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This cross-sectional study examines whether prolonged emergency department (ED) boarding is associated with increased perceived racial discrimination and patient dissatisfaction.

This Medical News article discusses research that found Black individuals and women are less likely to survive after receiving cardiopulmonary resuscitation for out-of-hospital cardiac arrest than White people or men.

This cross-sectional study assesses emergency department (ED) admissions for hypertensive disorders of pregnancy and post partum between 2006 and 2020.

This Viewpoint presents an updated scientific approach applied to the foundational framework of the Haddon Matrix for injury prevention to reduce firearm injuries and deaths to children and youth.

This survey study evaluates a program for increasing bystander bleeding control skills, improving self-efficacy for bleeding control, and building trust between community participants and first responders in a Somali community in the US affected by firearm-related deaths.

• The Details Matter for Defibrillator Pad Placement and Cardiac Arrest Resuscitation JAMA Network Open Opinion September 9, 2024 Resuscitation Cardiology Rhythm Disorders Medical Devices and Equipment Full Text | pdf link PDF open access

This multicenter retrospective cohort study examines the comparative effectiveness of lactated Ringer solution vs normal saline for fluid resuscitation in inpatients with sickle cell disease and vaso-occlusive episodes.

This cohort study assesses the association between initial defibrillator pad placement position and out-of-hospital cardiac arrest among patients treated by emergency medical services in the United States.

This randomized clinical trial evaluates the effectiveness of error management training in cognitive learning of head computed tomography interpretation among emergency medicine residents.

This cohort study evaluates the association of rental housing deposits and health care use among Medicaid beneficiaries receiving social needs case management as part of a Medicaid 1115 waiver pilot program in California.

This Medical News article is an interview with emergency management and medical experts from Oregon and Washington who experienced the record-breaking heat wave in June of 2021.

This cohort study evaluates the association between sport-related concussion and plasma biomarkers in Canadian adolescents.

• Performance of Diagnostic Biomarkers for Traumatic Brain Injury Within the First Hour—Expanding Their Clinical Utility JAMA Network Open Opinion September 4, 2024 Neurology Neurosurgery Surgery Radiology Neuroimaging Full Text | pdf link PDF open access

This cohort study examines the performance of glial fibrillary acidic protein (GFAP), ubiquitin carboxy-terminal hydrolase L1 (UCH-L1), and microtubule-associated protein 2 (MAP-2) measured within 60 minutes of traumatic brain injury (TBI) in identifying patients with intracranial lesions on computed tomography, need for neurosurgical intervention, and clinically important early outcomes.

This cohort study quantifies the length of time to complete process steps in the initial care of patients with acute ischemic stroke and determines which process steps account for most disparities by sex, race and ethnicity, and age in door-in–door-out times for interhospital transfer.

This randomized clinical trial investigates if prehospital pulse-dose glucocorticoid treatment has a cardioprotective effect in patients with ST-segment elevation myocardial infarction (STEMI).

This secondary analysis examines whether there is an association of early vs delayed antihypertensive treatment with outcomes among Chinese patients with single subcortical infarction, stratified by the presence of parent artery disease stenosis.

• More Reasons Not to Lower High Blood Pressure Early After Ischemic Stroke JAMA Network Open Opinion August 30, 2024 Neurology Stroke Cerebrovascular Infarction Cerebrovascular Disease Hypertension Full Text | pdf link PDF open access

This cohort study investigates myocardial injury and the association between serum creatinine concentrations and high-sensitivity cardiac troponin T kinetics, as well as the clinical accuracy of high-sensitivity cardiac troponin T for myocardial infarction in patients with acute kidney injury.

This study assesses outcomes of patients with TBI transferred to the American College of Surgeons level I or level II trauma centers on a nationwide scale.

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• Open access
• Published: 11 August 2022

Patient-centered care in the emergency department: a systematic review and meta-ethnographic synthesis

• Anna Walsh 1 ,
• Elnaz Bodaghkhani 2 ,
• Holly Etchegary 1 ,
• Lindsay Alcock 3 ,
• Christopher Patey 4 ,
• Dorothy Senior 5 &
• Shabnam Asghari 1 , 6  

International Journal of Emergency Medicine volume  15 , Article number:  36 ( 2022 ) Cite this article

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Patient-centered care (PCC) is an emerging priority in many healthcare settings but lacks clarity in the emergency department (ED). It is of interest to know what PCC practices are most important to patients to better their experience. The objective of this study was to conduct a mixed-methods systematic review of PCC in the ED.

We used stakeholder and patient engagement to consult with clinicians, subject-matter experts, patient partners, and community organizations to determine patient needs. We examined all articles in the ED context with PCC as the intervention. Two independent reviewers screened 3136 articles and 13 were included. A meta-ethnographic analysis was conducted to determine common themes of PCC.

Themes included emotional support, communication, education, involvement of patient/family in information sharing and decision making, comfort of environment, respect and trust, continuity, and transition of care. Challenges in the ED reflected a lack of PCC. Moreover, implementation of PCC had many benefits including higher patient satisfaction with their care. Though there were commonalities of PCC components, there was no consistently used definition for PCC in the ED.

The findings of this review support the evidence that PCC is of high value to the ED setting and should be standardized in practice.

Patient-centered care (PCC) is a method of forming trusting relationships between patients and care providers. It is widely defined as a holistic approach to providing care that includes patient involvement, communication, access to services, well-trained staff, and an environment that meets patients’ psychosocial, physical, and cultural needs [ 1 ]. It has previously been explored in many fields of healthcare including, but not limited to nursing [ 2 ], cancer care [ 3 ], pediatrics [ 4 ], long-term care [ 5 ], mental health [ 6 ], primary care [ 7 ], and related areas such as social work [ 8 ]. PCC requires efforts on all levels including the patient, the provider, and the healthcare system [ 9 ] to ensure it is meaningfully practiced.

Effective PCC should help patients and physicians to communicate in a respectful way that both parties understand within an environment that is conducive to appropriate care processes. Previous research demonstrates that when there is dissonance between patients’ expectations and the services rendered, there are often components of patient-centeredness missing [ 10 , 11 , 12 ]. PCC and its many components can make a huge impact on patients’ experiences when performed properly.

PCC is an emerging priority in many healthcare settings, yet it has not been incorporated into ED practice in a standard way. Traditional ED quality improvement initiatives often focus on structures, processes, and outcomes—for example, how long a patient waits, the percentage of patients that leave without being seen by a physician, and the volume of patients during the intervention [ 13 , 14 ]. Although these variables should be considered to create a better ED that benefits the health system, the way in which patients perceive their experience is essential to acknowledge. The quality and personalization of services sought out by patients in the ED are critical, and it is highly important to ensure patients leave feeling satisfied with the care they receive. Despite the growing literature on interventions that can be used to make the ED more efficient [ 15 , 16 , 17 , 18 ], there are currently no systematic reviews on how EDs include PCC. Thus, it is of interest to know what is most important to patients to better their experience, and how PCC can encompass those elements.

The goal of this review is to examine PCC in the ED to better understand how EDs undertake this method. The objectives are to determine (1) what the components of PCC are in the ED and (2) what the challenges and benefits of PCC in the ED are, as perceived by staff and patients.

Methodology

This study follows the strategy of review outlined in the protocol available on PROSPERO, updated in November 2021 [ 19 ]. As stated in the protocol, our phenomenon of interest included PCC in the context of the ED, and our main outcomes of interest are components or methods of PCC, challenges and benefits to PCC for staff, and challenges and benefits to PCC for patients. Secondary outcomes of interest included any evidence on the impacts of PCC, e.g., ED wait times or length of stay, patient satisfaction, and patients leaving without being seen.

Patient and public involvement

To better understand current and previous experiences of patients in the ED, we undertook patient engagement initiatives [ 20 ]. By involving patient partners, the research in question becomes more patient-centered [ 21 ]. We discussed issues and needs with local advocacy groups to gain perspective from those with lived experience and included patient partners on the research team. Figure 1 depicts the process of patient involvement throughout the study from research question development to dissemination.

Pathway of patient and public involvement in the study

Search strategy

Search terms were identified and search strategies were developed by a medical librarian. The primary strategy (PubMed, MEDLINE) was peer-reviewed using PRESS and translated to search Embase (Elsevier), CINAHLPlus (EBSCO), PsycINFO (EBSCO), and Cochrane (Wiley) (Additional file 1 : Appendix A). The reference sections of relevant studies were also examined for any additional references. The original searches were completed on June 6, 2020, and rerun on December 2, 2020.

Study selection

The titles and abstracts of all articles identified by the database searches were examined by two independent reviewers after duplicates were removed. Inclusion and exclusion criteria can be found in the protocol [ 19 ]. Reviewers completed a calibration exercise with the first ten articles and reached agreement on inclusion criteria. All full texts were then reviewed. A third reviewer was invited to mitigate any dispute.

Quality appraisal

The quality of each study was assessed using the scoring system for mixed studies reviews [ 22 ]. Studies 75% and above were good quality, 50–74% were fair, and below 50% were low. All studies that met the criteria were included, despite the quality score.

Synthesis of results and analysis

Two approaches were used for data synthesis and integration. The Joanna Briggs Institute (JBI) convergence-integrated approach for mixed-methods studies [ 23 ] was used to “qualitize” quantitative studies into textual descriptions to allow integration with qualitative data. “Qualitized” findings from quantitative studies are assembled into categories with qualitative findings based on similarity of meaning. To best determine the categories once all data was “qualitized”, we used a meta-ethnographic approach. Meta-ethnographic synthesis is suitable for understanding conceptual or theoretical underpinnings of a particular phenomenon [ 24 ]. This approach was selected to help understand what the various components of PCC were and what common components were used across all included studies. It was also used to compile information regarding challenges and benefits of PCC and determine commonalities across the literature. For the purposes of this study, “concepts” are defined as information extracted from the studies that include either direct quotes from study participants or authors’ interpretations of their own results. “Key concepts” are the groupings of similarities and differences across concepts from the included studies after the studies are translated into one another, and “themes” are the third-order constructs that are re-interpretations of the concepts and key concepts determined by the reviewers of this study.

The concepts were separated based on the viewpoint, being staff or patient/family. To address each population, healthcare providers, and patients and families, two separate reciprocal translations were conducted. All concepts were compared to one another using a line of argument synthesis [ 24 ] to identify key concepts reflected in both populations that described PCC activities, challenges, and benefits. Theme interpretation was completed by one reviewer (AW), based on the independent data extractions from both reviewers. All themes were discussed during weekly meetings between members of the research team, including a PCC expert and clinician, patient engagement expert, and methodologist, to reduce bias and ensure consensus was reached. Finally, the synthesis is expressed through tables and narrative format [ 25 ].

Study characteristics

Three thousand eight hundred thirty-eight studies were imported for screening. 3136 total articles were screened in the title and abstract phase, 69 were assessed for eligibility in the full-text phase, and 14 studies were included in the data extraction phase. Reasons for exclusion were no patient-centered care ( n =48), setting of intervention outside of the ED ( n =7), and full-text article was not available ( n =1). One study was removed during the extraction phase because the focus of the article was social services rather than healthcare, despite being in the ED setting, leaving 13 articles for the final data extraction and quality appraisal (Fig. 2 ).

PRISMA diagram

Table 1 demonstrates all study characteristics. Countries of study included the USA ( n =4), Canada ( n =2), UK ( n =2), Sweden ( n =2), Australia ( n =2), and Taiwan ( n =1). All studies included patient and/or healthcare professional populations that had experience in the ED. Eleven studies included populations related to adult ED care and two studies included populations related to pediatric ED care. While most studies were directly related to the ED setting ( n =10), three studies investigated settings that were specialized units adjoined to or having direct impacts on EDs ( n =3). The quality scores varied. Six studies ( n =6) were considered good quality, six ( n =6) were fair, and one ( n =1) low.

Defining components of patient-centered care

Descriptions and definitions of PCC were extracted from all included articles (Table 2 ). Five articles had directly stated definitions or descriptions of patient-centered, person-centered, and family-centered care. The other nine articles did not describe their activities using PCC-related terminology but were still included due to the presence of PCC components. The most cited components of PCC in the literature, and thus, the themes of PCC, were comfort of environment ( n =8), communication ( n =7), education ( n =7), involvement of patient/family in information sharing and decision making ( n =7), respect and trust ( n =7), continuity and transition of care ( n =7), and emotional support ( n =5) (Table 3 ).

Challenges and benefits of PCC as perceived by ED staff

Challenges and benefits of providing PCC were noted in four articles ( n =4). Noted concepts of difficulties in providing components of PCC from the ED staff perspective were a lack of training or experience ( n =2), communication barriers by having multiple care providers ( n =1), complex patient needs ( n =1), the design of the ED space being set up for efficiency rather than communication ( n =2), patient frustration and negative attitudes ( n =1), work demands impacting providers’ ability to form relationships with patients and families ( n =1), and professional conflicts impacting trust between patients and providers ( n =1). However, components of PCC that were applied successfully saw beneficial results. ED staff reported that keeping patients informed helps to avoid emotional distress and uncertainty ( n =2), patient placement in close proximity to ED staff with clear lines of sight allows staff to offer their presence ( n =1), and encouraging patient participation ( n =1) and treating patients and families as experts in their own care ( n =1) brings about patient-provider collaboration.

Challenges and benefits of PCC as perceived by patients

Patient experiences were described in six articles ( n =6) demonstrating evidence of barriers to and benefits of receiving PCC. Concepts and key concepts of patient concerns included overwhelming waiting rooms ( n =1), difficulty of navigation ( n =1), and untrained or inexperienced staff ( n =2). Further barriers to a positive care experience were lack of frequent updates from staff ( n =1), limited access to information on ED care processes ( n =1), dismissive attitudes from ED staff towards patients’ and families’ input ( n =2), difficulty establishing communication with ED staff ( n =1), and the use of language by staff that patients cannot understand thus limiting their ability to participate in decision making ( n =1). Patient satisfaction was often achieved when components of PCC were present, for example, having frequent contact with staff ( n =1), when patients felt listened to and valued as experts in their own health ( n =2), when interacting with trained staff ( n =1), when respected by ED staff ( n =2), and being treated courteously without scepticism ( n =1). When they were able to establish relationships, patients were able to share more information with providers ( n =1) and place their trust in care providers to make good medical decisions on their behalf ( n =1). Furthermore, having a patient-focused environment with accessible features allows patients to be comfortable in the ED ( n =1) and having continuity of care via follow-up clinics helped patients to make changes to their lifestyles and attitudes ( n =1) that in turn better their health.

Impacts of PCC on outcomes

Four studies ( n =4) assessed the impacts of PCC components on various outcomes in the ED. Examples of quantitative impacts measured included patient length of stay ( n =3), number of patients who left without being seen ( n =1), and patient satisfaction ( n =1). Results of these studies demonstrated decreased length of stay ( n =3), reduced number of patients who left without being seen ( n =1), and greater patient satisfaction ( n =1) with the implementation of PCC-related interventions. Further qualitative findings support the idea that the patient experience is bettered by the presence of PCC components both individually and altogether.

Contribution of patient engagement

The results of this study were shared with patient partners for feedback. There was an agreement on the components of PCC in the ED that were identified, but it was noted that “building trust between patients and providers” might be another important component to consider. Inclusivity and ethnic representation among physicians were identified by patient partners as foundations to building better relationships as it helps patients feel like they can better relate to their care providers. Although these were not components identified in the literature, this may represent another gap in the knowledge of providing PCC in the ED when trying to meet patients’ cultural and psychosocial needs.

PCC can be a valuable contribution to emergency medicine practices. PCC in the ED includes aspects of communication, education, involvement of the patient/family in information sharing and decision making, comfort of environment, respect and trust, emotional support, continuity, and transition of care. However, there is not yet an operational definition for how PCC should be implemented in the ED. Though all the included studies shared common components, most of the studies did not include each component of PCC that was identified. This finding demonstrates there is no agreed-upon framework for PCC in the ED setting. This is echoed throughout the literature and identifies a concern that there is currently a lack of consistency in PCC models throughout the broader healthcare system. Where some studies lack multiple components of PCC, it is possible that they could have had better outcomes had they included the other aspects.

The PCC in the reviewed articles also varied greatly depending on what roles staff had, patients’ illnesses, and the care process involved, e.g., to move them quickly to a specialized unit for appropriate care or to make them more comfortable in the ED waiting room. The variations in perspective likely contributed to the resulting differences across the studies regarding what PCC was practiced and what patients or staff found to be beneficial or lacking. Additionally, there were many identified challenges echoed from both the staff and patient perspectives. For example, staff education was seen as a barrier and communication as an enabler to PCC by both the patients and the staff across multiple studies. This indicates that there is agreement and that the impact of PCC reverberates both positively and negatively throughout the healthcare system. This overlap may suggest a few key starting points to creating a unique definition for PCC in the ED.

Compared to models of PCC in different healthcare settings, there is an overlap of pillars that support patient-centered practices. In a review of over 900 studies on PCC across various healthcare settings [ 1 ], a few of the most common principles included taking a holistic approach, seeing the patient as an expert in their own care, recognizing autonomy and sharing responsibility in decision making, ensuring services are accessible, and having supportive, well-trained staff who can communicate and engage with patients. Further frameworks [ 39 , 40 ] outline that concepts related to the patient-centered environment include advocacy, values, and empowerment as well as staff being partners in care through collaboration, communication, and health promotion. Although five of the included articles in the current review examined populations with mental health emergencies, we did not identify any new themes through analysis and comparison between mental health and non-mental health populations. This contributes to the evidence that different healthcare settings may put emphasis on the components that are more relevant to their context, but the broad ideas of PCC are aligned with the current findings and support the notion that PCC in the ED does not need major adaptations to be integrated. It should also be recognized that components of PCC were practiced before evolving into what is known as PCC today [ 41 ]. Therefore, the conception of new PCC pillars throughout different healthcare settings is to be expected. Although the ED environment presents unique challenges, including patient-centeredness can help to create a better environment for providers and patients.

Until now, the components that should go into PCC in the ED have not all been recognized. Rather, they were accounted for piece by piece and not as a whole. One could argue that providing any one component of PCC is better than none; however, it is important to consider all components in a holistic, well-rounded patient-centered practice.

This review can be useful as a foundation to understanding the components of PCC that will improve the ED experience. It can also be used to assist in the development of PCC training modules for ED staff or implementation of better PCC practices in the ED. By using the outlined components of PCC and implementing some of the suggested methods and examples from the literature, it is possible to develop a comprehensive list of actionable PCC practices.

Limitations

The results of this review are limited by the evidence from the retrieved studies and by the quality of the information reported in those studies. In the quantitative articles, neither the effect sizes nor significance levels were provided in some cases, so we were unable to report this information. The data also did not support meta-analysis, which would have made our results stronger, due to the lack of quantitative evidence. Articles that are aligned with the current evidence are more likely to get published; therefore, it is possible that evidence opposing the included studies was not available due to publication bias. Our search was limited to only English language, peer-reviewed articles; therefore, it is possible articles in other languages or non-peer-reviewed articles were missed. Finally, because some of the included studies had small sample sizes, it is possible that the evidence from those EDs would not be generalizable to another population. In future, should more quantitative evidence become available, it would be beneficial to do quantitative analysis to get a better understanding of the effect of PCC on patient outcomes. The strength of the evidence produced through this review should also be evaluated as new information becomes available surrounding PCC in the ED.

Despite the challenges faced by staff, patients, and families, PCC overall has a beneficial impact. Some of the many downfalls of ED care identified by its users can be mitigated by implementing PCC. This study contributes to the literature on how we can address PCC in the ED and how it can be used to improve the ED environment. PCC has been identified by patients as essential to improving the patient experience and should be prioritized as an evidence-based method of providing care that meets the patients’ needs.

Availability of data and materials

Data sharing is not applicable to this article as no datasets were generated or analyzed during the current study.

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Acknowledgements

Thanks to the Canadian Mental Health Association Newfoundland and Labrador Chapter and the Consumers Health Awareness Network Newfoundland and Labrador for their participation in our patient engagement activities and for providing invaluable input towards the development of this study.

Funding agencies providing financial support for the SurgeCon study include the Canadian Institutes of Health Research; Newfoundland and Labrador Provincial Government (Department of Industry, Energy and Technology); Eastern Health (NL Eastern Regional Health Authority); and Trinity Conception Placentia Health Foundation.

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Anna Walsh, Holly Etchegary & Shabnam Asghari

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Elnaz Bodaghkhani

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All authors contributed substantially to this paper. LA completed the search and created the search strategy. AW and EB reviewed all articles from abstract screening to full text and completed the data extraction and analysis. SA was a major contributor to the methodology. HE and AW conducted all patient engagement initiatives, and DS contributed to the development of the research question and the manuscript from a patient partner perspective. CP contributed expertise on emergency department operations and provided physician perspective. The authors contributed to the manuscript and read and approved the final manuscript.

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Walsh, A., Bodaghkhani, E., Etchegary, H. et al. Patient-centered care in the emergency department: a systematic review and meta-ethnographic synthesis. Int J Emerg Med 15 , 36 (2022). https://doi.org/10.1186/s12245-022-00438-0

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Cancer-related emergency and urgent care: expanding the research agenda

• Nonniekaye Shelburne   ORCID: orcid.org/0000-0001-6886-8373 1 ,
• Naoko Ishibe Simonds 2 ,
• Roxanne E. Jensen 1 &
• Jeremy Brown 3  

Emergency Cancer Care volume  1 , Article number:  4 ( 2022 ) Cite this article

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Purpose of review

Cancer-related emergency department (ED) visits often result in higher hospital admission rates than non-cancer visits. It has been estimated many of these costly hospital admissions can be prevented, yet urgent care clinics and EDs lack cancer-specific care resources to support the needs of this complex population. Implementing effective approaches across different care settings and populations to minimize ED and urgent care visits improves oncologic complication management, and coordinating follow-up care will be particularly important as the population of cancer patients and survivors continues to increase. The National Cancer Institute (NCI) and the Office of Emergency Care (OECR) convened a workshop in December 2021, “Cancer-related Emergency and Urgent Care: Prevention, Management, and Care Coordination” to highlight progress, knowledge gaps, and research opportunities. This report describes the current landscape of cancer-related urgent and emergency care and includes research recommendations from workshop participants to decrease the risk of oncologic complications, improve their management, and enhance coordination of care.

Recent findings

Since 2014, NCI and OECR have collaborated to support research in cancer-related emergency care. Workshop participants recommended a number of promising research opportunities, as well as key considerations for designing and conducting research in this area. Opportunities included better characterizing unscheduled care services, identifying those at higher risk for such care, developing care delivery models to minimize unplanned events and enhance their care, recognizing cancer prevention and screening opportunities in the ED, improving management of specific cancer-related presentations, and conducting goals of care conversations.

Significant progress has been made over the past 7 years with the creation of the Comprehensive Oncologic Emergency Research Network, broad involvement of the emergency medicine and oncology communities, establishing a proof-of-concept observational study, and NCI and OECR’s efforts to support this area of research. However, critical gaps remain.

Introduction

An estimated 1.9 million new cancer diagnoses were made in the United States (US) during 2021 [ 1 ], with increasing frequency of treatment provided in the outpatient setting. Managing unexpected or acute side effects and adverse events from cancer and cancer therapy poses a challenge to ambulatory care patients, their caregivers, and the healthcare system. This often results in patients and caregivers seeking care outside of their oncology team. Retrospective studies of US emergency department (ED) visits by patients presenting with a cancer-related complaint report 4.2 million adult and nearly 300,000 pediatric visits annually [ 2 , 3 ].

Due to varying levels of oncology care model implementation, resource availability, and the complexity of cancer treatment, patients experiencing acute complications (e.g., fever, shortness of breath) rely on urgent and emergency care providers to efficiently triage and stabilize medical presentations and coordinate follow-up care with oncology care teams. Clinicians and researchers continue to develop and test assessment tools that identify patients at greater risk for high care needs and strategies to provide support that minimizes the need for urgent and emergency care. Initiatives, such as the Centers for Medicare & Medicaid Services Oncology Care Model, encourage innovation to improve quality of care and reduce Medicare spending through financial incentives [ 4 ]. The results of these efforts have been mixed. Some of the barriers to providing patient-centered care for unplanned care needs include the limited ability of non-oncology providers to access cancer patient treatment documentation, a lack of evidence-based cancer-specific triage and management pathways, and fractured provider-to-provider communication.

In 2014, the National Cancer Institute (NCI) and the Office of Emergency Care Research (OECR) began collaborating to address the paucity of evidence surrounding cancer-related ED visits. They held the first scientific meeting on the topic in 2015 and published a research agenda to advance the understanding of emergency care of cancer patients. The identified knowledge gaps covered characterization of the cancer population utilizing ED care, the management of the patient with febrile neutropenia and acute events, and the role of palliative care in the ED [ 5 ].

To update the state of knowledge, evidence gaps, and research recommendations, the NCI and OECR convened a virtual, public workshop in December 2021, “Cancer-related Emergency and Urgent Care: Prevention, Management, and Care Coordination” [ 6 ]. The workshop brought together over 100 participants with clinical and research expertise in oncology, urgent care, emergency medicine, healthcare delivery, nursing, social work, and patient advocacy. The goal was to reassess the knowledge gaps and research recommendations in cancer-related urgent and emergency care prevention, management, and coordination of care. This report provides an overview of the current landscape of oncologic urgent and emergency care and the research recommendations identified by workshop participants.

Progress and advances in cancer-related urgent and emergency care

Since the 2015 Workshop identified research opportunities and established new collaborations across oncology and emergency medicine, progress has been made in understanding the care needs of those experiencing oncologic complications in the urgent and emergency care setting. NCI has a stated research interest in cancer and emergency medicine that focuses on the following: (1) utilization and drivers of cancer-related emergency care, (2) risk stratification, prediction models, and intervention strategies, and (3) minimizing emergency care use [ 7 ]. Numerous funding opportunity announcements are available to support new grant submissions across these interest areas (Table 1 ). Since 2015, NCI has seen a rise in grant application submissions related to oncologic complications. For example, recently funded applications include characterization of patients diagnosed with cancer in the ED, implementation of an ED cervical cancer screening program, and development of an ED-risk stratification tool for immune-related adverse events. In addition, NCI funds projects assessing and managing cancer-related symptoms and toxicities in the oncology setting that include ED visits, a key healthcare utilization study endpoint.

Another outcome of the 2015 Workshop was the establishment of the Comprehensive Oncologic Emergency Research Network (CONCERN), created to accelerate knowledge generation, synthesis, and translation of oncologic emergency medicine research [ 8 ]. This research network conducted a prospective, observational study of adult patients with active cancer presenting to the ED with oncologic complaints. CONCERN study publications include a descriptive study on key population characteristics [ 9 ], a validation of the Emergency Severity Index triage tool during active cancer treatment [ 10 ], the characterization of pain severity, medication utilization, and clinical outcomes [ 11 ], and a descriptive study on observation unit care utilization [ 12 ].

Even with this tangible progress, the 2021 Workshop participants noted that many challenges remain. The themes that emerged from the current workshop were (1) utilization and prediction, (2) care delivery models and strategies, (3) cancer prevention and screening, (4) managing acute cancer-related presentations, (5) cancer-related goals of care conversations, and (6) designing and conducting cancer-related urgent and emergency care research studies (Table 2 ).

Workshop findings and recommendations

Ed utilization and prediction.

Four percent of adult ED visits in the USA are for cancer-related reasons. These ED visits occur across the cancer care continuum, including initial diagnosis, active treatment, survivorship, and at end of life [ 3 , 13 ]. Higher ED use has been reported for some cancers (e.g., lung, brain, leukemia) compared to others (e.g., prostate, breast) especially during the first year after diagnosis [ 14 , 15 , 16 ], and frequent reasons cited for these visits are symptom management (e.g., pain, fever or infection, respiratory distress, gastrointestinal issues). Risk factors associated with ED visits include chronic conditions, frailty, advanced-stage disease, being at sociodemographic risk, and prior ED use [ 9 , 14 , 15 , 16 , 17 , 18 ]. Significantly, cancer-related ED visits result in an inpatient admission at a rate 3.5 times than that of non-cancer-related ED visits [ 3 , 9 , 13 , 17 ]. Despite growing knowledge of cancer-related ED utilization and population characteristics, workshop panelists noted that there are continued gaps in the epidemiology literature, some of which are limited by the quality of available data and inconsistent definitions of avoidable or preventable ED visits.

ED visits and unplanned hospitalization are common in the cancer population, and better prediction tools are needed to identify patients at increased risk for high symptom burden, adverse events, or poor outcomes. By identifying high-risk patients for whom proactive care management might be warranted, strategies such as increased symptom assessments (e.g., electronic symptom monitoring, virtual follow-up) and addressing social needs (e.g., prescription plans for symptom control medications, transportation support) could help prevent some unscheduled care. For example, machine learning-based risk tools for mortality, ED visit, and hospital admission outcomes have been developed and validated for pre-treatment [ 19 ] and after starting treatment [ 20 ]. Although these machine learning and artificial intelligence models have the potential to predict outcomes, additional studies addressing limitation of single-center studies, testing in single electronic health records (EHR) type, and population representation are needed. Additionally, there is a growing body of literature supporting the use of patient-reported outcomes to facilitate cancer symptom assessment [ 21 , 22 ] and its impact on daily activities and quality of life. However, these assessments have not focused on the risk of unplanned care. Additional studies on which patient-level variables (e.g., clinical risk factors, prior ED use, and sociodemographic factors) should be included in these models, and their impact on healthcare utilization is needed.

To better address the needs of cancer patients, understanding their experiences in the urgent and emergency care setting is required. Thus far, patient perspectives “in the setting of an unplanned acute care event remain poorly described” [ 23 ]. Some cancer survivor workshop participants shared their experiences managing oncologic complications, reporting challenges in navigating the healthcare system, such as not receiving clear instructions on how to contact the oncology team for guidance with acute events. When they did turn to the ED for care, they frequently felt they had to advocate for themselves, and that ED providers did not always take their concerns seriously. One panelist suggested that quicker time to triage and provider assessment are warranted for patients with cancer, in a model similar to that provided in pediatric emergency departments. Taken together, research is needed to better understand how care coordination and resources can be improved for patients.

Workshop discussions also identified several research opportunities to better understand urgent and ED utilization and improve risk prediction of visits. A first step is to consistently define what is an avoidable or preventable urgent care or ED visit; standardizing this definition is essential for outcome measures in future research in utilization and prediction. Linking existing data sources, such as EHR and claims and registry data, and applying machine learning algorithms could identify cancer patients at risk of unscheduled cancer-related needs, as well as help characterize the individual, system, and societal drivers of acute care. Furthermore, additional prospective observational studies of cancer-related ED visits, including underrepresented populations and settings, are warranted.

Care delivery models and strategies

Cancer-related ED visits result in hospital admission at rates well above that of non-cancer patients (60% vs. 16%) [ 3 ]. More significantly, it has been estimated that 30 to 60% of these admissions can be prevented [ 24 , 25 ], and nearly 50% of oncology care cost results from preventable toxicities [ 26 , 27 ]. Implementing effective care delivery models across different care settings and populations to minimize urgent care and ED visits will be particularly important as the population of cancer patients and survivors continues to increase.

Workshop speakers presented several care delivery strategies that have been tested to minimize unscheduled ED visits and inpatient admissions as well as improve care in these patients. For example, access and care coordination, such as patient navigation [ 28 ], web-based symptom self-reporting [ 29 ], oncology urgent care clinics, nurse triage [ 30 ], and post-discharge interventions [ 31 ] have all been shown to reduce ED visits and/or hospitalization. Some ED and urgent care center observation units provide outpatient acute care that lasts more than 24 h in duration but is typically less than 48 h, and these have been reported to reduce inpatient admissions [ 32 ]. They are, however, an underused and understudied resource. The recent global SARS-CoV-2 pandemic also required hospitals and outpatient practices to develop and implement cancer-related symptom management strategies focused on preventing ED visits to reduce the demands on the healthcare system as well as to minimize exposure, and the prevalence of telemedicine has grown rapidly. More studies investigating the impact, cost, and sustainability of these strategies on cancer outcomes are needed.

While these care delivery models have been recognized as being important to improving the care of cancer patients seeking unscheduled care, there is no clear “best practice” model. Furthermore, it is not obvious how to scale up these resource-intensive models, and participants noted that some were cumbersome to implement. Participants noted that less than half of cancer patients call their care team for advice prior to seeking unscheduled care, even though many oncology teams provide a 24-h phone consultation service. Clearly, there is a critical need to better align the needs of cancer patients and caregivers to not only minimize unscheduled care needs but also provide supportive and accessible care. During the workshop, several important next steps were identified, including developing and testing care delivery models and strategies that have the most impact on minimizing urgent care and ED use, improving patient outcomes (e.g., mortality, hospital length o stay), and lowering costs of care delivery.

Cancer prevention and screening in the ED

Approximately, 2 million adults report using the ED as their usual source of care [ 33 ] presenting the opportunity to provide cancer control information and care. Those who seek care in the ED are more likely to be younger, socioeconomically disadvantaged, and racial/ethnic minorities [ 33 ] who do not have access to preventive care. There is a growing body of evidence showing that providing care that is typically thought of as preventive (e.g., vaccinations, tobacco, and alcohol cessation) while in the ED to be effective [ 34 , 35 ]. Moreover, it was noted that the ED is a “target-rich” environment with many patients needing cancer screening (e.g., Pap smear, mammography, colonoscopy), especially among those who do not have ready access to primary care. Participants further noted that using the wait time in the ED could be an opportunity to educate patients as they tend to be receptive. However, there were questions as to (1) how to incorporate screening and prevention efforts without overburdening staff, (2) which screening tests can and should be performed in the ED, and (3) how to ensure appropriate follow-up care.

To address these questions, a few key steps were identified by workshop participants, starting by characterizing the population who rely on the ED for planned care and who may most benefit from cancer prevention and screening services. Next, strategies to increase cancer screening uptake in the ED should be developed and tested. These could include providing simple or enhanced (e.g., mHealth) referral to local screening resources, placing a cancer screening/prevention unit near the ED, or actual in-ED screen. The development of technology solutions (e.g., smart EHR) to identify ED patients appropriate for cancer prevention and screening was highlighted as another research opportunity. Finally, identifying the best approach to ensure appropriate follow-up, such as using patient navigators, to improve preventive healthcare delivery to ED patients should be explored.

Managing cancer-related presentations in urgent care and the ED

Clinical pathways support evidence-based risk stratification and clinical decision-making for rapid assessment and treatment in the ED with the goal to predict resource utilization and improve patient outcomes. Pathways that are adopted address common clinical presentations and are easy to use. Pathways in non-cancer populations have been widely adopted in the ED, such as the HEART score for myocardial infarction with undifferentiated chest pain, pulmonary embolism rule-out criteria (PERC) for pulmonary embolism, and coronavirus rule-out criteria (CORC) for COVID-19. Workshop participants expressed that existing cancer-focused pathways, such as the Multinational Association for Supportive Cancer Care (MASCC) and Clinical Index of Stable Febrile Neutropenia (CISNE) for febrile neutropenia in cancer patients, are cumbersome and have not been validated prospectively. Furthermore, it was noted that frequently, the tools that appear promising at a single site are less effective when tested in other care settings.

Throughout the workshop, participants stated the need to develop and validate ED oncology-specific clinical pathways for commonly observed oncologic complications. Workshop attendees noted the need to adapt, test, and integrate existing care pathways used in oncology care settings into the ED and conduct research where gaps remain. Specifically, tools to assist with differential diagnosis of febrile neutropenia, pulmonary embolism, and immune-related adverse events for severity, resource utilization, and disposition were identified as an urgent need. In addition, it is important to develop and test diagnostic and prognostic biomarkers that can risk stratify patients, which in the ED setting, should have the following key features: easy to measure, fast time to result, and excellent predictive value. Comparing costs and efficiencies across care settings will support care pathways dissemination and implementation. Given the vital role these tools play in the ED, deriving risk stratification and clinical decision-making tools in a multicenter study that is subsequently validated in other populations and care settings is critical.

A lack of cancer-specific pathways in the ED also contributes to the high hospital admission rate for cancer-related ED visits. Tools that assess individual, system, and societal factors to inform the management of febrile neutropenia, for example, could assist providers in determining the safety of discharging patients home on oral antibiotics instead of admitting them for intravenous antibiotics. The goal of discharge to home comes with the need for improved post-ED communication between patients and provider teams. Workshop participants noted the need to standardize EHR data collection for oncology patient encounters in the emergency care setting to allow for sharing of medical records and supporting timely follow-up.

Cancer-related goals of care in the ED

Understanding the complexity of acute care ED visits for advanced stage patients with cancer and aligning care based on their needs and desires are an important research topics. Although there has been research demonstrating that specialized palliative and hospice care improves quality-of-life in cancer patients, palliative and hospice care referral is highly variable [ 36 , 37 ], in both oncology practice and the ED. However, many questions remain as to what approach and services best address these patients’ and caregivers’ needs. These include deciding which provider leads the “goals of care” conversation (social worker, nurse, physician), when the timing of the intervention should occur (episode of care: pre-, within-, post-ED visit), how it should be delivered (face to face, telephone), and what type of care should be provided (specialty palliative care, hospice care, community paramedicine, caregiver support).

This is further complicated by inadequate communication of care preferences throughout the various stages of disease progression. The “goals of care” conversation should preferentially occur in the outpatient oncology setting, yet it has been estimated that only about a third of patients with advanced cancer have this conversation with their oncologists [ 38 ]. When patients with advanced or late-stage cancer arrive in the ED seeking care, goals of care conversations can become a crisis communication, potentially leading to undesired invasive interventions. Although the ED visit is an opportunity to introduce such conversations, emergency physicians are often unsure of their roles in initiating these conversations and lack a practical method to guide discussions with seriously ill patients about their values and preferences in a time-pressured environment [ 39 ].

Several important research opportunities were identified to study cancer-related goals of care in the ED. Because identifying cancer patients in the ED who may benefit from palliative or hospice care services can be challenging for clinicians, implementing clinical decision support tools, such as EHR facilitated assessments, could improve a cancer patient’s quality of life. A better understanding of specific palliative care or end-of-life needs would facilitate targeting such interventions. In addition, research is needed to identify interventions that minimize the need for ED care in those with advanced cancer or near the end of life, as well as better coordinate care after such visits occur.

Designing and conducting oncologic emergency research

To support many of these research opportunities, workshop panelists and attendees stated that leveraging existing resources is key to generating knowledge related to oncologic urgent and emergency care. Several existing ED research networks were mentioned over the course of the workshop, including CONCERN, Geriatric Emergency care Applied Research (GEAR), Emergency Medicine Palliative Care Access (EMPallA), Pediatric Emergency Care Applied Research Network (PCARN), and the Multicenter Registry of potential COVID-19 in emERgency care (Project RECOVER). Additionally, oncology research networks, such as the NCI Community Oncology Research Program (NCORP), and existing cancer cohorts were noted as being potentially useful resources in conducting research related to oncologic complications. Although each resource has collected data with a specific focus — such as emergency medicine, dementia, palliative care, viral infections, and specific cancer types and treatment — they each represent opportunities to address identified evidence gaps.

As these existing resources highlight, workshop participants emphasized the role of persistent silos between specialties as hindering research and the delivery of optimal care. In particular, participants noted a separation between the emergency medicine and oncology departments (e.g., no dual appointments) that could be better bridged so that emergency medicine is recognized as an integral part of oncology care and research. Furthermore, the two disciplines tend to approach research differently (i.e., emergency medicine is more symptom-based, whereas oncology is organized by cancer type), and this distinction may have hindered collaborations. Participants also stated that many of the productive collaborations thus far have been at the individual investigator level rather than at a broader institutional level, and more effort to foster regional collaborations should be encouraged. Oncology and emergency medicine have a strong history of collaborating across disciplines where their clinical care and research interests intersect (e.g., oncology and cardiology for cancer-related cardiotoxicity and emergency medicine and neurology for stroke). These successful collaborative efforts should be replicated across oncology and emergency medicine at the investigator, institution, and professional organization level to help advance cancer-related urgent and emergency care research and expose junior clinicians and investigators to this emerging field.

Workshop participants emphasized the need for research efforts to understand and reduce disparities in care delivery experienced by underserved and underprivileged cancer patients who visit urgent care and the ED for unscheduled care. Cancer patients in rural areas with limited access to specialists experience higher rates of cancer-related mortality and suboptimal treatment outcomes compared to patients in non-rural areas [ 40 ]. To improve access to specialists, innovative interventions, such as enhanced telehealth in rural and community settings, could be evaluated, and any reduction in ED transfers to an academic medical center could be measured. Research efforts should optimally target translation of findings and interventions to a variety of care settings and populations to reduce disparities in care delivery among these patients.

Another aspect that is essential to future research efforts is to incorporate the patient perspective in all phases of research. The careful consideration of study design that reflects the needs of cancer patients is one important step that was noted. For example, including stakeholder-driven outcomes and comparators that are clinically justified and appropriate for the care setting and population is a way to better meet patient needs and preferences in the research setting [ 41 , 42 ]. Understanding the unique perspectives of cancer patients and survivors who experience oncologic complications and designing future research studies that accurately reflect their needs are critical.

This report highlights the progress made in cancer-related urgent and emergency care since the 2015 NCI and OECR workshop and identifies new research recommendations aimed at improving outcomes for those with unanticipated complications of cancer and its treatment. The research recommendations from workshop participants include the need to characterize the utilization of acute care services by cancer patients, predicting at-risk patients, care delivery models to minimize and support unplanned events, cancer prevention and screening efforts in the ED, management of cancer-related presentations, cancer-related goals of care conversations, and key considerations for designing and conducting research in this area. These research recommendations, coupled with the collaborative efforts of CONCERN and other scientific groups, have the potential to address the key evidence gaps and clinical care needs of cancer patients seeking urgent and emergency care.

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Abbreviations

Clinical index of stable febrile neutropenia

Comprehensive Oncologic Emergencies Research Network

Coronavirus rule-out criteria

Geriatric Emergency care Applied Research

Emergency department

Electronic health record

Emergency Medicine Palliative Care Access

Multinational Association for Supportive Cancer Care

National Cancer Institute

Office of Emergency Care Research

Pediatric Emergency Care Applied Research Network

Pulmonary embolism rule-out criteria

Multicenter Registry of potential COVID-19 in emERgency care

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Open Access funding provided by the National Institutes of Health (NIH). This work was supported by the National Cancer Institute and National Institute of Neurological Disorders and Stroke.

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Shelburne, N., Simonds, N.I., Jensen, R.E. et al. Cancer-related emergency and urgent care: expanding the research agenda. Emerg Cancer Care 1 , 4 (2022). https://doi.org/10.1186/s44201-022-00005-6

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• Emergency care research as a global health priority: key scientific opportunities and challenges
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• Junaid Razzak 1 ,
• http://orcid.org/0000-0002-6254-421X Blythe Beecroft 2 ,
• Jeremy Brown 3 ,
• Stephen Hargarten 4 ,
• Nalini Anand 2
• 1 Department of Emergency Medicine , Johns Hopkins University , Baltimore , Maryland , USA
• 2 Center for Global Health Studies , John E Fogarty International Center , Bethesda , Maryland , USA
• 3 Office of Emergency Care Research , National Institutes of Health , Bethesda , Maryland , USA
• 4 Department of Emergency Medicine , Medical College of Wisconsin , Milwaukee , Wisconsin , USA
• Correspondence to Dr Junaid Razzak; junaid.razzak{at}jhu.edu

Quality emergency medical care is critical to reducing the burden of disease in low-income and middle-income countries (LMICs) and protecting the health of populations during disasters and epidemics. However, conducting research in emergency care settings in LMIC settings entails unique methodological and operational challenges. Therefore, new approaches and strategies that address these challenges need to be developed and will require increased attention from scientists, academic institutions and the global health research funding community. Research priorities to address emergency care in LMICs have also not been well defined, resulting in limited research output from LMICs. This manuscript frames the efforts of four multidisciplinary working groups, which were established under the auspices of the Fogarty International Center as part of the Collaborative on Enhancing Emergency Care Research in LMICs and serves as an introduction to this series, which identifies challenges and solutions in the context of emergency care research in LMICs. The objective of this introductory paper is to articulate the need for emergency care research in LMICs and underscore its future promise. We present public health arguments for greater investment in emergency care research, identify barriers to develop and conduct research, and present a list of research priorities for community organizations, academic institutions and funding agencies. We conclude that advances in emergency care research will be critical to achieve national and global health targets, such as the Sustainable Development Goals (SDGs), and to ensure that evidence informs how such research is best conducted.

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Summary box

Relatively low research investments and lack of expertise in emergency care research have resulted in considerable disparities between the burden of emergency diseases and research output.

Despite challenges, there are multiple compelling reasons to conduct and invest in emergency care research and research capacity building in low-income and middle-income countries.

The Collaborative on Enhancing Emergency Care Research in LMICs effort recommends: strengthening emergency care research capacity, providing opportunities for collaboration and networking, increasing support for research and training from the research funding community and philanthropic organisations, standardising definitions of outcomes and exploring the use of technology for emergency care research.

Introduction

Approximately half of the total burden of diseases in low-income and middle-income countries (LMICs) is caused by time-sensitive emergency or acute illnesses and injuries. 1–3 According to the Disease Control Priorities Project (DCP2), as much as 45% of the disease burden in LMICs can be at least partially addressed by an effective and functional emergency care system. Five of the most frequent causes of death in LMICs—ischaemic heart disease, stroke, lower respiratory infections, chronic obstructive pulmonary disease (COPD) and diarrheal diseases, primarily present as an emergency, have time-sensitive treatments and show improved outcomes with quality acute care. The same is true for many causes of maternal and neonatal deaths, as well as injuries. 4 A recent analysis has shown a fivefold difference between the prevalence rates of emergency, time-sensitive diseases in high-income versus low-income countries. 2 Effective emergency medical care can serve as a health system intervention impacting health outcomes for a significant percentage of people dying or suffering disabilities in LMICs. Similarly, emergency medical care is a critical healthcare system during public health emergencies caused by various forms of humanitarian crises ( figure 1 ). The recent Ebola outbreak in West Africa highlighted the need to strengthen acute and emergency care systems in LMICs, while benefiting the global community. For purposes of this Supplement and the Collaborative on Enhancing Emergency Care Research in LMICs (CLEER), we focus on emergency care at the individual level.

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Scope of emergency care.

Definition of emergency care

The term emergency care means different things in different contexts. As shown in figure 2 , our definition encompasses the three essential components of emergency care, that is, time, location and diagnoses/symptoms.

Definition of emergency care.

For this series, we have limited the timeframe to care provided to a patient with acute, potentially life-threatening/disabling symptoms within the first 6 hours of contact with a health facility/provider. The time period of 6 hours captures treatment strategies and critical decisions for many conditions, such as sepsis, myocardial infarction, strokes, acute injury and maternal haemorrhage. The second component, location, generally includes emergency departments, ambulances, urgent care centres, and so on. In places where formal ambulances and emergency departments do not exist or have variable definitions, we define location as the location of the patient, or wherever initial life-saving care can be provided. The third component is the disease/symptom dimension, which includes a considerable number of conditions that can be classified as emergency or conditions, including injuries/trauma, myocardial infarction, stroke, COPD, asthma, allergic reactions, sepsis, maternal haemorrhage and pneumonia. Often early in emergency care, diagnoses are unclear and a patient’s journey starts with certain key symptoms, such as chest pain, severe headache, loss of consciousness or focal weakness. Therefore, the working definition of emergency care combines the time dimension of the first 6 hours with patients presenting potentially life-threatening symptoms or diagnosis anywhere in the healthcare system.

Public health imperative

Strong emergency care systems based on robust evidence are critical to advancing global health. However, conducting research in the context of emergency care involves many unique challenges. This Supplement lays out an agenda for tackling these challenges. There are multiple compelling reasons to invest in emergency care research and research capacity building in LMICs.

Burden of emergency diseases: Emergency, time-sensitive illnesses contribute to the majority of the disease burden in LMICs. According to Chang et al , 60% of disability-adjusted life years in LMICs are caused by emergency medical conditions. 4

Cost-effectiveness of emergency care interventions: Data on the cost-effectiveness of major public health interventions identified emergency medical interventions as some of the most cost-effective. For example, DCP defined the availability of volunteer prehospital care/ambulance services as the second most cost-effective public health intervention. Similarly, aspirin for myocardial infarctions and formal paramedic-run emergency medical care were identified as 6th and 21st most cost-effective interventions. 1

Emergency care systems are sources of important data and can help to better define the epidemiology for acute diseases, such as injuries, myocardial infarctions, cerebrovascular diseases and infections, and serve as surveillance systems during epidemics, such as Ebola, influenza and Zika. The acute care setting can also serve as a site for clinical trials for acute medical and surgical interventions.

Effective emergency care systems can serve as settings for public health interventions for difficult to reach populations: There are successful examples from high-income countries (HICs) on the role of emergency care systems in health promotion and disease prevention, such as smoking, drug and alcohol dependence, domestic violence, self-harm, hypertension screening and referral, and injury prevention. 5

Global health security: The concept of ‘health security’, or the protection from health threats, has recently been recognised as one of the most critical international security issues—particularly in light of the recent Ebola and Zika virus outbreaks. 6 In response to these increasing global health security concerns, efforts to build capacity in infectious disease and all-hazards disaster preparedness and response among developing and developed countries alike is an urgent priority.

Need for context-specific interventions in LMICs: Differences in disease profile and patient characteristics in LMICs require that interventions are properly tailored to specific contexts and not automatically transferred from HICs to LMICs. For example, early data on resuscitation have highlighted crucial differences in emergency patients in some LMICs, which require a different approach to resuscitation. A study by Maitland et al showed the harmful effects of implementing fluid resuscitation guidelines developed in the USA for treating children in Sub-Saharan Africa. 7

Global health and development priorities: The United Nations SDGs expect countries to achieve ambitious targets to reduce mortality and morbidity due to non-communicable diseases, road traffic injuries, and newborn and maternal deaths, which will remain unachievable without strong emergency care systems. 8 Table 1 presents the individual SDG targets and their relationships to emergency care.

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Sustainable development goals and emergency care

Investments in emergency care research

The National Institutes of Health (NIH) is just one of many funding organisations that share responsibility for supporting critical global health research priorities, but it is nonetheless informative to examine NIH investments in emergency care research. In general, NIH spends about 0.7% of its research budget on new research projects in emergency care. 9 In 2014 that amounted to US$25.5 million, but a further US$34.6 million supported ongoing (rather than new) emergency care research. 9 Among six specialties reviewed (emergency medicine, family medicine, internal medicine, obstetrics-gynaecology, paediatrics, and psychiatry and surgery), emergency medicine was the fifth-lowest in terms of funding per resident in training. 10 An unpublished review of a decade of funding to six specialties revealed that emergency medicine faculty (which is a subset of all those performing research in emergency care ) had the lowest number of NIH grants funded over the 10-year period. 11

Research capacity in emergency care in LMICs is limited. While there has been a significant increase in the number of clinical training programmes in Africa, Latin America and Asia, the focus of these programmes is service delivery and a few programmes have an academic focus or support. Notably, NIH has funded research training programmes, such as the Fogarty Global Injury and Trauma Research Training Program, to support emergency medical care research capacity building, among other areas. 12 This is a relatively small programme and unique effort, given the magnitude of impact emergency care can have on the public health outcomes.

In terms of research output, a PubMed search for the term ‘emergency care’ identified a total of 169 315 articles of which 8064 were identified as ‘clinical trials’ during a 10-year period of 2008–2018. When the search was limited to publications with authors from the current low-income countries (Cambodia, Chad, South Sudan, Tanzania, Zimbabwe, Comoros, Haiti, Benin, Nepal, Mali, Sierra Leone, Burkina Faso, Afghanistan, Uganda, Rwanda, Mozambique, Togo, Guinea-Bissau, North Korea, Ethiopia, Eritrea, Guinea, Gambia, Madagascar, Niger, Democratic Republic of Congo, Liberia, Central African Republic, Burundi, Malawi and Somalia), the total number of publications went down to 1344 (0.79%). Of these, only 44 were clinical trials (0.54%).

Research challenges in emergency care in LMICs

Research in the acute care context in LMICs is challenging for a variety of reasons. Some of these challenges are described below:

Defining and capturing the population of interest: Medical emergencies can happen at any location and because emergency care is provided at any location—from home to transport to the different levels of health facilities—it is often difficult to consistently capture all patients presenting with diseases or symptoms of interest to the researchers. Also, at least initially, patients present with symptoms and not diagnoses; since most of the health research is funded by and focused on diagnoses, this adds another level of complexity. The diagnostic certainty is further compromised in low-resource settings due to the limitation of diagnostic capabilities and trained personnel in emergency care settings.

Defining interventions and outcomes: Interventions are relatively easy to define in emergency care, while outcomes are often difficult to frame. As described in the manuscripts on emergency care clinical research and emergency health systems research in this Supplement, longer-term and more meaningful outcomes are often not available for many emergency care interventions. Outcomes are frequently defined by results in the first few hours of presentation and include either mortality outcomes or health services outcomes, such as admission versus discharge from the hospital. While emergency care interventions are short-term, long-term outcomes need to be captured as well. 13

Study design and data collection: There are clear challenges in data collection, data analysis and comparability of research findings. 14 Data collection is impacted by the acute, often life-threatening nature of disease presentation, the time sensitivity of interventions, the dynamic and volatile research environment and the over-burdened infrastructure. Data analysis is affected by symptom-based diagnosis, the availability of triage information and concerns about confounders in the environment. Data comparison presents challenges due to a lack of standardised data definitions. 13 In most low-resource settings, emergency care data capture is not a priority for the already stretched emergency care system. Clinical information is often captured through a paper-based data system and is rarely archived unless patients are admitted to the hospital. In one review, only 10% of emergency department-based studies from LMICs used a specific diagnosis coding system. 15

Ethical issues: Privacy, community engagement, fair participant selection and the ability to give and obtain quality informed consent in emergency care settings can be difficult. As discussed in the Ethics paper in this series, these challenges are intensified in LMICs by multiple factors including weak health infrastructure, high patient volumes, overworked providers and especially vulnerable populations. 16 Gaps remain regarding ethical guidelines and regulations for research and best practices.

Research capacity and research environment: Few academic departments in LMICs focus on emergency care. Emergency care remains largely a hospital service with no academic home in medical schools and universities.

Collaborative on Enhancing Emergency Care Research in LMICs

In July 2017, the Center for Global Health Studies at the Fogarty International Center at the NIH, convened a group of researchers with expertise in emergency care in LMICs to explore pressing research priorities in emergency care in LMICs, as part of the CLEER. The 39 expert participants were accepted from a pool of applicants and subsequently divided into four working groups of 7–12 focusing on (1) ethics, (2) surveillance and registries, (3) health systems and (4) clinical research. The participants represented 16 different countries and were mainly emergency medicine clinicians in both HICs and LMICs, joined by a few bioethicists and paediatricians. The group met physically at NIH for 2 days in July 2017 and then continued to teleconference several times over the next year in the four separate working groups.

The goal of CLEER is to promote research that improves outcomes for patients and populations with acute life-threatening or disabling conditions, focused on the care provided in the first minutes to hours of illness or injury. The groups’ mandate was to (1) identify important research gaps and critical research questions based on the level of the current evidence ( table 2 ) and (2) explore the methodological issues in answering some of these questions with a focus on population, design, outcomes, ethics and research environment and support structure.

Key research gaps and questions

CLEER was not intended to duplicate existing work focused on strengthening emergency care research. Previous efforts to examine how to best strengthen research in acute care settings and have largely been limited to the USA and Europe, and thus have not addressed the specific challenges for acute care research in LMICs. The Society of Academic Emergency Medicine did call a consensus meeting in 2013 to identify gaps and develop a research agenda for acute care services delivery in LMICs. The conference and resulting publication provided a broad research agenda with specific questions related to strengthening and sustaining effective acute care systems. 16 CLEER has built on this agenda, focusing on four distinct aspects of research conducted in emergency care settings: emergency care surveillance and emergency care registries, clinical emergency care research, establishing economic value of emergency care and research on emergency care system and emergency care research ethics.

Recommendations

Strengthening emergency care research capacity in lmics.

Almost all subgroups of CLEER highlight the need for building the individual and institutional capacity for research in emergency care in LMICs. There have been few successful models, such as the Fogarty International Center’s D43 training grant mechanism, which has helped emergency care research capacity in South Asia and Africa. Similarly, the Medical Education Partnership Initiative targeted academic capacity in emergency medicine in a few institutions in Sub-Saharan Africa. More targeted programmes on emergency care research would provide support and incentives for research institutions in HICs to collaborate and support emergency care researchers in LMICs.

Create opportunities for collaboration and networking

There are several professional societies and groups with an interest in various aspects of emergency care. Besides the societies in emergency medicine, national and international associations of paediatrics, surgery, infectious diseases and critical care include emergency care as part of their larger portfolio. However, CLEER is the first multidisciplinary group specifically targeting emergency care research in LMICs. If formalised, such groups can provide the necessary structure for global collaboration and networking.

Funding and support for emergency care research

Challenges with respect to funding include the fact that disease-focused requests for proposals often do not clearly fit the syndrome/symptom-based patient presentations in the emergency care setting. Also, ethical and logistical challenges make these grants less competitive in contrast to cleaner, stable research environments in non-emergency settings. Support specifically for research in emergency care settings would enable the science to grow and research methodologies in emergency medicine to be developed such that emergency medicine researchers can compete with more established fields of medicine and public health.

Standardised credible outcome measures

All of the CLEER subgroups highlight the difficulty in defining the input and outcome indicators for emergency care—at the individual, population and system level. Further work needs to be encouraged by the specialty societies to develop credit indicators, their definitions and method of measurement.

Explore use of technology for research

The surveillance and clinical research groups of CLEER highlight the need for better use of technology, especially mobile technology, for data collection as well as potential clinical interventions.

Emergency care is a critical entryway into the healthcare system and a key determinant of individual and population health, especially in LMICs. In this Supplement, experts articulate research gaps, needs and opportunities, while presenting a way forward with some innovative solutions. Specifically, the CLEER effort calls for strengthening emergency care research capacity, providing opportunities for collaboration and networking, increasing support for research and training from the research funding community and philanthropic organisations, standardising definitions of outcomes and exploring the use of technology for emergency care research.

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Handling editor Seye Abimbola

Contributors JR, BB and NA conceptualised and drafted the manuscript. JB and SH contributed to various sections of the manuscript and reviewed several drafts, providing critical inputs. JR created all tables and figures.

Funding This work was partly supported by the Center for Global Health Studies at the Fogarty International Center, National Institutes of Health, USA.

Disclaimer The findings and conclusions in this report are those of the author(s) and do not necessarily represent the official position or policy of the US National Institutes of Health, the US Department of Health and Human Services or any other institutions with which authors are affiliated.

Competing interests None declared.

Patient consent for publication Not required.

Provenance and peer review Not commissioned; externally peer reviewed.

Data availability statement The data that support the figures in this manuscript are available upon request from the corresponding author.

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• Published: 16 September 2024

Hybrid emergency care at the home for patients – A multiple case study

• Åsa Falchenberg   ORCID: orcid.org/0000-0001-8956-8011 1 , 2 ,
• Ulf Andersson   ORCID: orcid.org/0000-0002-1789-8158 1 , 3 ,
• Gabriella Norberg Boysen   ORCID: orcid.org/0000-0003-3203-3838 1 ,
• Henrik Andersson   ORCID: orcid.org/0000-0002-3308-7304 1 , 2 , 4 &
• Anders Sterner   ORCID: orcid.org/0000-0002-2430-5285 1 , 2  

BMC Emergency Medicine volume  24 , Article number:  169 ( 2024 ) Cite this article

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Introduction

Healthcare systems worldwide are facing numerous challenges, such as an aging population, reduced availability of hospital beds, staff reductions and closure of emergency departments (ED). These issues can exacerbate crowding and boarding problems in the ED, negatively impacting patient safety and the work environment. In Sweden a hybrid of prehospital and intrahospital emergency care has been established, referred to in this article as Medical Emergency Team (MET), to meet the increasing demand for emergency care. MET, consisting of physicians and nurses, moving emergency care from EDs to patients’ home. Physicians and nurses may encounter challenges in their healthcare work, such as limited resources for example medical equipment, sampling and examination, in unfamiliar varying home environments. There is a lack of knowledge about how these challenges can influence patient care. Therefore, the aim of this study was to explore the healthcare work of the METs when addressing patients’ emergency care needs in their homes, with a focus on the METs reasoning and actions.

Using a qualitative multiple case study design, two METs in southwestern Sweden were explored. Data were collected from September 2023 – January 2024 and consist of field notes from participant observations, short interviews and written reflections. A qualitative manifest content analysis with an inductive approach was used as the analysis method.

The result of this study indicates that physicians and nurses face several challenges in their daily work, such as recurring interruptions, miscommunication and faltering teamwork. Some of these problems may arise because physicians and nurses are not accustomed to working together as a team in a different care context. These challenges can lead to stress, which ultimately can expose patients to unnecessary risks.

When launching a new service like METs, which is a hybrid of prehospital and intrahospital emergency care, it is essential to plan and prepare thoroughly to effectively address the challenges and obstacles that may arise. One way to prepare is through team training. Team training can help reduce hierarchical structures by enabling physicians and nurses to feel that they can contribute, collaborate, and take responsibility, leading to a more dynamic and efficient work environment.

Peer Review reports

According to the World Health Organization (WHO), healthcare is facing several challenges, including an aging population [ 1 ] rising rates of chronic diseases, often characterized by exacerbation [ 2 ], which place greater demands on healthcare services. Simultaneously, the number of available hospital beds is decreasing, and due to staff cuts, there will be fewer ambulances and emergency departments (EDs) are closing [ 3 ]. In EDs, this leads to issues such as crowding and boarding, and which have a negative impact on the work environment such as workload that is too high, which may cause stress and risk of burnout [ 4 ]. Furthermore, crowding and boarding and have negative impacts on patient safety since of delays in medical treatment and inadequate monitoring, which can lead to increased mortality [ 5 ].

One way to meet patients’ needs for emergency care is to shift the care provided from the hospital to patients’ homes [ 6 , 7 ]. Offering home-based care (HBC) has been shown to be cost-effective [ 8 ] and safe for patients [ 9 ]. However, it may entail longer treatment times than hospital care, especially for certain chronic conditions [ 10 ]. Studies indicate that exacerbations of chronic conditions such as heart failure and chronic obstructive pulmonary disease, as well as pneumonias [ 11 ], symptoms such as fever, dyspnea [ 12 ], nonspecific symptoms in frail elderly patients, patients with cognitive impairment [ 13 ], and pain or injury to the skeletal or muscular system [ 14 ] can be effectively managed at patients homes. Currently, there is no consensus on what HBC entails or how it can be termed [ 15 ]. Terms such as “Hospital At Home” [ 9 , 16 ], “Same Day Emergency" [ 17 ], “Hospital In The Home” [ 18 ] or “Residential In Reach” [ 19 ] are used internationally, while in Sweden, general terms such as “Mobile teams”, “Mobile emergency teams”, or “Mobile home care teams” are used [ 20 ].

The Swedish healthcare system is divided into three levels of governance: state, region, and municipality. These levels are responsible for different parts of healthcare, specialized hospital care, primary care, and municipal care [ 21 ]. Currently, all levels are undergoing a transformation process called “good and integrative care” [ 22 ]. This initiative resembles the Integrated Care System in England [ 23 ] and aims to make healthcare more accessible and closer to the patient, focusing on their unique care needs [ 24 , 25 ]. As part of the Swedish transformation process to meet the increased need for emergency care, a hybrid of pre- and intrahospital emergency care has been established [ 25 ]. This hybrid version of emergency care will, in this article be referred to as the Medical Emergency Team (MET). The MET, consisting of two organizations, ambulance services (AS), and EDs, has merged and operates outside the hospital setting. MET is not the same as care provided by ambulance, primary or municipal care, MET is rather a combination of these services. The MET is staffed with ED physicians and nurses from the ED or AS and provide emergency care to patients who have suffered from sudden illness or injury [ 26 ] and operates wholly or partially from hospital-affiliated EDs.

When emergency care is provided in patients’ homes, a holistic approach is required to ensure that all aspects of patients’ care needs, including medical, caring, physical, psychological, social, and existential needs, are addressed [ 27 ]. This means that METs must be prepared to handle a wide range of care-related issues with limited resources, in an unfamiliar environment to ensure that the care provided in patients’ homes meets their needs [ 28 ]. This requires the MET to collaborate across boundaries both within the MET, and outside the team with other care providers such as AS, primary care or municipal care [ 25 , 29 ]. If the expectations of the MET’s care work, i.e., what they can do, are unclear, difficulties may arise [ 28 ]. In this study, healthcare work refers to performing various tasks which not only including technical skills such as collecting blood samples and managing medical equipment but also through understanding and responding to patients’ needs, both expressed and unexpressed. Furthermore, healthcare work includes communication within the MET, with patients and their relatives, as well as other healthcare actors. By examining how physicians and nurses reason and act when encountering patients’ care needs at home through the MET, obstacles and opportunities can be identified when hybrid emergency care is shifted to patients’ homes. The aim of this study was to explore the healthcare work of the METs when addressing patients’ emergency care needs in their homes, with a focus on the METs reasoning and actions.

Employing a qualitative multiple case study design [ 30 ], this study explored the MET as a contextually and socially bounded system [ 31 ]. The data were collected through participant observations, which enabled participation in daily activities, interactions, and events [ 32 ].

The research settings were two METs in the southwestern part of Sweden: MET A, which operated from a hospital-affiliated ED, and MET B, which operated from the AS. The possible assignments providers for MET A and MET Bs were similar. However, MET B could have paced assignments identified by the ED and AS when the MET was not operational. MET B could also be assigned to time-critical medical conditions to make initial assessments/treatments while waiting for AS. Primarily, the nurses were responsible for checking the equipment and restocking supplies in the vehicle. When the MET had no assignments, the physicians in the MET A supported their colleagues in the ED, carried out administrative tasks, and answered incoming calls to the MET. The physicians in MET B had administrative tasks and handled incoming calls to the MET when the team had no assignments. The two METs had varying conditions and staffing, and the equipment was slightly different between MET A and MET B, consisting of up to 13 different units. For more information see Table  1 .

Study participants and recruitment

The study received ethical approval from the Swedish Ethical Review Authority in Stockholm (NO: 2023-02186-01) and access to the research field was granted and formally approved by the managers of the participating facilities. All physicians and nurses who staffed the MET were invited to participate in the study. MET A was informed by the first author through a staff meeting and email, while MET B received the information verbally from the medical chief of the department. Each participant received both oral and written information about the study from the first author and signed a consent form. Other ethical considerations regarding data protection and data security were followed in accordance with the Swedish Data Protection Act [ 33 ]. All data are presented at the group level for the purpose of ensuring and maintaining the participants’ integrity and confidentiality, and the study aligns with accepted ethical principles for research [ 34 ]. The studies included five physicians and five nurses from MET A and five physicians and five nurses from MET B, see Table  2 for further information.

Data collection

The data were collected during the period from September 2023 to January 2024 and consisted of participant observations with field notes [ 32 ], interview notes [ 35 ] and written reflections [ 32 ].

Observations

The first author conducted all observations by following both METs for full work-shifts, and each patient visit was defined as one observation. The duration of the observations varied between the METs, se Table  3 . Physicians and nurses were encouraged to work as usual and to ignore the researcher, who aimed to maintain a low profile throughout. When arriving at the patient, the researcher was briefly introduced as a person who was there to observe how they worked.

All observations began when the MET received the assignment and ended when the door to the patients’ home closed. During the observation field notes were written containing what physicians and nurses said and how they reasoned when the assignment was received, during the assignment, and when it was completed. In total, 25 observation days were completed, comprising 73 observation instances. The observations lasted an average of 41 to 44 min and generated two to three pages of transcribed text, see Table  3 for further details.

To obtain a deeper understanding of METs reasoning about their actions when patients’ care needs were met, the following questions were asked; What are your thoughts about the assignment and what are your thoughts on the teamwork? Follow-up questions were posed in response to the answers given. To gain a deeper understanding, questions such as “Can you tell me more?” were used frequently. The interviews took place after the observations were completed, conducted in the car while leaving the patient.

After the completion of the observation and interviews, the first author wrote down reflections in a reflective text. The purpose of the reflection was to gain additional understanding of the research questions. These reflections were utilized in the discussion of the results.

Data Analysis

The collected data consisted of field notes, interview texts, and reflection texts were transcribed by the first author. During transcription, the text became more descriptive than the original because several fieldnotes were written with incomplete sentences when trying to write down as much as possible. The data were sorted into three phases of the MET assignment- preparatory, during the patient visit, and the reflection phase - which is a way to structure the data chronologically and provide organization [ 30 ]. To ensure that the analysis was as free as possible from interpretations, the author group discussed och reflected during the process. The qualitative manifest content analysis was conducted using an inductive apporach [ 36 ] and began with the first author reading the fieldnotes and interview texts multiple times to understand the content and obtain an overall sense of the data. In the second step, units from the text were extracted that addressed the aim of the study, to capture and describe METs healthcare work such as communication, physical actions, understanding and responding to patients’ care needs. These units were condensed without losing the content and coded based on their content. The codes were then sorted into categories and subcategories describing different aspects, similarities, or differences, ultimately forming four categories: Assignment reception and preparation phase, patient interaction and examination phase, decision-making and treatment phase and reflection and evaluation phase.

The results will be presented in chronological order, from when the METs receive the assignment until the assignment is completed, concluding with reflections from the METs. The results will include situational descriptions and quotes to present general patterns for MET A and MET B; unless otherwise specified, the aspects were the same. Each phase begins with a generic vignette that encompasses of several observation sessions. Individual observations are presented with the unique observations number.

Assignment reception and preparation phase

The METs are on their way to a patient , the physician reads loud from the patient’s medical record , the phone rings repeatedly , regarding new assignments and questions from AS , municipality care, etc. After each call , the physician gives a summary to the nurse. The nurse asks “inquisitively”… which patient are you referring to? The one we’re heading to , or is it another? Transportation time is then spent with the physician dictating notes in the patient’s medical records where recommendations to seek other levels of care or stay at home are given. When the nurse parks the vehicle outside the patient’s address , the METs discuss which equipment to bring.

Patient assignments could be provided at any time during the shift via phone or radio, and the information was sometimes vague or incomplete. The time for preparation varied depending on when the assignment was received, where the METs were geographically located in relation to the patient’s address, whether in an apartment in the same building or several kilometers away. Physicians received the most calls; occasionally, the speakerphone function was used so that the nurse could take part in the conversation and ask questions. On occasions when nurses answered the phone, a brief report was taken, and the nurse was asked to call back after consulting with the physician, or the phone was handed directly to the physician. Unlike MET A, MET B could receive assignments from the ED and AS when the MET was not operational. Messages were then written on notes handed over in person during shift changes at the ambulance station or at the ED. MET B could also be assigned to a critically ill patient, resulting in all delays for all other accepted assignments. On some days, assignments could pile up, causing patients to wait for several hours or for the METs to decline assignments. When assignments were received, the METs discussed the pros and cons to determine if it was a suitable patient; the physician had the authority to accept the assignment.

Nurses drove the vehicle, and transportation time could occur in silence, with the phone ringing incessantly, or with the METs discussing private matters. Physicians read and documented in the patient’s journal for upcoming and completed patient assignments. The METs could have difficulties finding the correct address; the functionality of the navigation system varied, and on several occasions, it did not work at all or provide incorrect directions. Upon arrival at the correct address, the need for additional information, such as a gate code or miscommunication regarding contagious patients, was discovered. When the vehicle was parked outside the patient’s residence, the decision on which equipment to use was made. Physicians were responsible for bringing the laptop bag and ultrasound equipment, while nurses were responsible for carrying other equipment. In instances where physicians were in an ongoing call, the nurse entered the patient’s home alone, but usually, the METs entered together.

Patient interaction and examination phase

When the METs entered the patient’s home , the physician approached first , either standing or squatting in front of the patient and said: Hello , my name is xxx and I am a physician , how are you? The nurse stands quietly behind , not wanting to interrupt the patient’s conversation with the physician and beginning to retrieve and set up the lab equipment. The physician examines the patient , is interrupted several times by phone calls , and then prescribes which tests to take. The nurse , who has been in another room , is not prepared for which tests to take and does not understand why.

When the METs arrived at the patient, they introduced themselves by name and title, and that they were from the MET. The physician was often the first to reach the patient. In instances where the MET had been assigned a critically ill patient, which was a part of MET B’s mission, there were usually already one or two ambulances on site. The physician then first contacted the ambulance nurse. When MET B was the first unit on site, the physician took the medication unit and went in alone to see the patient while the nurse parked the vehicle and brought in the rest of the equipment.

After the introduction, physicians usually immediately began gathering information about what had happened and how the patient was feeling. This meant that the nurse did not have a natural opportunity to greet, which could result in the nurse’s introduction occurring later during the visit or being completely omitted. Physicians often choose to sit down beside the patient or squat down. Before the examination, lights were sometimes turned on, blinds were pulled up, and the bed was raised. This was sometimes initiated by the patient, other individuals present, or the METs themselves. Examinations could also be conducted by leaning over the patient, in dim light where mobile flashlights were used to read vital signs. Depending on how many other people were in the room, information about the sequence of events could come from multiple sources. Nurses sometimes chose to listen as physicians gathered information, sometimes asked questions, or assisted when communication between the patient and physician did not work. When several people were present, it could sometimes become noisy in the room, resulting in the patient not hearing or understanding what the physician was asking, and the patient’s voice not being heard. The METs could be interrupted several times by phone calls with requests for new assignments, pending assignments, and advisory calls from AS.

The examinations were conducted based on the ABCDE principle (airway, breathing, circulation, disability, and exposure) and were carried out by a physician, while the nurse performed the examination, when agreed upon during the preparation phase. Physicians always listen to patients’ lungs. The nurse sometimes participated in the initial examination by handing equipment such as a stethoscope to the physician or standing quietly by the side and listening. Unlike in the MET A group physicians in the MET B group were interested in improving nurses’ examination techniques, such as listening to the lungs and interpreting electrocardiograms (ECG). Physicians encouraged the nurses to listen and report what they heard or allowed the nurses to make the initial assessment of the ECG. Different examination findings were discussed openly, which could lead to various expressions of curiosity and questions among those present. Most often, the nurse chose to begin measuring vital parameters (respiratory rate, saturation, blood pressure, pulse, and temperature) or to prepare the laboratory equipment during the ongoing examination. The cold blood pressure cuff was warmed on rare occasions. The clothing of patients could be partially or fully removed during the examination and was not routinely returned after the examination. Once vital parameters had already been taken, the nurse waited to take new until the physician indicated a desire for them. Nurses could express concerns about patients’ well-being, such as affected vital parameters during the ongoing examination, which the physician did not confirm or did not consider noteworthy.

The nurse measures the patient’s saturation… looks at the meter… furrows brow in concern , asks the patient to take a few deep breaths. Says to the physician: …are you noting the value? Yes , says the physician , who continues to sanitize the equipment [Observation 45].

Problems that could arise when vital parameters were taken included that they were often said out loudly in the room, which colleagues did not always hear. The values could be noted on journal sheets, pieces of paper, on gloves, or not at all. This resulted in uncertainties about which parameters had been taken and what they showed. The mission of MET B, unlike that of MET As, was to care for elderly patients. They could be interrupted during ongoing examinations to care for another patient, residing in the same assisted living facility, who had suddenly deteriorated. In those instances, the nurse stayed with the patient and continued the examination.

Sampling, which occurred after a physician’s order, was performed by nurses. Sometimes, the nurse could interrupt the ongoing examination to obtain blood samples without a physician’s order; other times, the nurse stood by and waited, ready with the sampling materials. When the nurse took the samples, the physician usually chose to sit down in another room to read the patient’s journal and plan for potential treatment. Nurses were responsible for retrieving the laboratory equipment and placing it where there was sufficient space, usually in an adjacent room; patients were then left alone while blood samples were analyzed. The results from sampling were crucial in some cases, such as when patients could not participate in the visit due to a disability. Blood samples could be taken via arterial, venous, or capillary methods, with the choice of method varying. In MET A, it was the patient’s symptoms and signs determine the choice of sampling method, while in MET B, arterial or capillary blood samples are usually taken. The reason for choosing the sampling technique was unfamiliarity with the venous sampling technique and the nurses’ interest in learning to collect arterial samples. This resulted in patients being punctured multiple times, and the decision regarding sampling could suddenly be re-evaluated when the sampling failed when there was a lack of available analysis material.

The issues that could arise with laboratory equipment included its sensitivity to cold temperatures and the shortage of the special cards. Attempts to warm the laboratory equipment were made by placing it near warm sources in the patient’s home, warming it against the body, and re-evaluating the need for sampling. MET A chose to place the sensitive equipment in another location in the vehicle, which MET B did not have the opportunity to do. The lab equipment was space-consuming, which challenged the METs in homes with many personal belongings and dirty surfaces. MET A, which had more lab equipment than MET B, forgot part of the equipment at the patients’ homes. METs can carry up to seven units into the patient, depending on the patient’s condition. Space constraints combined with large jackets during cold weather caused patients personal belongings to fall to the floor and break.

Decision-making and treatment phase

Physicians made decisions regarding treatment , which could involve medication , palliative care orders , expanded sampling , and continued hospital care. Physicians discussed treatment options with patients , when possible , as well as other healthcare personnel present. The nurse , who often remained in another room to manage patient sampling and pack equipment , did not hear the discussions and thus was unprepared for potential treatment and lacked knowledge of prescribed medications. When the decision for hospital transport was made , the nurse arranged it while the physician documented.

Decisions about treatment were typically made by physicians during the examination or sampling phase and could involve medication, expanded sampling, continued hospital care, palliative care orders, or observation. During this phase, METs could be interrupted repeatedly, resulting in incomplete perceptions of orders and important decisions made. Nurses repeated the current medication orders and awaited confirmation from the physician before administering the medication. Nurses could ask patients and relatives several questions but did not wait for or expect a response. Physicians usually provide medical self-care advice, while nurses ask if they have sufficient support from other healthcare providers. Nurses could also take initiative and suggest treatments to patients who had not communicated with the physician, which could sometimes lead to misunderstandings regarding patients’ degree of illness.

Patient with diarrhea , vomiting , high fever , and dizziness for five days. The patient said , “I find it hard to drink”. Nurses responded “ … it is a shame to go to the hospital , better to stay at home. You should take paracetamol and ibuprofen regularly throughout the day for the fever , and then you must drink properly , preferably soup or oral rehydration solution”. Meanwhile , the physician stands a short distance away , looks worried , makes a few attempts to intervene in the conversation but fails and eventually gives up [Observation 45].

Physicians typically proposed treatment options to patients, and in cases where patients had conditions such as impaired cognitive abilities or were in the end-of-life stage, they were not involved in decision-making. Decisions were discussed with other healthcare personnel if they were present. Relatives were involved when possible, and some decisions required physicians to try to help the patient understand, such as patients with mental health issues. The mission of MET B included, for example patients who experienced cardiac arrest and patients who died. During these missions, the MET took the time to talk about and support the relatives present and reassured them that the patient had not suffered.

The familiarity with handling the medications that METs carry varies. Nurses in the MET A were accustomed to administering the medications typically used in the ED, such as antibiotics, unlike those in the MET B. When questions and uncertainties arose regarding medications, which could concern how antibiotics should be diluted and administered, nurses consulted physicians, but they lacked practical knowledge. They then searched for information together on the internet or called the hospital’s ED for advice. On occasion, prescribed medication was not given because both the physician and the nurse lacked knowledge of how the medication should be administered.

Patient with suspected sepsis… the MET has called an ambulance… Physicians have ordered intravenous antibiotics. The nurse asks;… should we skip giving the antibiotics… the ambulance will be here soon? [Observation 42].

When multiple tasks needed to be performed, physicians could offer to administer medications. Since physicians were not familiar with the units containing medications and equipment, nurses had to interrupt their ongoing tasks to show the physician which unit the equipment was in and how it worked.

Patients who expressed insecurity about staying at home or being too ill were offered hospital care. The nurse arranged transportation to the hospital, assisted in moving the patient from, for example, the bed to the ambulance stretcher, and was responsible for filling out the journal sheet accompanying the patient to the hospital. The physician was responsible for documentation and contact with the receiving unit. When the physician had a probable working diagnosis and when there were available beds in the hospital wards, patients could be admitted directly. However, when there was a shortage of beds, which was common in MET A, or when the diagnosis was unclear, patients were transported to the hospital’s emergency department for further evaluation, treatment, and waiting for an available bed. The physicians were always documented in patients’ journals, while the extent of nurses’ routine documentation varied. The differences included nurses in the MET A documenting the reason for the visit, nursing status, entering test results, updating interventions from community care, and phone numbers for the patient and relatives in the patient’s hospital journal. MET B’s nurses documented by creating a case log in an ambulance journal, with reference to the physician’s notes in patients’ hospital journal.

The other healthcare providers with whom the METs collaborated with varied depending on the differences in the mission descriptions. Cooperation with municipal care was common, and physicians were responsible for handovers. MET visits often include takeovers, which could consist of newly prescribed medications, administration of antibiotics and intravenous fluids, as well as vital sign monitoring. There were regulations at certain special accommodations in MET B’s catchment area that governed, for example, the use of IV stands inside patients’ rooms. This resulted in the application rule being broken at the MET initiative when a patient needed intravenous fluids. The extent to which the prescribed medications were left varied. MET A left newly prescribed medications, either for the entire treatment period, which last up to 10 days, or for the first two to three days. Intravenous antibiotics were always left for the first day, then a follow-up visit was usually scheduled for the next day, or the patient could transition to oral treatment. In MET B, the first dose of antibiotics was given intravenously, and possibly the first tablet dose, with the remaining doses prescribed by the physician.

When the mission was considered completed, it was usually the nurse who sanitized the equipment and packed it. The MET usually said goodbye together and tried to restore the patient’s home to how it was when they arrived. Nevertheless, on occasion bright lights were forgotten to be turned off, the patient’s bed was not turned down, and that the patient would not become cold was not ensured. Usually, the nurses carried the equipment to the car, while the physician was responsible for the computer and printer and possibly the ultrasound on occasion.

Reflection and evaluation phase

The METs reflected on whether the mission had involved an ‘appropriate patient’ and considered whether additional examinations that the METs did not perform, such as X-rays, could have affected or improved the quality of care. Patient benefit was viewed as crucial, where the METs considered patients’ preferences alongside potential risks of staying at home, such as an increased risk of falling. The assigned missions often concerned patients who could be effectively treated at home, where a visit to the ED would not have added value.

The assignment involved a patient with addiction problems. The apartment was filled with cigarette smoke , with stacks of newspapers along the walls and personal belongings scattered everywhere. The MET had been contacted by home healthcare. The patient was not very responsive during the examination [Observation 9]. The doctor said; “The patient would have been sent to the ED if the MET had not assessed and treated the patient at home. However , an ED visit would not have made any difference to the patient’s outcome”. The nurse added: “I noticed he was so tired and lethargic… he seemed affected.” The physician responded , “…I had no thoughts of that at all” [Interview 9].

However, the METs also acknowledged that some missions required skills they did not possess, particularly in psychiatry. They expressed uncertainty about their role in certain missions and believed some were better suited for ambulance care, such as patients needing oxygen therapy. For patients requiring oxygen, the METs felt hospital care was necessary and that their involvement could delay treatment. Missions solely based on telephone assessments of patients’ needs were often considered less reliable compared to those assessed by licensed personnel on site. Patients’ emergency care needs varied, from requiring rapid hospital transport to care within primary care settings. The METs noted that some missions were not about providing home care but rather about optimizing ambulance resources, using methods like stretcher transport or a single-nurse ambulance. The METs agreed that in some cases, patients had waited too long for an ambulance and needed quicker intervention.

The METs expressed that within the team, there was an enabling and safe climate where they complemented each other and worked beyond professional boundaries, which they considered a strength. However, nurses sometimes felt that their skills were underutilized in missions that solely involved transporting physicians to patients. Nurses in the MET B group perceived ambiguity in their professional roles, while those in the MET A group experienced inequalities in task distribution. They expressed feeling responsible for multiple tasks, which could be time-consuming and challenging, such as checking vital signs, conducting tests, and addressing patients’ care needs, where they believed physicians could offer more support. The METs highlighted several strengths in teamwork, such as having one team member communicate with the patient to establish a strong connection and contribute different perspectives, with doctors focusing on the medical aspect and nurses on the care perspective. While the METs felt confident in the medical aspect, physicians found nursing tasks challenging, including assessing patients’ nutrition, elimination, personal hygiene, and fall risk assessment.

The mission involves an elderly patient in a nursing home with deteriorated general condition , diagnosed with dehydration by the time the MET leaves the patient [Observation 14]. On the way back , the nurse says; ”The patient resides in a facility , and it is not our responsibility to take over the facility’s duties. Since the patient did not express a desire for anything to drink , nursing interventions can be deprioritized in favor of other patients who are waiting [Interview 14].

The METs reflected on whether the decisions made were right or if they could have done things differently. Physicians in MET B viewed receiving many questions as positive because it prompted deeper thought. There was a clear need for confirmation among physicians during missions involving difficult-to-assess patients or making challenging decisions, such as end-of-life discussions and initiating palliative care orders. However, this need for confirmation was not always recognized by colleagues. Instead, nurses expressed concern about the lack of written information detailing the actions taken and the treatment plan implemented.

The results of the multiple case study indicate that physicians and nurses face several challenges in their daily work such as recurring interruptions, miscommunication and faltering teamwork. This can lead to stress, which not only exposes patients to unnecessary risks but also negatively affects physicians and nurses [ 37 ]. One way to attempt to understand and interpret the work systems within which physicians and nurses operate within is to investigate what happens within and outside the MET and how it can affect caregiving [ 29 ].

The results indicate that the MET could be interrupted multiple times during a patient visit by incoming calls regarding potential new patient assignments, ongoing consultations, or advisory calls from, for example, the AS. Additionally, as described in the assignment reception and preparation phase , MET B could be assigned to a critically ill patient. These interruptions could cause ongoing examinations to be disrupted and force physicians to start over, resulting in inefficient work. Constant interruptions can create feelings of losing control, leading to dissatisfaction and stress, which can result in burnout over time [ 38 ]. Emergency physicians and nurses are more frequently affected by burnout and emotional exhaustion [ 39 ]. Interruptions can negatively impact their ability to concentrate, potentially leading to inadequate or incorrect decisions regarding the care and treatment required for the patient’s condition [ 40 ]. In addition, the MET did not have necessary information such as access codes, and lacked knowledge about whether patients were carrying infectious diseases such as COVID-19 or gastroenteritis. Sometimes, the physician had received this information but had not shared it with the team. The failure to have such information exposed the MET to unnecessary risks of either contracting infections themselves or spreading them further. Previous research indicates, for example, that staff in AS are at greater risk of acquiring infections due to the uncontrolled environment in which they work [ 41 ].

Physicians were often the first to acknowledge the patient and would begin taking the medical history when MET arrived unless it involved a critically ill patient, which could be the case in MET B. On those occasions, as described in the patient interaction and examination phase , the physician took on a more withdrawn role. It was evident during the observations that the AS were accustomed to handling these situations and that the METs medical contribution was limited. Many patients who received care and treatment from the MET, especially MET B were elderly residents living in nursing homes. On several occasions, the MET expressed that these elderly patients were ideal candidates for emergency care at home, but also perceived that many of the visits would have been more appropriately managed by primary care. This is supported by previous research, which shows that emergency physicians and nurses perceived a lack of competence and insufficient involvement in patient care as contributing factors to AS being called out and the patient being transported to the ED [ 42 ].

During the examination, physicians might ask the nurse to measure vital signs, hand over a stethoscope, or remove the patient’s clothing to facilitate a more thorough examination This approach could be due by the fact that physicians working in EDs are accustomed to having limited time for gathering necessary information for making treatment and diagnosis decisions [ 43 ]. Medical history and examination results sometimes occurred simultaneously but could also occur separately. The questions asked were often open-ended, such as ”How are you feeling?” and ”Can you tell me why we are here today?”. Nurses often choose not to participate during the physician’s examination, as described in the patient interaction and examination phase . Instead, they prepared the lab equipment and carried out the physicians’ orders, acting as assistants. MET A, had more lab equipment to prepare than MET B, which could be time-consuming to unpack and set up. This withdrawn role that nurses sometimes adopted could lead to care becoming primarily medically focused, potentially overlooking patients’ comprehensive care needs. It is not surprising and not a new phenomenon that emergency care primarily has a medical focus [ 44 ]. Previous research shows that in EDs, there are deficiencies in both identifying and responding to patients’ fundamental care needs, such as nutrition, elimination, and fall prevention, which can lead to adverse events [ 45 ]. MET A was more likely to follow the ED’s routines and guidelines, such as documenting provided care and collecting blood cultures before administering intravenous antibiotics—a practice that was not followed at all in MET B. By adhering to these guidelines, MET A not only ensured compliance with established protocols but also enhanced patient safety. Guidelines are an essential tool for providing updated information and increasing the standard of [ 46 ]. In conclusion, while the medical focus in emergency care is undeniably important, integrating a comprehensive approach that includes adherence to guidelines is crucial, especially since this type of mobile care is primarily provided for frail elderly patients [ 25 ].

One way to increase patient safety and quality of care could be to work in teams [ 47 ] where collaboration is highly emphasized [ 25 ]. Collaborating is important in all care context, but is especially crucial in emergency care, where decision need to be made rapidly with limited information [ 48 ]. When emergency care is delivered in patients’ homes, MET face several challenges, including weighing the benefits and risks of providing care at home while also considering the patient’s wishes and autonomy [ 49 ]. The results of this multiple case study indicate that teamwork in the MET could be insufficient. Physicians and nurses had differing perceptions of the goal of the patient visit. A possible explanation for this could be a lack of sufficient communication between physicians and nurses. Nurses were not always involved when assignments were accepted, resulting in them having little or inadequate information when they arrived at the patients’ homes. During patient visits, physicians and nurses often worked separately, indicating a sequential working method, as described in the patient interaction and examination phase . A work system consists of several interdependent parts with various characteristics that rely on each other, making caregiving complex [ 29 ]. A sequential working method can thus contribute to unsynchronized, inefficient care, with risks for patient harm, such as missed nursing interventions or the failure to treat time-critical conditions according to standard protocols, such as early administration of antibiotics in suspected sepsis patients [ 50 ]. Another possible explanation for physicians and nurses working separately could be hierarchical structures within the MET. These hierarchical structures might have included ambiguities regarding professional roles and who was expected to be responsible for and carry out different parts of the healthcare work when identifying and meeting patients’ care needs [ 50 ]. In addition, previous research has highlighted the necessity of shared responsibility for patient care, which develops over time [ 51 ]. Another explanation could be that both METs were relatively new, involving a completely new way of working for which physicians’ and nurses were not trained for.

However, this study reveals that the phases described in the results can happen at any time and affect each other, underscoring the complexity the MET encounters when managing patients’ care at home. These factors, when combined, can negatively impact both care and patient safety [ 50 ] especially if the skills within the MET are not fully utilized. To address this, it is suggested that interprofessional simulation be implemented. This approach brings together different disciplines, allowing them to practice collaborative care in a controlled setting, which could enhance patient safety [ 52 ].

Strengths and limitations

A strength of this study is that it was conducted as a multiple case study, which is more compelling and robust than single case study [ 30 ]. Data also describe current phenomena in their real-world context, which is advantageous when the boundaries between the phenomenon and the context are unclear [ 30 , 32 ]. Another strength is that several approaches were used to gather data such as participant observations, short interviews and reflections. This enabled triangulation, which is a method used to explore complex phenomena that cannot be fully understood, with a single method or data source [ 53 ], can provide a broader and deeper understanding of physicians’ and nurses’ healthcare work in this hybrid form.

However, there are also some limitations to acknowledge. When the study was conducted, the METs were relatively new, which may have led to certain issues related to their ongoing development. To gain access to the research environments, gatekeepers were used. This can be seen as a weakness since gatekeepers are often key individuals within the organization with certain power, which may have influenced the participants to take part in the study to appease the chief. There were also differences in the number of observations between the METs. A reason for this was METs differed in missions and geographic catchment areas. The size of the area they served may have affected the number of completed observations due to the time they spent traveling between patients’ homes. Technical differences regarding the vehicles between the METs, as well as the inability to control incoming phone calls, may have resulted in important information being overlooked.

Finally, a limitation may be the professional role of the observer as a licensed nurse, which complicated maintaining the researcher role. On a few occasions, the first author had to abandon the observer role to assist with equipment and medication, which may have led to some data not being recorded. However, patient safety was a priority.

Conclusion & implications

This study highlighted the challenges physicians and nurses meet when a new service is launched in emergency care. The challenges include the expectation for physicians and nurses to collaborate in teams, ambiguity in job descriptions leads to inefficiencies and uncertainty. Moreover, physicians and nurses are not accustomed to working together, and team compositions change almost every shift. As a result, established work routines are difficult to maintain, requiring team members to constantly adapt to new colleagues and workflows.

It is also important to note that these challenges can contribute to increased stress levels among staff, which can negatively impact patient care. When there are deficiencies in communication and collaboration within the team, this can lead to mistakes or delays in care, exposing patients to unnecessary risks. To counteract these problems, it is crucial to invest in team training and to develop clear job descriptions and routines that support effective and coordinated teamwork. Team training can help reduce hierarchical structures by enabling physicians and nurses to feel that they can contribute, collaborate, and take responsibility, leading to a more dynamic and efficient work environment. By practicing reflection and feedback after completing assignments, a more inclusive and development-oriented environment can be fostered, which in turn can positively impact the care provided by METs.

In summary, the study shows that it is essential to place great emphasis on planning and preparation when introducing new forms of care such as MET. By ensuring that all team members are well-prepared and that there are clear structures and support in place, a more dynamic and efficient work environment that benefits both staff and patients can be created. This hybrid version of prehospital and intrahospital emergency care is a complement to traditional hospital care, ED, AS, primary and municipal care. This requires collaboration between different organizations and staff categories, where patients’ current needs and situations are the focus, without boundaries. Further research is needed to define or explain what MET entails or how it can be termed. Likewise, can physicians and nurses experience to meet patients emergency care needs at their homes provide valuable insights.

Data availability

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

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Acknowledgements

Acknowledgements The authors would like to express their deepest gratitude to the physicians and nurses who participated in this study. It was a privilege to take part in your daily work as well to listening to your thoughts on the research topic.

No funding was received for conducting this study. Open access funding was provided by the University of Borås.

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Authors’ contributions The study design was proposed by ÅF, GNB, HA and AS. The observation and interview guide were designed by ÅF, GNB, HA and AS and the observations and interviews were performed by ÅF. The data analysis and interpretation of data was performed by ÅF and further was discussed with UA and AS. ÅF drafted the manuscript, and AS and UA substantively revised it. All authors read and approved the submitted version of the manuscript.

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The study was approved by Swedish Ethical Review Authority in Stockholm (Approval Number: 2023-02186-01), and access to the research field was granted and formally approved by the managers of the participating facilities. All methods were carried out in accordance with regulations (e.g. Declaration of Helsinki). Other ethical considerations regarding data protection and data security were followed in accordance with the Swedish Data Protection Act.

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Falchenberg, Å., Andersson, U., Boysen, G.N. et al. Hybrid emergency care at the home for patients – A multiple case study. BMC Emerg Med 24 , 169 (2024). https://doi.org/10.1186/s12873-024-01087-7

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Research Suggests Urgent Care Centers Reduce Health Care Costs by Providing Alternative to Emergency Department

A new study published in HSR, an official journal of AcademyHealth, found that urgent care centers reduce costly emergency department (ED) visits, especially in areas with long ED wait times as well as among Medicaid enrollees and the uninsured.

Urgent care centers could substantially improve health care access and reduce costs, but few studies have estimated their effect on emergency department (ED) demand. This is important because care in these freestanding, non-emergency facilities is 10 times less expensive than the ED and previous research found that an estimated 36 million ED visits could be shifted to urgent care centers. One challenge in examining a causal relationship between urgent care centers and ED use is the lack of reliable data on the years that urgent care centers opened or closed in a given area.

A new study published this month in the journal HSR takes a novel approach to this issue by shifting the focus from years open to daily operating times of urgent care centers. In this way, the authors were able to find out how ED demand changes when they are open or when they are closed. Drawing from data on almost all urgent care centers in the U.S. and the largest collection of all-payer, encounter-level U.S. ED visit data , the study included 8.5 million visits made across six states from 2012 to 2013.

The team, led by Lindsay Allen, Ph.D., M.A., of Northwestern University, found that urgent care centers reduce costly ED visits, especially in areas with long ED wait times, and among Medicaid enrollees and the uninsured.

Across the six states studied, researchers found that the existence of an urgent care center in a zip code reduced the number of ED visits by about 17 percent. Multiplying the difference in costs between the two settings, the authors estimate that urgent care centers save about $3.3 billion annually. However, they note that this number does not consider other ways in which urgent care centers might offset those savings by, for example, encouraging new health care use or acting as a substitute for lower-cost primary care clinics.

The researchers also examined the results from the EDs with the longest wait times and found that urgent care centers reduced the number of visits to these EDs by nearly 80 percent. This finding has implications beyond the reduction of cost as shifting less urgent cases away from crowded EDs may relieve adverse outcomes such as increased mortality, hospital length of stay, and medication errors.

Researchers noted that the largest impacts of urgent care centers occurred among Medicaid enrollees and the uninsured. This is particularly noteworthy as these two groups use the ED for non-urgent conditions at higher rates, often because of insufficient access to other care settings, pointing to opportunities to both reduce health care costs and provide additional care access. Finally, using an algorithm to classify the urgency, preventability, and optimal care site of ED visit, the team found the largest reduction in non-urgent visits, which decreased by more than a quarter (27%), suggesting that urgent care centers are acting as an ED substitute during their hours of operation.  

Results of the study point to opportunities for greater investments in urgent care centers as a means of improving access to care and reducing health care costs, especially among patient populations that are more vulnerable to access barriers.

For more information on this study, please contact Lindsay Allen at [email protected].

September 17, 2024

New Hope for Treating People with Sickle Cell Disease

Improving sickle cell care by expanding treatment options, advancing new therapies and amplifying the voices of people with the disease

By Lauren Gravitz

Chiara Verchesi

This article is part of “ Innovations In: Sickle Cell Disease ,” an editorially independent special report that was produced with financial support from Vertex Pharmaceuticals .

The oldest known evidence of sickle cell disease has been traced back more than 7,000 years, and the illness was first described in medical literature more than a century ago. It was the first molecular disease to be understood, a single mutation in a single gene that causes a heritable illness. When someone has one copy of the mutated gene, the trait is often asymptomatic, but when someone inherits a copy from each parent, the disease can become excruciating. The mutation results in abnormal hemoglobin, which causes red blood cells to curve into a characteristic sickle shape and to become stiff and sticky; ultimately the sickled cells fail to deliver oxygen efficiently to tissues throughout the body. Untreated, the disease can cause sepsis, pneumonia, strokes and heart attacks, and it brings on the punishing pain that occurs when blood vessels are blocked during vaso-occlusive episodes.

The disease affects millions of people across the world—some estimates suggest as many as 20 million—but despite its historical significance and widespread incidence it remains underfunded, understudied and undertreated. Those with the disease in the U.S. benefit from screening and treatment from birth, which over the past 50 years has extended the average patient’s lifespan from 14 to 53 years. But people too often encounter a biased medical system that tends to mistrust their reports of extreme pain and accuse them of drug seeking. In the low-income countries where sickle cell is most prevalent and newborn screening for the disease is limited or nonexistent, too many children with sickle cell do not live past five years old.

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Patients, physicians, researchers and advocates are pushing for change. Some are expanding screening and treatment options in places such as sub-Saharan Africa, as technology has allowed for more accurate, portable options. Others are illuminating patient experience, showing sickle cell pain to be some of the most intense ever experienced and seeking new ways to both prevent it and alleviate suffering once it sets in. They are pursuing increased funding and new public health policies to ease the burden on low-income nations, to improve patients’ lives and to further genomic medicine research. And they are moving new therapeutics through the discovery pipeline and into clinics, where patients are just beginning to reap the benefits. Above all, they are lifting up the voices of people with sickle cell disease, who have been dismissed for far too long.

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September 16, 2024

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New figures indicate substantially higher future need for palliative care among people living with dementia

by King's College London

A new Research Letter published in Palliative Medicine estimates that the palliative care needs of people living with dementia in England and Wales will be much higher by 2040 than previous projections have indicated.

People with dementia can have severe symptoms and complex care needs throughout their illness, not just before death, which can benefit from palliative care. Specialist palliative care can also help with reducing the number of emergency department attendances and unplanned hospital admissions experienced by people with dementia.

The research was carried out as part of the Empowering Better End of Life Dementia Care ( EMBED-Care) program, which is jointly led by researchers at University College London and King's College London, and aims to improve care for people living and dying with dementia.

Using recently updated data on the number of people with dementia in England and Wales from Chen at al., 2023, the Research Letter found that the number of people with dementia in England and Wales who have palliative care needs is projected to substantially increase by 2040, from 274,000 to 399,000 using the most conservative scenario in which incidence of dementia declines over the next 20 years.

This number could be as high as 676,000 under a scenario where incidence of dementia increases over the next 20 years.

Most palliative care for people with dementia is provided by generalist health and care professionals, including GPs, community nurses and care home staff.

This new data indicates that the capacity for generalist and specialist palliative care for people with dementia needs to increase substantially in order to meet projected needs. The NHS will have to increase its palliative care provision in order to keep up with future demands.

These new projections are triple previous estimates of palliative care needs among people with dementia, which were based on mortality data, i.e., the number of people who had died with dementia, rather than the data on people living with dementia.

Projections of palliative care need based on mortality data showed that this number would be 131,645 by 2040 in England and Wales.

The new study finds that even if dementia incidence declines between 2018 and 2040, the number of people living with dementia who have palliative care needs will increase substantially.

Emel Yorganci, lead author and Research Associate at King's College London, says, "our projections show that the number of people living with dementia who have palliative care needs will substantially increase each year; much more than our previous predictions.

"The current health and social care systems, especially the primary and community care services as highlighted by the Darzi review, are not equipped to provide high-quality care and support to the increasing number of people with dementia and their families.

"The government must act now and prioritize investing in building health and social care systems and a workforce equipped to deliver palliative care to people affected by dementia in and out of hospitals."

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• Health Expect
• v.23(1); 2020 Feb

‘Clinically unnecessary’ use of emergency and urgent care: A realist review of patients' decision making

Alicia o'cathain.

1 School of Health and Related Research (ScHARR), University of Sheffield, Sheffield UK

Janice Connell

Joanne coster, associated data.

All data generated or analysed during this study are included in this published article and its Supporting Information files.

Demand is labelled ‘clinically unnecessary’ when patients do not need the levels of clinical care or urgency provided by the service they contact.

To identify programme theories which seek to explain why patients make use of emergency and urgent care that is subsequently judged as clinically unnecessary.

Realist review.

Papers from four recent systematic reviews of demand for emergency and urgent care, and an updated search to January 2017. Programme theories developed using Context‐Mechanism‐Outcome chains identified from 32 qualitative studies and tested by exploring their relationship with existing health behaviour theories and 29 quantitative studies.

Six mechanisms, based on ten interrelated programme theories, explained why patients made clinically unnecessary use of emergency and urgent care: (a) need for risk minimization, for example heightened anxiety due to previous experiences of traumatic events; (b) need for speed, for example caused by need to function normally to attend to responsibilities; (c) need for low treatment‐seeking burden, caused by inability to cope due to complex or stressful lives; (d) compliance, because family or health services had advised such action; (e) consumer satisfaction, because emergency departments were perceived to offer the desired tests and expertise when contrasted with primary care; and (f) frustration, where patients had attempted and failed to obtain a general practitioner appointment in the desired timeframe. Multiple mechanisms could operate for an individual.

Conclusions

Rather than only focusing on individuals' behaviour, interventions could include changes to health service configuration and accessibility, and societal changes to increase coping ability.

1. BACKGROUND

When people want health advice or treatment urgently, they seek it from a number of health services including emergency ambulance services, emergency departments, general practice out of hours services, daytime general practice, urgent care centres, walk‐in centres, minor injury units, dentists and 24 hour telephone health helplines. 1 The options available vary considerably between and within different countries. Concern has been expressed about high levels of demand for some of these services, specifically emergency ambulances, emergency departments and general practice. 2 , 3 These concerns sometimes focus on demand from patients who do not need the clinical resources or level of urgency of those services. These patients have been described variously as contacting emergency or urgent care services with minor, non‐urgent, non‐serious, medically unnecessary or low acuity problems, 4 , 5 , 6 or more pejoratively as ‘inappropriate users’ 7 In this article, we use the term ‘clinically unnecessary’ in recognition that health professionals view some users as not requiring the level of clinical care provided by their service and who could be treated effectively by a lower urgency service.

Understanding why patients make decisions that are judged clinically unnecessary is important because this may inform interventions to reduce demand for overloaded health services. However, it is also important to be aware that patient behaviour is only one part of the picture. The concept of clinically unnecessary use of health services is contentious. 8 , 9 Patients face a moral dilemma in help‐seeking, 10 anxious to take responsibility for their health whilst not being judged as wasting the time of a busy service. 11 Judgements about the clinical necessity of demand may be shaped by the supply of services, 8 where these judgements become harsher as demand outstrips supply. Staff judgements regarding legitimate reasons for service use may also vary between individual clinicians and individual services. 12

Existing evidence provides some insights into this complex issue. A recent rapid review of qualitative, quantitative and mixed methods studies primarily from the United States and the United Kingdom 13 identified six reasons for attendance at emergency and urgent care services: a lack of access to and confidence in primary care; perceptions of urgency or anxiety creating a need for reassurance from emergency services; recommendations to attend from friends or family or health‐care professionals; convenience in terms of services having better opening hours or being located closer to home than alternatives; patient factors such as lower cost than other options or lack of transport; and perceived need for treatment and investigations available at the hospital. Another recent systematic review, focusing more narrowly on reasons for self‐referral to emergency departments, identified a similar set of issues. 14 A systematic review of use of ambulance services for primary care‐sensitive conditions included the perspectives of health professionals and service managers as well as patients. 15 This found a somewhat different set of factors, albeit with some overlap with Coster et al 13 : poor physical health including comorbidities and mental health; personal anxiety and risk management; health knowledge; care givers and bystanders encouraging use of ambulances particularly for children; socio‐demographic and economic issues including deprivation and having no own transport; and poor access to primary care.

Whilst these systematic reviews provide valuable high‐quality evidence related to this issue, there is a need for a more in‐depth understanding of what drives patients to seek care urgently when it is clinically unnecessary. Existing reviews have focused on one service only, 14 , 15 included health professional as well as patient perspectives, 15 or addressed overall demand, including both clinically necessary and unnecessary use. 13 Therefore, there is a need to undertake an in‐depth review that focuses specifically on patients' perspectives of clinically unnecessary service use, to understand more about what drives them to seek care urgently, and attempts to gain a deeper understanding about the reasons for their decisions. Realist synthesis, which focuses on mechanisms that cause outcomes, and the contexts that shape these mechanisms and outcomes, could complement recent reviews by offering a more in‐depth understanding of patients' decision‐making processes. The aim of this review was therefore to use realist synthesis to identify patients' perspectives of why they make use of services providing emergency and urgent care that is judged clinically unnecessary.

2.1. Realist synthesis

Realist synthesis is used to understand complex social programmes that involve human decisions and actions. 16 Whilst it is usually used to explore how the outcomes of programmes or interventions are achieved, it has provided valuable insights outside the context of intervention research, including understanding access to primary care for socioeconomically disadvantaged older people in rural areas. 17 Due to the complexity of decision making, and our desire to understand the mechanisms driving clinically unnecessary use, we considered realist synthesis to be an appropriate approach for this study.

We identified our outcome of interest as the use of an emergency and urgent care service that was judged as clinically unnecessary. We then undertook the review in two phases. The first phase involved developing and refining a set of programme theories based on qualitative research. The second phase involved testing these programme theories using existing theories of health behaviour and identifying evidence to support or refute them in relevant quantitative studies. We registered the proposal with PROSPERO 2017:CRD42017056273. We used the RAMESES reporting guidelines. 16

2.2. Phase 1: Developing and refining the programme theories

2.2.1. initial theoretical framework.

In realist synthesis, the initial theoretical framework or rough programme theories can be identified in different ways. 18 The research team can draw on a combination of existing theories, published evidence and expert opinion. 18 We used published evidence from a recently completed rapid review of demand for emergency and urgent care 13 which offered a set of potential rough programme theories based on qualitative and quantitative research of all users of a range of emergency urgent care services. Because Coster et al's review 13 did not focus solely on patients judged to have made clinically unnecessary use of services, we used this review as an overarching theoretical framework rather than a source of rough programme theories.

2.2.2. Identification and selection of studies for inclusion

Realist synthesis does not necessarily limit itself to including only one study design but is adaptable to the particular context of the research. 16 In this instance, we developed our programme theories only using journal articles reporting qualitative research or qualitative components of mixed methods studies because these offered insights based on in‐depth exploration of patient perspectives. Because a number of substantive reviews had already been published 13 , 14 , 15 or were ongoing (Turnbull et al https://www.southampton.ac.uk/healthsciences/research/projects/a-study-of-sense-making-strategies-and-help-seeking-behaviours.page ), we searched for relevant papers included in these four reviews.

Coster et al 13 had searched MEDLINE, Embase, Cochrane Library, Web of Science and CINAHL 1995‐2016. Kraaijvanger et al 14 had searched MEDLINE, Embase, Cochrane Library, CINAHL and PubMed up to February 2015. Booker et al 15 had searched MEDLINE, Embase, PsycINFO, Web of Science and CINAHL 1980 to June 2014. Turnbull et al (ongoing at the time of our review) had searched policy and published research MEDLINE, Embase, Web of Science, CINAHL and PsycINFO 1990 to 2017; their search only included articles up to 2016 at the time they shared their database with us in February 2017. To bring this evidence up to date, in February 2017 we undertook searches of MEDLINE and Google Scholar for any further articles published between 2015 and 2016. Due to the lack of articles focusing on clinically unnecessary use of daytime general practice within the four reviews, in April 2017 we searched MEDLINE and Google Scholar for relevant general practice focused studies from the start of the databases to March 2017. Figure ​ Figure1 1 provides a summary of searches and the selection of studies. All included articles were written in English because this had been an inclusion criterion for the four reviews and the updated searches. Research from any country was included.

Summary of search, selection and extraction of articles

2.2.3. Quality appraisal and data extraction

Realist synthesis does not employ the formal quality assessment process undertaken within other evidence synthesis approaches. 16 The primary concern is the relevance of the material to the research question. Two researchers (JCon, JCos) screened each article reporting qualitative research for relevance in terms of its degree of focus on clinically unnecessary demand and its focus on patient perspectives. Where the explicit focus was on patients who were described as low triage category, low acuity, or using emergency care for an urgent, non‐urgent or primary care problem, we graded the article as 1 = directly relevant. Where the authors focused on a specific population sub‐group with the implication that they tend to make more clinically unnecessary use of services, we graded the article 2 = partially relevant. Articles focusing on frequent users of emergency departments were graded 2 because we felt that this group was a highly specific group within clinically unnecessary use and needed to be treated with care within the review. Articles exploring general demand for, or perceptions of, emergency and urgent care were graded 3 = not relevant and excluded. A third researcher (JL) checked the grading of each article identified as 1 or 2. Data extraction was undertaken by JCon and JL to produce a table documenting author, year, country, emergency/urgent care service, aim, data collection method, number and type of participants and key themes (Appendix S1 ). JL applied CASP quality criteria to included articles to consider the rigour of the included articles. We did not exclude articles based on rigour but instead identified articles where there were concerns about rigour and ensured that our programme theories did not rely solely on such articles as we developed and refined them.

2.2.4. Developing and refining programme theories

JCon, JCos and AOC read a small number of the qualitative research articles to identify context (C) and mechanism (M) chains for the outcome (O) of using a higher acuity service than necessary. We undertook duplicate data extraction on these articles and discussed CMO chains and potential programme theories. The mechanism was defined as the trigger or driver for the decision, arising from an ongoing contextual situation, and the outcome as the service they chose to contact. The articles considered decision making both in relation to whether to seek help from a service urgently and which service to then contact. It was often difficult to distinguish context and mechanism, 19 , 20 because there were multiple mechanisms, some of which were often contexts for further mechanisms.

After learning from this exercise, formal analysis started with articles on emergency departments before moving on to ambulance services, general practice and finally multiple services. In July 2017, JCon presented the initial CMO chains based on 14 emergency department articles to our wider project team for discussion. This project team consisted of researchers in emergency and urgent care, three public and patient involvement representatives, a general practitioner and an emergency department consultant. After this presentation JCon continued to develop and refine the programme theories based on the remaining articles. For each service, the focus was on articles rated relevance = 1 before moving on to those rated relevance = 2. JCon, JL and AOC continued to discuss the CMO chains until we finalized 10 detailed programme theories. We presented the programme theories at a health services research conference (July 2018) and to our wider project team which included four public and patient representatives (October 2018). The wider project team challenged us to be clearer about the specific mechanisms driving the need for urgency, and this led to further discussion through which we identified 6 underlying mechanisms within the 10 programme theories. Finally, we presented these 6 underlying mechanisms and 10 programme theories for discussion to the project advisory group where members had backgrounds in emergency department medicine, paramedic practice, health‐care commissioning, research in emergency and urgent care, policy making and patient and public involvement (October 2018).

2.3. Phase 2: Testing the programme theories

Testing programme theories where an intervention is not the focus of the review is challenging. We chose to test the programme theories in two ways. First, through testing their relationship with existing theory about health behaviour because these encompass in‐depth understanding of the wider area of health behaviour. Second, by seeing if the programme theories had been identified in quantitative studies and if patients identified as making clinically unnecessary use of services were more likely to exhibit aspects of these programme theories.

In September 2017, whilst the programme theories were under development and refinement, JL and AOC used two approaches to search for existing theories relating to the evolving programme theories. Where included qualitative articles made reference to relevant theoretical work (perceptions of risk, coping under stress, perceptions of service provision), these references were followed up by JL, who then identified further literature relating to these theories or models, including any research specific to clinically unnecessary use of emergency and urgent care. Where there were no or a few references within the included articles that related to an evolving programme theory (fear or anxiety, uncertainty, influence of family and friends), AOC and JL undertook Google searches to identify relevant theoretical literature, particularly anything focusing on clinically unnecessary use of emergency and urgent care. These searches identified a key article integrating three existing theories of how people respond to symptoms to understand help‐seeking and illness behaviour. 21

In September 2018, AOC returned to the 154 quantitative articles identified in the original searches (see Figure ​ Figure1), 1 ), the four articles excluded from Phase 1 because they were too quantitative (eg they reported qualitative research using percentages), and an extra relevant review identified in Google searches that had not been included in Phase 1. AOC screened these articles for relevance, that is identifying those focusing on clinically unnecessary use of services. AOC then undertook purposive sampling of different health services: ambulance, emergency department, paediatric emergency department/emergency department used for children, and general practice/mixed services. AOC ordered the articles about ambulance services by whether they were reviews or primary research and then by year of publication. AOC sampled recent reviews if these existed, and the most recent primary research articles. AOC repeated this process for articles about emergency departments, paediatric emergency departments and general practice. Because of the large number of articles on emergency departments, some sampling was also undertaken to include those with any emphasis on theory. There were only 3 relevant articles related to general practice so articles that were not directly relevant were included to offer further insights into this service. AOC extracted descriptive information for the 29 included articles (Appendix S1 ) and evidence supporting or refuting the 10 programme theories. The evidence consisted of cross‐sectional surveys of service users labelled as clinically unnecessary or comparisons of clinically unnecessary users with clinically necessary users.

2.4. Changes to original proposal

We made two changes to the original proposal. First, we did not undertake an appraisal of methodological rigour of all articles as planned. Not all realist reviews undertake methodological rigour. We focused on the rigour of the qualitative research used to develop and refine the programme theories because we wanted to ensure these were based on high‐quality research. Methodological rigour is not relevant to existing theory so we did not attempt to apply criteria to existing theories. Second, originally we planned to select 3‐6 rough programme theories to follow up but our evolving programme theories were interrelated and we considered them to be equally important and so followed up all 10 identified.

3.1. Description of the qualitative evidence base

32 articles reporting qualitative research were included: 18 were rated 1 ‘directly relevant’ and 14 were rated 2 ‘partially relevant’. The articles largely focused on emergency departments, either adult/mixed (16) or paediatric (7). Only two studies focused on ambulance services and four on general practitioner (GP) out of hours services. There were none from day time general practice. Articles were mainly from USA (12) and the UK (10), with others from continental Europe (5), Australia, Canada and the Caribbean. Almost all were from high income countries, although a number explored the perspectives of deprived communities within those countries. There was a wide variation in the health‐care service provision context, particularly in relation to payment for services through insurance or direct methods.

3.2. Underlying mechanisms for urgency

Figure ​ Figure2 2 provides an overview of the six underlying mechanisms for urgency of help‐seeking. The first was ‘risk minimization’ where patients sometimes felt that their symptom posed a potential risk to their health and sought health care quickly to minimize risk to themselves or others. Three programme theories shared this underlying mechanism. The second was ‘need for speed’ where patients were sometimes unwilling to wait for a routine appointment because they wanted the problem sorted out immediately. Three programme theories shared this underlying mechanism. The third was ‘low effort required for help‐seeking’ where patients sometimes accessed services which presented the lowest effort because their lives were complex or stressful. One programme theory had this underlying mechanism. The fourth was ‘compliance’ where patients sometimes followed the advice of trusted others about seeking help, or where to seek it from, rather than make a decision by themselves. Compliance is a term associated with following the advice of health professionals. We chose it here to also include following the advice of family or friends because some patients described doing what a family member told them to do as well as seeking advice from lay networks. One programme theory had this underlying mechanism. The fifth was ‘availability and quality of care’ where patients were sometimes attracted to attributes of emergency services. One programme theory had this underlying mechanism. The final one was ‘frustration with access to GP’, where patients sometimes felt frustrated because they could not get a GP appointment within their desired timeframe, or believed that it was not possible to obtain a GP appointment in a timely manner. One programme theory had this underlying mechanism.

Overview of contexts and mechanisms affecting use of emergency and urgent care

3.3. Programme theories

We identified ten 10 interrelated programme theories proposing explanations for patient behaviour (Figure ​ (Figure2). 2 ). We describe the programme theories in detail, along with the population subgroups associated with the programme theory (Table ​ (Table1). 1 ). We detail the qualitative evidence used to identify and refine each programme theory, links to existing theory, and the quantitative research used to test each programme theory (Table ​ (Table2 2 ).

Detailed programme theories

Evidence for each programme theory

4. DISCUSSION

4.1. summary of findings.

Six underlying mechanisms within 10 interrelated programme theories were identified to explain why patients made clinically unnecessary use of services providing emergency and urgent care: (a) need for risk minimization, caused by anxiety due to uncertainty about the seriousness of symptoms, by heightened anxiety due to past experiences of traumatic events, or by fear of consequences when making decisions about others, for example about children; (b) need for speed, caused by a need to return to normal to attend to responsibilities, a need for immediate pain relief, or because patients had waited for symptoms to improve and could wait no longer; (c) need for low treatment‐seeking burden, caused by inability to cope due to complex or stressful lives; (d) compliance, because family, friends or health services had advised such action; (e) consumer satisfaction, because emergency departments were perceived to offer the desired tests, expertise and ease of access when contrasted with primary care; (f) frustration, because patients had attempted and failed to obtain a GP appointment in the desired timeframe. It is likely that underlying mechanisms do not act in isolation but rather that a combination of mechanisms are likely to impact on an individual's care seeking behaviour. These programme theories were supported by existing theories on health behaviour and some were supported by quantitative evidence.

4.2. Context of other research

Some of the programme theories had been identified by the authors of the original reviews from which we drew our qualitative studies, although we were able to offer more understanding of how these issues affected people. In particular, uncertainty causing anxiety and the need to manage risk by getting reassurance 13 , 14 , 15 ; fear of consequences particularly around children and the bystanders' role in use of ambulances 15 ; stress and the need for low burden when seeking care in terms of social deprivation affecting ambulance use 15 ; compliance in terms of other people recommending or making the decision to contact a service, including service providers 13 , 14 , 15 ; consumer satisfaction in terms of positive views of emergency departments offering the expected investigations in a single place 13 , 14 , 15 and negative views of general practice due to lack of confidence in GPs 13 , 14 ; and frustration around access to primary care. 13 , 14 , 15 Some of our programme theories were also supported by research on general demand for emergency and urgent care. In particular, there was considerable support for the programme theory around poor access to GPs affecting use of emergency departments for the context of all users of emergency and urgent care rather than only clinically unnecessary use. Poor access to GPs was associated with higher use of emergency departments in numerous studies, including a large scale survey of GP patients in 31 countries. 22

Some programme theories were not highlighted by the original reviews, in particular: the role of previous traumatic events; the need to seek immediate pain relief; the need to return to normal in order to attend to responsibilities; and the role of self‐imposed delay in creating urgency. This identifies the added value of this realist review.

Our programme theories did not include some issues which have been identified elsewhere: awareness of services, 23 , 24 although only 3% of people reported this as an issue in one study 24 ; the convenience of the setting in terms of shorter distance to travel to an emergency department or GP out of hours service 14 , 24 , 25 , 26 , 27 ; health knowledge 15 ; geography in terms of rural and urban locations 28 ; not having a GP 29 ; patient misunderstanding of role of a service 9 , 29 ; the desire to take control through contacting a service 9 ; lower cost/financial considerations 14 ; and lack of transport. 13 , 15 These did not become programme theories because they did not appear strongly within the included qualitative literature of patients' perceptions of clinically unnecessary use. It may also be the case that there was subjective selection of issues within our study, although many detailed team discussions took place throughout our study to address this risk. Additionally, we did not have a programme theory around patients accessing emergency and urgent care because it was convenient, which was a key issue identified by other reviews and studies. 4 , 13 , 14 , 30 , 31 In our review, this factor may have been represented through our programme theories on the need to get back to normal quickly to attend to responsibilities, and the impact of stressful lives creating the need for low treatment‐seeking burden.

4.3. Strengths and limitations

A key strength of our study was the time and care spent developing and refining the programme theories based on qualitative research with patients. A further strength was linking programme theories to existing theories of health behaviour. A key limitation was testing the theories within comparative quantitative studies. Although these studies were available, they did not measure some issues related to our programme theories.

Our realist approach identified similar findings to previous reviews but went further by examining reasons behind findings, for example exploring why people felt anxious. It also identified a number of new issues such as the need for immediate pain relief and the impact of previous traumatic experiences. There were some limitations to the review. First, included articles in the review focused predominantly on emergency departments, with a particular gap around use of daytime general practice, which is the most common first point of contact for those seeking urgent care. 1 Second, the programme theories developed and refined here were based on qualitative interviews with patients who may present as ‘the rational me, the irrational other’ due to the moral dimension of help‐seeking behaviour, 8 perhaps making circumstances sound more rational and justified than they were in practice. However, it is important to understand these presentations, and our review provides valuable insights into how patients describe their decision making. Third, participants in the included studies were selected for interview based on numerous different definitions of ‘clinically unnecessary’ and were not a consistently defined group, as is the case in other reviews. The inconsistency in how non‐urgency has been assessed in different studies has led to proportions of clinically unnecessary use varying between 4.8% and 90% depending on the definition and context. 5 Fourth, the qualitative articles did not always offer enough detail to show how different issues interacted within individuals, or when a service was the first or last resort for interviewees. Finally, digital sources of health‐care advice are increasing in use and these did not feature in our findings possibly due to the age of the studies included.

4.4. Implications

The implications of our findings are that clinically unnecessary use of emergency and urgent care may be judged rational and reasonable once the details of each person's situation are understood. Indeed some of the research articles included here concluded that individuals appeared to behave rationally. 31 , 32 , 33 , 34 A potential intervention would involve education of policy makers and service providers in understanding patients' decision making. For example, if clinicians perceive that patients who have had symptoms for weeks do not require urgent care, then understanding that patients perceive they require urgent care precisely because they have had symptoms for a long time may change the judgements clinicians make. Having said this, in the context of demand outstripping the supply of many health services, a ‘population perspective’ rather than an ‘individual patient perspective’ suggests that interventions to change patients' practice may still be needed for the future sustainability of services.

A key finding was that service configuration and accessibility plays a key role in patients' decision making. Some patients try to take a route through the system of care that is commensurate with their clinical need by contacting their GP before attending an emergency department. However, it appears that GPs and other services (such as the urgent health‐care helpline NHS 111 operating in parts of the UK) advise patients to go to the emergency department, or patients are unable to obtain an appointment with a GP in their required time frame, or patients believe that they would not be able to obtain a timely GP appointment if they tried. Improving access to GPs might therefore alleviate some of the clinically unnecessary demand on emergency departments. Improving access to GPs might include increasing capacity in general practice. As highlighted in our review however, patients' decision making is driven by a complex interplay of mechanisms, and it is clear that improved GP access would not alleviate all clinically unnecessary demand because some patients feel strongly that they need the facilities offered by emergency departments, in particular X‐rays. Service reconfiguration may therefore be required in terms of offering X‐rays in places other than emergency departments.

A review of reviews of policy interventions to reduce use of emergency departments 35 did not focus specifically on clinically unnecessary demand but identified six types of interventions to manage all demand: cost sharing, strengthening primary care, pre‐hospital diversion including telephone triage, coordination, education and self‐management support, and imposing barriers to access to emergency departments. Evidence of effectiveness of these interventions was found to be insufficient. However, the review authors pointed out that the most opportunity for improvement lay with ‘inappropriate’ visits to emergency departments. They highlighted the potential for testing co‐location of GPs in emergency departments and telephone triage systems. Although education and self‐management support is included as a policy intervention, no mention is made of societal level issues that may lead to inability to cope with even minor health problems. If meaningful changes in service use for people in these circumstances is to take place, these issues may need to be addressed through wider public health interventions, such as reducing poverty, improving support for child care and reducing stress caused by not being able, or not feeling able, to take time off work to seek health care.

Finally, there are likely to be groups of people who are habitually labelled as seeking clinically unnecessary use of emergency and urgent care, for example people who have difficulty coping. It is also likely that any individual may be labelled as making clinically unnecessary use of emergency and urgent care at some point in their lives because a specific symptom or circumstance causes high levels of anxiety for example. Interventions will need to consider both of these scenarios.

There is a need for further research. First, there is a need to standardize the definition of low‐urgency for specific services. Second, there is a need to further test the programme theories developed here by measuring the extent to which they explain clinically unnecessary use of care. Our team is undertaking a population survey measuring the propensity of people to make clinically unnecessary decisions in the context of hypothetical vignettes, where the programme theories can be tested and the size of effect of each determined. Third, there is a need to explore how these programme theories interact within individuals through further qualitative research that pays specific attention to these interactions. Fourth, there is a need to identify and evaluate interventions to address these programme theories. Evaluation of interventions is essential because they may have adverse consequences such as increasing demand for health care overall, or failing to offer cost‐effective alternatives to current practice. Finally, there is a need to explore why primary care staff recommend attendance at an emergency department to some patients who contact them.

5. CONCLUSIONS

Multiple interventions may be needed to reduce clinically unnecessary use of emergency and urgent care. These are likely to include changes to health service configuration and accessibility, and patients' social circumstances, rather than simply focus on individuals' behaviour.

CONFLICT OF INTEREST

The authors declare that they have no conflicts of interest.

Supporting information

Acknowledgements.

Thanks to members of the wider team and project advisory group for participating in discussions about the findings.

O'Cathain A, Connell J, Long J, Coster J. ‘Clinically unnecessary’ use of emergency and urgent care: A realist review of patients' decision making . Health Expect . 2020; 23 :19–40. 10.1111/hex.12995 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]

PROSPERO 2017: https://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42017056273

This project was funded by the NIHR Health Services and Delivery Research (15/136/12). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. The funder did not play a role in the review.

DATA AVAILABILITY STATEMENT

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In her final hours, Amber Nicole Thurman suffered from a grave infection that her suburban Atlanta hospital was well-equipped to treat.

She’d taken abortion pills and encountered a rare complication; she had not expelled all of the fetal tissue from her body. She showed up at Piedmont Henry Hospital in need of a routine procedure to clear it from her uterus, called a dilation and curettage, or D&C.

But just that summer, her state had made performing the procedure a felony, with few exceptions. Any doctor who violated the new Georgia law could be prosecuted and face up to a decade in prison.

Thurman waited in pain in a hospital bed, worried about what would happen to her 6-year-old son, as doctors monitored her infection spreading, her blood pressure sinking and her organs beginning to fail.

It took 20 hours for doctors to finally operate. By then, it was too late.

Why should I trust your reporting?

I ( Kavitha Surana ) am a reporter that has been covering reproductive health care access since Roe v. Wade was overturned. I’ve spoken with doctors , community workers and patients across the country about how abortion bans have made pregnancy more dangerous in America, and I’ve written about the Republican lawmakers who refused to listen .

If you want to get in touch and learn more about how I work, email me . I take your privacy very seriously.

The otherwise healthy 28-year-old medical assistant, who had her sights set on nursing school, should not have died, an official state committee recently concluded.

Tasked with examining pregnancy-related deaths to improve maternal health, the experts, including 10 doctors, deemed hers “preventable” and said the hospital’s delay in performing the critical procedure had a “large” impact on her fatal outcome.

Their reviews of individual patient cases are not made public. But ProPublica obtained reports that confirm that at least two women have already died after they couldn’t access legal abortions and timely medical care in their state.

There are almost certainly others.

Committees like the one in Georgia, set up in each state, often operate with a two-year lag behind the cases they examine, meaning that experts are only now beginning to delve into deaths that took place after the Supreme Court overturned the federal right to abortion.

Thurman’s case marks the first time an abortion-related death, officially deemed “preventable,” is coming to public light. ProPublica will share the story of the second in the coming days. We are also exploring other deaths that have not yet been reviewed but appear to be connected to abortion bans.

Doctors warned state legislators women would die if medical procedures sometimes needed to save lives became illegal.

Though Republican lawmakers who voted for state bans on abortion say the laws have exceptions to protect the “life of the mother,” medical experts cautioned that the language is not rooted in science and ignores the fast-moving realities of medicine.

The most restrictive state laws, experts predicted, would pit doctors’ fears of prosecution against their patients’ health needs, requiring providers to make sure their patient was inarguably on the brink of death or facing “irreversible” harm when they intervened with procedures like a D&C.

“They would feel the need to wait for a higher blood pressure, wait for a higher fever — really got to justify this one — bleed a little bit more,” Dr. Melissa Kottke, an OB-GYN at Emory, warned lawmakers in 2019 during one of the hearings over Georgia’s ban.

Doctors and a nurse involved in Thurman’s care declined to explain their thinking and did not respond to questions from ProPublica. Communications staff from the hospital did not respond to multiple requests for comment. Georgia’s Department of Public Health, which oversees the state maternal mortality review committee, said it cannot comment on ProPublica’s reporting because the committee’s cases are confidential and protected by federal law.

The availability of D&Cs for both abortions and routine miscarriage care helped save lives after the 1973 Supreme Court ruling in Roe v. Wade, studies show, reducing the rate of maternal deaths for women of color by up to 40% the first year after abortion became legal.

But since abortion was banned or restricted in 22 states over the past two years, women in serious danger have been turned away from emergency rooms and told that they needed to be in more peril before doctors could help. Some have been forced to continue high-risk pregnancies that threatened their lives . Those whose pregnancies weren’t even viable have been told they could return when they were “crashing.”

Such stories have been at the center of the upcoming presidential election, during which the right to abortion is on the ballot in 10 states.

But Republican legislators have rejected small efforts to expand and clarify health exceptions — even in Georgia, which has one of the nation’s highest rates of maternal mortality and where Black women are three times more likely to die from pregnancy-related complications than white women.

When its law went into effect in July 2022, Gov. Brian Kemp said he was “overjoyed” and believed the state had found an approach that would keep women “safe, healthy and informed.”

After advocates tried to block the ban in court, arguing the law put women in danger, attorneys for the state of Georgia accused them of “hyperbolic fear mongering.”

Two weeks later, Thurman was dead.

Thurman, who carried the full load of a single parent, loved being a mother. Every chance she got, she took her son to petting zoos, to pop-up museums and on planned trips, like one to a Florida beach. “The talks I have with my son are everything,” she posted on social media.

But when she learned she was pregnant with twins in the summer of 2022, she quickly decided she needed to preserve her newfound stability, her best friend, Ricaria Baker, told ProPublica. Thurman and her son had recently moved out of her family’s home and into a gated apartment complex with a pool, and she was planning to enroll in nursing school.

The timing could not have been worse. On July 20, the day Georgia’s law banning abortion at six weeks went into effect, her pregnancy had just passed that mark, according to records her family shared with ProPublica.

Thurman wanted a surgical abortion close to home and held out hope as advocates tried to get the ban paused in court, Baker said. But as her pregnancy progressed to its ninth week, she couldn’t wait any longer. She scheduled a D&C in North Carolina, where abortion at that stage was still legal, and on Aug. 13 woke up at 4 a.m. to make the journey with her best friend.

On their drive, they hit standstill traffic, Baker said. The clinic couldn’t hold Thurman’s spot longer than 15 minutes — it was inundated with women from other states where bans had taken effect. Instead, a clinic employee offered Thurman a two-pill abortion regimen approved by the U.S. Food and Drug Administration, mifepristone and misoprostol. Her pregnancy was well within the standard of care for that treatment.

Getting to the clinic had required scheduling a day off from work, finding a babysitter, making up an excuse to borrow a relative’s car and walking through a crowd of anti-abortion protesters. Thurman didn’t want to reschedule, Baker said.

At the clinic, Thurman sat through a counseling session in which she was told how to safely take the pills and instructed to go to the emergency room if complications developed. She signed a release saying she understood. She took the first pill there and insisted on driving home before any symptoms started, Baker said. She took the second pill the next day, as directed.

Deaths due to complications from abortion pills are extremely rare. Out of nearly 6 million women who’ve taken mifepristone in the U.S. since 2000, 32 deaths were reported to the FDA through 2022, regardless of whether the drug played a role. Of those, 11 patients developed sepsis. Most of the remaining cases involved intentional and accidental drug overdoses, suicide, homicide and ruptured ectopic pregnancies.

Baker and Thurman spoke every day that week. At first, there was only cramping, which Thurman expected. But days after she took the second pill, the pain increased and blood was soaking through more than one pad per hour. If she had lived nearby, the clinic in North Carolina would have performed a D&C for free as soon as she followed up, the executive director told ProPublica. But Thurman was four hours away.

On the evening of Aug. 18, Thurman vomited blood and passed out at home, according to 911 call logs. Her boyfriend called for an ambulance. Thurman arrived at Piedmont Henry Hospital in Stockbridge at 6:51 p.m.

ProPublica obtained the summary narrative of Thurman’s hospital stay provided to the maternal mortality review committee, as well as the group’s findings. The narrative is based on Thurman’s medical records, with identifying information removed. The committee does not interview doctors involved with the case or ask hospitals to respond to its findings. ProPublica also consulted with medical experts, including members of the committee, about the timeline of events.

Within Thurman’s first hours at the hospital, which says it is staffed at all hours with an OB who specializes in hospital care, it should have been clear that she was in danger, medical experts told ProPublica.

Her lower abdomen was tender, according to the summary. Her white blood cell count was critically high and her blood pressure perilously low — at one point, as Thurman got up to go to the bathroom, she fainted again and hit her head. Doctors noted a foul odor during a pelvic exam, and an ultrasound showed possible tissue in her uterus.

The standard treatment of sepsis is to start antibiotics and immediately seek and remove the source of the infection. For a septic abortion, that would include removing any remaining tissue from the uterus. One of the hospital network’s own practices describes a D&C as a “fairly common, minor surgical procedure” to be used after a miscarriage to remove fetal tissue.

After assessing her at 9:38 p.m., doctors started Thurman on antibiotics and an IV drip, the summary said. The OB-GYN noted the possibility of doing a D&C the next day.

But that didn’t happen the following morning, even when an OB diagnosed “acute severe sepsis.” By 5:14 a.m., Thurman was breathing rapidly and at risk of bleeding out, according to her vital signs. Even five liters of IV fluid had not moved her blood pressure out of the danger zone. Doctors escalated the antibiotics.

Instead of performing the newly criminalized procedure, they continued to gather information and dispense medicine, the summary shows.

Doctors had Thurman tested for sexually transmitted diseases and pneumonia.

They placed her on Levophed, a powerful blood pressure support that could do nothing to treat the infection and posed a new threat: The medication can constrict blood flow so much that patients could need an amputation once stabilized.

At 6:45 a.m., Thurman’s blood pressure continued to dip, and she was taken to the intensive care unit.

At 7:14 a.m., doctors discussed initiating a D&C. But it still didn’t happen. Two hours later, lab work indicated her organs were failing, according to experts who read her vital signs.

At 12:05 p.m., more than 17 hours after Thurman had arrived, a doctor who specializes in intensive care notified the OB-GYN that her condition was deteriorating.

Thurman was finally taken to an operating room at 2 p.m.

By then, the situation was so dire that doctors started with open abdominal surgery. They found that her bowel needed to be removed, but it was too risky to operate because not enough blood was flowing to the area — a possible complication from the blood pressure medication, an expert explained to ProPublica. The OB performed the D&C but immediately continued with a hysterectomy.

During surgery, Thurman’s heart stopped.

Her mother was praying in the waiting room when one of the doctors approached. “Come walk with me,” she said.

Until she got the call from the hospital, her mother had no idea Thurman had been pregnant. She recalled her daughter’s last words before she was wheeled into surgery — they had made no sense coming from a vibrant young woman who seemed to have her whole life ahead of her:

“Promise me you’ll take care of my son.”

There is a “good chance” providing a D&C earlier could have prevented Amber Thurman’s death, the maternal mortality review committee concluded.

Every state has a committee of experts who meet regularly to examine deaths that occurred during or within a year after a pregnancy. Their goal is to collect accurate data and identify the root causes of America’s increasing maternal mortality rate , then translate those lessons into policy changes. Their findings and recommendations are sent to the Centers for Disease Control and Prevention, and their states publish an annual report, but their reviews of individual cases are never public.

Georgia’s committee has 32 regular members from a variety of backgrounds, including OB-GYNs, cardiologists, mental health care providers, a medical examiner, health policy experts, community advocates and others. This summer, the committee reviewed deaths through Fall 2022, but most states have not gotten that far.

After reviewing Thurman’s case, the committee highlighted Piedmont’s “lack of policies/procedures in place to evacuate uterus immediately” and recommended all hospitals implement policies “to treat a septic abortion on an ongoing basis.”

It is not clear from the records available why doctors waited to provide a D&C to Thurman, though the summary report shows they discussed the procedure at least twice in the hours before they finally did.

Piedmont did not have a policy to guide doctors on how to interpret the state abortion ban when Thurman arrived for care, according to two people with knowledge of internal conversations who were not authorized to speak publicly. In the months after she died, an internal task force of providers there created policies to educate staff on how to navigate the law, though they are not able to give legal advice, the sources said.

In interviews with more than three dozen OB-GYNs in states that outlawed abortion, ProPublica learned how difficult it is to interpret the vague and conflicting language in bans’ medical exceptions — especially, the doctors said, when their judgment could be called into question under the threat of prison time.

Take the language in Georgia’s supposed lifesaving exceptions.

It prohibits doctors from using any instrument “with the purpose of terminating a pregnancy.” While removing fetal tissue is not terminating a pregnancy, medically speaking, the law only specifies it’s not considered an abortion to remove “a dead unborn child” that resulted from a “spontaneous abortion” defined as “naturally occurring” from a miscarriage or a stillbirth.

Thurman had told doctors her miscarriage was not spontaneous — it was the result of taking pills to terminate her pregnancy.

There is also an exception, included in most bans, to allow abortions “necessary in order to prevent the death of the pregnant woman or the substantial and irreversible physical impairment of a major bodily function.” There is no standard protocol for how providers should interpret such language, doctors said. How can they be sure a jury with no medical experience would agree that intervening was “necessary”?

ProPublica asked the governor’s office on Friday to respond to cases of denied care, including the two abortion-related deaths, and whether its exceptions were adequate. Spokesperson Garrison Douglas said they were clear and gave doctors the power to act in medical emergencies. He returned to the state’s previous argument, describing ProPublica’s reporting as a “fear-mongering campaign.”

Republican officials across the country have largely rejected calls to provide guidance.

When legislators have tried, anti-abortion groups have blocked them .

In 2023, a group of Tennessee Republicans was unable to push through a small change to the state’s abortion ban , intended to give doctors greater leeway when intervening for patients facing health complications.

“No one wants to tell their spouse, child or loved one that their life is not important in a medical emergency as you watch them die when they could have been saved,” said Republican Rep. Esther Helton-Haynes , a nurse who sponsored the bill.

The state’s main anti-abortion lobbyist, Will Brewer, vigorously opposed the change . Some pregnancy complications “work themselves out,” he told a panel of lawmakers. Doctors should be required to “pause and wait this out and see how it goes.”

At some hospitals, doctors are doing just that . Doctors told ProPublica they have seen colleagues disregard the standard of care when their patients are at risk of infection and wait to see if a miscarriage completes naturally before offering a D&C.

Although no doctor has been prosecuted for violating abortion bans, the possibility looms over every case, they said, particularly outside of well-funded academic institutions that have lawyers promising criminal defense.

Doctors in public hospitals and those outside of major metro areas told ProPublica that they are often left scrambling to figure out on a case-by-case basis when they are allowed to provide D&Cs and other abortion procedures. Many fear they are taking on all of the risk alone and would not be backed up by their hospitals if a prosecutor charged them with a crime. At Catholic hospitals, they typically have to transfer patients elsewhere for care.

When they do try to provide care, it can be a challenge to find other medical staff to participate. A D&C requires an anesthesiologist, nurses, attending physicians and others. Doctors said peers have refused to participate because of their personal views or their fear of being exposed to criminal charges. Georgia law allows medical staff to refuse to participate in abortions.

Thurman’s family members may never learn the exact variables that went into doctors’ calculations. The hospital has not fulfilled their request for her full medical record. There was no autopsy.

For years, all Thurman’s family had was a death certificate that said she died of “septic shock” and “retained products of conception” — a rare description that had previously only appeared once in Georgia death records over the last 15 years, ProPublica found. The family learned Thurman’s case had been reviewed and deemed preventable from ProPublica’s reporting.

The sting of Thurman’s death remains extremely raw to her loved ones, who feel her absence most deeply as they watch her son grow taller and lose teeth and start school years without her.

They focus on surrounding him with love but know nothing can replace his mother.

On Monday, she would have turned 31.

Cassandra Jaramillo , Mariam Elba and Kirsten Berg contributed research.

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