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
My Story …
Self-identity and Narratives (Stories)
Values and Limits
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
Storying and Re-Storying
An Ethic of Listening
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.
The author asserts her moral rights.
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’.
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.
…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.
Thus, to actualise the principles of palliative care for people who are living-dying, they, their families and friends, and palliative care professionals, could seek to understand and appreciate how a sense or ‘notion’ of the self is affected throughout the living-dying process and how, perhaps, these changes and complexities to the question of ‘who am I?’ can be addressed. If the field of palliative care purports to provide whole person or holistic care to dying people, as well as the ideal of living until death and death with dignity, then there is a need to appreciate the self-identity changes and challenges a person goes through and the possible reconstructions that may be desired and affirmed during this final and important stage of life.
Finally, a matter of clarification is needed to end this section on palliative care. The terms palliative care, whole person care, holistic care or end-of-life care are all used interchangeably throughout this dissertation and all refer to the same thing. Furthermore, I refer to the subject of this research as the ‘living-dying person’. This term acknowledges the dual processes of living and dying and was coined by Balber (1995) to stress dying people’s insistence that they were very much alive until they died. It is also important for the reader to understand that what is being investigated in this dissertation is not death, but the living-dying process. This last stage of life is often determined by a set prognosis and the cessation of curative treatments.
Secondary Objective: To explore palliative care practice options that will address the complexities of self-identity for living-dying people and their families.
Self-Identity And Narrative (Stories)
All that we have imagined ourselves to be is lost in dying. Our persona, our personal sense of history, our goals, our ideas about reality melt away as we lie dying. We [those who are dying] wonder who it was who stares at them from the photographs of happier, healthier times … who am I now? It’s not you anymore.
Dowling Singh, 1998, p. 162
The term self-identity is a contested concept and “can reflect diverse theoretical conceptualisations, the meaning of which escapes an obvious categorisation” (Mathieson & Stam, 1995, p. 471). It is not the purpose of this dissertation to propose diverse, analytical explanations as to the meaning of self-identity. However, that said, the theoretical underpinnings that have been utilised and valued in this investigation have been taken from the social constructionist’s writings about self-identity. This means that “any way of making sense of the self is socially constructed … the self is not an entity but is a construction” (McLeod, 1997, p. 90). In addition, our identities will be “fashioned in the construction and reconstruction of encounters with others, including imagined others” (Sarbin, 1997, p. 69).
From this social constructionist perspective the definition of self-identity is, “the composite of answers that an actor constructs to the ‘who am I?’ question” (Sarbin, 1997, p. 69). In other words, when people ask themselves or others – ‘who am I?’ (in either direct or non-direct ways) their sense of self will include the many answers to this complex question. I have found, from my experience in asking people this question, that common answers often include the relationships one is involved in and the ability to love others; the roles a person has carried out throughout life, including central work roles; the outer physical image of oneself; past and future hopes and desires; the ability to act and do things; one’s gender; one’s qualities and dispositions; and lastly what one stands for, or the faith/spiritual and ethical standpoints a person adheres to. These are just a few dominant areas that people speak of, and authors often write about, when discussing the ‘notion’ of self-identity. More often than not, the answer will take the form of a story about a person’s life.
These stories, people’s autobiographies, then shape who they are. Bruner (1987) argues, “we seem to have no other way of describing ‘lived time’ save in the form of narrative … [and that] in the end, we become the autobiographical narratives by which we ‘tell about’ our lives” (p. 13/15). Taylor (1989) also agrees that “[the] … basic condition of making sense of ourselves, [is] that we grasp our lives in a narrative. In order to have a sense of who we are, we have to have a notion of how we have become …” (p. 47). “Narrative is central to the representation of self-identity” (Currie, 1998, p. 2). Our selves are talked into ‘being’ through the stories we choose to tell.
By listening to the constructed autobiographies (self-stories) that living-dying people tell it remains up to them to interpret and define what their self-identity is for them. The terms self-identity, sense of self and selfhood are all used and referred to as having a similar meaning. In addition, a reference is made to the concept of ‘social identity’, which can refer to accounts of a living-dying person’s self-identity that ‘others’ provide. For example, a significant carer may propose their understanding of who that person is (the living-dying person) that may not be congruent with that of the person themselves. This can also be the case for medical personnel that assign an identity ‘onto’ a living-dying person, like the ‘sick role’ or society’s enforcement of a ‘cancer identity’ onto people who are dying of this disease.
The theories of narrativity and the telling of stories are reviewed in Chapter Two of this dissertation. This theory offers a framework for the understanding of how self-identities can be constructed and reconstructed. For example, when a person tells the story of their illness, “a self is being formed in what is told, both for themselves and for others” (Frank, 1995, p. 143). The literature on illness narratives has been utilised extensively in this dissertation as it provides valuable insights and comparisons for living-dying narratives. These narratives offer us a way of understanding and appreciating how a person’s identity can be constructed and, therefore, how listening to the stories that living-dying people tell can aid and affirm preferred identities before the end of life – in effect, helping a person hold on to, or gain clarity of, who they have been and who they are now.
There are many reasons why experience gets narrated …human lives need and merit being narrated. The need is manyfold and ties in, not only with constituting our self-identity, but also with justifying our very existence, our acts. This form of narrating is a sort of moral imperative.
Kerby, 1991, p. 53
The reasons why this dissertation comes under the banner of applied ethics are varied and require explanation. Firstly, when investigating and raising questions regarding selfhood, issues of ethics will necessarily be included. This viewpoint is derived from Taylor’s (1988) writings on selfhood. His central thesis is, “... being a self is existing in a space of issues, to do with how one ought to be, or how one measures up against what is good, what is right, what is really worth doing” (p. 298). This viewpoint is noted in the self-stories that were collected for this dissertation from the living-dying people and discussed in the reflective commentary in Chapter Four. The inclusion of the moral and ethical domain of oneself was mentioned in the collected self-stories through appraisive statements and questions, assessing the life they had led and the type of person they were. Therefore, it is the position of this dissertation that the self-stories that include the answers to ‘who am I’?, and our understandings developed from the stories will necessarily be of an ethical nature.
Secondly, this research is an applied ethics inquiry because it contains feminist notions of an ethic of care. This dissertation proposes processes of caring practices to aid living-dying people with their self-identity complexities, so it necessarily embraces these feminist perspectives of ethics. Feminists view ethics as relational engagements, which are concerned with how we respond to the ‘other’. Gilligan (cited in Tong, 1993) espouses an ethic of care that “stresses relationships and responsibilities” (p. 80). Nodding (cited in Tong, 1993), believes that “care is probably the foundation of ethics” and that human caring has not received attention in ethics deliberations, “except as outcomes of ethical behaviour” (p. 108). Care is seen as a “matter of being attentive to another’s wellbeing and of being willing to act to promote it” (Koehn, 1998, p. 24). Consequently, Koehn believes that this caring ethic requires us to become “engrossed in one another” (p. 22).
Furthermore, feminist ethicists are “sensitive to people’s voices, especially the voices of those who are disempowered, silenced and marginalised (P. Issacs, personal communication, June, 2002). This point is taken up by the next reason as to why this dissertation is an ethical inquiry. That is, to provide an opportunity for living-dying people to voice their stories and advocates for listening to these stories. Similarly, the care ethic posited by feminist ethicists “places great weight on the importance of listening” (Koehn, 1998, p. 21). Frank (1995) asserts that for silenced and marginalised people living in this postmodern period, there is a need for reclaiming one’s capacity for telling one’s story. If this is a required ethic for our time, as Frank claims, then what will also be needed is an ethic of listening. Therefore, there is a need to provide an opportunity for living-dying people to voice their own stories of living and dying, and reclaim themselves from the dominant medical and societal narratives of death and dying. In other words, reclaiming “dying from strangers and from pure biology to tell a different story about the way we die” (Kellehear, 1999, p. 3).
Final Objective: To provide living-dying people with the opportunity to voice their stories and advocate for the listening to these stories – an ethic of listening.
There are certainly others who believe that this topic is a vital one to explore. Kellehear (1990) suggests, “it is necessary to interview people whose newest and final aspect of identity includes a notion of ‘being dying’” (p. 66). In addition, Dowling Singh (1998) believes, “our sense of self, our sense of identity, endures profound and relentless changes during the course of terminal illness and the dying process” (p. 160). In more recent research on the topic of spiritual pain, patients stressed the sense of loss of self, caused by the “physical, identity, relational and existential changes brought about by the experience with the disease and its treatment” (McGrath, 2002, p. 5). Callahan (1993) points out that a core fear is “the sense that the self is losing its identity, its ‘I’ and ‘me’ are becoming harder and harder to locate” (p. 161). What could be more fearful to live through than the experience of “seeing the ‘self’ that is our deepest possession, the centre of our being, as perishable” (Callahan, 1993. p. 127). For Olsen (1997) has no doubt that when illness and impending death threaten an individual, “the self is always profoundly threatened” (p. 9). Finally, Exley (1999) concludes her article with the statement, “living with a terminal illness presents the dying with the constant challenge of reassessing and reordering their self-identities … Discovering that one is dying means that one’s self-identity is likely to be irrevocably changed and also, often more importantly, damaged” (p. 250). Therefore, there is agreement that the examination of self-identity complexities at the end of life is an important and relevant issue for living-dying people and that there is a need to further investigate this complex issue.
To appreciate the complex issues of these self-identity concerns at the end of life, Vries (1999) believes that future research “on the end of life may benefit from its relation to the self-identity” (p. 371). Similarly, Lofland (1978) agrees that there is “little traditional wisdom to guide them [people who are dying], few maps to show the way” and that research is needed to understand the personal implications of this final life process and its effects on self-identity (p. 44). Research inquiries with living-dying people, providing them with a platform to inform others about the self-issues they experience, has been lacking. As Hauser and Lantos (2000) point out, “… there are no complete first-person narratives about dying” (p. 6) and Kellehear (1999) “… the voice of the dying is difficult to discern” (p. 42). Palliative care research has focussed, in the main, on issues of biology and illness, rather than “more positively towards social experiences and personal identity” (Kellehear, 1999, p. 42). To sum up this rationale, the poignant words of Kellehear (cited in Perry, 1989) are presented to conclude as to why this inquiry is important:
Without ever questioning the dying about their social experience as they see it and as they interpret it, we are confined to speculation … Without systematic talks with the dying we may not reliably determine what are their problems and what are our problems. Without their story we may not be able to separate out the two or see how one might affect the other. Without this sort of work, the dying has no idea how others like them die, and they want to know; and when we become them, we may want to know (p. 65).
It is vital that we turn to living-dying people to understand the realities and experiences of the dying process. By listening to their self-stories we can gain a clearer picture of the dying process and its implications on self-identity. For this reason, the methodology chosen for this investigation is based upon the ideas, concepts and processes of the theories of narrativity.
In accordance with narrative methodology, I conducted in-depth, unstructured and informal sessions with living-dying people (known throughout this dissertation as consultants). This approach elicited the consultant’s stories about themselves and their living and dying experiences, particularly pertaining to their self-identity. Guiding questions concerning self-identity were utilised from various authors and were modified by myself. However, it was discovered in the first interview that there was a mis-match between this dissertation’s analytical conceptualisation of self-identity and the way that the consultant’s talked about their sense of self. As a consequence, these guiding questions were adapted during the research process and altered so that they fitted more closely with the consultant’s ideas of themselves, what was important to them and what was vital for them to tell (narrate). See appendices for sample guiding questions.
The consultants were enlisted through a community-based hospice service. The nurses of this service distributed information and consent kits to the clients (see appendices for information and consent kits). From the twenty kits distributed, three people replied and agreed to participate. The consultants were fully informed of their ethical rights before agreeing to participate, and written consent was obtained from each prior to the sessions. Expedited ethical clearance was gained from the Queensland University of Technology Ethics Committee and the committee ratified the information descriptions and consent forms. The sessions were recorded on audiotape and then transcribed verbatim. The consultants were given the opportunity to identity themselves or not and to include information or not.
Narrative methods of inquiry can provide excellent ways of understanding meaning and experience. Through the stories people tell, others can appreciate these experiences and the meaning that is given to these experiences more fully and richly. The reader will find further examination of narrative methods of inquiry and a fuller explanation of the methodology of this dissertation in Chapter Three.
Values And Limits
It is important for me to inform my readers of the implicit and explicit values inherent in this dissertation. These values mostly correspond with the palliative care principles discussed previously. Mostly, I believe that this vitally important last stage of life requires extremely sensitive, honest and whole person care by all those involved in the caring processes. I value a peaceful death, if that can be obtained, and have certain views about what constitutes ‘death with dignity’. Yet, after considerable time working in this area and studying this topic, I have learnt a central and important lesson. That is, that each person will have his or her own way of dying and that I should keep this in mind at all times. In that way I seek not to enforce my views of what constitutes a ‘right’ death onto anyone. Finally, I view this last stage of life as an important time, with the potential for personal growth and positive experiences. As Frank (1991) intimates, “even continuing illness and dying contain opportunities for renewal” (p. 2). My ideal would be that the process of dying will one day become as celebrated and embraced, as currently is the process of birth.
I also value self-awareness and issues of self-identity. I believe it is important for a person to be able to reflect on, and to restore their sense of self before they die, and to have their preferred identity affirmed by ‘another’. Hand in hand with this value, is the principle of open and honest communication. Fortunately, as Sheldon (1997) points out, “… open and honest communication is one of the principles of palliative care” (p. 58). Finally, I view the domains of psychosocial and spiritual issues as being of great significance in the care practices in this field. While I acknowledge the incredible work that has been done, and is still being done, to alleviate physical suffering at this time of life. I believe that much of the distress and suffering experienced by living-dying people can be eased if the other domains of the self (psychological, social and spiritual) are attended to equally. These areas need to be given further recognition in this field of health care delivery.
Time, unfortunately, has been the greatest limitation on this investigation. As mentioned above, only three living-dying people agreed to participate in this investigation. Time did not allow for further processes to locate more people with which to consult on this important topic. In addition, I had initially wanted to have two sessions with these people, so as to aid in the development of a trusting relationship. This would mean that I would have had further opportunities to talk with, and listen to them, and perhaps have reached greater depth when this trust was more fully established. Unfortunately, this did not occur and ideally, if this research were replicated, I would recommend using this process, as the things that we talked about were intensely private and could have benefited from further conversations. In addition, the generous people who did agree to talk with me were all women. Therefore, a man’s perspective on these self-identity issues was unfortunately not gained. Finally, this research would have also benefited from gaining insights from living-dying people who were residing in hospital-type palliative care settings. The living-dying people I consulted with were living their dying at home.
As the groundwork has been laid by this introduction, a review of the pertinent literature can now proceed. This review examines the nature of the dying process and how the values of our society have radically changed this process. It includes some of the more common experiences of loss and fear, as well as the stage theories which have been proposed that have dominated the literature on death and dying for some time. The conclusion of this chapter highlights those authors who have discussed the self-identity complexities for living-dying people, demonstrating that this topic merits further investigation.
The Second Chapter provides the reader with a conceptual-theoretical review of the theories of narrativity, and the practice of telling stories as being significant to self-identity constructions and reconstructions. Material is drawn from various authors, including a considerable amount from the social constructionist viewpoint. Other valuable insights pertaining to these theories of narrativity include the growing literature on illness narratives. The conclusion of this chapter discusses the usefulness of fostering living-dying narratives so as to provide restoration of self-identities for living-dying people and vital knowledge for health care professionals and society as a whole.
The methodological processes are discussed in Chapter Three. This includes the ‘narrative turn’ in ethical inquiry and the growing importance being placed on the collecting of, and listening to people’s stories. A description follows of the methodological steps utilised for this dissertation.
Chapter Four includes the presented self-stories collected for this dissertation. Note that the transcriptions are not included in full, yet there was a commitment to keeping the self-stories as ‘whole’ as possible to maintain the integrity of what was said. A multivocal commentary follows, so as to explicate themes from the self-stories and offer a reflective discussion of the most pertinent self-identity issues which arose during the conversations.
Finally, Chapter Five raises some possible palliative care practice options – focussing on life review processes, the importance of storying and re-storying for living-dying people and an ethic of listening. This dissertations contribution to understanding the living-dying process is acknowledged. In addition, proposed future research priorities are provided.
Dying - A Multivocal Perspective:
A Review Of The Literature
The purpose of this literature review is, firstly, to give the reader a sense of the Western cultural process of dying and how our relationship with dying is different from how it once was. The claim is made that these changes result from the medicalisation of the dying process and from technological changes, resulting in the desire to treat the person and to avoid death. It then demonstrates that the consequences of these changes may result in loneliness, loss and fear for people with terminal illnesses. Most importantly, it focuses on the self-identity changes and complexities for people who are going through the dying process. This review highlights the fact that much of the research and resulting literature concentrates on the concept of stages that people go through whilst dying, but fails to adequately address the self-identity issues people experience throughout the dying process. The literature identifying self-identity as an issue is reviewed but it is noted that these studies identify, but do not adequately explore, the importance of this issue from living-dying people, nor research how these people can be assisted in their search for the restoration or maintenance of a sense of self.
Our relationship to dying has changed significantly over the last century. Wass, Berardo and Neimeyer (1988), for instance, state that Australia during the twentieth century displayed “a combination of changing societal values, expanding technology, and population pressures [that have] altered the nature of living and dying in profound ways” (p. 140). This relationship we have with dying is influenced by what can be called the ‘isation’ of dying. The literature about dying includes varied ‘isation’ terms to describe what has happened to this experience in our culture. Such themes include the – medicalisation, bureaucratisation, institutionalisation, hospitalisation, professionalisation and secularisation of death and dying. All of these changes to our relationship with dying point to a very different ‘lived’ experience for the individual and for society as a whole in comparison to earlier and more traditional experiences.
Throughout the nineteenth century dying in Australia generally meant dying at home (Kellehear, 2000). The process of dying was usually something that involved the family and community. Traditional deathbed scenes include the whole family saying their last farewells and, underpinning this process was the idea that dying was the natural conclusion to a life, or an inevitable ending to a sickness that could not be treated. With the advent of modern medicine, and the established importance of hospital institutions, dying moved into these settings and embraced the ideological underpinnings of these contexts, namely a dominant medical, curative, technological, life prolongation discourse. Nowadays the majority of Australian people are dying, and will die, in institutional settings, be that hospital or nursing home (Kellehear, 2000). Recent demographic statistics show that around seventy to eighty percent of Australians die somewhere other than the home setting (Kellehear, 2000; Vries, 1999; Wass et al, 1988; Hauser & Lantos, 2000; Connelly, 1997).
Death and dying in an institutional setting is “a profoundly different experience from what it can be in one’s own home” (Fulton, 1976, p. 5). It is spoken about in terms of its isolation and accompanying loneliness, being cut off from the rest of life and community connections (Elias, 1985). Indeed, Illich (cited in Searle, 1998a) emphasises this ‘cut off – ness’ making death an “alien experience” (p. 31). This isolation, Charmaz (1980) writes, stems from at least three major sources: “(1) the consuming nature of the illness, (2) withdrawal by the dying themselves, and (3) social avoidance of the dying” (p. 159). When death is predictable, the dying are surrounded by an “emotional quarantine” (Weisman cited in Charmaz, 1980, p. 161). Patients often experience a sense of ‘depersonalisation’ as a consequence of the biomedical processes that treat people as a disease or sickness, rather than as people. This could result in a loss of control over the dying process and all that this experience encompasses. This loss of control may intensify and exacerbate that which has already been lost, and this could then increase the person’s sense of loss of oneself.
The hospitalisation of death and dying is often spoken about in conjunction with the ‘professionalisation’ of death – a process that is managed by professionals (Kauffman, 1995). This includes all facets of the dying trajectory. Indeed, as Kauffman (1995) explains, invariably “… all practical activities, from death to burial are carried out by professionals” (p. 52). Services are brought in to control when the person dies, to determine when death has occurred, and to prepare and bury the deceased person (Kellehear, 2000). Again, we understand that the possibilities resulting from these processes are a further isolation – a ‘management’ and a ‘regulation’ of death and dying. This further removes it from the social sphere and immerses dying in a managerial culture, which includes the values which are consistent with managerialism. Kauffman (1995) asserts that, we have become “alienated as a society and as individuals from the reality of dying” (p. 79).
The deconstruction of the historical reality of dying by the medicalisation experience elicits powerful statements of its negative consequences. These include, from Elias’ (1985) book on the Loneliness of Dying, that “never before have people died as noiselessly and hygienically as today in these societies, and never in social conditions so much fostering solitude” (p. 85). Brown (1990) writes that the ideal of a ‘natural’ death has come to an end and that the “… mechanical death has conquered and destroyed all other deaths” (p. 9). Finally, and most dangerously, Hauser and Lantos (2000), in discussing ‘the good death’ in American society, conclude that, “… the medicalisation of death has become so successful that what people fear most is not death itself but a slow death – locked behind hospital doors – that prolongs life and makes it a living hell” (p. 4).
Certainly this sad and pessimistic stance taken by so many writers is only one side of the picture. In a recent article, Connelly (1997) describes the positive turn that she perceives in the medicalisation of death. She declares that the practice of medicine “seems to be moving toward a more balanced view of its role in death and dying … [that there are] signs that medicine is becoming more holistic, … [and is moving] in the direction of helping patients die well” (Connelly, 1997, p. 332). It is not my intention to portray the medicalisation of dying as wholly negative, because in reality the advances of medical technology have meant better pain management procedures and other such beneficial advances.
This picture of dying in Australian society needs to acknowledge the intertwining effects of the advancements made in the area of science and technology. Advances in medical technology have transformed the dying process, “resulting in a lengthier process and one that may prove more stressful due to the loss of control” (Vries, 1999, p. 57). Health is an intrinsic value in society and the consequence of this is to focus on life prolongation (Kellehear, 2000). Life prolongation, and the technology that advances this, has become of primary importance. Kauffman (1995) passionately expresses that “death is the annoying human factor at the centre of super technology” (p. 53). It can be asserted that dying has become located in a cultural narrative of biological science, hospital technology and a depersonalisation of human experiences.
The ‘death with dignity’ movement is the response to the dominating biological and technical discourse with its inherent value on curative, restorative and life prolonging therapies (Kaufman, 2000). Thus, dying is being interpreted as the failure of health and human beings inability to create technologies to prevent our inevitable demise (Kaufman, 2000). Humankind continues to advance our technology to prolong life and promote health, whilst death itself is de-valued. Though it must be acknowledged that many of society’s advancements in science and technology in the medical sphere has many positive elements, what however needs to be highlighted is the fact that the overall effect is still detrimental; a negative cultural change in our relationship with dying which often has significant implications for the living-dying person and his or her family. In addition, this brief overview only highlights the more obvious repercussions. The other effects of language, discourse and ideology on the living-dying person and the implications this has on a person’s sense of self have not been examined in this dissertation. For now, however, it is enough to simply gain a picture of some of the more obvious results of the ‘isation’ of dying. It is often viewed in the literature on death and dying as a great impediment to the acceptance of death as a process, a journey and something that needs to be accepted as inevitable – something to value (Magnusson, 1996; Hauser & Lantos, 2000; Dowling Singh, 1998).
What the above scientific ‘advancements’ present, by Kellehear’s (2001) reasoning, are inadequate responses to dying, “…as long as they remain technical, clinical and institutional” (p. 508). Kellehear claims that in terms of alternative responses, our national discussions about dying focus on two themes – palliative care and euthanasia, and that both have at their core the notion of a “participatory style of healthcare” (Kellehear, 2001, p. 510). The first of these, the modern hospice movement has grown significantly since its inception in the 1960’s as an alternative to the ‘isation’ of dying. Since then different models for providing hospice care have emerged in Australia. These vary from freestanding hospice units, to palliative care units attached to acute care hospitals, community based hospice centres and hospice-at-home services. The principles underpinning palliative care service delivery are that it:
neither hastens nor postpones death
relieves distress and suffering
integrates the psychological with the spiritual dimensions of life
provides appropriate support for the dying person and his or her family
(Kellehear, 1999, p. 5).
What needs to be remembered is the question of what these palliative care principles actually mean to living-dying people and their families. Certainly, it is important and essential to have prescriptive principles to guide palliative care practice, but what should be kept in mind is that ‘appropriate support’ and ‘how distress is relieved’ will often mean different things, to different individuals.
What palliative care does offer is a refusal “to let medical details be the whole story” (Hauser & Lantos, 2000, p. 4). A medical doctor, Ira Byock, in his book entitled Dying Well reports that the hospice community believes that “when the human dimension of dying is nurtured, for many the transition from life can become as profound, intimate, and precious as the miracle of birth” (cited in Hauser & Lantos, p. 5). Holistic care is the cornerstone of palliative care – attending to, not only the physical care of living-dying individuals, but also the psychological, social and spiritual distress that can be experienced. Hence, living-dying individuals may access palliative care services that “neither hasten nor postpone death”, and which attend to the other spheres of human existence. Alternatively, they may express the desire for euthanasia, in order to end their suffering (Kellehear, 1999, p. 6). Kellehear (2001) further asserts that the “twin social movements of hospice care and euthanasia … are a reaction to the fear and revulsion felt at the prospect of isolation and institutionalism” (p. 511).
This fear and revulsion can be, in part, attributed to the changing societal values as referred to by Wass et al earlier. This point is taken up by Magnusson (1996) who reports on the view that modernity seeks to deconstruct mortality and highlights the relevance of values in our current society and how dying is actually in opposition to these prevailing values. His argument is that the prospect of our own mortality threatens the prevailing, dominant social values. The outcome is that “the deconstruction of death means a pathologisation that has turned dying into an illness which can be cured” (Magnusson, 1996, p. 1). Bauman (cited in Crossley, 2000) similarly intimates that to deconstruct mortality means that we “exorcise our fear of death by breaking down threats, among which illness is paradigmatic, into smaller and smaller units” (p. 170) – we reduce the dying process into smaller, more manageable portions. This ultimately means, from Bauman’s conceptualisation that, “the threat of death is denied, the big issue of mortality is evaded and thus the whole mystery of life sublimated” (cited in Crossley, 2000, p. 171). Kellehear (2001) conveys a comparable idea that the technological age in which we live values such things as “youth, vigour, and flexibility. It values change and progress and all that is scientific and tends to deny the value of ageing and inherited wisdom” (p. 50). Death, then, becomes something of an embarrassment, something to be shunned and moved to the borders of society where no one has to see it. It is little wonder that people fear it, and all the loss of what is valued in society that it supposedly brings.
In summary, with the changes described above in our cultural and societal attitudes and values toward dying, the end stage of life is viewed in a negative light, and often experienced accordingly. It is posited as a biological experience and, while the hospice movement hopes to reverse this, the dying process is not seen as the social and cultural experience that it once was viewed as. Moreover, it is not seen as a process, a mystery or a journey, but rather the medicalisation of dying has turned the dying experience into a dilemma or something needing to be fixed. As Kauffman (1995) reinforces, the “current medical practice does not allow for a transition, a process, a passage between life and death” (p. 77).
A recurring theme in the literature on dying is that of the loneliness and isolation of this transition as a result of the medicalisation of dying. Hilbert (cited in Searle, 1998a) emotively describes dying as the “falling out of culture … a descending spiral into isolated, anomic, inhuman experience” (p. 25). Elias (1985) describes the experience of abandonment and desertion of living-dying people, which occurs even before they die (p. 23). He believes that the living-dying individual is denied the crucial contact with people to whom he or she is attached, and that generally our society marginalises dying (and aging) people from communal life (Elias, 1985, p. 72). This is one area of concern that the hospice movement and palliative care principles are trying to rectify. Still, Sudnow (cited in Kellehear, 2000) confirms that, “patients experienced a social death …through no fault of their own … even before their eventual biological death” (p. 137). The question then needs to be asked - does this mean the death of one’s sense of self, before actual death itself?
In addition to this loneliness, the fear experienced by living-dying people is also commonly addressed in the literature. Fear, it can be said, crosses over all other experiences. So where there is pain, there is fear; where there is loss, there is fear; where there is uncertainty, there is fear. Kellehear (2000) eloquently describes the “individual gut-wrenching fear associated with cancer…it is not simply death we fear, but pain, dependency, loneliness, and the abandonment of family and unfinished goals” (p. 133). It is fair to conclude that one of the most dominant psychological occurrences is fear.
Likewise, loss is also a prevalent theme in discourses of dying experiences. Bregman and Thiermann (1995) inform their readers, “although death as destruction plays a real and significant role … death as loss is the overwhelmingly dominant motif” (p. 137). This includes the loss of human contact, loss of family and friends, loss of body and control, and most importantly, for the purpose of this research investigation, the loss of self-identity (Wilcox & Sutton, 1977, p. 92). This sense of loss is summed up potently by Nuland (1993) who writes of the “all too [frequent] series of destructive losses that involve, by their very nature the disintegration of the dying person’s humanity” (p. xvii).
This disintegration of self equates to an experience of existential anxiety, or what Weisman & Worden (cited in Olsen, Morse, Smith, Mayan & Hammond, 2001) identify as ‘existential plight’. References are made to the living-dying individual experiencing a profound and intense time of questioning, resulting in attempts to find meaning in his or her life and death (Charmaz, 1987; Crossley, 2000). This time, Weisman & Worden (cited in Olson et al, 2001) observed, is coupled with gaps in memory, emotional distress, an increased sense of vulnerability, and difficulty in coping (p. 302). Crossley (2000) contends that the primary challenge for the living-dying individual is to “reascribe a sense of meaning to his or her life” (p. 135) – regarding his or her sense of self and a life as lived.
As previously mentioned, the viewpoint of this dissertation is that the living-dying process involves multiple, complex challenges and assaults to a person’s sense of self – his or her identity. With death comes the inevitable annihilation of the self (Feifel, 1977). Furthermore, dying is thought to mean destruction and disintegration (Kauffman, 1995). With this impending disintegration Kauffman (1995) asks – “can the integrity of persons [with a terminal illness] be maintained or restored in the face of such threats?” (p. 21). An individual’s knowledge of her or his demise, “as a conscious, reflective thought”, brings about a fear of ceasing to be (Kauffman, 1995, p. 21) – the dissolution of one’s identity. Not only does the living-dying individual experience great vulnerability and change in self-identity, but he or she may also be confronted by continuing thoughts of ‘no self’ existing at all.
Given that changing self-identity complexities for living-dying people is discussed by the authors mentioned above, one would hope to find extensive research into this crucial topic and that this research would investigate the importance of understanding and aiding these self-identity challenges for living-dying people. Unfortunately, research on this topic has not occurred. While it is tempting to assume that this might relate to the oft quoted realisation that Western society is ‘death denying’, and that death is thought to be a ‘taboo’ subject, Lofland (1978) points out that, “we might consider it somewhat odd, the statement that death is a taboo topic … should continue to be asserted in the face of nearly a decade of non-stop talking on the subject” (p. 92). Bregman and Thiermann (1995) also emphasise this “paradox of denial and talkativeness” regarding death and dying (p. 4). After reviewing the vast amount of literature on the subject of death and dying, an extensive body of theoretical writings on the topic has been discovered; much of it, however, relates to theories relating to ‘stages of dying’ but does not discuss the implications to the individual’s self-identity during these phases.
An early researcher of the dying experience and of the stages of dying was Kubler-Ross (1969). Her pioneering work with dying patients identified their loneliness and isolation, which resulted in an “impersonalised, dehumanised and mechanised” experience (Kubler-Ross, 1969, p. 101). Kubler-Ross postulated a five-stage theory of dying that included denial and isolation, anger, bargaining, depression and acceptance (Kubler-Ross, 1969). What has come to be a main objection of this particular stage theory is the ideal of acceptance as the preferred end state. What is thought to signify a more realistic experience for this time is what Wass et al (1998) describes as ‘middle knowledge’. This describes a position somewhere between “an open acknowledgement of death and its repudiation” – a type of fluctuation between acceptance and denial (p. 142). In comparison, Pattison (cited in Doka, 1995) depicts the living-dying trajectory as a three phase journey that includes: an acute phase centring around the crisis of diagnosis, a chronic phase stressing living with disease, and a terminal phase, “where impending death is both certain and paramount” (p. 115). Similar to Pattison, Weisman (cited in Doka, 1995) suggests a four phase theory that includes an “existential plight” phase – the initial shock of diagnosis and the confrontation with a person’s sense of mortality and vulnerability; a second phase called “mitigation and accommodation”, where the sense of crisis recedes as the individual begins treatment; a third phase of “deterioration and decline”; and finally, the last phase of “preterminality and terminality”, that includes the preparation for death (p. 115). What these stage theories have in common is a distinct time line of acute, chronic and terminal phases – the lived temporality of living-dying.
What is crucial in theorising about people’s lived experiences of dying is that phase or stage theories are simply general descriptions, or perceived courses of dying, for a highly complicated and individual process. These stage models are arguably “too schematised, too prescriptive, … everyone faces death in a unique way” (Bregman and Thiermann, 1995, p. 138). These stage theories have been criticised, notably by Churchill (1979) who argues for the ‘moral primacy of stories’ rather than stages. He highlights the negative implications for health care professionals utilising a stage theory, rather than letting the individual person chart their own course of dying and listening to that journey (Churchill, 1979). Therefore, it could be argued that although stages provide a useful way of studying the process of dying, “they in effect impose limits on our understanding of specific patients’ experiences” and have become prescriptions for dying, rather than possible descriptions (Charmaz, 1980, p. 153/168). In addition, it is important to note that these prescriptive stage theories do not include the individual identity concerns that each of these phases may present. Some authors have, however, speculated, either directly or indirectly, on some of these self-identity concerns.
Many of these speculations include notions of future time. Tomer (cited in Kauffman, 1995) describes the disruption of future plans with regard to self-identity. Part of each person’s self image is that of a future self – in dying this is destroyed, along with plans, hopes and dreams for the future. Again, we note the theme of “the eventual obliteration of self-identity” (Searle, 1998a, p. 1520). Feifel (1977) recognises the vulnerable state of the identity for living-dying people and professes that “we have fallen from the expectations of our ego ideal” (p. 114) – our ego ideal being one that includes our future self, that can no longer be. Olsen et al (2001) reports that living-dying people “felt they needed to keep on going”, to shift the focus from the future to the present and that this focus should include a restoration of self (p. 303).
Feifel (1977) further notes that the action of entering into a hospital means that living-dying people leave their own homes and communities and much of their self-identities (p. 167). This statement draws attention to the concept that our identities are intertwined and bound up in our homes and possessions, our work and hobbies – our chosen lifestyles. He believes that “we feel stripped and humiliated if our clothes and personal belongings are removed” (p. 167). Goffman (1963) further discusses this concept in terms of the nature of institutions (such as a hospitals), when he writes that once stripped of these things a person is “reduced in our minds from a whole and usual person to a tainted, discounted one” and labels these stripping processes as “degradation ceremonies” (p. 12). The effect of these ‘strippings’ is that a person may perceive “an undesired differentness” from what was initially perceived of themselves (Goffman, 1963, p. 15). Therefore, a change of context such as moving from home to an institution such as a hospital will necessarily include an alteration of one’s identity, especially if that hospital stay is over a long period of time. Such drastic life changes mean one’s self-identity is likely to be irrevocably altered. Exley (1999) believes that it is necessary for living-dying individuals to modify and renegotiate their self-identities. Additionally, Mathieson and Stam (1995) hold a similar opinion, being that when a person has cancer “…one’s identity will forcibly undergo transformations” and infer from their research that living (and dying) with cancer automatically means a life that is “identity-altering” (p. 283/287).
Kellehear (1990) conveyed the necessity of interviewing and researching people “whose newest and final aspect of self-identity includes a notion of ‘being dying’” (p. 66). In a later book, Kellehear (2000) proclaims that to live with cancer, means living with a cancer identity. The identity challenges he discusses identify the problems of living with a cancerous body which betrays the ‘true self’, and that the cancer sufferer is “forced to deal with a new identity constructed around the cancer … a cancer identity that is spoiled” (p. 139). Similarly, Lofland (1978) declares that the dying must engage in a kind of “role enterprise … constructing for themselves the particular combination that will make up their identities as dying persons” (p. 44). Both authors consider that the dying process will include the reconstruction of a new self-identity, of sorts, that includes a ‘dying identity’. It is also important to note that both of these authors, one writing in the seventies (Lofland, 1978) and one writing more recently (Kellehear, 2000), assert that there is little wisdom to guide living-dying people in this self-identity adjustment and that more discussions and interviews need to take place to “provide a map of how to be dying … how to act en route to the grave” (Lofland, 1978, p. 44).
Wilcox and Sutton (1977) write about the fear of the loss of self-identity. These authors declare that the loss of human contact, the loss of family and friends, the loss of one’s body and control result in the loss of one’s sense of identity. “Human contacts affirm who we are, family contacts affirm what we have been, and the control of our bodies affirm one’s own self” (Wilcox and Sutton, 1977, p. 92). This discussion on the possible implications for self-identity during dying concurs with a similar notion to that above – that “one is faced with the crisis of maintaining an integrity of ego in the face of forces toward dissolution and annihilation of the person” (Wilcox & Sutton, 1977, p. 93).
Charmaz (cited in Parker-Oliver, 2000) is another author who has written about the identity challenges of chronically ill and living-dying people. Charmaz (cited in Parker-Oliver, 2000) believes that “maintaining a positive sense of self can often become a significant problematic issue” (p. 506) and that identity configurations are socially created and socially maintained. Therefore, “the social identity conferred upon the individual typically has profound implications for any personal identity the individual claims” (cited in Parker-Oliver, 2000, p. 506). A social identity is the identity given, or even enforced upon a person by other people, and indeed, society itself. This has particular implications when we consider notions of a ‘cancer identity’ or the stigmatisation of living-dying people. Charmaz (1980) further stresses that “the self may be obliterated by institutional practices” and that no new self is developed – instead “the self is transformed into an entity regarded as no longer human” (p. 163). Charmaz (1980) sums up that “the patient is apt to be stripped bare of selfhood before death” (p. 165) and thus ‘dies’ as a ‘self’, before biological death. Charmaz (1987) has written primarily about the self-identity struggles for people with chronic illnesses and stresses, “illness forces people to experiment, adapt and reorganise in order to maintain control over themselves and their lives” (p. 318). This struggle is a quest for self-esteem, especially when the “foundations for self have become fragile and shattered” (Charmaz, 1987, p. 318). How much more imperative is this ‘struggle’ for those with terminal illnesses who, as noted, are faced with ‘no self’ existing at all? It would seem that dying, the ultimate life disruption, “calls for a radical reconstruction of an altered self” (Charmaz, 1987, p. 319).
In Balber’s article (1995), which argues for the telling of, and listening to living-dying people’s stories, the outcome would be an enhanced self. This author suggests that the living-dying process could lead to a new and more authentic self, that could “keep alive treasured images of the self to preserve a sense of a continuous identity” after death (p. 110). The viewpoint Balber maintains is that a re-evaluation of one’s whole structure of meaning is needed, to “enhance quality of life and decrease anxiety and depression” (p. 108). Comparable to this idea of authenticity is Ken Wilber’s account of his wife’s dying process, where as her body deteriorated, “the more real and truer Treya emerges more sharply” (cited in Bregman & Thiermann, 1995, p. 128). In the same way, Searle (1998a) points out that the reconstruction of self-identity would necessarily include a sense of meaning and purpose that would be restored. Finally, Wass et al (1988) metaphorically suggest, “our death is the last act of the drama … [where] we find ourselves on the stage of life determining to be the person we want to be, yet we are denied the last act” (p. 25). This points out the problematic position living-dying people may find themselves in if they are not able to reconstruct a renewed sense of self before they die.
The last author to be reviewed, who eloquently speculates about the dying process and its implications for self-identity, is Dowling Singh whose (1998) book, The Grace in Dying, presents a spiritual perspective of the complexities and possibilities of the dying process. One chapter highlights the complexities of self-identity alterations at this stage of life and asserts, “our sense of self, our sense of identity, endures profound and relentless changes during the course of terminal illness and the dying process” (p. 160). Those who are living and dying wonder – who am I now? Dowling Singh (1998) has witnessed from living-dying people the significance of “all that we imagined ourselves to be is lost in dying. Our persona, our personal sense of history, our goals, our ideas about reality melts away as we lie dying” (p. 171). What Dowling Singh emphasises in conclusion is that the ‘me’ that was, is no longer, and that we need to create the environment and conditions “that nurture movement through the transformations of dying”, which includes focussing on the living-dying person’s restoration, alteration or reconstruction of their sense of self (p. 283).
The issue of the living-dying person’s restoration of this altered sense of identity is the main focus of this investigation. The literature on death and dying shows that we are moving toward a greater appreciation of the complexities of the lived experience of living and dying for individuals. The recognition of the cultural changes in the relationship with dying, and the common themes of the individual experience, highlights the interest and concern that this area now holds. However, few writings and research projects directly address the self-identity implications for living-dying people. As Vries (1999) reinforces, “the relationship between the self-identity and the end of life is an area modestly explored, yet offers great potential” (p. 372). Indeed, those writers who have written about identity and dying, such as those reviewed above, tend to postulate and speculate, but do not directly discover from living-dying people themselves what is needed, or is important to them about the enduring, existential question of ‘who am I?’ whilst they are actually dying. Kellehear (1999) points out that research into the social experiences and personal identity issues of the dying process are needed “to restore the balance to our understanding of dying” (p. 42). We fail to recognise that living with dying is also about vulnerable and changing personal identities and social needs (Kellehear, 2001). If we are to deliver palliative care services in the truest sense, there is a need for research to focus on the crucial issues of selfhood and self-identity, how important it is to these people, what the issues are for them and what assistance can be provided to them in terms of “a map of how to be dying” (Lofland, 1978, p. 44). This focus on restoring and transforming the self whilst living before dying, would mean that the integrity of the person is found through some measure of reconstruction – maybe some answers to the question of ‘who am I now that I am dying’?
This review has provided insight into how the living-dying process has altered over time. This has resulted in a very different ‘lived’ experience of dying and many possible self-identity changes, challenges and losses for the living-dying person. The growth of the palliative care movement was reviewed, as were the theories concerning the various effects experienced whilst living with a terminal illness. It has been shown that, although some authors have highlighted the significance of self-identity changes and complexities during this time, there is little research to investigate how this sense of self is altered during the living-dying process and how one’s sense of self can be reconstructed before death. The theories of narrativity, which view the telling of stories as a way of constructing and reconstructing self-identity, are examined next. This concept of the narrative construction of self-identity and the practice of telling stories can provide a way of preventing the loss of, and maintaining selfhood, whilst a person is living his or her dying.