Autonomy as lived: An empirical- ethical analysis of patient autonomy in the clinical context of ...

341 Pages·2014·3.09 MB·English

by  Computer Services

Autonomy as lived: An empirical-
ethical analysis of patient autonomy in
the clinical context of individuals
engaged with self-testing technology

Anna-Marie Greaney
MA, BNS, RNT, RGN

School of Nursing and Human Sciences
Dublin City University

A thesis presented to Dublin City University for the degree
of Doctor of Philosophy

September 2014

Supervisors:
Dr. Dónal P. O’Mathúna, School of Nursing and Human Sciences
Professor P. Anne Scott, School of Nursing and Human Sciences
i
DECLARATION OF AUTHORSHIP

I hereby certify that this material, which I now submit for assessment on the programme
of study leading to the award of Doctor of Philosophy is entirely my own work, and
that I have exercised reasonable care to ensure that the work is original, and does not
to the best of my knowledge breach any law of copyright, and has not been taken from
the work of others save and to the extent that such work has been cited and
acknowledged within the text of my work.

Signed: ________________________ID No: 59102977

Date: ____________________________

ii
ACKNOWLEDGEMENTS

To my supervisors Dr. Dónal O’Mathúna and Professor Anne Scott: thank you for your
academic guidance, invaluable philosophical insight and kind support throughout the entire
process. Thank you to the patients and healthcare professionals who agreed to participate in the
study, despite the busyness of their everyday lives and challenging clinical work environments.
Thank you to the Director and staff of the Biomedical Diagnostics Institute for their assistance,
1
particularly the education and outreach team and the study participants. A sincere thank you
to the gatekeepers who facilitated access to all research sites. For anonymity reasons I have not
named you here. I would also like to express my gratitu de to the many phenomenologists ,
ethic ists and other academics, who willingly gave of their time and ex pertise to assist me in my
work . I have noted your contributions within the thesis. My time as a visiting student to the
Hastings Bioethics Centre in New York deserves special mention, both for the time it afforded
for concentrated study and the inspiration gleaned from the vibrant academic community.

To my colleagues , and current and p revious managers , within the Department of Nursing and
Health Care Sciences at The Institute of Technology Tralee: t hank you for your support,
patience and friendship throughout the process . A special thank you to my c ritical readers ,
friends and accompanying thinkers : Ashley, Brigid, Deirdre, Denise, Emer, Mary, Sheila and
Tom. I will always remember the kindness and practical assistance of those who ‘rallied to the
cause’ in the final few days. Thanks to Siobhan Murphy for assistance with the graphic
representation of findings. Thank you to Kathryn and Paul for opening their home to a
sometimes-weary PhD student. It was much appreciated. To family members and friends who
supported me in so many ways over the last number of years, your friendship, encouragement,
interest and welcome distractions made all the difference. In addition to those already noted, a
particular mention to my siblings, Katherine, Margaret, Bertie and their families is warranted.
Thank you Katherine for the calming Crinnie walks and Margaret for all the early morning
phone calls! Special thanks also to Ann-Marie, Brid-Ann, Elaine, Miriam, Nora, Sinead and
Trina – a constant support network. A final note of gratitude to my wonderful parents, Jim and
Sheila, who always remember my achievements, but forget they taught me the most important
things in life: love, friendship, laughter and the value of education and hard work. I look
forward to more of a balance in all these things ….

This research was supported by Science Foundation Ireland (SFI) (SFI 05/CE3/B754 and SFI
10/CE/B1821).

1
The Institute is named here with permission.
iii
TABLE OF CONTENTS

DECLARATION OF AUTHORSHIP ........................................................... ii
ACKNOWLEDGEMENTS ....................................................................... iii
TABLE OF CONTENTS ........................................................................... iv
LIST OF TABLES ................................................................................... vi
LIST OF FIGURES .................................................................................. vi
ABSTRACT ...........................................................................................vii
GLOSSARY OF CORE CLINICAL/TECHNOLOGICAL TERMS ..................... viii
LIST OF ABBREVIATIONS ..................................................................... ix

SECTION 1: PRE-UNDERSTANDINGS ................................................... 11
CHAPTER 1: ORIENTATION TO THE STUDY ................................................................... 11
1.1 Introduction to the study: Why autonomy and self-testing? ................................... 11
1.2 Study aim .................................................................................................................. 13
1.3 The research context: The hermeneutic circle of understanding ............................. 13
1.4 Thesis structure ......................................................................................................... 19
CHAPTER 2: LITERATURE REVIEW: PATIENT AUTONOMY AND SELF-TESTING DEVICES... 22
2.1 Introduction: The literature review in interpretive phenomenology ....................... 22
2.2 Patient autonomy in contemporary healthcare practice: The ‘autonomy
conundrum’ ..................................................................................................................... 23
2.3 Self-testing technology as a microcosm of the autonomy conundrum in
contemporary healthcare practice ................................................................................. 35
2.4 Self-testing technology and patient autonomy in diabetes management ............... 39
2.5 Conclusions from the literature and justification for proposed research ................ 47

SECTION 2: RESEARCH STRATEGY ....................................................... 51
CHAPTER 3: PHILOSOPHICAL AND THEORETICAL UNDERPINNINGS ............................... 51
3.1 Introduction .............................................................................................................. 51
3.2 The ‘empirical turn’ in bioethics: Implications for this study ................................... 51
3.3 Technology, ethics and Health Technology Assessment .......................................... 56
3.4 Philosophy of Technology ......................................................................................... 57
3.5 Heideggerian phenomenology .................................................................................. 62
3.6 Why Heideggerian phenomenology in this study? ................................................... 65
3.7 Addressing critiques of Heideggerian phenomenology in an empirical context ...... 67
3.8 Conclusion ................................................................................................................. 69
iv
CHAPTER 4: METHODOLOGY ....................................................................................... 70
4.1 Introduction .............................................................................................................. 70
4.2 Research aim and objectives..................................................................................... 70
4.3 The research design: A cyclical process of ethical and empirical enquiry ................ 71
4.4 Research methodology ............................................................................................. 73
4.5 Research setting, sample and recruitment procedures ............................................ 76
4.6 Data collection procedures ....................................................................................... 79
4.7 Data analysis ............................................................................................................. 82
4.8 Rigour ........................................................................................................................ 85
4.9 Ethical considerations ............................................................................................... 86

SECTION 3: NEW UNDERSTANDINGS .................................................. 89
CHAPTER 5: AUTONOMY AS LIVED .............................................................................. 89
5.1 Introduction .............................................................................................................. 89
5.2 Technology as revealing: The interdependent phenomenon of autonomy in self-
testing ............................................................................................................................. 90
5.3 Relationship with device ........................................................................................... 97
5.4 Relationship with illness.......................................................................................... 125
5.5 Relationship with healthcare provider ................................................................... 143
5.6 Conclusion: The interdependent phenomenon of autonomy in self-testing ........... 169
CHAPTER 6: DISCUSSION/ETHICAL ANALYSIS ............................................................. 171
6.1 Introduction ............................................................................................................ 171
6.2 Summarising Autonomy as lived ............................................................................. 174
6.3 Conceptualising Autonomy as lived ........................................................................ 176
6.4 Revisiting the autonomy conundrum ..................................................................... 206
6.5 An operational account of autonomy for practice: ‘Negotiated autonomy’ as a
possible solution ........................................................................................................... 221
6.7 Conclusion ............................................................................................................... 231
CHAPTER 7: SUMMARY, CONCLUSIONS AND RECOMMENDATIONS ........................... 232
7.1 Introduction ............................................................................................................ 232
7.2 Study summary and conclusions ............................................................................. 233
7.3 Acknowledging methodological limitations ............................................................ 234
7.4 Recommendations based on new understandings ................................................. 236
7.5 Summary ................................................................................................................. 242
REFERENCES ..................................................................................... 244
v
APPENDICIES.................................................................................... 267
Appendix A: Analysis journal extracts ....................................................................... 267
Appendix B: Published autonomy paper .................................................................... 270
Appendix C: Process and scope of literature review ................................................... 299
Appendix D: Personal Autonomy – Conceptual Axes .................................................. 301
Appendix E: “Is-ought” paper .................................................................................... 302
Appendix F: Patient interview guide .......................................................................... 321
Appendix G: Healthcare professional interview guide ................................................ 322
Appendix H: Scientific community participants focus group guide and post
evaluation ................................................................................................................ 323
Appendix I: Analysis worked example - From data to thematic understanding .......... 326
Appendix J: Interpretive guide to support analysis .................................................... 328
Appendix K: Knowledge building - Knowledge dissemination ..................................... 329
Appendix L: Ethical approval letter from Dublin City University ................................. 330
Appendix M: Invitation letter, plain language statement and informed consent for
patients .................................................................................................................... 331
Appendix N: Invitation letter, plain language statement and informed consent for
healthcare professionals ........................................................................................... 335
Appendix O: Plain language statement and informed consent for scientific community
(BDI) participants ..................................................................................................... 339

LIST OF TABLES
Table 1: Features of rigour in interpretive research (Adapted from Smith 1998).......... 86
Table 2: Patient participant profile ..................................................................................... 94

LIST OF FIGURES
Figure 1: The hermeneutic circle in which the patient experience of autonomy occurs 14
Figure 2: Cyclical model of empirical ethics research (Adapted from McMillan and
Hope 2008) ............................................................................................................................. 71
Figure 3: Autonomy as lived: The interdependent phenomenon of autonomy in self-
testing ..................................................................................................................................... 92
Figure 4: Negotiated Autonomy......................................................................................... 226

vi
ABSTRACT

Autonomy as lived: An empirical-ethical analysis of patient autonomy in the
clinical context of individuals engaged with self-testing technology
Anna-Marie Greaney

Aim/Background: This study examines the meaning of patient autonomy in healthcare
in the clinical context of individuals engaged with self-testing technology. Patient
autonomy has gained increased prominence in healthcare ethics, policy and practice in
recent decades. This poses challenges when autonomy competes with other moral
principles. The proliferation of self-testing technology provides a contextualised
example of this ideological shift. The philosophical assumption underpinning these
technologies is that they facilitate greater autonomy through self-management. This
study explores that assumption and the wider reverence to autonomy in healthcare.
Methodology: Heideggerian phenomenology provides an overarching philosophy for
the research. The study adopts an empirical ethics research design, which integrates
philosophical analysis and empirical enquiry in a cyclical fashion. Ethical analysis
precedes and follows empirical investigation. Interpretive phenomenology is utilised
to elicit the lived experience of autonomy among 12 individuals with diabetes engaged
in the self-testing process. The perspectives of prominent stakeholders such as
healthcare professionals and scientific community members are also sought. Data is
analysed collectively in accordance with a hermeneutic approach.
Findings/Recommendations: The study illuminates the ethical principle of autonomy
in a practical context. Findings reveal an understanding of Autonomy as lived: The
interdependent phenomenon of autonomy in self-testing whereby the patient experience
of autonomy is underpinned by three inter-reliant relationships - Relationship with
device, Relationship with illness and Relationship with healthcare provider. Findings
suggest that autonomy is a contextualised, relational process, which exists as a
continuum and occurs within constraints. The concept of ‘negotiated autonomy’ is
suggested as a means to operationalise Autonomy as lived within the patient/healthcare
professional relationship. Findings have implications for bioethicists, policy-makers,
healthcare professionals and patients when conceptualising and operationalising
autonomy. The study also highlights the benefit of dialogue among the scientific
community regarding the social and ethical dimensions of emerging technologies.

vii
GLOSSARY OF CORE CLINICAL/TECHNOLOGICAL TERMS

Diabetes Mellitus: A chronic disease of the endocrine system characterised by deficient
insulin production (type 1 diabetes) or ineffective use of available
insulin (type 2 diabetes). This results in an inability to control blood
glucose levels. Prolonged raised blood glucose levels can cause long-
term complications such as damage to blood vessels, the heart,
kidneys and eyes.
Glycaemic control: The extent to which target blood glucose levels are achieved
HbA1c: Glycosylated Haemoglobin.
Blood glucose levels can also be monitored by means of HbA1c or
glycosylated haemoglobin. This measurement is taken at a clinic visit
and gives a record of blood glucose levels over a period of time.
Current NICE quality standards for diabetes in adults (2011) suggest
that a target HbA1c value of between 48 mmol/mol and 58
mmol/mol. This corresponds to between 6.5% and 7.5% in previous
value terms. Participants in this study frequently refer to the
percentage value.

Hyperglycaemia: Raised blood glucose levels
Hypoglycaemia: Reduced blood glucose levels
Insulin: A hormone produced naturally in the body to regulate blood
glucose levels. Can be given in synthetic form as a pharmacological
agent to treat diabetes.
Oral hypoglycaemics: Oral medication given to individuals with type 2 diabetes (still
producing insulin) to reduce blood glucose levels
Point of care testing: A method of carrying out a complete diagnostic test near to the
patient as opposed to within the traditional environment of a
2
clinical laboratory.
Self-testing device: Any device intended by the manufacturer to be able to be used by
laypersons in a home environment (Irish Medicines Board 2004,
p.6).

2
The term is used differently within the literature. Some texts refer to point of care devices in a
clinically supervised context only, while others include self-tests for home use as point of care devices.
For clarity purposes, this study distinguishes between point of care devices intended for use under
clinical supervision, and those that are utilised as self-tests for personal use outside of the clinical
environment.

viii
LIST OF ABBREVIATIONS

ABA An Bord Altranais (The Irish Nursing Board)
ADA American Diabetes Association
BDI Biomedical Diagnostics Institute
DAFNE Dose adjusting for normal eating (A structured education programme for
individuals with type 1 diabetes)
DoH Department of Health (Ireland) (Unless otherwise stated)
DoHC Department of Health and Children Ireland (Former title of DoH)
EAGD Expert Advisory Group for Diabetes (Ireland)
HIQA Health Information and Quality Authority
HSE Health Service Executive
HTA Health Technology Assessment
IDF International Diabetes Federation
IMB Irish Medicines Board
IMDA Irish Medical Devices Association
NICE National Institute for Health and Care Excellence (UK)
NMBI Nursing and Midwifery Board of Ireland (formerly ABA)
RCT Randomised Controlled Trial
SMBG Self-monitoring of Blood Glucose
WHO World Health Organisation

ix
Thinking takes us beyond known ways,
into the clearing,
of un-formed understanding.

It is of ourselves, in ourselves and beyond ourselves.
Uniquely our own, common to us all.
private, precious
Only to be deemed worthy
When the knowing is “said”

The world of method/methodology
can confine thinking to pre-made boxes
with no escape

In the open place
trees show themselves
light shines
and in both seeing and not-seeing
thinking comes
up welling within.

(Smythe 2005)

10