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Perceptions of a good death: a qualitative study in intensive care units in England 
and Israel 
 
 This is an accepted manuscript of an article published by Elsevier in Intensive and Critical Care 
Nursing in August 2016 available at: http://dx.doi.org/10.1016/j.iccn.2016.04.004 
ABSTRACT 
Objectives 
To explore factors perceived to contribute to ‘a good death’ and the quality of end of 
life care in two countries with differing legal and cultural contexts. 
Design and methods 
Multi-centre study consisting of focus group and individual interviews with intensive 
care nurses. Data were analysed using qualitative thematic analysis; emotional content 
was analysed using specialist linguistic software.  
Settings/Participants 
Fifty five Registered Nurses in intensive care units in Israel (n=4) and England (n=3), 
purposively sampled across age, ICU experience and seniority.  
Results  
Four themes and eleven sub-themes were identified that were similar in both countries. 
Participants identified themes of: (i) timing of communication, (ii) accommodating 
individual behaviours, (iii) appropriate care environment and (iv) achieving closure, 
which they perceive prevent, and contribute to, a good death and good quality of end of 
life care. Emotional content showed significant amount of ‘sadness talk’ and 
‘discrepancy talk’, using words such as ‘could and ‘should’ when participants were 
talking about the actions of clinicians.  
1 
 
Conclusions  
The qualities of a good death were more similar than different across cultures and legal 
systems. Themes identified by participants may provide a framework for guiding end of 
life discussions in ICU.  
Keywords 
Communication, End of life, intensive care unit, linguistic inquiry, nurse, qualitative 
research, focus groups 
 
Abstract:  194 words 
Main text:  3524 words 
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INTRODUCTION 
 
The goal of Intensive Care Unit (ICU) care is to save lives however despite these 
efforts, recent multi-centre studies show ICU mortality ranging from 10.8%- 19.1% 
(Checkley et al 2014, Capuzzo et al 2014). For many patients who die in the ICU a 
decision has been made to change the goals of care from saving life to providing a 
quality death. However, identifying patients who are likely to die is not easy, given the 
often complex and dynamic disease state (Coombs et al 2012). While a consensus has 
been reached regarding what is considered quality EoL care (Nelson et al 2006), 
previous studies have demonstrated variability in EoL care across countries and 
between intensivists within hospitals (Wunsch et al 2005, Ferrand et al 2001, Esteban et 
al 2001).  In an earlier phase of the current study, the authors used the Palliative Quality 
Measures (PQM) for ICU, developed through an extensive programme of work in the 
United States (Nelson et al 2006), to examine applicability in ICUs in Israel (n=4) and 
the UK (n=3) (Endacott et al 2010). Pain assessment and management were the PQM 
most commonly documented across the two countries; documentation practices for 
measures such as social work support and spiritual support were different between the 
two countries, indicating that the PQM was not necessarily sensitive to the structures 
and practices of these countries (Endacott et al 2010). 
 
Different preferences and expectations for EoL care in ICU have been reported between 
patients, the public and clinicians (Endacott & Boyer 2013, Sprung et al 2008), with 
families having a myriad of factors, such as cultural beliefs about life and trust in 
doctors’ decisions, that may influence their perspective (Stonington 2013).  Whilst 
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conflict between clinicians is more likely to be reported when a patient has died 
(Azoulay et al 2009), landmark international comparative studies – ETHICUS (Sprung 
et al 2008) and ETHICATT (Sprung et al 2007) – showed differences in EoL actions 
(Sprung et al 2008) and attitudes (Sprung et al 2007) between northern and southern 
Europe; England and Israel, respectively, contributed data to these two categories of 
countries. There are also key differences in the medico-legal framework and extent of 
public awareness surrounding EoL issues in the two countries, for example overt 
religious involvement in development of the legal framework and presence of 
committees to consider ethical dilemmas arising from care (see Table 1). We sought to 
examine in-depth whether legal and cultural differences between England and Israel 
were reflected in nurses’ views of what is considered a good death in the ICU or what 
factors are associated with quality of EoL care in both countries. As nurses commonly 
illustrated their responses with patient stories, we also examined the language used in 
the patient stories for emotional content. Therefore the aims of this study were to: (1) 
identify factors that nurses perceive to contribute to a good death and quality of ICU 
EoL care in England and Israel, (2) examine whether experiences differed by ICU or by 
country and (3) explore emotional content of patient stories relayed by nurses. 
 
INSERT TABLE 1 HERE 
METHODS 
We designed a qualitative study employing semi-structured individual and focus group 
interviews with ICU nurses in England and Israel. Data collection took place between 
2011-2013. 
Settings 
The study was conducted in three general ICUs in England and four ICUs in Israel. 
4 
 
Participants 
Using a purposive sampling strategy, Registered Nurses (RNs) in the participating ICUs 
were invited to take part in a focus group or individual interview lasting approx 45-60 
minutes. Study information was provided by local investigators (JB, FG, MB, HR, WC, 
CB) and study recruitment was undertaken by the lead investigator (RE) and the local 
investigator who explained the study in detail. The sample included RNs across age 
range, ICU experience and seniority. 
Data collection 
The interview schedule for individual and focus group interviews was modelled on 
work undertaken in the United States to develop a quality measure for EoL care in ICU 
(Nelson et al 2006). Interviews in both countries were conducted by the lead 
investigator (RE), an experienced qualitative researcher, with a local co-investigator, 
and were audio-taped. Data collection ceased when data saturation was achieved. 
Interviews were conducted in English in both countries.  In Israel, most nurses speak 
English well however when participants did not understand a comment or question by 
the interviewer, a translation was given by the co-investigator who attended the 
interview. When a participant shifted from English into Hebrew, the co-investigator 
translated, to allow the interview to progress; this took place in the presence of the 
original speaker, who then verified that the translation was correct. In addition the 
content was later transcribed and translated verbatim to ensure the original meaning was 
captured.  
Trustworthiness (or reliability) of the focus group interviews was addressed through use 
of a consistent process over the data collection period (stability), consistency of 
moderators and coders (equivalence) and consistency of overall responsibility (internal 
consistency) (Kidd & Parshall 2000). Further, the use of patient stories by participants 
5 
 
to supplement a view put forward by another group member indicates consensus, as 
distinct from simple acquiescence (a threat to the validity of focus group data) 
(Onwuegbuzie et al 2009). 
The study was approved by human ethics committees in both countries and was 
conducted in accordance with the ethical standards laid down in the 1964 Declaration of 
Helsinki and its later amendments. All participants gave informed written consent prior 
to their inclusion in the study. Details that might disclose the identity of the participants 
are omitted. 
Data analysis 
Audio tapes were transcribed verbatim and analysed using thematic analysis through the 
five step process of: familiarization with data, generating initial codes, searching for 
sub-themes and themes among codes, reviewing themes, defining and naming themes in 
order to produce the final analysis (Braun & Clarke 2006). All data were initially coded 
by the lead author (RE); trustworthiness of the coding was established by two further 
members of the research team (FG, JB) independently coding 20% of the data, resulting 
in Kappa of 0.85. The full analysis was then checked by other members of the research 
team, with full team discussion when reviewing, defining and re-naming the themes 
until consensus was reached regarding the final themes and sub-themes.  
A second form of analysis, using textual analysis software – Linguistic Inquiry and 
Word Count (LIWC) – was used to examine the emotional content of interview 
transcripts (Pennebaker et al 2007). LIWC is a word-based software programme 
designed to analyse word and word stems in order to examine the emotional, cognitive, 
structural and process components of written text or speech (Pennebaker et al 2007). 
Narratives relating to individual patient stories were extracted from the interview 
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transcripts and the unit of analysis was the individual narrative. LIWC is often used as a 
supplement to other quantitative measures of emotion (Hexem et al 2013) or qualitative 
analysis (Monrouxe et al 2014) and has also been used as a measure in its’ own right 
(Thompson et al 2015). For this study we were interested, as a secondary aim, to 
examine whether there were any differences between the emotional content of patient 
vignettes according to the topic of the vignette and the country in which the interviews 
were conducted. 
FINDINGS 
Fifty five RNs participated in the study, 45 in Focus Groups (eight focus groups in total) 
and 10 in individual interviews. The option of individual interview was taken up by 
nurses who were unable to attend a Focus Group. In both countries RNs from across a 
wide age range (23-54 years), experience (6 months-30 years) and staffing hierarchy 
(junior nurse to ICU Nurse Manager) participated in the study. There were no 
discernible differences in the types of responses according to type of interview 
(individual or focus group) or the experience or seniority of those who attended. 
Thematic analysis resulted in four themes - Timing of Communication, Accommodating 
Individual Behaviours, Appropriate Care Environment and Achieving Closure for 
families and staff – and eleven sub-themes. Examples of data excerpts for the four 
themes are presented at tables 2-5. Quotations are annotated with country, Unit, type of 
interview and interview number.  
Timing of communication 
The first theme, ‘Timing of Communication’ referred to times when the actions of 
clinicians such as  giving information, preparing the family or calling the family when 
death is close may have had considerable impact (Table 2). This theme included three 
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sub-themes: appropriate communication, timely decision making and timely actions. 
Appropriate communication included reference to communication during critical events, 
such as the first visit of the family to ICU, moving a dying patient to a ward or the first 
discussion with a consultant, with examples such as ‘doctors will sometimes say “well 
they may not get better” or “they’re unlikely to improve” when actually the patient is 
going to die’ (UK/B/FG2). Another sub-theme, timely decision making included 
examples where management plans were needed before the night shift started or 
frsutraton was expressed at the lack of decision-making during the weekend. Timely 
action, the third sub-theme, focused on ensuring the patient received appropriate care, 
or that family were allowed to visit freely when their loved one was dying. 
INSERT TABLE 2 HERE 
Accommodating individual behaviours 
The second theme, ‘Accommodating Individual Behaviours’, encapsulated differences 
in the way that patients, families and colleagues reacted to the impending death of the 
patient and the extent to which this was respected and managed (Table 3). Subthemes 
related to: patient responses, family responses and colleague responses. Patient 
responses were identified as quite difficult to manage. However, participants were 
respectful of the need to accommodate individual family responses: “It’s about 
accepting …. you do see somebody who perhaps collapses to the floor, or is absolutely 
distraught; that that might be absolutely the right thing for that person’s grief” 
(UK/B/FG1) and colleague responses: “It is important that the staff know their limits; 
some of the staff will say ‘do you mind if I don’t take him [care for that patient] today’? 
I’d rather they say that than do it not so well; at least it shows that they realise how 
important it is for the family to get it right” (Israel/A/S2). There was also an 
8 
 
appreciation that clinicians have to use their judgment to know when to step back and 
let the family have time with the patient but also the need for clinicians being ‘ready to 
let the patient go’ (Israel/B/FG1). Individual reactions of clinicians and families to the 
impending death could be accommodated when communication was effective; findings 
suggest that the extent to which this happened was variable across ICUs and countries. 
INSERT TABLE 3 HERE 
Appropriate care environment 
The next theme ‘appropriate care environment’ (Table 4) encompassed sub-themes of 
providing a care environment that was appropriate for dying patients, enabled 
culturally sensitive care but identifying that sometimes treatment taken too far caused 
distress. An environment appropriate for dying patients included “having respect for 
somebody’s last hours.  It doesn’t sit comfortably, whether it’s protocol or not, to have 
people laughing and joking outside the curtains when somebody’s dying” (UK/A/FG1). 
In terms of symptom control, pain management was the key goal, but this had other 
benefits: “Enough pain killers, oral sedation, to allow the family to be close to the 
patient, even if it is not so comfortable for the [clinical] team. .. it allows the patient to 
die with dignity more than when they’re alone, if they’re surrounded by their family” 
(Israel/B/S3). Participants also described in detail steps taken to ensure that they 
provided culturally sensitive care for patient and family. The perception of treatment 
taken too far was a recurrent theme across ICUs and countries: “One patient, he just 
went on forever, didn’t he? I’d go in and he’d say ‘I just want to die’ and his wife would 
be crying, saying ‘I just want him to die, I really think it’s cruel, I don’t want this…’ ” 
(UK/B/FG1). However, none of the participants reported intervening on behalf of the 
patient and family in these circumstances.  
9 
 
INSERT TABLE 4 HERE 
Achieving closure 
The final theme, ‘achieving closure’, included sub-themes of finished or unfinished 
business for staff and family (Table 5); participants were more likely to articulate efforts 
to achieve closure for the family than for the staff. For example, “the family need to feel 
they can leave here and carry on because of how we have made the ending” 
(Israel/A/S1) but sometimes not for staff “We don’t get feedback and we don’t get 
debriefed on… especially the really horrendous cases” (UK/C/FG1). There was 
consistency in these findings between ICUs and countries. 
INSERT TABLE 5 HERE 
Analysis of emotional content 
A total of 250 patient stories were extracted from the interviews for LIWC analysis, 138 
from the UK interviews and 112 from the Israel interviews. The main topics of the 
patient stories were: family centred care (n=77, 30.8%), clinician actions (n=132, 
52.8%) and the patient journey (n=41, 16.4%). The emotional content of the patient 
stories showed a significant amount of ‘sadness talk’ in narratives about clinician 
actions (Z=-2.346, p = 0.019, R = 0.148) or the patients journey (Z=-1.805, p=0.071, R 
= 0.114), albeit with small effect sizes. There was also a significant amount of 
‘discrepancy talk’ (using words such as ‘could’ or ‘should’) in narratives about family 
centred care (Z=-2.123, p = 0.034, R = 0.134) or clinician actions (Z=-2.084, p = 0.037, 
R = 0.132). The overall mean scores were higher for negative emotional content in the 
Israel transcripts (1.715 vs 1.54, p=NS) and higher for positive emotional content in the 
England transcripts (3.372 vs 2.724, p= 0.049).    
DISCUSSION 
10 
 
We interviewed 55 nurses in Israel and England using focus group and individual 
interviews and identified 11 sub-themes perceived to contribute to a good death and 
good quality EoL care, grouped into 4 themes. Some of the sub-themes have been 
described in previous studies, for example differences in clinician attitudes and 
decision-making at EoL (Sprung et al 2007, 2008). However, data analysis yielded two 
important findings: firstly, despite clear differences in the legal context for dying in the 
two countries (Table 1), nurses in the UK and Israel identified similar factors that they 
perceive prevent, and contribute to, a good death and good quality of EoL care. Second, 
whilst textual analysis was used as an adjunct to thematic analysis, it did shed light on 
the impact on nurses in terms of behaviours, such as asking not to care for a dying 
patient, and emotional response, for example the sense of sadness when recounting the 
patients journey or actions taken by the clinicians. 
 
The continuation of treatment when it seems futile was a thread running across all four 
themes and across findings from both countries. This is one of the difficulties that the 
Israeli law (Steinberg and Sprung 2006) and the end of life pathway in England (Walker 
& Read 2010) were intended to address; our findings suggest that these efforts have had 
limited success in the ICU. Moreover, the intensity of treatment at end of life has 
previously been negatively correlated with quality of death and dying (Glavan et al 
2008) indicating that patients for whom active treatment is continued may not receive 
optimal care. Analysis of the emotional content of stories offered by study participants 
suggests that this may also have implications for nurses’ wellbeing.  
 
11 
 
Transition to EoL care has been reported to cause tension between doctors and nurses 
(Azoulay et al 2009, Long-Sutehall et al 2011) and between ICU and referring teams 
(Coombs et al 2012). The importance of communication to ameliorate the tensions 
surrounding EoL care is not new (Curtis & White 2008). The ethos in cancer care that 
communication should be a process of ‘mututal influence’ (Epstein & Street 2007) is 
equally applicable with ICU patients approaching end of life to enable patient wishes to 
be met, without necessarily expecting that the patient or family will be involved in 
decision-making (Ekdahl et al 2010). The ambiguous communication reported by our 
participants highlights the need for nurses and physicians to be cognisant that family 
members may have an ‘optimism bias’ in which bad news may be viewed positively 
(Lee Char et al 2010, Zier et al 2012). A communication intervention developed for 
families of dying patients was found to enable them to have more realistic expectations 
(Kirchoff et al 2008); our findings indicate that initiatives of this type should be more 
widely applied. 
 
Patient and/or family involvement in decision-making has received much attention over 
the past decade (Azoulay et al 2004, Heyland et al 2003, Lee Char et al 2010). A three 
step-approach has been proposed for patient-centred decision-making in ICU (Curtis & 
Vincent 2010): assess prognosis and certaintly, assess family preference for role in 
decision making and adapt strategy according to patient and family factors. Our findings 
suggest that the first of these steps doesn’t always happen. Prognosis, or at least the 
willingness to communicate prognosis, appeared to be a key missing element in the 
communication between clinicians and families and was a source of concern for study 
participants. The delivery of bad news can be stressful for clinicians (Falowfield & 
Jenkins 2004), with clinicians sometimes deliberately exaggerating positive prognosis 
12 
 
when communicating with cancer patients and families (Lamont & Christakis 2001) 
possibly because of their own discomfort (Miyata et al 2005). The extent to which this 
applies in ICU is not clear. However, this practice can leave families misunderstanding 
basic information about prognoses, diagnoses or treatments after discussion with 
clinicians (Azoulay et al 2000). 
 
Communication between clinicians is essential to enable understanding of each other’s 
views; however, variability in inter-professional and inter-disciplinary decision making 
about EoL care has been reported previously (Azoulay et al 2009, Embriaco et al 2007, 
Studdert et al 2003), with personal beliefs and values of clinicians cited as a 
confounding factor impacting on decisions at end of life (Coombs et al 2012). Our 
findings provide specific examples of areas in which this communication is 
problematic. Handling unrealistic requests from family members is a key task in end of 
life communication (de Haes & Teunissen 2005); however, managing the dual agendas 
of providing hope and conveying a realistic prognosis have also been reported as the 
most difficult aspects of communication (Feudtner 2005). Our findings reveal that ICU 
nurses also find this challenging, particularly when physicians have not provided clear 
prognostic information to families. The emotional and cognitive demands made on team 
members when transitioning to EoL care warrants wider acknowledgement and 
exploration (Coombs et al 2012). 
 
Our participants’ response to continued ‘futile’ treatment is similar to the finding of 
Coombs et al (2012) that nurses reported patients as ‘actively dying’.(p525); our 
findings add weight to their suggestion that reframing futility to include a diagnosis of 
dying might faciliate more timely decision making. Nurses in this study were conflicted 
13 
 
by their need to advocate for the patient and need clearer guidance. Findings from a 
single-site ethnographic study indicate that nurses’ relationships with each other can 
hinder opportunities for advocacy (Sorensen & Iedema 2007). This warrants further 
investigation, possibly in the context of an intervention to improve inter-professional 
communication with patients and families towards the end of life. 
 
Limitations 
Our study has some limitations. The Units recruited into the study were not necessarily 
representative of their countries but were of varying size and patient casemix. The 
interviews were all conducted in English; in Israel this generally wasn’t the participants 
native language and they occasionally drifted into Hebrew, which wasn’t the 
interviewer’s native language. However, this was anticipated during the planning stage 
and steps were put in place to mitigate.  Interview participants in Israel were from 
different cultural backgrounds whilst the UK participants were all caucasian; we do not 
know whether this may have influenced findings, although table 2 illustrates similar 
findings across the participant groups. 
CLINICAL IMPLICATIONS 
Our findings have some important implications.  
 There is much discussion in the literature about patient and family involvement 
in decision-making; our findings emphasise the need for simple communication 
with families and patients at key points in the patient’s ICU journey.  
 Nurses can play a part, not just in decision-making (Benbenishty et al 2006), but 
in supporting physicians to communicate with patients in the process of dying 
and initiating this process with their physician colleagues. 
14 
 
 Whilst the UK guidance for EoL care has recently been subject to a major 
review (Leadership Alliance for the Care of Dying People 2014), this does not 
relate specifically to ICU. Our findings indicate that clearer guidance for EoL 
care in the ICU environment in both countries would be of value. 
 
Acknowledgements 
The authors would like to thank Professor Bee Wee, National Clinical Director for End 
of Life Care, NHS England, for feedback on the UK component of Table 1. 
Funding 
The study was part funded by the UK Intensive Care Society and the Isaiah Berlin 
Academic Study Group. The funders had no involvement in design, conduct or 
reporting of the study. 
Conflict of Interest 
The authors declare that they have no conflict of interest. 
15 
 
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