The Experience of Dying- A topical Autobiography by Dr Carmen Zammit

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CHAPTER 1 INTRODUCTION

This chapter introduces the thesis with some preliminary comments on the process of dying, to set the foundation for the significance, aim, objectives and background of this Reflective Topical Autobiography (RTA) of my experience of dying.

The process of dying is an undeniable life stage we must all inevitably experience. Living through life-threatening illness to the point of near death has made profound and positive changes in peoples’ lives (Bartholome cited in Byock 2000, p.281; Foos-Graber 1989; Longaker 1997; Remen 1996; Carrie cited in Sandstrom 2003, p.470; Weekes cited in Zammit 2001), including my own. It is possible to make these changes before our own death. The information contained in this thesis shows that we can consciously choose how to take leave of our present reality, the people we so love, and this wonderful and unique planet. In discovering how much we have to lose, we may equally begin to realise how much there is to love in our life, now, while we still can.

Much work has been done to describe the process of dying from the point of view of physicians, nurses, psychosocial and medical researchers (Bourgeois et al. 2004; Chan 2004; Enck 2003; Kübler-Ross 1969, 1981; Meyers 2004; Porter et al. 2005; Quill & Byock 2000; Samarel cited in Wass & Neimeyer 1995). The work which (arguably) most influenced public perception of dying was a book entitled “On Death and Dying” written by Swiss-born American psychiatrist Elisabeth Kübler-Ross (1969). Dr Kübler-Ross personally interviewed over two hundred dying people as part of her research. From this she helped develop an “understanding of the different languages terminally ill adults and children use when they try to convey their inner knowledge” (1981, p.ix). 

Dr Kübler-Ross identified five observable “stages of dying” (1) denial and isolation (“No, not me!”), (2) anger (“Why me?!”), (3) bargaining (“If I am good, then can I live?”), (4) depression (“What’s the use?”), and (5) acceptance (1969). Two of her most significant achievements are that she recognised firstly, that dying people are in fact living people who have particular feelings and needs which when acknowledged and addressed can enable them to live until death with dignity, that is, with as much acceptance and peace as possible; and secondly, that by learning from the dying we learn more about ourselves. 

In this thesis, the experience of dying and facing death is not synonymous with living with a life-threatening or serious chronic illness. The emotional experience of a person who is facing imminent death is different from one who is critically ill and can intellectually anticipate death as the end of one’s existence (Chatterjee 2003-2004). Dying occurs when death is imminent and foreseeable.

While researchers, such as Dr Kübler-Ross, have observed and described what takes place during the final stages of human life, far less is known and understood about the lived and felt experience of dying. Perhaps the most important limitation faced by observers of the dying process is that the experience of dying is an inner experience. “There is no mutually common experience between the world of the living (to which researchers belong) and the world of the dying. Understanding the physical experience of the pain and suffering in the dying person requires an embodied approach, one that combines the physical, affective and social dimensions in a web of lived experiences” (Chatterjee 2003-2004, p.197).

I knew I was dying at the time I decided to undertake postgraduate research. I was later told I was dying. The cause was hypocalcaemia from widespread malignant tumours in the bone, the result of metastatic breast disease, which was diagnosed three and a half years before. In 2004 I spent 11 days in a St Vincent’s Hospice, and on at least one occasion I was not expected to survive the week. Against all odds, I did survive. Dying was, for me, such a total and overwhelming experience. I had neither the inclination nor the ability to articulate the process at the time. Later, a RTA approach seemed the most appropriate methodology by which to recount my experiences.

Significance
The first-person account is the singularly most authoritative method of describing the lived and felt experience of dying. To date, research reveals a scarcity of first-hand accounts of the experience of dying. The significance of this thesis lies in it being written in an effort to fulfil the need for experiential accounts. This is a first-hand account, in present time, of my own experience of dying. 

Aim 
The aim of this thesis was primarily to describe my experience of dying. A second consideration was to describe the impact on family, friends and others.

Objectives 
My initial objective was to write down my experiences in response to the many questions and concerns raised by family members and friends. I believed they were interested in making more informed decisions about their lives and treatments should they themselves be diagnosed with a life-threatening illness. Their behaviour, questions and emotional responses, suggested that they were interested in what actually happens during the dying process, so that they themselves could be somewhat prepared for the eventuality. I wanted to give a true account and accurate information, which in the first instance might help my own genetic family. Beyond this, I hoped to reach those interested parties who would benefit from this information and knowledge, particularly those who themselves were diagnosed with a life-threatening illness, and those at risk of doing so. My hope was that it would also help their partners and carers, both personal and professional, to also know and understand the experience, so that they could give the support that comes from knowledge and empathy. 

The Researcher’s Background: My Mother, Myself
I had promised myself very early in life that I was not going to live my mother's life. Her whole life's work seemed soul destroying; her tremendous efforts and her self-sacrifices were unrewarded, and unrecognised. Hers was a traditional role inherited by women of her generation and persuasion: bearing one child after another, forever tied to house and family.

She lived in a patriarchal society, with strong Catholic beliefs and strong family loyalties which served to inbed her in her oppressed way of life, tying her ever more tightly to her society's culture and values - values which were very old, going back in time as far as recorded history. She had given birth to thirteen children. Her workload was such that she could only attend to our very basic needs. She was servant to her husband and children. She was constantly working; cooking, cleaning and sewing from morning till night, day after day, year after year. 

She recalled her own childhood, working the poor, yellow limestone soil with primitive tools; working beside her family in the countryside of Malta, a tiny, arid island in the Mediterranean. She would be awakened at five in the morning, given a hot, strong drink, then summoned to the fields. She would work alongside her mother, who had herself given birth to nine children. Her life too was moulded to the same ancient pattern.

My mother's schooling was not considered important. She left in fourth class, primary school. Education was thought to be wasted on girls, who were expected to marry, bear children, and toil in the old unchanging way. In Malta, there was no paid work for women. There was barely enough work for men who would often need to travel abroad to earn money. And although market gardening provided a livelihood, it was meagre, and often inadequate to sustain the family, particularly during periods of drought. Industrialisation eventually forced my mother's family to move to the city, where her father was able to find employment that provided a steady income. There, my mother became apprenticed in dressmaking, which together with lace making, was a means by which women could supplement the family income. On her own, a woman would not be able to survive on such an income, she would be dependent on her husband or family for survival. Because of this, it was essential for women to observe social norms. Women's place was well defined. Failure to comply to such norms meant social ostracism. Women were given no real choices; they conformed so that they could survive.

My mother recalled that on her wedding day she had not wanted to marry. She was married anyway. And from that day onwards, her fate mirrored that of the other village women of the island. Her predicament was sanctioned by a society for which this was the normal way of life, and it was particularly sanctioned by the priests, the virtual rulers of the land. She bought goat's milk and fresh vegetables daily from the street sellers. She washed by hand and scrubbed on her knees. She nursed and cared for her children, and sadly lost two. She struggled alone during the years of war, with only her mother and sisters providing some comfort.

My earliest memories were of the hostel, the "silver city", our first home when we arrived in Australia. We had come by ship on a government assisted passage for migrants. We had travelled for a month to a land which provided the promise of a prosperous future for us all, the hope that our land of birth could not. This was the turning point - our lives were to be transformed. But it meant starting life among strangers - we were strangers ourselves in a foreign land.

So the family worked and survived in Australia. It seemed we grew away from the old ways of Malta. I believe we all, my sisters and I, hoped to be free of our inherited roles.

It did not occur to me till recent years that I was not in fact free, that I was living my mother's life. Outwardly, things were worlds apart - the contrast between the old ways in Malta, and the new modern lifestyle in Australia was immense. Inwardly, we women shared the same sense of hopelessness and helplessness, living lives of quiet desperation, unable to protest the injustices and indignation of being women. We depended entirely on the men in our lives: our fathers, our brothers, our husbands, our teachers, our priests and our politicians. With them was the power and the glory. Women bore the children still - and still we were dependent. Dependence meant obedience, we had no real say. No one could see, no one would hear us.

My first choice of husband now seems destined. His background was almost identical to mine, but within a year of marriage, he suffered a psychological disorder – the outcome of his own type of oppression. I became the "breadwinner" for the next four years, a predicament most unusual in the early seventies for women of my generation. I nursed him till he grew strong, but his recovery ultimately depended on my defeat; that is, he needed the companionship of men – both as friends and as lovers. It was at this time I discovered the extent of my own oppression. I was a victim as was my mother. There was a pattern appearing that I had not noticed before.

My generation of women were the first in the family's known history to have the opportunity to support themselves and to change their circumstances. However, their choices seemed limited by an innate sense of powerlessness that had been reinforced since childhood. My older sisters married, as my parents expected, and proceeded to bring children into the world.

I chose marriage and a career. Early in my marriage I tentatively considered the possibility of bearing one or two children. After deep consideration, I decided not to have children.

Earlier, in high school, I had attended an all-girls Catholic school. My performance at that school proved to be successful, and that was despite the adverse circumstances at home. I cannot doubt that my success was probably due to the absence of male peers - whose competitiveness tended to foster my sense of inadequacy. In this school I was fortunately also exposed to competent female role models.

A significant role model at the time was a woman for whom I had a great deal of respect and admiration. She was a teacher, who was head of the art school where I trained before starting work. She was strong and authoritative, a woman of considerable talent. She was not generally well liked, and she was continually being undermined by male members of staff. I liked her. Despite other people's opinions of her, I responded positively to her wisdom and instructions, and her understanding of her subject.

My training led to a career as a graphic artist and illustrator, a career which was to extend over a thirteen year period, beginning with an apprenticeship to a technical illustrator, and eventually to working in an advertising studio in the heart of London. In London, I was the only female illustrator, to three full-time and three freelance males. I was in a particularly militant mood in the two years I worked at the studio. These were the first two years directly after my separation from my first husband. My feelings of aggression, I found, were an advantage in the high powered, demanding climate of advertising. All my energy went into my work, but this behaviour was damaging to interpersonal relationships, especially alienating other women who tended towards supportive roles in the workplace. They generally made coffee for everyone, discussed personal problems, and they tended towards under-achievement. They seemed to lack confidence in their abilities, and they displayed a sense of inequality and unworthiness. I was perceived as a threat and treated with suspicion. There was a similar reaction from men. There was also an uneasiness about my refusal to discuss my private life and my disinclination to flirt. Work at that time was my life, I was single-minded about it, and that fact seemed to be a problem for everyone but me.

The problems I had while at work seemed to relate not so much to my abilities, as to the fact that I was female. For example, my application for a housing loan was turned down when I was supporting my husband; I was refused work for which I was well-qualified, because I was just married; my wage did not generally equal a man's wage for the same work; I felt pressured to prove my loyalty to either the women or men at work; and I was often excluded from engaging in informal interactions with my peers because they were generally men. Any attempts to assert my rights would elicit a punitive reaction, ranging from being ignored, to the threat of dismissal.

Perhaps the most important issues for me regarding work were the ethics involved. These concerns eventually led to my leaving the career for which I had been trained. I was often conscious of a dilemma – artwork was an ideal choice for me, but profits were consistently valued over people. For example, my latest work involved the promotion of glamour, luxury items, cigarettes and alcohol. It became increasingly difficult to ignore the fact that my work was being used solely to make money – without any consideration being given to the consequences of promoting such items, that is, the cost in terms of human suffering.

Work, which takes into account both a sense of responsibility towards myself as well as towards others, became the major concern in my choice of work. I see a danger in working primarily for financial gain or working in an environment which fosters discrimination of any sort, whether based on the gender of a person, or that person's age, race, religion, physical or intellectual ability when these are not relevant to the job at hand. Such attitudes devalue the human element at work and they create division between people. Responsibility ought to be extended also to the natural environment on which we as a species rely.

I observe that the organisations which most influence social attitudes such as educational, political, religious and business organisations, are invariably controlled by English speaking, able bodied, Caucasian males. These are simultaneously the most powerful and advantaged positions in the country. Clearly, women and minorities are not fairly represented. 

Discrimination against women ought not to be acceptable in Australia today. Such discrimination belongs to history, to the dying and dead world of my mother and her foremothers. There are signs in our modern-day Australia that employers, trade unions and governments are becoming aware of the need to demonstrate their commitment to non-discrimination; they are beginning to introduce positive procedures to promote Equal Opportunities. However, although Affirmative Action has ensured that women are represented to some extent in powerful positions, fair representation is not enforced by law; it is a "toothless tiger". When it does occur, there is some doubt as to whether women's power is actual (decision making), or token (symbolic).

Equality for women at work is not yet assured. Women are still limited in their choice of work by the fact that work relating to the private sphere tends to be unpaid, with only minimal compensat­ion given to women with children. On the other hand, work relating to the public sphere is paid. Yet women choosing paid work are limited once again: in the type of work available to them, and in the rewards for such work. Women appear to be in a "no-win" situation. Work that women are likely to choose is not well rewarded, neither in monetary terms nor in prestige. Work that is well rewarded either in financial terms or in prestige appears to be reserved for men, particularly for English speaking, able-bodied, Caucasian men. Discrimination of this nature ensures that women do not rise to the highest positions of power.

In spite of sometimes overwhelming opposition, the women's movement has achieved much in recent years. Women's successes include: the introduction of family planning clinics, child care facilities, women's refuges, women's active participation within unions, access to work in non-traditional areas, access to higher education, and business management schemes. These advancements improve women's prospects at work and expand women's choices.

Advances such at these are now being considered in my country of birth. Women's work, in Malta, still centres around the home, caring for a family for which they have the main responsibility. For such women, work remains unpaid and undervalued. Women in Malta, this day, have better choices.

For myself, a woman in Australia, I find there are still limitations, but at least I do have choices. I can live where and with whom I choose, and do the work I value most. To a larger extent, I can live life in the way I choose – the kind of life my mother could only dream of.

Definition of Key Terms 

One of the important and formal considerations when writing this thesis was that the language I used was clearly communicated. A list of key terms and my definitions follow:

· Alternative medicine (or therapies): refers to unconventional approaches to health and healing which are used instead of conventional Western medicine;

· Biomedical or conventional Western medicine (or therapies): refers to the science devoted to preventing or alleviating or curing disease and injuries;

· Complementary medicine (or therapies): refers to unconventional approaches to healing and health, many of which are thought to complement conventional Western medicine;

· Death: refers to the end of life; death of the human body is marked by the cessation of heartbeat, respiration, movement, reflexes and brain activity;

· Dying: refers to the imminent approach of death; losing the bodily attributes and functions necessary to sustain human life;

· Hospice: refers to a hospital offering terminal care facilities to help patients and their families cope with death and dying;

· Integrative medicine (or therapies): or holistic therapies, refers to an approach to health and healing which combines conventional medicine with alternative and complementary medicine, an approach which accurately reflects the intrinsic link between body, mind and spirit;

· Palliative care: refers to the active total care of patients whose disease is not responsive to curative treatment, where the control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount;

· Thanatology: refers to the study or science of the experience of death and dying and of the process of bereavement.

Thesis Chapters

Chapter 1 described an introduction to the process of dying as foundational to the aims, objectives and significance of the research, before sharing a reflection on ‘My Mother, Myself’. The chapter also provided a list of definitions of key terms.

Chapter 2, the Literature Review, provides critiques of conventional medicine and of complementary and alternative medicine.

Chapter 3 describes the Methodology, Methods and Processes of Reflective Topical Autobiography (RTA) as reflection on the theme of dying, using autobiography as a valid approach to uncovering new knowledge.

Chapter 4 describes my experience of dying, written in autobiographical form, and addressing the aims and objectives of this thesis.

(Supervisor’s note: In Chapter 5, it was Carmen’s intention to write a Discussion and Conclusion, but her death at 5pm on Monday, 11/02/08, prevented this from happening).