Free End of life care in emergency departments: a review of the literature
Kayla Gloss Acting clinical nurse unit manager, Emergency department, Camden and Campbelltown Hospitals, Campbelltown, NSW Australia
Providing end of life care (EOLC) in emergency departments (EDs) is challenging because of minimal resources, lack of staff education and outdated models of care. Dynamic, chaotic environments like EDs require systematic, clear and concise principles and goals for patient care. Death in EDs is inevitable, therefore staff should be equipped to provide optimal care to this vulnerable patient group. This article reviews the literature on the barriers to providing EOLC in EDs, and makes recommendations for clinical practice and further research. EOLC refers to care of terminally and critically ill patients in their final days and hours of life.
Emergency Nurse. 25, 2, 29-38. doi: 10.7748/en.2017.e1707Correspondence
This article has been subject to an external double-blind peer review and checked for plagiarism using automated softwareConflict of interest
Received: 26 February 2017
Accepted: 08 March 2017
Published: 12 May 2017
Emergency departments (EDs) are dynamic, chaotic and fast-paced environments, which provide rapid intervention and care to individuals or groups who have experienced sudden trauma or acute injury/illness (Decker et al 2015). It is challenging for staff to provide optimal end of life care (EOLC) in these environments. Advances in medicine means people are living and managing chronic illness, for longer (Forero et al 2012). As EOLC becomes more prevalent in the community, ED staff are seeing increasing numbers of patients who require this type of care (Bradley et al 2013). This highlights the need to review EOLC practices in EDs and to identify areas for improvement, to support reorientation of resources and implementation of innovative models of care.
Therefore, a literature review was undertaken to assess the evidence on EOLC in EDs; determine and discuss the barriers to its provision; and highlight areas for improvement and future research.
Palliative and EOLC are major health priorities worldwide, in response to ageing populations, and improvements in managing chronic illness and co-morbidities (Russ et al 2015). Current practice requires a major overhaul to deliver innovative and quality care to a particularly vulnerable group of patients and their families and it makes sense to get the basics right from patients’ first point of contact, which is often EDs (Norton et al 2011, Stepanov et al 2011). The challenge for EDs is to change the mindset of staff who are used to highly intensive resuscitation scenarios and trauma management. There is ambiguity about the ability of ED staff to swiftly recognise when treatment is futile and further invasive intervention is inappropriate (Solberg and Hincapie-Echeverri 2015, George et al 2016).
The Institute of Medicine (IOM) (1997) defines a ‘decent’ or good death as ‘one that is: free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards.’ It is vital to understand, when providing EOLC, that comfort takes precedence and patients must be allowed ‘a good death’ with dignity (IOM 1997).
An increase in the complexity of presentations suggests there is a need for a standardised model of EOLC for patients in EDs, which allows attention to detail and offers a streamlined, individualised approach to care, to ensure a good death (Forero et al 2012, Hogan et al 2016). Death and dying are inevitable and important aspects of nursing, and staff should receive relevant and sufficient education and ongoing support in their daily practice (Fassier et al 2016).
It is important to consider the needs of each person, as not all patients who require EOLC are known palliative patients with documented advanced care directives, or not for resuscitation orders (Mierendorf and Gidvani 2014). Life and death decisions about resuscitation, or withdrawal of active treatment for critically ill patients, occur every day in EDs and raise moral and ethical issues for clinicians (Leraci 2013). The Royal College of Emergency Medicine (2015) best practice guidelines suggest that, initially, a goal for prolonging quality of life is acceptable. However, clinicians should be proactive in recognising that reducing suffering and symptom control, without rushing the dying process, is often more realistic.
Patients might present to EDs following traumatic or unexpected events, such as a motor vehicle accident or cardiac arrest, and treatment might be unsuccessful. These patients are actively dying, and deserve the comfort and supportive holistic measures encompassed by EOLC. Other patients might present with end-stage chronic conditions, such as respiratory failure, renal disease, cardiac failure, or neurological and autoimmune conditions, such as stroke, dementia, multiple sclerosis and motor neurone disease. If patients are diagnosed as actively dying, then an individualised approach should be taken to ensure they receive appropriate, supportive care that provides comfort and dignity, as well as respecting their wishes (Paterson et al 2009, Bailey et al 2011, Basol et al 2015).
The Australasian College of Emergency Medicine (2016) found that up to 80% of people want to die at home, but only about 20% achieve this. Therefore, ED staff have an important role to play in coordinating EOLC for patients at home, if that is their wish. For ED staff to be efficient patient advocates they must have the appropriate skills and resources to provide individualised EOLC and, if possible, help to coordinate and prioritise transfer of care to patients’ homes, nursing homes, respite facilities or other locations of their choice.
The literature search used the ‘patient, population, or problem, intervention factor, comparison or intervention (if appropriate), outcome’ (PICO) (Schardt et al 2007) formula to create a clinical question:
» P - Patients who are terminally ill and present to EDs.
» I - End of life care in EDs.
» C - Not applicable.
» O - Improvements in patient care.
An electronic search of Science Direct, CINAHL, PubMed, Medline and Scopus databases was conducted using key terms, including end of life care and emergency department. No date range was set, but articles were limited to full text, scholarly and peer reviewed. These were screened for relevance, and all study design types were included.
Articles were included if they were published in English, reviewed EOLC in relation to EDs, and/or discussed barriers, improvements and initiatives for EOLC in EDs. Grey literature, including EOLC policies in EDs, government publications and best practice guidelines were also included. Editorials and letters to the editor were excluded, as were articles on intensive care or ward-based units and those that were paediatric focused. Figure 1 illustrates the inclusion and screening process.
All articles included in the review were read thoroughly and several main themes emerged as barriers to, and enablers of, provision of optimal EOLC in EDs. Areas for further research and reorientation of current models of care were also identified.
The barriers identified are:
Discussion – barriers to EOLC in EDs
This literature review focuses on the barriers to EOLC in EDs, to outline where improvements and restructuring of resources are needed to achieve gold standard practice. It also highlights direction for future research to improve the standard of care provided to terminally ill patients and their families at the most critical time in their lives.
Poor ED design
Several studies identified that the design of EDs hinders optimal EOLC. EDs are loud, chaotic, fast-paced environments that lack privacy for patients and grieving families (Mierendorf and Gidvani 2014, Decker et al 2015, Hogan et al 2016). Staff recognise that a ‘quiet room’ for families and loved ones is beneficial, as it offers a private area where they can grieve and discuss their situation (Beckstrand et al 2012), but these rooms are uncommon in EDs, and are not seen as a priority (Basol et al 2015). Conversely, quiet rooms tend to separate families from their loved ones, which is distressing for both parties and can contribute to disjointed care and communication breakdown between staff and patients, and patients and families (Heaston et al 2006, Chan et al 2010).
Some studies suggest creating an area or bed space in EDs that is big enough to provide the privacy of a single room and enables families to spend quality time with their dying loved one (Bradley et al 2013). This would allow them to grieve without being subjected to the chaos of the surroundings (Bradley et al 2013, Basol et al 2015, Tse et al 2016).
Poor ED design can also be distressing for staff. Hogan et al (2016) and Beckstrand et al (2012) found that staff in resuscitation areas find it difficult to switch from one end of the care spectrum – where there is a sense of urgency to provide advanced life support – to the other, which requires them to give their full attention and compassion to patients requiring EOLC. Patients and families receiving EOLC in resuscitation areas are likely to hear what is happening to others, which can be distressing, particularly if resuscitation is successful (Bailey et al 2011, Heaston et al 2006, Grudzen et al 2012).
Lack of communication was identified as the biggest obstacle to providing EOLC in EDs by most of the studies reviewed. This issue is multifaceted and communication breakdown was highlighted in almost all interactions between ED staff and patients, families, each other and colleagues across the organisation, including inpatient palliative care teams, social workers and chaplains (Allmark and Tod 2009, Bradley et al 2013, Russ et al 2015, Hogan et al 2016). Effective communication is vital to provide optimal EOLC in EDs. However, there appears to be a deficit in practice, and communication breakdown affects most interactions (Lane et al 2014).
Communication breakdown between ED staff and palliative inpatient teams, or primary care physicians, seems to be widespread and all parties report hostility and obstinacy (Smith et al 2009, Lane et al 2014, Granero-Molina et al 2016). This could be a result of inpatient teams’ lack of understanding of EDs and the competing priorities that emergency staff face.
Many ED clinicians acknowledge that EOLC is not their area of expertise and seek advice from specialist palliative care teams to try to ensure quality care provision (Grudzen et al 2013, Hogan et al 2016). When criticism is received from inpatient teams, ED staff become reluctant to ask for advice or consultation, which can have a domino effect across decision making, or result in avoidance of decision making, further anxiety for patients and families, and unclear care goals (Alderidge et al 2016, Granero-Molina et al 2016).
Families have reported negative experiences of communication. This might be secondary to a lack of understanding of hospital processes, or of their loved one’s wishes, or could be a result of the shock they feel if their loved one’s deterioration is sudden and unexpected (Bailey et al 2011). However, ED staff need to understand that they can rectify misconceptions and relieve families’ and patients’ anxieties. EDs can be chaotic environments, and it is likely that this is the first encounter clinicians have had with a patient and their family.
Spending an extra ten minutes with families supports disclosure and helps to develop therapeutic relationships. This can encourage them to ask questions, which results in a better understanding of individual treatment plans and expected outcomes. This open communication helps patients and families feel included in decision-making processes and care delivery (Chan et al 2010, Grudzen et al 2012, Hogan et al 2016).
Low nurse-to-patient ratios and high workload
Multiple qualitative studies acknowledge that high workload in EDs, combined with sub-optimal patient/staff ratios, makes it challenging for nurses to dedicate extended time to patients who require EOLC (Bradley et al 2013, Russ et al 2015, Granero-Molina 2016). Nursing staff believe that patients in their final days and hours require and deserve extra time, consistency and compassion in a holistic and uninterrupted manner (Russ et al 2015). ED medical and nursing staff, inpatient palliative care teams and social workers, are required to support and educate patients and their families at this time (Fassier et al 2016), and staff believe that it is critical to spend time with patients to ensure they feel important (Chan et al 2010, Ka-ming Ho 2016).
However, staff shortages, and the needs of other patients, limits clinicians’ ability to develop therapeutic relationships with those receiving EOLC and their families (Lane et al 2014), while lack of time results in lack of communication. Families might be reluctant to ask questions or raise concerns when they see that staff are busy and might feel they are a burden (Beckstrand et al 2012, George et al 2016).
Lack of education
Some studies reveal that staff feel confident in managing people’s pain, signs and symptoms, but that there are educational deficits in the legal and ethical aspects of EOLC and communication strategies (Allmark and Tod 2009). Several studies identified a strong desire in staff for specialist education, including workshops or simulations so that they can practise difficult conversations with patients and families to prepare for real events.
Lack of education for patients and families is also a barrier to EOLC. Various studies identified that ED staff are aware of the importance of educating families and patients about expectations and goals in relation to care, but most are reluctant to initiate these conversations, possibly because of their own knowledge deficit (Beckstrand et al 2012, Russ et al 2015, Ka Ming Ho 2016).
In terms of supportive behaviours to aid optimal EOLC in EDs, staff perceive that specialist education days or seminars would enhance and consolidate their skills (Alderidge et al 2016, Rojas et al 2016), and recognise that ongoing education is critical to ensuring optimal patient care (Basol et al 2015). According to Shearer et al (2014), however, there do not seem to be many of these types of education days, possibly because other training programmes, such as advanced life support and resuscitative care, are regarded as a priority and more relevant to EDs (Forero et al 2012).
This suggests that attitudes to, and prioritisation of, education and training in EDs must be reconsidered to ensure that EOLC is included. It also illustrates the need for further investigation and implementation of EOLC initiatives in EDs, as staff have identified a deficit in their knowledge, yet little has been done to address this (Basol et al 2015, Rojas et al 2016).
Patient care pathways
Patient care pathways help clinicians recognise high-risk patients and support standardised approaches to care (Castner et al 2013). However, their use in the context of EOLC is questionable. The most widely known is the Liverpool Care Pathway (LCP), which was developed in the 1990s to support delivery of quality and equitable EOLC (Paterson et al 2009, George et al 2016).
The LCP was heavily criticised in an independent review (Neuberger et al 2013), which concluded that although it provided a good framework for EOLC, it was not applied appropriately across organisations, which resulted in poor outcomes for patients and their families.
The review recommended that rather than using a generic pathway, an individualised approach to EOLC should be adopted, based of a set of standards or goals for patient care (Neuberger 2013). Similarly, Watts (2013) concluded that innovative practices, such as EOLC pathways and individualised care plans, were good models of care, but warned that their psychosocial effects on patients and their families should be further explored. Sleeman et al (2015) supports the need for further research, and suggests accurate and successful implementation of EOLC pathways relies on the quality of education and support provided to staff.
Earlier, Glajchen et al (2011) suggested there might be a place for EOLC pathways that are facility-specific, and based on principles or goals for care, rather than encouraging generic ‘tick-a-box’ behaviours. ED executives must be vigilant in monitoring such pathways, to ensure they are used appropriately.
Staff in EDs tend to use algorithms, pathways and flow charts because they offer systematic, evidence-based information in time-sensitive situations, improve patient flow and promote positive patient outcomes (Paterson et al 2009, Glajchen et al 2011, Castner 2013).
There are well-evidenced benefits of using patient care pathways, for example in managing people with sepsis, acute coronary syndromes and stroke thrombolysis. They streamline high standards of care, reduce inconsistencies, improve patient access to care and key performance indicators, and enhance patient outcomes (Watts 2012, Sleeman et al 2015).
However, in critical environments like EDs, staff could become complacent about using patient care pathways, which risks losing these resources’ intended individuality and could be detrimental to vulnerable patient groups, such as those receiving EOLC. Although it is challenging to achieve, EOLC must be individualised to meet the needs of each patient and their family, regardless of the state of the ED (Fassier et al 2016).
There is much literature on staff’s perceptions of the barriers to EOLC in EDs, but limited work on clinical initiatives and innovative models of care that improve practice.
The deficit in research made it difficult to critique ED EOLC practice extensively. It is notable that, over the past ten years, little has changed in terms of staff’s perspectives and barriers, which might signify a deficit in high-quality research of effective strategies to resolve these issues, and construct innovative models of care. Further research on the implementation and effect of initiatives is required to develop innovative models of care and achieve sustained, optimal EOLC in EDs.
The following recommendations for clinical practice and future research are derived from this literature review:
» Specialist training and education in EOLC as a holistic practice, including ethical and legal considerations, should be made available to ED staff.
» Staff should have access to education to enhance their communication techniques, and initiatives that encourage effective professional communication across all specialties should be introduced.
» Innovative models of care that support individualised, holistic EOLC for patients and their families, in their final days and hours, should be developed.
» Further research of nurse to patient ratios when providing EOLC in EDs should be undertaken, and ED executive teams should consider the appropriate allocation of patients who are receiving EOLC in EDs, for example ensuring a single room is available with appropriate staffing.
» Research and consideration of the effect of ED design on patients receiving EOLC should be undertaken.
» Further high-level evidence-based research on EOLC initiatives in EDs should be conducted.
EOLC in EDs is frequently discussed, and staff perceptions are well documented. However, little has been done over the past decade to improve clinical practice and delivery of optimal care to this vulnerable patient group (Wolf et al 2015).
Further research is required to develop innovative models of end of life care and improve patient experience.
Alderidge M, Hasselaar J, Garraida E et al (2016) Education, implementation and policy barriers to greater integration of palliative care: a literature review. Palliative Medicine. 30, 3, 224-239.
Allmark P, Tod A (2009) End of life care pathways: ethical and legal principles. Nursing Standard. 24, 14, 35-39.
Australasian College for Emergency Medicine (2016) Policy on End of Life and Palliative Care in the Emergency Department. acem.org.au/getattachment/4da3ff25-a793-44fd-abe5-285c6db2e811/P455-Policy-on-End-of-Life-and-Palliative-Care-in.aspx (Last accessed: 4 April 2017.)
Bailey C, Murphy R, Porock D (2011) Trajectories of end-of-life care in the emeregency department. Annals of Emergency Nursing. 57, 4, 362-369.
Basol N, Celenk Y, Okan I (2015) Thoughts of emergency physicians about palliative care: evaluation and awareness. The Journal of Academic Emergency Medicine. 14, 75-78.
Beckstrand R, Smith M, Heaston S et al (2008) Emergency nurses’ perceptions of size, frequency and magnitiude of obstacles and supportive behaviours in end-of-life care. Journal of Emergency Nursing. 34, 4, 290-299.
Beckstrand R, Wood D, Callister L et al (2012) Emergency nurses’ suggestions for improving end-of-life care obstacles. Journal of Emergency Nursing. 38, 5, 7-14.
Bradley V, Burney C, Hughes G (2013) Do patients die well in your emergency department? Emergency Medicine Australasia. 25, 334-339.
Castner J, Grinslade S, Guay J et al (2013) Registered nurse scope of practice and ED compliant specific protocols. Journal of Emergency Nursing. 39, 5, 467-473.
Chan R, Webster J, Bowers A (2010) End-of-Life Care Pathways for Improving Outcomes in Caring for the Dying. Cochrane Database of Systematic Reviews. onlinelibrary.wiley.com/doi/10.1002/14651858.CD008006.pub2/abstract (Last accessed: 4 April 2017.)
Decker K, Lee S, Morphet J (2015) The experiences of emergency nurses in providing end-of-life care to patients in the emergency department. Australasian Emergncy Nursing Journal. 18, 1, 68-74.
Fassier T, Valour E, Colin C et al (2016) Who am I to decide whether this person is to die today? Physicians’ life or death decisions for elderly critically ill patients at the emergency department-ICU interface: a qualitative study. Annals of Emergency Medicine. 68, 1, 28-39.
Forero R, McDonnell G, Gallego B et al (2012) A literature review on care at the end-of-life in the emergency department. Emergency Medicine International. 486516, 1-11.
George N, Phillips E, Zaurova M et al (2016) Palliative care screening and assessment in the emergency department. Journal of Pain and Symptom Management. 51, 1, 108-119.
Glajchen M, Lawson R, Homel P et al (2011) A rapid two-stage screening protocol for palliative care in the emergency department: a quality improvement initiative. Journal of Pain and Symptom Management. 42, 5, 657-662.
Granero-Molina J, Diaz-Cortès M, Hernandes-Padilla J et al (2016) Loss of dignity in end-of-life care in the emergency department: a phenomenological study with health professionals. Journal of Emergency Nursing. 42, 3, 233-239.
Grudzen C, Richardson L Hopper S et al (2012) Does palliative care have a future in the emergency department? Discussions with attending emergecny physicians. Journal of Pain and Symptom Management. 43, 1, 1-9.
Grudzen C, Richardson L, Major-Monfried H et al (2013) Hospital administrators’ views on barriers and oppportunities to delivering palliative care in the emergency department. Annals of Emergency Medicine. 61, 6, 654-660.
Heaston S, Beckstrand R, Bond E et al (2006) Emergency nurses’ perceptions of obstacles and supportive behaviours in end-of-life care. Journal of Emergency Nursing. 32, 6, 477-484.
Hogan K, Fothergill-Bourbonnais F, Brajtman S et al (2016) When someone dies in the emergency department. Journal of Emergency Nursing. 42, 3, 207-212.
Institute of Medicine (1997) Approaching Death: Improving Care at the End of Life. National Academy Press, Washington DC.
Ka-Ming Ho J (2016) Resuscitation versus end-of-life care: exploring the obstacles and supportive behaviours to providing end-of-life care as perceived by emergency nurses after implementing the end of life care pathway. Applied Nursing Research. 29, 1, 7-13.
Lane H, Well J, Jelinek A et al (2014) Ideal care and the realities of practice: interdisciniplinary relationships in the management of advanced cancer patients in Australian emergency departments. Support Care Cancer. 22, 1, 1029-1035.
Leraci S (2013) Palliative care in the emergency department. Emergency Medicine Australasia. 25, 112-115.
Limehouse W, Feeser R, Bookman K et al (2012) A model for emergency department end-of-life communications after acute devastating events: moving from resuscitative to end-of-life or palliative treament. Academic Emergency Medicine. 19, 11, 1300-1308.
Marck A, Lane H, Welland T et al (2014) Care of the dying cancer patient in the emergency department: findings from a national survey of Australian emergency department clinicians. Internal Medicine Journal. 44, 4, 362-368.
Mierendorf M, Gidvani V (2014) Palliative care in the emergency department. The Permanente Journal. 18, 2, 77-85.
National Health and Medical Research Council (2009) Additional Levels of Evidence and Grades for Recommendations for Developers of Guidelines.www.nhmrc.gov.au/_files_nhmrc/file/guidelines/developers/nhmrc_levels_grades_evidence_120423.pdf (Last accessed: 4 April 2017.)
Neuberger J, Guthrie C, Aaronovitch D et al (2013) More Care, Less Pathway: A Review of the Liverpool Care Pathway. www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients (Last accessed: 4 April 2017.)
Norton C, Hobson G, Kulm E (2011) Palliative and end-of-life care in the emergency department: guidelines for nurses. Journal of Emergency Nursing. 37, 3, 240-245.
Paterson B, Duncan R, Conway R et al (2009) Introduction of the Liverpool Care Pathway for end-of-life care to emergency medicine. Emergency Medicine. 26, 11, 777-779.
Rojas E, Schultz R, Linsalata H et al (2016) Implementation of a life-sustaining management and alternative protocol for actively dying patients in the emergency department. Journal of Emergency Nursing. 42, 3, 201-206.
Royal College of Emergency Medicine (2015) End of Life Care for Adults in the Emergency Department. portal.rcem.ac.uk/LIVE/docs/College%20Guidelines/5u.%20End%20of%20Life%20Care%20for%20Adults%20in%20the%20ED%20(March%202015).pdf (Last accessed: 4 April 2017.)
Russ A, Mountain D, Rogers I et al (2015) Staff perceptions of palliative care in a public Australian metropolitan emergency department. Emergency Medicine Australasia. 27, 287-294.
Schardt C, Adams M, Owens T et al (2007) Utilization of the PICO framework to improve searching PubMed for clinical questions. BMC Medical Informatics and Decision Making. 16, 7, 1-9.
Shearer F, Rogers I, Monterosso L et al (2014) Understanding emergency department staff’s needs and perceptions in the provision of palliative care. Emergency Medicine Australasia. 26, 249-255.
Sleeman K, Koffman J, Bristowe K et al (2015) It doesn’t do the care for you: a qualitative study of health care professionals’ perceptions of the benefits and harms of integrated care pathways for end-of-life care. BMJ Open. 5, 9, 1-7.
Smith A, Fisher J, Schonberg M et al (2009) Am I doing the right thing? Provider perspectives on improving palliative care in the emergency deparment. Annals in Emergency Nursing. 14, 1, 86-93.
Solberg L, Hincapie-Echeverri J (2015) Palliative care in the emergency department. Critical Care Nursing Clinics of North America. 27, 3, 355-368.
Stepanov N, Quinn K, Philip J et al (2011) End of Life Care and Care Pathways in Victoria: Report and Recommendations, Centre for Palliative Care. http://docshare01.docshare.tips/files/26209/262094937.pdf (Last accessed: 4 April 2017
Tse J, Hung M, Pang S (2016) Emergency nurses’ perceptions of providing end-of-life care in a Hong Kong emergency department: a qualitative study. Journal of Emergency Nursing. 42, 3, 224-232.
Watts T (2012) Initiating end-of-life care pathways: a discussion paper. Journal of Advanced Nursing. 68, 10, 2359-2370.
Watts T (2013) End-of-life care pathways and nursing: a literature review. Journal of Nursing Management. 21, 47-57.
Wolf L, Delao A, Perhats C et al (2015) Exploring the management of death, emergency nurses’ perceptions of challenges and facilitators in the provision of end-of-life care in the emergency department. Journal of Emergency Nursing. 41, 5, 23-27.
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