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2019-07-09

Temporizing Uncertainty: A Constructivist Grounded

Theory of Advanced Practice Palliative Care Nurses'

Prognostication in Non-Malignant Illnesses

Ferguson, Angela L.

Ferguson, A. L. (2019). Temporizing Uncertainty: A Constructivist Grounded Theory of Advanced

Practice Palliative Care Nurses' Prognostication in Non-Malignant Illnesses (Unpublished doctoral

thesis). University of Calgary, Calgary, AB.

http://hdl.handle.net/1880/110610

doctoral thesis

University of Calgary graduate students retain copyright ownership and moral rights for their

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UNIVERSITY OF CALGARY

Temporizing Uncertainty: A Constructivist Grounded Theory of Advanced Practice Palliative

Care Nurses' Prognostication in Non-Malignant Illnesses

by

Angela L. Ferguson

A THESIS

SUBMITTED TO THE FACULTY OF GRADUATE STUDIES

IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE

DEGREE OF DOCTOR OF PHILOSOPHY

GRADUATE PROGRAM IN NURSING

CALGARY, ALBERTA

JULY, 2019

© Angela L. Ferguson 2019

ii

Abstract

Palliative care nursing practices combine the science and art of nursing in unique ways.

Prognostication is a valued core skill that requires knowledge, intuition, curiosity,

conceptualization, and decision-making. The praxis of prognostication is complicated and

foundational to the culture and work of advanced practice PCN. This researcher, a member of the

group of study provides a unique glimpse into this culture of PCN. The study sought to

understand and discover a theory about the experiences of prognostication of individuals with

non-malignant illnesses by eleven PCN in a palliative care program, across care sectors. Ten of

the eleven nurses were advanced practice nurses in consultant roles and one in a front-line home

care position. All eleven nurses held positions that included the regular work of prognostication

in fulfillment of their nurse-patient role, especially related to care transitioning. The experiences

of these nurses were captured through observation of a nurse-patient prognostic consult followed

by participant interviews. The data consisted of one-to-one interviews with each PCN which

were then transcribed verbatim. Data analysis began following transcription with line-by-line

coding. Analysis was strengthened by the constant comparison method and use of field notes

and memoing. The analysis sought descriptions, patterns and relationships from the PCN for

shared meaning around prognostication in non-malignant illnesses. There were three main

categories that were identified which formulated the theoretical model of the factors and process

of prognostication by advanced practice PCN. The core category of ‘Temporizing Uncertainty’

suggests that at the centre of the experiences of the complex process and decision-making in

prognostication, PCN are subjected to conflicting and challenging cognitive and affective

psychological factors that influence the conative work of prognostication.

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These findings offer insight into PCN practices and carry implications for education and future

research in palliative care. The future aim is to enhance advocacy for end-of-life transitions for

patients and their families faced with chronic illnesses and in supporting clinical decision-

making. Keywords: Advanced illness, Chronic disease, End-of-life, Illness trajectory, Mortality,

Palliative Care, Prognosis, Prognosticate, Prognostication.

iv

Preface

This thesis is original, unpublished, independent work by the author, A. Ferguson. Ethics

approval for the project “Palliative Care Nursing Prognostication of non-malignant illness: A

Constructivist Grounded Theory of the experiences and processes Palliative Care Nurses use to

estimate length of life remaining” certificate number REB-16-0401_REN2 was renewed by the

Conjoint Health Research Ethics Board on May 12, 2019.

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Acknowledgements

I want to thank the palliative care nurses on our team who participated and shared their

experiences and knowledge with me. I am humbled by your generosity of time and by your

expertise. I know that this study would not have possible without you.

My supervisor Dr. Shelley Raffin-Bouchal who offered me encouragement and support on a

regular basis. Your palliative care knowledge, passion and insight was truly invaluable to me. I

enjoyed learning from you and know how fortunate I am to have been one of your students.

My supervisory committee Dr. Jessica Simon and Dr. Shane Sinclair, who offered in-depth

insights that reflected your palliative care perceptions, knowledge and research expertise. I know

you made my work that much better.

My late father Frank, who believed I could be anything I wanted to be. I miss you and your

wisdom every day. My mother Doreen, a nurse who dedicated her life to her vocation and

demonstrated that the richest life is one in service to others. My sister Cathie who always

inspires me to be the best I can be.

To the nurses and physicians who mentored and befriended me along the way throughout my

career. Claire Kibbler, Pauline Parlee, Diana Helgesen, Terri Lefort, Tina Hamm, Marilyn

Young, Leanne Armstrong and Kathy Rasmussen. Doctors Frank van Netten, Maria Celis,

Sandra Albuquerque and Sara Pawlik. I am so grateful.

A special acknowledgment to my colleague Heather Shantz, for making the suggestion to

consider pursuing my PhD.

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Dedication

With love to my husband Warren,

Thank you is not enough to express my gratitude.

Turris Fortis Deus Noster

Semper Fidelis

Dulcius Ex Asperis

vii

Table of Contents

Abstract ............................................................................................................................... ii

Preface................................................................................................................................ iv Acknowledgements ..............................................................................................................v Dedication .......................................................................................................................... vi Table of Contents .............................................................................................................. vii List of Figures .................................................................................................................... xi

Epigraph ............................................................................................................................ xii

CHAPTER ONE: INTRODUCTION TO THE STUDY ....................................................1 Background and Context......................................................................................................1 Prognostication ....................................................................................................................3 The Task of Prognostication ................................................................................................4

Relevance to Nursing ...........................................................................................................7 The Study .............................................................................................................................8

Study Objectives ..................................................................................................................9 Research Approach ..............................................................................................................9 Assumptions .......................................................................................................................10

The Researcher...................................................................................................................11 Rationale and Significance ................................................................................................12

Definitions of Key Terms ..................................................................................................13 Overview of the Thesis ......................................................................................................14 CHAPTER TWO: LITERATURE REVIEW ....................................................................16 Literature Review and Grounded Theory ..........................................................................16

Search Methods ..................................................................................................................17 Search Outcomes and Quality Appraisal ...........................................................................18

Results ................................................................................................................................18 Analysis..............................................................................................................................19 Factors that Impact Prognostication...................................................................................19

Communicating Prognostic Information............................................................................21 Decision-Making................................................................................................................22 The Nursing Role ...............................................................................................................22

Limitations .........................................................................................................................23 Discussion ..........................................................................................................................24

Summary ............................................................................................................................25 The Study and Addressing the Gaps ..................................................................................26 Significance of the Study ...................................................................................................27

CHAPTER THREE: THE METHODOLOGY .................................................................29

Research Design.................................................................................................................29

Philosophical Context: Pragmatism ...................................................................................30 Theoretical Context: Symbolic Interactionism ..................................................................31 Social Constructivism ........................................................................................................33 Rationale for a Constructivist Version of Grounded Theory .............................................34 Classical/Glaserian Grounded Theory ...............................................................................35

Straussian Grounded Theory..............................................................................................37

viii

Constructivist/Charmazian Grounded Theory ...................................................................38 Methods..............................................................................................................................39 Sampling and Recruitment .................................................................................................39

Data Collection ..................................................................................................................40 Materials ............................................................................................................................41 Ethics Procedure ................................................................................................................41 Observations and Interview Procedure ..............................................................................42 Instrumentation ..................................................................................................................44

Data Collection ..................................................................................................................44

Data Analysis .....................................................................................................................46 Study Evaluation ................................................................................................................49 Credibility ..........................................................................................................................52 Originality ..........................................................................................................................54

Resonance ..........................................................................................................................54 Usefulness ..........................................................................................................................54

Writing ...............................................................................................................................56 Limitations of the Study Methods......................................................................................56 Conclusion .........................................................................................................................57

CHAPTER FOUR: EMPIRICAL FINDINGS ..................................................................59 Findings..............................................................................................................................59

Finding One: Cognitive (Thinking) Factors ......................................................................60 Finding Two: Affective (Emotion) Factors .......................................................................60 Finding Three: Conative (Volition) ...................................................................................60 Participant Observations ....................................................................................................61

Presenting the Findings Through the Participants Voice ...................................................62 Death Awareness of Others ...............................................................................................62

Questioning Self.................................................................................................................63 Fallibility ............................................................................................................................64 Perceptions of Chronic Diseases ........................................................................................64

Describing Chronic Diseases Metaphorically ....................................................................65 Wonder ...............................................................................................................................66 Intuition ..............................................................................................................................66

Anticipating Dying and Preparing the Patient and Family ................................................67 Supporting Symptoms and Quality of Life ........................................................................68

The Process of Prognostication ..........................................................................................68 Figure 4.1 ...........................................................................................................................69 Knowing .............................................................................................................................69

Exploring............................................................................................................................71

Assessing............................................................................................................................73

Trending .............................................................................................................................74 Predicting ...........................................................................................................................76 Pronouncing .......................................................................................................................78 Mindfulness........................................................................................................................81 Active Listening .................................................................................................................82

Engagement........................................................................................................................83

ix

Attentive to Suffering ........................................................................................................84 Conclusion .........................................................................................................................86 CHAPTER 5: TEMPORIZING UNCERTAINTY ............................................................88

Figure 5.1 Temporizing Uncertainty..................................................................................91 Decision-Making................................................................................................................92 Finding One: Cognition (Thinking) Factors ......................................................................93 Death Awareness of Others ...............................................................................................93 Questioning Self.................................................................................................................94

Fallibility ............................................................................................................................94

Perceptions of Chronic Diseases ........................................................................................94 Describing Chronic Diseases Metaphorically ....................................................................94 Significance of Finding One ..............................................................................................94 Finding Two: Affective (Emotion) Factors .......................................................................99

Anticipating Dying and Preparing the Patient and Family ................................................99 Supporting Symptoms and Quality of Life ......................................................................100

Wonder .............................................................................................................................100 Intuition ............................................................................................................................100 Significance of Finding Two ...........................................................................................100

Finding Three: Conative (Acting) Factors .......................................................................108 Knowing ...........................................................................................................................109

Exploring..........................................................................................................................109 Assessing..........................................................................................................................110 Biological measures .........................................................................................................110 Personal Behaviours.........................................................................................................110

Trending ...........................................................................................................................112 Predicting .........................................................................................................................114

Pronouncing .....................................................................................................................115 Significance of Finding Three .........................................................................................116 Participant Observations ..................................................................................................117

Observation of Presence ..................................................................................................118 The Central Phenomena: Temporizing Uncertainty ........................................................118 Divergent Findings to Temporizing Uncertainty .............................................................126

Discussion ........................................................................................................................130 Concluding Summary of the Interpreted Findings...........................................................131

Limitations .......................................................................................................................131 CHAPTER SIX: IMPLICATIONS FOR PRACTICE AND RECOMENDATIONS .....133 Recommendations for Practice ........................................................................................134

Recommendations for Research ......................................................................................134

Contributions of the Study ...............................................................................................136

Conclusion .......................................................................................................................137 References ........................................................................................................................138 Appendix A: Literature Search Flowchart .......................................................................159 Appendix B: Study Search Terms and Inclusion Criteria ................................................160 Appendix C: Table 1- Quality Appraisal of Studies using the SURE Checklist .............161

Appendix D Table 2-Literature Review Studies ..............................................................163

x

Appendix E: Invitation to the Study ................................................................................178 Appendix F: Consent for Interview .................................................................................179 Appendix G: Consent for Observation ............................................................................183

Appendix H: Interview Guide ..........................................................................................187 Appendix I: Participant Demographic Information .........................................................188 Appendix J: Categories and Subcategories of the Study .................................................189

xi

List of Figures and Illustrations

Figure 4.1 PCN Process of Prognostication in Non-Malignant Illnesses…………………...…..69

Figure 5.1 Temporizing Uncertainty …………………………………………………………...91

xii

Epigraph

From my perspective it is not a ‘one off’, it is a process and it is a matter of collecting

information. I am one of those people, I am happy to keep someone on if it takes two or three

weeks to see how they are going to do. Study Participant

1

Chapter One: Introduction to the Study

This study sought to uncover a theory that explains the processes and experiences of

Palliative Care Nurses (PCN) in prognosticating with non-malignant illnesses. The purpose of

this qualitative constructivist grounded theory was to explore, with a sample of collegial PCN,

the perceptions and experiences they had of prognostication. It was anticipated that the theory

and knowledge gained from this study would in turn impact palliative care nursing knowledge

and future clinical practices.

The methods employed in this study to explore the phenomenon of PCN prognostication

were semi-structured interviews and participant observation. The participants of this study were

purposively sampled from the Alberta Health Services (AHS) Palliative Care Program consisting

of 11 advanced practice PCN who had a minimum of one year experience working in this

program. The AHS Palliative Care Program covers all care sectors including acute care,

homecare, long-term care, and intensive palliative care.

This chapter opens with an overview of the background and context of the study. Next,

the problem statement, purpose, and research questions will be presented. I will then briefly

outline the researchers’ perspectives and assumptions. Lastly, I will summarize the rationale and

significance of the study and provide key definitions and terms used.

Background and Context

Individuals in our society are living longer with more complex care needs, disability, and

symptom burden (Levin & Perkovic, 2013, p. 196). The prevalence of chronic diseases continues

to rise on a global basis in the context of an increasingly aging population (Lozano et al., 2013,

p. 2096; Williams et al., 2010, p. 2). Almost one in six Canadians are over 65 years of age, with

2

this group predicting to grow four times faster than the general population (Public Health

Agency of Canada [PHAC], 2017, p. 32). The current life expectancy is 79.9 years for men and

84 years for women (Statistics Canada, 2018). It is estimated that one in five Canadian adults

live with one of the following chronic diseases: cardiovascular disease, chronic respiratory

disease, or diabetes (PHAC, 2017, p. 1). The health-adjusted life expectancy (HALE) of

Canadians is 69 years for men and 70.5 years for women meaning that the average Canadian will

live out their remaining decade of life with some level of disability and ill health (Statistics

Canada, 2018, HALE, p. 18).

Lozano et al., noted that globally ischemic heart disease combined with all strokes

attributed to one quarter of the total global mortality in 2010 (p. 2112). Cirrhosis of the liver

increased 33% between 1990 and 2010, accounting for more deaths than hepatitis B, hepatitis C

and alcohol related deaths combined (p. 2112). Deaths from diabetes, chronic kidney disease,

and Parkinson’s almost doubled globally in that same timeframe and dementia related deaths

tripled (p. 2112).

Mortality from chronic conditions can be estimated by ranking the chronic condition-

related causes of mortality. The results of this methodology show that, in high-income

countries, around 75% of the population will die from a chronic illness, with a cancer-to-

noncancer ratio of 1: 2. (Gomez-Baptise, et al., 2012, p. 374)

In spite of the growing numbers of individuals with chronic diseases, health resources are

inadequate to cover care for individuals outside of institutions and care within institutions are

fiscally onerous (Roberts & Jackson, 2013, p. 2219). Accurate prognostication is one potential

tool where clinical decision-making (DM) can match the care needs of the individual to the

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location where one completes their end-of-life period (Croft, et al., 2015; Gomez-Baptise, et al.,

2012). Inaccurate prognostication can cause multiple transitional moves which increases

psychological stress on the individual and family (Eastman & Martin, 2011).

Prognostication

Prognostication is the anticipated prognosis of an individual based on foreseeing and

foretelling the course and outcome of a disease (Christakis, 2001, p. 19). In Palliative Care,

prognostication is foundational to clinical practice. Clinicians take their knowledge of the illness

and share this with the individual while also anticipating potential illness complications and

disability (Croft, et al., 2015; Downing, 2011, p. 76). Prognostication is important to health

professionals and their patients as it creates a care contract by which future treatment is either

sought or declined (Corkum, Viola, Veenema, Kruszelnicki, & Shadd, 2011; Croft, et al., 2015;

Glare & Sinclair, 2008; Twomey, O’Leary & O’Brien, 2008).

Prognostication assists patients in making decisions about legacy, estate planning,

relationships, and location of their end-of-life period (Downing, 2011, p. 78; Glare & Sinclair,

2008, p. 86). Prognostication guides survival estimates with or without interventions (Corkum et

al., 2011; Glare & Sinclair, 2008; Twomey, et al., 2008). A limited prognosis has been found to

be a strong factor in the requesting and receiving medical assistance in dying (MAiD), as one

criteria for MAiD is that death is “reasonably foreseeable” (Villavicencio-Chavez, et al., 2014).

Accurate prognostication is a skill that is complex and subject to unpredictable variables

that include the abilities of the clinician (Downing, 2011). Palliative Care clinicians understand

that inaccurate prognostication can negatively affect the dying experience. A patient with high

care needs and uncertain prognosis may be denied access to hospice and instead kept in acute

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care or moved into long-term care (Waldrop & Meeker, 2012; Welch, Miller, Martin, & Nanda,

2008).

In clinical practice, more often than with cancer patients, patients with chronic illnesses

are most likely excluded from hospice care because of uncertain prognosis (Waldrop & Meeker,

2012). Teno, Plotzke, Gozalo, and Mor (2014) found that 75% of patients discharged alive from

hospice were non-cancer patients who had improved clinically or had not fit hospice criteria at

the time of admission.

The benefits of accurate prognostication impact healthcare resources. Administrators

value accurate prognostication because it can guide utilization of inpatient beds, diagnostic tests,

access to intensive care, and staffing (Glare & Sinclair, 2008; Twomey, O’Leary, & O’Brien,

2008). Palliative Care clinicians may be aware of the fiscal importance of prognostication on the

health system however, it is the individual served on the front-line that are of primary concern.

Palliative Care clinicians serve individuals and families one at a time and not groups or

populations (Croft et al., 2015).

The task of prognostication

Glare et al. (2008) reported that predicting survival in patients with advanced illness is

often the least desired task for clinicians (p. 1147). Every Palliative Care clinician approaches

prognostication differently as there is not one standardized way of learning or guiding the

formulation of a prognosis (Clarke et al., 2009). Clinicians can access different models and tools

to education themselves such as the “Who Knows?” Ten steps to better Prognostication

(Downing, 2011). Clinicians use their experiential knowledge, the known history of the

individual’s disease trajectory with the assessed performance status, and biological markers to

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guide prognoses (Castillo, 2012; Timmermann, 2012). The order in which these factors are

considered are within the clinician’s preferences, however, the starting point begins with the

diagnosis of disease (Croft et al., 2015; Downing, 2011; Glare & Sinclair, 2008).

The performance status, which measures the physical functioning of the patient provides

important guidance to prognosis. Performance status measures physical function against

disability which has predictive value of therapy response and survival (Downing, Lynd,

Gallagher, & Hoens, 2011; Glare, 2011). Performance status tools used in Palliative Care

include: the Palliative Performance Scale (PPSv2) (Downing, 2006, pp. 120-121); the Karnofsky

Performance Scale (KPS), and the Eastern Cooperative Oncology Group Performance Status

(ECOG) (de Kock et al., 2013; Downing, 2011; Péus, Newcomb, & Hofer, 2013). The PPSv2

tool has been validated for cancer and non-cancer populations, unlike the KPS and ECOG which

are specific to oncology (Downing 2011; Ho, Lau, Downing, & Lesperance, 2008).

The performance status score provides the clinician with knowledge as to how extensive

the disease is impacting the patient on their daily functioning (Croft et al., 2015; Downing,

2009). The disease trajectory is important in prognosticating as two separate clinical populations

may be assigned the same score but will experience distinctly different and expected decline over

time (Amblàs-Novellas et al., 2016). Palliative Care clinicians will then use other observable

biological markers to improve the understanding of prognosis. These biological markers include

weight gain or loss, cachexia, edema, dyspnea, dysphagia, low albumin, and leukocytes

(Downing, 2011; Selby et al., 2011, p. 579).

The work of prognostication is a different experience for non-malignancies as compared

with malignant diseases (Croft et al., 2015). Some complicating factors for prognostication are

6

individuals with multiple co-morbid conditions, individuals with potentially reversible

intercurrent illness and or having a mixed trajectory (Pontin & Jordin, 2011). Palliative Care

clinicians may look to broader prognostic frameworks to augment the performance status tool

such as the Gold Standards Framework (GSF) Proactive Indicator Guidance (PIG) with which

attempt to address these complexities in prognostication (The Gold Standards Framework, 2013).

There are web-based prediction tools that can calculate an individual’s risk and predicted

survival using known diagnosis, lab tests, and performance scores such as Prognostigram® and

Prognostat® which generates estimation of survival for cancer patients (Glare & Sinclair, 2008;

(Miladinovic et al., 2013). Web-based prediction tools are not equally accessible across the care

sectors by front-line clinicians and as such the use of paper copy performance status tools are

more prevalent.

Palliative Care clinicians believe that predicting lifespan is important or very important in

practice (Corkum et al., 2011). Many clinicians, however, lack confidence with clinically

complex patients. Some of these clinicians will avoid prognosticating altogether for fear of

disappointing their patient and negatively impacting the therapeutic relationship (Chang, Datta-

Barua, McLaughlin, & Daly, 2014; Pontin & Jordan, 2011).

Furthermore, reluctance to prognosticate could be attributed to fearing collegial negative

opinion as being able to provide an accurate prognosis is considered a valued ability amongst

physicians and a measure of professional competency (Christakis, 1999, p. 53). Thus, there may

be added reluctance from the clinician to prognosticate with individuals with chronic illnesses

which may span many years, often require prognostic repetition, and a communicated reframing

as the progression of their disease occurs over time (Glare & Sinclair, 2008).

7

Relevance to Nursing

Do nurses prognosticate? Yes, although I have no literature to offer in support, I believe

from my experience as a nurse that nurses do prognosticate. Is prognostication by Nurses

approached and accomplished in the same way as a Physician? I would say this is not the case. I

believe there are distinctions based on my own clinical experiences in how the work of

prognostication operates uniquely for Nurses. This study addressed prognostic work from the

perspective of advanced practice nurses. It was beyond the scope of this study to compare the

practices of advanced practice nurses with physicians. This would be an area to consider for

future research.

Nurses, even PCN, have been given the diagnosis of the illness of the patient by a

Physician. Often the stage of the illness has been quantified by a Physician or medical

diagnostics which then additionally guides the Nurses’ work in articulating or putting this

information into lay terms for the patient and family (Adams, Bailey, Anderson, & Docherty,

2011). Additionally, I would suggest that the intent of the work of prognostication for nursing is

different than for medicine in that it is usually accomplished for the purposes of transitioning the

patient and family to a care location for their end-of-life period and for preparing for dying

(Eastman & Martin, 2011).

The suggested purposes of prognostication in medicine by Christakis (1999) are to guide

the choices of therapies and interventions or to convince patients to comply with suggested care

(p.48). He notes that prognostication can be used as a tool to manage patient anxiety by

decreasing uncertainty through knowledge management (p. 48). Prognostication is also

8

considered a means of evaluating one’s own professional acumen and that of colleagues in

medical decision making (p. 53).

The Study

I proposed that prognostication is a core skill for PCN and that there is a need for greater

inquiry into how PCN influenced and impacted the processes around prognostication within non-

malignant disease populations. The findings of this study will impact nursing knowledge, clinical

practice, patient outcomes, and guide future research.

While PCN have access to several validated tools to assist with their patient assessments

the processes around the prognostic decision making of individual PCN was unknown. This

research inquiry was framed around these unknown processes of nursing prognostication. The

principal research question was: “What is the theory that explains the process of prognostication

for individuals with life-limiting, non-malignant illness by advanced practice PCN?”

The goal of this study was to construct a theoretical model that could explain the

conceptualization and decision-making factors by which PCN prognosticated for non-malignant

illnesses. Constructivist grounded theory was well-suited for this study as it allowed a co-

construction of meaning from a variety of individual perspectives within the PCN shared practice

culture, values, and norms.

Advanced practice PCN undertake prognostication in their everyday practice in their

advance practice role in advocating for the physical needs, the psychosocial needs and the best

location of dying for their end-of-life patients (Canadian Hospice and Palliative Care Association

[CHPCA], 2009). Prognostication is considered important to the PCN clinician because it is

important to the patient and family.

9

Study Objectives

The following questions underpin the study objectives:

1. How do PCN perceive prognostication in chronic illness versus malignant illness?

2. How do PCN approach prognostication in practice?

3. What reasoning and decision-making factors frame PCN prognostication?

Research Approach

The approval for this study was obtained by the Conjoint Health Research Ethics Board

(CHREB) at the University of Calgary and was conducted in compliance with the Tri-Council

Policy Statement, second edition (TCPS2). The researcher studied the perceptions and

experiences of by eleven PCN in a palliative care program, across care sectors. Ten of the eleven

nurses were advanced practice nurses in consultant roles and one in a front-line home care

position. The PCN were all employed within the same Palliative Care Program as the researcher

and had a minimum of one year of full-time clinical experience. This ensured that the

participants would have relevant clinical experience in the tasks associated with prognosticating

in non-malignant illnesses.

Direct observation and in-depth semi-structured interviews were the methods of data

collection. The researcher recruited participants through three program managers who sent out an

invitation to participate through program group email strings. This ensured that my colleagues

would not feel coerced in participating. Those interested in participating contacted me via my

University email account and I met with each participant and ensured that written informed

10

consent for observation and interviewing was reviewed and obtained. Each participant was

informed that participation in the study was voluntary and that withdrawal was acceptable up to

the point of data analysis.

Data collection began with direct observation of the PCN by the researcher in the task of

prognosticating for a patient with a non-malignant illness. Consent from the patient or agent to

have the researcher present for the patient interaction was obtained by the PCN verbally and

without the researcher being present. The semi-structured interview followed the direct

observation. The findings from the observations and interviews formed the foundation for the

theory generation and subsequent recommendations for clinical practice.

Each participant was identified by an assigned pseudonym and all interviews were audio-

recorded and transcribed verbatim. The interviews were initially coded line-by-line and

compared with each other. The core categories were organized and provided the basis for the

conceptual categories as per the study’s conceptual framework. Field notes and memos of the

observations were coded and compared to each other to formulate the conceptual categories and

then compared to the interviews. Literature and theoretical sampling were employed to further

enhance the rigor of the findings. Saturation of the data was achieved.

Assumptions

There are three primary assumptions that were made regarding the study. First, that PCN

consider prognostication a core skill in the Nursing domain and is a common work task. Second,

that PCN consider prognostication for individual’s with non-malignant illnesses more difficult

than those with malignancies. Third, that prognostication includes a decision-making process

11

that advanced practice PCN employ to advocate resource allocation and care transitions for their

end-of-life patients and families.

The Researcher

I have worked in a dedicated Palliative Care position as a PCN with Alberta Health

Services for eight years. I have met with numerous individuals and families facing serious and

life-altering diagnoses. It has been my experience that patients, regardless of cultural

background, are intently interested in knowing how much time they have left to live. I have

witnessed the increased referrals for the chronically ill in the aged and have personally struggled

with the decision-making and articulating a prognosis to my patients.

In Canada, PCN serve integral roles in Hospice and Palliative Care Programs. The

Canadian Nurses Association has a 32 specialty competencies examination specific to the role of

Hospice and Palliative Care Nursing (Canadian Nurses Association [CNA], 2015). Competency

1.5b States: “The hospice palliative care nurse: Uses effective communication (e.g., presence,

empathy, reflective listening) to facilitate discussion and understanding with the person and

family about issues related to Prognosis” (CNA, 2015).

Advanced Practice Nurses (APN) are considered to hold unique opportunities in

observing potential clinical practice gaps and are encouraged to engage in research to generate

knowledge and incorporate the findings in their own practice settings (Staples, Ray, & Hannon,

2016, p. 110). The purpose of this research was to conceptualize and co-create theory utilizing

Constructivist grounded theory (CGT) methodology to illuminate the processes and experiences

of PCN in the work of prognostication for non-malignant illnesses. To date, no previous study

has been identified that solely covers the proposed topic.

12

The relational position of researcher in the inquiry is as a member of the group being

studied, which aligns with constructivist philosophy. Nature is perceived to be a mental construct

of individuals and together with others in social interactions (Lincoln & Guba, 1985, p. 86).

Ontological truth is a socially negotiated and the epistemology of reality is what is co-created

between the researcher and participants (Creswell, 2013, p. 759).

The theoretical results were a co-construction between researcher and participant and

becomes an interpretive portrayal of the researched world and not an exact picture of it

(Charmaz, 2006, p. 11). The ‘truths’ that are illuminated within one social group may not stand

as such in another. Truth is relative and bound in time and social contexts. The researcher, as part

of the group being studied, is never value-neutral nor an objective observer but rather an active

agent in explicating a theory and interpreting the phenomena based on shared beliefs, values, and

norms (Mir & Watson, 2000, p. 942).

Rationale and Significance

The rationale for this study came from the researcher’s desire to discover strategies for

PCN to use to prognosticate for individuals they serve. Accurate prognostication is highly

desirous for patients, families, and clinicians (Nelson et al., 2017). Prognostication can impact

chosen interventions and the individual’s experience of their end-of-life period (Nelson et al.,

2013). The learned experiences of PCN with prognosticating within the non-malignant disease

populations demonstrated a shaping of clinical decision-making. Theoretically sound, the

uncovered theory and framework should resonate with PCN groups in similar settings (Charmaz,

2006, p. 179).

13

What impact was realized with the greater understanding of advanced practice PCN

prognostication in chronic illnesses? The theoretical model of how advance practice PCN

approach prognostication has provided a foundational understanding of how this work is

operationalized in the clinical setting. The future aim of the study is to enhance advocacy for

end-of-life transitions for patients and their families faced with chronic illnesses and in

supporting clinical decision-making.

Definitions of Key Terms

The following key terms used throughout these chapters are presented with their

corresponding definitions for the reader’s awareness.

Advanced illness. When an individual with one or more conditions experiences a health

status that is compromised to the point of no longer responding to previous treatments along with

marked functional decline. This process continues until death (American Hospital Association

[AHP], 2012, p. 7).

Advanced Practice Nurse. Nurses working in advanced practice roles who have acquired

expert knowledge base, complex decision-making skills and clinical competencies for expanded

practice (International Council of Nurses, 2008).

Chronic disease. A disease that continues over a long period of time. Chronic disease

may be progressive and result in a state of disability or death (Mosby’s Medical Dictionary,

2016, p. 364).

End-of-life. A one to two year period of time of life remaining for individuals with life-

limiting illness (Izumi, Nagae, Sakurai, & Imamura, 2012, p. 119).

14

Illness (Disease) trajectory. The known pattern of decline of an illness over a timeframe

that can be mapped out towards death (Mead, Cowey, & Murray, 2013, p. 447).

Mortality. The state of being subject to death (Mosby’s Medical Dictionary, 2016, p.

1163).

Palliative Care. Palliative care is an approach that improves the quality of life of patients

and their families facing the problem associated with life-threatening illness, through the

prevention and relief of suffering by means of early identification and impeccable assessment

and treatment of pain and other problems, physical, psychosocial and spiritual (World Health

Organization [WHO], Definition of Palliative Care, nd).

Prognosis. The likely course of a disease or ailment (Mosby’s Medical Dictionary, 2017,

p. 1459).

Prognosticate. To make a prediction (Mosby’s Medical Dictionary, 2016, p. 1459).

Prognostication. The action of predicting life expectancy (Glare, & Sinclair, 2008, p. 85).

Overview of the Thesis

In this chapter, I presented an overview of the study, detailing the practice of Palliative

Care in Canada, the task of prognostication, the background to the problem, the rising prevalence

of chronic illnesses globally, the relevance to Palliative Care Nurses, and the purpose of this

study. Chapter two is the literature review in context of a CGT study. In chapter three I described

the methodology, methods, and procedures of the study. In chapter four I present the findings

and the theoretical model. In chapter five I present the findings in relation to the extant literature

15

and discussion of the proposed theory then share the strengths and limitations of the study. In the

final chapter, six, I present suggestions and recommendations for practice and research in future.

16

Chapter Two: Literature Review

In this chapter I discuss how Grounded theory methodology approaches the literature

review. Next, I outline the search methods employed and how the subsequent studies were

appraised. I then discuss the overview of themes that emerged from the review and noted gaps in

knowledge. Lastly, I present how this study addressed these gaps. During analysis, I returned to

the literature, which informed further theoretical sampling. The new literature became

foundational in the theory development and will be discussed in greater detail in chapter four.

Literature Review and Grounded Theory

Grounded theory (GT) also known as Classical (GT) is an inductive methodology that

generates theory from data comparison. The creators, Glaser and Strauss (1967, 1995, 1999, and

2008) prescribe the avoidance of a literature review prior to analysis. Glaser and Strauss (1967,

1995, 1999, and 2008) believe that the researcher must enter the literature after the analysis of

the data to preserve the authenticity of the emergence of findings (p. 37). Delaying the literature

review safeguards the results from the possible contamination of previous knowledge of the

phenomenon of study (Glaser & Holton, 2007, p. 58). Following analysis, Glaser views the

literature review as another source of data within Classical GT and one can use it to further

develop the theory (Walls, Parahoo & Fleming, 2010, p. 13).

Over time, with subsequent evolutions of GT, the role and purpose of the literature

review evolved (Giles, King & de Lacey, 2013, p. 30). Corbin and Strauss (2008) moved their

version of GT from an objectivist stance to one of pragmatism and recognized that all

researchers have personal and professional knowledge, making the Classical GT pure induction

goal unachievable (p. 36). Walls, Parahoo and Fleming (2010) believed that previous knowledge

17

is not necessarily a limitation but could be considered advantageous in that the researcher is

readily positioned to understand the participants in the field (p. 11). Corbin and Strauss believed

having an overfamiliarity with the literature could be detrimental for the researcher’s creativity

but believed if used correctly, the literature review could enhance conceptualization (Giles, King,

& de Lacey, 2013, pp. 30-31).

According to constructivist GT, the literature review achieves how one may situate the

work within existent literature (Charmaz, 2014, p. 307). Constructivist GT rejected the notion

that any researcher could claim to embody a ‘tabular rasa’, or ‘blank slate’ as suggested by

Glaserian GT (Charmaz, 2014, p. 306). Glaser and Strauss were both experts in their fields of

study when they developed GT (Walls, Parahoo, & Fleming, 2010, p. 11). Charmaz stated that

“completing a thorough literature review strengthens your argument and your credibility” (2014,

p. 308). Adhering to the constructivist GT for the study, I followed Charmaz’ direction in

utilizing the literature to clarify ideas, make comparisons, begin theoretical discussions, and

connect the work with other relevant studies (2014, p. 309).

Search Methods

A comprehensive computer-assisted search was completed using the databases:

Cumulative Index of Nursing and Allied Health Literature (CINAHL), PubMed, Excerpta

Medica Database (EMBASE), Ovid MEDLINE®, and PsycINFO. Search terms for palliative

care included: palliative care, end of life care, terminal care, dying, advanced illness and serious

illness. Search terms for Prognostication included: prognostication, prognosis and survival

estimate. Search terms for chronic disease included: chronic disease, chronic illness, long term

conditions, chronic conditions and chronically ill. Search terms for process included: process,

18

task and function. All of these terms were combined with and, then with Nursing, Nurses and

Nurse, using the Boolean operation to obtain relevant results (see Appendix B).

In order to be included in the review the studies had to address prognostication at end of

life for individuals with a chronic disease, nurses had to be a part of this process and the study

had to be published in English. The studies were then further restricted to fall within the year

range of January 2008 to November 2018. Reference lists from included articles were reviewed

for any additional applicable studies of interest.

Search Outcome and Quality Appraisal

The original search produced 416 articles (see Appendix A for literature review

flowchart). From these results, I removed duplicate articles and studies that were irrelevant to the

topic. Lastly, I reviewed each of the remaining abstracts in more detail and further excluded

articles based on the inclusion and exclusion criteria. A final sample of seventeen articles were

included in this review and were reflective of prognostication as a process that was inclusive of

chronic diseases. These articles were systematically appraised for quality by using the specialist

unit for review evidence (SURE) checklist (see Table 1 in Appendix C). Every study

demonstrated some limitations, however none were excluded from this review based on those

limitations.

Results

All selected articles were published within January of 2008 and November of 2016, there

were no articles captured in 2017. Ten articles used a qualitative research design (Clarkson et al.,

2012; Curtis et al., 2008; Gallagher et al., 2015; Hjelmfors, Strömberg, Friedrichsen,

Mårtensson, & Jaarsma, 2014; Pontin & Jordan, 2013; Reinke, Shannon, Engelberg, Young, &

19

Curtis, 2010; Waldrop & Rinfrette, 2009; Waldrop & Meeker, 2012; Welch et al., 2008). Two

articles were descriptive reviews of how clinicians can improve prognostication (Downing et al.,

2011; Kalowes, 2015). Three articles focused on the role of nurses in communicating prognosis

(Martin & Koesel, 2010; Milic et al., 2015; Newman, 2016). The remaining two articles were

quantitative studies (Clarke et al., 2009; Twomey et al., 2008).

The majority of the publications originated in America (Curtis et al., 2008; Kalowes,

2015; Martin & Koesel, 2010; Milic et al., 2015; Newman, 2016; Reinke et al., 2016; Waldrop &

Rinfrette, 2009; Waldrop & Meeker, 2012; Welch et al., 2008). Two originated in the United

Kingdom (Clarke et al., 2009; Pontin & Jordan, 2013), as well as two from Canada (Clarkson et

al., 2012; Downing et al., 2011). One article originated in Ireland (Twomey et al., 2008), and one

in Sweden (Hjelmfors et al., 2014). The remaining publication was an international study

representing the United Kingdom, Brazil, Germany, Ireland and Palestine (Gallagher et al.,

2015). A summary of the selected publications can be seen in Appendix D.

Analysis

On analysis and comparison of the selected publications there emerged in the literature

related and common themes which were: factors that impact prognostication, communicating

prognostic information, decision-making and the nursing role. Some articles following analysis

demonstrated more than one theme and were included in more than one category.

Factors that impact prognostication. There are three subthemes found in this category,

biological factors, the clinician’s knowledge and clinician behaviours. Biological factors include

diagnostic tests, laboratory values, and patient symptoms. Clinician knowledge includes

understanding performance status, disease trajectories and prognostic tools. Clinician behaviours

20

include confidence of prognostic skill, awareness that accurate prognosis is required to access

some patient services and the awareness of the tendency of clinicians to overestimate or

underestimate length of life remaining.

Biological factors that impact prognostication. The use of laboratory measures,

diagnostic tests and observing patient behaviours and symptom burden are all examples of

biological factors that Clinicians consider when approaching prognostication (Clarkson et al.,

2012; Downing et al., 2011).

Clinician knowledge. The Clinician’s knowledge of the patient’s illness, the history of the

disease and disease trajectory, utilizing prognostic tools and one’s experience and confidence

with the task of prognostication impacts future prognostication (Downing et al., 2011; Kalowes,

2015; Martin & Koesel, 2010; Pontin & Jordan, 2013; Waldrop & Meeker, 2012). The clinician

uses knowledge to educate others about the disease process, explain prognosis, and interpret

medical terms in addition to assessing the patient’s condition (Adams et al., 2011).

Clinician behaviors. Clinician behaviours can impact the work of prognostication. One

example of a clinician behavior that can impact prognostication would be having an awareness of

potential biases. For instance, if a clinician is aware that a time dependent prognosis is needed to

secure specific care services for their patient that could not be secured otherwise. Another

clinician behaviour would be if the clinician believed that the patient would lose trust in their

competency if the prognosis is unfavorable (Clarkson et al., 2012; Pontin & Jordan, 2013).

Studies have suggested there is a tendency of clinicians to overestimate length of life remaining

in patients with whom they share a strong relationship (Clarkson et al., 2012; Curtis et al., 2008).

In the quantitative studies, clinicians were found to be inaccurate in predicting prognosis within a

21

noted timeframe, demonstrating a tendency to underestimate survival in patients when prognosis

was believed to fall within the one to three month category (Clarke et al., 2009; Twomey et al.,

2008). Prognostication by clinicians has been shown to be inaccurate in spite of years of

experience (Clarke et al., 2009; Twomey et al., 2008). This may suggest that the other variables,

such as the clinician to patient relationship may have a stronger impact on prognostication than

clinician knowledge of the disease trajectory or clinician experience.

Communicating prognostic information. Communicating prognostic information to the

patient is thought to be a regular task for clinicians supporting individuals at end-of-life (Adams

et al., 2011; Curtis et al., 2008; Martin & Koesel, 2010; Milic et al., 2015; Newman, 2016;

Reinke et al., 2016). Communicating prognostic information was demonstrated to be framed in

uncertainty (Pontin & Jordan, 2013; Waldrop & Meeker, 2012).

Nurses reported feeling competent to communicate prognosis to their patients but many

are reluctant to do so (Hjelmfors et al., 2014). The majority (69%) of nurse participants believed

that the physician was responsible to disclosing prognosis (p.155). Identified barriers by nurses

in sharing prognosis with their patients included the unpredictable trajectory of their illness, a

fear of taking away the patient’s hope, inadequate time for communication, and a lack of skill in

communicating prognosis (p. 154).

Communicating prognostic information to patients is considered important to quality in

end-of-life care (Adams et al., 2011; Kalowes, 2015). Studies demonstrated that nurses function

as an interpreter of prognostic information between the physician and patient, providing clarity

about the disease process (Adams et al., 2011). Disagreement between physicians and nurses

22

about disease management in patients may hinder nurses discussing prognosis with patients

(Hjelmfors, 2014).

Decision-making. Decision-making is considered to be a part of the process of

prognostication by clinicians and supports individuals decide care and location of care (Adams et

al., 2011; Pontin & Jordan, 2013; Waldrop & Meeker, 2012). The work of prognostication is

often a shared decision between more than one clinician and with the input of the patient (Adams

et al., 2011; Gallagher et al., 2015; Kalowes, 2015; Pontin & Jordan, 2013; Reinke et al., 2016).

Prognostication is framed within time and the characteristics of the terminal condition (Waldrop

& Rinfrette, 2009; Waldrop & Meeker, 2012; Welch et al., 2008).

The nursing role. The nursing role was discussed in a variety of ways in the articles

analyzed. The most prevalent role was that of an advocate (Adams et al., 2011; Kalowes, 2015;

Newman, 2016). As advocate, the nurse provides clear information about clinical status,

prognosis, care needs, and interprets medical information and the potential implications about

decision-making (Adams et al., 2011; Kalowes, 2015; Newman, 2016). Next is the nursing role

of supporter which included the concept of nurses building rapport, building trusting

relationships with patients and families and providing emotional space and comfort when needed

(Adams et al., 2011; Gallagher et al., 2015; Reinke et al., 2016).

Nurses use their relationships with patients in order to facilitate decision-making between

patients and the healthcare team (Adams et al., 2011; Martin & Koesel, 2010; Milic et al., 2015;

Newman, 2016). One article purported that nurses have a responsibility to address prognosis as

patients and families look to nurses to interpret, reinforce understanding, and provide emotional

support (Milic et al., 2015, p. e63).

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Limitations

Of the four articles that identified grounded theory only one formulated a theory

(Gallagher et al., 2015). A fifth article identified itself as qualitative research, interpretive design

using focus group interview as method (Pontin & Jordan, 2013). These four articles had thematic

findings from a grounded theory approach (Clarkson et al., 2012; Curtis et al., 2008; Pontin &

Jordan, 2013; Reinke et al., 2016). The use of thick description was present in all and all but one

study used more than one investigator in the process of coding and analysis (Pontin & Jordan,

2013). Curtis et al. (2008) used visual models in their study but did not explain the content

validity. All data from these studies were interviews only, there was no attempt for triangulation.

There were three articles of differing qualitative methods which sought to understand the

factors that influence hospice referral or timing of hospice placement (Waldrop & Rinfrette,

2009; Waldrop & Meeker, 2012; Welch et al., 2008). One study was retrospective and dependent

on the memory of staff about decedent patients (Welch et al., 2008).

Two articles were literature reviews (Adams et al., 2011; Newman, 2016). Not all studies

reviewed by Adams et al. (2011) were solely about nurses or nursing prognostication, most

studies were retrospective designs and also included cancer diagnoses. The main focus of this

literature review was on nursing end-of-life roles in decision-making. The integrated review and

synthesis of the literature by Newman (2016) focussed on the disclosure of prognostic

information within the role of nursing, rather than on the process of prognostication.

Two articles were quantitative studies (Clarke et al., 2009; Twomey et al., 2008) and one

study was mixed (Hjelmfors et al., 2014). The Clarke, et al. (2009) study limitations were that

24

they used life insurance industry actuarial methods over actual survival data and hypothetical

patient scenarios.

The study by Twomey, et al. (2008) attempted to compare the abilities of five

professional groups in their estimates of survival for patients within 48 hours of admittance to

hospice. The number of clinical assessments for survival prediction by professional category was

not equal and the prediction categories were unequal in lengths of time. This may explain why

some clinicians were considered more accurate in their prognostication over others. Additionally,

the hospice patients were admitted at different points in their trajectory of illness.

Hjelmfors, et al. (2014) study limitations included the researchers creating the

questionnaire given to the participants from a sexual counselling questionnaire and thus using a

tool without established validation as well as having a sole focus on nurses working with heart

failure patients.

The remaining four articles were focused on educating about prognostic tools, the

characteristics of decline and promoting effective communication with patients and families

(Downing et al., 2011; Kalowes, 2015; Martin & Koesel, 2010; Milic et al., 2015). Three of

these four were specifically addressing nursing working in Intensive Care Units (Kalowes, 2015;

Martin & Koesel, 2010; Milic et al., 2015).

Discussion

The three themes that emerged from the analysis of the literature about the elements of

prognostication are all interconnected. These are: factors that impact prognostication,

communicating prognostic information and decision-making. In order to prognosticate a

25

clinician needs to be able to understand biological measures, disease history, and the patient’s

clinical status and then be able to conceptualize the expected course in future, and communicate

this back to the patient in order to make care decisions.

What is new within this literature review in regards to the topic of prognostication is the

recognition that nurses fulfill multidimensional roles in this end-of-life work. Nurses function in

active ways in the prognostication for patients by using clinical knowledge, experience,

communication, advocacy and interpersonal relationships. A noted limitation in the literature in

regards to nursing roles is that the majority of studies were retrospective in nature and not

observational. Of interest, previous literature, before 1995 did not fully explore or express the

role of nurses in end-of-life decision-making (Adams et al., 2011).

Summary

Key learning in the literature demonstrates that accurate prognostication is desired by

health care teams and the individuals they serve (Corkum et al., 2011; Glare & Sinclair, 2008;

Twomey et al., 2008). Policy makers and health leaders value accurate prognostication to guide

fiscally sound decisions and resource allocation which includes the right location of care (Clarke

et al., 2009; Glare & Sinclair, 2008; Twomey et al., 2008).

Accurate prognostication can guide personal and medical decisions for individuals,

helping them decide which treatments to pursue and which to decline (Corkum et al., 2011;

Glare & Sinclair, 2008; Twomey et al., 2008). Predicting length of life remaining in our patients

is often dreaded by clinicians (Glare et al., 2008). Clarke (2009) regarded the lack of a

standardized way to approach prognostication makes the clinician unprepared for the task.

26

Adams et al., 2011 suggested that clinicians must maximize all available knowledge for accurate

prognostication such as personal experience, performance tools, biological measures, and

personal decision-making abilities.

Prognostic accuracy diminishes as the length of relationship increases between the patient

and clinician (Glare & Sinclair, 2008). The horizon effect in clinical practice and supported in the

literature review revealed that all disciplines improve their prognostic accuracy the closer the

individual is to death (Selby, et al., 2011).

All clinicians that prognosticate regardless of discipline, hold no statistically superiority

to another in accuracy (Clarke et al., 2009; Twomey et al., 2008).

The Study and Addressing the Gaps

The research question is: “What is the theory that explains the process of prognostication

for individuals with life-limiting, non-malignant illness by Palliative Care Nurses” (Ferguson,

2015)? The goal of this study was to co-construct a theory that described and explained the

clinical reasoning processes by which advanced practice PCN conceptualized prognosis for

individuals at end-of-life with non-malignant illnesses. A Constructivist grounded theory (CGT)

methodology was employed to provide the foundation of understanding of the social group and

seeks to discover the “what” and the “how” but also the “why” (Charmaz, 2014).

The clinical and judgement processes of advanced practice PCN are shaped by their own

culture, norms, rules, values, and care contexts. The study identified advanced practice PCN

understanding of prognostication and their clinical reasoning and judgement processes in their

work of prognosticating for individuals at end-of-life with non-malignant illnesses.

27

Significance of the Study

The need for accurate prognostication will continue to grow as the global projections of

mortality and disease burden escalate and increase in prevalence for cancers and chronic diseases

within an aging population (Salomon et al., 2012; Gomez-Baptise et al., 2012).

Prognostication informs care conversations, care decisions such as treatment options, and

end-of-life care locations (Glare & Sinclair, 2008). Prognostication impacts resource utilization

in health care as it has the potential to guide appropriate interventions and care transitions

(Roberts & Jackson, 2013). Advanced practice PCN are well situated to continue the work of

prognosticating in the accessing of hospice care for all individuals at end-of-life but accurate

prognosis for non-cancer illnesses will continue to preoccupy clinicians.

Prognosticating is a significant challenge for PCN to accomplish with accuracy given the

number of identifiable factors including diagnosis, performance status, disease trajectories, age,

co-morbid conditions, symptoms, quality of life scores, clinician’s prediction of survival and

biological markers (Glare & Sinclair, 2008; Glare et al., 2008).

This study presented an opportunity to develop new Nursing knowledge, given the

potential of creating the awareness of how advanced practice PCN experience the process of

prognostication within the non-malignant end-of-life populations. The benefits of accurate

prognostication, such as informed decision-making by individuals at end-of-life and choice

around care setting for all illness trajectories will compel continued striving to understand the

processes and experiences of advance practice PCN.

In the next chapter I present the methodological underpinning used for the research

inquiry. I will present an overview of grounded theory (GT) and its subsequent iterations and

28

why the choice of the constructivist version of GT was the appropriate fit for this study. I

describe the methods of GT used in the study and how the study was conducted.

29

Chapter Three: The Methodology

The methodology and methods chosen to design the foundation for one’s research

requires consideration of the theoretical perspectives and assumptions about reality (Crotty,

2010, p. 3). Elemental in building this foundation is understanding what methodologies and

methods we intend to use, and how we intend to justify and answer the purpose of the research

questions (Crotty, 2010, p. 2). The epistemology, the theory of knowledge, provides the

philosophical guidance as to what kinds of knowledge are possible and how one ensures it is

sufficient and trustworthy (Crotty, 2010, p. 3). Together these elements build one’s philosophical

stance, informing our methodology and giving us the logic or context to which our research is

grounded (Annells, 1996; Crotty, 2010, p. 3).

Research Design

My research foundation was based on a constructivist epistemology within a symbolic

interactionism theoretical framework and a constructivist grounded theory methodology (CGT).

The primary methods that I used for data collection were participant observation and semi-

structured interviews (Crotty, 2010, p. 5). The adoption of the CGT methodology allowed me to

understand and co-construct and theorize about the processes and experiences of prognostication

of PCN in non-malignant illnesses and acknowledge my participation and experience as a fellow

PCN (Charmaz, 2014). To restate, my question was: “What is the theory that explains the

process of prognostication for individuals with life-limiting, non-malignant illness by Palliative

Care Nurses?”

Adopting CGT is appropriate to examine this question because there is limited

understanding regarding the prognostication process of PCN. Using CGT, the goal was to co-

30

construct a theoretical concept model of prognostication which would inform future

development, and implementation of guidelines for nursing and other palliative care

interdisciplinary team members. I chose CGT to acknowledge the relativity and subjectivity

involved in this research.

Next, I present an overview of the philosophical underpinnings of grounded theory and

the subsequent iterations. I discuss how the ontological and epistemological position of the

researcher informed the choice of CGT. I will further outline the steps of recruitment, data

collection, data storage, data analysis and memo writing. Finally, I will explain the vital

importance of the study evaluation in ensuring rigor, accuracy, and reflexivity in the theory

conceptualization.

Philosophical Context: Pragmatism

Symbolic Interactionism is based in the pragmatist tradition attributed to pragmatic

philosopher C.S. Peirce but developed by John Dewey and William James in the early 20th

century (Charmaz, 2014; McCready, 2010). Pragmatism is a philosophical tradition with many

forms but perceives reality as fluid, changing, and open to multiple interpretations (Bryant &

Charmaz, 2007; Creswell, 2013; McCready, 2010). Pragmatism asserts that truth is relative,

temporary, and useful (Creswell, 2013).

Pragmatism is not bound to any one philosophy or reality and it encourages the

researcher explore multiple approaches and analyses (Creswell, 2013, p. 822). Truth and reality

are situated in temporal contexts and are based on external and internal constructions that are

influenced by the social, historical, and political realms (p. 822). Pragmatism informs symbolic

31

interactionism which assumes that society, reality, and the self are constructed through

interaction (Charmaz, 2006, p. 7).

These interactions are reliant on language and communication and these interactions are

by nature changing and open to interpretation (Charmaz, 2006, p. 7). PCN actions are based on

symbolic meanings in their specific context bound by their social norms and values in the

clinical setting. PCN have a shared language by which they interpret their experiences and

establish understanding.

Theoretical Context: Symbolic Interactionism

Symbolic Interactionism (SI), attributed to W.I. Thomas and Charles Cooley in the

1920s, and further developed by George Herbert Mead in the 1960s, is a theoretical perspective

that focuses on the relationship between individuals and society through language and symbols

(Annells, 1996; Charmaz, 2014; Milliken & Schreiber, 2012). There are three main assumptions

in SI: individuals construct selves, society, and reality through interaction and interpretation

(Charmaz, 2014, p. 610). The individual ‘self’ is defined through social relations and interactions

through experiential transactions with other individuals in an environment (Charmaz, 2014;

Mead, 1962, p. 225). Individuals then further direct and modify meanings in social exchanges

(Annells, 1996, p. 381).

Shared meaning, or ‘joint action,’ is the basis of culture as individuals change their

actions based on interpretation or on the anticipated responses of others (Milliken & Schreiber,

2012). It is important to learn the meaning behind action as individuals can be understood by

looking past their behaviors to the meaning that drives it (Milliken & Schreiber, 2012). Charmaz

32

(2014) suggested that SI encourages the researcher to learn about a world in a specific time and

place through people’s troubles, actions, and accomplishments (p. 262).

The tenets of SI interaction, as defined by Mead, is to enter the ‘attitudes of the

community’ in which we as individuals learn to adopt the standpoint of others (Crotty, 2010, p.

74). To adopt the standpoint of others means to accurately reflect and record the observations of

the PCN in the study of non-cancer prognostication with their meanings as well as my own

(Crotty, 2010, p. 75). This joint interaction is dependent on verbal and nonverbal language and

meanings (Charmaz, 2014, p. 266).

Interactions in the community are continual processes occurring between the individual,

the collective, and the environment (Milliken & Schreiber, 2012). The community reflects the

relativity of many standpoints and the subjectivity of the individual acting in their social worlds

(Charmaz, 2014, p. 269). This aligns well with the interpretation of a studied phenomenon and

the need for members’ check-in in CGT (Bryant & Charmaz, 2007; Charmaz, 2006; Charmaz,

2014; Higginbottom & Lauridsen, 2014).

My own conceptualization and representation of the constructed theorizing may not

adequately resonate with the participants underlying beliefs about prognostication and the

meanings behind the behaviour may remain elusive (Charmaz, 2006, p. 144). Findings are

subjective and in context to this researcher’s history, time, and PCN culture (Charmaz, 2006;

Charmaz, 2014; Creswell, 2013). Symbolic interactionism helped frame the theoretical

construction of the grounded theory (GT) as SI focuses on meaning-making and the actions of

the PCN in the work of prognostication and GT focuses on the process. Jointly, SI and GT were

compatible in answering the research question (Charmaz, 2006).

33

Social Constructivism

Social constructivism, also referred to as constructivism and interpretivism, is a social

scientific perspective and worldview that defines realities (Creswell, 2013, p. 749). Prawat

(1999) identified three contrasting versions of social constructivism which share a common set

of assumptions but differ in how they view the mind-world connection (p. 255). The mind-world

connection of the social constructivism version that aligns with GT is attributed to Peirce and

Dewey and later by Vygotsky (Charmaz, 2014; Prawat, 1999). This version views knowing and

learning as embedded in social life and does not assume an overly individualistic, subjectivist

stance (Charmaz, 2014, p. 14).

In constructivism, nature is a construct of the mind for the individual and collectively

with others, through social interactions (Lincoln & Guba, 1985, p. 86). Thus, the ontology of

constructivism is relativist, as the truth about reality is socially negotiated (Appleton & King,

2002; Creswell, 2010, p. 759). Similarly, the epistemology of constructivism, or how one knows

what can be known and constitutes reality, is subjectivist in a nature and a co-creation between

the researcher and participants (Creswell, 2010, p. 759).

A constructivist believes that anything that is and can be known is first created in the

mind of the knower (Crotty, 2010, p. 58). The ontology and epistemology of CGT are entwined

as the knower cannot be separated from what can be known in the co-construction of reality

(Guba & Lincoln, 2005, p. 195). Unlike constructionism, which denies individuals can derive

meaning objectively, constructivists believe it is possible for individuals to derive meaning from

objects in the environment as well as from social interactions (Crotty, 2010, p. 54).

34

In constructivism, the researcher desires to know and interpret the meanings of others

about the world in which they live and work (Appleton & King, 2002; Creswell, 2013, p. 749).

Constructivist research begins with an experience of interest, then the researcher enters the

community where the phenomena of study resides and gathers numerous views of it (Charmaz,

2006, p. 187). Subjective meanings are developed through complex analysis and are tied to

social and historical contexts (Charmaz, 2006; Creswell, 2013).

Meanings come through social constructions, values, and norms (Appleton & King, 2002;

Creswell, 2013). The researcher is not a neutral observer. Rather, researchers are aware and

acknowledge their own life experiences in how it shapes their interpretations (Charmaz, 2014, p.

13; Mir & Watson, 2000, p. 942). Constructivists declare their explanation of the experience

itself is a construction (Charmaz, 2006, p. 187). This perspective assumes that the researcher and

participants co-construct reality together (Charmaz, 2014, p. 14; Mir & Watson, 2000, p. 942).

Rationale for a Constructivist Version of GT

GT methodology, a qualitative research approach, is widely used across disciplines and

subject areas and has over time evolved into three distinct branches (Bryant & Charmaz, 2007).

The great appeal of GT to researchers is that each version offers a strong framework for

systematic analysis yet with different ontological and epistemological perspectives

(Higginbottom & Lauridsen, 2014).

Choosing which type of GT to employ in research is related to the researcher’s

assumptions underpinning their beliefs about reality inclusive of their definition of theory (Mills,

Bonner, & Francis, 2006). It is vital to understand these assumptions to maintain methodological

congruence and credibility in the research design (Mills et al., 2006).

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The following section will provide a historical overview and evolution of grounded

theory (GT) from its classical roots to the constructivist version attributed to Charmaz (CGT). I

will explain how the different versions of GT define theory and the anticipated challenges I faced

in the analysis of theorizing Palliative Care Nurses (PCN) prognostication.

Classical/Glaserian GT. The dominant research during the 1960s were quantitative

methodologies following a positivist paradigm (Charmaz, 2014). Quantitative research limited

the ability to understand human experiences and processes as it considered only variables that

could be explained or measured in a deductive manner to predict and control (Higginbottom &

Lauridsen, 2014). It was a time when research was spent refining quantitative instruments but

rarely produced new theory (Charmaz, 2014).

The seminal work of GT was developed by two sociologists, Barney Glaser and Anselm

Strauss, in 1967. The intent of GT was to provide an alternative approach to the prevalent

verification research tradition of the time (Jeon, 2004; Mills et al., 2006). GT focuses on

developing theory through close-up contact with the real world (Creswell, 2013; Streubert &

Rinaldi-Carpenter, 2011). GT does not start from existing theory, but rather it is an inductive

approach to discover the theory and phenomena that impacts people and society (Higginbottom

& Lauridsen, 2014; Schreiber & Stern, 2001; Strauss & Corbin, 1994).

The underlying premise of GT is that the proposed analytic approach could generate theory and

explain real world social processes in a systematic and practical way (Birks & Mills, 2011;

Glaser & Strauss, 1967; Hunter, Murphy, Grealish, Casey, & Keady, 2011). The intent of Glaser

and Strauss (1967) was to move qualitative research beyond description and into theory

conceptualization (Walker & Myrick, 2006).

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Classical GT is philosophically considered to be realist in ontology and post-positivist in

epistemology, although Glaser never disclosed a philosophical underpinning (Birks & Mills,

2011). Philosophically, Classical GT fits a critical realism and post-positivist paradigm, based on

the language Glaser created to explain the GT methods (Annells, 1996; Charmaz, 2014). In

developing GT, Glaser and Strauss successfully brought two contrasting theoretical perspectives

approaches in Sociology, positivism and pragmatism (Bryant & Charmaz, 2007; Charmaz, 2014;

Walker & Myrick, 2006).

Classical GT holds the researcher in a neutral, independent and objective stance in

relation to the research participants (Hall, Griffiths & McKenna, 2013). The theory that emerges

from the data is not forced by the researcher. Rather, the theory will appear with the rigorous

analytic comparison (Glaser & Strauss, 2008). A researcher using the Classical GT approach

will not undertake an initial literature review because this could bias and contaminate the

emergence of objective truths, suggesting that the researcher may force categories based on

learned theories (Thornberg, 2012).

GT has the following features: the simultaneous involvement with data collection and

analysis, constructing analytic codes and categories from data and not from preconceived ideas

or theories (Birks & Mills, 2010; Charmaz, 2014). Employing the constant comparison method

at every analytic stage will advance theory development using memo-writing to elaborate and

define category relationships and identify gaps (Jeon, 2004). Lastly, sampling is aimed towards

theory construction only and is not meant to represent a population (Jeon, 2004). In GT, the

literature search follows the independent analysis (Thornberg, 2012).

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Straussian GT. It was Anselm Strauss, a sociologist from Chicago, who invited Barney

Glaser to join him in his research on the experience of dying that led to the creation of the GT

methodology (Birks & Mills, 2011). Although much of the basic principles of GT are credited to

Glaser, Strauss’ pragmatic background influenced GT in that the focus was not left entirely on

structure and rigor (Shklarov, 2010). Strauss believed process was of greater import than

structure (Charmaz, 2014). His focus was more on the action of human beings who he

considered to be active agents in their worlds and who reflected social meanings through

language (Charmaz, 2014).

Strauss later wrote that GT adhered to the philosophical traditions of symbolic

interactionism and pragmatism (Birks & Mills, 2011). Glaser wanted to elevate GT to being

above a philosophy to maximize its usefulness to social researchers. However, all social research

has the components of philosophy, methodology, and methods (Birks & Mills, 2010).

Strauss’ GT diverged from the Classical form in the 1980s toward a version of GT that focused

on verification, while still adhering to the original principles of being inductive and an iterative

approach (Charmaz, 2014). His co-developer, Juliet Corbin, favored applying more step-by-step

techniques for the researcher to follow, which was of interest to many because the original GT

lacked any illustration of how to translate process into practice (Hunter et al., 2011;

Higginbottom & Lauridsen, 2014).

The most noted difference between Classical and Straussian GT is the addition of axial

coding which is an added step meant to encourage the researcher to consider the context

surrounding the core categories (Kendall, 1999). Glaser objected to this, suggesting that this

additional step forces the categories based on preconceived ideas (Charmaz, 2014).

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Constructivist grounded theory (CGT). Kathy Charmaz is credited with the next

iteration of GT, the constructivist grounded theory. Charmaz, a sociologist, studied with both

Barney Glaser and Anselm Strauss. Philosophically, Charmaz aligns closer to Strauss than

Glaser, which is toward symbolic interactionism. However, she is more relativist than Strauss

who leans more towards realism (Charmaz, 2014, p. 17). Charmazian GT adopts the methods of

the former GT without adhering to earlier assumptions (Charmaz, 2014). “I assume that neither

data nor theories are discovered. Rather, we are part of the world we study and the data we

collect” (Charmaz, 2014, p. 17). Although it adopts the inductive, comparative, and emergent

approach of classic GT, the constructivist approach highlights flexibility within GT by

acknowledging relativity, and subjectivity (Charmaz, 2014). Subjectivism rejects the idea of one

external or objective truth and instead, asserts that people “construct the realities in which they

participate” (Charmaz, 2014, p. 342). From this perspective, as the researcher I could not be

completely objective; I could not separate myself and my experiences from this research. I

acknowledged that an interrelationship existed between the researcher and the participants

(Charmaz, 2014; Higginbottom & Lauridsen, 2014). I acknowledged that the emergent truths and

theorizing was based on the interpretation of the data through the lens of an advanced practice

PCN.

A CGT assumes that the products of the data analysis are social constructions situated in

time, place, culture, and situation (Charmaz, 2006, p. 130). Constructivism aims at an

interpretive understanding of participant’s meaning (Creswell, 2013; Guba & Lincoln, 2005).

The goal is to gain a deep understanding of meanings behind the co-construction (Appleton &

King, 2002; Creswell, 2013). A constructivist recognizes that one explanation of phenomena of

39

study may not be achievable and many viewpoints may require separate illustration (Charmaz,

2014). Therefore, this research was informed by a constructivist theoretical framework allowing

me, the researcher the ability to regard the social realities from the PCN perspective (Crotty,

2010, p. 3).

Due to these epistemological and ontological differences, the resulting theorizing that

emerges in CGT is fundamentally different from classic GT. In the classic version, the generated

theory is discovered by the researcher, implying the researcher is independent from the data

(Glaser & Strauss, 1967), whereas in CGT, the emergent theorizing of actions became a co-

construction between the participants and the researcher (Charmaz, 2014; Higginbottom &

Lauridsen, 2014). Theorizing is a studying of actions, an interpretive practice that can reveal

processes at a collective level (Charmaz, 2014).

Theory in contrast to theorizing seeks to find causes and explanations to emphasise

generality and universality (Charmaz, 2014, p. 229). Theorizing seeks to learn the relational

linking of what people do into how they do it as a contingent relationship and why they do it

(Charmaz, 2014, p. 228).

Methods

Sampling and Recruitment

The participants consisted of a convenience sampling of PCN employed within the

Palliative Care Program in Alberta Health Services. The inclusion criteria was nurses who were

currently working as PCN with a minimum of one year full time experience in the role.

Theoretical sampling was also utilized to refine the early themes and concepts which emerged

during analysis to achieve saturation (Charmaz, 2014, p. 192). Theoretical sampling is the

40

strategy of gathering more data to elaborate and refine categories when one’s current categories

are intriguing but incomplete (Charmaz, 2014, p. 192). The categories and subcategories were

integrated to form a theoretical model. This model, the final product of the study, explains the

central phenomena and factors of the data (Charmaz, 2014, p. 305).

The research sample included 11 PCN, none of which were male. Ten worked in

advanced practice consultant roles and one in a front-line position. All were current and active in

their employment with the Palliative Care Program. The following parameters demonstrated

differences: years of experience in palliative care, level of education attained and participant age.

The majority of the participants had greater than 20 years of palliative care experience and had

achieved a Master’s degree as their highest level of education. The average length of palliative

care experience was 14 years. One participant had achieved a PhD and one held a Bachelor’s

degree. Five participants were ‘Baby Boomers’, four were ‘Generation X’ and two were

‘Millennial’.

To facilitate the recruitment I approached the three managers responsible for the PCN

programs in the Calgary Zone and requested an invitation be sent via the secured group email

strings. Included in the email was a participant poster, a synopsis of my research and contact

information with which individuals could reach me.

Data Collection

For this study, preliminary data analysis began following the initial gathering phase of

data collection (Sandelowski, 1995, p. 372). The primary sources of data were direct observation

of PCN followed by unstructured interviews, field notes, and memoing. I deliberately chose not

to interview PCN in a group setting as I believed that this may have inhibited responses of the

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individual experiences and could have generated responses reflective of perceptions that reflect

prescribed attitudes of the community (Mead as cited in Crotty, 2010, p. 74).

One face-to face unstructured interview was completed with each participant (Interview

Guide, Appendix E). The length of the interviews varied from 30 minutes to 90 minutes in

duration. Participants agreed to a second interview but this was not deemed necessary as the

responses in the initial interview were thorough. Following written consent, identical warm-up

questions were used to initiate the interviewing process with a review of their rights as a

participant.

Materials. Materials for my study included a voice recorder to record the interview

component of my data collection. I purchased a computer application called Sound Organizer®

with which I could manipulate the speed of the recording in order to capture all of the

conversation in the process of transcription. Sound Organizer® is password protected for safe

and ethical storage and additionally allows the researcher to access the recording for future

reference and re-listening. A journal notebook and pen was used to capture field notes,

observations and memos. Microsoft office® products was used to create interview guides and

information documents to guide the expectations and procedures for the researcher and

participant.

Ethics procedures. I received approval from the University of Calgary Conjoint

Health Research Ethics Board on May 12, 2016, ID REB16-0401. Alberta Heath Services

approval was immediately applied for but permission to proceed with data collection was

delayed due to a new and additional approval process for clinical research and subsequently AHS

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permission was not granted until November 21, 2016. A renewal application for ID REB 16-

0401 was required and was granted April 30, 2017.

In terms of ethics and recruitment, I solicited PCN participants through internal AHS

email string. I sent my invitation email to the three Program Managers to forward to all PCN

with the background and rationale for the study. Once individuals declared their interest, I sent

them the formal consent documents to complete with the logistical information about setting up

meeting times. The process of obtaining written consent was completed with the participants to

establish informed consent and to choose pseudonyms to protect their identity.

To maintain privacy and confidentiality participants’ names have been changed to

pseudonyms. Only I know whose identity matches to each pseudonym. To keep this data safe

and secure, I kept all data electronically stored with a password and encryption (Loiselle &

Profetto-McGrath, 2011, p. 81). Participants expect researchers to keep their information secure

and confidential, even though informed consent allows the participants to withdraw from the

study at any time (Loiselle & Profetto-McGrath, 2011, p. 79).

The selection process for the potential candidates is demonstrative of purposive sampling,

which means the participants were selected from the PCN pool of AHS nurses who do the work

of prognostication (Loiselle, & Profetto-McGrath, 2011, p. 211). The total number of PCN in the

Calgary Zone is approximately 65 nurses. The targeted number of participants through the

purposive sampling was approximately 65 nurses, in order to garner a generation and uptake of

ten to fifteen participants.

Observation & interview procedure. Preparation for the observation and interview

process began with obtaining ethics approval and permission from AHS leadership to request

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access to participants and to perform observations at the work site. Observation did not hinder

the work of the PCN as this was part of their daily assigned work. Interviews were booked on the

PCN’s own time to minimize disruption to the clinical demands during work hours. I included

time to explain the purpose of the interview, the aspect of anonymity, confidentiality, consent

and what was to happen to the findings (Ryan, Coughlan, & Cronin, 2009, p. 311).

Richards and Morse (2013) presented the importance of having a quiet, private setting

where the researcher can be alone with the participant without threat of being interrupted by cell

phones, pagers or other sounds (Richards & Morse, 2013, p. 126). Corbin and Morse (2003)

described the home environment as being ideal for interviewing because it creates a stance of

friendship between the interviewer and interviewee (Corbin & Morse, 2003, p. 338). I let the

participants dictate the locations of the interviews for their convenience and found most chose a

locale outside of work property.

I found it practical to prepare a paper outline of procedures to act as a general guide for

the interview. This added structure ensured that there was no difficulty in remembering to review

important concepts such as confidentiality and the ability of the interviewee to stop the process at

any time (Ryan et al., 2009, p. 311). Memoing about the observations were completed before the

interview to provide future contextual analysis as “memo-writing provides a space to become

actively engaged in your materials, to develop your ideas, and to fine-tune your subsequent data-

gathering” (Charmaz, 2006, p. 72). When the interviews were completed a verbatim transcription

of each recorded interview was done as the initial steps in data analysis and GT coding (Ryan et

al., 2009, p. 312).

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Instrumentation. The primary tools that was employed in the GT process was

unstructured interviews with participants, direct observation, memo writing, coding,

diagramming and field notes (Chenitz, & Swanson, 1986, p. 67). Direct observations of the

participants in their contrasting settings performing the process of patient prognostication was

also undertaken (Chenitz & Swanson, 1986, p. 87).

Data collection. GT uses many different types of methods by which to gather data such

as interviews, memos, field notes, formal documents, journals and videos (Corbin & Strauss,

2010, p. 27). The researcher begins by collecting data and finishes by writing the analysis while

reflecting on the entire process (Charmaz, 2006, p. 11). I collected data through interviews,

memo writing, and field notes and through direct overt observation of the processes of

prognostication of the PCN (Chenitz & Swanson, 1986, p. 53). Having more than one data

source provided a foundation for diversity and provided the opportunity for the development of a

strong theory (Chenitz & Swanson, 1986, p. 152). I observed all participants before their

interview.

From the types of interviews that could be employed, namely the structured, semi-

structured or unstructured, I chose the unstructured interview approach. Using unstructured

interviewing served a dual purpose. Unstructured interviews allow the interviewer to ask the

participants what questions they should be asking as well as be giving the answer to the

questions asked (Lincoln & Guba, 1985, p. 269). Engaging in genuine conversations with the

interviewees about the topic of prognosticating within non-malignant populations, the

unstructured approach allowed the use of broad open-ended questions to be utilized (Ryan et al.,

2009, p. 310). “Unstructured interviews are most appropriately used in studies where the

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researcher seeks to learn primarily from respondents what matters or how procedures are

understood” (Richards & Morse, 2013, p. 126).

Ryan, et al. (2009) emphasized the importance of “letting the interviewee talk,

uninterrupted at their own pace while responding with comments and probes when appropriate”

(p. 311). I recognized that I could not control the process of the interviewing, as the participants

are highly skilled communicators who actively utilize open-ended questioning and frequently

utilize exploration as a part of their daily clinical practice. It is an expected clinical competency

to demonstrate a facilitator style in conversation and employ active listening. The practitioners

are practiced professionals in both roles.

“In the unstructured interviews…the participants are given considerable control over the

course of the interview” (Corbin & Morse, 2003, p. 339). The challenge of being in the role of

the active listener in this process is that I have been used to having equal speaking time with the

individuals being interviewed. However, the process is consistent with the practices of an

unstructured mode of interviewing in that the agenda and pace of the interview is set by the

participants through their stories and events they chose to tell (Corbin & Morse, 2003, p. 340).

Gathering further information through direct overt observation of the processes of

prognostication of the PCN was to enrich the interview data to provide a deeper analysis and

trustworthiness (Lincoln & Guba, 1985, p. 287). The data obtained through the participant

observations served to check the actions and behaviours of prognostication in practice with how

the participants articulated this work in the interview during data analysis. I decided to follow a

consistent framework to guide the individual participant observations (Mack, Woodsong,

Macqueen, Guest, & Namey, 2005, pp. 13-27).

46

According to Mack et al., 2005 a good observation is based on specific criteria to which I

followed (p. 20). These included watching for verbal behaviours and interactions around

categories of gender, age, ethnicity, profession, and tone of voice (p. 20). I paid attention to the

physical behaviours and gestures of the individuals being observed both participants and patients

and their families (p. 20). I also noted the use of space by those being observed and the impact of

traffic through the environment during the interaction (p. 20).

The difficulty in doing participant observation is knowing what to focus on at any given

time and to remember the details of the interaction with accuracy and detail. I found it important

to immediately write my field notes on completion of the observation. I later wrote a broader

narrative style memo on each field note which I tried to accomplish this within a two day period.

I specifically avoided using abbreviations to avoid confusion when writing my memos. During

analysis, I compared my observation memos and looked for conceptual categories and themes.

Direct observations provided the presentation of “motives, beliefs, concerns, interests,

unconscious behaviors, customs…and to see the world as the participants do” (Lincoln & Guba,

1985, p. 273). Additionally, Lincoln and Guba (1985) presented observation as giving the

researcher the opportunity to check back with the findings of the interview data to analyze the

categories of information for congruency or dissonance (p. 276).

Data analysis. Data analysis began with the initial gathering of data. “In many kinds of

qualitative work, analysis begins as soon as the first units of data are collected and this

preliminary analysis then directs further data collection” (Sandelowski, 1995, p. 372). GT coding

“requires us to ask analytical questions of the data we have gathered” (Charmaz, 2006, p. 42). It

47

is encouraged that the researcher start reading through the transcripts to start production of the

theory through coding (Charmaz, 2006, p. 45).

In CGT, there are two phases of coding which are initial and focused. Initial coding

includes looking at words, lines, segments and incidents for their analytic import. The

subsequent focused phase is where the researcher selects the most useful initial codes to sort,

synthesize, integrate and organize large amounts of data (Charmaz, 2006, p. 42). GT is noted for

comparing data with data and then data with codes. It is this constant comparison approach that

attempts to gather enough information to fully develop or saturate the model (Creswell, 2013, p.

1919). Coding suggests building categories concerned with telling and shapes an analytic form

from which the researcher builds the analysis (Charmaz, 2006, p. 52).

I chose to theoretically sample after the seventh interview in order to further direct and

develop the emerging theoretical concepts and met the criteria of saturation by interview eleven.

(Charmaz, 2014, p. 193). Additionally, I requested clarity from the initial seven participants via

their managers and work email as to whether the concepts resonated with them. Three of the

seven returned responses that were then coded with the interview participants eight through

eleven. Theoretical sampling is undertaken to obtain further data to refine and fill out the major

categories until there are no new categories (Charmaz, 2014, p. 192).

It was obvious through this coding exercise and reflective memoing that the experiences

of PCN and prognostication was more complex than I had anticipated. I found I could theorize

about these categories with the “what” happens with prognostication but was having difficulty

with establishing activities of theorizing with the “why” and “how” of PCN prognostication and

their subsequent contingent relationships. Memoing reflected that I was not hearing nor seeing

48

any new patterns yet I could not analytically move forward. In one memo, I wondered if I was

experiencing what Glaser referred to as ‘reflexivity paralysis’ (2001, p. 41).

Though frustrated, I recognized through memoing that the theorizing would remain

incomplete unless I returned to the data. I had to set aside my preconceived ideas about

prognostication and made the decision to re-engage with my verbatim transcript to specifically

attempt to answer those “why” and “how” questions (Charmaz, 2014, p. 228). In order to ensure

that I was maximizing the findings I chose to return to the all of the transcripts and re-coded all

eleven transcripts with additional first cycle coding for emotion (Saldaña, 2009, p. 86). The

initially coding had explicated the three overarching categories of PCN prognostication but it

was the additional first cycle coding that thickened and produced further subcategories which

clarified the “why” and “how” of prognostication. I was thus able to thicken my categories and

move into theorizing. Theoretical saturation was met following the eleventh interview and data

collection was stopped. Saturation means that no new properties of the categories emerge during

the data collection with theoretical completeness so it is not the same as seeing repetition of

themes when comparing data (Charmaz, 2006, p. 12). To assess whether saturation was

achieved, I asked,

What comparisons could I make between data within and between categories? What

sense could I make of these comparisons? Where did this lead me? How did these

comparisons illuminate my theoretical categories? In what other directions, if any, did

they take me? (Charmaz, 2006, p. 12)

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Coding means categorizing segments of data with a short name that simultaneously

summarizes and accounts for each piece of data. “Your codes show how you select, separate, and

sort data to begin an analytic accounting of them” (Charmaz, 2006, p. 44).

While coding occurs so too does memoing built on observations and impressions. Any

known thoughts and theories can be added to the text in the margin, sometimes simultaneous

with the writing of the line-by-line coding (Charmaz, 2006, p. 44). Previously, I discovered that

writing narrative memos can be uncomfortable in the beginning as it can feel like an exercise in

creating more questions. Charmaz recommended that the best way for a researcher to engage in

their material after establishing codes and categories is to write memos. “Memo-writing is the

pivotal intermediate step between data collection and writing drafts of papers” (Charmaz, 2006,

p. 72). She encouraged memo-writing as a crucial method in GT to analyze the data and codes

early in the research process (Charmaz, 2006, p. 72).

I used the activity of diagramming as part of the theorizing process and created multiple

visual concept models to tease out relationships between categories as well as look for movement

and meaning (Charmaz, 2014, p. 218). My final concept model was built on this beginning

framework and process of diagramming (Charmaz, 2006, p. 86).

Study evaluation. Whether you follow the evaluation strategies of Chenitz and Swanson

(1986), Charmaz (2006), or Corbin and Strauss (2008) these strategies have considerable

overlap. As with all forms of GT, our goal as researchers is to validate findings and seek to prove

fit, relevance, work and modifiability throughout the research process (Charmaz, 2006, p. 182).

Chenitz and Swanson (1986) outlined several guidelines to consider when evaluating GT

research (p. 151). These guidelines include the nature of the research question, the nature and

50

scope of the literature review, whether multiple data sources were used, the theory itself and the

theory’s usefulness (p. 152). The nature of the research question is cited as one of the most

important factors when evaluating GT. A research question should be broad enough to elicit data

that could change the question as the research develops. This relates to the concept of “Fit”

which refers to how the categories in the theory relate back to the theory (McCann & Clark,

2003b, p. 26). If there is little to no change it may be attributed to researcher bias (p. 151). This

concept is related to “Relevance” which is demonstrated when emergence of the theory has not

been altered by preconceived ideas (McCann & Clark, 2003b, p. 26).

The research question was: “What is the theory that explains the process of

prognostication for individuals with life-limiting, non-malignant illness by Palliative Care

Nurses” (Ferguson, 2015)? While sufficiently broad and open enough to fulfill “Fit” in eliciting

data, the question did evolve as the study progressed. During analysis and theorizing, the

question narrowed in scope to be exclusive to the work of the advanced practice PCN.

If the research question does not fit the setting in which the research is occurring, then

this too is a sign that the nature of the question is incorrect (p. 152). This concept refers to

“Work” which is the ability of the theory to explain the phenomena in context (McCann & Clark,

2003b, p. 26). There was congruence between the research question and the setting, further

strengthening that the nature of the research question was correct. This was evidenced by the

emergence of a core-category that elicited the phenomena of ‘Temporizing Uncertainty’.

Next, one regards the literature review in GT which serves a vastly different purpose than

in quantitative research. Done well, the literature review in GT serves to elevate theoretical

development rather than direct the focus of the research (p. 152). Also, whether or not the

51

researcher utilized multiple sources of data. In GT, continuously evaluating data against other

sources which ensures greater diversity and the development of stronger theory (p. 152). This

speaks to “Modifiability” which shows that the theory is both adaptable and modifiable (McCann

& Clark, 2003b, p. 26).

The initial literature review in chapter two demonstrated limited knowledge on the study

topic (see Table 1 in Appendix C). By bringing in extant literature in during the analysis and

theorizing, I further honed and developed the categories, sub-categories which offered an

explanation for the discovered theoretical model that represented this advanced practice PCN

prognostic experience with non-malignant illnesses.

The participant observation field-notes and memos were coded and the categories were

compared with the categories and subcategories from the transcribed interviews. Diagramming

exercises were additionally used to visualize relationships (Charmaz, 2014, p. 218). These

actions ensured the development of a strong theorizing process. The final theoretical model is

broad enough to be consider modifiable and adaptable, in that it could apply to other processes

and ambiguous decision-making, beyond the discipline of nursing. This is discussed in greater

detail in chapter five.

Chenitz and Swanson (1986) suggested that the theory itself should be dense and clear.

“Density” refers to whether the categories in the analysis have been sufficiently connected to the

theory which has emerge (p. 153). The theory itself should also reflect the social world of the

participants in the setting of study (p. 153). Lastly, the theory needs to be considered useful.

“Usefulness” subscribes to the notion that the knowledge surrounding the phenomenon has been

broaden enough to inform future research (p. 153).

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The final theoretical model presented in the next chapter reflects the social world of this

group of advance practice PCN. The emergent core-category and phenomena of ‘Temporizing

Uncertainty’ was unexpected and only emerged after adhering to a second re-coding of the

interview transcriptions that thickened and produced further subcategories which clarified the

“why” and “how” of prognostication. The full theoretical model is discussed in further detail in

chapter five. The usefulness for future research is presented in chapter six.

Like these guidelines, Charmaz (2006) echoed the elements she uses in evaluating GT

research. Of these criteria Corbin and Strauss (2008) stated “of all the criteria I’ve read, I find

hers the most comprehensive because they address both the scientific and creative aspects of

doing qualitative research” (p. 299). These criteria are credibility, originality, resonance and

usefulness (p. 182). Charmaz (2006) provided the researcher a substantive list of questions in

each category to assess each criterion (p. 181). She encouraged their use as “these criteria

address the implicit actions and meanings in the studied phenomenon and help you analyze how

it is constructed” (p. 182).

Credibility. Credibility demonstrates strong linkages between the data and the analysis

and is substantive enough to support your claims that will persuade your audience (p. 182). As

the researcher, credibility includes how well I am able to establish that I have collected enough

data and have been able to demonstrate intimate familiarity with the topic. I need to show that

there enough detail to provide a logical trail of systematic comparisons between observations and

categories (Charmaz, 2006, p. 182).

In order to establish credibility I took a number of necessary steps. For the clinical

observations I created a template with key components to consider when writing the field notes

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and memoing. This was to ensure that I kept to a consistent approach in data collection without

relying on my memory of the observations. The key components in the template were based on

Mack et al., 2005, comprehensive review on how to conduct participant observations (pp. 1-21).

I chose to focus on the following: 1. Identify and describe the people involved in the interaction.

2. Describe the physical space. 3. Describe the purpose of the interaction and the activities

occurring. 4. Describe the physical behaviours and gestures of the participants. 4. Identify any

sequencing of actions.

The participant observation was purposefully undertaken prior to the interview.

Advanced practice PCN are solo practitioners, they are not usually observed in this work beyond

their own initial orientation to the work and or in orienting new colleagues. I wanted to see how

the work of prognostication unfolds in the clinical environment without preconceived ideas or

impressions on my part. Participants were then interviewed but were not constrained in speaking

about the observed work as part of their examples of exploring prognostication.

I followed my participant observation and interviews with detailed field notes and

memoing on the participant observations. I used the following questions as per Charmaz (2014)

to critically guide the analysis of the data and codes and to avoid my own preconceived ideas: 1.

What is going on? 2. What are people doing? 3. What are people saying or not saying? 4. What

process is at issue here? 6. Under what conditions does it seem to occur? These questions

assisted me in examining ideas and codes and build the foundation of the analysis. I further used

constant comparison between the participant observations to look for interconnectedness with the

categories derived from the line-by-line coding of the participant interviews (Charmaz, 2014).

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Originality. Originality offers new insights and conceptualization of the data (p. 182).

The research audience will assess originality on how well I can conceptualize the processes of

advanced practice PCN in the prognostication in non-malignant diseases by moving beyond the

mere description of decision-making (Charmaz, 2006, p. 182).

The findings and emergence of the core-category ‘Temporizing Uncertainty’ underscores

the offering of a new concept of the process of prognostication that was unexpected and original

in nature. The core categories and sub-categories were reformed into a theoretical model that

describes in detail the process of prognostication by advance practice PCN well beyond the

decision-making component.

Resonance. Resonance is when the theorizing reflects the lived experiences of the

participants and it makes sense to them (Charmaz, 2006, p. 183). I established resonance with the

advanced practice PCN by email by confirming interpreted findings with theoretical sampling. In

future, the advanced practice PCN will additionally have access to the disseminated research

findings. Feedback in future as to whether it makes sense to them and they have new and deeper

understanding of the processes of prognostication will also reflect resonance (p. 183).

Usefulness. Usefulness takes your offering of theory beyond knowing and into the sphere

of adding substantively for further inquiry (Charmaz, 2006, p. 183). If useful, the research

findings will generate deeper understanding of the lived experiences of the nurses and encourage

future research into related generic processes in prognostication (p. 183). I demonstrated

usefulness in this research in the creation of the theoretical model of ‘Temporizing Uncertainty’

as presented in chapter five. This model demonstrated the phenomenon of advanced practice

PCN beyond decision-making. It theorizes the process and factors that impact prognostication

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for this social group. It provides new knowledge of what is known of this clinical work and thus

provides opportunity to improve this work in future, specifically in the area of prospective

trending.

The endeavor to undertake research is daunting and one may not always have clarity into

what impact will result. Charmaz (2006) challenged the researcher to keep in mind the question

“knowledge for what?” and to always remember the readers (p. 184). She said her conclusion

that “we need to consider our audiences, be they teachers or colleagues. They will judge the

usefulness of our methods by the quality of our final product” (p. 182). Corbin and Strauss

(2008) encouraged the researcher to remember that the evaluation criteria of qualitative research

are guidelines and not ridged rules (p. 309). One should not shy away from creative analysis by

being bound to prescriptive rules of evaluation but should be able to justify why and how the

deviation from a conventional mode of inquiry occurred (p. 309).

My research question had an aim to get at meaning, not at a truth or set of truths. A CGT

may remain at a more intuitive, impressionistic level (Charmaz, 2014). I sought implicit

meanings from one interview and then viewed other interviews for the same implicitly

(Charmaz, 2006).

In CGT, the researcher makes multiple analytic decisions (Manning, 1997). A critical

decision is how much content is required to convey the story with depth and clarity to achieve

the right level of complexity we acknowledge the potential audience and sense the appropriate

style and level at which to write it (Charmaz, 2014, p. 285). The outcome of the research

reflected the collective meanings of the advanced practice PCN and their experiences. This was

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demonstrated through addressing the above noted steps in the evaluation of this study through

the elements of credibility, originality, resonance and usefulness.

Writing. Charmaz promoted a thematic style of writing in CGT (Mills et al., 2006). This

is a strategy that emphasizes a continual analysis of the theoretical framework has been

developed (Mills et al., 2006). Charmaz (2006) stated that with writing, the researcher must face

the challenge of finding a balance between theoretical interpretations with aestheticism (p. 152).

The researcher should attempt to evoke experiential feeling through their writing by using a

linguistic style and narrative exposition to set the mood (p. 172).

Charmaz (2006) encouraged simple and clear language for the sake of readability (p.

172). She also promoted the use of analogies and metaphors to expound tacit meanings and

feelings in a category (p. 172). Charmaz (2006) urged the researcher to consider using questions

to tie main ideas together or redirect the reader (p. 173). She encouraged the researcher using

CGT to ultimately stay in the background as the storyteller. To do this well I started with the

conceptual categories and built the story around them (p. 176). I presented the findings and

theoretical model through my interpretations and through the participant voices using quotations

from the transcribed interviews.

Limitations of the Study Methods

As with all research, this study has limitations. A known limitation with CGT is the

subjectivity of the analysis of the researcher. The CGT is an interpretive methodology which

could be critiqued as being solely based on my biases, assumptions and perceptions without fully

representing those of the participants. Thus it was important to share my own assumptions about

the topic.

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Another limitation is that all of the participants knew me outside of the role of researcher

and may have responded to the interview questions based on what they thought I might want to

hear versus what they really thought about the topic.

To limit bias during analysis, I coded my interviews blind by using pseudonyms rather

than the actual participant’s name. All codes were later scrutinized by my supervisor and I kept a

journal to reflect on the impact I might have had on the participants.

Recruitment was challenging due to the small number of potential participants working as

PCN in the Calgary Zone. My final sample size was small, however, theoretical saturation is not

dependent on a prescribed number of interviews (Charmaz, 2014). The variety of care settings of

the participants made the logistics of meeting challenging because of distance and travel

requirements. The other clinical demands of the PCN participants interrupted the interviewing

process on a number of occasions and waiting for non-malignant referrals caused the need to

rebook the observation and interview.

Lastly, CGT can be criticized as not being generalizable in nature. Generalizability was

not the goal of this study. Rather, it was to expose and theorize the social actions that underpin

the processes about prognostication for this specific PCN group in their practice context. The

goal was to demonstrate that the criteria of credibility, originality, resonance and usefulness were

met (Charmaz, 2006, p. 182).

Conclusion

In this chapter I described the methodological underpinning for my inquiry about the

process and experiences of advanced practice PCN use to prognosticate in non-malignant

illnesses. I provided an overview of GT (GT) and its subsequent iterations and why the choice of

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the Constructive version of GT was the appropriate fit for this study. I discussed how the

ontological and epistemological position of the researcher informed the choice of CGT. I

outlined the steps of recruitment, data collection, data storage, memo writing, data analysis and

memo writing. Finally, I explained the importance of study evaluation ensuring rigor, accuracy

and reflexivity in the theory conceptualization. In the next chapter I will present my findings, the

emergent categories, themes and theoretical model and additional relational concepts from the

analysis.

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Chapter Four: Empirical Findings

This chapter presents the key findings from eleven in-depth interviews and nine

observations. The study objectives that created the foundation of the study were:

1. How did advanced practice PCN perceived prognostication in chronic illnesses versus

malignant illnesses?

2. How did advanced practice PCN approach prognostication in practice?

3. What were the reasoning and decision-making factors that impacted advanced

practice PCN prognostication in non-malignant illnesses?

Findings

Three major findings emerged from this study. These main findings are reflected in three

overarching categories and 14 subcategories (see Appendix J) which formulate the theoretical

framework of ‘Temporizing Uncertainty’. Following is the presentation of the findings through

discussion of each category in connection with the participant quotations taken from interview

transcripts. Participant quotations provide perspective of the individual and collective ideas about

the complexities of prognostication. When appropriate, observational data is woven in to

augment and support the discussion.

The observation settings were in acute care, long-term care, and supportive living, and in

private patient homes during daytime hours when the work of the team is usually completed.

Observations were arranged ahead of time for community settings. Acute care observations were

arranged with the participant on a chosen date with the researcher on stand-by for new referrals

that met the patient criteria. If a new referral during the day did not meet the patient criteria, a

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new future date was scheduled. The observations were important in the capturing of group

processes, actions, and group communication in the PCN-patient interaction.

Finding One: Cognitive (Thinking) Factors

All participants elicited cognitive, psychological factors that impacted their personal

work and decision-making of non-malignant prognostication. This category represents the ‘what’

or the ‘mind’ of prognostication as an intellectual process of knowing, understanding, and

thinking. The factors that emerged are captured by the following interpreted subcategories: death

awareness of others, questioning self, fallibility, and perceptions of chronic diseases, and

describing chronic diseases metaphorically.

Finding Two: Affective (Emotion) Factors

The majority of participants elicited motivating, affective, psychological factors in

undertaking the work of prognostication. This category represents the ‘why’ or ‘heart’ of

prognostication as the connection of knowledge and motivation with action. The affective,

motivating factors that emerged are captured by the following interpreted subcategories: wonder,

intuition, anticipating dying, preparing the patient and family, and supporting symptoms and

quality of life.

Finding Three: Conative (Volition)

All participants discussed the core concepts of PCN prognostication in their interviews.

The process which emerged in the analysis was interpreted as: Knowing-Assessing-Trending-

Predicting-Pronouncing. This category demonstrates the ‘how’ or ‘process’ of prognostication as

the identified undertaken actions followed by PCN. The overwhelming majority of participants,

during observations demonstrated most of the core concepts that framed the conative process of

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advanced practice PCN prognostication in non-malignant illnesses. Only one participant was

divergent from the remaining and was not observed to demonstrate the full process of

prognostication.

Participant Observations

The importance of presence was highlighted during participant observations with the

majority of participants during the work of prognostication. I paid particular attention to how the

participants verbally and non-verbally enacted presence during the nurse-patient-family

interactions. I was interested in whether the participants follow the same order of questioning?

Would the participants use the same words? What was similar between clinicians was the

introduction of themselves to others, following the practice standard of our organization (NOD).

There was no similarity with order of tasks or questioning between clinicians nor use of the same

language or rote scripting of questions. What was strikingly similar amongst most PCN was the

non-verbal attention to location and position of self to the patient and family and the use of

positive eye contact and calm demeanor. I believe these attributes provided a strong early

connection in establishing PCN to patient and family rapport.

I observed the demonstration of mindfulness, active listening and engagement by the

overwhelming majority of participants during the patient and family interactions. They were

observed to be aware, attentive, and responsive to the overt suffering of the patient and or the

family. Only one participant was observed to distinctly lack a skilled and mindful nurse-patient

interaction. The observations of the advanced practice PCN doing the work of prognostication

revealed the second subcategory of the exploration step that advanced practice PCN undertake in

the conative process of prognostication.

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Presenting the Findings Through Participant Voice

The following is the presentation and description of the categories and subcategories in

deeper detail. The complexities of the experiences of the PCN will be shared in their own voices

from the transcribed interviews and through the researcher’s observations of the PCN in their

work of prognosticating.

In finding one, all participants elicited cognitive, psychological factors that impacted DM

of non-malignant prognostication. These factors were subcategorized as death awareness of

others, questioning of self, fallibility, and perceptions of chronic diseases, and describing chronic

diseases metaphorically.

Death Awareness of Others

Death awareness is the awareness of one’s own mortality and according to Terror

Management Theory (TMT), it has the ability to impact our thoughts, feelings and behaviours.

TMT suggests that the majority of individuals repress thoughts of one’s own demise as a means

of self-defence against the existential distress (Mikulincer & Florian, 2002).

All 11 participants (100%) identified that an awareness of death of others emphasizes the

potential ramifications prognosis has on patients and families. This finding is highly significant

in that all the participants recognize the seriousness of the task of prognostication. Advanced

practice PCN may be less aware of the impact death awareness has on their own psyche and DM.

Patricia: Families often need to make decisions based on how we prognosticate you

know. Whether people are coming from out of town you know making arrangements, like

everything and yeah it has huge impact I think.

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Thelma: Prognosis would be probably one of the major factors that would make a

difference in terms of where he goes from here.

Stacey: You have to be able to prognosticate to go to hospice.

Ann: The fact is that this patient may have a very limited timeframe so do we take away

those opportunities for people to have closure, get home, get to hospice, get the care

that’s most appropriate?

Questioning Self

Question (n.) from Latin is defined as “a seeking, a questioning, inquiry, and examining,

judicial investigation” (Online Etymology Dictionary). Questioning-self is the action of self-

examination. All 11 participants (100%) experienced questioning self in prognosticating.

The PCN is at an impasse having contradicting, often ambiguous information with which

to establish a reasonable estimate of life-remaining. In a non-malignant illness, an example

would be when a patient experiences an exacerbation and it is unclear as to whether the

individual will survive the event or succumb to death. Once the decision is made, the PCN often

distrusts its trustworthiness.

Thelma: I think it just comes with experience and we are never confident.

Patricia: If you know there is aspiration or dysphagia, I would say then I feel more

confident but I always have a level of discomfort.

Stacey: I am going to get into trouble for sending her to hospice.

I was loathe to send her to hospice because I thought (pause) she might be one of those

who might still be here in several months.

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Karen: I never felt prepared because I didn’t feel I had enough knowledge as I should

have.

Fallibility

Fallible (adj.) from Latin is defined as “liable to err” (Online Etymology Dictionary). A

majority of PCN, 7 of 11 (64%), expressed awareness of their previous, inaccurate prognostic

decisions.

Ann: I’ve made mistakes.

I think there is a fear of us being wrong and feeling, like I know I have colleagues say

well I’ve made mistakes so now next time I am really worried.

Patricia: I think sometimes when you get that feedback it’s like wow, you know? I guess

I’m of the mentality that you know it doesn’t mean that I failed. Right? Or that hospice

was the wrong place.

Thelma: Two weeks later you find they are actively dying and you wonder if there was

something I did not see?

Perceptions of Chronic Diseases

A majority of PCN, 7 of 11 (64%), considered prognostication in chronic diseases to be

more difficult and challenging than in malignant illnesses.

Patricia: I feel less confident predicting prognosis in a non-cancer population unless

somebody has a terminal delirium. For hospice placement I would say almost use the

guide (PPSv2) of 20% or less for non-cancerous diagnoses. Where they have to be

completely bedridden and total care and really only taking a few sips or a few mouthfuls.

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I would say that tends to be my guide but I feel at times that I’m almost a bit too

restrictive.

Karen: I think with the chronic diseases it’s much more difficult because with a cancer

diagnosis it progresses along and it’s fairly easy to see what’s unfolding.

Describing Chronic Diseases Metaphorically

Some PCN, 6 of 11 (55%), used metaphoric language to visually depict and describe their

experiences of prognosticating with non-malignant illnesses.

Thelma: So, you always go out on a limb with these people.

Karen: I think you know it can appear very serious as though the person has a very short

time but with chronic diseases there is a period of compensation within the body that can

last for an extended period of time so it can be a very cloudy picture.

It’s been said that we are at the end stage that could still look like a roller coaster

nobody knows when that cat is going to have its ninth life.

Trudy: Sometime you see decline like we have talked about with this group of clients

where it’s just a bump in the road.

In finding two, the majority of participants elicited affective, psychological factors when

describing the work of prognostication. This category represents the ‘why’ or ‘heart’ of

prognostication as the connection of knowledge and motivation with action.

The affective factors reflect the underlying motivations and experiences of

prognostication. The interpreted subcategories that emerged were: wonder, intuition, anticipating

dying, and preparing the patient and family, and supporting symptoms and quality of life.

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Wonder

Wonder (v.) from Old English is defined as “to be astonished or entertain some doubt or

curiosity” (Online Etymology Dictionary). An overwhelming majority of PCN, 10 of 11 (91%),

have experienced wonder with a patient with a non-malignant illness. In retrospect, the PCN is

unable to contemplate the reason for an unexpected death or survival in their patient. This

experience with non-malignant illnesses was reported with amazement, surprise and incredulity.

Sally: I don’t know why he died, I don’t know what it was. I didn’t even think to guess

what it was.

Louise: Why did she die? Not sure.

Thelma: We may predict that someone has a short time and they live longer sometimes.

We predict they have a longer time and then we are shocked that they died and things

happen to people that can’t be predicted.

Intuition

Intuition (n.) from Latin defined as “insight, direct or immediate cognition, spiritual

perception” (Online Etymology Dictionary). A majority of PCN, 9 of 11 (82%), have had

interactions with patients that were easily identified as imminently dying. The decision-making

is quick and often described as an instinctive feeling.

Theresa: I’ve gone through all the clinical stats, the lab values. I’ve done the history and

then go in there and it’s like that was totally wrong. Yes, I think this patient is for sure

dying. There is something telling me that she really is dying right away.

Karen: I think there is a certain instinct in helping or knowing when these things and

transitions are happening.

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Ann: There is an informal feel of situations which you can’t necessarily put your finger

on but over the years you develop a little bit of a sensor or a feel and intuition as to how

you feel this going to go and that’s harder to define.

Anticipating Dying and Preparing the Patient and Family

All 11 participants (100%) articulated how being able to anticipate or foresee dying is of

value in that it provides the foundation for preparing the patient and family for death, assist with

life review and legacy work and decisions around end-of-life (EOL) location.

Bacall: I try to be as you know clear, especially if it’s very you know we are talking very

short periods of time that I try to be as clear as I can with my patients and families.

Saying, do you want your brother to come from Saskatchewan? Now is the time to give

him a phone call-and those sorts of things.

Stacey: I think they have a right to know. They need to make plans, they need to say

things that they didn’t say-you know all that stuff that needs to be done. I think people

want prognostic disclosure, so trying to prognosticate therefore seems like it is very

important.

Chiefy: It’s more just recognizing it’s hard and thinking about prognostication as

planning and helping families to live in that instability and ambiguity.

Theresa: We didn’t know what was going to happen so at that point I wasn’t asked but I

was involved in a conversation with the family just to help prepare them about the

unknown.

Trudy: How can we provide better care? Or what’s more important now? How does that

fit in with quality of life?

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Supporting Symptoms and Quality of Life

In the work of prognostication, PCN seek to reframe the focus of the patient at EOL on

the supporting of symptoms and quality of life.

Stacey: I usually pursue the symptom management first because I find if people are

uncomfortable they are unable to discuss anything else.

Ann: I am always looking for ways to modify things to improve the quality.

Patricia: It wasn’t until they realized you know, given this all (pause) he is nearing the

end of his life I accept that and lets just focus on comfort. With that shift and the change

in the management plan, the wife identified that this had been the most comfortable he’d

been in his entire life. This is what I want the focus to be.

Chiefy: I did not see her death in the immediate future but there were a lot of things that

we could do to make her more comfortable.

The Process of Prognostication

The overwhelming majority of participants 8 of 9, during observations demonstrated

most of the core concepts that framed the conative process of advanced practice PCN

prognostication in non-malignant illnesses. All participants 11 of 11 articulated in their

interviews the core concepts of PCN prognostication in the interviews. The process which

emerged in the analysis was interpreted as: Knowing-Assessing-Trending-Predicting-

Pronouncing. The identified process is presented as a rightward moving process illustrated on the

following page.

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Knowing

Carper (1978), in her seminal work, identified four patterns of nursing knowledge that I

adhered to in the interpretation of this category. Nursing knowledge can be characterized as

being empirical, aesthetic, personal, and ethical in nature (p. 14). This in-depth construct framed

the development of this category into the defined action of applying knowledge in the process of

prognostication of non-malignant illnesses by advanced practice PCN. To know (n.) from Old

English is defined as to “perceive or understand as a fact or truth” and “to experience, live

through “To know (n.) from Old English is defined as to “perceive or understand as a fact or

truth” and “to experience, live through” (Online Etymology Dictionary). However, this category

moves beyond this dictionary definition as Carper’s construct has holistic depth.

I considered Carper’s definition of nursing knowledge when reflecting and reasoning

about this category. The data from the interviews and observations demonstrated that advanced

practice PCN use their acquired knowledge of disease history, illness trajectories, and disease

modifying therapies when approaching prognostication. Secondly, their personal knowledge of

what they have seen and experienced previously in the work of prognostication was integrated

into their subsequent exposure to this work. Thirdly, advanced practice PCN considered

prognostication important, thus the ethically appropriate thing to do, as it was important to

patients and families. Lastly, the aesthetic knowing in prognostication is the combination of the

Knowing Exploring Assessing Trending Predicting Pronouncing

Figure 4.1 PCN Process of Prognostication in Non-Malignant Illnesses

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previous knowledge categories and any new perceptions and understandings of non-malignant

prognostication (Carper, 1978).

Patricia explained to the daughter that the patient’s prognosis was uncertain based on

her underlying dementia diagnosis. She explained to the daughter that her mother had

many months of poor oral intake and declining physical status and she could not

ascertain whether the clinical status presently was indicative of an imminent end of life

period or a new clinical baseline. (Field notes, Patricia Observation)

Karen questioned out loud why her patient was referred to the Palliative team as she

started to review the patient’s file. She listed his chronic illnesses, looked at his recent

blood work and discharge note and then confirmed with the patient that he had newly

worsening renal failure and had declined dialysis against medical recommendations. She

then asked the patient if he understood the consequences of refusing dialysis. (Field

notes, Karen, Observation)

Trudy explained the uncertainty of when her (dementia patient) death would occur but

discussed with the daughter the ‘markers’ of what indicated getting closer to death such

as diminished consciousness and lack of interest in any oral intake and staying in bed

and sleeping more. (Field notes, Trudy Observation)

The family was very distressed with the patient’s poor clinical status. Sally remained

calm and reviewed his underlying illnesses (COPD, Pulmonary Fibrosis, GI bleed) and

how these were impacting his overall status. She discussed how he was declining with no

expectation of improvement. The family asked for concrete information to support these

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statements and Sally moved into discussing his recent chest x-ray and lab work which

showed worsening pulmonary scarring and renal failure. (Field notes, Sally Observation)

Theresa: A lot of it [prognostication] goes based on experiences. It’s what we’ve

seen…this is not what we’ve seen. With the COPD population, because I feel like they

don’t have a lot of explanation about what’s going to happen with their disease. So I feel

I do have to use that trajectory scale to help them just understand what is happening.

Louise: It is quite hard to prognosticate with non-cancer and the seniors, I think. It is

hard to use trajectories. They are all good for groups of people but for individuals, you

know, not so great.

Trudy: Prognosticating for end stage lung-disease is very, very tough because people are

amazing and they surprise us all the time.

Exploring

Explore (v.) from Latin is defined as to “investigate, search out, examine” (Online

etymology dictionary). Exploring is the actions the PCN employs to uncover and grasp how the

patient and family comprehend and view the illness status. The advanced practice nurses were

observed to consider the diagnosis of the patient in their interactions, their personal behaviours

and sought to understand the perceptions of the illness by the patient and family. All observed

PCN used attentiveness and active listening as demonstrating the exploring concept in their work

of prognostication. The PCN considers the collection of collateral information of others as

important in this phase.

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The patient wanted to know what would happen if she decided to stop taking her cardiac

medications. Theresa replied, Can you tell me what you know about your heart failure

and COPD? What have you been told? (Field notes, Theresa Observation)

The sons wanted to let their mom die in her own home. Chiefy asked them to explain what

concerns they had about their mom dying at home, asking for them to share their

perceptions and experience with supporting someone’s dying process. Chiefy leaned

towards the each son as they spoke and nodded as they shared their understanding of the

illness and their subsequent concerns. She addressed their concerns by explaining what

her death would likely look like, possible symptoms that would need managing and after

death care. (Field notes, Chiefy).

Karen: …what has the doctor told you about your illness? ...because then you know

where they are at with their illness and what they are thinking.

Patricia: People have an innate sense.

Ann: A lot of it is feeling your way through conversations and by saying to people what

do you understand is happening with you now?

Trudy: Using the surprise question, well it opens it up not so much to prognosticate but

very much where do you think you’re at?

Sally: I go a lot on the objective report of family.

Ann: I always go for collateral information. I think family are really helpful…you start to

figure out these things you get layers of information that add up.

Bacall: If there are other teams that are involved- hearing from them, what are their

thoughts?

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Thelma: I got the impression from him that he didn’t think he had more than a couple of

months to live. When I went to see the patient I think my own feeling was even stronger

than what I was leaning towards before I entered the room.

Assessing

Assess (v.) from Latin is defined as to “determine the value of” (Online etymology

dictionary). Assessing is the action of collecting information reflecting a combination of

biological measurements along with the patient’s behaviours by the PCN.

Biological Measures. Advanced practice PCN regarded specific biological

measurements as key components in considering an individual’s prognosis. The

following factors were included in the category of biological measures: physiological

age, weight, blood testing such as CBC, and electrolytes, albumin, creatinine, urea, liver

panel, and output from bladder and bowel. Artificial hydration and nutrition were

considered to be a part of the biological measures.

Personal behaviours. Advanced practice PCN regarded personal behaviours of the

individual in concert with the biological measures as pivotal in the work process of

prognostication. These behaviours included the individual’s desire to eat, quantity of

intake, ability to swallow, and time spent awake/asleep, mentation, will to live, level of

consciousness, and engagement in socializing and one’s ability to perform activities of

daily living.

Chiefy: I do look at albumin…I look at in addition to function, nutritional status,

anorexia, intake…weight loss…edema.

Theresa: I would look at their appetite so how much are they eating and

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drinking…I would look at their functional status, how much are they moving…and

their lab values…how much are they sleeping during my conversation are they

drifting off to sleep while were talking are they pretty alert?

Trudy: Mostly intake, mobility…cognition…withdrawn…interest in food…telling

that people are getting closer to the end of their life within months perhaps.

Stacey: Albumin…I do look for that when and if it’s really low it just even adds to

my thinking process a bit more about where they’re at.

Patricia: So intake is one of the biggest [prognostic factors].

Chiefy: I try to get a specific functional markers as much as possible but I don’t

use a specific scale because what I want is the patients experience and how they

feel and their limits.

Thelma: If they can’t lie in bed without being breathless, I usually found that has

been a good predictor. Frequent hospitalizations…appetite.

Theresa: She slept through our entire conversation, she was sleeping 90% of the

day…right away, and within 5 minutes of being there I knew that it was clear that

she was a hospice patient.

Karen: I think level of functioning, you know, their mobility, their oral intake.

Trending

Trend (n.) from English is defined as a “general course or direction” (Online etymology

dictionary). Trending is the action of the advanced practice PCN obtaining either a retrospective

or prospective view of the performance status of a patient, over a given timeline, irrespective of

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non-malignant diagnoses and or presence or absence of symptoms. Trending in the past included

the number of hospitalizations and emergency visits the patient had over a certain timeframe.

The timeframe for retrospective trending ranged between participants from a few weeks to a few

months up to one year in duration. Trending forward frequently included the measuring of intake

and output and functional status over many days to short weeks. Advanced practice PCN seek to

establish an identifiable pattern of either clinical status stability or decline by comparing current

clinical status to the information gleaned from trending. The primary clinical tool used to assess

performance status was the PPSv2.

Patricia: I would also look at sort of the frequency of hospitalizations…over the past

year. We will watch over the weekend to determine whether you know hospice would be

appropriate….to prognosticate if he was in within that timeframe.

Theresa: I would look at how many hospital admissions they’ve had. I will ask the

nursing staff to document…how much did they sleep during their shift, how much did they

eat and how much were they mobilizing because I feel if I can get a good sense of what

that’s like for three or four days I think it helps to determine prognosis.

Trudy: I just grab a chunk of time, six months...three months and look at now as to how it

compares to get a sense.

Stacey: Finding out what’s happened with that patient specifically in the past few weeks.

I will often look at how many urgent care admissions they have had in the past six months

or twelve months.

Chiefy: I find, I think you don’t compensate when it’s a steep change over a couple of

weeks or months.

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Ann: I am looking for that stabilizing. If it feels like they’ve been stable for probably

around a week to ten days then I might say I think this may be the pattern.

Sally: I am a very big believer in in patterns…the rate of decline, how long have they

been stable, when did they decline and how dramatic.

Theresa: With the PPSv2, I feel like if it is 30% or higher it’s really hard for me to use

because I see so many people with a PPSv2 of 30% that live for quite a long time

whereas if the PPSv2 is more like 20% then I can use that a little bit more stronger for

prognostication. But I use it as an added piece.

Karen: [PPSv2] I think it is less helpful than it is with the cancer patients…with a

chronic disease they can sit in a range for years.

Patricia: We often use the palliative performance scale to guide us you know and I think

it fits well for cancer trajectory when we look at 40% or less I would say almost use the

guide of 20% or less for non-cancerous diagnoses.

Trudy: [PPSv2] It is hard to apply it sometimes to our population because there’s

multiple co-morbidities.

Louise: [PPSv2] It is a good measure, and it gives us a good idea in changes, in that

PPSv2 is probably a better measure for watching a person and functionally they are

changing over time.

Bacall: [PPSv2] is helpful if looking at changes over time.

Predicting

Predict (v.) from Latin is defined as “foretell, advise, give notice” (Online etymology

dictionary). The advanced practice PCN conceptualized and predicted the potential prognosis

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based on intuition and experience and anticipated the expected decline based on known history

of disease and the patient’s care context. The prediction was shared with the patient and family

in the next category of pronouncing unless the patient and family have requested to not know.

Karen: To the patient I would say “you may not have as much time as you hoped. The key

is to focus on the present and make sense of the meaning your life has held for you. Often

prognosis is inaccurate and focusing on legacy work, your spiritual and mental self,

being with your family and friends can prepare you for whatever is coming.” To the

family, “I think that they will be gone before my next scheduled visit.” The nurse may

need to be more frank as the situation is unfolding.

Thelma: I think my predictions to families are what I am thinking myself. I try to be

transparent with families. At the same time I stress that no one can know for sure. If I am

suggesting a longer prognosis (such as weeks to months) I usually say that something

sudden and unexpected can also happen. I think of approximate time periods, recognizing

that we cannot be precise. I use periods of time: Hours to days, days to a couple of

weeks, a few weeks to many weeks, and weeks to months.

Louise: [With patients and families] I am more likely to talk about time in terms of broad

frames-like weeks to months when discussing prognosis. I always say that I could be

wrong. I am more likely to talk about ‘not another Christmas’, ‘not another month’ and

that I can’t predict how long people live but can talk about what will make a difference to

the quality of the time left. Is there anything you would do differently if the time is

shorter?

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Pronouncing

Pronounce (v.) from Latin is defined as “to proclaim, announce, utter out in public”

(Online etymology dictionary). The decision formulated the PCN reveals their prognostic

timeline, signs of imminent dying and what to expect with the patient, family and the health care

team, in order to assist with preparing the patient and family for dying and in order to facilitate

transitioning to a palliative approach to care, address symptom management, and chosen end-of-

life location. The prognostic timeline is not openly shared with the patient and family if they

have decided they do not want to know, however, recommendations around symptom

management and location of dying is shared regardless of timeline. The anticipated care needs

and recommended care location along with predicted timeline is shared with the health team and

will be documented in the patients chart, regardless of care sector.

Karen: When the nurse notices a decline indicative of the patient passing into end-of-life

the nurse gently begins to discuss goal of care changes, touring of hospices, increasing

in-home supports as well as the signs of end-of-life. I speak about symptoms as well so

that the patient realizes what may happen. They generally ask a lot of questions. Subtle

statements let patients and families know that the situation is progressing. I may know

that the patient will be deceased soon but I try to use softer terms.

Thelma: [Out of town family arriving in a few weeks] I think my face gave an expression

to her of concern because then she said, is that not soon enough? I cannot say for sure

when he is going to die but if I had to guess I would say we’re in the final days. There are

some things which lead us to believe that someone is nearing the end of their life or what

is currently happening is telling us something. If they are very resistant to hearing what I

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think, I don’t push it. I always ask if they are wanting to know what I see and what I think

might be happening.

Louise: There is no point in beating around the bush. There is no point in leaving things

misunderstood then I am probably clearer. This is what looks like is happening to me.

I will be very clear with the family. I will say we are really close, your mom or dad is

very close to the end of their life. Do you see that? Do you think that they are dying? So

yes, it is shocking to people because they do not really see it even if it is hitting them in

the face. They may not recognize the person is dying.

Sally: I have had some really frank conversations. Some attending physicians say “I

don’t want to steal hope”. Well, they kind of need to know what’s going on... It is a

misconception that that if I talk candidly and honestly to a patient that they’re going to

lose hope... One patient with multiple comorbidities and whose performance status was

so poor wanted me to tell him directly what was happening. I was saying to him you’re

really sick, you’re dying. We just don’t know when.

Ann: I guess the element of time comes into a couple of things. One would be families or

a person trying to figure out what kind of timeframe am I looking at for the length of my

life, what kind of timeframe am I looking at for functionality, quality of life, interactions

and getting things done? Is their care going to be feasible in their current living situation

they were in prior to that or do we need to look at some options?

The field observations illustrated the differences between clinicians in the ordering of

their directed time with patients and families. Only one clinician was seen to follow a list of

sequential tasks with closed-ended questioning. All remaining advanced practice PCN

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consistently used an unstructured approach, open-ended questioning using words that were

unique to the individual. No one followed a similar sequence of questions or the gathering of

information in a specific order however, the majority allowed the patient and or family to direct

the movement of the conversation. All but one clinician followed mindful awareness, seeking to

understand the messages of the others through summarizing and seeking validated responses.

This included the attention to physical place and positioning oneself in the room and using

positive body language. The overwhelming majority of PCN were inattentive to linear time and

were not seen to wear wrist watches nor seen to look at patient clocks.

I observed that the overwhelming majority of participants demonstrated mindful, active

listening and engagement during the patient and family interactions. The majority of participants

were observed to be aware, attentive and responsive to the suffering of the patient and or family

when evident. The observations of the advanced practice PCN doing the work of prognostication

illustrated the seeking of information and understanding of illness by the patient and family as

interpreted in the second subcategory of the exploration step that PCN undertake in the process

of DM in prognostication in Figure 4.1.

The PCN tailored the conversation on the priorities of the family. She maintained good

eye contact. She used intentional pauses to allow the family to think before they replied. She

reflected back to the family what she understood of the family response for confirmation. (Field

notes, Chiefy Observation)

The patient was quite distressed that he was close to dying. He stated that he did not want

to die, he wanted to live. The PCN reached out and touched his forearm and said, are you are

afraid? The patient started to cry. (Field notes, Sally Observation)

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Mindfulness

Mindful (adj.) from Old English is defined as “thoughtful” (Online etymology

dictionary). The overwhelming majority of the advance practice PCN participants I observed, 8

of 9 (89%), demonstrated the ability to offer their audience their full attention in the present

moment and showed curiosity, openness, and acceptance. Mindfulness was demonstrated when

the participant was able to give their full attention to the present interaction with the patient and

family without regard to the passage of linear time.

The PCN carried nothing into the room that might create a physical barrier between her

and those present in the room (patient & daughter). On entering the room, I noted how

the daughter looked ‘stressed’, facially frowning. Her hair was disheveled and her

clothes unkempt. She was pacing in the room and appeared distressed. The PCN initiated

the conversation by identifying herself and her purpose for the visit. [Hospice

assessment] Although the patient was non-responsive, she approached the bedside and

introduced herself to the patient. The PCN had a soft-well modulated voice and calm

demeanor. She gathered chairs to sit beside the hospital bed for her and the daughter and

invited her to sit, the daughter sat beside the PCN. There was minimal distance between

the PCN and the daughter. Neither paid attention to the length of time passing. No one

looked at the clock nor were found to be checking a wrist watch. (Field notes, Patricia,

acute care)

The PCN entered the home’s foyer and immediately set down her portfolio. She carried

nothing into the home. After introducing herself to the patient’s two sons and purpose for

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the visit [EOL assessment & symptom management requested by family] she obtained

permission to enter. The sons requested that they meet in the living room and not in the

patient’s bedroom. The PCN waited for the sons to sit before choosing her seat within

close proximity to both. She paused and waited for the sons to lead the conversation with

their questions and concerns. There was no attention noted by participants to the passage

of time. (Field notes, Chiefy, home visit)

The PCN entered the patient room and introduced herself to the patient and family and

the purpose for the visit [Family and patient support with precarious patient status]. The

patient’s sister was verbally aggressive to the PCN stating she was angry that Palliative

Care had been consulted and demanded to know what his chances were for recovery. The

PCN remained calm and suggested that everyone sit down around the patient’s bed. The

family refused and the PCN pulled up a chair at the head of the patient’s bed which

maintained a moderate distance from the family but had close proximity and good eye

contact with the patient. She asked the patient if he needed her support and consented to

her presence. Once confirmed that the patient wanted her to stay-she paused and waited

for the patient to lead the conversation. She used open-ended questions [Tell me what

concerns you most at this time?] (Field notes, Sally, acute care)

Active listening

The majority of observed advanced practice PCN participants, 8 of 9 (89%), listened

fully to the speaker, whether patient or family member and actively showed verbal and non-

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verbal signs of attentively listening. The use of positive, affirmative body language and

vocalization was seen in the nurse-patient interactions.

The PCN demonstrated positive body language by sitting beside the daughter and

intentionally turning her upper body toward the daughter in order to directly face her.

She additionally leaned in and established eye contact. (Field notes, Patricia

Observation)

The PCN waited for the patient’s sons to choose their seating before selecting her own

within close proximity to both. She pivoted her upper body towards the speaker during

the interaction. She tilted her head and nodded during the conversation. (Field notes,

Chiefy Observation)

The PCN nodded and vocalized [uh huh] following the patient’s description of his

strategies to manage his dyspnea. She maintained good eye contact. (Field notes, Sally,

Observation)

Engagement

Engage (v.) from French is defined as to “attract and occupy the attention of” (Online

etymology dictionary). All advanced practice PCN participants, 9 of 9 (100%), demonstrated the

skill of building a positive connection and rapport with patients and families within a short

period of time. The observations showed the PCN introduced themselves, provided opportunities

for the patient and family members to talk while they listened, validated fears and concerns and

explained their role on the healthcare team.

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There was noted pauses and silences used by the PCN to give the daughter time to think

about the information and to ask questions. She summarized the daughter’s message

[reflected back] to clarify understanding and meaning of the daughter’s inquiry. (Field

notes, Patricia Observation)

The PCN easily transitioned through the questions brought forward by the sons in

regards to their mother’s status and what to expect for her imminent end-of-life period.

She spoke in clear, concise language using pauses and silence to allow the sons to

interject additional comments. She used open-ended questions [Tell me about…] She

allowed the family to lead the conversation through their concerns and questions. She

frequently summarized the messages back to the sons to confirm her comprehension. She

summarized the discussion at the end and highlighted action items for the homecare

nurse to follow-up with and waited for the sons to acknowledge. She confirmed that there

were no other concerns or questions before terminating the visit. (Field notes, Chiefy

Observation)

Attentive to Suffering

A majority of advanced practice PCN participants, 6 of 9 (67%), demonstrated

empathetic responses, both verbally and non-verbally, to the patient and or family in response to

identified suffering. Attentive to suffering is a reflection of clinical empathy and involves an

ability to understand the patient and family’s situation, perspective and feelings as well as to be

able to communicate that understanding with clarity and to act in a therapeutic manner (Mercer

& Reynolds, 2002, p. S9).

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The PCN demonstrated empathy and attention to suffering when the daughter cried while

discussing her mother’s noted physical decline by using a non-verbal movement and

touching of the daughter’s forearm. (Field notes, Patricia Observation)

The PCN touched the patient’s shoulder when the patient exclaimed ‘I don’t want to die,

I want to live’. (Field notes, Sally, Observation)

The PCN acknowledged the son’s shocked expression at the prognostic information

shared by leaning forward and saying “You were not expecting this, were you? This must

be hard. (Field notes, Ann, Observation)

Summary Memo: PCN Observations

In spite of the variety of locations and reasons for referral with the participant

observations, I am struck at how consistent the PCN were in their approaches to their

patient and family interactions. The overwhelming majority of participants were fully

present and attentive to the patient and or family member(s) without any noted awareness

to the passage of linear time. No PCN participant was observed to look at either a clock

or ask about the time of day. The overwhelming majority of PCN were observed to be

highly focused in the engaged interactions regardless of a highly distracting environment

[Noise and interruptions]. Only one PCN was divergent from the rest. Only one PCN did

not engage in a mindful and patient-centered nurse-patient interaction. All PCN

presented with calm tones of voice and adopted well-modulated speech. All but one

participant seemed consciously selective about where they physically positioned

themselves in the room. One participant created a physical barrier between her and the

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patient with her portfolio and laptop. All participants selected to sit within close

proximity to the patient and family. The majority were seen to adopt effective non-verbal

body language for listening [leaning in, tilting head, nodding]. All participants [but one]

carried nothing into their patient and family interactions. The overwhelming majority (8

out of 9 observed) used silence and pauses to reflect attentive listening. Only one

participant directed the conversation with task-oriented questioning. The remaining PCN

observed used open-ended questions were which used to explore meaning and

understanding in the conversations. The majority of PCN were observed to practice

validation and acknowledged patient and family concerns through verbal and non-verbal

cues. The majority of PCN observed were seen to acknowledge suffering with empathetic

touch.

Conclusion

This chapter presented the three findings that emerged from 11 in-depth interviews and

nine observations. Extensive participant quotations and field notes were used to better represent

the real experiences of the advanced practice PCN in non-malignant prognostication and was

organized according to the three overarching categories and 14 subcategories (see Appendix J).

The primary finding of the study was the cognitive, psychological factors that impact the

decision-making of PCN in non-malignant prognostication. These factors were identified as:

death awareness of others, questioning self, fallibility, and perceptions of chronic diseases, and

describing chronic diseases metaphorically.

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The secondary finding was the affective, psychological factors which are the motivating

factors that impact the process and decision-making of advanced practice PCN in non-malignant

prognostication. These factors were identified as wonder, intuition, anticipating dying and

preparing the patient and family, and supporting symptoms and quality of life.

The third finding was the interpreted conative process PCN use in prognostication. This

process was identified as: Knowing-Assessing-Trending-Predicting-Pronouncing.

The participant observations revealed that the majority of participants employed mindful,

active listening and engagement during the patient and family interactions. The majority of

participants were observed to be aware, attentive and responsive to the suffering of the patient

and or family. The observations reflected the second subcategory of exploration in the process of

decision-making in the process of prognostication from finding three.

The next chapter will present the analysis of these findings and the constructivist

reconstructing theorizing that sought explanation of PCN prognostication in non-malignant

illnesses.

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Chapter Five: Temporizing Uncertainty

This chapter presents the data analysis and theorizing of this CGT. The objectives of this

study were to consider the experiences of PCN in prognosticating in non-malignant illnesses and

to elucidate understanding of the process, and factors that impact the complex decision making

for this particular group of advance practice nurses.

The principles of CGT data analysis were followed in this study. Codes were applied to

label each new idea found during the line-by-line coding. Themes that were found to be

conceptually similar were subsequently grouped together as concepts. The theoretical

framework, the product of this study, represents the central theme of the data and explicates the

theory that accounts for the experiences, processes and factors that explain the phenomena of

PCN prognostication.

The concept of theorizing in CGT was initially discussed in chapter three but will be

briefly reviewed here to allow the reader to recall the difference between theorizing and the

classical GT approach of theory generation. In classical GT, a discovered theory emerges from

the data which seeks to explain and predict and looks for generality and universality (Charmaz,

2014). In CGT, there may not be a theory which emerges. The focus is an interpretation of the

findings in order to give an abstract theoretical understanding of the studied phenomenon

(Charmaz, 2014, p. 230).

My purpose as researcher was to seek out the meanings and actions of the decision-

making of prognostication by PCN and to acknowledge the subjectivity of each individual,

including my own and offer an imaginative interpretation of what makes sense of the studied

phenomenon (Charmaz, 2014, p. 231). Thus, this CGT study did not aim to find a truth or set of

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truths, rather it sought to find a collective meaning of prognostication within the social contexts

of PCN. The research questions that guided this study was: “What is the theory that explains the

process of prognostication for individuals with life-limiting, non-malignant illness by Palliative

Care Nurses?”

The advanced practice PCN in this study expressed that their main concern in achieving

an accurate prognosis was to prepare the patient and family for dying, to manage symptoms, and

promote quality of life. What emerged in this study were psychological categories and

subcategories that demonstrated the challenging phenomenon in obtaining an accurate estimation

of life remaining.

The research showed that the advanced practice PCN are guided in the process of

prognostication, including the decision-making elements by interrelating affective and cognitive

psychological factors, within the context of the unpredictable trajectory of chronic illnesses. In

other words, they were trying to determine the best possible prognostic decision in the context of

multiple uncertainties. To my surprise, I found an emergent core category. Throughout the data

analysis I used memos to connect the categories and their relationship with each other to

determine that ‘Temporizing Uncertainty’ captured the centrality of the phenomena.

To assess whether this theoretical code was in fact the core category I considered

Glaser’s (1978) criteria. Did it appear throughout the data? It did. Did it take longer to saturate?

It took the longest to saturate. Did it relate meaningfully to the other categories? It explained the

phenomena in context and offered an explanation of the complex process of prognostication and

decision-making that the advanced practice PCN undertake. It was general and could be applied

to other disciplines. Lastly, it emerged and was not forced. As a CGT study I did not expect nor

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look for a core category. I took the categories and diagrammed until I could conceptualize a

theoretical model to demonstrate the prognostic process with the DM factors in order to realize

the interrelated connections (Charmaz, 2006, p. 86).

The primary findings of the study were the cognitive factors that impact the process and

DM of advanced practice PCN in non-malignant prognostication. These factors were identified

as: death awareness of others, questioning self, fallibility, and perceptions of chronic diseases,

and describing chronic diseases metaphorically. The secondary findings were the affective

factors that motivate the decision-making of PCN in non-malignant prognostication. These

factors were identified as wonder, intuition, anticipating dying and preparing the patient and

family, and supporting symptoms and quality of life.

The third findings were the conative factors, the active process PCN use in

prognostication. This process was identified as: Knowing-Assessing-Trending-Predicting-

Pronouncing. Participant observations revealed that the majority of participants employed

mindful, active listening and engagement during the patient and family interactions. The majority

of participants were observed to be aware, attentive and responsive when there was evident

suffering by the patient and or family. The observations reflected the exploration step that the

PCN undertake in the process of decision-making in the process of prognostication.

Next, I present and discuss each category, subcategory and the theoretical model. I will

then explain the connections and relationships of the concepts and connect this interpreted work

to relevant extant literature. I conclude with a summation about the emergent theory of

‘Temporizing Uncertainty’.

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Figure 5.1

Temporizing Uncertainty

A Theoretical Model of Advanced Practice PCN process of

prognostication in Non-malignant illnesses and the factors impacting

DM.

Advanced Practice PCN Process of Prognostication: CONATIVE (Volition) Factors

(VOLITION)

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Decision-making (DM)

Prognostication is a complex process requiring DM by an advanced practice PCN in a

patient-nurse interaction. This interaction is subject to internal and external factors. I formulated

a tri-component theoretical model of the process of prognostication and DM that visually

represented the advanced practice PCN prognostication in non-malignant illnesses (Figure 5.1).

Advanced practice PCN prognostication is an individual work with an added DM activity

in the setting of uncertain illness situations. Decision-making is the mental processing of choice

by individuals through an interplay of one’s components of the mind through their cognition,

affective and conative domains (Huitt, 1992; Huitt, 1998; Saunders & Buehner, 2013). Although

separate aspects of the mind, all three are so interconnected that they are best understood in the

relationship of one mind when contemplating complex DM (Rolo & DÍaz-cabrera, 2005). One

cannot separate the workings in the mind where one domain begins and one ends.

Cognition is an intellectual process by which knowing is gained from perceptions or

ideas (Webster’s Dictionary). Cognition is composed of knowing, understanding and thinking

(Lerner, Li, Valdesolo, & Kassam, 2015; Tyburski, 2017). Cognitive factors include one’s

intellect, perceptions, ability to judge and problem-solve, ability to access and use acquired

knowledge and see complex relationships between concepts (Brett, Smith, Price, & Huitt, 2003;

Tyburski, 2017). Cognition is the reason-based system of the mind (Rolo & DÍaz-cabrera, 2005;

Tyburski,).

The affective domain of the mind is associated with the emotional interpretation of

perceptions, information and knowledge (Brett et al., 2003). Affect is unspecified feelings that

involve emotions, mood, and emotion-related traits (Lerner et al., 2015, p. 801). Affective factors

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include passions, values, and sentiments. It is the domain of the affect that explains an

individual’s motivation for acting in specific ways (Brett et al., 2003).

The conative domain refers to the connection of knowledge and affect to an action. It is

closely linked to the concept of volition, which is the use of one’s will or one’s freedom to make

choices about what to do (Hilgard, 1980). Conative relates to one’s ability to be self-directed and

self-regulated.

Finding One: Cognitive (Thinking) Factors

All the participants elicited similar cognitive factors that impacted their personal work

and decision-making of non-malignant prognostication. This category represents the ‘what’ or

the ‘mind’ of prognostication as an intellectual process of knowing, understanding, and thinking.

Five subcategories form this category and represent the mental processing activity undertaken by

PCN in prognostication. Participants spoke of prognostication as a task within their regular role.

All participants expressed knowing the impact prognostication had on patients and families,

underlying a unifying expression of seriousness held by the group in doing prognostic work.

Participants perceived chronic illnesses as more difficult to prognosticate versus those

with a cancer diagnoses. The majority of PCN consistently shared doubt about prognostic DM

when dealing with a chronic illness and in being aware of past errors in providing an incorrect

prognosis. Personal experiences of working with chronic diseases were highlighted by

participants’ description as being highly ambiguous in nature through a visual description using

metaphoric language.

Death Awareness of Others. Participants were keenly tuned into how impactful dying is

on patients and families. Most PCN tied prognostication to individuals being able to complete

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life tasks with families. PCN determined prognostication assists with determining location and

type of care needed for a patient.

Questioning Self. Participants frequently questioned their decision-making following the

decision as to whether it was correct. Lacking confidence about previous decisions was prevalent

among participants regardless of their years of experience.

Fallibility. Most participants related how they were aware of previous non-malignant

prognostic events were incorrect. These experiences were framed in a negative light as a failure

and was expressed by having worry that they carried into their future prognostic work.

Perceptions of Chronic Diseases. Many participants believed that prognosticating in

chronic diseases was harder than with malignant illnesses. A few believed it created nervousness

in the future work of prognosticating due to the increased uncertainty and unpredictability. One

participant imposed a stricter process by which she determined whether a patient should go to

hospice by waiting for a lower performance status than what was required to waitlist for hospice

placement.

Describing Chronic Diseases Metaphorically. Some participants described chronic

diseases visually in abstract, metaphoric language. The expression of metaphoric language

undergirded the perception of participants that chronic diseases were unpredictable and elusive.

One participant expressed metaphorically how this work held potentially negative consequences

for the clinician.

Significance of Finding One

Providing care to individuals and their families at end-of-life can be challenging to the

palliative care professional. A prevalent reason health care providers enter into their profession is

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to help others. Helping others for some aligns with the goals of restoration and cure from disease.

Death and dying are difficult to talk about, with our own families and certainly for those we care

for.

Sally: I see the doctor just wants to save. That is what they have been taught. Some

believe death is a failure.

Patricia: There were people [Health care providers] not even identifying the stress of

when they needed to intervene or when to ask for help. People not even having the

landmarks of even to know where to go from here and that they should be doing

something.

Advanced practice PCN often have to start a patient-nurse interaction with an explanation

about what palliative care is, experientially in an apologetic and defensive way. We are often the

unwelcome guest in a patient interaction with whom neither requested nor wishes to interact with

us. Although the advanced practice PCN practice is broad it follows core foundational concepts

with a focus on quality of life and symptom management. We cannot remove our primary

identity, which is inextricably linked with death and dying. Dying is the raison d’etre for our

professional existence and our daily work. Accordingly, we continually walk into clinical

situations where patients or other health care providers express anger and fear when death seems

inevitable. This could be a plausible explanation in this study why advanced practice PCN are

aware how momentous death is, as they have experienced the interactions by which to draw from

and have witnessed the consequences of previous DM.

Sally: I think that death can actually be a good thing and everybody is going to die.

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Karen: You want to tread lightly because you want to build the trust…if you go in and

talk to them ‘you’re going to die’ that’s going to scare them.

Patricia: There was a lot of fear around death.

Ann: The team saying we are not talking about hospice we are not talking about those

things- well then we are treating the team we are not treating the patient and the fact is

that this patient may have a very limited timeframe. So, do we take away those

opportunities for people to have closure, get home, get to hospice, get the care that’s

most appropriate?

Health care professionals could argue that working and understanding chronic illnesses is

a specialty area, similar to palliative care. Palliative care nurses all come to their advance

practice role with individualized experience and education. The majority of the studied clinicians

have predominantly oncology clinical background. Prognosticating in non-malignant illnesses

has been learned ‘on the job’ with disease trajectories lesser known to the advanced practice

PCN. This could explain why they perceived non-malignant illnesses as being more difficult to

prognosticate than with cancer diagnoses. However, I think that is too simplistic of a reason. I

believe it to be multifactorial in nature.

Chiefy: When I go to see those patients as opposed to cancer patients, I feel a little more

edgy because I know I am walking into a lot more unknowns that if I were walking into

someone with pancreatic cancer…that’s predictable to me. [On a patient discharged

from hospice] She was dismissed from hospice into long-term care where she resumed

her needlepoint and other things and she died in long term care about 18 months after I

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sent her to hospice- at deaths door and to me I mean it illustrates how many unknowns

there are in the work with that we do.

Non-malignant illnesses are unpredictable because individuals do not follow the same

pattern even when they have the same degree of disease severity and disability. Furthermore,

although the term end-stage disease is used, there can be tremendous variation between

individuals in the same clinical population. Individuals adapt to chronic conditions over time and

no two individuals are the same in clinical presentations. Advanced practice PCN experience this

fluctuation between individuals and this seems more reasonable explanation to their perceptions

of difficulty along with their knowledge of chronic disease trajectories.

Thelma: the human body is complex and amazingly fluid and compensates. It is so

incredible, and I think if people have been ill for a long period of time and have adapted

gradually to something, it is amazing what they can live with.

Ann: I think that we treat people differently with the cancer trajectory than with a non-

cancer trajectory. I think it’s, I think we have a little bit more difficulty getting to the

point of recognizing that they could be end-of-life.

Bacall: I find it sometimes actually hard to apply to each patient because each patient

experience is going to be so different, right? You know that heart failure is not the same

in every single patient. Patients are much more able to manage and compensate than

others for a variety of reasons.

Ann: We have had two people who have had the prognosis that was not imminent that I

have made here but they were also both extremely compromised and had no quality of

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life and both were suffering tremendously. So, even that prognosis component can be

interpreted I guess.

It may be that the lack of education and less experience with chronic illnesses that

induces advanced practice PCN to question themselves following their prognostic decision.

However, this does not explain why they questioned themselves regardless of how many years of

experience they had. One would surmise that increased experience would decrease the

questioning of self in decision-making but this is not what emerged in this study. The reverse

seemed to be true, the most experienced of the participants expressed questioning of self and

articulated the perception of potential negative consequences when the decision was inaccurate.

Ann: It’s troubling because you expect to worry. Do I see everything through the lens of

people dying?

One added reason could be tied to the subcategory of fallible. Advanced practice PCN

expressed awareness of previously inaccurate prognostic decisions as being negative in nature,

and thus if they have a history of having witnessed negative outcomes they would be careful

each instance in addressing this work in future. A process of self-reflection would be appropriate

and is an expected part of nursing practice. As they have this self-awareness of fallibility and

care about the awareness of death impact on the patient, these factors perhaps explain why the

participants used metaphoric language to describe chronic diseases. Metaphor is used as a

mechanism in language which represent the elusiveness and unknowability of this trajectory

(Citron & Goldberg, 2014). This may be an unconscious strategy to elicit emotions that buffer

bad news and protect the patient whom the advanced practice PCN clinician was aware were

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vulnerable or as a way to influence how the patient interpreted the prognostic information

(Citron & Goldberg, 2014; Landau, Meier, & Keefer, 2010).

Ann: I think there is a fear of us being wrong and feeling like, because I know and have

colleagues say well I’ve made a mistake and so the next time I am really worried.

Bacall: I keep in mind we are not perfect and I make that very clear to patients and

families. Prognostication is something we get wrong 100% of the time.

Finding Two: Affective (Emotion) Factors

The majority of participants shared similar affective factors within the work of

prognostication. This category represents the ‘why’ or ‘heart’ of prognostication as the

connection of knowledge and motivation with action. Four subcategories form this category and

represent the motivating and feeling processing by advanced practice PCN in prognostication.

An overwhelming majority of the participants have experienced surprise at the unexpected

survival or demise of a patient with a chronic illness. Participants expressed uncertainty on

reflection as to why the individual in mind had unexpectedly survived or death.

A majority of participants expressed having feelings of assuredness of impending demise

of a patient that were described as fast and instinctual. This intuition was applied in the context

of a patient within an immediate timeframe versus one with many weeks or many months to live.

The majority of the participants tied the importance of prognostication with their professional

values of preparing the patient and families for death and to promote life review, legacy work,

and decisions around EOL location as well as Supporting Symptoms distressing to the patient.

Anticipating dying and preparing the patient and family. All the participants

expressed valuing the ability to anticipate dying was beneficial in order to prepare the patient and

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family for death. The core values of Palliative Care demonstrated that the task of prognostication

fulfilled foundational practice norms.

Supporting Symptoms and quality of life. PCN considered prognostication as one

function of their role. PCN work included supporting symptoms and promoting quality of life

alongside the work of prognostication. This additionally demonstrated a fulfilling of foundational

palliative care practice norms.

Wonder. The majority of PCN described having been surprised at the survival or demise

of a patient. These experiences shaped clinician perceptions about prognosticating in the future

with non-malignant illnesses.

Intuition. PCN expressed surety of knowing a patient was imminently dying that was

inexplicable, but attributed to intuition. Intuition was described as being a quick and assured

decision in the context of a shortened timeline and did not apply to patients with many weeks or

months left to live.

Significance of Finding Two

Prognostication in non-malignant illnesses is emotional work. Emotional work in the

psychological sense of the underlying meaning and motivation of one’s work. Meaning and

motivation in one’s work is individualist in nature yet the majority of the participants articulated

similar factors in the work of prognostication that suggest a common tie to professional identity.

Advanced practice PCN articulated that they valued the task of prognostication for its

connection to other valued parts in the PCN role. Similar to the findings of Pontin and Jordon

(2013), the valued tasks which are tied to prognostication are promoting life review, legacy

work, end-of-life decision-making (location of death), and promoting comfort (symptom

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management). Thus, the participants valued the task of prognostication as a means to fulfill the

role of advocacy for the patient and because patients and families valued knowing a timeframe

(Martin & Koesel, 2010).

Patricia: It’s not what we anticipate I would say, it’s still a possibility you know, and that

way families they often need to make decisions based on how we prognosticate you know.

Thelma: The need to prognosticate can come about more than one way. You could be

asked that by family or by staff and it may impact where care is better provided.

The advanced practice PCN used the work of prognostication to move to do the other

work that framed their valuing of palliative care norms of practice. By being aware of this factor,

advanced practice PCN moved from a role of communicating the prognosis to being a

patient/family educator, advocate and supporter (Martin & Koesel, 2010; Newman, 2016). For

instance, if the timeline was framed as “I believe you have a few months left to live, I can help

you understand how your symptoms may change and what we can do to alleviate them”. This fits

with Reinke et al., (2016) findings that nurses support hope through a trusting relationship with a

focus on quality of life.

Karen: So the first day you walk in, you know where they are at in their trajectory. I think

a palliative nurse is always thinking that- when they meet a patient, because it also

guides how you’re going to speak to them and what you’re going to talk about. I feel like

a big part of palliative nursing is rapport building so if you try to put them somewhere

that they are not at-you can have someone that is good or at late stage-you go in and you

talk to them like they are dying (pause) sooner that they are ready to hear-you will just

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sacrifice the relationship and then you won’t be able to be there for them when they

really need you.

Ann: We need to help people understand what choices they do have. My job is to focus

on helping them feel as well as they can while things are happening. I will sometimes

take those opportunities to potentially talk to the family to see where they are at and to

ensure that they are getting the support they need in the midst of honest information not

brutal information but honest information to prepare them that this person may not live

as long as they are hoping or expecting.

What is not known is the impact on an advanced practice PCN when they cannot fulfill

the valued work in practice. High uncertainty in prognosticating in chronic illnesses in this study

was articulated by the participant’s incredulity over an unexpected demise or survival. Thus,

their legacy work and life review with patients and the promotion of quality of life goals may not

have been fully addressed or fulfilled in the ways that are meaningful for all parties.

Thelma: I am not sure what a reasonable degree of accuracy is. People have such a wide

spectrum for each situation as to what would be expected and to figure it out.

Patricia: I think it can be really hard on family when they think somebody is at a

particular place in their disease and that’s not how it necessarily gets looked at.

The unpredictable nature of this work may additionally taint the DM approach in the

future as the advanced practice PCN are unable to fully comprehend and apply concrete

learnings from one prognostic encounter to the next. Accordingly what is absorbed into their

knowledge is the affirmation that a non-malignant illness has an uncertain trajectory. This is

reflected in the high level of self-questioning in spite of many years of experience with this

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work. The study revealed that advanced practice PCN clinicians never fully feel adequate in

anticipating death within a certain timeframe. This aligns with the findings of Clarke, et al.

(2009) that found that all clinicians were inconsistent and inaccurate in prognostic predictions

tending to underestimate survival.

Thelma: You wonder if there was something I did not see? Or is this just unpredictable?

There might be things lurking there that we could find that we have not thought of, or we

don’t put the formula together in the right way. Maybe we give too much credence to

something that is not really a factor and not enough to something else.

Patricia: We were managing her symptoms and then the following week [She] started to

wake up, started to get better, and to the point where we really were thinking, ok she

survived yet again.

How might an advanced practice PCN clinician feel adequate? By promoting quality of

life and legacy work in the face of their patient’s uncertain life expectancy. The exception to this

is when a patient is so imminently at end of life that the advanced practice PCN has intuitively

recognized the immediate need to prepare for impending death.

Theresa: I might have to have a conversation with the family but right away within five

minutes of being there I knew that it was clear that she was a hospice patient.

Chiefy: We had her family all prepared with the end-of-life pamphlet because there was

no question to me.

Contrary to the advanced practice PCN in this study, Christakis, in Death Foretold, found

that physicians neither acknowledge uncertainty nor fallibility in prognostication (p. 61). He

suggested that this is because rather than attribute a connection of inaccurate prognosis to their

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own lack of knowledge they attribute it to the disease process instead (p. 61). One explanation

for this difference could lie in the scope of the role and the expectations patients have on

physicians versus nurses, as well as professionally how they are educated differently.

I posit that nurses are very likely educated to be more inclusive and collaborative in

decision-making with patients than their physician counterparts and often the medical

interpreters for the patient and families (Adams et al., 2011). Additionally, nurses in their

subordinate role to the physician holds less power in clinical decision-making and thus the PCN

had no difficulty expressing how the task of prognostication caused them to doubt themselves

and to be uncertain.

Can this work then be taught? One participant articulated that education on

prognosticating within chronic illnesses would be key in the future as she felt it had been helpful

to be educated in cancer diagnoses.

Karen: There is not enough education about chronic diseases. We tend to get a lot of

education about cancer and pain management but I think we need more in-services about

cardiac illnesses and ALS and COPD. When those patients come to us we have less

knowledge.

One participant believed PCN need to adhere to the available validated tools and apply DM in a

rigorous way.

Chiefy: I have to think this through, I can’t just sort of take a sideways plan and say

they’re dying. So, I think part of the problem with prognosticating is just the lack of

skepticism about your assumptions and thinking just a little more rigorously and using

the tools that are available.

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There was no literature to suggest that prognostication is better amongst our palliative

physician counterparts (Clarke et al., 2009; Twomey et al., 2008). As stated previously, this

group of participants came from different clinical backgrounds with mostly oncology experience.

The work of prognostication on our team has occurred through job orientation and mentoring

with other palliative care clinicians both physician and nursing. In learning non-malignant

prognostication I suggest that the uncertainty and questioning of these participants may be due to

the lack of standard rigor in addressing prognostication in clinical practice. It could be due to a

lack of time or discomfort from other clinicians in teaching the concepts. It also could be that the

uncertainty of chronic illnesses and prognostic inaccuracy is an accepted reality in palliative care

culture and thus an ongoing expectation among clinicians (Kalowes, 2015; Pontin & Joran,

2013).

Kim (2011) suggested that nurses, by virtue of spending more time with patients have

more involvement with end-of-life DM with patients and families (p. 98). The DM of PCN with

patients with a non-malignant illness is different than what Kim (2011) alluded to, as

prognostication is not a usual or traditional EOL decision-making task for nurses. Advanced

practice nurses, such as the PCN in the study, are involved in this EOL task, but perform it

within a consultant role. The PCN are not at the bedside in an intimate 24 hour relationship nor

necessarily have a long-term relationship with patients, as perhaps with a unit nurse or a

homecare nurse. The PCN in this study may reasonably only interact with a patient once.

The APN role is tied to role outcomes which are to positively impact the care for

individuals. Key outcomes of the CNS-APN role outlined by the International Council of

Nursing include: 1) improved access to supportive care through case management to assess and

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manage risks and complications, plan and coordinate care, monitor and evaluate, and to advocate

for health and social services that best meet patient/client needs; 2) improved quality of life,

increased survival rates, lower complication rates, and improved physical, functional, and

psychological well-being of patients with acute or chronic conditions; 3) improved health

promotion practices such as immunization rates, weight management, and participation in cancer

screening; 4) improved recruitment and retention by mentoring, educating, and supporting nurses

at the front-line of care; and 5) reduced hospital admissions and visits to the emergency

department, shortened hospital lengths of stay and decreased use of unnecessary diagnostic tests,

through improved case management of patients with high risk and complex conditions (Martin-

Misener et al., 2010).

Contrary to these outcomes, PCN in APN roles are by virtue of the nature of their work,

misaligned with influencing survival rates nor can they reduce hospital admissions. While PCN

are strongly interested in the patient’s quality of life and preparing the patient and family for

death they would be less aware of any need to influence the patient’s length of stay in hospital.

Does this suggest that the PCN has conflicting identities? There might exist an

unconscious tension in what is valued from our palliative care framework versus our professional

APN framework. The element of expressed empathy of PCN may prove to be of greater

importance to PCN in clinical practice. Within the context of PCN prognostication the DM is

increasingly complex with psychosocial issues and systems pressures.

Karen: We always to some degree have to push back against the machine [Health

Region]. It is a machine, a bureaucracy. They put people in these categories and you

know people do not fit in categories as much as we might want them to.

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I would suggest, based on the study findings, that even when hospitals are in overcapacity

the primary focus of the PCN is to prognosticate as accurately as possible because of the

awareness of the potentially negative impact on a patient who is transferred to hospice who out

lives the criteria for hospice stay (Kalowes, 2015). PCN are aware that a move out of hospice to

long-term-care (LTC) is stressful on patient and families and attempt to avoid such an outcome.

Clinicians understand the impact multiple transfers and transitions have on patients.

Additionally, PCN are aware that extending a hospice stay beyond the three month criteria can

create waiting lists for future patients.

Louise: When we move somebody from hospice back to LTC then they die really fast.

Either way we can impact their life expectancy, probably by moving people. But

sometimes it works the other way so I don’t know. It is a pretty hard thing to do. It is

quite hard to do, prognosticate with non-cancer and the senior.

That being said, it would illustrate naïveté to believe that a heavy clinical workload has

no effect on decision-making. Is there potential to bypass rigorous decision-making and just take

a chance to move an individual to hospice? Yes, I think if the patient has increased suffering,

limited supports and heavy care needs, then hospice would be seriously considered, even if the

prognosis was uncertain. It would be remiss to think that the collateral information from other

healthcare providers does not impact the decision-making as well, even if it is contrary to the

clinician’s experience and initial conclusions.

Thelma: The internist said to me that there was no way she could live another three

months…and there were extenuating social circumstances. In that she had an elderly

husband who was living east of the city and was driving in from this rural area. Hospice

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was looking for patients and it was November, going into winter and we were worried

about this old man driving. We moved her into one of the hospice beds. She was there for

over two years. She was moved from there to supportive living. As far as I know, she is

still alive.

It is my own belief that although we operate as solo practitioners in this work we can be

persuaded by our collegial relationships and may consciously change a prognostic decision based

on a respected colleague’s conclusions. In times of severe system pressures, when hospital

capacity is high our consults subsequently increase. The referrals are submitted likely in the hope

by the attending teams that patients be moved to hospice, even if the patient is waitlisted for

LTC. It is widely known that the process to move a patient to hospice in the system is faster than

placement in supportive living or long-term care environments.

Bacall: At the end of the day with a bunch of other people who do the same job that I do

and we have many sort of informal discussions amongst ourselves at the end of the day.

You know, I saw this patient and you know this is sort of what happened this

morning…there is this patient…we sort of get everyone else’s opinions on it. What are we

thinking, you know, prognostically? You can put in your two cents.

Finding Three: Conative (Acting) Factors

The PCN articulated the core concepts that I framed as the conative, active process of

PCN prognostication. This category demonstrates the ‘how’ or ‘process’ of prognostication as

the identified undertaken actions followed by PCN. The visual representation of this process was

presented in Figure 4.1, as the leftward, step-wise process with these subcategories: Knowing-

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Assessing-Trending-Predicting-Pronouncing. Each identified concept is subject to a temporal

state.

Knowing. PCN use their knowledge, previous experience, education, and history of

diseases and trajectories as part of their decision-making in prognostication. The combination of

these factors make up the subcategory of knowing. Knowing is temporally built on past

knowledge and experiences but is further enhanced in the future with each prognostic encounter.

Louise: When the question is asked whether she can go to hospice, it becomes difficult to

prognosticate with someone who does not have a disease process killing her.

Thelma: the human body is complex and amazingly fluid and compensates. It is so

incredible, and I think if people have been ill for a long period of time and have adapted

gradually to something, it is amazing what they can live with.

Karen: a lot of it is instinct, as my experience has gone on…I think there is a certain

instinct to knowing these things and when transitions are happening.

Exploring. The actions the PCN employ to uncover and grasp how the patient and family

comprehend and view the illness status. All but one PCN were observed to use attentiveness and

active listening in their work of prognostication. The advanced practice PCN considers the

collection of collateral information of others as important in this phase. Exploring occurs in the

present time as the clinician considers and attends to the knowledge of others in regards to the

illness status.

Thelma: I usually ask people what they understand about what is happening to them. I

usually ask them what they are hoping for. This gives me insight into where they see

themselves. This man yesterday when I asked him what he was hoping for he said he

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knew that he was nearing the end but I hope I’m not going to be short of breath. So that

was an indicator to me that he saw himself at the end of life without me actually asking

him that question.

Assessing. The actions of collecting information reflecting a combination of biological

measurements along with the patient’s behaviours by the PCN. As with exploring, assessing

occurs in the present time.

Biological Measures. PCN regarded specific biological measurements as key

components in considering an individual’s prognosis. The following factors were included in the

category of biological measures: physiological age, weight, blood testing such as CBC, and

electrolytes, albumin, creatinine, urea, liver panel, and output from bladder and bowel. Artificial

hydration and nutrition were considered to be a part of the biological measures.

Ann: I am a big proponent of albumin and watching for trends. I’m looking for changes

in weight. I am looking at hemoglobin trending downward.

Stacey: Albumin is a global marker, it speaks to a lot when people get to the state when

their albumin is at 18 or lower. Other marker is eGFR [Kidney Function].

Theresa: I always look at hemoglobin to give me a sense of…a lot of people have anemia.

Sally: It’s big if someone’s anuric, that’s not good for prognosis.

Personal behaviours. PCN regarded personal behaviours of the individual in concert

with the biological measures as pivotal in the work process of prognostication. These behaviours

included the individual’s desire to eat, quantity of intake, ability to swallow, and time spent

awake/asleep, mentation, level of consciousness, symptoms, and engagement in socializing and

one’s ability to perform activities of daily living.

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Trudy: I look at mostly intake, mobility of part of the person’s functionality. Are they

becoming more withdrawn? Interest in food…interest in participating in other things?

Louise: When people are still eating and drinking they are probably not dying quickly.

It is more their functional level, their ability to care for themselves. If they have a really

poor functional level they are probably more, you know, have a shorter prognosis length

than three months.

Chiefy: Mentation is another piece that usually if there is some kind of delirium or a little

bit of confusion that is new and noticeable by the family that can’t be attributed to a new

medication then I’m wondering what’s going on underneath?

Theresa: I would look at their appetite, so how much are they eating and drinking? Do

they want to eat and drink? I would look at their functional status. How much are they

moving and getting out of bed?

Ann: Attitude really impacts the quality of your life. He kept socially engaged…it was

when I started to see him getting less and less engaged…well.

Karen: I think level of functioning, you know, their mobility and their oral intake.

Thelma: If someone is not eating because they are not hungry and they are sleeping 90%

of the day and falling asleep during conversations. To me that is a pretty strong indicator

that they may be at end-of-life.

Patricia: So intake is one of the biggest…where they almost have to be completely

bedridden and total care and really only taking sips or a few mouthfuls.

Patricia: I feel less comfortable predicting prognosis in non-cancer populations unless

somebody has a terminal delirium, or aspiration or dysphagia.

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Trending. Trending is the action of the PCN obtaining either a retrospective or

prospective view of the performance status of a patient, over a given timeline. Trending in the

past may include the number of hospitalizations and emergency visits the patient has had over a

certain time frame. Trending forward may include intake and output and functional status over

many days.

PCN seek to establish an identifiable pattern of either clinical status stability or decline

by comparing current clinical status to the information gleaned from trending. The primary

clinical tool used to assess performance status is the PPSv2. Trending ahead is the work

undertaken when a prognostic decision cannot be made and the decision is deferred to a future

time. This strategy delays prediction and pronouncement by choosing a future time with which to

reassess the performance status with or without added parameters as decided by the clinician.

Once this timeline is completed the PCN or colleague reassess the individual and moves into the

prediction and pronouncing process of prognostication.

Ann: I am looking for that stabilizing. If it feels like they’ve been stable for probably

around a week to ten days then I might say I think this may be the pattern.

Thelma: So in terms of function. It is not so much what people can’t do, because LTC is

full of people who cannot do things for themselves and peters on for two to three years

total care. It is the why they cannot do it and what the pattern and trajectory of that.

Theresa: I would look at how many admissions they’ve had in the last little while, you

know the trending. The more frequent admissions we see the more likely the shorter

prognosis they have.

Patricia: I would look at the last year and kind of what’s happened within that year. You

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know typically we use the palliative performance scale to guide us, you know, and I think

it fits well for the cancer trajectory when we look at 40% or less [for hospice] I would

say using a guide of 20% or less for non-cancerous diagnoses.

Chiefy: I am a big believer in patterns so when this probably won’t surprise you, you do

this, but it is the rate of decline. How long have they been stable? When did they begin to

decline and how dramatic? I am intentional about asking specifically, tell me what you

could do last week that you can’t do this week?

Ann: I look at functionality, quality of life, interactions, ability to get things done. It

depends on where they are at in their disease trajectory. Is this a sudden change? That is

different than someone who is rumbling along and declining.

Stacey: It is becoming a little bit more of an art than a science…have things been getting

worse, has it happened quickly or has it been kind of a more protracted steady flow of

decline? The rapidity of decline is something that gives me a bit of a hint as well as the

response or not to therapy.

Bacall: If we can sort of follow the patient over the course of a week to two weeks to see

if there is decline. Right, you know, is she looking different this Monday when I see her

next Monday? Tracking trends.

Patricia: We’ll watch over the weekend…we would just put things on hold, so we agree

to monitor his intake because I felt that was likely going to have the biggest impact on his

prognosis.

Ann: You follow someone over time, you really use observation. I do a lot of digging to

watch the patterns.

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Bacall: PPS is helpful if looking at changes over time.

Theresa: I will ask the nursing staff to document…how much did they sleep during their

shift, how much did they eat and how much were they mobilizing because I feel if I can

get a good sense of what that’s like for three or four days I think it helps to determine

prognosis.

Trudy: I just grab a chunk of time, six months...three months and look at now as to how it

compares to get a sense.

Predicting. The PCN conceptualizes and predicts the potential prognosis based on

intuition and experience and anticipates the expected decline based on known history of disease

and the patient’s care context. Predicting is both art and science in that the clinician uses

intuition and past experiences along with the previous step-wise factors to conceptualize into the

future what the anticipated decline and location of care will be for an individual.

Theresa: It was just going to be a matter of time.

Louise: That lady did declare herself after a couple of weeks.

Thelma: Somebody that was managing with help and a scooter two weeks ago and now

cannot do anything and we can’t change, we can’t stop the downward trajectory.

Louise: When a person is actively dying it is usually pretty obvious.

Patricia: I think in order to do justice to him we want to find the right place for him and

meet his needs. Right now I’m not confident that it is a hospice.

Stacey: I think there is something to be said for intuition and experience…It sure would

be nice to have one sound scientific method for some of the stuff but in truth I don’t know

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if we will ever, we might be able to get a bit better in terms of narrowing things down

more than we have now. I don’t think we will ever be that great because I think people

leave this world like they come into this world. I think there is parts of this that we’ll

never know. So how is that for ambiguity?

Pronouncing. The decision determined, the PCN shares their prognostic timeline with

patients, families and the health care team. Pronouncing occurs in the present time but is offered

in ranges of time.

Louise: There is no point in beating around the bush. There is no point in leaving things

misunderstood. I am probably clear. This is what looks like is happening, to me.

I will ask them what is it they need to know. Or what are they needing to plan for- if the

time was short?

Ann: I’m softer with them. In my head I’m going…well I don’t think this has got longer

than a week or two and I’m fairly honest but I’ll really soften it.

Bacall: Most clinicians are a little bit more callous. You know? You try to be gentle but

yet truthful.

Stacey: I don’t know for sure how much time you might have. I don’t think we are looking

at many, many months.

Thelma: He is clearly dying…I would say we’re in the final days. The closer you get to

the end, I think the easier it is to be precise than at three months, six months, twelve

months.

Patricia: It could just be hours, or days.

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Stacey: If you estimate someone is going to pass away within a certain time and they

outlive that prognosis you know they are not always happy about that.

Significance of Finding Three

Participants expressed the ‘how’ or process of prognostication as though moving through

a mental checklist by which they followed. The process emerged clearly and was easily

recognized in the first round of line-by-line coding by the researcher. The clarity of this process

is most likely explained by the PCN being mentored by physician and nurse clinicians when

orienting to their role. It would stand to reason that when learning this work, a standard way or

practice norm of doing the work would be taught and shared accordingly. The process is linear

and step-wise, moving through known tasks, observing and gathering information to be able to

garner a prediction and pronouncement.

There were noted nuances between clinicians over the importance of specific factors over

others. For example, some PCN regard specific biological measures as more important to

consider than others who may look at a patient’s oral intake and the presence or absence of the

symptoms. There was no clear standard of the weighting of these factors in prognostication

among PCN and can best be attributed to individual experience and preferences toward specific

types of chronic illnesses. For example, a focus on lab work for renal function in a patient with

kidney disease.

Additional key concepts that emerged were expected. They reflected the required

information to obtain the PPSv2 clinician score, the score required by clinicians to apply for

hospice placement. The score is based on the rating of the person’s ability to ambulate, their

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activity and evidence of disease, self-care, and intake and level of consciousness (Downing,

2006, pp. 120-121).

Clinicians spoke of added prognostic tools they sometimes use in a supplementary way

with the PPSv2 and include the ECOG (Eastern Cooperative Oncology Group) and PPI

(Palliative Performance Index). While the prevalent clinical tool used within our practice team is

the PPSv2 (Palliative Performance Scale, version 2) there are a wide variety of added tools that

individual clinicians may prefer and way during the process of assessing and trending.

Using additional performance status tools and disease-specific tools reinforces the

uncertainty of clinicians in prognosticating in chronic diseases and the desire by those clinicians

to obtain sufficient clinical evidence to conceptualize and predict an accurate prognosis.

Participant Observations

There was no similarity with order of tasks or questioning between clinicians nor use of

the same language or rote scripting of questions. What was strikingly similar amongst most PCN

was the non-verbal attention to location and position of self to the patient and family and the use

of positive eye contact and calm demeanor. The overwhelming majority of participants

disregarded the passage of time. I believe these attributes provided a strong early connection in

establishing PCN to patient and family rapport.

Observation of the majority of participants demonstrated mindful, active listening and

engagement during the patient and family interactions. Only one participant was observed to

distinctly lack a skilled and mindful nurse-patient interaction. The observations of the PCN doing

the work of prognostication reflected the second step of the DM process of prognostication

labelled exploring in the Conative (Volition) Factors of the theoretical model.

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Observation of Presence

The overwhelming majority of PCN were observed to use skilled interpersonal

communication to establish and build rapport with patients and families for specific outcomes.

These outcomes included ascertaining patient values and wishes around treatment, interventions

and the understanding of the illness by the patient and family. This created the opportunity for

providing support to the individual and family in preparing for dying and making key end-of-life

decisions, including location of death. The majority of PCN were observed at obtaining clinical

markers which aids in the formulation and conceptualization of prognostication such as the

functional abilities of the individual in the present time to compare with their past functionality.

Karen: I think a palliative nurse is always thinking where they are at when they meet a

patient because it also guides how you’re going to speak to them and what you’re going

to talk about.

Sally: I help family members cope with things that are going on, making end-of-life

decisions. Thinking about the future with their symptoms and illness. Helping them see if

they meet the criteria to go to hospice.

Ann: A lot of it is feeling your way through conversations and by saying to people- what

do you understand is happening with you now?

The Central Phenomena: Temporizing Uncertainty

This research showed how the interrelating affective and cognitive psychological factors

impact prognostic DM within the context of highly unpredictable illnesses. As previously shared

in Figure 4.1, the DM process of prognostication at first appeared to be a basic step-by-step left

to right linear process, highlighting key concepts related to the how PCN prognosticate.

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Following the second, first-line coding activity, I was intrigued by the level of

uncertainty expressed by PCN in this work, in spite of many years of experience. It was

memoing on participant Ann that made me realize that the process had additional characteristics

not previously elucidated. Particularly, Ann said “I don’t like making rapid decisions” and “I am

happy to keep someone on if it takes two or three weeks to see how they are going to do”. These

comments triggered the thought that the conative process in the model had additional DM steps.

On a review of the remaining participant transcripts, I discovered that there was a

consistent articulation of the concept held by Ann, which I interpreted as a bifurcation in the

known prognostic process at the point of trending. In the initial model of the process of

prognostication by PCN, I visually represented the DM moving from trending which was

comparing the status of the patient in the present tense with how they performed in the near past

to a prediction and pronouncement. However, it became evident on analysis that there were two

distinct types of trending. Trending back in the initial process and a trending forward which

demonstrates a stalemate decision in present time. DM was therefore deferred until a future point

in time. ‘Temporizing Uncertainty’ captured the centrality of this phenomena.

Temporizing Uncertainty is based on two distinct thoughts. First, the word temporize (v.)

is from Latin meaning “to delay time” (Online Etymology Dictionary). Next, the word Uncertain

(adj.) means “to lack confidence” (Online Etymology Dictionary). These words combined create

the thought that is the central phenomena. PCN hold off on prediction and pronouncement of the

prognostic process by delaying the timeframe of DM to a future time and is evidence of a lacking

of confidence in the present time DM.

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DM is a rational, sequential process that includes identifying a problem, evaluating

possible choices and choosing one of those choices (Cerit & Dinς, 2012, p. 201). Temporizing

Uncertainty represents the DM process when it is unable to be completed, and a choice cannot be

determined by the clinician, due to an inability to make that choice based on a variety of

interrelated factors.

Adams, et al. (2011) reported that one of most difficult things to manage with patients

and families at end-of-life, is prognostic uncertainty (p. 1). They suggested that physicians and

nurses worry if they make a wrong decision it will steal the hopes of the patient and family as

well as infer that the medical team is giving up (p. 1). This creates an environment of emotional

stress for both the patient, family, and health care team (p. 1).

Temporizing Uncertainty, therefore, could be a strategy by which PCN default DM in the

present moment in order to maintain hope and control an emotionally stressful encounter. It is

reasonable to consider that the PCN, who is just starting to build a trusting rapport with the

patient and family wishes to temper the time so that the negative connotations of death and dying

are meted so as not to infer giving up on the patient. This notion is supported by Norton and

Bowers (2001) who reported that health providers consider building rapport and establishing

trust as fundamental to helping patients move from a perspective of curative care to one of

palliative care (p. 263). In order to be the advocates of care, fulfill the nursing role of

communicating prognosis, supports hope, and quality of life the PCN takes care in the building

of trust and rapport (Adams et al., 2011; Kalowes, 2015; Newman, 2016; Reinke et al., 2016).

More compelling than the notion that DM is deferred to a future time by PCN due to their

awareness of the importance in building rapport and trust is the how one’s personal fears about

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death and dying likely affect one’s prognostic DM. Death anxiety is any negative feeling about

death and dying and is recognized as universal phobia (Pashak et al., 2017; Peters et al., 2013, p.

14).

If we have an unconscious angst provoked by the patient, it is little wonder that we are

less well primed to see and assess what their needs are. Death-related anxiety is an

important part of our psyche milieu. We are also uniquely unprepared as a society to cope

with death. This is why the needs go unmet, and the suffering is unnecessary. (Balfour

Mount in Lowry, 1997, p. 302)

Hare and Pratt (1989) reviewed research completed by Thompson in 1985 about nurses’

attitudes towards death and dying in acute care and found that PCN had higher death anxiety

than nurses who worked in curative settings (p. 350). Hare and Pratt (1989) suggested that it may

be more likely that the tool used to measure anxiety was actually lacking sensitivity and was

potentially measuring that PCN were more adept at being open in discussing death and dying (p.

350).

Though an older study, it is thought-provoking to consider for PCN practice, the potential

interrelationship between ongoing, multiple exposure to death and dying events and one’s own

death anxiety. One might even hypothesize that PCN by being exposed to multiple exchanges

with dying patients heighten their own unconscious awareness of mortality and subsequently

increase their death anxiety.

Research literature on death anxiety is primarily focused on the patient experience

however there has been some research that considers the health provider perspective. Death

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anxiety has been shown to impact clinician practices in various ways. Ciałkowska and

Dzierżanowski (2013) found that medical trainees had a diminished inclination to communicate

bad news with patients when they themselves had a greater fear of their own death (p. 131).

Deffner and Bell (2005) found that nurses’ death anxiety negatively impacted their

comfort in communicating about death and dying with patients and families. Nurses with more

experience in nursing and who had access to education on having difficult conversations felt

more confident in communicating about death and dying (p. 22). Individuals who tended to be

more anxious in life tended to report a higher lack of confidence in speaking to patients and

families about death and dying than those without (p. 23). Cooper and Barnett (2005) posited

that nurses are deeply affected by caring for the dying yet do not share these experiences as a

means of coping (p. 430). Younger age of the nurse has been previously linked to personally

higher death anxiety (Deffner & Bell, 2005; Lange, Thom, & Kline, 2008; Zyga et al., 2011).

In Peters et al. (2013) emergency department (ED) and palliative care nurses (PCN) in

Australia were compared and found that both nursing groups had moderate death anxiety in their

clinical practices. The emergency nurses were found to have higher death avoidance behaviours

and reported lower coping in taking care of dying patients and their families compared to the

PCN (p. 157). Of note in this study, however, was that the PCN were ten years older than the ED

nurses and had greater years of clinical experience (p. 154). Clinical practices for both groups are

diverse by virtue of their role. PCN have greater experience in expected deaths versus ED nurses

whose experiences are often the sudden and traumatic, unexpected deaths. Therefore, one would

suspect that supporting an unexpected traumatic death would be a completely different

experience than a death following a natural or expected trajectory.

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In contrast to the above noted literature, Sinclair (2011) found that front-line palliative

care professionals having repeated exposures with death and dying explicated that these

exposures were positive in nature. Participants expressed that being with the dying fostered

meaning in their personal lives by being able to live in the present, foster spirituality, and

consider continuity of life (p. 186). Of added interest, Desbiens and Fillion (2007) found that

meaning-making was a common coping strategy for palliative care nurses confronted with

regular bereavement. Meaning-making could positively impact one’s psyche, even in stressful

circumstances (p. 299). Both studies recognize the emotionally laden work of palliative care.

Temporizing Uncertainty with a deferred or delayed DM by PCN with purposeful future

trending may serve dual purposes. First, it takes the immediate pressure off the patient and

family to make an EOL decisions about location of death and allows for the meeting time to be

about the development of clinician-patient relationship, which is highly valued by PCN (Evans,

& Hallett, 2006, p. 749). The PCN can thus use the interaction to focus on helping assist the

patient transition from curative care to palliative or to explore the wishes and values of the

patients (p. 749). The PCN can focus on the comfort aspects of care such as pain and symptom

management (p. 746). Additionally, it may prevent further escalation of emotionally driven

patient-family-clinician conflict (p. 747).

Secondly, by deferring the DM, the PCN is taking away the immediate pressure of

making a potentially incorrect decision. When the clinician trends forward by deferring DM they

may not be the clinician who ultimately decides the predication. Thus, they would no longer be

responsible to the patient, family, and healthcare team for the pronouncement. Therefore, by

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trending the DM into the future, the clinician does not have to be the bearer of the bad news,

which is often the emotionally heavy laden prognosis.

In this research study this discovered secondary process of delayed DM is specifically

connected to the ambiguity and DM of prognostication of chronic illnesses. The one exception to

this added process is when the PCN recognizes the patient intuitively to be imminently in their

EOL period. When the PCN is aware of imminent dying the initial process presented in figure

4.1 reflects what the DM of the PCN. The PCN values preparing the patient and family for dying

and would be able to move decisively to prediction and pronouncement accordingly. Similarly,

the process for prognostication in cancer diagnoses, being a trajectory that is far more predictable

for clinicians would likely also follow the step-wise rightward moving process as presented in

figure 4.1.

Peters et al., (2013), in a review of the literature about how death anxiety impacts the care

of patient at end-of-life, concluded that the role of an advanced practice PCN is one of

demanding emotional work that requires not only clinical skills but nurses with personal insight

into their own beliefs about death and dying (p. 20). Advanced practice PCN are at a high risk of

work stress and burnout, especially if they cope using negative emotional management strategies

such as avoiding or suppression (p. 20). I suspect that delaying DM is a strategy that may reflect

a way to manage personal emotions about a given patient context. Clinicians may have difficulty

caring for specific patients based on their own personal experiences of death and dying (Huang,

Chen, & Chiang, 2016, p. 109).

In Health professionals and death: emotions and management ways, authors Aisengart

and Pires (2006) reviewed the evolution of death and dying in western society in the 20th century

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and the way in which health professionals manage their emotions. First, traditional death has

moved from being experienced in homes into hospitals. Dying has gone from being a visible

reality in community life to an experience that is hidden and controlled by medicine (p. 4). Next,

death has become medical work and has all but eliminated the previous meanings of sacredness

(p. 5).

Palliative care was introduced as a counter-medical concept of what constituted a good

death which considered the whole person over merely a disease process (p. 6). Palliative care is

centered on the comfort of the patient in relationship with the health professional, a new habitus

(p. 7). However, there is a tension that palliative care professionals have been trained in the

biomedical model and now must learn, adhere, acquire and follow this new identity, sometimes

at the cost of collegial discrimination (p. 8).

According to Menezes and Pires (2006), foundational to palliative care is the

communication of pertinent information in order to decrease uncertainty of the patient and

strengthen the patient-clinician relationship (p. 12). The emotional impact of working with dying

and suffering is tempered by the goals of achieving a good death for the patient (p. 14).

Frustration and suffering occurs when this ideal cannot be realized. Young age and unrelieved

suffering are such factors that may prevent a good death (p. 15). Excessive exposure to caring for

the dying can negatively impact the emotions of the palliative care practitioner (p. 16).

Temporizing Uncertainty underscores how emotions can drive judgement, choices and

DM (Lerner et al., 2015). A time delay is a means by which an individual employs the strategy

of letting time pass before making a decision in order to reduce the severity of the emotional

effects (Lerner et al., 2015, p. 811). Individuals with certainty-associated emotions have been

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shown to make safer decisions than those with uncertainty-associated emotions (Bagneux,

Bollon, & Dantzer, 2012). This may further explain why advanced practice PCN, who openly

expressed uncertainty in prognosticating in chronic illnesses, used delaying time as a tactic to

make the future prognosis a safer decision.

Yip and Côté (2013) suggested that the means by which individuals can mitigate

incidental anxiety; that anxiety which is perceived by the person as being caused by events they

cannot control is through emotional intelligence (p. 49). Individuals with higher emotional

intelligence were able to distinguish that their anxiety was based on previous events that had no

relevance to the current DM (p. 50). There is the potential that awareness of one’s emotions and

previous anxieties while undertaking DM in prognostication can help mitigate the severity of

future DM (p. 54).

Divergent Findings to Temporizing Uncertainty

The central phenomena of Temporizing Uncertainty emerged from the data analysis and

interpretation of the coded interviews, participant observations, field notes, and memos. These

finding were grounded in the data and were not forced. However, I was intrigued to discover that

one participant of the nine observed was divergent from the rest.

The initial intention of this study was to understand the experiences of PCN in their work

of non-cancer prognostication and to that goal participation was sought of all PCN that do this

work in their daily role. The recruitment of PCN was sought from all care sectors within the local

palliative care program. This areas included PCN working in acute care, home care, palliative

intensive care and long-term-care, and supportive living. Inclusion criteria sought participants

who had one year clinical experience minimum, ensuring that they would have the work

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experience of having to prognosticate in their role in transitioning a patient into hospice care and

would be familiar with the PPSv2 performance tool accordingly.

The participant with divergent findings was the sole participant who was not an in an

advanced practice PCN role. Although this PCN was advanced in that she had many years of

clinical experience in palliative care and was familiar with the task of waitlisting a patient for

hospice she was the only participant in a front-line nursing role. The experiences of this work for

this PCN was distinctly different than the other participants. This realization supported the

findings that this study had theorized and the theoretical model reflected the process of

prognostication and complex DM of advanced practice PCN.

Karen diverged from the other participants in two distinct ways. She did not complete the

process of prognostication as presented in the theoretical model in Figure 5.1. Her transcribed

interview codes reflected a partial process, which excluded the prospecting trending, prediction

and pronouncement aspects of the process. This conative portion of these key components

underscore the central phenomena. Furthermore, when unable to ascertain whether a patient fit

the criteria of hospice placement she deferred the DM to either another palliative clinician,

advanced practice PCN or a palliative physician.

Karen: I got in trouble over a patient… I had reviewed a patient on rounds with the

palliative physician and he determined that she likely had a prognosis of one to two

weeks, and the CNS thought so too. I had talked to them all about that at rounds so to me

this was an end-of-life patient. So here I am at the charge desk and I know this family and

the husband called in a panic and said they were not coping and I sent her to hospice

directly. (Interview)

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These differences could be attributed to a number of factors. The frequency of non-

malignant prognostication in her setting as a front-line PCN in home care would be greatly

diminished in comparison to malignant. It is probable that although her palliative care nursing

experience numbered many years that experience had a strong focus on predominantly

supporting patients with cancer diagnoses. Also, advanced practice PCN spend time in orienting

to their work of prognostication with experienced advanced practice PCN. Front-line PCN in

home care might not have such orientation to this work. Therefore, as there may have been less

confidence about non-malignant prognostication she defaulted the DM to other colleagues with

whom she may have felt had more knowledge or practice experience.

Karen: well, I think there is not enough education about the chronic diseases you know?

I think that we tend to get a lot of education in palliative care about the cancer and the

pain control but I think we need more in-services, especially about cardiac illnesses. I

find the palliative nurses, you know, it’s kind of a deficit and I think we need more

education about ALS and more education about COPD because I think when those

patients come to us, you know, we don’t have as much knowledge as we could because

they are one off type patients. (Interview)

Karen: I find that CHF is very difficult to do the prognosis and see the trajectory and the

same with COPD-that’s another one, but now we have a COPD specialist who is really

helpful. (Interview)

Following the observation, Karen stated that she was sure the patient visited was

inappropriate for the palliative home care team and should be returned to another home

care team. She asked me my opinion as to what I thought his prognosis was. Taking an

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additional twenty minutes in the privacy of her vehicle we reviewed his primary and co-

morbid conditions, symptom burden, performance status, hospitalizations and laboratory

work, it was clear that the patient was entering his imminent EOL period and

appropriate for palliative home care. (Memo, Karen Observation)

The second area where Karen showed divergence to the group was in her observation.

Field notes and memoing captured that Karen was the sole participant that chose to create a

physical barrier between herself and the patient with her laptop and portfolio case. According to

field notes and memos, Karen had little eye contact with the patient, and leaned away from the

patient. In the course of the interaction Karen directed the conversation through a list of tasks to

complete in this initial home visit. Unlike Karen, the remaining participants who allowed the

patient to direct the conversation and used engaged and mindful practices of communication.

The PCN had a very large portfolio that contained her patient information as well as her

laptop. Both served as creating a physical barrier between the patient and PCN. The

PCN spent little time actually looking at the patient. The conversation was directed by

the PCN and followed her script, which included a review of his symptoms and discharge

summary all from the vantage of her laptop. Her head was focused on her paperwork and

laptop during the conversation. The patient attempted to make eye contact with the PCN

and then being unsuccessful, redirected his attention to the researcher. (Karen, Field

notes, Observation)

Karen articulated that prognostication was an important task for PCN. However, this

work as presented in the above examples clearly demonstrated that her experiences were

distinctly different from the advanced practice PCN participants. Unfortunately, as there were no

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other participants in similar clinical positions with which to compare, one must be cautious in

determining whether these divergent practices are common or merely a reflection of one

individual clinician’s practices. Furthermore, it could additionally reflect the complexities of the

patient case that was presented at that given time. Future research would be appropriate to

confirm or deny these findings.

Discussion

The work of prognostication will continue to be in demand in order to assist in DM by

patients, families and the healthcare team. This study illuminates how advanced practice PCN

value the work of preparing patients and families for dying, Supporting Symptoms, enhancing

quality of life, and transitioning to a preferred end-of-life location. The bifurcated process of DM

by advanced practice PCN in non-malignant prognostication underscores the complex, affective

and cognitive work with chronic illnesses and how they halted DM due to the ambiguous nature

through temporal deference.

Though this work is remarkably complex and challenging, it is valued by patients,

families and the healthcare team. Advanced practice PCN articulated motivating (affective)

factors that reflect who we are as palliative care clinicians. They desire to provide the best,

accurate prognosis which reflected core values. These core values reflected optimizing

opportunities to support life review, legacy work, and choice in the EOL location.

The extant literature highlighted theories of explanation behind the emerged phenomena

in this study. Death anxiety is a universal fear of dying. One’s own experiences with personal

loss can impact how one copes, or not with their dying patient. The demands and expectations of

the palliative care role in the context of a medicalized society may be an ongoing tension

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between pursuing a so-called good death and the reality of having a system that pursues curative

measures at all costs. Lastly, the constant exposure to the deaths of others impacts how a

clinician undertakes DM in their professional practice.

Concluding Summary of the Interpreted Findings

In this chapter I presented through the voices of the participants the interpreted theory of

‘Temporizing Uncertainty’, and the theoretical model which visually represents the interpretation

of the experiences of advanced practice PCN in prognosticating in non-malignant illnesses. I

further explored and presented the significance of each finding as the interrelated affective and

cognitive psychological factors that impacts the DM through the conative processes. Extant

literature was incorporated in order to deepen the understanding of this emotionally demanding

work, and the process, along with the factors that impact the complex DM for this particular

group of advance practice nurses.

The strength of this research is in providing a glimpse into the unique process of

prognostication and DM by advanced practice PCN in non-malignant illnesses. Although some

may consider a delayed decision in prognostication as a weakness in the advance practice PCN

DM, I consider that this could be a potential opportunity to move prognostic work upstream to

the healthcare team that could aid in the DM in the future.

Limitations

I acknowledge that this study has many limitations. First, the sample of participants was

small, comprising of 11 interviews and 9 observations. Therefore, it is representative of only one

group with a common professional identity, with known norms of practice. Second, the sample

was homogenous, with all participants being Caucasian and female. Ten of 11 participants

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worked for the Palliative Care Consult Service and provided consultant support to individuals in

private homes, long-term care, and supportive living, and acute care facilities. Only one PCN

maintained a patient case-load in their role in the Palliative Home Care Program.

It had been hoped to have had participants from the Intensive Palliative Care Unit.

However, I was unable to garner interest, even following multiple recruiting efforts. Had I had

representation from these clinical areas including male advanced practice PCN, it may have

altered the interpretation of the experiences and this situated story of prognostication in non-

malignant illnesses.

This work is an interpretation and theorizing of one potential truth based on the

researcher’s own lens of knowing this work intimately. Journaling and memoing along with self-

reflection and discussion with my supervisor was key in maintaining clarity in order to fully

comprehend what emerged in the data and subsequently represents the voices of the participants.

In the subsequent and final chapter I present the recommendations for future practice,

research and what this research has contributed to nursing knowledge.

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Chapter Six: Implications for Practice and Recommendations

Never, before, in our country, have we had to contend with the impending and

intimidating numbers of chronically ill and aging population. In 2016, there were approximately

1.5 million Canadians over the age of 80 with a projection of 3.3 million by 2061 (CHPCA,

2018). Additionally, it is estimated that by 2061 it is projected that there will be between 11.9

and 15 million Canadians over the age of 65 (CHPCA, 2018). Furthermore, current data

suggests that 6 in 10 Canadians either personally suffer from a chronic illness or have a sufferer

in their immediate family (CHPCA, 2018).

Canadians with non-malignant illnesses can live for many years following diagnosis with

symptoms and disability. The trajectory of chronic diseases is uncertain in determining when

their imminent end-of-life will occur. As discussed in this research, the aging population which

is continuing to grow demonstrates the ongoing need to ensure access to Palliative Care which

promotes quality of living and supports for a good death. The importance of prognostication will

continue to frame the end-of-life interactions experienced by advanced practice PCN and their

patients.

Advanced practice PCN are uniquely situated in clinical practice to prognosticate in non-

malignant illnesses and as presented this DM is complex and subject to many factors. They will

thus need ongoing support in learning in understanding these factors that can hinder achieving

the valued predicted accuracy. Accurate prognostication, links to many foundational values of

advanced practice PCN that ensure patient’s transition towards death is one that supports quality

of life and a good death.

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Recommendations for Practice

• All PCN who have the role of assessing and wait listing patients for hospice transfer

would benefit from a formal subject-oriented education on prognostication. Education

would include learning the known trajectories of illnesses, known tools, and models

available to assist with clinician prognostication.

• Advanced practice PCN would benefit from ongoing informal and formal education on

intercurrent illnesses, and treatment modalities that may change known chronic illness

trajectories.

• Advanced practice PCN value collaborative practices and would benefit from

opportunities to share and learn from each other about their practice experiences in

prognostication and DM.

• Advanced practice PCN newly hired into their role may benefit from a formal mentoring

relationship for expert support in prognostication for the initial year of employment.

Recommendations for future Research

• To test the theoretical model of Temporizing Uncertainty, future studies could focus on

advanced practice PCN prognostication in non-malignant illnesses which tracks the DM

pronouncement of the advanced practice PCN with the actual time of death. This may

illicit greater understanding of the duration of the temporizing and why or what occurs in

association with the end of temporizing.

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• To test the theoretical model of Temporizing Uncertainty, a future study could compare

the work of prognostication between front-line PCN in care settings with advanced

practice PCN.

• To test the theoretical model of Temporizing Uncertainty, a future study could compare

complex DM in other disciplines such as Psychology.

• Future studies of the DM of advanced practice PCN prognosticate in non-malignant

illnesses could focus in other health regions in Canada and internationally in order to

compare findings.

• Future studies of the DM of advanced practice PCN prognostication in non-malignant

illnesses should include more ethnically diverse and male participants. This could

generate findings that demonstrate how ethnicity and gender might influence DM.

• Future studies of the DM of advanced practice PCN in the process of prognostication in

non-malignant illnesses could include clinicians from added practice settings, beyond the

ones represented in this study. This could generate additional knowledge in how the

system impacts individual clinician DM.

• Future studies could focus on how educational interventions change DM in advanced

practice PCN prognostication in non-malignant illnesses.

• Future studies could compare the DM of advanced practice PCN and physicians in

prognostication in non-malignant illnesses and explore whether palliative care physicians

also practice temporizing uncertainty.

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Contributions of this Study:

• This is the first Canadian study that recognizes the work and DM in prognostication by

advanced practice PCN.

• This study is unique in using a constructivist grounded theory design producing an

emergent theory of ‘Temporizing Uncertainty’. It is the first study to provide an original

theoretical model to explain the process and DM of prognostication of non-malignant

illnesses by advanced practice PCN.

• The understanding of the bifurcated process of DM by advanced practice PCN with the

phenomena of ‘Temporizing Uncertainty’ may provide future opportunity in trending in

the clinical practice setting by health care teams beyond Palliative Care Clinicians.

• This study highlighted how other valued work, such as end-of-life location influenced the

DM process.

• The theorizing generated in this study is original in the DM process of prognostication.

• The theorizing generated will enable the advanced practice PCN to broaden their

understanding of the complexities of DM and that ‘Temporizing Uncertainty’ can

improve their DM in prognosticating in non-malignant illnesses.

• ‘Temporizing Uncertainty’ demonstrates that DM in prognostication in non-malignant

illnesses is complex. It further underscores that DM is not always a linear process and

need not be in order to be pragmatic.

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Conclusion

I would like to conclude my dissertation with the recognition of my own learning

about advanced practice PCN prognostication in non-malignant illnesses. The phenomena

of ‘Temporizing Uncertainty’ may well be attributed to clinician reluctance to be wrong

in prognosticating and also influenced by the universal fears of one’s own death. I do

believe regardless as to the why DM is delayed for a time, this practice is valuable to me

as a front-line clinician in prognosticating. It further provides a unique opportunity to

move the work of future trending of one’s clinical status in a structured way by a

patient’s attending team before a referral is requested from Advanced practice PCN for

prognostication.

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159

CINAHL (n=10)

(n = 10

Scre

enin

g In

clu

ded

El

igib

ility

Id

enti

fica

tio

n

Articles after initial screen (n=124)

(n =124)

Records after duplicates removed (n = 48)

Records excluded (n =76)

Full-text articles assessed for eligibility

(n = 48)

Full-text articles excluded, with reasons

(n = 32)

Qualitative studies (n = 15)

Quantitative studies (n = 2)

Total Studies (n = 17)

EMBASE (n=148)

(n = 148)

Ovid MEDLINE (n=127)

(n = 127)

PsycINFO (n=10)

(n = 10)

PubMed (n=121)

(n = 121)

Appendix A

Literature Search Flowchart

160

Appendix B

Study Search Terms and Inclusion Criteria

Search Terms:

• Prognostication or prognosis or survival estimate or mortality

• Palliative Care or end of life care or terminal care or dying or advanced illness or serious

illness

• Chronic illness or chronic disease or long term conditions, or chronic conditions or

chronically ill

• Process or task or function or role

Search terms were all combined with nursing or nurses or nurse

Inclusion criteria:

• Study conducted in adult population.

• Study must be published in the English language.

• Study occurred between 2008 and present time.

• Studies with a focus on chronic cancer diagnoses were excluded.

161

Appendix C Table 1

Quality Appraisal of Studies using the Specialist Unit for Review Evidence (SURE) checklist (2013)

Qualitative Studies

Study

Checklist Ad

ams,

Bai

ley,

An

der

son

& D

och

erty

, 20

11

Cla

rke,

Ew

ings

, Han

na,

D

un

n e

t al

., 2

009

Cla

rkso

n, S

elb

y &

M

yers

, 201

2

Cu

rtis

, En

gelb

erg,

Yo

un

g, V

ig e

t al

., 2

008

Do

wn

ing,

Lyn

d,

Gal

lagh

er &

Ho

ens,

20

12

Gal

lagh

er, B

ou

sso

,

McC

arth

y, K

oh

len

et

al.,

201

5

Hje

lmfo

rs, S

trö

mb

erg,

Fr

ied

rich

sen

,

Mår

ten

sso

n &

Ja

arsm

a, 2

014

Kal

ow

es, 2

015

Mar

tin

& K

oes

el, 2

010

Mili

c, P

un

tillo

, Tu

rner

, Jo

sep

h e

t al

., 2

015

Does the study address a clearly focused question/hypothesis?

Is the choice of qualitative method appropriate?

-- --

Is the sampling strategy clearly described and justified?

Is the method of data collection well described?

Is the relationship between the researcher(s) and participants explored?

Are ethical issues explicitly discussed? Is the data analysis/interpretation process described and justified?

Are the findings credible? -- -- --

Is any sponsorship/conflict of interest reported?

Did the authors identify any limitations?

Yes, No, Cannot tell –

162

Appendix C

Table 1

Quality Appraisal of Studies using the Specialist Unit for Review Evidence (SURE) checklist (2013)

Qualitative Studies

Study Checklist N

ewm

an, 2

016

Po

nti

n &

Jo

rdan

, 20

13

Re

inke

, Sh

ann

on

, En

gelb

erg

&

You

ng,

201

6

Two

mey

, O’L

eary

&

O’ B

rien

, 200

8

Wal

dro

p &

Mee

ker,

200

9

Wal

dro

p &

M

eeke

r, 2

012

Wel

ch, M

iller

,

Mar

tin

& N

and

a,

2008

Does the study address a clearly focused question/hypothesis?

Is the choice of qualitative method appropriate?

Is the sampling strategy clearly described and justified?

Is the method of data collection well described?

Is the relationship between the researcher(s) and participants explored?

Are ethical issues explicitly discussed? Is the data analysis/interpretation process described and justified?

Are the findings credible? -- -- -- Is any sponsorship/conflict of interest reported?

Did the authors identify any limitations?

Yes, No, Cannot tell –

163

Appendix D

Table 2

Literature Review Studies

Study Location Objective Design Methods Findings Limitations

Adams,

Bailey,

Anderson &

Docherty,

2011

Durham,

North

Carolina

To analyze the

literature

concerning

nurses’ roles

and strategies in

EOL decision

making in acute

care

environments,

synthesize the

findings, and

identify

implications for

future research

Literature Review This paper of the

literature covers a

15-year period

from 1996 to 2011,

to capture literature

published

following the

SUPPORT [16]

study, a seminal

work on this topic.

Three nursing

roles emerged

from the synthesis

of the literature:

information

broker, supporter,

and advocate, each

with a set of

strategies nurses

use to enact the

roles

Not all the studies

were focused

specifically on

nurses but rather

healthcare

providers in

general

All but one were

retrospective in

nature, none were

observational

Inclusive of

cancer dx

Clarke,

Ewings,

Hanna, Dunn

et al., 2009

Cornwall,

UK

determine the

consistency,

accuracy and

precision with

which doctors,

nurses and

medical

Actuarial analysis Questionnaire Doctors, nurses

and medical

students were

inconsistent,

inaccurate and

imprecise in their

prediction of LE

Hypothetical

patient scenarios

were used

Used actuarial

versus actual

survival data

164

students predict

life expectancy

with a tendency

toward

underestimation.

Clarkson,

Selby &

Myers, 2012

Toronto,

Ontario,

Canada

The objective

of this study

was to gain a

deeper

appreciation of

this process by

identifying and

exploring the

specific

elements that

may inform

and/or impact a

clinician's

estimate of

survival (CES).

Grounded Theory Semi structured

interviews were

conducted among a

group of palliative

care clinicians in

the setting of a

tertiary academic

health sciences

centre.

5 major themes

that affect CES:

-Use of objective

patient-specific

elements

(Albumin,

Performance

status)

-The patient-

clinician

relationship

(Depth of rapport)

-Purpose and

context of an

individual CE

(Obtaining

services)

-Perceived role of

hope

-Likelihood of

CES inaccuracy

Participants were

from one location

Participants were

full time

Palliative Care

(no other

discipline)

Clinician

awareness of

variables that

impact decision-

making was

subjective.

165

Study Location Objective Design Methods Findings Limitations

Curtis,

Engelberg,

Young, Vig

et al., 2008.

Seattle,

Washington,

U.S.A

To examine the

perspectives of

patients, family,

physicians, and

nurses on the

simultaneous

need for

supporting hope

and discussing

prognosis.

Grounded theory

was used to

analyze the

transcripts and

evaluated a

conceptual model

with four

diagrams

depicting different

types of

approaches to

hope and

prognostic

information

Longitudinal

qualitative

interviews with

patients with either

advanced cancer or

severe chronic

obstructive

pulmonary disease.

55 patients, 36

family members,

31 physicians, and

25 nurses

This study found

important

variability in the

ways different

patients with life-

limiting illnesses

approach the

interaction of

wanting support

for hope and

prognostic

information from

their clinicians.

Not compared to

other studies

The proportion of

conceptual model

preference by

participants is

unknown.

One geographical

region and

participants were

mostly Caucasian.

Purposive

sampling

Downing,

Lynd,

Gallagher, &

Hoens, 2012

Victoria,

B.C, Canada

To inform the

health care

provider's

response to the

common

question asked

by older adults

with advancing

illnesses, 'How

long do I have?'

and to provide

caregivers with

Presentation of a

10 Step approach

for

prognostication

Comparison of

Prognostic tools

Prognostic tools

and symptoms that

have been shown

to have predictive

value are:

delirium,

persistent

tiredness, weight

loss, shortness of

breath, dysphagia,

and skin

breakdown.

166

a framework

which can guide

provision of

care in

advancing

illness. Both

purposes are

addressed by

exploring 3

major concepts

associated with

declining

functional

ability

Laboratory

markers including

white blood cell

count,

lymphocytes,

lactate

dehydrogenase,

albumin, C-

reactive protein.

Study Location Objective Design Methods Findings Limitations

Gallagher,

Bousso,

McCarthy,

Kohlen et

al., 2015

5 Countries:

Brazil,

England,

Germany,

Ireland and

Palestine

To understand

nurses’ EoL

decision-

making

practices in

ICUs in

different

cultural

contexts.

Grounded Theory Semi-structured

interviews

51 nurses (10 in

Brazil, 9 in

England, 10 in

Germany, 10 in

Ireland and 12

nurses in Palestine

The core category

that emerged was

'negotiated

reorienting'.

Whilst nurses do

not make the

'ultimate' EoL

decisions, they

engage in two core

practices:

consensus seeking

(involving

coaxing,

information cuing

Purposive

sampling

167

and voice

enabling); and

emotional holding

(creating time-

space and comfort

giving)

Hjelmfors,

Strömberg,

Friedrichsen,

Mårtensson,

& Jaarsma,

2014.

Linköping,

Sweden.

This study aims

to describe HF

nurses’

perspectives on,

and daily

practice

regarding,

discussing

prognosis and

end-of-life care

with HF

patients in

outpatient care.

It further aims

to explore

barriers,

facilitators and

related factors

for discussing

these issues.

Survey

SPSS and content

analysis/Literature

Review

A national survey

including nurses

from outpatient

clinics and primary

health care centres.

111 HF nurses

completed the

questionnaire.

(82%)

Although HF

nurses feel

competent

discussing

prognosis and end-

of-life care with

the HF patient,

they are hesitant to

have these

conversations.

Did not correct

for multiple

testing Additional

qualitative data

from open-ended

questions was

analysed using a

content analysis

approach. 26

Keywords and

phrases, derived

from the data,

were individually

and inductively

categorised into

barriers or

facilitators by the

researchers and

then discussed

until consensus

was reached.

Secondly, barriers

and facilitators

were deductively

168

sorted into

categories

developed from

an integrative

literature review

on end-of-life

communication.

Study Location Objective Design Methods Findings Limitations

Kalowes,

2015.

Long Beach,

CA, U.S.A

To provide an

overview of

effective ICU

prognostic

systems and

discuss

barriers and

opportunities

for

Nurses to use

evidence-based

knowledge

related to

disease

trajectory and

prognosis to

improve

communication

and the quality

of palliative and

Current

prognostic tools;

end-stage

clinical,

laboratory, and

diagnostic

markers; and

functional status

(FS) are reviewed,

to assist the

formation of a

prognosis.

Case studies and

Literature Review

Knowledge related

to disease

trajectory and

common

characteristics of

decline, such as

performance

status, and factors

associated with

prognosis, assist

Nurses to advocate

for patients at end

of life.

-Opinion piece

-Limited to ICU

Nurses only

169

end-of-life care

for patients.

Study Location Objective Design Methods Findings Limitations

Martin &

Koesel,

2010.

Charlotte,

NC U.S.A

To promote

effective

communication

when prognosis

is uncertain and

the goal of care

is unclear.

Case Studies

Literature Review

Nurses play a

pivotal role in

facilitating

communication

with critically ill

patients and their

families.

Nurses must be

proficient in

communication

skills in addition

to clinical skills.

Nurses can use

evidence- based

knowledge related

to disease

trajectory and

prognosis to

advocate

effectively for

patients and

families.

Directed to ICU

Nurses only

170

The nurse has an

essential role as a

team member

in establishing the

goals of care

Milic,

Puntillo,

Turner,

Joseph et al.,

2015

San

Francisco,

CA, U.S.A

The objectives

of the workshop

were to assess

understanding

of prognosis

and goals of

care by patients’

families;

communicate

the needs of

patients’

families to

physicians;

advocate for

family

members’

informational

and emotional

needs in a

family meeting;

and develop

skills for coping

with

A training

workshop on

communication

skills for critical

care nurses

On the basis of the

needs assessment

and previous

scholarly work,

a model was

developed for

bedside nurses to

facilitate

communication

about prognosis

and goals of care

among patients’

families and other

clinicians.

82 critical care

nurses completed

the workshop

Themes:

Clarification and

reinforcement of

nurses’ role and

responsibilities in

discussions of

prognosis and

goals of care

As a result of

practicing

communication

skills during role

playing, nurses

have a “tool kit” to

actualize their role

in discussions with

patients’ families

and physician

Nurses feeling

empowered to

voice concerns and

participate in

discussions about

Directed at ICU

Nurses

The evaluation

was limited to

surveys of the

participants and

did not include

observations of

the participants’

communication or

assessment of the

impact of the

program on the

patients, patients’

families, and

physicians with

whom our

participants

worked. Second,

our interventions

consisted of an

intensive yet

single classroom

171

stress, moral

distress, and

compassion

fatigue.

prognosis and

goals of care

Nurses have

increased empathy

for and feel more

connected with

patients’ families,

physicians, and

each other

As a result of the

workshop, the

culture in the

medical center is

changing so that

nurses are

centrally involved

in communication

session, a format

that may limit the

capability of the

workshop to

change

participants’

practice. Third,

although results

of the 3-month

follow-up

evaluation

indicated that

increases in skill

and confidence

were sustained

after the

workshop, the

response rate to

this survey was

low, a

characteristic that

limits

interpretation of

our data. Finally,

we conducted our

study at a single

academic medical

center.

172

Study Location Objective Design Methods Findings Limitations

Newman,

2016.

Milwaukee,

Wisconsin,

U.S.A

The aim of this

study is to

synthesize

published

literature

regarding

nurses’

perceptions and

experiences

with diagnosis

and prognosis-

related

communication.

Integrated

Literature Review

Electronic

databases

including

Cumulative Index

to Nursing and

Allied Health

Literature, Health

Sciences in

ProQuest,

PubMed, and Web

of Science were

used to review the

literature from

2000 to 2015.

Key roles of

Nurses with

prognostic

disclosure include

that of educator,

care coordinator,

supporter,

facilitator, and

advocate.

Most of the

studies presented

were descriptive,

survey designs.

No intervention

studies were

included.

Pontin &

Jordan, 2013

U.K To explore

hospital

specialist

palliative care

professionals’

experience of

prognostication

Qualitative

research

Focus Group

Interviews

Three UK hospital

specialist palliative

care teams.

Participants

included medical

doctors and

palliative care

nurses.

Inclusion/exclusion

criteria: member of

hospital specialist

palliative care team

Two major

themes:

Difficulties of

prognostication;

Benefits of

prognostication.

Eleven sub-

themes:

Difficulties (Non-

malignant disease;

Communicating

uncertainty;

Seeking definitive

prognosis;

The study

weaknesses are its

small-scale

qualitative design

using a purposive

sample from three

hospital specialist

palliative care

teams based in the

UK. It is not

possible to

determine

whether the

experiences and

173

with knowledge

and experience of

prognostication.

Numbers of

participants: four

hospital specialist

palliative medicine

consultants, three

senior doctors in

training, nine

clinical nurse

specialists.

Participants’

feelings;

Confidence in

prognostication;

Estimating

prognosis; Dealing

with reaction of

prognosis;

Prognostic error);

Benefits (Patient

informed decision-

making

prioritizing needs

and care; Family-

prioritizing

commitments;

Services accessing

funding and

services planning

patient care).

feelings expressed

by the participants

are common

amongst the wider

UK population or

beyond and

whether other

hospital specialist

palliative care

teams practise in

the same way.

Study Location Objective Design Methods Findings Limitations

Reinke,

Shannon,

Engelberg,

& Young,

2016

Seattle,

Washington,

U.S.A

Our objectives

were to 1)

describe nurses’

perspectives on

meeting

Patient’s needs

for hope and

illness

Grounded Theory Semi structured

interviews with 22

nurses

Three themes

emerged: 1)

Nurses support

patients’ hopes by

understanding

individual aspects

of these hopes,

focusing on

Did not assess the

prevalence of the

identified themes.

(Not

generalizable)

Nursing role

conceptualizations

174

information and

2) offer insights

for interventions

designed to

improve

communication

about end-of-

life care for

patients and

their families.

patient’s quality of

life, and building

trust with patients;

2) Nurses provide

prognostic

information by

assessing what the

patient knows and

following their

lead. Nurses report

doing these two

activities

independently; and

3) Nurses identify

activities

associated with the

provision of

prognostic

information that

required

collaboration with

physicians.

characterize

perceptions

There could be

differences in

perceptions

between chronic

and cancer

populations.

Study Location Objective Design Methods Findings Limitations

Twomey,

O’Leary &

O’Brien,

2008

Cork,

Ireland

Aim of this

study was to

compare the

ability of 5

professional

groups to

Prospective Study Clinicians

independently

completed a

proforma to predict

the length of

survival for each

The greatest errors

of prediction

related to

significant under-

estimation of

survival by senior

It is not a cohort-

based study and

patients with a

variety of ill-

nesses entered the

study at different

175

estimate the

survival of

patients

admitted to a

specialist

palliative care

unit.

patient admitted

within 48 hours

medical and

nursing staff and

highlighted a

difficulty in

accurately

identifying the

patients who

would survive for

between 1 and 3

months after

admission in

particular.

points between

diagnosis and

death.

Unequal numbers

of professionals

by category

Prediction

categories were

unequal lengths of

time

Waldrop &

Meeker,

2012

Buffalo,

NY,

U.S.A

This study

explored the

process of

decision making

about hospice

enrollment and

identified

factors that

influence the

timing of that

decision.

Exploratory,

descriptive,

retrospective,

cross-sectional

design

Semi structured

interviews were

conducted with 36

hospice patients

and 55 caregivers

after 2 weeks of

hospice care.

Unexpected

differences were

found by diagnosis

(cancer vs. other

chronic illness)

The theme of

“prognostic

eligibility”

illustrates the

common belief

that hospice is

only available for

people who have

cancer.

The preliminary

finding of

difference in

decision making

Purposeful

sampling

Does not know

how perceptions

may change over

time

Low participation

176

between people

with cancer and

other chronic

illnesses suggests

the need for

further focused

exploration of the

differences in

decision making in

congestive heart

failure, COPD,

and

neurodegenerative

disorders.

Study Location Objective Design Methods Findings Limitations

Waldrop &

Meeker,

2009

Phase I: to

observe hospice

team

communication

about patient

and family care.

Phase II to

gather hospice

professionals’

perspectives on

the appropriate

time for

admission and

on their

Ethnography

Ethnography of

team meetings

informed the

development of

questions for focus

groups and written

follow-up surveys

with 53 hospice

professionals.

Timely hospice

referrals were

conceptualized as

involving

Three interrelated

elements: (a)

terminal

prognosis, (b)

specific terminal

characteristics, and

(c) actual time.

Professionals

were from one

hospice

Perspectives were

professional staff

and not

physicians,

patients or

families

At one point in

time

(Longitudinal

might show

differing results)

177

communication

with physicians,

patients, and

families about

the transition to

end-of-life care.

Welch,

Miller,

Martin &

Nanda, 2008.

This study

sought to

understand

factors

influencing

hospice referral

or non-referral

as well as

timing of

referral.

Qualitative

Retrospective

Semi structured

interviews with

personnel from

seven participating

NHs and two

hospices. 34 NH

nurses, 30 NH

aides, and 17

hospice nurses

about 32 decedents

Nurses and aides

play a crucial role

in whether

residents receive

hospice care at the

end of their lives

and for how long

that care is

received. Results

show that skills in

recognizing

terminal decline,

beliefs about

hospice services,

and initiative in

raising the option

of hospice are

decisive factors.

Depended on the

memory/recall of

the professional

staff about

deceased patients

Sample size small

178

Appendix E

You are invited to participate in this important research!

We are recruiting Palliative Care Nurses (RN’s) who have a minimum of 1

year experience working in any sector of the AHS Palliative Care Program.

You will have the opportunity to be observed and to share your experiences

in 1:1 interviews. We are interested in your work with individuals at end of

life with chronic illness who require your estimation of life remaining.

Are you a Palliative Care Nurse working in the Alberta Health Services

Palliative Care Program?

Would you like to participate in research to better understand the

experiences of Palliative Care Nurses in their work of estimating life

remaining for patients with chronic illness?

Research Participants Needed

Palliative Care Nurses’ Experiences in

Prognostication

For Information Contact Angela Ferguson

(PhD Student) angieleeferg@gmail.com

afergu@ucalgary.ca Ethics ID: REB16-0401

This study has been approved by the University of Calgary Conjoint Health Research Ethics Board PI: Dr. Shelley Raffin Bouchal raffin@ucalgary.ca 403-220-6258 Ethics ID: REB16-0401

179

Appendix F

Consent form for Interview

TITLE: Prognosticating in non-malignant illness: Experiences and processes of Palliative Care

Nurses

INVESTIGATORS:

Dr. Shelley Raffin Bouchal

University of Calgary, Faculty of Nursing

Associate Professor, Associate Dean (Graduate Programs)

(403) 220-6258

Angela Ferguson, RN, MA (Doctoral student)

University of Calgary, Faculty of Nursing

PhD Program

(403)

This consent form is only part of the process of informed consent. It should give you the basic

idea of what the research is about and what your participation will involve. If you would like

more detail about something mentioned here, or information not included here, please ask. Take

the time to read this carefully and to understand any accompanying information. You will

receive a copy of this form.

BACKGROUND

Palliative Care Nurses (PCN) serve as integral members of Hospice Palliative Care teams across

Canada. A central component of the PCN professional practice that is unique in Nursing is their

work of prognostication across care settings. Estimating the length of life remaining in patients

in Palliative Care is a pivotal decision making activity. It guides care conversations, care

decisions, and care pathways, including transition choices such as application for hospice care.

Prognosticating for non-malignant illness is considered in the literature as more complex than for

malignant illness. Little is known about the experiences and processes of prognostication by

PCN for individuals with non-malignant illness.

WHAT IS THE PURPOSE OF THE STUDY?

The purpose of this study is to discover and theorize how Palliative Care Nurses experience the

work of prognostication in the context of non-malignant illness. What processes guide the

prognostic work of PCN in determining location of palliation? What supports are needed for the

180

individual at end of life? This research will serve to add to our understanding of this unique work

undertaken by PCN that greatly impacts palliative patients across sectors.

WHAT WOULD I HAVE TO DO?

You would be an eligible participant if you currently practice as a Palliative Care Nurse in any

department of the AHS Palliative Care Program with at least 1 year full-time equivalency of

experience. If you take part in the study Angela Ferguson will interview you about your

experiences.

The interview is expected to last from 1 to 1.5 hours in duration and will be held at the location

of your choice, at a mutually agreeable time. You may be asked to participate in an additional

interview. The interviews will be tape recorded and later transcribed. (typed out word for word).

WHAT ARE THE RISKS?

There is little risk to you in taking part in this study. It is possible that you may remember

unpleasant experiences about a patient’s illness/death during the interview. Should you

experience distress during the interview and believe you could benefit from support, Angela can

refer you to a variety of counselling services. One example of such support is the AHS Employee

Assistance Program.

All responses by the participants of this study are confidential. A fake name (pseudonym) will be

assigned to each participant and used in any written information, publication or presentation of

the study results. There is a small risk that something you said may be recognized by other

nurses in the quoted material used in publications or teaching. Angela will make every attempt to

use quotations in a manner which does not reveal your identity.

WILL I BENEFIT IF I TAKE PART?

If you agree to participate in this study there may or may not be a direct benefit to you. The

information we get from this study may help us to support PCN provide better prognostication

for individuals with non-malignant illness in the future.

DO I HAVE TO PARTICIPATE?

No, you have no obligation to participate in this study. All participation in this study is

voluntary. You can stop your participation in the interview(s) at any time. You can withdraw

from the study at any time up to when the data analysis occurs. Once data analysis starts there is

no means to separate your information from other participants in its entirety.

You can withdraw from the study by:

• Contacting the Primary Investigator (Dr. Raffin Bouchal) or Doctoral Student (Angela

Ferguson) with your decision to withdraw;

• By not attending, cancelling your interview appointments;

181

• By stopping the interview and advising the researcher that you cannot stay, wish to leave

and or withdraw from this study. In the event that you withdraw from the study, any

information from your interview will be destroyed and not used in the study.

•

WILL I BE PAID FOR PARTICIPATING, OR DO I HAVE TO PAY FOR ANYTHING?

You will not be paid to participate in this study nor do you have to pay for anything.

WILL MY RECORDS BE KEPT PRIVATE?

Yes, your records will be kept private on a password protected computer. All identifying

information such as name, location of work will be stripped from the data. The interview is

confidential and your name will be replaced by a pseudonym (fake name). The exception would

be if there was an urgent risk to self or others that would need to be reported. In this case, the

appropriate legal authority would be contacted. Written and audio recordings of the interviews

will be kept in a locked cabinet at the University of Calgary. Written transcripts will be kept for

5 years and then destroyed. Audio tapes will be erased when the study is complete. The research

team will see the completed transcripts. It is possible that the University of Calgary Conjoint

Health Research Ethics Board will look at the information for audit purposes.

IF I SUFFER A RESEARCH-RELATED INJURY, WILL I BE COMPENSATED?

In the event that you suffer injury as a result of participating in this research, no compensation

will be provided to you by the University of Calgary, Alberta Health Services or the Researchers.

You still have all your legal rights. Nothing said in this consent form alters your right to seek

damages.

SIGNATURES

Your signature on this form indicates that you have understood to your satisfaction the

information regarding your participation in the research project and agree to participate as a

participant. In no way does this waive your legal rights nor release the investigators or involved

institutions from their legal and professional responsibilities. You are free to withdraw from the

study at any time without jeopardizing your health care. If you have further questions concerning

matters related to this research, please contact:

Dr. Shelley Raffin (403) 220-6258

Or

Angela Ferguson (403)

If you have any questions concerning your rights as a possible participant in this research, please

contact the Chair, Conjoint Health Research Ethics Board, University of Calgary at 403-220-

7990.

182

Participant’s Name Signature and Date

Investigator/Delegate’s Name Signature and Date

Witness’ Name Signature and Date

The University of Calgary Conjoint Health Research Ethics Board has approved this research

study.

A signed copy of this consent form has been given to you to keep for your records and reference.

183

Appendix G

Consent form for Observation

TITLE: Prognosticating in non-malignant illness: Experiences and

processes of Palliative Care Nurses.

INVESTIGATORS:

Dr. Shelley Raffin Bouchal

University of Calgary, Faculty of Nursing

Associate Professor, Associate Dean (Graduate Programs)

(403) 220-6258

Angela Ferguson, RN, MA (Doctoral student)

University of Calgary, Faculty of Nursing

PhD Program

(403)

This consent form is only part of the process of informed consent. It should give you the basic

idea of what the research is about and what your participation will involve. If you would like

more detail about something mentioned here, or information not included here, please ask. Take

the time to read this carefully and to understand any accompanying information. You will

receive a copy of this form.

BACKGROUND

Palliative Care Nurses (PCN) serve as integral members of Hospice Palliative Care teams across

Canada. A central component of the PCN professional practice that is unique in Nursing is their

work of prognostication across care settings.

Estimating the length of life remaining in patients in Palliative Care is a pivotal decision making

activity. It guides care conversations, care decisions, and care pathways, including transition

choices such as application for hospice care. Prognosticating for non-malignant illness is

considered in the literature as more complex than for malignant illness. Little is known about the

experiences and processes of prognostication by PCN for individuals with non-malignant illness.

WHAT IS THE PURPOSE OF THE STUDY?

The purpose of this study is to discover and theorize how PCN experience the work of

prognostication in the context of non-malignant illness. What processes guide the prognostic

work of PCN in determining location of palliation? What supports are needed for the individual

at end of life? This research will serve to add to our professional understanding of this unique

work undertaken by PCN that greatly impacts palliative patients across sectors.

184

WHAT WOULD I HAVE TO DO?

You would be an eligible participant if you currently practice as a Palliative Care Nurse in any

department of the AHS Palliative Care Program with at least 1 year full-time equivalency of

experience. If you take part in the study Angela Ferguson will observe you with your chronically

ill, end-of-life patient, in the context of estimating life remaining for care transitions.

The observation is expected to last from 1 to 1.5 hours in duration and will be held at the patient

location, at a mutually agreeable time. Verbal consent for the observation will be obtained from

the patient by the PCN prior to initiation. The PCN will confirm with the patient that the Nurse is

the focus of the observation and not the patient. Angela will be taking notes and observing in the

least intrusive manner as possible.

WHAT ARE THE RISKS?

There is little risk to you in taking part in this study. It is possible that you may remember

unpleasant experiences about a patient’s illness/death during the observation. Should you

experience distress during the observation and believe you could benefit from support, Angela

can refer you to a variety of counselling services. One example of such support is the AHS

Employee Assistance Program.

All responses by the participants of this study are confidential. A fake name (pseudonym) will be

assigned to each participant and used in any written information, publication or presentation of

the study results. There is a small risk that something you said may be recognized by other

nurses in the quoted material used in publications or teaching. Angela will make every attempt to

use quotations in a manner which does not reveal your identity.

WILL I BENEFIT IF I TAKE PART?

If you agree to participate in this study there may or may not be a direct benefit to you. The

information we get from this study may help us to support PCN provide better prognostication

for individuals with non-malignant illness in the future.

DO I HAVE TO PARTICIPATE?

No, you have no obligation to participate in this study. All participation in this study is

voluntary. You can stop your participation in the observation at any time. You can withdraw

from the study at any time up to when the data analysis occurs. Once data analysis starts there is

no means to separate your information from other participants in its entirety.

You can withdraw from the study by:

• Contacting the Primary Investigator (Dr. Raffin Bouchal) or Doctoral Student (Angela

Ferguson) with your decision to withdraw;

• By not attending, cancelling your observation appointment;

• By stopping the observation and advising the researcher that you cannot stay, wish to

leave and or withdraw from this study. In the event that you withdraw from the study, any

information from your observation will be destroyed and not used in the study.

185

WILL I BE PAID FOR PARTICIPATING, OR DO I HAVE TO PAY FOR ANYTHING?

You will not be paid to participate in this study nor do you have to pay for anything.

WILL MY RECORDS BE KEPT PRIVATE?

Yes, your records will be kept private on a password protected computer. All identifying

information such as name, location of work will be stripped from the data. The observation is

confidential and your name will be replaced by a pseudonym (fake name). The exception would

be if there was an urgent risk to self or others is reported. In this case, the appropriate legal

authority would be contacted. Written and audio recordings of the observation will be kept in a

lock cabinet at the University of Calgary. Written transcripts will be kept for 5 years and then

destroyed. Audio tapes will be erased when the study is complete. The research team will see the

completed transcripts. It is possible that the University of Calgary Conjoint Health Research

Ethics Board will look at the information for audit purposes.

IF I SUFFER A RESEARCH-RELATED INJURY, WILL I BE COMPENSATED?

In the event that you suffer injury as a result of participating in this research, no compensation

will be provided to you by the University of Calgary, Alberta Health Services or the Researchers.

You still have all your legal rights. Nothing said in this consent form alters your right to seek

damages.

SIGNATURES

Your signature on this form indicates that you have understood to your satisfaction the

information regarding your participation in the research project and agree to participate as a

participant. In no way does this waive your legal rights nor release the investigators or involved

institutions from their legal and professional responsibilities. You are free to withdraw from the

study at any time without jeopardizing your health care. If you have further questions concerning

matters related to this research, please contact:

Dr. Shelley Raffin (403) 220-6258

Or

Angela Ferguson (403)

If you have any questions concerning your rights as a possible participant in this research, please

contact the Chair, Conjoint Health Research Ethics Board, University of Calgary at 403-220-

7990.

186

Participant’s Name Signature and Date

Investigator/Delegate’s Name Signature and Date

Witness’ Name Signature and Date

The University of Calgary Conjoint Health Research Ethics Board has approved this research

study.

A signed copy of this consent form has been given to you to keep for your records and reference.

187

Appendix H

Unstructured Interview & Interview questions:

Pre-interview: observation notes for post-interview memo writing

Introduction

• Explanation of the aim of the interview

• Who I am, what I am doing

• Review anonymity and confidentiality and their ability to stop the interview at any time

• Explain what will happen to any findings

• Length of the interview

Warm up questions

• How long have you been in Palliative Care?

• How long have you been in your current role?

• What are a few of your role responsibilities?

As you are aware I am really curious about the practice of prognostication (and how the process

unfolds) that is regularly a part of the palliative care professionals experience on a regular basis

in the context of care placement. As we work through these questions please share stories and

offer any examples, without of course using patient’s names.

Tell me about a time when you were called upon to prognosticate for a patient with a non-

malignant (chronic disease).

What things do you consider when prognosticating for a patient with non-malignant disease?

From your perspective, tell me about the Palliative Performance Scale (tool) and how it assists

you with prognosticating for a patient with non-malignant disease.

Given your experience, tell me about known disease trajectories and how they assist you with

prognosticating for a patient with non-malignant disease.

In your experience, do you have any suggestions as to how we could be better at prognosticating

for non-malignant populations?

Cool down question: Is there anything you had hoped I would ask?

Closure question: Is there anything additional you would like to share?

**Off the record time/ Post-Interview: Field notes & Thoughts/memos

188

Appendix I

Participant Demographics

46%

18%

27%

9%

Years of Palliative Care Experience

5-14 years 15-20 years

20-30 years >30 years

189

Appendix J

The overarching categories and subcategories derived from the study data

Finding One

Category: Cognitive (Thinking) Factors

The ‘what’ or ‘mind’ of prognostication as an intellectual process of knowing, understanding and

thinking.

• Death awareness of others

• Questioning self

• Fallibility

• Perception of chronic diseases

• Describing chronic diseases metaphorically

Finding Two

Category: Affective (Emotion) Factors

The ‘why’ or ‘heart’ of prognostication as the connection of knowledge and motivation with

action.

• Wonder

• Intuition

• Anticipating dying and preparing the patient and family

• Supporting symptoms and quality of life

Finding Three

Category: Conative (Volition)

The ‘how’ or ‘process’ of prognostication as the identified undertaken actions followed by

participants.

• Knowing

• Assessing

• Trending

• Predicting

• Pronouncing