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Accompanying them home : the ethics of hospice palliative care

Wilson, Monika Anne (2009) Accompanying them home : the ethics of hospice palliative care. PhD thesis, Queensland University of Technology.

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Abstract

This inquiry, which employed a narrative research approach, critically explored the ethical dimension of hospice palliative care. Hospice palliative care is the profession specifically developed to care for the dying. The development of this practice has grown significantly since the 1980s in Australia, yet ethical inquiry into this professional practice has largely focused on particular issues, problems or dilemmas, such as euthanasia. Although particular ethical issues are important considerations, a broader investigation of the ethics of hospice palliative care practice has not been given sufficient consideration in the growing accumulation of the research literature in Australia. Jennings (1997) surmises that “systematic reflection on ethics in the hospice field is curiously underdeveloped” (p. 2). This study goes someway towards filling this gap. In building upon the Pallium research by European scholars and integrating a social practice framework (Isaacs, 1998) this inquiry provides an alternative account of the ethical agenda and one which has privileged an internal exploration, rather than assume that the ethics would be the same as any other health care modality or to simply adopt a dominant, principles-based approach. These internal explorations were located in the storied accounts of thirty interdisciplinary hospice palliative care professionals.

This thesis provides a thorough, textual conversation into the realm of ethical caregiving at the end of life. Several key insights were illuminated. Firstly, total care must be central to the philosophy underpinning hospice palliative care practice, but this concept and practice of total care was being eroded and contested. Secondly, a predominantly modernist account of personhood was located in the narrative accounts. This modernist account of personhood was thought to be insufficient for the practice of total care and needed to be reconceptualised. An embedded ontological account was provided which would assist with the understanding and practice of total care. Thirdly, initially it was thought that there was no common, shared understanding of the purpose of the practice. It was suggested that the profession was “wandering in the wilderness” when it came to the aim of its practice. However, the professionals did share a common telos (aim towards a good) and it was overwhelmingly relational. This led to the proposal of a new telos for hospice palliative care practice centered on the creation and maintenance of unique relationships which would assist people in their final stage of life. Lastly, the ethical frameworks which guided practice for the professionals were presented. In these frameworks it was significant values (acceptance of human mortality, total care and honest and open communication) and relationships (how we treat each other) which played the main role in what constituted hospice palliative care ethics. An account of a hospice palliative care ethical relationship was provided which included a proximity stance of in-between. Overall, any ethic for hospice palliative care must have at the heart the relationship between professional caregiver and living-dying person. The relationships in this social practice, between each other, accompanying one another, are our ethical compass.

This thesis concluded that hospice palliative care, as a social practice, has a rich ethical dimension as understood and articulated by its professional members. These insights have resulted in the construction of a new ethical framework reflecting, formalising and adapting the ethical dimension as understood by its professional members. This ethical framework - A Relational Ethic of Accompanying - is needed to help maintain, sustain and protect the unique identity of this profession. This framework adds to the “moral vocabulary” (Jennings, 1997) and “moral specificity” (ten Have & Clark, 2002) of hospice palliative care practice. In addition, it would provide important guidance to palliateurs reflecting on how best to provide quality, compassionate and ethical care at the end of life.

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ID Code: 20536
Item Type: QUT Thesis (PhD)
Supervisor: Massey, David& Isaacs, Peter
Keywords: ethics, moral, narrative, story, social practice, hospice palliative care, dying, death, personhood, ontology, living-dying person and end of life care
Divisions: Past > QUT Faculties & Divisions > QUT Carseldine - Humanities & Human Services
Institution: Queensland University of Technology
Deposited On: 19 May 2009 14:31
Last Modified: 29 Oct 2011 05:52

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