Background
It is not uncommon for patients with advanced cancer to visit the emergency department at or near end-of-life.1-6 These emergency department visits, often due to exacerbations of advanced metastatic disease,1-3,7 happen at varying points in the cancer journey and precipitate a need for palliative care within the acute care setting. Emergency nurses play a key role on the emergency healthcare team, and as such, are at the heart of this challenging issue. The focus of this qualitative systematic review protocol and the prospective systematic review is palliative care of adults with advanced cancer provided by emergency department nurses. The significance of this meta-synthesis is rooted in emergency nursing care and how the culture of emergency nursing, historically embedded in the immediate and/or life-saving treatment of acute illness and trauma, transforms and adapts when the need for the provision of palliative care arises.8-11
Integral to the context of this systematic review are the various definitions and interpretations of the term palliative care that exist within current literature.8,10,12 The lack of consensus contributes to misunderstandings of palliative and the role it can play within the context of care delivery.12,13 The term end-of-life adds to this lack of conceptual clarity, as it differs in meaning from the term palliative care; however, the two terms are used interchangeably within current literature.12,13 Defining and differentiating between palliative care and end-of-life is key for precision and transparency in this qualitative systematic review. The Canadian Institute of Health Information defines end-of-life care as "care for people in decline who are deemed to be terminal or dying in the foreseeable (near) future".14(p.xii) This differs from the definition of palliative care, which focuses on enhanced quality of life. The World Health Organization (WHO)15(p.1) defines palliative care as "an approach that improves the quality of life of patients and their families [horizontal ellipsis] with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems".
Of further significance to the rising prevalence and scope of palliative care in the emergency department for those with advanced metastatic disease is the aging population, the increased incidence of chronic disease, as well as the advancements in life-prolonging medical interventions.7,16-18 For example, in 2010, Barbera and colleagues2 performed a descriptive, retrospective cohort study to identify reasons that patients with cancer visit the emergency department at end-of-life. In this study of patients in Ontario who died from cancer between the years 2002 and 2005, 76,759 patients made 194,017 emergency department visits during the last six months of their illness.2 The significance of these results is reinforced by similar results from other studies on emergency department visits for patients with cancer at end-of-life.1,19,20 Providing palliative care in the emergency department presents a unique challenge, and despite efforts to reduce emergency department visits, patients with advanced cancer continue to access the emergency department for care.1-6 For emergency department nurses, providing palliative care to adults with advanced cancer in the emergency department arises as important conversation and point of inquiry as it is known that increased emergency department visits for those with metastatic disease is an indicator of poor-quality end-of-life care.1,2,19 Current literature also identifies the unique role that emergency department nurses can play in shifting the focus from curative to palliative care,10,21-23 as well as the inevitability of emergency department nurses initiating advanced care discussions with this patient population.3,24 As such, role perception and the willingness to engage in end-of-life discussions becomes key for improving palliative care in the emergency department.10,22-26 The increasingly common phenomenon of palliative care in the emergency department is reported globally, including, but not limited to, areas such as Canada,2,7,20 the United States8,9,18 and Australia.3,6,10,12,27 A global initiative to achieve optimal palliative care for patients with cancer is recommended for all countries by the WHO; however, palliative care referrals remain largely underutilized in all areas of health care and are characteristically initiated late in the disease trajectory.28,29
Despite recognition of the emergency department as influential in the palliative care of patients with advanced cancer, there is little focus within the literature on the synthesis or consensus of the experiences of emergency nurses providing such care.16,21,23,26,30 For example, there is a body of literature on the qualitative perspectives of emergency department healthcare providers, highlighting the complexities of care, inclusive of barriers, facilitators, education needs and communication challenges.6,10,11,16,18,22,25-27,31 It is imperative that synthesis of the experiences of emergency department nurses caring for this unique subset of patients is completed as the complexities of providing palliative care to those with advanced disease in the emergency department are even further confounded by the difficulty inherent in trying to influence practice and policy changes using only of the results of single studies and the abundance of identified barriers. Examples of these barriers include the fast-paced emergency department environment being not conducive for palliative care, the emergency department design as a poor space for dying, as well as the need for further education on palliative care delivery in the emergency department.3,9,10,18,22,23,32 The Emergency Nurses Association33(p.1) corroborates this need, "since much of the care in the emergency setting is focused on lifesaving measures and urgent or immediate care, it can be challenging to change direction in the midst of a complex and chaotic environment to provide palliative and end-of-life care".
The aim of this qualitative systematic review is to synthesize current evidence on the experiences and perceptions of emergency department nurses providing palliative care to patients with advanced cancer. A systematic review of this nature would allow for an increased understanding of this phenomenon from a qualitative perspective, producing evidence-based knowledge that holds the potential to influence palliative care practices in the emergency department and consequentially, highlight areas in need of further research, as well as reveal opportunities for future practice and policy changes. Throughout this qualitative systematic review process, it is anticipated that a more comprehensive understanding of emergency department nurses' experiences in providing palliative care will be uncovered and assist in increasing awareness on the practice of palliative care in the emergency department for those living with advanced metastatic disease. A preliminary review of current literature in Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, PsycINFO, the Cochrane Library and the Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports revealed no systematic reviews that focused on this topic.
Inclusion criteria
Types of participants
This qualitative review will consider studies that include registered nurses working in emergency departments, inclusive of full- and part-time designations, as well as emergency nurses working in tertiary, regional and community-based hospitals. Specifically, this review seeks emergency department nurses who have experience providing palliative care to adults with advanced cancer within the emergency department setting.
Phenomena of interest
This review will consider studies that investigate the experiences and perceptions of emergency department nurses providing palliative care to patients with advanced cancer in the emergency department, regardless of the patient's length of stay or discharge destination.
Context
The context will be within the global setting of emergency departments, inclusive of tertiary, regional and community-based settings, with no limitation in geographical locations.
Types of studies
This review will consider studies conducted in English that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Both qualitative and mixed-methods studies that consider the experiences of emergency department nurses providing palliative care to adults with advanced cancer will be included. The use of mixed method studies will incorporate only the qualitative component if they are reported independently from quantitative findings. In the absence of research studies, other text such as opinion papers and reports will be considered. Examples include expert opinion text, discussion papers and position papers.
Search strategy
The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of CINAHL, PubMed, PsycINFO, Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports and Cochrane Databases of Systematic Reviews will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Third, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English will be considered for inclusion in this review. If a study is retrieved that appears relevant but is not written in English, the authors will be contacted to see if an English version is available. Studies published from the year 1995 onwards will be considered for inclusion in this review, as palliative care emerged as an area of research priority after publication of a seminal study on palliative care.34 This hallmark study received global attention and as such, elicited an abundance of research on patients with advanced disease at end-of-life and prompted changes in palliative practices across health care settings from this date forward.8,23
The databases to be searched include:
* CINAHL
* EMBASE
* PubMed
* PsycINFO
* Proquest Nursing and Allied Health Source
* Web of Science
* Scopus
The search for unpublished studies will include:
* Health on the Net
* ProQuest Digital Dissertations
* GrayLit Network
* GreySource
* Canadian Nurses Association
* Emergency Nurses Association
* National Emergency Nurses Affiliation
* Emergency Nurses Association of Ontario
* College of Emergency Nursing Australasia
* European Society for Emergency Nursing
* International Council of Nursing
Initial keywords to be used will be: nursing, emergency nursing, emergency department, experience, attitudes, values, beliefs, qualitative, palliative care, end-of-life, neoplasms, oncology, malignancy and metastases. Additional wordings/synonyms that are appropriate and correspond with initial keywords will be populated and used within the search.
The following is an example search to be performed in CINAHL database. Similar structures and headings will be used within the other included databases, based on their own unique database rulings.
CINAHL headings
Nurses, Emergency Nursing, Emergency Nurses Association, College of Emergency Nursing Australasia Ltd., Emergency Nurses Association, Palliative Care, Hospice and Palliative Nursing, Terminal Care, Terminally Ill Patients, Neoplasms, Oncologic Care, Nurse Attitudes, Emergency Service and Emergency Medical Services.
Key terms
nurs*, emergency nurs*, emergency department, experience, qualitative, palliative care, end-of-life, neoplasms, oncology, malignancy and metastases.
Assessment of methodological quality
Qualitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using the standardized critical appraisal instrument from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.
If no peer-reviewed research studies are retrieved, textual papers selected for retrieval will be assessed by two independent reviewers for authenticity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Narrative, Opinion and Text Assessment and Review Instrument (JBI-NOTARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer.
Data extraction
Qualitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the interventions, populations, study methods, and outcomes of significance to the review question and specific objectives. The authors of primary studies will be contacted for missing information or clarification of unclear data.
Textual data will be extracted from papers included in the review using the standardized data extraction tool from JBI-NOTARI (Appendix II). The data extracted will include specific details about the interventions, populations, study methods, and outcomes of significance to the review question and specific objectives.
Data synthesis
Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings (Level 1 findings) rated according to their quality, and categorizing these findings on the basis of similarity in meaning (Level 2 findings). These categories are then subjected to a meta-synthesis to produce a single comprehensive set of synthesized findings (Level 3 findings) that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in a narrative form.
Textual papers will, where possible, be pooled using JBI-NOTARI. This will involve the aggregation or synthesis of conclusions to generate a set of statements that represent that aggregation, through assembling and categorizing these conclusions on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the conclusions will be presented in a narrative form.
Acknowledgements
This systematic review protocol, as well as the corresponding systematic review, will contribute to a Master of Nursing degree at Dalhousie University for the main author.
Funding support has been received from Dalhousie University Faculty of Graduate Studies, Dalhousie University School of Nursing New Ventures Fund, the Canadian Nurses Foundation Nova Scotia Nurses Master's Award and a Trainee Award from the Beatrice Hunter Cancer Research Institute with funds provided by the Cancer Research Training Program and a CIBC Graduate Scholarship in Medical Research through Dalhousie University.
Appendix I: Appraisal instrument
QARI appraisal instrument
NOTARI appraisal instrument
Appendix II: Data extraction instrument
QARI data extraction instrument
NOTARI data extraction instrument
References