HH21: Bachelor of Arts (Honours)
HHB405: Honours Dissertation 2
Re-Storying the Dying Self:
A narrative investigation of self-identity complexities at the end of life.
By
Monika Wilson
n02391066
October 2002
Queensland University of Technology
School of Humanities and Human Services
Applied Ethics Research Concentration
“Who is there in all the world who listens to us?
Here I am – this is me in my nakedness, with my
wounds, my secret grief, my despair, my betrayal, my pain which I can’t express, my terror, my abandonment. Oh, listen to me for a day, an hour, a moment, lest I expire in my terrible wilderness, my lonely silence.
Oh God, is there no one to listen?”
Seneca.
This dissertation is
dedicated to my father,
Clive Westgarth Wilson,
who died on the evening of
the 10th January, 2002.
I am pleased that I had the
opportunity to listen to
some of your stories before
you died ...
Contents Page
Contents Page 4
Statement of Ownership and 5
The Use of First-Person
Acknowledgements 6
Introduction 7
My Story …
Palliative Care
Self-identity and Narratives (Stories)
Applied Ethics
Rationale
Methodology Summary
Values and Limits
Chapter Summary
Chapter One Dying - A Multivocal Perspective: 20 A Review of the Literature
Chapter Two Narratives Whilst Living and Dying: 34
A Conceptual Framework
Chapter Three The Role of Stories: 49
A Methodological Review
Chapter Four The Living-Dying Narratives: 55 A Presentation of the Self-Stories
A Multivocal Commentary
Chapter Five Palliative Care Practice Possibilities: 81
Life Review
Storying and Re-Storying
An Ethic of Listening
Research Possibilities
Conclusion 89
Bibliography 91
Appendices 101
Statement Of Authorship
The work contained in this dissertation has not been previously submitted for a degree or diploma at any other higher education system. To the best of my knowledge and belief, the dissertation contains no material previously published or written by another person except where due reference is made.
Signed: ......
Date: ......
The author asserts her moral rights.
Copyright 2002.
The Use Of First-Person
I would like to inform the reader that this dissertation includes references to myself. Firstly, this is because, it is partly my story. This means that the choice of this topic; the reasons for doing this investigation; the way that the dissertation has been compiled; the energy required to do this work; and the interconnectedness with the living-dying people with whom I consulted, have been influenced by my own values, beliefs and interpretations. In so many ways my voice is present throughout this dissertation.
Secondly, the ideology that underpins qualitative research methodology, which this investigation utilises, understands and reinforces the point that research is not a neutral, objective and value-free endeavour – but that there will be dialogical relationships developed between the researcher and the one being researched. This further reinforces the idea that I cannot claim to be absent from this text, but am very much involved in it.
Finally, one of the viewpoints of this dissertation is the emphasis on the voicing of stories and listening to people’s stories. Consequently, this means that my voice is of equal worth to the scholars that I refer to and the living-dying people who have provided their precious insights.
I am present throughout this dissertation and so I will refer to myself as ‘I’.
Acknowledgements
To start, and most importantly, I would like to sincerely thank the three courageous and giving women who told me their intimate self-stories. I acknowledge their unique differences and their common struggles at the end of their lives. Each of them mentioned their desire to help others at this time as their reason for participating in this investigation. Without their stories this dissertation would be empty. I sincerely hope that your dying is peaceful and pain-free, surrounded by your loved ones.
I would like to thank the staff of the Karuna Hospice Service for allowing me to access their clients and for fostering research in this area. This organisation is enthusiastic about understanding psychosocial and spiritual issues for people who are dying. They continue to embrace, and strive to carry out, the ideals of holistic palliative care. A special mention goes to Margaret Cook, the Clinical Nurse Coordinator, for her support in the recruitment process.
I would like to mention Allan Kellehear, who aided me in the initial stages of this dissertation, with valuable advice regarding ethics committees and the ethics clearance process in general. But, more than this, he was able to communicate his support and encouragement to me at a time when it was very much needed. Thank you Allan – I understand and appreciate that I am in ‘good and courageous company’.
I would like to acknowledge all of the wonderful authors and researchers that I have included in this dissertation, most especially Arthur W. Frank. Thank you for your inspiration, courage and revolutionary ideas.
To my fellow researchers in the post-graduate laboratory - thank you for your ears, shoulders and brilliant minds.
To the courageous, committed staff members who make up the Applied Ethics department in the School of Humanities and Human Services. Thank you for being ‘you’ and striving to live ethically every moment of every day. Special mentions go to Peter Isaacs for his gracious wisdom and David Massey, my supervisor, who supports, encourages and confirms me in a way that I have never experienced before. You are both truly amazing people and I feel honoured to be in your company.
My thanks to my friends and family who stand by my side and let me know that what I am doing is important and ‘right’.
To my diligent proof readers – thank you Joanna, Michael and David for your painstaking thoroughness in proofreading this dissertation. I acknowledge the enormity and challenge of this big job! Through your proofreading, I acknowledge the valuable inclusion of your voices as well in this narrative.
Finally, a person who continues to be everything to me and who kept me going in difficult times - my beautiful, intelligent husband, Michael. Through endless hours of discussions, brain storming, proof reading, grammar corrections, cups of hot drinks, chocolate runs, emergency massages, ideas, gracious oppositions and tireless support – what can I say, my love – thank you for being you and helping me the way you do.
My Story …
It is appropriate to commence this narrative investigation of self-identity complexities at the end of life with a personal story. This self-story provides a personal rationale for pursuing this topic area and carrying out this palliative care research.
I was walking down the corridor of the hospice that I work at as a volunteer. I am always on the look out for someone who might want a chat or need some sort of help, but it was reasonably quiet today. I got to the end of the corridor and saw a man lying in bed with a grim look on his face. I tend to stop and take a few seconds to reflect on the decision as to whether this person would want to talk or whether I should let him be. The decision made, I approached his bed. I asked an opening, mundane question: “How are you going today?” “Not very good today”, he replied. I enquired as to what was happening for him and he said that he didn’t like being in the hospice. “The staff don’t really help you”, he asserted quite strongly. Rather than simply agreeing or disagreeing with him, I asked him – “If they were helping you, what would they be doing?” He replied, quite simply – “Listening – They would listen to me”. “Oh”, I said.
“Well I’m happy to listen to you. What would you like to talk about?” He then went on to talk about his life, what was important to him, the things he had done throughout his life and, essentially, who he was. He talked quite a bit about his love of cricket. Towards the end of our conversation, or of his talking and my active listening, he said, “I think I’ve had a good innings. I’ve been a good person and had a reasonable life”. I observed that his face and body language had changed and his eyes started to drop a little, so I left not long after that.
I walked away with a thousand questions. Why had he told me all of that? Didn’t he have anyone else to tell this to? Had it helped, and in what way, to tell me this story? What was it about stories that were important in our culture? Why was it that there had not been another person who had recognised the distress this man was in and how important it was for him to talk through his life and self-story and have someone listen to it? I felt honoured that he had told me his story of his life and self. The next week when I came back, he had died.
The significance of this personal story is that it posed important questions that I believed needed to be explored, and provided a starting point from which to launch this investigative dissertation. Therefore, the broad purpose of this dissertation is to seek to understand how a ‘sense of self’ or self-identity is affected throughout the living-dying process. Does the living-dying individual experience a loss of perceived wholeness as themselves? What happens to the individual’s sense of who they are? Is it inevitable that the living-dying person perceives a ‘self death’, before biological death occurs? As a consequence of these questions the primary objective is to seek to investigate and illuminate the complexities and challenges to a person’s self-identity at the end of life. This topic comes under the domain of palliative care and applied ethics research.
Guiding Question: How is a sense of self (self-identity) affected by the dying experience?
Primary Objective: To investigate and illuminate the complexities and challenges to a person’s self-identity at the end of life.
Palliative Care
…during the course of their illness and body deterioration, patients may lose various aspects of their selfhood and identity which qualify them for the status of a ‘whole person’ …
Lawton, 2000, p. 2
To gain a clearer picture of the context in which this research project operates, some clarification needs to be provided in regard to the meaning of palliative care. The approach adopted by the palliative care movement declares that care must include the whole person. This is usually referred to as holistic care. The Australian Standards for Palliative Care Provision (1999) define it as:
Specialised health care of dying people, who are no longer responding to curative treatment ... aiming to maximise quality of life and assist family and carers during and after death … it is holistic, patient and family centred care provided for dying people and their families … It acknowledges dying as a physical, psychological, social, spiritual and cultural process that is experienced uniquely by each person and family (p. 5).
What this definition indicates is that when providing care for the living-dying person and his or her family, practice methods and options need to recognise and include the understanding and value that there is more to a person than his or her body and that the other domains of his or her ‘being’ interweave and interconnect with the physical domain to make up a whole person.
Aside from this principle of holistic care, further underpinnings of the palliative care movement are the attainment of a ‘death with dignity’ and care that strives for ‘living until dying’. The emphasis is, therefore, upon achieving the best possible quality of life … until a person dies. But the question then needs to be asked – what do these principles mean to the individual person who is dying? Dignity is going to be actualised differently for each person; so too is ‘living’. ‘Best’ quality of life can also mean so many different things for different people. Yet I cannot help thinking that to feel dignity or fully alive until death one must also feel like a ‘whole’ person in some way and either have, or alter, or construct a sense of who one is during the dying process and before death itself.
A further ethos of palliative care is one that aims to minimise and relieve distress or suffering (Randall & Downie, 1999). With this recognition, research and practice in the palliative care field is more recently focussing on investigating and addressing issues of psychosocial and spiritual concerns for living-dying people. An implicit assumption of this dissertation is that by addressing the complexities of self-identity for a person who is dying, (which will necessarily include the psychosocial and spiritual domains of the self) may then lend itself towards a lessening of distress and suffering. Suffering, by Cassell’s (1991) definition, “is brought about by the actual or perceived impending threat to the integrity or continued existence of a whole person” (p. 24). This means that a person must have a level of concern for the preservation of his or her preferred self-identity, “otherwise loss of intactness would not be a threat” (Cassell, 1991). Storey & Knight (1997) eloquently state, “at the heart of suffering is a feeling that what ought to be whole is being split apart” (p. 16). In other words, one’s sense of him- or her self will appear to be fragmented or no longer ‘whole’. Therefore, it could be argued that suffering during the living-dying process will continue, until the self-identity challenges and complexities are addressed by living-dying people and their carers.