineo, Vasquez Alva and Huari Pastrana2020a, Reference Amado-Tineo, Vásquez-Alva and Huari-Pastrana2020b), the majority occurred in Europe (Afonso-Argilés et al. Reference Afonso-Argilés, Meyer and Stephan2020; Antunes et al. Reference Antunes, Gomes and Campos2021; De Matteis et al. Reference De Matteis, Burzo and Della Polla2022; Fürst et al. Reference Fürst, Strang and Hedman2022; Leniz et al. Reference Leniz, Higginson and Yi2021; Nordt et al. Reference Nordt, Ryan and Kelly2023; Reeves et al. Reference Reeves, Holland and Morbey2023; Sleeman et al. Reference Sleeman, Perera and Stewart2018; Willert et al. Reference Willert, Ploner and Kowski2021; Williamson et al. Reference Williamson, Leniz and Chukwusa2023) or North America (Glajchen et al. Reference Glajchen, Lawson and Homel2011; Hanson et al. Reference Hanson, Kistler and Lavin2019; Hill et al. Reference Hill, Schmucker and Siman2022; Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Kirkland et al. Reference Kirkland, Yang and Clua2022a; Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021; Lamantia et al. Reference Lamantia, Stump and Messina2016; Shah et al. Reference Shah, Jacobsohn and Jones2022). Quantitative methods were used for all of the studies (n = 24), 2 were randomized controlled trials (Hanson et al. Reference Hanson, Kistler and Lavin2019; Shah et al. Reference Shah, Jacobsohn and Jones2022); from the remaining, 6 of the observational were prospective studies (Afonso-Argilés et al. Reference Afonso-Argilés, Meyer and Stephan2020; Amado-Tineo et al. Reference Amado-Tineo, Vasquez Alva and Huari Pastrana2020a; Kirkland et al. Reference Kirkland, Yang and Clua2022a; Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021; Sleeman et al. Reference Sleeman, Perera and Stewart2018; Straeuli et al. Reference Straeuli, Jenkins and Droomer2022). Kirkland’s study (Kirkland et al. Reference Kirkland, Yang and Clua2022a) is a secondary analysis of the Kruhlak (Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021). Most of the studies were conducted in more than 1 centre (Afonso-Argilés et al. Reference Afonso-Argilés, Meyer and Stephan2020; Amado-Tineo et al. Reference Amado-Tineo, Vasquez Alva and Huari Pastrana2020a; Chen et al. Reference Chen, Ho and Huang2017; Fürst et al. Reference Fürst, Strang and Hedman2022; Hill et al. Reference Hill, Schmucker and Siman2022; Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Kirkland et al. Reference Kirkland, Yang and Clua2022a; Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021; Leniz et al. Reference Leniz, Higginson and Yi2021; Reeves et al. Reference Reeves, Holland and Morbey2023; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Shah et al. Reference Shah, Jacobsohn and Jones2022; Sleeman et al. Reference Sleeman, Perera and Stewart2018; Williamson et al. Reference Williamson, Leniz and Chukwusa2023; Wong et al Reference Wong, Gott and Frey2017). Sample sizes ranged from 7 patients with dementia (Amado-Tineo et al. Reference Amado-Tineo, Vasquez Alva and Huari Pastrana2020a; Willert et al. Reference Willert, Ploner and Kowski2021) to 918,341 patients (Reeves et al. Reference Reeves, Holland and Morbey2023).

Table 2.

Main characteristics of the 24 included studies

ED = emergency department; PC = palliative care; WOE D = Weight of Evidence D.15

aSecondary analysis of Kruhlak.27

Outcomes and measures

Identification of patient’s characteristics, including reason for admission, treatment received, and destination were the most frequent outcomes (Amado-Tineo et al. Reference Amado-Tineo, Vasquez Alva and Huari Pastrana2020a; Chen et al. Reference Chen, Ho and Huang2017; De Matteis et al. Reference De Matteis, Burzo and Della Polla2022; Glajchen et al. Reference Glajchen, Lawson and Homel2011; Hanson et al. Reference Hanson, Kistler and Lavin2019; Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021; Lamantia et al. Reference Lamantia, Stump and Messina2016; Leniz et al. Reference Leniz, Higginson and Yi2021; Nordt et al. Reference Nordt, Ryan and Kelly2023; Reeves et al. Reference Reeves, Holland and Morbey2023; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Straeuli et al. Reference Straeuli, Jenkins and Droomer2022; Willert et al. Reference Willert, Ploner and Kowski2021; Williamson et al. Reference Williamson, Leniz and Chukwusa2023; Wong et al Reference Wong, Gott and Frey2017), followed by frequency of ED visits (Afonso-Argilés et al. Reference Afonso-Argilés, Meyer and Stephan2020; Antunes et al. Reference Antunes, Gomes and Campos2021; Chen et al. Reference Chen, Ho and Huang2017; Fürst et al. Reference Fürst, Strang and Hedman2022; Hill et al. Reference Hill, Schmucker and Siman2022; Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Lamantia et al. Reference Lamantia, Stump and Messina2016; Leniz et al. Reference Leniz, Higginson and Yi2021; Nordt et al. Reference Nordt, Ryan and Kelly2023; Reeves et al. Reference Reeves, Holland and Morbey2023; Straeuli et al. Reference Straeuli, Jenkins and Droomer2022; Williamson et al. Reference Williamson, Leniz and Chukwusa2023). Factors associated with ED use were assessed in 5 studies (Afonso-Argilés et al. Reference Afonso-Argilés, Meyer and Stephan2020; Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Sleeman et al. Reference Sleeman, Perera and Stewart2018; Williamson et al. Reference Williamson, Leniz and Chukwusa2023).

Palliative care needs of patients attending the ED, including patients with dementia, were evaluated in 8 studies (Amado-Tineo et al. Reference Amado-Tineo, Vasquez Alva and Huari Pastrana2020a, Reference Amado-Tineo, Vásquez-Alva and Huari-Pastrana2020b; Glajchen et al. Reference Glajchen, Lawson and Homel2011; Kirkland et al. Reference Kirkland, Yang and Clua2022a; Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021; Leniz et al. Reference Leniz, Higginson and Yi2021; Straeuli et al. Reference Straeuli, Jenkins and Droomer2022; Wong et al Reference Wong, Gott and Frey2017), using different tools, namely GSF-PIG1 (Straeuli et al. Reference Straeuli, Jenkins and Droomer2022; Wong et al Reference Wong, Gott and Frey2017), P-cares (Kirkland et al. Reference Kirkland, Yang and Clua2022a; Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021), BriefPal (Glajchen et al. Reference Glajchen, Lawson and Homel2011), NECPAL (Amado-Tineo et al. Reference Amado-Tineo, Vasquez Alva and Huari Pastrana2020a), SPICT-ESTM (Amado-Tineo et al. Reference Amado-Tineo, Vásquez-Alva and Huari-Pastrana2020ba), and Palliative Care Quality and Outcomes Framework (Leniz et al. Reference Leniz, Higginson and Yi2021). Access to palliative care was evaluated in 7 studies (Amado-Tineo et al. Reference Amado-Tineo, Vasquez Alva and Huari Pastrana2020a; Fürst et al. Reference Fürst, Strang and Hedman2022; Kirkland et al. Reference Kirkland, Yang and Clua2022a; Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021; Leniz et al. Reference Leniz, Higginson and Yi2021; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Willert et al. Reference Willert, Ploner and Kowski2021).

The 3 clinical trials included evaluated the feasibility of BriefPal as a screening tool (Glajchen et al. Reference Glajchen, Lawson and Homel2011), the development of a best practice model for patients with dementia (Fürst et al. Reference Fürst, Strang and Hedman2022), and a care transition intervention (Shah et al. Reference Shah, Jacobsohn and Jones2022).

ED use and reasons for admission

Dementia represented 1 of the most frequent non-oncological primary diagnoses for patients admitted to the ED with palliative care needs (Glajchen et al. Reference Glajchen, Lawson and Homel2011; Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021; Nordt et al. Reference Nordt, Ryan and Kelly2023; Straeuli et al. Reference Straeuli, Jenkins and Droomer2022). Infections (Chen et al. Reference Chen, Ho and Huang2017; De Matteis et al. Reference De Matteis, Burzo and Della Polla2022; Hanson et al. Reference Hanson, Kistler and Lavin2019; Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Lamantia et al. Reference Lamantia, Stump and Messina2016; Williamson et al. Reference Williamson, Leniz and Chukwusa2023), mostly respiratory or urinary, and neuropsychiatric symptoms (De Matteis et al. Reference De Matteis, Burzo and Della Polla2022; Hanson et al. Reference Hanson, Kistler and Lavin2019) were the most prevalent reasons for admission.

Emergency use by patients with dementia were consistently high (Afonso-Argilés et al. Reference Afonso-Argilés, Meyer and Stephan2020; Antunes et al. Reference Antunes, Gomes and Campos2021; Chen et al. Reference Chen, Ho and Huang2017; Fürst et al. Reference Fürst, Strang and Hedman2022; Hill et al. Reference Hill, Schmucker and Siman2022; Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Lamantia et al. Reference Lamantia, Stump and Messina2016; Leniz et al. Reference Leniz, Higginson and Yi2021; Nordt et al. Reference Nordt, Ryan and Kelly2023; Reeves et al. Reference Reeves, Holland and Morbey2023; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Williamson et al. Reference Williamson, Leniz and Chukwusa2023), mostly at the end of life (Chen et al. Reference Chen, Ho and Huang2017; Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Leniz et al. Reference Leniz, Higginson and Yi2021; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Williamson et al. Reference Williamson, Leniz and Chukwusa2023) and often with more than 1 visit in the last year of life (Antunes et al. Reference Antunes, Gomes and Campos2021; Nordt et al. Reference Nordt, Ryan and Kelly2023; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Williamson et al. Reference Williamson, Leniz and Chukwusa2023). Analysis of factors associated with ED use suggested that being male (Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Sleeman et al. Reference Sleeman, Perera and Stewart2018), younger (Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015), and having depression (Sleeman et al. Reference Sleeman, Perera and Stewart2018), pain (Hunt et al. Reference Hunt, Ritchie and Cataldo2018b), polypharmacy, falls, weight loss, caregiver burden (Afonso-Argilés et al. Reference Afonso-Argilés, Meyer and Stephan2020), type of dementia (Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Williamson et al. Reference Williamson, Leniz and Chukwusa2023), and place of residency (Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Williamson et al. Reference Williamson, Leniz and Chukwusa2023) might be associated with increased ED use. In contrast, access to community palliative care was associated with reduced use of ED (Straeuli et al. Reference Straeuli, Jenkins and Droomer2022).

Palliative care needs and access to palliative care

Prevalence of palliative care needs of patients with dementia assisted at the ED ranged from 0.6% (Straeuli et al. Reference Straeuli, Jenkins and Droomer2022) to 7.9% (Glajchen et al. Reference Glajchen, Lawson and Homel2011). When comparing to patients with other comorbidities also assisted at the ED, prevalence of palliative care needs of patients with dementia was non-inferior to that of cancer patients (Kirkland et al. Reference Kirkland, Yang and Clua2022a). Considering total dementia patients attending the ED, palliative care needs ranged from 18.3% (Glajchen et al. Reference Glajchen, Lawson and Homel2011) to 33.6% (Leniz et al. Reference Leniz, Higginson and Yi2021). Access to palliative care was low in general (Amado-Tineo et al. Reference Amado-Tineo, Vasquez Alva and Huari Pastrana2020a; Kirkland et al. Reference Kirkland, Yang and Clua2022a; Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021; Leniz et al. Reference Leniz, Higginson and Yi2021; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Willert et al. Reference Willert, Ploner and Kowski2021), only 3 studies presented rates pertaining to patients with dementia, ranging from 6.0% (Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015) to 42% (Willert et al. Reference Willert, Ploner and Kowski2021). The latter study considered patients with dementia associated with cancer, inferior to the 76% of patients who only had cancer.

Studies included presented a WOE D quality score of medium (Afonso-Argilés et al. Reference Afonso-Argilés, Meyer and Stephan2020; Amado-Tineo et al. Reference Amado-Tineo, Vásquez-Alva and Huari-Pastrana2020b; Glajchen et al. Reference Glajchen, Lawson and Homel2011; Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021; Lamantia et al. Reference Lamantia, Stump and Messina2016; Leniz et al. Reference Leniz, Higginson and Yi2021; Nordt et al. Reference Nordt, Ryan and Kelly2023; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Sleeman et al. Reference Sleeman, Perera and Stewart2018; Straeuli et al. Reference Straeuli, Jenkins and Droomer2022; Willert et al. Reference Willert, Ploner and Kowski2021; Williamson et al. Reference Williamson, Leniz and Chukwusa2023) or high (Afonso-Argilés et al. Reference Afonso-Argilés, Meyer and Stephan2020; Amado-Tineo et al. Reference Amado-Tineo, Vasquez Alva and Huari Pastrana2020a; Antunes et al. Reference Antunes, Gomes and Campos2021; Chen et al. Reference Chen, Ho and Huang2017; De Matteis et al. Reference De Matteis, Burzo and Della Polla2022; Fürst et al. Reference Fürst, Strang and Hedman2022; Hanson et al. Reference Hanson, Kistler and Lavin2019; Hill et al. Reference Hill, Schmucker and Siman2022; Kirkland et al. Reference Kirkland, Yang and Clua2022a; Reeves et al. Reference Reeves, Holland and Morbey2023; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Shah et al. Reference Shah, Jacobsohn and Jones2022).

Discussion

To our knowledge, this is the first review directly addressing palliative care needs of patients with dementia at the ED at the end of life. Our findings reveal that the evidence is scarce, limited to 24 studies. Patients with dementia in the last year of life frequently resort to the ED, representing 1 of the main diagnosis of patients attending this service. Moreover, patients with dementia often seem to present to the ED near the end of life, frequently more than once in their last year of life. Only 8 studies directly addressed palliative care needs and a plethora of measurement tools were used, suggesting significant rates of palliative care needs among patients with dementia and in comparison, to other oncological or non-oncological conditions. Some of the main reasons of admission to the ED are infections and neuropsychiatric symptoms. Although access to community palliative care seems to reduce ED use, evidence to support this remains scarce.

Previous studies estimate that 32–35% of patients attending the ED present unmet palliative care needs (Kirkland et al. Reference Kirkland, Yang and Garrido Clua2022b), presenting a wide range in prevalence, from 0.6% (Straeuli et al. Reference Straeuli, Jenkins and Droomer2022) to 7.9% (Glajchen et al. Reference Glajchen, Lawson and Homel2011), and these needs are probably non-inferior to the ones present in cancer patients (Kirkland et al. Reference Kirkland, Yang and Clua2022a). These results are in accordance with studies describing similar levels of distressing symptoms and palliative care needs in patients with dementia and patients with cancer and other chronic diseases, outside the ED setting (Chaudhry et al. Reference Chaudhry, Murphy and Gahbauer2013; Eisenmann et al. Reference Eisenmann, Golla and Schmidt2020; Moens et al. Reference Moens, Higginson and Harding2014; Sampson et al. Reference Sampson, Candy and Davis2018).

ED use is usually considered a low-quality indicator of end-of-life care, including,patients with dementia, especially in the last 90 days of life (Gozalo et al. Reference Gozalo, Teno and Mitchell2011; Leniz et al. Reference Leniz, Higginson and Stewart2019). In fact, ED attendance of patients with dementia has been associated with an increased risk of delirium, falls, cognitive and functional decline, readmission, and death (Godard-Sebillotte et al. Reference Godard-Sebillotte, Le Berre and Schuster2019; Travers et al. Reference Travers, Byrne and Pachana2014; Volicer and Simard Reference Volicer and Simard2015). Evidence shows that significant avoidable ED use occurs (Lamba et al. Reference Lamba, Pound and Rella2012; Nuñez et al. Reference Nuñez, Hexdall and Aguirre-Jaime2006). This is in line with our scoping review, given that this population presented high rates of ED use (Afonso-Argilés et al. Reference Afonso-Argilés, Meyer and Stephan2020; Antunes et al. Reference Antunes, Gomes and Campos2021; Fürst et al. Reference Fürst, Strang and Hedman2022; Hill et al. Reference Hill, Schmucker and Siman2022; Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Lamantia et al. Reference Lamantia, Stump and Messina2016; Leniz et al. Reference Leniz, Higginson and Yi2021; Nordt et al. Reference Nordt, Ryan and Kelly2023; Reeves et al. Reference Reeves, Holland and Morbey2023; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Williamson et al. Reference Williamson, Leniz and Chukwusa2023), specially at the end of life (Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Leniz et al. Reference Leniz, Higginson and Yi2021; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Williamson et al. Reference Williamson, Leniz and Chukwusa2023) and frequently more than once in the last year of life (Antunes et al. Reference Antunes, Gomes and Campos2021; Nordt et al. Reference Nordt, Ryan and Kelly2023; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Williamson et al. Reference Williamson, Leniz and Chukwusa2023).

Frequent ED resource suggests frequent unmet needs, including palliative care needs. None of the studies included in this review specifically addressed which palliative care needs are more commonly present. Reasons to resorting to the ED may represent some of these needs and in the present review infections (De Matteis et al. Reference De Matteis, Burzo and Della Polla2022; Hanson et al. Reference Hanson, Kistler and Lavin2019; Hunt et al. Reference Hunt, Ritchie and Cataldo2018b; Lamantia et al. Reference Lamantia, Stump and Messina2016; Williamson et al. Reference Williamson, Leniz and Chukwusa2023) and dominated neuropsychiatric symptoms (De Matteis et al. Reference De Matteis, Burzo and Della Polla2022; Hanson et al. Reference Hanson, Kistler and Lavin2019). Other reasons of resorting to the ED have also been proposed (Vasquez et al. Reference Vasquez, Deland and Spears2019), such as reduced oral intake and inability to tolerate medication. Williamson et al. (Reference Williamson, Evans and Cripps2021) previously identified several individual, clinical, and environmental factors that can influence ED attendance by patients with dementia at the end of life, including palliative care that was associated with reduced ED use. In our study, depression (Sleeman et al. Reference Sleeman, Perera and Stewart2018), pain (Hunt et al. Reference Hunt, Ritchie and Cataldo2018b), polypharmacy, falls, weight loss, and caregiver burden (Afonso-Argilés et al. Reference Afonso-Argilés, Meyer and Stephan2020) were identified as factors that can be associated with ED use when addressing palliative care needs.

This scoping review confirms that palliative care needs of patients with dementia attending the ED are frequent and access to palliative care remains scarce (Amado-Tineo et al. Reference Amado-Tineo, Vasquez Alva and Huari Pastrana2020a; Fürst et al. Reference Fürst, Strang and Hedman2022; Kirkland et al. Reference Kirkland, Yang and Clua2022a; Kruhlak et al. Reference Kruhlak, Kirkland and Clua2021; Leniz et al. Reference Leniz, Higginson and Yi2021; Rosenwax et al. Reference Rosenwax, Spilsbury and Arendts2015; Willert et al. Reference Willert, Ploner and Kowski2021). Evidence shows that the main barriers contributing to the latter include time constrains, lack of privacy and other space limitations, staff with low confidence in palliative care skills, and difficulties in relationship building with patients and families. Barriers related to limited community service provision and to particular aspects of patients with dementia that complicate palliative care recognition such as cognitive changes, communication difficulties, and the pattern of slow incremental decline have also been identified (Jamieson et al. Reference Jamieson, Grealish and Brown2016; Jurgens et al. Reference Jurgens, Clissett and Gladman2012; Lillyman and Bruce Reference Lillyman and Bruce2016; Mataqi and Aslanpour Reference Mataqi and Aslanpour2020; Ryan et al. Reference Ryan, Gardiner and Bellamy2012; Verhoef et al. Reference Verhoef, de Nijs and Horeweg2020). Additionally, health-care professionals tend to underestimate the potential role of palliative care for life-limiting conditions other than cancer (Shearer et al. Reference Shearer, Rogers and Monterosso2014), and patients with life limiting conditions are frequently triaged as low priority patients (Hjermstad et al. Reference Hjermstad, Kolflaath and Løkken2013) at the ED, and can consume resources like over investigations and inappropriate treatment that fail to address their needs and goals of care (Lawson et al. Reference Lawson, Burge and McIntyre2008).

Considering that ED use by patients with dementia with palliative care needs is frequent, some authors have proposed to assume ED use as an opportunity to identify gaps in care, offer timely interventions, initiate end-of-life discussions, and refer to palliative care services (Elsayem et al. Reference Elsayem, Elzubeir and Brock2016; George et al. Reference George, Barrett and McPeake2015; Grudzen et al. Reference Grudzen, Richardson and Johnson2016, Reference Grudzen, Stone and Morrison2011; Ouchi et al. Reference Ouchi, Block and Schonberg2017, Reference Ouchi, Wu and Medairos2014). Lamba et al. (Reference Lamba, Nagurka and Zielinski2013) suggest training of emergency staff in palliative care principles encouraging them as primary providers to seek the multi-professional palliative care service as means to improve access to palliative care. Our results are in line with these views (Glajchen et al. Reference Glajchen, Lawson and Homel2011; Hanson et al. Reference Hanson, Kistler and Lavin2019; Shah et al. Reference Shah, Jacobsohn and Jones2022). The BriefPal project (Glajchen et al. Reference Glajchen, Lawson and Homel2011) showed feasibility of successful screening of palliative care needs and the value of staff education, reporting patient symptom reduction and improvement in referral to palliative care services. Hanson LC et al. (Reference Hanson, Kistler and Lavin2019) conducted a trial of best-practice model of specialty palliative care triggered by ED use, and results show that the intervention group presented more elements of palliative care needs addressed; more frequent assessment and treatment of physical, neuropsychiatric, and spiritual symptoms; and increased communication and decision-making concerning end-of-life issues. The Shah et al. (Reference Shah, Jacobsohn and Jones2022) trial reported that a care transition intervention can improve transition of patients with dementia, specially of those with depression, reducing ED revisits, and increase odds of obtaining follow-up.

Strengths and limitations

This scoping review complied with an established systematic method and examined the available evidence on experience and needs of a particularly frail subgroup of patients, in the challenging setting of ED. Our search included studies from a diverse range of countries and hence presents wide-ranging relevance. However, there are some limitations. Search was limited regarding number of databases, and no hand search of key journals was conducted, besides those based on references from previous reviews. We only considered English-, Portuguese-, and Spanish-language publications. The main focus was in studies addressing palliative care needs directly with specific tools but studies with indirect assessment of palliative care needs were also considered. Studies included in this review presented very diverse methodologies and frequently samples were not exclusively of dementia patients, limiting analysis of the results.

Conclusions

Current evidence indicates that patients with dementia frequently resource to the ED in their last year of life with unmet palliative care needs. Scarce access to palliative care seems to pose an even greater challenge to care for these patients in the ED setting. Results from palliative care intervention studies (Elsayem et al. Reference Elsayem, Elzubeir and Brock2016; George et al. Reference George, Barrett and McPeake2015; Glajchen et al. Reference Glajchen, Lawson and Homel2011; Grudzen et al. Reference Grudzen, Richardson and Johnson2016, Reference Grudzen, Stone and Morrison2011; Hanson et al. Reference Hanson, Kistler and Lavin2019; Lamba Reference Lamba2009; Ouchi et al. Reference Ouchi, Block and Schonberg2017, Reference Ouchi, Wu and Medairos2014; Shah et al. Reference Shah, Jacobsohn and Jones2022) at the ED are encouraging and suggest that ED can and probably should be seen as an opportunity to attend to palliative care needs and refer to palliative care services.

Future research regarding models of identification of palliative care needs and development of best practice approach along with palliative care principles at the ED might shed light in improving the response to palliative care needs of patients with dementia. Referral to palliative care services, advance discussion of goals of care and reinforcement of community palliative care services seems to be key to guarantee better access to palliative care.

Supplementary material

The supplementary material for this article can be found at https://doi.org/10.1017/S1478951524001627.

Data availability statement

Further information about the search strategies and other supplemental material are available from the corresponding author on reasonable request.

Author contributions

S.S., B.A., and C.T conceived and designed the study. S.S. and P.C. completed all the searches, conducted the initial screening and full manuscript reviews. S.S. and P.C. analyzed and interpreted the data. S.S. drafted the manuscript, and all authors have approved the submitted version.

Funding

The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: funding for this study was provided by Unidade Local de Saúde de Santo António and Faculty of Medicine of University of Porto as part of a larger research project. These funders did not have a role in the study design, collection, analysis or interpretation of the data nor in the writing of the manuscript.

Competing interests

The authors declare that they have no competing interests.

Ethical approval

This study was approved as part of a larger research project by ethics committee of Unidade Local de Saúde de Santo António.

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Table 1. Search terms used for scoping literature review

Figure 1

Figure 1. PRISMA flow-diagram of selection of source of evidence.

Figure 2

Table 2. Main characteristics of the 24 included studies

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