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Article in Press: Nurses' Perceptions of Dealing With Death in The Emergency Department

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G Model

COLEGN-715; No. of Pages 10 ARTICLE IN PRESS


Collegian xxx (2020) xxx–xxx

Contents lists available at ScienceDirect

Collegian
journal homepage: www.elsevier.com/locate/coll

Nurses’ perceptions of dealing with death in the emergency


department
Adam Geracea,b,∗ , Tracey Gilesb , Katrina Breadenb , Karen Hammadb ,
Christine Drummondc , Sandra L. Bradleyb , Eimear Muir-Cochraneb
a
School of Health, Medical and Applied Sciences, Central Queensland University, 44 Greenhill Rd., Wayville, South Australia, 5034, Australia
b
College of Nursing and Health Sciences, Flinders University, Sturt Rd., Bedford Park, South Australia, 5042, Australia
c
Central Adelaide Palliative Care Service, 28 Woodville Rd., Woodville South, South Australia, 5011, Australia

a r t i c l e i n f o a b s t r a c t

Article history: Background: Providing end-of-life care to patients and their families in the emergency department (ED) is
Received 15 May 2019 challenging, with high workloads, the busy environment, and a focus on providing lifesaving treatments
Received in revised form 1 June 2020 to patients at odds with providing end-of-life and palliative care.
Accepted 5 June 2020
Aim: The purpose of this study was to investigate nurses’ experiences of providing end-of-life care in
Available online xxx
EDs, including their perceptions of the most vital elements of care, ability to provide aspects of care, as
well as perceptions of their role, communication processes, family presence/involvement, and the ED
Keywords:
environment.
Emergency nursing
End-of-life care
Methods: Nurses (n = 211) working in Australian EDs for at least 12 months completed an anonymous
Family presence online survey.
Sudden death Findings: Nurses identified vital elements of care for dying patients including adequate pain control and
a move away from burdensome treatments, sensitive care of families and family access to loved ones,
and a quiet environment. However, nurses were not always able to provide such care to their patients.
Often, the ED was seen as an unsuitable place for end-of-life care or care of families once the patient had
died, and communication between staff and between staff and families was challenging.
Discussion: The ED physical environment, lack of staff training and debriefing, and lack of time to commu-
nicate with family, particularly after death, may compromise nurses’ ability to provide end-of-life care
that is satisfying to them, their patients, and families.
Conclusion: There is a need for focus on the ED physical environment, staff training, and consideration of
the emotional experiences of frontline nurses caring for patients at the end of life.
© 2020 Australian College of Nursing Ltd. Published by Elsevier Ltd.

1. Introduction a diagnosis of a terminal illness) and seek medical treatment and


palliative services within the ED setting, even if they do not subse-
Caring for patients who die in the emergency department (ED) quently die there (Bailey, Murphy, & Porock, 2011, p. 1371). Indeed,
is an important priority for clinical and research attention. Between with an increasing ageing population in both Australia and over-
1 July 2017 and 30 June 2018, 4911 people died in Australian EDs seas, more people with complex comorbidities will also present to
(Australian Institute of Health & Welfare, 2018b). Nearly 90% of EDs and subsequently die in this setting (Australian Commission
these people were triaged, using the Australian Triage Scale (ATS), on Safety & Quality in Health Care, 2013; Decker et al., 2015).
at the highest categories (i.e., requiring resuscitation [ATS 1] or Nurses are responsible for providing the bulk of end-of-life (EOL)
emergency attention within 10 min [ATS 2]; Australian Institute of care and, as such, “are on the front line of caring for dying patients
Health & Welfare, 2018a). However, not all patients who die in the and their families” (Beckstrand, Wood, Callister, Luthy, & Heaston,
ED have ‘unexpected’ or ‘sudden’ deaths (e.g., because of an acci- 2012, p. e8). However, evidence regarding nurses’ perceptions and
dent). Patients may be on “known dying trajectories” (e.g., through experiences regarding EOL care in Australian EDs is generally lack-
ing. The purpose of this study was to examine what ED nurses
believe are the vital components of EOL care in the ED and the
extent to which they feel able to provide these elements to their
∗ Corresponding author at: Tel.: +61 8 8378 4537.
patients.
E-mail address: a.gerace@cqu.edu.au (A. Gerace).

https://doi.org/10.1016/j.colegn.2020.06.002
1322-7696/© 2020 Australian College of Nursing Ltd. Published by Elsevier Ltd.

Please cite this article in press as: Gerace, A., et al. Nurses’ perceptions of dealing with death in the emergency department. Collegian
(2020), https://doi.org/10.1016/j.colegn.2020.06.002
G Model
COLEGN-715; No. of Pages 10 ARTICLE IN PRESS
2 A. Gerace et al. / Collegian xxx (2020) xxx–xxx

et al., 2014). However, there is a lack of research that examines more


Summary of relevance general perceptions and experiences of Australian ED nurses pro-
Problem or issue viding EOL care, including what they prioritise as important versus
There is limited evidence regarding how nurses provide end- what they are able to do. This lack of research is apparent in relation
of-life care to patients who die in the ED and their families.
to both deaths in the ED due to an acute event (e.g., an accident)
What is already known
and deaths that occur as a result of a life-limiting or terminal illness,
Care of the dying in the ED is challenging, and nurses deal with
high workloads, a noisy and busy environment, and a focus on which may still be sudden and unexpected (Wolf et al., 2015). Also,
lifesaving treatments rather than end-of-life care. less investigated are other facets of EOL care such as communica-
What this paper adds tion between nurses and doctors in the ED (Heaston et al., 2006).
Nurses experience disconnect between what they would like Therefore, the aim of this study was to examine nurses’ perceptions
to provide their patients and what they are able to do in the of their practice and their attitudes towards various aspects of EOL
ED. However, they also identify aspects of this emotionally care for people who die in the ED.
demanding work that they can do well, as well as suggestions
for improved ED end-of-life care.
2. Methods

2.1. Design
1.1. Background

A descriptive survey design, utilising an anonymous online


EDs are generally neither staffed nor designed to care for dying
survey through the SurveyMonkey platform (SurveyMonkey Inc.,
patients (Australian Commission on Safety & Quality in Health
San Mateo, CA, USA), was used for this study. The research team
Care, 2013). In a recent integrative review of 16 papers published
adapted, with permission, the Heaston et al. (2006) Survey of Emer-
between 1990–2017 examining clinician and carer experiences of
gency Nurses Perceptions of End-of-Life Care, aligning it to the
death and dying in EDs, the authors suggested that the main theme
Australian context. Relevant literature guided the survey develop-
of these studies was “the idea that the emergency department is
ment and modification (e.g., Australian Commission on Safety &
a place where the focus is on living rather than dying” (McCallum,
Quality in Health Care, 2013, 2015; Marck et al., 2014; Beckstrand,
Jackson, Walthall, & Aveyard, 2018, p. 114). Indeed, in an Australian
Callister, Kirchhoff, 2006; Bailey et al., 2011b; Shearer, Rogers,
study, 64.6% of surveyed nurses and doctors ‘strongly agreed’ that
Monterosso, Ross-Adjie, & Rogers, 2014). An expert panel (four
many dying patients receive treatment in the ED that is unlikely to
ED nurses and three ED doctors) reviewed the modified survey
benefit them (Marck et al., 2014). This belief may be due to ED clin-
for inclusiveness and clarity regarding elements of EOL care, with
icians generally prioritising lifesaving interventions over EOL care,
suggested changes incorporated into the final survey.
even when the patient’s prognosis is dire (Australian Commission
The final survey tool consisted of a series of questions presented
on Safety & Quality in Health Care, 2013; Bailey, Murphy, & Porock,
in five sections. The first section consisted of 12 elements of EOL
2011).
care (e.g., providing care for the family after the patient has died).
Despite care of dying patients being in some ways out of place in
Respondents were asked to indicate (a) whether they believed the
the emergency setting (Bailey et al., 2011a), ED nurses and physi-
element was a vital component of caring for patients who die
cians do view EOL care as a part of their role (Marck et al., 2014).
in the ED, and (b) whether they were able to frequently do or
However, they also identify resource and staffing limitations (Tse
enable the element. The other four sections consisted of statements
et al., 2016), and characteristics of the ED environment such as
regarding (2) communication (11 items); (3) staff roles (10 items);
noise, lack of privacy, and limited time to talk with family mem-
(4) family presence (10 items); and (5) environment and systems
bers, as being at odds with the patient experiencing a ‘good death’
(11 items), with respondents asked to indicate their agreement
(Decker, Lee, & Morphet, 2015). Healthcare professionals also feel
with each statement. For questions in all five sections, a 5-point
underprepared to deliver EOL care in the ED or comfort bereaved
Likert-type response scale, ranging from 1 (Strongly disagree) to
family members, and educational preparation regarding EOL care
5 (Strongly agree) was utilised. Respondents also completed a
often varies between nurses (McCallum et al., 2018; Wolf et al.,
series of demographic and clinical practice (e.g., experience) ques-
2015). For example, staff may be reluctant for family members to
tions. Respondents were required to complete each question to
be present during aspects of care such as cardiopulmonary resusci-
progress through the survey. Open-ended questions, which were
tation (CPR). This is despite research that reveals few differences
not mandatory, relating to perceptions of EOL care pertaining to
or better psychological outcomes for family members who wit-
the five sections in the survey and suggestions for practice were
ness resuscitation attempts compared to those who do not/are not
also included. In this paper, we focus on two questions that were
given that option (Compton, Levy, Friffin, Waselewsky, Mango, &
asked at the end of the survey, “What do you think is the most
Zalenski, 2011; Jabre et al., 2014; Pasquale et al., 2010).
important thing health professionals can do when providing care
Even when nurses feel equipped to provide EOL care to their
to a person who is likely to die in the ED?” and “What do you think is
patients, they identify significant negative emotions involved
the most challenging aspect of providing care for patients who are
when dealing with dying, death, and family bereavement (Hogan,
likely to die in the ED?” Responses to other questions are reported
Fothergill-Bourbonnais, Brajtman, Phillips, & Wilson, 2016; Wolf
in another paper (Giles et al., 2019).
et al., 2015). Nurses also perceive their lack of training in dealing
with family grief and distress, as well as having to deal with family
anger, as potential obstacles to their provision of EOL care (Heaston, 2.2. Respondents
Beckstrand, Bond, & Palmer, 2006; Ho, 2016). More generally,
person-centred approaches utilised by nurses in other settings, Nurses were recruited into the study via emails to members of
such as ongoing communication, compassion, and time to spend two professional bodies: College of Emergency Nursing Australasia
with patients and their families may be difficult to achieve in the (CENA) and Australian Nursing and Midwifery Federation (ANMF).
fast-paced ED environment (Beckstrand et al., 2012; McConnell, Recruitment flyers were also posted on relevant professional social
McCance, & Melby, 2016). media websites. To be eligible to participate, nurses had to be cur-
There have been previous Australian studies on providing EOL rently working in an Australian ED, having worked in that setting for
care in specific contexts such as for patients with cancer (e.g., Marck a minimum of 12 months, and had cared for at least one patient who

Please cite this article in press as: Gerace, A., et al. Nurses’ perceptions of dealing with death in the emergency department. Collegian
(2020), https://doi.org/10.1016/j.colegn.2020.06.002
G Model
COLEGN-715; No. of Pages 10 ARTICLE IN PRESS
A. Gerace et al. / Collegian xxx (2020) xxx–xxx 3

died in that setting. These criteria were set to ensure that respon- Table 1
Respondent demographic information (n = 211)
dents had experience in caring for a patient who died in the ED.
Since the study was largely aimed at understanding nurses’ per- Demographic n (%)
spectives, was of a descriptive design, and did not involve the use of Gender
inferential statistics, a power analysis to determine minimum num- Female 186 (88.15)
ber of respondents required was not undertaken. Instead, attempts Male 23 (10.90)
were made to recruit as many respondents as possible. Potential Other 1 (0.47)
Do not want to disclose 1 (0.47)
respondents were provided with a URL that directed them to an
Age
information sheet and the survey. The survey was online from 23 18–25 10 (4.74)
May-30 September 2017. 26–35 68 (32.23)
36–45 53 (25.12)
46–55 61 (28.91)
2.3. Ethics approval
56–65 18 (8.53)
66+ 1 (0.47)
Flinders University Human Research Ethics Committee (Project Highest qualification
Number 7627; approval date: 30 May 2017) approved the study. Diploma 11 (5.21)
Respondents were informed in the information letter that com- Bachelor’s degree 60 (28.44)
Graduate certificate 13 (6.16)
pleting and submitting their survey responses indicated consent.
Graduate diploma 52 (24.64)
Honours degree 7 (3.32)
2.4. Data analysis Master’s degree 51 (24.17)
Master’s degree (nurse practitioner) 7 (3.32)
PhD 4 (1.90)
Data were analysed using IBM SPSS Statistics for Windows,
Other 6 (2.84)
Version 24.0 (IBM Corp., Armonk, NY, USA). Descriptive statistics Years in profession
(frequencies, means, standard deviations, ranges) were used to Less than 1 year 3 (1.42)
examine respondent perceptions of their practice and attitudes 1–5 years 31 (14.69)
towards providing care to dying patients and their families. Spear- 6–10 years 44 (20.85)
11–15 years 31 (14.69)
man correlation coefficients were used to examine the relation of
16–20 years 24 (11.37)
respondents’ beliefs about the importance of EOL components to 21–25 years 28 (13.27)
the frequency with which they are able to practice these compo- 26–30 years 15 (7.11)
nents in their ED work. For the open-ended questions, responses 31–35 years 22 (10.43)
were collapsed into categories that allowed sufficient explanation 36–40 years 6 (2.84)
41 years+ 7 (3.32)
of respondents’ (typically short) reflections. When a respondent Years in ED setting
mentioned multiple factors in response to the question, each factor Less than 1 year 7 (3.32)
was included in the respective category to which it belonged. 1–5 years 53 (25.12)
6–10 years 48 (22.75)
11–15 years 42 (19.91)
3. Results
16–20 years 23 (10.90)
21–25 years 18 (8.53)
The sample consisted of 211 nurses who submitted a completed 26–30 years 7 (3.32)
survey. Table 1 presents respondent demographics, while Table 2 31–35 years 11 (5.21)
36–40 years 2 (0.95)
details their work settings. The majority of the respondent sample
were female (88.15%). Respondents worked predominantly within
a Level 3 (ED within a major regional, metropolitan or urban hos-
during CPR/resuscitation; recognising a patient is dying/likely to
pital; 45.02%) or Level 4 (ED within a multifunctional tertiary or
die; ensuring adequate pain/symptom control; keeping patient
major referral hospital; 31.28%) ED (see Australasian College for
and/or family informed; and providing emotional/spiritual support
Emergency Medicine, 2012). All Australian states and territories
to the patient.
were represented in the sample. Most respondents indicated their
role involved direct patient care (68.23%) or a mixture of direct care
and management responsibilities (26.54%). A minority of respon- 3.2. Perceptions of colleague and staff-family communication
dents (22.27%) had completed further education in EOL or palliative
care (e.g., workshops, continuing professional development ses- Respondents generally believed that nurses and doctors com-
sions, in-service education, and massive open online courses). municated openly with each other about EOL care although,
according to respondents, nurses’ and doctors’ perspectives on EOL
3.1. Importance and frequency of EOL care components care such as when to stop life-saving measures did not always align.
Respondents also believed that while families were generally likely
Table 3 presents responses regarding how vital the 12 elements to tell staff about their loved one’s EOL wishes, families were some-
of EOL care are for patients who die in the ED and how frequently what less likely to ask questions about EOL care options and keep
nurses felt that they were able to undertake or enable each par- other family members informed about their loved one’s condition.
ticular element in their work. For all 12 elements, respondents In spite of this, respondents indicated they were very comfortable
indicated that while they considered the element vital in EOL care, in involving family in shared decision-making regarding EOL care.
they were less frequently able to undertake or enable the element of For their own practice, respondents were comfortable talking to
care. For six of the items, ratings of importance and frequency were the patient and family about impending death (see Table 4).
significantly positively correlated (i.e., the stronger a respondent
agreed with the statement that the element was vital, the more they 3.3. Perceptions of staff roles
agreed they were frequently able to enact the element), although
correlations were small to moderate in strength. Significant corre- Respondents believed caring for both patients who die in the
lations for perceptions of importance and frequency were: having ED and, to a lesser extent, their families were reasonable expecta-
family present while the patient is dying; having family present tions of their role. They were also comfortable in caring for patients,

Please cite this article in press as: Gerace, A., et al. Nurses’ perceptions of dealing with death in the emergency department. Collegian
(2020), https://doi.org/10.1016/j.colegn.2020.06.002
G Model
COLEGN-715; No. of Pages 10 ARTICLE IN PRESS
4 A. Gerace et al. / Collegian xxx (2020) xxx–xxx

including transitioning from providing lifesaving treatment to EOL Table 2


ED work setting details
care, but were less comfortable in supporting relatives once the
patient had died. However, while respondents felt comfortable in ED details n (%)
their roles, they were less likely to agree that they had adequate Type of EDa
training to provide EOL care to patients and their families (see Level 1 22 (10.43)
Table 5). Level 2 28 (13.27)
Level 3 95 (45.02)
Level 4 66 (31.28)
3.4. Perceptions of family presence
State/territory
New South Wales 60 (28.43)
Respondents strongly agreed that dying patients should always Queensland 46 (21.80)
have family members present, and they agreed that families should Victoria 45 (21.33)
South Australia 23 (10.90)
have unlimited access to patients. However, for patients undergo-
Western Australia 23 (10.90)
ing resuscitation/CPR, they indicated that, while family members Australian Capital Territory 6 (2.84)
were sometimes present during resuscitation/CPR, there was inad- Tasmania 4 (1.90)
equate room for their presence. Respondents were ambivalent as Northern Territory 4 (1.90)
to whether family presence was appropriate or not, or if they Geographical location
Metropolitan 110 (52.13)
felt comfortable to have family present during resuscitation/CPR;
Regional 70 (33.18)
respondents also did not strongly feel that doctors and nurses Rural 27 (12.80)
agreed on family presence during resuscitation/CPR. Respondents Remote 4 (1.90)
were also measured in their beliefs as to whether family presence Role in ED
Mostly direct patient care 144 (68.25)
during resuscitation/CPR is beneficial for the patient and family (see
Mostly management 9 (4.27)
Table 6). Mixture of direct care and management 56 (26.54)
Other 2 (0.95)
3.5. Perceptions of ED environment Further education in EOL/palliative care
Yes 47 (22.27)
No 164 (77.73)
Respondents felt that the ED environment was not a suitable
Care of patients who died in last 12 months
place for dying patients and that these patients should be trans- 1–5 times 123 (58.29)
ferred out of the ED setting. They indicated that their EDs were 6–10 times 64 (30.33)
unlikely to have a designated area/room for dying patients and their 11–20 times 20 (9.48
20+ times 4 (1.90)
families. Respondents also felt they did not have enough time to
a
care for patients who die in the ED and their families, but neither Level 1 = ED within a designated area of remote or rural hospital; Level 2 =
disagreed nor agreed that they prioritised treatment of patients ED part of secondary hospital able to manage some complex cases and offer some
sub-specialties; Level 3 = ED within major regional, metropolitan or urban hospital,
undergoing lifesaving treatments over these patients. Furthermore,
able to manage most complex cases and offer some sub-specialties; Level 4 = ED
respondents strongly agreed that it was easier to provide care to within large, multifunctional tertiary or major referral hospital able to manage wide
dying patients in the ED setting who had an Advance Care Directive range of complex conditions, and offer significant level of sub-specialty services
or plan. (Australasian College for Emergency Medicine, 2012).
While respondents felt it was valuable to debrief with other staff
after a patient had died, this debriefing was more often informal
with colleagues, rather than a formal process (see Table 7). the same page”. Often family was the focus of respondent answers,
perhaps owing to many patients being at a stage where they are
3.6. Important and challenging aspects of EOL care unable to be involved. One nurse suggested that it was important
to remember, “Often the patient is unconscious, but the family is not”.
Almost 90% (n = 187) of respondents answered the open-ended Indeed, while family being involved was implied in many responses
questions, “What do you think is the most important thing health by references to open and honest communication with them, spe-
professionals can do when providing care to a person who is likely cific “family presence” was highlighted (n = 10) as important as the
to die in the ED?” and “What do you think is the most challenging patient neared the end of life, although presence during CPR was
aspect of providing care for patients who are likely to die in the seen to be potentially traumatising to family members.
ED?”. Most respondents limited their responses to a discrete factor Related to open and respectful communication were nursing
(e.g. “Private quiet room”), but some respondents reflected multi- skills and attributes, such as empathy, kindness, compassion, lis-
ple elements of care. For example, one nurse believed that it was tening, and being there for the patient and their family (n = 33),
important to “Place the patient in a private room as far away from “If able, speak to the patient and followAdvanceCareDirective. Pro-
noise as possible . . . allowing as many family members as need be to vide empathy and dignity. Educate and offer support to family about
visit, offering the use of staff phones for family to make calls and,most the dying process so they know what to expect”. From respondents’
important,respecting patients’wishes and providing them adequate perspectives, it was important to consider “What does the patient
treatment”. Another nurse reflected, “Make the person comfortable want?”, “Put themselves in thefamily’sshoes. Think, ‘what if that was
and [ensure] that they have their needs met. If appropriate, have fam- a relative?’”, and “Provide compassionate care; care which we would
ily involved. Involve the social worker and,if appropriate,a chaplain or be happy to receive if it were our loved ones”.
other support person to assist with other non-medical concerns”. Another commonly mentioned factor (n = 43) involved provid-
The most commonly identified important factors (n = 60 ing the patient with timely medication and comfort measures, so
responses were coded as involving these factors) involved attend- that they were as pain free as possible. Example responses included,
ing to and involving the patient and family in the EOL care process, “Providing adequate comfort measures is vital”, “ensure that they
communicating honestly and with respect, and allowing them to know we will do everything to keep them pain free and comfortable”,
ask questions. Responses included “be open and honest”, “Explain and “Making sure they are comfortable (e.g. pain relief, positioning,
to patient what is happening”, “Explain things [to family] more than supporting their breathing), and trying to have their family/support
once, as it is most likely they haven’t taken anything in the first time”, persons present”. Indeed, it was acknowledged (n = 11) that there
and “Have everyone know what is expected and have everyone on needed to be a move away from lifesaving procedures to elements

Please cite this article in press as: Gerace, A., et al. Nurses’ perceptions of dealing with death in the emergency department. Collegian
(2020), https://doi.org/10.1016/j.colegn.2020.06.002
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COLEGN-715; No. of Pages 10 ARTICLE IN PRESS
A. Gerace et al. / Collegian xxx (2020) xxx–xxx 5

Table 3
Perceptions of importance of and frequency of enacting components of EOL care

Item Strongly Disagree n (%) Neither Agree n (%) Strongly agree M (SD) rs
disagree n (%) disagree nor n (%)
agree n (%)

(1) Recognising patient is


dying/likely to die
Vital component 11 (5.21) 0 (0.00) 1 (0.47) 43 (20.38) 156 (73.93) 4.58 (.94)
.29***
Frequently able to do 3 (1.42) 7 (3.32) 18 (8.53) 117 (55.45) 66 (31.28) 4.12 (.80)
(2) Avoiding burdensome
investigations/treatments
Vital component of care 4 (1.90) 2 (0.95) 5 (2.37) 57 (27.01) 143 (67.77) 4.58 (.76)
.08
Frequently able to do 12 (5.69) 71 (33.68) 40 (18.96) 69 (32.70) 19 (9.00) 3.06 (1.12)
(3) Ensuring adequate
paint/symptom control
Vital component of care 4 (1.90) 1 (0.47) 1 (0.47) 30 (14.22) 175 (82.94) 4.76 (.67) .19**
Frequently able to do 5 (2.37) 32 (15.17) 24 (11.37) 89 (42.18) 61 (28.91) 3.80 (1.09)
(4) Knowing/following patient
EOL wishes
Vital component of care 5 (2.37) 1 (0.47) 2 (0.95) 38 (18.01) 165 (78.20) 4.69 (.74)
.01
Frequently able to do 15 (7.11) 49 (23.22) 38 (18.01) 78 (36.97) 31(14.69) 3.29 (1.18)
(5) Keep patient/family
informed
Vital component of care 3 (1.42) 0 (0.00) 1 (0.47) 37 (17.54) 170 (80.57) 4.76 (.60)
.18**
Frequently able to do 3 (1.42) 19 (9.00) 33 (15.64) 100 (47.39) 56 (26.54) 3.88 (.95)
(6) Providing
emotional/spiritual patient
support
Vital component of care 1 (0.47) 0 (0.00) 4 (1.90) 54 (25.59) 152 (72.04) 4.69 (.56)
.14*
Frequently able to do 2 (0.95) 48 (22.75) 41 (19.43) 75 (35.55) 45 (21.33) 3.54 (1.09)
(7) Having family present
during CPR/resuscitation
Vital component of care 10 (4.74) 17 (8.06) 48 (22.75) 76 (36.02) 60 (28.44) 3.75 (1.10)
.30**
Frequently able to do 9 (4.27) 41 (19.43) 61 (28.91) 75 (35.55) 25 (11.85) 3.31 (1.05)
(8) Having family present
while patient dying
Vital component of care 3 (1.42) 1 (0.47) 9 (4.27) 21 (9.95) 177 (83.89) 4.74 (.69)
.35***
Frequently able to do 1 (0.47) 6 (2.84) 16 (7.58) 81 (38.39) 107 (50.71) 4.36 (.78)
(9) Providing
peaceful/dignified
environment once patient died
Vital component of care 3 (1.42) 1 (0.47) 4 (1.90) 31 (14.69) 188 (81.52) 4.74 (.66)
.12
Frequently able to do 21 (9.95) 55 (26.07) 27 (12.80) 63 (29.86) 45 (21.33) 3.27 (1.32)
(10) Providing care for family
leading up to death
Vital component of care 2 (0.95) 2 (0.95) 4 (1.90) 63 (29.86) 140 (66.35) 4.60 (.67)
.02
Frequently able to do 9 (4.27) 66 (31.28) 48 (22.75) 62 (29.38) 26 (12.32) 3.14 (1.12)
(11) Providing care for family
after patient has died
Vital component of care 2 (0.95) 1 (0.47) 9 (4.27) 71 (33.65) 128 (60.66) 4.53 (.69)
.03
Frequently able to do 19 (9.00) 66 (31.28) 41 (19.43) 62 (29.38) 23 (10.90) 3.02 (1.19)
(12) Organising family
bereavement support
Vital component of care 4 (1.90) 3 (1.42) 20 (9.48) 67 (31.75) 117 (55.45) 4.37 (.86)
.12
Frequently able to do 29 (13.74) 67 (31.75) 49 (23.22) 46 (21.80) 20 (9.48) 2.82 (1.20)

Note: * p < .05, ** p < .01, *** p < .001.

of care that could provide a comfortable transition to death and death” and “give patients a dignified death” were important to the
a “palliative pathway”. This often (n = 14) involved ascertaining overall process of providing a “unique, targeted experience”.
patient and family wishes through conversations or, if available, Respondents focused on many of the same factors when asked
Advance Care Directives, and a need to honour patient wishes. about the challenging aspects of providing EOL care in the ED.
Responses included “Anticipate it early. Start talking to family to Ability to spend time with the patient and family (n = 53) and to
establish the patient’s wishes. Establish treatment parameters with the provide support were difficult owing to the multiple and competing
family and clinical team” and “Ensure end-of-life wishes are met”. One demands of nurses’ work, “Not being able to provide enough presence
nurse suggested, “Know their wishes/ask their families and respect for the family and patients as patient loads vary”. Indeed, respondents
that. I would say to some doctors, ‘Just because you can, doesn’t mean often spoke of balancing competing needs and demands (n = 45),
you should’”. from both a more general perspective of the busyness of the ED, and
The environment was also a common factor reflected upon (n = the balance between providing EOL care and potentially lifesaving
29), where a single private room away from the ED or, more com- treatment for other patients. Responses from nurses included “time
monly, at least a private space was seen to be important, “Make it pressures and patient load make it difficult to care adequately and
as private as possible and,if appropriate,get the patient up to a single compassionately for a patient who isn’t going to survive”, “balancing
room on a ward where it is less chaotic”. Finally, allowing a dignified priorities of thosewhoare living and end-of-life care”, and “Prioritising
death was mentioned by some respondents (n = 10), where a “good care. Other critical patients will continue to present to emergency and

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Table 4
Perceptions of communication between staff, patients, and families

Item Strongly Disagree n (%) Neither Agree n (%) Strongly agree M (SD)
disagree n (%) disagree nor n (%)
agree n (%)

(1) Nurses and doctors generally talk openly 3 (1.42) 32 (15.17) 17 (8.06) 112(53.08) 47 (22.27) 3.80 (1.00)
with each other about the care that should be
provided to patients who die in the ED
(2) Nurses and doctors generally agree about 7 (3.32) 41 (19.43) 36 (17.06) 106 (50.24) 21 (9.95) 3.44 (1.02)
the care that should be provided to patients
who die in the ED
(3) Nurses and doctors generally agree about 8 (3.79) 35 (16.59) 30 (14.22) 104 (49.29) 34 (16.11) 3.57 (1.06)
when to stop lifesaving treatments and initiate
end-of-life care
(4) Nurses and doctors generally talk openly 5 (2.37) 24 (11.37) 35 (16.59) 112 (53.08) 35 (16.59) 3.70 (.96)
with family members about patient prognosis
and treatment options
(5) Nurses and doctors generally talk openly 7 (3.32) 31 (14.69) 38 (18.01) 92 (43.60) 43 (20.38) 3.63 (1.07)
with other care providers (i.e., chaplains, social
workers, etc.) about patient progress and
treatment options
(6) Family members generally tell staff what 10 (4.74) 50 (23.70) 62 (29.38) 74 (35.07) 15 (7.11) 3.16 (1.02)
the patient’s end-of-life wishes are
(7) Family members generally ask lots of 11 (5.21) 79 (37.44) 50 (23.70) 50 (23.70) 21 (9.95) 2.96 (1.11)
questions about end-of-life care options
(8) Family members generally keep each other 19 (9.00) 58 (27.49) 61 (29.38) 62 (29.38) 11 (5.21) 2.94 (1.07)
informed about the patient’s condition
(9) I feel comfortable talking to patients about 4 (1.90) 28 (13.27) 32 (15.17) 99 (46.92) 48 (22.75) 3.75 (1.01)
impending death
(10) I feel comfortable talking to family 4 (1.90) 26 (12.32) 25 (11.85) 102 (48.34) 54 (25.59) 3.83 (1.01)
members about impending death
(11) I feel comfortable involving family 1 (0.47) 7 (3.32) 17 (8.06) 111 (52.61) 75 (35.55) 4.19 (.76)
members in shared decision-making about EOL
care options

Table 5
Perceptions of role in EOL care

Item Strongly Disagree n (%) Neither Agree n (%) Strongly agree M (SD)
disagree n (%) disagree nor n (%)
agree n (%)

(1) I am clear about my role in caring for 1 (0.47) 8 (3.79) 10 (4.74) 99 (46.92) 93 (44.08) 4.30 (.77)
patients who die in the ED
(2) Care of patients who die in the ED is a 0 (0.00) 2 (0.95) 7 (3.32) 96 (45.50) 106 (50.24) 4.45 (.61)
reasonable expectation of my role
(3) Care of grieving family members is a 0 (0.00) 3 (1.42) 25 (11.85) 106 (50.24) 77 (36.49) 4.22 (.70)
reasonable expectation of my role
(4) I have adequate training to care for patients 8 (3.79) 41 (19.43) 34 (16.11) 85 (40.28) 43 (20.38) 3.54 (1.13)
who die in the ED
(5) I have adequate training to care for family 19 (9.00) 60 (28.44) 43 (20.38) 58 (27.49) 31 (14.69) 3.10 (1.23)
members whose loved one is dying/has died in
the ED
(6) I feel comfortable caring for patients who 0 (0.00) 9 (4.27) 15 (7.11) 108 (51.18) 79 (37.44) 4.22 (.76)
die in the ED
(7) I feel comfortable supporting relatives 2 (0.95) 26 (12.32) 31 (14.69) 98 (46.45) 54 (25.59) 3.83 (.98)
when their loved one has died in the ED
(8) I find it easy to transition from providing 3 (1.42) 18 (8.53) 13 (6.16) 104 (49.29) 73 (34.60) 4.07 (.94)
lifesaving treatment to providing end-of-life
care
(9) Nurses and doctors generally work together 3 (1.42) 18 (8.53) 34 (16.11) 104 (49.29) 52 (24.64) 3.87 (.93)
as a team to provide care for patients who die
in the ED
(10) Care of grieving relatives should be done 15 (7.11) 55 (26.07) 72 (34.12) 51 (24.17) 18 (8.53) 3.01 (1.06)
primarily by staff other than nurses and
doctors (e.g., social workers or chaplains)

often can’t wait for intervention. It can become hard to give the dying also seen to be challenging (n = 17), particularly when it involved
patient and their family the attention and care they need and deserve expectations for recovery or care that are at odds with those of the
with acute and critical patients piling up in the ED”. treating team. This was not restricted to family, with some nurses
The ED environment and an inability to provide an “appropriate (n = 8) reflecting on disagreements between staff regarding care.
area” or “calm, comforting environment” for the patient and family One nurse summed this up as “Agreeing on what the line in the sand
was a prevalent challenging aspect to care (n = 47). Many of the fac- is retreatment”. Indeed, being unable to ascertain the patient’s per-
tors noted as important aspects of care (e.g. “peaceful” and private spective and “not having a clear understanding of the patient’s wishes”
environment) were not present in the ED. Dealing with family was were seen to be problematic where Advance Care Directives did

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Table 6
Perceptions of family presence during resuscitation/CPR

Item Strongly Disagree n (%) Neither Agree n (%) Strongly agree M (SD)
disagree n (%) disagree nor n (%)
agree n (%)

(1) We usually have family members present 24 (11.37) 64 (30.33) 54 (25.59) 53 (25.12) 16 (7.58) 2.87 (1.14)
during resuscitation/CPR in my ED
(2) It is appropriate to have family members 8 (3.79) 20 (9.48) 55 (26.07) 74 (35.07) 54 (25.59) 3.69 (1.07)
present during resuscitation/CRP in the ED
(3) I feel comfortable having family members 14 (6.64) 32 (15.17) 37 (17.54) 82 (38.86) 46 (21.80) 3.54 (1.18)
present during resuscitation/CPR in the ED
(4) Nurses and doctors generally agree on 12 (5.69) 35 (16.59) 64 (30.33) 83 (39.34) 17 (8.06) 3.27 (1.02)
whether family members should be present
during resuscitation/CPR in the ED
(5) There is enough room in the ED for family 46 (21.80) 66 (31.28) 28 (13.27) 58 (27.49) 13 (6.16) 2.65 (1.26)
members to be present during
resuscitation/CPR
(6) Staff have adequate knowledge and 29 (13.74) 69 (32.70) 62 (29.38) 43 (20.38) 8 (3.79) 2.68 (1.06)
training to support family presence during
resuscitation/CPR
(7) Family presence during resuscitation is 5 (2.37) 12 (5.69) 59 (27.96) 82 (38.86) 53 (25.12) 3.79 (.96)
beneficial for the family
(8) Family presence during resuscitation is 5 (2.37) 22 (10.43) 99 (46.92) 52 (24.64) 33 (15.64) 3.41 (.95)
beneficial for the patient
(9) Families should have unlimited access to 5 (2.37) 17 (8.06) 38 (18.01) 63 (29.86) 88 (41.71) 4.00 (1.07)
the dying patient
(10) Dying patients should always have family 0 (0.00) 3 (1.42) 20 (9.48) 66 (31.28) 122 (57.82) 4.45 (.72)
members present if they are available

Table 7
Perceptions of the ED environment and care of people who die in the ED

Item Strongly Disagree n (%) Neither Agree n (%) Strongly agree M (SD)
disagree n (%) disagree nor n (%)
agree n (%)

(1) Dying patients should be transferred out of 4 (1.90) 20 (9.48) 44 (20.85) 63 (29.86) 80 (37.91) 3.92 (1.07)
the ED as soon as possible
(2) The ED is not a suitable place to die 3 (1.72) 29 (13.74) 39 (18.48) 55 (26.07) 85 (40.28) 3.90 (1.12)
(3) I prioritise caring for patients having 20 (9.48) 51 (24.17) 57 (27.01) 60 (28.44) 23 (10.90) 3.07 (1.16)
lifesaving treatments over caring for dying
patients
(4) I find it easy to provide care for family 11 (5.21) 71 (33.65) 38 (18.01) 69 (32.70) 22 (10.43) 3.09 (1.13)
members while also trying to care for the
dying patient
(5) I find it easier to provide care for people 1 (0.47) 8 (3.79) 27 (12.80) 78 (36.97) 97 (45.97) 4.24 (.85)
who die in the ED when they have an Advance
Care Directive or Advance Care Plan
(6) I have enough time to care for patients who 58 (27.49) 86 (40.76) 38 (18.01) 24 (11.37) 5 (2.37) 2.20 (1.04)
die in the ED
(7) I have enough time to care for family 71 (33.65) 83 (39.34) 35 (16.59) 17 (8.06) 5 (2.37) 2.06 (1.02)
members of patients who die in the ED
(8) My workplace provides a formal debrief for 55 (26.07) 69 (32.70) 41 (19.43) 30 (14.22) 16 (7.58) 2.45 (1.23)
staff after a patient has died
(9) My co-workers and I have an informal 6 (2.84) 17 (8.06) 30 (14.22) 117 (55.45) 41 (19.43) 3.81 (.94)
debrief after a patient has died
(10) I find it valuable to debrief after a patient 1 (0.47) 7 (3.32) 45 (21.33) 82 (38.86) 76 (36.02) 4.07 (.86)
has died
(11) My ED has a designated area or room for 53 (25.12) 48 (22.75) 11 (5.21) 56 (26.54) 43 (20.38) 2.94 (1.52)
dying/deceased patients and their families

not exist or were not available, or where death was unexpected or challenges to providing EOL care in the complex ED environment.
wishes not known, “Trying to have family understand it is what is in Similar to previous findings in other countries and Australian stud-
the patient’s interests that is important”. It is important to note while ies that deal with specific patient groups (e.g., Marck et al., 2014),
being mindful of family members and patients’ emotions was con- nurses saw the importance of providing appropriate medical and
sidered an important priority, nurses reflected comparatively little interpersonal support to patients and their families. However, they
on their own emotional responses (n = 4) when providing EOL care. also identified challenges around the demands of the ED space, both
at a physical level (e.g., noise), and the nature of workloads that put
4. Discussion constraints on time that could be spent communicating and being
with the patient and their family. Nurses also identified conflicts
The purpose of this study was to examine Australian nurses’ per- between the nature of the ED as providing lifesaving interventions
ceptions of what they considered important when providing EOL and the focus of EOL care on comfort and palliation. Nurses in the
care to patients and their families, as well as their experiences of present study did not necessarily feel that they had received ade-

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quate training to care for patients at the end of life and their families family presence and, as a result, may allow or deny family pres-
and, indeed, over two-thirds of respondents indicated they had not ence during resuscitation (Giles, de Lacey, & Muir-Cochrane, 2016).
received additional training in providing EOL care. This highlights That nurses in the present study saw the importance of family pres-
the need for continuing education initiatives (Wolf et al., 2015). ence during death, but not so much during CPR, is somewhat at
Nurses perceived almost all elements of care identified in the odds given the potential for resuscitation attempts in the ED to be
survey as vital to their role, including reducing burdensome med- unsuccessful.
ical procedures for dying patients and focusing more on pain and Respondents’ perceptions of the degree of agreement between
symptom control, knowing patient and family wishes, providing staff in EOL care provision in the ED were moderate. In previous
care and access for family before, during and after death, and pro- studies, communication between physicians and nurses was rated
viding emotional and spiritual support to patients. This reflects a as one of the most important supportive elements in providing EOL
focus on concepts inherent in patient-centred (Kitson, Marshall, care (Beckstrand et al., 2008; Heaston et al., 2006). However, a lit-
Bassett, & Zeitz, 2013) and holistic approaches to care (Enns & erature review by Flannery, Ramjan, and Peters (2016) found that
Sawatzky, 2016; Kilcoyne & Dowling, 2007). Indeed, in this study, physicians were seen as being responsible for EOL decision-making
nurses’ responses suggested that in cases where the patient is dying (e.g.,withdrawing treatment), with nurse inclusion and involve-
and may no longer be conscious, many of the elements of patient- ment variable and sometimes informal, and it was not uncommon
centred care, such as respect, acknowledging autonomy, and open for EOL decision-making to be ‘unilateral’ in the ED. This variability
communication (Kitson et al., 2013), are transferred to the patient’s in inclusion in decision-making is despite the nurse providing the
family. The focus by respondents on the importance of the family is most direct patient care and being skilled in assessing the futility
promising, particularly given that much of the research and policy of life-saving measures (Flannery et al., 2016). Perhaps this reflects
discussion of family-centred care provided in the ED tends to focus wider perceptions regarding staff roles, with previous work sug-
(perhaps not surprisingly) on paediatric care (e.g. Byczkowski et al., gesting that care of the patient is “devolved” (McCallum et al., 2018,
2016; Dudley et al., 2015), p. 114) from doctors to nurses when it is apparent that the patient
Unfortunately, there was often a tenuous relationship between will die. Also relevant to communication, respondents reflected
believing that elements of care were vital and nurses being able to that there was often little information provided by family to staff
provide these care elements within the ED. While more medically- regarding EOL wishes or advance directives. Even when available,
focused considerations (e.g., recognising the patient was likely to other studies have suggested that upholding advance directives can
die, adequate symptom management) were able to be addressed, it be at odds with wishes of family or wishes may change as a situation
was harder to provide a quiet and dignified space for death, which, unfolds (Wolf et al., 2015).
as identified in previous work, may be particuarly difficult if hos- Nurses in the present study largely focused on the care and
pitals do not have quiet spaces or private grief rooms (Beckstrand wishes of family, rather than their own emotional reactions. This
et al., 2012). Additionally, engaging in care of the family once the focus is likely due to the nature of questions in the survey focus-
person had died was hard (for similar findings, see Decker et al., ing on patients and families, as well as the reality of a setting
2015). Indeed, a literature review conducted by McConnell et al. where debriefing and support for nurses is often lacking (Wolf et al.,
(2016), found that research on person-centeredness in the ED was 2015). However, this lack of acknowledgment of emotional costs
generally lacking, and that interpersonal aspects of nursing care is concerning given the potential for burnout and negative emo-
(e.g., empathy, compassion, shared decision-making) may be less tional and professional effects for those working in emergency and
of a focus, with “readiness for lifesaving” (p. 39) seen to be the pri- high-dependency settings (Gómez-Urquiza et al., 2017). In previ-
mary role of ED staff. These authors concluded that those on the ous studies, nurses have also reported the often deleterious effects
receiving end of emergency care “were prepared to tolerate this of dealing with family grief (Hogan et al., 2016; Wolf et al., 2015), as
lack of psychological care in trade-off for having the physical aspect well as professional dissatisfaction or moral distress when nurses
of their care treated” (p. 43). experience lack of inclusion in decision-making or disagreements
While such an approach to EOL care likely reflects the nature of with other staff regarding EOL care (Flannery et al., 2016). Nurses
the ED (e.g., patient numbers, high turnover, acuity), it may be that working with patients who die in the ED have highlighted in pre-
a mindset of ED staff is also an important consideration. For exam- vious work the importance of feeling that they had done their best,
ple, Wolf et al. (2015) reported that their nurse participants saw a being able to reflect on their experiences, engaging in self-care, and
“profound dissonance” between emergency and EOL care, and iden- maintaining perspective in order to continue working in the area
tified “difficulty of the mental and emotional switch from ‘fixing’ to and to move forward (Hogan et al., 2016). Self-care and consid-
‘providing comfort’ and the focus on time management where the eration of wellbeing is likely to be particularly important in this
expectation for emergency nursing care is to ‘stabilize and move.’” setting. Indeed, increased use of mindfulness and self-care prac-
(e29). This dissonance is also present in nurses’ responses to fam- tices have been found to predict nurses’ perceived competence in
ily, where respondents in the present study identify challenges dealing with death, which in turn is related to higher compassion
between what family think is possible and the realities of clinical satisfaction, lesser compassion fatigue, and lesser burnout (Sansó
practice (see also Ho, 2016; Walker & Deacon, 2016). The impor- et al., 2015).
tance of ascertaining patients’ EOL preferences and working with
families to do so was discussed by respondents, which may further 4.1. Limitations
challenge staff when families have not discussed end-of-life wishes
and advance directives (Beckstrand et al., 2012). The sample was relatively large and included a mix of metropoli-
While respondents in the present study identified challenges tan and regional/rural respondents from around Australia.
when interacting with family members, providing comfort, sup- However, we cannot determine how many nurses saw an advertise-
port, and being there for family were all considered important, as ment for the survey and chose not to participate. Nurses who did
well as providing family access to patients within the confines of the complete the survey were relatively experienced in providing EOL
ED environment. Nurses, however, reported mixed feelings regard- care and findings may be different with staff who are more junior.
ing having family present during CPR. These mixed feelings reflect While the perspectives of nurses providing EOL care are critical
previous research on family presence during resuscitation, where to ascertain, perspectives of doctors and allied health professionals
clinicians perceive both benefits (family are with the patient at the are also important when assessing aspects of care such as staff com-
time of death) and risks (trauma at the sight of the attempt) of munication. There were also few opportunities for nurses to reflect

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5. Conclusion
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Number 7627; approval date: 30 May 2017) approved the study. Flannery, L., Ramjan, L. M., & Peters, K. (2016). End-of-life decisions in the intensive
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Conflict of interest Giles, T. M., Hammad, K., Breaden, K., Drummond, C., Bradley, S. L., Gerace, A., . . . &
Muir-Cochrane, E. (2019). Nurses’ perceptions and experiences of caring for
None. patients who die in the emergency department setting. International
Emergency Nursing, 47, Article 100789.
Giles, T., de Lacey, S., & Muir-Cochrane, E. (2016). Factors influencing
Funding decision-making around family presence during resuscitation: A grounded
theory study. Journal of Advanced Nursing, 72, 2706–2717.
Gómez-Urquiza, J. L., De la Fuente-Solana, E. I., Albendín-García, L., Vargas-Pecino,
This work was supported by a Flinders University Faculty of
C., Ortega-Campos, E. M., & Cañadas-De la Fuente, G. A. (2017). Prevalence of
Medicine, Nursing and Health Sciences Seeding Grant. The funding burnout syndrome in emergency nurses: A meta-analysis. Critical Care Nurse,
body was not involved in study design, analysis and interpretation 37, e1–e9.
Heaston, S., Beckstrand, R. L., Bond, A. E., & Palmer, S. P. (2006). Emergency nurses’
of data and writing of the report.
perceptions of obstacles and supportive behaviors in end-of-life care. Journal of
Emergency Nursing, 32, 477–485.
CRediT authorship contribution statement Ho, J. K.-M. (2016). Resuscitation versus end-of-life care: Exploring the obstacles
and supportive behaviors to providing end-of-life care as perceived by
emergency nurses after implementing the end-of-life care pathway. Applied
Adam Gerace: Conceptualisation, Methodology, Analysis, Writ- Nursing Research, 29, e7–e13.
ing - original draft, Writing - review & editing. Tracey Giles: Hogan, K.-A., Fothergill-Bourbonnais, F., Brajtman, S., Phillips, S., & Wilson, K. G.
Conceptualisation, Methodology, Investigation, Writing - review & (2016). When someone dies in the emergency department: Perspectives of
emergency nurses. Journal of Emergency Nursing, 42, 217–222.
editing. Katrina Breaden: Methodology, Writing - review & editing. Jabre, P., Tazarourte, K., Azoulay, E., Borron, S. W., Belpomme, V., Jacob, L., . . . &
Karen Hammad: Methodology, Writing - review & editing. Chris- Adnet, F. (2014). Offering the opportunity for family to be present during
tine Drummond: Methodology, Writing - review & editing. Sandra cardiopulmonary resuscitation: 1-year assessment. Intensive Care Medicine, 40,
981–987.
L. Bradley: Methodology, Data curation, Project administration, Kilcoyne, M., & Dowling, M. (2007). Working in an overcrowded accident and
Writing - review & editing. Eimear Muir-Cochrane: Conceptual- emergency department: Nurses’ narratives. Australian Journal of Advanced
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