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

Keywords

End of life, practices, critical care, intensive care, nurse, PARIHS framework, context, evidence, facilitation, survey, mixed methods, descriptive statistics, exploratory factor analysis, general linear model, palliative values, patient and family centred care, preparedness

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Abstract Background Critical care units are designed and resourced to save lives, yet the provision of endof-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’ iv

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.

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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 2.4.1 Organisational culture ............................................................................. 15 2.4.2 The physical environment ......................................................................... 17 2.4.3 Staffing ...................................................................................................... 18 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 2.7 Summary........................................................................................................... 27 3 METHODOLOGY ......................................................................................... 28 3.1 Introduction ...................................................................................................... 28 3.2 Mixed methods ................................................................................................. 28 3.3 Ethical considerations....................................................................................... 32 3.4 Summary........................................................................................................... 33 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 vi

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4.6 Data management and analysis ........................................................................ 37 4.7 Summary........................................................................................................... 39 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 5.6 Discussion......................................................................................................... 65 5.7 Summary........................................................................................................... 66 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 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 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 8.4.1 Descriptive statistics ............................................................................... 113 8.4.2 Exploratory factor analysis .................................................................... 114 8.4.3 Bivariate statistical analysis ................................................................... 118 vii

8.4.4 Multivariable statistical analysis............................................................ 119 8.5 Summary......................................................................................................... 121 9 PHASE THREE RESULTS ........................................................................ 122 9.1 Introduction .................................................................................................... 122 9.2 Phase three participants .................................................................................. 122 9.3 Demographic characteristics .......................................................................... 123 9.4 Descriptive statistics ....................................................................................... 127 9.5 Exploratory factor analysis ............................................................................. 129 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 endof-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 9.8 Assumption testing ......................................................................................... 166 9.9 Summary......................................................................................................... 167 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’ endof-life care practices? ..................................................................................... 186 10.4.1 Facilitation ......................................................................................... 186 10.4.2 Evidence ............................................................................................. 188 10.4.3 Context ............................................................................................... 190 10.4.4 Demographic explanatory variables .................................................. 191 10.5 Strengths and limitations ........................................................................ 194 10.6 Summary ................................................................................................. 201 11 RECOMMENDATIONS AND CONCLUSIONS ..................................... 203 11.1 Introduction ............................................................................................ 203 11.2 Recommendations for practice ............................................................... 203 11.3 Recommendations for education ............................................................ 206 11.4 Recommendations for research .............................................................. 208 11.5 Conclusions ............................................................................................ 210 viii

12 REFERENCES ............................................................................................. 213 13 APPENDICES............................................................................................... 232 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

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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 instrument.................................................................................................. 80 Table 7-4: Items deleted from the survey instrument following review by the expert panel ............................................................................................... 83 Table 7-5: Additional items included in the Critical care nurses’ end-of-life care practices section of the survey instrument ................................................ 85 Table 7-6: Additional items included in the Factors influencing the provision of end-of-life care section of the survey instrument...................................... 86 Table 7-7: Demographic characteristics of pilot test participants (n = 28) ................ 89 Table 7-8: Pilot test participants’ current workplace and participation in nursing work (n = 28)............................................................................................. 90 Table 7-9: Items in the patient and family centred decision making scale ................ 92 Table 7-10: Items in the explaining and providing information scale ....................... 92 Table 7-11: Items in the continuity of care scale ....................................................... 94 Table 7-12: Items in the emotional and practical support for patients and families scale ........................................................................................................... 94 Table 7-13: Items in the comfort care—environmental factors scale ........................ 95 x

Table 7-14: Items in the symptom management and comfort care scale ................... 96 Table 7-15: Items in the spiritual support scale ......................................................... 97 Table 7-16: Internal consistency and test-retest reliability of the a priori scales in the Critical care nurses’ end-of-life care practices section of the survey instrument ...................................................................................... 98 Table 7-17: Items in the organisational culture scale................................................. 99 Table 7-18: Items in the resources scale .................................................................. 100 Table 7-19: Items in the patient and family preferences scale ................................. 102 Table 7-20: Items in the nursing education and experience scale ............................ 103 Table 7-21: Items in the nurse practice knowledge scale ........................................ 104 Table 7-22: Items in the emotional support for nurses scale ................................... 105 Table 7-23: Items in the nurses’ end-of-life care values and beliefs scale .............. 106 Table 7-24: Items in the coordination of care delivery scale ................................... 107 Table 7-25: Internal consistency and test-retest reliability of the a priori scales in the Factors influencing the provision of end-of-life care section of the survey instrument .................................................................................... 108 Table 8-1: Items reverse scored prior to factor analysis .......................................... 113 Table 9-1: Demographic characteristics of phase three participants (n = 392) ....... 124 Table 9-2: Phase three participants’ location, workplace and participation in work (n = 392)......................................................................................... 125 Table 9-3: The mean and standard deviation for the 10 items in the Critical care nurses’ end-of-life care practices section most frequently undertaken based on their mean score (n = 392) ....................................................... 127 Table 9-4: The mean and standard deviation for the 10 most strongly agreed items in the Factors influencing the provision of end-of-life care section of the survey instrument based on their mean score (n = 392) ... 128 Table 9-5: Factor loadings for exploratory factor analysis with oblique rotation of Critical care nurses’ end-of-life care practices section of the survey 132 Table 9-6: Factor correlation matrix of Critical care nurses’ end-of-life care practices section of the survey instrument .............................................. 135 Table 9-7: Final factors, labels and Cronbach’s alphas for Critical care nurses’ end-of-life care practices section of the survey instrument .................... 136

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Table 9-8: Factor loadings for exploratory factor analysis with oblique rotation of Factors influencing the provision of end-of-life care section of the survey instrument .................................................................................... 139 Table 9-9: Factor correlation matrix for the Factors influencing the provision of end-of-life care section of the survey instrument.................................... 143 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................................................................................................ 144 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) ................................................................................ 145 Table 9-12: Psychometric properties of the summated scales from the Factors influencing the provision of end-of-life care section of the survey instrument................................................................................................ 146 Table 9-13: Spearman’s rho correlation coefficients between outcome variables and explanatory factors ........................................................................... 154 Table 9-14: Parameter estimates for information sharing model ............................. 156 Table 9-15: Parameter estimates for environmental modification model ................ 157 Table 9-16: Parameter estimates for emotional support model ............................... 158 Table 9-17: Parameter estimates for patient and family centred decision making model ....................................................................................................... 160 Table 9-18: Parameter estimates for symptom management model ........................ 161 Table 9-19: Parameter estimates for spiritual support model .................................. 162 Table 9-20: Comparison of practice models and contributing parameters .............. 164

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List of Figures

Figure 3-1: Three-phase exploratory sequential mixed methods design (adapted from Creswell & Plano Clark, 2007) ........................................................ 31 Figure 9-1: Flow chart of participants in phase three .............................................. 123 Figure 9-2: Scree plot of eigen values for factors in the Critical care nurses’ endof-life care practices section of the survey instrument ........................... 130 Figure 9-3: Scree plot of eigenvalues for factors in the Factors influencing the provision of end-of-life care section of the survey instrument ............... 137 Figure 9-4: Histogram of information sharing summated scale............................... 146 Figure 9-5: Boxplot of years of experience in nursing and information sharing practices .................................................................................................. 148 Figure 9-6: Boxplot of years of experience in nursing and emotional support ........ 149 Figure 9-7: Boxplot of years of experience in nursing and symptom management 151 Figure 9-8: Residual plot of emotional support practices model ............................. 166

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List of Abbreviations

ACCCN

Australian College of Critical Care Nurses

AACN

American Association of Colleges of Nursing

ANZICS

Australian and New Zealand Intensive Care Society

CCU

Coronary care unit

CFA

Confirmatory factor analysis

CVI

Content validity index

DAS

Death Anxiety Scale

DoHA

Department of Health and Ageing

EFA

Exploratory factor analysis

EOL

End of life

EOLC

End-of-life care

ESHF

End stage heart failure

FTE

Full-time equivalent

HDU

High dependency unit

ICU

Intensive care unit

I-CVI

Item content validity index

KMO

Kaiser-Meyer-Oklin

MSA

Measure of sampling adequacy

NHMRC

National Health and Medical Research Council

NiPCAS

Neonatal Palliative Care Attitude Scale

PAF

Principal axis factoring

PARIHS

Promoting Action on Research Implementation in Health Services

PCC4U

Palliative Care Curriculum for Undergraduates

PCQN

Palliative Care Quiz for Nursing

PEPA

Program of Experience in the Palliative Approach

S-CVI

Scale content validity index

QUT

Queensland University of Technology

URL

Uniform resource locator

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Statement of Original Authorship

The work contained in this thesis has not been previously submitted to meet requirements for an award at this or any other higher education institution. To the best of my knowledge and belief, the thesis contains no material previously published or written by another person except where due reference is made.

Kristen Ranse February 2013

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Grants and Publications

ACT Nursing & Midwifery Board 2008, Novice Researcher Grant, AU$3000.

Ranse, K. (2009, October). Intensive care nurses’ end-of-life care practices and beliefs. Paper presented at the 34th Australian and New Zealand Annual Scientific Meeting on Intensive Care, Perth, WA.

Ranse, K., Yates, P., & Coyer, F. (2012). End-of-life care in the intensive care setting: A descriptive exploratory qualitative study of nurses’ beliefs and practices. Australian Critical Care, 25(1), 4–12.

Ranse, K. (2012, October). Factors influencing the provision of end-of-life care in critical care settings. Paper presented at the 37th Australian and New Zealand Annual Scientific Meeting on Intensive Care, Adelaide, SA.

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Acknowledgements

This thesis was edited by Elite Editing, and editorial intervention was restricted to Standards D and E of the Australian Standards for Editing Practice.

This PhD journey would not have been possible without the assistance and support I have received from many people. First, I would like to acknowledge my principal supervisor, Professor Patsy Yates, and my associate supervisor, Dr Fiona Coyer, for their expert advice, continuing support and encouragement. I greatly appreciate and value the time and effort that they have contributed to this PhD research project and my research training during candidature.

I would like to thank the critical care nurses that contributed to each phase of this study. Without their enthusiasm for this study and their willingness to share their personal experiences of the provision of end-of-life care in critical care settings, this research would not have been possible.

Thank you to Dr Laurie Grealish, Dr Jan Taylor and Professor Paul Morrison, who encouraged me to undertake a PhD and continue to contribute to my development as a nursing academic. Thanks also to Professor Mary Cruickshank and my colleagues in the Disciplines of Nursing & Midwifery at the University of Canberra for your interest in my work and ongoing support.

This PhD would not be possible without the love and support of my husband, Jamie, and parents, Stuart and Marion Storey. Thanks for all of the emotional and practical support over the last six years. Finally, I would like to acknowledge my children, Charlotte, Sadie and Lucas, who have shared their lives so far with Mummy’s PhD. I hope that I can inspire and share a love of learning with you.

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1 INTRODUCTION The term ‘critical care’ encompasses a range of clinical units, including general and specialty intensive care units (ICUs), combined intensive care/coronary care units (CCUs), paediatric ICUs, emergency departments and aeromedical retrieval units (Drennan, Hicks, & Hart, 2010). These units have developed in response to advances in medicine and technology that have enhanced the ability to save lives and delay death. Patients are admitted to critical care units with traumatic injury, critical illness or an acute exacerbation of a chronic illness. Increasingly, patients have multiple comorbidities creating prognostic difficulties. The potential benefits of critical care for the patient and their likelihood of survival to discharge are just some of the admission criteria considered by the medical team in the allocation of critical care services (Judson & Fisher, 2006). The critical care setting is dominated by a culture of cure, and critically ill patients are monitored and treated using advanced technology and specialised care aimed at treating critical illness and saving lives.

Despite this curative focus, death remains an inevitable part of life. A review of the Australian and New Zealand Intensive Care Society (ANZICS) adult patient database revealed average overall Australian ICU mortality rates of approximately 10% (Moran, Bristow, Solomon, George, & Hart, 2008). Internationally, ICU mortality rates of between 15% and 35% have been reported (Seymour, 2001). The death of a patient in a critical care unit can occur suddenly during the provision of active treatment or following the withdrawal or withholding of life-sustaining treatment. An incidence of death following the withdrawal of life-sustaining treatment of between 49% and 90% has been reported in the literature (M. J. Bloomer, Triuvoipati, Tsiripillis, & Botha, 2010; Le Conte et al., 2010; Luce, 1997). Thus, despite difficulties in determining patient prognosis in the critical care patient population, more than half of all patient deaths in critical care are expected following a decision to withdraw or withhold life-sustaining treatment. Although critical care is dominated by a curative focus, the mortality rate of patients results in the provision of end-of-life care comprising a significant component of nursing work.

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The National Palliative Care Strategy 2010 (Australian Government Department of Health and Ageing [DoHA], 2010) acknowledges that definitions of end of life vary from the final days to the last two years of life (p. 19). In contrast, the definition proposed by Palliative Care Australia (2008) is not time bound. Instead, Palliative Care Australia defines end of life as ‘that part of life where a person is living with, and impaired by, an eventually fatal condition, even if the prognosis is ambiguous or unknown’ (p. 8). In the critical care environment, in which goals of care are predominantly focused on cure, limited attention has been given to defining what is meant by end of life. In practice, however, end of life is often considered the period of life following a decision to withdraw or withhold life-sustaining treatment, as death of the patient is an expected outcome. It is this phase of care that is the focus of the present study.

Previous authors have acknowledged the philosophical tensions that exist between palliative care and critical care (Davidson et al., 2002; Davidson et al., 2003; Wotton, Borbasi, & Redden, 2005). In particular, the holistic approach of palliative care can be at odds with the reductionist curative focus of critical care. Critical care units are designed and resourced to save lives, and the imposing technological imperative creates an environment that could disrupt the provision of a natural death incorporating patient and family centred holistic care. In fact, in this context, death can be viewed as a professional failure (Beckstrand, Callister, & Kirchhoff, 2006; Cartwright, Steinberg, Williams, Najman, & Williams, 1997; Halcomb, Daly, Jackson, & Davidson, 2004; McKeown, Cairns, Cornbleet, & Longmate, 2010). The provision of end-of-life care to patients and their families in the curative context of critical care thus presents unique challenges and important opportunities for critical care nurses engaged in this work. For example, patients are admitted to critical care units during an acute phase of illness or following traumatic injury, limiting the time for the critical care nurse to establish a relationship with the patient and the patient’s family (Beckstrand, Smith, Heaston, & Bond, 2008; LeConte et al., 2010; Nelson & Meier, 1999). This is further complicated by the fact that up to 95% of critically ill patients are cognitively impaired as a result of their illness, injury and/or medical management (Truog et al., 2008). In addition, the length of time between the withdrawal of life-sustaining treatment and subsequent death of the patient is relatively short (Efstathiou & Clifford, 2011). In a chart audit undertaken over a 122

month period in an Australian metropolitan ICU, the majority of patients (44%) died between one and six hours following withdrawal of life-sustaining treatment (M. J. Bloomer et al., 2010). This is consistent with figures reported in epidemiological studies in ICUs internationally (Hall, Rocker, & Murray, 2004; Wunsch, Harrison, Harvey, & Rowan, 2005). Thus, critical care nurses have limited time to establish relationships and provide comprehensive care to the patient at the end of life and to the patient’s family. This presents a unique challenge and stressor for critical care nurses engaged in this work (Efstathiou & Clifford, 2011).

Despite the limited time frame available for the delivery of end-of-life care, critical care nurses are in a unique position to control the timing and experience of death and dying for patients and their families (Seymour, 2001). The timing of removal of treatment and the dying trajectory can be controlled to create a natural death, whereby the demise of the patient appears unrelated to the removal of treatment (Seymour, 2001). Thus, death occurs naturally rather than as a result of the actions or inactions by medical professionals directly involved (Seymour, 2001; Timmermans, 2005). Previous research also suggests that implementation of a decision to withdraw life-sustaining treatment and the subsequent death of the patient can be delayed to enable family to accept the situation and/or relatives to gather at the patient’s bedside (Calvin, Lindy, & Clingon, 2009; Fridh, Forsberg, & Bergbom, 2009; Heland, 2006). However, these practices can subject the patient to prolonged and unnecessary suffering and place burden on finite critical care resources (Burns, Jacobs, & Jacobs, 2011; Crump, Schaffer, & Schulte, 2010).

Nurses in critical care tend to work alongside their medical colleagues (Seymour, 2001). They practice with a degree of autonomy and work in a context that supports high nurse-to-patient ratios. This context presents important opportunities for nurses to deliver skilled, comprehensive care to patients at the end of life and their families. Despite the frequency with which nurses provide end-of-life care in critical care units and the opportunities provided by the critical care practice context, evidence indicates nurses are not adequately prepared to provide care to patients at the end of life and their families. In a recent survey completed by 475 critical care nurses in the United States, only 15.5% of participants reported that their nursing training included compulsory content pertaining to withdrawal of life-sustaining treatment and 44% of 3

participants indicated that they had attended in-service about withdrawal of lifesustaining treatment (Kirchhoff & Kowalkowski, 2010). Limited coverage of end-oflife content in critical care texts has also been reported (Kirchhoff, Beckstrand, & Anumandla, 2003).

The ageing population combined with the institutionalisation of death in hospitals, rather than natural death at home, has contributed to a lack of exposure to death and dying in society. New nurses may have no prior experience with death and dying until confronted in their workplace with the expectation to care for a patient at the end of life. Conversely, experienced critical care nurses can develop a blunted emotional response to death and dying in their work whereby death becomes normalised through frequent exposure (Badger, 2005b; Shorter & Stayt, 2010). Inadequate preparation and support of nurses providing end-of-life care, in addition to the stress associated with the provision of this care, can compromise the quality of care afforded to patients and their families and contribute to poor retention of critical care nurses. Identification and development of resources and strategies to prepare and support nurses in the provision of end-of-life care are needed.

Limited research has been conducted in Australia on end-of-life care in critical care settings from a nursing perspective. Previous research has explored intensive care nurses’ perceptions of medical futility and their role in decision making and withdrawal of treatment (Heland, 2006) and the lived experience of intensive care nurses caring for patients having treatment withheld or withdrawn (Halcomb et al., 2004; Jones & FitzGerald, 1998). Each of these studies was undertaken from a qualitative approach, using small non-probability samples. These studies provide some insight into the issues but the ability to generalise the findings beyond the settings of the studies is limited. More recently, the findings of audits of medical records of patients who had died in an Australian ICU have been published (M. Bloomer, Lee, & O’Connor, 2010; M. J. Bloomer et al., 2010). The audits described the frequency of not-for-resuscitation orders, attendance at family meetings, treatment withdrawal and the specific interventions withdrawn. While these studies provide important information regarding end-of-life care practices in Australian ICUs, the use of chart audit as the primary source of data is limited because it assumes that such practices are consistently documented by care providers. Indeed, 4

the authors noted the absence of documentation regarding communication between the nurse and family in their setting (M. Bloomer et al., 2010). Similarly, a documentation audit undertaken in the United States found limited presence of critical care nurses at the end of life, but noted that it was likely due to a lack of nursing documentation rather than a lack of nursing care (Kirchhoff, Anumandla, Foth, Lues, & Gilbertson-White, 2004). Further research to identify the actual endof-life care practices of Australian critical care nurses using alternative methods is needed.

Internationally, qualitative research exploring various aspects of critical care nurses’ experiences of end-of-life care has been reported (Calvin et al., 2009; Espinosa, Young, Symes, Haile, & Walsh, 2010; Fridh et al., 2009; McKeown et al., 2010; McMillen, 2008; Vanderspank-Wright, Fothergill-Bourbonnais, Brajtman, & Gagnon, 2011). In addition, research conducted in the United States using both qualitative and quantitative approaches provides insight into critical care nurses’ perceptions of barriers to and facilitators of end-of-life care (Beckstrand et al., 2006; Beckstrand & Kirchhoff, 2005; Kirchhoff & Beckstrand, 2000; Nelson et al., 2006). However, several differences exist between the critical care environments of the United States and Australia, including in nursing roles, staffing structure and patient acuity (Ogle, Copley, Bethune, & Parkin, 2004).

To evaluate and improve the care that dying patients and their families receive and to support nurses in the provision of optimal end-of-life care, a better understanding of the end-of-life care practices of critical care nurses and the factors influencing these practices is required.

1.1

Purpose

The purpose of this three-phase exploratory sequential mixed methods study was to identify the end-of-life care practices of Australian critical care nurses, the factors influencing the provision of end-of-life care and the factors associated with specific end-of-life care practices. Phase one involved a qualitative exploration of the end-of5

life care experiences and practices of critical care nurses through semi-structured interviews at an Australian tertiary teaching hospital. The findings of phase one, combined with a review of the literature, contributed to the development of a survey instrument in phase two. The survey instrument was reviewed by an expert panel and pilot tested with a convenience sample of critical care nurses to obtain preliminary evidence of the reliability and validity of the tool. The quantitative phase of this study, phase three, utilised the survey instrument to survey a national sample of critical care nurses to identify the frequency of select end-of-life care practices and the factors influencing these practices.

Specifically, the key research questions in this study are: 1. What are the most frequently reported end-of-life care practices of Australian critical care nurses? 2. What are the factors influencing the provision of end-of-life care as perceived by Australian critical care nurses? 3. What factors are associated with Australian critical care nurses’ end-of-life care practices?

1.2

Structure of this thesis

This chapter has provided a brief introduction to the key issues surrounding end-oflife care in the critical care context and significance of this study to nursing practice. The purpose of this study was identified and three key research questions presented.

Chapter Two provides a critical appraisal of nursing and sociological literature related to end-of-life care in critical care contexts. Clarke et al.’s (2003) domains of end-of-life care and the Promoting Action on Research Implementation in Health Services (PARIHS) framework (Kitson, Harvey, & McCormack, 1998; RycroftMalone et al., 2002) are discussed and then used as conceptual frameworks to organise the literature reviewed and presented in Chapter Two.

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Mixed methods is introduced in Chapter Three as the methodological approach used in this study. The key strengths and criticisms of mixed methods are discussed and the three-phase exploratory sequential mixed methods design utilised in this study is described. Chapter Three concludes following a discussion of the ethical considerations pertinent to the study.

Chapter Four describes the methods used in phase one of this study to interview a small sample of critical care nurses. The findings of analysis of phase one interviews are presented in Chapter Five.

Chapter Six describes the methods used in phase two of the study to develop and test a survey instrument. Chapter Seven documents the results of phase two that provide preliminary evidence of the validity and reliability of the survey instrument.

Phase three consisted of a national survey of critical care nurses’ end-of-life care practices and the factors influencing the provision of end-of-life care using the survey instrument developed in phase two. Chapter Eight describes phase three methods, including the sample and setting, procedure, data management and analysis. The results of descriptive statistics, exploratory factor analysis (EFA) and multivariable analysis of data obtained from responses to the national survey are presented in Chapter Nine.

Chapter Ten provides a discussion of the key findings of this study pertaining to each research question. This chapter concludes following a discussion of the strengths and limitations of this study. The findings of this study raise a number of important implications. Recommendations for practice, education and research are outlined and concluding remarks are presented in Chapter Eleven.

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2 LITERATURE REVIEW 2.1

Introduction

This chapter provides a review of nursing, critical care and sociological literature related to end-of-life issues in critical care contexts to provide a contextual base for this study and situate the contribution of this study within existing nursing knowledge and practice. The chapter will first provide a critical appraisal of the literature pertaining to the end-of-life care experiences and practices of critical care nurses. Clarke et al.’s (2003) six domains of end-of-life care will be introduced and then used as a guiding framework to present empirical evidence related to critical care nurses’ end-of-life care practices. The PARIHS framework (Kitson et al., 1998; Rycroft-Malone et al., 2002) will then be described, and its role as a conceptual framework to identify the factors that influence the provision of end-of-life care in critical care settings will be discussed. Each of the key elements of the PARIHS framework—context, evidence and facilitation—will then be defined and a critical review of the literature for each element as it relates to the provision of end-of-life care in critical care settings will be presented.

2.2

Critical care nurses’ end-of-life care practices

Few studies have explored actual nursing practices undertaken in the provision of end-of-life care in the critical care setting. Clarke et al. (2003), using a modified Delphi approach involving 36 expert clinicians in the United States, identified seven domains of end-of-life care and their associated quality indicators for the intensive care setting. The seven domains identified were patient and family centred decision making, communication, continuity of care, emotional and practical support, symptom management and comfort care, spiritual support, and emotional and organisational support for intensive care clinicians. The domains and quality indicators were then reviewed by 15 nurse-physician teams to identify interventions and behaviours that could be implemented to improve these indicators (Clarke et al., 2003). Although Clarke et al.’s findings provide some insight into the end-of-life care practices of critical care nurses, the sample was limited to participants 8

considered clinical experts, and empirical testing and validation of behaviours identified with larger samples was not undertaken. The practice of expert nurses differs to those of nurses with less experience in and knowledge of end-of-life care. In an Australian study that compared the practice behaviours of specialist intensive care nurses with those of generalist nurses working in intensive care, a qualitative difference was noted in the knowledge and practice of these nurses (Fairweather & Gardner, 2000).

The domains of end-of-life care identified by Clarke et al. (2003) broadly identify relevant areas of critical care nurses’ end-of-life care practices. As such, the domains were selected as a framework to present the literature review related to end-of-life care practices for this thesis and inform the development of the survey instrument. Specifically, a critical review of the literature related to critical care nurses’ end-oflife care experiences and practices was undertaken and is presented as it relates to the domains of patient and family centred decision making, communication, continuity of care, emotional and practical support, symptom management and comfort care, and spiritual support. The domain emotional and organisational support for intensive care clinicians will not be addressed in this section as it does not relate directly to the care of the patient; however, this domain will be addressed later in this chapter when the factors influencing the provision of end-of-life care are considered.

2.2.1

Patient and family centred decision making

Although most people state that their final wish is to die at home, the reality is that most die in a hospital or other health care institution (Kellehear, 2008). Critically ill and dying patients are admitted to acute care hospitals, where a cascade of intervention can occur in an attempt to treat illness, postpone death and prolong life. The institutionalisation of death and dying through admission of critically ill and dying patients to hospital affords health care professionals increased social control over these processes (Hart, Sainsbury, & Short, 1998). Practices related to patient and family centred decision making can assist critical care nurses to share control of death and dying with the patient and family. 9

Position statements published by the ANZICS (2003) and the American College of Critical Care Medicine (Truog et al., 2008) provide support for the participation of the patient and family in decision making. The ANZICS position statement acknowledges that, when considering decisions to withhold or withdraw treatment, the preference of the patient (if known) or their likely preference as expressed by their next of kin should be considered. The ANZICS position statement does not specifically address the role of the nurse or the care to be provided following the withholding or withdrawal of treatment except to state that an alternative, comfortfocused care plan should be implemented. The statement published by the American College of Critical Care Medicine provides recommendations for the withholding and withdrawal of treatment, the provision of end-of-life care and the continued care of the family following the death of the patient (Truog et al., 2008). This statement (Truog et al., 2008) supports the participation of the patient and family in decision making regarding withholding and withdrawing treatment and the subsequent care provided, highlighting family-centred care as a ‘comprehensive ideal for managing end-of-life care’ (p. 953). The inclusion of the patient and family in decision making regarding withholding or withdrawing life-sustaining treatment and the provision of end-of-life care, as well as their involvement in the provision of this care for the patient at the end of life is important (Kirchhoff et al., 2000) and can influence the experience of end-of-life care for the patient and family. Patient and family centred decision making is thus accepted as an important component of care.

2.2.2

Communication and continuity of care

Communication between health care providers and patients at the end of life and their families and continuity of care are important practices in the provision of endof-life care. Providing and explaining information to patients and their families have been identified in previous research as practices undertaken by critical care nurses (Borbasi, Wotton, Redden, & Chapman, 2005; Fridh et al., 2009; McClement & Degner, 1995). However, the actual content of this information can vary. Fridh et al. (2009) found that critical care nurses communicated with families about the withdrawal of treatment and dying process, yet communication with patients was on 10

a more superficial level, such as who was in the room and the physical nursing care they were receiving. Although continuity of care has been cited as a component of good end-of-life care (Hov, Hedelin, & Athlin, 2007; Kirchhoff et al., 2000) and lack of continuity as a barrier to the provision of end-of-life care (Kirchhoff et al., 2000; Vanderspank-Wright et al., 2011), little discussion of the practices that comprise and support continuity of care for patients at the end of life and their families in the critical care context have been provided.

2.2.3

Emotional and practical support

The provision of emotional and practical support to family members has been recognised as important to quality end-of-life care (Halcomb et al., 2004; Kirchhoff & Beckstrand, 2000; Puntillo et al., 2001). Halcomb et al. (2004) found that during the provision of end-of-life care, the presence of family shifted the nurse’s attention from the patient to the family. Nurses provide emotional and practical support to patients and their families just by being there, providing a physical presence (Hodde, Engelberg, Treece, Steinberg, & Curtis, 2004; Thompson, McClement, & Daeninck, 2006) and providing support and time for families to be alone with the patient after death (Beckstrand & Kirchhoff, 2005; Bloomer, Morphet, O’Connor, Lee, & Griffiths, in press). However, these practices could be constrained by the pre-existing relationship between the nurse and family, and the nurse’s personal comfort with the provision of end-of-life care.

In addition to physical presence, emotional and practical support can be provided through interventions designed to create positive experiences and memories for the families of a patient at the end of life. Although reflective accounts have been published in the literature documenting nurses’ engagement in memory making, positive experiences for patients at the end of life and their families (Faas, 2004), few empirical studies have reported this area of practice (Coombs, 2010; Hansen, Goodell, DeHaven, & Smith, 2009; Vanderspank-Wright et al., 2011). Recently, Vanderspank-Wright et al. (2011) identified a theme providing memories in which

11

nurses organise or create positive and memorable experiences for the patient and the patient’s family.

2.2.4

Symptom management and comfort care

Clarke et al.’s (2003) symptom management and comfort care domain incorporates the physical care of the patient at the end of life. Maintaining patient dignity and managing patient pain are two factors that have been identified as important to endof-life care in previous studies (Beckstrand et al., 2006; Halcomb et al., 2004; Kirchhoff & Beckstrand, 2000; Kirchhoff et al., 2000). In a national survey of a stratified random sample of 906 American critical care nurses’ (response rate 30%) knowledge, beliefs and practices related to end-of-life care, 78% of respondents believed that patients sometimes or frequently received inadequate pain management (Puntillo et al., 2001). Similarly, an Australian study of 17 registered nurses’ perceptions of providing end-of-life care to patients with end stage heart failure (ESHF) in acute care and community settings, difficulty in managing pain and breathlessness was identified (Wotton et al., 2005).

Other interventions such as positioning, pressure area care and hygiene practices including mouth care and eye care are important practices in the provision of comfort care to the patient at the end of life (Latour, Fulbrook, & Albarran, 2009; Puntillo et al., 2001). Moreover, the continued use of interventions that do not provide comfort such as cardiac monitoring must be reviewed (Mulligan, 2005; Truog et al., 2008). In the generally short period between withdrawal of treatment and death of the patient, critical care nurses must provide comprehensive symptom management and comfort care to meet the physical care needs of the patient at the end of life.

2.2.5

Spiritual support

Spiritual support is widely recognised as a component of holistic care and is included as a domain of care in Clarke et al.’s (2003) framework. Exley (2004) states that the 12

provision of spiritual support is ‘one of the most difficult “needs” to assess and meet’ (p. 117), with today’s multicultural society and the large number of religions contributing to the challenge of providing spiritual support. The practices undertaken by critical care nurses in the provision of spiritual care to patients at the end of life and their families were not identified in the literature reviewed.

2.3

Factors influencing the provision of end-of-life care

In addition to identifying the current end-of-life care practices of critical care nurses, this study aimed to identify the factors influencing the provision of end-of-life care, and the relationships between these factors and specific end-of-life care practices. Due to the limited research in this field and the broad range of social and personal factors that could potentially influence end-of-life care practices, an overarching framework was used to guide and organise the literature review to identify the important variables to be examined to achieve this aim. Specifically, the PARIHS framework was used to capture the complexity of context, evidence and facilitation factors that can influence nursing practice.

The PARIHS framework describes the factors influencing the uptake of evidence in clinical practice (Kitson et al., 1998). The PARIHS framework consists of three key elements: context, evidence and facilitation (Rycroft-Malone et al., 2002). In comparison to linear practice models in which component factors are considered in isolation, the authors of this framework suggest that each element should be considered simultaneously, acknowledging the interdependence of the elements and capturing the complexity and reality of clinical practice (Kitson et al., 1998). Each element is measured on a high–low continuum. Most successful implementation of uptake of evidence or a specified change in practice occurs when each element is rated as high. When an element is rated as low, the influence of this element may be overcome if other elements are rated highly (Kitson et al., 1998).

An assumption implicit in this conceptual framework is that implementation of a specified change in practice—the outcome variable—will improve the quality of 13

patient care. In the context of the current study, the outcome variable is critical care nurses’ end-of-life care practices as described by nurses themselves. This study is limited, therefore, to the perspective of the critical care nurses providing this care. It does not consider the perspectives of the recipients of this care, or attempt to define good end-of-life care.

A further assumption of the framework is that each of the elements and subelements defined in the framework are discrete yet equally important variables influencing practice (Kitson et al., 1998; Kitson et al., 2008). Since the framework was originally developed, conceptual analyses based on a critical review of the literature has been undertaken on each element of the framework (Harvey et al., 2002; McCormack et al., 2002; Rycroft-Malone et al., 2002). The findings of these analyses and a critical synthesis of the published literature pertaining to the PARIHS framework (Helfrich et al., 2010) indicate that some elements and subelements within the framework lack conceptual clarity and that overlap between subelements exists. Although the framework’s original authors have suggested that the key elements of the framework are interdependent (Kitson et al., 1998), schematic representation of the elements on a dichotomous continuum alludes to linearity, rather than multidimensionality (Helfrich et al., 2010). Reported use of the PARIHS framework in empirical research mainly includes the use of the key elements of the framework as a guide to change practice or evaluate changes in practice post hoc (Helfrich et al., 2010; RycroftMalone et al., 2002). Further empirical research is needed to test this conceptual framework (Rycroft-Malone, Seers, et al., 2004). Specifically, testing of the relationships between the elements of the framework is required to understand the importance of the individual elements and the relationships between these elements (Rycroft-Malone et al., 2002). In the current study, each of the elements and subelements (that is, factors influencing the provision of end-of-life care) are examined as discrete concepts. However, the relationships between these factors and the relative importance of these factors from the perspective of critical care nurse participants are examined through multivariable analyses.

The key elements of the PARIHS framework—context, evidence and facilitation— thus provide an organising framework to capture the complexity of factors that can influence nursing practice. In the following section, a definition for each of these 14

elements and the relevance of each element to the study of factors influencing the provision of end-of-life care in critical care settings is examined.

2.4

End-of-life care in the critical care setting—Context

In the PARIHS framework, the element context includes all aspects of the setting where ‘practice takes place’ (McCormack et al., 2002, p. 94). Conceptual analysis of the element context identified culture, the physical environment, leadership and evaluation of performance as factors contributing to the context of the practice setting (McCormack et al., 2002; Rycroft-Malone et al., 2002). The critical care setting is a practice context that has a number of unique features. Three specific aspects of the context that could influence the provision of end-of-life care by nurses in the critical care setting are discussed below: organisational culture, the physical environment and staffing.

2.4.1

Organisational culture

The organisational culture of critical care is dominated by a curative focus, yet practice is surrounded in uncertainty and ambiguity related to patient prognosis and treatment decisions. Patients can be admitted to critical care units for a trial of lifesustaining treatment, sparking a cascade of interventions implemented through decisions by the medical team. The decision to withdraw these interventions appears more difficult, requiring consensus among the health care team and between the health care team and the patient’s family (Timmermans, 2005).

Critical care nurses can experience stress and dissatisfaction related to the curative treatment of a patient that they perceive will not recover. Heland (2006) interviewed seven intensive care nurses to obtain their perceptions and experiences of medical futility. The findings of the study identified that medical futility was not a concept that could easily be defined and nurses participating in the provision of treatment 15

deemed futile may experience moral distress and frustration (Heland, 2006). Similarly, in a survey of problems with decision making by critical care nurses, the continuation of curative treatment when the patient is dying (poor prognosis) was identified as a major source of dissatisfaction (Bucknall & Thomas, 1997). For some, the provision of futile treatment is considered inflicting harm on the patient (Halcomb et al., 2004). Other studies have also captured nurses’ expressions of the provision of futile treatment through use of emotive terms by participants such as torturing and flogging the patient (Badger, 2005a; Halcomb et al., 2004; Kirchhoff et al., 2000; McKeown et al, 2010).

Despite this curative focus, death remains an inevitable part of life. The death of a patient can be viewed as a professional failure by medical staff in a culture focused on cure (Beckstrand et al., 2006; Cartwright et al., 1997). Halcomb et al. (2004) also identified the perception of death as failure by intensive care nurses in the findings of their study. Perceived professional failure following the death of a patient and the provision of futile care have been identified as possibly contributing to stress and burnout among critical care nurses (Badger, 2005a; Borbasi et al., 2005; Cartwright et al., 1997; Davidson et al., 2002; Halcomb et al., 2004; Heland, 2006).

Qualitative studies undertaken in Australia have reported the exclusion of nurses from decision making related to withdrawal of life-sustaining treatment (Halcomb et al., 2004) and in some units, unilateral decision making by medical staff (Heland, 2006). Nurses who are experienced and able to clearly articulate their thoughts are more likely to contribute to the decision-making process (Heland, 2006). Despite a general lack of participation in the decision-making process, when a decision is made to withdraw or withhold life-sustaining treatment, critical care nurses report that they are left to manage the withdrawal of treatment and care of the patient at the end of life (Halcomb et al., 2004; Heland, 2006). These perceptions are supported by the findings of a survey of critical care nurses in the United States in which 45% of participants identified that doctors were rarely or never present at the patient’s bedside during treatment withdrawal and 30.3% of participants identified that doctors were sometimes present (Kirchhoff & Kowalkski, 2010).

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2.4.2

The physical environment

The physical environment of the practice setting is important to the delivery of nursing care. The provision of end-of-life care in non-palliative care settings such as acute medical and cardiac wards has been identified as being difficult (Nordgren & Olsson, 2004; Wotton et al., 2005), as these settings are designed to support the care of acutely ill rather than dying patients. Generally, the physical environment of critical care units is designed to be open plan to permit the observation of critically ill patients and improve staff access (Bloomer et al., in press). Critical care units are noisy environments with constant activity. The health care team and ancillary staff, the provision of patient care and technological interventions utilised in monitoring and treating critically ill patients are some of the factors that contribute to noise (Christenson, 2007; Monsen & Edell-Gustafsson, 2005) and activity levels.

Several studies have identified lack of space and privacy as barriers to end-of-life care by nurses in acute and critical care settings (Bloomer et al., in press; Borbasi et al., 2005; Calvin et al., 2009; Fridh et al., 2009; Jackson, Purkis, Burnham, Hundt, & Blaxter, 2010; McKeown et al., 2010; Thompson et al., 2006). The care of a dying patient in a single room has been identified as important in maintaining patient dignity, providing privacy for the patient and the patient’s family and allowing unrestricted visiting. However, placing patients in a single room can isolate them from nursing staff and pose a barrier to nurses being with dying patients (Davidson et al., 2003). The availability of facilities for use by the family, such as a quiet room to congregate, has also been identified as important (Kirchhoff et al., 2000), yet these facilities are often lacking in critical care units (Bloomer et al., in press). In addition, previous Australian research has identified that non-palliative care areas lack appropriate physical resources such as specialised mattresses and pillows, to provide optimal care for dying patients (Davidson et al., 2003).

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2.4.3

Staffing

Staffing is another aspect of the practice context that is unique in the critical care setting. High nurse-to-patient ratios exist in critical care settings in Australia. These patient-care ratios are supported by position statements from both the Australian College of Critical Care Nurses (ACCCN, 2003) and the Joint Faculty of Intensive Care Medicine (JFICM, 2003) that outline that ventilated patients require a nurse-topatient ratio of 1:1 and patients classified as high dependency are cared for in a 1:2 nurse-to-patient ratio. These high nurse-to-patient ratios provide a staffing environment in critical care in which patients at the end of life and their families can receive comprehensive care and support (Campbell, 2006; McKeown et al., 2010).

Lack of staff and time constraints have been identified as barriers to end-of-life care in acute and critical care settings (Beckstrand et al., 2006; Thompson et al., 2006). In acute medical wards, lack of staff can compromise nurse-patient ratios if patients that are dying are not afforded the usual staffing ratio (Thompson et al., 2006). Ciccarello (2003) recommends that quality care of a dying patient requires a full-time nurse and warns against nurse managers allocating care of the dying patient last, based on the belief that they require little care. Other authors support this view, highlighting that palliative care is not implemented when ‘nothing more can be done’ (Thelan, 2005, p. 34), but requires extensive nursing care focused on the holistic needs of patients and their families (Davidson et al., 2002; Rushton, Williams, & Sabatier, 2002; Thelan, 2005).

Although staffing levels in critical care are supported by position statements, critical care units in Australia are experiencing nursing staff shortages and poor retention of experienced nurses (Ogle et al., 2004; Morrison, Beckmann, Durie, Carless, & Gillies, 2001). The staffing skill mix can result in the allocation of casual or junior nurses to care for the dying patient while experienced nurses are allocated care of critically ill patients (Beckstrand et al., 2006). This allocation could be influenced by the curative culture of critical care with care of the patient at the end of life provided by a junior nurse to enable experienced critical care nurses to focus on the care of patients whose lives could be saved.

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2.5

End-of-life care in the critical care setting—Evidence

Although some nurses equate evidence with research (Rycroft-Malone, Harvey, et al., 2004), within the PARIHS framework, the evidence element is broadly defined to include all types of evidence that inform clinical practice, including research evidence derived from scientific studies, clinicians’ practice knowledge and the patient’s experience and preferences (Rycroft-Malone, Seers, et al., 2004). Evidence drawn from these different sources can be conflicting and it is important that evidence be critically appraised prior to changing or implementing the evidence in practice (Rycroft-Malone, Seers, et al., 2004). Research evidence, nurse practice knowledge and patient and family preferences are sources of evidence that inform critical care nurses’ end-of-life care practices.

2.5.1

Research

Guidelines and policies developed from research evidence or expert opinion are important in maintaining minimum standards and providing guidance for clinical practice. The ANZICS (2003) position statement on withholding and withdrawing treatment, the NSW Department of Health’s (2005) Guidelines for End-of-Life Care and Decision Making and Palliative Care Australia’s (2005) Standards for Providing Quality Palliative Care for all Australians are three documents that provide guidance for critical care nurses regarding end-of-life decision making and the provision of end-of-life care. Although the ANZICS position statement is specific to the intensive care setting, it only provides broad statements around the withdrawal and withholding of treatment and does not specifically address the role of the critical care nurse or provide guidance for the management of a patient at the end of life. The NSW Department of Health Guidelines and the Palliative Care Australia standards are broad high-level standards developed to guide end-of-life decision making and end-of-life care across community and acute settings. In addition, the Australian Government National Health and Hospitals Reform Commission (2009) provides broad recommendations regarding end-of-life care, supporting the provision of endof-life care, including specialist palliative care across all care settings. Thus, end-of19

life care needs to be available where people need it. Critical care is a unique practice context and further specific guidance, including best practice guidelines and policies, to support the provision of end-of-life care in critical care settings is required (Davidson et al., 2002; Halcomb et al., 2004).

From an organisational perspective, the development of policies and guidelines that are contextually relevant at a local level are also important in maintaining minimum standards and improving the quality of care provided. Policies and guidelines can assist clinicians by providing prompts or cues for their practice. In two separate interventional studies that utilised a standardised order form to guide end-of-life care, nurses reported satisfaction with the form in guiding their practice, although no change in the quality of end-of-life care was identified in the findings (Hall et al., 2004; Treece et al., 2004).

Previous research has identified lack of guidelines as a barrier to providing end-oflife care (Nordgren & Olsson, 2004). In a study undertaken in 15 ICUs in North America, all policies, protocols, guidelines, standing orders and forms for documenting end-of-life care were analysed to identify content and how they could be altered to improve the quality of end-of-life care (Clarke et al., 2004). Clarke et al. (2004) found that the content of most documents was related to symptom management and comfort care and few documents considered patient and family decision making, communication, emotional support or spiritual support. In a recent survey of a random sample of critical care nurses undertaken in the United States, no use of clinical practice guidelines was reported by participants (Kirchhoff & Kowalkowski, 2010).

2.5.2

Nurse practice knowledge

The Australian Council of Healthcare Standards Guidelines for Intensive Care Units (ACHS, 1997) state that a minimum of 50% of registered nurses employed in an ICU 20

should have postgraduate critical care qualifications. The ACCCN (2003) advocate that 75% of nurses with qualifications is ideal. Although the majority of nurses employed in critical care units hold postgraduate qualifications, knowledge of endof-life care can be limited. Campbell (2002) argues that, despite the frequency with which nurses in critical care units provide care for patients at the end of life, critical care courses maintain a curative focus and end-of-life content, including comfort care of the dying patient, is largely absent. This view is supported by a content analysis of graduate nursing education curricula in the United States that identified a lack of end-of-life care and/or palliative care content in graduate programmes (Paice et al., 2006). Paice et al. (2006) suggest that lack of content of end-of-life care in graduate programmes affects the quality of end-of-life care. Although specific research has not been undertaken in Australia in regard to end-of-life care content in postgraduate critical care curricula, a study of critical care courses provided in higher education institutions in Australia identified inconsistencies in course content (both practical and theoretical) (Aitken, Currey, Marshall, & Elliott, 2006).

In addition to postgraduate education, continuing professional development and critical care textbooks are key resources used by critical care nurses to enhance their knowledge base (Kirchhoff et al., 2003; Paice et al., 2006). Continuing professional development opportunities in critical care settings focus on curative interventions and lack end-of-life content. Kirchhoff and Kowalkowski (2010) reported that only 33.8% of critical care nurses that responded to their survey identified content related to withdrawal of life-sustaining treatment in their critical care unit orientation program and 44% of respondents reported attendance at in-service related to withdrawal of life-sustaining treatment.

A content analysis of critical care nursing texts using the American Association of Colleges of Nursing (AACN) end-of-life content areas as a framework revealed that end-of-life care content was also lacking in texts (Kirchhoff et al., 2003). Ethical and legal issues, brain death and organ donation were content most commonly covered in texts; however, less than half of the 14 texts reviewed covered these topics. Three of the texts reviewed did not include any content related to end-of-life care. Similarly, in the ACCCN’s Critical Care Nursing textbook (Elliott, Aitken, & Chaboyer, 2012) apart from an organ donation chapter, end-of-life care content is limited to just a few 21

pages that provide a broad overview of key issues in end-of-life care for the patient, family and nurse and a discussion of end-of-life decision making. The lack of content in regard to end-of-life care reflects the dominance of the medical discourse and curative focus of critical care and can influence critical care nurses’ end-of-life care knowledge and associated practices.

Nurses can also draw on their personal knowledge and experience to inform their practice. Several studies have identified that nurses learn through personal experience in the provision of end-of-life care (Fridh et al., 2009; Zomorodi & Lynn, 2010b). Beckstrand and Kirchhoff (2005) reported that nurses draw on their own personal experiences of death and dying of a family member or friend to inform their practice. Others studies have identified a lack of experience in caring for patients at the end of life and a lack of knowledge as barriers to end-of-life care (Davidson et al., 2003; Nordgren & Olsson, 2004; Rodriguez, Barnato, & Arnold, 2007; Thompson et al., 2006).

2.5.3

Patient and family preferences

Patient (and family) preferences should be considered when reviewing evidence to inform practice in the clinical setting (Kitson et al., 1998). Although the patient’s preference is considered important evidence informing practice, it can be difficult to ascertain the preferences of critically ill patients due to cognitive impairment as a result of illness, injury or medical management. In these circumstances, the health care team seeks an understanding of the patient’s potential view, as expressed by the patient’s next of kin or significant other (ANZICS, 2003). Once consensus is reached among the medical team to withhold or withdraw treatment, agreement of the next of kin or legal authority is sought (ANZICS, 2003). Although the burden of end-of-life decision making should not rest with the family, some participants in Halcomb et al.’s (2004) study perceived that families are sometimes over involved in decision making and feel responsible for any decisions made.

22

Several studies have identified that families misunderstand the meaning of the patient’s illness (Badger, 2005b) and life-support/life-saving measures (Beckstrand & Kirchhoff, 2005; Kirchhoff & Beckstrand, 2000). In addition, lack of acceptance of a patient’s prognosis by family members and family requesting additional treatment despite the patient’s wishes pose barriers to end-of-life care. It has been suggested that keeping families informed of the patient’s condition, treatment plan and possible outcomes of treatment options facilitates transition to end-of-life care (Badger, 2005b; Borbasi et al., 2005; Norton, Tilden, Tolle, Nelson, & Eggman, 2003).

The concept of timing in relation to withdrawal of life-sustaining treatment and the family’s preferences and experience has also been noted in the literature (Calvin et al., 2009; Fridh et al., 2009; Heland, 2006; Jones & Fitzgerald, 1998; Seymour, 2001) Previous research suggests that implementation of withdrawal of lifesustaining treatment and the subsequent death of the patient can be delayed to enable family to accept the situation and/or relatives to gather at the patient’s bedside (Calvin et al., 2009; Fridh et al., 2009; Heland, 2006). However, this practice can subject the patient to prolonged and unnecessary suffering and place burden on finite critical care resources (Burns et al., 2011; Crump et al., 2010).

2.6

End-of-life care in the critical care setting—Facilitation

Facilitation within the PARIHS framework is narrowly defined as ‘a technique by which one person makes things easier for others’ (Rycroft-Malone et al., 2002, p. 177). This definition focuses on the role of one person, an appointed facilitator, in supporting others to change practice through processes of ‘enabling and helping rather than telling or persuading’ (Harvey et al., 2002, p. 585). Helfrich et al. (2010) identifies that the limitation of this definition of facilitation is that it does not capture other possible facilitators of practice change, including interventions that may support implementation of a specified practice. In a conceptual analysis of the element facilitation, Harvey et al. (2002) found varied descriptions and uses of the term facilitation in the existing health literature. For the purpose of the current study, 23

facilitation was more broadly defined as the process of making things easier. The transition from curative to comfort-only care and the provision of end-of-life care in the critical care setting may be facilitated by the emotional support provided to the critical care nurse, the beliefs and values of the nurse and factors influencing the coordination of care delivery.

2.6.1

Emotional support for nurses

Nurses in critical care units are frequently exposed to human suffering and death not experienced in other workplaces. Previous research has identified coping strategies used by critical care nurses (Badger, 2005a; Espinosa et al., 2010). In a recent study involving interviews with eight critical care nurses, Shorter and Stayt (2010) identified that critical care nurses were complacent towards death and they suggest that this may be a coping strategy for these nurses. Alternatively, nurses who are not comfortable with the provision of end-of-life care can cope by focusing on technical aspects of care, avoiding interpersonal interaction and compromising the care provided to the patients and their families (Badger, 2005a; McClement & Degner, 1995; Shorter & Stayt, 2010). For a nurse to be there for patients at the end of life and their families, they need to feel comfortable with being there themselves (Thompson et al., 2006).

The provision of end-of-life care in critical care units can contribute to stress and burnout among critical care nurses (Shorter & Stayt, 2010). In addition to personal coping strategies, critical care nurses can seek emotional support from informal and formal support mechanisms in the workplace. Several studies have identified that critical care nurses draw on informal support provided by their colleagues (Halcomb et al., 2004; Jones & Fitzgerald, 1998; Kirchhoff et al., 2000; McClement & Degner, 1995; Shorter & Stayt, 2010), rather than formal support such as debriefing (Halcomb et al., 2004; Jones & Fitzgerald, 1998). A national survey of critical care nurses undertaken in the United States found that counselling and debriefing rarely (38%) or never (49%) occurred (Puntillo et al., 2001). Identification and implementation of strategies to support nurses are required to maintain quality care 24

for patients and their families and to minimise stress and eliminate burnout among critical care nurses (Davidson et al., 2002).

2.6.2

Nurses’ end-of-life care values and beliefs

Nelson (2006) identified that personal attitudes and behaviours are the most important barriers to end-of-life care and also the most difficult to change. Nurses’ values and beliefs could be influenced by the dominant medical discourse and curative culture of critical care, as well as their personal knowledge and past experiences (Nelson, 2006). The values and beliefs of critical care nurses influence the facilitation of end-of-life care and nurses’ engagement in select practices. Two alternate views of end-of-life care in critical care settings have been identified in the current literature. Some critical care nurses share the perception of death as failure and this perception could pose as a barrier to end-of-life care (Beckstrand et al., 2006). Previous research has also identified that some critical care nurses view the provision of care to patients at the end of life and their families as a privilege (Calvin, Kite-Powell, & Hickey, 2007; Fridh et al., 2009; Vanderspank-Wright et al., 2011). Strategies targeted at changing personal attitudes rather than the broader organisational culture may be more effective in reducing barriers and improving the provision of end-of-life care in critical care settings (Nelson, 2006).

2.6.3

Coordination of care delivery

Issues related to the coordination of care delivery are pertinent to the care of patients at the end of life and their families in critical care. Previous research has identified lack of communication in relation to prognosis, lack of information and conflicting information from different health care providers as sources of dissatisfaction for the families of patients dying in hospital (Rogers, Karlsen, & Addington-Hall, 2000). Poor communication and lack of consensus have also been identified as barriers to end-of-life care in research undertaken in critical care settings (Espinosa et al., 2010; Vanderspank-Wright et al., 2011). 25

Fragmented care delivery occurs as a result of the critical care team, the patient’s primary medical team, nurses and allied health care providers independently reviewing the patient and outlining a treatment plan. The consistency of information provided to the family can also be threatened by the number of care providers involved in the care of a critically ill patient (Nelson & Meier, 1999). Lack of consensus around treatment goals and the provision of different information from different care providers can create distress for the family (Nelson, 2006) and the critical care nurse (Vanderspank-Wright et al., 2011). Previous research suggests that the medical team withdraw their involvement with the patient following a decision to withdraw life-sustaining treatment (Halcomb et al., 2004; Heland, 2006), indicating that the provision of care to the patient at the end of life is delivered by critical care nurses with limited input from the medical team.

In addition to the coordination of care by bedside critical care nurses and the health care team, the inclusion of palliative care experts and consults within critical care units can assist in facilitating the provision of optimal care for dying patients. In one study that compared the care of a retrospective cohort of patients who died in an ICU with a cohort of patients following the inclusion of palliative care consults and palliative care strategies when treatment goals change to comfort only, the length of time before the implementation of comfort care following identification of poor prognosis, the length of hospital stay and the cost of care was reduced (Campbell & Guzman, 2003). Although this study only considered patients with global cerebral ischemia and multi-organ system failure, it provides some support for the active implementation of an end-of-life care strategy to improve the quality of care for patients at the end of life in critical care. Other papers have described the use of training of intensive care nurses as end-of-life care opinion leaders to act as role models and promote changes in end-of-life care attitudes (Treece et al., 2006) and the inclusion of palliative care specialists on intensive care ward rounds to provide consultation and initiate end-of-life care conversations (Billings et al., 2006). No evaluation data of these interventions is provided in these papers (Billings et al., 2006; Treece et al., 2006).

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2.7

Summary

The domains of end-of-life care practice identified by Clarke et al. (2003) provides a framework for identifying and describing the practices of critical care nurses in the provision of care to patients at the end of life and their families. The key elements of the PARIHS framework—context, evidence and facilitation—provide an overarching framework to examine the factors that influence the provision of end-of-life care in critical care settings. Identification of current practice and the factors influencing the provision of end-of-life care provides a platform for practice development to improve the care that patients and their families receive and support nurses in the provision of this care. The current study aims to (1) identify the end-of-life care practices of Australian critical care nurses, (2) identify the factors influencing the provision of end-of-life care, and (3) identify the factors associated with specific end-of-life care practices of Australian critical care nurses. The next chapter provides a description of the methodology for the study.

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3 3.1

METHODOLOGY Introduction

A mixed methods approach was used for the current study. This chapter will define mixed methods research and discuss key strengths and criticisms of the mixed methods approach. A three-phase exploratory sequential mixed methods design will be introduced as the design selected for the current study. Ethical considerations pertaining to this study will then be discussed.

3.2

Mixed methods

The mixed methods approach has gained prominence as the third methodological approach, alongside the traditional qualitative and quantitative research approaches (Johnson & Onwuegbuzie, 2004; Johnson, Onwuegbuzie, & Turner, 2007). Proponents of the mixed methods approach do not consider it a replacement, but rather an approach that complements the traditional qualitative and quantitative approaches (Johnson & Onwuegbuzie, 2004). All three research approaches are considered valuable in answering different research questions in different circumstances and contexts (Johnson et al., 2007).

Following analysis of 19 definitions provided by leading scholars in mixed methods, Johnson et al. (2007) broadly defined mixed methods research as:

the type of research in which a researcher or team of researchers combined elements of qualitative and quantitative research approaches (eg. Use of qualitative and quantitative viewpoints, data collection, analysis, inference techniques) for the broad purposes of breadth and depth of understanding and corroboration. (p. 123)

As identified in Johnson et al.’s (2007) definition, a mixed methods study includes both qualitative and quantitative research strands that are combined or mixed in some 28

way. The rationale for using a mixed methods approach is that the strengths of both qualitative and quantitative research approaches complement each other and, when combined in a single research study, a comprehensive investigation of an area of interest can be undertaken (Creswell & Plano Clark, 2011). Specifically, in a mixed methods approach, both exploratory and interpretative research can be undertaken in a single study. This is advantageous in multidimensional complex areas of research interest, such as those that arise in nursing practice (Tashakkori & Teddlie, 2010).

Traditionally, qualitative research approaches acknowledge that multiple realities exist and explore phenomena of interest in depth using small non-probability samples, limiting the ability to generalise findings. In contrast, quantitative research approaches employ larger samples to test hypotheses and causal relationships, allowing generalisability of the findings. The mixed methods approach values both subjective and objective knowing. The transferability of knowledge generated is not limited by the methods used, but by consideration and appropriate use of the findings in relevant situations (Morgan, 2007). In addition, consideration of areas of convergence and divergence between the qualitative and quantitative findings can provide further insight into the area of research under investigation (Teddlie & Tashakkori, 2010).

While the quantitative research approach dominated much of the 20th century, during the so-called paradigm wars of the 1980s and 1990s, there was renewed attention to the place and value of the qualitative research approach to social science. Key proponents of the value of the qualitative research approach aligned their arguments with the philosophy of knowledge to provide credence and strength (see Morgan, 2007). Criticism of the mixed methods approach stems largely from the view that the philosophical assumptions underpinning the qualitative and quantitative research approaches are incompatible and, thus, it is inappropriate to mix qualitative and quantitative research methods.

Morgan (2007) states that the incompatibility of methods thesis ‘fails at every level except for debates about the nature of reality and truth’ (p. 64). The mixed methods scholarly community has rejected this incompatibility of methods thesis, instead arguing for methodological eclecticism (Teddlie & Tashakkori, 2010). Teddlie and 29

Tashakkori (2010) define methodological eclecticism as ‘selecting and synergistically integrating the most appropriate techniques from a myriad of qualitative, quantitative and mixed strategies to more thoroughly investigate a phenomenon of interest’ (p. 8). The research purpose or research questions are of central importance and the most appropriate methods are selected to achieve the research purpose or answer the research questions (Johnson & Onwuegbuzie, 2004), as opposed to a mono-methodological approach and adherence to methods traditionally associated with these approaches.

The mixed methods research approach requires the researcher to have knowledge and skills in both qualitative and quantitative research methods. Although this can present a challenge, those that engage in this work can become ‘methodological connoisseurs’ and have a broader range of knowledge and skills in research methods that can then be utilised to select and use the most appropriate methods in future research projects (Tashakkori & Teddlie, 2010, p. 275; Teddlie & Tashakkori, 2010).

Several authors have developed mixed methods research design typologies to assist researchers to select and combine the most appropriate methods to address their research purpose and questions (see Creswell & Plano Clark, 2011; Johnson & Onwuegbuzie, 2004). Mixed methods research designs vary in their timing, weighing and mixing of qualitative and quantitative approaches (Creswell & Plano Clark, 2011). Specifically, a three-phase exploratory sequential mixed methods design was utilised in this study (see Figure 3–1). In exploratory sequential designs, timing is sequential with one methodological strand undertaken, followed by another, and the strands are unequally weighed with one approach receiving a greater emphasis (Creswell & Plano Clark, 2011). In the current study, a qualitative approach was used first, followed by a quantitative approach, with a larger focus placed on the quantitative approach.

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Figure 3-1: Three-phase exploratory sequential mixed methods design (adapted from Creswell & Plano Clark, 2007) Phase 1

Phase 2

Phase 3

The mixing of the qualitative and quantitative research strands, termed the point of interface, in exploratory sequential mixed methods designs occurs when the two approaches are connected with the analysis of the findings from one strand informing the development of the next strand (Creswell & Plano Clark, 2011). The point of interface occurs in phase two of the current study, when the findings of phase one (the qualitative strand) inform the development of a survey instrument for use in phase three, the quantitative strand.

As previously identified, limited research has been undertaken to identify and describe the practices of critical care nurses providing end-of-life care to patients and their families and, therefore, a qualitative approach is appropriate for exploring this phenomenon. Phase one of this study involved individual interviews with a small convenience sample of critical care nurses from a single critical care setting to explore their end-of-life care experiences and practices. The point of interface between the qualitative and quantitative research strands in this study occurred in phase two of this study, when the findings of phase one, combined with a review of the literature, informed the development of the content of the survey instrument, for use in phase three of this study (the quantitative strand). In addition to developing the survey instrument, phase two of this study included a review of the survey instrument by an expert panel and a pilot test of the survey instrument with a convenience sample of critical care nurses. The findings of phase two provided preliminary evidence of the reliability and validity of the survey instrument. The survey instrument was then used in the larger quantitative phase of this study—phase 31

three—to conduct a national survey of critical care nurses to answer the three research questions posed in this study. Analysis of participant responses to the survey in phase three identified the frequency of practices undertaken in the provision of end-of-life care, critical care nurses’ level of agreement with factors influencing the provision of end-of-life care and the factors associated with specific end-of-life care practice areas.

3.3

Ethical considerations

This study used humans as participants. Care was required in the planning and conduct of the study to maximise the benefits of the study and minimise any potential risks (National Health and Medical Research Council [NHMRC], 2007b). Ethical considerations specific to this study include consent, anonymity and confidentiality, the pre-existing relationship between the pilot test participants and the associate supervisor, security of data and dissemination of findings. Potential participants in this study were informed about the requirements of participation, expected benefits and risks. Participants in phase one had an opportunity to ask questions prior to signing a consent form to indicate that they were informed about the study and had voluntarily agreed to participate (NHMRC, 2007b). In phases two and three, submission of the completed survey implied consent.

Participants were assured anonymity and confidentiality. Consistent with NHMRC guidelines (2007b), identifying information within the data was deleted from the data set. The survey maintained the participants’ anonymity by not requesting their name or contact details. Some demographic information was collected and, although unlikely, this could result in a response to a survey in which a participant may be individually identified (NHMRC, 2007b). If a response could potentially identify a participant, this information was withheld from publication of the results of this study. Pilot test participants in phase two of this study were recruited from a postgraduate nursing subject at an Australian university. Although the researcher does not have an existing relationship with the participants, the associate supervisor of this PhD study is the course convener for postgraduate nursing students enrolled in 32

this subject. Participant confidentiality was maintained by restricting access to data sets that identify participants and their responses to the researcher.

Research data is stored in a locked filing cabinet and will be retained for a period of five years following submission of the results for publication (NHMRC, 2007a). Electronic files are stored on a password-protected computer. Stored data is periodically checked to ensure integrity and access to data is limited to the researcher and supervisory team. The findings of this study have and will be disseminated to the profession through conference presentations and publications in peer-reviewed nursing and critical care journals. In addition, some participants voluntarily provided contact details to the researcher and requested copies of findings as they are published. Personal emails will be sent to these participants as requested.

Ethical approval to undertake this study was obtained from the Queensland University of Technology (QUT) Human Research Ethics Committee (see Appendices 13.1 and 13.2). In addition, ethical approval from the ACT Health Human Research Ethics Committee was obtained for phase one of this study (see Appendix 13.3) and the ACCCN agreed to support phase three of this study. A copy of an email from the ACCCN secretary indicating support for this study is attached (see Appendix 13.4).

3.4

Summary

A mixed methods approach using a three-phase exploratory sequential design was utilised in this study. This chapter has provided a broad overview of this methodological approach and the ethical considerations relevant to the current study. Subsequent chapters address the methods used in each phase of this mixed methods study.

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4 4.1

PHASE ONE METHODS Introduction

The first phase of this mixed methods study employed a qualitative research approach. The research question guiding this phase of the current study was: What is the experience of end-of-life care as described by critical care nurses? In answering this question, the experiences and practices of critical care nurses in the provision of end-of-life care were identified. As noted in the previous chapter, the purpose of this phase was to explore dimensions of critical care nurses’ end-of-life care experiences and practices, to assist with development of content for a survey instrument to be used in later stages of the study. This chapter will outline the methods used in phase one of the current study including the study setting, participants, method of data collection, procedure and data management and analysis.

4.2

The setting

A 500-bed tertiary level referral centre and teaching hospital, providing health care services to a population of approximately 500,000 in one Australian city and surrounding region, provided the setting for phase one of this study. This hospital has a 22-bed general ICU, providing intensive care services to medical and surgical patients (Drennan et al., 2010). The unit includes two cardiothoracic surgery beds and provides intensive care services to paediatric patients. Patients requiring high dependency services are cared for in the unit, while coronary care services are provided in a separate unit of the hospital.

The Joint Faculty of Intensive Care Medicine (JFICM, 2003) provides definitions of standards required by ICUs for accreditation. Three levels of intensive care services are identified by these standards with level three facilities providing the highest level of critical care ‘including complex multisystem life support for an indefinite period’ (JFICM, 2003, p. 1). Patient care in a level three ICU is managed by an intensive care specialist and level three units contribute to education and research (JFICM,

34

2003). The ICU that provided the setting for phase one of the current study was classified as a tertiary level three intensive care facility.

4.3

Participants

In January 2009, the ICU that provided the setting for phase one of this study employed approximately 60 full-time equivalent (FTE) registered nurses (J. Rochow, personal communication, November 20, 2009). The unit employs both generalist registered nurses, including new graduate nurses, and registered nurses who have completed postgraduate education in intensive care or critical care nursing. There were no enrolled nurses employed in a clinical position within the unit. This phase of the study aimed to include experiences of both junior and senior nurses. During recruitment of potential participants, it was acknowledged that the researcher was interested in ascertaining the experiences and practices of both junior and senior nurses. A purposive sampling technique was used to select a small sample of critical care nurses employed in the ICU in the study setting to participate in an individual semi-structured interview to discuss their experiences of providing end-of-life care in the ICU.

4.4

Method of data collection

A semi-structured interview format was chosen to provide junior and senior nursing staff privacy to openly share their personal experiences of providing end-of-life care to patients in the ICU. Semi-structured interviews allow interviewees the opportunity to freely share their experiences, providing rich in-depth accounts (Fontana & Frey, 2005; Silverman, 2006). Based on the assumption that participants will provide an unbiased and truthful account (Fontana & Frey, 2005) of their end-of-life care experiences, semi-structured interviews allow participants to talk freely and deeply about their personal experiences and practices. Death and dying is an emotive topic, and this topic can be sensitive for participants sharing their experiences and discussing their practices. 35

4.5

Procedure

Participants were recruited via a presentation at a nursing staff meeting. The presentation provided information about the study and the requirements of participation. At the end of the presentation, seven registered nurses placed their name and contact details on an expression of interest form. Three of these registered nurses participated in an individual interview. A bulletin board advertisement (see Appendix 13.5) was posted in the staff tearoom, the staff communication book and on the research noticeboard in the main corridor of the unit. After seeing these advertisements, two registered nurses contacted the researcher to express interest in participating in the research study and were subsequently interviewed. A study information sheet was also distributed to potential participants. The information sheet outlined the purpose of the study, the potential benefits of the study to the contribution of nursing knowledge of end-of-life care in critical care units and the requirements of participation (see Appendix 13.6).

Qualitative methods typically employ small samples of participants, for the purpose of obtaining in-depth exploration of a phenomenon of interest. After five individual interviews, a number of key themes had emerged related to end-of-life experiences and practices of intensive care nurses with varying levels of experience and qualifications. While no claim is made that data saturation occurred with this small sample, the insight gained from the interviews was consistent with themes identified from the literature review relating to these issues. Given this convergence, the data generated from the five participants was considered sufficient for the purpose of phase one of the current study.

Fontana and Frey (2005) summarise elements of interviewing that interviewers must consider, including how to present themselves and establish rapport and trust with the interviewees. In this study, each interview began with the researcher thanking the participant for agreeing to be interviewed and identifying that the interview was being undertaken as a component of a PhD research study. The study was briefly described, including its aims and potential contribution to nursing practice and patient care. The participant was then asked to briefly summarise his or her nursing education and employment history. This provided the researcher with information 36

regarding the participant’s nursing background and acted as an icebreaker to encourage the participant to feel comfortable and talk openly. The participant was then asked to describe a recent or significant experience of caring for an adult patient at the end of life following a decision to withdraw or withhold life-sustaining treatment. The role of the researcher as the interviewer was to actively listen to the participant’s narrative and clarify or explore participant responses as required. The interviewer is considered an active participant in the interview, providing verbal cues such as mm, oh, huh and non-verbal nodding, smiling and frowning to encourage the participant to talk and expand on his or her experiences and stories (Silverman, 2006). When necessary, additional open-ended questions were asked of the participant, such as: What do you think is important in caring for patients at the end of life? What assists you to provide end-of-life care? What barriers or difficulties have you experienced when providing end-of-life care?

Interviews were conducted in a room in the ICU that ensured privacy and was free from interruptions. In one instance, an interview was conducted in the home of a participant at the participant’s request. Approval from the director of nursing was provided to allow participants to attend the interview during work time. Interviews ranged in length from 13 to 72 minutes (mean 41 minutes). A digital voice recorder was used to record each interview to enable a verbatim transcription of the discussion to be produced and permit the researcher to return to the discussion at a later time.

4.6

Data management and analysis

Immediately following each interview, the digital voice recording was sent to a professional transcription agency for conversion into a word document. The transcription from each interview was read while concurrently listening to the digital record of the interview to first verify the accuracy and reliability of the transcription as a written record and, secondly, to permit the researcher to return to the discussion and recapture the intent of the written text conveyed through the participant’s verbal expression (Silverman, 2006). Emphasis or intonations as expressed by the participant were added to the transcription if they were considered to provide 37

important contextual data to the written record. Each transcript was reread until the researcher felt familiar with the text.

In their handbook of qualitative data analysis, Miles and Huberman (1994) identify data analysis as consisting of three concurrent activities: data reduction, data display and conclusion drawing/verification. In the current study, data reduction proceeded using a manual inductive coding approach, as described by Miles and Huberman (1994). Each transcript was reread and labels of one to two words were placed in the margin of the transcript to identify ideas and/or concepts of interest. Margin labels were reviewed and segments of text containing similar ideas and concepts were copied and pasted together into a new Word document to create a data display (Miles & Huberman, 1994). Each group was named using one to two words that capture the essence of the content. These groups formed the preliminary categories.

The data display of content of each preliminary category was reviewed to ensure best fit of content (Miles & Huberman, 1994). Groups containing similar content were combined to create major categories and, when appropriate, subcategories were identified within the major categories. The content of each category was then reviewed again and key quotes that exemplify the category were identified.

Check-coding, as described by Miles and Huberman (1994), during the initial coding of the transcripts was undertaken. Three of the interview transcripts were independently read and coded by the researcher and supervisory team. Inter-coder agreement was achieved between the researcher and study supervisors following comparison, discussion and debate of the codes. During data analysis, the key research questions and aims of phase one of the current study were reviewed to assist in conclusion drawing. The researcher interpreted the findings by reflecting upon the data and categories identified in relation to the study aims and research questions. Claims about the data were made and supported by exemplars and quotations. In addition, a data display consisting of a matrix comparing the key domains of end-oflife care practice and the factors influencing the provision of end-of-life care identified in the literature review with the findings from the phase one interviews was created. The findings of phase one were presented at a nursing in-service in the study setting to enable further verification of the study findings. Nurses present 38

during the in-service agreed that the findings generally reflected their own experiences and practices of end-of-life care, providing further confirmation of the categories developed during data analysis.

4.7

Summary

The purpose of phase one of this study was to obtain insight into the end-of-life care experiences and practices of critical care nurses. Phase one utilised a qualitative approach to interview a small convenience sample of critical care nurses from a single ICU to achieve this purpose. The findings of the analysis of interview data are presented in the next chapter.

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5 5.1

PHASE ONE FINDINGS Introduction

This chapter will briefly describe the characteristics of the registered nurses who participated in phase one of the current study, completing an individual interview with the researcher. The categories and subcategories identified from the interview data will then be described. Excerpts from the interview transcripts are included as exemplars to support the categories and subcategories identified.

5.2

Participant characteristics

Five female registered nurses participated in phase one of the current study. The participants included both senior and junior members of nursing staff. Table 5–1 outlines the number of years that each participant had been a registered nurse and the number of years that they had worked in an ICU. Three participants had completed formal postgraduate qualifications (either graduate certificate or graduate diploma) in intensive or critical care nursing.

Table 5-1: Phase one participant characteristics Years as a

Years as an ICU

Postgraduate

nurse

nurse

qualifications

1

5

3

No

2

25

15

Yes

3

6

3

Yes

4

29

22

Yes

5

3

2

No

Participant

Note. ICU = intensive care unit.

40

Participants in this phase of the current study were asked to discuss their experiences of caring for a patient after a decision to withdraw or withhold treatment had been made. It is acknowledged that practice is complex and multidimensional in nature; however, due to constraints of the spoken and written word, this account of care of a patient at the end of life, at times, appears linear. In addition, excerpts used to provide evidence of a category or subcategory may also provide evidence of other categories or subcategories. This is reflective of the interrelationships that exist between the categories and subcategories developed from the interview data. Three major categories were identified: Beliefs about end-of-life care, end-of-life care in the intensive care context and facilitating end-of-life care (see Table 5–2).

Table 5-2: Categories and subcategories developed from phase one interview data Category

Subcategory

Beliefs about end-of-life care

Value of participating in end-of-life care Complexity of end-of-life care

End-of-life care in the intensive care

Organisational support

context

Modifying the bedside environment

Facilitating end-of-life care

Uncertainty and ambiguity Emotional intensity Providing comfort care Humanising the patient Facilitating the family’s experience

5.3

Category: Beliefs about end-of-life care

During the interviews, participants shared their personal beliefs about death and dying and the provision of end-of-life care in the intensive care setting. In particular, participants in phase one of this study expressed their beliefs about the value of participating in end-of-life care and the complexity of end-of-life care. Variation in

41

critical care nurses’ personal beliefs about end-of-life care may influence the care that is provided to patients and their families.

5.3.1

Value of participating in end-of-life care

The value of participating in end-of-life care was emphasised by participants. Participants used terms such as privilege and honour to describe how they felt about the opportunity to care for patients at the end of life and their families.

I think, depending on how you look at it, I guess it’s a little bit of a—it’s kind of an honour to share that most intimate moment in someone’s life. (Participant 5)

I’m very aware of the intimate position that we have in people’s lives in these big, big moments. (Participant 2)

Some participants felt that the value of participating in end-of-life care was not always recognised by their nursing colleagues. The intensive care setting is dominated by a curative culture driven by a medical model of practice. The aim of intensive care is to save lives and loss of life may be viewed as a failure. The curative culture in addition to the nurse’s beliefs and comfort with spirituality and death can pose as barriers to engaging in end-of-life care, influencing the care provided to the patient and the patient’s family.

I think there’s a very strong part of the culture here in ICU that death is failure. Nurses don’t seem to like looking after dying people, not only perhaps because they don’t quite know how they feel about death themselves, but I think also because it’s considered that you don’t need skills to look after a dying person. I think that it’s quite the contrary. (Participant 2)

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5.3.2

Complexity of end-of-life care

Participants in phase one of the current study believed that the provision of end-oflife care is an advanced practice skill. However, participants did not elaborate in detail about what was involved in the complexity of caring for a patient at the end of life. Aspects of end-of-life care practice that were identified included interpersonal skills, assessment skills and knowledge of symptom management.

I’ve seen it allocated to the junior nurses and it’s just, oh well, you just extubate and then start the morphine or, and it is so much more than that, so much more. (Participant 1)

Generally, participants in this study considered end-of-life care an advanced practice skill and that the allocation of nurses inexperienced in the provision of end-of-life care posed a barrier to the care provided. However, confidence and skill in the provision of end-of-life care may be developed through experience in providing this care.

I think that looking after a dying patient is an advanced practice skill. Even just last week, we had some—quite a few deaths and some junior people who, clearly, I could see, were struggling with—one, I mean, I guess with the care. How to deal with the family and how to, I guess, even deal with it herself. (Participant 4)

I think it does take time and skill and years to look after people who are dying and to be comfortable. (Participant 4)

Some participants felt that the complexity of end-of-life care was not always recognised by their nursing colleagues. Examples of inappropriate allocation of junior nursing staff and higher nurse-to-patient ratios were cited as evidence of both the lack of value and lack of understanding of the complexity involved in end-of-life care. 43

I think what frequently happens is that the more junior nurses are allocated the patients that we’re withdrawing on, which I think is completely, I guess unfair to the nurse. But also, I guess it also impacts the family. (Participant 1)

In recent times I was given two patients who weren’t expected to survive. They were both on ventilators . . . I had two students as well. I had two patients on ventilators, which is normally unheard of in this unit. I also had a student to mentor with each of these patients. I thought that was pretty overt disregard for the complexity that is involved in end-of-life care . . . So that was really evident to me that withdrawing and dying was seen as something very simple. It’s not simple. It’s time intensive. There’s observation . . . I’m collecting information all the time. I’m being vigilant all the time. (Participant 2)

Variation in the personal beliefs held by individual nurses about the value of end-oflife care and the complexity of this area of practice are factors that may influence intensive care nurses’ approach to end-of-life care and the care provided to patients and their families.

5.4

Category: End-of-life care in the intensive care context

The ICU is a unique practice setting and the factors influencing care provided in this context may differ to those in other contexts such as an acute ward or oncology unit. Participants reported a practice context of limited organisational supports relating to end-of-life care issues. Interventions aimed at modifying the bedside environment can assist nurses in creating a context within the intensive care setting that supports the provision of care for patients at the end of life and their families.

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5.4.1

Organisational support

Some participants in this study perceived a lack of guidance from their colleagues and the organisation in regard to end-of-life care. Following the decision to withdraw treatment, the medical team was perceived to withdraw from participating in the care of the patient. Factors that may influence the disengagement of medical staff include the curative culture, perception of death as failure and the personal comfort of medical staff with death and dying.

Speaking to family in those circumstances and how to—basically, when a family says we’re withdrawing the tubes out, the doctors don’t even go in except to pronounce the death. There would be nothing wrong with them popping in just to see how the family was going or—you know. I think to show the ongoing care of doctors, as well as nurses. Yeah. I think that might be fear as well, might be time constraints. Yeah. (Participant 4)

We don’t tend to have doctor input after the decision to withdraw care, though, and maybe that’s something that we could look at as well, to do better. Generally, after the family meeting, the decision to withdraw, the family only deals with the nursing staff who, if they’re junior, can’t explain what might be happening and why certain symptoms might be occurring or don’t know that certain symptoms can be treated and your antimucolytics for rattly chest and stuff is obviously something that I always advocate for. (Participant 1)

The variation in perceptions of the value and complexity of end-of-life care was also evident in the guidance provided by senior nursing staff. Some participants felt that the guidance provided by nursing team leaders to junior nurses was superficial and inadequate to address the complexity of care required by a patient at the end of life.

I’ve seen it allocated to the junior nurses and it’s just, oh well, you just extubate and then start the morphine or, and it is so much more than that, so much more. (Participant 1) 45

Nursing care should be individualised to the needs and personal preferences of the patient, and care at the end of life is no different. Although some participants in this study stated that care should be individualised, they also felt that policies and guidelines about end-of-life care may assist staff in the provision of this care by helping them to think about various aspects of care that may be required by the patients and their families. Examples provided by participants included contacting spiritual advisors and social workers and asking about the patient’s pets. No policies or guidelines were available in the unit to guide nurses providing end-of-life care.

5.4.2

Modifying the bedside environment

As previously discussed, end-of-life care was highly valued by participants in this study, and they wanted to create a positive experience for the patient and family. All participants described interventions undertaken after a decision had been made to withdraw or withhold treatment to modify the bedside environment and create a good environment for the patient and the patient’s family to experience end-of-life care. Participants attempted to create an intimate and peaceful setting that supported the provision of end-of-life care by ‘removing the intensive out of intensive care’ (Participant 2) through interventions to provide privacy, remove clinical equipment and create a homely environment.

In the transition to end-of-life care, participants indicated that patients were transferred to a single room within the ICU if they were not already in one. Patient care in the ICU that provided the study setting for phase one of this research study is provided in open plan bays, with four beds in each bay, or in one of four single rooms. Participants reported that admission to a single room provided space and privacy for the patient and his or her family, allowed more visitors at the bedside and permitted visitation of family outside regular visiting hours. The use of single and family rooms was also perceived to be beneficial to other patients and families, to lessen their exposure to the dying patient and the patient’s family.

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Normally people go to a private room: one, to allow more visitors; secondly, it’s just a quieter environment. Also, for other patients as well, to see people upset and crying is very disturbing for the other relatives because they think there but for the grace of god go I. They’re given a quiet room. (Participant 2)

One participant identified that single rooms are not always available and expressed frustration at not being able to provide the family with adequate privacy.

I felt like I couldn't give them the privacy that they deserved because I was standing behind those magical soundproof curtains. It’s not the same; it’s not the same. (Participant 5)

Another factor that facilitated a positive experience of end-of-life care was the availability of a private room for use by the family of the patient at the end of life. Participants in this study identified that their ICU has a designated room, separate to the intensive care visitor’s waiting room, which is used by families of dying patients. This room allows family members to remain within the ICU, close to their relative, and to congregate separately to the other visitors to intensive care.

I think the family room is fantastic. It’s a little bit of privacy that you’re not in the visitors room crying or—you know. They’ve got a loo there, so you don’t have to step out to come in to use the loo, that sort of thing. I think, overall, they’re really good things . . . I think also our kitchen provides us with sandwiches and drinks. So I think we can—I think we give the family a good environment in which to experience death. (Participant 4)

Participants reported other interventions undertaken to modify the bedside environment, such as shifting monitoring equipment out of view of the family and removing clinical equipment that was not in use, including ventilators, infusion pumps and intravenous lines. Participants felt that monitoring equipment was 47

distracting for the family as they spend their time watching the monitor rather than looking at and talking to their relative.

Generally, I mean I tend to ask the family members what they want but we can kind of dim the lights and have chairs all around and stuff but generally I’ll turn the screen so that, if need be, I can see it from the other room. If anyone in particular wants to be able to see it, then they can. I guess we do minimise the equipment, the monitoring equipment, to sort of clear, clear out the room as best we can to fit as many people in as we can and I guess make it less clinical. (Participant 1)

I think that’s really important and getting rid of the monitoring is a big thing for me because I don’t think that, I don’t want their last moments with their loved one to be watching a screen like you would on an emergency show where it goes blip, blip, beep. They sort of expect it and they’ll just watch the monitor and I think that’s not fair. You shouldn’t be watching a monitor; you should be watching your loved one and talking to your loved one and I think we’re depriving them of that if we keep all this other stuff around. (Participant 5)

Removing clinical equipment combined with modifications such as adjusting the lighting, changing the bed linen, putting up photographs and playing music assisted in creating an atmosphere that was less clinical and more homely and comfortable for the patient and family. The staff on the unit had developed a resource kit containing equipment such as linen, lamps and cushions for use when caring for a patient at the end of life. The kit contained coloured linen and matching quilts that was used to replace hospital linen. Participants stated that they turned off or dimmed the lights in the room and used bedside lamps to create a peaceful atmosphere.

Get rid of the sterile environment, change that perception, it looks like they’re relaxed, more like they would be at home. (Participant 5)

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In that room we’ve got lamps to create an ambience of quietness and intimacy, as much as you can in the clinical confines of an ICU unit. We use linen. We try to make it as un-clinical as possible. (Participant 2)

Put up pictures, put up music, get their own blankets, get whatever, and make it a personal experience, rather than the stark white and tippy-toe around. (Participant 4)

End-of-life care was highly valued by participants in this study and they wanted to create a positive experience for the patient and family. The practice context of intensive care is a busy and noisy environment; however, an intimate, peaceful setting in which to experience end-of-life care and death could be achieved by transferring the patient to a private room and modifying the environment to create a homely feel. The removal of monitoring and equipment encouraged the family to direct their attention to the patient and change the focus of care to providing comfort at the end of life.

5.5

Category: Facilitating end-of-life care

The category of facilitating end-of-life care incorporated five subcategories. The subcategories uncertainty and ambiguity and emotional intensity captured nurses’ perceptions of the factors influencing the provision of end-of-life care and the support available to nurses. The subcategories comfort care, humanising the patient and facilitating the family’s experience captured the practices of critical care nurses in the provision of care to patients at the end of life and their families.

5.5.1

Uncertainty and ambiguity

Some participants alluded to the uncertainty and ambiguity surrounding patient prognosis and end-of-life decision making in this setting. This uncertainty and 49

ambiguity appeared to continue even after decisions had been made to withdraw treatment. In a practical sense, participants reported that this would manifest in waiting for family members to arrive at the patient’s bedside, resulting in a delay between when a decision was made to withdraw treatment and when this actually occurred.

We can have a dying patient here for two days because—well, first of all, well the niece needs to come and she won’t be here for 12 hours . . . then the second cousin, four times removed . . . I think a lot of times we give the family a lot of—maybe too much time to—before withdrawal of treatment . . . I think it’s disrespectful to the person who’s dying, to lie there, gasping sometimes, because they’re waiting for someone to come. (Participant 4)

When a clinical decision has been made in relation to withdrawing and withholding treatment, the patient’s family may not always be ready for this decision to occur. The family may require time to accept the change in treatment plan to comfort only and the pending loss of their loved one. Several factors may contribute to family readiness, including the uncertainty and ambiguity surrounding the patient’s prognosis and treatment in intensive care, the overwhelming experience of having a family member in intensive care and the experience of grief and loss. Nurses’ role in facilitating end-of-life care may include ascertaining family readiness and providing adequate preparation and support for family members of patients at the end of life.

5.5.2

Emotional intensity

In the critical care setting, the difficulty in determining patient prognosis and the availability of advanced treatment modalities that can maintain life can make decisions regarding the continuation or termination of treatment difficult. Participants were informed that the focus of this study was the experience of caring for a patient at the end of life after a decision had been made to withdraw or withhold life-sustaining treatment. Therefore, the data does not tend to capture the uncertainty 50

and ambiguity that surrounds this area of practice. However, participants alluded to some of the challenges that they are faced with when they spoke of avoiding sending mixed messages to the families of patients at the end of life and their participation in family meetings to discuss patient prognosis and decisions to shift focus of treatment to comfort only.

Intensive care is a high-intensity work environment. Caring for patients with traumatic injuries and critical illness on a daily basis exposes nurses to grief and human suffering not experienced in other workplaces. One participant highlighted this situation, stating:

As a junior person, in particular, you don’t have anyone to talk to because your nursing friends that you would normally confide in don’t understand. Your family doesn’t understand, your partner doesn’t understand, they don’t get it. You say, I’ve had a really horrible day. Oh, mine too. Column A wouldn’t add up to column B and that made column C all out of whack. No, someone’s died. No-one gets it except for the people that are here. (Participant 5)

With everyday exposure to critically ill patients, nurses may be expected to be resilient to the experience and emotional aspects of this work. One senior member of nursing staff described how senior staff check in with each other after caring for a patient at the end of life. This exemplar suggests that, although this support is offered, it is expected that support would not be required.

Yep. But a lot of times it’s just, are you alright? They go, yep. Because a lot of times we are, because we’ve done it so many times. Sometimes it isn’t. (Participant 4)

In addition, the intensity of nursing work in intensive care may become second nature to senior staff and they may not recall how overwhelming the experience may be for junior staff. Some participants identified that as a nurse in intensive care, you 51

were expected to cope with death and dying. These participants felt that the prevailing culture in intensive care made it difficult, particularly for junior staff, to ask for help or seek emotional support during or after the provision of end-of-life care to a patient and family.

It’s not okay here to say that you’re not quite coping. You are looked down upon if you say I’m not really coping, I’m kind of struggling with this. I had a really emotional day. This is hard. We don’t have that support. (Participant 5)

One participant also expressed concern that staff do not have a say in whom they are allocated to care for and this may lead to situations that are emotionally confronting for the nurse. This participant also discussed the lack of down time between the provision of end-of-life care and the admission of another patient during the same shift. These situations may occur because end-of-life care is not considered important and/or the complexity of end-of-life care is not recognised by some. These situations may not only influence the care provided, as identified by Participant 1, but may also affect nurse coping and stress levels.

So if they’re not comfortable regarding a specific issue of dying or it may be what the patient may be dying of, maybe we should reconsider allocation. That’s a thing at the moment, we’re pre-allocated, we don’t have a say in who we nurse and I think that may impact on care. (Participant 1)

I see a need for debrief for nurses, particularly after, and one of my examples is coming on shift, having a really critically unwell patient and they die as soon as you’ve sort of sorted out things with family, attended to paperwork and stuff, then you can get the next post-op off the ranks sort of thing. I don’t think we provide adequately for that changeover for nurses. No-one sort of comes up to you and goes, gee, was there anything in that that struck a chord, triggered something, you know, whether it was, if I had a previous experience whether in nursing or in my personal life. You don’t really get asked those questions of, how are you going after that this morning. I can 52

certainly see that there’s a need for debrief or even just a down time when a person can change gears between patient A and patient B. (Participant 1)

The frequency of critical incidents in intensive care may mean that debriefing sessions are overlooked as nurses continue to engage in the busyness of the work environment. Participants in this study identified that more support for intensive care nurses providing end-of-life care was needed. It was acknowledged that external support services existed but these were not accessed. Staff identified that they often rely on their collegial network for support and that this form of support may not be available for junior staff who may not have established these networks.

Being supported, I guess. If you knew—even if you don’t have to take them up on it—if you knew that there was support there, it would be better. (Participant 5)

Just having support, junior nurses being supported in the role of doing endof-life care instead of expected just to be able to cope. (Participant 1)

I think us oldies just use each other, the way we’re used to, because we never had anything like that. I guess the hospital does make things available through whatever it is [external employee support programme]. But people again are reluctant to use services like that. (Participant 4)

Intensive care is a unique practice context involving high-intensity and emotive work. Uncertainty and ambiguity related to patient prognosis, the trajectory of critical illness and treatment decisions surround practice in intensive care. Nurses in phase one of this study described a culture of poor organisational and emotional support. Lack of emotional support and inadequate guidance in end-of-life care practice may influence intensive care nurses’ end-of-life care experiences, stress and coping and may compromise the quality of care afforded to patients at the end of life and their families.

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5.5.3

Comfort care

As previously discussed, participants viewed end-of-life care as an advanced practice skill and felt that the complexity of this area of practice was not always recognised by their colleagues. End-of-life care in the ICU consisted of more than just the removal of treatment.

It’s not just withdrawing; it’s actually providing comfort. (Participant 2)

Just because they’re dying, doesn’t—we might be withdrawing treatment, but we don’t withdraw care. (Participant 4)

One participant defined comfort care provided at the end of life by offering the following explanation:

We had moved her to comfort care. If comfort is the criteria, then you’re looking at emotional, physical, psychological comfort, not only of her but also of the extended family. The significant relationships are really important in terms of end-of-life care and creating comfort so that the person dies with as much ease and release as possible. (Participant 2)

A focus on caring for the patient’s family and facilitating the family’s experience of end-of-life care dominated participants’ narratives of their end-of-life care experiences in intensive care. The actual nursing interventions undertaken in the provision of comfort care to the patient were not directly discussed by participants in detail. Often, participants revealed tasks undertaken in the care of the patient in the context of highlighting some other aspect of their end-of-life care practice or experience. For example, the task of bathing a patient was mentioned by one participant in the context of allowing family to be involved in the care of the patient. The actual tasks undertaken in the provision of comfort care may be taken-forgranted aspects of participants’ practice. Additionally, participants may have felt that

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they did not need to describe these details of their practice to the researcher due to the researcher’s experience and knowledge of intensive care work.

Tasks undertaken in the provision of comfort care that were mentioned in the interviews but not described in detail included bathing, hair care, mouth care, pressure area care, spiritual care, and the administration of analgesics, sedatives and antimucolytics.

5.5.4

Humanising the patient

Participants in this study described interventions to humanise the patient and assist in shifting the focus of care to comfort only. Interventions to humanise the patient included removing equipment, personal cares and talking about the patient.

When caring for patients at the end of life, participants spoke about humanising the patients to make them look more like themselves. Removing monitoring and equipment or covering up equipment that could not be removed and providing personal cares such as combing the patient’s hair assisted in de-medicalising the patient and shifting the family’s focus to the patient as a person and comfort-only care.

Try and make them comfortable. I don’t know. I think, in some ways, it can be very intuitive. I just think what I would like or what humanness, human beings would like, and try and do that. (Participant 4)

Make them look a bit more like themselves, get rid of as many lines as you can. If stuff has to be in, it has to be in. Cover that arm that’s covered in stuff. (Participant 5)

Get rid of all the extraneous monitoring equipment, to leave it at the bedside in the main ward. So we go into the single room with absolutely minimal stuff. We don’t need . . . Often we just have morphine and midaz running. 55

That’s all we need: just one pump, just one ventilator. Sometimes we just put them on a bag to enter the single room so that they’re just breathing on room air so that . . . There’s a medical reason for this in my practice. That is to allow CO 2 to build up so that they’re almost CO 2 narcotised and sedated almost naturally so that they don’t experience too much air hunger if they’re not actually brain dead. So there are things that I do. When I get into the room I change the settings on the ventilator to be as normal as possible. If they’re on high amounts of PEEP or high amounts of pressure support, I sort of crank it down incrementally so that by the time we actually get to extubation . . . I don’t want the relatives to experience distress by seeing air hunger. (Participant 2)

Patients are admitted to ICUs following trauma or an acute phase of illness, often presenting with an altered level of consciousness. This poses a barrier to establishing a relationship between the patient and the intensive care nurses. Nurses also shifted their focus to the patient as a person by asking the family about the patient to enable them to ‘get to know’ the patient. The process of the nurse ‘getting to know’ the patient also provided an opportunity for the family to talk about their relative and reflect on their lives together.

Yeah. I’ve had two where people just—I think they—not all, but a lot of them do want to tell you what the person who’s lying in the bed. You know, we had one lady who—I was just sitting in the empty room. She was sitting with her dad. Often she physically came and grabbed me and pulled me beside her dad’s bed. She said let me tell you about my dad. She said, oh, he had a fantastic voice. I said, oh, he could sing. She just laughed and said, no, he just had a nice voice. She just wanted to tell people about—and sometimes I just ask too, depending on if you read the mood right. You know, what was he like? Or blah-blah-blah. Something like that, just to try and make it that they can speak about the person who’s dying or indeed has already died, about what they were, about their life, that kind of stuff. (Participant 4)

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I think you do find people wanting to share stories and that sort of stuff. So I think allowing them to do that and to let us, the stranger, sort of know them. Or I can just say I don’t know your dad, because he’s always just been attached to tubes. So what was he like? There’s ways into those conversations if it’s appropriate. (Participant 4)

Through interventions to humanise the patient, both families and nurses shift their focus to the patient as a person and comfort-only care. These interventions create a context conducive to the provision of end-of-life care in the intensive care setting, and the value of participating in this moment in a person’s life for nurses is evident.

5.5.5

Facilitating the family’s experience

Care of the dying patient’s family was identified as a focus of care for participants in phase one of this study, and a significant proportion of participant dialogue in each interview was dedicated to this care. The findings of this study identified facilitating the family’s experience during the provision of end-of-life care as an important nursing role.

Participants in this study acknowledged the need to provide options and respect choices of the dying patient’s family. Providing options and respecting choices were primarily discussed in relation to the patient’s family. The limited or absent discussion of the patient’s wishes by participants in the interviews may be in response to the inability to interact or develop a relationship with patients in intensive care due to their altered level of consciousness. In the absence of an advance directive, the family may be able to indicate what they believe the patient would want in the given circumstances. The intensive care nurse has the opportunity to develop a relationship with the family and discuss possible options and choices.

Nurses are able to facilitate a family’s experience of end-of-life care by providing options and respecting choices, enabling family involvement and participation. 57

Participants spoke of their ability to influence the family’s experience of end-of-life care. Some participants stated that they asked the family ‘what do you want?’ to try to ascertain the type of atmosphere the family wanted to create, the support required from the nurse and the degree to which family wanted to be involved in providing end-of-life care to their relative.

So I think it is personal, I think we should ask people what do you want? This is your hell. You’re going through it. How do you want to go through it? (Participant 4)

So I helped the family, before the withdrawal, helped them. One of them wanted to bathe, help bathe, so we helped bathe and do all the general care of their loved one. (Participant 3)

One participant described that a rapport with the family was needed to assist the nurse to facilitate family experience.

It’s really hard looking after someone if you don’t have a rapport with the family. I generally can create a rapport pretty well so I haven’t had too many experiences where I haven’t but if the family’s really closed and you just feel really awkward, even going in there to do anything at all. If the infusion pump is beeping or something you feel really uncomfortable going in there and I think that would then reflect to them. So I just find it such—it makes it emotionally harder if you don’t have a rapport. In a way I know that sounds strange but I sort of think, what are they getting from me, like what sort of a vibe are they getting from me if I’m feeling uncomfortable in a situation. Like that’s not fair on them either. (Participant 5)

All participants acknowledged their role in explaining and providing information to the patients and their families. Participants in this study identified that they explained what was happening to the patients and their families, answered questions posed by family members and provided information. 58

You don’t have to really say much to them when they’re dying, when they’ve got their loved one dying. Explaining when things happened. Just, I’d switched the monitoring around so the family weren’t fixated on the monitoring but I did say when their heart had stopped and things like that. I explained, they said there was some beeping noises and I explained that was normal and it could continue for a little while. So it was more just reassurance and information that I gave the family at that time, without information overloading them as well. (Participant 3)

It’s very satisfying to be able to give people information . . . Even though they’re dying, they’re still not dead. (Participant 2)

The provision of end-of-life care can be an emotionally confronting area of practice. It is a second-nature aspect of nursing practice to explain and provide information, and this is no different when caring for a patient at the end of life. Although the actual content of information and explanations provided could not be ascertained from the interview data, explaining and providing information was considered a safe area as the information needs and questions from family were similar. This was a practical and comfortable area of practice for both senior and junior staff. In response to her role in explaining and providing information about clinical equipment and treatment interventions, one participant said:

I felt quite comfortable doing that, that was something I could do. Right, okay, comfort zone again, I can explain this stuff, that’s cool. (Participant 5)

Facilitating end-of-life care included explaining and providing information to the family. The findings suggest that explaining and providing information was a comfortable area of practice for all participants in the often confronting and emotional work of providing end-of-life care.

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All participants described being there for the family through their presence with the patient and family according to the family’s preference and the nurse’s comfort with being there. The environment of the intensive care setting and the experience of having a relative at the end of life may be overwhelming for family members. Nursing presence or being there was integral to facilitating family experience as they support family members to be with their relative at the end of life. This support included a physical presence by the nurse at the patient’s bedside and encouraging the family to sit, talk to and touch the patient.

Yes, the family knew what was happening anyway and when they came back in, just stood with the wife for a while and, I don’t know, I think she wanted me to be there for a little bit. Because we did have such a good rapport I think she just sort of held on to my arm, you know, it was like, it’s okay, sit down and encouraged her to talk to him and all that and of course she asked, can he hear me and you have to say, well, I don’t know but personally I believe, I’d like to think so. So she sat down and held his hand and had a chat and then I left, I stepped out and all the family sort of had their little time in there and basically they were all in there, yes, until he passed away. (Participant 5)

I think that’s another big thing, is permitting people to touch and talk and cry. I think those are the three biggest things. I think with all the lines and tubes, patients’ families generally hold back, concerned that they might knock something out or do the wrong thing and a cranky nurse is going to jump all over them. But I think if we explain, well, you can touch them here or touch them there if there is risk of something becoming dislodged. (Participant 1)

Being there was not only a physical presence, but also involved emotional investment of the nurse.

I mean we still cry. I mean there was a team leader crying with those deaths last week. But that’s alright. I don’t think crying is bad. I think crying is good. Yeah. So I think if something’s sad, there’s nothing wrong to cry, even 60

with the family seeing her . . . I must admit, I haven’t done that for a while. But you know, even—you know, in this unit, there’s one family where I think I took the tissue box out of the mother’s hand because I was the one bawling. They just laughed. But they enjoyed that I still—that you still could feel, that you could still care and that sort of stuff. We had a—I had a real special bond with family. So it’s alright to cry. I don’t apologise for it. I’m not embarrassed by it either. In front of my colleagues, I’m not either. If it’s sad and I’ve got tears in my eyes, well, that’s how it is. Someone comes and gives me a hug and off we go. Yeah. (Participant 4)

Without this emotional investment, the nurse may risk focusing on the process and tasks of end-of-life care at the expense of caring for the family. Inexperience and discomfort with providing end-of-life care are factors that contribute to nurses avoiding being physically and emotionally present for the patient and family.

Other just little subtle things. She has a body bag and the thing’s in the room, just as the family was leaving. So yeah. Maybe that was just a little bit premature . . . I don’t think the family knew what it was. But yeah, but just— she was just trying to think of being efficient. She was thinking of doing her job, rather than, I think, thinking with her heart a little bit. But I think she was too afraid to think with her heart. Not that—I don’t think that she intentionally would have done anything like that. But I think it was just her inexperience. (Participant 4)

I guess she was afraid—it seemed like she was afraid to speak to the family or to be in the room. Or she’d go in the room and be tiptoe in, tiptoe out, sort of thing, instead of—I don’t know. She obviously didn’t have much death experience. (Participant 4)

I think nurses as well can be very task orientated and sort of can hide behind being busy doing tasks. (Participant 1)

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Physical and emotional presence by the intensive care nurse is important in facilitating end-of-life care by supporting family members. For a nurse to be there at the end of life for patients and their families, they need to feel comfortable with being there themselves.

As previously outlined, participants in this study valued participating in end-of-life care and identified their role in influencing the end-of-life experience for patients and their families. Creating memories and positive experiences were practices undertaken by intensive care nurses in facilitating end-of-life care. All nurses can contribute to the creation of memories and positive experiences that families may carry with them through their lives.

This is the most horrific, horrible thing that they’re ever going to face, this family. They’re losing someone that’s most important to them in their life but it doesn’t have to be so bad. I think there’s little things you can do that change someone’s perception of the whole thing even though it sucks. (Participant 5)

I think often families—I think we have a lot of—not the word controller part, but we have influence, I think, on how people die and the memories that those families take away through the death process. (Participant 4)

All participants in this study described actions that they undertook to assist in creating memories for the patients’ families. Participants described examples of creating memories such as taking the patients’ hand prints and collecting a lock of the patients’ hair and their identity bands for the families to keep. These activities can be offered to all families, regardless of the nurse’s level of skill and expertise in end-of-life care.

Some participants in this study described experiences in which the role of the nurse was pivotal in supporting families to have meaningful experiences with their relative at the end of life. These stories indicated an advanced level of practice whereby the nurse involved could intuitively grasp the family situation, identify a meaningful 62

moment and respond appropriately to assist in creating a positive experience. The importance of these experiences for the family was highlighted when the family acknowledged the nurse for their work.

I wrote a book for this little girl, for both of them. After hearing the discussion . . . I drew upon what I had heard the father talking to the little girl about . . . I didn’t get the husband’s permission and I didn’t tell anybody that I was doing this. I don’t know where I stood ethically. I just was really driven by concern for this little four year old, and also just the lack of vocabulary that this man had for explaining death. The book was created . . . Then I went to the funeral and he actually read that book out in lieu of a eulogy. So he was still so without vocabulary or anything that this was just something. I was struck by the significance of what the book became. Then he actually wrote a letter to the CEO about the care that his wife had got. I got a phone call from the CEO. That really blew me away. (Participant 2)

Most recently there was a 27 year old that was dying of leukaemia. She was very strong willed. She knew what she wanted and what she didn’t want. By hook or by crook, she wanted a cigarette before she died because that’s what she and her dad used to do; they used to smoke together, even with the leukaemia. I thought it was really important to give dad and the daughter the opportunity to hang out on the balcony. It’s very against the rules here to have cigarettes on the balcony. We wheeled her out there. We sat her up. She could hardly sit up. But the significance of lighting . . . We weren’t obstructed. She was no longer . . . As far as I was concerned; we had moved to comfort care, which is a euphemism for palliation. We had moved her to comfort care. If comfort is the criteria, then you’re looking at emotional, physical, psychological comfort, not only of her but also of the extended family. The significant relationships are really important in terms of end-oflife care and creating comfort so that the person dies with as much ease and release as possible. So we got her out to the balcony. It was just through wilfulness that she managed to sit on the edge of that bed with her dad. She lit up. I don’t think she inhaled, but she lit up. That was a significant thing.

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They were there for the duration. We came back in and she died within 12 hours of that. (Participant 2)

I think it’s a very personal—I think it’s an intensely personal time. I think people should have a choice in how they do that . . . We had one lady whose birthday the next week and they’d bought presents. They asked will we bring them in? So they brought in the presents and they played music. They had like a picnic. It sounds maybe disrespectful to other people, but for them it was the right way to do it. I guess personal life is—they don’t—people don’t know that they can personalise the death. Put up pictures, put up music, get their own blankets, get whatever, and make it a personal experience, rather than the stark white and tippy-toe around. So there was laughter. There was crying. I think they made a real—and the mother wrote me afterwards and said thank you, because it was something that she could then take with her, rather than the tiptoeing around and the whispers in the corridor and the— you know, sort of stuff. So anyway. So I guess that’s how I think of lots of— I guess it’s my own experience, seeing somebody else’s. Then just this woman saying that she appreciated being able to be involved in the care. (Participant 4)

The findings of this phase of the study suggest that in the provision of end-of-life care, all nurses can facilitate the creation of memories for families. At an advanced level of practice, personalised meaningful experiences could be facilitated for families of patients at the end of life. A relationship with the family and an intuitive grasp of the situation is necessary for this to occur. Creating memories and positive experiences is a satisfying aspect of end-of-life care practice for intensive care nurses.

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5.6

Discussion

Findings from phase one of this study identified categories relating to the value nurses placed on the opportunity to participate in end-of-life care and their beliefs that end-of-life care is an advanced practice skill. Participants felt that the value and complexity of end-of-life care was not always recognised by their nursing colleagues and other health care professionals. Variation in personal beliefs about end-of-life care can thus influence how one approaches end-of-life care and the care provided to patients and their families.

The ICU has some unique features and the provision of end-of-life care in this context has some differences from end-of-life care in other settings. Specifically, organisational and emotional support, the intensive care bedside environment and the intensive care nurses relationship with the patient and the patient’s family are factors that emerged from interviews with critical care nurses that may influence critical care nurses’ end-of-life care experiences and practices. Nurses in this phase of the study described interventions to modify the bedside environment and humanise the patient to create a context that supported the provision of end-of-life care.

Nurses in this phase of the study described practices undertaken in the facilitation of end-of-life care that included providing options and respecting choices, explaining and providing information, providing comfort care, being there, and creating memories and positive experiences. The practices that nurses described varied according to their own personal beliefs, their comfort with death and dying and their expertise in providing end-of-life care to patients and their families.

Importantly, from the findings of phase one, aspects of critical care nurses’ end-oflife care practices similar to those presented in Clarke et al.’s (2003) domains of endof-life care were identified. In addition, other aspects of end-of-life care, such as the value of participating in end-of-life care and the emotional support obtained through collegial support networks, were consistent with evidence in the literature review (Calvin et al., 2007; Fridh et al., 2009; Halcomb et al., 2004; Jones & FitzGerald, 1998; Kirchhoff et al., 2000; Shorter & Stayt, 2010).

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5.7

Summary

The findings of phase one of this study provide insight into the end-of-life care experiences and practices of critical care nurses. The content of the survey instrument developed in phase two of this study was informed by the literature review and the findings of phase one presented in this chapter. The next chapter documents the development of the survey instrument and the methods used to obtain expert review and pilot test the survey instrument.

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6 6.1

PHASE TWO METHODS Introduction

The purpose of phase two of this study was to develop a survey instrument informed by an extensive review of the literature related to end-of-life care in critical care settings and the findings of phase one of this study. Phase two included a review of the survey instrument by a panel of experts and a pilot test of the survey instrument to determine the reliability of the instrument and feasibility of methods planned for use in phase three of this study. This chapter will first describe the development of the survey instrument. The methods used in obtaining expert review of the survey instrument including selection of panel members, review procedures and data management and analysis will then be described. The process of pilot testing the survey instrument will then be discussed, including the setting and sample, procedures and data management and analysis.

6.2

Development of the survey instrument

A suitable survey instrument was not available to identify the end-of-life care practices and the factors influencing these practices as reported by Australian critical care nurses. Therefore, a survey instrument needed to be developed for use in this study. Lynn (1986) describes a three-step process for the development of a survey instrument. The three steps are identification of domains and subdomains of the content of interest, item generation for each domain and subdomain, and formatting of the instrument into a usable form. To answer the research questions in phase three of this study, three main sections were required in the survey instrument: critical care nurses’ end-of-life care practices, factors influencing the provision of end-of-life care and demographic information. The first two steps in developing the survey instrument—identifying the content of interest and item generation for each of the sections of the survey instrument—is outlined in further detail below. The third step in instrument development, as suggested by Lynn (1986), involves developing the instrument into a usable format. Key Survey provided the platform for the online survey (WorldAPP Key Survey, 2009, 2011). The existing template was used for the 67

survey with some minor adjustments made to the shading of alternate items to improve readability. The guidelines for web questionnaires outlined by Dillman, Smyth, and Christian (2009) were reviewed, and appropriate formatting changes were made to enhance the readability and usability of the survey for participants.

6.2.1

Critical care nurses’ end-of-life care practices

The Critical care nurses’ end-of-life care practices section of the survey instrument aimed to address the research question: What are the most frequently reported endof-life care practices of Australian critical care nurses? Following a review of the literature, the domains of end-of-life care identified by Clarke et al. (2003) were chosen as a framework for the Critical care nurses’ end-of-life care practices section of the survey instrument. These domains provided comprehensive coverage of all aspects of end-of-life care in the critical care setting identified in an extensive review of the literature and the findings of interviews with critical care nurses in phase one of this study (see Table 6–1). The six domains that incorporated clinicians’ practices directly related to the care of the patients and their families were included in this section of the survey instrument. The seventh domain—emotional and organisational support for clinicians—was not included in this section of the survey instrument as it does not relate directly to care of the patient; however, this domain was included in the Factors influencing the provision of end-of-life care section of the survey instrument.

The items in the Critical care nurses’ end-of-life care practices section of the survey instrument were empirically derived from an extensive review of the literature in relation to end-of-life care in critical care settings and the findings of phase one of this study. The Critical care nurses’ end-of-life care practices section of the instrument requires respondents to rate how often they undertake select practices when caring for a patient at the end of life. These items were measured using a fivepoint rating scale in which 1 = never, 2 = rarely, 3 = sometimes, 4 = often and 5 = always. This rating scale was selected to provide evidence of the frequency with

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which specified practices are undertaken in the provision of end-of-life care by respondents to the survey.

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 Domain (Clarke et al.

Phase one findings

2003)

A priori scale in instrument

Facilitating the family’s Patient and family

experience: Providing

Patient and family centred

centered decision making

options and respecting

decision making

choices Communication within the Facilitating the family’s team and with patients and experience: Explaining

Explaining and providing information

families

and providing information

Continuity of care

—

Continuity of care

Emotional and practical

Humanising the patient

Emotional and practical

support for patients and

Facilitating the family’s

support for patients and

families

experience

families

Modifying the bedside

Comfort care—

environment

environmental factors

Symptom management and comfort care

Spiritual support for patients and families

Comfort care

—

Symptom management and comfort care Spiritual support

Note. The domains continuity of care and spiritual support were not identified in the categories and subcategories of interview data in phase one of this study.

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6.2.2

Factors influencing the provision of end-of-life care

The PARIHS framework was originally developed to describe factors influencing the uptake of evidence in clinical practice (Kitson et al., 1998). As noted in the literature review chapter, this framework provides a suitable framework for this study to identify factors that may influence nursing practice in relation to end-of-life care. Specifically, the elements of context, evidence and facilitation were identified as the key domains to be explored with items in the survey instrument that identify the respondents’ attitudes and beliefs, and perceptions of their workplace in relation to factors that may influence the provision of care to patients at the end of life and their families. The a priori scales within each domain in this section of the survey instrument, presented in Table 6–2, were empirically derived from an extensive review of the literature and the findings from phase one of this study. This section of the survey instrument aimed to address the research question: What are the select context, evidence and facilitation factors influencing end-of-life care as perceived by Australian critical care nurses?

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 Domain Context

A priori scales Organisational culture Resources Patient and family preferences

Evidence

Nursing education and experience Nurse practice knowledge Emotional support

Facilitation

Nurses’ end-of-life care values and beliefs Coordination of care delivery

The Factors influencing the provision of end-of-life care section of the survey instrument included items from the Neonatal Palliative Care Attitude Scale 70

(NiPCAS; Kain, Gardner, & Yates, 2009). The 26 items of the NiPCAS (Kain et al., 2009) were reviewed and considered to address some of the contextual elements pertinent to end-of-life care in an adult critical care unit. Four items from the NiPCAS were not included in the survey instrument for the current study as they were deemed not relevant to the purpose of the current study or context of critical care in the adult patient population. These items were about society’s attitude to palliative care, pain management and the perception that caring for dying patients is traumatic. The remaining items from the NiPCAS were adapted to reflect the adult patient population and the term end-of-life care was substituted for palliative care. Following review by the expert panel and pilot testing of the survey instrument, only 14 items from the NiPCAS were retained in the final version of the survey instrument used in phase three of this study.

The Factors influencing the provision of end-of-life care section of the survey instrument also includes the Death Anxiety Scale (DAS; Templer, 1970). The DAS consists of 15 items and each is measured dichotomously (true/false) and then a score out of 15 is calculated. Nine of the items are keyed true and six of the items are keyed false. The DAS has also been converted to be measured on a seven-point Likert scale (McMordie, 1979). To maintain consistency with the rest of the survey instrument, in the current study, a five-point Likert scale was used. The DAS has previously been tested for reliability and validity (Templer, 1970; McMordie, 1979) and was included in the current study to provide evidence of critical care nurses’ comfort with death and dying.

In addition to the items from the NiPCAS and DAS, the Factors influencing the provision of end-of-life care section of the survey instrument included items generated from a review of the literature and the findings of phase one of this study. The items in the Factors influencing the provision of end-of-life care section on the survey instrument are measured using a five-point Likert scale in which 1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree and 5 = strongly agree. Although Kain et al. (2009) located the neutral response to the far right of the scale in the NiPCAS instrument to minimise response bias with participants choosing this option, in the current study, the neutral response was located in the centre of the scale to maintain consistency with the other sections of the instrument, avoiding respondent confusion. 71

6.2.3

Demographic information

Items in the demographic information section were developed to provide consistency with the Australian Institute of Health and Welfare (AIHW, 2011) Nursing and Midwifery Labour Force 2009 survey and the Intensive Care Resources and Activity: Australia and New Zealand 2007/2008 report (Drennan et al., 2010) to permit comparison of the sample to the broader nursing and critical care nursing populations. The demographic information collected included age, gender, location, years of experience as a registered nurse, years of experience as a critical care nurse, qualifications, current workplace, type of work, length of time since the participant had provided direct patient care and the length of time since the participant had provided end-of-life care.

6.3

Expert panel

In addition to the steps outlined by Lynn (1986), DeVellis’s (2003) guidelines for developing a survey instrument include additional steps related to review of the survey instrument by a panel of experts and pilot testing. This section outlines the methods used in obtaining expert review of the survey instrument, while the methods used in pilot testing are discussed in Section 6.4.

6.3.1

Participants

A purposive sampling technique was used to invite six registered nurses identified as having expertise in critical care, palliative care and/or instrument development to form a panel to review the survey instrument. The sample included an international expert in end-of-life care in critical care settings. The purposive sampling technique is an appropriate sampling strategy for the purpose of selecting participants who can provide feedback on the content of the survey instrument. A sample size of six experts is recommended when ascertaining the validity of an instrument by calculating the content validity index (CVI). A sample of six enables at least one 72

person to disagree with an item, while still maintaining the content validity of the item within an acceptable range (Lynn, 1986; Polit & Beck, 2006).

6.3.2

Procedure

The panel were contacted via email (see Appendix 13.7) and invited to participate in the expert review of the survey instrument. To enable the panel of experts to assess the instrument, they were provided with an information sheet (Appendix 13.8) detailing the purpose and scope of the survey, research questions, definitions of key terms (end-of-life care, practices, context, evidence and facilitation) and the measurement scale on which items in the survey are measured (Davis, 1992; Grant & Davis, 1997; Lynn, 1986). Each panel member was also provided with a uniform resource locator (URL) link to the online survey, where they could complete their review. Key Survey software version 7.2 provided the platform for the online survey during phase two of the current study.

The validity of an instrument is the degree to which it measures what it was developed to measure (Polit & Beck, 2008). The panel of experts assessed the content validity of the online survey instrument. The panel were asked to rate each item for the relevance to end-of-life care in the critical care setting using a four-point ordinal rating scale in which 1 = not relevant, 2 = somewhat relevant, 3 = quite relevant and 4 = highly relevant (Davis, 1992; Grant & Davis, 1997; Lynn, 1986; Polit & Beck, 2006). These relevance ratings were used to calculate a CVI to indicate the perceived relevance of individual items (I-CVI) and the overall content validity of the instrument, or scale content validity index (S-CVI), as assessed by the experts (Lynn, 1986; Polit & Beck, 2006).

Face validity of the instrument was also assessed by asking the panel of experts to provide comment on the content in regard to coverage of the domains of interest and to suggest the addition, deletion and revision of individual items (Grant & Davis, 1997; Lynn, 1986; Polit, Beck, & Owen, 2007). The experts were also asked to comment on the readability of the survey instrument. 73

6.3.3

Data management and analysis

The I-CVI was calculated by hand from the number of experts that rated the item as 3 or 4 divided by the total number of experts. These individual item scores were then combined and divided by the total number of items to produce an average CVI, that reflects the overall content validity of the instrument (S-CVI) (Polit & Beck, 2006). An I-CVI score of 0.80 or greater and an S-CVI score of 0.90 were considered satisfactory (Grant & Davis, 1997; Lynn, 1986; Polit & Beck, 2006; Polit et al., 2007). Individual items with an I-CVI less than 0.80 were deleted or modified. Comments by the expert panel guided the development of additional new items (Polit et al., 2007).

The findings of the analysis and the expert panel’s comments about the survey’s content and readability were reviewed and discussed with the supervisory team. Following analysis of the expert panel’s responses, the survey instrument was revised and resent to the panel for further comment.

6.4

Pilot test

The final step in the development of the survey instrument in this study involved a pilot test, to obtain preliminary evidence of the reliability and validity of the newly developed survey instrument. Pilot testing also assessed the feasibility of methods planned for use in the collection and analysis of quantitative data in phase three of this study. An initial pilot test was undertaken in Semester 1, 2010. Some of the scales of the instrument were not found to be robust measures of the constructs of interest in this study. As a result, the instrument was revised and a repeat pilot testretest was undertaken in Semester 1, 2011, to reassess the validity and reliability of the instrument. The setting and sample, procedure, and data management and analysis used in pilot testing the survey instrument are described below.

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6.4.1

The setting and sample

The pilot test was conducted on a sample of registered nurses with experience in critical care. A convenience sampling technique was used to invite registered nurses currently employed in a critical care setting and enrolled in a postgraduate critical care nursing subject at an Australian university to participate in the pilot test of this study.

6.4.2

Procedure

Potential participants were contacted via an email distributed through the Key Survey version 7.2 software (WorldAPP Key Survey, 2009) to individual students’ university email addresses. A copy of the email invitation, reminder email and study information sheet sent to pilot test participants is provided in Appendices 13.9 and 13.11. The ‘capture respondent email address’ feature was used to enable the researcher to view the list of email addresses of respondents who took the survey (completes and incompletes) to enable follow-up reminder emails to be sent to selected participants. This feature also captures individual email addresses on survey responses, enabling the researcher to link data for the purposes of test-retest reliability. In addition to completing the survey, the participants were provided with space to comment on the readability and content of the survey instrument.

Reminder emails were sent to non-responders two and four weeks after initial distribution. The survey was open for six weeks. Two weeks later, all students who had participated by completing the survey were invited to complete the survey again to permit test-retest reliability. This time frame is considered a reasonable period of time to limit the possibility of participant responses changing as a result of experience or changes in practices (Marx, Menezes, Horovitz, Jones, & Warren, 2003).

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6.4.3

Data management and analysis

Survey responses were exported from Key Survey into PASW version 18 for data analysis. Cronbach’s alpha was calculated to identify the internal consistency of items in each scale identified a priori. The corrected item-scale correlation and the Cronbach’s alpha if an item was deleted were reviewed for each item and items were considered for deletion if they were found to influence the reliability of the scale (DeVellis, 2003).

Test-retest reliability was conducted by calculating the Pearson product-moment correlation coefficient (r) to determine the reliability of the survey instrument in obtaining consistent results on repeated measures (Polit & Beck, 2008). Cohen’s (1988) criteria for interpreting the size of correlation coefficients with ±.1 a small effect, ±.3 a medium effect and ±.5 a large effect, were used in the reporting of results. Reliability coefficients of greater than .70 were considered satisfactory (Hair, Black, Babin, Anderson, & Tatham, 2006), although lower reliability coefficients may be considered satisfactory when measuring affective domains or in exploratory research (Field, 2009; Hair et al., 2006).

6.5

Summary

In summary, the development of a survey instrument was necessary to achieve the purpose of this study and answer the research questions. The scales in the survey instrument and the items generated to capture the content of the scales were empirically derived from the findings of phase one of the current study and an extensive review of the literature. A selection of items from the NiPCAS and the DAS were also included in the survey instrument. Review of the survey instrument by an expert panel provided evidence of the content validity. Pilot testing was also undertaken to obtain preliminary evidence of the reliability of the survey instrument and feasibility of methods planned for use in phase three of this study. The results obtained from expert review and pilot testing of the survey instrument are provided in the next chapter. 76

7 7.1

PHASE TWO RESULTS Introduction

Review by an expert panel and pilot testing of the survey instrument provided preliminary evidence of the validity and reliability of the survey instrument developed for this study. The results of phase two of this study also informed the modifications undertaken to the survey instrument and minor changes to the methods planned for use in phase three. This chapter documents the findings from the expert review and pilot test of the survey instrument. Specifically, this chapter will address the composition of the expert panel, the content validity of the survey instrument based on analysis of the ratings provided by the expert panel, the characteristics of participants involved in pilot testing the instrument and the results of internal consistency and test-retest reliability of the scales of the survey instrument proposed a priori.

7.2

Expert panel

Initially, seven registered nurses were identified as potential participants and invited to join the current study’s expert panel and participate in the review of the survey instrument. Four of these registered nurses agreed to participate, completing a review of the survey instrument online. Two registered nurses declined to participate, citing workload issues and perceived lack of expertise in the topic under investigation. Another registered nurse declined to participate and instead referred the researcher to a nursing colleague who was more closely aligned with the topic under investigation and, upon invitation, this person agreed to participate. A further two potential participants were then approached to participate, and one agreed to participate and the other did not respond to the invitation. The final panel, therefore, comprised six participants. These participants were employed in academic or research positions and their primary areas of expertise are outlined in Table 7-–1. Clinician views on the survey instrument were obtained during the pilot testing phase of instrument development in this study.

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Table 7-1: Expert panel members Reviewer Area of expertise 1

Neonatal intensive care and instrument development

2

Critical care nursing

3

Palliative care

4

International expert in end-of-life care in intensive care settings

5

Palliative care

6

Critical care, end-of-life care and instrument development

The CVI for the survey instrument overall (S-CVI) and for each item (I-CVI) was calculated from the relevance ratings provided by the expert panel. The initial S-CVI for the survey instrument was .88. The initial S-CVI for the Critical care nurses’ end-of-life care practices section of the survey instrument was .90 and the CVI for each item (I-CVI) in this section of the survey instrument is provided in Table 7–2.

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 Item

I-CVI

Patient and family centred decision making Provide the family with options about the care of the patient

1.00

Ask the family if they would like to be involved in the care of the patient

1.00

Ask the family their preferences for the patient’s care

1.00

Attend family meetings with the medical team

1.00

Reassure the family that they are not responsible for any EOL decisions made

.66

Ask the family about their knowledge of the patient’s wishes for EOLC

.83

Explaining and providing information Answer the family’s questions about the patient’s condition

1.00

Fully inform the family about all aspects of the plan of care

1.00

Explain all interventions undertaken in the care of the patient

1.00

Provide information to the family about the dying process

1.00

78

Item

I-CVI

Explain to the family what is happening to the patient

1.00

Encourage the family to reminisce about the patient

1.00

Listen to the family reminisce about the patient

.83

Continuity of Care Arrange for transfer of the patient out of the ICU after a decision to withdraw treatment

.50

Document the family’s preference for the care of their relative

.83

Introduce the nursing staff on the oncoming shift to the patient and family

.83

Handover the family’s preference for the patient’s EOLC to the oncoming nurse

1.00

Emotional and practical support for patients and families Permit the family to visit outside of regular visiting hours Adhere to unit policy on the number of visitors at the patient’s bedside

1.00 .33

Encourage the family to talk to the patient

1.00

Encourage the family to touch the patient

1.00

Provide the family with access to a private room to congregate

1.00

Arrange for a counsellor or social worker to meet with the family

.83

Stay in the room with the patient and family

.66

Ask the family about their feelings

.83

Ask the family how they are coping

1.00

Provide opportunities for the family to create positive memories

.83

Comfort care—environmental factors Move the patient to a more private area of the unit

1.00

Create a calm, peaceful environment

1.00

Turn off monitoring equipment

1.00

Silence alarms on all equipment

1.00

Symptom management and comfort care Administer fluids to the patient to maintain hydration

.66

Keep the patient sedated

.66

Provide adequate pain management

1.00

Provide care to maintain patient hygiene

1.00

Provide pressure area care

1.00

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Item

I-CVI

Remove the endotracheal tube if the patient is breathing spontaneously

1.00

Maintain the patient’s airway using oro/endotracheal suction

.66

Spiritual support Ask the family about spiritual needs

1.00

Offer to arrange for a spiritual advisor or pastoral care representative to visit

1.00

the patient and family Support the family to participate in cultural practices related to dying

1.00

Ask the family about cultural needs

1.00

Note. EOL = end of life; EOLC = end-of-life care; ICU = intensive care unit.

The initial S-CVI for the Factors influencing the provision of end-of-life care section of the survey instrument was .84 and the I-CVI in this section of the survey instrument is provided in Table 7–3.

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 instrument Item

I-CVI

Organisational culture The medical staff support EOLC for patients in my unit In my Unit, the team expresses its opinions, values and beliefs about providing care to dying patients All members of the health care team in my Unit agree with and support EOLC when it is implemented for a patient After a decision to withdraw life-sustaining treatment is made, nurses are left to manage the care of the patient After a decision is made to withdraw treatment, the intensive care medical team in my unit reduce their contact with the patient In my Unit, the staff go beyond what they feel comfortable with in using technological life support In my Unit, staff are asked by families to continue extending care beyond 80

1.00 .83

1.00

1.00

.66

.83 .50

Item

I-CVI

what they feel is right EOLC should be allocated to experienced nurses

.80

Resources The physical environment of my Unit is ideal for providing EOLC My Unit is adequately staffed for providing the needs of dying patients and their families When a patient dies in my Unit, I have sufficient time to spend with the family There are policies/guidelines to assist in the delivery of EOLC in my Unit Lack of staff results in no ‘down time’ between the death of a patient and the admission of the next patient

1.00 1.00

1.00 .83 .83

Patient and family preferences In my Unit, families are involved in decisions about their dying relative In my Unit, withdrawal of treatment is delayed whilst waiting for relatives to arrive

1.00 1.00

Nursing education and experience I have received in-service education that assists me to support and communicate with families of dying patients I have had experience of providing EOLC to patients and their families

.83 1.00

I am often exposed to death in the critical care environment

.83

EOLC is necessary in critical care nursing education

.83

Emotional support When a patient dies in my Unit, counselling is available if I need it

1.00

In my Unit, nurses are expected to cope with death and dying

1.00

I feel supported when caring for a patient at the EOL

1.00

After caring for a patient at the EOL, my colleagues will ask me if I am OK

1.00

Formal debriefing occurs after providing EOLC

1.00

Staffing is arranged to allow nurses to have a rest break after the death of a patient

.66

Nurses’ end-of-life care values and beliefs My previous experiences of providing EOLC have been rewarding I feel a sense of personal failure when a patient dies

81

1.00 .50

Item

I-CVI

It is a privilege to care for a patient at the EOL and their family

1.00

Nurses can influence the patient and family’s experience of EOLC

1.00

EOLC is against the values of critical care nursing

.16

EOLC is as important as curative care in the critical care environment

.83

Curative care is more important than EOLC in the critical care environment

.33

My personal attitudes about death affects my willingness to deliver EOLC

.83

Coordination of care delivery Patients should be transferred out of intensive care after a decision is made to withdraw life-sustaining treatment Nurses that know the patient and family should be allocated to care for the patient to maintain continuity of care

.66

.83

Note. EOL = end of life; EOLC = end-of-life care.

Items with a CVI below .80 were reviewed. Seven items were deleted as they were not considered relevant to end-of-life care in the adult critical care context, were similar to other items rated as relevant by the expert panel and/or achieved a very low CVI (see Table 7–4). Following deletion of these seven items, the overall content validity index of the survey instrument (S-CVI) was recalculated at .91 and identified as at a satisfactory level (Grant & Davis, 1997; Lynn, 1986; Polit & Beck, 2006; Polit et al., 2007). The revised S-CVI for the Critical care nurses’ end-of-life care practices section of the survey instrument was .93 and the revised S-CVI for the Factors influencing the provision of end-of-life care section of the survey instrument was .89.

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Table 7-4: Items deleted from the survey instrument following review by the expert panel Item Reassure the family that they are not responsible for any EOL decisions made Arrange for transfer of the patient out of the ICU after a decision to withdraw treatment Adhere to unit policy on the number of visitors at the patient’s bedside In my Unit, staff are asked by families to continue extending care beyond what they feel is right EOLC is against the values of critical care nursing Staffing is arranged to allow nurses to have a rest break after the death of a patient Patients should be transferred out of intensive care after a decision is made to withdraw life-sustaining treatment Note. EOL = end of life; EOLC = end-of-life care; ICU = intensive care unit.

Although the CVI of the items I feel a sense of personal failure when a patient dies (I-CVI = .50) and After a decision is made to withdraw treatment, the intensive care medical team in my unit reduce their contact with the patient (I-CVI = .66) were low, these items were retained in the survey. Death as failure and the withdrawal of the medical team following withdrawal of life-sustaining treatment were identified as important items that may influence the provision of end-of-life care by participants currently working as clinicians in an ICU in phase one of this study. In addition, the perception of death as failure and the withdrawal of the medical team following withdrawal of life-sustaining treatment have been identified in other previous qualitative research undertaken in Australia (Halcomb et al., 2004; Heland, 2006).

The CVI of items pertaining to symptom management and the physical care of the patient, Keep the patient sedated (I-CVI = .66), Maintain the patient’s airway using oro/endotracheal suction (I-CVI = .66) and Administer fluids to the patient to maintain hydration (I-CVI = .66) were below the level deemed satisfactory (I-CVI = .80). However, these items were retained in the survey as they had been identified in

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the previous literature and/or the phase one findings of this study as practices undertaken by critical care nurses in the provision of end-of-life care.

The item Stay in the room with the patient and family (I-CVI = .66) was modified to include if the family wants, acknowledging that practices may be adapted to meet the needs of different families. The item Curative care is more important than end-of-life care in the critical care environment (I-CVI = .33) was revised to read End-of-life care is as important as curative care in the critical care environment. Following review by the expert panel, two additional items were added to the survey instrument: Ask family members if there is anyone that they would like to be there and In my unit, when a diagnosis with a likely poor outcome is made, families are informed of their end-of-life care options.

After modifications were made to the survey instrument, it was recirculated to the expert panel and additional feedback from four of the experts was provided by return email. This feedback consisted of suggestions for minor changes such as deleting ‘Australian’ from the survey title, standardising the use of either ‘unit’ or ‘Unit’ and the formatting and location of response options within the survey instrument.

7.3

Pilot test

During Semester 1, 2010, an initial pilot test of the survey instrument was undertaken. In total, 17 out of 51 critical care nurses enrolled in a postgraduate nursing subject at an Australian university participated in the initial pilot test of the instrument, a response rate of 33%. Retest of the survey was completed by eight participants. A further three accessed the survey and provided demographic information but did not complete the rating scales or subsequent questions.

The findings of this initial pilot test revealed that some of the a priori scales of the survey instrument were not robust measures of the constructs of interest in this study. As a result, the instrument was significantly revised. The item I have had experience providing end-of-life care to dying patients and their families was deleted as this 84

information was obtained from participant response to the item in the demographic section: Please specify the last time that you provided end-of-life care to a patient in a critical care unit. The items My previous experiences of providing end-of-life care have been rewarding and Formal debriefing occurs after providing end-of-life care were also deleted. These items were considered ambiguous and their intent was captured by other items in the survey instrument. Two items were also modified to read Keep the patient sedated, if appropriate and Administer analgesia via intravenous infusion.

Additional items were added to the survey instrument following reflection on the findings of the initial pilot test, the findings of phase one of this research study and further review of the previous literature of end-of-life care in critical care settings. Review of the PARIHS framework guiding the development of the Factors influencing the provision of end-of-life care section and consideration of the items within each scale proposed a priori assisted in identifying additional items relevant to the constructs of interest in this research study. Although these additional items, presented in Table 7–5 and Table 7–6, are listed under the scale headings proposed a priori, only section headings (Demographics, Practices and Factors) were included in the final survey instrument circulated to participants in phases two and three of this study and the a priori scale headings were not included.

Table 7-5: Additional items included in the Critical care nurses’ end-of-life care practices section of the survey instrument A priori scale

Additional items

Continuity of care

Ask the critical care team to document the plan of care / treatment orders

Comfort care—

Adjust (dim or turn off) the lighting around the patient’s bed

Environmental

space

factors

Play music Put up photographs of the patient, family members and/or pets Cluster/coordinate care to minimise interruptions and provide privacy for the patient and family 85

Draw curtains to provide privacy for the patient and family Place chairs around the bed for the family Symptom

Remove the endotracheal tube if the patient is breathing

management and

spontaneously

comfort care

Initiate (or implement) weaning from mechanical ventilation once the decision to withdraw mechanical ventilation has been made (ie. reduce FiO2, rate and/or tidal volume) Administer medications to prevent/minimise dyspnoea and respiratory secretions Regularly obtain and document patient vital signs during the provision of end-of-life care

Table 7-6: Additional items included in the Factors influencing the provision of end-of-life care section of the survey instrument A priori scale

Additional items

Organisational

In my unit, EOLC is mostly allocated to junior nurses

culture

In my unit, nurses view the provision of EOLC as an important component of critical care nursing

Resources

Private rooms are available to care for the patient at the EOL My unit is adequately equipped (chairs/recliners/waiting room etc.) to support the comfort needs of the family during EOLC When a patient dies in my Unit, nurses have sufficient time to spend with the family

Patient and family

In my unit, the patient’s preferences (or their likely preference

preferences

according to family) for EOLC are considered In my unit, families are given adequate time to consider decisions to withhold/withdraw treatment for the patient (their relative) In my unit, family meetings with the health care team are held to resolve differing views about a patient’s treatment

Nursing education

I have received in-service education that assists me to provide

and experience

care and manage patient symptoms at the EOL 86

My undergraduate nursing education included EOLC content My postgraduate nursing education included EOLC content relevant to the critical care context I draw on evidence from the literature to provide EOLC to patients and their families I feel adequately prepared to care for patients at the EOL I don’t know what to say to the family of a patient at the EOL I have limited knowledge of symptom management for patient’s at the EOL I have learnt from other nurses how to provide EOLC Nurse practice

Analgesia should be titrated to keep the patient comfortable

knowledge

even if this hastens death Pressure area care should continue to be provided for a patient at the EOL EOLC should include care of the patient’s family Abrupt withdrawal of mechanical ventilation may contribute to dyspnoea When withdrawing mechanical ventilation at the EOL, ventilator weaning (such as reductions in FiO2 and PEEP) should occur prior to extubating the patient or placing the patient on a T-piece Intravenous fluids should be provided to maintain hydration for the patient at the EOL The provision of EOLC requires emotional detachment It is OK to cry when a patient dies

Emotional support

My supervisors/managers ensure staff caring for patients at the EOL are supported My colleagues appreciate the stressors associated with caring for patients at the EOL My supervisors/managers provide guidance that assists me to provide EOLC

Nurses’ end-of-life

My own personal experiences of death have influenced the care

care values and

I provide to patients at the EOL

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beliefs Coordination of

In my unit, a plan of care for the patient is clearly documented

care delivery

by the medical team after a decision to withhold or withdraw treatment is made In my unit, the intensive care team and the patient’s primary medical or surgical team agree on a plan of care In my unit, patients remain in ICU for EOLC following a decision to withhold or withdraw treatment

Note. EOL = end of life; EOLC = end-of-life care; ICU = intensive care unit.

Due to the significant adjustments made to the survey instrument, it was determined that a repeat pilot test-retest was required to reassess the validity and reliability of the instrument prior to circulation of the instrument to a national sample in phase three of this research study. The findings presented in the remainder of this chapter refer to the results of the repeat pilot test and retest of the survey instrument.

7.3.1

Demographic information

During Semester 1, 2011, 62 potential participants were invited to participate in the repeat pilot test of the survey instrument. In total, 31 critical care nurses accessed and commenced the survey, a response rate of 50%. Five participants only partially completed the survey. Of these, responses from the two participants who completed both the demographic information section and the Factors influencing the provision of end-of-life care section were included in the data analysis. Responses from the three participants who only completed the demographic information section and partially completed the Factors influencing the provision of end-of-life care section were deleted and not included in the data analysis. The final response rate was 45% (n = 28). Test-retest reliability of the survey instrument was obtained by inviting participants to complete the survey instrument again, two weeks later. This retest of the survey was completed by 11 participants. A further two accessed the survey and

88

provided demographic information but did not complete the rating scales or subsequent questions.

The mean age of registered nurses completing the Semester 1, 2011, pilot test of the survey instrument was 32.2 years (SD = 7.9) and 17.8% of participants were male (n = 5). Years of experience in nursing ranged from one to 39 years with the majority of participants (57.1%) having five years or less experience in nursing. Years of experience working as a nurse in critical care ranged from one to 12 years with a mean of 4.7 years (SD = 3.3). The participants for the pilot test were recruited from a postgraduate critical care nursing subject, and their experience in nursing and critical care most likely reflects registered nurses pursuing further studies in their chosen specialty area of nursing practice. Table 7–7 outlines the characteristics of participants in the Semester 1, 2011, pilot test. The majority of participants reported that their highest qualification in nursing was an undergraduate degree or hospital certificate (89.2%). Only 10.7% of participants had a postgraduate degree; however, all participants were currently enrolled in a postgraduate critical care nursing course.

Table 7-7: Demographic characteristics of pilot test participants (n = 28) Characteristic

%

Age .9) (Tabachnick & Fidell, 2007). 120

8.5

Summary

This chapter has described the methods used to conduct a national online survey of a convenience sample of critical care nurses. An analytical approach involving descriptive statistics, EFA and multivariable analysis was described and interpretation of the results from these analyses will be used to answer the three key research questions proposed in the current study. The results of phase three of the study are presented in the next chapter.

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9 9.1

PHASE THREE RESULTS Introduction

The survey instrument was circulated to and available for completion by potential participants in phase three of this study during May and June 2011. This chapter will first outline participant recruitment and response to the survey instrument. The demographic characteristics of the sample and the descriptive statistics of individual items will then be presented. The results of EFA on the Critical care nurses’ end-of-life care practices and the Factors influencing the provision of end-of-life care sections of the survey instrument will be outlined. Bivariate and multivariable analyses will then be presented, with particular attention to the six practice models and their explanatory variables identified using the univariate general linear model procedure.

9.2

Phase three participants

Approximately 2,300 critical care nurses are members of ACCCN. When the survey was initially distributed in May 2011, 1,553 of these members had agreed to be contacted for research purposes and were invited to participate. Due to an increase in membership, the invitation to participate reminder notice was sent to 1,580 members (L. Herson, personal communication, June 21, 2011).

In total, 404 members of ACCCN responded to the survey invitation (response rate 25.5%). Eight persons responded via return email declining participation, stating that they were not currently working in clinical practice and could not complete the survey. As the survey was distributed through the ACCCN membership database, the researcher was unable to ascertain if any emails were undelivered.

The survey instrument was completed by 396 critical care nurses. The survey software did not capture those persons who partially completed the survey, so the response rate only reflects those who completed the survey. Responses from three participants were deleted as they identified that they had never provided end-of-life care. A duplicate response was noted in one instance, and the duplicate response was deleted. Therefore, 122

the final response rate was 25% (392/1568). A flow chart representing participant recruitment and response is provided in Figure 9–1.

Figure 9-1: Flow chart of participants in phase three

Note. EOL = end of life.

9.3

Demographic characteristics

The mean age of critical care nurse participants in phase three of this study was 43.1 years (SD = 9.2) and 13.5% of participants were male. Years of experience in nursing ranged from two to 43 years (M = 20.9; SD = 10.1), with 77.1% of participants 123

having more than 10 years of experience in nursing. Years of experience working as a nurse in a critical care unit ranged from 0 to 39 years (M = 14.4; SD = 8.2) and 64% reported more than 10 years of experience in the critical care setting. In addition to extensive years of experience, the majority of participants in phase three of this study had postgraduate qualifications in nursing (82.7%) and had completed or were currently undertaking formal education in critical care (90.3%). Table 9–1 outlines the age, gender, nursing experience, qualifications and education of phase three participants.

Table 9-1: Demographic characteristics of phase three participants (n = 392) Characteristic

%

Age