End-of-life care in the critical care setting: Nurses’ practices and factors affecting these practices Kristen Louise Ranse BNurs (Hons) MCritCare Nursing Submitted in fulfilment of the requirements of the degree of Doctor of Philosophy (PhD) School of Nursing and Midwifery Institute of Health and Biomedical Innovation Queensland University of Technology February 2013
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End-of-life care in the critical care setting:
Nurses’ practices and factors affecting these practices
Kristen Louise Ranse BNurs (Hons) MCritCare Nursing
Submitted in fulfilment of the requirements of the degree of
Doctor of Philosophy (PhD)
School of Nursing and Midwifery
Institute of Health and Biomedical Innovation
Queensland University of Technology
February 2013
ii
Keywords
End of life, practices, critical care, intensive care, nurse, PARIHS framework,
exploratory factor analysis, general linear model, palliative values, patient and family
centred care, preparedness
iii
Abstract
Background
Critical care units are designed and resourced to save lives, yet the provision of end-
of-life care is a significant component of nursing work in these settings. Limited
research has investigated the actual practices of critical care nurses in the provision
of end-of-life care, or the factors influencing these practices. To improve the care
that patients at the end of life and their families receive, and to support nurses in the
provision of this care, further research is needed. The purpose of this study was to
identify critical care nurses’ end-of-life care practices, the factors influencing the
provision of end-of-life care and the factors associated with specific end-of-life care
practices.
Methods
A three-phase exploratory sequential mixed-methods design was utilised. Phase one
used a qualitative approach involving interviews with a convenience sample of five
intensive care nurses to identify their end-of-life care experiences and practices. In
phase two, an online survey instrument was developed, based on a review of the
literature and the findings of phase one. The survey instrument was reviewed by six
content experts and pilot tested with a convenience sample of 28 critical care nurses
(response rate 45%) enrolled in a postgraduate critical care nursing subject. The
refined survey instrument was used in phase three of this study to conduct a national
survey of critical care nurses. Descriptive analyses, exploratory factor analysis and
univariate general linear modelling was undertaken on completed survey responses
from 392 critical care nurses (response rate 25%).
Results
Six end-of-life care practice areas were identified in this study: information sharing,
environmental modification, emotional support, patient and family-centred decision
making, symptom management and spiritual support. The items most frequently
identified as always undertaken by critical care nurses in the provision of end-of-life
care were from the information sharing and environmental modification practice
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areas. Items least frequently identified as always undertaken included items from the
emotional support practice area.
Eight factors influencing the provision of end-of-life care were identified: palliative
values, patient and family preferences, knowledge, preparedness, organisational
culture, resources, care planning, and emotional support for nurses. Strong agreement
was noted with items reflecting values consistent with a palliative approach and
inclusion of patient and family preferences. Variation was noted in agreement for
items regarding opportunities for knowledge acquisition in the workplace and formal
education, yet most respondents agreed that they felt adequately prepared. A context
of nurse-led practice was identified, with variation in access to resources noted.
Collegial support networks were identified as a source of emotional support for
critical care nurses.
Critical care nurses reporting values consistent with a palliative approach and/or
those who scored higher on support for patient and family preferences were more
likely to be engaged in end-of-life care practice areas identified in this study. Nurses
who reported higher levels of preparedness and access to opportunities for
knowledge acquisition were more likely to report engaging in interpersonal practices
that supported patient and family centred decision making and emotional support of
patients and their families. A negative relationship was identified between the
explanatory variables of emotional support for nurses and death anxiety, and the
patient and family centred decision making practice area. Contextual factors had a
limited influence as explanatory variables of specific end-of-life care practice areas.
Gender was identified as a significant explanatory variable in the emotional and
spiritual support practice areas, with male gender associated with lower summated
scores on these practice scales.
Conclusions
Critical care nurses engage in practices to share control with and support inclusion of
families experiencing death and dying. The most frequently identified end-of-life
care practices were those that are easily implemented, practical strategies aimed at
supporting the patient at the end of life and the patient’s family. These practices
arguably require less emotional engagement by the nurse. Critical care nurses’
v
responses reflected values consistent with a palliative approach and a strong
commitment to the inclusion of families in end-of-life care, and these factors were
associated with engagement in all end-of-life care practice areas. Perceived
preparedness or confidence with the provision of end-of-life care was associated with
engagement in interpersonal caring practices. Critical care nurses autonomously
engage in the provision of end-of-life care within the constraints of an environment
designed for curative care and rely on their colleagues for emotional support. Critical
care nurses must be adequately prepared and supported to provide comprehensive
care in all areas of end-of-life care practice. The findings of this study raise important
implications, and informed recommendations for practice, education and further
research.
vi
Contents
Keywords .................................................................................................................... ii Abstract ...................................................................................................................... iii Contents ..................................................................................................................... vi List of Tables .............................................................................................................. x List of Figures .......................................................................................................... xiii List of Abbreviations .............................................................................................. xiv Statement of Original Authorship .......................................................................... xv Grants and Publications ......................................................................................... xvi Acknowledgements ................................................................................................. xvii 1 INTRODUCTION ............................................................................................ 1
1.1 Purpose ............................................................................................................... 5 1.2 Structure of this thesis ........................................................................................ 6
2 LITERATURE REVIEW ................................................................................ 8 2.1 Introduction ........................................................................................................ 8 2.2 Critical care nurses’ end-of-life care practices ................................................... 8
2.2.1 Patient and family centred decision making ............................................... 9 2.2.2 Communication and continuity of care .................................................... 10 2.2.3 Emotional and practical support .............................................................. 11 2.2.4 Symptom management and comfort care .................................................. 12 2.2.5 Spiritual support ....................................................................................... 12
2.3 Factors influencing the provision of end-of-life care ....................................... 13 2.4 End-of-life care in the critical care setting—Context ....................................... 15
2.5 End-of-life care in the critical care setting—Evidence .................................... 19 2.5.1 Research ................................................................................................... 19 2.5.2 Nurse practice knowledge ........................................................................ 20 2.5.3 Patient and family preferences ................................................................. 22
2.6 End-of-life care in the critical care setting—Facilitation ................................. 23 2.6.1 Emotional support for nurses ................................................................... 24 2.6.2 Nurses’ end-of-life care values and beliefs .............................................. 25 2.6.3 Coordination of care delivery ................................................................... 25
4 PHASE ONE METHODS .............................................................................. 34 4.1 Introduction ...................................................................................................... 34 4.2 The setting ........................................................................................................ 34 4.3 Participants ....................................................................................................... 35 4.4 Method of data collection ................................................................................. 35 4.5 Procedure .......................................................................................................... 36
vii
4.6 Data management and analysis ........................................................................ 37 4.7 Summary........................................................................................................... 39
5 PHASE ONE FINDINGS............................................................................... 40 5.1 Introduction ...................................................................................................... 40 5.2 Participant characteristics ................................................................................. 40 5.3 Category: Beliefs about end-of-life care .......................................................... 41
5.3.1 Value of participating in end-of-life care ................................................. 42 5.3.2 Complexity of end-of-life care .................................................................. 43
5.4 Category: End-of-life care in the intensive care context .................................. 44 5.4.1 Organisational support ............................................................................. 45 5.4.2 Modifying the bedside environment .......................................................... 46
5.5 Category: Facilitating end-of-life care ............................................................. 49 5.5.1 Uncertainty and ambiguity ....................................................................... 49 5.5.2 Emotional intensity ................................................................................... 50 5.5.3 Comfort care ............................................................................................. 54 5.5.4 Humanising the patient ............................................................................. 55 5.5.5 Facilitating the family’s experience ......................................................... 57
6 PHASE TWO METHODS............................................................................. 67 6.1 Introduction ...................................................................................................... 67 6.2 Development of the survey instrument............................................................. 67
6.2.1 Critical care nurses’ end-of-life care practices ....................................... 68 6.2.2 Factors influencing the provision of end-of-life care ............................... 70 6.2.3 Demographic information ........................................................................ 72
6.3 Expert panel ...................................................................................................... 72 6.3.1 Participants .............................................................................................. 72 6.3.2 Procedure ................................................................................................. 73 6.3.3 Data management and analysis ................................................................ 74
6.4 Pilot test ............................................................................................................ 74 6.4.1 The setting and sample ............................................................................. 75 6.4.2 Procedure ................................................................................................. 75 6.4.3 Data management and analysis ................................................................ 76
6.5 Summary........................................................................................................... 76 7 PHASE TWO RESULTS ............................................................................... 77
7.1 Introduction ...................................................................................................... 77 7.2 Expert panel ...................................................................................................... 77 7.3 Pilot test ............................................................................................................ 84
7.3.1 Demographic information ........................................................................ 88 7.3.2 Critical care nurses’ end-of-life care practices ....................................... 91 7.3.3 Factors influencing the provision of end-of-life care ............................... 98
7.4 Summary......................................................................................................... 108 8 PHASE THREE METHODS ...................................................................... 110
8.1 Introduction .................................................................................................... 110 8.2 The setting and sample ................................................................................... 110 8.3 Procedure ........................................................................................................ 111 8.4 Data management and analysis ...................................................................... 112
9.5.1 Exploratory factor analysis: Critical care nurses’ end-of-life care practices .................................................................................................. 129
9.5.2 Exploratory factor analysis: Factors influencing the provision of end-of-life care ............................................................................................... 136
9.6 Bivariate analysis............................................................................................ 145 9.6.1 Bivariate analysis of critical care nurses’ end-of-life care practices
summated scales and demographic variables ........................................ 147 9.6.2 Bivariate analysis of critical care nurses’ end-of-life care practices
summated scales and factors influencing the provision of end-of-life care summated scales ............................................................................. 153
9.7 Multivariable analysis .................................................................................... 156 9.7.1 Information sharing practices model ..................................................... 156 9.7.2 Environmental modification practices model ......................................... 157 9.7.3 Emotional support practices model ........................................................ 158 9.7.4 Patient and family centred decision making practices model ................ 159 9.7.5 Symptom management practices model .................................................. 160 9.7.6 Spiritual support practices model ........................................................... 162
10 DISCUSSION ................................................................................................ 168 10.1 Introduction ............................................................................................ 168 10.2 What are the most frequently reported end-of-life care practices of
Australian critical care nurses? ....................................................................... 168 10.3 What are the factors influencing the provision of end-of-life care as
perceived by Australian critical care nurses? ................................................. 174 10.3.1 Context ............................................................................................... 174 10.3.2 Evidence ............................................................................................. 177 10.3.3 Facilitation ......................................................................................... 181
10.4 What factors are associated with Australian critical care nurses’ end-of-life care practices? ..................................................................................... 186
13.1 QUT research ethics approval—Phase one ............................................ 232 13.2 QUT research ethics approval—Phases two and three ........................... 234 13.3 ACT health ethics approval .................................................................... 236 13.4 Email indicating support for phase three of the study from the
Australian College of Critical Care Nurses .................................................... 238 13.5 Phase one bulletin board advertisement ................................................. 239 13.6 Phase one information sheet and consent form ...................................... 240 13.7 Email invitation to experts to participate in the survey review panel .... 242 13.8 Information sheet for expert panel .......................................................... 243 13.9 Phase two pilot test email invitation, email reminder and email retest
invitation ......................................................................................................... 245 13.10 Phase three email invitation and email reminder .................................... 247 13.11 Information sheet attached to email invitation to participate (phase
two pilot test and phase three) ........................................................................ 249 13.12 Final version of survey instrument (Word document version) ............... 251 13.13 Participant responses as a percentage of the sample, means and
standard deviations for each item in the Critical care nurses’ end-of-life care practices section of the survey instrument (n = 392) ............................. 262
13.14 Participant responses as a percentage of the sample, means and standard deviations for each item in the Factors influencing the provision of end-of-life care section of the survey instrument (n = 392) ....................... 265
13.15 Structure matrix for exploratory factor analysis with oblique rotation—Critical care nurses’ end-of-life care practices ............................. 269
13.16 Structure matrix for exploratory factor analysis with oblique rotation—Factors influencing the provision of end-of-life care .................... 272
x
List of Tables
Table 5-1: Phase one participant characteristics ........................................................ 40
Table 5-2: Categories and subcategories developed from phase one interview
data ............................................................................................................ 41
Table 6-1: Comparison of Clarke et al.’s (2003) domains of end-of-life care,
subcategories developed from phase one interview data and initial a
priori scales in the Critical care nurses’ end-of-life care practices
section of the survey instrument ............................................................... 69
Table 6-2: Domains and associated a priori scales in the Factors influencing the
provision of end-of-life care section of the survey instrument ................. 70
Table 7-1: Expert panel members .............................................................................. 78
Table 7-2: Content validity index for each item (I-CVI) in the Critical care
nurses’ end-of-life care practices section of the survey instrument ......... 78
Table 7-3: Content validity index for each item (I-CVI) in the Factors
influencing the provision of end-of-life care section of the survey
I have learnt from other nurses how to provide EOLC .15 .20 –.11 .15 .15 .15 –.00 .14 .18
In my Unit, families are given adequate time to consider decisions to withhold/withdraw treatment for the patient –.02 –.12 –.76 .02 –.04 .03 .07 –.01 .57
In my Unit, family meetings with the health care team are held to resolve differing views about a patient’s treatment .08 –.15 –.71 .04 –.02 .09 .05 –.04 .58
In my Unit, the patient’s preferences (or their likely preference according to family) for EOLC are considered .12 –.03 –.57 –.07 –.01 .27 .09 .10 .49
In my Unit, families are involved in decisions about the dying patient .05 .07 –.53 .11 –.07 .08 –.03 .10 .39
In my Unit, withdrawal of treatment is delayed whilst waiting for relatives of the patient to arrive –.08 .12 –.50 .05 .10 .02 –.04 –.01 .29
When a patient dies in my Unit, families have sufficient time to spend with the patient .19 –.06 –.33 .27 –.15 .04 –.21 –.10 .42
I am often exposed to death in the critical care environment .04 .17 –.21 –.02 .20 .02 –.05 –.04 .13
Abrupt withdrawal of mechanical ventilation may contribute to dyspnoea –.03 .19 –.19 .04 .14 –.07 .03 –.12 .14
The physical environment of my Unit is ideal for providing EOLC –.09 –.04 .06 .77 –.05 –.07 .02 –.02 .54
My Unit is adequately equipped to support the comfort needs of the family during EOLC –.14 .01 –.07 .73 –.02 .01 .11 –.00 .53
Private rooms are available to care for the patient at the EOL –.01 .13 .04 .71 .10 –.01 .02 .05 .48
My Unit is adequately staffed for providing the needs of dying patients and their families .13 –.18 –.21 .59 –.03 –.04 –.03 –.13 .56
When a patient dies in my Unit, nurses have sufficient time to spend with the family .23 –.22 –.27 .37 –.10 –.01 –.21 –.37 .62
In my Unit, nurses that know the patient and family are allocated to care for the patient to maintain continuity… .19 .05 –.03 .28 –.18 .12 .14 .12 .29
Following a decision to withhold or withdraw treatment, patients remain in my Unit for EOLC .07 .22 –.06 .27 –.08 .09 –.02 –.01 .18
After a decision is made to withdraw treatment, less time is spent with the patient by the critical care medical team .00 .01 –.01 –.06 .75 –.13 –.10 –.08 .61
After a decision is made to withdraw treatment, nurses are left to manage the care of the patient –.03 –.02 .05 –.01 .72 –.15 –.03 –.09 .57
In my Unit, EOLC is mostly allocated to junior nurses –.09 –.12 –.02 –.04 .32 –.15 .10 .14 .21
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Items
Factor loadings
h2 1 2 3 4 5 6 7 8
After a decision is made to withdraw treatment, I spend less time with the patient .13 –.21 .15 .02 .32 .16 –.28 .12 .35
The medical staff support EOLC for dying patients in my Unit .08 .01 –.17 –.04 –.117 .55 –.07 –.09 .45
In my Unit, when a diagnosis with a likely poor outcome is made, families are informed of EOLC options –.00 –.04 –.30 –.02 –.17 .53 .07 –.02 .48
In my Unit, the team expresses its opinions, values and beliefs about providing care to dying patients .20 .04 .01 .01 –.04 .51 .01 –.03 .38
All members of the healthcare team in my Unit agree with and support EOLC when it is implemented .08 .09 –.07 .19 –.00 .47 –.18 –.04 .38
In my Unit, a plan of care for the patient is clearly documented by the medical team .01 –.09 –.17 .11 –.24 .43 –.01 –.10 .40
In my Unit, the critical care team and the patient’s primary medical or surgical team agree on a plan of care .06 –.03 –.21 .06 –.14 .42 .00 –.04 .34
The provision of EOLC requires emotional detachment .04 .22 .06 –.02 –.21 –.24 –.12 –.09 .17
I have received in-service education that assists me to support and communicate with families of dying patients .15 –.20 .13 .05 .06 .26 .57 –.28 .60
I have received in-service education that assists me to provide care and manage patient symptoms at the EOL .11 –.23 .16 .08 .04 .22 .54 –.33 .57
I draw on evidence from the literature to provide EOLC to patients and their families .02 .08 –.25 –.02 –.07 –.10 .43 –.13 .33
My postgraduate nursing education included EOLC content relevant to the critical care context .16 .04 .05 .05 –.04 .04 .43 –.01 .26
Patients at the EOL require little nursing care –.07 .21 –.17 –.20 –.21 –.16 .34 .01 .31
My undergraduate nursing education included EOLC content .12 .01 .12 .13 .04 .01 .28 .02 .14
There are policies/guidelines to assist in the delivery of EOLC in my Unit .16 –.01 –.00 .11 –.03 .26 .28 .04 .26
When withdrawing mechanical ventilation at the EOL, ventilator weaning should occur… –.01 .03 –.05 .00 .04 –.12 .27 –.01 .09
Intravenous fluids should be provided to maintain hydration for the patient at the EOL –.02 .02 –.03 .05 –.10 .06 .23 –.03 .08
I feel adequately prepared to care for patients at the EOL .02 .06 –.02 .03 .07 .08 .08 –.67 .52
I don’t know what to say to the family of a patient at the EOL .00 .06 .04 .05 –.02 –.02 .05 –.64 .45
I have limited knowledge of symptom management for patient’s at the EOL –.06 .07 .07 –.02 .10 .05 .07 –.52 .29
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Items
Factor loadings
h2 1 2 3 4 5 6 7 8
I feel a sense of personal failure when a patient dies .15 .14 –.09 –.13 –.11 –.06 –.08 –.29 .22
α .85 .70 .79 .81 .64 .80 .66 .69
Note. Factor loadings > .30 are in boldface; EOL = end of life; EOLC = end-of-life care.
143
Table 9-9: Factor correlation matrix for the Factors influencing the provision of
end-of-life care section of the survey instrument
Factor 1 2 3 4 5 6 7 8
1 1.00 .01 –.20 .32 –.23 .29 .13 –.20
2 .01 1.00 –.22 –.05 .04 –.02 .08 –.33
3 –.20 –.22 1.00 –.19 .14 –.21 .00 .17
4 .32 –.05 –.19 1.00 –.13 .24 .10 –.07
5 –.23 .04 .14 –.13 1.00 –.02 –.07 .14
6 .29 –.02 –.21 .24 –.02 1.00 .05 –.02
7 .13 .08 .00 .10 –.07 .05 1.00 –.13
8 –.20 –.33 .17 –.07 .14 –.02 –.13 1.00
Most of the scales achieved a satisfactory Cronbach’s alpha of greater than .70.
Factor one, consisting of six items, represented the latent construct labelled
emotional support for nurses.
Deletion of two items from factor two that do not conceptually fit within this scale
(Pressure area care should continue to be provided for a patient at the end of life
and My own personal experiences of death have influenced the care I provide to
patients at the end of life and their family) increases the alpha of this factor to .73.
The five remaining items in factor two represented the latent construct labelled
palliative values.
Factor three consisted of six items and was labelled patient and family preferences.
The five items in factor four represented the latent construct labelled resources.
Initially, four items loaded on factor five. The item After a decision is made to
withdraw treatment, I spend less time with the patient refers to the self, as opposed to
the other items on factor five, which refer to the larger organisational culture.
Deletion of this item increases the alpha of this scale to .69. The three items in factor
five reflected the latent construct labelled organisational culture.
144
Factor six comprised six items reflecting support for end-of-life care and organising
a plan of care. These items represented the latent construct labelled care planning.
Factor seven was labelled knowledge, to represent the content of the four items that
loaded on this factor. The item Patients at the end-of-life require little nursing care
was conceptually a poor fit with the other items that loaded on factor seven. Deletion
of this item from the scale resulted in an increase of the alpha to .69.
Lastly, the label preparedness was chosen for factor eight to represent the latent
construct measured by the three items in this factor.
Table 9-10: Final factors, labels and Cronbach’s alpha for the Factors
influencing the provision of end-of-life care section of the survey instrument
Factor Label Items α
1 Emotional support for nurses 6 .85
2 Palliative values 5 .73
3 Patient and family preferences 6 .79
4 Resources 5 .81
5 Organisational culture 3 .69
6 Care planning 6 .80
7 Knowledge 4 .69
8 Preparedness 3 .69
Death Anxiety Scale
The internal consistency of the DAS in the current study is the same as that reported
by Templer (1970), who developed the true-false version of DAS (Cronbach’s alpha
.76). McMordie (1979) revised and tested the DAS using a seven-point Likert scale
response format and achieved a slightly higher Cronbach’s alpha of .84. A five-point
Likert scale was utilised in the current study to maintain consistency in response
format across all items in the survey instrument.
145
9.6 Bivariate analysis
The psychometric properties of each of the summated scales generated from EFA are
provided in Tables 9–11 and 9–12. The summated scales from the Critical care
nurses’ end-of-life care practices section of the survey instrument formed the
outcome (dependent) variables in all bivariate and multivariable analysis. The
descriptive statistics and histogram for each of these scales were reviewed to
determine if they met the assumption of normal distribution. An example of the
histogram for the information sharing summated scale is provided in Figure 9–4.
Table 9-11: Psychometric properties of the summated scales from the Critical
care nurses’ end-of-life care practices section of the survey instrument (n = 392)
instrument developed in the current study includes items to identify nurses’ self-
report of frequency of actual end-of-life care practices and their agreement with
factors that can influence end-of-life care. A rigorous process of instrument
development was undertaken in the current study. The development of a robust
survey instrument that is reliable and valid is a time-consuming process. However,
investment of time in developing the instrument by conceptualising the domains of
interest and generating items contributes to the content validity of the instrument
(Polit & Beck, 2006; Polit et al., 2007).
Review of the survey instrument by an expert panel and collection of relevance
ratings by experts for each item in the survey instrument permitted the calculation
and assessment of the content validity of individual items (I-CVI) as well as the
entire instrument (S-CVI) (Polit et al., 2007). Content validity index (CVI) is widely
used by nurse researchers and is easily calculated (Beckstead, 2009; Polit et al.,
196
2007). Another strength of the CVI is that it measures agreement amongst experts
regarding the relevance of items as opposed to the internal consistency between
ratings provided (Polit et al., 2007). It has been noted in the literature that
computation methods of CVI do not account for chance agreements (Beckstead,
2009; Lynn, 1986; Polit & Beck, 2006; Polit et al., 2007). However Polit et al. (2007)
note that members of the expert panel are selected for their expertise and it is
anticipated that they provide considered responses regarding the relevance of each
item, not a random response. In the current study, six experts were included on the
panel ensuring an adequate sample size to appropriately identify items as relevant
(Lynn, 1986; Polit & Beck, 2006). The collapse of relevance rating categories into
dichotomous categories during calculation of CVI has been criticised for loss of
information (Beckstead, 2009; Polit & Beck, 2006; Polit et al., 2007). However this
method of data management eases computation of CVI and the initial data collected
on the 4-point rating scale can be reviewed for identification of items that may need
revision (Polit et al., 2007). Lastly, Polit and Beck (2006) identify a lack of detail in
nursing literature regarding computational methods used in CVI obscuring the results
provided. Consistent with Polit and Beck’s (2006) recommendations, the methods
used to calculate both I-CVI and S-CVI have been clearly articulated in this thesis.
In addition to review of the survey instrument by an expert panel, completion of a
pilot study enabled preliminary assessment of the psychometric properties of the
survey instrument. The pilot test also tested the feasibility of some of the methods
used in phase three of this study, including data collection, management and analysis.
The results of the expert review and pilot study informed revisions to the survey
instrument and study methods.
Regression models are derived from the variables included in the analysis (Hair et
al., 2006). The latent constructs identified following EFA of participant responses to
the survey instrument in the current study are derived from the items included in the
content of the survey instrument. Practice is a complex, multidimensional
phenomenon and only a limited number of items could be included in the survey
instrument. Therefore, there is a potential for selection bias influencing the
identification of latent constructs. Although a rigorous process of item selection,
instrument development and EFA was undertaken to create the summated scales
197
included in the multiple regression model, it is possible that aspects of practice or
factors influencing practice may not be captured within the models generated in this
study, potentially biasing the models and regression coefficients obtained (Hair et al.,
2006). Additional latent constructs of end-of-life care practices and factors
influencing these practices may exist and may not have been identified. For example,
the items encourage the family to touch the patient and encourage the family to talk
to the patient loaded together during EFA, but were not accepted as a factor because
no other items loaded on the factor. The items are conceptually similar and perhaps
represent a latent construct not adequately covered by the items in the instrument.
Convenience samples were utilised in all phases of this study, and the strengths and
limitations of this sampling approach as well as the samples obtained must be
acknowledged and considered in the interpretation of the findings of the study.
Convenience samples are a time-efficient method of recruiting potential participants.
However, participant self-selection may potentially bias the sample because those
that choose to participate may be characteristically different from those who choose
not to participate. Thus, a convenience sample may not reflect the wider population
that they are recruited to represent (Schneider, Elliott, LoBiondo-Wood, & Haber,
2003).
Although phase one of this study used a small sample of participants, the aim of
phase one was not to generalise the findings, but to provide evidence of the current
experience and practices of critical care nurses in the provision of end-of-life care, to
inform the development of a survey instrument of critical care nurses’ end-of-life
care practices and factors influencing these practices. Thus, the sampling strategy
was deemed appropriate for the purpose of this phase of the study. However, the
sample was limited to critical care nurses working in one ICU. Inclusion of critical
care nurses employed in other settings, such as emergency departments, could
provide other insights into critical care nurses’ end-of-life care experiences and
practices not identified in phase one of this study. The variation noted in participant
responses to items in the emotional support and symptom management practice areas
according to workplace may not reflect a lack of engagement in these practices, but
rather engagement in other practices not captured in the current survey instrument.
198
Comparison of the demographic profile of participants in phase three of this study
with the demographic information available from the Nursing and Midwifery Labour
Force 2009 (AIHW, 2011) survey and the Intensive Care Resources & Activity:
Australia & New Zealand 2007/2008 (Drennan et al., 2010) report assisted in
identifying similarities and differences between the participants in phase three of this
study and the national intensive care nurse and registered nurse populations. In
addition, comprehensive description of the sample assists in determining the
applicability and generalisability of the findings to other populations, and identifying
areas for further research using new samples. The average age of participants in
phase three of this study was similar to the national average (43.1 years v. 44.3
years) (AIHW, 2011). Although the proportion of males in this survey was larger
than the national proportion of males registered as a nurse (13.5% v. 9.6%), it was
consistent with current workforce figures of males employed in critical care and
emergency settings (13.3%) (AIHW, 2011). The phase three sample had a high
proportion of participants (90.3%) who had completed or were currently undertaking
formal education in critical care. These figures are much larger than the proportion of
registered nurses with critical care qualifications (56.1%) in the Intensive Care
Resources & Activity: Australia & New Zealand 2007/2008 (Drennan et al., 2010)
report. In addition, in the current study, only 55.1% of participants identified clinical
work as their primary role compared with the findings of the Nursing and Midwifery
Labour Force 2009 (AIHW, 2011) survey in which 77.7% of nurses identify their
main nursing job as a clinical position. These variations in critical care qualifications
and primary nursing role of participants in the current study compared with the
national workforce statistics for general and critical care nurses (AIHW, 2011;
Drennan et al., 2010) is likely to reflect membership of the professional association
for critical care nurses, whose members are more interested in professional issues
and education than non-members.
Interestingly, although only 55.1% of participants in the current study identified
clinical work as their primary role, 74.5% of participants reported providing direct
patient care within the last week, indicating that most of the sample is currently
engaged in clinical work. In addition, of participants that had provided direct patient
care in the past 12 months, 95.5% reported providing end-of-life care. Thus, the
majority of participants had recent experience in the provision of end-of-life care in
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their workplace and their responses to the survey are less likely to be influenced by
recall bias.
Overall, there were some similarities and differences between the demographic
profile of critical care nurse participants in phase three of this study and the available
comparison population of Australian intensive care nurses (Drennan et al., 2010) that
need to be considered in interpreting the results of this study. However, the
differences may be insignificant as few demographic variables were identified as
explanatory variables in the end-of-life care practice models. For example, although
variation between the sample and comparable population was identified in regard to
formal education in critical care, this variable was not a significant explanatory
variable in any of the end-of-life care practice models.
In this study, data were collected via interviews in phase one and a web-based survey
in phases two and three. It has been acknowledged that an interview is a social
interaction and, as such, the researcher as interviewer contributes to and influences
the interaction (data collection) and the interpretation of the interaction (data
analysis) (Fontana & Frey, 2005). The interview is a mutually created, contextually
based account between the interviewer and interviewee (Fontana & Frey, 2005;
Silverman, 2006). Thus, the researcher cannot claim to be impartial or unbiased. The
researcher is a former employee of the study setting. The capacity of this
employment was as a registered nurse providing direct patient care. The position of
the researcher as a former registered nurse in the ICU assists in understanding the
context of the participants’ work. The researcher was aware of personal experience
as a registered nurse in intensive care and, when it was recognised that an assumption
was being made, a question was asked to clarify the meaning for the participant. In
addition, check-coding of transcripts by the supervisory team and presenting the
findings back to nurses in the study setting were specific measures undertaken to
enhance the dependability of the findings (Miles & Huberman, 1994).
Web-based surveys are both time- and cost-efficient methods of collecting data from
large numbers of participants. Web surveys are also time effective in eliminating data
entry requirements through the ability to export data from the survey software
directly into SPSS for data analysis (Sue & Ritter, 2007). Unfortunately, the exact
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response rate to the survey in phase three of this study could not be ascertained. Key
Survey version 7.3 was used in phase three of this study and the rules specified
during the development of the survey did not allow incomplete survey responses to
be recorded. Thus, the number of critical care nurses who accessed the survey or
only partially completed the survey is unknown. In addition, due to privacy
restrictions, the researcher was unable to track undelivered emails. However,
responses to the survey were maximised by careful consideration of the wording of
recruitment materials and the use of a reminder email to encourage participation. The
estimated response rate was 25%. This was comparable to a recent national postal
survey of pain assessment and management by Canadian critical care nurses in which
a response rate of only 24.5% was achieved despite three rounds of contact with
participants that included an initial invitation and two reminders (Luk & Rose, 2011).
Specific factors that may have contributed to the low response rate in this research
study include the length of the survey instrument and the topic under investigation.
The survey instrument was approximately four pages in length, and some
participants in the pilot test in phase two commented that the survey was quite
lengthy. However, the length of the survey instrument was necessary to permit
adequate coverage of the variables of interest to the study. End-of-life care may be a
confronting and emotive topic of nursing practice. This topic may engender interest
and participation for some and, conversely, may reduce participation by others.
A considered and rigorous approach to data analysis was maintained throughout this
study. The backward elimination approach to regression model building utilised in
phase three has been criticised for the potential to obtain a model that fits the sample
data rather than the broader population, thus limiting generalisability (Tabachnick &
Fidell, 2007). However, this approach is considered satisfactory for the purpose of
identifying the predictors of critical care nurses’ end-of-life care practices. Although
other plausible results may be obtained through alternate methods of data analysis,
the findings of this study were considered to have conceptual and/or theoretical
resonance. Replication of the current study using a new sample and CFA would
provide additional evidence of the reliability and validity of the survey instrument.
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The current study only considered the self-reported practices and views of critical
care nurses. Use of alternate data collection approaches may obtain differing results.
For example, analysis of actual practice through ethnographic methods may uncover
hidden practices not articulated or readily identified by critical care nurses in the
provision of end-of-life care. Overall, the findings of this study have contributed new
insight into critical care nurses’ engagement in the provision of end-of-life care and
new knowledge of the factors associated with nurse engagement in end-of-life care
practices, as well as preliminary evidence of the psychometric properties of a new
survey instrument.
10.6 Summary
In summary, practices related to environmental modification and information sharing
were the most frequently reported end-of-life care practices of Australian critical care
nurses in this study. Environmental modification and information sharing practices
are simple interventions for nurses to undertake in the provision of end-of-life care.
Practices related to the emotional support of patients at the end of life and their
relatives were the least frequently reported as always undertaken in the provision of
end-of-life care. The provision of end-of-life care may be emotionally confronting
for nurses, creating difficulties for interpersonal engagement of nurses with patients
at the end of life and their families.
The findings of this study revealed that the provision of end-of-life care is influenced
by the personal values of critical care nurses, with those reporting values consistent
with the palliative approach engaging in positive end-of-life care practices. The
latent construct of patient and family preferences was also a significant explanatory
in five of the six end-of-life care practice areas. Critical care nurses perceived that
they were prepared to provide end-of-life care despite limited opportunities for
knowledge acquisition. Knowledge and preparedness were associated with critical
care nurses engaging in the interpersonal practices of patient and family centred
decision making and emotional support of the patient and family. In contrast, critical
care nurses requiring emotional support and those with higher death anxiety reported
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lower engagement practices pertaining to care of the family. Contextual factors had
limited influence as explanatory variables of end-of-life care practices areas.
However, a context of nurse-led practice was identified, with critical care nurses
drawing on their personal practice knowledge and initiative to construct a good
experience of end-of-life care for the patient and surviving family members.
A rigorous research approach and careful consideration of the strengths and
limitations of this study have been undertaken. The findings of this study contribute
to knowledge of critical care nurses’ end-of-life care practices. In addition, the
findings of this study identified variation in critical care nurse engagement in select
practices and the factors that contribute to explaining this variation.
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11 RECOMMENDATIONS AND CONCLUSIONS
11.1 Introduction
The findings of this three-phase exploratory sequential mixed methods study have
informed the development of a number of recommendations for practice, education
and further research to improve care of patients at the end of life and their families,
and support critical care nurses in the provision of this care. Overall, the findings of
this study provide new insight into the end-of-life care practices of critical care
nurses and contribute new knowledge of the specific factors associated with nurse
engagement in these practices.
11.2 Recommendations for practice
Six end-of-life care practice areas were identified in this study, with variation noted
in the frequency with which critical care nurses engage in end-of-life care practices.
The identification of strategies to both assist critical care nurses to engage in the
provision of end-of-life care and support them in this challenging role are essential in
providing optimal care to patients at the end of life and their families and
maintaining the emotional health and wellbeing of critical care nurses.
With less than half of all phase three participants reporting the availability of
guidelines or policy related to the provision of end-of-life care and the variation
identified in critical care nurse engagement in end-of-life care practices, it is
recommended that guidelines be developed that address each of the six practice areas
identified in this study. These end-of-life care guidelines could raise awareness of
interventions that could be implemented from all practice areas. In addition,
guidelines could assist less experienced and/or prompt busy nursing staff to provide
comprehensive nurse-led care to patients at the end of life and their families (Clarke
et al., 2004; Rose & Gidman, 2010). For example, inclusion of interventions to
provide emotional support to patients at the end of life and their families in end-of-
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life care guidelines could prompt increased engagement in these practices. However,
it is important to individualise care to meet the needs and preferences of the patients
and their families. Thus, guidelines must not be implemented in a prescriptive
manner whereby patients and families are expected to comply (Rose & Gidman,
2010). Instead, these guidelines should provide a platform for discussion of care
needs and preferences between the critical care nurse and the patient and family,
facilitating patient and family centred care.
Patient and family centred care during the provision of end-of-life care in critical
care settings has been recommended (Seymour, 2001; Truog et al., 2008). In the
current study, nurses with higher levels of agreement on the patient and family
preferences scale more frequently engaged in five out of the six end-of-life care
practice areas. Therefore, it is recommended that strategies to assist critical care
nurses to identify and support patient and family preferences could increase
engagement in end-of-life care practices. For example, following admission to a
critical care unit, early and ongoing regular communication is needed between the
patient, family and all members of the health care team regarding the patient’s
condition, possible outcomes and preferences for current and future care . These
discussions can smooth transitions if treatment plans change and assist in formulating
a shared position of what constitutes good end-of-life care (Boyle, Miller, & Forbes-
Thompson, 2005). Use of a family diary could also facilitate communication between
the family and health care team and across the health care team. In addition, within
individual critical care units, standardisation of documentation of patient and family
preferences on a patient care plan or flow chart would facilitate continuity of care
incorporating patient and family preferences between care providers.
It is recommended that palliative care nurses and/or critical care nurses with
expertise in the provision of end-of-life care be identified and available to provide
consultation to critical care nurses engaged in the provision of end-of-life care. These
expert nurses could share their practice knowledge and experiences and act as role
models in the practice of providing end-of-life care, promoting positive end-of-life
care attitudes and values among critical care nurses, and supporting less experienced
nurses in this care. The inclusion of palliative care consults in the critical care setting
has been reported in the literature (Campbell & Guzman, 2003; Hansen et al., 2009;
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O’Mahony et al., 2010). Evidence of the effectiveness of this intervention is limited
to reductions in time between identification of poor prognosis and implementation of
end-of-life care and decreased use of unnecessary treatment interventions, with
further research needed to ascertain improvements in overall quality of care.
The findings of this study indicate that environmental modification practices are
simple interventions for nurses to implement given the nurses’ personal initiative and
the availability of resources, including time and equipment. Variation in the
availability of resources for end-of-life care was also noted in this study. Although
critical care environments are designed for optimal surveillance of critically ill
patients and resourced to support curative care, strategies to optimise patient privacy
and the availability of appropriate resources to support the comfort of patients at the
end of life and their families are needed for the significant numbers of patients that
die in these settings. It is recommended that the availability of facilities for the
provision of end-of-life care, such as private rooms and family rooms, be considered
in the planning of new and redevelopment of existing critical care units. Lack of
privacy in critical care settings is a well-documented barrier to end-of-life care
(Bloomer et al., in press; Calvin et al., 2009; Fridh et al., 2009; Jackson et al., 2010;
McKeown et al., 2010). In addition, it is recommended that critical care units
develop resource kits to support patient and family comfort. Participants in phase one
of this study described a resource kit, developed by nursing staff, that contained
linen, lamps and cushions available for use during the provision of end-of-life care.
Hansen et al. (2009, p. 266) also reported use of a resource kit that included a quilt,
music compact discs, an envelope for a lock of hair and materials for creating a hand
print. These kits could also contain information for families such as bereavement
materials and available support services.
It is essential that emotional support be provided to critical care nurses experiencing
death and loss in the workplace. Without appropriate support, nurses may experience
stress and burnout (Shorter & Stayt, 2010). In particular, strategies to foster collegial
support networks are recommended as essential in critical care settings. The
importance of collegial support networks was identified by participants during phase
one of the current study. The value of these networks was further emphasised, with
the majority of participants in the national survey agreeing with items related to
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collegial support. Strategies to strengthen these informal support networks, relied
upon by so many critical care nurses for their emotional support needs, are essential
to ensure that the stress associated with the provision of end-of-life care does not
accumulate and lead to burnout. Strategies to formalise collegial support networks
could include rostering patterns and support for regular shared meal breaks to
support existing networks between colleagues. In addition, the development of buddy
systems for new and less experienced critical care nurses with more experienced
critical care nurses can provide interim support for these nurses until they establish
their own collegial support network in the workplace.
11.3 Recommendations for education
In this study, critical care nurses reporting higher agreement for values consistent
with a palliative approach were more likely to engage in all end-of-life care practice
areas. If critical care nurses’ personal values are at the core of their practice
intentions, then strategies to support the development of positive beliefs and attitudes
about the provision of end-of-life care can improve practice. Therefore, inclusion of
end-of-life content in critical care curricula and professional development activities
using a values-based education approach is recommended. Values-based education
and practice was originally developed and used in mental health practice (Fulford,
2011; McLean, 2012). The potential applicability of values-based practice in other
areas of health care has been acknowledged (Fulford, 2011). Values-based practice
recognises the centrality of the patient and family in care and aims to create
partnerships between health care providers and the patient and family through shared
understanding of the diversity of values present at any given time (McCarthy &
Grumley, 2010). Values-based education aims to develop awareness of one’s own
values through activities that encourage personal reflection, skills to identify and
consider the values of others and communication skills that can be used to support
participation in decision making and manage conflict (Fulford, 2011). A values-
based education approach could support the development of positive values towards
end-of-life care and communication skills, contributing to critical care nurses’
engagement in end-of-life care practices.
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The findings of the current study suggest that the provision of end-of-life care in the
context of critical care setting is largely nurse led. Yet, limited opportunities for
acquisition of knowledge to support the provision of end-of-life care were identified
by participants in this study. The frequency with which end-of-life care is provided
in critical care settings dictates that opportunities for education and discussion of
end-of-life care issues be provided. The inclusion of end-of-life care content in
critical care curricula and professional development activities is needed to address
the complexity of this area of practice, including the care and inclusion of family, the
physical care and emotional support of the patient and self-care for the nurse. A suite
of resources, similar to those developed for the Palliative Care Curriculum for
Undergraduates (PCC4U) project, that includes case studies and experiential learning
activities could support integration of end-of-life content in critical care curricula
(PCC4U, 2011).
Inclusion of in-services within the workplace and the opportunity for attendance at
workshops specifically designed to address the challenges and opportunities for the
provision of end-of-life care in critical care settings is needed. For example, the
findings of the current study indicated the centrality of the family to the provision of
end-of-life care, yet items related to emotional support of the patient and family were
practices least frequently identified as always undertaken by critical care nurses. In
addition, opportunities for knowledge acquisition and preparedness were associated
with critical care nurses’ engagement in interpersonal caring practices. Thus,
strategies to support nurses to gain experience in the provision of end-of-life care
may enhance nurses’ preparation and knowledge for practice and increase their
engagement in interpersonal care practices. For example, emotional support practices
may be enhanced through experiential learning strategies, such as facilitated practice
development workshops in which critical care nurses have an opportunity to practice
communication skills and role play difficult conversations that could be considered
socially awkward in other contexts. Practising these interventions in a supportive
environment may increase critical care nurses’ confidence and future engagement in
emotional support practices.
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Specialist palliative care nurses could also be invited into critical care settings to
share their knowledge and experiences, which may be translated into critical care
practice. Critical care nurses could also participate in supernumerary clinical
experiences in palliative care or hospice settings to increase their experience with
death and dying. For example, the Program of Experience in the Palliative Approach
(PEPA) provides opportunities for nurses to attend workshops and gain professional
experience in a palliative approach through supervised clinical placement
experiences in palliative care settings (PEPA, 2003). Experiences gained in palliative
care settings may be translated into practice in the critical care context. Inclusion of
end-of-life content in both formal education and professional development may raise
awareness of the value and importance of this area of practice and contribute to
nurses’ practice knowledge and perception of their personal preparedness.
In addition, critical care nurses should be encouraged to share their personal
experiences of providing end-of-life care to raise awareness of this area of practice
and the value and contribution that can be made to patients at the end of life and their
families within their own workplace. Opportunities for critical care nurses to share
their experiences of end-of-life care with the broader community should also be
sought. These personal narratives of critical care nurses may facilitate wider
acceptance and meaning of death and dying in critical care settings and wider society
(Byock, 2002; Hart et al., 1998).
11.4 Recommendations for research
The palliative values expressed by critical care nurses in this study are applicable in
the management of all critically ill patients and not just those patients identified as at
the end of life. Further research to ascertain the attitudes of critical care nurses and
investigate the potential for earlier integration of a palliative approach in the
management of critically ill patients would make an important contribution to
improving knowledge of this area of nursing practice in critical care settings. Earlier
inclusion of a palliative approach could enhance care for patients experiencing
209
critical illness and smooth transitions when a decision to withhold or withdraw life-
sustaining treatment is made (NHMRC, 2011; Stroud, 2002).
Evaluative studies of values-based education should be undertaken to obtain
evidence of the effectiveness of this educational approach in supporting the
development of positive values towards end-of-life care among critical care nurses
and improving the quality of care experienced by patients at the end of life and their
families. In addition, content mapping of end-of-life care in critical care curricula in
higher education institutions can assist in appropriately targeting the development of
resources needed to integrate end-of-life content in curricula. In addition, further
research to explore critical care nurses’ perception of their preparedness for the
provision of end-of-life care and the factors that contribute to this preparedness is
needed. This research may inform the development of strategies to prepare nurses for
the provision of end-of-life care in critical care and other settings.
Although the findings of this study suggest nurse-led care, critical care nurses
practice within a broader multidisciplinary team. Further research to identify the role
and contribution of other members of the multidisciplinary team from the perspective
of each of the different professions is needed to obtain a more complete picture of
this area of practice in critical care settings. In addition, the perspective of patients
and families is important, and further research should consider the patient and family
perception of what constitutes good death. The experience of end-of-life care from
the family’s perspective could provide new insight and identify areas for practice
development.
Engagement in practices related to the emotional support of the patient and family
and symptom management were also found to vary across the different critical care
workplaces. Critical care is a broad term encompassing diverse settings of nursing
practice. Further in-depth research in specific areas of critical care, such as intensive
care and emergency departments, may contribute to nursing knowledge of end-of-life
care in the different critical care workplaces in which end-of-life care is provided.
For example, research into the emotional support practices utilised by emergency
nurses in the provision of end-of-life care in emergency departments would enhance
knowledge of this area of practice. In addition, the experience of end-of-life care in
210
emergency departments for bereaved families would assist in identifying areas for
practice improvement.
In addition, further research to explore the finding that males differ in their
engagement in interpersonal caring practices is needed. The perspective of recipients
of this care, such as bereaved family members could be assessed to investigate
whether emotional and spiritual support needs are adequately addressed. In addition,
the emotional support needs of male critical care nurses and strategies required to
address these needs may be different from those of female critical care nurses.
The survey instrument was specifically developed to address the research questions
posed in the current study. Preliminary evidence of the reliability and validity of the
survey instrument has been obtained. Further development and testing of the survey
instrument is required. Specifically, the symptom management scale requires further
development. Although the internal consistency of the items in the symptom
management scale was deemed satisfactory in pilot testing, varied feedback on this
scale was obtained from the expert panel and multivariable analysis revealed low
variation explained by predictors in the regression model. Perhaps this is a difficult
area to assess using a self-report survey instrument. Other methods of research such
as chart audit or completion of a checklist style instrument immediately post
provision of end-of-life care may eliminate recall biases and provide more insight
into the symptom management practices of critical care nurses. In addition, further
testing of the entire survey instrument using CFA or a structural equation modelling
approach in a new sample would provide more evidence of the reliability and validity
of this new tool.
11.5 Conclusions
This study has contributed new insights into critical care nurses’ engagement in end-
of-life care practices. Importantly, this study has also contributed new knowledge of
the factors associated with critical nurse engagement in these practices. Critical care
nurses engage in many important practices in the provision of end-of-life care.
211
However, variation was noted in critical care nurses’ engagement in some practice
areas and key factors associated with this variation were identified.
First, critical care nurses’ responses to the survey reflected values consistent with a
palliative approach. These palliative values were associated with engagement in all
end-of-life care practice areas identified in this study. Thus, the personal values of
the critical care nurse were at the core of their practice intentions. Development of
positive attitudes and values among nurses towards end-of-life care in critical care
settings can thus contribute to quality care for patients at the end of life and their
families.
Consistent with recommendations in the literature (Seymour, 2001; Truog et al.,
2008), the responses of participants in this study indicate agreement with and support
for patient and family centred care. In addition, higher agreement on items regarding
patient and family preferences was associated with critical care nurse engagement in
practices that share control with and support inclusion of families. Strategies that
assist critical care nurses to identify and support patient and family preferences will
contribute to increased participation in the end-of-life care practice areas identified in
this study.
Despite limited opportunities for knowledge acquisition, critical care nurses felt
adequately prepared for the provision of end-of-life care. These factors were
associated with variation in critical care nurses’ engagement in interpersonal caring
practices such as those pertaining to patient and family centred decision making and
emotional support for patients and families. In addition, critical care nurses reporting
higher scores on the emotional support for nurses’ scale, measuring agreement with
the support and assistance they receive, and/or higher scores on the DAS were
associated with lower levels of reported engagement in patient and family centred
decision making practices. Collectively, these findings indicate that critical care
nurses who have limited opportunities for knowledge acquisition, who perceive that
they are not prepared, and/or who are less comfortable with the provision of end-of-
life care and death report lower engagement in end-of-life care practices that reflect
interpersonal care.
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In addition, it is argued that the practices most frequently identified as always
undertaken in the provision of end-of-life care, specifically, information sharing and
environmental modification practices, require less emotional engagement by the
nurse and are less confronting than other interpersonal caring practices, such as the
emotional support practices least frequently identified as always undertaken.
Participation in professional development opportunities incorporating experiential
learning strategies and a values-based approach as well as supported clinical
experiences in the provision of end-of-life care can equip nurses with the knowledge,
skills and ability to engage in interpersonal caring practices.
An end-of-life care practice context of nurse-led care with variation in availability of
resources was identified. Contextual factors had a limited influence as explanatory
variables and were only associated with environmental modification practices. These
findings suggest that the broader practice context and culture of critical care are less
significant in the intimate settings of end-of-life care, where interpersonal care by the
critical care nurse comprises a large portion of practice. Further research that
considers the perspectives of families and other members of the multidisciplinary
team would make a valuable contribution to knowledge of end-of-life care in critical
care settings.
The findings of this study informed a number of recommendations for practice and
education and further research. The provision of end-of-life care in critical care
settings represents a significant component of nursing work that is highly valued by
nurses engaged in this work. Critical care nurses must be adequately prepared and
supported to provide comprehensive care in all areas of end-of-life care practice to
optimise care for patients at the end of life and their families, and to maintain their
own health and wellbeing in this often emotionally demanding role.
213
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Information for Prospective Participants The following research activity has been reviewed via QUT arrangements for the conduct of research involving human participation and the ACT Health Human Research Ethics Committee. If you choose
to participate, you will be provided with more detailed participant information, including who you can contact if you have any concerns.
End-of-life care in the intensive care setting: Australian nurses’ practice behaviours and factors influencing these practice behaviours.
Research Team Contacts Kristen Ranse, PhD student Professor Patsy Yates, Principal supervisor
Please contact the researcher team members to have any questions answered or if you require further information about the project
What is the purpose of the research? The purpose of this research is to identify and describe Intensive Care Nurses’ experiences and practices in relation to providing end-of-life care to patients and their families in the intensive care setting.
Are you looking for people like me? The research team is looking for Registered Nurses currently employed in a clinical position within the Intensive Care Unit who have provided care to a dying patient and their family in the Intensive Care Unit.
What will you ask me to do? Your participation will involve an interview of approximately 1 hour in length to discuss your experiences and practices in the provision of end-of-life care.
Are there any risks for me in taking part? The research team does not believe there are any risks for you if you choose to participate in this research.
It should be noted that if you do agree to participate, you can withdraw from participation at any time during the project without comment or penalty.
Are there any benefits for me in taking part? It is expected that this project will not benefit you directly. However, the findings of this project will contribute to nursing knowledge of current end-of-life care practice and the future evaluation of end-of-life care practice in intensive care settings. Recommendations for practice development to prepare and support intensive care nurses in the provision of end-of-life care will be made.
Will I be compensated for my time? This research has been endorsed by the Clinical Nurse Consultant (ICU) and Acting Director of Nursing (Surgical Services) and approval has been granted for participants to attend the interview during work time.
I am interested—what should I do next? If you would like to participate in this study, please contact the research team for details of the next step.
You will be provided with further information to ensure that your decision and consent to participate is fully informed.
Thank You!
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13.6 Phase one information sheet and consent form
PARTICIPANT INFORMATION for QUT RESEARCH PROJECT
End-of-life care in the intensive care setting: Australian nurses’ practice behaviours
and factors influencing these practice behaviours.
Research Team Contacts Kristen Ranse, PhD student Prof. Patsy Yates, Principal supervisor
Description This project is being undertaken as part of a PhD program of research by Kristen Ranse. The purpose of this project is to identify and describe Intensive Care Nurses’ experiences and practices in relation to providing end-of-life care to patients and their families in the intensive care setting. The findings of this research will inform future research and practice development to prepare and support nurses in the provision of end-of-life care. Participation Your participation in this project is voluntary. If you do agree to participate, you can withdraw from participation at any time during the project without comment or penalty. Your decision to participate will in no way impact upon your current or future relationship with ACT Health or QUT. Your participation will involve an individual interview of approximately 1 hour in length at The Canberra Hospital. During this interview, you will be encouraged to discuss your experiences and practices in relation to the provision of end-of-life care. A digital voice recorder will be used to record each interview to enable a transcription of the discussion to be produced and permit the researcher to return to the discussion at a later time. Expected benefits It is expected that this project will not benefit you directly. However, the knowledge gained from this project will contribute to nursing knowledge of current end-of-life care practice in the intensive care setting and the future evaluation of end-of-life care for patients and their families. Risks The risks associated with your participation in this project are minimal. Reflection on experience is encouraged in professional practice; however, reflection can sometimes result in vulnerability and distress. You may withdraw your participation at any time during the project. Employees of ACT Health, and their family members, can access an employee assistance program to discuss matters relating to employment, such as stress. IPS Worldwide is the provider of the ACT Health Employee Assistance Program and can be contacted on 1300 366 789 or at www.eap.com.au Confidentiality All comments and responses are anonymous and will be treated confidentially. The names of individual persons are not required in any of the responses. Access to the digital audio recording and interview transcription will be restricted to the principal researcher and supervisory team. Consent to Participate We would like to ask you to sign a written consent form to confirm your agreement to participate. Questions / further information about the project
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Please contact the researcher team members named above to have any questions answered or if you require further information about the project. Concerns / complaints regarding the conduct of the project ACT Health and QUT are committed to researcher integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the project you may contact the ACT Health Human Research Ethics Committee: Secretariat, ACT Health Human Research Ethics Committee, Executive Coordination, Level 3, 11 Moore Street, Canberra City, ACT 2061 or phone (02) 6205 0846. Alternatively, you may contact the QUT Research Ethics Officer on (07) 3138 2340 or [email protected]. The Research Ethics Officer is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.
CONSENT FORM for QUT RESEARCH PROJECT
End-of-life care in the intensive care setting: Australian nurses’ practice behaviours
and factors influencing these practice behaviours.
Statement of consent By signing below, you are indicating that you:
• have read and understood the information document regarding this project
• have had any questions answered to your satisfaction
• understand that if you have any additional questions you can contact the research team
• understand that you are free to withdraw at any time, without comment or penalty
• understand that you can contact the ACT Health Human Research Ethics Committee on (02) 6205 0846 or the Research Ethics Officer at Queensland University of Technology (QUT) on (07) 3138 2340 or [email protected] if you have concerns about the ethical conduct of the project .
• agree to participate in the project
• understand that the project will include audio recording
13.7 Email invitation to experts to participate in the survey review panel
Dear [NAME],
My name is Kristen Ranse and I am undertaking a research project on intensive care nurses’ end-of-life care practices and the factors influencing these practices as part of a PhD program of research at Queensland University of Technology. My supervisors are Prof Patsy Yates and Dr Fiona Coyer.
This research project involves a three-phase exploratory sequential mixed method design. Phase one used a qualitative approach to interview five intensive care nurses about their experiences and practices of end-of-life care. Phase two involves the development of a survey instrument, based on a review of the literature and the findings of phase one. The instrument will then be used in phase three to conduct a national survey of Australian intensive care nurse end-of-life care practices and factors that may influence these practices.
I am writing to you to invite you to participate as a content expert reviewer of the survey instrument. As a reviewer of the instrument, you will be asked to rate the relevance of each item on the instrument. You will also be asked to comment on the readability of the survey instrument, the survey content in regard to coverage of the variables of interest and suggest the addition, deletion and revision of individual items.
To assist you in reviewing the instrument, please find attached an information sheet outlining the research project including the research questions, definitions of key terms and an overview of each section of the survey instrument.
If you would like to participate as a content reviewer, please click [S] or copy and paste the URL below to complete the review online:
[URL]
I would appreciate your feedback on the instrument by Friday 4 December 2009. If you are unable to participate on this occasion, please advise me by e-mail ([email protected]). Please do not hesitate to contact me by e-mail or phone (0431 690 114) if you have any queries.
Your support for this project is valued.
Kind regards
Kristen Ranse
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13.8 Information sheet for expert panel
INFORMATION SHEET for QUT RESEARCH
PROJECT
End-of-life care in the intensive care setting: Australian nurses’ practices and factors
affecting these practices.
Research Team Contacts
Kristen Ranse, PhD student Professor Patsy Yates, Principal supervisor
Project Description Although end-of-life care is a significant component of nursing work in the intensive care setting, few studies have examined nursing practice in relation to care of the dying patient and their family in this setting. Inadequate preparation and support of nurses providing end-of-life care, in addition to the stress associated with the provision of end-of-life care, may contribute to burnout and poor retention of intensive care nurses. To prepare and support nurses in the provision of optimal end-of-life care and to evaluate and improve the care that dying patients and their families receive, it is imperative that the current end-of-life care practices of intensive care nurses are identified and described. In addition, identification of factors influencing the end-of-life care practices of intensive care nurses can inform further research and development. This research project involves a three-phase exploratory sequential mixed method design. Phase one used a qualitative approach to interview five intensive care nurses to describe their experiences and practices of end-of-life care. Phase two involves the development of a survey instrument, based on a review of the literature and the findings of phase one. This phase also includes a review of the survey instrument by a panel of experts and a pilot test of the survey instrument to determine the validity and reliability of the instrument. The refined instrument will then be used in phase three to conduct a national survey of intensive care nurse end-of-life care practices and factors that may influence these practices. Research Questions The research questions of interest in this research project are:
1. What are the most frequently reported end-of-life care practices of Australian intensive care nurses?
2. Which factors predict intensive care nurse end-of-life care practices? a. What are the select content and facilitation factors influencing end-of-life care as
perceived by Australian intensive care nurses? b. What is the relationship between nurse characteristics and select context and
facilitation factors influencing end-of-life care? c. What is the relationship between select context and facilitation factors influencing
end-of-life care and end-of-life practices of intensive care nurses?
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Variables Practices: the actions (and inactions) undertaken by intensive care nurses in the provision of end-of-life care of a patient and their family, where end-of-life care is defined as the care undertaken after a decision is made to withhold or withdraw treatment, with death of the patient the expected outcome. Practices will be measured on the survey instrument using a 5-point rating scale where 1 = never, 2 = rarely, 3 = sometimes, 4 = often and 5 = always. Context: all aspects of the setting where practice takes place (McCormack et al. 2002). Empirically derived contextual factors considered relevant to this research project include culture, physical environment, staffing and the availability of resources. Contextual factors will be measured on the survey instrument using a 5-point Likert scale where 1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree and 5 = strongly agree. Facilitation: the process of making things easier. Facilitative factors include the attitudes and beliefs of the nurse and communication issues and the fragmentation of care delivery. Facilitation factors will be measured on the survey instrument using a 5-point Likert scale where 1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree and 5 = strongly agree. Survey description The survey consists of three sections: demographic information, end-of-life care practices and factors influencing end-of-life care practices. The instructions to be provided to participants are in bold type under each section heading. Instructions specific to you as a member of the expert panel are indicated after the text EXPERT PANEL within the survey instrument. Section two of the instrument requires respondents to rate how often they undertake select practices when caring for a patient at the end-of-life. This section of the survey instrument aims to address the research question ‘What are the end-of-life care practices of Australian intensive care nurses?’. The items in section two (end-of-life care practices) on the survey instrument will be measured using a 5-point rating scale where 1 = never, 2 = rarely, 3 = sometimes, 4 = often and 5 = always. This rating scale will provide evidence of the frequency that specified practices are undertaken in the provision of end-of-life care by respondents to the survey. Section three of the survey instrument aims to address the research question: What factors predict Australian intensive care nurses’ end-of-life care practices?. Section three of the survey instrument includes a modified version of Kain et al.’s (2009) Neonatal Palliative Care Attitude Scale (NiPCAS) and additional items related to beliefs about end-of-life care and organisational and emotional support for clinicians that were emerged from the findings of phase one and the literature review of this research project. The items in section three (factors influencing end-of-life care) on the survey instrument will be measured using a 5-point Likert scale where 1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree and 5 = strongly agree. References Kain, V., Gardner, G. & Yates, P. (2009). Neonatal Palliative Care Attitude Scale: Development of an instrument to measure the barriers to and facilitators of palliative care in neonatal nursing. Pediatrics, 123, e207–e213. McCormack, B., Kitson, A., Harvey, G., Rycroft-Malone, J., Titchen, A. & Seers, K. (2002). Getting evidence into practice: The meaning of ‘context’. Journal of Advanced Nursing, 38(1), 94–104.
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13.9 Phase two pilot test email invitation, email reminder and email retest
invitation
Email invitation—Pilot test
Hi,
My name is Kristen Ranse and I’m undertaking a research project on end-of-life care in intensive care settings as part of a PhD program of research at Queensland University of Technology. An information sheet regarding this study is attached to this e-mail.
I am writing to you to invite you to participate in a pilot study by completing an online survey. In two to four weeks time, you will again be requested to complete the same survey. This will enable the survey instrument to be tested for reliability prior to the survey being distributed to a national sample.
If you would like to participate, please click [S] or copy and paste the URL below to complete the review online:
[URL]
Your participation in this research will contribute to the development of a survey that will be distributed to a national sample of critical care nurses. The knowledge gained from this PhD research project may inform the development of strategies to assist in the care of the dying patient and their family in critical care units and support nurses in the provision of this care.
Many thanks for your consideration in this request.
Kristen
Reminder invitation
Hi,
I recently sent you an invitation to participate in a research project on end-of-life care in critical care settings by completing an online survey. An information sheet regarding this study is attached to this e-mail.
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If you would like to participate, please click [S] or copy and paste the URL below to complete the review online:
[URL]
Your participation in this research will contribute to the development of a survey that will be distributed to a national sample of critical care nurses. The knowledge gained from this PhD research project may inform the development of strategies to assist in the care of the dying patient and their family in critical care units and support nurses in the provision of this care.
Many thanks for your consideration in this request.
Kristen Ranse PhD Candidate Queensland University of Technology
Re-test email invitation
Hi,
Thankyou for participating in the pilot study for the research project on end-of-life care in intensive care settings by completing the online survey. I am writing to you to invite you to complete the survey again, to enable the survey instrument to be tested for reliability prior to the survey being distributed to a national sample. If you would like to participate, please click [S] or copy and paste the URL below and follow the instructions to complete the survey: [URL]
Your participation in this research will contribute to the development of a survey that will be distributed to a national sample of critical care nurses. The knowledge gained from this PhD research project may inform the development of strategies to assist in the care of the dying patient and their family in critical care units and support nurses in the provision of this care.
Many thanks for your consideration in this request.
Kristen
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13.10 Phase three email invitation and email reminder
Email invitation
Subject: End-of-life care in critical care settings: A National survey
Dear ACCCN member,
My name is Kristen Ranse and I’m undertaking a research project on end-of-life care in critical care settings as part of a PhD program of research at Queensland University of Technology. I am writing to you to invite you to participate in this study by completing an online survey. An information sheet regarding this study is attached to this e-mail.
If you would like to participate, please click on the link below and follow the instructions to complete the survey:
[URL]
Your participation in this research will contribute to nursing knowledge of end-of-life care in critical care settings and the development of strategies to assist in the care of the dying patient and their family.
Many thanks for your consideration in this request.
Kristen
Email reminder
Subject: End-of-life care survey reminder
Dear ACCCN member,
My name is Kristen Ranse and I’m undertaking a research project on end-of-life care in critical care settings as part of a PhD program of research at Queensland University of Technology. I recently sent you an invitation to participate in this study by completing an online survey. An information sheet regarding this study is attached to this e-mail.
Thank you if you have already taken the time to participate in this survey. If you have not yet participated and would like to participate, please click on the link below
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and follow the instructions to complete the survey by 5pm EST Wednesday 8 June :
[URL]
Your participation in this research will contribute to nursing knowledge of end-of-life care in critical care settings and the development of strategies to assist in the care of the dying patient and their family.
Many thanks for your consideration in this request.
Kristen Ranse
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13.11 Information sheet attached to email invitation to participate (phase two
pilot test and phase three)
PARTICIPANT INFORMATION for QUT RESEARCH
PROJECT
End-of-life care in the intensive care setting: Australian nurses’
practices and factors affecting these practices.
Research Team Contacts
Kristen Ranse, PhD student Professor Patsy Yates, Principal supervisor
Description This project is being undertaken as part of a PhD program of research by Kristen Ranse. The purpose of this project is to identify the end-of-life care practices of Australian Intensive Care Nurses and the factors that might influence these practices. The findings of this research will inform future research and practice development to prepare and support nurses in the provision of end-of-life care. The project is funded by an ACT Nursing & Midwifery Board Research Grant. The ACT Nursing & Midwifery Board will not have access to the data obtained during the project. Participation Your participation in this project is voluntary. If you do agree to participate, you can withdraw from participation at any time during the project without comment or penalty. Your decision to participate will in no way impact upon your current or future relationship with QUT (for example your grades) or with the Australian College of Critical Care Nurses (ACCCN). As this project involves the submission of an anonymous survey, it will not be possible to withdraw from the project once submitted. Your participation will involve completion of an online survey. It is anticipated that completion of the survey will take approximately 20 minutes. Surveys will maintain participant anonymity by not requesting your name or contact details. The content of the survey will include demographic information, nurses end-of-life care practices and factors influencing nursing end-of-life care practice. Expected benefits It is expected that this project will not benefit you directly. However, this research will contribute to nursing knowledge of end-of-life care in the intensive care setting and inform the development of strategies to support nurses in the provision of end-of-life care. This research may inform future research to evaluate and improve the care that dying patients and their families receive. Risks The risks associated with your participation in this project are minimal. Reflection on experience is encouraged in professional practice, however, reflection can sometimes result in vulnerability or discomfort. If you do encounter any discomfort whilst completing the survey you can of course stop completing the survey and you may wish to consider accessing counselling services. QUT provides for limited free counselling for research participants of QUT projects, who may
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experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please contact the Clinic Receptionist of the QUT Psychology Clinic on +61 7 3138 0999. Please indicate to the receptionist that you are a research participant. Confidentiality All comments and responses will be treated confidentially. The names of individual persons are not required in any of the responses. Consent to Participate The submission an online survey is accepted as an indication of your consent to participate in this project. Questions / further information about the project Please contact the researcher team members named above to have any questions answered or if you require further information about the project. Concerns / complaints regarding the conduct of the project QUT is committed to researcher integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the project you may contact the QUT Research Ethics Coordinator on +61 7 3138 2091 or [email protected]. The Research Ethics Coordinator is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.
Silence alarms on all equipment 0 0.5 5.6 26.5 67.3 4.6 (0.6)
Adjust (dim or turn off) the lighting around the patient’s bed space 0.5 3.1 12.2 49.7 34.4 4.2 (0.8)
Play music 6.1 13.0 46.7 28.1 6.1 3.2 (0.9)
Put up photographs of the patient, family members and/or pets 2.6 4.6 26.0 49.0 17.9 3.8 (0.9)
Cluster/coordinate care to minimise interruptions and provide privacy for the patient and family 0.3 1.5 3.8 45.4 49.0 4.4 (0.7)
Draw curtains to provide privacy for the patient and family 0 0.5 4.1 26.3 69.1 4.6 (0.6)
Place chairs around the bed for the family 0 0.5 1.3 23.2 75.0 4.7 (0.5)
Administer fluids to the patient to maintain hydration 2.8 8.2 30.6 38.3 20.2 3.7 (1.0)
Keep the patient sedated, if appropriate 0 0.5 9.2 43.1 47.2 4.4 (0.7)
Administer analgesia via intravenous infusion 0 0.8 6.1 46.7 46.4 4.4 (0.6)
Provide care to maintain patient hygiene 0 0.3 2.8 21.2 75.8 4.7 (0.5)
Provide pressure area care 0.3 1.3 6.4 32.1 59.9 4.5 (0.7)
Maintain the patient’s airway using oro/endotracheal suction 1.5 2.8 16.6 40.1 39.0 4.1 (0.9)
Remove the endotracheal tube if the patient is breathing spontaneously 1.8 1.5 19.6 44.9 32.1 4.0 (0.9)
Initiate (or implement) weaning from mechanical ventilation once the decision to withdraw
mechanical ventilation has been made (i.e. reduce FiO2, rate and/or tidal volume) 5.1 8.2 26.5 38.3 21.9 3.6 (1.1)
Administer medications to prevent/minimise dyspnoea and respiratory sections 1.3 2.6 16.6 44.4 35.2 4.1 (0.9)
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Item Never Rarely Sometimes Often Always M (SD)
Regularly obtain and document patient vital signs during the provision of EOLC 3.1 13.3 28.3 31.4 24.0 3.6 (1.1)
Ask the family about spiritual needs 0.5 2.8 9.4 29.3 57.9 4.4 (0.8)
Offer to arrange for a spiritual advisor or pastoral care representative to visit the patient and family 0.8 1.0 7.1 31.1 59.9 4.5 (0.7)
Ask the family about cultural needs 0.8 4.3 16.3 29.3 49.2 4.2 (0.9)
Support the family to participate in cultural practices related to dying 0.8 3.3 13.5 32.9 49.5 4.3 (0.9)
Note. M = mean; SD = standard deviation; EOLC = end-of-life care.
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13.14 Participant responses as a percentage of the sample, means and standard deviations for each item in the Factors influencing the
provision of end-of-life care section of the survey instrument (n = 392)
Item SD D N A SA M (SD)
The medical staff support EOLC for dying patients in my unit 0.8 8.7 9.2 54.1 27.3 4.0 (0.9)
In my Unit, the team expresses its opinions, values and beliefs about providing care to dying patients 1.3 8.7 10.2 58.2 21.7 3.9 (0.9)
All members of the healthcare team in my Unit agree with and support EOLC when it is implemented 1.3 10.5 12.2 53.8 22.2 3.9 (0.9)
After a decision is made to withdraw life-sustaining treatment, less time is spent with the patient by the critical care medical team 7.4 25.0 12.0 42.1 13.5 3.3 (1.2)
After a decision is made to withdraw life-sustaining treatment, nurses are left to manage the care of the patient 6.4 27.6 9.9 40.3 15.8 3.3 (1.2)
In my Unit, EOLC is mostly allocated to junior nurses 36.2 48.5 10.7 2.8 1.8 1.9 (0.9)
In my Unit, nurses view the provision of EOLC as an important component of critical care nursing 1.5 5.1 12.8 44.1 36.5 4.1 (0.9)
The physical environment of my Unit is ideal for providing EOLC 16.8 43.4 20.4 16.6 2.8 2.5 (1.0)
Private rooms are available to care for the patient at the EOL 8.2 19.9 14.8 44.6 12.5 3.3 (1.2)
My Unit is adequately equipped (chairs/recliners/waiting room etc.) to support the comfort needs of the family during EOLC 14.5 33.2 14.8 28.6 8.9 2.8 (1.2)
My Unit is adequately staffed for providing the needs of dying patients and their families 5.4 24.5 19.1 42.6 8.4 3.2 (1.1)
When a patient dies in my Unit, nurses have sufficient time to spend with the family 3.8 21.4 14.0 50.5 10.2 3.4 (1.1)
There are policies/guidelines to assist in the delivery of EOLC in my Unit 6.4 28.6 22.2 34.2 8.7 3.1 (1.1)
Lack of staff results in no ‘down time’ between the death of a patient and the admission of the next patient 3.8 24.5 23.2 34.9 13.5 3.3 (1.1)
When a patient dies in my Unit, families have sufficient time to spend with the patient 0.8 5.1 12.0 61.5 20.7 4.0 (0.8)
In my Unit, families are involved in decisions about the dying patient 1.3 1.8 6.6 59.4 30.9 4.2 (0.7)
In my Unit, when a diagnosis with a likely poor outcome is made, families are informed of EOLC options 1.3 8.7 10.7 54.1 25.3 3.9 (0.9)
In my Unit, withdrawal of treatment is delayed whilst waiting for relatives of the patient to arrive 0.8 2.6 5.6 61.2 29.8 4.2 (0.7)
In my Unit, the patient’s preferences (or their likely preference according to family) for EOLC are considered 1.3 2.6 10.2 57.4 28.6 4.1 (0.8)
In my Unit, families are given adequate time to consider decisions to withhold/withdraw treatment for the patient (their relative) 0.5 2.6 11.5 60.5 25.0 4.1 (0.7)
In my Unit, family meetings with the health care team are held to resolve differing views about a patient’s treatment 1.0 3.6 7.9 56.9 30.6 4.1 (0.8)
I have received in-service education that assists me to support and communicate with families of dying patients 13.0 40.8 12.0 28.1 6.1 2.7 (1.2)
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Item SD D N A SA M (SD)
I have received in-service education that assists me to provide care and manage patient symptoms at the EOL (n = 390) 12.6 42.1 13.6 25.6 6.2 2.7 (1.2)
My undergraduate nursing education included EOLC content (n = 390) 9.0 27.2 22.1 36.2 5.6 3.0 (1.1)
My postgraduate nursing education included EOLC content relevant to the critical care context (n = 390) 8.5 25.1 22.3 33.6 10.5 3.1 (1.2)
I draw on evidence from the literature to provide EOLC to patients and their families 2.3 17.1 20.7 48.2 11.7 3.5 (1.0)
I feel adequately prepared to care for patients at the EOL (n = 389) 0.5 6.9 13.6 49.1 29.8 4.0 (0.9)
I don’t know what to say to the family of a patient at the EOL (n = 391) 26.8 45.8 15.1 9.2 3.1 2.2 (1.0)
I have limited knowledge of symptom management for patient’s at the EOL (n = 391) 28.9 51.7 8.2 9.0 2.3 2.0 (1.0)
I am often exposed to death in the critical care environment 2.3 9.2 14.3 44.9 29.3 3.9 (1.0)
I have learnt from other nurses how to provide EOLC 2.3 6.6 10.7 63.5 16.8 3.9 (0.9)
Analgesia should be titrated to keep the patient comfortable even if this hastens death (n = 391) 0 0.5 2.6 36.1 60.9 4.6 (0.6)
Pressure area care should continue to be provided for a patient at the EOL (n = 391) 0 1.8 7.9 39.1 51.2 4.4 (0.7)
EOLC should include care of the patient’s family (n = 391) 0 0 0.5 24.6 74.9 4.7 (0.5)
Abrupt withdrawal of mechanical ventilation may contribute to dyspnoea (n = 387) 0.5 4.9 16.5 50.9 27.1 4.0 (0.8)
When withdrawing mechanical ventilation at the end-of-life, ventilator weaning (such as reductions in FiO2 and PEEP) should occur
prior to extubating the patient or placing a patient on a T-piece (n = 391) 5.1 22.0 29.2 31.7 12.0 3.2 (1.1)
Intravenous fluids should be provided to maintain hydration for the patient at the EOL (n = 390) 6.2 15.9 30.3 36.7 11.0 3.3 (1.1)
The provision of EOLC requires emotional detachment 23.0 51.5 11.5 10.2 3.8 2.2 (1.0)
It is OK to cry when a patient dies (n = 390) 1.3 1.5 10.0 52.3 34.9 4.2 (0.8)
When a patient dies in my Unit, counselling is available if I need it (n = 390) 4.9 12.8 14.6 56.2 11.5 3.6 (1.0)
In my Unit, nurses are expected to cope with death and dying (n = 391) 0.8 14.8 12.5 59.6 12.3 3.7 (0.9)
I feel supported when caring for a patient at the EOL (n = 390) 2.1 8.7 21.3 54.9 13.1 3.7 (0.9)
After caring for a patient at the EOL, my colleagues will ask me if I am OK (n = 391) 1.3 6.1 11.5 59.1 22.0 3.9 (0.8)
My supervisors/managers ensure staff caring for patients at the EOL are supported (n = 390) 3.6 16.9 23.3 45.6 10.5 3.4 (1.0)
My colleagues appreciate the stressors associated with caring for patients at the EOL (n = 391) 0.8 4.3 12.5 64.7 17.6 3.9 (0.7)
My supervisors/managers provide guidance that assists me to provide EOLC (n = 390) 5.9 21.8 28.7 37.9 5.6 3.2 (1.0)
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Item SD D N A SA M (SD)
I feel a sense of personal failure when a patient dies (n = 391) 46.0 44.8 5.9 2.0 1.3 1.7 (0.8)
It is a privilege to care for a patient at the EOL and their family 0.8 1.0 7.1 33.9 57.1 4.5 (0.7)
I can influence the patient and family’s experience of EOLC (n = 391) 0.8 1.0 3.1 41.9 53.2 4.5 (0.7)
My own personal experiences of death have influenced the care I provide to patients at the EOL 1.0 9.4 17.3 37.2 34.9 4.0 (1.0)
EOLC is as important as curative care in the critical care environment (n = 389) 0.5 1.0 4.6 37.8 56.0 4.5 (0.7)
After a decision is made to withdraw treatment, I spend less time with the patient 37.0 43.1 8.2 10.7 1.0 2.0 (1.0)
Patients at the EOL require little nursing care (n = 388) 50.5 40.5 4.4 2.3 2.3 1.7 (0.9)
In my unit, nurses that know the patient and family are allocated to care for the patient to maintain continuity of care 2.6 25.3 27.8 37.2 7.1 3.2 (1.0)
In my unit, a plan of care for the patient is clearly documented by the medical team after a decision to withhold or withdraw treatment
is made 2.6 21.2 16.6 46.2 13.5 3.5 (1.1)
In my unit, the critical care team and the patient’s primary medical or surgical team agree on a plan of care 3.3 11.5 25.8 49.7 9.7 3.5 (0.9)
Following a decision to withhold or withdraw treatment, patients remain in my Unit for EOLC 0.8 13.8 30.9 44.9 9.7 3.5 (0.9)
I am very much afraid to die 15.1 41.6 27.6 10.5 5.4 2.5 (1.0)
The thought of death seldom enters my mind 7.1 49.2 21.9 19.9 1.8 2.6 (0.9)
It doesn’t make me nervous when people talk about death 1.5 7.9 5.9 53.8 30.9 4.1 (0.9)
I dread to think about having an operation 17.3 41.1 18.9 18.9 3.8 2.5 (1.1)
I am not at all afraid to die 5.6 31.1 33.2 23.5 6.6 2.9 (1.0)
I am not particularly afraid of getting cancer 12.2 46.7 20.9 18.1 2.0 2.5 (1.0)
The thought of death never bothers me 7.1 49.7 23.7 16.8 2.6 2.6 (0.9)
I am often distressed by the way that time flies so very rapidly 5.9 31.4 33.2 23.7 5.9 2.9 (1.0)
I fear dying a painful death 1.5 18.4 18.9 43.4 17.9 3.6 (1.0)
The subject of life after death troubles me greatly 29.4 44.9 23.0 1.8 0.8 2.0 (0.8)
I am really scared of having a heart attack 13.0 46.7 26.5 12.5 1.3 2.4 (0.9)
I often think about how short life really is 5.1 21.2 21.9 42.1 9.7 3.3 (1.1)
268
Item SD D N A SA M (SD)
I shudder when I hear people talking about world war III 21.7 38.8 25.5 11.2 2.8 2.4 (1.0)
The sight of a dead body is horrifying to me 52.6 42.3 4.1 0.3 0.8 1.5 (0.7)
I feel that the future holds nothing for me to fear 7.1 33.7 37.5 17.1 4.6 2.8 (1.0)
Note. SD = strongly disagree; D = disagree; N = neutral; A = agree; SA = strongly agree; M = mean; SD = standard deviation; EOL = end of life; EOLC = end-of-life care.
269
13.15 Structure matrix for exploratory factor analysis with oblique rotation—Critical care nurses’ end-of-life care practices
Factor
1 2 3 4 5 6 7
Explain all interventions undertaken in the care of the patient .76 .22 .23 .27 .25 .38 –.27
Fully inform the family about all aspects of the plan of care .75 .22 .26 .36 .20 .49 –.21
Explain to the family what is happening to the patient .74 .18 .33 .32 .25 .35 –.14
Answer the family's questions about the patient's condition .68 .33 .19 .28 .26 .42 –.24
Introduce the nursing staff on the oncoming shift to the patient and family .65 .34 .36 .27 .22 .56 –.41
Liaise with other members of the health care team to meet identified needs of the patient and family .59 .28 .35 .39 .31 .49 –.07
Handover the family’s preferences for the patient’s end-of-life care to the oncoming nurse .59 .40 .29 .45 .16 .53 –.34
Provide information to the family about the dying process .57 .15 .32 .39 .14 .33 .02
Ask the intensive/critical care team to document the plan of care/treatment orders .48 .23 .18 .36 .20 .43 –.15
Attend family meetings with the intensive/critical care team .40 .33 .12 .22 .07 .32 –.05
Adjust (dim or turn off) the lighting around the patient’s bed space .23 .68 .28 .20 .20 .33 –.01
Silence alarms on all equipment .25 .64 .06 .15 .06 .25 –.24
Maintain the patient’s airway using oro/endotracheal suction .25 .17 .21 .18 .60 .17 –.02
Keep the patient sedated, if appropriate .32 .38 .14 .21 .55 .37 –.30
Administer fluids to the patient to maintain hydration .08 –.03 .13 .15 .55 .10 –.11
Administer analgesia via intravenous infusion .25 .42 .07 .16 .49 .35 –.32
Provide pressure area care .44 .26 .29 .01 .49 .24 –.13
Provide care to maintain patient hygiene .47 .38 .24 .00 .48 .40 –.26
Regularly obtain and document patient vital signs during the provision of EOLC .12 –.03 .25 .08 .46 .20 .03
Ask the family about spiritual needs .38 .24 .42 .30 .23 .86 –.12
Offer to arrange for a spiritual advisor or pastoral care representative to visit the patient and family .36 .24 .33 .26 .15 .84 –.14
Ask the family about cultural needs .40 .23 .42 .33 .28 .83 –.05
271
Factor
1 2 3 4 5 6 7
Support the family to participate in cultural practices related to dying .44 .28 .43 .33 .28 .83 –.06
Ask family members if there is anyone they would like to be there .49 .35 .39 .28 .21 .63 –.16
Stay in the room with the patient and family, if the patient and family wants .42 .30 .45 .26 .22 .60 –.17
Arrange for a counsellor or social worker to meet with the family .38 .28 .36 .17 .20 .44 .02
Encourage the family to touch the patient .41 .34 .39 .17 .32 .38 –.69
Encourage the family to talk to the patient .32 .29 .39 .12 .34 .31 –.60
Note. EOLC = end-of-life care.
272
13.16 Structure matrix for exploratory factor analysis with oblique rotation—Factors influencing the provision of end-of-life care
Factor
1 2 3 4 5 6 7 8
My supervisors/managers ensure staff caring for patients at the EOL are supported .83 –.01 –.15 .22 –.23 .20 .20 –.20
My supervisors/managers provide guidance that assists me to provide EOLC .77 –.08 –.19 .28 –.21 .24 .21 –.09
I feel supported when caring for a patient at the EOL .75 .08 –.20 .31 –.19 .30 .15 –.26
After caring for a patient at the EOL, my colleagues will ask me if I am OK .69 .23 –.19 .17 –.06 .24 .07 –.21
My colleagues appreciate the stressors associated with caring for patients at the EOL .65 .22 –.25 .18 –.16 .33 .02 –.30
When a patient dies in my Unit, counselling is available if I need it .55 –.14 –.03 .21 –.12 .20 .29 –.03
In my Unit, nurses view the provision of EOL care as an important component of critical care nursing .38 .23 –.19 .25 –.08 .28 .08 –.18
Lack of staff results in no ‘down time’ between the death of a patient and the admission of the next patient .34 –.13 –.18 .23 –.27 –.02 .00 –.08
EOLC is as important as curative care in the critical care environment –.01 .67 –.16 –.06 .03 –.06 .12 –.27
I can influence the patient and family’s experience of EOLC .07 .61 –.10 .01 –.05 –.04 .03 –.34
EOLC should include care of the patient’s family .01 .58 –.22 –.12 .07 .08 –.01 –.21
It is a privilege to care for a patient at the EOL and their family .14 .58 –.15 .02 –.04 –.10 .10 –.33
Analgesia should be titrated to keep the patient comfortable even if this hastens death .06 .40 –.15 –.03 .06 .00 .03 –.23
My own personal experiences of death have influenced the care I provide to patients at the EOL and their family –.05 .38 –.04 .03 .03 –.04 .10 –.14
It is OK to cry when a patient dies .08 .32 –.13 .01 –.14 –.05 .05 –.21
Pressure area care should continue to be provided for a patient at the EOL –.01 .32 –.08 –.02 .01 .07 .05 –.13
Abrupt withdrawal of mechanical ventilation may contribute to dyspnoea –.00 .28 –.22 .04 .11 –.03 .05 –.20
I am often exposed to death in the critical care environment .04 .24 –.23 .01 .17 .06 –.04 –.10
In my Unit, families are given adequate time to consider decisions to withhold /withdraw treatment for the patient .17 .06 –.74 .18 –.16 .20 .07 –.11
In my Unit, family meetings with the health care team are held to resolve differing views about a patient’s treatment .28 .03 –.73 .24 –.16 .28 .06 –.14
In my Unit, the patient’s preferences (or their likely preference according to family) for EOLC are considered .28 .07 –.61 .15 –.11 .41 .09 –.03
273
Factor
1 2 3 4 5 6 7 8
In my Unit, families are involved in decisions about the dying patient .206 .149 –.59 .239 –.155 .228 –.01 –.04
In my Unit, withdrawal of treatment is delayed whilst waiting for relatives of the patient to arrive .01 .227 –.509 .098 .045 .106 –.04 –.105
When a patient dies in my Unit, families have sufficient time to spend with the patient .37 .01 –.448 .407 –.27 .22 –.14 –.18
The physical environment of my Unit is ideal for providing EOLC .14 –.085 –.05 .72 –.118 .08 .088 –.04
My Unit is adequately equipped to support the comfort needs of the family during EOLC .13 –.00 –.189 .71 –.10 .16 .16 –.058
My Unit is adequately staffed for providing the needs of dying patients and their families .377 –.12 –.325 .68 –.185 .189 .049 –.17
Private rooms are available to care for the patient at the EOL .18 .07 –.097 .675 .026 .14 .08 –.018
When a patient dies in my Unit, nurses have sufficient time to spend with the family .46 –.079 –.409 .52 –.28 .20 –.11 –.396
In my Unit, nurses that know the patient and family are allocated to care for the patient to maintain continuity… .358 .00 –.16 .40 –.26 .257 .198 –.00
Following a decision to withhold or withdraw treatment, patients remain in my Unit for EOLC .21 .21 –.20 .318 –.126 .18 .04 –.13
After a decision is made to withdraw treatment, less time is spent with the patient by the critical care medical team –.22 .06 .12 –.189 .757 –.16 –.157 .04
After a decision is made to withdraw treatment, nurses are left to manage the care of the patient –.238 .026 .18 –.149 .727 –.18 –.088 .04
In my Unit, EOLC is mostly allocated to junior nurses –.22 –.13 .13 –.129 .35 –.18 .029 .22
After a decision is made to withdraw treatment, I spend less time with the patient .01 –.299 .20 .00 .33 .146 –.31 .27
In my Unit, nurses are expected to cope with death and dying .25 –.229 .03 .13 –.278 –.075 .00 .01
The medical staff support EOLC for dying patients in my Unit .29 .06 –.33 .16 –.175 .60 –.015 –.156
In my Unit, when a diagnosis with a likely poor outcome is made, families are informed of EOLC options .25 .025 –.425 .195 –.236 .59 .10 –.10
In my Unit, the team expresses its opinions, values and beliefs about providing care to dying patients .368 .035 –.16 .20 –.105 .57 .07 –.095
All members of the healthcare team in my Unit agree with and support EOLC when it is implemented .27 .089 –.248 .317 –.05 .538 –.119 –.096
In my Unit, a plan of care for the patient is clearly documented by the medical team… .27 –.047 –.31 .285 –.31 .50 .04 –.15
In my Unit, the critical care team and the patient’s primary medical or surgical team agree on a plan of care .278 .016 –.34 .238 –.21 .497 .05 –.107
There are policies/guidelines to assist in the delivery of EOLC in my Unit .307 –.01 –.10 .258 –.106 .347 .32 –.04
The provision of EOLC requires emotional detachment .00 .218 .01 –.06 –.19 –.25 –.085 –.159
I have learnt from other nurses how to provide EOLC .201 .180 –.198 .215 .106 .241 .026 .030
274
Factor
1 2 3 4 5 6 7 8
I have received in-service education that assists me to support and communicate with families of dying patients .324 –.090 .040 .216 –.055 .318 .627 –.302
I have received in-service education that assists me to provide care and manage patient symptoms at the EOL .289 –.117 .076 .219 –.068 .272 .597 –.324
My postgraduate nursing education included EOLC content relevant to the critical care context .246 .068 –.019 .148 –.110 .109 .461 –.115
I draw on evidence from the literature to provide EOLC to patients and their families .131 .216 –.282 .064 –.149 –.019 .457 –.263
Patients at the EOL require little nursing care –.049 .275 –.156 –.179 –.203 –.174 .336 –.132