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Title: Negotiated reorienting: a grounded theory of nurses’ end-of-life decision-
making in the intensive care unit
International Nurses’ End-of-Life Decision-Making in Intensive Care Research Group
International Journal of Nursing Studies 52 (2015) 794-803
1
ABSTRACT
Background: Intensive care units (ICUs) focus on treatment for those who
are critically ill and interventions to prolong life. Ethical issues arise when
decisions have to be made regarding the withdrawal and withholding of life-
sustaining treatment and the shift to comfort and palliative care. These issues
are particularly challenging for nurses when there are varying degrees of
uncertainty regarding prognosis. Little is known about nurses’ end-of-life
(EoL) decision-making practice across cultures.
Objectives: To understand nurses’ end-of-life decision-making practices in
ICUs in different cultural contexts
Design: We collected and analysed qualitative data using Grounded Theory.
Settings: Interviews were conducted with experienced ICU nurses in
university or hospital premises in five countries: Brazil, England, Germany,
Ireland and Palestine.
Participants: Semi-structured interviews were conducted with 51 nurses (10
in Brazil, 9 in England, 10 in Germany, 10 in Ireland, and 12 nurses in
Palestine). They were purposively and theoretically selected to include
nurses having a variety of characteristics and experiences concerning end-of-
life decision-making.
Methods: The study used grounded theory to inform data collection and
analysis. Interviews were facilitated by using key questions. The comparative
analysis of the data within and across data generated by the different
research teams enabled researchers to develop a deeper understanding of
end of life ethical decision-making practices in the ICU. Ethical approval was
granted in each of the participating countries and voluntary informed consent
obtained from each participant.
Results: The core category that emerged was ‘negotiated reorienting’. Whilst
nurses do not make the ‘ultimate’ end-of-life decisions, they engage in two
core practices: consensus seeking (involving coaxing, information cuing and
voice enabling); and emotional holding (creating time and space and comfort
giving).
Conclusions: There was consensus regarding the core concept and core
practices employed by nurses in the ICUs in the five countries. However,
there were some discernible differences regarding the power dynamics in
nurse-doctor relationships, particularly in relation to the cultural perspectives
on death and dying and in the development of palliative care. The research
suggests the need for culturally sensitive ethics education and bereavement
support in different cultural contexts.
Keywords: intensive care, end of life decision-making; grounded theory;
International Journal of Nursing Studies 52 (2015) 794-803
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What is already known about the topic?
•A three-stage end of life trajectory in ICUs has been identified: hope of
recovery following admission; move from treatment to care; and to ‘a
controlled death’ (Coombs et al 2012);
•Doctors make treatment withdrawal decisions and nurses are ‘tasked
with operationalizing’ the decision-making in ICUs (Long-Sutehall et al
2011);
•Ethical dilemmas occur in relation to the withholding and withdrawal of
treatment and there are variations in practices across countries (sprung
et al., 2003).
•Nurses employ a range of strategies and roles in end-of-life decision-
making (Adams et al 2011).
What this paper adds?
•This cross-cultural exploration of nurses’ involvement in end-of-life
ethical decision-making practice in ICU extends knowledge of common
factors in fice diverse cultures: Brazil, England, Germany, Ireland and
Palestine;
•The study offers a grounded theory of nurses’ EoL decision-making
practices in the ICU context identifying a core category of negotiated
reorienting;
•The findings support consensus regarding the core category and core
practices (consensus seeking and emotional holding) that enable
reorientation to occur in relation to EoL decision making. There are
also suggestions of cultural and professional differences in relation to
nurse autonomy in the ICU, religion, attitudes to death and dying, the
provision of palliative care and resource constraints.
1. Introduction
Intensive care units (ICUs) provide increasingly sophisticated
treatments to those who are critically ill. Nurses who work in these areas
require a high level of knowledge and skill to negotiate technical and
pharmacological interventions designed to save and extend life. When life-
prolonging interventions are considered futile or to prolong the suffering of
patients and families, decisions are required regarding their cessation and the
move to comfort or palliative care. Given their proximity to patients and
families, nurses working in ICU have an important role in end of life decision-
making. These decisions are ethical in nature as they relate to quality and
sanctity of life and to balancing ethical principles such as respect for
autonomy, do good, minimize harm and treat people justly (Beauchamp and
Childress, 2013). Although there has now been significant research in Europe
and the United States regarding nurses’ roles in, and experience of, ethical
decision-making in end-of-life situations in the ICU (for example Halcomb et
al., 2004; Inghelbrecht et al., 2009; Latour et al., 2009; Long-Sutehall et al.,
2011;) there has been little research exploring nurses’ end-of-life decision-
International Journal of Nursing Studies 52 (2015) 794-803
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making practices across cultures, particularly between European countries,
South America and Western Asia. This study aimed to begin to remedy this
research deficit.
2. Background
The ICU has been described as the ‘highest mortality unit’ in any hospital
(Lee IHPS 2013) . Estimates of the percentage of patients who die in the ICU
vary. In the US it is estimated at between 8 to 18% (ibid) and in Australia the
death rate is estimated as between 15 and 20% (Halcomb et al 2004). ~The
UK death rate is 17.1% of admissions (ICNARC, 2010). For patients admitted
to ICU the overall mortality rate is 19% in Ireland (The Irish Critical Care Trials
Group, 2008). For the countries in our study, the overall score in the ‘Quality
of Death Index’ (Economist Intelligence Unit 2010 p.11) puts the UK (1st),
Ireland (4th) and Germany (8th) high on the overall index score and Brazil
(38th) relatively low. The index scores countries in relation to 4 categories
basic EoL healthcare environment, availability of EoL care; cost of EoL care,
and quality of EoL care. Palestine is not scored. The report emphasises the
importance of combating the stigmatisation of death and, by association, of
palliative care in some cultures and the need for more training in palliative
care.
A definition of end-of-life decision-making was proposed by Thelin
(2012 p.29) as: ‘the process that healthcare providers, patients and patients’
families go through when considering what treatments will or will not be used
to treat a life-threatening illness’. Such decision-making becomes more
challenging in contexts of uncertainty and when a transition from therapeutic
intervention to end of life or palliative care is considered (Coombs et al 2012).
Exploration of the practices of nurses in EoL decision-making and the factors
affecting their decisions can serve to raise awareness of and improve
EoLcare. International comparison of the nursing role in EoL decision making
in ICU highlights challenges and requires consideration as to how to ensure
ethical and compassionate care is a global reality in ICU. It has been argued
that ‘understanding ethical decision-making is an important part of
understanding professionals’ enactment of their moral agency’ (Rodney et al
2002 p.76). Ethical and clinical decision making are inextricably linked and
whilst not all EoL decision-making raise ethical problems, they all raise ethical
issues. These issues relate to quality and sanctity of life and to ethical values
such as autonomy and dignity (McCarthy et al., 2011).
The literature suggests that nurses engage with the transition from
‘cure’ to ‘care’ in the ICU, utilising a range of roles and strategies to work well
with patients, families and colleagues. Research in England by Coombs et al
(2012) detailed a three stage end-of-life trajectory for patients in intensive
care (from admission with hope of recovery; to transition to end of life care;
and to a controlled death). In a grounded theory study using clinical vignettes,
Long-Sutehall et al (2011 p.1471) identified ‘the process of negotiated dying’
as the key category, from their sub categories of: assessing, coordinating,
facilitating and operationalising. An earlier UK grounded theory study,
exploring nurses’ experiences of caring for ‘hopelessly ill patients in intensive
are’ (Simpson 1997), identified ‘reconnecting’ as a core category. This is
International Journal of Nursing Studies 52 (2015) 794-803
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described as ‘the process by which nurses attempt to overcome the
dehumanizing aspects of dying in a technological environment’. The author
highlights nurses’ priority that the patients’ death is ‘peaceful’ (p.196).
Decision-making, in relation to the provision of comfort care and to mediation
and advocacy decisions with patients and families, is discussed by Bryon et al
(2010) who report ‘the formation of a picture’ (p1109) as preceding decision-
making, with the nurses assuming the role of ‘initiator’ of the decision-making
process. A systematic review of ‘nursing roles and strategies in end-of-life
decision making (Adams et al 2011), albeit in acute care, identifies three
nursing roles as: information broker (giving information to physicians, giving
information to family members and mediating); supporter (building trust and
using empathy; and as advocate (to physicians and to families). The literature
highlights the importance of taking into account cultural and religious values
and beliefs (Latour et al., 2009; Morgan, 2008; Thelen, 2005).
Whilst recognizing the magnitude of decisions to withdraw and withhold
treatment and expressing sympathy for physicians’ involved, nurses feel that
their opinion should be sought because they spend more time with the patient
and their family and they are more aware of their wishes (McMillen 2008). In
line with previous studies (Simpson 1997), the length of ICU experience was
found to affect nurse’s inclusion in decision making. Their involvement in
such decisions are often subtle means such as planting a seed (Simpson
1997). While doctors bear the burden of making the decision, nurses
generally implement it and have to live with the decision made by someone
else (Coombs et al., 2010). The hierarchical structure of healthcare can
render nurses unable to influence EoL decision-making, despite their
expertise and involvement with the patient. Nurses can often feel their voice is
unheard and this is reported to be a key source of moral distress
( Halcomb,et al., 2004; Oberle and Hughes, 2001).
Our research was conducted in five countries with very particular and
different historical, healthcare and cultural contexts. We provide a brief
overview of some of the key features of each country: Brazil, England,
Germany, Ireland and Palestine.
2.1 . End of life decision-making - the Brazilian context
Brazil is the largest country in South America and also the most populated
ranking fifth in the world with a population of 180 million people. In Brazil the
deth rate in ICU ranges from 5.4% to 33% depending on the admission
diagnosis and other clinical criteria (Oliveira et al., 2010). Challenges
experienced by nurses in ICUs have been reported as relating to:
inconsistency in the quality and accessibility of ICU educational provision; the
low number of registered nurses working in ICU; the lack of certification
required to work in ICU areas; and a paucity of nursing research in this area
(Padhilha, 2008). Few of these studies have included the experiences of the
nurse as a participant and researcher (Moritz, 2005; Moritz and Nassar, 2004;
Piva et al., 2011; Soares, 2011). In these studies, the doctor is the one
responsible for making decisions, although they suggest the need for
multidisciplinary discussion. Only one of these studies investigated the
position and participation of nurses (Fumis and Deheinzelin, 2010).
International Journal of Nursing Studies 52 (2015) 794-803
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2.2 . End of life decision-making - the English context
The United Kingdom comprises four countries (England, Scotland, Wales
and Northern Ireland) with a population of 63.7 million and much cultural and
religious diversity. Over half of all deaths in the UK (58%) occur in acute
hospitals (Department Health 2008) and a significant number of patients die in
intensive care units (ICU), that is, 17.1% of admissions to ICU (ICNARC
2010). A critical discourse analysis of four key UK critical care documents
published between 1996 and 2006 concluded that there is little clear guidance
for health care professionals working in ICU on how to manage EoL care
(Pattison, 2006). The review of the Liverpool Care Pathway makes a
consideration of EoL care timely (Neuberger, 2013).
2.3. End of life decision-making - the German
Germany has a population of 80.5 million. Nearly half of all deaths in
Germany (47,6%) occur in acute hospitals (German Federal Statistical Office
2011) and a significant number of patients die in intensive care units (ICU)
each year. As in the other countries, there is also a paucity of guidance in
relation to decision-making at the end of life. This is recognised as one of the
most difficult tasks in medical care (Synofzik, 2007). Other challenges include
witnessing suffering, which engendered a moral obligation to reduce that
suffering. There is little explicit reference to nurses’ involvement in decision-
making in Germany.
2.3 . End of life decision-making - the Irish context
Ireland is a predominantly Catholic country (84%) with a population of 4.5
million. Historically, it has been a conservative and monocultural society but
this has changed in recent years due to the effects of immigration and
emigration. At least half of all death in Ireland occur in acute hospitals (48%)
(McKeown et al 2010a). The first ever National Audit of End-of-Life Care in
Hospitals in the last week of life, suggests that end-of-life care in Irish
hospitals compares favourably with that reported by hospitals elsewhere
(McKeown et al 2010a). Nevertheless, treatment cessation decisions taken
about dying patients in Irish hospitals are less frequent compared to patients
dying in other European countries. Decisions to withhold or withdraw life
support were taken more frequently in intensive care (53%), compared to
other wards (47%). However, this falls well below the European average
(Sprung et al., 2003 cited in McKeown 2010b: 104). Finally, there are high
levels of disagreement between nurses and doctors with regard to key
aspects of care and symptom management, the quality and focus of
communication with patients and relatives, and the degree to which they
document and coordinate care (McKeown et al 2010b: iii).
2.5. End of life decision-making - the Palestinian context
Palestinians living in the Gaza Strip are a homogenous and
conservative population with the same ethnicity and same culture. The great
majority (about 97%) are Islamic. The population of Palestine is 4.2 million
with 1.6 million living on the Gaza Strip. Until 1990 there were no ICU’s in the
International Journal of Nursing Studies 52 (2015) 794-803
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Gaza strip. There are now 3 mahor ICU’s in Gaza and 2 small units. Death is
considered as a natural part of life and as a transition from our life to the
afterlife. In the Gaza strip, where this research was conducted, palliative care
is underdeveloped. There are no specialists in palliative care or any units or
health department for providing such care and no nursing homes or hospices.
Palliative care underdeveloped and limited to giving pain medications for
oncology patients. Resource constraints are a significant problem.
3. Design
Given the aims of the research and the social nature of the setting,
grounded theory was chosen as the method since it has as its basis the
systematic generation of theory from data (Glaser and Strauss, 1967)). It is
also concerned with identifying how people repond to their own interpretation
of reality (Glaser, 1978). It is predicated on the ideas that researchers should
focus on problems that are of concern to participants and not to researchers.
Data collection is characterized by openness: to the way participants see the
main problem they are confronted with and openness to the relevance of local
and professional constructs (Gibson and Harman, 2014). The emphasis in
grounded theory is therefore on the experience of participants in that the
problem is defined by them and not by the researcher. Qualitative
methodologies are broadly concerned with how to deal with the multiple
realities in giving “voice” to participants and how to adequately represent their
views through thick description (Murphy et al., 1998). However the end
product of grounded theory is not thick description of what participants do and
say but a conceptualization of how they resolve or process their main
concern, by enerating a theory that is readily modificable (Glaser, 2001). In
contrast to constructivist Grounded Theory, the emphasis in classic grounded
theory is on the emergence of a core category.
4. Research aim
The research aimed to understand nurses’ decision-making practices in
intensive care units in different cultural contexts.
5. Participants
Semi-structured interviews were conducted between 2012 and 2013 with
51 nurses (10 in Brazil, 9 in England, 10 Germany, 10 in Ireland, and 12
nurses in Palestine). They were purposively and theorietically selected to
include nurses having a variety of characteristics and experiences concerning
end of life decision-making. Nurses were eligible to participate if they had at
least 6 months experience of working in an ICU
and were currently working in an ICU at the point of recruitment.
In all countries, nurses were initially invited to participate by distribution of
a Participant Information Sheet with contact details of researchers.
The interviews were audio-recorded with the participants’ consent and the
data transcribed verbatim. During the interview, the participants were asked
broad questions regarding their perspectives in EoL care: the EoL decisions
they are involved in; and the practices they support. Interview questions were
also informed by theoretical sensitivity, where questions were generated by
International Journal of Nursing Studies 52 (2015) 794-803
7
previous interviews. They were invited to describe an EoL situation they were
involved with. Field notes both descriptive and reflective were recorded by
the interviewers in each country. The interviews lasted 40-60 minutes and
were usually held in a reserved room in a university or hospital.
6. Ethical review of study
The project proposal was reviewed by a Research Ethics Committees or
Institutional Review Boards in each of the five countries. Potential participants
received Information Sheets regarding the project and those willing to
participate gave written consent. They were made aware that they could
withdraw at any time with no adverse consequences and standards of
confidentiality were explained.
7. Analysis
The project team in each country participated – in person or by Skype – in
a two day analysis workshop at the University of Surrey in April 2012 in order
to discuss the analysis of each country’s dataset. In September 2012 memos
were circulated between countries by email and initial project findings
discussed at a team meeting in Izmir, Turkey, in October 2012. Memos with
supporting quotes and full transcripts of three interviews from each coutry
were prepared and circulated to all team members. Researchers in each
country read all of the transcripts independently and separately coded the
data, considering patterns across memos and transcripts. AT research team
meetings – in person and by Skype – in February and April 2013, the team
discussed patterns relating to a core category. In June 2013 a template was
circulated with sections for selected memos with supporting examples from
interviews in each coutry. In July 2013, a tem meeting in Ireland finalised the
core concept and discussed dissemination.
Consistent with grounded theory, data were coded using constant
comparison and open coding. Open coding was continued until the core
category emerged then selective coding was used. Data collection continued
until data saturation, that is, until no new properties were identifed and the
researchers could understand nurses’ experiences (Glaser 1978).
7.1. Rigour and trustworthiness
Inter-coder reliability was checked throughout the process of analysis.
Constant comparative analysis was used to compare the data, to generate
categories and concepts. Constant comparison helps to enhance contextual
sensitivity because it aids the identification of persistent patterns and
differences within and across interviews and enables researchers to identify
the features that constitute categories. Consistent with Grounded Theory,
direct quotes are provided for illustrative rather than evidentiatry purposes.
8. The Theory
The core category identified from the analysis is: negotiated reorienting.
End-of-life situations in ICU involve varying levels of uncertainty with regard to
the prognosis of the patient. The shift from uncertainty to greater certainty of
International Journal of Nursing Studies 52 (2015) 794-803
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impending death implies that activities that are oriented towards the goal of
curing (therapeutic interventions) are now ending. They are replaced by a new
field of activities that are prompted by the dying process and reoriented
towards the goal of ensuring a comfortable death for the patient and
supporting the family to come to terms with what is happening. Nurses then
have an active role in ‘negotiated reorienting’, that is, in facilitating the shift
from a narrower to broader and more holistic practices, towards activities that
are oriented towards curing to a different set of activities that are oriented
towards comfort and support. The negotiation is relational and involves core
practices that make the reorientation possible. Negotiated reorienting can
then be expressed in terms of two core practices: Consensus Seeking and
Emotional Holding.
8.1 Consensus seeking
Through consensus seeking, nurses bring about the realisation and
acceptance that a patient is at the end of life despite maximum support.
Nurses coax physicians to make decisions to withdraw, de-escalate or limit
treatment by directly expressing their views, appealing to other authorities (for
example, an ethics council in Germany) or detailing the deteriorating condition
of the patient to them. To enable relatives’ involvement in decision-making,
nurses figure out and support their understanding of the situation through
information cuing and voice enabling. In doing so, nurses talk about the
necessity of ‘knowing the reality’ or ‘painting the real picture’ and they engage
in consensus seeking practices concurrently and opportunistically until
consensus is achieved.
8.1.1 Coaxing
In general, while nurses say they do not wish to see prolongation of the act
of dying, they are highly conscious of the moral implications of
withholding/withdrawing treatment and this influences their involvement in the
decision-making process in EoL care. Their level of certainty as to the futility
of the treatment and their religious beliefs influence their level of participation
in EoL decisions.
If nurses feel certain that continued treatment is futile then coaxing can
bring about the realisation in physicians, who hadn’t initiated the process
themselves, that they should consider withdrawing or de-escalating treatment.
The greater their experience the more likely nurses will engage in coaxing in
four of the five countries our study (not Germany) . Where there is mutual
respect or where there is disagreement among physicians there is a greater
likelihood that nurses’ opinions will be considered.
Certainly if they hadn’t initiated the process you might start talking
about it with them. Like what do you think about this?... And there
would be a bit of coaxing. The consultant would be easily coaxed to
maybe de-escalate, maybe not de-escalate but certainly not to
escalate. (Ireland 1)
Sometimes, there will be some disagreement among the doctors
International Journal of Nursing Studies 52 (2015) 794-803
9
themselves about that case. But if the nurse is an expert with good
experience and knowledge, he/she can influence the decision of the
doctors. Some physicians consult nurses in these decisions and they
consider them (the nurses) as an important part of the team. (Palestine
2)
In addition, through factual reporting of patients’ response to treatment
and by giving their own opinion, nurses try to convince physicians that further
treatment is unlikely to make a therapeutic difference.
Today I took over a patient and his condition was not the same. It is
deteriorating and I will be after the doctor saying that the condition is
deteriorating and he has to inform next of kin (Ireland 6)
I’ve kind of got more courage or something and I spoke to the
Consultant and when he asked me how she’s (patient) doing I said
‘She’s not doing and this is kind of coming a little bit onto borderline
silly cos when we suctioned her, her immortal fear, you can see the
fear on her face, real fear, you know [...] but we can initiate and sort of
put the hard facts in front of them, I’m talking about the clinical
colleagues, the medical staff, and again it just depends on the person,
if they’re willing to listen to you or not. (England 1).
On the other hand, the greater the uncertainty in relation to the
prognosis of the patient, the greater nurses’ discomfort with decisions related
to withdrawing treatment and, sometimes, they may try to convince doctors to
not withdraw or postpone treatment. Their fear that they are engaged in a
form of euthanasia is determined by social norms and religious values.
We have the impression that when we take a patient without any
prognosis off ventilation, intubation and feeding we’re killing him,
shortening his life even more. So I don’t feel very well in this situation.
I wouldn’t feel good. I have the impression that I’m shortening the
patient’s life (Brazil 3).
Nurses try to ensure that relatives are prepared for and participate in
whatever decisions are being contemplated through information cuing and
voice enabling.
8.1.2 Information cuing and voice enabling
Nurses are well placed to establish the needs and preferences of relatives
and tailor information accordingly and do so through information cuing, where
they try to figure out what relatives already know through listening,
questioning and being present with them and responding to individual cues for
information.
You would look for the cue off the family.....You’ve got to tailor your
approach to the people you’re dealing with..... I am having an
impression as to how much they want to know. If they ask a lot of
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questions, then we give them a lot of information. If they don’t, then
don’t bombard them. They obviously don’t want to know. Some people
don’t want too much information; some people do. (England 1)
While relatives have different levels of information and understanding in
relation to their loved one’s dying process; they may also have different
capacities to communicate their concerns to physicians. Nurses see
themselves as having an obligation to enable families to be more involved in
decision-making but they vary in the ways in which they meet this obligation.
In settings where nurses’ views are respected and in situations where a
doctor has already disclosed the patient’s prognosis to the relatives, nurses
are more likely to engage in voice enabling, where they take an active role in
developing relatives’ understanding and supporting them to articulate their
concerns.
Nurses use a number of strategies to ensure that relatives can
articulate their concerns, wishes and hopes to physicians. They do not only
share information with families. Nurses also get information from families that
doctors do not have the time to elicit. They observe families to detect whether
or not they want nursing support, for example, if they wish to have a nurse sit
with them. Nurses check relatives’ levels of understanding and sometimes
seek approval from relatives as to what is being done on a day to day basis.
Nurses try to catch the right moment to give relatives a voice that is to say,
they try to open a space for conversation and have relatives put their
questions. They share their observations with relatives and this ensures that
relatives can more effectively take part in any discussions about the patient
such as further treatment, continuing treatment, escalating or reducing
treatment.
If I feel the situation needs to be progressed a bit more, I might say to
the family: how do you feel about this? Are you happy about what’s
going on? Well not really; what’s the point? I might say why don’t we sit
down with the consultant and have a chat....’ (Ireland 1)
Alternatively, where nurses’ views are not taken seriously and
physicians do not share the patient’s prognosis in a clear and transparent
way, nurses feel frustrated and are more likely to take a passive or neutral
stance in relation to voice enabling. The Palestinian and Brazilian data, for
example, indicated that nurses working in contexts where their views are not
taken seriously, might wish to support the family, but are reluctant to confront
the doctors.
It's very difficult, very difficult indeed, because we know what is going
on, we know the reality, what will happen to the patient, but the family
does not ... So frequently they speak another language, and we have
to be very careful with this because you cannot hint to the family that
the patient will die... we always have to play along, always ... We
should not keep their hopes up, but at the same time we shouldn’t take
them away from them. We have to be a bit neutral. [...] (Brazil 9)
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Participating in the decision-making related to care at end of life
depends on the personality of the doctor. Some doctors will allow
nurses to participate in the process and listen to their opinions. They
might agree with it or not. But some doctors will not allow nurses to
participate in the process. (Palestine 4)
Overall, nurses are generally actively involved in reorienting activities
from those focused on cure to those focused on care in end-of-life situations.
A successful result of nurses’ consensus seeking activities is a timely de-
escalation of futile treatment and the family’s acceptance of the situation and
agreement with the clinical decisions made. The second sub-core category is
emotional holding.
8.2 Emotional holding
In EoL situations, nurses must face the family’s suffering at the loss of
their loved ones at close proximity and over fairly long periods of time.
Depending on the power relationships among health professionals, nurses
use various strategies to emotionally support families: they prioritize time
spent talking with family members by time-space creation; give hints and/or
use religious rituals to communicate that the patient is near death; bend rules
to create more time and private spaces where families can grieve together.
They also draw attention to the need for continuing care, pain relief and
comfort measures through comfort giving.
8.2.1 Creating time-space
If nurses perceive that families do not appreciate the seriousness of the
situation, the futility of treatment or the imminent nature of death, then through
time-space creation, nurses try to bring about acceptance of the situation.
Nurses’ first concern is that families are told in a timely way that their relative
is dying and this is reinforced through bounded communication and the use of
religious rituals Sometimes this may only involve a matter of hours. Nurses
will anticipate when it is important for family members to come in and be with
the patient.
We’re the ones who decided to call the family. We suggested it – we
realized that a little earlier, perhaps we realized it just before the
medical professionals [...] It is usually the nurse’s job to call the family
in these situations and to try to make the patient as comfortable and
human as possible for the end- of- life process. (Brazil 1)
Through time-space creation, nurses make themselves available,
where possible, to be with the family and provide support once relatives learn
of their loved ones’ prognosis. They assess relatives’ understanding of the
situation and related issues by engaging in subtle questioning and active
listening. Time-space creation ensures that nurses are able to provide
emotional support to relatives, especially when they have been given bad
news. Time-space creation also facilitates relatives to absorb what has been
said and to provide any clarification.
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I see this as our (nursing) task, that we are not doing the primary
informed consent, but give the (so-called) secondary one. That we just
go on talking with the patients and the relatives. This is not too much
for me. I think it is a pleasure too if we can clarify things for relatives
and patients.” (Germany 10)
In bounded communication, a limit is set on communication and nurses
are clear that they only communicate with families in a way that has been
predetermined by physicians. It involves reinforcing what the physician has
said while not dealing directly with questions about what are considered the
medical domain such as prognosis. Accompanying the physician to
communicate with relatives enhances this since they know exactly what
relatives have been told and they can then reinforce the message while
checking that it is understood. Nurses are very cautious; they do not want to
deviate from what the physician has said as they fear crossing the boundary
into what is regarded as the medical domain.
I said trust me, here they do everything and I can guarantee you, they
kind of like to hear that nobody ever comes to this decision lightly. I
said it has been thought out a long time, every input has been put into
your husband or whatever and I said trust me, this is not a light
decision for them and they sometimes feel if you have been there for a
while and have been their support they need to hear that and its re-
enforcement. (Ireland 9)
Where nurses perceive the family to be religious, they may also appeal
to some religious rituals such as prayer or references to religious texts (Holy
Quran or Bible) to convey the seriousness of the situation to the family.
In some cases, family request to transfer the patient (who is
considered at the end of life and in a very serious condition) to be
referred to another medical centre outside Gaza Strip and I know from
my experience that the patient’s chances to live is very limited, I ask
them to pray for the family, emotionally support them and ask them to
seek patience from Allah.(Palestine 7)
In time-space creation, nurses also negotiate with doctors and families
to delay treatment withdrawal so that a family member can be at the bedside.
Nurses try to ensure that the family spends time with the patient to say
goodbye even if this means that they must bend the hospital rules to make
this happen. For example, usually, there are fixed visiting hours in the ICU
and usually, nurses adhere to this policy. However, at the end of life, if the
patient requests it, they will allow a family member to visit out of hours. Where
possible, they will also let more family members – even children - to visit and
in some cases to stay with the patient even overnight.
Where death is imminent and nurses are not too busy they will try to
create a more peaceful environment around the dying patient. They are also
anxious to ensure privacy for the family. When time allows and it is available,
they will move the patients to a single room. They will also pull the curtains
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around the patient and family even if this leaves the patient unobserved by
staff. This is more likely to happen when the nurse is more experienced and
more confident.
Then we also tried someway, yes, just how it would be possible in ICU
to create a calmer atmosphere. We switched on the lamp on the
bedside table, and not the neon light that highlights everything flashy.
Yes, so that it would look a little bit comfortable. … So partly we have
had really crazy ideas. We took a mobile lamp from the operating
theatre … and we did put it into the patients’ room, somehow behind
the curtain and then we switched off all the other lights. So it was
somewhat dimmed light. And we provided chairs for the family
members. And we asked them if they would like something to drink.
And we told them, to come to us in case they would need anything
else. And (we added), also if they would feel bad (Germany 7).
The second aspect of emotional holding is comfort giving.
8.2.2 Comfort giving
Comfort giving is focused on reducing the suffering of patients and their
families. In doing so, nurses draw attention to the need for pain relief and
comfort measures for patients. They remind doctors where necessary to
continue to pay attention to the dying patient’s needs for example, they query
with doctors the most appropriate forms of pain relief necessary for individual
patients. Where doctors are perceived to have sole authority over (their)
patients, challenging doctors’ decisions is made more difficult. However,
nurses believe that they have a moral obligation to act.
Watching people in pain is something that I don't like to work with; this
just doesn't exist for me. So I go to the ultimate consequences, I speak
to whomever I need to speak, but this is usually not an easy process in
a private hospital - to assure that this patient has comfort, but I have to
be aware that I did the best I could so that the patient may have a good
death. (Brazil 11)
Comfort giving also include physical acts such as offering alternative
diets, keeping good hygiene care, washing and dressing patients.
and getting them positioned right and all the basic things that aren’t
necessary people say basic but important. I still cream the lips, I (use)
Vaseline.” (Ireland 9)
Nurses talk to patients who may be unconscious, position them,
ensuring that they seem comfortable. Comfort giving is also focused on
avoiding distress to the family. Where patients’ perceived suffering triggers
distress in relatives nurses are anxious to manage symptoms in order to
reduce suffering and distress.
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Nurses also perform acts of service for families. Comfort giving
encompasses practical arrangements as well as very personal and intimate
gestures of support. Where the situation prompts it, nurses will arrange for the
involvement of other professionals such as pastoral care and social workers.
They may encourage and support family members to touch the patient, hold
their hand or caress their head. They show the family:
how they can contribute be it simply washing the patient’s face or
washing the patient’s hands or encouraging them to hold the patient’s
hand even though yourself you might not be convinced it is of any
benefit but you realise that it is a lot of benefit to the family member
and indeed maybe some benefit to the patient. (Ireland 8)
[...] To learn that sometimes you can remain silent with the patient, but
that your presence, your attitude, your look, your touch, can be highly
beneficial to these families. (Brazil 5)
Cultural norms influence who provides the comfort. Nurses are very
conscious of the comfort that many families find in religious belief and ritual.
They will appeal to religious rituals and prayers to help the family to accept
their loved one’s death even if they themselves do not believe that it is part of
their job to do so.
The family does not know if they cry, if they hold the patient’s hand -
it’s a very difficult moment. For those outside this emotional situation,
you watch, you can notice things and normally you wonder if they are
religious, if so, I wonder if they want to pray, and generally they accept
it right now and then we make a prayer ... We have the impression they
become more centered. (Brazil 10)
You are in a room with a dying relative, a mother for example, and
somebody says to you ‘we will pray, we will start the rosary’ and
suddenly your thoughts are ‘hang on a second I don’t feel it is my place
to say the rosary’ This isn’t part of my job but yet you might do it
because you think this could be a help to the family, so you do it.
(Ireland 8)
Comfort giving extends beyond death since nurses are very sensitive to
the needs of the bereaved family. For example, they remove any tubes, wash
the patient, comb the patient’s hair and make the patient look as well as they
can.
9. Discussion
Previous research relating to nurses’ role in EoL decision-making in ICU
has detailed the roles nurses assume in transitions from ‘cure’ to ‘care’ and
the processes of ‘negotiated dying’ (Long-Sutehall et al 2011) they engage in.
The focus of a ‘peaceful’ death and nurses’ attempts to overcome the
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dehumanizing aspects of ICU are well documented. Nurses’ roles in brokering
and mediating information and providing support to doctors and family
members have been described in other studies (Adams et al 2011). Previous
research also draws attention to the emotional labour involved in EoL care
and decision-making (Coombs et al 2010) and in the potential for moral
distress (Oberle and Hughes 2001, Daly et al 2004). The idea of
‘reconnecting’, identified by Simpson (1997), as a core category is in accord
with the findings from our study where nurses attempted to counter the
dehumanizing impact of a highly technical environment and to prioritise a
peaceful death when cure is not longer possible.
Our core category of negotiated reorienting resonates with previous
research that details the active role of ICU nurses in enabling ethical EoL
decision-making. The roles identified by Adams (et al 2011), for example, of
nurse as information broker, supporter and advocate appear to be
components of the practices of consensus seeking and emotional holding.
Similarly, the importance of taking cultural and religious values into account is
as relevant to our study as to earlier studies (Thelen 2005, Morgan 2008,
Latour et al 2009).
The sub-core categories of consensus seeking and emotional holding suggest
are in accord with literature relating to, for example, compassion in care,
emotional labour, nurses’ autonomy in EoL care contexts and the influence of
religious beliefs on nursing practices.
Our theory is designed to enable ICU nurses to support ICU teams and
families to reach consensus, to derive comfort and to have judicious
information-giving. This is in keeping with scholarship in care ethics (for
example, Roach 1984, Leget et al 2011) and current initiatives to develop
compassionate care (see, for example, UK Department of Health 2012).
Previous research on emotional labour highlights the demands on ICU nurses
as they negotiate with colleagues and families to reorientate towardsan EoL
decision that is considered compassionate for patients and families (Stayt
2009).
Recent work on compassion points also to the need for attention to self-
awareness and self-care. In their discussion of ‘learning to be with the
suffering of others’, Austin et al (2013) write of the importance of education
that facilitates ‘reflection upon emotions, attitudes and experiences’ and of a
view of compassion that ‘the ability to sit with people in darkness because you
know your own darkness’ (ibid p.185). As suggested by our theory, nurses’
personal, cultural and religious perspectives on EoL issues contribute to their
ability to respond effectively to patients and families during the dying process.
The need to have ‘hospitable, habitable health care environments’ with a
terrain that is compassionate, humane and dignifying is highlighted as
important ‘so that health professionals will feel safe to be compassionate, not
overwhelmed and failing in their efforts to be so’ (Austin et al p.187). There is
also a need for ‘shelter’ for health professionals in the form of ‘timely breaks,
quiet time for reflection on self and practice, team retreats and supportive
supervision’ (ibid p.190).
10. Conclusions
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This study highlights the importance ICU nurses bestow on relationships
and dialogue in EoL decision-making and care. In all five cultures, despite
some differences regarding perceptions of nurse autonomy, ICU nurses are
actively engaged in negotiating a reorientation from cure to care and towards
a broader holistic care orientation. They engage in negotiated reorienting
which through consensus seeking and emotional holding enables a
consensus to be reached in relation to EoL care. Importantly, the theory
suggests how patients and families may be facilitated to have experience of a
good death in a technologically focused environment. Despite the challenges
of working in an environment that is focused on treatment and cure, the theory
suggests that nurses stay focused on the needs and suffering of patients and
families.
The theory suggests that nurses have a clearly articulated role to play in
EoL decision-making. Further it suggests the complexity of their role in an
area of practice that is medically-dominated. The theory suggests the value of
culturally sensitive multi-professional EoL ethics education and ethics support.
As highlighted earlier, ethical and clinical EoL decision-making are inextricably
connected and confidence and confidence in area could be enhanced. Future
research could interrogate further the impact of nurses’ cultural and religious
perspectives on EoL decision-making. This research highlighted resource
constraints and lack of availability of palliative care in Palestine. In Brazil
palliative care is not a compulsory component of health professional
education and it was suggested by German colleagues that nurses who were
more competent in palliative care were more comfortable with EoL decision-
making. The research also identified a need for nurses and nursing
organisations to advocate for the interests of patients and families where
these services are under-developed.
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