‘ACACIA HOUSE’ Novel ‘ TEXTS: ETHICS, LITERATURE, & CARE FOR THE DYING’ Dissertation Vivien Ronda Stuart RN (1970), BA (University of Western Australia 1995), DipEd (UWA 1997), HDR Prelim (UWA 2006) This thesis is presented for the degree of Doctor of Philosophy of the University of Western Australia School of Social Sciences English and Cultural Studies 2012 ii ABSTRACT Fiction: Acacia House Texts that portray the dying experience usually include reflections on life and relationships, the society that either sustains or inhibits such relationships, and the mutuality or discord that occurs during the dying process. Acacia House is a work of realist fiction, which conforms to this tradition of the literary examination of individuals interacting with others during the terminal phase of life. Told from the perspective of caregivers, it demonstrates how quality care and nurturing relationships may transform the dying experience. In the novel, the hospice ‘Acacia House’ operates at a time when quality palliative care is under threat in Western Australia, and, as a consequence, the nurses Alice, Maeve and Gabby have to contend with interpersonal and institutional tensions. Alice, an Australian, trained to nurse by strict routines in Adelaide, has previously been powerless to relieve the suffering of the dying. She has escaped a marriage to a troubled Vietnam veteran, and raises her son alone in Perth. Deeply committed to both her son and the hospice, Alice questions ideas of God that inevitably arise in the hospice setting, and becomes an outspoken advocate for pacifism in the aftermath of the 2001 terrorist attacks in New York. An Irish nurse, Maeve, helps to care for her dying brother in her hometown of Sligo. Enamoured with a young surfer from Perth, she then moves to Australia. She nurses at Acacia House partly to honour her brother, but she harbours unresolved guilt over aspects of his death. Maeve’s narrative demonstrates her acceptance of death and dying, the prolonged nature of grief, and also her grief for the Ireland she once knew. Gabby, from South Africa, experiences sporadic shame and grief after reluctant migration with her family to Perth. Her narrative raises refugee and migration issues and, at its conclusion, issues of global health inequity as she confronts the AIDS crisis in KwaZulu Natal. Acacia House describes both the caring ethos and the conflicts that arise in hospice institutional life. Familiarizing its reader with a topic that is often difficult to discuss, it details both the practical aspects of care and the relationships between caregivers and the dying, their families and friends. It also confronts important ethical, social, political and economic issues that have an impact on end-of-life care, including apportioning of resources, accommodation of religious and cultural beliefs, advanced care planning, euthanasia, administration of life-extending treatments, the use of opioids iii and sedation, and compliance with alternative therapies. The privilege of caring for the dying and their loved ones is evident in the nurses’ narratives despite the vast emotional toll such caring sometimes inflicts. The intersection of the nurses’ professional and personal lives ultimately reveals both the force and frailty of the compassionate hospice ethos. The final death, the death of the hospice, breaks institutional relationships but becomes a catalyst for hope in the individual narratives. Dissertation: Caring Texts: Ethics, Literature and Care for the Dying The critical component of this thesis takes as its premise the assumption that people are more likely to give and receive appropriate end-of-life care if they have given prior consideration to dying. It assumes that thanatographical, fictional, poetic, and cinematic texts engaging with this often taboo topic may encourage discussion of vital issues and enhance the potential for quality care. The dissertation investigates a range of texts that explore events and relations at the end of life. Because the self exists in relation to others, understanding of the dying process may encompass various textual perspectives: that of the dying, loved ones and caregivers. The dissertation investigates texts from each of these perspectives and illuminates issues germane to caring for the dying: depersonalization and its antithesis in the health care setting, denial and acceptance of impending death, the tension between autonomy and beneficence, grief, and quest for meaning. The dissertation also explores these issues as they arise in ‘Acacia House’. The critical framework inherent in the recently formulated ‘ethics of care’ informs the discussion of each text. Assuming a relationship between texts and their readers, the dissertation asks how literary works might raise questions about the nature of appropriate end-of-life care. While observing that ‘Acacia House’, by presenting alternative perspectives on social, political and economic issues encourages readers to reach their own conclusions, it notes that the novel is resolute in its advocacy of a strong caring ethic. iv CANDIDATE’S DECLARATION This thesis does not contain work that I have published, nor work under review for publication. v vi ACKNOWLEDGEMENTS I would like to thank my supervisors Winthrop Professors Brenda Walker and Dennis Haskell for their encouragement and professional support in the writing of both the novel component of this thesis and its associated dissertation. My thanks also go to many friends for their careful reading and considered responses to fragments of my work: Jen Banyard, Tik Dickson, Anne Flynn, Gina Gliddon, Caitriona Neinarber, Arianne O’Connell-Chavez, Lynn Oldham, Susan Reuvers and Cathryne Sanders. Their help has been invaluable. Any remaining flaws are entirely my own responsibility. I am indebted to various members of the international palliative care community for their valued help with my research. First, my profound thanks go to the Msunduzi palliative care community in Natal, South Africa, who willingly shared their wealth of experience with me: to Nancy Aucock and Barbara Panajatovic for facilitating my visit, to Maureen Snowdon for valued insights into the history of Msunduzi hospice; to Zo Finca at the Edendale branch for enabling my visit there; to Lindewe, the Edendale hospice nurses and to some of their patients who welcomed me into their homes; my special thanks go to Themba Baloyi who welcomed me into her community and introduced me to the important memory work which assists children orphaned by AIDS; and to the Prestbury Hospice team, in particular Wendy Allen, Jenny Reynolds and Sheena Sivraman. Next, my appreciation goes to members of the Irish palliative care community: to Professor of Palliative Nursing, Philip Larkin, of Our Lady’s Hospice, Dublin, for sharing his palliative care wisdom and making the hospice library available to me; to the St Francis Hospice Dublin’s Kaleidescope conference for broadening my horizons and giving valuable feedback on my research; to Sligo nurses Hazel Smullen and Mo Keane for their patient, warm-hearted and longstanding assistance with issues related to palliative care, Irish spiritual and cultural practices, and the Irish use of language; to Fr. John Carroll, Chaplain at the North West Hospice, who extended the hand of friendship (and many books) to this unknown Australian, assisted my understanding of Irish spirituality, and introduced me to ‘Yeats Country’ – County Sligo’s spectacular scenery and its historic and prehistoric landmarks; to Dr Una MacConville for sharing her experience of the Irish cultural landscape and for making her PhD thesis available to me; to the caring community at Dzogchen Beara, and in particular Rigpa senior instructor and Spiritual Care Educator Christine Whiteside and Spiritual Care vii Coordinator Ally Cassidy who furthered my understanding of Buddhist perspectives on grief and bereavement. Last, I’m profoundly grateful to the Western Australian hospice palliative care personnel, past and present, who assisted my research, including Lou Angus, Patricia Berridge, Sister Helen Connolly, Dorothy Cosgrove, Eleanor Roderick, Majella Ryan- Bennett and Mary Burke. My special thanks go to Marg Sealey for her valuable assistance with my research into Motor Neurone Disease. I’m also indebted to Pete and Lu Thompson in Pietermaritzburg (Msunduzi), for their hospitality, generosity, and willingness to introduce me to the local culture and to share their extensive knowledge of the natural world, and in Australia, to many former South Africans who gave insights into the migrant experience. In Ireland, I’m grateful to Dana Hardy who willingly offered hospitality, friendship and local knowledge; to Eamonn King who gave me first-hand information about funerary practices in the west of Ireland; to the helpful and generous staff at the Sligo Central Library; and to members of the Irish Humanist Association for inviting me to their meetings and sharing their philosophy. In Western Australia, my thanks go to Pierre-Louis de Kock and Ben Drew for imparting their knowledge of the Western Australian geological, surfing, native vegetative and ornithological landscapes, and to my daughter Jennie Opie for her yoga expertise. My gratitude goes to the people I have had the privilege to nurse, friends and families I have met, and to the teams of caring people I had the honour of working with during my years as a palliative care nurse. You have been an inspiration. Finally my appreciation goes to my family who rarely questioned